How do you talk to a parent about hospice?

Who decides about hospice?

The patient decides, as long as they can understand the choice. Choosing hospice is your decision. You can stop hospice at any time and return to regular Medicare coverage. You have the right to choose your hospice.

If the person can no longer decide, California law sets an order in Probate Code section 4712. First comes a surrogate the person named by telling their doctor. Next is the agent named in an advance health care directive, then a court-appointed conservator. If there is none, the doctor or facility may choose an adult who knows the person's values and is willing to serve. That can be a spouse or domestic partner, an adult child, a parent, a sibling, a grandchild, another relative or a close friend. See advance directives and POLST in California.

How do you start the conversation?

These steps follow advice from the National Institute on Aging and The Conversation Project. You may need more than one talk.

1. Step 1

   Get ready

   Learn the basics of hospice first. Decide who should be in the room. Your parent may want one trusted person, or the whole family.

2. Step 2

   Pick a calm moment

   Choose a quiet time at home, not the hospital hallway or a holiday dinner. Sit down. Turn off the TV.

3. Step 3

   Ask permission

   Try: "Can we talk about how you've been feeling, and what you'd want if things get harder?" If the answer is no, say: "That's okay. Can we come back to it next week?"

4. Step 4

   Ask what they understand

   Try: "What have the doctors told you about where things are heading?" Listen before you correct anything.

5. Step 5

   Ask what matters most

   Try: "What's most important to you now?" or "What worries you most?" Many people say staying home, less pain, or fewer trips to the hospital.

6. Step 6

   Connect hospice to their answer

   Try: "Hospice is a team that could help you stay home and keep you comfortable. You can stop it anytime."

7. Step 7

   Agree on one next step

   A question for the doctor, a call to a hospice nurse, or another talk. A small step is enough.

How do you explain hospice in words a parent can hear?

Keep it short. Hospice is care for comfort when an illness can no longer be cured. A nurse, an aide, a social worker and a chaplain come to the home. Many parents fear that hospice means giving up. Hospice means more care at home, focused on how they feel each day.

Avoid words that frighten, such as "nothing more can be done." Say what hospice adds. If your parent hears it as a final step, remind them they can change their mind. Read hospice myths and facts and what hospice care is.

How do culture and faith shape the conversation?

Families across the Inland Empire bring many traditions to this talk, whether Latino, Armenian, Black, Filipino or another background. No background tells you what one family wants, so ask. Some families want an elder or one adult child to speak for everyone. Some want a priest, pastor or other faith leader present. Some prefer that the patient not hear the word "dying."

Some people worry that hospice means care being held back, and for many Black families that worry has roots in a real history of unequal care. Say plainly that hospice adds care and that the person can stop it. If your parent prefers another language, ask for a qualified interpreter. Read culturally competent hospice care.

What questions should you ask the doctor?

Print this list or save it on your phone. Ask during a visit, or call the office.

• "Would you be surprised if my mother died in the next year?"
• "What do you expect over the next few months?"
• "Are the treatments still helping? What are they costing her in side effects and time?"
• "What would hospice add right now?"
• "Would you support a hospice evaluation?"
• "If it is not time for hospice, would palliative care help?"

What if family members disagree?

Disagreement is common. Bring the talk back to one question: what would your parent want? If they named an agent in an advance directive, that person speaks for them when they cannot.

A family meeting with the doctor or a palliative care team can help everyone hear the same facts. The National Institute on Aging also suggests a mediator, a professional trained to help people reach a shared decision. Some families call a hospice together, on speaker, so everyone hears the same answers.

Common questions about talking about hospice