Choosing Where to Receive End-of-Life Care

It helps to know that this decision is common, and that it has been shifting.

CDC's National Vital Statistics System tracked place of death from 2000 to 2018. By 2018, 35.1 percent of deaths happened in a hospital or medical facility, down from 48.0 percent in 2000. Deaths at home rose from 22.7 percent to 31.4 percent. Deaths in long-term care facilities rose from 22.9 percent to 26.8 percent.

So home is now nearly as common as hospital. It is also the option that puts the most work on the family.

Home. The person stays in their own bed, with their own people and their own routine. Visitors come and go on your schedule. This is what most people say they want.

The National Institute on Aging is blunt about the trade: "Most of the day-to-day care of a person dying is provided by family and friends." A hospice team visits, and a nurse or doctor is reachable by phone around the clock. Nobody from hospice sits in the house all night as a matter of course. Bathing, toileting, turning, giving medicine, and being awake at 4 a.m. fall to whoever lives there.

Home works well when there are at least two people who can share nights, when the bathroom and bedroom are reachable, and when the family is willing to give medicine on a schedule.

Inpatient hospice facility. A building staffed for this work. Nursing is on site. Symptoms that are hard to control at home get handled faster. Families often describe the relief of going back to being family instead of being nurses.

Nursing home or long-term care facility. Often the answer when someone already lives there, or when there is no one at home. Hospice can come into a nursing home and layer its team on top of the facility staff.

Hospital. Still the right place when symptoms need intensive management, when the situation is changing hour by hour, or when a decision has not been made yet. It is also the default that happens when no other plan exists and someone calls 911.

This is the piece that unlocks most of the decision. Hospice is not a place. The National Institute on Aging puts it plainly: "Hospice can be provided in many settings — a private home, nursing home, assisted living facility, or in a hospital."

Medicare pays for four levels, and you can move between them as things change:

• Routine home care. The standard day at home, with scheduled visits.
• Continuous home care. Mainly nursing care at home, available only during brief periods of crisis, and only as needed to keep the person at home.
• Inpatient respite care. Up to 5 consecutive days in an approved facility, specifically so the caregiver can rest. You pay 5 percent of the Medicare-approved amount.
• General inpatient care. Care in a facility for pain control or acute symptom management.

If you are close to choosing home but worried about a bad night, ask how this hospice actually uses continuous home care and general inpatient care, and how fast they can start either one.

Medicare hospice covers the hospice services. It does not cover room and board.

That distinction decides many cases. Hospice care at home costs the family nothing for the covered services, but the family provides the labor. Hospice inside a nursing home means the hospice services are covered while the daily rate for living there is not, unless Medicaid or a long-term care policy picks it up. Medicaid does cover hospice in most states, though it is an optional state plan service, so what is available depends on where you live.

Ask the hospice social worker for a written answer to one question: with this plan, in this setting, what will our household actually pay each month?

There were about 5,800 hospice agencies in the United States in 2022, serving about 1.8 million patients. About 75.6 percent were for-profit. They are not interchangeable.

You can compare them through Medicare's Care Compare tool at Medicare.gov, or by calling 1-800-MEDICARE.

Questions worth asking before you sign:

• How often will a nurse visit in a normal week, and how long is each visit?
• Who comes at 2 a.m., and how long does it take them to get here?
• How often do your patients get continuous home care or general inpatient care?
• Do you have your own inpatient unit, or do you contract with a hospital?
• Which aide services are included, and how many hours a week?
• Is there a chaplain, and a social worker, and how often do they come?
• How much notice do we need to give for respite care?

A hospice nurse and doctor must be on call 24 hours a day, 7 days a week. Response time is what varies.

Before naming a setting, answer these out loud:

• Who is physically in the house overnight, and for how many weeks can they keep it up?
• Can that person lift, turn, and help with the toilet?
• Are they willing to give liquid morphine from a syringe at 3 a.m.?
• Is there a bed that can be reached from three sides, or space for a hospital bed downstairs?
• If the caregiver gets sick, what is the backup?

If the honest answer to any of these is no, that is not a failure. It is a fact that should shape the plan now rather than during a crisis. Naming it early is what keeps the choice from being made by an ambulance.

You always have the right to stop hospice care, and you can go back to hospice care at any time. You can change hospice providers once during each benefit period. If you name your own doctor as your attending medical professional, you keep seeing them. The benefit runs in two 90-day periods, then unlimited 60-day periods, with a recertification each time. Living longer than 6 months does not end the benefit.

The hospice team answers day or night. These are the situations that should trigger a change of setting.

• Call the hospice team the same day, or overnight, if pain is not controlled by the medicines you have on hand, breathing becomes distressing and the usual measures are not helping, the person is agitated or frightened and cannot be settled, or vomiting stops medicines from staying down.
• Call the hospice team within a day or two if the caregiver can no longer safely do what the plan requires.

Any of these can shift the level of care without moving to a different hospice, and often without giving up the plan to stay home. That is what the four levels exist for. Making the call early gives the team room to act.

• QuickStats: Percentage of Deaths, by Place of Death, United States 2000-2018 — Centers for Disease Control and Prevention, MMWR
• FastStats: Hospice Care — National Center for Health Statistics, Centers for Disease Control and Prevention
• Frequently Asked Questions About Hospice Care — National Institute on Aging
• What Are Palliative Care and Hospice Care? — National Institute on Aging
• Hospice care coverage — Medicare.gov
• Medicare Hospice Benefits booklet — Medicare.gov
• Medicare and Hospice Benefits: Getting Started — Medicare.gov
• Hospice levels of care — Centers for Medicare and Medicaid Services
• Hospice Benefits — Medicaid.gov
• End-of-Life Care for People Who Have Cancer — National Cancer Institute