Guidelines for a Palliative Approach in Residential Aged Care

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functional status and quality of life. They also stated that the challenges faced by medical practitioners to fulfil individual needs and preferences, both organisational and practical, were not considered by any of the studies. Therefore, the gathering of additional data was recommended based upon large-scale multi-centre trials to clarify any perceived benefits from protein and energy supplements on mortality rates. Another systematic review examined the benefits of protein energy supplementation in adults (predominantly aged 70+), which included studies of oral supplementation, modification of food constituents to increase energy density, and studies of enteral feeding [197] (Level II). The reviewers concluded that weight and nutritional indices of adults might be improved by routine nutritional supplementation. However, no reduction in mortality was found for nutritional supplementation. The reviewers also noted that there remain uncertainties as to whether supplements routinely provided can improve outcomes, particularly over longer periods of time. Neither of the systematic reviews considered a palliative approach as a variable, so the results may not be transferable to the aged care population. Further research is required. Individuals with advanced dementia who have difficulty eating or swallowing are often given enteral feeding to prevent aspiration pneumonia, ulcers or malnutrition. [195] However, there is no evidence that tube feeding makes a resident with advanced dementia more comfortable, provides any benefit (including longer survival), or prevents aspiration pneumonia [195] (Level IV). Several studies have found that tube feeding is a risk factor for pneumonia and morbidity [195] (Level IV). Concern exists that enteral and parenteral nutrition therapies are too aggressive and, therefore, do not fit within the philosophy of a palliative approach [185,187,190,198,199] (Level IV; Level EO; Level QE; Level EO; Level EO). Tube feeding Continuing percutaneous endoscopic gastrostomy (PEG) feeding when death is imminent may actually cause discomfort due to the body’s limited capacity to tolerate such intake at this time [190,199] (Level QE; Level EO). If the resident has been receiving sustenance via a PEG tube then reviewing the benefits of this treatment should be discussed with the resident’s doctor [190] (Level QE). In making an informed decision about tube feeding, the resident’s best interest and preferences are the cornerstone. When residents cannot speak for themselves, it is best to gather as much information as possible from those who have known them best such as family members. This proxy approach to decision making does not ensure that the interests of the vulnerable resident are guaranteed, but it does reduce the likelihood that the values of one individual will dominate. Often the dilemma that families face concerns regarding when to discontinue PEG feeds once they have begun [187,199] (Level EO; Level EO). Having family members involved in the decision making process to pre-empt such concerns of the family members by recording what interventions they consider that the resident would prefer. Everyone involved in the decisionmaking process needs to be aware that withholding or withdrawing treatments is legally and ethically sound if the decision is to be based on fully informed consent. [185,188] Guidelines for a Palliative Approach in Residential Aged Care 91
To assist in such a discussion, a decision aid has been devised (see table below) that can be used for family members of residents that are cognitively impaired and for those residents who are cognitively intact and / or their family members [188] (Level EO). The aim of this aid is to help residents and their families decide whether to pursue tube feeding. There are three basic components: (1) information on options and outcomes; (2) steps to decision making that are based on the resident’s preferences, personal values and clinical situation; and (3) a documented treatment plan designed to put these steps into operation [188] (Level EO). Table 12: Tube feeding decision aid [188] Information to be provided to the resident and family should include: • Common causes of eating and swallowing problems in older persons: • Technical considerations regarding the placement and use of PEG tubes: • Principles of substitute / proxy decision making (if not already discussed): • The risks and benefits of tube feeding: • The option of supportive / comfort care (e.g. hand feeding; responsive to resident’s requests regarding the need for, or the refusal of, food and fluids); and • Some considerations regarding future discontinuation of PEG tube (e.g. when and how often will the need for the PEG tube be reviewed; who can request a review / discontinuation and is there a process for this). Steps to decision making should include: • Guiding the resident and their family through what they have learned about PEG tubes: • How to apply this knowledge to the resident’s preferences, 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; and • What is the resident’s / or his / her family’s overall thoughts about the decision? Non-pharmacological management Numerous nutritional benefits have been noted when frail residents have been involved in a simple exercise program such as walking; for example, enhanced appetite, improved protein intake, improved bowel function (decreased constipation), and a decreased likelihood of glucose intolerance [187] (Level EO). However, some caution should be observed, because the population that was studied was not receiving a palliative approach to their care. The use of more expensive programs, such as high-intensity or endurance (strength-building), with frail residents is not recommended, due to a lack of significant beneficial results for participants involved in studies of these programs [200] (Level II). 92 Guidelines for a Palliative Approach in Residential Aged Care
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Guidelines for a Palliative Approac
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NHMRC APPROVAL These guidelines wer
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4 ADVANCE CARE PLANNING 55 4.1 Impl
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16 MANAGEMENT’S ROLE IN IMPLEMENT
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17 Ann and Mr Wells’ family Helpi
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IMPORTANT NOTICE On 8 December 2005
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achieved for these guidelines from
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facets of a palliative approach are
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Additional levels of evidence The N
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Guidelines Ref No. Evidence level A
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Guidelines Ref No. Evidence Cachexi
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Guidelines Ref No. Evidence Anxiety
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Guidelines Ref No. Evidence 70. Und
