Note regarding: Shooting the Messenger: Unpalatable Truths of Hospice Care -

CHN - Editor's note

The Compassionate Healtcare Network (CHN) wishes to give a warm welcome to Dr Gerard Daly as Contributing Editor to CHN.  Dr Daly lives in the UK.  It is there his mother's death was hastened.  Lest anyone say here in North America  patients are safe under the care of Hospice, I say - Terri Schiavo.  Terri Schiavo's final years were spent in a Hospice and it is there she was murdered.  Her feeding tube was removed to bring about her slow and cruel death.  In 1992 I had to present a brief "Physician Assisted Death: Is It Right For Canada?" to the Senate in Ottawa Canada.  While there,  I had the profound privilege of meeting palliative care physician Dr John F Scott who has has been the Director of the University of Ottawa Institute of Palliative Care since its inception.  Dr Scott took me on a tour of his palliative care ward, of which he was most proud.  During a long discussion, he shared with me his grave concerns regarding the modern euthanasia movement. The following is similar to the notes I took what Dr Scott shared with me during our visit - wherein Scott opined:

Over the next decade I predict the term, palliative care, will be "hijacked" by the euthanasia lobby. The deception is spreading that a person can have "death with dignity" only by choosing death through active or passive euthanasia. Unless we issue a strong challenge, palliative care may soon become a euphemism or synonym for choosing death, thus making a mockery of its origin as the active alternative to euthanasia.  John F Scott Lamentation and Euthanasia

His article Lamentation and Euthanasia is a classic prophetic work penned in 1988. 

Throughout the years, CHN has received letters from a number of families whose beloved family member died under very suspicious circumstance in various hospitals - most often there was no way to prove foul play.   I was a Hospice volunteer for one year in 1989.   I believe death was hastened with two of my  *clients*    However, not having any medical training or connection to any physicians outside of my own GP,  I had no one who I felt confident to talk to about about my concerns over those deaths.  Dr Daly is giving the trumpet alert to listen - keep our eyes and ears open and where and when necessary, blow the whistle.

We dare not walk away from a truth that is facing us squarely in the eye just because the "truth" is "unpalatable." For one day we may be the patient that another may think we have a duty to die.

Cheryl Eckstein

* clients* -  All volunteers are to call the patients we were assigned "clients."

Shooting the Messenger:

Unpalatable Truths of Hospice Care

By Dr Gerard Daly, PhD
 

"A good image is everything, and hospices depend on an uncritical

and rose tinted image of the work they do."
 

This article argues that protecting the terminally ill , those near the end of life and therefore the most vulnerable to euthanasia, is central in any debate on the right to life, so that they should never be written off or ignored in the fight against unlawful killing by doctors. Some pro-life / anti-euthanasia organisations have been compromised either by their close links with hospices or have a blind spot whereby euthanasia practised by hospices is ignored. Dr Daly asks that unpalatable truths about hospices should be honestly accepted so that the universal principle of the right to life extends to all, and euthanasia is condemned wherever it is practised, however covertly.

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I never thought when I trusted the propaganda about hospices being caring places for the dying, that I would suffer the shocking experience which occurred after I admitted my mother to a hospice. I did not know that after admission that she would be administered unnecessary drugs and be dehydrated so that she would decline rapidly. I was shocked when my mother was sent home to me in a coma without any explanation.

At the time, in 2002, I did not know about the practice in hospices of “terminal sedation”. Terminal sedation is the deliberate administration of sedative drugs to deprive the patient of consciousness until death has occurred. While this is justified by some palliative care doctors on clinical grounds, such as control of pain and other symptoms, it is open to abuse and could be used for deliberately ending a patient's life. I also did not know about “anticipatory prescribing” which saw my mother written up for drugs irrespective of clinical need. I would rather my mother had a different experience of care until natural death, where her physical and spiritual needs were respected instead of violated.

 


Even on a basic level of care, it was distressing to see my mother, who was barely able to move, being forced to use a commode instead of being given a bed pan. The nurses complained that she was pressing the buzzer by her bed too often, even though they should have understood that my dying mother had a basic need of being made comfortable. My mother was so weak she needed help with adjusting her pillows or moving her legs. For a frail lady lying in bed most of the time, I thought the nurses would understand her needs as being part of hospice care. Instead, in the medical notes I read that the nurses wanted to discuss sedation with me. There was no clinical need for this, other than the convenience of the nurses. A sedated patient cannot make requests for help from a nurse, and therefore less attention is needed to be given by the nurses to their needs.


