Hospice and Black Families: What Medicare Actually Pays For

The hardest part of a parent's last months is often not the medicine. It is discovering, three weeks in, that there was a Medicare benefit that would have paid for a nurse, a hospital bed, the morphine, the oxygen, the home health aide, and a social worker, at no cost, and that nobody sat you down and told you it existed.

The Medicare Payment Advisory Commission reports to Congress every year on how the hospice benefit is used. In its March 2025 report, Table 9-2 gives the share of Medicare decedents who used hospice in 2023: 54.3% of white beneficiaries and 39.7% of Black beneficiaries. The overall figure was 51.7%.

The gap is not closing. In 2010 the same table showed 45.5% of white decedents and 34.2% of Black decedents, a difference of 11.3 percentage points. By 2023 the difference was 14.6 points. Both groups use hospice more than they did; the distance between them grew.

MedPAC says plainly that the reasons are not fully understood, and we are going to say the same rather than pick a tidy one. Researchers have pointed at cultural and religious beliefs, preferences about end-of-life care, and differences in advance care planning. A 2025 analysis in Innovation in Aging, using the Medicare Current Beneficiary Survey, found that after adjusting for age, sex, and region, non-white beneficiaries were 25% less likely to use hospice, and that income accounted for roughly a quarter of that effect. A quarter is real. It is also not most of it.

Under the Medicare hospice benefit, you pay nothing for hospice care itself when it comes from a Medicare-approved provider. That covers the hospice team's nursing visits, the aide, the social worker, the chaplain if you want one, medical equipment such as a hospital bed or oxygen, medical supplies, drugs for pain and symptom control, short-term inpatient care when symptoms cannot be managed at home, and bereavement support for the family afterwards.

Two small charges exist. A copayment of up to $5 for each outpatient prescription for pain and symptom management, and 5% of the Medicare-approved amount for inpatient respite care, which is short-term care in a facility so the family caregiver can rest.

Medicare also does not pay for treatment intended to cure the terminal illness once hospice is elected, or for drugs meant to cure rather than to relieve symptoms. Care for conditions unrelated to the terminal illness continues under regular Medicare. And any hospital care, ambulance ride, or outpatient visit that the hospice team did not arrange can land on the family as a full bill, so the rule is to call the hospice first, every time, including at 2am. That is what the 24-hour number is for.

Four conditions. The patient has Medicare Part A. A doctor certifies a terminal illness with a prognosis of six months or less if the illness runs its usual course. The patient accepts comfort care in place of treatment aimed at curing the terminal illness. The patient signs a hospice election statement.

The six-month figure causes more confusion than anything else in the benefit. It is a prognosis, not a deadline, and it is frequently wrong in the patient's favour. Hospice runs in benefit periods: two of 90 days, then an unlimited number of 60-day periods, each requiring recertification. Nobody is discharged for outliving a prediction. People do get better on hospice, sometimes because the symptom control is better than what they were getting.

MedPAC's 2023 figures show an average lifetime length of stay of 96.2 days and a median of 18 days. Read those two numbers together. The average is pulled up by a minority of long stays; the median says half of all hospice patients get 18 days or fewer. A benefit designed to support months of care is routinely used for under three weeks.

Three weeks is enough time to manage a crisis. It is not enough time for the thing hospice is actually good at: getting the pain regimen right, getting equipment into the house before it is needed at midnight, teaching a daughter how to move her father safely, and letting a family stop being an emergency response team for long enough to say what they wanted to say. If a clinician raises hospice and the family says not yet, the honest question back is what specifically would need to change to make it yes, because waiting for certainty usually means waiting past the point where the benefit can do its work.

You get to choose. A hospital discharge planner will hand you a name, and you are not obliged to take it. This matters more than it used to: MedPAC counted 3,434 for-profit hospices in 2019 and 5,068 in 2023, growth concentrated in a handful of states and severe enough that CMS imposed enhanced oversight on newly enrolled hospices in Arizona, California, Nevada, and Texas. Most agencies are good. Enough are not that the choice is worth ten minutes.

Medicare publishes quality data on every certified hospice, and we mirror it: our hospice directory lists every Medicare-certified hospice provider by state and city, with the federal data each one reported. Look up the two or three serving your area before you pick.

Then ask each of them the same questions. Who comes to the house, how often, and is that a nurse or an aide? Who answers the phone at 2am, and is that person a nurse or an answering service? How fast does someone physically arrive in a crisis, at night, on a Sunday? Have you cared for patients in my parent's neighbourhood, and can you say which? What will we owe each month, in writing, including room and board if a facility is involved? What happens if we want to revoke? Answers that arrive as brochures rather than specifics tell you something.