Psychology, Public Policy, and Law In the public domain

2000, Vol. 6, No. 2, 575-581 DOI: 10.1037//1076-8971.6.2.575

STEPS TO IMPROVE QUALITY OF LIFE
FOR PEOPLE WHO ARE DYING
Ron Wyden
United States Senator
Congress has largely ignored the public health crisis of pain and symptom man-
agement in the United States. However, the state of Oregon has taken several steps
to improve quality of life for people who are dying. The author has also worked to
improve the care provided to the terminally ill by introducing the Conquering Pain
Act, by asking the General Accounting Office to explore why people do not receive
their full hospice benefit, and by examining ways to respond to the mental health
issues associated with dying. The author believes that quality end-of-life care is both
a right and a responsibility and that it deserves immediate attention.
Congress has largely ignored the public health crisis of those living and dying
in pain.
1
In addition, with the exception of the Medicare hospice benefit, Congress
has not addressed how to improve care for the terminally ill. My concern is that
the heated congressional debate over physician-assisted suicide (PAS) can eclipse
other important elements of the discussion. Simply put, making PAS more
difficult does not treat the complex reasons leading individuals to seek that option.
I am personally opposed to PAS and twice voted against Oregon's Death with
Dignity Act. I did so because, having focused on health care policy for over 20
years as an advocate for the elderly, I have seen the health care system give short
shrift to those vulnerable people who cannot advocate for themselves. However,
I support my state's right to have held this vigorous debate and respect the choice
of the majority of Oregon voters through two legally held elections. The debate
held by Oregonians was not only groundbreaking but has led to crucial improve-
ment in end-of-life care that can serve as a model for the rest of the nation.
However, at both the state and federal levels of government, we must
recognize that our health care system does not provide the choices and responses
many patients and families need as they face a terminal illness. With that in mind,
I have introduced the Conquering Pain Act to assure patients that health care
professionals caring for them will have access to evidence-based guidelines to
ensure that their pain is treated, that patients are informed of their right to have
their pain managed, and that we take steps in federal health programs to assure
that pain is appropriately controlled. I hope this legislation also encourages the
linking of providers, families, and patients with the resources that already exist
within their states and regions to provide much needed support. No family should
Ron Wyden, United States Senate.
Correspondence concerning this article should be addressed to Press Office of Senator Ron
Wyden, 516 Hart Senate Office Building, Washington, DC 20510. Electronic mail may be sent to
press-office@wyden.senate.gov.
'One notable exception is the bill sponsored by Senators Rockefeller and Collins titled "The
Advance Planning and Compassionate Care Act of 1999" (S. 628).
575
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576 WYDEN
have to wait until "normal" business hours while their loved one suffers in
excruciating pain before he or she can get help.
I have also requested a General Accounting Office review of the Medicare
hospice benefit to determine what barriers exist to hospice care. When studies
show that nearly 90% of Americans do not know what hospice is, and statistics
show that the average length of stay for hospice patients is less than 1 month,
something is preventing people from accessing a health care service that could
potentially make a substantial contribution to the quality of life in their last days.
Oregon as a Leader in End-of-Life Care
There is a far more complex story to Oregon and the care of the terminally ill
than has been portrayed by detractors of Oregon's Death With Dignity Act.
Oregonians have done a tremendous job of improving care for the terminally ill.
For example, 90% of people surveyed would prefer to die at home or in a
home-like setting if facing a life-threatening illness.
2
My home state has the
lowest rate of in-hospital deaths in the United Statesless than one third of the
approximately 30,000 people who die each year in Oregon die in hospitals.
3
In
contrast, the national average for in-hospital deaths is over 50%. In addition,
Oregon has the highest rate of deaths at home.
4
Oregon's commitment to pain management is unsurpassed. In 1995, Oregon's
Intractable Pain Act was passed, setting specific guidelines for the prescription of
pain medication, freeing physicians from the fear that they might be investigated
for overprescribing. Use of morphine in Oregon has tripled since 1995. Oregon
has consistently been one of the top 10 states in the country for morphine use and
currently leads the nation with a rate almost double the national average.
5
Oregon
also leads the nation by being the only state to discipline a physician for the
undertreatment of pain. Although there is room for improvement, Oregon can
serve as a national model in its care for people who are terminally ill and in pain.
