The following extract is from Life and Death in Healthcare Ethics: A short introduction (Routledge, 2000).
What, then, are our duties as patients, or potential patients, with regard to the preservation of life? What are the corresponding duties of doctors and other health professionals? Answers to these questions are often phrased in terms of a contrast between what are called 'ordinary' and 'extraordinary' means or measures of prolonging life. It should be noted that the terms 'ordinary' and 'extraordinary' can be used in different ways. As used by doctors, 'ordinary' and 'extraordinary' will often mean 'standard' or 'non-standard'. As used by ethicists, the term 'ordinary' is often used to describe those means of prolonging life which are morally required in view of the duty (of the doctor and/or patient) to preserve life and health. In contrast, the term 'extraordinary' is used to describe those means or measures which are not in this way morally required. A treatment which is standard for a certain class of patient may be more likely to be morally 'ordinary' (that is, morally required) than a treatment which is non-standard. However, there may well be reasons why the standard treatment is not morally required in the case of an individual patient.
Once again, it is useful at this point to think about human fulfilment in general. The good of life and health is (so the theory runs) only one of the 'basic human goods' in which we can participate. Participation in other goods -- for example, knowledge -- can limit the extent to which we make ourselves as healthy as we might be. Moreover, we may have special commitments which are simply incompatible with a very healthy lifestyle. For example, parents may find they have to let their own health slide to some extent in the course of caring for their children.2
Even in the absence of special commitments, however, there is no obligation for a patient to take measures to promote life and health if these measures will involve excessive burdens. Here we might think of the pain or discomfort which can accompany medical treatments, or of the financial cost of treatments to the patient, family, hospital or health service. We might also think of those burdens to the patient which vary greatly from one individual to another: for example, the patient's fear or repugnance at the prospect of losing a limb through amputation.3
A treatment or life-sustaining measure can be extraordinary because it is too painful, frightening, hazardous or disruptive for the patient, or because it is financially too burdensome to the patient, family, hospital or health service. A treatment can also be too burdensome in other ways to those who are caring for the patient -- for example, it can take up time or use facilities which are urgently needed by patients who would benefit more.4
A treatment can also be extraordinary because it is simply futile. For example, those who are dying of one illness have no obligation to accept treatment for a second life-threatening condition which is at a less advanced stage.5 Often, however, a treatment will be extraordinary not because that treatment will be altogether futile, but because its burdens will be disproportionate to the benefits it will bring.
For example, resuscitation of a terminal patient may impose burdens which, though not great, are excessive in relation to the slight prolongation of life it may achieve. The aim in deciding not to resuscitate may not be to shorten the life of such a patient, but merely to withhold a treatment which is thought to promise insufficient benefit. Sometimes, of course, it is not at all easy to determine the burdens and benefits of possible treatments. If the patient in question is competent, it is appropriate to consult him or her with regard to such 'borderline' treatments, so that the patient can weigh up the burdens and benefits him or herself. While a doctor should not be expected to carry out treatments which are clearly unwarranted, the help of the competent patient will be needed in evaluating borderline cases.
When it comes to accepting a treatment which is offered, the patient has rights and obligations. In the light of these rights and obligations, doctors and nurses should encourage the patient to accept those treatments which they believe are reasonable in the circumstances, while bearing in mind the fact that the burdens of treatment for the patient will vary from person to person, and that in any case it is the patient's responsibility to accept or decline treatments.6 Normally the only case in which the doctor or nurse could be entitled to override the patient's refusal would be if the patient did not appear to be truly competent at the time of refusing treatment, and/or if his or her motive for refusing it was suicidal. Thus, for example, a rescued suicide victim who refused to have his or her stomach pumped out would call for a different response from a non-suicidal patient who refused some treatment because it was very unpleasant.
It is difficult to argue that suicidal people may be protected from self-harm in the form of a 'positive act', but may not be protected from self-harm in the form of an omission with exactly the same motivation. It is also difficult to argue that those who are physically ill and suicidal should be treated in a radically different way from those who are physically well and suicidal. Unless we are to acknowledge publicly that those with certain conditions have lives of no value, we should offer the physically ill and suicidal, within the limits of our resources, the same kind of protection we offer the physically well and suicidal. After all, suicidal feelings are not a necessary concomitant of any physical disorder. The ill and suicidal may value their lives very differently if given an adequate level of support.
It is important here to remember the social dimension of suicide -- and, in particular, the social dimension of suicide which is assisted or tolerated by care-givers. Such assistance or toleration can be expected to have a demoralizing effect on the ill and disabled generally, and on society at large. It will be seen as a public statement of the worthlessness of life with some conditions -- or at least, as a statement that (in contrast to the case of other suicidal people) no-one cared enough to intervene in the case of those with such conditions. Rather than looking for ways to improve the lot of the ill and suicidal, society will see suicide as an 'easy way out', both for patients themselves and -- perhaps even more -- for other people. A positive climate of medical care, in which carers seek actively to ameliorate the lot of those who are suffering, will be hard to combine with a fatalistic and/or collusive approach to patient suicide.
Both for the sake of the suicidal themselves, and for the sake of other sick people and society at large, suicidal refusals of treatment should not be seen as inviolable. Intervention whether in treating the patient, or in referring him or her for psychiatric help will, in contrast, be appropriate.
