Biggar View – Summer 2014

Patient empowerment is the new black.

There’s a recent proliferation of papers, conferences, and seminars on patient empowerment. This topic is particularly visible in chronic illness where the need for self-management and participation is essential. A 2012 article in The Lancet suggested “In chronic-disease management…we cannot afford not to self-empower. Cardiovascular diseases, cancer, diabetes, obesity, and chronic respiratory diseases cause an estimated 77% of the disease burden in Europe as measured by disability-adjusted life years.”[i]

More and more, it’s recognised that enabling people to gain control of their health by involving them in decisions, encouraging them to solve problems and develop routines or treatment plans that suit their life makes health care more efficient and improves outcomes – as well as quality of life.

This is particularly true in cystic fibrosis. But I continue to hear real-time stories that suggest we still have a long way to go.

Michael* is an adult in his forties living with CF. Recently he was concerned to learn he had grown a new, and somewhat tricky, bacteria in his lungs. He is generally serious about his health and treatments. And he’s also reticent to criticise his health team. But this new bug worried him. So, prior to his next appointment, Michael did some internet-based research, looking at respected sites to get an idea of what might be best practice for treating this. At the appointment, he raised concerns about the approach suggested by his doctor, questioning if this was indeed the best way forward. His clinician’s response was to shut him down with disapproval and follow-up with a harshly worded appointment summary letter, denouncing Michael’s “questioning of appropriate medical advice”. Michael still has his worries. Now he doesn’t know who to believe, what action to follow, and has no one to talk to about his concerns.

Stephanie’s* daughter is a young adult with CF. She is attending university and holding down a part-time job while juggling treatments and the occasional inpatient stay. Although she has a good understanding of CF and manages much of her care independently, she still appreciates the involvement of her parents. For outpatient appointments, she prefers to have either her mum or dad attend with her. However, increasingly their presence has been resisted or even disallowed by the health professional team. Given that there is often a decline in health as young adults move into ‘independence’, does it make sense to lock out the people closest to them who know them and their health best?

These are examples of patient (and family) disempowerment that should have no place in modern health care. We can help this disappear by standing up, politely, against it. As a start…

  • By having confidence in our right to participate in health decisions. The Australian Charter of Healthcare Rights includes this: Participation – a right to be included in decisions and to make choices about your health care.
  • By believing we should be respected in our choices, whether that choice involves the presence of a support person or consideration of our concerns about treatment.
  • By reminding our health care team that our ability to manage our health at home (which we do most of the time) will be improved when we’re involved in developing treatment plans and making decisions.

One advocate for change believes that patient empowerment requires that “doctors should get down from their pedestals, but patients must get up from their knees.”[ii] That’s probably a good place for all of us to start.

*Names have been changed.

[i] The Lancet, Volume 379, Issue 9827, Page 1677, 5 May 2012

[ii] Robert Johnstone, in The Lancet (above)