Terminal care in
dementing illness
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Open Forum
Dermot Power discusses the need for palliative
care in patients with end-stage dementias
WHEN CICELEY SAUNDERS started St Christophers Hospice
in the 1960s, only two diseases were thought to be appropriate for hospice care – cancer and motor neuron disease.
The palliative care approach provides appropriate control of
symptoms, emphasises overall quality of life, takes a holistic approach, involves the patient and the family in
decisions, and fosters good supportive communication
between all concerned.
Since the 1960s, the hospice service has come to recognise the importance of good end-of-life care for patients with
other diseases. However, the majority of patients receiving
palliative care have cancerous illness, while at a community
level only 25% of deaths are attributable to cancer. A major
problem in this regard has been the difficulty in predicting
six-month prognosis for patients with non-cancer diagnoses.
The ‘death trajectory’ is much more predictable and uniform
for most patients with cancer. However, Alzheimer’s disease
(AD) has one of the least predictable dying trajectories in
terms of life expectancy. As a consequence in the United
States for example, Medicare will only support hospice care
for patients with AD in extreme circumstances. Specifically,
patients must be at a FAST 7 stage – virtually mute and
bedridden, before being considered for eligibility.
The failure of the medical community to accurately define
the death trajectory in dementing illnesses should not how-
ever, be used as an excuse to exclude Alzheimer’s patients
from palliative services. Up to 20% of patients with endstage dementia in a recent BMJ paper were found to have
symptoms which would benefit from palliative care services.
Indeed, a palliative care approach in dementia is favoured
by formal and informal carers when surveyed.
Early intervention
In the advanced stages of dementia, quality of life rather
than length of life should be prioritised. The Alzheimer’s
Society believes that early and ongoing involvement and
consultation with people with dementia and family members
is essential in order to achieve a good quality of life at all
stages of the person’s disease. Good practice in dementia
care depends on genuinely shared decision-making.
In the public arena, the palliative care needs of people
with dementia have received little attention to date. This
may be because people with dementia can be in the terminal stage of their illness for several years and are usually
cared for in residential institutions or by dedicated and
loving, but often stressed, relatives. In these circumstances
carers may not recognise that appropriate multidisciplinary
specialists trained in a palliative care philosophy may better
address some patient needs. In addition, there is a recognised although diminishing advocacy deficit for patients
with dementia.
FORUM May 2005 45
Forum
Open Forum
In the UK, the Alzheimer’s Society believes that it is inappropriate for a person with advanced dementia to be given
artificial hydration and nutrition for the sole purpose of prolonging life.
Treatment should be given to maximise the quality of life
and comfort of a person with dementia in line with the General Medical Council’s guidelines on withholding and
withdrawing life-prolonging treatment (2002).
The Society has serious concerns about the frequency with
which people in the terminal stages of dementia are artificially fed and hydrated. When people in the late stages of
dementia experience difficulty swallowing, most people
accept that this is part of the dying process and that the
most appropriate response is palliative care.
The goal of dementia care at this stage is, therefore, to
provide comfort and emotional well-being – not to prolong
life. The best way to alleviate the pain and distress of a
person in the final stages of dementia is through one-to-one
nursing. Sips of water moistening the person’s mouth provide a more appropriate and less invasive alternative to
artificial hydration.
Legislation
Mental capacity legislation would allow people to express
a wish about how they would like to be treated should they
lose capacity. This could include refusing certain treatments
such as artificial nutrition and hydration. It would not allow
the refusal of basic care. Legislation would also give better
legal protection to vulnerable adults on a range of issues,
including medical treatment.
Personally, I have some fears regarding the introduction of
such legislation as it may compel the treating physician to
undertake certain courses of action which although unpalatable to a healthy, vigorous adult, may be desirable when ill
and faced with stark choices. It should be remembered that
although earnest and sincere in their lyrical youthful comments, Roger Daltrey, Pete Townshend et al have probably
come to change their minds regarding their wish to ‘die
before I get old’!
The Law Commission here in Ireland has recently produced a discussion document outlining some radical
proposals to introduce ‘guardianship’ type protection for
vulnerable elders.
Although not a perfect solution, it is hoped the discussion
document could stimulate debate around these important
issues. Terminal care in dementing illness is a fraught and
currently neglected area of medical care and research. Given
the ageing profile of the population and the increasing incidence of dementia with increasing age, it is incumbent on
the medical and wider community to address this deficit and
ensure services are available and delivered where appropriate.
Dermot Power is a consultant geriatrician at the Mater and St
Mary’s Hospitals, Dublin