presented before the
Congress of the United States House of Representatives
Committee on Government Reform
Ira R. Byock, MD
Research Professor of Philosophy, University of Montana
Director of the Palliative Care Service
Principal Investigator for the Missoula Demonstration Project
October 19, 1999
Mr. Chairman, members of the Committee, thank you for inviting me to give testimony about Improving Care at the End of Life with Complementary Medicine.
I am testifying today as an individual, not on behalf of any institution or organization. I’ve worked as a physician in hospice and palliative care since 1978. Over the years, I have written about the clinical and ethical aspects of end-of-life care including several articles opposing legalization of physician-assisted suicide. Some of these articles were cited in Amicus Briefs before the Supreme Court and one was cited by Justice Breyer in his concurring opinion.1
I have served on numerous committees (including the ethics committees) and task forces of national hospice and palliative care organizations, and as a past president of the Academy of Hospice and Palliative Medicine. I am Chief Medical Consultant for Partnership for Caring, a recently formed consumer organization that advocates for expanded access to and quality of end-of-life care.
Currently, I am a Research Professor in the Department of Philosophy at the University of Montana and faculty member of the Practical Ethics Center. My central research interest is in measuring quality of life and quality of care in advanced illness. I am principal investigator for the Missoula Demonstration Project, a long term community-based effort to improve the quality of end-of-life care to demonstrate what may be possible in communities across the nation. I direct a national grant and technical assistance program for The Robert Wood Johnson Foundation entitled, Promoting Excellence in End of Life Care. I maintain a consulting and counseling practice in palliative care in Missoula, Montana.
Crises at the end of life: How people die in America
There is no greater urgency facing American society than relieving the crisis that surrounds dying and care for the dying in our country. The Institute of Medicine’s report, Approaching Death, details the severity and pervasive nature of this crisis and concludes that there are serious deficiencies in medical education, health systems financing, attitudes and culture, and extensive errors of omission and commission in clinical practice.2
Dying patients and their families have known this for a long time. Even within otherwise excellent medical institutions, pain and physical suffering among dying Americans remains inadequately treated -- or even recognized. Up to 40% of dying patients receive grossly inadequate analgesia.3,4,5,6, Being of minority ethnicity, older than 80 or having dementia seriously increase the risk of having one’s pain untreated. In addition, most Americans still die in institutions, approximately 60% in hospitals and 20% to 25% in nursing homes. Patient’s preferences for care often are not honored, even when those choices are clearly conveyed.7 As if that is not bad enough, our health care system routinely pauperizes people and their families for being chronically ill and not dying quickly enough. In the large SUPPORT study, one third of families of dying patients reported losing most or all of the family’s major source of income; a third reported losing the family’s life savings, and 20% said that a family member had to either move or delay their own medical care, education, or career to meet the basic needs of their dying loved one.8
Cultural denial marks the confused and conflicted way our society approaches life’s end. Research and public opinion surveys demonstrate that it’s not death so much as dying that we fear. We are terrified of becoming ill; being physically dependent and in pain, and we worry most about becoming a burden to others.9 However, although we all say we want control over the way we live and the way our lives end, only a small percentage of us fill out a living will or durable power of attorney for health care.10 Many people with far advanced illness refuse to talk about cardiopulmonary resuscitation or mechanical ventilation with their doctors.11 Most people say they would prefer that their families make decisions for them if they become unable to speak for themselves,12 but only a few of these people tell their families what kind of care they would want.
The resulting fear, deep frustration and anger fuel the assisted suicide movement. Unable to face the stark reality of this end-of-life crisis, many people have embraced legalizing physician-assisted suicide as a “quick fix” that would allow us to avoid the dark and twisted roots of the crisis.
Crises at the end of life: Care for the aged
In the late 1940's our nation awakened to a silent epidemic of pediatric failure to thrive. Rene Spitz and his colleagues studied foundling homes in which orphans were cared for and found the mortality was alarmingly high and that profound developmental retardation was universal. Spitz determined that the key deficiency in the foundling homes was lack of human interaction. Babies would be fed, cleansed, swaddled and then lay untouched until it was the next time to be fed or have their diapers changed. He described the blank, listless stares of the infants.
