Should you get a mammogram at age 45?
Should you start taking a statin?
Is now the time to get a hip replacement?
You can go down rabbit holes trying to research these online, talk to friends about their experiences, or have a few too many opinions thrown at you in online communities.
And when clinicians partner 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 (Manda K, et al “Do ESRD patients really want to know prognosis?” NKF 2013; Abstract 146.). 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.”(Murray, Anne M. et al. Use of Hospice in the United States Dialysis Population. CJASN November 2006 vol. 1 no. 6 1248-1255)
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.