We now have to defend the lives of any patients who cannot speak for themselves, who may only have been made helpless by in appropriate sedation. It is useful to remember how the practice of killing patients by removing tube feeding and hydration began: it started in 1993 with Tony Bland, who was in a so-called “persistent vegetative state” after the Hillsborough disaster. The slope has been very slippery.
The following record of ALERT’s conference after the Law Lords’ fatal Judgment makes vital reading.
CONTENTS
Foreword by Lord Ashbourne
Legal Implications of the Bland Judgment by Professor John Finnis, FBA, LLB, D.Phil
Morals and Ethics: understanding the difference and the need for balance by Professor Peter Millard, FRCP
Nurses in the Front Line by Miss Sarah Whitfield, SRN
Patients with severe brain damage: some surprises by Dr. Maureen Tudor
Futile or Fruitful? by Mrs. Lilian Sallery
Hippocratic Medicine: the ethic that protects the vulnerable by Dr. Peggy Norris, Chairman of ALERT
The substance of Professor Finnis’ talk appeared in The Law Quarterly Review, Vol. 109, in July 1993, and it is printed here with their permission. The speakers have abridged Professor Millard’s and Dr. Norris’ talks. Extracts from the discussion are included.
After the final Bland judgment, ALERT called a conference in which some of the many people affected – doctors, nurses and therapists, family carers and members of caring organisations – were invited to consider four questions. These were:
Does the provision
of food and water through a tube to helpless patients constitute “medical
treatment”, as the Law Lords decided in the case of Tony Bland?
“The distressing truth which must not be shirked is that the proposed conduct is not in the best interest of Anthony Bland, for he has no best interest of any kind,” wrote Lord Mustill in his Judgment. Is it ethical for doctors and nurses to take steps to end the lives of patients in the interests of society at large?
Can medical ethics
change along with changes in Government policy? Or could the time come when
“the ideas of those who hold political power would lead to the denial of the
fundamental values on which Medicine is based”? (War Crimes and Medicine, British Medical Association, 1947.)
“Doctors who for conscientious reasons would feel unable
to discontinue life support” (food and fluids) “can presumably, like those
who have a conscientious objection to abortion, abstain from involvement in such
work.” (Lord Goff of Chievely in his Judgment). How difficult would such
abstention be for doctors and for nurses? The
new law that follows from the Tony Bland judgment contains no Conscience clause.
Is fresh legislation needed?
Britain’s leading expert on jurisprudence, Professor John Finnis, FBA, LLB, D.Phil., speaking on the legal implications of the Judgment, said:
“In my view, Parliament ought now to enact a statute laying down that rule of law which has been a rule of law for many hundreds of years and which was substantially rejected without discussion of its own substance by the House of Lords in their judicial capacity: that those who have a duty to care for someone may never exercise it in a manner intended to bring about that person’s death."
Other expert speakers were Professor Peter Millard, FRCP, Eleanor Peel Professor of Geriatrics at St. George’s Hospital Tooting; Miss Sarah Whitfield SRN, Nurse Adviser to the Camden and Islington Health Authority; Dr. Maureen Tudor, former principal medical officer of the Royal Hospital and Home, Putney, the centre of excellence for rehabilitation after severe brain damage; and Mrs. Lilian Sallery, whose daughter was treated there. Each dealt with a different aspect of the agonising problems created by the change in the law. In discussion, others present spoke from close and sometimes harrowing personal experience.
In February 1994, following the case of Patient “S” in Bristol, a Practice Note was issued by the Official Solicitor giving instructions how to apply to the Family Division of the High Court for permission to end the lives of patients in “Persistent Vegetative State”, after one year of their disability. Many families of such patients feel that their lives are now under threat. In March 1994 Mr. Gary Waller’s “Withdrawal of Medical Treatment” Bill, intended to given them protection, received massive support in a ten-minute rule debate in the House of Commons, but had no time to complete all its stages.
The record of this conference provides disturbing first-hand information, which confirms the necessity to restore the protection of the law to all citizens, especially the most vulnerable. They and their families need both practical help, and the moral support of the whole community.
This one-day conference presented an opportunity for the implications of the judgment on Tony Bland to be discussed by experts. It is important that influential observers air these crucial ethical matters so that the Government and those in positions of authority in the National Health Service may know opinion in the country.
I commend it to all interested persons.
Ashbourne
IMPLICATIONS
OF THE BLAND JUDGMENT
Moses Room, House of Lords, 25th May 1993
Lord Ashbourne: Just to set the scene I just wanted to share a little snippet with you if I may. There’s a world of difference in terms of intention between deliberately shortening a life and choosing not to prolong the dying process unnecessarily. The former involves the intention of killing; the latter the intention of not prolonging the dying. The difference between them is morally important, and the two should not be confused.
I just give you that thought as a sort of backdrop for today.
The
Legal Implications of the Bland Judgment
Professor
John Finnis, FBA, LLB, D.Phil.
Lord Goff of Chievely’s speech in Airedale National Health Service Trust v. Bland mentions what he calls “the Rubicon which runs between on the one hand the care of the living patient, and on the other hand euthanasia – actively causing his death to avoid or end his suffering.”
Now as we know, in the view of all the nine judges who heard those proceedings in the Bland case in the Family Division in the Court of Appeal, and in the House of Lords, the declarations which they were asked to give, and they did give, in their view left the law safely to the north of the Rubicon; but in my view the judges were in fact willy-nilly, in midstream, wading south.
The predicament of the judges is very clearly expressed at the end of Lord Browne-Wilkinson’s speech when he says:
“The conclusion I have reached will appear to some to be almost irrational. How can it be lawful to allow a patient to die slowly though painlessly over a period of weeks from lack of food, but unlawful to produce his immediate death by a lethal injection, thereby saving his family from yet another ordeal?”
He goes on, “I find it difficult to find a moral answer to that question. But it is undoubtedly the law.” And Lord Mustill at the end of his judgment joins in that cri de coeur, and adds to it that the foundations of the courts’ unanimous decision are as he says “morally and intellectually misshapen”.
Now, in my respectful opinion there were foundations, which were morally and legally better which were readily available but which seem never to have been argued by counsel, or identified for consideration by the judges themselves in their judgments; although they are admirable, searching and thoughtful judges.
Bland in Hillsborough Disaster
A word about Bland and the case by way of introduction. When Anthony Bland was seventeen in 1989, his lungs were crushed in the Hillsborough disaster. His breathing stopped and his brain was deprived of oxygen. By the time his breathing was restored, his cerebral cortex, that is to say the upper brain’s outer layers, but not the lower brain, or brain stem, had been severely and irreversibly damaged. Subsequent scans revealed no evidence of electrical activity in his cortex.
After that, despite intensive care in the Airedale General Hospital, he remained in a profound unconsciousness, a state of chronic wakefulness without awareness, which is now commonly (perhaps unhappily) called a “Persistent Vegetative State” to distinguish it from sleep-like “coma”. The patient in a so-called P.V.S. responds in a reflex way; for example, to sounds.
Bland breathed unaided. There are references in the case to artificial ventilation but these are entirely irrelevant to the actual facts of the case. He couldn’t swallow and so he was fed by pumping nutritive fluids down a naso-gastric tube. He was evacuated by enema and catheter, and infections were treated by antibiotics. Cared for in that way, he was far from dying and seemed likely to live for years.
Now, four months – not two or three years, but four months after the accident – his doctor thought that feeding and antibiotics should be discontinued. But when the doctor contacted the coroner who was responsible for Hillsborough disaster fatalities he was advised that this might result in criminal proceedings.
About three years later, the hospital finally got round to applying for the declaration – several declarations in fact – the first declaration, that despite the inability of the defendant Bland to consent thereto, the hospital and the physicians responsible for his care might lawfully discontinue all life-sustaining treatment, and medical support measures, designed to keep him alive in his Persistent Vegetative State, including the termination of ventilation (which I said would be irrelevant), nutrition and hydration by artificial means.
The other declaration sought and granted was that no medical treatment need be furnished, “except for the sole purpose of enabling Anthony Bland to end his life and to die peacefully with the greatest dignity and the least distress.” The President of the Family Division, Sir Stephen Brown, granted those declarations and in doing so said that it was desirable that the court’s approval should be sought in what he called “similar cases”, and he said it was essential to seek the court’s approval where, in cases unlike this one, the opinion of the family might be divided.
And the Appeal Court and the House of Lords reaffirmed this desirability of going to court for terminating feeding and hydration. They said that, partly to reassure the public, such applications to the court should be made as a matter of routine, at least for the time being. But Lord Goff hoped that this requirement of going to court might soon be relaxed – and I’m sure it will be; for this reason, if for this reason alone, that the requirement of going to court is hardly consistent with what the Lords, unlike the courts below, identified as the true legal position: that discontinuance of life-sustaining measures in such a case is not merely permissible, which is what the declarations sought to make clear, but is indeed the duty of physicians who, in line with a body of reputable medical opinion, consider invasive life-sustaining measures no longer in their patient’s best interests.
"Invasive" medical care
I will read you one passage from the judgment of Lord Browne-Wilkinson:
“The right to administer invasive medical care is wholly dependent upon such care being in the best interests of the patient. Moreover a doctor’s decision whether invasive care is in the best interests of the patient falls to be assessed by reference to the test laid down in the case of Bolam (1957); namely, if the decision is in accordance with the practice accepted at the time by a responsible body of medical opinion. In my judgment, it must follow from this that if there comes a stage when the responsible doctor comes to the reasonable conclusion, which accords with the views of a responsible body of medical opinion, that further continuance of ‘invasive’ life supporting measures is not in the best interests of the patient, he can no longer lawfully continue them. To do so would constitute the crime of battery and a form of trespass to the person.” Therefore he cannot be in breach of any duty to maintain the patient’s life.
It seems to me, with respect, their Lordships didn’t quite measure the full implications of this analysis of theirs. How can the court’s approval be required to discontinue what on that view has already become a tort, and indeed a crime? You notice that the President of the Family Division said that the court’s approval should be sought in “similar cases”. What “similar cases?” Well, as you can tell from that passage of Lord Browne-Wilkinson’s judgment, what’s a similar case would depend on which unconscious, or other unconsented, patients some reputable body of medical opinion comes to consider unable to be benefited overall by life sustaining measures.
You will have noticed also the reference to ‘invasive’ life-sustaining measures. The concept of invasiveness doesn’t make any appearance in the judgments of the Court of Appeal, or the Family Division, but the Lords treat it as important. Still, in doing so they do not dissociate themselves from Lord Justice Butler-Sloss’s suggestion in the Court of Appeal that no line need be drawn among different forms of feeding such as “spoon feeding a helpless patient or inserting a tube through the nose.” So she treated spoon-feeding as invasive, and nobody expressed any dissent from that – not the Lords, not the judges.
