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Perspectives in Hospice Palliative Care: Nursing

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<strong>Hospice</strong> <strong>Palliative</strong> <strong>Care</strong> Nurs<strong>in</strong>g Standards:How do these apply to our practice?Jacquie Peden, Darlene Grantham and Marie-Josée Paqu<strong>in</strong>Nurs<strong>in</strong>g standards, which arebased on the values of thenurs<strong>in</strong>g profession, are developed byprov<strong>in</strong>cial and territorial regulatorybodies across Canada to guide anddirect nurs<strong>in</strong>g practice. Specialtygroups <strong>in</strong> conjunction with theCanadian Nurses Association (CNA),promote nurs<strong>in</strong>g standards to serveas a basis for nurs<strong>in</strong>g certificationwith<strong>in</strong> each specialty area. <strong>Hospice</strong>palliative care (HPC) is one specialtyarea that has recently created nurs<strong>in</strong>gstandards. The purpose of HPC isto relieve suffer<strong>in</strong>g and improve thequality of life for persons who areliv<strong>in</strong>g with or dy<strong>in</strong>g from advancedillness, or are bereaved (4).Why are <strong>Hospice</strong> <strong>Palliative</strong><strong>Care</strong> Nurs<strong>in</strong>g Standards (HPCNS)important? How can these standardsbe applied to our nurs<strong>in</strong>g practice?Accord<strong>in</strong>g to the CNA (2), “Standardsare necessary to demonstrate tothe public, government and otherstakeholders that a profession isdedicated to ma<strong>in</strong>ta<strong>in</strong><strong>in</strong>g publictrust and uphold<strong>in</strong>g the criteria of itsprofessional practice.” Standards area measure of performance that reflectthe values of the nurs<strong>in</strong>g professionand enable nurses to promote safe,competent and ethical practice.HPCNS serve as a guide for nurs<strong>in</strong>gpractice and clearly identify the role ofthe hospice palliative care nurse (1).The purpose of HPCNS is todef<strong>in</strong>e the standard of care that can beexpected, establish requisite knowledgefor nurs<strong>in</strong>g persons and families withadvanced illness, support on-go<strong>in</strong>gdevelopment of hospice palliative carenurs<strong>in</strong>g, promote hospice palliativecare nurs<strong>in</strong>g as a specialty and serve asthe foundation for the development ofcertification <strong>in</strong> hospice palliative care.The HPCNS are reflective ofthe CPCA 2001 Proposed Norms ofPractice for hospice palliative care. Theframework used for these standardsis based on six dimensions: valu<strong>in</strong>g,connect<strong>in</strong>g, empower<strong>in</strong>g, do<strong>in</strong>g for,Page 2<strong>Perspectives</strong> on <strong>Hospice</strong> <strong>Palliative</strong> <strong>Care</strong>: Nurs<strong>in</strong>g


<strong>Hospice</strong> palliative care isaimed at relief of suffer<strong>in</strong>gand improv<strong>in</strong>g the qualityof life for persons who areliv<strong>in</strong>g with or dy<strong>in</strong>g fromadvanced illness orare bereaved.Davies and Oberleas cited <strong>in</strong> CHPCA Nurs<strong>in</strong>gStandards (2002)Connect<strong>in</strong>gEmpower<strong>in</strong>gf<strong>in</strong>d<strong>in</strong>g mean<strong>in</strong>g, and preserv<strong>in</strong>g<strong>in</strong>tegrity, of the Supportive <strong>Care</strong> Model(4). Each dimension represents astandard:I. The hospice palliative care nursebelieves <strong>in</strong> the <strong>in</strong>tr<strong>in</strong>sic worth ofothers, the value of life and thatdeath is a natural process.II. The hospice palliative care nurseestablishes a therapeutic connection(relationship) with the person andfamily through mak<strong>in</strong>g, susta<strong>in</strong><strong>in</strong>gand clos<strong>in</strong>g the relationship.III. The hospice palliative care nurseprovides care <strong>in</strong> a manner that isempower<strong>in</strong>g for the person andfamily.IV. The hospice palliative care nurseprovides care based on bestpractice and/or evidence-basedpractice <strong>in</strong> the follow<strong>in</strong>g areas:pa<strong>in</strong> and symptom management,coord<strong>in</strong>ation of care, and advocacy.V. The hospice palliative care nurseassists the person and family to f<strong>in</strong>dmean<strong>in</strong>g <strong>in</strong> their lives and theirexperience of illness.VI. The hospice palliative care nursepreserves the <strong>in</strong>tegrity of self, personand family.Preserv<strong>in</strong>gIntegrityValu<strong>in</strong>gDo<strong>in</strong>g forF<strong>in</strong>d<strong>in</strong>g Mean<strong>in</strong>gAlthough these standards arespecific to hospice palliative carenurs<strong>in</strong>g, there are components ofthe standards that are fundamentalto nurs<strong>in</strong>g practice and can guidenurses who provide end-of-life care.For example, the nurse advocates forpersons and families, listens activelyas an <strong>in</strong>tegral part of communication,establishes a plan of care <strong>in</strong>collaboration with the person andfamily, advocates for appropriate pa<strong>in</strong>and symptom