A good death
BMJ 2000; 320 doi: https://doi.org/10.1136/bmj.320.7228.129 (Published 15 January 2000) Cite this as: BMJ 2000;320:129
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Richard Smith states in his editorial, " there is a suspicion that
for the majority who die in acute hospitals or nursing homes the
experience is bad." He refers to anecdotal evidence from newspapers and a
study that was carried out in 1983 by Mills et al.(1)
Similar stories abound in Australia even though we have well
developed Palliative Care services. However, palliative care is only
accessible to some terminally ill patients and usually only those who are
dying of cancer. The not "good dying" in hospitals still seems to be a
common experience in most western countries as indicated by a recent
bequest in Toronto, Canada.(2)
Research commissioned in 1991 by the South Australian Parliamentary
Select Committee on the Law and Practice Relating to Death and Dying (3)
found that the majority of respondents considered that public hospitals
were unsatisfactory in the provision of care for terminally ill patients.
The majority of respondents felt very excluded from medical decision
making and a third of the respondents often or always had problems with
communication and feedback from hospital specialists. This evidence,
which echoed Mills et al research, and other anecdotal evidence prompted a
group of researchers in South Australia to investigate the care of
terminally ill patients in the acute hospital setting.
A preliminary study was conducted in 1997 to observe the care given
to 10 terminally ill patients during their last 6 days of life in medical
wards within two acute care hospitals. The findings indicate that there
are several barriers to the provision of care when patients are dying in
this setting, such as strict adherence to routine and the lack of shared
and consistent terminology to inform those providing the care in the
hospital.(4)
This study has been followed by a larger study using a similar
methodology including interviews with staff involved in the caring. The
findings indicate that care of dying patients observed, ranged from
excellent to inadequate. The care was often undertaken by inexperienced
health professionals without the understanding of the philosophy of
palliative care or the skills required to provide this care. Dying
patients were routinely moved to 'side rooms' in very busy wards as staff
thought that this provided privacy and protected the other patients from
witnessing the dying. However, the observational data revealed that it
could be a very isolating experience for the patients and those who were
unresponsive were sometimes left for long periods without attention. The
presence or absence of family members influenced the amount of care
received by the patient as the care family members provided was included
in the data.(5)
The results of these two studies suggest that the principles of
palliative care are yet to be included in the culture of the acute
hospital setting. It is as though the hospital environment reflects the
hussle and bussle of everyday life in society which still denies the
naturalness and inevitability of death. There is no provision for an
"amicus mortis" in an acute care hospital if a family member is unable to
be present.(6) Many people die alone in the midst of all the busyness.
Where to from here? The questions go beyond the boundaries of
medicine and belong to the human race. Whilst the sanctity of life is
overridden so often by the culture of war, where wars and violence rob
humanity of lives daily and death is portrayed as a successful outcome, we
will continue to live with a paradox. Perhaps there are bigger questions
still to be asked about death and dying in society before the hospital
death is tended to with the humanity and compassion we desire. I for one
hope my last few days of life are not alone in a side room in an acute
hospital setting. But I welcome the debate both in the medical journals
and in all facets of society
References:
1. Mills M, Davies HTO, Macrae WA. Care of dying patients in
hospital. BMJ 1994; 309: 583-586.
2. News release Department of Public Affairs University of Toronto
1999 (2nd February).
3. Report prepared for the South Australian Parliamentary Select
Committee on the Law and Practice Relating to Death and Dying, November
1991.
4. Pincombe J, Brown M, Thorne D, Ballantyne A, McCutcheon H. Care of
dying patients in the acute hospital: An exploratory study. 2000 Progress
in Palliative Care (in press).
5. Pincombe J, Brown M, Ballantyne A, Thorne D, McCutcheon H Care of
dying patients in the acute hospital setting. 2000 Report to the NHMRC.
University of South Australia.
6. Grogono J. Sharing control in death, find an "amicus mortis". BMJ
2000 320: Letter (20th January).
Competing interests: No competing interests
Whatever happened to the trust the public had in the general
practitioner to have life under control, pain under control
and the ability to maintain the flicker of life in comfort
and more often than not, fan the flame so that each day has
some pleasure and enjoyment. I write not becuase some
mad-Shipman has rocked the boat of the medical profession
but because your leading article (BMJ: 320. 129-30 January
15th 2000) which could be considered unfortunately timely,
gives an emphasis on death which can only be described as
"unhealthy".
