Terminal Illness and The Right Not to Know

The parents of a young woman named Vickie Harvey, who tragically died at the age of 24 from acute myeloid leukaemia, have launched a campaign to give patients the right not to know that they are terminally ill.  Eric and Lyn Harvey claim that their daughter lost the will to live when, after her leukaemia returned following a period of remission, doctors told her ‘in graphic detail’ how she would now succumb to her disease. Eric Harvey told the Daily Mail:

After [Vickie was about her prognosis] she changed – and never really got out of bed again. We knew she was dying, but we feel that, if she hadn’t been told that day, she would have lasted longer’.

Mr Harvey claims that prior to this consultation, Vickie had expressed a wish to not hear anything negative about her illness, since she didn’t want to lose hope. However, he also describes how one of Vickie’s doctors had argued that Vickie ought to be given information about her prognosis so that Vickie could prepare herself, despite Mr and Mrs Harvey’s views to the contrary. Following Vickie’s death, Mr and Mrs Harvey are campaigning for the introduction of a waiver that would allow patients to opt out of being given bad news; the online petition for ‘Vickie’s wish’ has over 6’000 signatories.

This is undoubtedly a tragic case; however, many ethicists have argued against the ‘right not to know’ that the Harvey family are campaigning for. This is despite the fact this right seems to be implicitly recognised in international legal conventions. For example, the Article 10(2) of the European Bioethics Convention states:

 

Everyone is entitled to know any information collected about his or her health. However, the wishes of individuals not to be so informed shall be observed.

 

One of the main arguments against the right not to know in the context of terminal illness is that failing to inform patients of the fact that they are terminally ill and of their likely prognosis is that this will undermine the patient’s autonomy. Proponents of this view claim that an awareness of this information is necessary for the patient to make autonomous decisions about their future.

However, Vickie Harvey’s case indicates a tension with regards to patient autonomy in the context of terminal issue and disclosure, since Vickie had herself made the decision (let us presume autonomously) that she would prefer to remain in ignorance about her prognosis and how her disease would end her life. Here, it is not immediately clear what the principle of respect for autonomy requires; however, I shall suggest that it speaks most in favour of not disclosing certain information in this case, and thus in favour of a (defeasible) right not to know.

To begin to make this argument, it is important to distinguish two different things that the principle of autonomy can demand of us. First, and perhaps most obviously it can demand that we respect the autonomous choices that a person has made; for instance, the principle might enjoin us to respect a patient’s decision to refuse a treatment that is necessary for saving her life. Furthermore, this might also require that we also facilitate an agent’s effective pursuit of the end that they have chosen to pursue.

However, the principle of autonomy is also often interpreted as demanding that we facilitate an agent’s ability to now make an autonomous decision. A salient way in which we can enhance an agent’s ability in this way is by providing them with accurate information that is relevant to their choice. Whilst there might be some threshold level of information that an agent must understand in order to be autonomous with respect to some decision, it also seems that an agent’s autonomy can be facilitated in this way to varying degrees. However, a general rule of thumb seems to be that providing an agent with more relevant information about their choice domain (that they are able to understand) will enhance their autonomy with respect to their decision.

It seems that one of the reasons why there is so much debate about whether the right not to know is in keeping with the principle of autonomy is that in situations in which the patient expresses an autonomous wish not to know certain information, the principle of autonomy seems to enjoin two mutually exclusive courses of action; should the doctor respect the patient’s autonomous choice, or facilitate their future autonomy? What is it to respect autonomy when such conflicts arise?

In order to establish how to adequately respect autonomy in such cases, we need to return to the reason that we place such high value on being able to make autonomous choices and having our autonomous choices respected. It seems that one plausible explanation for why we place such high value on these things is that we believe that being able to make autonomous choices and having them respected by others is an integral part of being able to live a life that is our own, one that is lived in accordance with our own goals and values. If this is correct, then it seems plausible to claim that when deciding how best to respect another’s autonomy, our decision should be guided by an assessment of how we can best help the agent in question effectively pursue their own goals and values.

This observation, I believe, speaks in favour of an autonomy-based defence of a right not to know in the context of terminal illness, since the expression of an autonomous desire not to know suggests that the agent in question values certain things above being autonomous with respect to certain choices in the future.

