Thursday, 4 April 2013

Liverpool Care Pathway - "No Water - No Life"

This review by Dr. Gerard Daly may be read at Compassionate Healthcare Network

Dr. Gillian Craig's book is a must read.

  • Book Review by DGerard Daly

Challenging Medical Ethics 1 NWater - NLife: 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

  • 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). Payment in sterling by cheque or International Banker's Order with the order please. For post and packing please add £2 per volume in the UK, £3.50 for Europe or £5.50 per volume overseas. Cheques should be made out to Medical Ethics Books

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