Self Directed Learning Package - University of Queensland

3 • Self Directed Learning Package - Introductory Registered & Enrolled NurseSelf directed learning package 1Nurse (Introduction)

4 • The Palliative Approach Toolkit

5 • Self Directed Learning Package - Introductory Registered & Enrolled NurseThe PalliativeApproach ToolkitThe Palliative Approach (PA) Toolkit is designed to assistresidential aged care facilities to implement a comprehensive,evidence-based palliative approach of care for residents.The PA Toolkit contains:Education resources• Three self-directed learning packages1. Nurse (Introduction)2. Nurse (Advanced)3. Careworker (Introduction)• Two educational DVDs1. “A palliative approach in residentialaged care: Suiting the needs”2. “All on the same page: Palliative carecase conferences in residentialaged care”• Five educational flipchartsThe flipcharts are for short sessional inserviceeducation targeting careworkersand are mapped to the clinical caredomains.Module 1: Integrating a palliativeapproachModule 1 focuses on policies, systems andresources to support a palliative approachin a residential aged care setting.Module 2: Key processesModule 2 focuses on three key processesessential in implementing a palliativeapproach:• Advance care planning• Palliative care case conferences• End of life care pathwayModule 3: Clinical careModule 3 focuses on the assessment andmanagement of five clinical care domains:• Pain• Dyspnoea• Nutrition and hydration• Oral care• DeliriumResource materialsThe PA Toolkit includes several importantreference publications:• “Guidelines for a Palliative Approachin Residential Aged Care – EnhancedVersion”• “Therapeutic Guidelines: Palliative Care,Version 3”• “Now What? Understanding Grief”brochure• “Understanding the Dying Process”brochure• “Invitation and family questionnaire -Palliative care case conference”For the purposes of this toolkit, nurse will refer to registered and enrolled nurseand careworker will refer to personal careworker, health careworker andassistant-in-nursing.

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9 • Self Directed Learning Package - Introductory Registered & Enrolled NurseSECTION 1BobIn this first section we will help you answer these questions:• What is palliative care?• What is a palliative approach and when is a resident palliative?• What is advance care planning and how can it help a resident,their family and health care staff?• What can you do to identify, assess, report and managedyspnoea?Key PointsBefore reading any further, watch the DVD “Suitingthe needs”. We will refer back to scenes throughoutthis first section, so you may want to take somenotes of the DVD’s key messages.While watching the DVD you were introduced to Bob and hiswife June.Case Study - BobBob is a 75 year-old retired house painter. Imagine that hewas admitted to your RACF just over 12 months ago when hisbreathing deteriorated and he could not cope at home evenwith home supports.Bob has emphysema (chronic obstructive airways disease)and on rare occasions requires oxygen. He has no cognitivememory deficits and is competent to make decisions abouthis care. Careworkers need to assist him with showering.He recently was admitted to hospital when his breathingbecame very difficult. This scared him and he worries that itwill happen again.His wife June has some arthritis but is still able to liveindependently at home. She visits Bob after lunch almost everyday. Bob has one son, William who visits every two weeks.

10 • The Palliative Approach Toolkit

11 • Self Directed Learning Package - Introductory Registered & Enrolled NurseWhat ispalliative care?What is palliative care?The World Health Organisation defines palliative care as:An approach that improves the quality-of-life of individualsand their families facing the problems associated with lifethreateningillness, through the perception and relief of sufferingby means of early identification and impeccable assessment andtreatment of pain and other problems, physical, psychosocialand spiritual. 17Three forms of palliative care 4,5Key PointsWhen you think about a palliative approach forresidents in RACFs, it is important to distinguishbetween a palliative approach, specialist palliativecare and terminal care.A palliative approachA palliative approach aims to improve the quality-of-life forindividuals with a life-limiting illness and their families, byreducing their suffering through early identification, assessmentand treatment of pain, physical, cultural, psychological, socialand spiritual needs.Underlying the philosophy of a palliative approach is a positiveand open attitude towards death and dying.Key PointsA palliative approach is not restricted to the lastdays or weeks of life.

12 • The Palliative Approach ToolkitWhy is a palliative approach important?A palliative approach can:• reduce distress for residents and their families• reduce transfers to hospital because aged care staff developskills to manage the palliative care needs of residents• help to involve the resident and their family in decisionmaking about their care• encourage open and early discussion about death and dyingwhich helps advance care planning• provide opportunities for improved control of pain and othersymptoms• allow the resident to be cared for by staff that they know andhave developed a rapport with.Bob has chronic obstructive airways disease (COAD)/emphysema that is worsening. He has already been admitted tohospital once and has said he doesn’t want this to happen again.A palliative approach aims to reduce his suffering throughearly identification, assessment and treatment of pain, physical,cultural, psychological, social and spiritual needs.Bob needs review of his symptoms particularly his shortness ofbreath. He also has some psychological and social needs thatrequire discussion with his GP, the nursing staff and his wife.Thinking PointSo it seems that a palliative approach is appropriatefor Bob. Would any of your current residents benefitfrom a palliative approach?Thinking PointIn the DVD, Bob’s careworker, Kerrie, mentions anumber of these important benefits. Can you relatethese points to the care of residents in your ownfacility?• When has open and early discussion on death anddying facilitated a good death for a resident?• Has a dying resident been transferred to hospitalunnecessarily?• How did this transfer affect the resident, family andstaff?When does a resident need a palliative approach?Watching the DVD, you would have heard that a palliativeapproach is not limited to the last weeks or days of life.It is a philosophy of care that may be appropriate many monthsbefore a resident actually dies and aims to improve the quality-oflifefor people with an eventually fatal condition and their families.Thinking PointDo you agree that Bob needs a palliative approachto his care? He has been in the facility for over 12months. Why do you think it is only now beingdiscussed?Specialist palliative careIn the DVD, Peter, the GP suggested getting a specialist palliativecare team to help plan for and treat Bob’s severe breathlessness.A small number of residents may experience severe or complexproblems as their condition advances. These may be physicalsymptoms or complex ethical dilemmas, family issues orpsychological distress.Specialist palliative care teams do not usually take over the careof residents but instead can provide advice on complex issuesand support to GPs and the aged care team.Terminal careWhereas palliative care may take place over many months,terminal care is the care focused on the final days or weeksof life.This form of palliative care is appropriate when the resident isin the final days or weeks of life and care decisions may need tobe reviewed more frequently. Goals are more sharply focusedon the resident’s physical, emotional and spiritual comfort andsupport for the family, including bereavement care.Identifying when a resident is moving into the terminal phase isnot easy because there are few clear indicators to identify whena person should be considered for end of life care. (You will readabout this in more detail later in this package).

14 • The Palliative Approach ToolkitKey PointAdvance care planning should be seen as anongoing process rather than a single event.Be mindful that the resident’s end of life care wishes need tobe revisited over time. Residents and families may change theirminds, or become clearer about their wishes concerning end oflife options. Perhaps, like Bob, they have a distressing experiencewhere they are transferred to hospital and are anxious that thisnot happen again.Planning aheadThinking PointWhen do you think discussions with residents andtheir family members about advance care planningshould be conducted? Immediately after admission?After several months? When a resident becomesterminally ill?Key PointAdvance care planning should be routine practicefor every resident soon after admission to aresidential care facility. We advocate this beingintegrated into the assessment and care planningprocess from admission onwards.It is not compulsory to have a legal form filledin BUT there should be a focus on discussionand ongoing communication with the residentand family.A nurse-led care conference is recommended to facilitate thisprocess. We suggest that the residents GP be invited to attend(or at least be made aware of any wishes or decisions regardingadvance care planning).It is never too early to consider, and write down, thoughts andwishes regarding end of life care. In fact, it is preferable toconsider these issues clearly and calmly when the matter is noturgent or critical.Writing it downIn the DVD, Bob wanted to make sure that everyone knewthat he did not want to be ‘kept alive’ with a ventilator if hisbreathing condition worsened again. We saw Bob talking withhis GP, nurse, wife and careworker about his wishes. He was keento ‘…get it down in writing’.Key PointHaving a written advance care plan or directive canimprove end of life care and reduce unwanted andunneeded medical treatments and hospitalisations.Advance directives are legal documents that record the resident’swishes about their care if they are unable to voice these wishesthemselves. They can also appoint a substitute decision maker,usually called a guardian or medical power of attorney.Key PointEvery Australian State and Territory has differentlegislation, guidelines and documents for advancecare planning, and where they exist, advancedirectives. The CareSearch website is a good placeto start to find out more: www.caresearch.com.auTable 1 displays an example of part of an advance healthdirective.Most residential aged care facilities provide residents and familywith information about advance care planning on admission. Adiscussion between the resident (if able), family, nursing andmedical staff will often take place about this time. The outcomesof this discussion are recorded in the resident’s file.Keep in mind that an advance care plan does not have to becompleted in one sitting. The best outcomes may come fromany number of conversations. Giving a resident the time to thinkabout their options is very important.

15 • Self Directed Learning Package - Introductory Registered & Enrolled NurseTable 1Example of an advance health directive form 10The directions you give in this section apply only if, in the opinion of your treating medical practitioner:- you have a terminal, incurable, or irreversible illness or condition,- or you are in a persistent vegetative state,- or you are permanently unconscious,- or your are so seriously ill or injured that you are unlikely to recover to the extent that you can survivewithout the continued use of life-sustaining measures.I request that:everyone responsible for my care initiate only those measures that are considered necessary tomaintain my comfort and dignity, with particular emphasis on the relief of pain.Initial here:any treatment that might obstruct my natural dying either not be initiated or be stopped.Initial here:unless required for my dignity and comfort as part of my palliative care, no surgical operationis to be performed on me.If I am in the terminal phase of an incurable illness:I do not want cardiopulmonary resuscitation.I do want cardiopulmonary resuscitation.Initial here:Initial here:I do not want assisted ventilation.I do want assisted ventilation.Initial here:Initial here:I do not want artificial hydration.I do want artificial hydration.Initial here:Initial here:I do not want artificial nutrition.I do want artificial nutrition.Initial here:Initial here:I do not want antibiotics.I do want antibiotics.Initial here:Initial here:

16 • The Palliative Approach ToolkitDoes advance planning have to bea legal process?It is not compulsory to complete a legal form. Not all residentsare willing (or able) to complete a legal document such as anadvance directive.The Good Palliative Care Plan, developed in South Australia isan alternative option. It can be used in any state or territory andwhile not legally binding provides opportunity for documentingthe outcomes of a discussion about the resident’s currentcondition and goals of care. Table 2 provides a segment of thisdocument.Table 2Excerpt from the Good Palliative Care Plan 9Circle one of the options:We have agreed that in the event of further deterioration in thepatient’s condition:1. Full cardiopulmonary resuscitation with total body support asrequired will be undertaken.2. Intensive medical support will be undertaken, butcardiopulmonary resuscitation will not be initiated, and nolong-term support measures, including ventilation or dialysis,will be undertaken.3. The emphasis of management will be on Good PalliativeCare, highlighting the relief of symptoms and discomforts.No artificial measures designed to supplant or support bodilyfunction will be undertaken.4. Other. Please specify:What if a resident is no longer able to expresstheir wishes?Thinking PointBob was able to make his own decisions and putthese in writing. Unfortunately, not everyone wants todo this or is able to.• If Bob had advanced dementia and could notexpress his wishes about future care, what shouldhappen?• Should Bob be sent to hospital even if his family sayit was not what he wanted?Key PointIf a resident is not competent to make decisionsfor themselves, they cannot complete an advancehealth directive or legally appoint someone toadvocate on their behalf.This does not mean that they cannot be involved indiscussions about their advance care planning.it is also worthwhile considering the family’s viewson what the resident would have wished.What is my role as a nurse?Residents and family members often become close to nursesand careworkers and may mention issues related to advancecare planning with you. Sometimes what seems like a ‘throwaway’ comment e.g. ‘I wouldn’t want to live like that’ may beimportant to follow up.Encourage the resident and/or family member to discuss theirconcerns. Be alert for any ongoing concerns a residentmay raise.Thinking PointHas a resident or family member ever talked to youabout the resident’s end of life care wishes? Howdid you handle this? Is there anything you would dodifferently next time?

17 • Self Directed Learning Package - Introductory Registered & Enrolled NurseDyspnoeaDyspnoea is an awareness of uncomfortable breathing. It canalso be called breathlessness or shortness of breath.Thinking PointHave you ever had the experience of not being ableto breathe well? Perhaps after a strenuous exercisesession? Can you imagine living with that sensationconstantly? If you have, what thoughts or feelingscome to mind?The Australian author Tim Winton wrote in his 2008novel ‘Breath’: 15‘It’s funny, but you never really think much about breathing,until it’s all you ever think about.’Dyspnoea• is common but under-recognised• impairs activities of daily living, limits mobility, increasesanxiety, fear and social isolation• is often associated by residents and family withimpending death• triggers panic, and panic exacerbates dyspnoea, so thepattern becomes cyclical• may be equally or even more distressing for the family.So… what can you do to help a resident with dyspnoea?SeeRecognise and assessReview previous medical history• pre-existing illnesses e.g. COPD• exacerbating factors e.g. anaemia or profound anxiety• additional factors e.g. pulmonary embolism, infection or leftventricular failure.Associated symptoms• cough• sputum• haemoptysis (blood in sputum)• wheeze• stridor• pleuritic pain• fatigue• anxiety or panic.What makes it better or worse?Observe or ask the resident:• physical activity?• posture?• environmental factors? (e.g. room sprays, pollen)• emotional factors? (e.g. anxiety, excitement, fear)• others?Key PointDyspnoea is not so much about how fast or slow,deep or shallow someone is breathing. Rather itis a subjective feeling that everyone experiencesdifferently.As a nurse, you should be able to complete anddocument a comprehensive baseline assessment of anyresident who presents with dyspnoea.

19 • Self Directed Learning Package - Introductory Registered & Enrolled NurseHere’s some examples of simple measures:• Bob might be prescribed a small dose of opioid medication(e.g. morphine) at least ½ hour before showering. Ask thecareworkers to let you know when he is showering so you cangive the medication at the correct time.(Morphine can be effective for breathlessness as well as pain).• Try not to rush or hurry Bob and allow rest periods duringactivities (this decreases his need for oxygen and reducesanxiety).• Encourage careworkers to leave the exhaust fan on in thebathroom and make sure the shower water is deflected awayfrom his face (prevents claustrophobia).• When Bob returns to his room, sit him upright in a chair,perhaps leaning with his arms over a table or overway table(opens up his chest/lung space to allow more air in).• Open a window or use a fan to circulate air (for the feelingof moving air).OxygenThinking PointDid you notice that oxygen therapy is not mentionedin the list of management strategies? Does thissurprise you?Key PointFew residents with dyspnoea actually benefit fromoxygen therapy.Oxygen is often considered to be a non-specifictreatment for dyspnoea, however:• Individuals can become highly dependent onoxygen supplementation to the extent that somepeople consider it to be their ‘lifeline’.• Just because Bob is short of breath does notmean that he is hypoxaemic (measured withpulse oximetry) and needs oxygen.• Oxygen may be indicated if Bob’s oxygensaturation (SaO2) is persistently

20 • The Palliative Approach ToolkitWriteDocument your actionsDocument enough information to allow others in themultidisciplinary team a clear picture of the clinicalsituation.Avoid general statementsPOOR COMMUNICATIONGOOD COMMUNICATIONEvaluation of interventions‘Resident states dyspnoea has reduced to‘with effect’ or ‘effective’.2/10 score (was 5/10)’.Note to GP‘Careworkers report Bob is reporting‘Please review Bob ASAP re dyspnoea’. dyspnoea on exertion for the last threedays. He reports severity = moderate(5/10) when walking 20 metres to thedining room. Relieved by resting for5mins. Careworkers wheeling him downin chair until he is reviewed. Afebrile, nochest pain, wheezing or other symptoms’.ReviewEvaluate and reassess as necessaryThinking PointYou identified that Bob is breathless and conductedan assessment.You made sure careworkers implemented the simplemeasures you had documented on the care plan.There is appropriate medication ordered if necessary(opioids) and you have spent some time addressingBob’s anxiety about his breathing. Great job!Can you tick this off your list? Not quite yet.There is an important question to answer:Did your strategies work?You can check the effectiveness of your management strategiesby asking the resident to rate the severity of their dyspnoeaagain (using a rating scale), observing their breathing rate,or asking if their mood, sleep or function has improved.Key PointRemember, assessment of any clinical problemis an ongoing process rather than a single event.Undertaking a formal, scheduled assessment maybe more valuable than frequent, brief impressions.SUCCESS!You have completed Section 1 of the learning package.You may decide to pause now and answer the first sixquestions of the quiz at the back of this learning package.

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23 • Self Directed Learning Package - Introductory Registered & Enrolled NursePalliative care caseconferencesThinking PointIn the DVD “All on the same page”, Alfredparticipated in a palliative care case conference.• Why has a palliative care case conference beenarranged for Alfred?• What are the main reasons for having a palliativecare case conference?• When is the most appropriate time during Alfred’sstay to have a palliative care case conference?What is a palliative care case conference?A palliative care case conference is a meeting held between aresident (and/or their family) and their care providers.The aims are to:• identify clear goals of care for the resident including a reviewof any advance care plans• provide a safe environment where issues and questions aboutend of life care can be raised and appropriate strategiesagreed upon for future care.When should a palliative care case conferencebe held?There is no right or wrong time for a palliative care caseconference. However, we recommend using the followingmarkers to help decide:• A positive response to the question: “Would you be surprisedif the resident died within the next six months?”• If there has been a significant functional or medical decline.• If problems are perceived concerning goals of care aroundfutile treatment (perhaps after an acute event).• If the resident is transferred or admitted to the RACFspecifically for comfort care or palliative care.

24 • The Palliative Approach ToolkitThinking PointDo you think Alfred needed a palliative care caseconference?Let’s look at the facts. He was admitted to hospitalthree times in the last six months for worsening of hisairways disease and has not returned to his previouslevel of function after each episode. After a discussionabout the goals of his care, the aged care teamdecides to organise a palliative care case conference.Who organises a palliative care caseconference and who should attend?What is a palliative care link nurse?A palliative care link nurse (or champion) agrees to takeon a special role, promoting and facilitating a palliativeapproach within the RACF. A link nurse may:- promote and model the palliative approach- coordinate the implementation of the PA Toolkit- act as the ‘link’ person for external providers (e.g. GPs,specialist palliative care services, allied health, clergy)- assist with auditing or quality improvement processes- conduct in-service training for staff.Alfred’s daughter Sarah, Alfred’s GP, and a nurse and careworkerfrom the facility attended Alfred’s palliative care caseconference. The nurse organised and facilitated the conference.Attendees may vary depending on what is being discussedand who is available. However the following people should beconsidered:• resident (if capable)• legal decision maker/medical power of attorney• family members• residential facility staff including a nurse and careworker• allied health e.g. speech pathologist, occupational therapist,physiotherapist, social worker, dietician• clergy or pastoral care worker• specialist palliative care nurse or GP.A palliative care case conference may take a few weeks toorganise. It is usually organised by a nurse from the residentialfacility, often a palliative care link nurse.

25 • Self Directed Learning Package - Introductory Registered & Enrolled NurseIn the DVD “All on the same page” a careworker attended thecase conference. She was able to describe important aspects ofAlfred’s care of which the nurse may not have been aware.Key PointCareworkers often notice important changes ina resident’s mood, ability to function, swallow,walk, breathe etc. Residents may say things tocareworkers that are important for other careproviders to know.What is the nurse’s role in a palliative carecase conference?Key PointAs a nurse, you may be asked to:• assist to organise and/or attend a palliative carecase conference• seek information from family members and/orcare staff about any questions or informationthey would like discussed• collect or collate information before the caseconference such as clinical records, medicationcharts, advance directives etc.If you are asked to organise or facilitate a palliative care caseconference, there is a planning checklist and facilitators guide inKey Processes (Module 2) of the PA Toolkit.What happens in a palliative care case conference?The DVD demonstrated the process clearly:• introductions• clarify the goal of the meeting• determine what the resident/family already knows• review current clinical status, prognosis and treatment options• discuss the resident’s wishes about their future care (if known)• deal with any conflict• summarise consensus, disagreements, decisions and plan• schedule follow-up meetings as needed.Key PointIt is particularly important to document the keyissues and outcomes of the palliative care caseconference.Equally, it should be clear who is responsible foractions/tasks and when they are expected to beresolved or completed.Thinking PointIn the DVD “All on the same page”, Penny, a palliativecare link nurse attended the case conference. Shenot only facilitated the process but also provided anupdate from the nurse’s perspective.Think about a resident you have recently cared forthat requires a palliative approach. What informationwould be important to mention from a nurse’sperspective?

26 • The Palliative Approach ToolkitCultural considerationsThinking PointWhat if, instead of being of Australian descent, Alfredwas from another country and spoke very little or noEnglish?How might this affect his care?Australia has a diverse, multicultural population. Over 22% ofAustralia’s population was born overseas, representing over200 different countries. 1 Residents and family members fromculturally and linguistically diverse (CALD) populations may haveparticular needs related to end of life care.Key PointHaving said this, do not make assumptions aboutcultural needs based on a resident’s language,religion or country of origin. All residents from aCALD background require careful assessment.Here’s some useful tips for getting it right:• Do not hesitate to ask about relevant cultural aspects ofcaring for a resident.• Be aware of customs that show respect.• Respect that people have different reactions towards deathe.g. for some Indigenous Australians speaking the name of adeceased person can cause considerable stress.• Communicate in ways that are appropriatee.g. avoid the use of jargon and translate information intoterms the family and resident can understand.• Just because someone can understand spoken English doesnot mean they can automatically read it as well.

27 • Self Directed Learning Package - Introductory Registered & Enrolled NursePainKey PointPain is a subjective experience, occurring when andwhere the resident says it does.The way that residents experience and make senseof pain is strongly influenced by their previousexperiences of pain, culture, spiritual beliefs, socialrelationships and other physical symptoms theymay be experiencing.SeeRecognise and assessAs a nurse, you have an important role in identifyingand assessing pain.Thinking PointAlfred has osteoporosis, osteoarthritis and fracturedhis hip three years ago.He is often heard asking careworkers and nurses ifit is time for his next dose of pain medication. Heasks for assistance with most activities of daily livingbecause the pain is “terrible”.• What is the best way to assess Alfred’s pain?• How do you normally identify if a resident haspain?• Do you use an assessment tool? Do you write downwhat a resident says?

