This article was published in the February 1998 edition of the Catholic Medical Quarterly
Peter H. Millard & Peter Jeffery
Based on the Orders of St. John Trust Lecture, given on 9th Septernber 1997 at St. John's Wood Conference Centre, Hospital of St. John and St. Elizabeth, London
Three years ago we set out to determine the problems that doctors have concerning decision making at the end of life. During our inquiry, we realised that doctors in all disciplines are deeply troubled in their conscience; some do not understand the difference between killing and letting go; some want the law changed to permit doctor-assisted death; all (including ourselves) lacked a clear, coherent, moral framework. Reacting to their concerns, we developed, in consultation with many people, three inter-locking principles, none of which can stand alone. We now need to discover, through wide consultation, whether the three principles meet the clinical and spiritual concerns of the doctors and nurses who professionally tend the sick, and the families, neighbours and friends who emotionally care for them. This paper is based, with the consent of the Editor of the Journal of the, Royal Society of Medicine, on a paper published in that journal in September 19971.
The paper is in two parts. Part One puts the research into its current context. Part Two relates the conclusions to a 1980 Vatican Declaration on Euthanasia.
The proposed principles
- Treatment of patients must reflect the inherent dignity of every person irrespective of age, debility, dependence, race, colour or creed.
- Actions taken must reflect the needs of the patient where he/she is.
- Decisions taken must value the person and accept human mortality.
At this stage in our country's history, with the deaths last year of Princess Diana in the old age of youth and Mother Theresa in the middle years of old age, it is important to understand why we face a crisis in care. Both, in their own ways, expressed their care for suffering humanity; both were touched in their hearts and souls to do something about it. Both died from stochastic ("characterized by a sequence of random variables ", Ed ) events: one a car crash, the other a heart attack. One was unexpected, the other forecast. Some might say, if only the first aid teams had arrived faster, or the doctors had been more efficient, Princess Diana may have lived. Others might think that Mother Theresa would have died earlier if doctors had not misused the worlds resources to keep her alive. These deaths bring to the fore four things:
- First, the unexpectedness of death and its finality.
- Second, the interaction between the attendants' ability, actions and available resources.
- Third, the mortality of the body and the continued life of the spirit.
- Fourth, the impact of death on emotions.
An Australian view of an American decision
In the summer of 1997, when visiting the Barrier Reef, one of us (PM) picked up the
bi-monthly Cairns Diocesan newspaper. The heading read:
US Supreme Court's Unanimous "No" to Euthanasia
It went on: "Isn't it amazing how the media seem to have completely missed reporting the news that the US Supreme Court on June 26th by nine votes to none voted 'NO' to euthanasia?"
The court added: "government's legitimate interests include prohibiting intentional killing and preserving human life, preventing the serious public health problem of suicide, especially among the young, the elderly, and those suffering from untreated pain or from depression or other mental disorders; protecting the medical profession's integrity and ethics and maintaining the physician's role as their patients' healers; protecting the poor, the elderly, disabled persons, the terminally ill, and persons in other vulnerable groups from indifference, prejudice, and psychological and financial pressure to end their lives; and avoiding a possible slide towards a voluntary and perhaps even involuntary euthanasia."
The Supreme Courts' decision, following on the House of Lords' conclusions, is welcome. How- ever, as the past Chairman of the Human Rights Society, the late Earl of Cork and Orrery stated, when he heard the news of the House of Lords' decision, "We would be naive to think that the subject of euthanasia will now go away". Witness to the wisdom of his view is the report in the Daily Telegraph (6th September 1997) that two cinemas in London are showing adverts. supporting euthanasia. To oppose this, doctors from all religions and all ethnic groups need a common set of clinical and moral values that underpin our opposition.
