How Families Decide When to Begin Hospice Care

Hospice is a defined insurance benefit, not a place and not a philosophy you have to sign up to. Under Medicare Part A it pays for a team: nurses, a doctor, an aide, a social worker, a chaplain, volunteers, and bereavement support for the family for a year after the death. It covers medicines for symptom control, oxygen, a hospital bed, a commode, and a nurse reachable by phone at any hour. Most of it happens wherever the person already lives.

Two doctors, usually the hospice physician and the person's own doctor, certify that the prognosis is six months or less if the illness runs its usual course. That is a prediction about a population, made about one person, and doctors are routinely wrong in both directions. It is not a deadline. Coverage is structured as two 90-day periods followed by an unlimited number of 60-day periods, each renewed by recertification after a face-to-face visit. People who live longer keep hospice. People who improve enough to no longer qualify are discharged, and can enrol again later.

Federal regulation allows the patient or their representative to revoke the hospice election at any time. Standard Medicare coverage resumes for the benefits hospice had waived, and the person may elect hospice again for any future benefit period. Families sometimes revoke to try a newly available treatment and re-enrol afterwards. Nothing about the decision is permanent.

The election waives treatment aimed at curing the terminal illness. It does not waive treatment aimed at how the person feels. Depending on the programme, that can include palliative radiotherapy for a painful bone lesion, draining fluid from the abdomen or chest, antibiotics for a symptomatic infection, oxygen, and sometimes transfusions. Programmes differ substantially in what they will fund, and this is worth asking about by name before you enrol rather than after. Medicare also continues to pay for care of health problems that are not part of the terminal illness.

In the most recent national data, the median lifetime length of stay in hospice was 18 days. A quarter of patients were enrolled for five days or fewer. One in ten had two days or fewer. Just under half of Medicare decedents used hospice at all. Those numbers describe a benefit designed for months being used for days. Families who enrol late almost always say the same thing afterwards: the first week goes on paperwork, equipment deliveries and getting symptoms under control rather than on time together.

There is no threshold that settles it, but some changes reliably prompt the conversation: spending more than half the day in bed or a chair, needing help with dressing, washing or stairs that was not needed a few months ago, steady weight loss, two or more unplanned hospital admissions in a short period, treatment that is no longer holding the cancer, or symptoms that now dominate the day. A useful question to put to the oncologist is whether they would be surprised if the person died within the next six to twelve months.

Hospice covers services, not rent. Room and board in a nursing home or assisted living is generally the family's cost, which surprises people. Inpatient respite has a small coinsurance. Someone still has to be in the house doing hands-on care between nurse visits, and hospice does not replace that person; deciding who that will be, and what happens when they are exhausted, is part of the decision. If the answer is that no one can, say so out loud to the hospice social worker at the assessment rather than discovering it in week two.

• Medicare Hospice Benefits booklet (CMS product 02154)
• 42 CFR 418.28, Revoking the election of hospice care
• Medicare Benefit Policy Manual, Chapter 9: Coverage of Hospice Services
• NCI PDQ, Planning the Transition to End-of-Life Care in Advanced Cancer