My mother was in the hospice for two weeks. For the first week, I was able to visit her at the hospice every day, and monitor her situation. I would take the time to feed her and offer her water or tea. I did not notice the hospice nurses provide such help. My mother was so frail that some help with feeding and drinking was needed. But the nurses either did not have the time or the interest in sitting with my mother and assisting her with eating or drinking. While I did not expect my mother to have much of an appetite, she enjoyed eating and drinking even small amounts, and meal times provided a social occasion for her. The propaganda of the hospice encouraged carers to be involved in the care of their relatives, but it became clear that nurses and doctors in practice resented the involvement of a relative. The staff resented consulting me on matters of my mother’s care, such as my insistence that my mother should not be sedated.

Problems became more serious after I developed chicken pox.  During the second week of her stay at the hospice, I was no longer able to visi her. I was off the scene, and she was moved into a private room, where she was kept until she was discharged. I understood that the hospice would want to protect other patients from a risk of chicken pox, but I urged the hospice to conduct a blood test to confirm that my mother had immunity. Time was of the essence, as my mother’s suffering increased with isolation as she loved company. Despite my urging a quick test, the hospice took a prolonged time, stating that they had to send the test to a laboratory. The hospice just did not want to listen to my mother's needs. The result came back a few days before she was discharged, but the hospice still kept my mother in isolation.

While in isolation, my mother declined rapidly. From being alert and in good spirits, she became increasingly drowsy, despondent, and actually was falling asleep on the telephone. It was such an abrupt decline, that I raised my concerns with the doctor. An experienced Consultant Geriatrician has written a report on my mother’s case which has stated that my mother was heavily and unnecessarily sedated during this period, particularly with a drug called Haloperidol. The hospice failed to monitor hydration. Haloperidol was given ostensibly to treat nausea, but it contained a sedative. My mother was given huge doses of this drug, and I am not surprised that she became increasingly drowsy. The week end before she died, my mother begged me to take her home. The decline was so abrupt that the hospice permitted me to visit her on some occasions a few days before her discharge. This was in such a contrast to the previous week, when the hospice had told me that she was well enough to return home.

 

I had become increasingly concerned that my mother was being maltreated by the hospice. A friend who had visited my mother one evening reported to me that she witnessed my mother being shouted at by an aggressive nurse, who was also abusive towards the visitor. The visitor had only asked for help as my mother was falling out of her chair. The visitor even made a written complaint about this incident to the hospice. She spoke of the terror and helplessness in my mother’s eyes. I had myself encountered some hostility from the same nurse. I was worried about how my mother was being treated while she was alone. But rather than reprimand the conduct of the nurse, the hospice informed my visitor and myself that they had spoken to all nurses of the need to be polite. But the conduct of this specific nurse was not dealt with.

I was concerned about my mother’s decline while in isolation and her heartfelt appeals to me to take her home meant that I tried my best to respect this wish. I hastily tried to make arrangements for her discharge. After just over a week in isolation, and without my being able to visit my mother, she was dead. She was sent home to me in a coma, without an explanation. She died six hours later.

I should state that the oversedation and dehydration are of most concern in my mother’s case, as this hastened her death. The neglect and maltreatment of her by some of the nurses, and the poor comfort care that she was given, did not help and contributed to my mother’s suffering.

 

But I cannot deny the truth of what happened in my mother’s case, even though it might be shocking and unpalatable to some others in the anti-euthanasia movement who hold up hospices as an alternative to euthanasia. Some might find it hard to accept the reality that hospices are not immune to the trends towards euthanasia for the vulnerable that affect the rest of the medical profession. But the evidence is accumulating that hospices are no longer caring for the dying until natural death, but instead are hastening the deaths of patients through euthanasia by neglect (such as dehydration) and such practices as “terminal sedation”, and heavy and unnecessary administration of painkilling and sedative drugs. To ignore or have a blind spot towards what is happening in our hospices will be to the detriment of the anti-euthanasia movement, for euthanasia should be condemned whether it is practised in hospitals or hospices.