The expressionless faces of too many elderly residents in America’s long term care facilities call these studies to mind. They, too, are often untouched unless they are wet or it is time to be fed. We have an epidemic of geriatric failure to thrive in America today. The public is only now beginning to grasp the nature of the problem and has yet to grasp it’s breadth. Nevertheless, the problem grows.
Today, aides in America’s home health and long term care industries are over worked and woefully underpaid. These remain entry level jobs, often at minimum wage and without health benefits. It is no wonder that the annualized turnover rate among these people is over 100%. This level of churning in the workforce inhibits meaningful training. And staffing is so short that aides rarely have time to spend simply listening to and visiting with elderly or ill residents.
The graying of America will accelerate dramatically between 2010 and 2030, as the baby boomers turn 65 years old. By the year 2030, 75 million Americans will be over 65, more than 20% of the population. In addition, there are 40 million Americans living now with chronic illness. Some estimates have that figure tripling by the middle of the 21st century.
While the graying of America accelerates, private caregiving resources within our individual networks of relatives and close friends are rapidly falling. Social trends, including geographic mobility, smaller families and families in which both adults are working have all contributed to this decline. Specifically, in 1970 there were 21 healthy adults representing potential caregivers for every person 85 years or older. In 2030 there will be just six such potential caregivers for the aged and just four by the middle of the next century.
Already families struggle to provide the sort of day to day, hour to hour, minute to minute care that we all want to give to our loved ones. I shudder to think of how hard it will be when it’s my generation’s turn to be cared for and our children’s turn to provide care.
Crises at the end of life: The burden of family care giving
Informal caregiving provided by relatives and close friends represents the unrecognized backbone of care in America. It is an enormous resource that can be supported and expanded as we grapple with the crisis of how badly Americans now die. A survey conducted in 1996 by the National Alliance for Caregiving and AARP found that nearly one quarter of households contained at least one caregiver.13 It is estimated that 25.8 million Americans spend an average of 18 hours per week caring for frail relatives. The economic impact of such care is extraordinary. It amounts to $196 billion dollars per year, more than formal home health care ($32 billion) and nursing home care ($83 billion) combined.14
Among the most poignant characteristics of the caregivers revealed by the NAC/AARP study, are the fact that 73% of caregivers are women. These women devote an average of 4.5 years to caregiving, but often as many as ten or more. And 15% of all caregivers and 31% of those providing the highest levels of care report significant physical and emotional stress.13
Among the difficulties faced by caregivers are the profound needs of those for whom they care. Recently, researchers at the National Institutes of Health published an important study in the New England Journal of Medicine of caregiving needs among nearly 1,000 terminally ill patients living at home.15 Eighty-seven percent of the people needed help with things like transportation (62%), homemaking services (55%), nursing care (29%) and personal care (26%).
These well documented facts must force American health policy makers and planners to expand the focus beyond the patient who is ill, including relatives and close friends who comprise a person’s “family” in our planning. These facts also compelling us to look beyond the medical care to the care given by family and to the support provided by the persons community.
In summary, the existing data have cast a light on a very disturbing picture of end-of-life care in America. But the same light also illuminates potential avenues for constructive change.
Hospice Could Be One Answer
Hospice is a bright spot in this otherwise gloomy landscape, a hopeful beacon that exemplifies what we can achieve. Excellent hospice programs have provided us with a best practice standard, a benchmark against which to gauge the outcomes of our clinical and policy efforts.
But hospice is wrestling with problems as well. Hospices now care for barely 20% of dying Americans and do so for rapidly diminishing periods of time. Numbers of admissions to hospice have actually increased to a current high of approximately 540,000 a year, but lengths of stay have plummeted to an all time low.16 In most programs, many patients receive care for barely two weeks. Intended to provide end of life care, hospices are now scrambling to provide brink of death care.
The Medicare eligibility criteria of a six-month life expectancy has strongly and adversely influenced the delivery of hospice care in America, severely limiting access to persons whose diseases, such as congestive heart failure, emphysema or senile dementias, are characterized by a prolonged or stuttering disease trajectory. Implementation by Medicare fiscal intermediaries of strict prognostic guidelines and rigid eligibility criteria for hospice admission threaten to further limit access to palliative care by patients with non-cancer diagnoses.17,18,19 In addition, these trends toward later referrals and shorter and shorter lengths of hospice care have substantially worsened under the influence of the Office of the Inspector General’s Operation Restore Trust.
