Ethical Principles in Palliative Medicine


A paper read at the Hawaii Conference, June 24,1993

In the present paper I try to show that ethical principles of medical activities in general can be adequately applied to medical activities for the patient in his terminal stage. For this objective, I shall argue first what are the principles and rules of medical activities in general, and then show how these can be applied to palliative medicine.


The ethical principles that I propose in medicine are the following two:
P1: The medical staff should intend to promote the patient's well-being through medical activities.

P2: The patient should be treated as a human being in medical activities.

P1, a teleological principle, which corresponds with the principle of beneficence, prescribes from which point of view an activity should be chosen. P2, on the other hand, is a deontological principle, and prescribes the process of doing activities: decision-making and performing a chosen activity.

These two principles need to be interpreted further so that we can find out what rules result from them.

The bodily situation, QOL and the private attitude towards life
With regard to P1, the term ``the patient's well-being'' needs to be philosophically analysed and clearly defined.

When we ask if a person is well or not, the question can be interpreted in two ways: if he spends his life well or if his situation is fine. By the first interpretation we attend to the person's attitude towards the situation, i.e. what he does or intends to do ---or how he lives or intends to live--- in the given situation. By the latter one, on the other hand, we attend to the given situation or circumstance in which the person happens to be.

By the term ``bodily situation'' let us refer to the given situation of the person himself seen from a medical point of view. This situation is distinguished from other situations surrounding the person, e.g. those of society, family, etc. ``Health'' and ``disease'', for instance, are terms that describe the bodily situation. Mental health is also a state of the person himself and thus also part of the bodily situation.

How should we distinguish what is good and what is bad in the bodily situation? Cancer itself, for instance, is neither good nor bad, but is valued bad for two reasons: it will result in distressing symptoms in the course of time and shorten the patient's life. The bodily situation of a person who has cancer is also judged bad because of these predicted effects on the person, even if the person is not aware of his situation, nor is actually suffering any distressing symptoms at present. Thus medical valuation of the bodily situation is based not only on the present actual life, but also on the predicted future life of a person.

For the assessment of a person's life at a certain moment, we have been using the term ``quality of life (QOL)''. In my view, a person's QOL is actually estimated according to the measure of freedom or actual chances that the person has at the moment of estimation. Pain and other distressing symptoms are bad, as they capture the person against his will and restrict the person's chances of doing things freely. Also psychological suffering (anxiety, depression, anger, etc.), physical disabilities and other factors that are negatively evaluated in the assessment of QOL are bad for the same reason.

Thus we can conclude that the measure of QOL is the measure of the patient's actual freedom at the moment of estimation, and the measure of the bodily situation is the measure of the integrated sum of his freedom that is and will be actualized in the course of time from the moment of estimation on until the time of death.

In other words, let B(t) be the estimated value of the bodily situation at a moment t,
Q(t) be the value of quality of life at t,
e be the moment of estimation and d be the time of death.
Then, the relation between B(e) and Q(t) may be described as follows:

B(e) is the integrated sum of Q(t) from e to d, i.e.:
B(e)= º (e-d) Q(t)dt
The measure of QOL, i.e. the measure of freedom, at a moment can be estimated publicly, and not privately, though it is estimated mainly on the basis of the patient's self-evaluation. Consequently also the bodily situation at the moment is estimated in terms of the patient's freedom, though it is valued by means of medical, and therefore scientific, inspection.

On the basis of this concept of QOL and the bodily situation, a rule results from P1, i.e:

R1-1: The medical staff should intend to make the patient's integrated sum of QOL from the moment on until the time of death as high as possible.
The patient's own preferences and values, which are privately evaluated, constitute another aspect which plays an important role in medical decision-making besides QOL and the bodily situation. This aspect corresponds to the patient's attitude to life mentioned before. Ultimately freedom (in terms of which the bodily situation as well as QOL are estimated) is of value in so far as it provides the patient with a chance to lead a full life. Consequently, the patient's overall plan in life and the patient's preferences have a casting-vote in many cases of desicion-making. As freedom medically estimated (i.e. QOL) consists of many aspects: physical capacities (i.e. performance status), affections physically sensed(pain etc.), affections caused in the mind (anxiety etc.), capacity to maintain human relationships etc., there can be a case where we must give priority to certain aspects among them. In such a case, we must refer to the patient's viewpoint. Thus another rule under P1 results:
R1-2: The patient should not be prevented from leading a full life.
Treating the Patient as a Human Being
From P2, two important rules result:
R2-1: Medical activities should be equally shared by both the medical staff and the patient.

R2-2: The medical staff should stand by the patient in suffering.

As regards the rule R2-1, medical activities may seem, at first glance, to be performed only by the medical staff for the patient. If a person, however, intends to treat another person as a human being, then, that person cannot perform just by himself any acts on the other, but should carry out such an act through a process of truthful communication with the other person in such a way that the other can commit himself to the act and participate in it. Thus, medical activities for human beings should be carried out co-operatively by both the medical staff and the patient.

