- Email: [email protected]
In whose interests? The best interests principle under ethical scrutiny
AUSTRALIAN CRITICAL CARE
Dr. Susan Bailey • RN Crit Care Cert BAppSc (A N u r s / N Ed) M N PhD D e a k i n University, F a c u l t y of H e a l t h a n d B e h a v i o u r a l Sciences W a t e r f r o n t C a m p u s , G e e l o n g VIC
Abstract: This paper critically examines the best interests principle and its role in making decisions about intensive care treatment. In current practice the best interests principle is sometimes relied upon to guide decision making in circumstances when the patient is incompetent, although it is intrinsically linked to inconsistent assumptions about what is meant by quality of life. This situation means that there is potential that moral errors will be made that may result in an unwanted extension of life for some individuals or the premature death of others. It is difficult to justify such decision making on ethical grounds. A greater understanding of the best interests principle, and consequently the concept of quality of life, is needed in order to ensure that decision making about intensive care is ethically defensible. It is argued that an ideal theory of quality of life provides an appropriate framework for best interests decisions, and that the decision making process ought to, whenever possible, involve the patient's close family.
Bailey S. In whose interests? The best interests principle under ethical scrutiny. Aust Crit Care 2001; 14(4):161-164.
INTRODUCTION The best interests principle is a guiding principle for decision making in health care and is defined as acting in order to promote the good of the individual to the maximum L This principle is sometimes referred to in the context of decision making about intensive care treatment, for example, as a means of justifying the withholding or the providing of treatment. Referral to what is, or is not, in the patient's best interests occurs despite the fact that intensive care physicians and nurses, as individuals, probably possess only an intuitive, rather than a scholarly, understanding of the principle. Traditionally, physicians and nurses ostensibly consider the patient's interests as paramount when faced with making individual decisions about health care, but such tradition does not necessarily equate with ethically defensible practice. This manuscript provides a critical analysis of the best interests principle and its current application in relation to decision making about intensive care treatment. It will be argued that the best interests principle, as it is currently understood and utilised in contemporary clinical practice, is ethically incoherent.
DECISION MAKING The particular circumstances of critical illness may sometimes require that intensive care physicians and nurses refer to the best interests principle (however it is understood) as a means of guiding decision making. For example, many critically ill or injured patients are not accompanied to a hospital by a relative or close friend, as critical illness tends to be sudden and unexpected in onset. Sometimes there is a delay in contacting the next of kin,
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particularly if the patient is incompetent and is not carrying some form of identification. In these circumstances, treatment decisions are often made by intensive care physicians, and occasionally by nurses, based on the patient's medical prognosis and very limited further information. However, anecdotal evidence suggests that there is a tendency for physicians and nurses to also refer to the patient's best interests as justification for a particular decision even when it is not required by conditions such as those above. That is, even when the patient is competent, or where close family are present, some evaluation of the patient's best interests will often guide decision making, or may perhaps provide at least a superficially acceptable rationale for a decision that is based on other criteria. As an example, a decision made not to provide intensive care to an 80 year old individual may be justified by referring to the patient's best interests, when in fact the rationale had nothing to do with the individual's interests, but perhaps was more closely linked to resource shortages. Therefore, in current clinical practice - although the best interests principle may be relied upon, or referred to, in making treatment decisions - it is not immediately apparent that this principle provides an ethically defensible means (or perhaps, the most ethically defensible means), of determining whether treatment ought to be provided or withheld. Further, it is not evident that those persons responsible for making such decisions possess a collective understanding of this principle that extends beyond commonly held assumptions about 'interests'. The best interests principle needs to tell us something about how the best interests of an individual are to be determined. What factors ought to be taken into consideration? Indeed, what are interests, and what are 'best' interests, in the context of a critically ill patient?