The fact that patients in hospices might be terminally ill, should not excuse the fact that some patients are dying not because of their illness but because of treatments which intentionally or by neglect hasten their deaths and deprive them of the precious time that they have left. If this is excusable on the grounds that the terminally ill are going to die anyway, isn’t this the same subjective value judgment on the quality of somebody’s life which the anti-euthanasia movement rightly condemns doctors for making against the disabled or stroke victims?


Moreover, the definition of a terminal illness is usually of somebody who can be reasonably expected to die of their illness within 12 months. There is a distinction between the imminently dying, who might not benefit from hydration and nutrition, and the terminally ill who undoubtedly will benefit from such basic care. Unfortunately, hospices are increasingly justifying the withholding of hydration and nutrition from those who would benefit from them, while administering sedatives without clinical need, ostensibly to relieve anxiety, but which would have the effect of hastening death. Surely a diagnosis of a terminal illness and admission to a hospice should not be enough in itself to justify a regime of treatment which causes the premature death of a patient?
 

Yet some in the anti-euthanasia movement turn a blind eye to what is happening in our hospices, so that the plight of many vulnerable patients is ignored. How can this be? One explanation is that within the anti-euthanasia movement are individuals and organisations which have close links to hospices. While good practitioners in hospices, who truly wish to oppose euthanasia in all its forms, should be welcomed, it is important that anti euthanasia organisations do not become compromised by too close links to any health institution including hospices. This will limit their ability to speak out and to criticise, for fear of upsetting their colleagues or friends. One example of this, from my experience, is an organisation in Britain which I contacted about my mother’s case. They were very interested, and even informed me that they would like me to meet a lawyer who was sympathetic to their cause. A short while later, however, a senior person in that anti-euthanasia organisation told me that they will not take things further because a medical practitioner at the hospice I was complaining about had given lectures and helped them with their campaigns.

 


It is easy to see the benefits obtained by hospices from such close links with anti-euthanasia organisations. As charities, they depend on the public giving donations. They are happy to be seen as caring alternatives to euthanasia for the dying, even if the reality is different. A good image is everything, and hospices depend on an uncritical and rose tinted image of the work they do. They cannot tolerate criticism, and in my own experience the hospice has gone to great lengths not to honestly address the complaint I made against them, but instead they have sought to discredit and attack me as a person. It is not a comfortable position to be in if you make a complaint against a hospice and are unwilling to accept blatantly untrue reports which they have written after they investigate themselves and exonerate themselves from all wrongdoing. It is also unpleasant to find, as in my experience, that other health agencies charged with protecting patients, instead commission reports from doctors who have connections with the very hospice you are complaining against.

One of the reports on my mother’s case was written by a former employee of the hospice. He is also attached to a professional body where he is a colleague of the president of the hospice. Needless to say, the hospice was exonerated of all wrongdoing. It would have been surprising if such doctors had written anything less than complimentary of the hospice with whom they had professional connections. Such blatant conflicts of interest do not inspire confidence in the investigations and conclusions from health agencies whose task is to protect patients. Moreover, in Britain, where hospices are concerned, complaints about malpractice are often met with disbelief by the public and other medical professionals as well as some in the anti-euthanasia movement.


In America this is less so, especially after the Terri Schiavo case. It has not gone unnoticed that Terri was dehydrated and starved to death in a hospice, and she was put there, even though she was not terminally ill, by her husband. It has also been noted that Michael Schiavo’s attorney, George Felos, had links with the hospice. Did Terri have a dignified death? Were her spiritual needs catered for by the hospice? Was she even given basic care? The hospice were accomplices in the tragedy of what happened to Terri, even though Terri was not terminally ill. The fact that such tragic events took place in a hospice should be a wake up call to those who think that hospices would in no way be accomplices to acts of euthanasia. It should also be noted that hospices increasingly want to out reach to non-terminally ill patients – to the disabled, and stroke victims, and AIDS patients. If the anti-euthanasia movement ignores unpalatable truths about euthanasia in hospices, will not other vulnerable groups be at risk from the unfettered practice of euthanasia in institutions which appear to be beyond reproach? Was not Terri disabled and not dying? Yet for some reason she was admitted to a hospice.

If hospices are above all criticism, and a blind eye is turned to covert euthanasia, there is a risk that, like Terri, other groups of vulnerable people who are not dying will be increasingly accepted by hospices. There is a risk that vulnerable patients who are disabled or elderly, might be misdiagnosed as terminally ill and sent to hospices where they will not receive life sustaining treatment.