28 • The Palliative Approach ToolkitIf the resident can communicateAsk the resident if they have any pain.Key PointIf pain has been identified, use the ModifiedResident’s Verbal Brief Pain Inventory (M-RVBPI)for an INITIAL comprehensive overview of theresident’s pain. 2It has been developed specifically for use inresidential aged care facilities (see Module 3).Tips:• Older people may deny that they are experiencing ‘pain’. Tryusing other terms like ‘ache’, ‘soreness’ or ‘discomfort’.• Most pain in older people is related to activity. Ask about painwhen they are active e.g. moving, transferring, being turned inbed, not when they are at rest.• Allow enough time for the resident to think about thequestion and reply.• Ask more than one question: ‘does it hurt anywhere?’, ‘do youhave any aching or soreness?’, or ’do you have any pain ordiscomfort’?Severity of pain can be assessed by asking the resident to ratetheir pain on a zero to ten scale where zero is no pain and ten isthe worst imaginable. 2If the resident cannot communicate or has acognitive deficitOne of the most difficult aspects of caring for the resident whocannot communicate or is cognitively impaired is identifyingwhether they are experiencing pain.Thinking PointWhat would happen if Alfred was unable tocommunicate his pain?How would you know if he was experiencing pain?How would you know if a treatment to manage thepain had been effective?Do you use a pain assessment tool for residents whocannot communicate?Key PointEveryone has their own pain threshold and it isunhelpful and unfair to compare the scores ofdifferent residents. Instead, compare a resident’sindividual scores across time.Key PointThe most effective method to assess pain inresidents who cannot communicate is to observebehaviours and facial expressions.

29 • Self Directed Learning Package - Introductory Registered & Enrolled NurseThinking PointThink of a resident you have cared for with advanceddementia or a communication deficit whom youthought might be experiencing pain. Have youobserved any of the following?• whimpering, groaning or crying• looking tense, frowning, grimacing, lookingfrightened• increased confusion, refusing to eat, alteration inusual behaviour patterns• perspiring, flushed or pale skin, abnormaltemperature, pulse or blood pressure• skin tears, pressure areas, arthritis, contractures,previous injuries.Thinking PointWhich of the following do you think will get the bestresponse?Nurse to GP:‘Alfred is reporting a new pain in his right hip. He saysit is severe, usually 5/10 but walking increases thisto 8/10. It wakes him at night if he rolls over in bed.We have tried hot packs, massage and regular simpleanalgesia but it is no better’.Is much better than:‘Alfred has got pain. You need to see him to sortit out’.These pain behaviours and physical cues are measured in theAbbey Pain Scale. We recommend the use of this scale forpeople who are unable to communicate (see Module 3).SayReport your assessmentTry and provide as much information as possible whenpassing on clinical information to a GP or senior nurse.This will allow them to decide how urgently they needto review the resident.

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31 • Self Directed Learning Package - Introductory Registered & Enrolled NurseDoManage the problemNon-pharmacological therapiesKey PointCombining pharmacological and nonpharmacologicaltreatment strategies is moreeffective than a single approach.Non-pharmacologicalIt may be possible to manage a resident’s pain with some simpleyet effective interventions.Thinking PointWhen you are developing or reviewing a resident’spain care plan, consider if it provides enoughdirection for careworkers on:• Positioning: Is the resident lying or sitting in acomfortable position?• Manual handling: Are position lifters and otherequipment positioned to prevent pain? Does theresident have to twist or stretch their joints ormuscles abnormally when being transferred?• Complementary and alternative medicine: Whattherapies or strategies might help manage the painother than medication?Consider the use of superficial heat or a TENS unit.Please noteSuperficial cold is not indicated for pain in the elderly. 2Pharmacological therapiesAs a nurse, you are responsible for the medications youadminister. It is vital that you understand the general principlesand pharmacology of managing pain.Key PointConsult “Therapeutic Guidelines: Palliative Care”for additional and comprehensive prescribingrecommendations.Version 3 of these guidelines is included in thePA Toolkit.Basic principlesBy mouthPrescribe and administer analgesia by the oral route unless theresident has a pre-existing condition that makes this impracticale.g. ongoing nausea, vomiting, bowel obstruction or dysphagia,general functional decline.By the clock• It is better to administer analgesia regularly (around the clock)for baseline pain than wait for the resident to ask for it or asyou consider it necessary.• Short acting ‘as required’ PRN medications should bereserved for breakthrough doses of analgesia or if the pain isintermittent and predictable (incident pain).• Administer analgesia 30 minutes before activities thought toprovoke or exacerbate pain e.g. pressure area care, wounddressings, physiotherapy, and hygiene procedures.

32 • The Palliative Approach ToolkitBy the ladderProceed from a non-opioid, to a weak opioid, and then to a strongopioid, with adjuvant medications added as needed at any stage.Thinking PointImagine Alfred presents with a new pain in his hipthat he rates as severe.Do you think it reasonable to start him on a simpleanalgesic first then move up to a stronger morepotent opioid over time?Key PointIt is not necessary to start at the bottom of theladder. Consider the presenting pain severityreported by the resident.Opioids• Start with low doses of short acting opioids and titrateup slowly after evaluating its effect on pain scores untilsatisfactory relief is achieved.• Only then should sustained/controlled release preparationsbe commenced e.g. oxycodone (Oxycontin), morphine (MSContin, Kapanol) or fentanyl (Durogesic).• Do not use sustained/controlled release preparations for acutepain or breakthrough dosing.Figure 1The World Health Organisation (WHO) analgesic ladder forpharmaceutical treatment of pain 16Pain under controlStrong pain - strong opioids formoderate to severe pain,non-opioid adjuvantIncrease in painModerate pain - weak opioids formild to moderate pain,non-opioid adjuvantIncrease in painMild pain - non-opioid adjuvantKey PointThe parenteral dose of morphine is approximatelyone-third of the oral dose. 12,13If a resident was taking 30mg oral morphine/24hrsbut now cannot swallow, they would only needapproximately 10mg parenteral/24hrs to have anequianalgesic effect.

33 • Self Directed Learning Package - Introductory Registered & Enrolled NurseSide effects of opioids can often be anticipated and treatedor avoidedChanging to another opioid or another route of administrationmay be necessary if still troublesome.Adjuvant analgesicsAlfred not only takes regular paracetamol and a weak opioid forhis pain, he is also prescribed a tricyclic antidepressant for hissciatic pain.This and other medications such as corticosteroids,anticonvulsants and benzodiazepines can supplement analgesicsor control symptoms that can exacerbate the perception of pain(e.g. inflammation, oedema, anxiety etc.)Myths about opioidsSpend time with the resident or family to dispel commonmyths about opioids. Sometimes residents, familymembers and even aged care staff may have concernsabout these medications.It is important to know that, when used correctly, opioidmedicines:Do not lead to addiction or dependenceOpioid medicines are not addictive when used for pain.Addiction only occurs when people have no pain andthey abuse opioid medicines.Do not hasten deathMorphine and other opioid medicines are for improvinglife — not hastening death. Some people fear that beingprescribed opioid medicines means that they’re closer tothe end. However, relieving pain changes the quality-oflife— not its length.Do not cause terrible side-effectsAll medicines can have side effects. The side effects ofopioid medicines (constipation, drowsiness, nausea, drymouth) are usually manageable.WriteKey PointThe type and cause of pain will determine which, ifany adjuvant medications are needed.Consult “Therapeutic Guidelines: Palliative Care”for additional and comprehensive prescribingrecommendations.Version 3 of these guidelines is included in thePA Toolkit.Document your actionsAvoid general statementsPOOR COMMUNICATIONGOOD COMMUNICATIONEvaluation of PRN analgesia‘Resident states pain has reduced to 2/10‘with effect’ or ‘effective’.score (was 5/10)’.Note to GP‘Alfred has a new pain in R) hip. Says‘Please review Alfred ASAP re pain in hip’. its severe, average 5/10, walking = 8/10.Wakens him at night if he rolls over in bed.Have tried hot packs, massage and regularsimple analgesia so far but no better’.ReviewEvaluate and reassess as necessaryThinking PointYou identified that Alfred has pain and conducted anassessment. You’ve updated his care plan to reinforceappropriate manual handling techniques and somemassage at night. This morning you discussed withAlfred’s GP about a regular analgesic order. Great job!Can you tick this off your list? Not quite yet.There is an important question to answer:Did your strategies work?A formal scheduled review using the Modified Resident’s VerbalBrief Pain Inventory (M-RVBPI) or Abbey Pain Scale may bemore valuable than frequent, brief impressions. 2

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35 • Self Directed Learning Package - Introductory Registered & Enrolled NurseNutrition andhydrationOne of the big worries that Alfred’s daughter, Sarah, had at thepalliative care case conference was that Alfred might starve todeath if he is unable to eat and drink. Remember that Sarah’smother was fed through a gastrostomy tube after she hada stroke. This continued for three weeks before she died ofpneumonia.SeeRecognise and assessAlfred is drowsy and needs prompting to accept a drink from acup and straw.He only eats a few mouthfuls of food and sometimes coughswhen he swallows. Alfred is dying and this is causing his eatingand drinking problems. This is often a difficult and emotionaltime for families and can sometimes be hard for staff to manage.Key PointAt the end of life the body is beginning to shutdown because of the dying process, not because ofthe absence of food and fluids.Family members often find it difficult to distinguishbetween ‘not eating as part of the dying process’and ‘not eating as bringing about the dyingprocess’.

36 • The Palliative Approach ToolkitBiochemical testsBiochemical tests can assist in determining the cause of apotentially reversible dehydration.Thinking PointAlfred is in the terminal stage and appearsdehydrated. Palliative care is often about rationalisingand reducing the number of invasive or burdensometests and procedures so why consider bloodtests now?Alfred was always clear that he did not want artificialnutrition or hydration at the end of life. Determiningthat he is clinically dehydrated or has an electrolyteimbalance will not change the focus on quality-of-lifemeasures and symptom management.Key PointOnly investigate something if the result will changethe care being provided.Key PointFluid intake charts alone are not recommended forassessing dehydration. They are not an accurateway of determining dehydration unless they alsotake into account urine output, perspiration andother fluid losses.Helping families understandThe PA Toolkit contains a brochure “Understanding the DyingProcess” which can be given to family members when theresident is in the palliative or terminal phase.Table 3 provides a brief segment from the “Understandingthe Dying Process” brochure. This brochure is included in thePA Toolkit and we recommend you familiarise yourself withthe document.Table 3Segment from “Understanding the Dying Process” brochureMost people lose their appetite in the last few weeks of life. Thisis a very natural and normal part of the dying process becausemetabolism is slowing down and the body requires less nutrition.At this time your instincts may be to try and feed the personin order to keep up their strength. The giving of food is oftensymbolic of loving and nurturing and to deprive someone ofthis may feel like neglect. However, as the person becomesincreasingly weak and drowsy, swallowing and digesting food andfluids often becomes harder and can place strain upon the body.Whilst the person may have a reduced oral intake, it is importantto maintain good oral care. Regular moistening of the mouthand lips will add to the person’s comfort.SayReport your assessmentThinking PointWhich of the following do you think will get the bestresponse?Nurse to GP:‘Alfred reports that he has had trouble swallowingfor a few days. Careworkers observed that he wascoughing when eating his cereal this morning’.Is better than:‘Alfred is having problems eating’.

37 • Self Directed Learning Package - Introductory Registered & Enrolled NurseDoManage the problemDiligent hand feeding and offering drinks frequently is importantfor all residents. 4If Alfred becomes unable to swallow, staff should cease offeringfood and drink, instead focusing on excellent mouth care.When a resident cannot swallow food or fluids by themselves, itis possible to provide these by artificial means such as through atube (PEG tube) or SC (subcutaneous cannula) ‘drip’.Decision makingThere is no simple answer to whether these interventions are rightor wrong. The benefits of artificial nutrition or hydration need tooutweigh the potential burden and side effects for the resident.Residents and family members cannot make the best decisionsif they do not have enough information. Conversations with thenurse and doctor about the positive and negative aspects ofartificially providing food or fluids are very important at this stage.Artificial nutritionKey PointFor residents requiring a palliative approach,there is no evidence that tube feeding prolongslife, improves comfort or quality-of-life, preventsaspiration pneumonia, leads to better nourishmentor decreases the risk of pressure sores. 6Although artificial hydration can be useful to treat reversiblecauses of dehydration such as over treatment of diuretics,unintended sedation from medications or recurrent vomiting ordiarrhoea, it is not normally used when a resident is expected todie within 48 - 72 hours.Thinking PointThink about how you feel if you forget to have a drinkduring your eight hour shift at work. Do you feel alittle drowsy, have a headache, dry mouth or dizzinessif you stand up quickly? Perhaps you just feel thirsty.Having a drink makes you feel better because itmoistens your mouth.Similarly, moistening the mouth of a resident who can no longerswallow fluids will keep them comfortable as much as or moreso than a ‘drip’.Key PointMedication side effects, oxygen therapy andmouth breathing can cause a dry mouth. Artificialhydration does not usually relieve the feeling ofdry mouth and can actually worsen respiratorysecretions, incontinence, vomiting, swelling(oedema) or breathing difficulties.You will learn more about the importance of oral care in a latersection of this learning package.Artificial hydrationThinking PointAlfred is unconscious and you would not be surprisedif he dies in the next two to three days. A careworkeris upset that Alfred cannot drink. He says ‘How badmust it be for Alfred being so dehydrated, he shouldhave a saline drip’.Do you agree with his comments?

38 • The Palliative Approach ToolkitWriteDocument your actionsDocument enough information to allow others in themultidisciplinary team a clear picture of the clinical situation.Avoid general statementsPOOR COMMUNICATION‘Evaluation of artificial hydration’.GOOD COMMUNICATION‘Resident denies thirst or discomfort,mouth moist and intact, urinary outputstill moderate’.ReviewEvaluate and reassess as necessaryJust because artificial nutrition or hydration has been starteddoes not mean that it should be continued until the residentdies.• Artificial nutrition or hydration needs to be reviewed regularlyto ensure it is still the most appropriate intervention for theresident.• If artificial hydration is commenced, clear criteria andtimelines for evaluation need to be documented.• At the end of life assessment should occur daily. What mayhave been appropriate a week ago may not be if they are nowlikely to die in the next 48-72hrs.

39 • Self Directed Learning Package - Introductory Registered & Enrolled NurseOral careThe ageing process, even when uncomplicated by illness,creates changes in the body which may combine to decreaseoral health. As a resident approaches the end of their life,especially when they stop eating or drinking, oral carebecomes even more important.SeeRecognise and assessNurses need to complete and document a comprehensivebaseline assessment of the resident’s oral cavity using the OralHealth Assessment Form (see Module 3).Key PointCareworkers should be directed to check aresident’s oral cavity at least daily for problems andreport them to a nurse. e.g. whenever assisting withfeeding, providing fluids, or conducting mouth care.Potential problems may include:• bad breath• sore mouth and gums• lip blisters/sores/cracks• difficulty eating• broken teeth• bleeding gums• reports of pain inmouth/lips• tongue coated orabnormal colour• excessive food leftin mouth• mouth ulcer• refusing oral care• swelling of face/mouth• dentures broken/lost. 11Dry mouth (xerostomia) is the most common oral problem atthe end of life. 11

40 • The Palliative Approach ToolkitSayReport your assessmentResidents get the best outcomes when you provide clearinformation about the resident.Thinking PointWhich of the following do you think will get the bestresponse?Nurse to GP:‘Alfred has a very dry mouth and oral candida. Itseems to have become worse since commencingopioid analgesics last week. He has candida on histongue and in the corners of her lips. Please reviewhim for some anti fungal medication. We will continuewith frequent oral care’.Is much better than:‘Alfred has problems with his mouth. You better takea look’.DoManage the problemThe best clinical outcomes will be achieved if care plansare developed after careful assessment of the resident’soral cavity.Thinking PointAlfred’s medications cause a dry mouth, heoccasionally uses oxygen and often sleeps with hismouth open. He has a ‘sore’ spot on his gum and histongue is coated. What could you do to help Alfredwith his dry mouth?Dry mouth (xerostomia)• moisten oral cavity with frequent rinsing and sipping of water• apply water-based moisturiser to lips• discourage strong cordials, juices or sugary drinks• reduce caffeine intake• stimulate saliva with tooth friendly lollies• encourage resident to drink water after meals, medicationsand other drinks and snacks• use saliva substitutes such as a water spray or an oral balancegel or liquid. 11Pain or ulceration• help the resident to rinse or swab their mouth with warmsaline three to four times a day until resolved• check the fitment of dentures• avoid spicy or acidic foods or food with sharp edges• offer cold, soft food• local or systemic analgesics may be required• medical review if not resolved within seven days. 11Coated tongue, mucosa or teeth• remove debris with a soft toothbrush or mouth swab• help the resident to rinse or swab their mouth with warmsaline three to four times a day until resolved• brush tongue gently with soft toothbrush. 11

41 • Self Directed Learning Package - Introductory Registered & Enrolled NurseOral care in the final days of lifeIn the final scenes of the “All on the same page” DVD, Alfred hasonly hours or days left to live. He cannot swallow food or fluids,is very drowsy, and breathes through his mouth. His tongue andlips are dry.Thinking PointThink about when you have a dry mouth. When youmoisten it with water, how long does it take untilthe dryness returns? Not very long? Perhaps fiveminutes?Imagine you are Alfred who relies on you to providethis comfort measure for him.As a resident approaches death they lose the ability to feedthemselves or have a drink. Eventually swallowing becomesdifficult and unsafe. Functionally they cannot clean their teethor oral cavity by themselves. Often this is when a ‘mouth care’trolley or tray is seen in the resident’s room.Key PointEvery time you attend to a resident:Apply dry mouth products: e.g. water spray, oral balance gel orliquid via mouth swabs.Apply water based lip moisturisers: Do not use petroleum basedproducts (e.g. vaseline) as they canincrease the risk of inflammationand aspiration pneumonia; alsocontraindicated during oxygentherapy. 11Key PointSome preparations may damage oral tissues orincrease the risk of infection.Do not use mouthwashes and swabs containing:• lemon and glycerine• sodium bicarbonate (high strength)• preparations containing alcohol (Listerinemouthwash) or hydrogen peroxide• pineapple or other acidic fruit juices. 11

42 • The Palliative Approach ToolkitWriteDocument your actionsDocument enough information to allow others in themultidisciplinary team a clear picture of the clinical situation.Avoid general statementsPOOR COMMUNICATIONEvaluation of interventions ‘with effect’ or‘effective’.GOOD COMMUNICATION‘Resident commenced two days ago onantibacterial and topical analgesic therapyfor mouth ulcer in upper right side oforal cavity. Ulceration almost healed.Tolerating more solid foods’.ReviewEvaluate and reassess as necessaryThinking PointYou identified that Alfred cannot swallow anymoreand documented a risk assessment. When you enterhis room, you always swab his mouth and apply lipbalm. Great job! Can you tick this offyour list? Not quite yet.There is an important question to answer: Did yourstrategies work?You can check the effectiveness of your management strategiesby checking Alfred’s mouth (as detailed in the SEE sectionprevious).Encourage careworkers to report any concerns to nursing staff.

43 • Self Directed Learning Package - Introductory Registered & Enrolled NurseDeliriumDelirium in older people is often overlooked or misdiagnosed,especially at the end of life. It can be distressing not only for theresident but for family and health workers.SeeRecognise and assesstThinking PointWhen you started your shift Alfred was his usualself, quite alert with only minor memory impairment.Towards the end of your shift you notice Alfred hasbecome very drowsy. He is mumbling nonsense about“catching chickens” and keeps trying to get out ofbed. He cannot tell you where he is and does notrecognise his daughter when she comes in to visit.Three days ago he was diagnosed with a urinary tractinfection.• Which of the information above indicates thatAlfred may be suffering a delirium?• What might have caused Alfred to becomeconfused?Delirium is a condition where:• the resident’s behaviour and thinking is disorganised• they struggle to focus, sustain or shift their attention• sometimes (but not always) hallucinations or delusions arepresent• it can develop over a short period of time and generallyfluctuates during the course of the day. 14Delirium usually only lasts for a few days but may persist forweeks or even months. 14Dementia on the other hand is a long term impairment ofthought processes (cognition) with clear consciousness.

