MEDICAL ETHICS & PALLIATIVE CARE

COURSE MATERIAL FROM A MEETING HELD ON 11 APRIL 2000 AT THE EDUCATION CENTRE, BORDERS GENERAL HOSPITAL

Outline of Ethical Theory
Withholding & Withdrawing Treatment
Consent - A Legal Perspective
Dilemmas in Disclosing Information

WITHHOLDING & WITHDRAWING TREATMENT
Dr Kenneth Boyd, Scottish Director of the Institute for Medical Ethics, University of Edinburgh

EFFICIENT CAUSALITY - MORAL RESPONSIBILITY

B would not have died but for A

• smothering B (MK);
• injecting potassium chloride (yE)
• supplying B with lethal drugs (tobacco, heroin; PAS)
• alleviating B’s distress with opioids or sedatives (2E)
• withholding or withdrawing artificial nutrition and hydration (PVS "no affirmative benefit from treatment’)
• not summoning medical aid; medical negligence
• not sending food aid.

B would not have died but for

• B’s cancer,
• drought in B’s country.
  

ACT/OMISSION

causing death/allowing to die

• mercy killing/not summoning medical aid
• ‘active’ euthanasia/not giving artificial feeding
• withdrawing/withholding
• removing/not replacing (or not refilling)

ORDINARY/EXTRAORDINARY

obligatory/discretionary

• simple/complex
• natural/artificial
• usual/unusual
• noninvasive/invasive
• inexpensive/costly chance of success reasonable/futile
• benefits and burdens
• proportionate/disproportionate

FUTILITY

• No longer possible to preserve life: simpler.
• No longer possible to preserve an acceptable quality of life (or acceptable balance of burdens and benefits): more difficult.
• Certainty of diagnosis/prognosis with/out treatment (e.g., elderly with multiple pathology)?
• When patient lacks decision-making capacity/living will:
• How decide what is acceptable?
• Who decides what is acceptable?

INTENTION

Double Effect

Withdrawing means of preserving life is not killing if means are medically futile

and/or

significantly burdensome for patient

and

if aim is not death but removal of burden

Conditions

1. Good effect intended
2. Bad effect unintended but inevitable
3. No less drastic means to end
4. Agent sincere.
MOTIVE

ACT OF FEEDING

Symbol of care and compassion; cf hygiene care: obligatory

or

Matter of clinical judgement; cf CPR: discretionary ex emergency

Moral interpretation: ACT alone insufficient; cf
act of sexual penetration - rape/lovemaking/in private or public
cutting someone with a knife - criminal assault/surgery/skill
INTENTION + RELATIONSHIP + CONTEXT

WITHHOLD/WITHDRAW (PEG) WHEN

1. Futile from a medical point of view.

2. No benefit to patient.

3. Burdens to patient outweigh benefits.

4. Burdens to others outweigh benefits?

If uncertain, trial, but with

PVS, DEMENTIA, STROKE

BMA

• No clear and comprehensive guidance on withholding and withdrawing life-prolonging treatment from patients with no prospect of recovery from very severe brain damage (except legal rulings related to PVS) or from progressively deteriorating terminal conditions.

• ‘With some conditions, such as advanced dementia or very severe stroke, a practice has developed where, in some cases, a decision is made that life-prolonging treatment, including artificial nutrition and hydration, is not a benefit to the patient and should not be provided or continued. The BMA does not believe that these cases should routinely be subject to Court review but considers that there should be in place standard policies and guidance outlining the criteria and steps to be followed in reaching these decisions.’ [ix]

• ‘the BMA can see no reason to differentiate between decisions for patients in PVS and those for patients with other serious conditions where artificial nutrition and hydration is not considered to be a benefit, which are currently governed by established practice without the need for legal review.’ [54]

• the goal of medicine is not to prolong life at all costs, but to benefit the patient’s health with minimum harm.

• the point is not whether withholding or withdrawing treatment can be justified, but whether the benefit of treatment to this patient justifies making or continuing with this intervention.