management, assiststhe person and family to ma<strong>in</strong>ta<strong>in</strong>a sense of control, and providescomprehensive, compassionate andco-ord<strong>in</strong>ated care (1).However, these standards alsodemonstrate how hospice palliativecare nurs<strong>in</strong>g is a specialty thatrequires specialized knowledge andskills. Grantham (5), <strong>in</strong> a Manitobastudy, found that, <strong>in</strong> general, hospicepalliative care nurses felt preparedto use these standards. However, shereported practice challenges <strong>in</strong> all sixstandards. With regard to StandardI (Valu<strong>in</strong>g), 70% of nurses feltprepared to advocate for all persons atend of life but not prepared to assistthe person <strong>in</strong> f<strong>in</strong>d<strong>in</strong>g mean<strong>in</strong>g <strong>in</strong> lifeand achiev<strong>in</strong>g the best quality of lifeas def<strong>in</strong>ed by the person. In StandardII (Connect<strong>in</strong>g) all nurses feltprepared to connect with persons andfamilies by establish<strong>in</strong>g therapeuticrelationships, but 50% of them feltunprepared <strong>in</strong> conduct<strong>in</strong>g a culturaland spiritual assessment. In StandardIII (Empower<strong>in</strong>g) 65% of nurses feltunprepared to address sensitive andemotionally charged issues. StandardIV (Do<strong>in</strong>g For) concerns focusedon end-of-life policy (55%) while50% of nurses were concerned aboutdeal<strong>in</strong>g with special populations.Standard V (F<strong>in</strong>d<strong>in</strong>g Mean<strong>in</strong>g) raisedPage 3<strong>Perspectives</strong> on <strong>Hospice</strong> <strong>Palliative</strong> <strong>Care</strong>: Nurs<strong>in</strong>g


Nurs<strong>in</strong>g standards aredesigned as a benchmarkto measure the nurse’sperformance but are alsoused as the foundation forthe development of nurs<strong>in</strong>gcompetencies and guidel<strong>in</strong>esfor practiceeducation concerns about the balancebetween hope and suffer<strong>in</strong>g (65%)and results relat<strong>in</strong>g to StandardVI (Preserv<strong>in</strong>g Integrity of theSupportive <strong>Care</strong> Model) showed that50% of the nurses were concernedabout participat<strong>in</strong>g <strong>in</strong> researchactivities appropriate to practice.<strong>Palliative</strong> care nurses also reportedthat lack of time was a practicechallenge: they would like to havemore time to establish therapeuticrelationships and to spend at thebedside.Nurs<strong>in</strong>g standards not only guidenurs<strong>in</strong>g practice but can be applied <strong>in</strong>the follow<strong>in</strong>g ways:• by develop<strong>in</strong>g new models ofnurs<strong>in</strong>g care delivery, throughstaff orientation and cont<strong>in</strong>u<strong>in</strong>geducation programs, whenevaluat<strong>in</strong>g performance withcareer plann<strong>in</strong>g and professionaldevelopment• by determ<strong>in</strong><strong>in</strong>g appropriate referralsfor nurs<strong>in</strong>g consultation with<strong>in</strong> aspecialty area• by ensur<strong>in</strong>g quality of nurs<strong>in</strong>gcare through <strong>in</strong>creas<strong>in</strong>g publicawareness about the nurs<strong>in</strong>g roles ofa specialty area• by creat<strong>in</strong>g an environment forexcellence <strong>in</strong> nurs<strong>in</strong>g practice (3).Nurs<strong>in</strong>g standards are designedas benchmarks to measure a nurse’sperformance but are also used as thefoundation for the development ofnurs<strong>in</strong>g competencies and guidel<strong>in</strong>esfor practice. Therefore, nurs<strong>in</strong>gstandards are useful tools for nurses <strong>in</strong>determ<strong>in</strong><strong>in</strong>g what knowledge and skillsare required to provide quality care.Page 4<strong>Perspectives</strong> on <strong>Hospice</strong> <strong>Palliative</strong> <strong>Care</strong>: Nurs<strong>in</strong>g


ResourcesCanadian <strong>Hospice</strong> <strong>Palliative</strong> <strong>Care</strong> Association Nurs<strong>in</strong>g Standardshttp://www.chpca.net/<strong>in</strong>terest_groups/nurses/<strong>Hospice</strong>_<strong>Palliative</strong>_<strong>Care</strong>_Nurs<strong>in</strong>g_Standards_of_Practice.pdfA Model to Guide <strong>Hospice</strong> <strong>Palliative</strong> <strong>Care</strong> http://www.chpca.net/publications/norms_of_practice.htmCanadian <strong>Hospice</strong> <strong>Palliative</strong> <strong>Care</strong> Association http://www.chpca.net/home.htmReferences1. Canadian <strong>Hospice</strong> <strong>Palliative</strong> <strong>Care</strong> Association Nurs<strong>in</strong>g StandardsCommittee. (2002). <strong>Hospice</strong> palliative care nurs<strong>in</strong>g standards of practice.Ottawa, ON: Canadian <strong>Hospice</strong> <strong>Palliative</strong> <strong>Care</strong> Association.2. Canadian Nurses Association (1996). Standards. Retrieved September 7,2004, from http://cna-aiic.ca/CNA/practice/standards/default_e.aspx3. Canadian Oncology Nurs<strong>in</strong>g Education Committee (2002). Toolkit forunderstand<strong>in</strong>g and apply<strong>in</strong>g