Dying Well in America: What Would Success Look Like?

by Ira Byock, MD

Ira Byock has been a hospice physician in Missoula, Montana, since 1987, tackling the physical, psychosocial and spiritual pain of dying patients, "one person at a time." He has long advocated for a growth and development model to define -- and evaluate -- what hospice care at its best tries to accomplish with terminally ill patients, when cure for their illness or even appreciably longer life is no longer realistic.

In recent years Byock has advanced this notion about the possibilities for living well at the end of life on a number of fronts, by developing the Missoula-VITAS Quality of Life Index, a scientific outcomes measurement tool for the dying; writing the 1997 book, Dying Well: The Prospect for Growth at the End of Life; and founding the Quality of Life's End/Missoula Demonstration Project. The latter is a 15-year effort to engage Missoulans in a discussion of what dying well really means to them. He is also Program Director of The Robert Wood Johnson Foundation's $12-million initiative, Promoting Excellence in End-of-Life Care, which will support innovative end-of-life projects nationwide. Byock's diverse clinical and programmatic experiences, all aimed at improving the care received by dying patients and their fa milies, made him singularly well suited to present the keynote address at the 1997 Last Acts: Leverage Points conference in Washington, DC, October 30. An abridged version of his talk follows.

The Changing Context of End-of-Life Care: Where We Are

It is now inescapable that too many Americans die badly. We know that too many people's preferences for care are often ignored, even when clearly stated. We know that pain and other sources of physical distress associated with progressive illness are, l ikewise, inadequately addressed. And we know from SUPPORT's Family Impact Study that impoverishment is another frequent consequence of dying in America.1

These findings have attracted the attention of the Institute of Medicine, whose careful study well summarizes the current state of dying in America and offers thoughtful recommendations for corrective change. The universities and schools of medicine, nursing and public health are paying attention. Curriculum is starting -- although just starting -- to change. The foundations and governmental funders of research and clinical innovation are also paying attention. In many ways, we can all sense that a new d ay is dawning -- a new commitment to look at the hard facts and find ways to improve the situation.

But while prospects for success look ever brighter, the current context in which we are practicing, and in which the persons we seek to serve are dying, remains woefully problematic. Among the general public, of course, there is anger, especially regar ding care at life's end. This is most dramatically apparent in the groundswell of support for legalizing physician-assisted suicide. The anger is not surprising, but in response, Americans are looking for someone to blame. In this we should be wary.

Hospitalized patients with serious complications of chronic heart, lung or liver disease were asked whether they wanted cardiopulmonary resuscitation (CPR) in the event that their heart stopped.2 Seventy percent said yes -- despite the fact that CPR has very little to offer patients with far advanced diseases of this nature. The large majority (88%) of patients said they would not want to be kept on a respirator for more than a therapeutic trial, yet less than one in eight had discussed this possibility with their physician. And what compounds the problem is that, among those who had not talked about ventilator support with their doctors, less than one in five said they wanted to have such a conversation.

It's pretty clear that at least some of the medicalized misery that dying has become is self-inflicted. As Pogo once observed, "We have met the enemy and he is us."

In truth, a collective denial of dying is a constant that runs through the confused and conflicted state of affairs that characterizes dying and care for the dying in America today. Dying is the proverbial elephant in the living room -- actually more of an imposing maroon boulder on the psychological landscape of America -- a boulder that no one talks about, that we try hard to pretend is not really there.

What Would Success Look Like?

Before we can talk about applying leverage with any social problem of this proportion, we must determine where leverage should be applied. In what direction do we want change to occur? In working toward improving care for the dying, we must first ask th e question: What would success look like?

In finally asking that question, as a culture, we will find that the answer has been available to us all along, in the form of the stories of real people who have died well, from their own or their families' perspective. Stories of people's positive experiences with dying are not an indulgence or entertainment. They are perhaps the only way to effectively convey the complex nature of the dying experience -- its tone, its texture and its color. Through these stories we can see, touch and feel the depth and potential richness of this time, the inherent struggles and sadness, but also the love and courage and commitment.

Such stories also allow us to witness an aspect of dying that may sound overly philosophical or "new age" when stated. It is the fact that being with people who are dying in conscious and caring ways is of value to them, but also to us. Their reminiscences, our care, and the time we spend together all contribute to a legacy that enriches our lives. These stories help us to imagine how people could possibly live in the shadow of death, while growing within themselves and becoming closer to those they love.

