Most of us have an opinion about what constitutes good care for ourselves
and our loved ones at the end of life—and, despite American cultural
diversity, research shows that most of us have similar opinions. We
want to be as independent as possible and to have our values and preferences
respected. We also share common fears of suffering in pain, losing
control, being a burden to others, and being abandoned.
In the 1970s, when a rising number of terminally ill people were dying
alone in hospitals, these hopes and fears gave impetus to the adoption
of hospice care in the United States. The philosophy of hospice is that
everyone has the right to die free of pain and with dignity, and that
families should be supported in helping to make this possible. Hospice
programs are equipped to provide quality care to the dying and support
for their families and caregivers. Their services can be especially important
to women, who shoulder most of the burden of caregiving and often must
help an aging parent or other relative make arrangements.
The hospice movement has not grown as fast as one might expect, given
the seemingly universal appeal of its philosophy. Some of the barriers
are overt, such as the laws and policies that affect financing and delivery
of hospice care. Others are subtle, such as the attitudes of both patients
and doctors toward death and dying. A major impediment is lack of information.
When a cure is no longer possible, hospice care can enable patients
to maintain a good quality of life and to die with dignity. Symptoms
are managed so that the dying person can spend his or her last days alert
and comfortable, surrounded by loved ones. This kind of care is called “palliative,” meaning “comfort
giving,” as opposed to curative.
The distinctive feature of hospice care is the coordination of medical,
psychological, and spiritual support for both dying persons and their
families. By law, hospice programs must also provide bereavement counseling
for up to a year. The Medicare hospice benefit, which in many respects
sets a national standard, covers up to 13 months of bereavement counseling.
Most health insurers and hospices have adopted the Medicare eligibility
rules, which require certification from a physician that the patient
will not benefit from further curative treatment and has a life expectancy
of no more than six months if the illness runs its normal course. The
six-month rule, now fairly standard, works well enough for cancer, which
usually has a distinct terminal phase. The rule is harder to apply, and
hospice care more difficult to arrange, when the course of the illness
is less predictable and life expectancy is uncertain.
Nevertheless, it’s important to bring up the possibility for the
sake of both the patient and the family. Everyone needs time to discuss
the matter and perhaps consult physicians, insurers, and others before
deciding whether, when, and where to arrange for hospice care. End-of-life
matters are too weighty to put off until death is imminent. But, according
to the National Hospice and Palliative Care Organization, the average
length of hospice care in 2003 was barely three weeks. This figure is
significant, because short-term care means the patient and family have
less time to prepare for death.
Hospice care is covered by most private health insurers, health maintenance
organizations (HMOs), and other managed care plans—including Blue
Cross, Blue Choice HMO, the Department of Veterans Affairs, Medicare,
and Medicaid. Many hospice programs will provide care even for patients
who have insufficient or no insurance. Home-based hospice care usually
costs less than hospital or nursing care, of course, because it requires
less professional help and little high-tech equipment.
There are many reasons for choosing hospice care. It allows people to end
their lives as comfortably as possible, surrounded by family and friends.
Home-based hospice gives patients and their families a greater sense of
control than a hospital allows. And hospice places a much greater emphasis
on the spiritual and emotional aspects of dying. That’s why it has
become the choice of increasing numbers of the dying and their families.
November 2005 Update
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