44 • The Palliative Approach ToolkitKey PointUse the Confusion Assessment Method (CAM) toolto help determine if a residents symptoms are likelyto be caused by a delirium. 14A copy of this tool can be found in Module 3.Delirium can be caused by a combination of factors includingdehydration, medication side effects, uncontrolled pain andinfections.Consider possible causesDelirium is often caused by a combination of factors including:• medicationse.g. opioids (especially with renal impairment), tricyclicantidepressants, benzodiazepines, corticosteroids• any drug with anticholinergic activity• drug withdrawale.g. opioids, alcohol, nicotine, benzodiazepines• metabolice.g. dehydration (diuretics use, hot weather), hypoglycaemia,hypercalcaemia• urinary retention or constipation• infections (especially with indwelling urinary catheter)• kidney or liver failure• sensory impairmentsSayReport your assessmentBe as clear and detailed as possible.Thinking PointWhich of the following do you think will get the bestresponse?Nurse to GP:‘Albert is confused, agitated and distressed. He cansee spiders on the walls, is plucking bed sheets withhis hands and is disoriented in time and place.He has had more opioid breakthrough analgesicdoses than usual today and is febrile 37.9deg. Hisurine from IDC is malodorous’.Is much better than:‘Alfred is confused. You need to see him to sort it out’.• uncontrolled pain. 13,14

45 • Self Directed Learning Package - Introductory Registered & Enrolled NurseDoManage the problemIt may be appropriate to treat the cause of delirium (if it isknown). However, at the end of life simple measures aimed atmanaging the symptoms may be preferable.Thinking PointImagine you are Alfred. It is night-time and you arelying in your bed. It is dark, no one is around and youare confused, frightened and not sure where you are.You hear noises outside your door that sometimesdisturb you. Perhaps you want to get out of bed tofind somewhere better to be.Look at the list below. Which of these measuresmight help you feel less confused and anxious?Environmental strategies 14• appropriate lighting• minimise noise especially at night• provide a clock that the resident can see• avoid room or location changes and keep personal andfamiliar objects in view• modify the environment to minimise the risk of injurye.g. low bed in the lowest position with cot sides down, bedagainst the wall, potential hazards such as beside tablesremoved.Clinical strategies 14• address anxiety; residents with delirium are often veryfrightened• manage discomfort or pain• minimise sensory deficits by providing and assisting withhearing and visual aidse.g. clean spectacles and remove wax deposits in hearing aids,check batteries are fresh and hearing aid is turned on• encourage the presence of people known to the residente.g. family and friends and regular staff members• reassure and reorientate resident• explain delirium and reassure the resident and their family• AVOID use of physical restraints• use interpreters and communication aids for residents withCulturally and Linguistically Diverse needs (CALD)• promote relaxation and sufficient sleepe.g. assisted by massage and/or encouraging wakefulnessduring the day• minimise use of indwelling catheters• review medicatione.g. cease or reduce all non essential medications, swap to adifferent opioid analgesic medication.Medications 13,14The primary aim is to reduce the resident’s distress by targetingany agitation or hallucinations.Antipsychotic drugs such as haloperidol, risperidone orolanzapine are considered first line therapy.Benzodiazepines do not improve cognition but may helpassociated anxiety. Short acting agents such as lorazepam ormidazolam are usually indicated.Key PointBenzodiazepines may worsen delirium if not used incombination with an antipsychotic drug.Sometimes agitation and delirium can cause severe distress anddoes not respond to medical management, especially in theterminal phase. This is a challenging problem and may requiresedation as the only appropriate intervention.Key PointConsult “Therapeutic Guidelines: Palliative Care”for additional and comprehensive prescribingrecommendations.Version 3 of these guidelines is included in thePA Toolkit.

46 • The Palliative Approach ToolkitWriteDocument your actionsDocument enough information to allow others in themultidisciplinary team a clear picture of the clinicalsituation.Avoid general statementsPOOR COMMUNICATIONEvaluation of interventions ‘with effect’ or‘effective’.GOOD COMMUNICATION‘Resident has not reported hallucinationsin the last two hours and physicalplucking at the bed sheets has stopped’.ReviewEvaluate and reassess as necessaryIt is important to evaluate the effectiveness of the care youdeliver to residents.Every time you provide care to a resident, ask yourself:• Does it seem to be effective?• Is it doing any harm?Key PointDelirium can develop quickly, regular assessment isimportant.Regular use of the Confusion Assessment Method(CAM) tool may be more beneficial than frequentbrief subjective impressions.

47 • Self Directed Learning Package - Introductory Registered & Enrolled NurseEnd of life carepathwayTerminal care is care focused on the final days or weeks of life.Thinking PointIn the final scenes of the DVD, Alfred is likely to diewithin days or hours.• Have you experienced the death of a resident?• Were you aware that the resident was dying?• What signs of approaching death did you notice?Residents may experience some or all of the following whenapproaching death:• rapid day to day deterioration that is not reversible• requiring more frequent interventions• becoming semi-conscious with lapses into unconsciousness• increasing loss of ability to swallow• refusing or unable to take food, fluids or oral medications• irreversible weight loss• an acute event has occurred requiring revision of treatmentgoals• profound weakness• changes in breathing patterns. 3What is an end of life care pathway?An end of life care pathway is a set of forms and protocolsthat acts as a ‘road map’ to guide the care provided by doctors,nurses and careworkers in the last week of a resident’s life.There are several pathways used in RACFs and hospitals.We recommend the ‘Residential Aged Care End of Life CarePathway (RAC EoLCP)’. This pathway can be downloaded fromthe “PA Toolkit: Forms CD”.

48 • The Palliative Approach ToolkitThinking PointAlfred looks like he may die in the next day or so. Heis not eating and drinks only a few sips of water eachshift. He spends most of the time sleeping and needsassistance with all of his ADLs. When he is asked aquestion he sometimes opens his eyes but does notspeak. This has been a significant change for theworse from one week ago.Do you think he is displaying signs of approachingdeath?This chart is completed by nurses and careworkers directlycaring for the resident.• The first part refers to common symptoms experienced in thelast few days of life and the maintenance of syringe drivers.• The second part consists of common comfort care measuresfor people who are dying.• The third part consists of psychosocial support measures forpeople who are dying.Support for resident and family membersKey PointIt is the role of the nurse to initiate the use of theEnd of life Care Pathway, with GP approval. Theresident’s family must also be contacted.The doctor is responsible for completing section 2 of thepathway which covers medical interventions and advance careplanning• Stopping non-essential medications.• Changing how other medications are administered. Often thisis by injection and can include medication for pain, nausea,anxiety or difficult breathing.• Stopping any non-essential clinical interventions andobservations e.g. blood pressure monitoring, weighs, bloodsugar monitoring.What is your role when a resident requires terminal care?Your role includes working through the care management pageof section three which prompts you to review and plan for:• spiritual/religious/cultural needs• communication with family members• comfort planning.Thinking PointAlfred’s daughter Sarah has met you many timeswhen she visits her father. Today she approaches youand starts crying. She asks you how long you think itwill be until Alfred dies. What could you do?Family members often spend many hours with the resident atthis time. They may share with you their sadness and grief. Theymay ask you questions about what is happening.Utilising a tool, such as the Bereavement Risk Index 7 can identityif family members are likely to have problems with grief and lossissues. It allows nurses to provide the most appropriate support,information and perhaps referral to other supports dependingon the score.Key Processes (Module 2) has a copy of the ModifiedBereavement Risk Index. 7Then you can set up and begin the daily comfort care chartwhich lists a set of comfort focused observations that arereviewed a minimum of four hourly.

49 • Self Directed Learning Package - Introductory Registered & Enrolled NurseWhen the resident diesWhile all residential aged care facilities have their own policiesand procedures related to the time of death, the after death caresection of the pathway provides a checklist of tasks that needto be completed and ensures that all the relevant people areinformed of the death.Grief and lossReminisce with family and friends of the deceased resident ifyou feel comfortable to do so. It shows you saw the resident asan individual, not just “another resident”.Acknowledge the grief of those around you. If family membersare visibly upset, you can say ‘It must be hard for you; it is adifficult time…’ Showing family members you are upset e.g.crying is all right.Self-careKey PointNo one ever complained that someone cried; butthey have complained that no one seemed to care.Close relationships can develop between nurses and residents.It is important to be aware that when a resident dies, you maygrieve as well. You are not expected to be a robot, and it ispossible that you may feel sad, angry, upset, confused, guiltyor even relieved at this time. Feelings of grief are different foreveryone and are a normal reaction to a loss.The following suggestions may assist you with your grief:• ask the family’s permission to attend the funeral• talk to your supervisor or colleagues about how you arefeeling• seek support from a professional counsellor.SUCCESS!You have completed Section 2 of the learning package.Please go on with the quiz.

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51 • Self Directed Learning Package - Introductory Registered & Enrolled NurseSelf-directed learning package:Introductory nurses quizDon’tKnowSection 1TrueFalse1 With a palliative approach, the focus is on managing symptoms and increasing quality-of-life rather thancuring illness.2 A palliative approach discourages discussion about death and dying as it may upset the resident.3 A resident completes a written Advance Directive. This is considered a legal document.4 Shortness of breath is the same thing as dyspnoea.5 It is a good idea to ask a resident to rate his shortness of breath by asking him to count how manybreaths he takes a minute.6 A resident is always short of breath on exertion. You should administer a PRN dose of morphine mixtureafter she has a shower and is recovering on her bed.Section 27 Family members have the right to determine if a resident should attend a palliative care case conferenceon the grounds that ‘it will only upset him/her’.8 Regardless of the language a resident speaks or where they were born their care needs are thesame when they are dying.9 If a competent resident tells you they have pain, is it good practice to ask how severe it is on a scale of 0 to 10.10 Facial expressions and vocalisations can indicate if a resident is experiencing pain.11 A resident was taking an average of 30mg of oral morphine every 24hrs. Now that he cannot swallow the GPhas changed the order to morphine 30mg/24hrs via a subcutaneous infusion pump. This is an appropriate order.12 Every resident who cannot eat or drink should be fed through a tube (e.g. PEG gastrostomy).13 Pineapple juice on a mouth swab is an effective way of treating a dry but otherwise clean mouth forresidents who cannot swallow anymore.14 A resident has not responded to environmental or nursing interventions for her delirium. A benzodiazepinewould be the most appropriate drug to control hallucinations.15 A combination of changes in breathing patterns, decreased consciousness and irreversible weight loss maybe signs of approaching death.

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54 • The Palliative Approach Toolkit6. A resident is always short of breath on exertion. You should administer a PRN dose of morphine mixtureafter she has a shower and is recovering on her bed.• Residents with dyspnoea benefit from having a preventative plan of care that decreases the distress andanxiety of dyspnoea before it occurs.• This resident would benefit from this medication at least ½ hour before showering (just as analgesicsare given prior to activities that are known to cause pain).TrueFalseSection 27. Family members have the right to determine if a resident should attend a palliative care case conferenceon the grounds that ‘it will only upset her’.• As nurses our primary role is to provide resident centred care which includes advocating on the resident’s behalf.• Perhaps the resident would be upset about what is discussed, but it is up to them (while they are cognitivelyable to make decisions competently) to decide whether they will attend.• Most residents choose to attend case conferences and can provide insights into their condition that family andstaff may not have known about otherwise.• If a resident is likely to become distressed or fatigued, consider holding the case conference in their roomwhere they can rest on the bed. Ask their permission to continue the discussion elsewhere with theremainder of those attending.8. Regardless of the language a resident speaks or where they were born their care needs are the samewhen they are dying.• All residents require careful assessment to ensure that assumptions are not made about cultural needs based ona resident’s language, religion or country of origin. Similarly, the care needs for members of our indigenouspopulation (Aboriginal and Torres Strait Islanders) requires careful assessment and planning.9. If a resident tells you they have pain, is it good practice to ask how severe it is on a scale of 0 to 10.• The use of horizontal or vertical pain scale which asks the person to rate 0 (no pain) or 10(worst pain possible) is a good way to assess pain for residents who do not have severe cognitiveimpairment.10. Facial expressions and vocalisations can indicate if a resident is experiencing pain.• The Abbey Pain Scale lists whimpering, groaning, and crying as possible indicators of pain.

55 • Self Directed Learning Package - Introductory Registered & Enrolled Nurse11. A resident was taking an average of 30mg of oral morphine every 24hrs. Now that he cannot swallow theGP has changed the order to morphine 30mg/24hrs via a subcutaneous infusion pump.This is an appropriate order.• The parenteral dose of morphine is approximately one-third of the oral dose.• The dose ordered by the GP is effectively tripling the previous dose and is likely to result in adverse effects.TrueFalse12. Every resident who cannot eat or drink should be fed through a tube (e.g. PEG gastrostomy).• There is no evidence that tube feeding prolongs life, improves comfort or quality-of-life, prevents aspirationpneumonia, leads to better nourishment or decreases the risk of pressure sores.• Although artificial hydration can be useful to treat reversible causes of dehydration, it is not normally usedwhen a resident is expected to die within 48 - 72 hours.13 Pineapple juice on a mouth swab is an effective way of treating a dry but otherwise clean mouth forresidents who cannot swallow anymore.• Pineapple contains an enzyme that chemically cleans but is too strong and damaging if usedundiluted and for long periods.• Do not use mouthwashes and swabs containing:- lemon and glycerine- sodium bicarbonate (high strength)- preparations containing alcohol or hydrogen peroxide- pineapple or other juices.14 A resident has not responded to environmental or nursing interventions for her delirium. A benzodiazepinewould be the most appropriate drug to control hallucinations.• Benzodiazepines do not improve cognition but may help associated anxiety.• Benzodiazepines may in fact worsen delirium if not used in combination with an antipsychotic drugsuch as haloperidol.15. A combination of changes in breathing patterns, decreased consciousness and irreversible weight lossmay be signs of approaching death.Three or more of the following indicates an End of Life Care Pathway may be appropriate and that theresident is likely to be approaching death:• rapid day to day deterioration that is not reversible• requiring more frequent interventions• becoming semi-conscious with lapses into unconsciousness• increasing loss of ability to swallow• refusing or unable to take food, fluids or oral medications• irreversible weight loss• an acute event has occurred requiring revision of treatment goals• profound weakness• changes in breathing patterns.

56 • The Palliative Approach ToolkitBibliography – SDLP - Nurse (Introduction)1Australian Institute of Health and Welfare (2010) Australia’s Health 2010. Cat. no. AUS122. Canberra: AIHW2Australian Pain Society (2005) Pain in Residential Aged Care Facilities: ManagementStrategies. Viewed 14 July 2009 http://www.apsoc.org.au/owner/files/9e2c2n.pdf3Brisbane South Palliative Care Collaborative, Queensland Health/ Griffith University(2010a) Residential Aged Care End of Life Care Pathway (RAC EoLCP), Brisbane4Commonwealth of Australia (2006a) Guidelines for a Palliative Approach inResidential Aged Care – Enhanced Version, Canberra5Commonwealth of Australia (2006b) Guidelines for a Palliative Approach inResidential Aged Care – Navigational Tool, Canberra6Finucane TE, Christmas C, Travis K (1999) Tube feeding in patients with advanceddementia: a review of the evidence. JAMA. 282(14):1365-707Kristjanson LJ, Cousins K, Smith J, Lewin G (2005) Evaluation of the BereavementRisk Index (BRI): A community hospice care protocol for bereavement support.International Journal of Palliative Nursing. 11(12): 610-6188Merl H and Bauer L (2010) Planning what I want now. Viewed 12 September 2010http://www.planningwhatiwant.com.au9Palliative Care Council of South Australia Inc. (1996) Good Palliative Care Plan.10Queensland Government (2004) Advance Health Directive (Form 4). Department ofJustice and Attorney General, Viewed 12 May 2010 http://www.justice.qld.gov.au/__data/assets/pdf_file/0007/15982/advance-health-directive.pdf11SA Dental Service (2009) Oral Health Planning Guidelines. Viewed 7 August 2010http://www.sadental.sa.gov.au/Portals/57ad7180-c5e7-49f5-b282-c6475cdb7ee7/BOHRCProfessiona-Portfolio-10-2-11.pdf12Therapeutic Guidelines Ltd (2007) Therapeutic Guidelines: Analgesia, Version 5.Melbourne13Therapeutic Guidelines Ltd (2010) Therapeutic Guidelines: Palliative Care, Version 3.Melbourne14Victorian Government Department of Human Services (2006) Clinical PracticeGuidelines for the Management of Delirium in Older People. Viewed 14 July 2009http://www.health.vic.gov.au/acute-agedcare/delirium-cpg.pdf15Winton T (2009) Breath. Penguin, Sydney16World Health Organisation (2009) WHO’s Pain Ladder. Viewed 16 June 2009 http://www.who.int/cancer/palliative/painladder/en/17World Health Organisation (2010) WHO Definition of Palliative Care, Viewed 26September 2010 http://www.who.int/cancer/palliative/definition/en/

57 • Self Directed Learning Package - Advanced Registered & Enrolled NurseSelf directed learning package 2Nurse (Advanced)

58 • The Palliative Approach Toolkit

59 • Self Directed Learning Package - Advanced Registered & Enrolled NurseThe PalliativeApproach ToolkitThe Palliative Approach (PA) Toolkit is designed to assistresidential aged care facilities to implement a comprehensive,evidence-based palliative approach of care for residents.The PA Toolkit contains:Education resources• Three self-directed learning packages1. Nurse (Introduction)2. Nurse (Advanced)3. Careworker (Introduction)• Two educational DVDs1. “A palliative approach in residentialaged care: Suiting the needs”2. “All on the same page: Palliative carecase conferences in residentialaged care”• Five educational flipchartsThe flipcharts are for short sessional inserviceeducation targeting careworkersand are mapped to the clinical caredomains.Module 1: Integrating a palliativeapproachModule 1 focuses on policies, systems andresources to support a palliative approachin a residential aged care setting.Module 2: Key processesModule 2 focuses on three key processesessential in implementing a palliativeapproach:• Advance care planning• Palliative care case conferences• End of life care pathwayModule 3: Clinical careModule 3 focuses on the assessment andmanagement of five clinical care domains:• Pain• Dyspnoea• Nutrition and hydration• Oral care• DeliriumResource materialsThe PA Toolkit includes several importantreference publications:• “Guidelines for a Palliative Approachin Residential Aged Care – EnhancedVersion”• “Therapeutic Guidelines: Palliative Care,Version 3”• “Now What? Understanding Grief”brochure• “Understanding the Dying Process”brochure• “Invitation and family questionnaire -Palliative care case conference”For the purposes of this toolkit, nurse will refer to registered and enrolled nurseand careworker will refer to personal careworker, health careworker andassistant-in-nursing.

60 • The Palliative Approach Toolkit

61 • Self Directed Learning Package - Advanced Registered & Enrolled NurseSDLP-2Self-directed learningpackage: AdvancedRegistered &Enrolled NurseWelcome to this advanced learning package about providing apalliative approach to residents in residential aged care facilities(RACFs). Completion of this SDLP including the quiz attracts 3+hours of professional development points. This package is partof the PA Toolkit. If you require more information to help youwork through this package, the three modules of the PA Toolkitprovide additional information.Aims of this learning packageThe aim of this learning package is to provide nurses withadvanced knowledge and skills to provide a palliative approachin residential aged care facilities (RACFs).Learning objectives:After working through this package you will be able to:• Support and assist residents, family members and RACF staffin the advance care planning process.• Describe how you can contribute to the planning, facilitationand follow-up of a palliative care case conference.• Identify common clinical problems, provide relevant carewithin your scope of practice and report them to a GP asneeded.• Understand the benefits of an end of life care pathwayand your role as a senior nurse during the final week of aresident’s life.Pre-requisitesIt is a pre-requisite that you have completed the introductorySDLP for nurses.What do I have to do?You will be asked at specific times to watch two DVDs:• “Suiting the needs” (produced by Palliative Care Australia)• “All on the same page” (developed specifically for this toolkit).

62 • The Palliative Approach ToolkitYou will have already seen both of these when completing theintroductory learning package but we encourage you to reviewthem again. They highlight important aspects of the informationyou will be reading about in this package. Each runs for less than15 minutes. To complete this package you need access to a DVDplayer so make sure you have that before you commence.We will ask you to reflect on the case studies of Bob and Alfredand to take note of important points. Throughout the packageyou will see these symbols:Thinking PointThinking Points indicate that you should stop andthink about the information, questions or ideas beingpresented. We encourage you to write down yourthoughts but this is not compulsory.Key PointKey Points highlight information or an activity thatis critical to your learning in this package.ActivityUnlike the introductory learning package, we ask you toundertake some activities. That is, you will be asked toapply what you learn to your workplace.AssessmentAt the end of this package are a series of questions that willassist you to demonstrate your understanding of the care of aresident who requires a palliative approach. You are encouragedto talk with your supervisor or education facilitator if you areunsure about anything in this package.How long will this take?We anticipate it will take you 3 hours to complete the SDLP. Thisestimate includes viewing time for the two DVDs (approximately26 minutes).Key PointPlease note for the purposes of this toolkit, nursewill refer to registered and enrolled nurses andcareworker will refer to personal careworkers,health careworkers and assistants-in-nursing.OK… LETS GET STARTEDKey PointBefore reading any further, watch the DVD “All onthe same page”. It is approximately 14 minutes longand you may want to take some notes of key points.While watching the DVD you were introduced to Alfred and hisdaughter Sarah.Case Study - AlfredAlfred is 82 years old and a retired school teacher. Alfred hastwo children: Andrew who lives overseas and Sarah who livesclose by and visits twice weekly.Alfred’s wife Alice was admitted to hospital after a severestroke and remained there, fed through a gastrostomy tubeuntil she died three weeks later of pneumonia.After Alice died, Alfred remained at home for nine monthswith increasing support from home care services. Numerousfalls and increasing difficulty with activities of daily living ledto admission 18 months ago to a residential aged care facility.Alfred was a heavy smoker until aged 65 but has notsmoked since.He has osteoporosis, osteoarthritis and fractured his hipthree years ago.He is experiencing short term memory loss but not enoughto lose his ability to make decisions. Alfred also has ChronicObstructive Airways disease (emphysema) and is unable towalk 20 metres before needing to rest. He has been admittedto hospital three times in the last six months for infectiveexacerbations of this condition requiring steroids andantibiotics. Alfred has not returned to his previous functionallevel after each episode.We will use Alfred and Sarah’s story to highlight importantpoints as well as using some other case studies along the way.

64 • The Palliative Approach ToolkitCase study – AnnaAnna is 82 years old. She was born in Germany but has lived in Australia for over30 years. She was admitted to the dementia unit shortly after the death of herhusband.Before her diagnosis of dementia, Anna had made it clear to her GP that she wouldalways want to be resuscitated in the event of a respiratory or cardiac arrest. TheGP had clearly documented these wishes in her notes.Anna has one adult child, Helen, who has found it extremely difficult to accept herfather’s death and her mother’s declining mental capacity.Helen holds the legal right to make decisions about her mother’s care and is theimmediate ‘next of kin’ for her mother. Helen, however, has been reluctant tobecome involved in discussions regarding planning for her mother’s care. Contacthas been made with Anna’s grandson David who has agreed to assist staff withmaking a care plan for Anna. Despite her mental confusion and ill health, Annarecognises David and appears to agree with his suggestions.Over a short period of time, Anna’s physical health has begun to deteriorate. Shesuffers more frequent angina attacks and has become wheelchair bound as a resultof a fall that caused her right hip to fracture. She also has been experiencing lowoxygen saturation, tiredness and shortness of breath.This morning, you are asked to review Anna by the careworker. Anna is clearly unwelland you note a drop in blood pressure, pale skin and obvious shortness of breath.You contact the doctor and her family to relay this change in condition. When Helenarrives, she tells you that she does not wish to have her mother resuscitated ortransferred to hospital.Thinking PointWhat do you think will happen to Anna and why?This is a common scenario in RACFs. It is a good example of whythere has been a move from simply asking about resuscitation toa broader approach of advance care planning.Key PointA key advantage of having an advance care planis that they can extend a resident’s autonomy.However the process is about more than justgetting a form filled in or directives documented inthe clinical notes. Discussing these with family andother parties is equally important.Substitute decision makingDiscussions about advance care planning ideally should involvethe resident when s/he is capable of making decisions abouttheir preferences for living and dying well. But what about thoseresidents who are no longer deemed competent to make thesedecisions or are unable to express their wishes?Thinking PointWhat if Anna had not communicated her wishes toher GP before she experienced significant cognitivedecline? Do decisions about care and treatmentautomatically defer to the family?If a resident is not competent to make decisions, they cannotcomplete an advance health directive or legally appointsomeone to advocate on their behalf.

