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.