The fact is that hospices are not isolated and hermetically sealed from hospitals and their colleagues elsewhere in the medical profession. In fact, modern hospices are involved in close relationships with hospitals and other medical professionals, and there is some turnover in staff, with some doctors gaining experience in hospices and then in hospitals. Care of the dying is often a multi disciplinary and multi agency task. It is unrealistic to believe that hospices are unaffected by trends in bioethics which justify the practice of euthanasia by neglect of the elderly, terminally ill, the disabled, and other vulnerable groups whose quality of life is deemed by doctors to be poor.

 


One case which highlights the realities of palliative care as practised in modern hospices is the Leslie Burke case. Leslie Burke has cerebellar ataxia, a degenerative illness which eventually will deprive him of the power of speech but which will leave him in full possession of his mental faculties and awareness. One day he will not be able to communicate even his most basic needs, such as his wishes for food and water. He was concerned about the General Medical Council’s guidance to doctors, which permits the withholding by doctors of artificial nutrition and hydration on the basis of their perceptions of a patient’s best interest and quality of life. He wants to avoid a slow and agonising death through dehydration, in which his suffering will be increased because of his unimpaired mental powers. Leslie Burke does not want aggressive life prolonging treatment, but only life sustaining treatment of being provided food and water, and he wants a natural and dignified death.


In both the original legal action brought by Leslie Burke against the GMC and the appeal by the GMC against the decision of the judge which upheld Leslie Burke’s right to life sustaining treatment, the GMC were supported by a Professor of Palliative Care, at King’s College Hospital in London, Professor Irene Higginson. She is a former Director of Medicine at Dame Cicely Saunders’ St Christopher’s Hospice, and continues to have a close relationship with the hospice through the teaching and training of medical students in palliative care in partnership between King’s College Hospital and St Christopher’s Hospice. Although Leslie Burke and his supporters in the anti-euthanasia movement believe that the GMC guidelines are dangerous, and contravene the right to life, Professor Higginson has been an outspoken defender of those guidelines. Despite the fact that the GMC guidance to doctors affects those who are not dying, such as the elderly, the disabled and stroke victims, Professor Higginson wishes to retain the existing guidance. This gives considerable power to doctors in life and death decisions concerning their patients, irrespective of the wishes of those patients or whether they are dying. The Leslie Burke case provides a further example of the emerging conflict between the aims of the anti-euthanasia movement and modern hospice “care”.

Leslie Burke will need ANH to stay alive at some point, while his mental faculties will not be affected by his disease.  The lawyers for the doctors argue that it would be unreasonable and expensive for him to demand his wishes are respected for "life prolonging treatment", as all patients will want the same, and this will put doctors in a difficult position as they will be forced to do something against their clinical judgement!  But this argument is sly - Burke does not want "life prolonging treatment" but "life sustaining treatment", of food and water - he accepts he will one day die, as we all do, but he wants to die with dignity and not have a painful torturous death through dehydration and starvation.  Since when is food and water a complex and expensive medical decision of "life prolonging treatment", when without it all of us would die?"

It should also be understood that the terminally ill encompass a wide range of people with varying illnesses and prognoses and not just the imminently dying. In no case should a diagnosis of being terminally ill mean an exemption from the full protection of the law against being unlawfully killed, or neglected, or starved or dehydrated to death, so that the patient dies from treatments or neglect administered by a hospice rather than natural death. If it is wrong for doctors to make subjective judgments about a disabled person’s quality of life, surely it is also wrong for doctors to withhold hydration and nutrition from terminally ill patients who are not imminently dying so that they will die not from their illness but from dehydration and starvation. Surely it is wrong for doctors in hospices to routinely, and without clinical need, sedate terminally patients into unconsciousness, irrespective of the patient’s wishes. The principles of the sanctity of life and “do no harm” are universal, and it weakens the arguments of some anti-euthanasia organisations if they focus their attention on hospitals but ignore what is going on in hospices.


Dr Gerard Daly is a Contributing Editior for The Compassionate Healthcare Network (CHN);  Dr Daly is also a freelance writer and researcher.   mailto:gerardjd@hotmail.com

Shooting the Messenger: Unpalatable Truths of Hospice Care ©  Dr Gerard Daly, for CHN May 20, 2005
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Articles by Dr Daly


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