•to reduce legal uncertainty, all decisions to withhold or withdraw artificial nutrition and hydration (including but not restricted to those involving patients with PVS, which in England but not Scotland require legal review) should be subject to formal clinical review.

BMA Withholding and Withdrawing Life-prolonging Medical Treatment BMJ Books 1999.

INTENTION

There are objective kinds of action, some right, some wrong, some indifferent in themselves.

Where is the real case for euthanasia unless in an intense regard for individual expression blind to the general definitions of law?

There are real kinds which we must discover and respect, kinds of things and kinds of action. Moral judgements are best confined to these actions considered in themselves and need not extend to private motives. This also is the guiding rule in English law, which judges the intentions of a criminal from the natural consequences of his action and does not probe into his private sinfulness.

MOTIVE

Let us suppose that a man has had his head half cut and it is hanging loose from the neck. He signs to passers-by and requests them to kill him so that he might be spared the suffering. Most passers-by, let us suppose, take no notice and go on. One, however, stops and looks at the man, sees his suffering and realizes that his death is certain. This person, then, may surely severe the head completely and end his suffenng. This, too, is non-violence. It is so because the passer-by was not prompted by any selfish motive in what he did.

We hear in our country many persons advance such arguments to justify killing, but they are insincere; those, for example, who kill snakes are cowards. They are afraid of dying themselves, and their only thought in killing a snake is to save themselves from being bitten by it...

HOSPICE -USA

Food and water are certainly significant symbols, but the social experience associated with the giving and receiving of food and water may be equally important. The patient receiving intravenous fluids, lying alone in a hospital bed, is having a much less rewarding experience than the patient in a personalized room being given ice chips by a concerned caregiver. Both are receiving water, but there are few other similarities.

Many people feel that "food is life". A strong emotional attachment to food is sometimes expressed by family members, either through words or actions. Our experience has shown that artificial feeding up until death generally increases patient discomfort, but caregivers need to be tactful and nonjudgemental when discussing this with the patient and family. Involving them in a discussion of the benefits and burdens can allow all involved to determine their real concerns about feeding. Frequently family members express their inability to cope with their impending loss by demanding force-feeding. Rather than disagreeing with their demand for feeding the patient, we offer suggestions as to what might be more appropriate and less disturbing for the patient.

P Schmitz, M O’Brien ‘Observations on Nutrition and Hydration in Dying Cancer Patients’ in Lynn J (ed) By No Extraordinaiy Means Bloomington: Indiana Univ Press 1986: 34-36.

SOCIAL CONSEQUENCES: USA

What happens to movements or practices when they are taken out of the hands of the first pioneers, who act thoughtfully and carefully after due deliberation, and are put in the hands of large numbers of people who may not approach them with the same care? What happens when you turn something that was a minority movement into a mass movement? In this case, what if caregivers withhold food and water thoughtlessly, carelessly, and incorrectly, thereby causing much suffering and debasing a loyalty and duty to a large number of seriously ill people? That could well happen, as easily as other forms of abuse periodically reported in nursing and chronic care centers.

Daniel Callahan ‘Public Policy and the Cessation of Nutrition’ in Lynn J (ed) By No Extraordinaiy Means Bloomington: Indiana Univ Press 1986:63

Many nursing homes refuse admission to patients if they are unable to maintain adequate oral intake and do not have a feeding tube in place. Similarly, state regulatory agencies conducting quality assurance audits of nursing homes may use criteria such as weight maintenance to evaluate nutritional services for residents. These evaluative criteria generate pressure to utilize tube feedings... The problem is that tube feeding has become a widely accepted medical practice in the care of demented older patients without adequate validation in clinical research.

T F Ackerman ‘The Moral Implications of Medical Uncertainty: Tube Feeding Demented Patients’

fAGS 44:1265-67, 1996.

JUDGEMENT

If understanding in general is to be viewed as the faculty of rules, judgement will be the faculty of subsuming under rules; that is, of distinguishing whether something does or does not stand under a given rule. General logic contains, and can contain, no rules for judgement... If it is sought to give general instructions how we are to subsume under these rules, that is, distinguish whether something does or does not come under them, that could only be by means of another rule. This in turn, for the very reason that it is a rule, again demands guidance from judgement. And thus it appears that, although understanding is capable of being instructed, and of being equipped with rules, judgement is a peculiar talent which can be practised only and cannot be taught.