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1.1.1 Aims The aims of the systemat
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Table 1: Search terms Terms Aborigi
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1.1.5 Exclusion Criteria Although t
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in the methodology that may invalid
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To ensure the reliability of the re
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1.2.2 Methodology When the first re
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1.4.2 Method When feedback was requ
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Several Working Party members conve
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or disagreed with each stakeholder
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All the feedback received was colla
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CHAPTER 2 A PALLIATIVE APPROACH A s
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• Profound weakness • Trouble s
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Page 74 and 75: CHAPTER 5 ADVANCED DEMENTIA Advance
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Page 78 and 79: 5.3.2 Acute illness One study found
Page 80: Vignette 5: Anna’s story Anna was
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Page 87 and 88: Table 8: Common myths about pain ma
Page 89 and 90: 6.2.4 Breakthrough pain The term
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Page 109 and 110: Guideline: Hydration 24. Recommenda
Page 111 and 112: 6.7 NAUSEA AND VOMITING Nausea is t
Page 113 and 114: • Do you have any problem control
Page 115 and 116: 6.9.1 Assessment A thorough oral as
Page 117 and 118: 6.10 SKIN INTEGRITY The major skin
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Page 121 and 122: Brocklehurst and colleagues (1999)
Page 123 and 124: medication treatment along with non
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Page 130 and 131: CHAPTER 7 PSYCHOLOGICAL SUPPORT A r
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Page 136 and 137: 7.2.2 Management Non-pharmacologica
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Page 148 and 149: CHAPTER 9 SOCIAL SUPPORT, INTIMACY
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Guideline: Social Support Social Su
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include lack of information about t
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CHAPTER 11 CULTURAL ISSUES Australi
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11.2 Assessment The best approach t
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CHAPTER 12 SPIRITUAL SUPPORT Dein a
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Vignette 13: Jack’s story Jack wa
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Guideline: Spiritual Support 68. A
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interpersonal and leadership skills
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CHAPTER 14 END-OF-LIFE (TERMINAL) C
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mood (61%), constipation (59%) and
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e relevant, and may even worsen sym
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Treatment involves changes in posit
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14.5 PREPARING FOR IMMINENT DEATH
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education of the aged care team and
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Table 21: Grief, loss and bereaveme
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• excessively avoiding tasks remi
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Vignette 18: Reflections When provi
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may have been able to contribute to
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CHAPTER 16 Management’s role in i
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REFERENCES 1. World Health Organiza
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31. Hanson, L. C., Danis, M. & Garr
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60. World Health Organization Quali
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89. McCarthy, M., Addington-Hall, J
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121. Saunders, C. M. (1998). Forewo
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150. Sindrup, S. H. & Jensen, T. S.
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177. Berry, E. M. & Marcus, E.-L. (
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208. Robinson, S. B. & Rosher, R. B
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237. Brocklehurst, J., Dickinson, E
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265. Barraclough, J. (1997). ABC of
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295. Brown, T. M. & Boyle, M. F. (2
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328. Kristjanson, L. J., Leis, A.,
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360. McGrath, P., Vun, M. & McLeod,
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392. Saunders, C. M. & Baines, M. J
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424. Rawlings, D. & Glynn, T. (2002
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Glossary acetaminophen Acetaminophe
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coordinator of volunteers coping A
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geropsychologist A geropsychologist
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opioids Opioid is a specific term u
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specialised palliative team A speci
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Ms Wendy Shiels Dr Jane Sims Dr Chr
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APPENDIX B The Australian Governmen
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APRAC GUIDELINES: EVIDENCE EVALUATI
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APRAC GUIDELINES: EVIDENCE EVALUATI
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APPENDIX F: Summary of the frequenc
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APPENDIX G: An example of how the g
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APPENDIX I: Resource list PALLIATIV
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Psychological Challenge Depression
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APPENDIX J: Examples of advance dir
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Schedule 1 MEDICAL POWER OF ATTORNE
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APPENDIX K An example of a Genogram
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INDEX Abbey Pain Scale 64, 71, 78 A
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evidence levels 5, 6, 20, 21, 22 ev
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andomized controlled trials 5, 21 R
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Palliative Care Australia PO Box 24
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Guidelines for a Palliative Approach in Residential Aged Care

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