The Care They Need and No Less, Want and No More

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Nov 11, 2012
by Louise Hallman
The Care They Need and No Less, Want and No More

The role of patients and transparency in shared decision making

Panellist Al Mulley and Roberto Iunes being interviewed by SGS program director Lotherington

Individuals often delegate decision making power to others – we trust mechanics to fix cars without needing all info, so why don’t we expect the same of our doctors?

World Bank Institute senior health economist Roberto Iunes’s comment might have raised a wry laugh in Parker Hall with the participants of the session ‘Realizing the Right to Health’ at Salzburg Global Seminar, but it also raises a fair question for those not already familiar with the concept of shared decision making. After all, doctors are experts in medicine, no?

"Shared decision making is not just informed consent," clarified fellow panelist Al Mulley, director of the Dartmouth Center for Health Care Delivery Science. Rather, shared decision making recognizes the patient’s own expertise – how they feel about their own treatment and condition. Just because a particular treatment, medicine or surgery works for one person does not mean that it will be the best course for all patients. Shared decision making also recognizes the patient’s possible alternative health futures.

"You have to recognize that different patients have different risk attitudes," said Mulley. What works for one patient, won’t necessarily be what another wants owing to their own circumstances. This is particularly stark when dealing with critical patients; one may choose to exhaust all medical options, taking drugs with dire side effects in the hope they will prolong life. Others may simply choose to spend the time they have left with their families rather than a hospital.

"A doctor’s job is only half done with the diagnosis," added Mulley. As he explained, the huge range of treatments available means that the doctor’s job is further complicated, in some cases essentially asking their patient ‘which side effect would you like to deal with?’ and ‘what trade-offs are you willing to make?’

But whilst many are starting to agree that shared decision making – giving the patient "the care they need and no less, the care they want and no more" – is important, doctors and patients must both recognize that a patient’s capacity to make an informed decision might been impaired, regardless of the amount of information available to them. Put simply, patients are by definition not in their best health.

Shared decision making needs more than just a strong ethical relationship between a doctor and patient, it also requires a social contract between the government and the patient, added Iunes.

Shared decision making brings transparency between the doctor and the patient, and the patient also needs transparency from government. In order to make a well informed decision, patients need reliable and accurate information. But simply providing the information and claiming transparency it is no panacea; the information must be easily understood and not misrepresented – which can often not be the case in the media.

Highlighting the MMR-autism case in the UK (which saw the publication of a since-disproved study relating the MMR vaccination with a higher rate of autism and led to many parents choosing to boycott the vaccination), panellist interviewer SGS program director John Lotherington exclaimed: "You can’t just dispense transparency – you must consider reception of the information!"

Doctors and governments have the responsibility to ensure patients are well informed.

"It’s not just about doing things right, it’s about doing the right things," concluded Mulley, and ultimately trusting that the patient knows what’s right for them.