I’ve talked to hundreds of people about the health care options and
decisions they face at the end of life. It’s a challenging time and
understandably many have little knowledge, while others have
misconceptions, and some have bitter disagreements.
Here’s a basic primer for two common approaches: hospice and palliative care.
Hospice care
Two
myths about hospice care are prevalent. First, many people believe
hospice is provided in a place like a hospital. While it’s true many
hospices have residential facilities, hospice care is usually given at
home.
Second, people often believe that with hospice, there is no
treatment but pain control. That’s not the case at all. Medical care
will continue as before, except that further attempts to cure the major
disease will stop. If a person gets a bladder infection, or pneumonia,
for example, regular treatment will be available. If the person chooses
to not go to a hospital for treatment of something like pneumonia,
treatment at home will be offered. And if a breakthrough cure of the
primary disease occurs, it will not be denied to the hospice patient.
Often
I am the first one to bring up hospice care with the patient or their
family. As geriatricians, my colleagues and I see many people with
incurable and late stage disease. (It’s important to know that hospice
care is available for all ages, though.) For patients and families,
electing hospice care means extra help for the family, and occasionally
the provision of helpful equipment. We bring up hospice care when we
believe the patient or family will benefit from these extra services.
Sometimes
it’s a touchy subject. I’ve been angrily yelled at by family who want
the patient to keep trying for cure, to keep taking chemotherapy, to try
more radiation, to go for more surgery or to some other country for
some unproven therapy. We frequently think these family members are
either uninformed or in denial. We sometimes wish they could feel their
loved one’s nausea, weakness and confusion from hopeless chemotherapy,
or their desperate struggle for air in advanced lung disease.
Sometimes
the cost of hospice is a concern. Medicare and most insurance companies
cover hospice care. Hospice is covered under Medicare Part A. There
is no deductible, and copayments are very low. The restriction is that
care must be coordinated by the hospice team.
Palliative care
Hospice
care is defined fairly clearly by Medicare and other insurers.
“Palliative care” seems more ambiguous – there is no standard definition
– and is often less understood than hospice care. Palliative care is
focused on making patients as comfortable as possible with an emphasis
on maximizing the quality of daily life. It is provided in different
ways. In our Palliative Care Consult Service, we provide suggestions to
the regular treating physician and to the family, usually about pain
and other symptoms. Our consult service often includes a social worker
and a faith community representative.
Bitter disagreements about
end of life care come not only from family members but also from
providers. About 15 years ago, when I was with the National Institute
on Aging, I had a discussion with an oncologist who represented a
professional society. He argued that there should be no limit on
chemotherapy, up to the point of death. We discussed a new therapy that
would add one month of life expectancy to a geriatric patient. His
position was that regardless of the intense side effects it caused, it
should be prescribed and encouraged. My position was it should be
discussed with the patient, and if it is declined, that decision should
be respected. Now years later, that controversy persists, not just among
oncologists. Terminal care is also provided by pulmonologists,
cardiologists, and generalists, for example, some of whom advocate
intensive care to the end, while others respect the patient’s request
for limited care.
Two continents
This basic
primer is like a map. “There is North America, and there is Europe.”
They are separated by an ocean, yet they have much in common. North
America is like hospice, with clear boundaries. Palliative care may be
more like Europe, which merges into Asia (which may be like “usual
care”). Where one stops and the other begins is mostly a political
decision, just like the separation of palliative vs. usual care.
End
of life care can be challenging, and the options may seem murky. In
order to find their way, patients, family members and physicians might
benefit from “GPS” systems, including helpful road side assistance to
help them navigate these complex health care decisions. Definitions and
primers are just the start of customizing this final journey.
James
Cooper is Clinical Professor of Medicine, Division of Geriatrics and
Palliative Care, George Washington University. He blogs on the Prepared Patient Forum.
