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Clinical and Ethical Issues in Palliative Care and Dementia – An Overview

European Neurological Review, 2010;5(2):29-33 DOI: http://doi.org/10.17925/ENR.2010.05.02.29

Abstract:

The prevalence of dementia across Europe and the world is increasing. People die with and from dementia and, as such, advanced dementia can be considered a terminal condition. This, alongside the realisation that care for people with dementia is deficient, has led to increasing interest in palliative care in dementia. Palliative care can be a rather broad term with different meanings, but nonetheless guidelines and expert opinions have been developed with the aim of improving overall care for people with dementia. Although at times the evidence on which these guidelines are based is somewhat sparse, they provide guidance in specific areas relevant to dementia. The main areas covered are pain, infection and fevers, artificial nutrition and hydration, resuscitation and psychological, social and spiritual needs. We shall consider the evidence on which guidance is based and then highlight a recent ethical framework developed to help thinking around the issues that arise in dementia care.
Keywords: Artificial nutrition and hydration, dementia, ethics, fever, infection, palliative care, pain, psychosocial approaches, resuscitation, spirituality
Disclosure: Emma L Teper has no conflicts of interest to declare. Julian C Hughes was an expert advisor for the National Institute for Health and Clinical Excellence–Social Care Institute for Excellence (NICE-SCIE) Clinical Guideline on Dementia and served on the working party of the Nuffield Council on Bioethics that produced the report Dementia: Ethical Issues.
Received: September 20, 2010 Accepted: November 08, 2010
Correspondence: Julian C Hughes, Ash Court, Psychiatry of Old Age Service, North Tyneside General Hospital, Rake Lane, North Shields, Tyne and Wear, NE29 8NH, UK. E: j.c.hughes@ncl.ac.uk

Since the prevalence of dementia is increasing as the population ages, estimates of the number of people with dementia are constantly being adjusted; the current estimate is that 7–8 million people in Europe have got dementia.1 In 2010, the number of people in the world affected by dementia is estimated to be 35.6 million.2 People die with and from dementia, which is well known to be under-reported on death certificates.3 Dementia may well be the third leading cause of death.4

In a recent study in Boston involving 323 nursing home residents with dementia, 54.8% died over an 18-month period.5 There is a known association between poor cognitive function and increased mortality.6 Similarly, increasing cognitive impairment and severity of dementia was associated with higher mortality in a cohort of older people admitted acutely to a hospital in the UK.7 The implication of such findings is that advanced dementia is a terminal condition; if this is the case, palliative care seems to be an appropriate response.8

With the increasing interest in palliative care in dementia,9–17 it is perhaps surprising that a systematic review found little evidence to support its efficacy in advanced dementia.18 However, this may reflect terminology and underlying conceptual issues.

The terminological difficulty is that there is a whole host of components involved in palliative care – such as withdrawing or withholding treatment, for instance – that may not show up in a search for ‘palliative care’ alone. This in turn reflects underlying conceptual difficulties, because ‘palliative care’ suggests everything from the palliative care approach, applicable to all chronic conditions from the time of diagnosis, to end-of-life care, where palliative care is understood to apply specifically to a person’s last few days.19 There are also practical difficulties: for example, it can be difficult to recognise when the person with dementia is actually entering the dying phase and prognostication remains tentative despite indicators such as general dependency, hip fractures and the need for artificial feeding proving useful.12 Nevertheless, the holism of palliative care does seem relevant to dementia, whether at the time of diagnosis, when advance care planning may be appropriate,20,21 or at the time of death, especially if this approach to care is located within the broader framework of supportive care.22,23

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Keywords: Artificial nutrition and hydration, dementia, ethics, fever, infection, palliative care, pain, psychosocial approaches, resuscitation, spirituality