NOVEMBER 2001
AUSTRALIAN CRITICAL CARE
F O R T H E G O O D OF T H E I N D I V I D U A L The best interests principle necessarily raises questions about what is meant by the good of the individual - what makes up an individual's ultimate good or well-being? It demands some sort of weighing up of the benefits expected to arise from different courses of action. For example, Buchanan and Brock 2 consider that the principle: instructs us to determine the net benefit for the patient of each option, assigning different weights to the options to reflect the relative importance of the various interests they further or thwart, then subtracting costs or 'disbenefits' from the benefits for each option. The course of action to be followed, then, is the one with the greatest net benefit to the patient. The decision therefore does not just take into consideration the perceived medical benefits to the patient. For example, it is not simply a matter of deciding whether the patient has a reasonable chance of recovery or not. Rather, as suggested by the USA President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioural Research 3, it involves a consideration of factors such as the following: •
the relief of suffering
•
the preservation or restoration of functioning
•
the quality as well as the extent of life sustained
•
the satisfaction of present desires
•
opportunities for future satisfactions
•
the possibility of developing or regaining the capacity for self determination.
However, a list such as this, describing which factors should perhaps be considered in making decisions based on the best interests principle, does not inform us about how benefits should be weighed up, which benefits are more important than others, and how the costs of various options should be factored in. For example, such lists do not inform us whether more (or less) importance should be given to the relief of suffering as opposed to the future possibility of regaining the capacity for self determination. Some interests (such as avoiding death and chronic suffering) would generally be considered, by most people, to be more important than others, but generalisations do not reflect individual preferences.
reasonable people choose in any particular circumstances. In any case, a generalisation about best interests based on the preferences of most informed and reasonable people does not respect a person's self-determination in the same way to which the principles of informed consent and substituted judgement are potentially able. The latter two concepts focus on the expressed perceptions and preferences of the individual, whereas the best interests principle reflects a generalised view that may or may not concur with the preferences of the individual. Furthermore, there will be cases, in all probability, where several equally reasonable courses of action will be possible, rather than one single alternative.
LITERATURE REVIEW Despite the difficulty of clearly articulating exactly how the best interests of a patient are to be determined, the best interests principle is often referred to by medical texts and guidelines for doctors' decision making about incompetent patients. Assumptions about best interests are intrinsically linked to assumptions about what is meant by quality of life or well-being. Many references to medical decision making assume that all readers possess a similar understanding of what is meant by 'quality of life', and therefore what is meant by 'best interests'. The pervasiveness of this assumption is well illustrated in texts such as Law and ethics in medicine for doctors in Victoria ~'~, a publication that was disseminated to all medical practitioners in Victoria, Australia. Although the book is promoted as "a practical guide to significant ethical obligations and legal requirements which today accompany the practice of medicine" 5, the best interests principle is not addressed except in the context of children and the mentally ill. The authors do, however, make reference to Jennett's 7 indices of when a specific treatment may be deemed inappropriate and, although these suggestions are placed within a chapter focusing on limited medical resources, the suggestions do imply a reference to the best interests principle. Jennett suggests that treatment may be inappropriate if it is likely to prove: •
Unnecessary: because the patient is not seriously enough affected to need it or the desired objective can be achieved by simpler means.
Likewise, the list of factors does not tell us anything about, for example, degrees of suffering or functioning. That is, with the understanding that factors such as suffering and functioning do not tend to possess an all-or-nothing status, how to deal with questions about to what degree should functioning be restored or preserved, or to what degree should suffering be eliminated, remains unclear.
•
Unsuccessful: because the patient has a condition too advanced to respond to or benefit from treatment.
•
Unsafe: because the risks outweigh the probable benefits.
•
Unkind: because the quality of life following the treatment is not likely to be good enough or long enough to justify such treatment.
It has been suggested that these questions can be dealt with by interpreting the best interests of the patient as the alternative that "most informed and reasonable persons would choose in the circumstances" 4. Therefore, according to Brock, the best interests principle is similar to the informed consent and substituted judgement principles because it is understood as requiring the selection of the alternative that the patient, if informed and reasonable, would have chosen him or herself, had he or she been able to do so.
•
Unwise: because it diverts resources from activities which would benefit others to a greater extent.
All three principles implicitly employ an "account of the good life that is a life of choice and self-determination (autonomy) concerning aims, values and life plan" 4. We seem to be left, however, with the question of what would most informed and
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Plueckhahn et al. 5 describe the above points as reasonable guiding principles that have been part of good medical practice for a long time. The trouble though, is that these so-called 'guiding principles' are based on many unquestioned assumptions about doctors being able to judge quality of life, to weigh up risks and benefits, and to decide on a fair distribution of resources. There does not seem to be any firm basis for these assumptions, except that, traditionally, doctors have made medical decisions based on their individual conceptions of what is meant by 'quality of life', and, in the case of limited resources, a learned ability to choose between lives.