As Ann Jackson, Executive Director of the Oregon Hospice Association, has
outlined elsewhere in this special issue,
6
Oregon's hospice providers have been at
the forefront of providing quality end-of-life care to the dying and their loved
ones. Oregon is among the top three states for hospice use; approximately 30% of
Oregonians who died were in hospices in 1997 (the national rate was less than
2
Gallup Organization, Knowledge and Attitudes Related to Hospice Care. Survey conducted for
National Hospice Organization (1996, Alexandria, VA).
3
Susan W. Tolle, Anne G. Rosenfeld, Virginia P. Tilden, & Yon Park, Oregon's Low
In-Hospital Death Rates: What Determines Where People Die and Satisfaction With Decisions on
Place of Death? 130 ANN. INTERN. MED. 681-5 (1999).
4
Jeri Spann & Myra Christopher, Using Qualitative and Quantitative Data to Shape Policy
Change, 1 STATE INITIATIVES IN END-OF-LIFE CARE, (June, 1998).
'Department of Justice, Drug Enforcement Administration. Morphine: Cumulative Consump-
tion in Grams per 100,000 Population (reporting period 1/01/1999 to 09/30/1999). Washing-
ton, DC.
6
Ann Jackson, Observations on the First Year: A Commentary, 6 PSYCHOL. PUB. POL'Y & LAW
322-330 (2000).
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QUALITY OF LIFE 577
20%).
7
If these trends hold, the Oregon rate will be nearly 40% by the end of
2000. In addition, in the Oregon Health Plan, comfort care has been firmly
established so high on the list of prioritized treatments that it is in the "perma-
nently untouchable range," meaning that adequate pain relief and hospice care
funding are fully covered now and for the foreseeable future. Further, in 1997, and
then again in 1999, The Task Force to Improve the Care of Terminally 111
Oregonians distributed a book titled The Final Months of Life: A Guide to Oregon
Resources to share information about resources for care of the terminally ill.
Oregon Health Sciences University (OHSU) also has made several contribu-
tions to improvements in care for the dying and has increased the amount of
training that students have on end-of-life issues. For example, the University
Hospital established pain as the "fifth vital sign," joining respiration, heart rate,
blood pressure, and temperature; made pain assessment and documentation rou-
tine practice; ensured that all patients receive ongoing pain ratings; and imple-
mented a new system to help medical personnel adjust medication levels based on
the patients' assessments oi" their own pain. They also posted a bill of rights for
cancer patients along with other educational materials to encourage patients to
request adequate pain control.
For training, the University instituted a new educational program on pain for
all medical disciplines, added a hospice rotation for medical students completing
the required community medicine rotation, and now requires incoming interns and
residents to role-play giving bad news to patients and families. Further, OHSU
developed self-study materials in four key areas of comfort care: communicating
effectively with dying patients, managing pain, controlling common symptoms,
and understanding the nature of suffering.
Oregon also has been at the forefront of implementing usable advance
directive laws. Since 1993. my state has had one of the most comprehensive
advance directive laws in the country, combining living wills with a broader and
clearer section on how others can be selected to make decisions for people unable
to express their own wishes. The 1993 statute spelled out for the first time the
elements of comfort care (including the right to pain relief through medication)
and provided for the withdrawal of tube-feeding and other forms of artificial life
support. As a demonstration of how this action made a good system even better,
consider the fact that, in 1990, Portland's rate of documenting advance care
directives in nursing home patient records was 69%, by far the highest of the cities
studied.
8
By 1997, this rate had risen to 91%.
9
In addition, the revolutionary "Physician Order for Life-Sustaining Treat-
ment" (POLST), put in place after the 1993 advance directive law was enacted,
7
Susan W. Tolle, Care of the Dying: Clinical and Financial Lessons From the Oregon
Experience, 128 ANN. INTERN. MED. 567-8 (1998).
8
Joan M. Teno, Kenneth J. Branco, Vincent Mor, Charles D. Phillips, Catherine Hawes, John
Morris, & Brant E. Fries, Changes in Advance Care Planning in Nursing Homes Before and After
the Patient Self-Determination Act: Report of a 10-State Survey, 45 J. AM. GERIATR. soc. 939-44
(1997).