standards of care, roles on oncology nurs<strong>in</strong>g, rolecompetencies. Vancouver, BC: Canadian Association of Nurses <strong>in</strong> Oncology.Retrieved September 7, 2004, from http://www.cos.ca/cano/web/en/dissem<strong>in</strong>ation_toolkit_eng.pdf4. Ferris, F.D., Balfour, H.M., Bowen, K., Farley, J., Hardwick, M.,Lamontagne, C., Lundy, M., Syme, A.. and West, P.J. (2002). A modelto guide hospice palliative care: Based on national pr<strong>in</strong>ciples and norms ofpractice. Ottawa, ON: Canadian <strong>Hospice</strong> <strong>Palliative</strong> <strong>Care</strong> Association.5. Grantham, D. (2004). Preparedness of Manitoba <strong>Palliative</strong> <strong>Care</strong> Nursesto Practice Us<strong>in</strong>g Canadian <strong>Hospice</strong> <strong>Palliative</strong> <strong>Care</strong> Nurs<strong>in</strong>g Standards.Manitoba, (Unpublished).Page 5<strong>Perspectives</strong> on <strong>Hospice</strong> <strong>Palliative</strong> <strong>Care</strong>: Nurs<strong>in</strong>g


End-of-Life <strong>Care</strong>: Whose bus<strong>in</strong>ess is it?Jacquie Peden, Carolyn Tayler and Carleen BrenneisEnd-of-life care is provided<strong>in</strong> many health care sett<strong>in</strong>gs<strong>in</strong>clud<strong>in</strong>g <strong>in</strong>tensive care, emergencydepartments, renal dialysis andneonatal units, as well as at home and<strong>in</strong> residential care for patients of allages, <strong>in</strong>clud<strong>in</strong>g children. While weoften th<strong>in</strong>k of cancer patients as atend of life, a prolonged period of timepreced<strong>in</strong>g death is a part of manychronic disease trajectories. Endof-lifecare is every nurse’s bus<strong>in</strong>ess.Therefore, wherever a nurse is work<strong>in</strong>ghe or she will need to be skilled <strong>in</strong>provid<strong>in</strong>g compassionate and effectiveend-of-life care.Strategies for ensur<strong>in</strong>g quality endof-lifecare should be <strong>in</strong>tegrated <strong>in</strong>toevery nurse’s practice. These <strong>in</strong>clude:• communicat<strong>in</strong>g openly, honestlyand <strong>in</strong> a timely fashion• ma<strong>in</strong>ta<strong>in</strong><strong>in</strong>g comfort• ensur<strong>in</strong>g social support and carefor caregivers• apply<strong>in</strong>g the pr<strong>in</strong>ciples of palliativecare• ensur<strong>in</strong>g that care is ethically,spiritually and culturallyappropriate (3).Effective communication is oneof the foundational concepts thatform the bases of hospice palliativecare (1). Communicat<strong>in</strong>g effectively<strong>in</strong>volves provid<strong>in</strong>g patients and theirfamilies with <strong>in</strong>formation so that theyare able to make decisions about care,<strong>in</strong>itiat<strong>in</strong>g discussions about end-oflifecare when the patient can activelyparticipate, and facilitat<strong>in</strong>g discussionswith patients and their families <strong>in</strong> asupportive and compassionate manner.<strong>Hospice</strong> palliative care is aimedat relief of suffer<strong>in</strong>g and improv<strong>in</strong>gthe quality of life for persons who areliv<strong>in</strong>g with or dy<strong>in</strong>g from advancedillness, or are bereaved (1). <strong>Hospice</strong>palliative care is more focused thanend-of-life care and can be providedalong the disease trajectory wherepeople need help with suffer<strong>in</strong>g andsymptom management. It tends to beorganized as a set of services. End-oflifecare refers to the reliable, skillfulPage 6<strong>Perspectives</strong> on <strong>Hospice</strong> <strong>Palliative</strong> <strong>Care</strong>: Nurs<strong>in</strong>g


Nurses need to exploretheir own attitudes, values,and beliefs about issuessurround<strong>in</strong>g death to improvecommunication and maximizeend of life careand supportive care of people withadvanced, potentially fatal illness andthose close to them (2).Information shar<strong>in</strong>g and decisionmak<strong>in</strong>g are essential and basic steps <strong>in</strong>the process of provid<strong>in</strong>g and plann<strong>in</strong>gcare. Several pr<strong>in</strong>ciples of palliativecare are:• the patient and family are treatedas a unit of care and the familyshould be <strong>in</strong>cluded <strong>in</strong> decisionmak<strong>in</strong>gprocesses wheneverpossible• patients and family members needto be <strong>in</strong>formed so that they areable to make decisions, determ<strong>in</strong>egoals for care and establishpresent and future priorities forcare (1).It is important to provideseniors and their caregivers with<strong>in</strong>formation so that they are ableto make appropriate care decisions,but this <strong>in</strong>formation needs to begiven <strong>in</strong>crementally so it is notoverwhelm<strong>in</strong>g (3).Nurses <strong>in</strong> all areas of healthcare play a key role <strong>in</strong> <strong>in</strong>itiat<strong>in</strong>gdiscussions with patients about endof-lifedecisions regard<strong>in</strong>g care. Inchronic disease, where patients slowlydecl<strong>in</strong>e or their health status fluctuates,it is often