By Kurt Merkelz, M.D. FAAHPM, Chief Medical Officer, Compassus
Just before a recent procedure, an anesthesiologist asked me, “You don’t have any questions for me, do you?”
Later, I realized how much that phrasing mattered. Questions can either invite conversation or unintentionally shut it down.
I think about that often when it comes to serious illness. Too many families aren’t asked the questions that matter most until they’re facing a medical crisis.
After years of caring for patients with serious illnesses, one thing has become increasingly clear to me: families are often asked to make some of life’s most important healthcare decisions before they’ve ever talked about what matters most.
Those conversations are rarely delayed because families don’t care. More often, they’re delayed because talking about aging, serious illness and hospice feels uncomfortable. We convince ourselves there’s still time, until there isn’t.
By the time many families begin talking about future care, they’re sitting in a hospital room after an unexpected diagnosis, a fall or another medical crisis. Decisions that should have been guided by years of conversation are compressed into hours or days. I don’t believe that’s how it has to be.
One of the reasons these conversations happen so late is that hospice remains one of the most misunderstood words in healthcare. Too often, people hear “hospice” and assume it means giving up or that death is imminent. That misconception doesn’t just shape how people view hospice, it delays conversations that could help families better understand their options long before hospice is ever appropriate.
The irony is that the best conversations about future care often have very little to do with medicine. They begin with questions about life. What gives you purpose? What does quality of life mean to you? If your health changed, what would matter most? Where would you want to receive care? Who would you trust to make decisions if you couldn’t?
Those aren’t questions reserved for the final chapter of life. They’re questions every family should feel comfortable discussing long before a crisis forces them to.
When adult children tell me, “My mom says she’s fine, and I don’t want to upset her,” I understand the hesitation. Independence is deeply personal, and conversations about accepting help can feel like conversations about losing control.
I’ve found it’s often more helpful to shift the focus. Instead of asking what someone can no longer do, ask what will help them continue doing the things they value most. That small change in perspective transforms the conversation from one about limitations to one about preserving independence.
Planning ahead is another way families can protect that independence. Documents such as a living will and durable power of attorney for healthcare aren’t simply legal paperwork, they’re an extension of a person’s voice. They give families confidence that they’re honoring the wishes of someone they love rather than guessing during an emotional moment.
Families should also know that today’s healthcare offers far more support than many people realize. Home health, palliative care and hospice each serve different purposes, but all are designed to help people receive care that reflects their goals, often in the comfort of home.
Perhaps the misconception I hope we change most is the belief that hospice is about giving up. In my experience, hospice is about focusing on what matters when time becomes especially precious.
When patients receive hospice earlier, they have more opportunity to manage symptoms, spend meaningful time with loved ones, make informed decisions and define hope on their own terms. Those are moments that families remember long after the medical details have faded.
I’ve never had a family tell me they wished they’d waited longer to have these conversations. I have heard many say they wish they’d started sooner.
If we want to change the way people experience serious illness, we have to change the way we talk about it. Hospice shouldn’t be the beginning of the conversation. It should be one part of a broader discussion about how we want to live, how we want to be cared for and what matters most when health changes. Those conversations won’t eliminate difficult decisions.
But they can ensure those decisions reflect the wishes of the person at the center of them, and that’s one of the greatest gifts we can give the people we love.
