Talking about hospice: with the person, the family and the doctor

Hospice almost always starts with a conversation, and for many families it’s the hardest one they have. Who brings it up? What if the person isn’t ready, or a brother says it means giving up? This note covers the words that help, how to bring a family onto the same page, what to ask the doctor, who decides when the person can’t, and the help a hospice team gives with the conversation itself.

The short answer

• The person who is ill has the most important voice. If they can’t make decisions, the agent named in their advance directive decides for them.¹
• Medicare covers advance care planning as part of the yearly Wellness visit, at no cost when the provider accepts assignment.²
• Before choosing hospice, a person can get a one-time consultation with a hospice medical director or hospice doctor.³
• When a family can’t agree, a mediator, a second opinion, the hospital’s ethics committee or a palliative care consultation can help.⁴
• On hospice, the person and family are part of the team, along with social workers and counselors.³

Words that help

• Ask before you tell. “Would it be all right to talk about what’s ahead?” gives the person the choice of when.
• Start with what matters, not with services. The Conversation Project, an initiative of the Institute for Healthcare Improvement, suggests finishing one sentence: what matters to me through the end of my life is…⁵
• Say the word. Talking around hospice makes it harder to ask the real questions.
• Talk about what can still be done. Hospice care keeps coming: visits, medicines for pain and symptoms, equipment, and support for the family.³
• Let it take more than one talk. A first conversation can end with “let’s come back to this,” and that still counts.

When the person isn’t ready

Let the person set the pace, and ask what worries them about the word. If it’s losing their doctor or being locked in, neither is how hospice works: the person can keep their regular doctor, and can stop hospice at any time.³

Sometimes the next step is information, not a decision. The one-time consultation with a hospice doctor is there for exactly that.³ And palliative care can bring comfort and support while treatment continues. When is it time for hospice? covers the signs and Medicare’s rules.

Bringing the family onto the same page

Ask the doctor or the hospice for a family meeting, so everyone hears the same information at the same time, with a phone or video line for the ones who live far away.

When the disagreement doesn’t settle, the National Institute on Aging suggests a mediator, someone trained to help people with different views reach a common decision. A second opinion from another doctor, the hospital’s ethics committee or patient representative, or a palliative care consultation can also help.⁴

If the worry is that hospice means giving up, look at what it actually is: comfort care in place of care to cure the terminal illness,⁶ with the hospice team still coming to the house. Hospice myths, and the facts answers the rest of what families hear.

Traditions and faith

It helps to talk about personal and family traditions with the doctors and nurses, so they can be honored.⁴ A hospice must assess spiritual needs, offer spiritual counseling in keeping with the family’s beliefs, and make all reasonable efforts to arrange visits by local clergy or other spiritual advisers.⁷

What to ask the doctor

These questions draw on guides from the Conversation Project and the National Institute on Aging.^5,4 Write the answers down, and bring a second person if you can.

• What should we expect from this illness over the coming weeks and months?
• What big changes should we be ready for?
• What would this treatment change, and what are the other choices, including stopping it?
• What are the side effects of what you’re suggesting, and what happens if it doesn’t work?
• Would hospice help now? Could a hospice team come and talk with us?

Who decides when the person can’t

In California, an advance health care directive lets a person name an agent to make health care decisions for them if they become unable to make their own.¹ When the person’s wishes aren’t known, the agent decides based on what they believe is in the person’s best interest.¹

Without a directive, the National Institute on Aging describes two ways to decide: put yourself in the person’s place and choose as they would, or decide what would be best for them.⁴ Advance care planning in California and POLST in California explain the forms.

Help from the hospice team

Once hospice starts, the person and family are part of a team that may include doctors, nurses, counselors and social workers.³ Counseling for the person and family is a core hospice service, meant to ease the stress that comes with a terminal illness and with dying.⁷ The social worker and the spiritual counselor can help with exactly these conversations: a family meeting, a hard talk with a parent, a sibling who isn’t ready. Ask for them.

Write it down

Medicare covers advance care planning as part of the yearly Wellness visit, at no cost when the provider accepts assignment; as part of other medical treatment, the Part B deductible and coinsurance apply.² Give a copy of a signed directive to the doctor, the other health care providers, any facility where the person gets care, and the agent.¹