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A radio series about the work of ethics committees, which demonstrates the web of personal and professional relationships that surround the patient journey, impresses Daniel K Sokol
David, a middle aged man with severe learning difficulties, has high grade lymphoma. With prolonged chemotherapy, the chances of cure are roughly 50%. The treatment, however, may prove traumatic for David, who is unable to speak and who earlier experienced great distress when undergoing computed tomography. Might palliative care be a better option?
Although clinical ethics committees (CECs) are a desirable and increasingly common addition to healthcare institutions in the United Kingdom, they are, in my experience, underused. “We need more cases” is an oft-heard refrain among committee members. Whatever the reasons for this paucity of referrals, BBC Radio 4's new series of Inside the Ethics Committee should raise awareness of the existence of CECs and convince even the ethics-sceptic clinician that reasoned discussion of a case can lead to fruitful conclusions.
Hosted by Vivienne Parry, each 45 minute programme presents a thorny case and examines the ethical issues with a panel of three experts, usually a mixture of clinicians and ethicists. The astute reader will already have noted that the resemblance to an actual CEC is limited, given the differences in size and constitution. It is thus a mini-committee, devoid of chaplain, lay person, and the other usual suspects. Another difference, and a great strength of the programme, is the involvement of key participants in the case. In the case of David described above, we hear from his psychiatrist, the manager of his care home, and a hospital clinician. In the second case, involving a severely anorexic 27 year old woman (Kate) requesting palliative care, we hear from the patient herself, her initial desire to improve her ballet dancing, and her descent into a world of fear, hopelessness, and guilt. We picture the situation through the words of Kate's mother and the psychiatrist who treated her following a paracetamol overdose. These multiple narratives highlight the complexity of the situation, the real life nature of the case, and the fact that patients are not isolated units, but embedded in a web of personal and professional relationships. No patient is an island, as the poet might have said. The various voices also prompt us to reflect on what is easily forgotten: that CECs deal with matters of consequence and that, to assume this considerable responsibility, committee members should be suitably trained.
There is a danger, in this kind of multi-guest programme, of digressing from the matter at hand. Vivienne Parry, the guiding Virgil and unsung hero of the show, excels in her role, keeping the discussion focused and flowing. In the case of David, she asks a series of perceptive questions on the pitfalls of substituted judgment and the subjective nature of assessing another person's quality of life, a theme that extends into the anorexia case. There is indeed increasing evidence that we are poor assessors not only of other people's quality of life but also the quality of our own life in the future. Harvard psychologist Daniel Gilbert, in Stumbling on Happiness (London: Harper Perennial, 2006) remarks that “most of us have a tough time imagining a tomorrow that is terribly different from today” and, to illustrate, “teenagers get tattoos because they are confident that DEATH ROCKS will always be an appealing motto.”
With the exception of a few comments, such as the dubious claim that a decision to provide or withhold life prolonging treatment is solely medical, the guests are articulate, well informed, and interesting, and the mix of expertise adds a welcome variety to the comments. They raise issues, such as the evaluation of best interests, the limits of respect for autonomy, and the status of advance directives in psychiatry, that although only touched upon in the programme could be developed further in a discussion group. One of the guests, for example, mentions the case of a competent patient with anorexia nervosa who, fearing that she will irrationally refuse treatment when below a certain weight, asks the health professionals to treat her if this should happen. This is sometimes referred to as a “Ulysses contract,” recalling Ulysses's request to be tied to his ship's mast before passing the island of the sirens and not to be released whatever he may say or do. Such contracts raise a wealth of practical and philosophical issues about desires, rationality, and autonomy. The programme could be a useful teaching tool in both undergraduate and postgraduate medical ethics courses.
So what happened to David? The actual CEC decided against chemotherapy, allowing David to return to his care home. Inside our mini-committee, two members concurred, and one disagreed. As for Kate, both CECs rejected her request for palliative care and suggested a compromise solution. The third programme examines the case of a healthcare worker who sustained a needlestick injury when treating one of the unconscious victims of the 2005 London bombings. Can she request an HIV test without the patient's consent?
Although I shall not yet tattoo “Inside the Ethics Committee rocks” on my arm, it is an intelligent and engrossing programme that should pique the interest of anyone concerned with the challenges of trying to do good.
Inside the Ethics Committee
BBC Radio 4, Wednesdays 8 pm to 8 45 pm, 29 August, 5 September, and 12 September (repeated Saturdays at 10 15 am)
Competing interests: One of the guests in one of the programmes is a colleague of DKS.