What else?

Response times. That’s part of hospices’ standardized surveys. They ask family members, after death, whether the staff was available on weekends and on evenings. It’s one of many measures that aren’t available to the public yet, but it’s a fair question to ask: What can you tell me about your staff’s response time should I need your services on the weekend or on evenings? How long will I have to wait in an urgent situation?

Aren’t all hospices that provide benefits through Medicare required to provide the same services?

There’s a set of services that’s standard, but how much, what the intensity is — that varies a lot. Consumers need to know that.

“Continuous care,” for instance. There comes a time when you’re actively dying, in your last hours of life, and that calls for continuous care, 24/7. You want to ask whether it’s their practice to keep a nurse or another clinician in the home when a patient is actively dying. Does the family get support? Do they see the patient through death?

You would hope that in the last hours of life, a hospice would maintain its presence, especially if you’re in your own home. But as the Washington Post just reported — and it was very disturbing — some hospices choose not to provide continuous care. In some states, a large percentage don’t, which basically means that when you’re actively dying, they don’t stick around.

Another important question: Do you have an inpatient facility, in case my symptoms become complicated? Most hospices don’t have their own facilities, but they can rent or manage a unit in a hospital or beds dispersed throughout a hospital or in a nursing home. The point is to have the capacity to manage your symptoms when they’re not manageable at home.

Respite care is a required service, right? To give families a break if caregiving for the patient becomes exhausting?

Yes, but it’s not specific, so it’s also a good question to ask: What kind of respite care do you offer, under what circumstances? Would it be a nurse or aide who comes, or a volunteer? Do you provide it once a week or twice? For how long?

It will be difficult for patients or families to undertake this research if they’ve waited until a few days before death. It sounds like another argument for enrolling in hospice early. But then, patients can get bounced from hospice if they don’t show measurable decline.

You have to assess your risk. If you’re a cancer patient, the issue of being discharged probably won’t come up. But if you have Alzheimer’s or A.L.S., they’re terminal diseases, but they can take years. You probably have to be prepared to go through reviews.

So you have to be realistic about how long hospice will take care of you. You’ll be aware of it. You won’t be surprised.

Reprinted with permission of New York Times Syndicate


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