What hospice offers the family, not just the patient

This page is for families of someone in hospice. It explains the hospice services meant for relatives, from respite to grief support.

Most families arrange hospice with one person in mind. Then they find out the service is built around the whole house. A good deal of it is meant for relatives, and they can use it directly.

NCI's summary on the last days of life spells out why. Across studies, caregivers were at increased risk of physical and psychological burden. Caregiver distress sometimes exceeded that of the patient. Because that suffering can affect the patient's wellbeing too, NCI says early identification and support of caregiver suffering are optimal. This is not a courtesy. It is part of the clinical model.

NCI's clinical summary of hospice lists the interdisciplinary team. That means people from different fields working on one plan of care. The list includes registered nurses, attending physicians, medical directors, social workers, chaplains, certified nursing assistants, volunteers, and specialized therapists as needed.

For a family, that works out roughly like this:

• The nurse manages symptoms. The nurse also teaches you what to expect and what to do.
• The home health aide helps with washing, dressing, and other hands-on care you may not want to do alone.
• The social worker handles practical matters, paperwork, and family strain.
• The chaplain is there for spiritual or existential distress. That help is for relatives as much as for the patient.
• The counselor gives emotional support.
• Volunteers are part of the team. Ask what they can do in your home.

NCI's patient page on the final days names that same set from the family's side. It lists visiting nurse, chaplain, counselor, home health aide and respite care as the services people receive.

The Medicare hospice benefit covers durable medical equipment, meaning reusable equipment for the home. That includes hospital beds, wheelchairs and commodes. It also covers prescription medicines for symptom management and for the terminal condition. In daily life, this lifts a heavy load of ordering and arranging off whoever has been running the household.

Hospice has four levels of care. They are routine care, continuous home care, general inpatient care, and respite care. Respite exists for a plain reason. Families cannot keep going forever without rest.

NCI describes respite care as temporary relief for caregivers. It is typically about 5 nights per 60 to 90 days. Medicare.gov says a copayment of up to 5% of the Medicare-approved amount may apply to inpatient respite care. Ask the hospice how to arrange it.

Asking for respite is using a covered service the way it was designed. You are not asking for a favor.

Families are least likely to know this part. NCI's summary states that bereavement care is mandatory. The Centers for Medicare and Medicaid Services require organized programs. Those programs must provide services for up to one year following the death of the patient.

NCI adds an honest caveat. Actual service offerings vary significantly across programs. NCI cites figures showing 98% of programs provide calls or cards, but only 79% offer grief support groups.

That is why the question is worth asking early. Ask while you are choosing an agency, not in the week after a funeral. Ask what the bereavement program really consists of. Ask whether it includes support for children.

Children grieve too. If there are children in the house, ask the hospice social worker what is available for them. That is a normal request.

Much of what hospice does for relatives is teaching. NCI's patient page on the last days describes comfort measures. These include regular blankets rather than electric blankets, ice chips or mouth swabs for dryness, repositioning, raising the head of the bed, and a cool fan for breathlessness. Ask your hospice nurse to show you.

Knowing what to do with your hands is its own kind of support. It matters when someone you love is uncomfortable. For many families, it is also the thing they remember hospice for.