Patient L’s Autonomy

‘Patient L’ is a man in a vegetative state, under the care of Pennine Acute Hospitals Trust. The Trust has placed a Do Not Rescuscitate order in his notes, yet his family claim that he himself would want to be revived if his condition deteriorated, because of his faith in Islam. The court of protection has now decided in favour of the Trust.

The Trust’s claim is that it is in Patient L’s best interests to be allowed to die, whereas Patient L himself – if we are to believe his family (and there seems little reason not to) – would almost certainly disagree.

But in fact whether he would agree or not isn’t what is primarily important in this case, since the central question is not whether the treatment is in his best interests. In our current medical culture, it is standard to seek informed consent from a patient, allowing him or her to make a decision about her own interests and whether she wishes to promote them or not. Of course, in this case it is impossible for Patient L to consent, and he appears not to have written a living will in any form. But the next-best option is surely not to treat the patient in the light of some conception of interests of the doctors’ own, especially one which the patient himself would probably not have accepted. It is to ask what he would have wanted had he been asked. And here the patients’ relatives’ views are crucial.

The distinction between acts and omissions might be introduced at this point. The Trust is proposing not some form of treatment, but the withdrawal of treatment. But it is clear that, whatever the moral weight of this distinction in other cases, it is not especially important in the case of DNR orders. Patients or their relatives are, and should be, consulted before such decisions are taken (this appears not to have been done in the case of Patient L).

Nor need we see an important practical conflict here between autonomy and interests. Autonomy – the running of one’s own life – might plausibly itself be seen as an interest; and there are plausible long-standing liberal arguments that respecting autonomy is instrumentally valuable, since people can – especially in the context of widespread reasonable and conscientious disagreement – be assumed to be the best judges of their own interests.

 

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8 Responses to Patient L’s Autonomy

  • The article you link makes it clear that the motivating issue here is not the patient’s autonomy (by way of the family’s substituted judgment), but rather the fact of the futility of the treatments requested.

    Substituted judgment is the attempt to preserve patient autonomy in cases where no clear direction can be obtained from the patient themselves (i.e., where the patient left no relevant advance directive and has not designated an authoritative proxy). In such a case, family members are usually the presumptive surrogates for the patient, and are expected to act in keeping with the patient’s preferences and values. If the family members in this case actually know the patient’s own preferences arising from his religious beliefs (and are not just stating their own religious beliefs and imputing them to the patient), then typically those instructions would be regarded as authoritative – again, as an (indirect) expression of the patient’s own preferences. But that by itself does not necessarily determine the outcome in every case.

    There are times when patient preferences conflict with other priorities, even where autonomy is respected as an important principle. In cases in which patients have no possibility of benefiting, physically or psychologically, from a given treatment, and where providing that treatment (especially over a long or indeterminate period of time) is harmful to the patient, expensive to the provider, or takes resources away from other patients, it can be argued that such treatments should not be provided even if the patient would have wanted them. In such cases, the possibility of harm to the patient (or the possibility of the waste of resources) is the morally determinative issue, given the impossibility of benefit to the patient requesting the futile treatment.

    In this particular case, the article you link notes that “unanimous medical opinion” has determined that resuscitation would result in “harmful interventions without any realistic prospect of such treatment producing any benefit”. That is a clear statement of medical futility, one which was reaffirmed upon reassessment of the patient’s condition.

    Furthermore, it is not correct that “The Trust is proposing . . . the withdrawal of treatment”. The article makes clear that (as you note) the Trust has only activated a Do Not Resuscitate order – that is, an order not to initiate treatment in the event of a life-threatening incident which has not yet occurred. It is not proposing terminating any current treatments. The rationale is that resuscitation efforts – CPR, intubation, and other invasive treatments – are often very debilitating (CPR usually breaks the patient’s ribs, and intubation for mechanical ventilation is extremely uncomfortable and often requires anaesthetization). In the cases of severely compromised patients (apparently including this one), resuscitation rarely leads to recovery, but often a prolonged period of dying with considerable suffering.

    It is not clear in this case that patient autonomy, even through the medium of substituted judgment, is being violated. That would at least require evidence that the family’s statements of religious beliefs truly reflect the patient’s own beliefs and not theirs. But even leaving that aside, the case has clearly and obviously been defined as one of medical futility. In the opinion of multiple doctors, the patient is not going to benefit from emergency resuscitation, and will suffer harm and discomfort if it is attempted. The doctrine of futility indeed runs counter to unabridged autonomy, but it is a necessary prevention of the imposition of harmful (and potentially wasteful) treatments in cases where that would do more harm than good.