That was her reason for preferring to call such feeding “medical care” rather than “medical treatment”. The Lords all considered the appropriate description for the life supporting steps whose discontinuance they judge the law authorises and requires, to be “medical treatment or care”.
So this is quite an important implication of the case. Despite the wording of the declarations and the incidental sayings in the case, the artificial aspects of Anthony Bland’s regime of feeding are probably no necessary part of the argument justifying the permission (and duty) articulated by Bland; that is to say, the supply of nutrients may in a proper case be discontinued whatever the means of supply, with a teaspoon as much as with a tube.
Intention of terminating life
Now I think I have mentioned two fairly striking
implications of the case; it’s not simply permissible, it’s also a duty;
it’s not just tube feeding, it may also be feeding with a spoon. Let me move
to what I think is the most striking implication, the most novel and I think the
most grave significance of the case. It’s the view of the majority at least of
the House of Lords, three of them, if not the other two, that this sort of
discontinuance may be proper, and indeed required, even when it is decided on
with precisely the intention of terminating life.
Now, it’s important to see that by the use of this word “intention” and related words, none of the judges meant what many academic lawyers, I think artificially and wrongly, mean by and include within the concept of intention. Many academics argue that one’s intentions include whatever effects of one’s conduct one foresees, or at least foresees as certain. That I think is a notion quite foreign to common sense, to sound philosophy and to a lot of recent judicial authority, including a very convincing article in 1988 by Lord Goff.
The synonyms for the word “intention” used in the judgments of the majority of the Lords in Bland’s case make it clear that they are not using any artificial notion of intention. They say this sort of thing: “The proposed conduct [I’m quoting Lord Mustill] has the aim of terminating the life of Anthony Bland, by withholding from him the basic necessities of life. The conduct is intended to be the cause of death.”
Again I quote, Lord Browne-Wilkinson, “This is a course of action designed to cause certain death. What is proposed is to adopt a course of action with the intention of bringing about Anthony Bland’s death the whole purpose of stopping artificial feeding is to bring about the death of Anthony Bland.”
Finally Lord Lowry: “The intention to bring about the patient’s death is there.”
I think two interesting questions arise in relation to that: where did the Lords’ majority get this finding or assumption of the fact that there was this intention? Secondly, why is a course of action, (“conduct” as they call it), done with such intention and such effect not murder?
Take the first question. The President of the Family Division who heard the witnesses, although he recorded what he called the principal argument of Mr. Munby QC, who was arguing for the guardian ad litem in the interests of Anthony Bland, the argument that the proposed withholding was the doing of an act intended to lead to Bland’s death) he made no finding of fact about that matter. He made no comment on the question of intention one way or the other; he ignored it. Nor do you find any mention of the issue of intention in the Court of Appeal judgments.
Then you find Mr Munby’s contention about intention surfacing again in the House of Lords. Lord Goff, with whom Lord Keith agreed, rejected Mr. Munby’s argument that discontinuance of artificial feeding was equivalent to cutting a mountaineer’s rope, or a diver’s air-pipe. If Mr. Munby’s argument was meant to justify an inference that there must here be an intent to cause death, in Bland’s case, Lord Goff was right to reject it. There was a British climber in the Andes a few years ago who finally cut the rope on which his friend was dangling, lest he himself became dragged over the precipice, and who several days later found to his amazed delight that the friend who he had thought certain to be killed had in fact fallen unscathed on to deep snow. That climber who cut the rope clearly had no intent to bring about death, or any lesser harm, although he foresaw it; he felt certain. And similar incidents might occur with various scenarios involving tangled air pipes and divers.
An end or a means
What is intention? One intends to bring about something, x, if and only if the bringing about of x is either an end or a means in the proposal which one shapes by deliberation and chooses to adopt. When I say deliberation, it may be very, very rapid.
So I would say this, using that concept of intention (which I think is basically the common sense concept of intention): if one withdraws life-sustaining measures precisely and simply because that has been requested by an incompetent patient, because in the view of that patient those measures are burdensome, then one need not be purposing, aiming at, or intending the patient’s death, although one foresees it as certain. One’s purpose and intent is to honour the patient’s wish, and the patient’s wish is to be relieved of the burden of those measures.
One does on the other hand intend to bring about death as a means, not necessarily as a final end or as something desired in itself, if one withdraws nutrition because withdrawing it is the one way of ensuring through death that benefactors will be paid under a term life insurance policy, or that a regime of nursing care which threatens to last for years will be terminated and the costs of them applied instead to something else, or as a means of ensuring that parents will be relieved of their grief and the spectacle of their child’s hopeless disability.
I think that, with respect, in the absence of the findings by the trial judge and apparently in the absence of any cross-examination designed to bring out, as in a criminal trial, what were the responsible physician’s deliberations and his intentions – in the absence of that, the appellate courts should have proceeded on the basis that: “Well, yes, there may well have been, but perhaps there was not, the intention to terminate the client’s life.”
But of course a court of law’s fundamental interest is the other question; the question of law and principle. If there was such an intention, did it make the proposed withdrawal of life sustaining measures an offence? Homicide? Even murder?
As I have said, the majority of the House neither followed nor challenged by Lords Keith and Goff thought not. The whole House agreed that withdrawal is an omission, not a positive act of commission, and so they said it would be unlawful only if there was a duty to take the steps omitted.
Extraordinary argument
Now it’s rather important to notice something that hasn’t been reported in the press that I have seen. In saying this the Court of Appeal are silently rejecting an extraordinary argument developed before the Court of Appeal at least, and maybe also before the House of Lords, developed by the amicus curiae appointed by the Attorney General, instructed by the Treasury Solicitor. It is not mentioned in the judgments, not mentioned in the existing reports, but I have it here in the document (written argument of counsel) before me. I quote:
“The issue is not whether the withdrawal of treatment is an act or a deliberate omission, but whether such withdrawal is lawful. Thus no relevant distinction is to be drawn between, for example, the administration of a lethal dose to a incompetent patient, and the withholding of a necessary nutrient or medicine from such a patient.” The Court of Appeal and the House of Lords silently rejected this submission; they did so by relying simply on the distinction which that submission rejected, the distinction between an action, or a positive action, and an omission. Well, we can welcome their rejection of this remarkable submission, by counsel in effect for the Government, but we must, I think, be able to recognise that the basis on which they rejected it leaves the law in the words of Lord Mustill and Lord Browne-Wilkinson, “misshapen and almost irrational” and, I want to argue, unnecessarily, because there was available, but it seems not argued, a better development of the well-established rules of law laid down in the middle of the nineteenth century and reaffirmed in the early years of this century in the cases of the Queen v. Bubb, and the King v. Gibbins and Proctor.
Those cases were not cited in the Family Division, they were not orally argued, or cited, or mentioned in the Court of Appeal, but they do surface in some of the judgments in the House of Lords. They establish that someone who undertakes the charge or duty of caring for a dependent person, for example a young child, and omits to supply the necessary food or clothing with the intention of causing death or serious bodily injury is guilty of murder.
A duty of care
Those cases, of course, did not confront the argument that was successfully raised in Bland; namely that someone who has undertaken a duty of care may still have no duty to exercise that care so as to sustain life. But the proper application or extension of the ruling of Gibbins and Proctor in the face of that argument was surely this: those who have a duty to care for someone may never exercise that duty in a manner intended to bring about that person’s death.
In my view, Parliament ought now to enact a statute laying down that rule of law which has been a rule of law for many hundreds of years, and which was substantially rejected without discussion of its own substance by the House of Lords in their judicial capacity: that those who have a duty to care for someone may never exercise it in a manner intended to bring about that person’s death. What I think is misshapen and indefensible is a law that treats as criminal a harmful act, a “positive act”, whilst treating as lawful, and indeed compulsory, a so-called omission done with the very same intent, by someone who has a duty to care for the person injured or thus killed.
There is nothing misshapen about a law treating acts and omissions alike when they are deliberately adopted with the same intention. There is a legal doctrine, different from moral principle in my view, that harmful intention by itself does not make an omission criminal. That that legal doctrine need not and should not govern a case when someone who already admittedly has a legal duty to protect the party harms the omission with intent against that type of harm.
Anyway, the judges in Bland proceeded on the basis that the responsible physicians no longer had any duty to prevent Bland’s death. His death would be for him, they judged, no harm or loss, or as they put it, “neither continued life nor the measures necessary to keep him alive were of any benefit to him or in his best interests.” That is the substance of the case.
Bolam v. Friern (1957)
Now, the Lords other than Lord Mustill reached this judgment wholly or very largely by applying the doctrine in the case that you heard mentioned: Bolam v. Friern (1957), the case which lays down that the law should follow a responsible body of medical opinion. Here they say there’s a responsible medical opinion that life in a Persistent Vegetative State with no prospect of recovery is of no benefit. It is interesting that on the very day that the President of the Family Division gave judgment in Bland, the High Court of Australia (which is greatly admired, especially in the House of Lords), in a case called Rogers v. Whitaker, unanimously disapproved the entire principle in Bolam’s case; the principle that the law should follow a responsible body of medical opinion.
Radically unsound
But even if as is still the case in this country the Bolam principle has some appropriate sphere in deciding what is the duty of doctors to inform patients about the risk of certain procedures, the application of the Bolam principle to the question: “Who have or who have not lives worth sustaining; protecting against intentional termination?” seems to me radically unsound and I think we can get no comfort from Lord Lowry’s statement that “I reject the idea that informed medical opinion in these respects is merely a disguise for a philosophy which if accepted would legalise euthanasia.” For the issue is not one of disguise, or sincerity. It is the issue: What are the true implications of principles and notions which are being put into practice by a group of citizens whose medical qualifications and experience and ethos, for all their value, confer no sufficient standing or basis to settle for the whole community such issues of meaning, consistency, of humanity and justice?
Still, having said that, I have to grant that the judges whose responsibility it was to settle those issues themselves were apparently in full accord with the principles and notions which are implicit in the medical opinion to which they deferred.
Dualistic distinction
The judgments all in one way or another suggest a dualistic distinction between Bland himself and his body. For example, Sir Stephen Brown, President of the Family Division, says “his spirit has left him and all that remains is the shell of his body.” Lord Justice Hoffmann says that “his body is alive but he has no life; he is alive but he has no life at all”.
This sort of dualism, which thinks of the body as some sort of habitation for, or an instrument of, the real person, is defended by remarkably few philosophers indeed, whether they be religious or otherwise, because this sort of dualism renders inexplicable the unity in complexity which one experiences in everything one consciously does. This sort of dualism speaks as if there were two things, other and other; a non-bodily person, and a non-personal living body. But neither of those can one recognise as one’s “self”. One’s living body is intrinsic, not merely instrumental to one’s personal life.
