Domhnall MacAuley on shared decision making

Domhnall Macauley

Democracy means involvement in decision making but it may not always lead to the best outcomes. With this simple analogy, Gerd Gigerenzer (Berlin), captured the potential hazards of clinical shared decision making in his keynote address to the 5th International Shared Decision Making Conference in Boston (June 14-17).

The concept of sharing decisions on treatment and screening with patients feels entirely appropriate but the implied benefit may be deceptive; measuring success depends on how we define desirable outcomes. Glyn Elwyn (Cardiff) emphasised that there was an ethical imperative for shared decision making in the context of patient autonomy. It undoubtedly improves patient involvement and improves satisfaction. But how do we measure the health benefit? Richard Thomson, an epidemiologist (Newcastle UK), raised difficult questions that may not have entirely pleased the audience.

He reflected on work on atrial fibrillation that was successful in involving patients and altered the decision making process. As a result, fewer patients opted for warfarin treatment. But, as he pointed out, this may lead to an increase in subsequent stroke rate. Patient informed choice, in this example, runs counter to evidence based guidance and creates a dissonance between personal and population health gain. He also used this example to ask if we need more generic measures of health, bearing in mind the well rehearsed WHO definition.  Using this definition of health, shared decision making may lead to healthier patients but more illness.

It may also be difficult to win doctors over to this challenging paradigm and Wemke Veldhuijzen (Masstricht) showed that, given a choice, GPs will tend to select a strategy that meets the perceived preference and needs of the patient rather than share the decision making. It takes more time in the consultation, and if GPs do chose to work in this way, we need to appreciate that there will be a trade off with other activities.

More sophisticated decision support systems should help, but Gerd Gigerenzer showed evidence that sometimes doctors make better decisions with less information;  a more sophisticated prognostic model may have an optimal fit but less predictive value. He even ventured to suggest that heuristic strategies may be better than optimisation. Loosely translated this means following your gut feeling.

On the day following Barack Obama’s address to the American Medical Association in Chicago, it was fascinating to hear Susan Dentzer , editor in chief of Health Affairs, speak about the proposed changes in American health care. Equity is an important concept in the UK but there is considerable resistance in the US to socialised medicine. It was no surprise therefore to hear that Obama was both applauded and jeered at the AMA. Many doctors feel that health care reform is long overdue but others believe there should be no restriction on individual choice on treatment.

There is considerable resistance to comparative effectiveness research and a feeling that US doctors would resist a NICE type structure that implies rationing, non personal care and a threat to doctor autonomy. The Obama administration is keen to introduce major change and, in particular, a government-sponsored insurance scheme alongside private insurance to help protect the almost 50 million uninsured Americans. The details have not yet been decided but you can follow the developments on Winning over the doctors is just one battle in a country founded on the principles of individual choice. Many argue that they should not have to pay for someone else’s health care.

Shared decision making is not for everyone. Susan Dentzer brought a smile to the audience when she recalled Obama’s description of his relationship with his own physician: “ and I include myself, Michelle, and our kids in this — we just do what you tell us to do.” I smiled too but, was reminded of my flight to Boston, when the pilot of my plane announced a long delay in take off because there was a storm on the flight path. I was happy not to share in that decision either.

Domhnall MacAuley is primary care editor, BMJ

  • Patients of the World, Unite!

    During a conference Q & A session, an audience member inquired where is the patient movement, claiming shared decision making?
    It is perhaps not surprising that patients often fail to demand to be involved. They are either too overwhelmed, concerned they might offend ther doctor, unaware the option exists, or, sadly, too sick. And sometimes, they just don’t get what the health professionals are talking about. See

    It if for us the health professionals and decision scientists, rather, to further the work that those who preceded us have thus far so nobly advanced. Even if this good fight is not yet fought by the people, we can do our best to fight it for them.

  • Dan Matlock

    It is unclear what Dr. MacAuley is proposing. It seems as if, in the name of public health, he is advocating a system where patient and family preferences are not considered in medical decision making. Here in the United States, our legal system has clearly rejected this as evidenced by the court cases of Karen Ann Quinlan, Nancy Cruzan, and more recently Terri Shiavo.

  • Domhnall MacAuley

    Dan and Talya, thank you for responding. I am pleased that it is unclear- I tried not to favour any particular viewpoint as I wanted to reflect accurately the different strands of opinion at the conference. There are many different opinions and I know this is a debate that the US health care system will have to address in the near future with the proposed Obama health reform. The concept of socialised medicine is very controverial in the US while many European countries favour some collective responsibility. If, as Talya proposes, patient movements take ownership it will be interesting to see if they opt for the benefits to the individual or to society.

  • Amy Neil

    Perhaps one of the difficulties with the concept of shared decision making (SDM), is that it doesn’t fit neatly into a ‘framework’. There is no ‘task flowchart’ for SDM that will optimally suit all individuals (patients AND clinicians) in all scenarios. I was a patient with a chronic illness within the NHS for 10 years, before returning to my native US. In my experience, niether system is ideally suited to SDM. In fact, I don’t think the SDM issue should be linked to payment, structure, or to any other organizational discussion. Rather, we should consider focusing on the underlying philosophy of SDM within the wider context of medical care — that all patients (and clinicians) are individuals and we can never presume to know or to fully understand their experience. However, we can learn how to hear their experience, which will then guide us in presenting and delivering care options. Ideally, clinicians should be able to do this without fear of legal repercussion. While I acknowledge that ‘money’ issues impede ideals, socialised medicine, in my experience, was not immune from this phenomenon. However, the UK now seems to be at the leading edge in promoting increased focus on the patient experience of care, via organizations such as the Picker Institute. It is this return to underlying fundamentals, I think, that will enable us to effectively address current healthcare quality reform issues, including SDM.