This article appears in the February 1999 edition of the Catholic Medical Quarterly
No Man is an Island
Some Thoughts on Advance Directives
Delivered At CBPP Conference at Royal Society of Medicine, November 7th, 1998
No Man is an Island
My aim is to explore the subject of advance directives, and discuss their advantages and disadvantages as seen through the eyes of a Consultant geriatrician.
Advance directives that are legally binding have not yet become part of the medical scene in the United Kingdom; but the threat is on the horizon : we cannot run away and hide from it. And so we must peer through the glass darkly to catch a glimpse of what could lie ahead.
John Donne wrote "No man is an Island, entire of it self ..... Any man's death diminishes me. Never send to know for whom the bell tolls; it tolls for thee."
The Quest for Autonomy
Central to the question of advance directives is the concept of personal autonomy : the freedom of choice of a man or a woman to make decisions about their own life - how they lead it, and whether they use it constructively or destructively. In the eyes of some, this demand for freedom of choice about life has extended to a demand for freedom of choice about their mode of death. It has become a demand from some quarters that doctors should engage actively in hastening death, by act or omission, at the request of the patient. It has become a campaign to legalise euthanasia, or doctor-assisted suicide.
Having failed to get direct changes in legislation through the British Parliament, some people are now seeking resort to indirect means of achieving their ends, through legally binding advance directives. There are those in high places who claim that advance directives have nothing, absolutely nothing, to do with euthanasia or assisted suicide. The British Medical Association (BMA) Code of Practice states this at the outset. The Code simply "reflects good clinical practice in encouraging dialogue about individuals' wishes concerning their future treatment". That is the official view from a BMA steering group with heavy legal representation. (1) So why are so many people concerned about advance directives in the context of euthanasia? Let me explain.
Firstly there is an historical link, Living wills or advance directives were devised in 1967 by the Euthanasia Education Council, to shape gradually public acceptance of euthanasia in USA. Later, President Carter was advised that "The cost saving from a nationwide push towards 'Living Wills' is likely to be enormous."(2) In other words, if people die of their illness, they are not a financial burden on the state. A consequent Federal Law, that took effect in 1991, required "that every patient admitted to any hospital, for any reason, be asked if they want to plan their death by filling out a living will."(3)
Secondly Living wills are greatly favoured by the Voluntary Euthanasia Society in the United Kingdom. The Voluntary Euthanasia Society form for advance directives, states "I wish it to be understood that I fear degeneration and indignity more than I fear death."(4) This message of fear comes over time and again in discussions about euthanasia. Fear of illness, fear of disability, fear of loss of control, fear of rising health costs. Fearful people see death as an escape route. Legislation should not be based on fear, neither should medical practice.
Publicity about patients with a permanent vegetative state, arising from the Bland case and others, coupled with rising numbers of old people who survive in a demented state, has led to understandable public anxiety. Yet the chances of having a permanent vegetative state are slim. In 1992 there were about 1500 such patients in the whole United Kingdom, some wrongly diagnosed. The chances of developing Alzheimer's disease, or suffering a stroke are much higher. There are about 300,000 people with Alzheimer's disease in the UK approximately 7% of people aged between 70 and 90. Looked at another way, 93% of people in this age group are unaffected. Strokes affect 100,000people a year in the UK, and are the third highest cause of death.
Much of the clamour for advance directives comes, I believe, from a fear of being physically and mentally incapacitated and entirely dependent on others. We recoil from seeing ourselves bed-bound and tube-fed. We want to retain control over our lives, we want to be forever clear-headed, lithe of limb, young at heart. Perhaps we have become a Peter Pan society, youth orientated, intolerant of disability and old age. But the fact is that we are all entirely dependent on others in infancy, and many of us find ourselves dependent again if illness or accident strike, and old age wearies us. The older we get, the greater the risk of being "sans teeth, sans eyes, sans taste, sans everything!!."
Paul Rowntree Clifford, an octogenarian theologian, writing about disability, said "There are many compensations, such as time for reflection ... and still more for learning dependence on other people, and discovering how kind and helpful others can be, when they see you need assistance . . .... He learnt that "pride in one's own ability to cope with life is an illusion ... we are, from first to last, dependent on one another, and ultimately on God."(5)
Clifford highlights the importance of the loving care of neighbours. and friends, as well as the need for physical care and sensitive medical care. He was full of admiration for the care his wife had in a hospice, saying that her last five weeks were among the happiest in her life. Concern that good medical care and loving friends will not be available for us in the future, may be another reason for the current interest in advance directives. We must ensure in our society that these fears are groundless.