Each of us has a human life (not a vegetable life and an animal life plus personal life). When that life is flourishing it includes all one’s vital functions including speech, deliberation and choice, and other things such as love. When that life is gravely impaired it lacks some of those functions without ceasing to be the life of the person so impaired.
People in so-called PVS are gravely damaged. At least for the time being. (‘Persistent’ does not in fact mean permanent – quite a few of them, as scholarly medical literature shows, recover substantially after months or in some cases, years in PVS). But since bodily life is not merely instrumental, extrinsic to the reality of the value of the human person, the inability of such people to participate in any other basic human good, other than life, doesn’t nullify their participation in the good and benefit of human life; not even if that participation is as wounded and deficient as hopelessly as Anthony Bland’s was.
Treatment reasonably
restricted
Does that mean that they must be given all medical treatments which would be provided to a patient in better shape, with better prospects? Does it mean, for example, as Mr. Munby (unfortunately as I think) contended, that they should be given a heart by-pass, or kidney transplant, should the occasion arise? Surely not. Even in an affluent society such as ours there must be limits to medical treatment and it is in my view reasonable to decide that no one should be sustained indefinitely by costly medical regimes.
Presumably it’s reasonable to treat medicine’s objectives as limited generally to, – firstly, the maintenance and restoration of health, the well-functioning of the human organism as a whole, which some desirable proximation would help, and secondly to the palliation of suffering. For patients such as Bland the first objective, restoration of health, is unattainable, and the second, the palliation of suffering, is irrelevant. Such a patient stands to benefit in a way, but only a very limited way from many sorts of medical treatment. Those sorts of medical treatment may reasonably be restricted, in my view, to those who will benefit from them more.
But not everything that doctors do in the care of patients is directed to achieve the objectives of medical treatment. The judgments in my opinion all embrace the fallacious inference that if tube feeding is part of medical treatment or care, tube feeding is therefore not part of the non-medical home or nursing care, which decent families provide or arrange for their utterly dependent members.
This non-sequitur is compounded by a failure to note that, although naso-gastric tube feeding will not normally be established without a doctor’s decision, no distinctively medical skills are needed to insert a naso-gastric tube, or even maintain the supply of nutrients through it.
To break off
solidarity
To desist from medical treatments designed to prevent, retard or cure illness on the ground that, for invalids such as Bland, these treatments will achieve a benefit too limited to warrant this resort to medical resources, need involve neither intent to terminate life nor a will to cease caring for such invalids. But on the other hand, to desist from providing at least food and basic hygiene to invalids whose death is not imminent, and to whom the processes involved involve no significant burden seems in my opinion to be either (i) to intend and bring about their death as a means, for example to saving the other costs involved in their continued existence; or secondly, it’s to make a choice (however hidden that choice is by benign sentiments and palliative accompaniments), a choice to cease providing care for them. And in an affluent society, unlike a society for example after a nuclear attack, or suffering from ethnic cleansing, where attending to the needs of the able bodied might reasonably be preferred – in an affluent society, to cease providing care for such persons is willy-nilly a choice to deny the personhood of these invalids by as I would put it, breaking off human solidarity with them at its root.
Existence
humiliating?
Well. That line of thought that I have been developing is not perceptible at all in Bland, not even mentioned in order to be refuted. The judgments almost all propose a contrary argument derived immediately from the dissenting judgments of the American Supreme Court in the case of Cruzan 1990, an argument developed extensively in writings by my colleague Dworkin acknowledged in the Court of Appeal by my former colleague Lord Justice Hoffmann. This is the argument:
Bland’s continued existence was not merely no benefit but actually a harm to him. It was to him a source of indignity, a violation of his wish to be remembered well. It was a humiliation.
This argument, which found its way into almost all the judgments, is profoundly significant. It undermines Lord Justice Hoffmann’s own hopeful dictum that “Because Bland’s condition differed in kind”, he said, “from that of a severely handicapped but conscious person, the case of Bland has no ‘eugenic’ implications.”
I fear it undermines that thought, because epithets of indignity and humiliation could easily be applied (as in recent history) to kinds of severely handicapped people, many of whom moreover can’t exercise the distinctively human, or as people say, personal thoughts of understanding and response; and the judicial application of such epithets to Bland’s existence or to the care provided for him depends on an equivocation, a fallacy of ambiguity which is most clearly evident in Lord Justice Hoffman’s judgment, where the argument is most amply developed.
Very early on in the judgment, Lord Justice Hoffmann describes the principle of respect for individual dignity in these words:
“Quite irrespective of what the person concerned may think about it, it is wrong for someone to be humiliated or treated without respect for his value as a person,” whether by self-demeaning actions or by the disrespectful actions of others.
So far so good. But later in the judgment Lord Justice Hoffmann states that discontinuing feeding Bland will . . . . “. . . . put an end to the humiliation of his being. . . . ” “grotesquely alive. . . . ”, and so forth. And so the judge slides from one moral sense of dignity and indignity and humiliation, to another quite different emotional sense of it that would be better captured by the word “undignified”.
The fact is that Bland could indeed have been subjected to indignities, for example being treated as a sex object, or thrown alive onto the hospital tip, and that confirms (does it not?) that he remained a person, with some interests that could be harmed or benefited. But, with all due respect to the court’s incautious rhetoric, the nurses’ devoted care for him did not humiliate or demean or treat him without respect for his value as a person. On the contrary.
Deeply unsettling
As Lord Mustill acknowledged, the proposed discontinuance
of care was going to require the nurses to act contrary to all their instincts,
training and traditions, because, as I would put it, their relationship to Bland
was one of (largely unreciprocated, of course) human solidarity between persons,
and as such it benefited both them and him. The failure to distinguish between
being subjected to indignities and being or being put in an undignified
condition or position, that failure of distinction is perhaps the most deeply
unsettling aspect of the case of Bland.
For there are many of us who might be rescued sometime from an undignified
condition by the benevolent termination of our life. There I shall rest my
discussion.
In Answer to Questions
There’s no doubt
that the modern definition of murder, before Bland’s case and independently of
any decision in Bland was somewhat clearer than it was when articulated by Lord
Justice Coke in the seventeenth century. The old concept of “malice” has
been much clarified in the twentieth century, in terms of the key concept, and
rightly so, of intention. The basic definition of murder is causing the death of
another person in the Queen’s peace, within a year and a day, by an act, or
omission, intended to kill, or intended to cause grievous bodily harm. That’s
the definition of murder.
A qualification of
that is introduced in Bland, to the effect that that definition applies fair and
square where the course of conduct which is the cause of death is a positive
act; but where it’s an omission, done with intent to kill, to terminate life,
it will not be murder if an omission to perform a duty with intent to terminate
life was entered upon in the “best interests” of the person whose life was
terminated, in accordance with the opinion of a responsible body of medical
opinion. That would be, I think, the new, somewhat ramshackle definition of
murder.
In other words, the
new definition of murder is the old, that is to say, mid-twentieth century, good
definition of murder, with strapped onto it an exception, not, with all due
respect, as extensive as the questioner was suggesting; not licensing doctors to
terminate life by any means, but licensing doctors to terminate life by
omission, as opposed to a so-called positive act, when they consider that to be
in the best interests of the patient and that opinion is backed up by a
responsible body of medical opinion.
On any view of the
law there are going to be some fine distinctions, and beyond the central
doctrines of the law (whatever it settles down as) there are going to be areas
within which reasonable men or practitioners will differ one from another, in
their view about what’s reasonable to be done or to be omitted.
There are going to be
new distinctions in any case. Now, I accept that the distinctions that I was
presenting as in my view sound, are fine. But in relation, for example, to tube
feeding: if a competent patient rejects a specific form of treatment (or care,
for that matter – as burdensome – as not something I want for myself –
knowing that that rejection will result, sooner or later, perhaps very soon, in
their death, that can be, and in my view often is a non-suicidal decision,
involving no intent to terminate their life, but accepting their death as
foreseen, as a certain side-effect of a reasonable decision to reject the
burden.
Now I know that a lot
of people would simply assert that if they foresee it as certain they must be
intending it. But that simply isn’t the case. When I fly across the Atlantic I
know that I am going to get jet-lag, I don’t intend it; when I walk here I
know that I am wearing out my shoes; I don’t intend to wear out my shoes.
There are countless distinctions that we make of this sort. When I hang up
curtains in the sun I know that they are going to fade, I don’t intend them to
fade; so the fact that a side effect is certain is no demonstration that it’s
part of what I intend.
If the law remains as it would appear to be in Bland,
where intention to kill is central to the definition of murder, but at the same
time, intention to terminate life is accepted when it’s by a so-called
omission, it will remain, as the authors of this law themselves say,
“misshapen, morally indefensible”, not a distinction that we can hold on to.
The distinction might survive in some form or other, for some years; it
might survive for decades, we don’t know. But it’s unsound in principle, and
I therefore suspect that it won’t survive, and that the movement of the law
will be all the way across the Rubicon so as to support the intention to kill by
the medical profession in the pursuance of a “reasonable body” of medical
opinion when it’s said to be in the best interests of the patient, by positive
act as distinct from omission.
The distinction is
going to have to be drawn in terms of intention one way or the other. Either we
reject the intention to terminate life, or we accept the intention to terminate
life, and along with that comes so-called “positive” euthanasia. If there
were some other basis for drawing a distinction which didn’t involve drawing
fine lines, we would welcome it, but this is the stuff of our situation.
Morals,
ethics and the need for balance
Professor Peter H. Millard, MD, PhD, FRCP
Thank you for asking me to speak to this important and timely conference. I propose to make several comments concerning choices, decisions, morals, ageing, population growth, the need for balance, hospital beds, withdrawal of treatment, responsibilities of doctors, decision making at the end of life and the influence of Dutch medicine. I will then conclude by saying that support for euthanasia is the end of life. I shall start with choice.
Choice
The choice to do one thing is a choice not to do another. When Dr. Peggy Norris asked me to speak at this conference I said ‘No’. Then I reflected on that decision. Twenty-five years ago I kept silent when abortion was being discussed. Now over 160,000 potential human children are killed each year. Over three million children and potential adults have been denied life. Now the forces of destruction move toward decision making at the end of life and I cannot keep silent. So I chose to do today’s ward round yesterday. Similarly, governments must choose.
In 1946 the government chose to under-pin the National Health Service by introducing physician leadership in rehabilitation into the chronic sick wards. Now this country has the finest geriatric medical services in the world. Other countries chose to run separate medical services for acute, rehabilitation and long stay services. Denmark led the way in providing quality personalized single room accommodation for long stay patients and Holland developed nursing homes. Recently, Holland has decided to turn a blind eye to physician assisted or induced death at the end of life and other countries, such as our own, are being urged to follow suit. Yet in campaigning for death advocates fail to realise (or openly state) the likely outcome of their decision-making.