There are so very many positive aspects of medicine as the
new century begins: research which will bring benefits to those suffering
from all manner of diseases. Of course, we shall all die before the
century turns but do we really
have to undergo all this preparation for it. It seems to me
that things have moved on since the philosophy of Epicurus
and Montaigne.
If you medical readers actually take your death principles
on board and have their patients so prepared I can only anticipate that
this will do the Pharmaceutical industry a power of good in the increased
sales of antidepressants and increase the workload of Psychiatrists
unnecessarily.
Sheila Barnfather
Wolverhampton
WV10 0NP
Competing interests: No competing interests
A good death
The state of research on dying:
It is true, as Richard Smith points out, that no-one can answer the
question:'what is the state of dying in Britain today?' (BMJ Editorial,
2000; 320:129-130 (1)). Unfortunately, the current fashion for
evaluative studies of health services, and the low priority given by
grant bodies to descriptive and needs-based research, means an
increasing ignorance about health, disease, dying and society, and
patients' and carers' unmet needs. NHS R&D grant bodies continually
reaffirm their position that they do not and will not fund ‘health needs
assessment’; descriptive research tends to be bundled together under that
label and generally rejected. It is argued that 'needs assessment'
should be funded internally by trusts and districts. It is unlikely
they are going to prioritise 'the experience of death'. The focus in
health service research is on the costs and outcome of treatment
for the living. The dying and their carers are sadly neglected.
Admittedly, surveys of terminal care, including bereavement,
have been conducted. But these (even the national study
conducted by myself), by the very nature of their design, are fairly
superficial; none even begin to provide an understanding of what the
death itself is like for the dying or bereaved person (2). And none can be
used to prepare carers to help those who are dying. Nor do existing
evaluations of the relatively scarce terminal care teams provide any
depth of understanding (these usually involve staff rating their own
success at pain relief of the dying patient, and so on - with much
potential for bias).
Richard Smith's list of 'Principles of a good death' are timely and
greatly welcomed. But more than this is required to 'empower' the dying
person and their carer, particularly if the death takes place at home
where professional help is not necessarily speedily available at times of
need (eg. increasing pain). It is unlikely that the public will want to
face up to the possibility of their own death, or that of a loved one in
advance of the impending event. They are unlikely to want to seek out
preparatory reading material on dying in advance - it is threatening and
negative. But by the time the death is imminent, it is probably too
late, amid the distress, to start searching for information about
preparation for the end stages. In the case of increasing cancer pain,
it is too late to independently discover the existence of, and suddenly
request, an often scarce patient-controlled syringe driver (for
diamorphine) if this has not been supplied. In the case of a pressure
sore it is too late to request a special cushion - when they take three
weeks for delivery and the patient may only have a week or two to live.
But information on how to help the dying person, on what equipment is
needed, and on how to cope in distressing situations is essential for a
'good death' and for a less traumatic aftermath for the bereaved. It is
too late to say 'Sorry' to the dead person if one gets the last
stages wrong.
Richard Smith suspects that the experience of dying in an acute
hospital is probably 'bad' (1). One implication is that this
preparation is unlikely to be provided in hospital settings. Where
people are fortunate enough to have access to a hospice they may be
given support, information and preparation. Where the dying person is
cared for at home, if they are very lucky, a terminal care support team,
together with Marie Curie nurses, and supported by a good Macmillan nurse,
may provide this. I suspect in a large number of home deaths, this does
not happen and the end stages are unnecessarily distressing. This is
inevitable when terminal care services are so patchily provided
throughout Britain, and the NHS relies on charity to provide the bulk
of them.
A personal view:
This is not a value free commentary. I speak as one who recently
cared (alone) for my 79 year old father, who died at home from stomach
cancer in a rural part of Eastern England. Although there was a remote
Macmillan nurse, whose role was to manage care 'but not visit', there
was no terminal care support team (just the GP and a district nurse) and
we were denied access to Marie Curie nurses on grounds of their
scarcity. The outcome was no access to a patient-controlled (as opposed
to nurse controlled) syringe driver for emergency pain control, and no
pressure area care (or equipment, eg. special cushions, mattress top)
and in practice there was no easy and quick access to a doctor or
nurse at times of need. When the doctor last visited us (four
days before the death occurred) he expressed his opinion to me
that 'it would not be long now'. When I asked what to expect, and what
to do to help my father, I was simply told (albeit in a kind and caring
manner) 'Everybody's different' and 'Just take each day as it comes'.