Experience at a conference in Australia
A week before PM's visit to Cairns, he attended the International Association of Gerontology Congress in Adelaide. The meeting began with a debate about euthanasia. The three who spoke for the motion were clearly "pro-life". All three expressed the viewpoint of the dignity of the person and the inviolability of the body. Not one discussed the question of human suffering, the mortality of man, or the limitations imposed by resources. The view they seemed to express was that everything possible should always be done to preserve human life. In contrast, those who supported euthanasia discussed the suffering of dementia, the degradation of the person, the life worse than death, the need to control scarce resources (even by assisted death), the failure of palliative care and the immense suffering that some dying people faced. Wouldn't it be kinder, they argued, if doctors, when faced with impossible problems, could put people to death? The debate was judged by acclamation, using a two round Yes or No vote. Despite PM's strong views, it seemed wrong to shout Yes, for the compassion and care seemed to lie with those who wanted to assist death, rather than with those who opposed it. Not, surprisingly the debate was won by the pro-euthanasia group.
From our Christian viewpoint, it is within the context of the "Good Samaritan Parable" that our actions must be judged.
Why the Appleton Conference conclusions mislead
The Appleton International Conference on Decisions to Forgo Life-Prolonging Medical Treatment concluded that four fonts - "Autonomy, Non-Maleficence, Beneficence and Justice" provide the basic framework for respecting the dignity of human life But these fonts have different weights, they bow to different circumstances, they have different interpretations in different cultures. The conference concluded that vitalism and euthanasia were both acceptable, so long as the patient / customer wanted it. However, sonic invited delegates disagreed. In particular, the Israeli delegates dissented to the Appleton conference conclusion that a competent patient's request for treatment, whether to prolong or end their life, carries a strong prima facie obligation (within certain bounds) on doctors to comply.
Dissent arises because the principles of Autonomy and Justice are inter-related. They are not absolute principles in themselves or even absolute when taken together as a whole. Thus, their application depends on the way each can be fulfilled in a societal setting. Furthermore, one person's rights imply another person's duties. That is why society places limits on individuals' rights. For example, no-one has the right to live in another person's house, to walk naked in the street or to drive on the wrong side of the road. Neither does the soldier have a right to fire his gun except in war. Yet, inexplicably, an ethical working party compared the soldier's gun with the doctor's syringe: but one was designed to kill, the other to save.' What trust would you have in your doctor if he 1 she had the autonomous right to act in the way he or she chose without regard to professional standards and the law of the land? Keep your distance from Dr Kevorkian, would be our advice to all.
However, personhood is not subservient in this way. Thus the principles of Non-Maleficence and Beneficence have a different quality. They are expressions of respect for life, which imply that no harm may be done to a patient and all treatment must be in the patient's best interests. These principles are absolute in character and permit no exceptions. Thus, their application is radically different from that of Autonomy and Justice.
In clinical practice, this is the difference between clinical judgement and clinical intent. Clinical judgement must take into account the patient, their family, the situation in the ward, the resources available, the policy of the hospital, the expectations of society, whilst the clinical intent must always be to do no harm to the person. In a very real sense, the principles of Non-Maleficence and Beneficence require the doctor to act as an advocate on behalf of the best interests of the sick patient, even if the doctor, the patient or the family wishes that they were dead.
By making the accepted standards of right and good vary with environment and from person to person, the Appleton Conference caused deliberate confusion. The effect of relativising the four principles is that life becomes relative to societal circumstances and life can be removed in the patient's best interests. Then the doctor is not an advocate on behalf of the patient but a servant of market forces. This illustrates the fatal flaw in relying on the four fonts approach alone.
Respect for human life
We consider that realistic respect for human life must come first: a realism that values the individual and accepts the mortality of humankind. This respect for the value of the person and recognition of the mortal nature of humankind is basic to the art of medicine.
"If one accepts the mortality of man so that life need not be preserved at all costs whilst at the same time demanding an absolute respect for life, these problems do not arise".
Confusion arises concerning how a policy that demands an absolute respect for life can also accept that life need not be preserved at all costs. The respect for life comes from the person this human life carries. All the major religions teach that it is the person that is immortal, but physical life itself is mortal. This is why doctors need not strive officiously to keep alive - vitalism - or seek to bring about death - euthanasia - for life is not an optional quality of being, it is the essence of being. Eventually, after hundreds of hours of discussion and thousands of written words, we settled on three value statements.