What Are the Possible Advantages of Advance Directives?
These are summarised below.
Advance Directives, Apparent Advantages
- Sense of autonomy
- Sense of control over fate
- Doctors' awareness of your views
- Reduced burden on health service
- Possible economic advantages
Advance directives, at first sight, may appear to be harmless - even perhaps a good idea. After all, doctors need to know whether patients wish to be treated, and how far they would like to go with invasive technical procedures that may sustain life. Doctors must have the consent of the patient for any treatment undertaken, for to treat without consent constitutes an assault in law. What could be simpler than to give consent in advance? Well, I'm sorry to say it is not that simple.
The Problem of Consent
Truly informed consent may be difficult to obtain even when a person is compos mentis, for patients differ in the amount of information they can handle or wish to receive. Truly informed consent, given by a person, when compos mentis about some hypothetical situation that may render them non-compos mentis at some time in the future, is even more problematical.
Individuals can only make reasonable decisions if they are well informed about what can be done in a given situation. Much time could be taken helping patients make advance directives. Is this an appropriate use of medical resources?
Most patients cannot possibly be aware of all the medical implications of advance directives, nor can they predict what misfortunes will befall them or how medical knowledge will advance in the years ahead. The disease they so much dread may be, curable by the time it afflicts them. Will they have kept their advance directive up to date? - or will it be lying there, like an antiquated time-bomb, rusting in a bottom drawer until the day of detonation arrives? Should doctors of the future be compelled to honour directives written umpteen years ago? The answer is probably not.
Some Legal Considerations
The House of Lords Select Committee on Medical Ethics, decided that "it could well be impossible to give advance statements, in general, greater legal force, without depriving patients of the benefit of the doctors' professional expertise, and of new treatments and procedures which may have become available since the directive was signed."(6)
The Law Commission draws a distinction between advance expressions of views and preferences, and advance decisions.(7) In my view an advance directive, be it a refusal or a request for treatment, may be a useful indication of the patient's wishes, but it should not be legally binding. The House of Lords' Select Committee saw no need for new legislation.
Mentally competent adults are entitled to refuse treatment even if by doing so they will die. An advance directive that enables a person to refuse life-sustaining treatment could have fatal consequences. Advance directives could become instruments for passive euthanasia, or requests for doctor-assisted suicide. A doctor must never be put in the position of having to become an accomplice in euthanasia or suicide by act or omission. Advance directives that are clearly suicidal in intent should not be legally binding.
According to Finnis (8) "The law firmly and rightly holds that those who have undertaken to provide treatment or nourishment are not absolved from their duty by the patient's adamant refusal, if that refusal is either incompetent or unlawful. A refusal which is motivated by suicidal intent is unlawful, even though suicide itself is not a criminal offence; that is why assistance, and agreements to assist, in suicide are criminal offences."(8)
The legal profession tends to get involved in medical decision making, when difficult decisions have to be made about patients who are mentally incompetent. Much attention has been given to the issue of withdrawing tube-feeding from patients with a permanent vegetative state (PVS): all such decisions have to go through the Courts. Few people realise that doctors make irreversible treatment limiting decisions frequently, in patients who do not have PVS. Some have severe strokes, others Alzheimer's disease or brain damage following accidents. By no means all are insensate, yet in most cases the courts are not involved. Society still trusts doctors to act in their patients' 'best interests': without this trust we cannot practise our profession. There are however, occasions when patients need the safeguard of a second opinion. Sadly, in addressing the legal issues, the draft Mental Incapacity Bill seems to concentrate on treatment limitation rather than treatment initiation. The whole thrust of the debate is negative and sepulchral.
Doctors frequently have to initiate treatment for the benefit of patients who are mentally frail, confused and unable to give informed consent for a number of reasons.
When treatment is urgent, the legal justification for providing treatment without consent is the principle of necessity. Treatment is "necessary" if it is in the "best interests" of the patient that is, if it is carried out either to save their life, or to ensure improvement, or to prevent deterioration in their physical state. (9)
It is worrying that the Law Commission draft Mental Incapacity Bill appears to redefine "best interests" in such a way that considerations such as life and health are excluded. This is a dangerous development, one that should be resisted.