In the event, this advice, although well intended, led to avoidable
feelings of helplessness and distress in the face of my
father's increasing pain, incontinence and chain-stokes
breathing, and to feeling inadequately supported (a fact not helped by great difficulties getting through by telephone to the
emergency doctor and nurses). This is 'care for the dying at home' in the
face of a patchy infrastructure for terminal care in this country. Maybe
it is an isolated case – I suspect not, but, in any case, it is one bad
experience too many.
References
1. Smith R. A good death. Editorial. BMJ 2000; 320:129-130.
2. Bowling A, Cartwright A. Life after a death. A study of the
elderly widowed. London:Tavistock Publications, 1982.
Ann Bowling, BSc, MSc, PhD, HonMFPHM
Professor of health services research
University College London
4th floor, 222 Euston Road
London NW1 2DA
Competing interests: No competing interests
Last year my husband died. Thanks to the support of our general
practice and the local hospice, he died at home, peacefully, cared
for by those who loved him and listening to the music he loved.
This good death has helped his family as they learn to live without
him.
It is of the greatest importance that doctors and, indeed, other NHS
staff are so trained that they can help patients die well. Hopefully
they will also recognise their accomplishment when they have done
so.
M Anne Chamberlain
Charterhouse Professor of Rehabilitation Medicine
Research School of Medicine, University of Leeds,
36 Clarendon Road,
Leeds LS2 9NZ
Competing interests: No competing interests
Editor,
I very much welcome the main principles of the editorial "A good death" 1
but the article makes a reference that "Earlier Arab and Jewish doctors
had thought it blasphemous for doctors to attempt to interfere with
death." If the author is referring to Muslims, then it is useful to
mention that Arabs are only 20% of Muslims, and the rest are non-Arabic
speaking Muslims.
When the Qura'n speaks about death, it even mentions it before life itself
to signify its importance, "it is He (God) who has created death and
life that He may try you, which of you is best in conduct." 2.
Muslims were asked to interfere with death and try preventing it as much
as possible. "And if anyone gives life to another person (preventing
death), it is as if he had given life to all mankind" 3 and that is why
Muslims were advanced in medicine.
Muslims in the UK are the second largest religious group after Christians.
Muslim Doctors and Dentists Association is holding in Birmingham a one-day
conference on 'Medical Ethical Issues: An Islamic Perspective' on the 12th
February 2000. There will be four themes; care of the dying and
euthanasia, human genetics and cloning, organ transplant and donation, and
fertility and pregnancy issues.4
Mamoun Mobayed
Associate specialist in psychiatry
Muckamore Abbey Hospital, Antrim, BT41 4SH
President of Belfast Islamic Centre
1 Smith R. A good death. BMJ 2000; 320:129-130. (15 January.)
2 Qura'n, (67: 2)
3 Qura'n, (5: 32)
4 Muslim Doctors and Dentists Association, Office contact: M.
Haffiz, Tel: 0121-5449757
Competing interests: No competing interests
Dear Sir,
Your leader, A good death (15 January 2000), raises many timely
challenges to one of the late 20th century's greatest taboos - the
willingness to face our own mortality and the inevitability of death.
The King's Fund has become increasingly concerned, over the past five
years, with the quality of death achieved by people in the UK. As your
article implies, there appears to be plenty of evidence that what you are
dying of, where you die, and what your culture is, will have a great deal
of impact on the quality of your death. The King's Fund believes there is
a need to focus on the dying person - not their carers or the bereaved,
whose needs are different and, generally, better recognised. Aside from
issues of the clinical care of the dying, there is a need, in an
increasingly secular world, to respond to the underlying human need to
meet death in an "integrated" state, having made sense of one's life as
something more than a random series of events, to be psychologically
"whole".
As part of the Fund's programmes to mark the Millennium, we are about
to undertake the first ever survey of the psycho-social support available
to dying people in London, and of the social, judicial and cultural
context for death as we enter the new century. Later this year a series of
seminars and articles will open the issues to a wide audience. We intend
that the debate will extend beyond the health and care professionals, and
embrace the general public, whose views on this most universal of issues
are largely untapped.