Reconsider Vickie’s case; prior to having her prognosis disclosed to her, Vickie already knew that she had a very serious illness. Now, it seems correct to claim that this knowledge was essential to Vickie’s autonomy; for instance, it allowed her to make autonomous choices about her possible treatment options and give her the best chance of prolonging her life. Was further information about her likely prognosis similarly necessary to her autonomy when she fell into remission? It might be claimed that such information was necessary for Vickie to make certain choices concerning the end of her life in an autonomous manner. However, an integral part of being an autonomous agent is that such agents are able to make their own decisions about which of their goals to prioritise when their goals are mutually exclusive. In view of this, we need not understand Vicky as sacrificing her autonomy all things considered when she expressed a desire not to be informed of her prognosis. Whilst remaining ignorant about this information may have undermined her local autonomy with regards to certain choices in the future, it seems that remaining ignorant of this information was also necessary for her to effectively pursue an end that she herself deemed to be more valuable; namely, living the remainder of her life with some small degree of hope, and without an over-bearing fear of death.

I believe that respecting Vickie’s autonomy required not disclosing distressing information regarding the process of her disease and her prognosis. Indeed, even whilst this disclosure may have been made in the name of patient autonomy, it in fact seems to be the height of paternalism to ignore Vickie’s own decision about the effect that knowing this information would have on her pursuit of the goals and values that she had decided to prioritise in the tragically short time left to her.

 

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5 Responses to Terminal Illness and The Right Not to Know

  • Anthony Drinkwater says:

    Thank you for this post, Jonny.
    From what we read, and what her parents say, it seems evident that Vickie did not want to have her prognosis spelt out to her, and any doctor listening actively and observing her behaviour with empathy should have realised the additional suffering this could cause. On the face of it the decision is indeed “the height of paternalism” – “You say you don’t want to know, but I know better than you what’s good for you.”

    So I agree with your sentiments on this, but wonder whether the notion of autonomy is actually helpful at all.
    The concept of autonomy is often thought to be useful to oppose paternalism, but in this case the two are working hand in glove.
    Doctors should be treating patients as individual people and not as cases to be resolved abstractedly according to principles, however laudable they seem to be.
    But as this is an ethics blog, and we need at least one basic principle, doesn’t “First, do no harm” cover the situation ?

    • Isabel Rodríguez says:

      I believe that “To treat patients as individual people and not as cases” would also be one basic principle in ethics.

    • fdizmar says:

      I also agree that explaining to the patient what does not want to know is over-paternalism (so is in this case). Anyhow every patient has their peculiar connotations, that make general rules difficult to apply.

  • Nikolas Schaffer says:

    It seems obvious that there are practical considerations that would make it very difficult for a patient in these circumstances to remain unaware of their prognosis. A patient who doesn’t want to know that they’re dying may insist on treatment that the specialists know will be of no use, and it will be very difficult to refuse such treatment without explaining why, or without the patient guessing. At the end stage of terminal cancers there is no effective treatment except palliative care. Such care needs to be carefully chosen by the individual on the basis of quality-of-life criteria, i.e. an understanding that this is palliative, not curative treatment. Keeping the patient informed is not just an ethical consideration but pretty much essential to the practical task of providing adequate and appropriate care.

  • jonnypugh says:

    Thanks both for the interesting comments!

    Anthony – I agree that the concept of autonomy is difficult to apply in this case, but I am not sure that the principle of non-maleficence can cover all that we want to be able to say. My main reason for saying this is that it is not always clear who should decide what constitutes a harm for a particular patient. To illustrate, it seems that some doctors would understand the principle of non-maleficence to entail that it can never be permissible to bring about the end of a patient’s life on purpose; however, their patient may believe that to continue living is a greater harm to them than dying. Whilst this is an extreme case, it points to a more general worry about how we are to explain the concept of harm upon which the principle of non-maleficence lies; if we believe that the patient’s own understanding of what harms/benefits them comes into our assessment, as I believe it should, then it seems to me that respect for autonomy must play some role in ethical decision-making.

    Nicholas – I also agree with you that there will often be important practical barriers to keeping a patient in ignorance about their condition at their own request. However, I think the point I made about there being a minimal threshold of information that is necessary for autonomous decision-making can mitigate at least some of these practical concerns. Patients must know about their possible treatment options and what can and cannot be done for them in order to be autonomous with respect to their care decision; however, this is not the same as bluntly spelling out a prognosis of how and when they are likely to die. The devil of course is in the detail, but in general terms, I would suggest that patients need only be adequately informed rather than understanding every aspect of their disease, and how and when it will cause them to die. If the patient were to ask for futile treatments, I would suggest that they are not adequately informed about their current situation; they may even be in denial about it, and I would agree that the doctor would be justified in gently informing them that certain treatment options are not available for them and disabusing them of any false impressions that they may be under. Here though, I believe that the doctor could instead tell the patient what they can do for them, and set certain treatment goals for them, albeit goals that do not amount to curing their condition, but instead of improving their quality of life etc. I should also point out, that I am only suggesting that there is an autonomy-based defence of the right not to know; however, condsiderations of justice might override this right if, for example, the patient asks doctors to provide them with futile treatments that others could usefully use etc.

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