Many Patients Have Reversible Mental Incapacity
Doctors must look for such treatable causes of confusion as infections, heart failure, subdural haematomas and so on. Treatment of such conditions can restore the mental state to normal. If a doctor is prevented from treating confused or unconscious patients because of an advance directive, many will be condemned unnecessarily to permanent disability or death.
In one study from the University of Washington in Seattle, USA, the death rate in older people, who took part in an active exercise programme, was greater that the death rate in non-participants. The reason for this was that all participants had signed advance directives! It wasn�t the exercise that carried them off, but non treatment of intercurrent illness. The authors commented that "Advance directives contributed to excess deaths, indicating the success of the autonomy intervention". (10) Quod erat demonstrandum!
There are provisions in the draft Mental Incapacity Bill to enable persons given continuing power of attorney to take treatment-limiting decisions on behalf of mentally incapacitated adults. At present their powers apply to financial matters only.
Clearly a person given this authority should not stand to gain financially from the patient�s death, nor have any managerial authority in the institution where the person is cared for. Relatives views should be considered with care and sensitivity before treatment is withheld.
When it comes to allowing a person to die, the American Medical Association insists on the following conditions (11) :
The life of the body is being preserved by extraordinary means.
There is irrefutable evidence that biological death is imminent.
The patient and/or family consents.
We all recognise that a time may come when some patients are beyond help and should be allowed to die. However, decisions to withdraw or withhold treatment, whether made by doctors or proxy decision makers, should not be taken with the sole intention of causing death. Clough was right.
"Thou shalt not kill; but needst not strive officiously to keep alive."
No man is an island
Advance directives could undermine the morale of the medical profession, and other staff in the health service. When beds are scarce and staff over stretched, patients who refuse the correct treatment and do not want to live, will receive scant attention. Why should doctors have a duty of care to attend them? You don�t call in a plumber and then say "Oh by the way, I want the system to drain dry, and while you are here, can you sabotage the mains?" The plumber, if he had any sense, would go on to another job.
If you value a medical profession that is on the whole kind, well informed and professional, do not ask doctors to withhold their skills and suspend clinical judgment to satisfy the self-destructive urges of their patients, or to pander to utilitarian philosophers in the corridors of power.
Alzheimer s Disease
Perhaps the illness that people fear most, that makes them reach for their pens and sign an advance directive, is Alzheimer�s disease or senile dementia. Most of us fervently hope that we will not find ourselves mentally disabled by that dread disease, and stacked away in a nursing home - "ware housed", to use the ghastly phrase that has crept into management terminology. Yet people with dementia are still people. Loving relatives or carers, with time to listen, empathy and knowledge of the person�s background, may be able to communicate with severely demented people when professionals fail. I would urge you to read a book by Malcolm Goldsmith 'Hearing the voice of people with dementia.(12) Demented people may slowly fade out of human contact, but they must never be snuffed out like a candle.
The spectre of tube-feeding should not arise in Alzheimer's disease. Few people would consider tube-feeding a person in the terminal stages of dementia who can no longer drink or communicate. They might, in any case, in their confusion, pullout drips or tubes, rendering treatment impossible. However, great care must be taken to avoid therapeutic inertia simply because a patient is a bit confused, difficult and elderly. An advance directive in such a situation could be counter-productive.
Terminal Cancer need not be frightening. Very few people, given access to skilled care, experience troublesome pain. During my work as a Consultant Geriatrician I saw many patients slip away without pain, despite widespread cancer. I remember, in particular, a woman with kidney cancer. Her pain was troublesome initially, but we controlled it with a morphine infusion and maintained hydration for two weeks with intravenous fluids until she died. She was able to speak, and was calm and conscious throughout. She had none of the troublesome symptoms that can arise when artificial hydration is withheld. Thank goodness she had not written an advance directive. Instead she trusted her doctors to act in her best interests: we did.
The British Geriatric Society has pointed out, "....most patients assume that an advance directive applies solely to non-intervention in terminal illness. They do not appreciate that it would lead to non-treatment of a curable disease. In consequence, misapplied advance directives could cause patients to suffer a lengthy, painful, degrading bed-ridden existence - precisely what they sought to avoid. Whereas, without the advance directive, they could have been rehabilitated to a satisfactory lifestyle."(13)
Adverse Effects of Dehydration
Those who write advance directives stipulating that artificial hydration (AH) must not be given, risk experiencing all the adverse consequences of dehydration. (14) (15)
Dehydration can cause unpleasant symptoms, and if untreated is fatal. Death from dehydration is a lingering death that can be unpleasant for both patient and observers.