Operation Restore Trust has sent a chill through American hospice programs. Hospice administrators and medical directors are worried -- with good reason -- that if they admit patients with slowly progressive, but ultimately terminal, illnesses who live beyond a few months, the program will be investigated for fraud for having admitted the patient. Death typically occurs suddenly and somewhat unpredictably for patients dying of chronic heart, lung or neurologic diseases, in the midst of slow, up and down decline. Thus, there is reluctance to admit them until they are obviously dying -- too late for them to realize most of the benefits of hospice care. Also, many hospice programs feel compelled to discharge patients who have become relatively stable with the comprehensive care hospice provides. Away from hospice care, these patients, decline more rapidly and die shortly thereafter. This is ethically and socially troubling. And unnecessary.
In addition to preventing patients from receiving good hospice care, the Medicare intermediaries’ Focal Medical Review procedures and Operation Restore Trust investigations entail huge administrative costs for hospice programs, often involve frozen payments and carry the risk of large recoupment. These events can threaten the very survival of a small or moderate sized community hospice program.
With this level of intense scrutiny one would expect that the problem being addressed in this tiny sector of our nation’s health care industry would be proportionately large. Yet, the Office of Inspector General’s own report concludes that instances of abuse in Medicare’s two billion dollar hospice program are uncommon.20
Is it necessary to be focusing such intense scrutiny on hospice programs? It is worth recalling that in the 1989 OBRA legislation, Congress added the unlimited fourth benefit period to the Medicare Hospice Benefit and the 6 month prognosis criteria was softened with statutory language adding, “if the disease runs it’s normal course.” Both actions were taken in recognition of the medical uncertainty regarding prognostication and in an attempt to address the reluctance of physicians to refer to hospice, or the tendency to refer too late.
Instances of fraud and abuse should be vigorously pursued and prosecuted. But oversight programs must be conducted with an awareness of the social context and potential unintended consequences of the actions. Government programs to uncover abuse and responsibly administer public funds must also preserve fair and equitable access to critically needed services by suffering people.
It doesn’t have to be this way
The most maddening aspect of the crisis in end-of-life care is that it need not exist. Dying is inherently hard, but it need not be horrible. We possess the medical expertise and more than enough resources to ensure that no one will die in physical agony. Pain and other distressing symptoms among dying persons can always be alleviated. Doctors and nurses may not be able to eliminate a person’s pain, but we are always are able to make it a little less severe, a bit more tolerable.
What we currently lack is a firm commitment on the part of the health care system to bring the power of medicine to bear in service of comfort and quality of life. Palliative care can be provided earlier in the course of a person’s illness. By managing symptoms, helping people address the difficult, but normal, psychosocial and spiritual concerns they may have and assisting with coordination of medical care and support services, including transportation and housekeeping, palliative care can dramatically improve the quality of life for the patient and his or her family.
Beyond assurance of relative comfort, people need not die alone. Many times the caring presence of another person can soothe a dying person’s anxiety and distress. But comfort and companionship are not all there is.
Over the years, patients and their families have taught me a surprising truth; this stage of life holds remarkable possibilities.21, 22 When people are relatively comfortable, know that they will not be abandoned or allowed to become too heavy a burden on their families, they frequently use the time to strengthen bonds and complete relationships with people they love and create moments of profound meaning.
People who are dying of a progressive illness have a chance to consider the question of what would be left undone if they died suddenly. In contrast to a sudden death, they can ask themselves what matters most and say and do many of the things that come in answer to those questions.
When basic good care is provided, the complementary therapies have a wonderful contribution to make to people’s comfort and quality of life. The “complementary therapy” that I most commonly employ is the simple practice of eliciting and listening to people’s stories. In the process of life-review, people often achieve a better sense of the meaning of their own life; their struggles and regrets as well as their triumphs and joys. They also may attain a deeper sense of the meaning of life in general.