66 • The Palliative Approach ToolkitAssigning a substitute decision makerLet’s assume for a moment that Anna’s dementia is only mildand she still has the capacity to make decisions for herself (asassessed and documented by her GP).ActivityRefer, again, to your relevant State or Territorylegislation, regulations or tribunal (hint: guardianshiprelated to advance care planning and substitutedecision making).Thinking PointYou may be called upon to guide residents andfamily members through the maze of advance careplanning. Think about how you would respond tothese questions:In your State or Territory:• What would Anna need to do in order to appoint afamily member as a SDM?• What documents would she need to complete?• What types of decisions could this person NOTmake?• When would they be able to make decisions forAnna?• Under what circumstances does the appointmentof a SDM end?• According to your State or Territory legislation, canAnna have more than one SDM?Advance DirectivesAn advance directive is a document that sets out personalwishes about future medical treatment if a person loses thecapacity to make these decisions.Key Point• An advance directive is only one part of thewhole process of advance care planning. Thevalue of planning is in the ongoing discussion andinvolvement of the resident and their family inregard to making decisions that have an impacton the resident and their rights to dignity andchoice.• An advance directive provides a clear statementof a person’s views about medical interventionand treatment.• This may assist family members, substitutedecision makers, health care providers and othersby giving them insight into a person’s views andpreferences for treatment.• The person writing the advance directive needsthe opportunity to consider current medicaltreatments and technologies and to discussthe matter with their GP and other health careproviders (including you).ActivityA common question is “So what should I write in thisdirective”?Review the example of an advance directive inSelf-directed learning package: Introductory Registered& Enrolled Nurse.Thinking PointHave you thought about what your health care wisheswould (or would not) be if you were incapacitatedor incompetent and unable to make decisions foryourself?

67 • Self Directed Learning Package - Advanced Registered & Enrolled NurseAssisting families with understanding levels of careKey PointResidents and families can only make INFORMEDchoices if they understand what is being said and allthe possible options.In the DVD “All on the same page”, it states that the foundationof ‘good discussion’ revolves around a mutual understanding ofterminology and phrases. Here are some helpful terms that mayfeature in advance care planning discussions.Advance care plan terminology 4TermTerminalIrreversibleIncurablePermanentunconsciousness (Coma)Post comaunresponsiveness (PCUor PSV)ExplanationA condition that will result in death - the resident can reasonably beexpected to die from the disease.A condition that is unable to be turned around - there is no possibility thatthe resident will recover e.g. motor neurone disease.A condition which has no cure.A condition whereby brain damage is so severe that there is little or nopossibility that the resident will regain consciousness.An irreversible condition by where wakefulness and sleep cycles are present,as well as other bodily functions, but the person is totally unconscious,unaware of surroundings and unable to experience pain.Clarifying ‘life-sustaining’ measures 4Life sustaining measuresCardiopulmonaryresuscitation (CPR)Assisted ventilationArtificial feeding andhydrationDialysisWhat occurs at this levelTreatment aimed at providing artificial ventilation (air flow) via mouth, maskto mouth, or tube down the throat to maintain breathing. Cardiac (heart)compression is by pumping compressions to chest or electrical stimulation.(Statistics regarding survival rates may be useful to discuss).A machine (ventilator) is used to assist the resident to breathe, if theycannot breathe spontaneously.Provision of fluid and or liquidised nutrients by artificial means, if theresident is unable to swallow, eat or drink. Feeding occurs via tubes insertedvia the nose, via direct insertion of a tube into the stomach or via a tubeinserted into a vein.Treatment aimed at replacing the function of kidneys i.e. removal of toxicwaste products from the body.

69 • Self Directed Learning Package - Advanced Registered & Enrolled NursePalliative care caseconferencesA palliative care case conference is a meeting held between aresident (and/or their family) and their health care providers.The aims are to:• identify clear goals of care for the resident including a reviewof any advance care plans• provide a safe environment where issues and questions aboutend of life care can be raised and appropriate strategiesagreed upon for future care.Sometimes there may be differing views about end of life care.Having everyone with a stake in a resident’s care ‘on the samepage’ is vital to achieve the best outcomes for the resident.Key PointPalliative care case conferences should not be:• used as an opportunity for health careprofessionals to debate a resident’s medicalstatus; in this situation, a separate meetingshould be convened prior to the case conference• saved for ‘crisis’ situations; a preventativeapproach is advocated where issues areanticipated before they become major dilemmas.Thinking PointImagine Alfred is a resident at your facility. As a nursewith a special interest in the palliative approach, youhave been asked to organise and facilitate a palliativecare case conference to plan care to respond to hisrecent deterioration.PlanningA palliative care case conference may take a few weeks toorganise. Pre-planning is essential. Having one person with theoverall responsibility for this ensures nothing is overlooked.ActivityWorking through the planning check list (see Module 2),think carefully how you would specifically undertakeeach of these tasks in the facility where you work.Review all forms related to case conferences in Module 2.Determine if there are any changes needed to integratethem into your facility. Add your organisation’s logo- make changes to the templates as desired – i.e. getthem ready for use.Are there any barriers or issues that may get in the wayof your planning?

70 • The Palliative Approach ToolkitGenogram symbols: Family relationshipsIn a genogram, a male is represented by a square and afemale by a circle. A cross over the shape indicates anindividual is deceased.Know the resident’s family and social networkOften at times of crisis and especially at the end oflife, family members may visit that you have not metbefore.MaleFemaleDeceasedMaleA marital relationship is represented by:DeceasedFemaleOne method of clarifying a resident’s social network iswith a genogram.The genogram usually displays three generationsand covers the basic family structure. It mayalso include information on individual familymembers (e.g. significant dates or ages) and familyrelationships.The married couple has divorced:The married couple has separated:One of the spouses died while married (widowed):A sibling relationship is represented by:List children in birth order beginning with the oldest:BiologicalchildAdoptedchildFraternaltwinsIdenticaltwinsStillbirth Miscarriage Abortion Pregnancy

71 • Self Directed Learning Package - Advanced Registered & Enrolled NurseInterpretation of Alfred’s genogram:Alfred was married to Alice who died during theirmarriage leaving Alfred a widower. The genogramindicates that Alice passed away in 2006. Alfred andAlice had two children: Andrew and Sarah. AndrewGenogram: Alfred CooperErnest,died 1942Ivy,died 1987is married to Julie and has one son, Matthew. Sarahis married to John and has two sons, Cameron andAndrew. Cameron is married to Sandra. Alfred hadtwo older sisters – Jennifer who died in childhood andMoya who is still living. The genogram also tells us theAlfred lost his father at an early age. Note that an efforthas been made to add in dates significant to Alfred(birthdays, wedding anniversary and dates people died).Jennifer,died aged 10 yearsMoya,aged 85Alfred, aged 82 yearsResidentDOB: 24/3/1927Anniversary: 7/8/1949Alice,died 13/6/2006DOB: 20/12/1928Andrew,aged 58 yearsJulie,aged 58 yearsJohn,aged 56 yearsSarah,aged 54 yearsDOB: 5/9/1955Matthew,aged 24 yearsCameron,aged 26 yearsSandra,aged 26 yearsAndrew,aged 20 years

72 • The Palliative Approach ToolkitNow it is your turn.Review the case study of Judy and develop arepresentative genogram (on the next page).(Yes it’s complex… but so are many of the families youmeet in your professional role every day).Case study: JudyJudy has been a resident of your facility for four months.Judy’s elderly husband Paul is being cared for by theirdaughter Rhonda and her husband Derek. Paul suffered astroke a number of years ago and is becoming increasingconfused and distressed because he misses his wife and isshowing signs of early dementia.Judy’s daughter, Rhonda (65 years) is working full time buthas taken long service leave to care for her father. Derek andRhonda have one child Robert (aged 32) who is married toGail. Gail has recently been diagnosed with breast cancer andis undergoing treatment. Gail’s parents (Steven and Pauline)have moved into the family home to help care for Gail andRobert’s four sons. Pauline’s parents Jenny and Geraldare also residents of your facility and have formed a closefriendship with Judy.

73 • Self Directed Learning Package - Advanced Registered & Enrolled NurseDraw Judy’s genogram in the box below:DocumentationIt is particularly important to document the key issues andoutcomes of a palliative care case conference.Equally, it should be clear who is responsible for actions/tasksand when they are expected to be resolved or completed.Follow upOften, in times of stress, residents and family members maynot remember all that is discussed. Suitable resources cancomplement the information you provide in the case conference.Two useful brochures, “Understanding the Dying Process” and“Now What? Understanding Grief” are included in the toolkit.Key PointWritten information should not be used as asubstitute for personal conversations with residentsor family members.

74 • The Palliative Approach Toolkit

75 • Self Directed Learning Package - Advanced Registered & Enrolled NurseDyspnoeaDyspnoea is an awareness of uncomfortable breathing. Itcan also be called breathlessness or shortness of breath.The evidence suggests that 70% of people receiving a palliativeapproach experience dyspnoea in the last six weeks of life. 5 Inthe terminal phase of ageing and/or illness, fear of suffocationmay be the most troubling symptom. This may significantlyaffect the ultimate place of death. The experience of dyspnoea(i.e. breathlessness) may not be directly attributed to a disease,because other factors such as anxiety exacerbate the symptoms.• Shortness of breath becomes more frequent in residentsas their disease progresses. It is associated with a poorerprognosis, and is usually multi-factorial in people withadvanced disease.• Dyspnoea frequently worsens as death approaches.• Dyspnoea can impair a resident’s activities of daily living, limitmobility, increase anxiety, and can leave them feeling fearfuland socially isolated.• It can also be a sign of a deteriorating condition in residentsreceiving a palliative approach.• Shortness of breath (dyspnoea) is frightening for patients.They may fear suffocation, and they often associate dyspnoeawith impending death. Dyspnoea can be both longstandingand progressive (related to the disease progression), or it canbe an acute problem appearing suddenly.• Dyspnoea triggers panic, and panic exacerbates dyspnoea, sothe pattern becomes cyclical.• Dyspnoea may also be a distressing and frighteningsymptom for the family. This can lead to increased anxietyfor the resident which may increase their dyspnoea. Familymembers’ perceptions of a resident’s suffering can influencehow the family makes meaning of, and come to terms with,the dying experience of the resident.

76 • The Palliative Approach ToolkitAssessmentThinking PointDespite dyspnoea being an increasingly commonproblem for residents who require a palliativeapproach, it is rare to see a care plan that focusesspecifically on management of their dyspnoea.Perhaps this is because many RACFs choose tostructure their care plans around the Aged CareFunding Instrument (ACFI) questions, which onlymentions oxygen therapy in the complex care section.ActivityReview the dyspnoea section in Module 3.ManagementCase Study – AlfredAlfred is nearing the end of his life.Alfred’s main problems are his airways disease, milddementia and progressive decline in functional status. Herequires continuous oxygen, prescribed at 2liters/minute vianasal specs.This morning, carerworkers report Alfred seems to be moreshort of breath than usual during and after his shower. Younote that he has had similar episodes over the last week aswell. He is angry that he can’t find the energy to sit with hismates in the common room for the weekly sing-a-long.Today it appears to be more severe and he has what appearsto be a wheeze and occasional cough.Thinking PointDo residents in your facility who report dyspnoeahave a comprehensive assessment done as part ofroutine practice?• How often is a resident’s dyspnoea assessed?• Do you assess dyspnoea prior to and following anintervention?Key PointBecause health professionals tend to under-report aresident’s dyspnoea, competent residents should beencouraged to rate the severity themselves.Thinking PointWhat additional information might you need beforedeciding on a management strategy?ActivityList the strategies that may help Alfred’s shortness ofbreath. Then separate these interventions into short-termand longer-term strategies, keeping in mind that Alfredis already receiving a palliative approach to his care.Alfred’s GP has decided to treat the dyspnoea with a lowdose of PRN oral morphine. The aim is to changeoverto a sustained release preparation once the doserequirements are clear.His daughter Sarah is concerned about the potential foraddiction of morphine.

77 • Self Directed Learning Package - Advanced Registered & Enrolled NurseThinking PointHow would you respond to Sarah’s concerns?This is a common concern for residents and familymembers. It is often helpful to discuss the pointsoutlined in the Palliative Care Australia pamphlet‘Facts about morphine’ http://www.palliativecare.org.au/portals/46/resources/FactsAboutMorphine.pdf 14You notice that there are reports of dyspnoea in Alfred’s casenotes but no opioids have been administered. When youquestion the RN responsible, he scoffs at the idea that morphinecan help dyspnoea. “That can’t be true, it depresses respirations.I learnt that when I worked on a surgical ward years ago”.Thinking PointHow would you respond to the RN?Unfortunately many health professionals are not aware of thecurrent evidence based interventions for dyspnoea.ActivityIt may be helpful to look on the CareSearch website forthe one page summary about dyspnoea. This wouldbe a good starting point for a discussion with this nurseabout the potential benefits of opioids for dyspnoea.

78 • The Palliative Approach Toolkit

79 • Self Directed Learning Package - Advanced Registered & Enrolled NursePainWhat is pain?Thinking PointThink about a time you experienced pain. What wordswould you use to describe it? How did it impact onyour day-to-day activities?The International Association for the Study of Pain defines painas “an unpleasant sensory and emotional experience associatedwith actual or potential tissue damage, or described in terms ofsuch damage”. 9So pain not only impacts on the person’s physical being but alsotheir psychological being.Key PointPain is a subjective experience, occurring when andwhere the resident says it does.Common causes of pain in the elderlyThe common causes of pain in the elderly include:• cancer• cardiovascular disease• peripheral neuropathy secondary to diabetes• arthritis. 2Cancer painIn residential aged care facilities in Australia, a common cause ofpain is cancer and the leading cause of death is cancer.• The frequency and type of pain varies depending on the stageand primary site of the cancer.• Moderate to severe pain occurs in one-third of people(30–40%) at the time of diagnosis and two thirds (60-100%)with advanced disease.• Most individuals with advanced cancer have more thanone pain. 2

80 • The Palliative Approach ToolkitKey PointResidents may often have more than one type andlocation of pain. This is especially common withadvanced cancer pain.The following story illustrates a resident with advanced diseasewhere metastases are causing pain in three different locations.Case Study: JudyJudy (87 years) has been a resident of your facility for 4months and is dying.She was diagnosed with advanced bowel cancer threemonths ago and her disease has progressed rapidly. She hasdeveloped a fungating rectal mass as well as metastasis inher liver and bones (right hip and ribs). She complains of painin her ‘bottom’ when she is sitting on a chair, intermittent hippain when she walks or moves in bed and also a ‘discomfort’in the right upper quadrant of her abdomen occasionallyradiating to her right shoulder.The areas of pain identified in this case study include her rectallesion, bone pain (worse on movement), and pain from her livercausing referred pain to her shoulder.Barriers to effective pain assessment andmanagementThinking PointWhat factors may interfere with Judy’s painassessment?Barriers to indentifying pain• concurrent clinical problems• cognitive impairment• multiple pain problems• lack of objective biological markers for chronic pain that canbe used to test if pain is present• communication deficitse.g. language, vision, dysphasia• cultural norms in the expression of paine.g. Western Anglo-Saxon “stiff upper lip”• false beliefse.g. “People with dementia don’t feel pain”; “It’s normal tohave some pain as you age”; “Opioids hasten death”• fear of the meaning of pain especially when linked to canceror a terminal illness• inexperience of healthcare workers in OBJECTIVE assessmentof pain. 2

81 • Self Directed Learning Package - Advanced Registered & Enrolled NurseTypes of painPain can be classified in a number of ways:Acute or chronic painAcute pain• due to acute injury/illness• may last days/weeks, has a predictable andlimited duration• clinical signs are obvious: increased bloodpressure and heart rate; sweating, pallor• anxiety• inactivity until recovery• temporary use of analgesics.Chronic pain• results from chronic pathological process• gradual onset and becomes progressively worse• usually no sympathetic clinical signs• may appear depressed, withdrawn with lethargy• requires treatment of underlying disease andregular use of analgesia.Key PointIn palliative care, pain is usually chronic and theobvious signs such as pallor, sweating, or changesin blood pressure may not be seen.Remember pain may be due to the resident’sdisease, their treatment, or a co-morbid illness.

82 • The Palliative Approach ToolkitIncident Pain• pain results from a specific event e.g. wound dressing,movement• requires analgesia PRIOR to the event that causes the pain.Key PointRemember to allow time for analgesia to workbefore undertaking the intervention.Breakthrough Pain• pain occurs between regular scheduled doses of analgesia• common in cancer pain• response should be to give an additional prescribedbreakthrough dose of analgesia• review/ reassess pain and treatment regime if doses areneeded repeatedly.PathophysiologyPain can also be classified according to its physiological causes.• Nociceptive pain occurs because of stimulation of nerves inthe skin and deep tissues called ‘nociceptors’.• Neuropathic pain is caused by the damage to the actualnerves themselves.Classification of pain 2,18Type Characteristics Descriptors ExamplesNociceptive - Somatic Well localised Gnawing, aching,throbbing, sharpSuperficial: pressuresoresDeep: bone fractureNociceptive - VisceralPoorly localised,sometimes referredDeep, squeezing,penetrating, pressureIntestinal or biliary colicNeuropathicCan follow dermatome/nerve distributionBurning, shooting,radiating, tingling,numbness, pins andneedles, deep achingPost herpetic neuralgia(shingles), spinal cordcompression

83 • Self Directed Learning Package - Advanced Registered & Enrolled NurseFactors affecting pain thresholdA person’s pain perception and experience are influenced bytheir mood, past pain experiences, social and physical situationand the meaning they give to both their illness and their pain.Factors that affect pain thresholdThreshold lowered• insomnia• fatigue• anxiety• fear• anger• depression• mental isolation.Threshold raised• relief of other symptoms• sleep• sympathy• understanding• relaxation• reduction in anxiety• analgesics.Thinking PointThink about the differences between these two lists.Can you recall a time where you noticed differencesin a resident’s mood after you encouraged them toparticipate in group activities, or someone sat andtalked to them about their fears?ActivityIdentify a resident who is experiencing pain.List two non-pharmacological strategies you can trial inthe next fortnight to assist with their pain:1.2.

84 • The Palliative Approach ToolkitPain assessmentUsing an evidence-based assessment tool establishes a sharedview of the resident’s pain experience and therapy goals. It canalso enhance your ability to tailor individualised interventions tothe pain situation.A pain assessment tool gives you a baseline from which toevaluate treatment interventions. It also gives the resident amore active role in dealing with their pain. Residents feel theirpain is being taken seriously which in itself can be beneficial.For residents who can communicate• The most accurate and reliable evidence of pain in residentswho can communicate (even with mild to moderate dementia)is self-reporting.• Assessment is often more accurate and useful whenundertaken during movement or transfer of the resident(rather than at rest).• Allow enough time for the assessment and for the resident toformulate a response to the questions.The following story illustrates the importance of listening to theindividual about their pain experience.Case Study: AlfredAlfred is 82, with a history of osteoporosis, arthritis and afractured hip, and has been living in your facility for almosttwo years.Some of the nurses describe him as a “complainer” and statethat he always “goes on” about his pain. These same nursesfeel that because he never “looks” like he has pain then hemust just want their attention so they avoid him.It is not until a new nurse starts at the facility and performsa comprehensive pain assessment that the GP prescribesappropriate analgesia. Alfred’s pain reduces from severe tomild and he becomes more interactive with other residents.Key PointIt is important to never make your own judgmentsabout the pain the resident is experiencing.Listen to what the resident describes andincorporate the use of a validated pain assessmenttool.Never presume to know what the resident isexperiencing; even two people with exactly thesame diagnosis will experience pain differently.

85 • Self Directed Learning Package - Advanced Registered & Enrolled NurseInitial assessmentModified Resident’s Verbal Brief Pain Inventory (M-RVBPI)A copy of this tool can be found in Module 3.• Although this tool is primarily utilised with competentresidents, it is also reliable and valid for residents who havemild dementia. You can enlist a careworker or relative to jointlyreport when there is moderate to severe dementia.• The M-RVBPI assesses physical and psychosocial factorsrelevant to pain in appropriate detail. Pain intensity and theeffectiveness of current treatments is also evaluated.• On average, it takes about seven minutes to administer.• The first question determines the need for further assessment.If the answer to the first question is ‘no’, no further questionsare indicated.• A body map records and defines the site of pain.This is helpful in evaluating the cause of pain.• The size of the area in which pain is felt, the shape(distribution) and travel path (radiation) also suggest theunderlying cause (for example, sciatica).• Identifying the location of the pain also guides the effectiveapplication of local treatments.• The remainder of the M-RVBPI looks at the impact of pain onactivity, mood, mobility, socialisation and sleep. 2Case Study: JudyJudy, who we met earlier, has advanced bowel cancer witha fungating rectal mass as well as metastasis in her liver andbones (right hip and ribs).You sit with her just after she’s been assisted with hershower. She looks like she wants to cry when you ask her ifshe has any pain.She describes:1. Severe pain in her ‘bottom’ when she is sitting on a chair.This stops her from going to the activities room to playbridge with her friends.2. Moderate hip pain when she walks or moves in bed (dropsto mild when lying still but never goes away completely).3. Mild discomfort in the right upper quadrant of herabdomen radiating to her right shoulder.Judy tells you that she always has some level of pain,especially in her hip.Thinking PointRefer back to the assessment you made of Judy’spain. How would you classify each pain she describes?Key PointCompleting an assessment is important BUT equallyimportant is doing something with the informationthat is obtained. Be sure to follow the action guideat the bottom of the M-RVBPI form.ActivityRead through the M-RVBPI and scoring instructions.Then complete the tool using the informationprovided about Judy.Ongoing assessmentPain rating scales are the best tools for ongoing pain assessmentand intervention evaluations.

