Hospice

Hospice is care for someone with an illness that can’t be cured, when the focus shifts from fighting the disease to comfort and quality of life. A hospice team manages pain and other symptoms and supports the whole family emotionally and spiritually. Support for the family continues for a time after a death.

Palliative care is comfort-focused care for anyone with a serious illness, at any stage, and it can happen alongside treatment meant to cure the illness. Hospice is a kind of palliative care for people near the end of life who are no longer pursuing a cure. If your loved one still wants curative treatment, ask their doctor about palliative care instead.

No. Treatment aimed at curing the terminal illness stops, but medicines and care for pain and symptoms continue, and conditions unrelated to the terminal illness can still be treated. For example, someone on hospice for cancer can usually keep taking a blood pressure medicine. Ask the hospice team which medicines will continue and who pays for each.

Most hospice care happens wherever the person lives: a private home, a nursing home, or an assisted living community. Short inpatient stays in a hospital, nursing facility or hospice inpatient center can be arranged when symptoms can’t be managed at home or the family needs a break. The hospice team comes to the person, not the other way around.

Usually not. Hospice staff visit on a schedule, and a nurse and doctor are on call by phone 24 hours a day, but family and friends typically handle most day-to-day care. During a short medical crisis, Medicare allows hospice to provide mostly-nursing care for long stretches at home to avoid a hospital stay. Many families add paid in-home caregivers if they need more hands.

Medicare recognizes four. Routine home care is regular visits wherever the person lives. Continuous home care is extended nursing care at home during a brief crisis. Inpatient respite is a short facility stay so the caregiver can rest, and general inpatient care is a facility stay for pain or symptoms that can’t be controlled at home.

The person must have Medicare Part A, and the hospice doctor and their regular doctor (if they have one) must certify a life expectancy of six months or less if the illness runs its normal course. The person must also choose comfort care instead of curative treatment and sign a hospice election statement. Only doctors can make the medical judgment, so start with the person’s physician.

That happens, and it’s fine. Medicare hospice runs in two 90-day benefit periods followed by an unlimited number of 60-day periods. Before each new period the hospice doctor must recertify that the person still qualifies, and after the first six months that includes an in-person visit from the hospice doctor or nurse practitioner.

Talk with the person’s doctor about how the illness is progressing and whether hospice makes sense now. You can also call a hospice directly and ask for an informational visit. If the person qualifies and wants hospice, they (or their legal representative) sign an election statement naming the hospice, the start date and the attending doctor.

Worth raising when treatments are no longer working, when the person no longer wants them, or when hospital trips are becoming frequent. Many people start hospice only in the final days, but beginning earlier can give months of better symptom control and support. Having the conversation early doesn’t commit anyone to anything.

Yes, when the dementia is advanced and a doctor certifies the six-month prognosis. Hospice can help with comfort, eating and swallowing problems, and caregiver stress near the end of life. The Alzheimer’s Association helpline can talk through what to expect at this stage.

Original Medicare pays for hospice from a Medicare-approved hospice at no cost for the hospice care itself. There can be a copay of up to $5 per prescription for drugs used for pain and symptoms, and 5% of the Medicare-approved amount for inpatient respite stays. A Medigap policy can help with those small costs.

It doesn’t cover treatment meant to cure the terminal illness, or care from providers the hospice team didn’t arrange. It also doesn’t pay room and board, so if your loved one lives in a nursing home or assisted living, the monthly rent and care charges usually continue. Call the hospice team before going to the ER or calling an ambulance for a related problem, or you could owe the full bill.

Original Medicare pays for hospice care related to the terminal illness even if the person stays in their Medicare Advantage plan. The plan can still cover care for other health problems and any extra benefits it offers. Call the plan and 1-800-MEDICARE to confirm how bills will be handled.

Yes, for Medicaid members who meet the medical criteria. For people who have both Medicare and Medicaid, Medicare pays first, and Medicaid can help with copays and, for nursing home residents, room and board paid through the hospice. Children under 21 on Utah Medicaid can receive hospice while continuing treatment for their illness.

Yes. Hospice is part of the standard VA health benefits for enrolled Veterans with a terminal condition who are no longer seeking curative treatment, and there are no copays for VA hospice, whether VA provides it or a community hospice under VA contract does. Start with the Veteran’s VA social worker.

Many employer and individual health plans include a hospice benefit, but the details depend on the plan, so call the insurer and ask what’s covered and whether the hospice must be in network. Some long-term care insurance policies can help pay for caregivers or room and board that hospice itself doesn’t cover. Ask the insurer what the policy requires before you file a claim.

Yes. The hospice can arrange a short inpatient respite stay in an approved facility, up to five days at a time, so caregivers can rest. It’s meant for occasional use, and under Medicare the person pays 5% of the approved amount. Ask the hospice how far ahead you need to request it.

Hospices must make bereavement support available to the family for up to a year after their loved one dies. That can include phone calls, visits, support groups or referrals to counseling. Ask what the hospice offers before you need it, so you know who to call.

Medicare’s Care Compare website lists Medicare-approved hospices and shows quality measures and survey results from families of past patients. Utah’s Office of Licensing has a public search for licensed providers and their recent compliance history. Ask your doctor, hospital social worker or friends who have used hospice for their experience.

Ask how quickly a nurse will come when you call at night or on a weekend, and how often each team member will visit. Ask which medicines, supplies and equipment they provide, what they won’t cover and why, and whether they offer continuous care and inpatient care when needed. Ask how they handle a move between home and a facility, and what their bereavement program includes.

Be cautious if anyone pressures a person who isn’t seriously ill to sign up, offers gifts or cash for enrolling, or asks you to sign forms you don’t understand. Another warning sign is learning your loved one was enrolled in hospice without anyone explaining it. If something seems wrong, Utah’s Senior Medicare Patrol helps families spot and report Medicare fraud and errors.

Yes. Under Medicare you can switch hospices once during each benefit period. Talk with both the current and new hospice so there’s no gap in care or medicines.

Yes, at any time. They sign a written statement ending hospice for the rest of that benefit period, and their regular Medicare coverage for curative treatment resumes. If they still qualify later, they can choose hospice again.

Sometimes a person stabilizes and no longer meets the six-month guideline. The hospice should give you a written notice at least two days before Medicare coverage ends, and you can ask Medicare’s independent quality reviewer for a fast appeal if you disagree. Follow the deadline printed on the notice, which is generally by noon the day before services end.

Start with the hospice’s own leadership, since they’re required to address complaints. For quality-of-care concerns under Medicare, 1-800-MEDICARE can connect you with the quality improvement organization that serves Utah. You can also file a concern with Utah’s Office of Licensing, which licenses hospices.

Home health is short-term skilled care at home, like nursing or therapy, to help someone recover or manage a condition, and it continues alongside regular treatment. Hospice is for the end of life, when the goal is comfort rather than cure. A doctor can help you decide which fits right now, and some people move from one to the other as their health changes.

Hospice can continue in a nursing home or assisted living community, with the same hospice team visiting. Medicare doesn’t pay the facility’s room and board, so plan for that cost, though Utah Medicaid can help pay room and board for eligible nursing home residents. A Utah Area Agency on Aging or SHIP counselor can help you think through payment options.