What do patients really want?

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We are, more than ever before, a society which goes to great lengths to take care of our bodies. We’re reading more food labels, taking time for the gym, doing yoga and meditation to “connect” with our inner selves…yet when it comes to our own medical treatment decisions, we are surprisingly out of touch.

The body blind spot

When we are diagnosed with a medical condition, even a minor one, we are often so concerned with getting better that we develop a treatment blind spot, failing to consider the following:

  • Is the proposed treatment my only option? Why has it been proposed?
  • What are the advantages and disadvantages of all my treatment options?
  • How will the side effects of this treatment affect my quality of life?
  • What implications does my treatment have, beyond recovery?
  • What is the evidence that my treatment has been effective in similar conditions to mine?
  • If I chose to do nothing at all, how would my condition progress?

The “silent” misdiagnosis

It can feel daunting or even impolite to ask our doctor why he or she is prescribing a particular treatment, or if we have any other options. We might feel that questioning our treatment or expressing a preference isn’t within our rights. Yet it is exactly this failure to transmit our preferences to our doctors that has resulted in “the silent misdiagnosis”, a term coined in a 2012 article in published by the King’s Fund in the UK and the Dartmouth Center for Healthcare Delivery Science in the US. The article, “Patient preferences matter”, made headlines in its call for doctors and healthcare systems to actively engage patients in their treatment decision-making process, listening to what patients want and ensuring that both doctors and patients are fully informed of treatment choices and implications.

For example, the article cites a study in which doctors believed that for 71% of breast cancer patients, keeping their breast is a top priority, when in reality only 7% felt this was the most important thing. This kind of assumption-gap, built on a failure to communicate our needs, continues to be an issue today.

Shared decision-making

Simply stating our preferences or having our doctor ask about them is not enough. We may be lacking all of the available information and research, we may not have considered the implications of a treatment, or we may be letting our emotions guide us. According to the King’s Fund article, “when a patient clearly expresses a treatment preference, it is a strong indicator of the right preference diagnosis, but it is not necessarily conclusive. Only very rarely is a patient fully informed.”

That’s where shared decision-making comes in. The Australian Commission on Safety and Quality in Health Care is currently developing such a programme, which “involves the integration of a patient’s values, goals and concerns with the best available evidence about benefits, risks and uncertainties of treatment, in order to achieve appropriate health care decisions.

In other words, a meaningful open dialogue between patients and doctors, in which patients can voice their fears, doubts and hopes, and to which doctors can respond and add insight, arriving at the right recommendations for each individual.

Easing the burden

The King’s fund article cites research demonstrating that for long-term conditions, an accurate diagnosis of patient preferences generally results in better patient management of their condition, fewer hospitalisations and fewer emergency department visits, going on to state that “health care may be the only industry in which giving customers what they really want would save money. Well-informed patients consume less medicine- and not just a little bit less, but much less.”

Beyond the potential cost savings in unnecessary testing, procedures and medications, sparing our ourselves and our loved ones the physical, psychological, emotional costs of proceeding with treatments that aren’t right for us provides a huge incentive for patients, doctors and healthcare decision makers to embrace shared decision-making and pursue accuracy in patient preferences.

Best Doctors supports both patients and doctors in making these goals a reality.

 

Sources:

Mulley A, Trimble C, Elwyn G (2012) Patients’ preferences matter. Stop the silent misdiagnosis. The King’s Fund and the Dartmouth Centere for Healthcare Delivery Science. Available from: www.kingsfund.org.uk/publications

Australian Commission on Safety and Quality in Health Care (2015) Shared Decision Making. Retrieved from: http://www.safetyandquality.gov.au

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