There are many occasions in medicine when patients who are not terminally ill need artificial hydration (AH) and nutrition to tide them over a crisis until the body can function normally again. Some of these situations are shown in Table 2.
Table 2 Artificial hydration + nutrition may be needed
After some head injuries
After major surgery
In unconscious patients
During prolonged sedation
After strokes if swallowing is impaired
During intestinal obstruction
Stroke Patients Need Active Treatment and Prompt Assessment to Identify Controllable Risk Factors and Complications
Swallowing is impaired after 30-40% of strokes initially, but where recovery occurs it is usually apparent within 14 days. Therefore, it is important to maintain hydration during this time, and to take all appropriate measures to support life. Early tube-feeding may reduce the death rate, but most doctors prefer to wait for 14 days before considering it, and would maintain hydration with a drip or subcutaneous fluids initially.
If swallowing difficulties persist beyond 14 days, difficult decisions have to be made about the use of tube feeding to maintain hydration and nutrition. Quality of life factors enter the equation. Doctors should ask the question 'What does the patient want ? Do the burdens of treatment outweigh the benefits? Is the means of administration of fluids and nourishment in itself a burden to the patient? If the patient cannot speak for himself, an advance directive, giving an indication of his wishes, would be helpful at this stage. However, let me tell you a cautionary tale before you reach for your pen! Armchair decisions made in the prime of life may change when death is staring you in the face.
A consultant tended a patient who had suffered a stroke. The medical team cared for him actively and pulled him through, only to learn, retrospectively, that he had signed an advance directive refusing treatment in this situation. When the consultant apologised he replied "Oh, that�s all right doctor - please keep on treating me!". He was one of the lucky ones. Others do not have the chance to change their mind - and live.
It is important to stress that remarkable recoveries can occur after strokes, if doctors take an active approach to treatment. Medication may improve the situation in some patients; others are helped by surgical intervention to remove clot or tie off bleeding vessels. Many severely disabled people carry on bravely despite severe loss of function. One of my long-stay patients, a lovely Scotswoman, could not walk or speak a word after a stroke, but understood what was said to her, and communicated joyfully with body language and gesture. She was unforgettable.
I have, on only two occasions, been involved in the care of stroke patients who indicated that they did not want to be treated. One was a woman who pulled out a nasogastric tube, and glowered at her daughter, who then explained that her mother had told them in advance that she did not want to be treated in this situation. Treatment was therefore withheld. The other case was much more complex since it was primarily the relatives who refused to allow the patient to have a drip, causing moral conflict within the caring team.
Very often in medicine, life and death decisions have to be made in a hurry, without much background information about the patient. Patients may arrive on the ward or in Casualty, unconscious and desperately ill. They may be sent in by an emergency relief doctor in the middle of the night, or picked up by an ambulance after collapsing in the street. Faced with such a situation, all you can do as a doctor is to act in the patient s best interests, in the light of the information available to you, taking into account the clinical situation as it presents to you. Medicine is not always a calm and orderly activity, where legal documents can be scrutinised, and Courts deferred to at leisure. There isno time to lose in an emergency, chasing around for evidence of advance directives, locked in solicitors offices or GP surgeries out of hours.
Imagine the scene. You are called to a sick patient, and must concentrate on clinical matters, to establish a diagnosis. You are about to intervene to save life, when someone says the patient has signed an advance directive prohibiting active treatment. Attention is diverted to this.
Is the directive valid?
Where is the directive?
Is it the right patient? Are you quite sure?
Are the criteria fulfilled?
Have you got time to read it?
What about the patient - he has stopped breathing!
Why can t I treat this condition?
Can I risk overruling the directive?...
The end result may well be a dead patient, and a despairing and disillusioned doctor.
The British Geriatric Society statement on advance directives puts it well. "Inherent in the training of every doctor, nurse and first-aider is the need to resuscitate first, and then to discuss. This ensures that no patient or casualty is allowed to die unintentionally; legally binding advance directives could change this". (13)
Sometimes, with hindsight, some of the actions we take are inappropriate. but patients have to be given the benefit of the doubt. Where the outcome is uncertain, we must favour life rather than death. If we end up in court to defend a decision to override an advance directive, so be it. The courts could become rather full of such cases.