9
Susan W. Tolle, Virginia P. Tilden, Christine A. Nelson, & Patrick M. Dunn, A Prospective
Study of the Efficacy of the Physician Order Form for Life-Sustaining Treatment 46 j. AM. GERIATR.
soc. 1097-102 (1998).
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578 WYDEN
was designed to make sure that seriously ill or injured patients' treatment wishes
were respected. Research reveals that for those who use the POLST form, less
than 5% of people's end-of-life treatment requests are not followed.
10
Of the
people who died and who had POLST forms, 63% had an order for opioids, which
is the highest rate investigators could identify for nursing home patients nation-
ally. Finally, research showed that the use of the POLST procedures promoted
additional comfort measures for nursing home residents and their families.
Oregon researchers have been examining how end-of-life decisions are made
so they can improve the information and care given, which will affect which
choices are selected. In an effort to help the medical system honor people's
values, the Program of Research on Ethics and End-of-Life Care developed a
study titled "Barriers to Improving Care of the Dying," which investigated patient
perceptions of problems. This study revealed that terminally ill patients in Oregon
were more likely than patients elsewhere to have their end-of-life wishes re-
spected, and family survivors reported a high degree of satisfaction with the care
of their loved ones.
11
Although a very large national research project reported in the Journal of the
American Medical Association in 1995
12
found that there is no correlation
between what a patient wants at the end of life and what he or she gets, this is not
the case in Oregon. Family members of two thirds of those who died in Oregon
reported the patient had an advance directive regarding life-sustaining treat-
ment.
13
In addition, over 90% of family members of patients who had an advance
directive in Oregon were satisfied with their relatives' end-of-life experience.
Only 5% of families interviewed for the Barriers study reported that "too much"
care was given to their relatives, and only 2% of families reported "too little" care
was given.
Given all of this, it is unfortunate that when people think of Oregon and
end-of-life care, all they can talk about is the Death With Dignity Act. Oregonians
have long been innovators in responding to the crisis of pain and suffering at the
end of life. Our service providers, researchers, and advocates have much to be
proud of for their accomplishments.
Conquering Pain Act
Building on the success of Oregon's programs, I introduced S.941the
"Conquering Pain Act"legislation designed to provide a comprehensive re-
sponse to the crisis of pain in the United States. It addressed pain management
without interfering with the ability of health professionals to provide care and
while respecting that states may define medical practice differently and that home
health systems may be organized differently. This bill was developed after
extensive consultations with experts from across the country. It had bipartisan
10
Tolle et al, supra note 9.
"Tolle et al., supra note 3.
12
SUPPORT Principal Investigators, A Controlled Trial to Improve Care for Seriously III
Hospitalized Patients: The Study to Understand Prognoses and Preferences for Outcomes and Risks
of Treatment (SUPPORT) 274 j. AM. MED. ASSOC. 1591-8 (1995).
13
Tolle et al., supra note 3.
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QUALITY OF LIFE 579
support in the Senate and had significant support in the healthcare community,
garnering endorsements from a wide variety of medical and patient organizations
and receiving praise in a recent article in the Journal of the American Medical
Association.
14
I believe the appropriate federal role is to highlight this critical issue and to
encourage a variety of solutions to the complexities surrounding pain manage-
ment. I want all health systems to treat pain as the "fifth vital sign." I am
particularly pleased that the Veterans Affairs health system is taking steps to
incorporate pain management into training and care guidelines.
I believe my bill is necessary because of some of the facts I discovered about
the state of pain and pain management in our country:
1. Chronic pain affects at least 50,000,000 Americans through some form
of persisting or recurring symptom;
2. Despite the best intentions of health care professionals, pain is often
undertreated because of inadequate training of physicians in pain man-
agement;
3. Pain is often left untreated or undertreated, especially among older
patients, African Americans, and children;
4. Between 40% and 50% of patients experience moderate to severe pain
at least half the time in their last days of life;
5. Between 70% and 80% of cancer patients experience significant pain
throughout the course of their illness;
6. Even with the best intentions of health care professionals, pain and
symptom management is often suboptimal because the health care
system has focused on cure of disease at the expense of management of
a patient's pain and symptoms; and
7. The technology and scientific basis to adequately manage most pain is
known.