    Cases such as these are wrenching, but they are an inevitable consequence of a state in which medical technology is not always beneficial, and patient (or family) demands do not always take that fact into account.

    • Roger Crisp says:

      Thanks, Kevin. I am inclined to agree with much of what you say. I was really trying to bring out how Patient L’s autonomy has been ignored, not to suggest that this consideration was overriding. But I would want to note again the disagreement between Patient L’s relatives (who probably represent Patient L’s own views) and the Trust on what is in Patient L’s best interests. They can not unreasonably claim that the medical treatment in question would not be futile. It is not at all absurd to think that it is good for one just to be alive as, say, an object beloved by one’s family or one’s god. (You’re quite right about withdrawal of treatment. I should have said ‘opportunities for treatment’.)

  • Joanne Gordon says:

    In this case the Court of Protection had to decide between two positions:

    1) the medical position that resuscitation would be harmful and provide little if any benefit, and
    2) the family’s position that this gentleman should be kept alive as long as possible.

    Understandably the court ruled in favour of the Trust given the evidence that resuscitation would be harmful and ‘futile’. Although there are many arguments for not singling out CPR as an opt-out option at the end of life and not discussing it with relatives, I think more emphasis should be placed on how these conflicts are ethically resolved, i.e. the process rather than the principles.

    How do we think the relationship between this gentleman’s healthcare staff and family will be affected by the court proceedings? I would suggest it will probably further deteriorate. Indeed we can see this by the solicitor’s claim that she will now pursue a clinical negligence case.

    If we put the positions aside, I think we can see that there are underlying interests which are not met by a court appearance. Interests are those motivating factors which lie hidden underneath positions. The family were upset that a DNR order was made without their knowledge and perceived poor care, as per the family’s solicitor. Their interests seem to be a better relationship with the healthcare staff and more information and explanation and perhaps an apology. The doctors’ interests were to give this gentleman the best appropriate treatment and resolve the conflict on the ward (which is probably very demoralising for all involved). A court battle over positions has just aggravated things.

    I’m not suggesting that court cannot be avoided in difficult cases or in this case in particular. However, I think we should focus some of our attention on how we should ethically deal with these conflicts before they get to this stage which will necessitate work on communication ethics etc.

    Mediation seems to be one viable alternative. However, who should conduct this and whether it should be facilitative (encouraging discussion) or evaluative (making treatment decisions) is another question which needs to be addressed. Should there be, as I have seen in some hospitals, dubiously-titled ‘end-of-life coordinators’?

    One thing seems to be true: we cannot ask doctors to do all this work in the current climate as 1) they don’t have time, 2) they don’t bring the desired ‘neutrality’ or perhaps what should better be described as a ‘perceived neutrality’ to the table.

    Positions and principles only take us so far. We need to find ethically defensible ways of identifying and resolving underlying interests before blunt legal precedent is turned to for final arbitration.

    • Roger Crisp says:

      Thanks, Joanne. I agree completely. More discussion is the only way to resolve these matters practically, if they can be resolved. And I believe that the patient’s beliefs and wishes regarding their own best interests should be given priority wherever possible, as long as they aren’t unreasonable.

  • Anthony Drinkwater says:

    I wonder whether autonomy is really the issue here.
    If someone autonomously asks their GP for antibiotics for a viral infection, or homeopathic medicine for whatever, I doubt that many of us would argue that the GP should be obliged to comply.
    Whilst it was insensitive for the Pennine Trust not to have discussed the DNR «order» with the family, I doubt that this influenced the outcome, based on a «best interests» criterion.
    Fortunately, although similar conflictual cases make the headlines, they are far from typical : we should beware taking moral positions based on a small minority of cases.

    • Roger Crisp says:

      Thanks, Anthony. But these requests would be unreasonable. Patient L’s relatives’ request wasn’t.

  • ezio says:

    I wonder what kind of considerations are supposed to justify the appeal to the family’s views: (a) it could be purely epistemological considerations, on the grounds that the family will be best placed to know what the patient would have wanted; (b) it could be another kind of epistemological considerations according to which, whether or not the family can be taken to know what the patient would have wanted, the family’a own views are a good guide to what the views of the patient were or would have been (there is plenty of empirical evidence for these kinds of similarities); (c) or it could be non-epistemological considerations, some sort of right or similar of the family to decide/reconstruct the patient’s views, based on family ties. this would not be the same as deciding what should happen to the agent, which the family might have a right or similar to do independently of (c).
    now, (a) and (b) don’t seem to be what’s actually at work on most justifications, but I can’t see any good reasons for (c).

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