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Slow Medicine

Monday, May 06, 2019
Geri Lynn Baumblatt When partnering with people as they make health decisions, it’s easy forget what it’s like not to know. Yet, even when people have lived with a condition for years, there can be meaningful gaps in their knowledge and understanding.

One study that resonates with my own experience found that 92% of patients with ESRD thought their health would remain stable or improve over the next 6 months.¹ I found the same when talking to people with stage 3 kidney disease; most of them were sure diet was enough to protect their kidneys and they didn’t realize they were coming up on difficult decisions about dialysis and transplant even if they’d been good about their diet.

This presumed understanding has a big impact on care decisions and future planning. After all, if you don’t think you have a life-limiting illness, you’re probably less likely to prioritize advance care planning. With kidney disease, this unfortunately plays out as “a minority of dialysis patients use hospice.”²

Other patients and families I’ve talked or worked with:

Thought heart failure was an acute condition they’d get over and recover from
That if they didn’t currently experience symptoms from Crohn’s disease that meant their condition wasn’t progressing or causing any damage to their colon
Thought imaging findings of herniated discs meant that disc issues were definitely the cause of their back pain

For people to make truly informed decisions, before discussing treatment options, make sure patients and families have a solid understanding of their condition and prognosis. Even if it’s a review, there can be essential information people heard years ago and forgot — or it wasn’t presented clearly — or they were stressed during that encounter.

If there is meaningful new information, it may pack an emotional punch. Slowing things down so people have time to process their emotions as well as the understanding can be hard. After all, decisions are hard, and it can feel easier and less painful to just put a plan in place. And clinicians have emotions, too — so the impulse is often to jump in and alleviate the stress of working through to a truly person-centered decision.

So, before walking through treatment options or pathways, ask people and their care partner to describe their condition and what it means for them over the near and long term.

This can also help us all get a better understanding of common gaps and misconceptions so we can anticipate them and normalize them for people earlier and not just at the point of decisions.

If you uncover a meaningful gap in knowledge or misconception, slow things down. People may be anxious and make a quick decision, or they feel overwhelmed and defer. Giving them time to process the information and emotions still puts them in a better place to make a thoughtful decision.

¹Manda K, et al “Do ESRD patients really want to know prognosis?” NKF 2013; Abstract 146.
²Murray, Anne M. et al. Use of Hospice in the United States Dialysis Population. CJASN November 2006 vol. 1 no. 6 1248-1255

Geri Lynn Baumblatt MA, For the last 20 years, Geri has worked to help people understand health conditions and procedures, orient them to their diagnoses, make more informed decisions about their care, and partner with their care teams. She oversaw the creation of the Emmi program library, and she regularly speaks and serves on patient engagement, patient experience, health literacy, shared decision making, health design, family caregiving, and heath communication panels for organizations like AHRQ, the Brookings Institute, Stanford Medicine X, and the Center for Plain Language. She serves on the editorial board for the Journal of Patient Experience, is on the board of the Society for Participatory Medicine, and published a chapter in Transformative Healthcare Practice through Patient Engagement (IGI Global). She currently consults on patient engagement, family caregiving, and health communication. Follow her on Twitter @GeriLynn

Tags: patient engagement, communication, engagement, listening, patient

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