Halfway through the 2010s, I think it’s safe to say that we’re all comfortable with the disappearance – largely – of the paternalistic model of healthcare that has reigned for such a very long time.
There remain pockets of this medical paternalism, for example in clinical research ethics, in which the view seems to remain to some extent that patients are unable to make decisions regarding complex medical research studies.
In certain areas – whether based on culture, community, medical specialty, or other factors – some patient preference remains for that old-fashioned paternalism on the part of their physicians. As well as from the other members of their healthcare team.
There are patients who truly don’t want to be involved in their care, who don’t want to be asked to make decisions, or to take any action towards treatment decisions. I’m not providing a reference here, but rather an anecdote; anecdata rather than actual scientific data.
This is because my mother was one such patient. She wanted her multiple physicians to just tell her what to do – arguably so that she could ignore their recommendations! (That would be a blog post topic in and of itself.) And in any case, this post concerns those patients who are willing to be involved in treatment decisions.
Despite these pockets of paternalism in healthcare, we’ve seen a progressive move – over the past two decades or so – to a more patient-centric approach. Towards a real attempt to provide at least basic explanations of potential treatment options and decisions, so that the patient can be involved in – and more independently make – their own informed care and treatment decisions.
Towards engaging patients in their healthcare overall, and in decisions regarding treatment options. So I was curious to read the results of systematic review published earlier this year, on whether shared decision making (SDM) actually had any significant impact on patient outcomes.
This review included 39 unique studies, reported in 41 publications; 34 of these had been published within 10 years of the review, and the oldest had been published in 1989 so would have used data more than 5 years older.(1)
The US authors’ succinct conclusion, despite the habitual ‘more research is required’ caveat, was that there were positive benefits to SDM:
when patients report that they have participated in shared decision making, they are likely to enjoy better affective-cognitive outcomes, such as improved satisfaction and less decisional conflict.”(1)
Of course, with only 39 studies being evaluated, it’s evident that only a few conditions or diseases were included. The areas of SDM considered in this review were:(1)
- 14 oncology/cancer care
- 10 of which were breast cancer surgery/treatment decisions
- 6 other areas
- 5 diabetes
- 5 mental health
- 3 serious injury/trauma
- 2 cardiovascular disease
- 2 HIV/AIDS
- 2 primary care (general)
Despite the limited range of conditions and therapeutic areas covered, I was ready to take this as a sign that we’re moving in the right direction in terms of patient-centric care.
Then I read an article that has just been published, out of Université de Montréal, on a Patients as Partners(2) concept. And realized that we may still have so much farther to go down this path.
The Patients as Partners study took the concept of patient-centricity or engagement a step higher, in which each “patient is considered a full-fledged partner of the health care delivery team and the patient’s experiential knowledge is recognized“(2; emphasis added).
This particular study targeted patients will chronic disease, and set out to discover how patients view their engagement with various healthcare professionals regarding their own care.
Unfortunately the sample size was a mere 16 patients, and the study was purely interview-based (recall) and limited to only the patients’ perspectives. Also – in my view – skewing the results was the fact that each study participant had to have taken at least one of the inter-professional collaboration courses offered by the University – within the prior year – and to also have followed a course on the concepts of partnership of care.
This is obviously a very one-sided approach, which led to very one-sided responses which I won’t discuss here – the link is below if you’d like to read the article. The reason I’m writing about this particular study is because of 2 comments made in the article:
“Patients describe themselves as proactively engaging in three types of practice, regardless of health professionals’ openness to their role as partners”
“Patients appear to play a more active and less docile role in their own direct care than suggested so far in the literature, regardless of the degree of reciprocity of the partnership or the degree to which the health professional seeks to encourage patient engagement”
These 2 comments seem to indicate a perceived lack of engagement, but on the part of healthcare professionals rather than of patients. If this is true, we have much more work to do in viewing healthcare as being patient-centric, patient-engaged, or with patients as partners.
References:
(1) Shay LA, Lafata JE. Where is the evidence? A systematic review
of shared decision making and patient outcomes. Medical decision making : an international journal of the
Society for Medical Decision Making.
2015;35(1):114-131. Web:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4270851/
(2) Pomey M-P, Ghadiri DP, Karazivan P, Fernandez
N, Clavel N (2015). Patients as Partners: A Qualitative Study of Patients’
Engagement in Their Health Care. PLoS ONE 10(4): e0122499. Web:
http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0122499