difficult to determ<strong>in</strong>ewhen the end-of-life is approach<strong>in</strong>g.Discussions with patients fail<strong>in</strong>g toimprove <strong>in</strong> an <strong>in</strong>tensive care sett<strong>in</strong>gneed to take place at the earliestpossible opportunity (7). In adocument about promot<strong>in</strong>g excellence<strong>in</strong> end of life care for <strong>in</strong>dividuals withamyotrophic lateral sclerosis (ALS), sixtriggers for <strong>in</strong>itiat<strong>in</strong>g discussion aboutend-of-life issues were listed:• the patient or family open<strong>in</strong>g thedoor to discussions about end-oflifecare• evidence of severe psychological,social or spiritual distress or pa<strong>in</strong>which requires high doses ofanalgesic• the occurrence of dyspagia,requir<strong>in</strong>g a feed<strong>in</strong>g tube,• dyspnea• forced vital capacity of less than50%• loss of function <strong>in</strong> two bodyregions (5).With patients experienc<strong>in</strong>g thesek<strong>in</strong>ds of signs and symptoms it isimportant to <strong>in</strong>itiate a discussionsabout end-of-life care before a crisisoccurs that prevents patients frombe<strong>in</strong>g active participants <strong>in</strong> plann<strong>in</strong>gtheir care.Discussions with patients andtheir families about end-of-life care arechalleng<strong>in</strong>g and difficult to <strong>in</strong>itiate.How does the nurse talk about deathand dy<strong>in</strong>g? Nurses need to exploretheir own attitudes, values and beliefsabout issues surround<strong>in</strong>g death toimprove communication and maximizeend of life care (8). When assist<strong>in</strong>gpatients and families to make decisionsabout end-of-life care the nurse should:• be clear and avoid euphemisms• be specific about goals andexpectations of treatmentPage 7<strong>Perspectives</strong> on <strong>Hospice</strong> <strong>Palliative</strong> <strong>Care</strong>: Nurs<strong>in</strong>g


• be will<strong>in</strong>g to <strong>in</strong>itiate and engage <strong>in</strong>discussion• use the words the “death” and“dy<strong>in</strong>g”• talk about hope, clarify goals andburdens of treatment and prognosis• collaborate with other providers togive consistent <strong>in</strong>formation (6).Effective communication is everynurse’s bus<strong>in</strong>ess when provid<strong>in</strong>g endof-lifecare. Dur<strong>in</strong>g a therapeuticencounter the nurse assesseswhether the patient and family havean understand<strong>in</strong>g and sense ofcomplexity of the patient’s illness,explores concerns, and answersquestions. Effective communication,when comb<strong>in</strong>ed with <strong>in</strong>formedand skilled decision mak<strong>in</strong>g, leadsto better care delivery decisions,less conflict, a more effective planof care, greater patient, family andcaregiver satisfaction with therapeuticrelationships, fewer caregiver errors,less stress and fewer burnout andretention problems (1).ResourcesCanadian <strong>Hospice</strong> <strong>Palliative</strong> <strong>Care</strong> Association http://www.chpca.net/home.htmA Model to Guide <strong>Hospice</strong> <strong>Palliative</strong> <strong>Care</strong>http://www.chpca.net/publications/norms_of_practice.htmComplet<strong>in</strong>g the cont<strong>in</strong>uum of ALS care: A consensus document.http://www.promot<strong>in</strong>gexcellence.org/als/als_report/A Guide to End-of-Life <strong>Care</strong> for Seniors www.rgp.toronto.on.ca/iddg/<strong>in</strong>dex.htmReferences1. Ferris, F.D., Balfour, H.M., Bowen, K., Farley, J., Hardwick, M.,Lamontagne, C., Lundy, M., Syme, A. and West, P.J. (2002). A modelto guide hospice palliative care: Based on national pr<strong>in</strong>ciples and norms ofpractice. Ottawa, ON: Canadian <strong>Hospice</strong> <strong>Palliative</strong> <strong>Care</strong> Association.2. Field, M.J., and Cassel, C.K. (Eds.); Committee on <strong>Care</strong> at the End of Life,Institute of Medic<strong>in</strong>e. (1997) Approach<strong>in</strong>g Death: Improv<strong>in</strong>g <strong>Care</strong> at theEnd of Life. Wash<strong>in</strong>gton, D.C: National Academy Press.3. Fisher, R., Ross, M. and Maclean, M. (2001). A comprehensive to end oflife care for seniors. Stride Magaz<strong>in</strong>e, May/July, 16-18.4. Foti, M.E., Okun, S.N., Wogr<strong>in</strong>, C. and Corbeil, Y.J. (2003). Thecurriculum for mental health providers: End of life care for persons withserious mental illness. Massachusetts Department of Mental Health, MetroSuburban Area.5. Mitsumoto, H., ALS Peer Workgroup Chair and ALS Peer WorkgroupMembers (2004). Complet<strong>in</strong>g the cont<strong>in</strong>uum of ALS care: A consensusdocument. Retrieved September 7, 2004, fromhttp://www.promot<strong>in</strong>gexcellence.org/als/als_report/6. Norton, S.A. and Tallerico, K.A. (2000). Facilitat<strong>in</strong>g end-of-lifedecision-mak<strong>in</strong>g: Strategies for communicat<strong>in</strong>g and assess<strong>in</strong>g. Journal ofGerontological Nurs<strong>in</strong>g, 26(9), 6-13.7. Rocker, G.M., Shemie, S.D. and Lacroix, J. (2000). End-of-life issues<strong>in</strong> ICU: A need for acute palliative care? Journal of <strong>Palliative</strong> <strong>Care</strong> 16Supplement, S5-S6.8. Valente, S.M. (2001). End-of-life issues. Geriatric Nurs<strong>in</strong>g, 22(6), 294-298.Page 8<strong>Perspectives</strong> on <strong>Hospice</strong> <strong>Palliative</strong> <strong>Care</strong>: Nurs<strong>in</strong>g