Obviously for many people approaching death, the spiritual aspects of life come to the fore. Spirituality and religion are not synonymous. Although many people cherish a felt connection to God, spirituality also exists in a felt connection to one’s family that will live on for generations to come. And spiritual bonds can extend beyond family. Fatally injured soldiers may express a connection to their country which will survive partly through their sacrifice. In Montana, people I care for commonly express a sense of connection to the wilderness, the rivers and the mountains into which their body or ashes will go.
A number of alternative or complementary therapies represent resources for inner growth. Massage therapies can provide moments of peace and generate positive physical memories to balance the pain of illness. Therapeutic touch, an increasingly accepted nursing technique, can alleviate patients’ pain and anxiety. Relaxation training and meditation can help a person center swirling thoughts and calm emotions. Meditation and contemplative prayer can provide a place of safety and distance, not from, but within, the experience. This ability to remain centered and “well within oneself” in the middle of distraction, doubt, anxiety and bodily discomfort is recognized by many cultures and religious traditions as being critical preparation for the transition from life.
The techniques of dream work and guided imagery, skillfully practiced, can help people explore inner realms and uncover rich insights from their unconscious. Breath work can allow access to otherwise hidden domains of personal and transcendent experience.
A person’s culture, values, beliefs and temperament will all influence which, if any, of these practices will be helpful. But a common element among these techniques and therapies is that they foster a sense of inner confidence and openness. By relaxing body and mind a person can become more open to and less fearful of the mystery that awaits.
Costs of Better Care
This is one national crisis whose solution need not cost more money. When the basics of good medical and supportive care are provided, families are able to care for their loved ones at home. It’s what patients and families want to do.
Because dying people are, by definition, the sickest patients in the health care system, their care will never be inexpensive. However, home-based care of people with advanced illness, although not cheap, is much less costly than the institution-based, medically focused care dying people currently receive. Indeed, as comprehensive as it is, even full hospice care is significantly less expensive than the care that is provided in its absence.23,24
Although hospice is less expensive than our “high-tech” curative care, statutory requirements that a person give up life-prolonging care as a requirement for hospice under Medicare erect a significant barrier to utilizing hospice. This requirement imposes a “terrible choice” on seriously ill patients and their families. They must acknowledge that the patient is officially “dying,” an emotionally devastating milestone that no one wants to cross. They also may need to relinquish their relationship with their oncologist, cardiologist, neurologist or pulmonologist and give up access to the hospital or another round of chemotherapy. Expensive medications to build up blood counts or treat resistant cases of nausea and vomiting may not be available under hospice care. Is it any wonder that some people refuse to make that choice?
But, in fact, once admitted to hospice programs, the vast majority of patients and families are delighted with the care they receive. They become confident of being cared for, even in emergencies and as confidence builds, they tend to focus more on quality than absolute quantity of life. By providing a skilled and reliable home-based alternative to ambulance transports, emergency rooms, MRI’s and ICU’s, hospice experience shows that high levels of hands on care can be provided while remaining cost effective.
This either-or approach to Medicare reimbursement for hospice care is built on the untested assumption that providing life-prolonging and palliative care together would be too costly. The experience in Canada and Britain would strongly challenge this assumption. In both countries, care for patients with chronic, progressive illness is of higher quality and significantly less cost. Although both health care systems have their problems, hospice is widely available, and few people worry about leaving their family financially devastated as they die.
An important new model of affordable, enlightened long term care is provided by the Eden Alternative. Initially developed by Dr. William Thomas, the Eden Alternative has become a virtual movement within progressive segments of long term care, especially dementia care.25 In Eden nursing homes, there is strong emphasis on “greening” the environment with plants and pets. Intergenerational activities between seniors and young children and pleasurable human interaction are also fostered. The impact of “edenizing” nursing homes on patients with dementia can be profound. People who have been withdrawn often brighten when interacting with a colorful bird, affectionate dog or cooing baby. Even having responsibility for a plant has been shown to have notable impact on a person’s health.
The field of palliative care has advanced dramatically. Reimbursement structures and government policies have not kept pace. Unless bold and creative new solutions are helped to flourish, Americans won’t achieve the goals they say they want; to live out their lives in comfort and at home.
Where do we start? First, a formal audit of the effects of prevailing statutory limitations and regulatory policies on access to needed services and quality of care for people who are dying is urgently needed.