As a result of these findings, my bill began with the premise that a coordinated
"federal effort is needed to improve access to high quality effective pain and
symptom management in order to assure the needs of chronic pain patients and
those who are terminally ill are met." In order to accomplish this goal, the bill had
five major parts. The first would direct development and posting of guidelines for
treatment of pain, educate patients on rights to have pain and other symptoms
effectively managed, include pain coverage in Medicare+Choice plans and fed-
eral health programs, and direct the Surgeon General to prepare a report on pain
and symptom management in the United States.
The second aspect focused on the development of family support networks in
pain and symptom management. The goal was for there to be centers to improve
access and quality of pain and symptom management for people in pain and
provide assistance to family members and caregivers.
The third area was a review of the ways in which Medicare policies may
14
David Orentlicher & Arthur Caplan, The Pain Relief Promotion Act of 1999: A Serious
Threat to Palliative Care 283 J. AM. MED. ASSOC. 255-8 (2000).
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580 WYDEN
impose barriers to the provision of proper pain and symptom control as well as a
similar survey of private insurance policies.
The fourth major focus was the establishment of an advisory committee on
pain and symptom management, along with an Institute of Medicine report on
controlled substance regulation and the use of pain medications, and a National
Institutes of Health conference on translating pain research into practice.
Finally, the bill's fifth element was the development of at least five demon-
stration projects to determine effective methods to measure the skill and knowl-
edge needed for effective pain and symptom management at the end of life.
I believe this bill would have a positive impact on the quality of care for
people experiencing chronic pain or pain at the end of life.
Hospice Use
The Medicare hospice benefit can contribute significantly to the quality of life
for people who are dying as well as those helping to care for them. The holistic
and interdisciplinary care that people receive should serve as a foundation for
other health programs, yet people do not take full advantage of the Medicare
benefit. Hospice providers have raised concerns about the impact of regulatory
actions that may make access to hospice difficult. As a result, I have asked the
U.S. General Accounting Office (GAO) to conduct an investigation of the bar-
riers, to both terminally ill individuals and hospice service providers, to people
receiving their full hospice entitlement. The GAO report was completed in
September 2000.
15
Mental Health Issues
Consistent with the Institute of Medicine's report on improving care at the end
of life, the focus of Federal efforts, including my own, toward improving the
quality of life of dying individuals has been on reducing pain and other distressing
symptoms. However, I am also aware that the dying and their loved ones may
experience significant psychological and social difficulties that can make the
dying process more difficult, increase the suffering experienced, and complicate
the grief and mourning after death has occurred.
I therefore believe that more attention needs to be paid to many of the
psychosocial issues that dying people and their loved ones face. Two issues that
need to be explored more thoroughly are (a) how to improve the detection and
treatment of distressing psychological problems (such as clinical depression and
anxiety) experienced by the terminally ill, elderly, or both; and (b) how to
alleviate concerns that can lead to requests for physician-assisted suicide, such as
loss of (or fears of losing) autonomy, control, and self-determination; perceptions
of experiencing an "undignified" dying process; and fears of "being a burden" on
loved ones.
To provide comprehensive, effective, quality end-of-life care to the terminally
ill, we must attend to the psychosocial aspects of the dying process. The Surgeon
15
U. S. General Accounting Office, Medicare: More Beneficiaries Use Hospice, But for Fewer
Days of Care. GAO/HEHS-00-182 (2000).
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QUALITY OF LIFE 581
General's report on mental health reminded us that mind, body, and environment
are all linked. To treat one aspect to the exclusion of others is to work in a
piecemeal as opposed to holistic fashion. In essence, we are robbing Peter to pay
Paul.
To fully address the psychosocial issues associated with the dying process, no
one legislative initiative will be enough. These issues must be incorporated into
a variety of both existing and future health policies. However, their complexity
should not be a reason to put them on the "back burner." To appropriately address
comprehensive pain and symptom management, we must incorporate them into
our overall thinking about mental health, quality of care, and health system
structures.
Conclusion
We all have an investment in improving the quality of care for those who are
dying. I have made it a legislative priority to address problems in the healthcare
system, and I am confident that positive changes can be made. By working
together, policy makers, researchers, and service providers can inform each other,
help people who are suffering, and, ultimately, improve the quality of life for
those who are dying. This is not an option or something to be put off for another
year. It is both our right and responsibility. Quality end-of-life care deserves our
immediate attention.
Received February 7, 2000
Revision received February 22, 2000
Accepted March 15, 2000
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