NOVEMBER 2001
AAA ~'\\ .... AUSTRALIAN CRITICAL CARE
A further example of the assumed shared understanding of the concept of quality of life is a widely recognised document outlining guidelines for intensive care medicine, published by the European Society of Intensive Care Medicine s, which states that "patients with no chance of recovering to a reasonable quality of life should not be admitted to the ICU". These guidelines imply that the doctors making decisions regarding the provision of intensive care understand what a reasonable quality of life is, and are able to determine whether the patient will or will not have a reasonable quality of life following discharge. Furthermore, even many texts written with a specific focus on the ethical aspects of intensive care practice do not question this assumption. For example, Mayo and Bennett 9 state that decisions regarding the provision of intensive care should be guided by the principles of autonomy and a burden/benefit analysis. They claim that where the "burden of treatment might be so great as to outweigh the benefit of prolonging life, or life itself might be seen as a burden which would be magnified by even a minimally burdensome life-prolonging treatment", life-sustaining treatment should be withheld. However, the authors do not explain how one is supposed to judge whether life is a burden or not, nor how one should deal with potentially conflicting claims arising from the principle of autonomy and a burden/benefit analysis. These sorts of recommendations demonstrate a lack of conceptual analysis of the issue and, in doing so, assume that the reader possesses not only a coherent understanding of principles such as autonomy and burden/benefit analysis, but that a common or shared understanding of these principles, between individual readers, exists. It is evident that guidelines currently available for use by the medical profession that purport to assist doctors to make decisions based on the best interests of the patient are seriously lacking in necessary detail, both in terms of conceptual framework and practical application. In the context of decision making about the provision of intensive care, available guidelines are so vague as to be practically useless. However, these sorts of guidelines should not be dismissed on the grounds that they are useless, and therefore harmless or vacuous. What they serve to do is to reinforce the apparent status quo; the ethos of unquestioned and uncritical assumptions about how the concept of quality of life is interpreted.
QUALITY OF LIFE The best interests standard is fundamentally linked to prudential value theory which is, in turn, concerned with what makes up an individual's well-being (or what gives his/her life prudential value or quality). Accounts of prudential value, utilised in the discussion of patient's best interests, often tend to be presupposed and naive ~0, and the recommendations and so-called decision making guiding principles discussed in the preceding section are illustrative of this naivety. Because it tends to be assumed that the community generally shares a common understanding of the meaning of 'quality of life', references to this concept may be taken to imply "binding prescriptions and proscriptions in relation to how a given individual human life ought and ought not to be regarded .... However, despite the apparent importance of quality of life as an integral component of guidelines produced in order to expedite health care decisions, it is very difficult to articulate exactly what we really mean when we refer to quality of life. The problem with
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this state of affairs, this non-explicit, yet assumed common understanding upon which the so-called guiding principles for medical practice are dependent, is that it masks the existence of disparate conceptions of quality of life. Therefore, it is likely that some decisions are being made about the provision of intensive care (and health care in general) that are, in fact, not in the best interests of an individual patient. Furthermore, this widespread assumption that we possess a shared understanding of what is meant by quality of life means that decisions that appear to be based on quality of life criteria may be unlikely to be questioned, even by those directly affected. However, there is, in fact, enormous potential for making moral errors TM~z There exist many theories that attempt to explain quality of life or well-being - these may be roughly divided up into subjectivist and objectivist accounts. A subjective account is one which refers to the individual as being the determining agent in the provision of a description of that person's good. Subjectivist accounts tend to be referred to as utilitarian accounts. This is so because they often take the concept of well-being to equate with utility. Utility, in turn, may be perceived to be related to, or to represent, either a particular mental state (for example, pleasure or pain) or states of the world which fulfil desires ,3 Conversely, an objective account does not interpret the individual's own view of their situation as determining their well-being, but refers to other factors. Objective accounts traditionally focus on the notion of 'need' rather than desires. The need account is considered objective because its standard "rests on aims flowing from human nature and not on any flowing from a person's particular tastes, attitudes or interests" 13. Well-being, according to