Common Myths of <strong>Hospice</strong> <strong>Palliative</strong> <strong>Care</strong>Jacquie Peden, Elizabeth Hill, Daphne Powell“People with cancer die <strong>in</strong>excruciat<strong>in</strong>g pa<strong>in</strong>.” Parents,grandparents and great-grandparentshave heard stories about people withcancer who died <strong>in</strong> pa<strong>in</strong> and cont<strong>in</strong>ueto believe that this is true. This beliefis becom<strong>in</strong>g a myth as countriesadvance <strong>in</strong> the understand<strong>in</strong>g ofcancer pa<strong>in</strong> and its management.What do you believe about hospicepalliative care? Do you believe thatthis type of care means comfort at theend of life, that it is only for thosewith a cancer diagnosis, or that tell<strong>in</strong>gsomeone they are dy<strong>in</strong>g will take awaytheir hope?We will discuss these and othercommon myths about hospicepalliative care and will suggest how todispel them.The first step is to expla<strong>in</strong> whathospice palliative care is. Accord<strong>in</strong>gto Ferris, the term “hospice palliativecare” was co<strong>in</strong>ed so that the hospiceand palliative care movements couldbecome one with the same pr<strong>in</strong>ciplesand norms of practice. <strong>Hospice</strong>palliative care is aimed at the relief ofsuffer<strong>in</strong>g and improv<strong>in</strong>g the qualityof life for persons who are liv<strong>in</strong>g withor dy<strong>in</strong>g from advanced illness, or arebereaved. “<strong>Hospice</strong> palliative carestrives to help patients and families:address physical, psychological, social,spiritual, and practical issues, andtheir associated expectations, needs,hopes, and fears; prepare for andmanage self-determ<strong>in</strong>ed life closureand the dy<strong>in</strong>g process; [and] copewith loss and grief dur<strong>in</strong>g the illnessand bereavement” (4).Myth: <strong>Hospice</strong> palliative caremeans provid<strong>in</strong>g comfortwhen someone is dy<strong>in</strong>g.<strong>Hospice</strong> palliative care is muchmore than provid<strong>in</strong>g comfort.“<strong>Hospice</strong> palliative care aims to:treat all active issues, prevent newissues from occurr<strong>in</strong>g [and] promoteopportunities for mean<strong>in</strong>gful andvaluable experiences, personalPage 9<strong>Perspectives</strong> on <strong>Hospice</strong> <strong>Palliative</strong> <strong>Care</strong>: Nurs<strong>in</strong>g


Hope is <strong>in</strong>fluenced byphysical condition, pa<strong>in</strong>,relationships, faith andthe focus of hope changesas the patient’s conditionFocusof <strong>Care</strong>deteriorates.and spiritual growth, and selfactualization”(4). The activetreatment of issues may meanadm<strong>in</strong>ister<strong>in</strong>g blood transfusions toa patient experienc<strong>in</strong>g dyspnea dueto low hemoglob<strong>in</strong> or adm<strong>in</strong>ister<strong>in</strong>gantibiotics to a patient withpneumonia suffer<strong>in</strong>g from feverand chills at the end of life. Thesetreatments are not meant to cure theproblems but are given to relieve thesymptoms. Symptom managementis primary and it is important totreat sources of suffer<strong>in</strong>g whetherthe suffer<strong>in</strong>g is physical, emotional,social, or spiritual (2).Myth: <strong>Hospice</strong> palliative carestarts when someone is closeto dy<strong>in</strong>g and ends at death.The focus of hospice palliativecare starts at the time of diagnosis oracute phase of the term<strong>in</strong>al illness,cont<strong>in</strong>ues through the trajectory ofthe illness and extends beyond thepatient’s death to the family dur<strong>in</strong>gbereavement. <strong>Care</strong> dur<strong>in</strong>g thistime depends on the patient’s andfamily’s goals of care and priorities fortreatment (4). The <strong>in</strong>tensity of carefluctuates and <strong>in</strong>creases closer to theend of life.The Role of <strong>Hospice</strong> <strong>Palliative</strong> <strong>Care</strong> Dur<strong>in</strong>g IllnessPresentation/DiagnosisTherapy to modify diseaseAcuteTimeRepr<strong>in</strong>ted with permission of CHPCA.IllnessChronic<strong>Hospice</strong> <strong>Palliative</strong> <strong>Care</strong>Therapy to relievesuffer<strong>in</strong>g and/or improvequality of lifePatient’sDeathAdvanced BereavementLifethreaten<strong>in</strong>gEnd-of-life <strong>Care</strong>Myth: <strong>Hospice</strong> palliativecare is for people dy<strong>in</strong>g withcancer.Traditionally this has been so,but patients with a life-threaten<strong>in</strong>gchronic illness do benefit fromhospice palliative care services thatpromote quality end-of-life care:“<strong>Hospice</strong> palliative care is appropriatefor any patient and/or family liv<strong>in</strong>gwith, or at risk of