Guidelines for a Palliative Approach in Residential Aged Care

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CHAPTER 3 DIGNITY AND QUALITY OF LIFE Promoting a person’s sense of dignity is central to a palliative approach, [56] and dignity and quality of life are inextricably linked in this approach. Several researchers have explored what people’s views on quality of life mean to them as their death approaches. Themes that have been identified include having adequate pain and symptom management, avoiding inappropriate prolongation of dying, relieving burdens, achieving a sense of control, and strengthening relationships with loved ones [14] (Level QE). 3.1 DIGNITY Researchers also highlight the difficulty in describing and evaluating the concept of ‘dying with dignity’. In one study, the authors note three important factors of dignity: the capacity to communicate, the ability to recognise friends and family members, and being continent [57] (Level IV). People may hold different views about what dignity means, and in the face of a progressive illness or the ageing process the meaning of dignity may change over time. It is also important to note that the aged care team’s perception of dignity may differ from the resident’s view. The best way to understand what dignity means for an individual resident is to ask each resident and their family what are the most important factors for him or her in regard to dying with dignity. The aged care team members who endeavour to respect the dignity of residents need to acknowledge the things that are considered important to the individual in enhancing and maintaining their dignity. Chochinov and colleagues (2002) [58] (Level III-3) have undertaken the most thorough empirical work in relation to understanding the concept of dignity in the context of a palliative approach. This research team identified a Dignity-Conserving Care Model for a palliative approach that is aimed at helping the individual to feel valued. The framework can be used to discuss end-of-life care when residents are able to make informed decisions and develop a sense of closure. Chochinov (2002) [59] (Level EO) argues that the notion of dignity may be influenced by the nature of the illness, as well as by culture and ethnicity. The framework his team has described is sufficiently broad to encompass these issues. Chochinov and colleagues (2002) [58] (Level III-3) also argue that the resident, family members and the aged care team may define dignity differently; they advise the aged care team to be alert to whose perspective of dignity is being considered. A review of the evidence suggests that in a practical setting the categories of dignity include illness/ageing-related issues, dignity-conserving strategies and a social dignity inventory [58] (Level III-3). Illness/ageing related concerns are those things that directly result from the illness Guidelines for a Palliative Approach in Residential Aged Care 47
or ageing progression (see Table 4). Dignity-conserving strategies are those influences related to the resident’s psychological and spiritual resources (see Table 5). Finally, the social dignity inventory includes those environmental influences that can affect dignity, such as privacy boundaries, social support, and concerns of being a burden (see Table 6) [58] (Level III-3). The following tables indicate the factors that contribute to undermining a resident’s dignity. Included are questions that can be asked to determine the resident’s concerns as well as therapeutic interventions to help promote their dignity. Table 5: A practical model of dignity-maintaining interventions regarding illness and ageing considerations Illness–ageing related factors Symptom distress: Physical distress Psychological distress Medical uncertainty Death anxiety Level of independence: Independence Cognitive acuity Functional capacity Dignity-related questions Is there anything we can do to make you more comfortable? How are you coping with what is happening to you? Is there anything more you would like to know about your illness/ ageing? Are there things about the later stages of your illness/ageing that you would like to discuss? Has your illness/ageing made you more dependent on others? Are you having any difficulty with your thinking? How much are you able to do for yourself? Therapeutic interventions Vigilance to symptom management Frequent assessment Application of comfort care Be supportive Empathic listening Referral to counselling Volunteer support Upon request, provide accurate, understandable information Involve residents in decision making, regarding both medical and personal issues. Treat delirium When possible, avoid sedating medication(s) Use orthotics, physiotherapy, and occupational therapy (This table was adapted from the work of Chochinov and colleagues) [58] 48 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
Page 9 and 10: 17 Ann and Mr Wells’ family Helpi
Page 12: IMPORTANT NOTICE On 8 December 2005
Page 15 and 16: achieved for these guidelines from
Page 17 and 18: facets of a palliative approach are
Page 19 and 20: Additional levels of evidence The N
Page 21 and 22: Guidelines Ref No. Evidence level A
Page 23 and 24: Guidelines Ref No. Evidence Cachexi
Page 25 and 26: Guidelines Ref No. Evidence Anxiety
Page 27 and 28: Guidelines Ref No. Evidence 70. Und
Page 29 and 30: 1.1.1 Aims The aims of the systemat
Page 31 and 32: Table 1: Search terms Terms Aborigi
Page 33 and 34: 1.1.5 Exclusion Criteria Although t
Page 35 and 36: in the methodology that may invalid
Page 37 and 38: To ensure the reliability of the re
Page 39 and 40: 1.2.2 Methodology When the first re
Page 41 and 42: 1.4.2 Method When feedback was requ
Page 43 and 44: Several Working Party members conve
Page 45 and 46: or disagreed with each stakeholder
Page 47 and 48: All the feedback received was colla
Page 50 and 51: CHAPTER 2 A PALLIATIVE APPROACH A s
Page 52 and 53: • Profound weakness • Trouble s
Page 54 and 55: • Has the resident had a recent d
Page 56 and 57: in the RACF rather than transferrin
Page 58: palliative care teams is more appro
Page 63 and 64: Table 7: A practical model of socia
Page 65 and 66: Vignette 2: Robert’s story Robert
Page 68 and 69: CHAPTER 4 ADVANCE CARE PLANNING Car
Page 70 and 71: efore discussing the advance care p
Page 72 and 73: • A change in their health status
Page 74 and 75: CHAPTER 5 ADVANCED DEMENTIA Advance
Page 76 and 77: A study was conducted to investigat
Page 78 and 79: 5.3.2 Acute illness One study found
Page 80: Vignette 5: Anna’s story Anna was
Page 83 and 84: (see Fainsinger, Miller and Bruera
Page 85 and 86: Dame Cicely Saunders first describe
Page 87 and 88: Table 8: Common myths about pain ma
Page 89 and 90: 6.2.4 Breakthrough pain The term
Page 91 and 92: Pain can lead to behavioural change
Page 93 and 94: Vignette 7: Mrs Harris’ story Mrs
Page 95 and 96: examined the addition of paracetamo
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Page 99 and 100: successfully tested predominantly w
Page 101 and 102: The reasons for malnutrition in old
Page 103 and 104: The diets of residents should also
Page 105 and 106: To assist in such a discussion, a d
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Guideline: Hydration 24. Recommenda
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6.7 NAUSEA AND VOMITING Nausea is t
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• Do you have any problem control
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6.9.1 Assessment A thorough oral as
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6.10 SKIN INTEGRITY The major skin
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Wounds can occur in residents for a
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Brocklehurst and colleagues (1999)
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medication treatment along with non
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• CAM therapies may be culturally
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word games, the present day, and fa
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CHAPTER 7 PSYCHOLOGICAL SUPPORT A r
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7.1.1 Death statements and depressi
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the factor structure of the CSDD. I
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7.2.2 Management Non-pharmacologica
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Table 17: Distinguishing delirium f
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is recognised that in many rural an
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important [305] (Level QE). Familie
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8.4 FAMILY INVOLVEMENT The role of
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CHAPTER 9 SOCIAL SUPPORT, INTIMACY
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Rather than denying the existence o
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9.2.2 Management Imaginative progra
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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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