this account, can be defined as the level to which basic needs are met - basic needs defined roughly are what we need to survive, to be healthy, to avoid harm and to function properly. It is possible to define basic needs broadly as 'characteristic of human existence' (thereby implying that they connect with ends that we do not choose), or a minimum basic need as that which most persons have. Therefore, basic needs consist, for example, of adequate nutrition, shelter, health, body integrity, and the absence of consuming pain and suffering ~4. However, both subjective and objective accounts of quality of life are deficient predominantly because they each do not recognise features of the good found in the other account. This fundamental concern relates to what each account leaves out, rather than what each includes. Ideal accounts of quality of life counteract this problem by consisting partly of the realisation of specific, explicitly normative ideals, while also acknowledging a plurality of component ideals that place constraints on and/or supplement the extent to which happiness and/or preference satisfaction serves a person's good ~. Therefore, from an ideal theory perspective, when a decision must be made regarding life-sustaining treatment, what should be assessed is how the condition of the patient's life affects (or will affect in the future) the value of life to that patient and whether the patient is competent or incompetent. The role of quality of life judgements in these sorts of decisions may be extremely limited, particularly where the focus is on a threshold question asking whether the quality of life is, on balance, so poor that existence would be worse than non-existence. It is evident, however, that for both competent and incompetent patients, ideal theories of wellbeing are able to offer more than subjective or objective accounts,
NOVEMBER 2001
AUSTRALIAN CRITICAL CARE
because they include the preferences (subjective conscious experiences and informed desires) of the individual in addition to objectively ascribable material facts and a normative evaluation of such facts.
ethically defensible decision making. Furthermore, it is suggested that the inclusion of the close family of an incompetent patient in the decision making process ought to be supported whenever practically possible.
Therefore, to make a decision about intensive care treatment based on the best interests principle (on behalf of an incompetent patient), it is evident that a judgement about the patient's future quality of life is required. In this situation, it is recommended that an ideal theory of quality of life be referred to. Further, in order to gather the required information, it seems imperative that the patient's closest relative(s) is involved in decision making, as it is this person(s) who will be able to reiterate the patient's preferences and values. For example, it is this person who will best be able to say (at least with the greatest degree of accuracy) whether the patient would wish to continue intensive care treatment despite a high probability of intractable pain, loss of bodily integrity and functioning associated with survival.
REFERENCES
There are many arguments in the philosophical literature that both support and argue against the role of family in decision making when the patient is incompetent. However, on balance, it is preferable to include the patient's close family in decision making about acute care simply because they are best placed to understand the patient's values and beliefs (the subjective component of an ideal theory of quality of life) that influence objective components of quality of life.
CONCLUSION This paper critically examined the best interests principle and its role in making decisions about intensive care treatment. In current practice, the best interests principle is sometimes relied upon to guide decision making in circumstances when the patient is incompetent, although it may be intrinsically linked to inconsistent assumptions about what is meant by quality of life. This situation means that there is potential for moral errors to be made that may result in an unwanted extension of life for some individuals or the premature death of others. It is acknowledged that practical difficulties encountered in the clinical setting, such as the haste with which some decisions must be made, impact on the decision making process. Nonetheless, it is argued that a greater understanding of the best interests principle, and consequently the concept of quality of life, may result in more
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1.
Buchanan A & Brock D. Deciding for others. The MiIbank Quarterly 1986; 64(Supp 2):17-95.
2.
Buchanan A & Brock D. Deciding for others: the ethics of surrogate decision making. Cambridge: Cambridge University Press, 1989:123.
3.
President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. Deciding to Forego Life Sustaining Treatment. Washington: US Government Printing Office, I983:135.
4.
Brock D. Quality of life measures in health care and medical ethics. In: Nussbaum A Sen (Ed). The Quality of Life. Oxford: Clarendon Press, 1993:112.
5.
Plueckhahn V, Breen K & Cordner S (Eds). Law and Ethics in Medicine for Doctors in Victoria. Geelong: Thacker Print Group, 1994.
6.
Breen K, Plueckhahn V & Cordner S. Ethics, Law & Medical Practice. St. Leonards NSW: Allen & Unwin, 1997.
7.
Jennett B. High technology medicine: benefits and burdens (2nd ed.) Oxford: Oxford University Press, 1986.
8.
