Book Review by Dr Gerard Daly
Challenging
Medical
Ethics
1
No
Water
- No
Life:
Hydration
in the Dying
Compiled and edited by Dr Gillian Craig
In the present
context of the widespread practice of withholding hydration from the dying, none
of us can ignore the dangers this has for any of our elderly terminally ill
loved ones. Most of us will only discover the reality behind the airbrushed
image of hospice care when it is too late, after our loved one’s have been
admitted and are placed, often without the knowledge or consent of the patient,
family or guardian, on a regime of sedation without any attention to hydration.
I discovered that the average time spent by a patient in a hospice before death
was around two weeks. It can take this long for somebody to die a painful death
by dehydration. The correlation is uncanny.
The deliberate withholding of hydration with the intention of hastening death is
illegal in most countries. But in practice the medical profession and the police
often turn a blind eye to what is happening. Into this cosy relationship between
palliative carers and watchdogs who fail to hold practitioners to account comes
Dr Gillian Craig with her seminal book highlighting the dangers of sedation
without hydration.
Dr Craig, a retired Consultant Geriatrician from Northampton, England, has
spoken out courageously against the premature withholding of hydration in the
dying. In doing so she has taken on the might of the leadership of the hospice
movement and a significant proportion of palliative carers, who believe that
terminal sedation, or “palliative sedation” is good medical practice. Dr Craig’s
message has proved to be unwelcome to well intentioned people who are naïve
concerning the reality of modern hospice practices.
It is now recognized that palliative sedation should only be used when
“everything else does not work.” And even then great care must be taken to
ensure that the intention of the doctors is to relieve severe symptoms and not
to shorten life, otherwise the practice cannot be distinguished from euthanasia.
(see Lo and Rubenfield writing in JAMA in October 2005).
No Water-No Life is the first in a series of books compiled by Dr Craig to
challenge modern medical ethics that have departed from the Hippocratic oath and
basic Christian principles of the sanctity of life, in favour of subjective
end-of-life decisions based on “quality of life”. The book presents a history of
the debate that Dr Craig launched in the Journal of Medical Ethics in 1994. The
book documents Dr Craig’s efforts to have a fair and honest debate about the use
of sedation without hydration – a debate that was started with the intention of
changing medical practice. The book is focused mainly on developments in the
United Kingdom, but it also includes responses from medical professionals in
North America and other countries around the world. An American and Canadian
reader would find that the book provides an insight into attitudes to these
issues by palliative carers from these countries. Indeed, Dr Craig shows that
leading palliative care specialists in North America have pioneered the use of
subcutaneous fluids in terminally ill patients. Dr Craig states that “Fainsinger
and colleagues on the palliative care unit in Edmonton Alberta, now offer
subcutaneous fluids to all their patients who are dehydrated or likely to become
so, because dehydration can cause unpleasant symptoms. They find that about two
thirds of their patients, especially those who deteriorate slowly, need
subcutaneous fluids; and they are given for 14 days on average.” (page 93).
Articles published by Dr Craig in professional journals are reproduced in this
volume as well as entire articles written by her opponents, thus providing the
reader with a balanced and full appraisal of how her concerns were met by fellow
medical practitioners. But it is not a dry academic history of “I said this and
they said that”. Dr Craig’s articles and comments and the response of her
adversaries make fascinating reading, and provide an insight into stonewalling
she has received from hospices and palliative carers who demonstrate at best a
luke warmness to her ideas and at worst their closed minds and institutional
self interest on this issue, at the expense of honest debate and improved care.
While Dr Craig was encouraged by the response of some respected palliative
carers who shared her concern about the importance of hydration, it is quite
apparent from the book that she has had a mountain to climb in achieving a wider
acceptance of her concerns among practitioners in the hospice movement and
leading palliative carers. The high point of success was guidelines on the
ethical use of artificial hydration prepared by the National Council for Hospice
and Specialist Palliative Care Services (NCHSPCS), which at least paid lip
service to the notion that there should not be sedation without considering
hydration in those who are not imminently dying (p169). The weakness is that
these were only guidelines and were not enforceable, and had no sanctions
against transgressors. Moreover, as the NCHSPCS is composed of leading
practitioners in hospices and palliative care services, the commitment to these
guidelines in practice is questionable given the continued inattention to
hydration in some leading hospices.
The book is written in an accessible style that makes it easy to read and is of
benefit to all readers, lay persons and medical practitioners. It contains some
case histories and also some illustrative tables and graphs which aid the reader
immensely, especially in the discussion of symptoms of dehydration.
