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I was recentlly asked to talk at the RCP (London) acute medicine conference on end of life care in acute hospitals.

Nicola Cooper from Norfolk gave an excellent talk in the same session on discharge planning.

I was excited and pleased that such a conference was airing these issues – in keeping with the NEJM article on morality in dementia1, perhaps a sign of changing times? I am worried however, that with all the current enthusiasm for advance care planning (ACP) and avoiding unwanted deaths in hospital, there is a risk of misinterpretation. There is a great deal of focus on advance care planning as a means to prevent unwanted, inappropriate hospitalisations, especially in care home residents. Whilst there is some evidence that ACP in care homes can reduce hospital usage, it should be remembered that the studies focused mainly on care planning – helping to elucidate individuals’ best interests when they no longer had capacity. It was only in a small proportion (<15%) that advance care planning was possible – those people who had capacity.

Advance care planning is a useful tool for opening discussions about future care in appropriate patients, at a time when they have capacity and in anticipation of an event that might occur when they have lost capacity. It is a complex process, and even when led by experts, few specific advance decisions to refuse treatment will actually inform care. Advance statements which cover generalities can be helpful, but are often too non-specific to direct care. Most importantly, it should be remembered that the majority of people do not want to document anything, although the discussion itself may be of intrinsic benefit2.

The worry is that not all health care professionals involved in advance care planning or care planning will appreciate the subtleties of the process. For example, I recently saw an ‘advanced care plan’ for an individual with severe dementia, stating that she was not to be hospitalised in the event of a fall, unless there was an obvious injury or fracture. What’s wrong with this? Firstly, it is not advance care planning (the individual did not have capacity), secondly it is not really a statement of best interests. It is a statement about what the staff caring for her thought was best for her, not what they thought she would have wanted. A subtle but crucial distinction; the former is paternalism, the latter seeks to inform best interests. In any event, the decision to admit following a fall should always be based on the specific circumstances, as it is well known that a fall could be a non-specific manifestation of an acute illness. Some one with capacity might refuse to have a hospital assessment if they felt it appropriate, but that is unusual. I have yet to meet anyone who drafts an advance care plan which states that they do not want an appropriate assessment of a fall.

Is this ageism by the back door?

Simon Conroy

References
1. Mitchell SL, Teno JM, Kiely DK, et al. The Clinical Course of Advanced Dementia. N Engl J Med 2009;361(16):1529-1538.
2. Conroy S, Fade P, Fraser A, et al. Advance care planning: concise evidence-based guidelines. In: Turner-Stokes L, editor. Concise Guidance to Good Practice series. London: RCP, 2009.

BGS Newsletter, November 2009
Issue 24 ISSN 1748-634000 24