Dannion
Brinkley,
Chairman of the
Board, Compassion in Action / The Twilight Brigade
To the
White House
Commission on Complementary
and Alternative Medicine Policy
Washington, DC
- December 5, 2000
Introduction
It is a pleasure to be asked to
present to the White House Commission on Complementary and Alternative Medicine
Policy regarding access to and delivery of complementary and alternative
services, their use, effectiveness, and delivery systems. It has been nearly a
decade since many of us were asked to participate in those first town meetings
at the National Institutes of Health and the Chantilly meeting to begin
organizing the body of knowledge about complementary and alternative medicine
and set up research agendas.
I come before you today
representing four constituencies - Compassion in Action
and its 4,000 volunteers nationwide, the 24.8 million veterans of the United
States armed services, the hundreds of thousands of hospice patients and
programs nationwide, and every human being who has ever looked to a treatment or
product outside the mainstream of medicine in a quest for better health.
Twenty-five years ago, my life was
forever changed by a rather dramatic health crisis - being struck by lightning
while talking on the telephone during a thunderstorm and being clinically dead
for twenty-eight minutes. Since that auspicious day, I have learned numerous
times that facing that thing we call death is not nearly as frightening as the
miracles of modern medicine that the terminally ill are subjected to every day.
As a result of that experience, I have been forced to integrate the best of
allopathic medicine with the best of complementary and alternative therapies.
Because of contusions to the spine from the lightning injury, I suffer
tremendous back pain at times and find relief with chiropractic treatments.
While semi-paralyzed, I learned to use guided imagery and visualization to
utilize the mind-body connection and aid my body's healing process.
Three years ago, I learned that prayer and
intentionality - or willful intent - can play an important role. As I lay in a
hospital intensive care unit trying to manage the excruciating pain that comes
with brain aneurysms, thousands of individuals around the globe held prayer
vigils on my behalf. I had only an eight- percent chance of walking out of that
hospital. While I was not aware that I was being prayed for, I was aware of a
shift in my recovery. I know that through the willful intent of those thousands
of individuals praying for me, I required a less dangerous brain operation, I
recovered and have been able to continue my life's mission.
Over the years, I have also
learned the importance of aromatherapy, color therapy, music and sound therapy,
touch therapy, qi gong, massage, acupuncture, meditation, dietary supplements,
nutrition and stress management.
Twenty-three years ago, I became a
hospice and nursing home volunteer and over the years as an author
and motivational speaker, I have been credited with recruiting over 20,000
hospice volunteers. In 1997, Compassion in Action was formed as a national
non-profit organization to recruit and train hospice volunteers to provide
compassionate care for the dying and to dying veterans in particular.
Compassion in Action's mission also includes a commitment to raise society's
consciousness about the needs of the dying through community and professional
education. We named our team of volunteers the "Twilight Brigade" because they
are trained, disciplined troops who aid those in the twilight of life and
through the long nights when the terminally ill are most often alone.
Background
During the twentieth century, our
society took the process of dying - as natural a phase of life as birth - and
turned it into a medical aberration. Doctor's were trained to think of death as
a failure and to fight it at all costs. The terminally ill were hospitalized,
hooked up to machinery, subjected to one (expensive) "life-saving" measure after
another. Most American's don't fear death nearly as much as they fear becoming
helpless, suffering with untreated pain, and dying alone. A Gallup poll
recently reported that ninety percent of Americans if faced with a terminal
illness would prefer to be cared for and die in their home rather than in a cold
and clinical hospital setting.
Sadly enough, doctors on average
don't make a referral to hospice until three weeks before death. Studies have
shown that patients' advance directives are often overlooked or ignored.
Patients and their families oftentimes do not benefit from the full hospice
approach as a result. I have attached a November 28, New York Times
article that talks about prognosis
which is a vital component of insuring a timely referral to hospice care. In
November, the Journal of the American Medical Association devoted an
entire issue to end of life care.
