Deborah Bowman is a Professor of Medical Ethics who has extensive experience working in healthcare and academia. She leads the General Medical Council’s (GMC) Task and Finish Group , which consists of independent experts advising the GMC on reviewing its consent guidance. The guidance is used to assist doctors to make decisions with patients about their care. Prof Bowman was diagnosed with cancer after being appointed in the role. She explores the concept of consent and how her illness has given her a unique insight to its importance as the GMC launches a consultation on a new edition of its guidance.
As a Professor of Medical Ethics and Law who has worked in healthcare and academia for 25 years, consent has long been an important and familiar concept. Whether I am teaching students at St George’s, University of London, or supporting clinicians, families and patients in NHS Trusts, consent is central to my work. I have written a lot about consent, including a book on the subject, and I have always been interested in how the theoretical principles that underpin effective consent are enacted in practice. So, when the GMC asked if I would lead the Task and Finish Group on reviewing its consent guidance, I was keen. The guidance dated from 2008 and the invitation was an opportunity to work with a wide-ranging group of people on a subject that was integral to my professional role. What I did not know when I became Chair of the group was that I would, during the review, become seriously ill. It has been a rich and changing experience in many ways, not least in how I perceive and value consent.
Consent before illness
Had you asked me before I was diagnosed with cancer, I would have told you that I had a sound appreciation of the importance of consent, both for doctors and patients. In some respects that would have been true. I have, over the years, been involved in many cases and conversations about the significance of consent. I recall patients who discomforted clinicians by appearing to make choices that were difficult to understand. I remember colleagues who have grappled with determining how much information to share about proposed treatment and how to adapt that information to individual patients. I will never forget the surgeon who sought advice on how to convey risk to a patient who specialised in game theory, or the junior doctor who wanted to ensure that a dance teacher understood that a drug’s side effect – peripheral neuropathy – could compromise her ability to teach the classes that were her living.
Yet, in many ways, the last year of treatment, which has included chemotherapy, surgery, radiotherapy, endocrine and experimental therapies, has revealed the limits of my professional knowledge of consent. It has also reinforced how important GMC guidance can be. Consent that is well-sought and predicated on a values-based approach which is committed to partnership and dialogue is, quite simply, transformative. It has therapeutic power and an impact on care that, I have learned, cannot be overstated. Consent, at its most potent, is much more than a one-off consultation, a piece of paper or even a bureaucratic hurdle. It is the manifestation of ethical care in which people – doctors and patients alike – are recognised as individuals with their own priorities, anxieties and perspectives. It is the process by which professional and patient comes together to share, learn and collaborate in decision-making.
To some extent, the existing GMC guidance on consent has changed little. The guidance remains grounded in and reflective of the law, particularly the case of Montgomery v Lanarkshire, which was discussed by Mary Agnew, Assistant Director of Standards at the GMC, in a blog. Although the judgment of the Supreme Court in Montgomery is important in privileging the patient’s preference for information rather than the clinician’s discretion about what to disclose, the existing GMC guidance on consent already emphasises that sharing information according to a patient’s wishes is good practice.[i]
What then has changed?
It is primarily in emphasising that consent is a continuing process in which doctors and patients work together to make choices that reflect context. That context may be the patient’s preferences, the specialty or location within which a consultation takes place, the doctor’s experience and skill or considerations such as language. Consent and the ways in which people approach it will, inevitably, vary, but the constant remains the commitment on the part of professional and patient to collaborate. Choices, wherever they are made and in whatever clinical specialty, are based on sharing, openness, attentiveness and responsiveness. There will be constraints and challenges, but a disposition that recognises the primacy of partnership and the power of effective consent should be commonplace. Seeking and giving consent is part of supporting ethical decision-making. The enactment of choice, via valid consent, is vital ethically and legally, but it is much more than a signature on a form or meeting a practitioner for a one-off pre-surgery appointment or consultation prior to treatment.
The notion of consent as part of ethical decision-making and an ongoing process to which many people contribute has resonated with me during the last year. Consent for treatment, such as chemotherapy and major surgery, has been sought in exemplary ways. Yet, I have been surprised by the extent to which a standard NHS consent form can evoke fear and an overwhelming sense of paralysis in a woman who has worked all her professional life in healthcare settings. The contradictions, complexities and uncertainties that I experienced as a patient undoubtedly made consent more difficult and daunting than I had anticipated. I was fortunate to be cared for by outstanding clinicians who, with great sensitivity and skill, paced and adapted the information they shared with me. They recognised that I was both rational and emotional, inquiring and denying, a patient with a diagnosis and an individual with quirks and unique characteristics. The relationships and the ethical disposition of those who cared for me were vital. I was seen and heard. And that, in turn, made it possible for me to see and hear.
How to have your say on consent
The Task and Finish group now wants to see and hear from you – wherever you work or receive care. We are seeking the views and responses of professionals and patients and, of course, those of us who fall into both categories. We want to know about your experiences and priorities in seeking or providing consent. Are they reflected in the draft guidance? What might we have missed? What does it mean to conceptualise consent as a process in a health service where pressure is often a uniting feature? You can respond to the consultation online. You can also attend one of the range of events that we will be holding across the United Kingdom to meet people and hear, in person, your thoughts, suggestions and ideas in response to the draft guidance.
Be seen. Be heard. Be part of the consent conversation.
[i] See paragraphs 7-9 of Consent: patients and doctors making decisions together (General Medical Council, 2008)