Takeaway
Start advance care discussions early to clarify patients' values and prevent rushed, high-stress decisions later. These conversations can help patients retain agency and spare families the burden of guessing their loved one’s wishes.
Lifelong learning in clinical excellence | April 27, 2026 | 2 min read
By Ivy Akid, MD, MPH, Johns Hopkins Medicine
Advance care planning is planning ahead for situations no one wants to be in—medical emergencies and/or the end of life. People fear having these conversations, as they equate them with “giving up,” “hospice,” or as “signing away treatment.” But these discussions are actually about keeping agency, preparation, and love. It’s often documented through an advance directive—but what’s most important is to start the conversations. When we have these discussions with patients and their loved ones, it helps them prepare for medical uncertainty or a crisis, so they don’t feel the burden of decision making. It’s a way of bringing clarity for patients, families, and providers.
It can be uncomfortable to bring up this topic—patients may feel we’re “giving up” on them. However, it’s best to have the discussion when things are going well—not in a time of crisis where decisions need to be made quickly and emotions are heightened.
An example where advance care planning helped:
As a palliative physician, I cared for a father who had a sudden stroke and couldn’t speak for himself. His adult children were heartbroken and struggled to decide what to do. Then they found out he had an advance directive. He’d wrote that he didn’t want to be kept alive on machines or get a feeding tube. Because of this, the children didn’t carry the weight of that decision. Instead, they were able to honor their dad’s wishes and advocate for him.
An example where advance care planning could have helped:
I also had a patient with advanced dementia who was having repeated episodes of aspiration. Over time, his cognitive decline became so severe that he could no longer meaningfully communicate or make decisions for himself. His wife agreed to a feeding tube because she was terrified of losing him. But even with the feeding tube, he continued to aspirate. Later, he became critically ill, ended up in the ICU on a ventilator, and ultimately died. What stayed with me was how much distress his wife carried for months leading up to that point. It made me wish they’d had these conversations earlier—about what quality of life meant to him, what he would or wouldn’t want if his dementia became very advanced, and how to think about interventions like feeding tubes or breathing machines. Because when those conversations don’t happen ahead of time, there’s suffering for both patients and loved ones.
Here are few questions I ask to guide conversations with patient and families about advanced care planning:
1. What matters most to you if time becomes short?
2. What abilities are so important that life would feel very different without them?
3. Who will speak on your behalf and carry out your wishes if you can’t speak for yourself?
Advance care planning is about preparing with intention and compassion. By having these conversations before a crisis, the burden of difficult decisions is reduced. Starting these discussions early is one of the most loving and empowering acts we can take.
Read more on this topic in a piece by the author in the “LAWire,” “Finding Beauty in the Hardest Conversations.”
This piece expresses the views solely of the author. It does not necessarily represent the views of any organization, including Johns Hopkins Medicine.