[Congressional Record Volume 143, Number 158 (Monday, November 10, 1997)]
[Extensions of Remarks]
[Pages E2318-E2319]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]


        THE ADVANCE PLANNING AND COMPASSIONATE CARE ACT OF 1997

                                 ______
                                 

                          HON. SANDER M. LEVIN

                              of michigan

                    in the house of representatives

                        Sunday, November 9, 1997

  Mr. LEVIN. Mr. Speaker, the Advance Planning and Compassionate Care 
Act of 1997 seeks to improve the medical care of individuals nearing 
the end of their lives so that they and their families can have 
confidence that this care respects their own desire for autonomy and 
dignity.
  The compassionate care bill builds on the Patient Self-Determination 
Act enacted in 1990. The Patient Self-Determination Act requires health 
care facilities to distribute information to patients regarding 
existing State laws on living wills, medical powers-of-attorney, and 
other advance directives, which enable individuals to document the type 
of care they would like to receive at the end of their lives. Since 
passage of that legislation, there has been an increase in the number 
of individuals who have an advance directive, but a recent Robert Wood 
Johnson study found that many people do not understand the importance 
of discussing their advance directives with family members and their 
health care provider. For example, while 20 percent of hospitalized 
patients had an advance directive, less than half of those patients had 
talked with any of their doctors about having a directive and only 
about one-third had their wishes documented in their medical record.
  The compassionate care bill takes another important step in raising 
public awareness of important end-of-life medical issues and improving 
the quality of the care individuals receive during this period.
  The bill improves the type and amount of information available to 
consumers by making sure that when a person enters a hospital, nursing 
home, or other health care facility, there is, when requested, a 
knowledgeable person available to discuss end of life care. This will 
facilitate good decisionmaking on medical care based on the patient's 
own needs and values. The bill requires that if a person has an advance 
directive it must be placed in a prominent part of the medical record 
where all the doctors and nurses can clearly see it. It also 
establishes a 24-hour hotline and information clearinghouse to provide 
consumers with information.
  The bill also ensures that an advance directive which is valid in one 
State will be honored in another State, as long as the contents of the 
advance directive do not conflict with the laws of the other State. In 
addition, the bill requires the Secretary of Health and Human Services 
to gather information and consult with experts on the possibility of a 
uniform advance directive for all Medicare and Medicaid

[[Page E2319]]

beneficiaries, regardless of where they live. A uniform advance 
directive would enable people to document the kind of care they wish to 
get at the end of their lives in a way that is easily recognizable and 
understood by everyone.
  The compassionate care bill also focuses on the need to improve end-
of-life care for Medicare beneficiaries. This bill will encourage 
seniors and families to have more open communication with health care 
providers concerning their preferences for end-of-life care. The bill 
also addresses the need to develop models of compassionate care and 
quality measures for medical care during this period.
  Currently, there are few standards available to assess the quality of 
care provided to Medicare beneficiaries at the end of their lives. The 
tremendous geographic variation in medical care that currently exists 
reinforces the notion that many people do not receive care driven by 
quality concerns, but rather by the availability of medical resources 
in the community and other factors not related to quality care.
  The bill requires the Secretary of Health and Human Services, in 
conjunction with the Health Care Financing Administration, National 
Institutes of Health, and the Agency for Health Care Policy and 
Research, to develop outcome standards and other measures to evaluate 
the quality of care provided to patients at the end of their lives.
  The only Medicare benefit aimed at improving end-of-life care for 
Medicare beneficiaries is hospice care, which only serves a small 
number of beneficiaries. In 1994, the Medicare hospice benefit was 
provided to 340,000 patients for the last few weeks of their lives. The 
hospice benefit is limited to beneficiaries who have a terminal illness 
with a life expectancy of 6 months or less. A review of studies done by 
an Institute of Medicine panel found that 40 to 80 percent of patients 
with a terminal illness were inadequately treated for pain ``despite 
the availability of effective pharmacological and other options for 
relieving pain.''
  The compassionate care bill provides funding for demonstration 
projects to develop new and innovative approaches to improving end-of-
life care provided to Medicare beneficiaries, in particular those 
individuals who do not qualify for, or select, hospice care. Also, it 
includes funding to evaluate existing pilot programs that are providing 
innovative approaches to end-of-life care.
  With a few exceptions, Medicare does not generally pay the cost of 
self-administered drugs prescribed for outpatient use. The only 
outpatient pain medications currently covered by Medicare are those 
that are administered by a portable pump. The pump is covered by 
Medicare as durable medical equipment, and the drugs associated with 
that pump are also covered. It is widely recognized among physicians 
treating patients with cancer and other life-threatening diseases that 
self-administered pain medications, including oral drugs and 
transdermal patches, offer alternatives that are equally effective at 
controlling pain, more comfortable for the patient, and much less 
costly than the pump. The bill requires Medicare coverage for self-
administered pain medications prescribed for outpatient use for 
patients with life-threatening disease and chronic pain.
  Instead of allowing these important end-of-life issues to be eclipsed 
by the debate over physician-assisted suicide, this legislation seeks 
to ensure that the medical care of patients at the end of their lives 
reflects their desires, increases comfort to the extent possible and is 
of the highest quality.

                          ____________________