Non-treatment decisions
The doctor treats but nature heals. An old adage is that symptoms and signs are nature’s expression of defence against disease. A patient with pneumonia is breathless because the body needs oxygen; this breathlessness could be controlled with opiates such as morphine, but the patient would die. That is why physicians tread a fine line between life and death - our actions have to be on the side of life, for assisting death is too easy.
If campaigners think that by preventing our treating them they will die they are mistaken. If one does not treat an older person with pneumonia they end up as bed-bound wrecks. If you have ever seen a bed-bound patient with contractures and pressure sores you will know what I mean. That is why I chose to submit evidence to the House of Lords working party on medical ethics. Similarly, the British Geriatrics Society submission states that physician assisted death is not in the interest of our population.
The law and medicine
Medicine and the law make strange bedfellows. If the law enters too far into medicine the lawyers will find themselves in a field that is too difficult to understand. Medicine is a profession with its own codes and rules of practice. These codes, honed over centuries, protect the doctors from the patients and the patients from the doctors. Society alters these codes at its peril.
Analogies with health care in the United States are not apposite. The United Kingdom has a first class coroner’s system. Such a system does not exist in the United States. Also we have a National Health Service and our physicians are (because of the coroner’s system) not afraid to accept responsibility for decision-making at the end of life. That is our professional task and government changes that responsibility at our peril.
Morals and ethics
Morals and ethics are different. Making something legal does not make it moral. Ethics are the ethos of our or their society. Governments can make the laws; judges can enforce these laws; medical bodies may punish those who transgress; yet all of these actions do not add up to a moral good.
Consider abortion. Young Catholic doctors and Muslims have difficulty in gaining employment in departments of Obstetrics in the National Health Service. Why? Because they oppose abortion. So, gradually, inexorably, the face of obstetrics changes. Similarly, introduce euthanasia and the face of medicine would change.
The need for balance
A facile answer to concern for life is to denigrate Christianity. Yet concern for life and a need for balance far outdate the Christian view. The Hippocratic oath, 500 BC, concerned protection of life. Similarly, the Ancient Chinese, 3000 years before the dawn of Christianity, taught the need for a balanced approach.
The Chinese argued that a society must maintain a harmonious relationship between their gods, their laws, their teachers and their families. They expressed this in the ‘Yantras’, a form of painting that is used for meditating. So a society at peace with itself makes rules that create harmony, rather than rules that create discord.
Withdrawal of Treatment
A recent court case concerning the withdrawal of nutrition from a man in a ‘persistent vegetative state’ gives cause for concern. Doctors accept that people die. Doctors do not like to see people starve to death. Yet the court ruled that the tube feeding could be withdrawn not ‘because the person was dying’ but ‘because the person would be better dead’. In so doing the court crossed the slippery slope between life and death.
Medical decisions are made to withdraw treatment because death is imminent and inevitable. If recovery is unlikely but death is not imminent decision makers cross the Rubicon; “the road to hell is paved with good intentions”.
The BMA advises that life-prolonging treatment should be continued for unconscious insentient patients for twelve months. What is the magic figure of that time? All cases of withdrawal of treatment must be subject to court review. If any physician having care of a patient in a persistent vegetative state disagrees with the decision to withhold medical treatment (in the case of discussion, food and water) on moral, not clinical grounds, that doctor cannot be obliged to act contrary to his or her conscience.
So the British Medical Association realises that the courts are in conflict with members of society. The BMA seeks consultation with the courts to build up a body of experience and practice, yet the profession – if it is to be a profession – has to control itself. Excess at either end is wrong. Striving to keep officiously alive is just as dangerous as doing too little. Yet if I wanted my doctor to err I would expect him to err on the side of life.
Guidelines
Faced with a problem people like to abdicate responsibility and the medical profession is no exception. The BMA wants to go to the courts; a professor of medicine in Sydney wants to go to the patient. Why, I ask myself, does the country train us and pay us if they don’t want us to carry the responsibility for our actions?
What is a doctor’s task? What are we to do if we are simply to follow a patient’s instructions? Has the patient studied medicine? After all, doctors make the worst patients. If you give a patient a right, the doctor has duties. That is why guidelines must protect the paternalistic approach of medical decision-making.
The role of the profession
A letter in the Catholic Medical Quarterly on behalf of the Chairman of the Medical Council in reply to a letter from Dr. Howitt Wilson shows how the profession is seeking to abdicate responsibility.
The
President has asked me to explain that while he understands your reasons for
concern he cannot support the view that the medical profession rather than
society as a whole should decide matters such as abortion and euthanasia. These
are issues not primarily of medical ethics, but of wider moral and religious
concern, and must be decided through the democratic processes of parliament.
In other words, the General Medical Council is quite happy to be responsible for important matters such as advertising for patients, fornicating with patients and drug abuse, and content to follow the lead of parliament in moral and religious matters such as abortion and euthanasia.
Did not the
profession at one time condemn German doctors for obeying; did the Nuremberg
trials speak out for the values I hold dear?
Sarah Whitfield SRN
Thank you very much for inviting me to talk to you today. I feel a little in fear and trepidation after two such able speakers but what I hope to share with you is the nurse’s view of patients with this particular condition, and also perhaps describe to you some of the detailed care that needs to be given.
My own background is I am a general nurse; I have been a ward sister where we obviously had people with chronic illnesses. I currently chair a small medical mission where we run nursing homes for older people and one home for the physically disabled, because one of the tenets of whether people want euthanasia or not is whether they are being offered appropriate care and the different facilities that are available, and the support that is available for the families as well.
The previous speaker touched on the implementation of community care, and my current job now is that I’m in a purchasing health authority, Camden and Islington, where we are responsible for purchasing care for the local residents who live in Camden and Islington, and I am there with several roles but one of them is nurse adviser to the health authority.
Continuing responsibility
We have been discussing with both our local authorities, Camden and Islington, definitions for residential care, nursing care and NHS continuing care. You may wish to know that we have agreed as a health authority, with our two local authorities, that patients who fall into the category, “persistent vegetative state”, (I hate the term), we have agreed with them that it is an NHS continuing responsibility; in other words, we would fully fund it from the Health Authority, but not necessarily in an NHS hospital. We would be prepared to pay for that in a specialist unit because there are places like Putney where they specialise in the care of those sorts of patients. So we have very clearly said that that is our NHS continuing responsibility, because of the nature of the care that patients in that state require.
But we have also said that if the relatives chose to take the patient home, we would be prepared to fund the relatives for the same amount that we would if we were paying for in an institution; and that is quite a key issue, because it’s the role of the purchasing authority with the local authority to make the decision about residential care, nursing care and NHS continuing care, and where we are we obviously have quite a wide, complex population, but that is how our definition is at the moment which has been agreed with two rather different local authorities.
So what I want to do this morning is to focus on the nurse’s role in caring for patients, I say “in a long term state of unconsciousness” because as I said I don’t like “persistent vegetative state”; the person in that condition is not a vegetable but, I believe, a human being, a very unique individual, with family and friends who know him as a person, and one of the challenges for nurses and doctors when they are faced with a patient as a result of Hillsborough or whatever is that they didn’t know him as the person he was before, and one of the nurses’ roles is to get to know patients and to get to know their relatives so as to talk to them about what that person was like, because however they are now is obviously not what they were before.
Principles of nursing such patients
What I want to do is to take you through the principles of nursing such a patient and I apologise to the professionals who already know something of what I am going to talk about, or indeed those of you who are not professionals, because that does also include not only the physical care, but the care and support of the family, and that is an area which we haven’t touched on very much yet this morning, but I am conscious we’ll go into that this afternoon.
I’ll also look at whether or not nutrition via a tube is medical treatment or nursing care, challenging, perhaps, my medical colleagues about whether it is medical treatment or nursing care, and then I’ll look at the professional and ethical position that nurses are in when they are faced with a legal decision to stop nutrition, which is what the nurses in Tony Bland’s case were faced with, and thereby end the life of someone they have been caring for, often for many months, and even years.
Caring for a person who is deeply unconscious and can do nothing for himself calls for skills that those who enter nursing see as being fundamental to the art and practice of nursing. If you ask a lot of people why they go into nursing, it’s because they want to care, and clearly what they see in an unconscious patient brings out all their skills of nursing. And they give that care 24 hours a day, 7 days a week, 365 days of the year. And therefore they are actually closer to the patient every day than the medical staff, and obviously the family, if the families are coming in regularly to see them.
Nurses are educated and motivated to give a high standard of care, which sustains and promotes the quality of life for their patients. An unconscious patient demands a high degree of practical skills and expertise to prevent complications, because he is completely dependent on the nurses for what we call activities of daily living. He is unable to move and therefore regular changes of position are required, both in bed and in chair.
I think in all the shots I saw of Tony Bland he was in bed, but there is no reason why these patients cannot be put into chairs and there are now some very good chairs that have been designed to help patients with this particular condition. One of the common complications of someone who is not able to move is that they can get bedsores, and certainly as a nurse, we see it as a failure of our care if we have allowed a patient to develop bedsores, and therefore there are various devices to prevent them getting sores; regular turning, special mattresses, sheepskins and bedcradles. So there are things that we’ll use to help us.
As natural as
possible
It’s important that the patient’s limbs are kept in as natural a position as possible, so their legs, arms, even fingers; their head and neck and shoulders, need to be carefully positioned in a natural position, and that’s where we often call on the physiotherapists because they have particular expertise that can help us in positioning the patient.
Obviously he is unable to wash himself, and therefore it is the nurses that will do that for him, and we always ask the relatives to bring in the flannel, the sponge, the soap that the patient uses at home, and not NHS best, which isn’t always very attractive. We have to keep his mouth clean and refreshed, his hair combed, and it’s important to keep it arranged as he liked it, not what we might think looks neat, but if he was used to having it a certain way, we need to rely on the relatives to help us, also to show us how to arrange his hair like that.
He obviously can’t dress, so we would help him to dress, and to be put in day clothes during the day. Tracksuits are now very popular, I think because they are easier to put on and take off, but it does give someone a sense of personal identity that is important.
Gastrostomy
We’ve already gone a lot into the fact that someone like this can’t eat or drink, and therefore they may need spoon-feeding. I don’t know the details of the Bland case as to whether it was very slow which was why they did put a tube down, but there is also an alternative which has been touched on which is a gastrostomy, which is putting a tube into the stomach, a minor operation, but actually aesthetically is better because you haven’t got a tube around the face.
It’s considered that for some patients that also might be better because they won’t be worried by a tube and it also makes them look more normal because you can’t actually see the tube, and feeding is facilitated, and certainly with some patients that I have had, that has been easier to manage than a naso-gastric tube.