86 • The Palliative Approach ToolkitKey PointAssessments need to be done:• at the point of contact with the resident, not atthe end of your shift• by careworkers and nurses• REGULARLY.For residents who cannot communicateAssessing pain with a resident with cognitive impairment ordementia requires different assessment methods.We recommend the Abbey Pain Scale which is based on directobservation of the resident as well as knowledge of their usualfunctioning and medical history. You will have read about this inthe introductory education package.Apart from using a tool, it is very important to collectobservations from people who are closely involved with theresident such as family members and careworkers.Pain managementKey PointCombining pharmacological and nonpharmacologicaltreatment strategies is moreeffective than a singular approach.We mentioned earlier that residents experience pain differentlyand that their perception of pain is influenced by their mood,past pain experiences, social and physical situation and themeaning they give to both their illness and their pain.Pharmacological approachesAs a nurse, you are responsible for the medications youadminister. It is vital that you understand the general principlesand pharmacology of managing pain.Comprehensive details of pharmacological painmanagement can be found in “Therapeutic Guidelines:Palliative Care (version 3)” - included in the PA Toolkit.Thinking PointDo careworkers undertake pain assessments inyour facility?If not, can you see any benefit in careworkerinvolvement?What barriers are there and how might youaddress these?

87 • Self Directed Learning Package - Advanced Registered & Enrolled NurseJudy seems to have pain most of the time. She is only prescribedas needed (PRN) analgesics and is rarely comfortable.Despite ever increasing doses of opioids, Judy’s hip pain doesnot seem to be getting any better.Thinking PointHow might you explain the problem to her GP whenhe next visits to ensure she gets more appropriateanalgesia?Judy has been taking paracetamol intermittently for severalweeks. Yesterday, her GP prescribed 20mg of sustained releaseoral morphine/day in response to reports of severe pain. Nightstaff report Judy feeling nauseous as well as slightly confusedwhen they spoke to her.Thinking PointWhy might this have happened?What would have been a better method of startingJudy on opioids?Judy’s daughter Rhonda visits the next day. She becomes angrythat her mother is taking morphine as “She needs to leave thisuntil later. If she starts on it now, it won’t work later and thenwhat will she do?”Thinking PointHow might you respond?You are doing the medication round. You notice that sincestarting on opioids, no one has been administering paracetamolto Judy. A colleague’s response is “She’s on the strong stuff now.She doesn’t need paracetamol as well.”Thinking PointWhy it is important to continue with non-opioidanalgesics?Thinking PointAre there any other pharmacological measures thatmay help?What are they and why are they more likely to beeffective?Key PointConcise answers to all of these questions are in the“Therapeutic Guidelines: Palliative Care (version 3)”- included in the PA Toolkit.Get into the habit of referring to it in your clinicalpractice.Non-pharmacological approachesYou are approached by some careworkers who want to knowwhat they can do to help Judy be more comfortable.ActivityWrite down some key points of what you wouldtell them.Make your instructions specific, detailed and concrete.Be sure to stay focused on their scope of practice.You notice that most evenings over the last week, around 11.00pm,Judy’s pain score seems to increase from 4/10 to 7/10 on a visualanalogue scale. Night staff have documented twice that Judywas teary. She couldn’t identify any one pain that was a particularproblem. Normally she can tell you the location of her pain.Thinking PointWhy might Judy’s pain be worse late at night? Whatstrategies would you use to address the situation?

89 • Self Directed Learning Package - Advanced Registered & Enrolled NurseNutrition andhydrationKey PointThe benefits of artificial nutrition or hydration mustoutweigh the potential burden and side effects forthe resident.Case Study – AlfredA careworker reports that Alfred, who normally has a goodappetite, is not eating his meals. He seems to have lostinterest in his food and is ‘withdrawn’. Alfred’s main problemsare his airways disease requiring oxygen, mild dementia, anda general decline in functional status.ActivityThe ‘MEALS ON WHEELS’ tool summarises specificnutrition and hydration issues prevalent in the elderlypopulation.Circle or mark which issues might be worth pursuingfurther with Alfred.MEALS ON WHEELS tool 12MedicationSide effects, amountEmotional problemsDepression, anxietyAnorexia (late onset anorexia nervosa)AlcoholismLate - life paranoiaSwallowing disordersOral factorsNot culturally appropriateFood, presentation or environmentWandering and other dementia-relatedbehavioursHyperthyroidism, hyperparathyroidism,hypoadrenalismEnteric problems (malabsorption)Eating problemsLow-salt, low-cholesteral dietsSocially inappropriateResident unable to feed themselvesTremors resulting in spillageTherapeutic dietsFood; environment; lack of interaction;inappropriate positioning of resident

90 • The Palliative Approach ToolkitAlfred continues to deteriorate despite his constipation resolvingand the increased attention he receives from careworkersduring meal times. He is now bed bound, eating only a fewmouthfuls of food when assisted by a careworker, and hasstarting coughing when he swallows. Thickened fluids also resultin coughing. Alfred is increasingly drowsy and needs significantprompting to accept a drink from a cup and straw.His daughter Sarah visits most days and tells you she thinksAlfred is just “not trying hard enough” to eat. She cajoles himand tries to spoon food into his mouth, even bringing food fromhome. Sarah contacts Alfred’s GP requesting a feeding tube sohe “doesn’t starve to death.”Key PointDeciding to withhold or withdraw artificial feedingor hydration needs to involve recognition of theemotional impact on family and staff, particularlycareworkers.You convene a palliative care case conference with Alfred, Sarah,Alfred’s GP and a careworker who regularly works with Alfred.Key PointProviding food for a loved one is often viewed asa way of expressing affection and concern. Whenfamily are unable to continue this function theybecome distressed and may feel they are neglectingthe resident.Family members may find it difficult to distinguishbetween “not eating” as part of the dying processand “not eating” as bringing about the dyingprocess.At the palliative care case conference, Sarah was very concernedthat Alfred would starve to death if he was unable to eat anddrink. Remember that Sarah’s mother (Alfred’s wife) wasfed through a gastrostomy tube after she had a stroke. Thiscontinued for three weeks and then she died of pneumonia.

91 • Self Directed Learning Package - Advanced Registered & Enrolled NurseThinking PointThink about how you would respond to Sarah’sinsistence that Alfred should go to hospital to have afeeding tube inserted.Hint: the Tube Feeding Decision Aid below may help.Tube Feeding Decision Aid 11Information to be provided to the resident andfamily should include:Common causes of eating and swallowing problemsin older persons:Technical considerations regarding placement anduse of PEG tubesPrinciples of substitute / proxy decision making (ifnot already discussed)The risks and benefits of tube feedingThe option of supportive / comfort care (e.g. handfeeding; responsive to resident’s requests regardingthe need for, or the refusal of, food and fluids); andSome considerations regarding futurediscontinuation of PEG tube (e.g. when and howoften will the need for the PEG tube be reviewed;who can request a review / discontinuation and isthere a process for this.)Steps to decision making should include:Guiding the resident and their family through whatthey have learned about PEG tubes:How to apply this knowledge to the resident’spreferences, personal values, and clinical situation:What is the resident’s situation?What would the resident want?How is the decision affecting the family?What questions need answering before the resident/ or their family can make a fully informed decision?Who should decide about PEG placement?When should the PEG be disbanded; andWhat is the resident’s / or his / her family’s overallthoughts about the decision?Alfred is unconscious and you would not be surprised if he diesin the next two to three days.This time it is a careworker who approaches you, upset thatAlfred cannot drink. He says that he feels terrible if he forgets todrink any fluids during a busy eight hour shift so “how bad mustit be for Alfred being so dehydrated?”Thinking PointHow would you respond to the careworker?We suggest you use the “Understanding the DyingProcess” brochure (found in the PA Toolkit) tofacilitate discussions with careworkers just as youwould with family members.Alfred is still alive the next day and his GP suggests thatsubcutaneous (s/c) fluids (hypodermoclysis) may be needed.ActivityList the possible benefits and burdens that need tobe taken into account when considering whether toadminister s/c fluids?

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93 • Self Directed Learning Package - Advanced Registered & Enrolled NurseOral careThe ageing process, even when uncomplicated by illness, createschanges in the body which may combine to decrease oral health.As a resident approaches the end of their life, especially whennot eating or drinking, oral care becomes even more important.ActivityLocate a copy of the Better Oral Care in Residential Careresource 17 in your facility.The professional portfolio was written to assist GPs andRNs to undertake oral health assessment and careplanning for people in residential aged care. While nottargeted specifically at palliative care, the principles arethe same.Case Study – AlfredAlfred is nearing the end of his life. His main problems arehis airways disease, mild dementia and general decline infunctional status. He requires continuous oxygen, prescribedat 2litres/minute via nasal specs.Four weeks ago he was commenced on amitryptiline 25mgnocte for depressive symptoms. Last week this was increasedto 50mg. He is using a fluticasone inhaler after a recentexacerbation of his airways disease.Careworkers report that Alfred, who normally has a goodappetite, is not eating as much as normal. He seems to havelost interest in his food and is ‘withdrawn’.You note that he has a full bottom denture and a partial topplate.ActivityList all the risk factors you can think of that may impacton Alfred’s oral health.

94 • The Palliative Approach ToolkitAssessmentAfter the reports of problems from the careworkers you conducta comprehensive oral assessment on Alfred.You notice his mouth is coated with food debris and early signsof candidiasis (thrush). His tongue is dry and coated. Alfredbecomes distressed when you attempt to look in the upper rightcorner of his mouth where you notice an ulcer on his gum wherethe denture has been rubbing.It would appear that careworkers are not routinely assessingAlfred’s mouth or providing the oral care he requires. His careplan covers only routine preventative oral care.ManagementKey PointOral care needs to be focused on the specificproblems highlighted during a comprehensiveassessment, not ‘one care plan fits all’.ActivityFor each of Alfred’s oral care problems, identify suitablemanagement strategies.Thinking PointWhy might Alfred’s mouth be in this condition?Consider the influence of Alfred, careworkers, nursesand the organisation as a whole.What steps could you take to address this shortfall incare. In particular, what could you do to ensure that thiswas an isolated incident and would not happen again?

95 • Self Directed Learning Package - Advanced Registered & Enrolled NurseDeliriumKey PointDelirium is distressing not only for the resident butfor family and health care workers.Delirium in older people is often overlooked andmisdiagnosed, especially at the end of life.Health care workers often find it difficult todifferentiate between depression, delirium, anddementia.AssessmentDelirium is a condition where the resident’s behaviour andthinking is disorganised. They struggle to focus, sustain orshift their attention. Sometimes hallucinations or delusions arepresent. It develops over a short period of time and generallyfluctuates during the course of the day. 19It is important to distinguish between delirium, dementiaand depression.

97 • Self Directed Learning Package - Advanced Registered & Enrolled NurseConfusion Assessment Method (CAM) Shortened Version Worksheet 6,7,8Name of resident:Date of Birth:Date: / / Time:I. ACUTE ONSET AND FLUCTUATING COURSEa) Is there evidence of an acute change in mental status fromthe patient’s baseline?b) Did the (abnormal) behaviour fluctuate during the day, that istend to come and go or increase and decrease in severity?II. INATTENTIONDid the patient have difficulty focusing attention, for example, being easilydistractible or having difficulty keeping track of what was being said?NoNoNoBOX 1YesYesYesIII. DISORGANISED THINKINGWas the patient’s thinking disorganised or incoherent, such as rambling orirrelevant conversation, unclear or illogical flow of ideas, or unpredictableswitching from subject to subject?IV. ALTERED LEVEL OF CONSCIOUSNESSOverall, how would you rate the patient’s level of consciousness?Alert (normal)BOX 3Vigilant (hyperalert)Lethargic (drowsy, easily aroused)Stupor (difficult to arouse)Coma (unarousable)Do any checks appear in box 3?NoNoBOX 2YesYesIf all items in Box 1 are ticked and at leastone item in Box 2 is ticked a diagnosis ofdelirium is suggested.This form can be downloaded from“PA Toolkit: Forms CD”.Adapted from: Inouye SK, vanDyck CH, Alessi CA, Balkin S, Siegal AP, Horwitz RI.Clarifying confusion: The Confusion Assessment Method. A new method for detectionof delirium. Ann Intern Med. 1990; 113: 941-948.Confusion Assessment Method: Training Manual and Coding Guide, Copyright 2003,Sharon K. Inouye, M.D., MPH.

99 • Self Directed Learning Package - Advanced Registered & Enrolled NurseConsider possible causes of deliriumDelirium is often caused by a combination of factors including:• medicationse.g. opioids (especially with renal impairment), tricyclicantidepressants, benzodiazepines, corticosteroids any drugwith anticholinergic activity• drug withdrawale.g. opioids, alcohol, nicotine, benzodiazepines• metabolice.g. dehydration (diuretics use, hot weather, hypoglycaemia,hypercalcaemia)• urinary retention or constipation• infections (especially with indwelling urinary catheter)• kidney or liver failure• sensory impairmentsActivityIdentify THREE non-pharmacological managementstrategies (see over for suggestions) that you would liketo implement or further develop in your facility.Think about how you might do this in easily achievable,concrete steps.For example, ‘pin up reminder notices in each unit’ ismore specific and concrete than ‘keep staff quiet atnight’.• uncontrolled pain. 18,19ManagementKey PointWhen a resident is approaching the terminalphase, it is not always appropriate to actively treatthe cause of delirium, even if the cause is known.Decisions need to be informed by the residentsprognosis and any advance directives about activetreatment.

100 • The Palliative Approach ToolkitEnvironmental strategies 19• lighting appropriate to time of day – windows with a view to outside, curtainsand blinds open during the day, and minimal lighting at night• quiet environment especially at night• provision of clock and calendar• avoid room changes• encourage family and friends to be involved in resident care• encourage family to bring in resident’s personal and familiar objects• staff caring for residents with delirium should establish a communication strategythat incorporates elements of both reality orientation and validation techniques• modify the environment to minimise risk of injury (nurse in a low bed with cot sidesdown, bed against the wall, potential hazards such as beside tables removed)• allow family members to stay with resident including overnight• endeavour to have the same staff members care for the resident during andacross shifts• information regarding the diagnosis, cause and management plan should becommunicated to the resident and their family.Clinical practice strategies 19• encourage/assist with eating and drinking to ensure adequate intake• ensure that residents who usually wear hearing and visual aids are assisted to usethem• regulation of bowel function – avoid constipation• encourage and assist with regular mobilisation unless the residents conditiondoes not warrant this• encourage independence in basic ADLs unless the residents condition does notwarrant this• medication review• promote relaxation and sufficient sleep – can be assisted by regular mobilisation,massage, encouraging wakefulness during the day• manage discomfort or pain• provide orienting information including name and role of staff members• minimise use of indwelling catheters• AVOID use of physical restraints• use interpreters and communication aids with CALD patients.Medications 19The primary aim of medications for delirium is to reduce theresident’s distress by targeting any agitation or hallucinations.Antipsychotic drugs are considered first line therapye.g. haloperidol, risperidone or olanzapine.Benzodiazepines do not improve cognition but may helpassociated anxietye.g. short acting agents such as lorazepam or midazolam areusually indicated.Key PointBenzodiazepines may worsen delirium if not used incombination with an antipsychotic drug.When all else failsSometimes agitation and delirium can cause such severe distressand does not respond to medical management, especially in theterminal phase. This is a challenging problem and may requiresedation as the only appropriate intervention.ActivityPlease spend some time reading the section on deliriumin “Therapeutic Guidelines: Palliative Care (version 3)” -included in the PA Toolkit.

101 • Self Directed Learning Package - Advanced Registered & Enrolled NurseEnd of life carepathwayTerminal care is focused on the final days or weeks of life. The Residential Aged Care End of Life CarePathwayThinking PointThe Residential Aged Care End of Life Care Pathway (RACIn the final scenes of the DVD “All on the same page”Alfred is dying.Think about a resident you have cared for who wasapproaching the last weeks of their life.Did everyone involved (family, nurses, careworkers, care in place.GP) agree or understand that the resident was dying?What was it about the resident that led you to believe detail essential steps in the care of patients with a specificthey may die soon?clinical problem. In the case of the RAC EoLCP the specificclinical problem is terminal care.Diagnosing dyingActivityResidents may experience some or all of the following whenThe “PA Toolkit: Forms CD” has a copy ofthey are approaching death and requiring terminal care:the Residential Aged Care End of Life Care Pathway.1. rapid day to day deterioration that is not reversibleYou might like to refer to this copy as you work2. requiring more frequent interventionsthrough this section.3. becoming semi-conscious with lapses into unconsciousnessThinking Point4. increasing loss of ability to swallow5. refusing or unable to take food, fluids or oral medicationsIf yes, what benefits have you seen in your practice6. irreversible weight lossand those you work with?7. an acute event has occurred requiring revision oftreatment goalsBenefits of using the RAC EoLCP8. profound weakness• promotes evidence and consensus-based, best practice9. changes in breathing patterns. 3 palliative careEoLCP) is a document designed to help make consensus basedbest practice care possible for residents at the end of life. It isintended to support residential aged care facility staff in theirefforts to ensure those dying will do so with the best availableCare pathways are structured multidisciplinary care plans whichHave you used this pathway in your clinical practice?• provides documented evidence of care as it is delivered• ensures high quality, standardised care for all residents• supports internal quality assurance and audit processes.

102 • The Palliative Approach ToolkitWhat is your role when a resident requiresterminal care?Key PointIt is the nurse’s role to initiate the use of the RACEoLCP.GP agreement must be obtained and the familyneeds to be contacted.Your role as a senior nurse also includes working through thecare management page of section three which prompts you toreview and plan for:• spiritual/religious/cultural needs• communication with family members• comfort planning.The PA Toolkit and introductory education package outline indetail how to use the End of Life Care Pathway. We will now focuson some other related issues that more senior and experiencednurses are more likely to have to deal with at this time.Cultural considerationsAustralia has a rich multicultural population.Culture refers to a set of beliefs, values, norms and practicesthat are learned, shared, and dynamic. They influence people’sthoughts, expressions and actions in a patterned way.Residents and family members from culturally and linguisticallydiverse populations may have particular needs that membersof the aged care team should address in order to provide acompassionate and effective palliative approach to care. Thesemay become increasingly important as the resident enters theterminal phase.Thinking PointWhat cultural groups are represented in the residentsand staff at your facility?Key pointJust because someone was born in a particularcountry or speaks a different language does notmean that we can assume their religious, spiritual orsocial rituals and preferences are the same as thosedescribed in a reference book. ALWAYS seek thisinformation early to avoid problems.Grief and bereavementWhen a resident dies, loss and grief may be experienced by theaged care team, the family, and other residents.Loss is the severing or breaking of an attachment to someone orsomething, resulting in a changed relationship.Grief is the normal response to loss. It includes a range ofresponses: physical, mental, emotional and spiritual. They areusually associated with unhappiness, anger, guilt, pain andlonging for the person or thing.Bereavement is the total reaction to a loss and includes theprocess of healing or ‘recovery’ from the loss. Each person willgrieve and recover in their own way.Case study: JudyJudy has been a resident of your facility for four months.Judy’s husband Paul is being cared for by their daughterRhonda and her husband Derek. Paul suffered a stroke anumber of years ago and is becoming increasing confusedand distressed because he misses his wife and is showingsigns of early dementia.Rhonda is working full time but has taken long service leaveto care for her father. Rhonda has a history of alcohol abusewhich has strained family relationships in the past and sheand Rhonda were estranged for nearly 20 years. In the fouryears since they have been reconciled, there have beenintermittent periods of tension but Rhonda has worked hardat being a responsible daughter and parent.Judy is expected to die within the next week. You haveconcerns about how her daughter Rhonda will handle Judy’sdeath. Rhonda has been expressing a great deal of guiltfor the pain she caused her mother with her alcohol abuse.You also know Rhonda is dealing with a lot of stress in herimmediate family, including a daughter-in-law’s cancerdiagnosis. Rhonda has been snapping at the staff in yourfacility. She also becomes quite distressed and teary whenyou update her on her mother’s condition.ActivityComplete a Modified Bereavement Risk Index forRhonda using the form on the next page. Based onRhonda’s score what support would you offer?

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105 • Self Directed Learning Package - Advanced Registered & Enrolled NurseSelf-directed learning package:Advanced nurses quizTrueFalseDon’tKnow1 The resident and/or family must provide the nurse with information concerning their wishes about end oflife care at the initial assessment and care planning interview after admission.2 There is no way of recording treatment preferences for a resident who has advanced dementia and did notrecord their wishes on a legal document when they still had mental capacity.3 Regular reviews of advance care plans mean checking if there is a form in the clinical records from when theresident was admitted.4 The “Understanding the Dying Process” brochure is appropriate to give to family members at a palliativecare case conference.5 It is appropriate to accept a careworker estimation of the severity of a resident’s dyspnoea if they cannotremember what rating score a resident provided them.6 Attitudes and beliefs of residents, family and health professionals can be barriers to effective pain management.7 A resident with chronic pain that is moderate to severe intensity will look pale, perhaps be sweating and havechanges in their heart rate and/or blood pressure.8 A tingling, burning pain that runs around one side of the chest wall between two ribs is most likely to beneuropathic in origin.9 It is up to the nurse to assess the condition of a resident’s oral health each day.10 A resident with dementia exhibits fluctuating confusion and wakefulness. This is best attributed to thedementia itself.11 Alfred has not responded to environmental and nursing interventions for his delirium. You should questionthe GP’s order of a dose of diazepam to help manage Alfred’s hallucinations.12 Urinary tract infections that are the cause of a delirium should always be treated.13 The GP is responsible for initiating the use of an End of Life Care Pathway when a resident is expected to diein the next week.14 A resident born in India lists their religion as Buddhist. This means that they must not be given stronganalgesics or sedatives, especially at the end of life as it is important for the mind to be clear.15 If Rhonda’s Modified Bereavement Risk Index score is eleven, you only need to give her a copy of the“Now What? Understanding Grief” booklet.