In this way, we aim to answer the question at the heart of your
leader "what is the state of dying in Britain today?". The answers are of
profound importance to us all.
Yours truly,
Susan Elizabeth
Director of Grants
Competing interests: No competing interests
Dear Editor
I would take issue with the statement that we know little about the
experience of death or the state of dying in Britain today. My own work
with Ann Cartwright, Julia Addington Hall, and others over the years has
been devoted to answering precisely these questions. Some relevant
references are listed below, and we are not the only researchers in this
field, which has grown substantially over the last 30 years both in
America and in Britain. Even a fairly superficial examination of the
journal 'Palliative Medicine', for example, would reveal the existence of
a number of studies of the quality of dying in Britain today, in both
hospitals and hospices as well as other important settings
Secondly, while the listed 'Principles of a good death' seem to me to
be good ones, it is clear that the implied model for this kind of death is
that of the person with a terminal illness such as cancer. Deaths from
other kinds of conditions simply do not offer these kinds of opportunities
of prediction, control, and saying farewell. Not all deaths are
predictable, and not all dying people have the kinds of problems that
hospices traditionally address. Again, these facts are well documented
with research evidence (see the first two references in the list below,
for example).
Yours sincerely,
Clive Seale
Department of Sociology,
Goldsmiths College,
Lewisham Way,
London SE14
References
Seale C.F. (1991) A comparison of hospice and conventional care
Social Science and Medicine. 32,2:147-152
Seale.C.F. (1991) Death from cancer and death from other causes: the
relevance of the hospice approach Palliative Medicine. 5: 12-19.
Seale.C.F., Cartwright A. (1994) The year before death Avebury.
Seale C.F, Addington-Hall J. (1995) Euthanasia: the role of good care
Social Science and Medicine 40, 5, pp. 581-587.
Seale CF, Kelly M (1997) A comparison of hospice and hospital care
for people who die: views of surviving spouse. Palliative Medicine 11: 93-
100
Seale CF, Addington-Hall J, McCarthy M (1997) Awareness of dying:
prevalence, causes and consequences Social Science and Medicine 45, 3, 477
-484
Seale C.F. (1998) Constructing death: the sociology of dying and
bereavement Cambridge University Press
Competing interests: No competing interests
Editor,
People always have and always will die (1). Palliative care has now
come out of hospices and is accepted as a mainstream specialty; it is
influencing care across the NHS. In Wales a care pathway, developed from
the work of Ellershaw and colleagues (2), is being rolled out across the
whole region, throughout various care settings, including acute hospitals
and nursing homes.
The aim is to improve care of the dying patient through
implementation of agreed evidence-based clinical guidelines, facilitated
by the introduction of the care pathway. The Clinical Effectiveness
Support Unit and the National Assembly of Wales are supporting the process
and evaluation.
The pilot study in Bangor has demonstrated significant changes in
practice, with improved analgesic prescribing. The availability of
analgesics as required for pain control rose from 72% to 98% when the care
pathway was implemented. The Care Pathway hence anticipates potential
problems and empowers carers and nurses to give timely and effective
interventions.
The pathway ensures that the diagnosis of ‘dying’ is not attached
inappropriately, either too early or late. The relatives are informed of
anticipated events and retain choices and control.
We agree with many of the principles of a good death (3); indeed they
underpin the pathway. We do not prescribe a lingering death, but all must
be aware that the very precise moment of death is unpredictable and not in
our nor anyone else’s control.
Yours faithfully
Andrew Fowell
Macmillan Consultant in Palliative Medicine, Ysbyty Gwynedd, Bangor
Ilora Finlay
Professor or Palliative Medicine and Marie Curie Consultant, University of
Wales College of Medicine, Cardiff
1. Smith R. A good death . BMJ 2000;320:129-130 ( 15 January)
2. Ellershaw J, Foster A, Murphy D, et al. Developing an integrated
care pathway for the dying patient E J Palliative Care 1997; 4 (6): 210-
214
3. Debate of the Age Health and Care Study Group. The future of
health and care of older people: the best is yet to come. London: Age
Concern, 1999
Competing interests: No competing interests
Wishing for a happy ending to a good drama is not pessimism.
Certainly, optimism is not about making difficult subjects taboo and
pretending they do not exist; its about discussing what could be done. I
feel that this editorial is, in fact, the most optimistic piece I have
read in years.