THE PAUSE

experienced when one has made a reasoned moral decision with mortal consequences [is] fuelled by the intuitively felt moral weight we attach to life and death decisions. The ability to heed such complex intuitive responses is fundamental to the caring professions.

alerts us to the seriousness of the decision being made and asks one seriously to consider any lingering misgivings or unresolved questions that have perhaps been jostled to the back of ones mind.

can indicate that the statable reasons and the principled ethical decision that results may not have done full justice to what is at stake in a particular decision.

TWO KINDS OF QUESTION

"We face two types of problems in life. One kind of problem provokes the question ‘What are we going to do about it?’ The other kind poses the subtler question ‘How do we behave towards it?’"

The first type of problem demands relatively technical, pragmatic, and tactical responses that will eliminate the difficulty; the second poses deeper challenges which no specific policy, strategy or behaviour can dissolve. The problem will persist... it demands a response that resembles a ritual repeated more than a technique...

The appropriate question... is not "What are we going to do about it?" but "How does one rise to the occasion?"

CONSENT - A LEGAL PERSPECTIVE
Dr Colin Gavaghan, Institute of Law and Ethics, University of Glasgow

CASE PROFILES

1. In re F (mental patient: sterilisation) [1990] 2 AC 1

This case involved a 36-year-old mentally handicapped woman referred to throughout as F. The court heard that F, who resided as a voluntary in-patient in a mental hospital, had the mental age of a small child, but had nonetheless formed a sexual relationship with a male patient. The hospital staff considered that she would be unable to cope with the effects of pregnancy and giving birth and subsequently looking after the child, and that ‘In these circumstances it would, from a psychiatric point of view, be disastrous for her to conceive a child.’ (at p53)

Other forms of contraception were considered, but deemed unsuitable. Furthermore, it was considered undesirable that F’s freedom be restrained in order to prevent any sexual activities. Her carers therefore decided that it would be in her best interests to be sterilised. F’s mother agreed with this recommendation, but in view of the uncertainty surrounding this area of law at the time, sought a declaration from the court stating that such a procedure would not be unlawful.

At first instance the judge granted the declaration. However, the Official Solicitor, appointed by the Court to represent the interests of F herself, appealed. When the Court of Appeal upheld the judge’s order, the Official Solicitor appealed again, this time to the House of Lords. Their Lordships noted that the court possessed no jurisdiction to give or withhold consent to such a treatment. The most that their Lordships could do was to issue a declaration stating that a proposed operation was lawful

This is potentially quite an important distinction. The court was acknowledging that it could not actually authorise such treatment. If the proposed treatment fulfilled the common law criteria for non-consensual treatment, then it would be legal with or without court approval. If it did not, then the treatment would be unlawful, and no court approval could render it otherwise.

In the event, the Lords declared that the treatment was lawful. While some of the issues that fell to be considered in this case were particular to the practice of sterilisation, the House of Lords did offer some more general guidance regarding treatment without consent.

Their Lordships started out by acknowledging the general principle that any unauthorised touching is a trespass. However, the need for non-consensual treatment to be allowed in certain circumstances was acknowledged by Lord Bridge, when he stated that:

The circumstances within which the requirement for consent could be dispensed were perhaps best expressed by Lord Goff, who identified two criteria that must be fulfilled in order to justify such treatment:

Treatment that fails to fulfil either of these conditions is, quite simply, not legally permissible in the absence of consent.

In the present case, the Lords were unanimous is agreeing that the proposed sterilisation operation satisfied these criteria. The appeal was therefore dismissed, allowing the sterilisation operation to go ahead. The importance of this case lies in the fact that it was the first time that the House of Lords had spelled out precisely what conditions had to be met before non-consensual treatment could be provided.