I suggest that the components of success are actually fairly straightforward. We need to be assured of relative comfort while we die. We need to be assured that our wishes for care are accepted, and that our families will have effective support in their caregiving and in their grieving. Beyond this, as a culture, we need to reintegrate dying within living. Doing so need not glorify or romanticize this inherently difficult time of life. We must, however, accept it; and that acceptance must be reflected in our general cultural values, normative behaviors and general education, as well as in our professional culture, through relevant clinical protocols, professional training and institutional policies.

What would success look like?
  1. For individuals, success involves completing a life -- identifying, saying and doing the things that "matter most."
  2. For families, it involves feeling that their loved ones are comfortably cared for in a manner that honors and even celebrates them in their passing.
  3. Success on a community level would occur when people look after one another, because to do otherwise would seem unnatural.

Currently, elderly people are "found down" by EMS personnel -- that is, unable to call for help -- with alarming frequency and often dismal outcomes.3 This situation leads commentator Edward Campion to conclude: "The best solution to the dangers of isolation is the obvious one: being part of a community that will respond."

To paraphrase ethicist Lori Zoloth-Dorfman, the vision we should strive for is one in which people are being born into the welcoming arms of community and dying from the reluctant arms of community. We will know we have reached our goal when a billboard, such as the one below, describes the full array of services providers are eager to market -- from the beginning to the end of life. This is what I think success would look like.

Leveraging Change: the "Levers"

I. Standards

In leveraging change, definitions and clinical standards for palliative and end-of-life care are essential. Without them we are without a direction. As we explore innovative means and models for delivering access to excellent, comprehensive palliative care, the hospice community and profession have established a clinical standard toward which the larger health care system can and must build. Hospice at its best has given us best practices against which to compare our own processes and benchmarks agai nst which to compare our outcomes.

The World Health Organization defines palliative care as: "The active total care of patients whose disease is not responsive to curative treatment. Control of pain, of other symptoms, and of psychological, social and spiritual problems, is paramount. The goal of palliative care is achievement of the best quality of life for patients and their families."

In significant ways palliative and hospice care are more similar to pediatrics, or to family practice in its attention to newborns and children, than they are to adult medicine. Contemporary adult medicine tends to be almost exclusively problem-based. Patients present with problems, and providers approach them through a problem list. But pediatrics and family medicine adopt a different stance: newborns with their families warrant our evaluation and intervention, not only to screen for potential problems, but also because of the critical stage of human life they are going through. Pediatrics thus takes a three-pronged approach of dealing with identified problems, preventing foreseeable problems, which we know can occur during this time, and protecting and promoting opportunities for the infant and family to grow and develop to their full capacity. This similarity between pediatrics and hospice/ palliative care is reinforced by the National Hospice Organization's Standards and Accreditation Committee,4 which applies a treat-prevent-promote scheme to key intervention strategies for patients with progressive, incurable illness and their families.

Dying, like infancy, represents an inherently turbulent, difficult time of life for the individual and for the family. We needn't wait for problems to develop to offer our services. We can provide anticipatory guidance -- not only to prevent physical problems, but also to offer help with the predictable issues of life closure and completion. This developmental model for appropriate end-of-life care also allows the large majority of instances of emotional turmoil and personal suffering to be understood as part of the difficult, but normal, process of living with the profound challenges of progressive illness, function al disability and awareness of impending demise. Patients and family members who are suffering need not be labeled "ill" or pathological for their distress to be fully acknowledged and effectively addressed.

II. Measurement Based on Standards

We need to build the evidence base for palliative care, but in doing so, we must use measurement tools that reflect outcomes in our very best existing programs. If we measure only, for example, compliance with living wills and the management of pain, we will have lowered our sights considerably from what is possible. Currently, many measurement tools do not suffice to measure the best of what we do. They lack face validity.

But now we have hope for the future. Under the masterful stewardship of Dr. Joan Teno, a toolkit of such measures for end-of-life care is now being developed. In September 1997, a second phase of this process began with a conference supported by the Institute of Medicine and The Robert Wood Johnson, Nathan Cummings and Commonwealth foundations. This effort will, I hope, evolve into a Palliative Care Outcomes Collaborative pro cess to continue development of a set of measures that are (a) based on standards, (b) methodologically sound and (c) practical and pragmatic.

