Embracing the ethically complicated patientBMJ 2016; 354 doi: https://doi.org/10.1136/bmj.i3727 (Published 05 July 2016) Cite this as: BMJ 2016;354:i3727
All clinicians are familiar with the medically complicated patient. Those patients have, for example, overlapping illnesses, complex manifestations of symptoms, or uncommon reactions to treatment. They fill the pages of medical journals as case reports. They are the subject of grand rounds and departmental meetings.
Less celebrated is the ethically complicated patient. These are patient whose circumstances raise perplexing ethical questions for the healthcare team, and the care of such patients was the theme of this year’s International Conference on Clinical Ethics Consultation, in Washington, DC.
The conference was an ethicist’s dream but less so for a clinician, with case after case of conflicting values; tensions between patients, relatives, and medical teams; offensive, abusive, and racist patients; patients with borderline mental capacity; and uncertainties about “best interests.”
We heard of a patient with an invariably fatal genetic disease who, after previous failed suicide attempts, told the medical team that she would kill herself once discharged.1 She had seen relatives succumb to the disease. Her psychiatrist said that she was depressed but had capacity. She was discharged and died shortly after. Should she have been discharged in those circumstances?
We heard of healthy but desperate patients who had asked for limb lengthening procedures, now that the operation was safer than ever before. If a psychiatrist rules out any mental illness, should a surgeon agree to operate?
We heard the story of a 4 year old boy with an incurable brainstem tumour. He developed right sided weakness, gait disturbance, and speech problems. Then came wheezy breathing, headaches, swallowing problems, and decerebration cramps. He tried to talk but no one could understand him. He was sedated with midazolam, and the next week he underwent deep sedation with propofol. He remained unconscious until his death 10 days later. Was deep sedation ethically justified? How much information should doctors have given to this child before starting the deep sedation?
In each case the medical team called an ethicist to help them find an ethically acceptable solution or compromise. The ethicist talked to the stakeholders, identified their concerns, described the relevant ethical principles at play, and made recommendations to resolve the problem. Contrary to popular belief, clinical ethics is a practical discipline. It aims to be helpful, not obstructive.
Full time hospital ethicists
Cases such as these highlight the gulf in clinical ethics support between large hospitals in the United States and Canada, many of which have full time ethicists, and the United Kingdom, with its sporadic use of committees. The UK trails far behind North America in the provision of ethics support for clinicians, as I have drawn attention to over the past decade.23 In the cases I’ve mentioned here most UK clinicians would have no access to on-site ethics support. They might “muddle through,” hoping not to miss anything of ethical or legal significance.
Whatever the availability of ethics support at their institution, clinicians should be as attentive to ethically complicated patients as to medically complicated ones. These patients should be the subject of as much thought and discussion. They should be discussed at multidisciplinary team meetings, in grand rounds, and in case reports.
Albert Einstein reputedly said that in the middle of difficulty lies opportunity. The ethically complicated patient presents an opportunity to learn about whatever lies at the root of the complexity. Embracing these opportunities can improve the quality of patient care, lead to changes in practice and policy, and, if absorbed into the collective memory of the department, prevent the flaring up of ethical difficulties in the future.
Competing interests: None declared.
Provenance and peer review: Commissioned; not externally peer reviewed.
Patient consent not required (patient anonymised, dead, or hypothetical).