Clinical and Ethical Issues in Palliative Care and Dementia – An Overview localities, mainly in the US.52–54 Thus, it may well be, as Volicer suggests, that the reasons for the use of ANH are not solely medical.31
Generally, guidelines are not in favour of artificial feeding in dementia.28,30,31,33,37,55
based on the review by Finucane and colleagues,56 supported by an ethical commentary supplied by Gillick.57
In large measure these recommendations are which was Abbey
recognises the ethical difficulties that surround decisions not to feed someone and presents the case for providing information to families to help them to decide on the basis of the evidence.29
The
recommendations are generally to manage dysphagia conservatively, using food thickeners with appropriate posture and feeding techniques. Volicer,31
who does not in general support the use of
feeding tubes, presents evidence suggesting that it is possible to change practice by engaging and educating staff to consider a variety of measures to reduce dysphagia as well as alternative feeding methods.56,58,59
Similarly, the National Council for Palliative Care (NCPC) in the UK does not recommend percutaneous endoscopic gastrostomy (PEG) tube feeding in advanced dementia on the grounds that it cannot be justified given its high mortality rates.36
Instead, the NCPC gives
guidance on how to encourage good oral nutrition. For example, careful hand feeding, maintaining good oral hygiene to reduce infections following aspiration and the use of modified food can all be helpful. The NCPC emphasises that one of the key benefits of hand feeding is the continued human contact that it ensures.
A recent Cochrane review supports these recommendations. In the available studies, which included no randomised controlled trials, they found no evidence that enteral tube feeding provided any benefit in terms of either physical or mental health. However, it was noted that there was also little good-quality evidence about the harm from artificial feeding for people with dementia.51
There have been some dissenting voices. For instance, Regnard and colleagues raised questions about the quality of the evidence that is recognised in current reviews,51,56
nutrition should be considered as a priority sooner in dementia.60
and made the sensible point that The
same point was previously made by an expert group reviewing the evidence, since poor nutrition potentially contributes to poorer quality of life as the disease progresses, but the group still decided in favour of careful oral feeding for as long as possible and the use of artificial feeding only in unusual cases.61
As with
antibiotic use and pain assessment, individuals should be judged according to their individual circumstances, which should be regarded holistically. In other words, in keeping with a palliative care approach, the person’s unique biological, psychological, social and spiritual circumstances must be carefully weighed up.
Resuscitation
In hospital, CPR is three times less likely to be successful in patients with dementia than in those who are cognitively intact.63
The probability of successful cardiopulmonary resuscitation (CPR) in an elderly person with dementia in an unwitnessed arrest in an institution is zero.62
Similarly, the NICE-SCIE guidance states that in severe dementia CPR is unlikely to be successful. The guidance suggests that there is a lack of proportion between the treatment and the likely outcome, and that therefore it should be regarded as an extraordinary treatment for which there is no moral imperative
EUROPEAN NEUROLOGICAL REVIEW
Nonetheless, despite the futility of the treatment, the decision to withhold CPR must often be discussed with relatives, especially in situations where resuscitation is the default position.28
to pursue.33
Psychological, Social and Spiritual Needs The need for more supportive care, and its current lack, is highlighted in several publications. For example, the Nuffield Council on Bioethics points out that people with dementia are unlikely to have attention paid to their spiritual needs,64 that spiritual needs are often ignored.36
and the NCPC notes NICE-SCIE recommends
considering the psychological, social and spiritual needs of the person with a non-curable illness;33
likewise, Alzheimer Europe notes
the need to be aware of the global concerns of people with dementia and accordingly recommends that spiritual counsellors are included in their care.30
Alzheimer’s Australia is more directive and regards spiritual care as “essential to comprehensive palliative care.”29
It is suggested that a
pastoral care worker with knowledge of these issues should be part of the multidisciplinary team.29
Sapp notes that providing spiritual
care to those who have lived within a religious tradition moves beyond the verbal to the symbolic, and those who cannot engage in conversation may still respond to music, familiar prayers, rituals and physical symbols.65
Other psychosocial aspects of care are not considered in any detail by the guidance, although the NICE-SCIE guidance considers non-pharmacological treatments such as massage and aromatherapy in the management of pain.33
The evidence for ‘alternative therapies’
is again somewhat sparse with, for example, only one study of aromatherapy considered to be of sufficient quality to be assessed in a Cochrane review.66 therapy is poor.67
these types of therapy,36 care programmes that incorporate them into institutional settings.68
Therefore, a carer’s assessment is recommended to help provide practical and psychological assistance to those supporting a person with dementia.33,36,55
Consideration is also given in the literature to support for carers. For example, it is acknowledged that carers may be elderly and frail and that there may be greater levels of psychological morbidity among carers.36
An additional concern in connection with
carers is that bereavement is not given the attention that it deserves in dementia. It is not straightforward, for it is recognised that many carers suffer ‘anticipatory’ and ‘disenfranchised’ grief as they see their loved ones fade away over the entire course of a prolonged illness.69
Carers are often considered to suffer from ‘carer burden’.
This moves us on to consider ethical issues, because much of this ‘burden’, which it should be said is sometimes experienced in a more positive light as providing a means for emotional or spiritual growth, reflects the day-to-day nature of the ethical issues that carers face. Thus, it has also been termed an ‘ethical burden’, suggesting that the right support will be that which acknowledges and assists with the moral nature of the difficulties faced by the family of the person with dementia and other close carers.70
An Ethical Framework Just over 10 years ago in both the US71
and Canada72 influential ethical guidelines were produced to help to shape the care given to people 31
Likewise, the quality of evidence for music However, anecdotal evidence lends support to and there is interest in developing supportive
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