What hospice offers the family, not just the patient

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, with caregiver distress sometimes exceeding 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 specialised 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 counsellor gives emotional support.
• Volunteers sit with the patient so you can leave the house.

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

The Medicare hospice benefit covers durable medical equipment. 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.

The National Institute on Aging describes respite as short-term relief for primary caregivers. It can be given at home, in a facility, or through adult day programs. It can last from a few hours to several weeks. Medicare covers most of the cost of up to five consecutive days of respite care in a hospital or skilled nursing facility for someone receiving hospice care.

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

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 organised 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. One hospice may run structured groups. Another may offer phone contact now and then, plus referrals.

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.

NCI's summary on grief ties a child's understanding of death to their stage of development. It recommends honest talk using accurate words such as "died" rather than softer phrases. It also recommends explanations that fit the child's age, and including children in memorial services. NCI notes that children commonly worry about three things. Did they cause it? Will it happen to them? Who will look after them?

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 families being shown comfort measures. Keep the person warm, but not with electric blankets. Offer ice chips, or moisten the mouth and lips. Reposition the person and raise the head of the bed. Aim a cool fan at the face for breathlessness.

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.