Guidelines for a Palliative Approach in Residential Aged Care

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terminology for the Guidelines. Additionally, we wished to de-emphasise the notion that palliative care was about the last days of life by moving the chapter on end-of-life care to be one of the last chapters in the Guidelines. This was considered a more appropriate position and bereavement support naturally followed end-of-life care. Feedback Loop #6 — Reference Group The Guidelines (Revised Version #5) were forwarded to the Reference Group for their review. The Reference Group supported the latest changes and recommended some additional strengthening of some chapters. For example, the advance care plan chapter needed to include the differing state and territory legislation, and the dignity and quality of life chapter required a discussion on privacy. These changes were completed by the Working Party. Feedback Loop #7 — Call for public feedback Part of the NHMRC approval process was the requirement for a call for public comments via advertising in a national newspaper. In compliance with this requirement, an advertisement was placed in The Australian newspaper in November 2003, calling for submissions to be received by mid-December 2003. Twelve submissions were received by the closing date. These comments were logged on a database and the responses from the Working Party were also included to provide an audit trail to document how these submissions were handled. Submissions were received from various RACFs, ANHECA, Geriaction, Alzheimer’s Australia, Nurse Educators and state health organisations. These comments again resulted in some changes to the Guidelines and the latest version (#6) was forwarded to the Reference Group for their review. Feedback Loop #8 — Reference Group The Reference Group supported the latest changes and recommended that this latest version (#7) be posted on the Project’s website due to requests from the public to review the Guidelines. Feedback Loop #9 — Stakeholders The Guidelines were placed on the project’s website and an email was forwarded to all members of the NCISN and the Reference Group to notify them that the Guidelines (Revised Version #7) were available for them to download and provide feedback to the Working Party. Feedback was received from 58 stakeholders. Some organisations distributed the Guidelines to key personnel and provided them with a proforma on which to respond. These responses were collated by the organisation and then forwarded to the Working Party. It is worth noting that these organisations appear as only one respondent when in fact the actual number of people who have provided feedback is considerably higher than 58. Stakeholder Feedback Feedback that was received was supportive of the revisions that had taken place. Additional issues that were considered relevant for inclusion were complementary therapies, clearer distinction between depression, delirium and dementia, and more work on advanced dementia and the physical symptoms (of advanced dementia). Guidelines for a Palliative Approach in Residential Aged Care 33
All the feedback received was collated onto a spreadsheet, which was forwarded to the Working Party so they could consider the feedback and provide comment as to whether they agreed or disagreed with each stakeholder’s feedback. The Working Party’s recommendations were discussed with the Reference Group and then the Guidelines were again revised in accordance with the suggested changes and the evaluated evidence provided by the review working party. These comments resulted in minimal changes to the Guidelines and the latest version (#8) was forwarded to the Reference Group for their review. Feedback Loop #10 — Reference Group Based on the Reference Group’s feedback the Guidelines were refined and the penultimate version (#9) of the Guidelines was forwarded to the Reference Group for their final comments. The Guidelines were revised again where appropriate and the final version (#10) was forwarded to the Department so that the Guidelines could be technically edited prior to their launch. This last step completed component I. The above decision-making process was also applied to comments and suggestions from stakeholders and Reference Group members to ensure that their input was given the same attention as that of the Working Party. 1.5 GUIDELINE IMPLEMENTATION AND EVALUATION 1.5.1 Implementation and Dissemination of the Guidelines With overwhelming support and encouragement from stakeholders, the APRAC project team provided the Department of Health and Ageing with the Guidelines, a training framework and an implementation plan. Implementation The Department is now working with PCA, the Community Services and Health Industry Skills Council and the Queensland University of Technology to further the implementation of the Guidelines. PCA, in partnership with the Department, has developed a plan for national workshops for residential aged care facilities’ (RACF) staff regarding implementation of the Guidelines. Training modules have been developed by PCA that build upon the recommendations by the APRAC project team. These modules will be presented via workshops and support will be provided to RACF educators involved in providing in-house training for staff to facilitate a palliative approach for residents. The Community Services and Health Industry Skills Council (CSHISC) have worked with the aged care sector and have determined that a palliative approach in residential aged care should be incorporated in the Training Package for Aged Care Team Members (Certificate III in Community Services [Aged Care]). Queensland University of Technology have developed a Principles Paper for a Palliative Approach for Aged Care to be incorporated in the Undergraduate Nursing Curricula (available at http://www.hlth.qut.edu.au/nrs/publications). 34 Guidelines for a Palliative Approach in Residential Aged Care
Page 1 and 2: Guidelines for a Palliative Approac
Page 3 and 4: NHMRC APPROVAL These guidelines wer
Page 5 and 6: 4 ADVANCE CARE PLANNING 55 4.1 Impl
Page 7 and 8: 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: or disagreed with each stakeholder
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 61 and 62: or ageing progression (see Table 4)
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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provision and storage of drugs, whe
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successfully tested predominantly w
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The reasons for malnutrition in old
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The diets of residents should also
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To assist in such a discussion, a d
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appear until dehydration is far adv
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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
Page 200 and 201:
31. Hanson, L. C., Danis, M. & Garr
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60. World Health Organization Quali
Page 204 and 205:
89. McCarthy, M., Addington-Hall, J
Page 206 and 207:
121. Saunders, C. M. (1998). Forewo
Page 208 and 209:
150. Sindrup, S. H. & Jensen, T. S.
Page 210 and 211:
177. Berry, E. M. & Marcus, E.-L. (
Page 212 and 213:
208. Robinson, S. B. & Rosher, R. B
Page 214 and 215:
237. Brocklehurst, J., Dickinson, E
Page 216 and 217:
265. Barraclough, J. (1997). ABC of
Page 218 and 219:
295. Brown, T. M. & Boyle, M. F. (2
Page 220 and 221:
328. Kristjanson, L. J., Leis, A.,
Page 222 and 223:
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
Page 256 and 257:
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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