When doctors and patients disagree

• Download figure
• Open in new tab
• Download powerpoint

Although we don’t know the nature of the communication between doctors and the family in the Ashya King case,1 the ensuing media coverage has thrown a light on the much wider issue of how communications are conducted between the medical profession and patients and their families.

Decisions about treatment and best management should be shared and take account of the concerns and perspectives of patients and their carers.2 It’s not easy. Doctors daily debate what constitutes best practice and how to apply it to the patient in front of them.3 They also struggle to find the time, or lack the skill or motivation, to listen to patients, elicit essential information from them, and fully understand what matters to them.

Patients and their families are often frustrated by this. Most “get” that there are constraints under which doctors and public health systems work. But when the stakes are high, patients will, and surely have the right to, explore every possible option; and they have an expectation that their doctors will listen and discuss their views sensitively.

Ashya King’s father scoured the internet for information about best treatment. It’s a scenario that health professionals have got to get used to. Information is being democratised, and suggesting that patients should not access it is absurd.4 The new reality for doctors, as the jargon puts it, is to “act as guide not God” and not brand patients who do their own research as difficult.

Doctors will inevitably be placed in situations where they don’t necessarily know best. In a video clip from a recent meeting in Sweden, one of the members of The BMJ’s patient panel uses his experience of learning about lifesaving treatment for advanced cancer from the patient community to argue that not investigating your condition online may be bad for your health (http://bit.ly/WGgUGd).

Patients’ capacity to “crowdsource” answers to their health problems signals a sea change in the healthcare environment. The relationship between patients, families, and health professionals is changing fundamentally.5 Policy makers have heeded this and are promoting a move to partnership. But it is poorly realised on the shop floor, where decisions remain largely doctor led.

When a close relative of mine with dementia was moved to a new care home a few months before he died, the GP took him off all his drugs, which included an antidepressant. My relative had a psychotic episode, was sedated, and was promptly put back on medication. But a decision was made to section him. I suggested to the psychiatrist that time would swiftly resolve things and that “sectioning” him was not necessary, nor in his best interests. But it was to no avail. So I drove this frail, bewildered man to the designated locked secure mental unit, spun him a yarn as to why I was taking him there, and left in tears. A day later he rang me and begged me “on bended knees” to get him out. He was deeply distressed by his fellow patients, who were “so ill and disturbed.” Searing memories of his experience (it took three weeks to be discharged) remain.

Another patient I am close to failed to achieve remission from his rheumatoid arthritis after seven months of taking first line drugs. I “researched” access to biologicals and discovered that prescribing rates varied markedly between trusts and that the eligibility criteria of the National Institute for Health and Care Excellence included a highly subjective measure: pain on squeezing joints. Doctors I talked to said that if, in their judgment, a patient needed biologicals but did not meet the NICE criteria (which are stricter than in many other countries) they advised patients to quit being stoical and say “Ow!” when affected joints were pressed. This enabled them to inflate the composite disease activity score to meet the NICE threshold.

Armed with this insight I asked the patient’s doctor to reconsider his decision not to prescribe a biological. The answer was no, and dialogue was not invited. Moving trust was not easy, but once this was done the need for biological treatment was agreed and sanctioned.

Patients know about variation in practice, which, thanks to the lead of Jack Wennberg, is no longer a closed book.6 They discuss it along with every other aspect of their condition and its treatment with fellow patients and in online communities. Doctors who have grasped patients’ ability to access and share information are collaborating with them to improve the quality and cost effectiveness of care.7

But collaborative care is possible only if respect is mutual and communication good between the medical team and patients and those who care for them. The quality of their relationship with medical staff, not least the doctor, is of overwhelming importance to them.

Although the details of the Ashya King case remain private, it has raised many questions. Among them: what value professional credentials if patients’ and families’ views are not given credence, dialogue maintained, and a way forward jointly agreed? New times demand new approaches.