106 • The Palliative Approach ToolkitSelf-directed learning package:Advanced nurses quiz answersSection 11 The resident and/or family must provide the nurse with information concerning their wishes about end oflife care at the initial assessment and care planning interview after admission.• An advance care plan does not have to be completed in one sitting. The best outcomes may come from anynumber of conversations. Giving a resident the time to think about your questions is very important.• Advance care planning should be part of the routine processes for every resident soon after admission to aresidential care facility.• A nurse-led care conference is recommended to facilitate this process. We suggest that the residents GP beinvited to attend (or at least be made aware of any wishes or decisions regarding advance care planning).TrueFalse2 There is no way of recording treatment preferences for a resident who has advanced dementia and did notrecord their wishes on a legal document when they still had mental capacity.• The resident’s wishes can still be obtained from family members if known and recorded in the clinical recordas an important but not legally binding guide for members of the health care team to follow.• A good example Is the “good palliative care plan”.3 Regular reviews of advance care plans mean checking if there is a form in the clinical records from when theresident was admitted.• Reviewing does not simply mean checking if there is an advance care plan present in the notes. The actualdecisions a resident has made need to be reviewed with them on a regular basis.• As part of your holistic care review (every 3 months?) ask:- Are these still your wishes?- Has anything changed in your life since our last review?- Do any of these changes reflect on your documented wishes?- Are there any changes you would like to make to your advanced care plan?4 The “Understanding the Dying Process” brochure is appropriate to give to family members at a palliativecare case conference.• Often in times of stress, residents and family members may not remember all that is discussed. Suitableresources should be available in order to complement the information you provide them in the case conference.• However written information should not be used as a substitute for personal conversations.

107 • Self Directed Learning Package - Advanced Registered & Enrolled NurseTrueFalse5 It is appropriate to accept a careworker estimation of the severity of a resident’s dyspnoea if they cannotremember what rating score a resident provided them.• Because health professionals tend to under-report a patient’s breathlessness the resident should be encouragedto rate the severity themselves (if cognitively aware).6 Attitudes and beliefs of residents, family and health professionals can be barriers to effective pain management.• Attitudes and beliefs can cause reluctance to report pain or prescribe/administer appropriate analgesics.• Examples of faulty attitudes/beliefs include:-“People with dementia don’t feel pain”-“It’s normal to have some level of pain as you age”-“Opioids hasten death”.7 A resident with chronic pain that is moderate to severe intensity will look pale, perhaps be sweating and havechanges in their heart rate and/or blood pressure.• In palliative care, pain is usually chronic and the obvious signs such as pallor, sweating, or changes in bloodpressure may not be seen.8 A tingling, burning pain that runs around one side of the chest wall between two ribs is most likely to beneuropathic in origin.• Neuropathic pain often follows dermatome/nerve distribution paths.• It is described as burning, shooting, radiating, tingling, numbness, pins and needles or deep aching.9 It is up to the nurse to assess the condition of a resident’s oral health each day.• Careworkers are in an ideal position to check for problems related to oral health.• Encourage them to check and report to a nurse anything out of the ordinary at meal times, when providingmouth care, cleaning dentures etc.10 A resident with dementia exhibits fluctuating confusion and wakefulness. This is best attributed to thedementia itself.• Dementia has no diurnal effects and symptoms are progressive yet relatively stable over time.• Delirium however has short, diurnal fluctuations in symptoms; worse at night in the dark and on awakening.11 Alfred has not responded to environmental and nursing interventions for his delirium. You should questionthe GP’s order of a dose of diazepam to help manage Alfred’s hallucinations.• Benzodiazepines do not improve cognition but may help associated anxiety.• Benzodiazepines may in fact worsen delirium if not used in combination with an antipsychotic drug suchas haloperidol.

109 • Self Directed Learning Package - Advanced Registered & Enrolled NurseBibliography – SDLP - Nurse (Advanced)1Australian Health Ministers’ Advisory Council: Clinical, Technical and Ethical PrincipalCommittee (2010) A national framework for advance care directives – ConsultationDraft. Viewed 11 November 2010 http://www.hwlebsworth.com.au/acdframework/2Australian Pain Society (2005) Pain in Residential Aged Care Facilities: ManagementStrategies. Viewed 14 July 2009 http://www.apsoc.org.au/owner/files/9e2c2n.pdf3Brisbane South Palliative Care Collaborative, Queensland Health/ Griffith University(2010) Residential Aged Care End of Life Care Pathway (RAC EoLCP), Brisbane4Commonwealth of Australia (2006) Advance Care Planning Training Resource. Viewedonline 24 November 2009 http://agedcare.palliativecare.org.au/LinkClick.aspx?fileticket=09xRm6%2bkFVs%3d&tabid=1178&mid=17345Corner J and O’Driscoll M (1999) Development of a breathlessness assessment guidefor use in palliative care. Palliative Medicine 13: 375-3846Inouye SK (2003) The Confusion Assessment Method (CAM): Training Manual andCoding Guide. Yale University School of Medicine, New Haven7Inouye SK, Foreman MD, Mion LC, et.al. (2001) Nurses’ recognition of delirium and itssymptoms: Comparison of nurse and researcher ratings. Arch Intern Med. 161: 2467-738Inouye SK, Van Dyck CH, Alessi CA, et.al. (1990) Clarifying confusion: The ConfusionAssessment Method: A new method for detection of delirium. Ann Intern Med. 113:941-89International Association for the Study of Pain (2009) IASP Pain Terminology. Viewed12 September 2009 http://www.iasp-pain.org/AM/Template.cfm?Section=Pain_Defi...isplay.cfm&ContentID=1728#Pain10Kristjanson, LJ, Cousins, K, Smith, J, Lewin, G (2005) Evaluation of the BereavementRisk Index (BRI): A community hospice care protocol for bereavement support.International Journal of Palliative Nursing. 11(12): 610-61811Mitchell S L, Tetroe J and O’Connor A M (2001) A decision aid for long-term tubefeeding in cognitively impaired older persons. Journal of the American GeriatricsSociety, 49 (3) 313–31612Morley J E and Silver A J (1995) Nutritional Issues in Nursing Home Care. Annals ofInternal Medicine 123 (11) 850-85913New Zealand Guidelines Group (1998). Guidelines for the Support andManagement ofPeople with Dementia. New Zealand: Enigma Publishing.14Palliative Care Australia (2006) Facts about morphine and other opioid medicinesin palliative care. Viewed 12 June 2009 http://www.palliativecare.org.au/portals/46/resources/FactsAboutMorphine.pdf

110 • The Palliative Approach Toolkit15Palliative Care Council of South Australia Inc. (1996) Good Palliative Care Plan.16Registered Nurses Association of Ontario (2003) Screening for Delirium, Dementiaand Depression in Older Adults. Toronto, Canada: Registered Nurses Association ofOntario. Viewed 14 June 2009 http://www.rnao.org/bestpractices/PDF/BPG_DDD.pdf17SA Dental Service (2009) Oral Health Planning Guidelines. Viewed 7 August 2010http://www.sadental.sa.gov.au/Portals/57ad7180-c5e7-49f5-b282-c6475cdb7ee7/BOHRCProfessiona-Portfolio-10-2-11.pdf18Therapeutic Guidelines Ltd (2010) Therapeutic Guidelines: Palliative Care, Version 3.Melbourne19Victorian Government Department of Human Services (2006) Clinical PracticeGuidelines for the Management of Delirium in Older People. Viewed 14 July 2009http://www.health.vic.gov.au/acute-agedcare/delirium-cpg.pdf

111 • Self Directed Learning Package - Advanced Registered & Enrolled NurseSelf directed learning package 3Careworker (Introduction)

112 • The Palliative Approach Toolkit

113 • Self Directed Learning Package - CareworkerThe PalliativeApproach ToolkitThe Palliative Approach (PA) Toolkit is designed to assistresidential aged care facilities to implement a comprehensive,evidence-based palliative approach of care for residents.The PA Toolkit contains:Education resources• Three self-directed learning packages1. Nurse (Introduction)2. Nurse (Advanced)3. Careworker (Introduction)• Two educational DVDs1. “A palliative approach in residentialaged care: Suiting the needs”2. “All on the same page: Palliativecare case conferences in residentialaged care”• Five educational flipchartsThe flipcharts are for short sessional inserviceeducation targeting careworkersand are mapped to the clinical caredomains.Module 1: Integrating a palliativeapproachModule 1 focuses on policies, systems andresources to support a palliative approachin a residential aged care setting.Module 2: Key processesModule 2 focuses on three key processesessential in implementing a palliativeapproach:• Advance care planning• Palliative care case conferences• End of life care pathwayModule 3: Clinical careModule 3 focuses on the assessment andmanagement of five clinical care domains:• Pain• Dyspnoea• Nutrition and hydration• Oral care• DeliriumResource materialsThe PA Toolkit includes several importantreference publications:• “Guidelines for a Palliative Approachin Residential Aged Care – EnhancedVersion”• “Therapeutic Guidelines: Palliative Care,Version 3”• “Now What? Understanding Grief”brochure• “Understanding the Dying Process”brochure• “Invitation and family questionnaire -Palliative care case conference”For the purposes of this toolkit, nurse will refer to registered and enrolled nurseand careworker will refer to personal careworker, health careworker andassistant-in-nursing.

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115 • Self Directed Learning Package - CareworkerSDLP-3Self-directed learningpackage: CareworkerWelcome to this self-directed learning package (SDLP) aboutproviding a palliative approach to residents in residential agedcare facilities (RACFs).Aims of this learning packageAfter working through this package you will be able to:• describe what a palliative approach is, and identify when aresident is palliative• understand the process of advance care planning, and how itcan benefit the resident, their family and the aged care team• describe how you as a careworker can contribute to apalliative care case conference• describe why is it important to know a resident’s culturalbackground and preferences• identify common clinical problems in the palliative phase,report them to nursing staff, and provide relevant care withinyour scope of practice• understand the benefits of an end of life care pathway andthe role of the careworker during the final week/s of aresident’s life.What do I have to do?You will be asked at specific times to watch two DVDs:• “Suiting the needs” (produced by Palliative Care Australia)• “All on the same page” (developed specifically for this toolkit).These DVDs highlight important aspects of the information youwill be reading about in this package. Each runs for less than 15minutes. To complete this package you need access to a DVDplayer so make sure you have that before you commence.

116 • The Palliative Approach ToolkitWe will ask you to reflect on the case studies of Bob and Alfredand to take note of important points. Throughout the packageyou will see these symbols:Thinking PointThinking Points indicate that you should stop andthink about the information, questions or ideas beingpresented. We encourage you to write down yourthoughts but this is not compulsory.AssessmentAt the end of this package are a series of questions that willassist you to demonstrate your understanding of the care of aresident who requires a palliative approach. You are encouragedto talk with your supervisor or education facilitator if you areunsure about anything in this package.How long will this take?We anticipate it will take you 2 hours to complete the SDLP. Thisestimate includes viewing time for the two DVDs (approximately26 minutes).Key PointKey Points highlight information or an activity thatis critical to your learning in this package.‘See, say, do, write, review’The “see, say, do, write and review” model breaks downclinical care into five key actions. Youi will see theseprompts throughout the learning package:Key PointPlease note for the purposes of this toolkit, nursewill refer to registered and enrolled nurses andcareworker will refer to personal careworkers,health careworkers and assistants-in-nursing.OK… LETS GET STARTEDSee – Recognise and assessSay – Report your assessmentDo – Manage the symptomWrite – Document your actionsReview – Evaluate and reassess as necessary

117 • Self Directed Learning Package - CareworkerSECTION 1BobIn this first section we will help you answer these questions:• What is palliative care?• What is a palliative approach and when is a resident palliative?• What is advance care planning and how can it help a resident,their family and health care staff?• What can you do to identify, report and manage dyspnoea(shortness of breath)?Key PointsBefore reading any further, watch the DVD “Suitingthe needs”. We will refer back to scenes throughoutthis first section, so you may want to take somenotes of the DVD’s key messages.While watching the DVD you were introduced to Bob and hiswife June.Case study - BobBob is a 75 year-old retired house painter. Imagine that hewas admitted to your RACF just over 12 months ago when hisbreathing deteriorated and he could not cope at home evenwith home supports.Bob has emphysema (chronic obstructive airways disease)and on rare occasions requires oxygen. He has no cognitivememory deficits and is competent to make decisions abouthis care. Careworkers need to assist him with showering.He recently was admitted to hospital when his breathingbecame very difficult. This scared him and he worries that itwill happen again.His wife June has some arthritis but is still able to liveindependently at home. She visits Bob after lunch almostevery day. Bob has one son, William who visits everytwo weeks.

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119 • Self Directed Learning Package - CareworkerWhat ispalliative care?What is palliative care?The World Health Organisation defines palliative care as:An approach that improves the quality-of-life of individualsand their families facing the problems associated with lifethreateningillness, through the perception and relief of sufferingby means of early identification and impeccable assessment andtreatment of pain and other problems, physical, psychosocialand spiritual. 13Three forms of palliative care 4,5Key PointsWhen you think about a palliative approach forresidents in RACFs, it is important to distinguishbetween a palliative approach, specialist palliativecare and terminal care.A palliative approachA palliative approach aims to improve the quality-of-life forindividuals with a life-limiting illness and their families, byreducing their suffering through early identification, assessmentand treatment of pain, physical, cultural, psychological, socialand spiritual needs.Underlying the philosophy of a palliative approach is a positiveand open attitude towards death and dying.Key PointsA palliative approach is not restricted to the lastdays or weeks of life.

120 • The Palliative Approach ToolkitWhy is a palliative approach important?A palliative approach can:• reduce distress for residents and their families• reduce transfers to hospital because aged care staff developskills to manage the palliative care needs of residents• help to involve the resident and their family in decisionmaking about their care• encourage open and early discussion about death and dyingwhich helps advance care planning• provide opportunities for improved control of pain and othersymptoms• allow the resident to be cared for by staff that they know andhave developed a rapport with.Bob has chronic obstructive airways disease (COAD)/emphysema that is worsening. He has already been admitted tohospital once and has said he doesn’t want this to happen again.A palliative approach aims to reduce his suffering throughearly identification, assessment and treatment of pain, physical,cultural, psychological, social and spiritual needs.Bob needs review of his symptoms particularly his shortness ofbreath. He also has some psychological and social needs thatrequire discussion with his GP, the nursing staff and his wife.Thinking PointSo it seems that a palliative approach is appropriatefor Bob. Would any of your current residents benefitfrom a palliative approach?Thinking PointIn the DVD, Bob’s careworker, Kerrie, mentions anumber of these important benefits. Can you relatethese points to the care of residents in your ownfacility?• When has open and early discussion on death anddying facilitated a good death for a resident?• Has a dying resident been transferred to hospitalunnecessarily?• How did this transfer affect the resident, family andstaff?When does a resident need a palliative approach?Watching the DVD, you would have heard that a palliativeapproach is not limited to the last weeks or days of life.It is a philosophy of care that may be appropriate many monthsbefore a resident actually dies and aims to improve the qualityof-lifefor people with an eventually fatal condition and theirfamilies.Thinking PointDo you agree that Bob needs a palliative approachto his care? He has been in the facility for over 12months. Why do you think it is only now beingdiscussed?Specialist palliative careIn the DVD, Peter, the GP suggested getting a specialist palliativecare team to help plan for and treat Bob’s severe breathlessness.A small number of residents may experience severe or complexproblems as their condition advances. These may be physicalsymptoms or complex ethical dilemmas, family issues orpsychological distress.Specialist palliative care teams do not usually take over the careof residents but instead can provide advice on complex issuesand support to GPs and the aged care team.Terminal careWhereas palliative care may take place over many months,terminal care is the care focused on the final days orweeks of life.This form of palliative care is appropriate when the resident isin the final days or weeks of life and care decisions may need tobe reviewed more frequently. Goals are more sharply focusedon the resident’s physical, emotional and spiritual comfort andsupport for the family, including bereavement care.Identifying when a resident is moving into the terminal phase isnot easy because there are few clear indicators to identify whena person should be considered for end of life care. (You will readabout this in more detail later in this package).

121 • Self Directed Learning Package - CareworkerAdvance careplanningKey PointEveryone should have the opportunity to expresstheir wishes about the treatment and care that theyreceive.Advances in medical technology have allowed people to survivelonger despite many chronic illnesses. It is good news that manyof us will live to a very old age, but people often survive withlots of problems. We now have the technology to keep peoplealive artificially, where in the past, they may have died naturally. 7Thinking PointThe tough question is just how much invasive oragressive medical attention is a good thing. The bestanswer is that it is up to everyone as individuals todecide for themselves. Have you thought about:• What constitutes quality-of-life for you?• What types of invasive medical procedures do youconsider to be undesirable?• If you had multiple physical problems, at whatpoint, would you want the doctors to stop trying toprolong your life?• What are your values and beliefs (religious, spiritualor otherwise)?• When your time eventually comes, what wouldconstitute a ‘good death’ for you? 7Most people never speak about these issues. When peopleare critically ill, they are usually unable to participate in theseimportant decisions. 7

122 • The Palliative Approach ToolkitPlanning aheadThinking PointWhen do you think discussions with residents andtheir family members about advance care planningshould be conducted? Immediately after admission?After several months? When a resident becomesterminally ill?Key PointAdvance care planning should be routine practicefor every resident soon after admission to aresidential care facility.It is never too early to consider, and write down, thoughts andwishes regarding end of life care. In fact, it is preferable toconsider these issues clearly and calmly when the matter is noturgent or critical.Most residential aged care facilities provide residents and familywith information about advance care planning on admission. Adiscussion between the resident (if able), family, nursing andmedical staff will often take place about this time. The outcomesof this discussion are recorded in the resident’s file.Key PointAdvance care planning should be seen as anongoing process rather than a single event.Writing it downIn the DVD, Bob wanted to make sure that everyone knewthat he did not want to be ‘kept alive’ with a ventilator if hisbreathing condition worsened again. We saw Bob talking withhis GP, nurse, wife and careworker about his wishes. He was keento ‘…get it down in writing’.Key PointHaving a written advance care plan or directive canimprove end of life care and reduce unwanted andunneeded medical treatments and hospitalisations.Advance directives are legal documents that record the resident’swishes about their care if they are unable to voice these wishesthemselves. They can also appoint a substitute decision maker,usually called a guardian or medical power of attorney.Key PointEvery Australian State and Territory has differentlegislation, guidelines and documents for advancecare planning, and where they exist, advancedirectives. The CareSearch website is a good placeto start to find out more: www.caresearch.com.auTable 1 displays an example of part of an advance healthdirective.Be mindful that the resident’s end of life care wishes need tobe revisited over time. Residents and families may change theirminds, or become clearer about their wishes concerning end oflife options. Perhaps, like Bob, they have a distressing experiencewhere they are transferred to hospital and are anxious that thisnot happen again.

123 • Self Directed Learning Package - CareworkerTable 1Example of an advance health directive form 9The directions you give in this section apply only if, in the opinion of your treating medical practitioner:- you have a terminal, incurable, or irreversible illness or condition,- or you are in a persistent vegetative state,- or you are permanently unconscious,- or your are so seriously ill or injured that you are unlikely to recover to the extent that you can survivewithout the continued use of life-sustaining measures.I request that:everyone responsible for my care initiate only those measures that are considered necessary tomaintain my comfort and dignity, with particular emphasis on the relief of pain.Initial here:any treatment that might obstruct my natural dying either not be initiated or be stopped.Initial here:unless required for my dignity and comfort as part of my palliative care, no surgical operation is to beperformed on me.If I am in the terminal phase of an incurable illness:I do not want cardiopulmonary resuscitation.I do want cardiopulmonary resuscitation.Initial here:Initial here:I do not want assisted ventilation.I do want assisted ventilation.Initial here:Initial here:I do not want artificial hydration.I do want artificial hydration.Initial here:Initial here:I do not want artificial nutrition.I do want artificial nutrition.Initial here:Initial here:I do not want antibiotics.I do want antibiotics.Initial here:Initial here:

124 • The Palliative Approach ToolkitDoes advance care planning have to be alegal process?It is not compulsory to complete a legal form. Not all residentsare willing (or able) to complete a legal document such as anadvance directive.The Good Palliative Care Plan, developed in South Australia isan alternative option. It can be used in any state or territoryand while not legally binding provides opportunity fordocumenting the outcomes of a discussion about the resident’scurrent condition and goals of care. Table 2 provides a segmentof this document.Table 2Excerpt from the Good Palliative Care Plan 8Circle one of the options:We have agreed that in the event of further deterioration in thepatient’s condition:1. Full cardiopulmonary resuscitation with total body support asrequired will be undertaken.2. Intensive medical support will be undertaken, butcardiopulmonary resuscitation will not be initiated, and nolong-term support measures, including ventilation or dialysis,will be undertaken.3. The emphasis of management will be on Good PalliativeCare, highlighting the relief of symptoms and discomforts.No artificial measures designed to supplant or support bodilyfunction will be undertaken.4. Other. Please specify:What if a resident is no longer able to expresstheir wishes?Thinking Point• Bob was able to make his own decisions and putthese in writing. Unfortunately, not everyone wantsto do this or is able to.• If Bob had advanced dementia and could notexpress his wishes about future care, what shouldhappen?• Should Bob be sent to hospital even if his familysay it was not what he wanted?Key PointIf a resident is not competent to make decisionsfor themselves, they cannot complete an advancehealth directive or legally appoint someone toadvocate on their behalf.This does not mean that they cannot be involved indiscussions about their advance care planning.It is also worthwhile considering the family’s viewson what the resident would have wished.What is my role as a careworker?Residents and family members often become close tocareworkers and may mention issues related to advance careplanning with you. Sometimes what seems like a ‘throw away’comment e.g. ‘I wouldn’t want to live like that’ may be importantto follow up.Ask the resident and/or family member if they would like to talkto a nurse about their concerns, and report back to the nurse sos/he can arrange a meeting. Be alert for any ongoing concerns aresident may raise.Thinking PointHas a resident or family member ever talked to you aboutthe resident’s end of life care wishes? How did you handlethis? Did you report this information to a nurse? Is thereanything you would do differently next time?