The Spurious Defence of “Double effect”
The book also includes discussion of the moral issues concerning withholding
hydration from the dying, and lampoons the argument often put up by
practitioners of euthanasia by which they hide behind the doctrine of “double
effect”. This legitimate principle has been abused by some hospices and
palliative carers to justify the intentional hastening of death by withholding
artificial nutrition and hydration from patients who are not imminently dying
and would benefit from such life sustaining care. The principle of double effect
would justify the administration of pain killing drugs to a dying patient even
if the unintended effect of this treatment might be to hasten death, providing
that the main objective is to relieve severe pain. Dr Craig is correct when she
states that “It is not sufficient to say vaguely that you are removing a burden
or that treatment is not benefiting the patient. If the intention or purpose (be
it primary or secondary) of withholding hydration is to shorten life, the doctor
should be culpable in law, unless there is a valid justification for inaction.”
(page 151).
The impact on carers
However, it is the effect on carers of the distress of watching their loved ones
die of dehydration, while being powerless to intervene and stop what is
happening, which provides a most poignant and important argument in the book. Dr
Craig describes the painful reality for many relatives and friends when patients
are being dehydrated to death before their eyes and they find themselves
powerless to intervene. Relatives may be treated insensitively and there is a
need for doctors to listen to the concerns of informed relatives. Some relatives
may have misgivings concerning the rapid decline of their loved ones after
entering a hospice and their sudden death but may not make a complaint or state
their concerns to the hospice. However, those who state their concerns about the
treatment of their loved ones may be treated in an insensitive and hostile
manner. Their concerns may be ignored and overridden as doctors invoke the
doctrine of “best interest” to justify sedation and the withholding of
hydration. Although hospices may have policies concerning the involvement of
relatives in the care of their loved ones, in reality hospice staff do not
welcome having their treatment plans questioned by carers.
Dr Craig believes that the experience of watching a loved one die by dehydration
can have a serious effect on the health of concerned relatives. She states that
“My opinion that the symptoms experienced by some relatives amounted to PTSD
[Post Traumatic Stress Disorder] is based on personal insight, empathy,
conversations and correspondence with the people concerned.” (Page 81). Dr Craig
continues: “However, setting formal categorisation aside, the important point
for people to grasp is that the experience of seeing a loved one die of
starvation or dehydration before your eyes, when medical staff refuse to
intervene is absolutely devastating. It can destroy lives by causing long term
psychological damage and distress. It is totally unacceptable that relatives
should suffer in this way at the hands of the medical profession.” (Page 81).
No Water-No Life is essential reading for all opponents of euthanasia
Dr Craig’s book provides an invaluable guide to the debate
about the need for artificial hydration in the dying. It is a path-breaking
book, as it clear that Dr Craig has led the debate in discussing matters which
the palliative care establishment would rather keep behind closed doors. Dr
Craig wanted an honest and open discussion in the medical profession of the
dangers of sedation without hydration in terminally ill patients, but the book
documents how frustrating and difficult it has been. The hospice and palliative
care establishment in Britain has displayed a Stalinist intolerance towards any
notion of an honest and open debate on these issues, as they seek to maintain
that sedation and withholding artificial hydration is good practice. The agenda
of hastening death is therefore widespread, imposed through teaching hospices,
hospitals and professional bodies. Little open dissent is tolerated within the
medical profession.
Some palliative carers insist that thirst can be prevented if the patient’s lips
and mouth are kept moist, but the evidence is unconvincing. Dr Craig’s book
provides convincing evidence that sedation without hydration will hasten death
and cause considerable discomfort to the dying. All of us have an interest in
the implications of what Dr Craig has discussed in her book. This book will help
relatives to speak out and discuss these issues openly with the healthcare team.
It will challenge readers and will inform them about disturbing trends in
hospice and palliative care, trends that the leaders and policy makers in the
medical profession would prefer were kept out of public view. The more the
public know about these issues, the more the hospice and palliative care
establishment will be forced to justify their practices and will be held
accountable. In this way, the hospice movement and palliative care can be helped
to return to its original purpose of providing care and dignity to the dying
until natural death.
Dr Gerard Daly is Contributing
Editor to the Compassionate Healthcare Network (CHN)
Challenging Medical Ethics 1 No Water- No Life: Hydration in the Dying
Compiled and edited by Dr Gillian Craig
Published by Fairway Folio, 2005
ISBN 0 9545445 3 6
No Water-No Life" is currently on sale
direct from the distributor for £15 per copy. For orders and enquiries
please write to PO Box 341 Enterprise House, NORTHAMPTON NN3 2WZ (UK).
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please. For post and packing please add £2 per volume in the UK, £3.50 for
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Ethics Books
Dr Gerard Daly is Contributing
Editor to the Compassionate Healthcare Network (CHN)
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