develop<strong>in</strong>g, alife-threaten<strong>in</strong>g illness due to anydiagnosis, with any prognosis,regardless of age, and at any timethey have unmet expectations and/orneeds and are prepared to acceptcare” (4).Myth: Tell<strong>in</strong>g patients theyare dy<strong>in</strong>g takes away theirhope.This may seem true <strong>in</strong>itially but,when faced with a life-threaten<strong>in</strong>gillness, patients often go through agriev<strong>in</strong>g process that <strong>in</strong>cludes anger,denial, blam<strong>in</strong>g, and depression.Hope is <strong>in</strong>fluenced by physicalcondition, pa<strong>in</strong>, relationships, faithand the focus of hope changes as thepatient’s condition deteriorates (3).Accord<strong>in</strong>g to Duggleby (3), the focusof hope is described differently by theterm<strong>in</strong>ally ill patient. She reviewedf<strong>in</strong>d<strong>in</strong>gs from a number of researchstudies and found that term<strong>in</strong>allyill patients describe hope as “liv<strong>in</strong>gday to day, feel<strong>in</strong>g better, relief ofpa<strong>in</strong>, not suffer<strong>in</strong>g more, peacefuldeath, life after death and hope forfamilies.” It is important to tellpatients that they are dy<strong>in</strong>g so thatthey have opportunities to process theimplications of dy<strong>in</strong>g, can reconcilewith loved ones, leave legacies orexplore the mean<strong>in</strong>g of their lives.Page 10<strong>Perspectives</strong> on <strong>Hospice</strong> <strong>Palliative</strong> <strong>Care</strong>: Nurs<strong>in</strong>g


Myth: Increas<strong>in</strong>g the dose ofopioids causes respiratorydepression and quickensdeath.“Respiratory depression mayoccur if the <strong>in</strong>itial dose is far too high,doses are <strong>in</strong>creased too rapidly, dose<strong>in</strong>creases are too great <strong>in</strong> people withrespiratory disorders, other centrallyact<strong>in</strong>g drugs such as benzodiazep<strong>in</strong>esor alcohol are concurrently given, [or]an opioid switch to methadone hasoccurred [and the dose of methadoneis too high]” (1). Over time, patientsbecome tolerant to opioid sideeffects such as respiratory depression,sedation and nausea (5). Perceivedrisks of respiratory depressionand lethargy act as barriers to thetreatment of pa<strong>in</strong> and decreas<strong>in</strong>gor elim<strong>in</strong>at<strong>in</strong>g an opioid becausea patient near death experiencesdecreased levels of consciousness is notappropriate (6). Patients who havenot had significant <strong>in</strong>creases <strong>in</strong> theiropioid are likely tolerant to its sedativeeffects so decreas<strong>in</strong>g an opioid becauseof lethargy puts the patient at risk ofdy<strong>in</strong>g <strong>in</strong> pa<strong>in</strong> (6).Health care professionals often feelthey have failed when someone dies.Dy<strong>in</strong>g is a natural part of life. Life isterm<strong>in</strong>al. Therefore it is importantthat nurses become aware of hospicepalliative care pr<strong>in</strong>ciples, services andpractices so that misconceptions donot <strong>in</strong>fluence the care of the dy<strong>in</strong>gpatient and their families.Page 11<strong>Perspectives</strong> on <strong>Hospice</strong> <strong>Palliative</strong> <strong>Care</strong>: Nurs<strong>in</strong>g


ResourcesCanadian <strong>Hospice</strong> <strong>Palliative</strong> <strong>Care</strong> Association Nurs<strong>in</strong>g Standardshttp://www.chpca.net/<strong>in</strong>terest_groups/nurses/<strong>Hospice</strong>_<strong>Palliative</strong>_<strong>Care</strong>_Nurs<strong>in</strong>g_Standards_of_Practice.pdfA Model to Guide <strong>Hospice</strong> <strong>Palliative</strong> <strong>Care</strong>http://www.chpca.net/publications/norms_of_practice.htmCanadian <strong>Hospice</strong> <strong>Palliative</strong> <strong>Care</strong> Association http://www.chpca.net/sigs/nurse_sig.htmReferences1. Brenneis, C., Bruera, E., Campbell, S., Cantwell, P., Clark, T., Chobanuk,J., deMossac, D., Fa<strong>in</strong>s<strong>in</strong>ger, R., Frank, G., Hycha, D., Hunter, S., Kanji,T., Peden, J., MacKay, S., Macmillan, K., McK<strong>in</strong>non, S., Perry, B., ReadPaul, L., Squires, K., and Turco, S. (2002). 99 Common questions (and more)about palliative care: A nurses’ handbook (2 nd ed.). Edmonton, AB: Regional<strong>Palliative</strong> <strong>Care</strong> Program.2. Byock, I. (2000). Complet<strong>in</strong>g the cont<strong>in</strong>uum of cancer care: Integrat<strong>in</strong>g lifeprolongationand palliation. CA – A Cancer Journal for Cl<strong>in</strong>icians, 50(2), 123-132.3. Duggleby, W. (2001). Hope at the end of life. Journal of <strong>Hospice</strong> and<strong>Palliative</strong> Nurs<strong>in</strong>g, 3(2), 51-64.4. Ferris, F.D., Balfour, H.M., Bowen, K., Farley, J., Hardwick, M.,Lamontagne, C., Lundy, M., Syme, A.. and West, P.J. (2002). A modelto guide hospice palliative care: Based on national pr<strong>in</strong>ciples and norms ofpractice. Ottawa, ON: Canadian <strong>Hospice</strong> <strong>Palliative</strong> <strong>Care</strong> Association.5. Jovey, R.D. (2002). Opioids, pa<strong>in</strong> and addiction. In R.D. Jovey (Ed.),Manag<strong>in</strong>g pa<strong>in</strong>: The Canadian healthcare professional’s reference (pp. 63-77).Toronto, ON: Healthcare and F<strong>in</strong>ancial Publish<strong>in</strong>g, Rogers Media.6. Kazanowski, M.K., Laccetti, M.S. (2002). Pa<strong>in</strong>. Thorofare, NJ: Slack.Page 12<strong>Perspectives</strong> on <strong>Hospice</strong> <strong>Palliative</strong> <strong>Care</strong>: Nurs<strong>in</strong>g