125 • Self Directed Learning Package - CareworkerDyspnoeaDyspnoea is an awareness of uncomfortable breathing.It can also be called breathlessness or shortness of breath.Thinking PointHave you ever had the experience of not being ableto breathe well? Perhaps after a strenuous exercisesession? Can you imagine living with that sensationconstantly? If you have, what thoughts or feelingscome to mind?SeeRecognise and assessKey PointDyspnoea is not so much about how fast or slow,deep or shallow someone is breathing. Rather itis a subjective feeling that everyone experiencesdifferently.The Australian author Tim Winton wrote in his 2008 novel‘Breath’: 12‘It’s funny, but you never really think much about breathing,until it’s all you ever think about.’Dyspnoea• is common but under-recognised• impairs activities of daily living, limits mobility, increasesanxiety, fear and social isolation• is often associated by residents and family withimpending death• triggers panic, and panic exacerbates dyspnoea, so thepattern becomes cyclical• may be equally or even more distressing for the family.So… what can you do to help a resident with dyspnoea?Because health professionals often under-report dyspnoea theresident should be encouraged to rate the severity themselves(if able to do so).Verbal Rating ScaleAsk: ‘On a scale of zero to 10, with zero meaning nobreathlessness and 10 meaning the worst breathlessnesspossible, how much breathlessness do you have right now?’Please noteWhile dyspnoea is the term health professionals use, it is betterto refer to it as breathlessness when talking to residents orfamily members.For those residents who cannot communicate, take time toobserve their breathing rate and any resulting impact on theirmood, sleep or function.

126 • The Palliative Approach ToolkitSayReport your assessmentAs a careworker you play a critical role in reportingresident’s symptoms to the nursing staff.Thinking PointConsider the following scenario: You are walking withBob to the dining room and he is breathing quicklyand having trouble catching his breath, particularlywhen he speaks. He says he’s been feeling verybreathless for a few days.How would you report this to the nurse?Try and provide as much information as possible when reportingto the nurse. This will allow them to decide how urgently theyneed to review the resident.Thinking PointWhich of the following would be most effective?Careworker to nurse:‘Bob appears to be short of breath. He cannot walk tothe dining room without having to stop twice to catchhis breath. He says it has been a problem for a fewdays now’.Is much better than:‘Bob cant breath properly, please come and reviewhim’.Key PointSometimes it is an emergencyCall a nurse immediately if the resident hasdyspnoea and:• it is rated as (or appears) severe, or• it prevents the resident from talking, or• the resident also has chest pain, or• their skin is pale or cyanosed (i.e. blue tinge tothe fingers, lips or tongue).DoManage the symptomThinking PointConsider the following scenario:Bob becomes breathless whenever he has a shower.Usually he has to sit and rest for an hour or moreafterwards before he feels well enough to carry onwith his daily activities.As a careworker what can you do to help Bob managehis breathlessness from showering?Key PointResidents with dyspnoea benefit from havinga preventative plan of care. That is, we usemanagement strategies to prevent the onset, orreduce the impact of, the anxiety and distress ofdyspnoea.Here are some examples:• Try not to rush or hurry Bob and allow rest periods duringactivities. This will decrease his need for oxygen and reducehis anxiety levels.• To prevent feelings of claustrophobia in the bathroom, leavethe exhaust fan switched on and make sure the shower wateris deflected away from Bob’s face.• When Bob returns to his room, sit him upright in a chair,perhaps leaning with his arms over a table or over-way table.This will open up his chest and lung space to allow in more air.• To create a sensation of moving air, open a window or use afan to circulate air.

127 • Self Directed Learning Package - CareworkerWhat will the nurse do?Bob might be administered a small dose of opioid medication(e.g. morphine) at least 30 minutes before showering. Let thenurse know when you will be showering Bob so they can givethe medication at the correct time.Please noteMorphine can be effective for dyspnoea as well as pain.WriteDocument your actionsMany residential aged care facilities expect careworkersto document information on assessment charts and inthe clinical record.Thinking PointDid you notice that oxygen therapy is not mentionedin the list of management strategies? Does thissurprise you?Avoid general statementsPOOR COMMUNICATIONEvaluation of interventions ‘with effect’ or‘effective’.GOOD COMMUNICATION‘Resident states their dyspnoea hasreduced to 2/10 score (was 5/10)’.Key PointFew residents with dyspnoea actually benefit fromoxygen therapy.Starting oxygen therapy, or changing flow rates,may be dangerous for some residents.The commencement of oxygen should only beundertaken under the direction of a doctor.Always provide care as directed in the resident’scare plan. If unsure about any aspect, speak to thenurse.

128 • The Palliative Approach ToolkitReviewEvaluate and reassess as necessaryThinking PointYou identified that Bob is breathless. You openedhis window, propped him up with pillows, and set upa bed-side fan. Great job! Can you tick this off yourlist? Not quite yet. There is an important question toanswer: Did your strategies work?You can check the effectiveness of your management strategiesby asking the resident to rate the severity of their dyspnoeaagain (using a rating scale), observing their breathing rate, orasking if their mood, sleep or function has improved.Key PointIt is very important that you then pass thisinformation on to a nurse (and document them ifthis is part of your role as a careworker).SUCCESS!You have completed Section 1 of the learning package.You may decide to pause now and answer the firstsix questions of the quiz at the back of this learningpackage.

129 • Self Directed Learning Package - CareworkerSECTION 2AlfredIn this section we will help you answer these questions:• What can you do as a careworker to contribute to the successof a palliative care case conference?• Why is it important to know a resident’s cultural backgroundand preferences?• What can you do to identify, report and manage four clinicalissues (pain, nutrition and hydration, oral care, and delirium)?• What are the benefits of an end of life care pathway?What is the role of a careworker during the final days/weeksof a resident’s life?Key PointBefore reading any further, watch the DVD “All onthe same page”. It is approximately 14 minutes longand you may want to take some notes of key points.While watching the DVD you were introduced to Alfred and hisdaughter Sarah.Case study - AlfredAlfred is 82 years old and a retired school teacher. Alfred hastwo children: Andrew who lives overseas and Sarah who livesclose by and visits twice weekly.Alfred’s wife Alice was admitted to hospital after a severestroke and remained there, fed through a gastrostomy tubeuntil she died three weeks later of pneumonia.After Alice died, Alfred remained at home for nine monthswith increasing support from home care services. Numerousfalls and increasing difficulty with activities of daily living ledto admission 18 months ago to a residential aged care facility.Alfred was a heavy smoker until aged 65 but has notsmoked since.He has osteoporosis, osteoarthritis and fractured his hip threeyears ago.He is experiencing short term memory loss but not enoughto lose his ability to make decisions. Alfred also has ChronicObstructive Airways disease (emphysema) and is unable towalk 20 metres before needing to rest. He has been admittedto hospital three times in the last six months for infectiveexacerbations of this condition requiring steroids andantibiotics. Alfred has not returned to his previous functionallevel after each episode.

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131 • Self Directed Learning Package - CareworkerPalliative care caseconferencesThinking PointIn the DVD “All on the same page”, Alfredparticipated in a palliative care case conference.• Why has a palliative care case conference beenarranged for Alfred?• What are the main reasons for having a palliativecare case conference?• When is the most appropriate time during Alfred’sstay to have a palliative care case conference?What is a palliative care case conference?A palliative care case conference is a meeting held between aresident (and/or their family) and their care providers.The aims are to:• identify clear goals of care for the resident including a reviewof any advance care plans and• provide a safe environment where issues and questions aboutend of life care can be raised and appropriate strategiesagreed upon for future care.When should a palliative care case conferencebe held?There is no right or wrong time for a palliative care caseconference. However, we recommend using the followingmarkers to help decide:• A positive response to the question: “Would you be surprisedif the resident died within the next six months?”.• If there has been a significant functional or medical decline.• If problems are perceived concerning goals of care aroundfutile treatment (perhaps after an acute event).• If the resident is transferred or admitted to the RACFspecifically for comfort care or palliative care.

132 • The Palliative Approach ToolkitThinking PointDo you think Alfred needed a palliative care caseconference?Let’s look at the facts. He was admitted to hospitalthree times in the last six months for worsening of hisairways disease and has not returned to his previouslevel of function after each episode. After a discussionabout the goals of his care, the aged care teamdecides to organise a palliative care case conference.Key pointAs a careworker, you will not be expected to decideif a resident has reached the palliative care phase.However your observations will help the nurses andGP make this decision.What is a palliative care link nurse?A palliative care link nurse (or champion) agrees to takeon a special role, promoting and facilitating a palliativeapproach within the RACF. A link nurse may:- promote and model the palliative approach- coordinate the implementation of the PA Toolkit- act as the ‘link’ person for external providers (e.g. GPs,specialist palliative care services, allied health, clergy)- assist with auditing or quality improvement processes- conduct in-service training for staff.Who organises a palliative care caseconference and who should attend?Alfred’s daughter Sarah, Alfred’s GP, and a nurse and careworkerfrom the facility attended Alfred’s palliative care caseconference. The nurse organised and facilitated the conference.Attendees may vary depending on what is being discussedand who is available. However the following people should beconsidered:• resident (if capable)• legal decision maker/medical power of attorney• family members• residential facility staff including a nurse and careworker• allied health e.g. speech pathologist, occupational therapist,physiotherapist, social worker, dietician• clergy or pastoral care worker• specialist palliative care nurse or GP.A palliative care case conference may take a few weeks toorganise. It is usually organised by a nurse from the residentialfacility, often a palliative care link nurse.

133 • Self Directed Learning Package - CareworkerWhat is the careworker’s role in a palliativecare case conference?In the DVD “All on the same page” a careworker attendedAlfred’s palliative care case conference. She was able to describeimportant aspects of Alfred’s day-to-day care needs.Key PointCareworkers often notice important changes in aresident’s mood, ability to function, swallow, walk,breathe etc. Residents may say things to you thatare important for other care providers to know.As a careworker, you may be invited to participate in a palliativecare case conference. During the conference you may be askedto comment on the resident’s physical and mental functioningover the last few months. You may also be asked to comment onthe careworker’s role in the future care plan.If you are not asked to attend, you may be asked to write downon a form any issues you feel should be talked about. Yourinput is essential in providing a comprehensive overview of theresident’s care needs.Thinking PointThink about a resident who’s health is declining.What information would you be able to provide if apalliative care case conference was scheduled?

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135 • Self Directed Learning Package - CareworkerCultural considerationsThinking PointWhat if, instead of being of Australian descent, Alfredwas from another country and spoke very little or noEnglish?How might this affect his care?Australia has a diverse, multicultural population. Over 22% ofAustralia’s population was born overseas, representing over200 different countries. 1 Residents and family members fromculturally and linguistically diverse (CALD) populations may haveparticular needs related to end of life care.Key PointHaving said this, do not make assumptions aboutcultural needs based on a resident’s language,religion or country of origin. All residents from aCALD background require careful assessment.Here’s some useful tips for getting it right:• Do not hesitate to ask about relevant cultural aspects ofcaring for a resident• Be aware of customs that show respect• Respect that people have different reactions towards deathe.g. for some Indigenous Australians speaking the name of adeceased person can cause considerable stress• Communicate in ways that are appropriatee.g. avoid the use of jargon and translate information intoterms the family and resident can understand• Just because someone can understand spoken English doesnot mean they can automatically read it as well.

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137 • Self Directed Learning Package - CareworkerPainKey PointPain is a subjective experience, occurring when andwhere the resident says it does.The way that residents experience and make senseof pain is strongly influenced by their previousexperiences of pain, culture, spiritual beliefs, socialrelationships and other physical symptoms theymay be experiencing.SeeRecognise and assessAs a careworker, you have a very important role inidentifying resident pain.Thinking PointAlfred has osteoporosis, osteoarthritis and fracturedhis hip three years ago.He is often heard asking careworkers and nurses ifit is time for his next dose of pain medication. Heasks for assistance with most activities of daily livingbecause the pain is “terrible”.• What is the best way to assess Alfred’s pain?• How do you normally identify if a resident has pain?• Do you use an assessment tool? Do you write downwhat a resident says?

138 • The Palliative Approach ToolkitIf the resident can communicateAsk the resident if they have any pain.Tips:• Older people may deny that they are experiencing ‘pain’. Tryusing other terms like ‘ache’, ‘soreness’ or ‘discomfort’.• Most pain in older people is related to activity. Ask about painwhen they are active e.g. moving, transferring, being turned inbed, not when they are at rest.• Allow enough time for the resident to think about thequestion and reply.• Ask more than one question: ‘does it hurt anywhere?’, ‘do youhave any aching or soreness?’, or ’do you have any pain ordiscomfort’?Severity of pain can be assessed by asking the resident to ratetheir pain on a zero to ten scale where zero is no pain and ten isthe worst imaginable. 2Key PointEveryone has their own pain threshold and it isunhelpful and unfair to compare the scores ofdifferent residents. Instead, compare a resident’sindividual scores across time.If the resident cannot communicate or has acognitive deficitOne of the most difficult aspects of caring for the resident whocannot communicate or is cognitively impaired (e.g. advanceddementia) is identifying whether they are experiencing pain.Thinking PointWhat would happen if Alfred was unable tocommunicate his pain?How would you know if he was experiencing pain?How would you know if a treatment to manage thepain had been effective?Do you use a pain assessment tool for residents whocannot communicate?Key PointThe most effective method to assess pain inresidents who cannot communicate is to observebehaviours and facial expressions.Thinking PointThink of a resident you have cared for with advanceddementia or a communication deficit whom youthought might be experiencing pain. Have youobserved any of the following?• whimpering, groaning or crying• looking tense, frowning, grimacing, lookingfrightened• increased confusion, refusing to eat, alteration inusual behaviour patterns• perspiring, flushed or pale skin, abnormaltemperature, pulse or blood pressure• skin tears, pressure areas, arthritis, contractures,previous injuries.These pain behaviours and physical cues aremeasured in the Abbey Pain Scale. We recommendthe use of this scale for people who are unable tocommunicate.

139 • Self Directed Learning Package - CareworkerSayKey PointSometimes it is an emergencyIf a resident rates their pain as severe, or theyreport chest pains and difficulty breathing: treat itas an emergency and call a nurse immediately.Report your assessmentTry and provide as much information as possible whenreporting to the nurse. This will allow them to decidehow urgently they need to review the resident.Thinking PointWhich of the following do you think will get the bestresponse?Careworker to nurse:‘Alfred appears to have pain. He grimaces when wetransfer him from sit to stand. This is not his normalbehaviour. It has happened three times today so far.He says it is a new pain’.Is much better than:‘Alfred has got pain. You need to see him to sort it out’.DoManage the problemNon-pharmacological therapiesCareworkers can assist in managing a resident’s pain with somesimple yet effective activities. Therapies such as massage canprovide relief for residents.Key PointMake sure you consider the following when you areproviding care to a resident:• Is the resident lying or sitting in a comfortableposition?• Do you take the time to position lifters and otherequipment to prevent pain?• Does the resident have to twist or stretchtheir joints or muscles abnormally when beingtransferred?• Are there any other therapies or strategies(apart from medication) that might help theresident’s pain?Always provide care as directed in the resident’scare plan. If unsure about any aspect, speak tothe nurse.Pharmacological therapiesMedications have an important role in managing many typesof pain.Key PointConsider waiting at least 30 minutes after a residenthas been given pain (analgesic) medication beforeproviding any care that is known to cause pain ordiscomfort.

140 • The Palliative Approach ToolkitMyths about opioidsOpioids (e.g. morphine, oxycodone or fentanyl) area type of strong analgesic.Sometimes residents, family members and even agedcare staff may have concerns about these medications.It is important to know that, when used correctly,opioid medicines:Do not lead to addiction or dependenceOpioid medicines are not addictive when used for pain.Addiction only occurs when people have no pain andthey abuse opioid medicines.Do not hasten deathMorphine and other opioid medicines are for improvinglife – not hastening death. Some people fear that beingprescribed opioid medicines means that they’re closer tothe end. However, relieving pain changes the quality-oflife– not its length.Do not cause terrible side-effectsAll medicines can have side effects. The side effects ofopioid medicines (constipation, drowsiness, nausea, drymouth) are usually manageable.WriteDocument your actionsMany residential aged care facilities expect careworkersto document information on assessment charts and inthe clinical record.Avoid general statementsPOOR COMMUNICATIONGOOD COMMUNICATIONEvaluation of interventions for pain ‘with ‘Resident states pain has reduced to 2/10effect’ or ‘effective’.score (was 5/10)’.ReviewEvaluate and reassess as necessaryThinking PointYou identified that Alfred has pain. You helped himstraighten up in bed, massaged the painful area (asdirected in the care plan) and asked the nurse aboutsome analgesic medication. Great job! Can you tickthis off your list? Not quite yet. There is an importantquestion to answer: Did your strategies work?You can check the effectiveness of your management strategiesby asking the resident to rate the severity of their pain again(using a rating scale), observing their behaviours or facialexpression, or asking if their mood, sleep or function hasimproved.Key PointOnce you review and reassess a resident it is veryimportant that you pass this information on to anurse (and document your assessment if this is partof your role as a careworker).

141 • Self Directed Learning Package - CareworkerNutrition andhydrationOne of the big worries that Alfred’s daughter, Sarah, had at thepalliative care case conference was that Alfred might starve todeath if he is unable to eat and drink. Remember that Sarah’smother was fed through a gastrostomy tube after she hada stroke. This continued for three weeks before she died ofpneumonia.SeeRecognise and assessAlfred is drowsy and needs prompting to accept a drink from acup and straw.He only eats a few mouthfuls of food and sometimes coughswhen he swallows. Alfred is dying and this is causing his eatingand drinking problems. This is often a difficult and emotionaltime for families and can sometimes be hard for staff to manage.Key PointAt the end of life the body is beginning to shutdown because of the dying process, not because ofthe absence of food and fluids.Family members often find it difficult to distinguishbetween ‘not eating as part of the dying process’and ‘not eating as bringing about the dyingprocess’.Helping families understandThe PA toolkit contains a brochure “Understanding the DyingProcess” which can be given to family members when theresident is in the palliative or terminal phase.Table 3 provides a brief segment from the “Understandingthe Dying Process” brochure. This brochure is included inthe PA Toolkit and we recommend you familiarise yourselfwith the document.Table 3Segment from “Understanding the Dying Process” brochureMost people lose their appetite in the last few weeks of life.This is a very natural and normal part of the dying processbecause metabolism is slowing down and the body requiresless nutrition.At this time your instincts may be to try and feed the personin order to keep up their strength. The giving of food is oftensymbolic of loving and nurturing and to deprive someone ofthis may feel like neglect. However, as the person becomesincreasingly weak and drowsy, swallowing and digesting food andfluids often becomes harder and can place strain upon the body.Whilst the person may have a reduced oral intake, it is importantto maintain good oral care. Regular moistening of the mouthand lips will add to the person’s comfort.SayReport your assessmentAs a careworker you play a critical role in reportingresident’s symptoms to the nurse.Thinking PointConsider the following scenario:Alfred cannot feed himself now. When you help tofeed him, you notice he falls asleep whilst chewingand sometimes coughs.How would you report this to the nurse?

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143 • Self Directed Learning Package - CareworkerTry and provide as much information as possible when reportingto the nurse. This will allow them to decide how urgently theyneed to review the resident.Thinking pointWhich of the following do you think will get the bestresponse?Careworker to nurse:‘Alfred appears to be having trouble drinking andeating. He has been getting worse over the last fewdays and it seems to be related to him becomingdrowsier’.Is better than:‘Alfred is refusing to eat or drink’.DoManage the problemKey PointDiligent hand feeding and offering drinks frequentlyis important for all residents. 4If Alfred becomes unable to swallow, staff should cease offeringfood and drink, instead focusing on excellent mouth care.When a resident cannot swallow food or fluids by themselves, itis possible to provide these by artificial means such as through atube (PEG tube) or SC (subcutaneous cannula) ‘drip’.Decision makingThere is no simple answer to whether these interventions are rightor wrong. The benefits of artificial nutrition or hydration need tooutweigh the potential burden and side effects for the resident.Residents and family members cannot make the best decisionsif they do not have enough information. Conversations with thenurse and doctor about the positive and negative aspects ofartificially providing food or fluids are very important at this stage.Artificial nutritionKey PointFor residents requiring a palliative approach,there is no evidence that tube feeding prolongslife, improves comfort or quality-of-life, preventsaspiration pneumonia, leads to better nourishmentor decreases the risk of pressure sores. 6Artificial hydrationThinking PointAlfred is unconscious and you would not be surprisedif he dies in the next two to three days. A fellowcareworker is upset that Alfred cannot drink. He says‘How bad must it be for Alfred being so dehydrated,he should have a saline drip’.Do you agree with his comments?

144 • The Palliative Approach ToolkitArtificial hydration is usually administered via a small cannulaplaced under the skin (a subcutaneous SC drip). Althoughartificial hydration can be useful to treat reversible causes ofdehydration, it is not normally used when a resident is expectedto die within 48 - 72 hours.Thinking PointThink about how you feel if you forget to have a drinkduring your eight hour shift at work. Do you feel alittle drowsy, have a headache, dry mouth or dizzinessif you stand up quickly? Perhaps you just feel thirsty.Having a drink makes you feel better because itmoistens your mouth.Similarly, moistening the mouth of a resident who can no longerswallow fluids will keep them comfortable as much as or moreso than a ‘drip’.Key PointMedication side effects, oxygen therapy andmouth breathing can cause a dry mouth. Artificialhydration does not usually relieve the feeling ofdry mouth and can actually worsen respiratorysecretions, incontinence, vomiting, swelling(oedema) or breathing difficulties.WriteDocument your actionsMany residential aged care facilities expect careworkersto document information on assessment charts and in theclinical record. If this is part of your role, try and avoid generalstatements. Be as specific as possible.Avoid general statementsPOOR COMMUNICATIONGOOD COMMUNICATIONEvaluation of artificial hydration ‘with ‘Resident denies thirst or discomfort,effect’ or ‘effective’.mouth moist and intact, urinary outputstill moderate’.ReviewEvaluate and reassess as necessaryJust because artificial nutrition or hydration has been started doesnot mean that it should be continued until the resident dies.Artificial hydration needs to be reviewed regularly by the nurseand doctor to ensure it is still the most appropriate interventionfor the resident. In the terminal phase, assessment shouldoccur daily.You will learn more about the importance of oral care in a latersection of this learning package.