Second, creative models for delivering care have been developed and are ready for further testing. Demonstration projects, such as those provided for in S.628, the Advance Planning and Compassionate Care Act of 1999, introduced by Senators Rockefeller and Collins, can document the impact of alternative models of advanced illness care on clinical care, quality of life, and utilization of health system resources. Alternative eligibility for hospice care, simultaneous provision of hospice and life-prolonging care, wider application of PACE (Program of All-inclusive Care for the Elderly) and reimbursement models such as the Medicaring proposal of the Center to Improve Care of the Dying all warrant formal study.
Third, government can help by ensuring that medical education includes sufficient content in symptom management and the core skills of communication and ethical decision making.
Fourth, compensation of aides in the nation’s home health and long term care programs must provide them with a living wage and their own health benefits. Requirements for training and certification of aide level personnel must be raised. So, too, staffing levels must be raised, enabling aides in nursing homes the time to give adequate care to the residents. The costs of these “high touch” improvements would be modest and more than likely would be offset by a corresponding reduction in futile “high tech” care and emergency admissions to hospitals and intensive care units.
Fifth, America’s families are already giving their fair share in caring for their loved ones -- in fact many are doing so at the cost of injury to their own health. They deserve our support. Government can provide tax breaks for caregivers and, as one of the nation’s major employers, can model flexible workplace and health benefit policies, setting an example for industry to follow.
As someone who has actively opposed the legalization of physician-assisted suicide, I can tell you that opposition to physician-assisted suicide is shallow and insincere unless it is wedded to a constructive program of caring that includes increasing the number of health care professionals who are able to offer skilled care.
Government can ensure equitable access to critically needed services such as hospice and home care. But ultimately, this national crisis is not one that can be fixed by government alone.
The communities of our nation’s neighborhoods, workplaces, schools and the faith communities of our congregations also have critical roles to play. Each of us as friends, co-workers and neighbors can reach out to those we know as they are dying and to the families we know are struggling to provide care. We can even reach out to strangers in need. Compassion in Action’s Twilight Brigade of volunteers is an excellent example of what can be achieved. The critical service they provide is to show up. In so doing they give tangible evidence that they care and that the person who is dying still matters to them.
Other programs around the country also provide us with valuable models of volunteer training and community-based support. The Stephen’s Ministry programs, Parish nursing programs, Care Team Network programs in Texas and Alabama, among others, offer American faith communities, workplace communities and neighborhoods examples of strategies that work. We can and must build on these important examples.
In the midst of this crisis in end-of-life care, we have an opportunity to transform the way American society approaches the inevitable end of life. The root problems that comprise this crisis are many and deep, but every one can be addressed. We can build a future in which no one has to die alone or with their pain untreated. Congress can provide critical leadership in approaching this national crisis. Ultimately, the real solution to this national crisis lies in strengthening communities in which people share a sense of common life and look after one another, because to ignore each other’s needs would be seem as unnatural as it is.
Before we allow our society to recognize a so-called “right” to preemptive death, we must honor a basic human right to die in relative comfort, in the presence of caring people and in a clean, dry bed.
Each of us can play an important role in realizing this goal, as legislators, as clinical professionals, but also as family members, friends and neighbors. We can see to it that people are cared for in a way that ensures relative comfort, prevents a sense of isolation but that also and honors people in their passing.
The real solution to the crisis of care for the dying ultimately will emerge one person at a time by treating people in a medically competent, genuinely caring and even loving manner, allowing them to feel wanted, worthy and dignified even in their terminal frailty and physical dependence.
Thank you for the opportunity to give testimony on this most important topic.