The patient has no control over his bladder or bowels and therefore there is usually a catheter, or a tube into the bladder, and the nurses are responsible for looking after that and keeping it clean, and we’ve heard at the beginning that the bowels don’t work without some help, and therefore enemas are given.
Music
The patient can’t entertain himself and therefore the nurses work with the family to offer him appropriate stimulation and you’ll remember in Tony Bland’s case the football memorabilia were around his room, and that’s actually important because that’s what he wanted. Playing the music that he likes may not be what the nurses like but it’s important that he gets the music that he enjoys, and allowing pets to visit if that is appropriate. I’ve certainly had pets coming into the ward; I think the nursing officer used to turn a blind eye.
That sort of stimulation can be important because I think one of the very important aspects that we cannot judge is just how much a patient like this can hear, can understand, and even if they may not understand the words, the tone in which the words are given and therefore nurses are taught never ever to talk across a patient, but always talk to him; certainly they may be talking about what they did last night, but that is addressed to the patient, and telling him what the weather’s like.
Patient as an individual
Nurses are taught very much to focus on the patient, and that it is not good care to talk across a patient who is apparently not reacting, and it’s drilled into you from day one; it was certainly with me as a first year, and as a ward sister, I drilled it into the nurses that I had on my ward. You can never tell. Hearing, they say, is the last sense to go and the first to come back with somebody, and I’ve certainly had some surprises going round the ward to someone who has been unconscious for whatever reason and going up to them, holding their hand and saying “Good morning”, and then being quite surprised when they’ve opened their eyes, so I think that it’s important.
I don’t think we
know enough about somebody in a P.V.S. to categorically say “They don’t
understand, they can’t hear, they can’t sense,” and I think it’s
therefore important that focus is still made on them as an individual.
Support of the
family
The other vital part of nursing care of someone like this is the care and support of the family. The nurses are there, they’re giving the care, they get to know the family very well, and it is part of nursing care to enable the relatives to come to terms with what has happened, to talk through their feelings of distress and grief, maybe day after day after day; but it’s usually the nurses that are there, because they are the constant pivot for the relatives when they come in.
Encouraging relatives to participate in care often helps them feel they are doing something useful, and contributing. And some of them may well want to take the patient home, and it would then be the role of the nurse to teach the relatives the care of the patient, and then the hospital nurses will be handing on to the community nurses when that person goes home.
It’s also important that relatives are not made to feel guilty for taking a day off as it were, from visiting; and I know in Tony Bland’s case we were told the family came in every day, but sometimes relatives need to be told that it’s alright to have a day off, and that we will be there to look after them, and that we can get in touch with them if we feel there’s a change, because it is important for relatives also to have some form of their own life outside. The same would be if the patient did go home, being able to offer respite care back in the hospital, or at home, for them so that they can have a break from that 24-hour care.
It’s obviously important that nurses never make the care of the patient and his relatives seem a burden, because nurses have a duty of care, the advantage that they have in a hospital or nursing home is that they can go off after their eight hours. That is not the same for relatives who make a decision to take a patient home; they are, if you like, on duty themselves 24 hours a day, and it is up to the nurses to give that care in a professional and caring and sensitive way, until the end.
Nourishment a basic need
Moving on, then, to
whether tube feeding is medical treatment, it’s my belief that the provision
of nourishment is a basic human need that should be met, and is considered part
of normal medical care of a patient and not treatment. There are a wide range of
patients who have naso-gastric feeding, or gastrostomy feeding for different
reasons, and nurses give it.
The nutrients (one of the questioners touched on this earlier)...nutrition by naso-gastric tube has now got very sophisticated, but when I first came into my training it was a lot more simple, but we do have dieticians who can advise us the appropriate nutrition. It can be already made; there are specially prepared cans that it now comes in.
But I don’t think this makes nutrition special. I think it makes it adapted to the special need of the patient, because if you’re a diabetic you’re obviously going to have a diet adapted for that, and we are fed at different stages of our life; we’re fed as babies, we’re fed as toddlers, when we are very sick we are fed, and the elderly often need help with feeding. So it is obviously my view that withdrawal of nourishment does have a very active part of bringing that person’s life to an end.
Other groups of patients affected
My deep concern about the Anthony Bland judgement to stop tube feeding is the implications not only for others in a similar state of unconsciousness, but many other groups of patients who have difficulty feeding themselves, such as children and adults with organic brain damage, and those with dementia, because we’re now into a very grey area if we’re saying that nourishment is a medical treatment and can be stopped.
If I move on to look at the implications for nurses themselves with the Anthony Bland judgement, people who enter the nursing profession are invariably highly motivated and caring men and women who want to make sick people better, prevent illness and suffering, and to care for patients and their families. They want to improve life, and people’s quality of life rather than to take active steps to end life prematurely.
“Safeguard interests and well-being”
The U.K.C.C. nurses’ code of conduct states that a nurse is expected to “act always in a manner as to promote and safeguard the interests and well-being of patients and clients”, and to “ensure that no action or omission on his or her part or within his or her sphere of influence is detrimental to the condition of safety of patients or clients.”
The Royal College of Nursing does not support the withdrawal of food and drink. Jean Thomas who is the assistant director of the Royal College of Nursing’s department of nursing policy and practice, said that the Anthony Bland judgement left nurses in a very vulnerable position.
Although the chief
nurse at the Airedale Trust where Anthony Bland was cared for said that
withdrawing feeding would be done in consultation with nurses and his family,
nothing has been said about those nurses who considered it wrong to stop feeding
Anthony Bland; in other words, those nurses who felt that it did go against
their code of conduct and their moral and ethical beliefs because they were
actually going to omit a basic part of nursing care in not giving naso-gastric
feeds.
No Conscience Clause
What was the position of those nurses? We’ve heard very little about the nurses in Tony Bland’s case. How did they feel, continuing to give all other aspects of his care, but not nutrition? Because they would have continued all other aspects of his care, and the one they wouldn’t have done would have been the feeding.
There is no conscience clause in the legal judgement, such as the one which covers conscientious objection against abortion, and Christine Hancock, who is the general secretary of the Royal College of Nursing, stated that the lapse between the cessation of feeding and eventual death would be “extremely difficult for nurses.”
The nurses who looked after Anthony Bland and who are currently caring for similar patients in a long-term state of unconsciousness, do get to know them and their relatives very well over long periods of time. Nurses are actively encouraged today as part of their professional education to find out about their patients so that they can care for them as individuals. They undoubtedly get close to the patient and his family, and the care of an unconscious patient is seen as a professional challenge and a means of giving skills and compassionate care.
To be involved in a decision to stop nutrition which will end the patient’s life prematurely is surely hard for nurses who enter the profession to promote and safeguard the interest of well-being of their patients. Such decisions place individual nurses in a vulnerable position, particularly if they feel they are in a minority.
Difficult to speak out
They may be
apprehensive about speaking out against such a decision, especially if they are
students in training, and qualified nurses may feel that peer pressure prevents
them putting the opposite view to medical and nursing colleagues. If we look
back to the case of the consultant who gave an illegal dose to a terminally ill
patient and was actually taken to court and charged with attempted murder, the
ward sister who reported him was given a very, very difficult time, and that’s
probably why we have not heard very much from the nurses in the Anthony Bland
case; because they saw what happened to a colleague who did speak out.
It was not a popular thing to do.
It is the nurse’s role to act as the patient’s advocate, especially when he has no close relatives. (It’s obviously different in Tony Bland’s case.) Patients who are unable to express their own wishes about treatment are very vulnerable, and nurses must safeguard the patient’s interest. I believe that there is a real danger of decisions being made about such patients in the interest of expediency or economy, rather than the true interests of the particular individual.
Nurses’ duty of
care
Nurses are educated and motivated to give care that sustains and promotes the quality of life for each of their patients, and not to bring about their premature death. A nurse’s duty of care is to care until the end, and again, maybe that’s where we’re different from our medical colleagues; it’s usually the nurses who are there at the moment of death with the relatives. They’re the ones who sit with them afterwards and take them through the early stages of mourning after the death has occurred.
We can always offer care and support and comfort to what I believe should be the natural end, and we can also support that patient’s family and friends by valuing the patient as a unique individual and a human being, who should rightly be cared for with dignity and compassion.
Comment: My name is Tom
Osbourne, I’m a board member of Headway, the national head injuries
association, and I’m also a lawyer who looks after and deals only with head
injury cases. At present I’m acting for the families of six P.V.S. patients
and on most of those I’m struggling to find funding for them to remain or be
looked after in the community, and in two of those cases, the Health Authority
are refusing to fund the parents to take their child home to look after them.
The position so far
as Headway is concerned is that we support the Bland decision, if that is the
wish of the patient and the relatives, and indeed it is discussed with them, and
the application is brought before a court. We would be opposed to any further
movement that allows the Health Authority or whatever to take that decision
without bringing the matter before the High Court judge. The point was made in
the Court of Appeal that “The resources of the National Health Service are not
limitless and choices have to be made. The Airedale Health Service Trust invited
us to decide the case on the assumption that its resources were unlimited and we
have done so. But one is bound to observe that the cost of keeping a patient
like Anthony Bland alive is very considerable and that in another case the
health authority might conclude that its resources were better devoted to other
patients.”
We do not have to
consider such a case, but in principle, the allocation of resources between
patients is a matter for the health authority and not for the courts, and I
would venture to suggest that if in fact I had been representing the Bland
family or a similar family, in bringing the matter before court, to demand that
they provide the resources and look after their patients, it’s very well
possible that the Court of Appeal could have decided that they had no power to
intervene, and again, the question of resources was a matter for the health
authority. So far as this meeting is concerned I would therefore ask you to
consider that the comment in the decision of Justice Hopkins is of far more
danger and concern to us lawyers, to us in the medical profession, and of
course, to the families, who are looking after the resources to look after their
relatives.
Comment: My name is Elizabeth Anscombe and I’m not a doctor and I’m not a nurse; I do philosophy. I wish to make a distinction about medical treatment. Obviously the judges think putting in a tube – gastrostomy or naso-gastric tube – is a medical procedure, because I take it usually the expertise of the doctor is necessary; but I would have thought keeping feeding was not medical treatment, even if there has to be some knowledge about what to put in which comes from a doctor.
There is something
else which I have to say about the extreme danger of such judgements as we had
from the law courts. My eldest child had a brain tumour, not a cancerous one,
was operated on in Houston in Texas last year on June 30th, is still in bed in
hospital, was brought to England in early December and is still in
Addenbrooke’s hospital in Cambridge. While she was in America from June 30th
till early in December, she was constantly visited, attended, by her family, in
fact we learnt what marvellous children we’ve got; they rally round like
anything.