European Society of Intensive Care Medicine. Guidelines for the utilisation of intensive care units. Intensive Care Medicine 1994; 20:163-4.
9.
Mayo D & Bennett M. The role of burden/benefit analysis in the orchestration of death in the 1CU. In: YoungnerJ (Ed). Human Values in Critical Care Medicine. New York: Praeger Publishers, 1986:41.
10.
DegraziaD. Value theory and the best interests standard. Bioethics 1995; 9(1):50-61.
11. Johnstone M. Bioethics: A Nursing Perspective (3rd ed). WB Saunders, 1999.
Sydney:
12. Hope T, Sprigins D & Crisp R. Not clinically indicated: patient's interests or resource allocation? Monash Bioethics Review 1994; 13(2):14-i8. 13. Griffin J. Well-being: Its Meaning, Measurement and Moral Importance. Oxford: Clarendon Press, 1986:7. 14. Daniels N. Just Health Care. Cambridge: Cambridge University Press, 1985. 15. Morreim EH. Computing the Quality of Life. In: Agich GJ & Begley CE (Eds). The Price of Health. Dordrecht: D Reidel Pub Co, 1986:45-69. •
NOVEMBER 2001
Dr. Susan Bailey • RN Crit Care Cert BAppSc (A N u r s / N Ed) M N PhD D e a k i n University, F a c u l t y of H e a l t h a n d B e h a v i o u r a l Sciences W a t e r f r o n t C a m p u s , G e e l o n g VIC
Abstract: This paper critically examines the best interests principle and its role in making decisions about intensive care treatment. In current practice the best interests principle is sometimes relied upon to guide decision making in circumstances when the patient is incompetent, although it is intrinsically linked to inconsistent assumptions about what is meant by quality of life. This situation means that there is potential that moral errors will be made that may result in an unwanted extension of life for some individuals or the premature death of others. It is difficult to justify such decision making on ethical grounds. A greater understanding of the best interests principle, and consequently the concept of quality of life, is needed in order to ensure that decision making about intensive care is ethically defensible. It is argued that an ideal theory of quality of life provides an appropriate framework for best interests decisions, and that the decision making process ought to, whenever possible, involve the patient's close family.
Bailey S. In whose interests? The best interests principle under ethical scrutiny. Aust Crit Care 2001; 14(4):161-164.
INTRODUCTION The best interests principle is a guiding principle for decision making in health care and is defined as acting in order to promote the good of the individual to the maximum L This principle is sometimes referred to in the context of decision making about intensive care treatment, for example, as a means of justifying the withholding or the providing of treatment. Referral to what is, or is not, in the patient's best interests occurs despite the fact that intensive care physicians and nurses, as individuals, probably possess only an intuitive, rather than a scholarly, understanding of the principle. Traditionally, physicians and nurses ostensibly consider the patient's interests as paramount when faced with making individual decisions about health care, but such tradition does not necessarily equate with ethically defensible practice. This manuscript provides a critical analysis of the best interests principle and its current application in relation to decision making about intensive care treatment. It will be argued that the best interests principle, as it is currently understood and utilised in contemporary clinical practice, is ethically incoherent.
DECISION MAKING The particular circumstances of critical illness may sometimes require that intensive care physicians and nurses refer to the best interests principle (however it is understood) as a means of guiding decision making. For example, many critically ill or injured patients are not accompanied to a hospital by a relative or close friend, as critical illness tends to be sudden and unexpected in onset. Sometimes there is a delay in contacting the next of kin,
VOLUME 14
NUMBER 4
particularly if the patient is incompetent and is not carrying some form of identification. In these circumstances, treatment decisions are often made by intensive care physicians, and occasionally by nurses, based on the patient's medical prognosis and very limited further information. However, anecdotal evidence suggests that there is a tendency for physicians and nurses to also refer to the patient's best interests as justification for a particular decision even when it is not required by conditions such as those above. That is, even when the patient is competent, or where close family are present, some evaluation of the patient's best interests will often guide decision making, or may perhaps provide at least a superficially acceptable rationale for a decision that is based on other criteria. As an example, a decision made not to provide intensive care to an 80 year old individual may be justified by referring to the patient's best interests, when in fact the rationale had nothing to do with the individual's interests, but perhaps was more closely linked to resource shortages. Therefore, in current clinical practice - although the best interests principle may be relied upon, or referred to, in making treatment decisions - it is not immediately apparent that this principle provides an ethically defensible means (or perhaps, the most ethically defensible means), of determining whether treatment ought to be provided or withheld. Further, it is not evident that those persons responsible for making such decisions possess a collective understanding of this principle that extends beyond commonly held assumptions about 'interests'. The best interests principle needs to tell us something about how the best interests of an individual are to be determined. What factors ought to be taken into consideration? Indeed, what are interests, and what are 'best' interests, in the context of a critically ill patient?