1. Byock, I., Consciously Walking the Fine Line: Thoughts on a Hospice Response to Assisted Suicide and Euthanasia” J of Pal Care 9:3 pp 25-28 Autumn 1993
2. Approaching Death: Improving Care at the End of Life. Committee on Care at the End of Life, Institute of Medicine, ed: Field, MJ, Cassel, CK, National Academy Press, Washington DC, 1997
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Breitbart, W, Rosenfeld, BD, Passik, SD, et al. The undertreatment of pain in ambulatory AIDS patients, Pain 65: 243-249, 1996
Bernabei, R., Gambassi, G., Lapane, K., Landi, F., Gatsonis, C., Dunlop, R., Lipsitz, L., Steel, K., Mor,V., Management of Pain in Elderly Patients with Cancer, JAMA June 17,1998 Vol 279, No.23, 1877-82
Danis, M., Mutran, E., Garrett, J., Stearns, S., Slifkin R., Hanson, L., Williams, J., Churchill, L., A Prospective Study of the Impact of Patient Preferences on Life-Sustaining Treatment and Hospital Cost, Crit Care Med 1996, 24(11), pp 1811-1817
Covinsky, K., Goldman, L., Cook, E., Oye, R., Desbiens, N., Reding, D., Fulkerson, W., Connors, A., Lynn, J, Phillips, R., The Impact of Serious Illness on Patients' Families, JAMA, December 21, 1994 - Vol 272, No 23. pp 1839-1844
9. The Quest to Die With Dignity: An Analysis of Americans’ Values, Opinions and Attitudes Concerning End-of-Life Care, American Health Decisions, 1997
10. Spiritual Beliefs and the Dying Process: A Report on a National Survey, Conducted for the Nathan Cummings Foundation, Conducted by The George H. Gallup International Institute, Oct. 1997
Hofmann, J.C., MD, Patient Preferences for Communication with Physicians about End-of-Life Decisions, Annals of Internal Medicine, 1 July 1997, V127, No. 1, p1-11
12. Hines, S. C., Glover, J. J., Holley, J. L., Babrow, A. S., Badzek, L. A., Moss, A. H., Dialysis Patients’ Preferences for Family-Based Advance Care Planning, Annals of Internal Medicine, 18 May 1999, Vol 130, No. 10, pp 825-828
13. Family Caregiving in the U.S., Findings from a National Survey, National Alliance for Caregiving and the American Association of Retired Persons, 1997
14. Arno, PS, Levine, C. Memmot, MM, The economic value of informal caregiving. Health Affairs, 18(2):182-188
15. Emanuel, EJ, Fairclough, DL. Slutsman, J. Alpert, H. Baldwin, D. Emanuel. LL. Assistance from family members, friends, paid care givers, and volunteers in the care of terminally ill patients, NEJM, Vol 341, No 13, pp 956-963
Christakis, NA., Escarce, JE., Survival of Medicare Patients after Enrollment in Hospice Programs, N Engl J Med 1996; 335:172-8
Kinzbrunner, BM, Hospice: 15 years and beyond in the care of the dying, J. Pall Med Vol 1(No2)pg 127-137 1998
18. Mahoney, JJ, The Medicare Hospice -- 15 years of success, J. Pall Med Vol 1(No2) pg 139-146 1998
19. Schonwetter RS, Soendker S, Perron V, Marin B, Robinson BE, Thal AE, Review of Medicare’s proposed hospice eligibility criteria for select noncancer patients, Am J Hospice Pal Care May/June 1998 pg 155-158
20. Medicare Hospice Beneficiaries: Services and Eligibility, Office of the Inspector General, Department of Health and Human Services, OEI-04-93-00270, April 1998
I., Dying Well: The Prospect for Growth at the End of Life, Riverhead Books (1997)
22. Byock, I. The Nature of Suffering and the Nature of Opportunity at the End of Life, Clinics in Geriatric Medicine, Vol. 12: 2, pp 237-251, May 1996
23. An Analysis of the Cost Savings of the Medicare Hospice Benefit, Prepared by Lewin-VHI, Inc. for The National Hospice Organization, May 2, 1995] 335:172-8
24. Emanuel, EJ., Emanuel, LL., The economics of dying. The illusion of cost savings at the end of life," N Eng J Med 330 (8):504‑4, 1994
25. Thomas, W. H., Life Worth Living: How Someone You Love Can Still Enjoy Life in a Nursing Home, 1996, VanderWyk & Burnham, Acton, MA
presented before the
Congress of the United States House
Committee on Government Reform
Ira R. Byock, MD
Research Professor of Philosophy, University of Montana
Director of the Palliative Care Service
Principal Investigator for the Missoula Demonstration Project
October 19, 1999
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