I have attached several of those articles for your information as well.
As we finished out the twentieth
century, the hospice movement grew. Thanks to the work of my dear friend
Elizabeth Kübler-Ross and others, the world began turning to hospice. The
hospice approach to care is different from the hierarchical western approach to
disease treatment. In hospice there is a team approach with the patient rather
than the doctor in charge. The doctor and nurse are joined by a spiritual
advisor - typically a chaplain, a social worker, other needed health care
professionals, a home health aide, the caregiver and a volunteer to work in an
integrated fashion to provide high quality, compassionate care. That care is
focused on comfort and healing - oftentimes spiritual and relationship healing
rather than cure and recovery from physical disease.
Hospice care is for anyone with a
terminal illness. In the past, that has been defined as anyone who has a
prognosis of six months or less to live. In actuality, hospice care is comfort
care given to those for whom a cure of the physical disease is not likely and
that the patient no longer wants to pursue aggressive "curative" therapies.
There is now an understanding that oftentimes when hospice care is provided that
a terminally ill patient will rally and live longer than the expected six
months. During Congressional testimony last year, the Health Care Financing
Administration clarified that policy allows for hospice patients to receive
hospice benefits longer than six months when necessary.
Appropriate and oftentimes
aggressive pain management is a high priority in hospice care. Pain becomes the
fifth vital sign and is also an area that complementary therapies can be
effective. Also important are providing respite care for caregivers and making
grief counseling available for up to a year after a loved ones' passing. At a
Congressional hearing in October 1999 on Improving Care at the End of Life with
Complementary Medicine, Dr. Patricia Grady of the National Institute of Nursing
Research testified that music therapy had been shown through scientific research
to be an effective complementary therapy in pain management. I would agree that
music therapy plays a valuable role in the hospice environment. Unfortunately,
the value of art and music therapy is under-appreciated. Art and Music Therapy
programs are often viewed by hospital administration as expendable and are
typically the first things to go with budget cuts.
The trained volunteer is a key
component of the hospice team. It is often a volunteer that will notice a
patient is suffering untreated or unresolved pain and will notify a nurse. The
volunteer is oftentimes the one sitting at the bedside holding a hand as the
terminally ill do a life review. In veteran's facilities, there is often no
family or friend to visit and without the Twilight Brigade, many of our
country's heroes would spend their last days in bed alone with a TV blaring.
Being a hospice volunteer is also a rewarding experience. Many of our
volunteers report back about personal growth experiences that come as a result
of serving the dying and their families.
While nurses are the cornerstone
of medicine - the person a patient gets the most individualized attention from -
VA nursing staff are often stretched too far, given too many patients to attend
to and thus cannot give the care they would like to give. Care that begins with
more quality time with each patient. This care will only come if we increase
nursing staff exponentially in our VA facilities. It is often nurses who get
additional training in complementary modality such as touch therapy so that they
can bring comfort to patients. Research is showing that with the use of touch
therapy, a patient's anxiety can be lowered and they will rest easier.
About the same time hospice
started growing in the United States, many individuals began looking for a more
holistic approach to medicine and healing than western "allopathic" medicine
offered. Eisenberg and others have shown that over forty percent of Americans
now include some form of complementary and alternative medicine (CAM) in their
lives.
Compassion in Action has developed
a partnership with the Veterans Administration to provide trained volunteers to
serve terminally ill veterans. Did you know that one in four adult men in the
United States is a veteran? Their median age is 58 years. As of July 1, 1999,
there was an estimated 24.8
million veterans in the United States and Puerto Rico.
These men and women deserve the opportunity to access CAM therapies through
their VA healthcare system.
I am proud to have served in the United States Marine
Corp and am part of the largest segment of veterans - the 8.1 million
Vietnam-era veterans (one-third of the veteran population). Many veterans of
my age group are dealing with post-traumatic stress disorder, substance abuse
issues, agent orange-related cancers, diabetes, and heart disease. There are
many CAM therapies that would greatly benefit this veteran population if made
available at VA facilities.
