Hospice is primarily a service, not a place. The majority of Americans who enter hospice receive care in the home. A much smaller percentage get their care in hospitals, dedicated hospice facilities, or long-term care facilities.

1. Hospice doesn’t mean full-
time nursing.
Some agencies offer four-hour allotments of so-
called continuous care in cases of emergency (for
example, if the caregiver gets sick, or if the patient’s
pain suddenly increases). But for the most part,
hospice services in this country don’t mean full-time
nursing.
So if your loved one has difficulty bathing or going to
the bathroom on his or her own, many families pay
out-of-pocket expenses for additional nursing or
home health aide assistance. And if the person is in a
nursing home, Medicare doesn’t cover the room and
board charges. Patients must have insurance that
covers these costs, or else families will have to pay
for them.

2. Offering access to services isn't the
same as providing them.
Medicare-certified hospice providers must offer patients the
services of registered nurses, home health aides, hospice
physicians, and chaplains. But aside from the requirement that
a nurse visit once every two weeks, Medicare doesn’t regulate
how often those services are actually provided. In most cases,
this works out fine.
Every person is different, and giving hospice agencies some
flexibility makes sense. On the other hand, patients and their
loved ones should be aware that a hospice agency has a lot of
latitude in determining what services it provides. So families
should ask—and push, if necessary—for additional services
they believe are needed.

3. Every patient is required to
have a care plan.
One way to keep tabs on the services provided is to
ask for a copy of the care plan, which Medicare requires
each patient to have. The plan should spell out, for
example, how often a home health aide will visit.
Medicare also requires that hospice agencies keep
records showing the care plan has been followed.
The plans should be reviewed every two weeks and
adjusted as the person’s condition changes. Families can
ask for a copy of the care plan.

4. Patients don’t have to give up
their doctors.
Sometimes people are hesitant about hospice
because they think they can’t keep their doctors.
Similarly, doctors may fear that they're going to lose
control over their patients’ care. But Medicare encourages
doctors to “follow” patients into hospice, with hospice
medical directors remaining in the background as
consultants.

5. Hospice doesn’t mean the end
of medical care.
even if it prolongs life. Under Medicare, patients in
hospice agree not to get curative treatments for a
terminal condition. But treatment may continue if it’s
keeping the person comfortable or if it’s treating
conditions unrelated to the terminal illness.
Hospice patients sometimes receive life-prolonging
treatment for its own sake, unrelated to pain or other
physical symptoms, if the extra time would serve
some spiritual or emotional need (for example, giving
a loved one time to visit).

6. Volunteers are vital.
Many community hospices have large groups of
volunteers who can give families an occasional
break so they can run an errand, take a nap, or
attend to a child. One advantage some nonprofit
hospice programs have over their for-profit
counterparts is their volunteers.

7. Bereavement counseling is
supposed to be available.
Hospice services shouldn’t end when the patient
dies. Medicare requires agencies to provide
bereavement services to families for up to a year
after the death. Bereavement itself can have
debilitating consequences.
There’s little oversight of the bereavement
requirement, so hospice agencies may not always
provide the services they should.