Three value statements
1. Treatment of patients must reflect the Inherent dignity of every person Irrespective of age, debility, dependence, race, colour or creed.
Unless we start here, then rights and duties can mean whatever society decides. Respect for the human person, the basis of the ancient Hippocratic Oath, acknowledges that acting in the patient's best interests means assisting nature to preserve life. Excellence in medical and nursing management is not simply an equal opportunity approach, where discrimination is totally absent; it must also respect the human person who is present at all stages of life. This is crucial when medical treatment is not given or Withdrawn. The value of the human person does not depend on whether a treatment is useful or not; first class nursing care conies before all other factors. However, this respect for the human person does not imply that doctors should strive to preserve life at all costs, for we are mortal and life need not be preserved at all costs.
2. Actions taken must reflect the needs of the patient where he or she is.
Treatment that reflects the needs of the patient in the community where they live and the inviolability of the human person forms the basis of the imperative to act in the patient's best interests. The achievement of this inevitably involves clinical, ethical, spiritual and resource considerations:
- Clinical, because enhancing the health and well-being of the patient should be the objective of all medical intervention.
- Ethical, because the proposed treatment must take into account the effect this treatment has on the family, the staff, the hospital and the community.
- Spiritual, in so far as treatment affects the inner spirit of the patient.
- Resources, as medical resources are limited and justice may require that those with a greater claim on resources come first.
Thus weighing the relative claims of the patient, family, staff, hospital and community involves balancing the burden and the benefit. This is a professional judgement as to the likely outcome of the treatment of this patient in this time and at this place. The doctor's judgement must also take into account whether the burden can be borne. The decisions made must be compassionate and loving, for this basic attitude portrays the values of humanity. Doctors must consider the impact of their decisions on the patient, their family, the staff and the community when they initiate or stop treatments. In each case, the benefits and burdens must be weighed up and the treatment options considered in the light of the effects of the decision on all concerned. This calculation cannot be simply a percentage of suc- cess; rather it must be a judgement on what is the total effect of the doctor's decisions on the patient, the family and the community, now (at the moment the decision is made) and in the future.
3. Decisions taken must value the person and accept human mortality.
A question that serious illness always poses is whether the patient's life is sustainable in this state. The rule is that decision making concerning death cannot be separated from decision making concerning life because the intent of the doctor must always be to do no harm. When this is applied to irreversible illness three questions occur:
- Is the patient's life sustainable taking into account the range of choices available?
- Can the burden of the treatment proposed be supported by the patient, their family and the staff?
- Can the patient choose their own treatment?
The aim should be either to improve or maintain the present state of health, and enable the patient and their family to live as normal a life as possible. In communicating with the patient, it is important to give a truthful picture of their state of health, in a way that enables them to accept the consequences of treatment.
Wisdom dictates that in certain circumstances sustaining life may be technically feasible but inappropriate. Life is not to be preserved at all costs. When a treatment is no longer appropriate in that it is no longer nature assisting, either because the body. itself can no longer sustain life, or the means used to sustain life are out of proportion to the life achieved, the mortality of humankind should be accepted and death allowed to take its course.
Conclusion of part one
The basic option in medicine must always be an option for life: the fundamental intent of a doctor must be to do no harm. This has two aspects. Positively, patients must he able to have confidence and trust that doctors will always give advice and recommend treatments that are beneficial and not deliberately harmful. Negatively, the fundamental intent must be to do no harm; otherwise, patients will lose their trust in the profession. In developing the three value statements, we have attempted to express simply and clearly the moral principles which should govern clinical practice.
We think that the three inter-locking principles concerning dignity, needs and values form a solid base upon which medical ethical principles could stand. Your assistance is needed to disseminate widely the proposed value statements, to criticise them, to strengthen them where necessary, and to facilitate the development of a new code of values which em underpin our belief in the traditional values of medicine. The second part of the paper puts the value statements into the perspective of the 1980 Vatican declaration on euthanasia.