However, it should not assumed that patients are suicidal merely on the basis of their refusal of some life-prolonging treatment. The fact that a patient foresees an earlier death as a result of refusing such treatment in no way proves that an earlier death is his or her aim in refusing. Rather, the patient may simply be exercising his or her right to determine what treatments are appropriate, in view of the benefits and burdens those treatments are expected to bring.
In the case of non-competent patients, of course, it is competent adults who must decide what treatments are appropriate in view of their benefits and burdens. For example, if a baby is born premature, the paediatrician must make a judgment on the extent to which intensive care is likely to benefit that baby, and on the burdens it is likely to bring. In making this judgment, the paediatrician will need to look at what is sometimes called the baby's 'quality of life', both during the period in intensive care, and after, if he or she survives.
Are we, then, back with the question of judging if the patient's life will be worthwhile? We need to distinguish here between two very different views of life which the term 'quality of life' can be used to describe. According to the first view, the patient's life in certain conditions has no 'quality' or value (and should, perhaps, be brought to a close). Whatever is thought to give a life value -- perhaps some form of positive mental experience -- will be altogether lacking in some patients. According to the second view, in contrast, the patient's life will always have some objective value, even if it does not always have enough value to justify certain interventions. 'Quality of life' is used, in this context, to refer to the value of the patient's 'well-being', while acknowledging the value of his or her 'being' or existing per se.
Health is an aspect of the good of life: human bodily existence.7 Human beings are less fulfilled, from the point of view of this particular good, the less healthy they are. This is not to say that human beings are less morally important the less healthy they are. On the contrary, it is precisely because they and their interests are morally important that these interests -- including that in life and health -- should be taken seriously by doctors. Doctors should not be too pessimistic in assessing the degree to which a treatment can benefit a patient. However, when there really is no (or little) chance of benefiting the patient to any great extent, the interest of the patient in being spared the burdens of the treatment should be given due weight.
To say that a treatment will not benefit a patient sufficiently to justify its burdens is not to say that the patient's life will have no value during the treatment, or after it is given. The fundamental, 'core' value of the patient's life can still be seen as intrinsic to that life, such that it is always good in itself, not bad in itself, that the patient continue to exist. However, the only absolute implication of this value which can be reasonably claimed is the negative duty not to choose to end the life of an innocent human being. With regard to supporting life, where the intention is not to end it, by act or by omission, we will have less and less reason to do this the more and more burdensome the means of support, and the fewer goods can be obtained for the patient over and above the good of life. It is, in short, permissible to consider a patient's 'quality of life' leading up to, during and after treatment in determining whether treatment is worthwhile in relation to the burdens it imposes. It is not permissible to assume that life in a certain condition has no 'quality' or value, and may, for that reason, be deliberately curtailed.
To return to the case of a competent patient's refusal of medical treatment, refusal because of some negative aspect of the treatment (the loss of a limb, for example), need not involve either the intention to die or the assumption that life in a certain condition would be worthless. Rather, life with some undesired aspect is rejected, not in favour of death but in favour of life (albeit a shorter life) without that undesired aspect. The patient would prefer to live a shorter time with two legs than a longer time with one. Such a person is rather like someone who chooses to live in a country with primitive medical facilities. The person who chooses to live in this country may foresee that he will or may die sooner than he would otherwise have died. Nonetheless, he is not choosing death simply by choosing to live in the country he happens to prefer. The same can be said of the patient who refuses some treatment he finds unappealing, while foreseeing and accepting that his life will be shortened as a result. As we have seen, such a refusal will not always be justified on the patient's part; however, it will not be suicidal.
1 The following sections include material previously published (Watt 1996b; Watt 1998). [Back]
2 Conversely, of course, parents may find themselves obliged to accept burdensome treatments for themselves which would not be morally required were it not for their responsibility to the children in their care. There will, however, be limits to what such parents are obliged to undergo for the sake of their children's welfare. [Back]
3 Whether such emotional reactions are sufficient to justify refusal of amputation will depend on the benefits this treatment is expected to bring. A degree of repugnance which is sufficient to justify refusal of amputation by an elderly patient with a limited life-expectancy may not be sufficient to justify refusal by a younger and/or healthier patient. [Back]
4 The decision to withdraw existing treatment from a patient is often seen as morally identical to a decision to withhold the treatment in the first place. It can, however, be argued that to be in receipt of a treatment gives one a prima facie claim on that treatment (Sulmasy and Sugarman 1994). We should not assume that it is always permissible, although it is certainly sometimes permissible, to withdraw a treatment on the grounds that someone else would derive from it somewhat more benefit. [Back]
5 There is, however, a sense in which curing the second illness, although misconceived, is not altogether futile, in that someone with two fatal illnesses is even less healthy than someone with one. [Back]
6 Patients will sometimes refuse medical treatments not because these treatments are seen as too burdensome, in any standard sense, but because they are seen as raising moral or religious objections. For example, Jehovah's Witnesses may refuse blood transfusions without which they will or may die. These refusals, too, should be respected by doctors and nurses, as refusals of a competent patient which are not suicidally motivated. [Back]
7 The life of an organism is its existence with the defining tendency to function as a whole. Health is existence with the tendency to function well, both at the macro and the micro level. [Back]