> Limitations of the Best Interests and Substituted Judgement standards (DIDMSNJ)

DIDMSNJDying In Dignity Mensa Sig News Journal Vol 3 Issue 1


Limitations of the Best Interests and Substituted Judgement standards

Chris Docker

A brief argument to suggest that the lawís current mechanisms for making decisions about incompetent persons are inadequate.


Introduction

The law has attempted, and continues to attempt to provide, a stopgap for certain socio-medical shortcomings. For a competent adult patient, the law, medicine and ethics are in agreement about only proceeding with treatment which is acceptable to that patient . Whether we argue from a utilitarian viewpoint to maximise the greatest good for the greatest number, or whether we present a Kantian or duties-based argument, the result is largely uncontroversial. In the case of the incompetent patient, however, I hope to suggest that existing mechanisms are inadequate, even if they are the best that can be offered from a legal context.

The American system relies heavily on the substituted judgement standard.(1,6,15,19) The system, which is some 15 years old, seeks to identify a surrogate to make the decision that the patient would have made - putting oneself in the patientís shoes as it were. It relies and falls on the premiss that the surrogate knows something of the patientís preferences as expressed when the patientís decision-making capacity was intact. The fallacy of such an assumption is demonstrated by a large number of studies(10,14,16,22) and, although it still has heavy support in law, there is little controversy about the inability of surrogates to make substituted judgements. For instance, in studies of paired patients and nominated proxies, even though 90 per cent of patients predicted that family menbers would accurately predict their wishes, those family members were unable accurately to do so. Doctors fared no better, although doctors who had been well acquainted with their patients over a long period of time - something that rarely happens now - fared very slightly better.

If family members, courts and doctors are unable to guess or ascertain what a patient would have wanted, there is no rationale for the substituted judgement standard. Notwithstanding this, the English Law Commission is seeking legislation for Continuing Powers of Attorney that would encourage such proxy decision making.(17)

But before turning to what I believe might be acceptable, if partial, alternatives, I will briefly examine the main standard of decision-making for incompetents in use on the UK - that of .

The best interests standard asks the surrogate to decide the course of action that promotes the patientís interests according to what most reasonable persons would choose.(15) The English Law Commission is sensibly attempting to widen this formally, to include any evidence of the patientís expressed preferences.(17)

Unfortunately, few people express such preferences in advance,(5) or express them clearly enough, or express preferences that are applicable to the circumstances that arise. Hence we have the choice of making weighty decisions on the flimsiest of evidence, or of making decisions based on what we might falsely assume any reasonable person would want. Of those cases where express preferences have been made known in advance, such preferences are frequently ignored.(5) Studies demonstrate that not only do patients preferences vary very considerably for given treatments but that medical bias(3) influences which treatments are given or withdrawn.

Attempting to reinforce such flimsy mechanisms with legal protocols will not better equip them to perform the function for which they are intended and will, in the end, only further cloud the issues. Just as a case can be over-medicalised, by treatment of the disease and symptoms, in isolation from the patient as an individual with individual preferences and circumstances, so can legalism, by applying rules that may be inappropriate in an individual circumstance, hinder rather than help the execution of justice and good medical practice; formal rules based on inadequate assumptions should instill us to find better answers rather than mere acceptance of those rules.(12)

The two Standards fall principally on the practical difficulty in obtaining sufficient evidence of patient preferences, whether actual or that of the supposed reasonable patient. If such information could be obtained, either standard could perhaps be made to work, but as that would rely on the advance cooperation of all patients it is not likely to happen. Given that some patients will, however, cooperate, there is no need to discard such standards, only to improve their workability whilst simultaneously developing mechanisms to take the pressure off these over-used devices.(21) I would like to present some short proposals for such mechanisms.