One of them visited
her in Minneapolis (this was not in the big hospital where she was operated on
and was for a month in intensive care, but in a transitional hospital). The
doctor who was in charge of her when a son of mine came to visit her wanted to
kill her. He didn’t use those words, but what he did say is a little lesson in
how dangerous certain law decisions can be. He said, “Since Cruzan
everybody believes that nutrition and hydration are heroic measures. Now, what
about it?”
My son said what he
thought of what was evidently a proposal to force her to die of starvation and
thirst, whereupon the doctor said, “Well, what you think doesn’t matter,”
not meaning that what somebody else thought didn’t matter, but that he was
just her brother; he had not got any authority. I thought that that was a little
lesson in the dangers.
Comment: My name is Anthony Cole, general paediatrician. My question is a comment, and also a thank you for your paper. My experience of P.V.S. is exactly the same as that of Dr. Jim Howe. Of course most of us have had patients in advanced cerebral conditions, though it is somewhat less commonplace in paediatrics. This particular boy aged ten had a minor cardiac condition, and he had a cardiac arrest on his way to school; and was admitted, having been resuscitated in the accident and emergency department, having sustained irreversible, gross, neocortical damage. He went to the referral centre, was stabilized, had the usual diagnostic work done, and returned to us really to be with the family and close to home. And of course, being inexperienced in these matters I made the usual mistake of thinking I could look after him properly and made totally the wrong decision to put him in a side room and so on and so forth.
Well, I had the good
fortune of a strong Sister of the ward who put her foot down and said,
“We’re going to look after him properly, he’s going to stay in the middle
of the ward with everybody else.” They found out how to do it, he was properly
positioned, he was an asset to the ward. In an extraordinary sort of way he
taught us the meaning of his value, if you like. Can I put it to you like this
– when all that somebody’s got to give you is his or her humanity, it is
quietly compelling. And that young man was the most popular person on the ward.
The nurses loved him. They tended him beautifully.
His family gradually
came to terms with the outcome; we had discussions about what would happen if
this or that complication arose. We agreed that he would not be resuscitated if
he had another cardiac arrest. Fourteen months later that is what happened. They
remained in touch with the ward, they gave us many pieces of equipment, they
went through a natural process of grieving and, as far as I know, are healing.
He taught us a lot of lessons, which, unfortunately, were perhaps not put before
the court in the Bland case.
Dr. Norris: Our chairman
this afternoon is Mrs. Dena Tombs. Our next speaker, Doctor Tudor, had in
Putney, looked after her husband and I thought it was very appropriate we should
have someone like Dena; she’s been a great help to us.
Mrs. Dena Tombs: Thank
you. I’d like to introduce Doctor Maureen Tudor, who was the principal medical
officer at the Royal Hospital and Home in Putney, recently retired, but
certainly not from work.
Patients
with severe brain damage – some surprises
Dr. Maureen Tudor
Before I start I would like to congratulate Dena Tombs publicly on being nominated Catholic Woman of the Year. I think this is the most marvellous tribute to her, to the care she has given to Alan and the support she gave the medical staff at the Royal Hospital & Home, Putney. I have been asked to talk about persistent vegetative state, and what that means.
Well, the title of the whole symposium, “Futile patients?”; I prefer it changed around to read “Futile patients or futile treatment?” Now, who are these futile (so-called) patients? What are they suffering from?
These ‘futile patients’ can suffer from congenital or acquired disability, and the acquired disability can be subdivided into those who have progressive disease, or those who have developed their disability from trauma. And there you can see the type of thing we have: congenital; cerebral palsy, which may also have Hydrocephalus; Down’s Syndrome, a genetic disorder; progressive neurological diseases. During my years at the Royal Hospital I had, on average, a hundred people under my care suffering from multiple sclerosis, and I was there for thirty years so I saw quite a few people with multiple sclerosis, and then motor neurone disease has been mentioned, and rheumatoid arthritis.
How should one treat?
Now the trauma. How does that occur? Fracture of the spine; fall, road traffic accident, amputation, cerebral injury, cerebro-vascular accidents; these are all just a selection of conditions which will cause disability. Now how should one treat? In all of these sufferers life is apparent. Basically, any carers from whatever regime of caring do their utmost to maintain life and the dignity of life.
And the care comes from doctors, physiotherapists, occupational therapists, speech therapists, dieticians; they are all needed in order to get that person moving, prevent contractures, to be able to sit properly, to be stimulated, to make sure that they have adequate nutrition, they need instruction as to how they are going to be able to talk or swallow again, not giving these disabled people a task which is above their abilities. You must never do that, otherwise they’ll just curl up; “What’s the point of trying? I can’t do it.” Now, these really are the only real objectives for any disabled person but today, as we have said, we are dealing with those who are the most profoundly disabled, i.e. those in a persistent vegetative state.
Where did this term
come from?
Now, what does this really mean? A lot of sentimental nonsense has been written and said about this state. So ‘persistent’ means prolonged indefinitely. ‘Vegetative’ is an organic body capable of growth and development but devoid of sensation and thought. Now, in this particular state, what are people like? They are lying there, with their eyes open; the eyes move, if you go and bang the side of the bed or kick it accidentally they will jump. Reflex sort of reaction, usually flexion. But they never appear to speak, or attempt to vocalise.
Now, where did this term come from? In 1972 Professor Jennet from Glasgow and Professor Fred Plum published a paper in the Lancet entitled “A syndrome in search of a name”. They reviewed all the literature that was about at that time and the names used then to cover this coma-like state, but after the review they decided that they would call their syndrome “persistent vegetative state” because they felt it described the condition; it is independent of the electro-encephalograms and C.T. scans and the measurement of cerebral blood flow and cerebral metabolism and the low physiological or anatomical abnormalities present.
Cerebral damage
Now, what is the cause of this state? It is due to insult to the brain. Now, what can cause this cerebral insult? It can be trauma, as I’ve mentioned before. A road traffic accident, direct blow to the head as in boxing, or it can be secondary in the sense that somebody jumping from the standing position landing with perfectly straight legs, the shock waves go up into the base of the skull and you get a fractured skull; anoxia, shortage of oxygen to the brain will cause profuse cerebral damage, and it’s not localized to one particular area, it’ll affect the whole of the brain.
This anoxia can be due to anaesthetic accidents, to shortage of oxygen from choking on your vomit if you like – anything like that – coronary disease can produce this. Ischaemia, low blood pressure, haemorrhage from another system causing blood pressure to fall so low that the person faints, but in that faint they will be short of oxygen to the brain. Haemorrhage; haemorrhage again from a stroke can rupture the cerebral blood vessel, the end result being that these people have a sleep-like coma, never again have a recognisable mental function. Jennet and Plum were very insistent that this state, this persistent vegetative state, should never, ever be diagnosed under a year from the date of the insult.
Usually the response is flexor, and it’s a primitive one. You’ll find that if you put your finger into their hands, they may grasp, but the grasp is slow. A baby grasps. It’s a primitive reflex, a primitive response to a stimulus. But again, as I say, they never attempt to speak or to vocalise. But they are able to breathe naturally, they don’t require ventilation, their heart beats normally, they can maintain their circulation.
Get a regime going
Approximately 8% of those who go into a coma never again recover, and their condition passes into the persistent vegetative state. Again as I have said, Jennet and Plum said that you should not diagnose this condition in under a year. So, you’ve got this person who is severely disabled. What does one do in that year? You’re faced with this person probably lying in bed, in a side ward, looking up at the ceiling, what should one do? Well, I’m very much of the opinion that you should, as we did in Putney, get a regime going; a very strict regime of activities that must be done.
Basically, imagine that you’re in bed. Your coma is lightening, you wake up, and you see a tube in front of your very eyes. Well, I think if that happened to me I’d go back into a coma again. I think the very thing first of all is to make that person feel aesthetically normal, be proud of their appearance, because at that moment, if they’ve got a tube in their nose they’re very unacceptable, both to themselves and their relatives. When my father was in hospital he had to have an N.G. tube for twenty-four hours, we forgot to warn my mother about it. She very nearly passed out when she saw him. So it’s the relatives you must consider as well as the afflicted person.
Gastrostomy
So put a percutaneous endoscopic gastrostomy tube in. It’s a very simple, minor operation, done under local anaesthetic. It’s a little tube, a very fine tube, an N.G. tube, in fact, which can go through the skin and direct into the stomach. You can get feeding done that way efficiently without any problems, the pump is there, it’ll work 24 hours a day if necessary, or you can feed them for two hours at a time. One of the main things as well is that you are lessening the nursing time as such. We worked out that with ordinary N.G. tube feeding, it takes over three hours of nursing time per twenty four hours to feed that person adequately, standing by the side of the bed.
So, number one, get feeding going. Also, if they’ve got a tube at the back of their throat, they’ll have difficulty swallowing their saliva. If they have a tube at the back of their throat they’ll have difficulty even trying to communicate or enunciate a word. You try it sometime. It’s very difficult. So, you’ve now got them fed properly. Next thing, try and relieve their contraction; they must be kept moving.
Prevent contractures
They must not be allowed to develop what Tony Bland, I am afraid to say, seemed to have developed in some of the pictures in the newspapers, where he was contracted; he was in the foetal attitude, almost knees up to his chest, his feet up to his buttocks, his arms flexed here. That can be prevented. It may take a lot of skill, it may take a lot of energy from the physiotherapist, but that can be prevented. Right. You’ve got that person (hopefully) in a decent physical state. Next thing, get him out of bed. Get him stimulated.
As Doctor Cole said, his little lad was the spirit of the ward, but he improved by being in a ward with others around him. In a sense he was able to respond a bit more rather than lying in a bed on one’s own. Imagine lying in a bed looking up at the white clinical ceiling all day, every day. Maybe the odd person coming in and saying “Can I wipe your nose for you?” sort of thing; it’s no life for anybody.
So you’ve got them up. Now, immediately you get them up general muscle tone improves. The head will be held. The head will turn most often to stimuli. The eyes will follow the stimuli. But at last you’re increasing the turning; you’re increasing the ability to be stimulated because they can see what’s going on around them, if they can see at all; one just doesn’t know.
Urinary drainage is often a problem. And too often urinary catheters are put in these people. Fortunately men, due to their natural anatomy may not need catheters and they can be treated otherwise and kept dry, but one must always remember that urinary catheters are a foreign body in the bladder and are likely to encourage stone formation, and/or urinary tract infections. So get rid of that tube if you can.
Another factor I forgot to mention in naso-gastric tube feeding; naso-gastric tubes have invariably caused, in our experience, oesphagitis. You can get acute inflammation of the lower end of the oesophagus which in turn can cause bleeding and that can be quite horrendous. So that’s another reason for getting rid of your naso-gastric tube. If that bleeding area heals, you’re likely to get narrowing of the oesophagus and the formation of an oesphaegal stricture, again causing more difficulty passing the next tube. Another reason, again, for getting rid of your naso-gastric tube.