NOVEMBER 2001
AUSTRALIAN CRITICAL CARE
F O R T H E G O O D OF T H E I N D I V I D U A L The best interests principle necessarily raises questions about what is meant by the good of the individual - what makes up an individual's ultimate good or well-being? It demands some sort of weighing up of the benefits expected to arise from different courses of action. For example, Buchanan and Brock 2 consider that the principle: instructs us to determine the net benefit for the patient of each option, assigning different weights to the options to reflect the relative importance of the various interests they further or thwart, then subtracting costs or 'disbenefits' from the benefits for each option. The course of action to be followed, then, is the one with the greatest net benefit to the patient. The decision therefore does not just take into consideration the perceived medical benefits to the patient. For example, it is not simply a matter of deciding whether the patient has a reasonable chance of recovery or not. Rather, as suggested by the USA President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioural Research 3, it involves a consideration of factors such as the following: •
the relief of suffering
•
the preservation or restoration of functioning
•
the quality as well as the extent of life sustained
•
the satisfaction of present desires
•
opportunities for future satisfactions
•
the possibility of developing or regaining the capacity for self determination.
However, a list such as this, describing which factors should perhaps be considered in making decisions based on the best interests principle, does not inform us about how benefits should be weighed up, which benefits are more important than others, and how the costs of various options should be factored in. For example, such lists do not inform us whether more (or less) importance should be given to the relief of suffering as opposed to the future possibility of regaining the capacity for self determination. Some interests (such as avoiding death and chronic suffering) would generally be considered, by most people, to be more important than others, but generalisations do not reflect individual preferences.
reasonable people choose in any particular circumstances. In any case, a generalisation about best interests based on the preferences of most informed and reasonable people does not respect a person's self-determination in the same way to which the principles of informed consent and substituted judgement are potentially able. The latter two concepts focus on the expressed perceptions and preferences of the individual, whereas the best interests principle reflects a generalised view that may or may not concur with the preferences of the individual. Furthermore, there will be cases, in all probability, where several equally reasonable courses of action will be possible, rather than one single alternative.
LITERATURE REVIEW Despite the difficulty of clearly articulating exactly how the best interests of a patient are to be determined, the best interests principle is often referred to by medical texts and guidelines for doctors' decision making about incompetent patients. Assumptions about best interests are intrinsically linked to assumptions about what is meant by quality of life or well-being. Many references to medical decision making assume that all readers possess a similar understanding of what is meant by 'quality of life', and therefore what is meant by 'best interests'. The pervasiveness of this assumption is well illustrated in texts such as Law and ethics in medicine for doctors in Victoria ~'~, a publication that was disseminated to all medical practitioners in Victoria, Australia. Although the book is promoted as "a practical guide to significant ethical obligations and legal requirements which today accompany the practice of medicine" 5, the best interests principle is not addressed except in the context of children and the mentally ill. The authors do, however, make reference to Jennett's 7 indices of when a specific treatment may be deemed inappropriate and, although these suggestions are placed within a chapter focusing on limited medical resources, the suggestions do imply a reference to the best interests principle. Jennett suggests that treatment may be inappropriate if it is likely to prove: •
Unnecessary: because the patient is not seriously enough affected to need it or the desired objective can be achieved by simpler means.
Likewise, the list of factors does not tell us anything about, for example, degrees of suffering or functioning. That is, with the understanding that factors such as suffering and functioning do not tend to possess an all-or-nothing status, how to deal with questions about to what degree should functioning be restored or preserved, or to what degree should suffering be eliminated, remains unclear.
•
Unsuccessful: because the patient has a condition too advanced to respond to or benefit from treatment.
