Questions to ask a hospice

Before you choose a hospice, it helps to be sure hospice is what you are choosing. Hospice and palliative care get used as if they mean the same thing, and they do not. Palliative care relieves symptoms and stress, and it can run alongside treatment meant to cure your illness, at any age and any stage. You keep your own doctor. Hospice, as the National Institute on Aging puts it, is a specific type of palliative care that is provided in the final weeks or months of life, once treatments aimed at curing the illness have stopped and the focus turns fully to comfort.

The practical difference is what you are agreeing to. To elect Medicare's hospice benefit, a hospice doctor and your own doctor certify a life expectancy of six months or less if the illness runs its normal course, and you sign a statement choosing comfort care over treatment aimed at a cure. If you are not there yet, palliative care may be the better fit for now. This checklist is the hospice-specific companion to our broader questions to ask your doctor guide, which covers how to prepare for any hard medical conversation.

Hospice is built for the final months, but most families reach for it in the final days. Half of hospice patients are enrolled for about 19 days or less, and more than a quarter get five days or fewer, according to federal data. By then, much of what hospice offers (the steady nursing, the symptom control, the support for the whole family) never has the time to work.

You do not have to wait for a doctor to raise it. Anyone can ask for a hospice evaluation, and Medicare even covers a one-time conversation with a hospice medical director to talk it through, whether or not you decide to enroll. As the National Institute on Aging notes, people often do not begin hospice soon enough to take full advantage of it, and starting earlier can mean months of meaningful care and time at home instead of a few rushed days. If you find yourself wondering whether it is time, that wondering is usually the sign to ask.

When it is the right time, the Medicare hospice benefit is generous and the out-of-pocket cost is small. It covers the hospice doctor and nurses, the medications for pain and symptoms, the medical equipment and supplies, a hospice aide, physical and occupational therapy, a social worker, a chaplain, dietary and grief counseling, and short-term inpatient or respite care. You will usually pay no more than $5 for each prescription for symptom relief and 5 percent of the approved amount for inpatient respite, and there is no deductible.

Here is the part that catches families off guard. The hospice benefit does not pay for room and board. If your parent gets hospice at home, or lives in a nursing home or assisted living, Medicare covers the hospice services but not the rent, and that bill is still yours. Ask about it directly before you assume hospice covers everything. It is also worth knowing that every Medicare-certified hospice has to offer four levels of care: routine care at home, continuous home care during a crisis, general inpatient care when symptoms cannot be controlled at home, and inpatient respite so a caregiver can rest. Ask whether the hospice you are considering actually provides all four, because not all of them do in practice.

Hospices vary more than most families realize, and the ones you call are not the place to find that out, because they have a bed to fill. Two questions reveal the most. First, after hours: who answers at 2 in the morning, and if your person is in distress, does a nurse actually come to the house, or is it advice over the phone? Medicare requires a hospice nurse and doctor to be on call around the clock, but on call is not the same as a visit, and that gap is exactly where a stretched hospice shows. Second, the crisis levels: does this hospice really provide continuous home care and general inpatient care when comfort cannot be managed at home, or does it only do routine visits?

You can also check the record yourself. Medicare's Care Compare publishes a survey of families who used each hospice, including how many would recommend it. Most hospices are now for-profit, and research has found that families at nonprofit hospices report somewhat better experiences on average, though the researchers who found that caution that profit status is not a reliable stand-in for quality, because there is wide variation within both. So ask whether the hospice is nonprofit or for-profit and how long it has operated, check its score, ask for a few references, and pay attention to how it answers. A good hospice meets hard questions with straight answers.

One fear keeps families from choosing hospice sooner than almost any other: that it means giving up, and that there is no going back. Neither is true. You always have the right to stop hospice at any time and return to treatment for your illness, and you can re-enroll later if you change your mind again. You can keep seeing your own doctor, who can stay involved in the care. And if the hospice you chose turns out not to be the right fit, you can switch to another one. Choosing hospice is a decision about comfort, not a door that locks behind you.

Hospice is a handoff. A new team of nurses, aides, and a doctor arrives, often quickly, and they do their best work when they walk in already knowing what your person takes, what they have been through, and what matters to the family, instead of piecing it together. Hand the hospice team one current medication list on day one, and when more than one person is helping, a shared daily log keeps the family, the aides, and the nurses working from the same page.

That shared picture is what KeptWell is built to hold. Upload the records once and the binder reads them, keeps the medication list current, and gives the whole circle, family and care team alike, one plain-English record they can all see. Here is how it works, and it is free today, with an honest plan for what comes next. This is part of our work helping families caring for an aging parent keep everyone on the same page.