Comatose patient
should never be spoken over
This morning we heard that the comatose patient should never be spoken over; they should always be spoken with, and I think that’s extremely true. You can have lots of fun talking to these folks, and teasing yourself, almost saying, you know. “And do you know what he did to me next? He went and gave me a big kiss. You wouldn’t do that for me, would you?” You know, talk with them, never over them.
Drug therapy; now what drug therapy can you give? One that might ease the amount of muscle spasm that may be present. Muscle spasm is the cause of the contractures. But you must titrate these drugs very carefully, because most of them are sedative. Well, you don’t want a sedated patient. If you’re trying to arouse them, you want somebody who will be able to participate in an activity. Similarly, many of these people who have head injuries of some form are liable to epileptic seizures. I say titrate the strength of the drugs, the dosage, to the response you actually want.
In PVS longer than a
year
Now, we had at the
last count approximately thirty-one people who had been to the Royal Hospital
and had been referred to us in what was called the persistent vegetative state.
Well, by the time they reach us, with relatives often having fought all the
authorities possible to get the funding, they were frequently in their
persistent vegetative state for longer than a year.
However, with the
physical, emotional, psychological and occupational therapy input we have had
improvement overall in their state. We believe that even the 8% who never
recover from a cerebral insult have benefited from the regime of care we carry
out. And the regime of care will help ease the burden of carers and lessen the
overall cost of care of these people; but cost should not be a consideration. It
is the life of these people that is paramount. Their life should be as dignified
as we would want ours.
We do not know who will recover
So, as I say, I look through these thirty-one people all of whom were designated as being in a persistent vegetative state when referred to us, and what are the end results? At least five have died, either with us, or very soon after discharge. One in particular was making absolutely superb progress when this happened; we don’t know why. At least three have managed to “graduate” as we call it, to a disabled person’s college.
One of the lasses who is there at Putney now has got completely flat electro-encephalograms. In other words, she is completely brain dead, but she is now able to communicate using her foot. So that completely contradicts some things that have been said as to whether someone is brain dead or not. Five folks are at home, including Dena’s husband. We did our best to dissuade her, I must admit, but she’s making a jolly good job of it, in her lovely house, and looks so happy. One of the folks who’s at home now is another Hillsborough disaster, but he was treated, and he’s now at home in adapted accommodation with his parents, and everything’s going well. He can sit properly in his chair, he can laugh at times, if he thinks there’s a particularly rude version of a joke.
What I am really trying to emphasise is that we are unable to determine who will recover from cerebral insult, therefore anybody treating someone in the acute state is unable to say, “You’re not going to make it, you’re going to make it, you’re only going to be able to see.” In the acute stage what has to be done must be done, and medics, carers or nurses, their aim is to get that person well. You never know when, if ever full recovery will occur. While there is life there is hope. But when should one cease to treat? Or what should such treatment be? To my mind, hydration and feeding are basic human requirements. It is not treatment as such. And I certainly do not like a naso-gastric tube unless it’s absolutely essential. Alan’s got a percutaneous endoscopic gastrostomy; Dena changes it. You don’t have to be a nurse; you have to be a dedicated carer, and it can be easily done.
Treatment to me means the giving of antibiotics; surgical intervention, if necessary. Feeding is definitely not treatment to my mind, and I think one must always do it. Treatment to me means the giving of antibiotics; surgical intervention, if necessary. Feeding is definitely not treatment to my mind, and I think one must always consider the quality of life of the person you are trying to look after. Thank you.
Dena Tombs: Thank you very
much, Doctor Tudor. I think it’s difficult for people who haven’t
experienced looking after someone who is so severely disabled to sit back and
find out actually what is involved. Our information from the tabloid newspapers
unfortunately can be very misleading. Has anybody got any questions?
Dr. Norris: I think we’ve been a bit slower in this country to start gastrostomy feeding, it’s been going many years in America. For one thing it facilitates the nursing situation where nursing staff are short. I must tell you that at one public school in the South West of England there is a little boy who takes part in all the activities and he has his gastrostomy tube; he has an intestinal complaint. So that it’s almost an every day thing for some people – for that boy, certainly. Doctor Tudor has said with the naso-gastric tube you have difficulty swallowing your saliva, so the practicality is that it’s unpleasant as well, whereas the other tube, the stomach feeding, is not.
Comment:
I am David Price, I represent Headway. I have seen quite a number of patients in
this condition and most of them have been as a result of road accidents and I
was very encouraged in your comment that you cannot tell what is going to happen
at the beginning, and in fact we’ve already heard about Hippocrates earlier
today. Hippocrates also said about head injuries, that no head injury is so
severe that you can despair of the patient. I think that’s something we need
to remember, and I can think of patients who’ve gone on for a year or two,
nobody thought that they’d do well, and certainly for the first few months
they were technically in a Persistent Vegetative State, and yet they’ve done
moderately well; and others, clearly, have died or have kept in the same state,
but I think it’s very important that we should allow time before any decisions
are made. Certainly as far as head injuries are concerned, that time goes beyond
the year Professor Jennet and Professor Plum suggested. I have argued with them
over the years and I have an idea that they are beginning to realise that a year
is too early to be even thinking about making any decisions, and certainly if
any decisions have to be made, and often they don’t, then it may be several
years.
Dr. Tudor: I
can certainly think of one lady, a stroke victim, I think it was three years
from her stroke, and suddenly she was singing one day, and from singing we
managed to change tack to see if she could talk, and eventually before she died
was able to string three to four words together to make herself understood, and
she was delighted with herself.
Question: How long had she
been in that state?
Dr. Tudor:
When she actually died I think she’d been in the post-stroke state at least
ten years.
Mrs. Dena Tombs:
Next we have Mrs. Lilian Sallery who like myself had a relative in the Royal
Hospital in Putney and that’s where I met Lilian. Her daughter Marian is now
back in her part of the country and Lilian is here to recount her story.
Lilian Sallery
The heading for this conference has the word futile twice – I would like to alter this to fruitful, and commence by telling you of the long, hard fight – still unfinished – for our daughter’s life.
She was found in a coma nine years ago – unfortunately, she was alone, her husband having been away for the night – so it is possible that she had been unconscious for between ten and eighteen hours.
She was rushed to hospital, into the I.C.W., and later we were told that the prognosis was grim. She had severe brain damage, and would, if she recovered, certainly be a cabbage, and succumb to the first infection she picked up. To hear your loved one called a cabbage is more than devastating!
Three weeks later, the doctor told us that it would be better to let her – in his words – “Slip away” by removing the Ryals Tube that was feeding her. Now this is very different to removing a life support machine. These cases are breathing, digesting food and, in most cases, hearing. Shocked, we asked how long it would take, and were horrified to learn that it would be about two weeks! We refused permission, though her husband had agreed with the doctor. We were then told to come to terms with our daughter’s condition, and go away to “live our lives”.
To halt the process of decay, the head-injured patient in a coma desperately needs to wake up, and yet no-one had systematically tried to do this.
Movement “only a
reflex”
About three months later, she was moved to a small community hospital, and was expected to die at any time. She was nursed there with exceptional loving care, and, in the expectation that death would soon claim her, consequently little treatment or stimulation was attempted. It was not thought possible that she would survive, though her father and I sat each day, talking to her, playing tapes, etc., but any movement we noticed was classed as only a reflex.
In 1985, our son-in-law asked the doctor who had been in charge of her case to visit her and give his diagnosis. If you will here bear with me, I will read from the report.
On admission to
hospital, she was deeply unconscious, and there were signs of some damage to the
brain. Despite further investigation, we have not come to any conclusion as to
the cause of her serious brain damage. The best theory at present is that she
must have had an epileptic convulsion and suffered respiratory arrest with
subsequent severe brain damage.
The doctor and I are
both of the opinion that she is currently in what amounts to “persistent
vegetative state”. This means that there has been complete and permanent loss
of all her higher functions. There is not, and we believe that there never will
be, any capability for any intellectual function, or that there will be any
substantial or meaningful contact with their surroundings or with her family.
With regard to the
future, I am of the opinion that there will be no improvement from her current
state. As a result, it is very likely that at some stage in the next few years
she will be overcome by some complication and so that long-term survival is not
likely.
The doctor was called in again in 1987, to give a further diagnosis:
My previous
assessment and diagnosis remains unchanged. I am sure that there are no chances
of further improvement or recovery. Further assistance in the way of treatment
programmes or physical aids are not going to alter her current state. She
remains with extremely severe brain damage with complete and permanent loss of
her higher cognitive functions as well as some of her motor functions.
When one gets that message from a doctor, it takes quite a lot of faith to carry on, but we said that as long as Marian could breathe on her own, we would continue to fight for her.
Specialised
stimulation
Over the years, we noticed slight improvements in her awareness of life – and we began to wonder if greater specialised stimulation might be the key to some level of recovery, so we started to look for such treatment, despite the doctor’s assertion that no treatment or physical aids would be of any help.
Three years ago, we had her admitted to the Royal Hospital, Putney, for a three-month assessment. She did so well that they kept her for another three months, and, if I tell you that she went to Putney from North Wales in an ambulance on a stretcher, and returned sitting up in a wheelchair on the train, you will appreciate our delight at the improvement.
She came back to the same wonderful little community hospital, and was again given wonderful nursing care, but nothing else. The physiotherapist, at a case conference that we asked for, refused to give her any physiotherapy, saying that once brain cells are damaged, it is a waste of time. So we started looking for something along the lines of the Royal Hospital, but nearer to home.
Such case a
challenge
Nine months ago, we got her into the Leonard Cheshire Home, Colwyn Bay, where each case is treated as a challenge. Now Marian has physiotherapy twice a day, and all kinds of therapy – even yoga. She leads an interesting and happy life, she knows us, recognises her friends and appreciate the lovely surroundings. She has a quality of life that we never dared to hope for, and gives a lot of pleasure to many people.
Now, that raises the question “What state would Marian be in
now, if she had been receiving this treatment nine years ago?”
You will recall in my opening sentence I used the words “Futile or Fruitful?” The futility has not been in our struggle, but in the lack of facilities to assist the recovery of these cases.
The B.M.A. has for several years advocated the setting up of Intensive Rehabilitation Units in each County – but their availability seems to be in the private sector, which is very expensive, unless you can get a grant, and that is not easy in the present financial climate.
Brain injury is not “glamorous”, and involves sharing the credit with non-medical staff. It doesn’t generate many grants, or knighthoods, so it doesn’t attract the kind of lobby that can persuade politicians to loosen public purse strings.