•
Unsafe: because the risks outweigh the probable benefits.
•
Unkind: because the quality of life following the treatment is not likely to be good enough or long enough to justify such treatment.
It has been suggested that these questions can be dealt with by interpreting the best interests of the patient as the alternative that "most informed and reasonable persons would choose in the circumstances" 4. Therefore, according to Brock, the best interests principle is similar to the informed consent and substituted judgement principles because it is understood as requiring the selection of the alternative that the patient, if informed and reasonable, would have chosen him or herself, had he or she been able to do so.
•
Unwise: because it diverts resources from activities which would benefit others to a greater extent.
All three principles implicitly employ an "account of the good life that is a life of choice and self-determination (autonomy) concerning aims, values and life plan" 4. We seem to be left, however, with the question of what would most informed and
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Plueckhahn et al. 5 describe the above points as reasonable guiding principles that have been part of good medical practice for a long time. The trouble though, is that these so-called 'guiding principles' are based on many unquestioned assumptions about doctors being able to judge quality of life, to weigh up risks and benefits, and to decide on a fair distribution of resources. There does not seem to be any firm basis for these assumptions, except that, traditionally, doctors have made medical decisions based on their individual conceptions of what is meant by 'quality of life', and, in the case of limited resources, a learned ability to choose between lives.
NOVEMBER 2001
AAA ~'\\ .... AUSTRALIAN CRITICAL CARE
A further example of the assumed shared understanding of the concept of quality of life is a widely recognised document outlining guidelines for intensive care medicine, published by the European Society of Intensive Care Medicine s, which states that "patients with no chance of recovering to a reasonable quality of life should not be admitted to the ICU". These guidelines imply that the doctors making decisions regarding the provision of intensive care understand what a reasonable quality of life is, and are able to determine whether the patient will or will not have a reasonable quality of life following discharge. Furthermore, even many texts written with a specific focus on the ethical aspects of intensive care practice do not question this assumption. For example, Mayo and Bennett 9 state that decisions regarding the provision of intensive care should be guided by the principles of autonomy and a burden/benefit analysis. They claim that where the "burden of treatment might be so great as to outweigh the benefit of prolonging life, or life itself might be seen as a burden which would be magnified by even a minimally burdensome life-prolonging treatment", life-sustaining treatment should be withheld. However, the authors do not explain how one is supposed to judge whether life is a burden or not, nor how one should deal with potentially conflicting claims arising from the principle of autonomy and a burden/benefit analysis. These sorts of recommendations demonstrate a lack of conceptual analysis of the issue and, in doing so, assume that the reader possesses not only a coherent understanding of principles such as autonomy and burden/benefit analysis, but that a common or shared understanding of these principles, between individual readers, exists. It is evident that guidelines currently available for use by the medical profession that purport to assist doctors to make decisions based on the best interests of the patient are seriously lacking in necessary detail, both in terms of conceptual framework and practical application. In the context of decision making about the provision of intensive care, available guidelines are so vague as to be practically useless. However, these sorts of guidelines should not be dismissed on the grounds that they are useless, and therefore harmless or vacuous. What they serve to do is to reinforce the apparent status quo; the ethos of unquestioned and uncritical assumptions about how the concept of quality of life is interpreted.