145 • Self Directed Learning Package - CareworkerOral careAs a careworker you play an integral role in maintaining goodoral hygiene for the resident and managing common oral healthproblems.SeeRecognise and assessThinking PointAfter you have assisted Alfred with a bed bath youask him if he would like assistance cleaning his teeth.• What should you look for when assessing aresident’s oral health?• How do you normally assist a resident withmaintaining their oral hygiene?Key PointCheck the resident’s oral cavity regularly forproblems every time you assist with feeding,providing fluids or mouth care. If you do not knowhow to do this, ask a nurse who will help you.You should look for any of the following:• bad breath• sore mouth and gums• lip blisters/sores/cracks• difficulty eating• broken teeth• bleeding gums• reports of pain inmouth/lips• tongue coated orabnormal colour• excessive food leftin mouth• mouth ulcer• refusing oral care• swelling of face/mouth• dentures broken/lost. 10Dry mouth (xerostomia) is the most common oral problem atthe end of life. 10

146 • The Palliative Approach ToolkitSayReport your assessmentReport to the nurse if you see any of the problems listedpreviously.Residents get the best outcomes when you provide clearinformation about the resident.Thinking PointWhich of the following do you think will get the bestresponse?Careworker to nurse:‘Alfred appears to have a very dry mouth. Swallowinganything more than water is difficult. His tongue isdry and has white spots and there are some cracksin the corners of his lips. He says it got much worsewhen the strong pain medications began’.Is much better than:‘Alfred has problems with his mouth. You better takea look’.DoManage the problemThe best clinical outcomes will be achieved if care plans aredeveloped after careful assessment of the resident’s oral cavity.Thinking PointAlfred’s medications cause a dry mouth, heoccasionally uses oxygen and often sleeps with hismouth open. He has a ‘sore’ spot on his gum and histongue is coated. What could you do to help Alfredwith his dry mouth?Dry mouth (xerostomia)• moisten oral cavity with frequent rinsing and sipping of water• apply water-based moisturiser to lips• discourage strong cordials, juices or sugary drinks• reduce caffeine intake• stimulate saliva with tooth friendly lollies• encourage resident to drink water after meals, medicationsand other drinks and snacks• use saliva substitutes such as a water spray or an oral balancegel or liquid. 10Pain or ulceration• help the resident to rinse or swab their mouth with warmsaline three to four times a day until resolved• check the fitment of dentures• avoid spicy or acidic foods or food with sharp edges• offer cold, soft food• local or systemic analgesics may be required• medical review if not resolved within seven days. 10Coated tongue, mucosa or teeth• remove debris with a soft toothbrush or mouth swab• help the resident to rinse or swab their mouth with warmsaline three to four times a day until resolved• brush tongue gently with soft toothbrush. 10

147 • Self Directed Learning Package - CareworkerOral care in the final days of lifeIn the final scenes of the “All on the same page” DVD, Alfred hasonly hours or days left to live. He cannot swallow food or fluids,is very drowsy, and breathes through his mouth. His tongue andlips are dry.Thinking pointThink about when you have a dry mouth. When youmoisten it with water, how long does it take untilthe dryness returns? Not very long? Perhaps fiveminutes?Imagine you are Alfred who relies on you to providethis comfort measure for him.As a resident approaches death they lose the ability to feedthemselves or have a drink. Eventually swallowing becomesdifficult and unsafe. Functionally they cannot clean their teethor oral cavity by themselves. Often this is when a ‘mouth care’trolley or tray is seen in the resident’s room.Key PointEvery time you attend to a resident:Apply dry mouth products: e.g. water spray, oral balance gel orliquid via mouth swabs.Apply water based lip moisturisers: Do not use petroleum basedproducts (e.g. vaseline) as they canincrease the risk of inflammationand aspiration pneumonia; alsocontraindicated during oxygentherapy. 10Key PointSome preparations may damage oral tissues orincrease the risk of infection.Do not use mouthwashes and swabs containing:• lemon and glycerine• sodium bicarbonate (high strength)• preparations containing alcohol (Listerinemouthwash) or hydrogen peroxide• pineapple or other acidic fruit juices. 10

148 • The Palliative Approach ToolkitWriteDocument your actionsMany residential aged care facilities expect careworkersto document information on assessment charts and in theclinical record. If this is part of your role, try and avoid generalstatements. Be as specific as possible.Avoid general statementsPOOR COMMUNICATIONGOOD COMMUNICATIONEvaluation of interventions ‘with effect’ or ‘Resident commenced on treatment for‘effective’.mouth ulcers. Sore spot on inside ofmouth resolved’.ReviewEvaluate and reassess as necessaryThinking PointYou identified that Alfred cannot swallow anymoreand you reported this to the nurse. When you enterhis room, you always swab his mouth and apply lipbalm. Great job! Can you tick this off your list? Notquite yet.There is an important question to answer: Did yourstrategies work?You can check the effectiveness of your management strategiesby checking Alfred’s mouth (as detailed in the SEE section prior).Key PointOnce you review and reassess a resident it is veryimportant that you pass this information on to anurse (and document your assessment if this is partof your role as a careworker).

149 • Self Directed Learning Package - CareworkerDeliriumDelirium in older people is often overlooked and misdiagnosed,especially at the end of life. It can be distressing not only for theresident but for family and health workers.SeeRecognise and assessThinking PointWhen you started your shift Alfred was his usualself, quite alert with only minor memory impairment.Towards the end of your shift you notice Alfred hasbecome very drowsy. He is mumbling nonsense about“catching chickens” and keeps trying to get out ofbed. He cannot tell you where he is and does notrecognise his daughter when she comes in to visit.Three days ago he was diagnosed with a urinary tractinfection.• Which of the information above indicates thatAlfred may be suffering a delirium?• What might have caused Alfred to becomeconfused?Key PointDelirium is characterised by disorganised thinkingand behaviour, and reduced ability to focus,sustain or shift attention from one thing to another.Hallucinations or delusions can also occur (but notalways). 11The disturbance develops over a short period oftime and generally fluctuates during the course ofthe day. Delirium usually only lasts for a few daysbut may persist for weeks or even months. Deliriumcan be caused by a combination of factors includingdehydration, medication side-effects, uncontrolledpain and infections. 11

150 • The Palliative Approach ToolkitSayReport your assessmentSigns of delirium always need to be reported to a nurse.Be as clear and detailed as possible.Thinking PointWhich of the following do you think will get the bestresponse?Careworker to nurse:‘Alfred appears to be confused. He wants to go andcatch chickens. He seems to have become confusedfollowing a urine infection last week’.Is much better than:‘Alfred is confused. You need to see him to sort it out’.DoManage the problemIt may be appropriate to treat the cause of delirium (if it isknown). However, at the end of life simple measures aimed atmanaging the symptoms may be preferable.Thinking PointImagine you are Alfred. It is night-time and you arelying in your bed. It is dark, no one is around and youare confused, frightened and not sure where you are.You hear noises outside your door that sometimesdisturb you. Perhaps you want to get out of bed tofind somewhere better to be.Look at the following lists of strategies. Which ofthese measures might help you feel less confusedand anxious?Environmental strategies 11• appropriate lighting• minimise noise especially at night• provide a clock that the resident can see• avoid room or location changes and keep personal andfamiliar objects in view• modify the environment to minimise the risk of injurye.g. low bed in the lowest position with cot sides down, bedagainst the wall, potential hazards such as beside tablesremoved.Clinical strategies 11• address anxiety; residents with delirium are often veryfrightened• manage discomfort or pain• minimise sensory deficits by providing and assisting withhearing and visual aidse.g. clean spectacles and remove wax deposits in hearing aids,check batteries are fresh and hearing aid is turned on• encourage the presence of people known to the residente.g. family and friends and regular staff members• reassure and reorientate the resident• explain and reassure the resident and/or family regardingthe possible causes of the delirium and describe themanagement plan• avoid use of physical restraints• use interpreters and communication aids for residentswith culturally and linguistically diverse needs (CaLD)• promote relaxation and sufficient sleepe.g. assisted by massage and/or encouraging wakefulnessduring the day• minimise use of indwelling catheters• medication reviewe.g. cease or reduce all non-essential medications; changeto a different opioid medication; utilise medications to targetagitation or hallucinations.

151 • Self Directed Learning Package - CareworkerWriteKey PointMany of these environmental and clinicalinterventions for delirium are within the scope ofcareworkers. When in doubt discuss with a nurse.Document your actionsMany residential aged care facilities expect careworkersto document information on assessment charts and inthe clinical record. If this is part of your role, try andavoid general statements. Be as specific as possible.Avoid general statementsPOOR COMMUNICATIONEvaluation of interventions ‘with effect’ or‘effective’.GOOD COMMUNICATION‘Resident has not reported hallucinationsin the last two hours and physicalplucking at the bed sheets has stopped’.ReviewEvaluate and reassess as necessaryIt is important to evaluate the effectiveness of the care youdeliver to residents.Every time you provide care to a resident, ask yourself:• Does it seem to be effective?• Is it doing any harm?Key PointDelirium can develop quickly, regular assessment isimportant.If you have any concerns, report them to the nurse(and document them if this is part of your role as acareworker).

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153 • Self Directed Learning Package - CareworkerEnd of life carecare pathwayTerminal care is care focused on the final days or weeks of life.Thinking PointIn the final scenes of the DVD, Alfred is likely to diewithin days or hours.• Have you experienced the death of a resident?• Were you aware that the resident was dying?• What signs of approaching death did you notice?Residents may experience some or all of the following whenapproaching death:• rapid day to day deterioration that is not reversible• requiring more frequent interventions• becoming semi-conscious with lapses into unconsciousness• increasing loss of ability to swallow• refusing or unable to take food, fluids or oral medications• irreversible weight loss• an acute event has occurred requiring revision oftreatment goals• profound weakness• changes in breathing patterns. 3What is an end of life care pathway?An end of life care pathway is a set of forms and protocols thatacts as a ‘road map’ to guide the care provided by doctors, nursesand careworkers in the last week of a resident’s life.There are several pathways used in RACFs and hospitals.We recommend the ‘Residential Aged Care End of LifeCare Pathway (RAC EoLCP)’. This pathway can be downloadedfrom the “PA Toolkit: Forms CD”.

154 • The Palliative Approach ToolkitThinking PointAlfred looks like he may die in the next day or so. Heis not eating and drinks only a few sips of water eachshift. He spends most of the time sleeping and needsassistance with all of his ADLs. When he is asked aquestion he sometimes opens his eyes but does notspeak. This has been a significant change for theworse from one week ago.Do you think he is displaying signs of approachingdeath?Key PointReport to a nurse if the resident appears to haveany of the following:• pain• nausea and vomiting• breathing difficulties• agitation• any redness or leaking around a subcutaneouscannula (butterfly needle).When someone is commenced on the RAC EoLCP the followingchanges to their care may occur:• Non-essential medications are stopped.• Changes occur in how other medications are administered.Medication may be administered by injection or under thetongue instead of orally. The medication may target pain,nausea, anxiety or breathing difficulties.• Non-essential clinical interventions and observations arestopped e.g. blood pressure monitoring, weighs, blood sugarmonitoring.• Special equipment may be organised e.g. a special pressurerelieving mattress or other comfort aids.What is the careworker’s role when a residentis on the RAC EoLCP?Your role includes delivering the care listed on the Pathway’scomfort care chart.The chart also sets out common comfort care measures that arereviewed at least every four hours:• comfortable positioning• couth care• eye care• skin care• micturition (urinary elimination)• bowel care.Support for resident and family membersThinking PointAlfred’s daughter Sarah has met you many timeswhen she visits her father. Today she approaches youand starts crying. She asks you how long you think itwill be until Alfred dies. What could you do?You may be asked to fill this in regularly during your shift.

155 • Self Directed Learning Package - CareworkerFamily members often spend many hours with the resident atthis time. They may share with you their sadness and grief. Theymay ask you questions about what is happening.Key PointIt is OK to respond to these questions so longas they are within your scope of practice as acareworker. If you are unsure of what to say (orthe questions are about nursing or medical issues),reassure the family and tell them you will ask thenurse to come and speak with them.When the resident diesWhen death occurs, the resident stops breathing and theheart stops beating. There will be no response to verbalor physical stimulation. The mouth and eyes may be open(the pupils will be large and fixed on one spot). The residentmay have also lost control of their bladder and bowel.Self-careKey PointNo one ever complained that someone cried; butthey have complained that no one seemed to care.Close relationships can develop between careworkers andresidents. It is important to be aware that when a resident dies,you may grieve as well. You are not expected to be a robot, andit is possible that you may feel sad, angry, upset, confused, guiltyor even relieved at this time. Feelings of grief are different foreveryone and are a normal reaction to a loss.The following suggestions may assist you with your grief:• ask the family’s permission to attend the funeral• talk to your supervisor or colleagues about how you arefeeling• seek support from a professional counsellor.If you are the first person to find a resident who has died,immediately notify a nurse. They will contact the doctor whowill need to legally certify that the resident has died.Grief and lossReminisce with family and friends of the deceased resident ifyou feel comfortable to do so. It shows you saw the resident asan individual, not just “another resident”.Acknowledge the grief of those around you. If family membersare visibly upset, you can say ‘It must be hard for you; it is adifficult time…’ Showing family members you are upset e.g.crying is all right.SUCCESS!You have completed Section 2 of the learning package.Please go on with the quiz.

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157 • Self Directed Learning Package - CareworkerSelf-directed learning package:Introductory careworker quizDon’tKnowSection 1TrueFalse1. With a palliative approach, the focus is on managing symptoms and increasing quality-of-life rather thancuring illness.2. A palliative approach discourages discussion about death and dying as it may upset the resident.3. A resident completes a written Advance Directive. This is considered a legal document.4. Shortness of breath is the same thing as dyspnoea.5. It is a good idea to ask a resident to rate his shortness of breath by asking him to count how many breathshe takes a minute.6. You are asked to help Bob shower this morning. You should rush him and get it over as quick as possiblethen he can take the rest of the day to recover.Section 27. Family members have the right to determine if a resident should attend a palliative care case conferenceon the grounds that ‘it will only upset him/her’.8. Regardless of the language a resident speaks or where they were born their care needs are the samewhen they are dying.9. If a competent resident tells you they have pain, is it good practice to ask how severe it is on a scale of 0 to 10.10. Facial expressions and vocalisations can indicate if a resident is experiencing pain.11. A resident commenced on opioid medicines such as morphine is likely to become addicted and themedication may not work later on as they become tolerant to its effects.12. Every resident who cannot eat or drink should be fed through a tube (e.g. PEG gastrostomy).13. Lemon and glycerine swabs can be used when a resident has a dry mouth.14. Urinary tract infections can bring on a delirium.15. A combination of changes in breathing patterns, decreased consciousness and irreversible weight lossmay be signs of approaching death.

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159 • Self Directed Learning Package - CareworkerSelf-directed learning package:Introductory careworker quiz answersSection 11. With a palliative approach, the focus is on managing symptoms and increasing quality-of-life rather thancuring illness.• A palliative approach aims to improve the quality-of-life for people with an eventually fatal condition andtheir families.• It does this by reducing their suffering through early identification, assessment and treatment of pain,physical, cultural, psychological, social and spiritual needs.• A palliative approach is not just for the end stages of an illness.TrueFalse2. A palliative approach discourages discussion about death and dying as it may upset the resident.• A palliative approach encourages open and early discussion about death and dying which helpsadvance care planning.3. A resident completes a written Advance Directive. This is considered a legal document.• So long as advance directives are filled out correctly including the appropriate witness’s signatures then yes,they are legal documents.• They set out a resident’s end of life care wishes or appoints another person as decision maker, usually calleda guardian or medical power of attorney.4. Shortness of breath is the same thing as dyspnoea.• Dyspnoea is an awareness of uncomfortable breathing and can also be called breathlessness or shortness of breath.5. It is a good idea to ask a resident to rate his shortness of breath by asking him to count how many breathshe takes a minute.• Because health professionals tend to under-report a patient’s breathlessness the resident should beencouraged to rate the severity themselves (if cognitively able).• This should be done using a vertical or horizontal rating scale from 0 (no shortness of breath) to 10 (severeshortness of breath).

160 • The Palliative Approach Toolkit6. You are asked to help Bob shower this morning. You should rush him and get it over as quick as possiblethen he can take the rest of the day to recover.• Residents with dyspnoea benefit from having a preventative plan of care that decreases the distress andanxiety of dyspnoea before it occurs.• Bob might take a small dose of opioid medication (e.g. morphine) at least ½ hour before showering (morphinecan be effective for breathless as well as pain).• Don’t rush or hurry Bob and allow rest periods during activities (decreases his need for oxygen andreduces anxiety).• In the bathroom, leave the exhaust fan on and make sure the shower water is deflected away from his face(prevents claustrophobia).TrueFalseSection 27. Family members have the right to determine if a resident should attend a palliative care case conferenceon the grounds that ‘it will only upset him/her’.• As careworkers our primary role is to provide resident centred care which includes advocating on the resident’s behalf.• Perhaps the resident would be upset about what is discussed, but it is up to them (while they are cognitivelyable to make decisions competently) to decide whether they will attend.• Most residents choose to attend case conferences and can provide insights into their condition that family andstaff may not have known about otherwise.• If a resident is likely to become distressed or fatigued, consider holding the case conference in their room wherethey can rest on the bed. Ask their permission to continue the discussion elsewhere with theremainder of those attending.8. Regardless of the language a resident speaks or where they were born their care needs are the same whenthey are dying.• All residents require careful assessment to ensure that assumptions are not made about cultural needs basedon a resident’s language, religion or country of origin. Similarly, the care needs for members of our indigenouspopulation (Aboriginal and Torres Strait Islanders) requires careful assessment and planning.9. If a competent resident tells you they have pain, is it good practice to ask how severe it is on a scale of 0 to 10.• The use of horizontal or vertical pain scale which asks the person to rate 0 (no pain) or 10(worst pain possible) is good practice to assess pain for compentent residents who do not have severe cognitiveimpairment e.g. advanced dementia.10. Facial expressions and vocalisations can indicate if a resident is experiencing pain.• The Abbey Pain Scale lists whimpering, groaning, and crying as possible indicators of pain.

161 • Self Directed Learning Package - Careworker11. A resident commenced on opioid medicines such as morphine is likely to become addicted and themedication may not work later on as they become tolerant to its effects.• Some strong analgesics are called opioids e.g. morphine, oxycodone or fentanyl.• Sometimes residents or their family members may be concerned about these medications. It is important toknow that when used correctly they:- do not lead to addiction or dependence- do not hasten death- are not just for when the resident is dying.TrueFalse12. Every resident who cannot eat or drink should be fed through a tube (e.g. PEG gastrostomy).• There is no evidence that tube feeding prolongs life, improves comfort or quality-of-life, prevents aspirationpneumonia, leads to better nourishment or decreases the risk of pressure sores.• Although artificial hydration can be useful to treat reversible causes of dehydration, it is not normally usedwhen a resident is expected to die within 48 - 72 hours.13. Lemon and glycerine swabs can be used when a resident has a dry mouth.• Do not use mouthwashes and swabs containing:- lemon and glycerine- sodium bicarbonate (high strength)- preparations containing alcohol or hydrogen peroxide- pineapple or other juices.14. Urinary tract infections can bring on a delirium.• Urine infections are a common cause of older people becoming confused.15. A combination of changes in breathing patterns, decreased consciousness and irreversible weight lossmay be signs of approaching death.A combination of changes in breathing patterns, decreased consciousness and irreversible weight loss may besigns of approaching death.Three or more of the following indicates an End of Life Care Pathway may be appropriate and that the residentis likely to be approaching death:• rapid day to day deterioration that is not reversible• requiring more frequent interventions• becoming semi-conscious with lapses into unconsciousness• increasing loss of ability to swallow• refusing or unable to take food, fluids or oral medications• irreversible weight loss• an acute event has occurred requiring revision of treatment goals• profound weakness• changes in breathing patterns.

162 • The Palliative Approach ToolkitBibliography – SDLP - Careworker (Introduction)1Australian Institute of Health and Welfare (2010) Australia’s Health 2010. Cat. no. AUS122. Canberra: AIHW2Australian Pain Society (2005) Pain in Residential Aged Care Facilities: ManagementStrategies. Viewed 14 July 2009 http://www.apsoc.org.au/owner/files/9e2c2n.pdf3Brisbane South Palliative Care Collaborative, Queensland Health/ Griffith University(2010a) Residential Aged Care End of Life Care Pathway (RAC EoLCP), Brisbane4Commonwealth of Australia (2006a) Guidelines for a Palliative Approach inResidential Aged Care – Enhanced Version, Canberra5Commonwealth of Australia (2006b) Guidelines for a Palliative Approach inResidential Aged Care – Navigational Tool, Canberra6Finucane TE, Christmas C, Travis K (1999) Tube feeding in patients with advanceddementia: a review of the evidence. JAMA. 282(14):1365-707. Merl H and Bauer L (2010) Planning what I want now. Viewed 12 September 2010http://www.planningwhatiwant.com.au8Palliative Care Council of South Australia Inc. (1996) Good Palliative Care Plan.9Queensland Government (2004) Advance Health Directive (Form 4). Department ofJustice and Attorney General, Viewed 12 May 2010 http://www.justice.qld.gov.au/__data/assets/pdf_file/0007/15982/advance-health-directive.pdf10SA Dental Service (2009) Oral Health Planning Guidelines. Viewed 7 August 2010http://www.sadental.sa.gov.au/Portals/57ad7180-c5e7-49f5-b282-c6475cdb7ee7/BOHRCProfessiona-Portfolio-10-2-11.pdf11Victorian Government Department of Human Services (2006) Clinical PracticeGuidelines for the Management of Delirium in Older People. Viewed 14 July 2009http://www.health.vic.gov.au/acute-agedcare/delirium-cpg.pdf12Winton T (2009) Breath. Penguin, Sydney13World Health Organisation (2010) WHO Definition of Palliative Care, Viewed 26September 2010http://www.who.int/cancer/palliative/definition/en/

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