When it may be time for hospice

Start with changes, not a checklist

Describe what you have noticed over time and what is different now. Spending more time asleep, having less energy for conversation, or needing more help can be important observations. These changes have many possible causes; they do not by themselves prove that someone is dying or qualifies for hospice. A clinician needs to assess the whole picture.

• What has changed?: Write down concrete examples, such as an activity that was possible last month but is difficult today, and when the change began.
• What is most difficult?: Explain the symptom, care task, or repeated decision that is placing the greatest strain on the person and family.
• What does your loved one want?: Include their own words about comfort, being at home, treatment, and time with people they love.

Ask what treatment can realistically accomplish

When an illness is advanced, it can help to revisit the purpose of each treatment. Ask whether it is intended to cure the illness, slow its progress, relieve a symptom, or offer some combination of these benefits. Discuss the likely benefit, burdens, and alternatives in terms of the person’s everyday life. This can reveal whether the current plan still fits their goals.

Let the medical team assess eligibility

For the Medicare hospice benefit, physicians must certify a prognosis of six months or less if the terminal illness runs its normal course. Eligibility is based on medical judgment and documentation, not one diagnosis, age, or symptom alone. Ask what information the hospice needs from the treating clinician and what happens if hospice is not appropriate yet.

It can help to ask before a crisis

Hospice can support eligible people for months, rather than only during their final days. An earlier discussion gives you an opportunity to understand services and make a plan while there is more time to consider choices. It is also reasonable to ask about palliative care or other support if treatment of the disease remains the goal.

Questions to bring to the conversation

You may need more than one conversation. Ask the team to slow down, explain unfamiliar words, and provide a written outline. If the person can participate, make space for their questions first. If you are calling on their behalf, share what they have said previously and who is authorized to make decisions when needed.

• About the illness: What is the likely course from here, and what uncertainty should we expect? Which changes would mean we should talk again?
• About daily care: What help will the person need between visits? What happens if our family cannot safely provide that help?
• About our next step: Could we arrange an informational visit or an evaluation? Who should we call if symptoms change while we are deciding?