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Akabayashi et al1 presented us with an account of the difficulties when attempting to respect the patient's autonomy while we do not know the patient's own understanding regarding the autonomy we are attempting to respect. Most times we, as doctors, face difficult decisions, we do not have previous, reliable knowledge of the patients' views on the issue which we are finding difficult to resolve. Even previous discussions which happened far from the turmoil of cancer disclosure or similar events, can only be relied upon to a limited extent. We have all seen patients changing their minds in the face of catastrophe, in ways not only unpredictable to their doctor, but also to themselves. Transcultural study of the meanings and practice of individual autonomy provides a very useful way of extending our understanding of these issues, enlarging our horizons, as it does, beyond the anglo-saxon view.
The main point, however, is to construe a definition of autonomy which will encompass the cultural and individual variations of whatever autonomy stands for. Here I can only offer my view that autonomy stands for whatever enables the preservation of our identity. This view allows for the common conflict between individual and society: while we feel autonomous standing for what we feel ourselves to be, society can only understand our autonomy as the preservation of our social identity. If we act to change the view society has of ourselves, we will probably be criticised for being unduly influenced by someone, for not facing our responsibilities, or through some other form of discourse which just means “keep on being as we see you, so that we may keep on recognising you”. The extent to which social identity is important in defining the individual's view of his or her own identity is variable between cultures and between individuals. The result is the paradox reported by Akabayashi, of surveys showing that the majority of individuals in Japan would want to be told if they had cancer, but would not wish their relative to be told if the relative had cancer.
Autonomy is just a tool to carve and preserve our identity, and the relevant question is not: “How do you want to exercise your autonomy”, but: “How do you define yourself”.
This takes us to the main issue of the Akabayashi paper: the second-guessing process which enabled doctor and patient to study each other without committing themselves to a specific line of action. The purpose of the phrase used by the doctor was not to convey information, but to allow the patient to define herself. Even for a lay person, the phrase used did not convey any useful information. To be useful, the issues raised had to be explored, and the initiative rested with the patient. The use she made of that offer - “The ball is in your court now” - defined more than any answer could do.
This was an extremely elaborate way of exploring a patient's attitudes without intruding on those same attitudes, and, provided the patient is equipped to follow the events, an admirable example of respect for autonomy and patient identity. Our “duty” to convey information to the patient does not respect autonomy if it imposes information on the patient, as it were by default, whether the patient wants it or not. It is, however, a sign of our culture that elaborate mechanisms of communication are abandoned in favour of immediacy and clarity. It is likely that most Western patients are not equipped to follow this kind of communication, and it is not difficult to imagine Western patients asking questions when they do not wish to know the answer, if confronted with such an enigmatic phrase. Anyhow, I would contend that the principle that guided the doctor in this case is applicable to any cultural setting: to offer the patient the opportunity to face the decision he or she has to take, without feeling committed to a preset pattern of behaviour, and in such a way that the doctor will have feedback from the patient without having to convey the message the patient may well wish to avoid. Regarding the family, there are several issues to be considered. For instance, they may well want to protect the patient from news they feel he or she would be unable to deal with. Also they may well want to protect themselves from a situation they would not know how to deal with (like having a cancerous patient in the family) and which could threaten the stability of the family. It is also possible that the family might follow a cultural pattern, which they understand as the proper way to deal with these issues, with little regard for the needs of those involved, aiming for social approval.
Except in particular circumstances, doctors tend to know their patients much better than they know the relatives. Where conflict exists, this is probably another serious issue and the patient's attitude will have to be re-explored.
At the end of the day, the doctor is that patient's doctor, aiming at preserving that patient's physical health, but also that patient's wellbeing amongst his or her relatives. The stronger the family ties, the stronger the influence of “familial identity” in the patient's view of his own identity.
What we want to avoid is forcing things on the patient without knowing the patient's attitude towards what we are forcing on him.