Invited Commentary Advance care planning in aged care facilities It is acknowledged that the most intensive health-care intervention many people will receive occurs during the last six months of their lives, with the result that these people are literally ‘treated’ to death. In the era of evidence-based medicine, we must ask if this treatment results in greater comfort or some other measurably better outcome, on balance, during those final months, or does it make things worse? Most people would prefer to die in comfort, in their own home, not undergoing burdensome investigations and treatment . To be fair, the medical profession, for all its expertise and wisdom, is generally not good at prospectively identifying who is entering those final six months. For many chronic conditions, the episodic nature of exacerbations and partial recoveries leads to a cycle of near-misses, with families being told that death is, or could be, imminent, and then recovery leading to additional months, or even years, of life. It is not uncommon for people with chronic heart or lung disease to have volumes of medical records containing records of dozens of admissions. This can lead to a certain cynicism about advice of impending mortality. Tales of prolonged survival after being given a poor prognosis are inevitably the stuff of legends. Nevertheless, not offering patients the option of considering a palliative approach should be unacceptable. One of the terminal conditions, with 100% mortality, with which we grapple, is, of course, dementia. It is subject to acute exacerbations, often of aspiration pneumonia or dehydration, which may be the cause of recurrent, burdensome hospitalisations that are clearly of no benefit. Thus, a reduction in mortality has been demonstrated where end-stage dementia patients were encouraged to avoid hospitalisation for acute exacerbations, through their proxy decision makers engaging with advance care planning (ACP) . Adoption of such a palliative approach would seem to be inarguable, but a systematic review found that decisions concerned with palliative treatment for the person with advanced dementia are complicated by knowledge differences, lack of understanding of the disease trajectory of dementia, the unpredictable nature of dementia itself, and religious and socioeconomic issues . For some families, the word ‘palliative’ is unacceptable, and the discussion needs to focus on the key benefits of comfort care and the disadvantages of alternatives . We know that ACP can improve adherence to patients’ wishes when it is brokered by trained facilitators, using patient-centred discussions, involving family, correctly filing documentation and systematically educating doctors [5,6]. 202
This can improve satisfaction in patients and families and reduced stress, anxiety and depression in family members. There is still a need to increase opportunities for ACP in residential aged care facilities (RACFs) to improve end-of-life care. Systems are required to ensure that ACP processes are embedded rather than merely project driven. It is also necessary to ensure the end-of-life care is improved by the ACP, reflected by improved symptom control, and improved resident and relative’s satisfaction. An essential component of a screening program for ACP such as REACH out is to ensure that the person responsible is given sufficient information to make informed decisions and is supported to do this. Although most families do understand the simple verity of end-stage dementia, every clinician caring for sufferers will be aware of families in denial. The symptom of inability to recognise familiar things or family may be a particular source of conflict if this is the sole sign. Families are more likely to observe interaction or recognition of family and objects than health professionals and care staff who do not witness any recognition. Some families describe this as ‘knowing I am there’ or ‘they are talking with their eyes’. It is therefore very timely that a toolkit with a suite of symptoms be developed to assist RACF staff to identify residents in the end stage of dementia who would benefit from ACP . The toolkit identified 14% of low care and 53% of high care residents in the end stage of dementia, although there was no comparison to a gold standard. The authors are evaluating the tool in a randomised controlled trial (RCT), which will be critical evidence to inform wider use, although additional questions could be usefully answered, such as: • Is the REACH out a valid and reliable prognostic and measurement tool? • How does the REACH out compare to the FAST scale stage 7c? . • How does the REACH out screening approach compare to universal ACP, particularly in high level care given the prevalence of end-stage dementia, limited life expectancy of all residents, high acceptability and rare complications of ACP? . Australia has shown real leadership in ACP research and the REACH out toolkit and associated research are further evidence of this. The RCT results will be keenly awaited. Gideon A Caplan and Anne E Meller Post Acute Care Services; and Geriatric Medicine, Prince of Wales Hospital, Sydney, New South Wales, Australia Australasian Journal on Ageing, Vol 32 No 4 December 2013, 202–203 © 2013 ACOTA
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Caplan GA, Meller A, Cert G. Home care for dying people. Journal of the American Medical Directors Association 2010; 11: 7–8. Caplan GA, Meller A, Chan S, Squires B, Willett W. Advance care planning and hospital in the Nursing Home. Age and Ageing 2006; 35: 581–585. Hines S, McCrow J, Abbey J et al. The effectiveness and appropriateness of a palliative approach to care for people with advanced dementia: A systematic review. JBI Library of Systematic Reviews 2011; 9: 960– 1131. Meller AE, Caplan GA. Let someone else decide. Dementia 2009; 8: 391–405.
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Detering KM, Hancock AD, Reade MC et al. The impact of advance care planning on end of life care in elderly patients: Randomised controlled trial. BMJ (Clinical Research Ed.) 2010; 340: 1345–1353. Kirchoff KT, Hammes BJ, Kehl KA et al. Effect of a disease-specific advance care planning intervention on end-of-life care. Journal of the American Geriatrics Society 2012; 60: 946–950. Potter JM, Fernando R, Humpel N. Development and evaluation of the REACH (Recognise End of life And Care Holistically) out in dementia toolkit. Australasian Journal on Ageing 2013; DOI: 10.1111/ajag.12062 Reisberg B. Functional Assessment Staging (FAST). Psychopharmacology Bulletin 1988; 24: 653–659.