1. Jeffery P, Millard PH. An ethical framework for clinical decision-making at the end of life. JRSM 1997;90:504-506.
2. Stauley JM. The Appleton International Conference; developing guidelines for decisions to forgo life-prolonging treatment. J Med. Ethics 1992;18 (suppl): 3-5.
3. Assisted death: Institute of Medical Ethics Working Party on the ethics of prolonging life and assisting death. Lancet 1990;336:610-613.
The 1980 Vatican Declaration on Euthanasia
Since the 16th Century, duties of life-preservation and care have been formulated in terms of "ordinary" and "extraordinary" means. There are four key ideas. The first key is "difficulty", meaning what a prudent man would consider a serious risk and therefore morally excusable. The second key is the obligation to preserve life, because failure so to do is tantamount to suicide. The third key is reasonable hope of success. In 1957, the Allocution of Pius XII to Physicians and Anaesthetists on the 24th November 1957 combined the duties of patient, doctor and family within a single principle: burden. The application of these ideas has always been difficult, and has been made immensely more difficult by modern medicine's ability to delay death. The definitive modern reply is in the 1980 Vatican Declaration on Euthanasia.
The Declaration states:
"In any case, it will be possible to make a correct judgement as to the means by studying the type of treatment to be used, its degree of complexity or risk, its cost and the possibilities of using it, and comparing these elements with the result that can be expected, taking into account the state of the sick person and his or her physical and moral resources".
To this general principle are added:
- the clarification of the right to use only normal means of treatment if advanced techniques carry risks or burdens;
- the right to use the most advanced techniques, even if still experimental, with the patient's consent;
- the right, with the patient's consent, to interrupt these means, where the results fall short of expectations.
Likewise, when death is imminent, it is permitted to refuse:
"treatment that would only secure a precarious and burdensome prolongation of life, so long as the normal care due to the sick person in similar cases is not interrupted".
To apply this, it is necessary to distinguish two quite separate ethical moments. The first is the decision to initiate treatment. The second concerns the removal of treatment.
Initiating treatment must be determined by weighing up the complexity of the treatment together with its risk, its cost, its availability, and the possibility of using it. These judgements must then he com- pared with the result that can be expected in the sick person, taking into account the severity of the ill- ness and their physical and moral resources. Hence it is moral to deny treatment where the chance of success is very poor, and when the cost to the community and 1 or the patient is very high. Other- wise, every patient would have the absolute right to be treated by all known means, totally ignoring the needs of others.
The Declaration states "burdensome" means occur when the complexity, risk, cost and the possibilities of intervening outweigh the physical and moral resources of the patient. Thus, the initiation of treatment is a medical decision based on balance between the probability of success and the perceived burden. Treatment is unethical when the cost of success is too high and where "cost" is understood not simply in terms of money but in terms of the burden put on the patient, on the carers, and on the community.
Removal of treatment
The more difficult decision concerns the removal of treatment. From the statement of 1980 it is clear that disproportionate / extraordinary treatment depends on several factors that go beyond merely taking into account:
"the state of the sick person and his or her physical and moral resources".
The text describes these as:
"the type of treatment to be used, its degree of complexity or risk, its cost and the possibilities of using it, and comparing these elements with the result that can be expected".
To judge this the text states:
"But for such a decision to be made, account will have to be taken of the reasonable wishes of the patient and the patient's family as also of the advice of the doctors who are specially competent in the matter. The latter may in particular judge that the investment in instruments and personnel is disproportionate to the results foreseen; they may also judge that the techniques applied impose on the patient strain or suffering out of proportion with the benefits which he or she may gain from such techniques".
This clearly means that, to withdraw treatment because it is believed to be disproportionate / extraordinary, there is a double factor to be taken into account: on one side, the physical and moral resources of the patient taking into account their reasonable wishes and the reasonable wishes of their family; on the other side, the advice of specialists in this case who will balance the investment of resources, including nursing resources, and the burden of techniques required against the benefits expected.