QUALITY OF LIFE The best interests standard is fundamentally linked to prudential value theory which is, in turn, concerned with what makes up an individual's well-being (or what gives his/her life prudential value or quality). Accounts of prudential value, utilised in the discussion of patient's best interests, often tend to be presupposed and naive ~0, and the recommendations and so-called decision making guiding principles discussed in the preceding section are illustrative of this naivety. Because it tends to be assumed that the community generally shares a common understanding of the meaning of 'quality of life', references to this concept may be taken to imply "binding prescriptions and proscriptions in relation to how a given individual human life ought and ought not to be regarded .... However, despite the apparent importance of quality of life as an integral component of guidelines produced in order to expedite health care decisions, it is very difficult to articulate exactly what we really mean when we refer to quality of life. The problem with
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this state of affairs, this non-explicit, yet assumed common understanding upon which the so-called guiding principles for medical practice are dependent, is that it masks the existence of disparate conceptions of quality of life. Therefore, it is likely that some decisions are being made about the provision of intensive care (and health care in general) that are, in fact, not in the best interests of an individual patient. Furthermore, this widespread assumption that we possess a shared understanding of what is meant by quality of life means that decisions that appear to be based on quality of life criteria may be unlikely to be questioned, even by those directly affected. However, there is, in fact, enormous potential for making moral errors TM~z There exist many theories that attempt to explain quality of life or well-being - these may be roughly divided up into subjectivist and objectivist accounts. A subjective account is one which refers to the individual as being the determining agent in the provision of a description of that person's good. Subjectivist accounts tend to be referred to as utilitarian accounts. This is so because they often take the concept of well-being to equate with utility. Utility, in turn, may be perceived to be related to, or to represent, either a particular mental state (for example, pleasure or pain) or states of the world which fulfil desires ,3 Conversely, an objective account does not interpret the individual's own view of their situation as determining their well-being, but refers to other factors. Objective accounts traditionally focus on the notion of 'need' rather than desires. The need account is considered objective because its standard "rests on aims flowing from human nature and not on any flowing from a person's particular tastes, attitudes or interests" 13. Well-being, according to this account, can be defined as the level to which basic needs are met - basic needs defined roughly are what we need to survive, to be healthy, to avoid harm and to function properly. It is possible to define basic needs broadly as 'characteristic of human existence' (thereby implying that they connect with ends that we do not choose), or a minimum basic need as that which most persons have. Therefore, basic needs consist, for example, of adequate nutrition, shelter, health, body integrity, and the absence of consuming pain and suffering ~4. However, both subjective and objective accounts of quality of life are deficient predominantly because they each do not recognise features of the good found in the other account. This fundamental concern relates to what each account leaves out, rather than what each includes. Ideal accounts of quality of life counteract this problem by consisting partly of the realisation of specific, explicitly normative ideals, while also acknowledging a plurality of component ideals that place constraints on and/or supplement the extent to which happiness and/or preference satisfaction serves a person's good ~. Therefore, from an ideal theory perspective, when a decision must be made regarding life-sustaining treatment, what should be assessed is how the condition of the patient's life affects (or will affect in the future) the value of life to that patient and whether the patient is competent or incompetent. The role of quality of life judgements in these sorts of decisions may be extremely limited, particularly where the focus is on a threshold question asking whether the quality of life is, on balance, so poor that existence would be worse than non-existence. It is evident, however, that for both competent and incompetent patients, ideal theories of wellbeing are able to offer more than subjective or objective accounts,
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because they include the preferences (subjective conscious experiences and informed desires) of the individual in addition to objectively ascribable material facts and a normative evaluation of such facts.
ethically defensible decision making. Furthermore, it is suggested that the inclusion of the close family of an incompetent patient in the decision making process ought to be supported whenever practically possible.
Therefore, to make a decision about intensive care treatment based on the best interests principle (on behalf of an incompetent patient), it is evident that a judgement about the patient's future quality of life is required. In this situation, it is recommended that an ideal theory of quality of life be referred to. Further, in order to gather the required information, it seems imperative that the patient's closest relative(s) is involved in decision making, as it is this person(s) who will be able to reiterate the patient's preferences and values. For example, it is this person who will best be able to say (at least with the greatest degree of accuracy) whether the patient would wish to continue intensive care treatment despite a high probability of intractable pain, loss of bodily integrity and functioning associated with survival.
REFERENCES
There are many arguments in the philosophical literature that both support and argue against the role of family in decision making when the patient is incompetent. However, on balance, it is preferable to include the patient's close family in decision making about acute care simply because they are best placed to understand the patient's values and beliefs (the subjective component of an ideal theory of quality of life) that influence objective components of quality of life.
CONCLUSION This paper critically examined the best interests principle and its role in making decisions about intensive care treatment. In current practice, the best interests principle is sometimes relied upon to guide decision making in circumstances when the patient is incompetent, although it may be intrinsically linked to inconsistent assumptions about what is meant by quality of life. This situation means that there is potential for moral errors to be made that may result in an unwanted extension of life for some individuals or the premature death of others. It is acknowledged that practical difficulties encountered in the clinical setting, such as the haste with which some decisions must be made, impact on the decision making process. Nonetheless, it is argued that a greater understanding of the best interests principle, and consequently the concept of quality of life, may result in more
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