The main disadvantages of advance directives for patients and doctors are listed in Tables 3 and 4.
Table 3 Disadvantages for patients
Risk of signing under pressure.
Risk of signing when depressed.
- Can t predict future illness pattern.
Can t predict medical advances.
Treatable conditions may be untreated.
Risk of avoidable disability.
Risk of unintended death,
Risk of mistaken identity.
Table 4 Disadvantages for doctors
Problems of informed consent.
Distraction from clinical issues.
Adverse effect on morale.
Adverse effect on clinical outcome data.
Doctor/patient relationship changed.
Increased risk of litigation.
Despair, disillusion, resignations.
In summary, therefore, there are potential advantages and disadvantages of advance directives. In my view, the potential disadvantages far outweigh the advantages. Legally binding advance directives would have profoundly harmful effects on the doctor/patient relationship, and could undermine the whole ethos of the medical profession. The life of some patients would be curtailed prematurely others would survive in an unnecessarily debilitated state because treatment was withheld.
Potential savings in health care costs could be countered by rising administrative and legal costs. Energy that should be expended on clinical matters would be dissipated.
Autonomy is an illusion, for we are all dependent on each other no man is an island. Fear of disability must be overcome with courage, and assurance that loving care will be there in times of need.
D H Lawrence knew about fear of death, and asked whether peace of mind could be gained through euthanasia.
He wrote 7 :-
"And can a man his own quietus make
With a bare bodkin?
With daggers, bodkins, bullets, man can make
a bruise or break of exit for his life,
but is that a quietus, 0 tell me, is it quietus?
Surely not so! for how could murder
even self murder,
ever a quietus make?
O let us talk of quiet that we know,
that we can know, the deep and lovely quiet
of a strong heart at peace!"
That surely, ladies and gentlemen, is what we should all be aiming for at the end of life: the deep and lovely quiet of a strong heart at peace!
Advance statements about medical treatment Report of the British Medical Association. Para. 1.1. April 1995.
Memorandum from R A Derzon. USA Department of Health, Education & Welfare, Health Care Financing Administration, to President Carter. 1977.
"Hospitals will now ask patients if they wish to make a death plan". New York Times. 12 Jan 1991.
Advance directive form (Ref. CMQ Feb 1992). Voluntary Euthanasia Society, London.
Facing Infirmity. In 'Expanding Horizons. P. Rowntree Clifford. Lion Publishing plc. 1997.
'Who decides? Making decisions on behalf of mentally incapacitated adults. A Consultation Paper issued by the Lord Chancellor s Department. Dec. 1997. Para 4.6.
As ref. 6. Para. 4.10.
Finnis J. 'Living Will Legislation, in Euthanasia: Clinical Practice and the Law pp.167-176. Linacre Centre for Health Care Ethics. 1993.
F. v. West Berkshire Health Authority. 1989. Z
All ER 545,551, quoted by Jones, M.A. British Medical Journal 1995; 310: 717.
Patrick D. L. Beresford S.A.A., Ehreth J, Diehr P, Picciano J, Durham M and Grembowski D.E. Interpreting excess mortality in a prevention trial for older adults. International Journal of Epidemiology 1995 24 No. 3 (Suppl. 1.) p.S.27-S.33).
Crawford R. Live and Let die? Reform. pp.14-15, July/Aug. 1998.
Goldsmith M. Hearing the voice of people with dementia. Jessica Kingsley Publishers. 1996.
Legally binding wills or advance directives. British Geriatric Society statement. Millard P., April 1995.
Craig G. M. Palliative care from the perspective of a Consultant Geriatrician. The dangers of withholding hydration. Ethics & Medicine 1999; 15; 1, 15-19
Craig G. M. On withholding nutrition and hy dration in the terminally ill: has palliative medicine gone too far? Journal of Medical Ethics 1994; 20: 139-143.
As reference (1) Para 11.1. p . 33.
Lawrence D. H. 'The ship of death D. H. Lawrence Selected Poems. Bloomsbury Poetry Classics. Bloomsbury Publishing, 1992. pp.121-126.
Dr Gillian Craig is a retired Consultant Geriatrician in Northampton.