However, this leaves incomplete the Declaration's understanding of the removal of treatment. In discussing making do with ordinary as against extraordinary means, the Declaration on Euthanasia states that:
"one cannot impose on anyone the obligation to have recourse to a technique which is already in use but which carries a risk or is burdensome. Such a refusal is not the equivalent of suicide; on the contrary, it should be considered as an acceptance of the human condition, or a wish to avoid the application of a medical procedure disproportionate to the results that can be expected, or a desire not to impose excessive expense on the family or the community".
And when discussing removal of treatment of the dying it states:
"when inevitable death is imminent in spite of the means used, it is permitted in conscience to take the decision to refuse forms of treatment that would only secure a precarious and burdensome prolongation of life, so long as the normal care due to the sick person in similar cases is not interrupted".
This means that removing disproportionate means with the patient's agreement is not suicide but allowing death to take place, so long as all normal care is continued. The advice does not restrict ordinary means simply to nursing care, hydration and nutrition, but sees nursing care as any appropriate means to treat the patient.
Clarification of the Declaration
It is necessary to clarify further what the Declaration teaches concerning the morality of the removal of disproportionate means. It is the means used that become very burdensome or useless and thus causes them to be disproportionate; because the morality of the means depends not simply on, the intention and the correspondence of these means to the end envisaged, but also on the burden they impose on the patient, carers and community. This precision is very important because it is not the means themselves which are wrong. It is the burden they impose which is wrong. For example, in palliative medicine, chemotherapy may be offered to a patient who suffers from carcinoma of the liver. The patient may refuse this treatment, not because it is useless or because it does not preserve life, but because in the opinion of the patient the burden of treatment is disproportionate to the results expected.
If means are obligatory simply because they preserve life, we are left with vitalism. The very distinction ordinary / extraordinary has its basis in the fact that we are not obliged to preserve life, at any cost. But it is just as important to realise that a person's life is never useless. As the Declaration recognises it may be possible to withdraw means that
"only secure a precarious and burdensome prolongation of life, so long as the normal care due to the sick person in similar cases is not interrupted"
The principle behind this statement is that direct and intentional removal of life is never permitted, which is why normal care must be continued. Doctors cannot withdraw treatment the withdrawal of which directly kills the patient. The resulting death from the withdrawal of treatment must derive from the underlying disease.
There are two possibilities here: a treatment that is becoming inefficient; a treatment that is no longer morally binding.
It is the second possibility that is the nub of the problem. It is certain that no one is held to what is not morally binding. In the case of withdrawing treatment, the Declaration has defined the limits of moral obligations as:
"when specialists judge that the investment in instruments and personnel is disproportionate to the results foreseen, they may also judge that the techniques applied impose on the patient strain or suffering out of proportion with the benefits which he or she may gain from such techniques".
Thus if treatment is physically or morally no longer binding, the treatment is disproportionate / extraordinary and does not oblige.
The 1980 Declaration on Euthanasia clarified the meaning of the terms ordinary / extraordinary. Firstly, it rejected a "common use" interpretation and opted for a judgement based on complexity or risk, cost and prognosis, by comparing these elements with the result that can be expected, taking into account the state of the sick person and his or her physical and moral resources. Secondly, it saw the decision to treat as belonging to the specialist and the decision to refuse as belonging to the patient. Lastly, as regards a proportionate understanding of "burden" underscored in the term beneficial or non-beneficial, the Declaration taught that when the means become very burdensome or useless, they have become disproportionate and may be removed.
It is upon these moral principles that our code of practice stands.
Peter Millard MD, PhD, FRCP is the Eleanor Peel Professor of Geriatric Medicine, St. Goerge's Hospital, London.
Father Peter Jeffery CSSp is a Moral Theologian, Holy Ghost Father Missionary Institute, Middlesex University.