Chairman Burton, Congressman Waxman, distinguished Committee
members, thank you for inviting us to discuss the importance of
hospice care and other end-of-life issues. The programs we
administer provide care to more than 70 million people in the
United States. We are committed to ensuring that, at the end of
life, they receive appropriate care tailored to their own needs
and that they understand their rights and options.
Medicare and most state Medicaid programs cover hospice services
for terminally ill beneficiaries. Hospices provide comfort,
counseling and relief from pain, rather than curative care.
Hospice care brings important extra sensitivity, a focus on
patient and family, and a special form of care to the dying.
Medical, psychosocial, and spiritual needs are addressed by a
specially qualified interdisciplinary team, with an emphasis on
keeping the patient at home with family and friends as long as
possible.
Medicare’s hospice benefit is designed to give hospices
the greatest latitude in meeting patients’ end-of-life care
needs. The care provided includes traditional services, such as
nursing care and drugs to control pain, as well as social
services and homemaker assistance. And, at the discretion of each
hospice and patient, it can include complementary treatments such
as acupuncture and massage therapy.
Medicare and Medicaid also require hospitals to ask all patients
upon admission about advanced directives, such as living wills,
which can help ensure that patient preferences regarding
end-of-life care are heeded. And we are taking other steps to
conduct research on end-of-life and hospice issues, help hospices
improve the quality of care they provide, and assist physicians
in addressing end-of-life issues.
The Balanced Budget Act of 1997 made important changes to
Medicare’s hospice benefit. These changes ensure that
patients whose prognosis improves or who choose to resume
curative care can leave hospice and return at a later date. They
also will provide us with information about how hospices are
using payments they receive and a better understanding of which
services are most important to hospice patients, and help us
ensure that payment levels are appropriate.
BACKGROUND
Hospice care was added as a benefit under the Medicare program
in 1983 and under Medicaid in 1985. The number of beneficiaries
electing hospice care and the number of agencies offering
services have grown steadily ever since. In 1998, 420,824
Medicare beneficiaries received more than $2 billion in hospice
care services from more than two thousands hospice agencies
across the country, with an average length of stay of 48 days.
Hospice care is covered under the Medicare Hospital Insurance
program and is available to all beneficiaries enrolled in
Medicare Part A. To be eligible, their physician and the hospice
medical director must certify that they are terminally ill, with
approximately six months or less to live if their illness runs
its normal course. The beneficiary must sign a statement
indicating that they understand that they are choosing hospice
care instead of routine, curative Medicare covered benefits for
their terminal illness. Their physician must reaffirm the
prognosis at 90 days, 180 days, and every 60 days thereafter.
Beneficiaries can receive hospice services wherever they reside,
be it at home, a nursing home, a hospital, or other facility or
setting where the patient resides. Once in hospice, they also
continue to have Medicare coverage for treatment of other
problems not related to their terminal illness from either their
own physician, the hospice physician, or their Medicare+Choice
plan if they are enrolled in one.
Services that hospice agencies routinely provide include:
Physician services (on-call 24 hours a day, 7 days a week);
Nursing care (on-call 24 hours a day, 7 days a week); Physical,
speech and occupational therapy; Medical social worker services;
Medical supplies (such as bandages and catheters); Drugs for
symptom control and pain relief; Medical equipment (such as
wheelchairs or walkers); Short-term care in the hospital,
including both respite care and procedures necessary for pain
control and symptom management; Home health aide and homemaker
services; Continuous home care of eight hours or more per day
during a period of crisis as needed so that the patient can
remain in their home; Dietary counseling; Counseling to help the
hospice patient and their family with grief and loss; and Any
other item or service for which payment may otherwise be paid
under Medicare.
Additional services to ease pain and provide comfort may also be
provided at the discretion of each hospice and patient. This can
include, for example, alternative treatments such as massage
therapy and acupuncture. We believe that the hospice is in the
best position to determine what care is appropriate to meet the
goal of alleviating pain and providing comfort for each
individual patient. We understand that hospices do explore and
try new and complementary treatment modalities in a continuing
effort to improve the care of the dying, and we encourage these
efforts.
EDUCATION & TRAINING
Education and training are critically important to the hospice
program. Beneficiaries and their families need to know that these
services exist and how to use them. Physicians need to know when
and how to determine whether to recommend hospice care to an
individual patient, as well as what criteria to consider when
certifying a patient’s eligibility. Therapists and other
ancillary providers need to understand the special sensitivities
required in treating hospice patients. Hospice volunteers need to
know how to provide the assistance and empathy that are the
hallmarks of hospice care. And agency surveyors who inspect
hospices to ensure compliance with health and safety regulations
need to understand the essential differences between hospices and
other kinds of health care providers.
For beneficiaries and their families, we have a brochure that
describes in plain English how the hospice benefit works, what
their rights and obligations are under the benefit, and how to
contact national and state hospice organizations. This brochure
is available on our www.medicare.gov website. Hospice information
and references are also included in the Medicare & You
handbook that is mailed to all 39 million Medicare beneficiaries
each year.
For physicians, we have worked with the National Hospice
Organization as it developed guidelines on how to determine
hospice eligibility for patients with an illness other than
cancer that can make prognosis more uncertain. We have
distributed these guidelines to physicians through our
contractors who process hospice claims.
These guidelines are particularly important in addressing
concerns about potential misuse of the hospice benefit. These
concerns resulted from identification by the HHS Inspector
General of isolated but egregious cases in which unscrupulous
hospice providers had billed Medicare, for sometimes several
years, for services to beneficiaries who were not terminally ill.