2. In re C (Adult: Refusal of Treatment) [19941 1 WLR 290

The patient, known as C, was imprisoned in 1962 for stabbing his ex-partner. While serving his sentence, he was diagnosed as suffering from chronic paranoid schizophrenia. After treatment with drugs and electro-convulsive therapy (ECT), his condition was deemed to have improved sufficiently for him to be accommodated on the open ward of a parole house.

In 1993, medical staff diagnosed gangrene in C’s foot. A consultant vascular surgeon who examined him formed the opinion that he would die immediately if the leg was not amputated below the knee. C refused to consent to the amputation, arguing inter a/ia that (1) he had pursued ‘an international career in medicine during the course of which he had never lost a patient’, and in his capacity as a world renowned surgeon, disagreed with the prognosis offered by the consultant; (2) he ‘expressed complete confidence in his ability to survive his present trials aided by God, the good doctors and the good nurses’; and (3) that he would in any event ‘rather die with two feet than live with one.’ C sought an injunction restraining the hospital from amputating the leg without his express consent.

In C’s case, doubts quite clearly existed as to whether he possessed the requisite mental capacity to allow to him to make a valid refusal. In considering this question, Thorpe J. acknowledged that C experienced ‘grandiose and persecutory delusions’; that his mental capacity was impaired was not in doubt. The question, however, was ‘whether it has been established that C’s capacity is so reduced by his chronic mental illness that he does not sufficiently understand the nature, purpose and effects of the proffered amputation.’ (at p295) In making his determination, Thorpe J. identified three constituent elements of the decision-making process:

Although C’s general capacity was held to have been affected by his condition, Thorpe J was ‘satisfied that he has understood and retained the relevant treatment information, that in his own way he believes it, and that in the same fashion he has arrived at a clear choice.’ (at p295)

The injunction was therefore granted. The court also felt that there was no reason why the injunction should not extend into circumstances which may occur in the future. C therefore received a guarantee that his leg would not be amputated without his consent, even if or when he was not lucid now or in the future. This is an aspect of the case that is of considerable significance in relation to anticipatory decisions.

For present purposes, the important points to emerge from In re C relate firstly to the fact, already stated in the preceding section, that for legal purposes a finding of competence is specific to the particular decision that must be made. C was mentally disordered and was probably incompetent for certain purposes. However, it was felt that he possessed the requisite capacities to be able to understand the nature and likely consequences of this particular decision. The other important lesson that we can learn from In re C relates to some of the particular capacities that the court will look to in making its decision about competence.

3. In Re T (Adult. Refusal of Treatment) [1993] 3 WLR 782

Following a traffic accident, T, who was 34 weeks pregnant, was admitted to hospital. T was raised by her mother, a devout Jehovah’s Witness, but it was accepted by the sect itself in a statement to the press that T was not herself a Jehovah’s Witnesses. After she had entered hospital, T was given several doses of pethidine. The legal and ethical difficulties posed by the case began when T’s mother arrived at the hospital, and conversed privately with her daughter. The precise content of that conversation is unknown, but shortly thereafter, ‘T told the staff nurse that she did not want a blood transfusion, that she used to be a Jehovah’s

Witness and that she still maintained some beliefs.’ (at p789) The staff nurse sought to ‘pacify’ T, reassuring her that no such transfusion would be necessary.

Later that evening, T went into premature labour, and a decision was made to perform a Caesarean section. At this point, T reiterated her opposition to a blood transfusion, both to the midwife and to the doctor and signed a form refusing a blood transfusion should one be required. The child was delivered stillborn, and T’s condition deteriorated to such an extent that, but for her advance refusal, a transfusion would have been given. The consultant anaesthetist placed T on a ventilator and administered sedative drugs. However, in view of her previously stated objection thereto, the medical team felt uneasy about administering the blood transfusion that would eventually be necessary if T’s life was to be saved

Four days after being admitted, T’s father, supported by her boyfriend, applied to the court for a declaration that it would not be unlawful for the hospital to administer a transfusion in these circumstances. The judge decided that, due to her condition and the effect of the narcotic medication, she had not been fully rational when she signed the consent form. A transfusion was duly given. The Official Solicitor, acting on T’s behalf, appealed against this decision.