The second largest population of veterans in the United
States are the ones that Compassion in Action spends the majority of its times
serving - the 5.9 million World War II veterans. Currently an estimated 32,000
World War II veterans die each month. That number is estimated to grow to over
40,000 each month next year. Over the next ten years, that number will continue
to grow steadily and the financial burden attached to our current method of
carrying for terminally ill patients will collapse our medical system. We must
find more effective and less expensive treatment options for our aging veteran
population. Two years ago, the Health Care Financing Administration predicted
that our health care costs were going to double by 2007, to over 2.7 trillion
dollars. I firmly believe that complementary and alternative medicine holds the
key to saving our health care system (and or economy) from collapse.
Complementary and Alternative Medicine Delivery
As we look to determine what complementary and
alternative medicine (CAM) practices and products will be available and under
what circumstances, it is important to remember that there are really four ways
that CAM practices are delivered:
1.
CAM practices
are delivered by "allopathic" (credentialed/licensed) health care professionals
such as medical doctors, nurses, and allied health professionals.
These health care professions are already accepted in our health care system and
their services are typically provided at Government facilities
or reimbursed by insurance programs. A growing number of these professionals
are expanding their capacity to serve their patients with CAM therapies. Each
state has its own set of rules for regulating the practice of medicine. In some
states, physicians are given the freedom to use their professional judgement in
offering treatments outside the mainstream and in other states, physicians who
offer or recommend CAM have been under attack from their state licensing boards
and the Food and Drug Administration. I believe it is important for the
Commission to gather the information on how each state is regulating physicians
and other conventional medical professionals and their use of CAM.
2.
CAM practices
delivered by regulated (credentialed/licensed) CAM professionals such as massage
therapists, acupuncturists, chiropractors, and naturopathic doctors.
These professionals are required to meet certain training qualifications and
pass a certification exam specific to their profession. Chiropractors have the
right to practice in all fifty states, the District of Columbia, and all U.S.
territories. They can even be considered a primary care physician. However,
chiropractic treatment is not always a covered service in insurance programs.
Nor are chiropractors readily available at Government health facilities.
Massage, acupuncture, and naturopathy are available in some but not all states.
These practices, more often than not, are only available to those who can pay
out-of-pocket. These CAM practitioners are generally not available at
Government health facilities. I believe it is important for the Commission to
make recommendations to include these practitioners in Government programs.
3.
CAM practices
delivered by CAM professionals who may or may not have a uniform certification
process but are not regulated as a profession at the state level.
This would include herbalists, reiki and other "energy" practitioners, and
practitioners of traditional systems of medicine who may not otherwise licensed
such as Tibetan medicine practitioners. The professions are as yet, never
reimbursed by insurance, and not available through Government health facilities.
I believe that many of these therapies show promise, especially when comfort and
not cure is the motive. The Commission will need to address when and how these
professionals can be accessed.
4.
CAM practices
that are self-administered or administered by a family member or other
"non-professional". This could include dietary approaches and lifestyle changes that a
family or individual adopts for health reasons, the use of dietary supplements,
prayer and meditation, breath work, journaling, aromatherapy, yoga, homeopathy,
Bach flower remedies, and folk remedies. These products and practices are not
covered under insurance programs and not typically offered in Government health
facilities. However, many Americans attend training classes and adopt CAM
practices on their own either because of a dramatic life event, because of a
desire to stay healthy longer and to be in charge of their own health. Making
use of these aspects of CAM will provide powerful opportunity to improve the
health status of all Americans while reducing health care expenditures.
Recommendations
Each of these four areas will need to be addressed by the
Commission. They each present their own challenges and opportunities for
integrating into our health care model. It is important not to exclude
considerations for recommendations for professions that are not regulated at
this time.