The Bhagavad-gita, universally renowned as the jewel of India's
spiritual wisdom and definitive guide to the science of self realization
mentions, " As the embodied soul continuously passes, in this body, from
boyhood to youth to old age, the soul similarly passes through death. A
self-realized soul is not bewildered by such a change."
Of course, we are all dying to live - and in style. But that does not
call for bewilderment at the mention of death- that too in style.
Competing interests: No competing interests
Don't stop a dying person's drug unnecessarily
I much enjoyed the leader 'A Good Death'. It should be required
reading for lots of people in and out of the profession.
I was a doctor with The Parachute Regiment from 1942 till 1945. I saw
North Africa, Sicily, Italy, France and the Rhine. Many friends were
killed and the lingering were helped to as good a death as possible.
I well remember a dear friend who was the Major commanding HQ Company
of the 1st Canadian Parachute Regiment. We landed in Normandy together and
while establishing our position came under heavy fire. The worst was a
mortar searching us yard-by-yard - any soldier will know what I mean - it
got us. My problem was trivial, Murray's were near fatal. He was a very
serious officer and always worried to get things done. All the mess would
shout 'What's the Worry, Murray' when he arrived looking gloomy. When he
was trying to make us work faster on exercises we would say 'What's the
Hurry, Murray'. As he lay with ghastly wounds I smacked a heavy dose of
morphia intravenously, put my arm around his undamaged shoulders and said
'What's the Hurry, Murray'. He smiled as he died.
I soon learnt why Nelson said: "Kiss me Hardy".
Death is a fine and private thing. In those years I saw too many - of
my 40 men only 2 survived till 1945. Three died by what the Americans
called friendly fire (this of course was towards the end of the War when
they could see we would win without them - so they joined)
I would like to tell of the near bad death of baby Peter Finch who
lived for a good life.
Also of Courtney Gage (The greatest Doctor I knew - and I knew Lord
Moran, Arthur Porrit and Watson Jones) who died a good death with much
love.
I adored pussy cats since babyhood. In early 1944 I was in a bus with
the Brigadier and some 30 officers going to a briefing. A silly pussy ran
in front and was hit. The Brig. shouted: 'Go look, Doc'. Its back was
broken and it was mewing. I pulled out my handgun and shot it. When I got
back in the bus the Brig said: 'I wont come to see you with bad feet Doc'.
He then added after the lads had made comment 'But we need you in France'.
We all knew what he meant and I muttered a thank you Sir.
It was there I saw a very bad death. I was a prisoner in Rennes in
late June '44. One morning a German Army Doctor arrived and took me into
the town (I was hit by two stones thrown by local French during that short
walk) into a tiny prison cell where a man lay on straw palliase. The
light was poor, the stench appalling and the young man terminal. His legs
to mid thigh were black rubble. The doctor told me he had been beaten with
a rubber truncheon every day progressively from the feet up as he was a
known resistance fighter. He told me I could give morphia but he wasn't
allowed to. I touched the poor sod, who was conscious, and as I was in full
uniform stood back to attention and saluted. I then gave the lethal dose.
In 1970 I was invited - almost a 3 line whip - to 6 pm drinks with a
very good GP. He had spent 4 years as a POW after Dunkirk when he stayed
with his wounded. A man of many convictions which embodied his ethics as a
doctor. It was a funny party - all professional men including a catholic
GP and 3 magistrates. At 7 pm he called us to order and stated: 'I am now
going round to carry out the wishes of Mrs X (a lady we all knew). I will
say goodbye from you all as I inject her.' It was typical of Norman -
courageous and a challenge. The challenge was not taken up and we all went
to the funeral.
In contrast are most deaths I have seen in England recently. In the
Hospices very good but in the hospitals not wonderful. BUT the plea I
would make is against the deprivation of their drug to the obviously
dying. An alcoholic friend who drank almost a bottle or whisky a day was
dying of an unrelated condition and his loving family when he could no
longer walk gave him one small whisky a day for the 6 ghastly weeks it
took him to die. On many occasions I have seen heavy smokers deprived of
cigarettes for their last few weeks of life. I know no hard drug users but
I suspect many are also cut off terminally. PLEASE add to the basic laws
of a good death - No unnecessary stopping of their drug.
Dr D. Nelson
Passe Renard, 32290 Averon-Bergelle, France
Competing interests: No competing interests