Patients’ experience of illness: lessons from classical guitarist, Liona Boyd

Gordon Giddings. Editorial Fellow, CMAJ.by Gordon Giddings, Editorial Fellow (2013-14), CMAJ

One of the benefits of attending conferences is in getting to share knowledge and in meeting colleagues—seeing how things are done in other places and settings. It is, however, less frequent that we have the benefit of direct patient experience at these conferences. It should not be underestimated how powerful that is.

I had the distinct pleasure of meeting Canadian classical guitar legend and multiple Juno Award winner Liona Boyd at the General Practitioner in Psychotherapy Association Annual Conference in Toronto on May 24. Liona was one of the keynote speakers and opened the morning session with a talk on focal dystonia. This was a very personal story for her as someone who had reached the heights of an internationally celebrated career, having played for England’s royal family and American presidents, and living a jet-set lifestyle in Beverly Hills. She began to notice several years back that she was having increasing difficulty in playing some of the more difficult passages on her guitar, specifically a technique called ‘tremolo’, a way to produce a sound likened to 2 or 3 guitars playing at the same time. Her fingers were not painful, but stiff, and wouldn’t seem to want to do the tasks that she had so effortlessly done over the years before.

She was subsequently diagnosed with focal dystonia, a diagnosis that she resisted for several years, as she was told that it was incurable. The implications of this for her were immense, as the guitar had defined her career, livelihood, aspects of her marriage, and in a very broad sense, her life as a whole. After struggling through several performances, she stepped down from the professional guitar stage at the level she had been performing. She moved to Miami, and after a period that she refers to as ‘la vida loca’, began looking at potential treatment options, for other ways to further her career, and ultimately to re-engage with her life.

To a large extent she has done that, by launching a singing career with multiple vocal recordings to her credit, moving back to Canada (yay!) and picking up the guitar again and giving concerts, albeit with a different technique and the assistance of a guitar partner who often accompanies her during live performances.

Liona stated during her 90-minute talk that this was the first talk (and PowerPoint presentation) that she had ever done. It was indeed a very admirable and inspirational presentation. However, her presence did bring something else—a reminder of the reasons why we travel to conferences and spend endless hours on continuing education, read numerous journal articles and immerse ourselves in rigorous research and scholarship.

The experience reminds me to immerse more fully with patients in their experience. Physicians often control what transpires during a patient visit. This may have the effect of rendering them more passive in their health care experience. It is important to remember to see patients as more than just their disease, but placing their experience in the context of their lives. Specifically looking at:

How is this illness affecting your life?

What do you think is causing it?

Why do you think that is happening?

What are you concerned that it might be?

What were you hoping we might be able to do for this?

Liona spoke of the difference for her in being seen by medical professionals who truly wanted to understand her illness experience and see how they could improve her condition. What proved most successful for her was a transdisciplinary approach that acknowledged the limitations and losses that she had experienced, but that also gave her a sense of hope and purpose. Though she still suffers from focal dystonia, she is optimistic about her diagnosis and her future. As well, myself and 100 other physicians who heard her speak that morning were enriched for it. Thank you Liona!

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