The government says
that it costs between £40 to £60 million a year to look after these cases
under the present arrangements. Surely this money would be better spent setting
up small intensive rehabilitation units in each County in England and Wales –
4 to 6 beds would suffice, and would help the swift return of most of these
cases to a useful and fruitful life.
The Tony Bland case is, I fear, being used to push a Bill
through Parliament to legalise euthanasia. The very least that this so important
matter should have is a Royal Commission, but this has been refused – is it a
case of “It would take too long – we
must get the wards cleared”?
If this law goes through, you will see the terminally ill, premature babies, sad Alzheimers cases, brain-damaged and mental cases being medically cleansed from our wards – the undying being denied food and water.
I appreciate there are sad cases that require help to ease their pain, but to starve a person to death is barbaric! The law does not allow us to starve an animal to death – surely, with all the medical research going on, one should be thinking of saving and improving life, not terminating it! It would seem that money means more than life itself!
To go back to the medical research, St. Barts. Hospital
Research Department had a slot on television and said that a great deal of
research was being done on the brain-damaged, but unfortunately very few G.P.s
or consultants know of this, and that less than 5% of the brain damaged ever saw
a consultant who thoroughly understood the subject. To give you an example of
how little interest is taken, a lady from Malvern contacted me as a member of
“Headway” – my husband and I started the first “Headway” club in North
Wales. The doctor in charge of her son’s case had told her “It’s not my field, and you are wasting your time.”
I do beg of you to do all that you can to stop this Bill, before we go back to the days of Hitler – “If it’s not perfect, get rid of it!”
It is proposed that at 18 years old, one can make a “Living Will”, with no thought for the future, but many feel very different ten to twenty years later, and, unless they have remembered to cancel it the Will stands.
The law cannot sentence a murderer to death, and yet they are seeking this power over the helpless and innocent.
Our fight has been long, but not futile, but when one reads the B.M.A.’s discussion document – September 1992 – stating that fluids and nutriment can be withdrawn after twelve months, we wonder what would have happened to Marian if this had been in force in 1983!
I would like to mention once again the Royal Hospital and Home – it used to be known as the Royal Hospital and Home for Incurables – the last word has now been removed from the title. In their opinion, something can always be done to improve the quality of life!
I would like to quote the words of the late Lord Cheshire who, when asked about euthanasia, said, “I consider it a gross affront to human dignity, quite apart from a contradiction of Christian faith!”
This is my message to other people like us: if a hospital advises you to let someone in your family die of starvation and dehydration, and you don’t know how to argue back, write to me c/o ALERT.
Dr. Tudor: I’ll just
make one comment. There is a great danger I think that if doctors think they can
make a decision in three months or four months then you get to the situation of
self-fulfilling prophecy. Of course patients will die because you are, in fact,
allowing them to. I’m afraid when I heard your story I felt quite ashamed that
the medical profession hasn’t really an understanding of the fact that they as
doctors don’t know what the outcome is of people who are in coma and you
cannot predict at an early stage.
I’d just like to
make an interesting analogy here. Many years ago, a long time ago I had to do a
special course in mental deficiency and the mental deficiency institutes were
absolutely full of children with Down’s, who were all very mentally deficient,
they would come around you and hardly spoke, and fulfilled the prophecy that
people wrote about them. Now we have them out of there, we have them stimulated,
they go to normal schools and even go to colleges. It’s a rather interesting
analogy that if you leave your so-called P.V.S. patients to adopt the foetal
position and do nothing they do it, but if you stimulate them there is some
hope.
Mrs. Sallery: It’s the
same as leaving them in a side ward; it’s wrong. We’d leave and we could see
Marian looking suddenly sad, and we knew then she was on her own. Nurses would
come in and they’d do their duties, but they hadn’t time; but if you can get
these little units up round the country where they’re specialising in these
cases, we’ve got some hope.
Comment: The Trust I work for provides communication equipment for people who can’t move or speak. But just on a personal note, I would like to support Doctor Tudor and Mrs. Sallery that we never really know. Twenty-seven years ago I gave birth to a child and I was told I would have a cabbage in a wheelchair; did I want it to live?
Without thinking about it my husband and I said, “But of course.” Twenty seven years on, he has recently passed his driving test, has a full time job concerned with Business Studies – there is a classic example.
Mrs. Tombs: I think one of
the problems among the medical profession and the nursing profession is that it
is only a relatively small number who see their patients with this problem, and
so when they’re confronted with it they adopt a negative attitude, a negative
view of life. The problem is that in the current economic climate, everyone’s
taking a very negative view of the economy, so they’re depressed about money,
and everybody’s obsessed with the cost of medical care.
Comment: It’s justified and they should have it by right.
Mrs. Sallery: Talking
about how you should have it by right, Marian is now paying out of her own money
for her treatment at Bellena Cheshire Home. Before that she was at the local
community hospital, where they worked out that it was costing £750 a week for
the basic nursing. She is getting tremendous treatment at the home for £500. So
we’ve relieved the Health Authority of that amount of money, but we cannot get
one penny out of them to help us. That’s it; you’re out and you’re out.
Mrs. Tombs: I will say
though in defence of the medical profession as far as my husband’s concerned,
because we were given substantial compensation for his accident, but the
community, the district nurses, and our G.P. particularly have been excellent in
actually helping us set up our home routine, and have literally turned up and
said, “Well what do you want us to do?”
So again I think it is important to have a positive approach when dealing with your G.P. or whatever when you’re trying to move out of the hospital and into the community environment which is what the government seem to want us to do, that if we as families give out positive thoughts for our patients, then the G.P. and the rest can also get involved in future care. I think it’s quite important to remember that G.P.’s are used to dealing with sick people. The people who come round to see them every day aren’t very well and they need to be made better.
With somebody with
severe brain damage it comes to the point and certainly it happened with Alan,
when he wasn’t ill, he just wasn’t able to look after himself, and it’s
quite a distinction. When treating someone you need to get out of the habit of
thinking “my husband’s ill, he needs better care.”
When Sister Manny took over our ward in the brain injury unit I couldn’t understand why no-one was taking Alan’s temperature, and she said to me, “How often do you take your temperature?” I said, “Well, I don’t.” She said, “Well then. How do you know if you’ve got a temperature?” I said, “When I’m hot.” And she said, “Well, Alan will know when Alan’s got a temperature because he’s going to be hot as well.” I said, “Oh yes.” And it’s simple things like that that actually help a relative cope in that situation and bring the patient round more to normality and trying to live a normal life with everybody else.
* * * * * *
Comment: Mrs. Bottomley
spoke on television last week about the ‘success’ of the NHS and we hear
about all these treatments at various hospitals. More or less what she was
saying was that when you make advances in medicine, you’re increasing the
demand all the time, and this is what we’re doing here; saying what could be
done with PVS patients. Well, I don’t think the government wants people to
know.
Dena Tombs: I don’t really think the question is what can be done for them, although people will obviously want to know that. The question is how to direct society towards accepting disabled people in all different forms, shapes and sizes. It’s just a form of discrimination really when we think somebody’s life is worthless because of their disability, and I think really that’s our point; that’s important.
*
* * * * *
Comment: The prolongation
of life is one of three benefits to be aimed at – the others are improving the quality of life and
reduction of pain. There are many other benefits; I’m not saying this is the
only one, or the primary one in every circumstance, and a dying patient is
certainly a circumstance where the withdrawal of antibiotics is justified, but
I’d say it’s difficult to see how one justifies withdrawing antibiotics in
Tony Bland’s case, when, how can they be futile? Well, possibly, but it’s
more difficult. If he was dying and he contracted septicaemia, that I would see
as justification. Otherwise it’s more difficult to justify.
Comment: We can all
discuss whether we give antibiotics to a patient, whether it’s good, or
whether it isn’t good. But if you don’t give antibiotics there can be a
variety of things possibly to happen. For
one thing, you cannot be certain the patient’s going to die because of not
being given antibiotics.
Comment: Yes,
I fully agree. I wrote out a series of chest infections, in neuro-surgical
patients and showed that as soon as you banned the use of all antibiotics in the
intensive care unit with all patients, you had a fall in the infection rate. And
there is no clear correlation between the antibiotics you give and the
infection. But having said that, certain infections, such as septicaemia, will
respond.
Luke Gormally: I think the
speaker is asking a question which has not in fact been addressed; it’s
perfectly true you might withhold antibiotics because you reach a point at which
you believe that giving them will result in compromising the immune system or
something like that, but I think the question that was being asked was:
“Suppose that was not the case, how do you distinguish between withholding
food with the intention of causing death and withholding antibiotics, when you
do not have the kind of reasons that are being offered?” I understand that
Lord Mustill in his questioning of the various witnesses to the Select Committee
has pressed this particular point.
I have no objection, as a collaborator with John Finnis, to making distinctions in terms of intention and foreseen side effects. But the question is, how can you be justified in withholding antibiotics when, so to speak, your judgement just in terms of the body’s functioning, would be that in this case the administration of antibiotics would in fact clear up the infection. How might you be justified in doing that? I’m suggesting you might be justified simply because you think there is no longer a therapeutic benefit to be obtained. But the fact that it becomes reasonable to abandon what is strictly therapy is not a reason for abandoning ordinary care.
Postscript
The last two years of Marian’s life were happy. Sadly, she died in 1994 after a short illness. Post-mortem examination revealed she had been in a “locked-in state”, perfectly aware of what was going on, though unable to say so. Her parents had been right, all the years they had fought for her. See www.donoharm.org.uk/leaflets/marian.htm for a leaflet on Marian.
The ethic that protects the vulnerable
Dr. Peggy Norris
First I wish to thank all our speakers without whom we could not have held this meeting.
Meanwhile, ALERT has had small red cards printed that carry the message: “ALERT. I do not wish for euthanasia: any deliberate action or omission which is intended to end my life.” Please take some from the back of the hall, carry one in your wallet and give them to your friends.
Secondly, the Doctors’ Federation circulated colleagues requesting them to sign a Declaration that they “will never knowingly administer futile treatment...or would never deliberately end the life of a patient...if advance Directives were given legal force we...would refuse to cause death by starvation or dehydration, and would refuse to ask a colleague to carry out such a practice”. To date we have 800 signatures. Copies of the Declaration and a covering letter are available in the hall.
Here I want to say a special thanks to Professor Peter Millard who spoke this morning, and to Dr. Tony Cole and Professor David Short. They drafted the covering letter. Unfortunately Professor Short was not able to be with us today. At an earlier meeting in the House of Commons he spoke on an aspect of euthanasia being promoted by the Voluntary Euthanasia Society, that is Advance Directives. Professor Short pointed out that one objection to signing Advance Directives is that at the time one signs a Directive one simply does not know how one will feel later on.
These Directives have caused endless problems in the U.S.A.