Being “under the care,” a phrase surely ripe for euthanasia, of cancer specialists is a salutary experience. You learn a lot about the gulf between those who live with disease and those who treat it.
As a three operation 12 year survivor of adrenal cancer the news that my cancer had recurred came as a shock but not a surprise. The endocrinologist was sympathetic. He suggested we ask the surgeon who operated on me ten years ago whether the recurrent tumour was operable.
After a two month wait I got an appointment and the surgeon summoned me in. He told me he “could not remember” if he had seen my scan but that there were various treatment modalities on offer if surgery was not possible. I was totally taken aback. I asked if he would write and give me his views on treatment options; once he had seen my scan.
A letter never came. The one I got six weeks later was from a junior doctor in another department. It informed me that my case had been discussed at a multidisciplinary team meeting and I was for adjuvant chemotherapy. If it shrank the tumour surgery could be reconsidered.
I felt angry. I had hoped for a personal letter from the surgeon. The toxic, and in most cases ineffective, four agent drug regime recommended was one I had already decided I was not prepared to take. And the idea that best management could be decided by a team of health professionals who had never met me and knew nothing about my preferences and priorities was absurd.
Sadly it’s not an uncommon scenario. Indeed it’s the status quo. Most treatment decisions in cancer care are made by multidisciplinary teams. Busy departments may discuss over 40 cases in a morning. Scan findings are displayed, test results discussed, views on management exchanged, and decisions made rapidly. The voices of those who are pro intervention, a colleague wryly admitted to me, tend to dominate the more cautious, and patients’ perspectives are seldom aired.
A recent viewpoint in the BMJ underlines this and suggests that decision making in this context encourages “too much medicine.” Recommendations for aggressive therapy are made, which “cause patients misery” and has “little positive effect.” http://www.bmj.com/content/351/bmj.h4630.
When I met a different consultant who relayed the team’s decision he was surprised that I challenged it. He suggested I lacked sufficient will to live. Fortunately, a consultant I trust and who knows me well suggested a second opinion. To my relief the oncologists at the second hospital agreed with my view about drug treatment and suggested radiotherapy as the preferable treatment option.
Most cancer treatments have side effects and I had my share. It was therefore apposite that I was invited to participate in a meeting dedicated to discussing the long term side effects of cancer treatments. The consultant who convened the meeting told me that his colleagues were very against him holding it. He said that they disapproved of openly discussing the long term complications of cancer therapy. “They say it gives the specialty of oncology a bad name,” he said.
A failure to be fully open with patients about the risks of interventions and short and long term burden of treatments makes no sense. Patients, perforce, have to live in the real world and shoulder its consequences. They now increasingly discuss all aspects of their disease and its treatment in online chat rooms and exchange valuable information on how to cope. Their conversations are illuminating but most clinicians are only dimly aware of them and what they have to tell us about patients’ concerns, wants and needs. .(http://blogs.bmj.com/bmj/2016/02/22/cordelia-galgut-why-are-the-long-term-effects-of-cancer-so-rarely-talked-about/)
Patient communities offer more than mutual support though. They know about and can inform the research agenda and the design and delivery of services; and promote empowerment. I have lost count of the number of doctors who have said “I am not sure what to advise for you for I have never seen a patient with your cancer before.” Ten years ago this response phased me. Now I can tell them that the Facebook community for my rare cancer has over 1200 members and through my own crowdsourcing I have learnt a lot. It’s given me the opportunity to act as an informed partner in decision making and I am very grateful to the clinicians who have been supportive of me taking on this role.
More openness and exchange between health professionals and patients is in everyone’s best interest. Patients can act as resources, not merely a drain on them. But to capitalise on this we need better conversations between patients and health professionals.
Declaration of competing interest. Tessa Richards is a senior editor at the BMJs and responsible for its patient partnership strategy http://www.bmj.com/campaign/patient-partnership
Dr Tessa Richards is a senior editor at the BMJ and set up and leads the BMJs patient partnership strategy. She trained at Guys Hospital in London and worked full time in the NHS as a general physician and rheumatologist and subsequently a general practitioner before joining the BMJ editorial staff. In 2001 she took over the BMJ Analysis section and established its Overdiagnosis series which is part of the BMJs campaign on Too Much Medicine. She is a member of the Royal College of Physicians and the Royal College of General Practitioners , a BMJ columnist and blogs regularly on patient perspectives. Past experience at the BMJ includes leading the journals general practice, medical education and clinical reviews sections. She has also written series on medical education, medicine in India, Health Maintainence Organisations and EU affairs. Theme issues she has co ordinated include Partnering with Patients, and Health in the Middle East. Interests include international health and European health policy. Her current professional interest in patient partnership has been advanced by undergoing treatment for stage 1V adrenal cancer, hyperparathyrdoidism, and pernicious anaemia, and as a carer for close family members with rheumatoid arthritis, dementia, and blindness.