Palliative Care Isn't What Most People Think — and That Misunderstanding Is Costing Patients & Families
By Saint Francis Health System Staff
When people hear the words "palliative care," they often assume the worst: it means giving up, that treatment is over, that death is near.
That assumption keeps many patients and families from accessing support that could meaningfully improve their quality of life — sometimes for years.
It's time to clear that up.
Palliative Care vs. Hospice: What's the Difference?
These two terms are often used interchangeably, but they are not the same thing.
Palliative care is a supportive service focused on symptom management, quality of life and open conversations about goals and wishes — for anyone living with a serious illness, at any stage. It does not mean stopping active treatment. It means adding a layer of support alongside whatever treatment is already happening.
"Palliative care is focused on open discussions, symptom management, and quality of life for people living with a serious illness," said Jordan Brown, D.O., a palliative care specialist at Saint Francis. "It does not mean you're giving up active treatment. We often describe ourselves as 'quality-of-life specialists.'"
Hospice care is a special type of palliative care that typically begins when curative treatments are no longer effective, and a patient is believed to be within the last six months of life.
It shifts the focus entirely toward comfort, meaning and quality of remaining time.
The key difference, as hospice specialist Bart Rider, D.O., puts it: "Palliative care can begin at the onset of a serious illness and continue throughout the course of treatment. Hospice care typically begins when curative treatments are no longer effective."
When Is the Right Time to Start?
Earlier than most people think.
"If you're wondering whether it's time to consider palliative care, that's often a sign that it probably is," Dr. Brown said.
Pain, repeated hospitalizations, uncertainty about a diagnosis — any of these are good reasons to seek palliative support.
Conditions that particularly benefit from early palliative care involvement include:
- Advanced cancers
- ALS
- Parkinson's disease
- Dementias and other progressive neurological illnesses
Dr. Rider is direct with patients and families about timing: "These conversations shouldn't happen only during the last 30 days of life. They should be ongoing discussions that evolve as a person's condition changes."
Early conversations don't take away hope. They create clarity — and clarity makes every decision that follows easier and better aligned with a patient’s wishes.
What Patients Actually Worry About
It might surprise you to learn that pain isn't the most common fear Dr. Rider encounters in his patients. It's loss of autonomy — the fear of losing the ability to make their own decisions or care for themselves.
Close behind that: worry about loved ones. What will happen to a spouse? Will the family manage? The emotional and practical impact on family members weighs heavily on patients, often more than their own physical comfort.
Palliative care and hospice each make space for all of it.
More Than Medication
Palliative and hospice care both address far more than physical symptoms; serious illness affects entire families — emotionally, spiritually, practically and relationally.
A palliative care team may include physicians, nurses, social workers, chaplains and home health aides, all working together to support patients and the people who love them.
One of the biggest needs we see is help navigating family conversations and emotional stress, particularly when treatment decisions become difficult."
— Dr. Brown
Caregiver burnout is also real and common — especially for spouses or family members providing care largely on their own. Having a palliative care team involved can provide resources, education, respite and the reassurance that no one has to figure this out alone.
What Hospice Can Really Look Like
The most persistent myth about hospice is that it means going to bed, receiving heavy medication and waiting to die.
Dr. Rider has seen firsthand how wrong that picture is.
One of his patients — a man with metastatic pancreatic cancer who had been through multiple hospitalizations — entered hospice bedbound and needing extensive assistance.
In conversation, he mentioned a lifelong dream: visiting Mount Rushmore. As his cancer treatment stopped and his symptoms improved, Dr. Rider's team coordinated with hospice agencies along the travel route to ensure support would be available.
The patient safely made the trip with his family. He came home, continued to enjoy meaningful time with loved ones and passed away several months later.
That story captures what hospice is really about; helping patients focus on what matters most to them."
— Dr. Rider
The Role of Advance Care Planning
Having documented wishes and a designated healthcare proxy transforms what happens during a medical crisis — for patients, families and care teams alike.
"Families often don't know what their loved one would want, simply because they've never discussed it," Dr. Brown said. "Advance care planning provides a framework that helps guide decisions during medical crises."
It doesn't require a formal document to get started. Having the conversation — and making wishes known — is the first and most important step.
One Question at the Center of It All
Everything in palliative and hospice care comes back to one question, as Dr. Rider puts it simply: "What do you want?"
It may sound straightforward, but it can be one of the most important conversations a person ever has — and one of the most meaningful things a care team can offer.
If you or a loved one is living with a serious illness and you'd like to learn more about palliative care or hospice support, talk to your primary care provider or specialist about a referral.
You don't have to be at the end of the road to ask for help along the way.
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