Under this rule, informed-consent is said to be necessary on the side of the patient in the process of shared decision-making. Informed-consent, however, is also needed on the side of the medical staff. In order to choose an adequate treatment, the medical staff needs to get information about the patient from the patient himself, especially concerning the patient's own life-plan, preferences and values. Based on informed-consent by both sides, both can subjectively perform the chosen activity. Not only the medical staff but also the patient have a role in performing the activity.

The rule, however, may not entirely agree with theories of respect for the patient's self-determination or autonomy (e.g. Engelhardt 1986, Veatch 1987, Brock 1989, et al.). To begin with, although the medical staff should respect the patient's will, the ultimate decision should not be made by the patient alone. The medical staff, as a human being, should not blindly follow the patient's self-determination, but willingly and autonomously make joint decisions together with the patient.

Moreover, the patient does not have the right to die, though he has the right to choose his way of living; nor does he have the right to refuse all treatments, though he is allowed to refuse any particular treatments and to request another treatment with reference to his view of life. In general, although ``it is the patient's body, and in turn the patient's life, that bears the principal effects of any treatment instituted ( Brock 1989:336)'', the patient does not have the right to decide by himself how to treat his body or life. The patient is expected to justify his decision publicly, or his decision should be able to be justified publicly in terms of his plan for life, his own basic values, etc., even when the patient is incompetent. Of course the medical staff is responsible for finding out the reasoning on the side of the patient and respecting the patient's will. Nevertheless the patient's will may not be followed in every case. For instance, the patient has no right to suicide and others should not consent to a patient's will for suicide (at least in most cases), for the patient's decision will not be able to be justified.

This may reflect attitudes in Japan and may not be universally accepted by people in US or the Western World. The view that the patient does not have the right to decide by himself how to treat his life is presumably itself a basic belief and therefore cannot be justified from more basic principles. Nevertheless it is also presumable that the other view which admits such a right is a basic belief as well.

The rule R2-2, i.e. standing by the patient in suffering, results also from the fact that, as mentioned before, to treat someone as a human being means to maintain truthful communication with that person, which is just what R2-2 prescribes. In such communication, there are two different positions of the participants: facing each other and facing the same direction. When the participants face each other, they exchange words and conduct with each other. When the participants face the same direction, they share the same view, feelings, ideas, intentions, etc. One position alternates with the other position during the communication. A patient in suffering is in great need of such communication. The patient needs someone who is face to face with him and takes care of him, and who shares his suffering and his awareness of death. The medical staff is hence expected to stand by the patient as a humane participant of such communication.


The definition of Palliative Care
The dictionary defines the term ``palliative'' as ``a drug or medical treatment which relieves suffering without treating the cause of the suffering (Cobuild English Language Dictionary).'' In terms of the theories described above, we can translate the phrase in this definition, ``which relieves suffering'' into ``which makes the present QOL of a patient better'', and ``without treating the cause of the suffering'' into ``without trying to cure'' or ``without trying to make his QOL in the future better nor to prolong his lifespan''.

Thus palliative therapy is distinguished from curative therapy in that it is concerned with the present life, while the latter mainly with the future life. Surgery, for instance, generally makes the patient's present QOL lower( sometimes seriously) for a while. Nevertheless we choose it as a curative treatment, for, by repairing or removing the part of the body which is causing the problem, the patient's future QOL will be much better and the patient's lifespan will be prolonged. The patient is willing to sacrifice a better present for the sake of a better future. The saying ,``A good medicine tastes bitter'', recommends such a sacrifice in its literal meaning. By contrast, palliative therapy attends to the patient's present QOL and is aimed at a better present. Hence we can revise the definition of palliative care as follows:

Palliative care is a medical activity which is aimed at making the present QOL of the patient as high as possible.
The reasoning for choosing palliative medicine
In the choice of surgery mentioned above, the patient prefers a better future over a better present, because the integrated sum of his QOL from the present on until the time of death in the event of receiving surgery is estimated to be better than in the event of not receiving it. This reasoning based on R1-1 is appropriately applied to the choice of medical treatments for a patient in his terminal stage, when we put more importance on palliative rather than curative therapy. By comparing various kinds of therapies and treatments, we choose the one which will result in the highest integrated sum of the patient's QOL from the present on until his death. In most terminal care cases, palliative therapy will achieve the best result. In some cases, curative therapy combined with palliative therapy will further increase the integral sum of the patient's QOL.

Even when we stop curative therapy and restrict our activities to palliative therapy, we do not intend to shorten the patient's life, but rather to raise the integrated sum of the patient's QOL. In some cases, despite the prediction of a shorter life, we may stop curative therapy because the integarated sum of QOL will be better than in the event of our continuing it. In other cases, we may foresee both a prolongation of the patient's life as well as improvement in his QOL by stopping curative therapy. Thus, the choice of palliative therapy as the primary therapy is based on P1(R1-1) and there is no intention of either hastening or postponing death, even though we may foresee it hastened or postponed.