Proposals

1.Institutional guidelines on specific situations

2.Transparency of resource allocation

3.Empathy and compassion as tools of the nurse advocate

4.Development of a family-based ethic

5.Preferences derived from communities of patients


Institutional guidelines on specific situations

Modern technology has brought with it a range of associated problems such as PVS and the applicability of CPR or antibiotics in dementia. Developing medical ethics has sought to emphasise patient autonomy as the main or sole criterion for decision-making, extending this principle by tortuous devices into the area of decision making for the incompetent adult.(2) This has perhaps contributed to lack of development of contiguous mechanisms that might be ethically viable. The debate on PVS, while far from concluded, has brought diagnosis to the level where, in some cases, it is known with certainty that the brain is destroyed and no medical treatment can restore it or any quality of life. Continuing treatment not only may be construed as an affront to dignity, whether the dignity afforded to a person or a corpse, but will, if we are talking about NHS resources, inevitably result in reduction of medical treatments available to other patients. At the moment, such decisions to stop treatment in PVS can only be taken by a court - again, involving an even further drain on the sorely pressed public purse. The process of decisionmaking through consultation in Scotland has given way to formal court hearings, which in turn attempt to invoke a best interest standard. I submit it could be better developed by means of institutional guidelines developed by the professional associations. Guidelines could be developed for other conditions as well as PVS where the patientís preference is no longer the most relevant factor.(8)


Transparency of resource allocation

I wonít attempt in this essay to consider what I believe to be an inadequate system of resource allocation in this country, but will mention for consideration what I see to be a great danger to equitable decisionmaking - the lack of transparency in health care resource allocation. We need to stop the lie of infinite resources for any need that is deemed great enough - there is no way that such resources can be found. But we have a duty to make the decisionmaking process more open. Patients need to know what they can reasonably expect and also what they can not reasonably expect the public purse to provide. They need to know the limitations and inadequacies of hospitals and the decisionmaking and resource allocation processes, and come to terms with them. When we have done this as a society, we may also be able to pave the way for change in this area. Even if the best interests of a patient can be ascertained, there may be insufficient funding available to serve them. Instead of pouring so much effort into desperately trying to discover what the patient would want and then presenting the harsh disappointment of reality, it might be more equitable to present the availability of choices and then encourage development of patient autonomy within the scenario of those practically available options.


Empathy and compassion as the tools of the nurse advocate

Over-reliance on science and social science is at the root of much of the failure of the best interests and substituted judgement standards. Studies have suggested that compassion is a necessary fuel for insight and effective information gathering concerning the patient and factors that might affect decisions regarding that patient. Compassion heightens our awareness of a situation(4) though without, of itself, helping us to form better moral judgements.(18) Nurses are ideally placed to utilize compassion a)because of their increased contact with patients and significant others, b)because more nurses are women and studies have suggested an increased capacity for compassion in women, and c)the nurseís institutionalised role as patient advocate(7) - and I note that it might be necessary to accord more formal recognition of this role.

The nurse advocate might potentially be able to give a broader based picture than could otherwise be obtained. Within a best interests framework even, the nurse might better be able to provide the necessary information, but the advantage of developing this platform over reliance on the law of best interests, is that it allows greater flexibility to consider the context of information, short of court hearings, and were legislation to become overly prescriptive, better flexibility than even the courts.


Development of a family-based ethic

The best that medical practice currently aspires to in its ethical decisionmaking is respect for the autonomy of the patient within a doctor-patient relationship. While it is a necessary basis(21) from which to start, it is severely limited, and its lack of practical development contributes in no small part to the unfairness which best interest and substituted judgement standards are forced at times to perpetrate. Family members and significant others, whether healthy or ill, have their own autonomy which needs to be respected.(13) Community morality may also have a valid part to play. Family and community may have to bear the brunt of medical decisions about an individual when that patient is discharged from hospital or kept in. Such considerations suggest that decisionmaking should be broader based than focussing exclusively on the patientís supposed autonomy. Legal requirements of best interests and substituted judgement make no allowance for this and may also fail to serve the patient well. The nurse advocate is again ideally placed to develop such an ethic, as long as we do not over-medicalise that profession as we have done with the doctorís. While the patient is the chief player in the drama, recognition that medical decisions should not be taken in isolation from non-medical factors and persons other than the patient is also fundamental.(11,13,20)


