At some time, we are all patients, and will want to know about the potential benefits and harms of our health care. In serious and life-threatening trauma, few of us will want to, or be in position to do this, and many decisions are made by the most experienced healthcare professional quickly and appropriately. However, in situations where there is uncertainty about the benefits or harms of certain treatments, decision making is very different. Some people have high levels of trust in their health practitioners and follow their recommendations without question. Others recognise that there are times when the evidence is conflicted. This often occurs in chronic conditions such as asthma, diabetes, arthritis, where there are similar treatments that have different risk-benefit profiles. In these cases, our values and lifestyles will influence treatment preferences.
The UK government used the “no decision about me without me” slogan to respond to consultation about the White paper; “Equity and excellence: Liberating the NHS”. More specifically, concepts of shared decision making were recommended as a way to include patients in their own decision making. However, there seems to be a gap between this idealist rhetoric and reality. I attended a Management in Medicine seminar last week which began with a clarification that:
Shared decision making means that decisions about care are made by the clinician and patient together, based on the best available evidence and taking into consideration the patient’s needs, preferences and values. Embedding shared decision making into routine practice requires clinical leadership and a supportive organisational culture.
However, we quickly learned about the inherent challenges. To make informed decisions, patients need information. Yet, patients often do not remember key facts about their medication or treatment. Further, the most important concerns for healthcare professionals are not the same as patients’ most important concerns. Professor Michael Barry summarised that diagnosing disease is not the same as diagnosing what people want. He argued for ways to reduce the avoidable ignorance of patients, and highlighted the evidence that patient decision aids can increase patients’ knowledge and engagement in decision making.
Professor Martin Haerter reported on the emphasis in German medical schools in training doctors in communication skills required for implementing shared decision making. Even with a cultural attitude change, he described how it can be difficult for doctors to both understand and share with patients, information about treatment risks. Finally, Professor Trudy van der Weijden described some practical solutions, in the form of using individual patient care plans, which incorporate setting goals and include appropriate self-management options. She addressed problems of understanding clinical guidelines for both patients and doctors, and suggested a simple shared summary.
During the discussion, I reflected on the challenges in our current health system. For the average 7 minute GP consultation, where they are being paid to reach certain treatment outcomes, there is often little time to truly share information and decision making. Further, when clinical guidelines become standards of care, there is limited scope for individual variation based on individual preferences. Finally, even with the plethora of healthcare information available on the internet, it is difficult to devise a trip advisor type system to evaluate the quality of both information and healthcare provision. It is genuinely difficult to compare making a decision about whether to have a knee replacement with that of buying a washing machine!