For patients in their terminal stage, the present life, not the future one, is most important, and hence the improvement of the patient's present QOL proportionally corresponds to the improvement of the integrated sum of his QOL. Consequently palliative therapy becomes the primary therapy according to P1.

Relief from total pain and other distressing elements
Palliative care aims to relieve the patient of forces which take away his freedom, and hence physical pain and other distressing symptoms should first be alleviated by medical treatment. Also psychological sufferings should be dealt with. These sufferings are among forces that take away the patient's freedom and directly make the psychological aspect of QOL worse. They also affect physical pain and consequently make this aspect of QOL lower as well.

Psychological suffering, or pain, is generally affected by the patient's recognition of his present situation. When physical pain makes someone anxious, for instance, anxiety does not result directly from the pain itself but from the obscure recognition that the patient has pain and therefore something wrong must have happened in his body and something worse might be going to happen in the future. Similarly, information of the patient's condition sometimes results in psychological pain for the patient.

To relieve the patient of such psychological pain, the medical staff needs to approach the patient's mind. Though some drugs may be helpful, the most basic approach is the communication with the patient, which the medical staff should carry out with compassion (R2-2). Psychological suffering is deeply connected with the patient's recognition of his situation, and hence adequate information about his situation should be offered (R2-1). Even when the patient's situation is hopeless, it is presumably better for the patient to know about it than to be anxious without knowing. In such a case the most important care is for the medical staff to stand by the patient and to prevent him from despairing (R2-2).

Leading a full life during the last days
Trying to maintain QOL as high as possible for the patient in his terminal stage, palliative medicine is chosen in the hope that the patient can lead a full life during his last days. A few brief comments will clarify the relationship between maintaining QOL and leading a full life.

Firstly, in terminal care cases the medical staff is sometimes expected to directly help the patient to lead a full life. Although the activities which are directly involved in the patient's leading a full life are not properly contained within palliative therapy, they are nevertheless in accordance with P1. The patient in his terminal stage usually cannot maintain contact with many people and the medical staff is among the few people who have a communicative relationship with the patient and can help him. Thus activities for the patient to lead a full life are appropriately performed by the medical staff (R1-2 and R2-2).

Secondly, for the sake of the patient's leading a full life it is important to respect the patient's own preferences and values. For instance, when we must give priority to one aspect of QOL over other aspects, we should do it according to the patient's plan for life, preferences etc. (R1-2).

Thirdly, while making QOL better is for the sake of leading a full life, the fullness of life also makes QOL better. A full life at least makes the psychological aspect of QOL better and psychological relief may have a good influence on physical pain. Thus leading a full life is relevant also to R1-1, though indirectly.

Fourthly, so called spiritual aspects of care are involved in this objective, i.e. the patient's leading a full life, and not directly involved in maintaining QOL.

Death with dignity
The two principles, the rules under them and their application to palliative medicine are generally appropriate also to the problem of how to treat the dying. Palliative medicine based on the two principles will result in the patient's death with dignity. Let us examine some topics in the problem.

As to the discussion concerning active and passive euthanasia(Rachels 1975, et al.), or killing and allowing to die, neither is justified by R1-1. If a medical treatment can be described as ``killing'' or ``allowing to die'', then, its intended purpose cannot be to raise the integrated sum of QOL. On the other hand, if the physician chooses a treatment intending to gain the best integral sum of QOL, while foreseeing the patient's earlier death, then, such a treatment can be justified according to R1-1.

A similar reasoning is valid for the problem of withholding and withdrawing life-sustaining treatment. For instance, the condition by Lynn and Childress 1983 for foregoing nutrition and hydration is in accordance with P1, when they say, ``Only when the procedure and resulting improvement in nutrition and hydration do not offer the patient a net benefit over what he or she would otherwise have faced.''

As to active voluntary euthanasia, the argument from mercy supporting it (Rachels1975) now is not valid in most cases due to improvements in palliative medicine. There still remains, however, the argument that the prohibition of active voluntary euthanasia results in failure to respect the self-determination of patients who want their lives directly ended (Brock 1989:347-349). However, both P1 and P2 are principles governing life and not death. Death is only the end of life and therefore has no positive content. Thus we cannnot compare the integrated sum of QOL in the case where a patient in his terminal stage directly ends his life with the integrated sum of QOL in the case where the patient continues to live. We can only compare between different ways of life, and not between life and death. Similarly, as mentioned before, a human being does not have the right to die or to end his life, although he has the right to choose how to live. Consequently, the medical staff should not agree with a patient who wants his life directly ended, but rather should try to persuade the patient not to end his life (P2).

In summary, although palliative medicine intends to relieve the patient of suffering, it in no way offers any relief from life itself.


The principles and rules mentioned above not only provides an ethical check on medical activities, but also function as a guideline. They are also useful for the theoretical understanding of palliative medicine as well as medical activities in general. This paper has concentrated on the ethics between the medical staff and the patient, and therefore may be said to be lacking in the concept of justice from the social point of view, a concept about which I hope to argue elsewhere.

Faculty of Arts and Letters, Tohoku University, JAPAN,