Talking with someone who does not want hospice

This page is for family members whose loved one does not want to hear about hospice. It walks through the common fears behind a "no" and how to answer each one.

"No" is rarely the whole answer. Someone refusing hospice is usually refusing one specific picture of it. That picture is often wrong in ways nobody has corrected yet.

NCI's clinical summary lists the misconceptions patients bring to this decision:

• That hospice speeds up death through the use of opioids.
• That hospice is only for the final days of life.
• Fear of losing their current doctors.
• Uncertainty about coverage and who is eligible.

Before arguing, just ask which of these is theirs. Different fears need different answers. Answering the wrong one gets you nowhere.

This fear is the one that most often goes unspoken, and NCI names it directly.

Do not have this conversation alone at the kitchen table. Ask the palliative care or hospice team to explain how symptom medicines are used and watched. A doctor answering the question is far more convincing than a relative repeating what a doctor said.

NCI also records what the evidence shows. Its summary states that the goal of opioids is to provide comfort, not to hasten death, and that hospice is linked to better quality of life for patients and families. Families are more likely to say their relative had a good death.

NCI lists this belief as a barrier too. The eligibility rule answers it directly. Hospice qualification rests on a prognosis of six months or less if the disease runs its normal course. NCI states that hospice care is not limited to the last days or weeks of life. There is no six-month cut-off either. Coverage has no time limit as long as the person keeps meeting the criteria.

Hospice is not only for the last few days.

NCI notes that patients may worry about losing continuity with their current health care providers. What hospice adds is a full team: nurses, a physician and medical director, social workers, chaplains, aides who are certified nursing assistants, volunteers, and therapy services as needed.

Ask the current oncologist a direct question: which relationships would continue? Hearing the answer from a trusted doctor eases this fear far better than reassurance from you.

Uncertainty about coverage and eligibility is the fourth barrier NCI names. It is also the easiest one to fix.

The Medicare hospice benefit covers:

• visits from the team
• home equipment such as a wheelchair, shower bench, and bedside commode
• prescription medicine for symptoms and for the terminal illness A hospice agency will explain the specifics for one person's situation before anyone signs anything.

One more fact worth using: NCI's summary states that a Do Not Resuscitate order is not required to enroll. Many people assume otherwise and refuse for that reason alone.

NCI states that once on hospice, patients can always change their mind and return to their former coverage.

That is often the most useful thing you can say. A decision you can reverse is much smaller than one that feels permanent. People who will not agree to something forever will sometimes agree to try it.

Meeting a hospice team just to ask questions commits nobody to anything either.

Some people understand the facts fully and still say no. NCI's summary is clear that hospice does not fit someone who wants active cancer treatment, a clinical trial, or hospital readmission for complications. Wanting those things is a fair position, not a misunderstanding.

If that is where things stand, ask different questions instead: what happens next, what support exists in the meantime, and what would change their mind later.

NCI's summary notes that oncologists can be hesitant to raise end-of-life planning. That means the conversation can stall on both sides. Ask the oncology social worker or the palliative care team to lead it. That takes the weight off the family and puts the facts in the hands of people who can answer follow-up questions on the spot.