Before considering the merits of this particular case, Lord Donaldson MR in the Court of Appeal stated the general rule that every adult has the right and capacity to decide whether to accept or decline treatment, even where the refusal would lead to permanent injury or death.

This applied not only to a contemporaneous decision, but equally to an anticipatory choice ‘if clearly established and applicable in the circumstances.’ (at p787) This statement is perhaps the main authority for the proposition that advance treatment refusals (including ‘living wills’) can be binding on doctors at common law. The question before the court on this occasion was as to whether T had validly exercised this right in the present circumstances.

In T’s particular case, it was held that a number of factors combined to vitiate her purported exercise of autonomy. The influence of T’s mother was held to have been such a factor. Butler-Sloss U felt that in T’s case there was

In making their determination, Lord Donaldson held that doctors should consider two factors Firstly, ‘the strength of the will of the patient’ will be relevant;

The second important factor is ‘the relationship of the "persuader" to the patient.’ In this latter respect, Lord Donaldson singled out the relationships between parents and children, and between spouses as being particularly strong examples, where the degree of influence exerted may be expected to be considerable.

Serious doubts were also expressed as to whether T had been aware of the potentially fatal consequences of her refusal. She had been reassured that transfusions were rarely required in such circumstances, and, in response to her questioning, told that substitute treatments would be available — an answer which Butler-Sloss U described as ‘erroneous’. Lord Donaldson stressed that while there did exist a prima facie right to refuse even life-preserving treatment, ‘If the factual situation falls outside the scope of the refusal or if the assumption upon which it is based is falsified, the refusal ceases to be effective.’ In such circumstances, doctors

The appeal was therefore rejected.

4. Airedale NHS Trust v Bland [1993J 1 All ER 821

In April 1989, Tony Bland sustained severe chest injuries after being crushed at Hillsborough stadium disaster. As a result of these injuries, he sustained permanent hypoxic damage to the cerebral cortex, leaving him in a Persistent Vegetative State. This meant that, while the more resilient brain stem was still intact, enabling him to breathe independently and react in reflex manner to stimuli, Bland was not cognitively aware; the brain damage had rendered him insensate. Furthermore, EEG and CT scans revealed that huge areas of the cortex had been destroyed, leaving no room for the possibility that he would ever recover consciousness. His condition was such that he had to be fed through a nasogastric tube.

The consultant in charge of Bland’s care, together with his family, formed the view that it was appropriate to discontinue feeding and other medical treatment designed to prolong life. Airedale NHS Trust therefore applied to the Family Division of the High Court, seeking a declaration that they might lawfully discontinue all life-prolonging treatment.

At first instance, Sir Stephen Brown authorised the attending physicians to discontinue all life-sustaining treatment. Having considered the evidence about the extent of the brain damage, and the impossibility of any improvement, he formed the view that withdrawal of treatment would in fact be in the patient’s best interests.

The Official Solicitor lodged an appeal, contending that withdrawal of lifesustaining treatment would in fact constitute murder. However, the Court of Appeal employed very similar reasoning in arriving at the same decision. Sir Thomas Bingham, MR, described graphically the ordeal that he considered Anthony Bland to be enduring:

A final appeal was heard before the House of Lords. They looked in some detail at the question of whether someone in Tony Bland’s condition could really be said to have any interests at all. Lord Mustill expressed scepticism as to whether any decision could be justified as being in Bland’s interests:

If Lord Mustill’s view, that it is meaningless to attribute any interests to the permanently insensate, were correct, it could not be said to be in Bland’s best interests to withdraw treatment. Equally, it could not be in his best interests to continue treatment, simply because he does not possess any interests of any kind. In such a situation, how could the best interests test be used to arrive at a decision?

