What does a good day look like to you?
Not a perfect day. Just a good one — the kind that makes you feel like yourself. Coffee with a friend. A walk. Watching your kids or grandkids play in the backyard. Whatever it is, your doctor probably doesn’t know. And that gap — between what makes your life worth living and what your care team actually knows about you — can matter quite a bit.
Why the Gap Persists
In a 2018 randomized clinical trial published in JAMA Internal Medicine, researchers at the University of Washington enrolled 537 patients with serious illness across multiple outpatient clinics. Half received what the researchers called “usual care.” The other half received a simple intervention: before their appointment, both the patient and the clinician were given a brief, personalized prompt designed to get them ready for a goals-of-care conversation.
The results were striking. Among patients who received the usual care, only about 31% reported having a meaningful goals-of-care discussion with their clinician during that visit. Among those who had been primed for the conversation — just a simple set of prompts and preparation — that number jumped to 74%. Patients in the intervention group also reported that the discussions they did have were of meaningfully higher quality.
The lesson the researchers drew was not that doctors need better training (though they might) or that patients need to be more assertive (though that can help). It was simpler and more hopeful: what people need most is a way to prepare. When patients arrive having thought through what they want to say, and when clinicians arrive knowing what to ask, something opens up that routine medicine keeps closed.
Preparing to Close the Gap
Clearly, it is important to define the values and intentions that you have for your health care (your goals of care), now and in the future. Your care team can help you understand the breadth of options available to you and their implications. Your loved ones can support and ground your decision-making and remind you of your values. To prepare for such a conversation, consider reflecting on the following questions.
- How would you describe what’s happening with your health right now? What do you understand? Where are you confused? What feels uncertain? Your care team can only fill in the gaps they know about.
- What are you most afraid of? Pain is often at the top of the list. So are being a burden, losing independence, or ending up somewhere you don’t want to be. These fears are worth naming out loud, because your care team can often do something about them — but only if they know.
- What are your most important goals? If your health gets harder to manage, what do you most want to be able to do? Is there a milestone for yourself or a loved one that you are hoping to enjoy? What would make the effort feel worth it? There’s no wrong answer here besides the one that isn’t yours.
- How much do you want to know? Some people want every detail about what might lie ahead. Others might be stressed by this information, and prefer to know the broad strokes while focusing on the present. Either is valid, as long as you tell your care team.
- Who would speak for you if you couldn’t speak for yourself? This is one of the most important things you can sort out before a crisis, not during one. Pick someone, and then actually tell them what you would want.
You don’t need perfect, polished answers to each of these. That’s what the conversation is for. However, this preparation will set you up for an effective conversation at your next appointment.
Resource to Move Forward
Visit the websites below for more tools to have conversations about goals of care.
- What Matters to Me: A Workbook for People with Serious Illness
- Home Hospice Finder
- What are Palliative and Hospice Care?
- The Conversation Project: Advance Care Planning
- National Institute on Aging: Advance care planning
The statements and opinions presented in this blog post are solely the responsibility of the author(s) and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute® (PCORI®), its Board of Governors, or the Methodology Committee.