Preferences derived from communities of patients

Finally, in identifying patient preferences, undue weight may be given to the unexpressed or expressed wishes of the patient. It is well established that patients often make poor decisions on the basis of inadequate understanding; it is also well-established that their treatment preferences frequently change with increased understanding. Most patients express no advance preferencesfor treatment in incompetency(5) and identifying applicable preferences may place quite unreasonable weight on dubious information. The practicality of getting all patients to provide adequate and well-informed treatment preferences in advance of incompetency may be impossible, beyond our resources as a nation, or an undue invasion of competent personsí willingness to consider and provide such information. A well-considered default position is therefore necessary. What we do know is that specific groups of patients tend to make similar decisions.(5) Such population groups might, for instance, turn out to include long term nursing home residents in a certain age band. As concordance within a group might not be 100 per cent we have to acknowledge the imperfect nature of such a default, but it is less imperfect than most of the current attempts to devolve decisions to surrogates. The initial research to identify preferences of specific communities of patients would be financially and ethically justified by its long term contribution to a solution. By comparison, the present attempts to strain the limits of substituted judgement and best interests are like wet earth in the holes of a dyke.

References

1.Brett A. Limitations of Listing Specific Medical Interventions in Advance Directives. Journal of the American Medical Association 1991; 266(6): 825-828.

2.British Medical Association. Medical Ethics Today. London: BMA 1993

3.Christakis N, Asch D. Biases in How Physicians Choose to Withdraw Life Support. Lancet 1993; 42:642-646.

4.Downie R, Calman K. Healthy Respect: Ethics in Health Care. 1994 OUP.

5.Emanuel L, Emanuel E. Decisions at the End of Life Guided by Communities of Patients. Hastings Center Report 1993 Sep-Oct; 6-14.

6.Emanuel E, Emanuel L. Proxy Decision Making for Incompetent Patients: An Ethical and Empirical Analysis. Journal of the American Medical Association 1992

7.Fletcher N, Holt J, et al. Ethics, Law and Nursing (1995) Manchester University Press.

8.Fried T, Gillick M. The Limits of Proxy Decision Making: Overtreatment. Cambridge Quarterly of Healthcare Ethics (1995) 4: 524-529.

9.Re G: Incompetent Patients in PVS: Views of Relatives and Best Interests MLR [1995] 80.

10.Gillick M, Fried T. The Limits of Proxy Decision Making: Undertreatment. Cambridge Quarterly of Healthcare Ethics (1995), 4:172-177.

11.Hardwig J. SUPPORT and the Invisible Family. Hastings Center Report 1995 July/August, Special Supplement: G22-G25.

12. Hardwig J. The Problems of Proxies with Interests of Their Own: Towards a Better Theory of Proxy Decisions. Journal of Clinical Ethics 1993 Spring: 20-27.

13.Hardwig J. What About the Family. Hastings Center Report 1990 March/April:5-10.

14.Hare J, Pratt C, Nelson C. Agreement between Patients and Their Self-Selected Surrogates on Difficult Medical Decisions. Archives of Internal Medicine 1992 May; 152: 1049-1054.

15.Hoefler J Deathright: Culture, Medicine, Politics, and the Right to Die. Oxford: Westview Press 1994.

16.Lambert P, Gibson J, Nathanson P. The Values History: An Innovation in Surrogate Medical Decision-Making. Law, Medicine & Health Care 1990, 18(3):202-212.

17.Law Com No 231 Mental Incapacity 1995 HMSO

18.Loewy E. Compassion, Reason, and Moral Judgement. Cambridge Quarterly of Healthcare Ethics (1995) 4: 466-475.

19.Lowy C. The Doctrine of Substituted Judgement in Medical Decision Making. Bioethics 1988; 2(1):15-21.

20.Martyn S. Substituted Judgement, Best Interests, and the Need for Best Respect. Cambridge Quarterly of Healthcare Ethics 1994; 3(2):195-208.

21.McLean S. A Patientís Right to Know - Information Disclosure, the Doctor and the Law. Hants: Dartmouth 1989.

22.Seckler A, Meier D, Mulvihill M et al. Substituted Judgement: How Accurate Are Proxy Predictions? Annals of Internal Medicine 1991; 115(2): 92-98.

23.Weiler K. Substitute Decision Makers in health care treatment decisions. Journal of Professional Nursing 1991 Sep-Oct; 7(5): 268.



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© 1996 Chris Docker.
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