The Right Time Today

Know Your Destination

A Note From Tonya

September took me from conversations with patients and families here at home to conversations with legislative staff in Washington, D.C., at HPNA on the Hill. The settings were different, but I kept hearing the same need: people want to understand their options and have a say in what happens next.

Sometimes a treatment is recommended, but insurance will not cover it and no one explains what to do next. Sometimes hospice is discussed only when a person is actively dying, even though support could have helped sooner. And sometimes a person has talked about their wishes, but the next care team cannot find that information.

Each of these moments reminds me why I believe in planning before a crisis. Planning starts with knowing where you want to go. This October, I want to begin with a question that belongs to each of us, at any age: What does being healthy mean to you?

It might mean having the energy to work, managing symptoms so you can enjoy time with family, staying active, feeling comfortable, or being able to make your own choices.

Your answer gives your healthcare team something more useful than a generic goal. It tells them what matters to you.

One Thing to Do This Month

Finish this sentence: “For me, being healthy means being able to ______.”

Then think about one thing that helps you get there and one thing that is getting in the way. Write your answers down or bring them to your next appointment. They can help you and your provider talk about whether your current care plan supports the life you want to live.

When a Care Plan Hits a Roadblock

In September, I wrote about a sentence I hear too often: “Insurance won’t cover it, so I just live with it.” A denied treatment can feel like the end of the conversation, especially when you are already tired, in pain, or worried about the cost.

If this happens to you, ask what was actually denied and why. Ask your provider whether there are other treatments, whether more information could support the request, and what the next step is. The answer may not be simple, but you deserve to understand your options before deciding that there are none.

Support Can Start Earlier

I also spent time this month talking about hospice and palliative care. Too often, families hear about these services late or come away believing that accepting support means giving up. Good conversations about serious illness should make room for questions about symptoms, comfort, goals, and the support available alongside the care already being provided.

You can ask about palliative care or hospice before a crisis forces the conversation.

Asking for information does not commit you to a decision. It helps you understand what support may fit your needs and when.

Making Your Wishes Known

CMS, (Centers for Medicare & Medicaid Services), has adopted a new hospital measure related to documenting advance care planning. I welcome more attention to these conversations. I also keep asking what happens when a person moves from home to a hospital, a rehabilitation center, or another care setting. A document in one record may not be available to the next team.

Talk with the person you would want to speak for you.

Tell them what matters to you and where your important documents are kept. If you have documented wishes, ask how they will be shared when your care setting changes.

Looking Ahead

This month, we will keep building a healthcare plan the way we might plan a meaningful trip: first know your destination, then consider what you need to get there and what you will do when the route changes.

You do not have to have every answer today.

Start with what healthy means to you. That is a good place to begin.