It may be appropriate for the Commission to recommend
that unregulated professions organize themselves through their professional
associations, set national standards, and develop a certification program at the
national level if one does not currently exist.
If the Commission has not already done so, I would
recommend that each of the CAM organizations be contacted and invited to
participate in this process, either through presentations at meetings such as
this, or through written responses to a set of relevant questions.
It will be advantageous to educate our doctors and nurses
in CAM modalities and give them the freedom to offer these services to
patients. However, it will not be appropriate to bring these practices into our
health care system and exclude the CAM practitioners. The issue of MD
acupuncturists and licensed acupuncturists is a good example of how this
presents a challenge to the health care system. It is important for our health
care system not to prejudice against a provider just because they do not have
"MD" behind their name.
In may be advantageous to extract a particular CAM
treatment out of a traditional healing system for a particular use - such as
acupuncture to treat chemotherapy nausea - but it will not always be
advantageous to access a CAM treatment that way. It is important to respect the
culture, language, and traditions of other systems of medicine - and the rights
of individuals to opt out of allopathy and to turn to another system of medicine
both as a medical professional and a patient. It is also important to respect
the right of a patient to make a determination whether a CAM treatment is to be
used as a complementary treatment or an alternative treatment.
Much of the Government focus to date has been on the
development of the CAM research portfolio at the National Institutes of Health.
It is important to recognize that other agencies can and should play a role as
well. The VA conducted a survey two years ago and learned that some CAM
treatments were available in some locations. That survey and its
recommendations need to be reviewed by this Commission. Recommendations from
the Commission should be made to the VA and to all agencies within the
Government regarding CAM. A recommendation to the VA to develop CAM programs at
every VA center should be considered. A recommendation to HCFA regarding
inclusion of payment of CAM treatments in the hospice environment should be
considered as well.
The Health Care Financing Administration has a
demonstration project in the Ornish Lifestyle Modification program for heart
disease. This scientifically validated process has been shown to reverse heart
disease - something that has not happened anywhere else in medicine. The Ornish
program is safe, it is effective and it will save over $30,000 for every cardiac
patient that is able to avoid by-pass surgery. This type of demonstration
project needs to established for other programs and treatments as well.
The Department of Defense also has a demonstration
project with the Ornish program as well as a chiropractic demonstration
project. Both have been well received and should be encouraged and expanded.
Other agencies have been involved in CAM issues and
should also be encouraged to expand according to their specific mission. These
include the Bureau of Primary Health Care, the Substance Abuse and Mental Health
Administration, the Centers for Disease Control and Prevention, and the Agency
for Health Care Policy Research.
It is important to remember that much of this CAM
activity has happened as a result of congressional leadership. It is important
to include members of the House or Representatives and the Senate as well as
their staff throughout this process.
Since they are licensed nationwide, chiropractors should
be a part of every Federal health program including the Public Health Service,
Department of Defense, the Federal Employees Health Benefits, and Veterans
Administration.
In states where they are regulated, massage therapists,
acupuncturists, and naturopathic doctors should be integrated into Federal
facilities and the Federal Employees Health Benefits Package.
Sadly enough, it is a fact of life that if insurance,
including Medicare and Medicaid, does not cover a service; many Americans will
not be able to access the service. It is often the individuals who can least
afford an out-of-pocket medical expense that would benefit the most from access
to CAM. Who are these people? They are the elderly, the indigent, and the
working poor. Our Government has developed numerous programs to make health
care available and will gladly pay for high-cost medical treatments, but does
next to nothing to offer prevention services, nutritional counseling, or
stress-management training.
It is important to recognize that physicians need more
training in the things that are going to make the most difference in a patient's
overall long-term health. We know that 85 percent of disease is lifestyle
related; yet most medical schools only provide cursory training in nutrition.
Doctors today are trained to be technicians, when what patients often want is
good communicators with a little compassion.