ContributorsCarleen Brenneis RN MHSAProgram DirectorRegional <strong>Palliative</strong> <strong>Care</strong> ProgramEdmonton, ABEmail: CBrennei@cha.ab.caCarleen Brenneis is Program Director of Capital Health’s Regional <strong>Palliative</strong> <strong>Care</strong>Program. She currently serves on the Surveillance Work<strong>in</strong>g Group of the CanadianStrategy on <strong>Palliative</strong> and End-of-Life <strong>Care</strong> and is active with<strong>in</strong> several national<strong>in</strong>itiatives contribut<strong>in</strong>g to advancement of HPC <strong>in</strong> Canada.Darlene Grantham RN MN CHPCN(c)Cl<strong>in</strong>ical Nurse Specialist<strong>Palliative</strong> <strong>Care</strong> ProgramW<strong>in</strong>nipeg, MBEmail: grantham@mb.sympatico.caDarlene Grantham is a Cl<strong>in</strong>ical Nurse Specialist (CNS) with the W<strong>in</strong>nipeg RegionalHealth Authority (WRHA)’s, Regional <strong>Palliative</strong> <strong>Care</strong> Sub-Program. Ms. Granthamcurrently serves as Chair of the Nurses Interest Group of the Canadian <strong>Hospice</strong><strong>Palliative</strong> <strong>Care</strong> Association (CHPCA).Elizabeth Hill RN<strong>Palliative</strong> <strong>Care</strong> Coord<strong>in</strong>ator andChemotherapy NurseMeadow Lake, SKelizabeth.h@pnrha.caElizabeth Hill is an experienced chemotherapy nurse and rural palliative care coord<strong>in</strong>atorfor Prairie North Health Region (PNHR), based <strong>in</strong> Meadow Lake,Saskatchewan. Ms. Hill has been a contributor to Pallium Project activities and servedas a key <strong>in</strong>formant to the Project’s primary-care palliative care professional competencyidentification process.Marie-Josée Paqu<strong>in</strong> RN MScProv<strong>in</strong>cial Coord<strong>in</strong>ator, <strong>Hospice</strong> <strong>Palliative</strong><strong>Care</strong> Network & Project Manager,Medical Affairs and Community OncologyCalgary, ABmariejos@cancerboard.ab.caMarie-Josée Paqu<strong>in</strong> currently serves as prov<strong>in</strong>cial coord<strong>in</strong>ator for the Alberta CancerBoard (ACB) <strong>Hospice</strong> <strong>Palliative</strong> <strong>Care</strong> Network (HPCN). The primary goal of thisprov<strong>in</strong>cial network is to facilitate access to hospice palliative care for cancer patientsthrough collaborative leadership <strong>in</strong>itiatives with stakeholders. HPCN is a program ofthe ACB’s Medical Affairs and Community Oncology division.Jacquie Peden RN MNNurse ConsultantIndependent PracticeEdmonton, ABprasada@telus.netJacquie Peden is an advanced practice nurse <strong>in</strong> <strong>in</strong>dependent practice with a specializedpractice <strong>in</strong> hospice palliative care (HPC). She has facilitated development of <strong>in</strong>tegratedprograms and is an extensive contributor to HPC education programs, <strong>in</strong>clud<strong>in</strong>gcontributions as a co-author of A <strong>Care</strong>giver’s Guide, and 99 Common Questions (andMore) about <strong>Palliative</strong> Nurs<strong>in</strong>g. Ms. Peden was contributor to the HPC nurs<strong>in</strong>gstandards development which helped <strong>in</strong>form the Canadian Nurses’ Association (CNA)specialty certification <strong>in</strong> <strong>Hospice</strong> <strong>Palliative</strong> <strong>Care</strong> (HPC) nurs<strong>in</strong>g.Daphne Powell RN BScNNurse Coord<strong>in</strong>ator, <strong>Palliative</strong> <strong>Care</strong>Saskatoon, SKdaphne.powell@saskatoonhealthregion.caDaphne Powell is an experienced nurse educator who is nurse coord<strong>in</strong>ator of SaskatoonHealth Region’s, tertiary palliative care unit at St. Paul’s Hospital <strong>in</strong> Saskatoon,Saskatchewan. Ms. Powell is an experienced facilitator <strong>in</strong> the Pallium Project peer<strong>in</strong>structorpool and serves on the Pallium Project (Phase II) Steer<strong>in</strong>g Committee forthe prov<strong>in</strong>ce of Saskatchewan.Carolyn Tayler RN BN MSA CON (C)Director, Plann<strong>in</strong>g and Systems DevelopmentEnd of Life <strong>Care</strong>Surrey, BCcarolyn.tayler@fraserhealth.caCarolyn Tayler is Director of Plann<strong>in</strong>g and Systems Development of End-of-Life <strong>Care</strong>for Fraser Health Authority. She is President of the British Columbia <strong>Hospice</strong> <strong>Palliative</strong><strong>Care</strong> Association (BCHPCA) and has provided leadership <strong>in</strong> program <strong>in</strong>novation <strong>in</strong>advanced care plann<strong>in</strong>g, tele-nurs<strong>in</strong>g and other HPC service delivery <strong>in</strong>novations forlarge geographic regional health authorities.Page 13<strong>Perspectives</strong> on <strong>Hospice</strong> <strong>Palliative</strong> <strong>Care</strong>: Nurs<strong>in</strong>g