The House of Lords circumvented this obstacle by taking a negative view of the best interests test, a view explained by Lord Goff in these terms:

Similarly, Lord Browne-Wilkinson held that

In the opinion of the House of Lords, then, the onus does not lie upon the doctor to show that it is in the patient’s best interests to withdraw or withhold treatment. Rather, for non-consensual treatment to be justified, it is for the doctor to show that initiating or continuing that treatment is in the patient’s best interests; if he cannot, then the justification for providing the treatment is gone.

DISCUSSION SCENARIOS

1. Cassie, a 29-year-old woman, is in the throes of a long and painful, although relatively uncomplicated labour. During her pregnancy, Cassie has discussed her ‘birth plan’ in meticulous detail with her doctor, stating quite clearly her intention to forego any painkilling medication; she often stated that she wanted the birth to be as ‘natural’ as possible However, when faced with the awful reality, Cassie has undergone something of a vo/te face on that issue, and is now screaming for any and every drug on offer However, Cassie’s husband (a lawyer) is present, and he insists that no such medication be provided He explains that he and Cassie discussed precisely this situation, and insists that she made him promise not to allow her to have medication in such circumstances, even were she to ask for it He argues that her current demands are not those of ‘the real Cassie’, that she is merely ‘a slave to the pain,’ and that she will be enraged after the labour is over if she is given analgesia now

2. Rick is admitted to Accident & Emergency having suffered a seizure as a result of which he temporarily stopped breathing. The medical staff ventilated him at the time, but, although still unconscious, he is now able to breathe independently again While searching for identification, a living will is found in Rick’s wallet This explains that he suffers from Garland’s Syndrome, a neuro-degenerative disorder that is probably responsible for the seizures The living will states that since the disease is incurable and the prognosis terminal, Rick does not wish to be resuscitated if he suffers an attack of apnoea. The medical staff therefore decides not to ventilate Rick if he undergoes another seizure while unconscious.

However, the SHO takes it upon himself to contact a neurologist friend, and she tells him that an experimental treatment for Garland’s Syndrome has been yielding quite promising results. The neurologist informs her friend that Rick’s present state of unconsciousness is likely to be only temporary, and she feels that he should be kept alive until that time, whereupon he can be offered the new treatment. The

SHO, however, is worried. The advance directive states very clearly and unambiguously that Rick does not want to be resuscitated, and he is sufficiently aware of their legal status to be concerned about ignoring such a clear instruction

3. Sal, an eccentric but highly educated 40-year-old academic, is found barely able to move, doubled up in agony in her West End flat. Her friends rush her to hospital, where she is diagnosed as suffering from a life-threatening bacterial infection She is provided with analgesic medication to bring her pain under control, but the infection is still likely to be fatal unless treated with antibiotics. Sal, however, refuses this treatment Sal’s condition, although life-threatening, is not immediately life-threatening, so her carers are afforded the luxury of discussing the matter with her in some detail. During these discussions, Sal articulately and passionately sets forth her views that antibiotics are part of a technocratic conspiracy against Nature, and that their use will bring forth all manner of cataclysmic disasters She also expresses her faith in the human body’s ability to ‘peacefully coexist’ with other life-forms, including bacteria. She states very clearly that she does not wish to be given antibiotics in any circumstances, even although her life may appear to depend on such treatment. The medical staff treating Sal are frustrated by their inability to administer what would be a fairly simply cure for her illness, and are reluctant to allow her to die on the basis of her (as they see it) ‘mistaken and irrational’ beliefs about antibiotics

4. Jed is admitted to A & B after being involved in a road traffic accident. He has sustained massive intracranial and other internal injuries, and the medical staff form the opinion that, even if they were able to maintain his life in the short term, there is no prospect of his regaining consciousness. They therefore decide not to ventilate Jed. However, a document found in Jed’s wallet, purporting to be a binding advance directive, instructs that ‘everything possible’ should be done to preserve his life whenever possible.

DILEMMAS IN DISCLOSING INFORMATION
Bryan Vernon, Lecturer in Health Care Ethics, Department of Primary Health Care, University of Newcastle upon Tyne

Why tell the truth?

Difficult cases

This is a Phase I Trial

She will commit suicide...

How long have I got, Doctor?

What about reflexology?

If only

Please don’t put AIDS

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