Dr. Robert Twycross was my sister’s doctor at the end of her life (link to my parents’ book) in the Michael Sobell House Hospice outside Oxford way back in 1977. He then worked closely with my parents in all their work on hospice worldwide, and remains a family friend.
When I engaged him in discussion about patient partnering, he pointed me to this very helpful language from his book, Introducing Palliative Care, the most recent edition of which is co-edited with Andrew Wilcock.
When considering autonomy, the recent focus has generally been on the patient, partly because of a revolt against medical paternalism. However, a more nuanced interpretation embraces the autonomy of both patient and professional. Thus, in practice, shared (‘principled’) autonomy means partnership between patient and professional. Both are experts: the patient in relation to the impact of the illness on their life and family, and the professional in relation to clinical evaluation and treatment options.
Thus, autonomy does not mean simply doing whatever a patient requests, as this is an abdication of one’s professional role. When there is persistent disagreement and a doctor still believes a certain treatment is inappropriate, they should iterate their reasoning and assist the patient in obtaining a second opinion.
Conversely, in the UK and many other countries, a person is not legally obliged to accept a clinician’s treatment recommendation, even if refusal results in earlier death.
However, most patients want partnership, and are generally happy to accept professional advice. Consequently, doctors have a legal obligation to discuss treatment options and their implications with patients, taking their values and wishes into account, and to obtain informed consent.
Without consent, a doctor risks being found guilty of assault.9 Likewise, ignoring the views of patients can lead to breaches of the law. Good communication is crucial to avoid misunderstanding. [References omitted.]
He also referred me to Stirrat & Gill, Autonomy in medical ethics after O’Neill.
J Med Ethics 31:127-130 (2005).
We believe that the individualistic version of autonomous choice is fundamentally flawed and that medical ethics should always be set in the context of relationships and community.5 We suggest a principled version of patient autonomy that involves the provision of sufficient and understandable information and space for patients, who has the capacity to make a settled choice about medical interventions on themselves, to do so responsibly in a manner considerate to others. We consider that this model best fits the optimal patient–doctor relationship in which there is a mutual, unspoken agreement between the parties that recognises the duties and obligations each to the other.23 Bilateral trust is at the heart of this relationship. [References omitted.]
Parenthetically, the American in me recoils from the description of the relationship between the parties as “mutual and unspoken,” or rather from the word “unspoken.” The Brit in me understands so well why it is there.
More generally, however, I find these descriptions particularly helpful in underlining that each member of the team brings something different, and that together the optimum decision is reached reflecting the medical team’s knowledge, skill and even wisdom, and also the patients knowledge needs, hopes and realities. As Robert says, all are experts, and all should respect each other both for that, and as human beings. For what is is worth, in one of these discussions, when my oncologist simply said to me (spoken, not “unspoken”): “I respect you,” it meant a lot.