Terminal disease prognosis is not an exact science, and many
legitimate hospice patients live longer than six months.
Therefore, we issued a bulletin for hospice providers in 1995
stressing that it is essential for physicians and hospices to
document the clinical factors that lead them to the six-month
prognosis. This bulletin also suggested more frequent review of a
patient’s condition in cases where the prognosis is less
certain. The Inspector General also has issued compliance
guidelines to help hospices design programs to avoid improper
claims.
We have also provided special training to speech, physical, and
occupational therapists, and other caregivers, on how to best
provide care and sensitivity when working with hospice patients.
And for hospice volunteers, we have worked with experts to
provide training on how to help hospice patients with everyday
tasks such as shopping, bathing and dressing. And for state
surveyors who inspect hospices for compliance with health and
safety regulations, we have conducted special training sessions,
as well. For example, one such session in 1997 included a
presentation on effective symptom control, quality care for the
terminally ill, and quality of life indicators that surveyors
need to take into account by Ira Byock, M.D., who is also
testifying at today’s hearing.
ADVANCED DIRECTIVES
In addition to the hospice benefit, it is important for
beneficiaries to know how advanced directives, such as living
wills, proxy appointments, and durable power of attorney, can
help ensure that they get the kind of end-of-life care they
prefer. Living wills specify individuals’ desired medical
decisions in case they are incapacitated and cannot speak for
themselves. Proxy appointments and durable power of attorney
attestations designate someone else to make medical decisions in
case an individual becomes incapacitated.
Individuals have the right to elect or decline to complete an
advance directive. However, the Patient Self Determination Act of
1990 mandates that all institutions receiving Medicare and
Medicaid funding inform patients of their right to accept or
refuse medical treatment through an advance directive. And, the
Balanced Budget Act requires that the advance directive be placed
in a prominent place within the individual's medical record.
We are taking additional steps to help improve the quality of
end-of-life care. For example, we are asking Medicare’s
physician-led Peer Review Organizations (PROs) to address
end-of-life issues. PROs hold state-level contracts with Medicare
across the country to help promote quality care. Under new
contracts this year, they can undertake quality improvement
projects focused on pain management in end-of-life care. In such
projects, they would try to improve ways of controlling pain,
providing comfort to patients, evaluating patient and family
perspectives on quality of care, and measuring pain management.
Medicare’s Office of Clinical Standards and Quality also
is providing technical assistance to hospice organizations in
developing ways to measure the quality of care provided in
hospices. These measures will help identify areas where
improvement can be made and then monitor that improvement over
time.
BALANCED BUDGET ACT CHANGES
The Balanced Budget Act of 1997 (BBA) made important changes to
Medicare’s hospice benefit. One of these changes helps
ensure that patients whose prognosis improves or who choose to
resume curative care can leave hospice and return at a later
date. Before, if someone was discharged after being in a hospice
for more than seven months (210 days) they were banned from ever
getting hospice coverage again. A provision included in the BBA
allows such patients to be readmitted with full hospice coverage
when appropriate. This should end concerns among some providers
that discharging patients from hospice care could make them
ineligible for the benefit if they need it later.
The BBA also included a requirement that hospices submit data on
their costs to the HHS Secretary for each fiscal year beginning
after October 1, 1998. This information will help us to better
evaluate the adequacy of Medicare hospice reimbursement rates.
Hospice rates were originally set based on costs incurred in a
demonstration project that began in 1980. The rates were adjusted
several times by Congress and, since fiscal 1993, have been
statutorily set at the previous years rates plus an adjustment
for inflation. Hospice agencies are paid a set prospective rate
based on whether they are providing routine hospice care in the
patient’s home, continuous care in the patient’s
home, respite care in the hospital, or general care in the
hospital. (Medicare has a specific palliative care billing code
for hospice and other patients admitted to a hospital for
non-curative care.)
We look forward to the more objective assessment of payment
rates that hospice cost data can provide. However, in order to
allow time for providers to prepare for this new requirement, we
have delayed implementation. Hospice agencies must submit cost
reports starting in April 2000 for fiscal years beginning on or
after April 1, 1999.
Other BBA provisions also helped to strengthen the hospice
benefit, for example by:
waiving some ancillary staff requirements for rural agencies
that can demonstrate that they have been unable to recruit
specific personnel;
allowing agencies to contract with physicians rather than have
them as employees;
protecting beneficiaries from liability when hospice claims are
denied because the patient was not terminally ill; and
protecting agencies from liability when hospice claims are
denied because the patient was not terminally ill, as long as the
hospice did not and could not reasonably have been expected to
know that the beneficiary was ineligible for coverage.
CONCLUSION
We are committed to ensuring that beneficiaries receive
appropriate care at the end of life that is tailored to their own
needs and that they understand their rights and options. The BBA
has helped to strengthen both the hospice benefit and the advance
directive requirements. We look forward to continuing to work
with provider and beneficiary advocacy groups to further advance
end-of-life care. I thank you for holding this hearing, and I am
happy to answer your questions.
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THE TEXT ABOVE IS AN EXACT COPY OF THE TESTIMONY OF HCFA
REPRESENTATIVE KATHLEEN A. BUTO WHICH WAS POSTED AT THE FOLLOWING
WEBSITE: http://www.hhs.gov/progorg/asl/testify/t991019a.html
provided here for your information.
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