About this MonographRecommended citation: Pallium Project(2005). <strong>Perspectives</strong> <strong>in</strong> hospice palliativecare: Nurs<strong>in</strong>g. Edmonton, Canada: ThePallium Project.Special thanks is extended to the staff andclients of the Grace <strong>Hospice</strong>, W<strong>in</strong>nipeg,for use of photos <strong>in</strong> this document. Otherphotos courtesy of the Pallium Projectphoto bank.Design, Layout, Copy EditLu Ziola, BA, Jerome Mart<strong>in</strong>, PhDsome production!www.someproduction.caProject Consultant and EditorJacquie Peden, RN MNProduction Coord<strong>in</strong>ationSharman Hnatiuk, BAConcept and Oversight forthe Pallium ProjectMichael Aherne, M.Ed., CMCThe Pallium Project is a strategic<strong>in</strong>itiative focused on facilitat<strong>in</strong>gimproved access, enhanced qualityand additional capacity for hospicepalliative care (HPC) with<strong>in</strong>Canada’s primary health care renewalframework. The Project is based on theidea that many hands make light work.The Project functions as a Communityof Practice (CoP). Communities ofPractice are self-organized, deliberatecollaborations of people who sharecommon practices, <strong>in</strong>terests and aimsand want to advance their specificdoma<strong>in</strong> of knowledge.As a CoP, the Pallium Project l<strong>in</strong>ksa range of teach<strong>in</strong>g-learn<strong>in</strong>g, serviceand policy development, knowledgemanagement, change managementand related collaborative <strong>in</strong>itiativesto tangible short- and medium-termresults which are essential build<strong>in</strong>gblocks for longer-term susta<strong>in</strong>ability <strong>in</strong>car<strong>in</strong>g for those with life-threaten<strong>in</strong>gand life-limit<strong>in</strong>g illness. Collaboratorsare committed to build<strong>in</strong>g on thevision of Quality End-of-Life <strong>Care</strong> forevery person <strong>in</strong> Canada - one whichassures comfort, dignity, peace ofm<strong>in</strong>d, reduces the burden of unduepa<strong>in</strong> and suffer<strong>in</strong>g, and supports thehealth status of all caregivers and thebereaved.Recogniz<strong>in</strong>g that registerednurses often serve <strong>in</strong>formal roles assources of health <strong>in</strong>formation andhealth system navigation for familyand friends, particularly <strong>in</strong> times ofcrisis that <strong>in</strong>volve life-threaten<strong>in</strong>gand life-limit<strong>in</strong>g illness, the PalliumProject commissioned a nurs<strong>in</strong>gcommunications <strong>in</strong>itiative <strong>in</strong> 2004.This <strong>in</strong>itiative sought to engageCanadian registered nurses who areauthority sources <strong>in</strong> <strong>Hospice</strong> <strong>Palliative</strong><strong>Care</strong> (HPC) <strong>in</strong> a collaborative writ<strong>in</strong>gproject to <strong>in</strong>form a broad audience of theregistered nurs<strong>in</strong>g profession about thecurrent state of palliative and end-of-lifecare <strong>in</strong> Canada.The three articles which appear <strong>in</strong>this monograph have been published<strong>in</strong> several prov<strong>in</strong>cial registered nurs<strong>in</strong>gprofessional association magaz<strong>in</strong>es <strong>in</strong>Canada and are available to nurs<strong>in</strong>gprofessional association/regulatorycolleges on a licensed, royalty-freepublication basis for the purpose of<strong>in</strong>form<strong>in</strong>g members about <strong>Hospice</strong><strong>Palliative</strong> <strong>Care</strong>. If your association/regulatory college is <strong>in</strong>terested <strong>in</strong> repr<strong>in</strong>trights please contact the Pallium Projectat Pallium Project Development Office,Box 60639, University of Alberta RPO,Edmonton, Alberta, Canada, T6G-2S8, Attn: Nurs<strong>in</strong>g CommunicationsInitiative.This monograph has been madeavailable, <strong>in</strong> part, by a f<strong>in</strong>ancialcontribution from Health Canadathrough the Primary Health <strong>Care</strong>Transition Fund (PHCTF). The viewsexpressed here<strong>in</strong> do not necessarilyreflect the official of Health Canada orthe organizations, their employees andmedical staff work<strong>in</strong>g with<strong>in</strong> the PalliumProject Community of Practice.Permission is extended to accreditededucational <strong>in</strong>stitutions, health servicedelivery organizations (<strong>in</strong>clud<strong>in</strong>gvoluntary-sector hospice organizations),professional associations/regulatoryassociations to download, transmit andshare copies of this monograph for noncommercial,professional education and<strong>in</strong>formation purposes, provided thatthe orig<strong>in</strong>al source of this monograph isattributed <strong>in</strong> full.Page 14<strong>Perspectives</strong> on <strong>Hospice</strong> <strong>Palliative</strong> <strong>Care</strong>: Nurs<strong>in</strong>g

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