We also need to focus prevention training on future
generations. Children today get very little training in nutrition and healthy
life styles. The average school lunch looks like a meal at a fast food
restaurant. Physical education class time has been drastically reduced and
children more sedentary as a result. The Commission should consider making
recommendations to the Department of Education about elementary and secondary
education opportunities.
One of the pieces of evidence missing in all of this is
the cost-savings data. If these treatments help, if a CAM therapy is effective,
does it save money? Will it be cost-effective to make massage therapy
accessible in Government-funded and insurance programs? Will we lower the use
of anxiety medications, muscle relaxants, or other stress-related medical
expenses? No one knows for sure, because to my knowledge, the question has not
been addressed by any Government agency?
You can ask the same question about any other CAM
profession or treatment. A gathering of both the success-rates of treatments
for specific conditions and their related expenses needs to be conducted and
analyzed. Once done, I think you will find that we can lower health care costs
dramatically while improving the health of the nation. I would suggest that the
Commission make appropriate recommendations regarding the gathering of
cost-saving data.
The term mind-body medicine has become readily acceptable
in medical and Government circles, yet many of the practices that go along with
this concept are not yet available through insurance programs or at Government
facilities. Biofeedback is one example of a very valuable technique that
remains available mostly to those who can pay for it out of pocket.
Some of the areas that shown the most promise are the areas that the Government
has given the least amount of attention to - the areas of spirituality,
consciousness, and energy medicine.
There are
numerous experts that this Commission should include in their deliberations.
They include, Dr. Beverly Rubik; Dr. Larry Dossey and Barbara Dossey, RN; Dr.
Fred Thaled, Michael Cohen, Dr. Len Wisneski, Beth Clay, Dr. Andrew Parfitt, Dr.
Kenneth Pelletier, all of the NIH alternative medicine grantees, Dr. David
Aldridge, Dr. Deepak Chopra, and the Directors of CAM hospital-based centers.
As you look at these areas, keep in mind that we are a
country founded on a premise of freedom - our veterans fought and were willing
to shed their blood and die to preserve that freedom. A thread that runs
through the CAM movement is the desire for medical freedom. The Commission will
need to address this issue as well.
I
want to take a moment to thank the staff of the White House Commission. A
special thank you to Dr. Stephen Groft - the Dream Weaver. He was asked to take
on the task of Directing the Commission very late into the development phase and
has done a tremendous job of pulling things together and getting it off the
ground. With his history as the Original Acting Director of the then "Office of
Unconventional Medical Practices" which became the Office of Alternative
Medicine, and his long history bringing the rare disease community together, I
am sure he with the leadership of Dr. James Gordon's leadership as Chairman,
this Commission will be successful.
The
creation of a non-profit foundation that has gone from 4 members to 4,000 in
less than three years was not something I have done by myself. I have been
fortunate to have a team of courageous and dedicated volunteers including Cheryl
Birch, Ronnie Mound, Cindy Tessmer, Marti Coblentz, Valerie Vickers, and many,
many more. Many of Compassion in Action’s volunteers are health care
professionals as well. Many have expertise in CAM modalities. Many of our
volunteers are also CAM consumers. Compassion in Action stands ready to work
with the VA and to expand programs in complementary and alternative medicine as
well as to offer professional education.
I ask that
I be allowed to submit to the Commission in the near future a compendium of
research articles that detail CAM treatments that can be used to improve end of
life care.
Thank you.
Dannion Brinkley
Attachments
Compassion
in Action Information
New York
Time Article of November 28, 2000
HCFA
October 19, 1999 Testimony Before the Government Reform Committee
JAMA
Articles
Information to Follow
Compendium
of CAM research articles relevant to improving end of life care.
Kolata Gina, A CONVERSATION WITH / Nicholas Christakis, A Doctor With a
Cause: 'What's My Prognosis?' NY Times, November 28, 2000