III. Accreditation and Certification

German sociologist Max Weber said that social movements that become successful become routinized by the agency of bureaucracy. Therefore, ironically, bureaucracy is the means and mark of our success to this point.

Of course, the problems with bureaucratic oversight as we now know it are that it takes effort and too often measures things which are frankly irrelevant to the core of our work -- the care of dying patients and their families. Yet bureaucracy need not be something to tolerate or, worse, to "game," but rather another way to advance toward best practices.

I believe that oversight and scrutiny of hospice and palliative care must significantly increase. Obviously, fraud in business practices cannot be tolerated. But beyond basic fiscal ethics, programs such as the Joint Commission on Accreditation of Heal thcare Organizations' accreditation of home health and hospice should be expanded and continually refined. Additionally, there must be a way for consumers at all levels to distinguish excellent from merely adequate programs. Hospice report cards such as the one being developed by the American Hospice Foundation are urgently needed.

IV. Policy and Public

Expectations Indirectly, but ultimately with most power, public and policy expectations drive effective change. In health planning and policy, I think success would be a three-tiered system in which:

  1. There is general competence in palliation and end-of-life care in the larger medical system;
  2. There is universal access to specialized hospice and palliative care in each of our communities;
  3. There exist regional centers of excellence in palliative care, for purposes of tertiary referral of the particularly difficult cases, for training in the specifics of palliative care, and for ongoing research.

Currently the corporate psychology of managed care too often sees end-of-life hospice and palliative care as a "frill," not discernably "value-added" beyond existing home health care. Worse yet, palliative care may be perceived by payors as a service a rea that attracts high-cost patients and construed by the public as a way for health plans to avoid paying for appropriate and expensive life-prolonging care -- an image managed care organizations are understandably loathe to reinforce.

Things eventually will change. Our public education and marketing efforts should promote demonstrably high standards of end-of-life care as a marketing wedge, which it inevitably will become as the baby boomers age.

Leveraging Change: The Agents of Change; Forces Acting on the Levers

To move the maroon boulder, the following agents of change must exert force on the levers:

I. The Medical Establishment

The medical establishment refers to academia; universities and journals; governmental oversight, based on standards promulgated by organizations like the Agency for Health Care Policy and Research, the Institute of Medicine and blue-ribbon commissions and accrediting bodies; and professional associations.

II. Boomer Consumers

The fact that the baby boomers are aging, to my mind, is the major force underlying the changing context of end-of-life care. We boomers have come to realize that death and dying are no longer mere abstractions. Most of us have had the experience of sit ting with a grandparent or parent as they were dying. Some of us have helped care for a dying sibling or close friend. Others of us have lain beside a dying spouse. Some of us have even cradled children as they died. Some of us are currently living with progressive illness. What we know about dying is not good, and we want to make it better.

III. Payors

Payors have a legitimate need to know what they are getting for their money. I would go further to assert that in the current turbulent context of health care, they have a responsibility to know what their clients -- you and I and our families -- are getting in terms of the quality of care.

IV. Funders of Research and Demonstrations

Funders include both governmental agencies and the private foundations that nurture creativity and innovation in professional practice and public life. Many of the country's leading health-oriented philanthropies have made serious commitments to impro ve end-of-life experience and care.

V. Media

Media are key agents of change. Beyond simply informing us, media can keep public attention on component issues, advance the public discussion and hold the professionals' and policy-makers' feet to the fire. Every major city newspaper, each of the natio nal news magazines and various broadcast documentaries have begun to look seriously at issues surrounding dying and care for the dying.

The content of this coverage has also changed in the past year. No longer do reporters simply want to know what we think about Kevorkian or whether we believe morphine shortens people's lives. They are willing nowadays to delve into the complexity o f issues and the difficulties that real patients and families face within the uneven existing health care system.

The Internet has rapidly emerged as an increasingly important form of "narrow-casting," a means of providing specific information not only to professionals but to end users among the general public who need it most. It is a powerful way of raising expec tations, but also of improving the effective partnerships that need to exist among patients, families and their clinicians.

In addition to excellent reporting, we must encourage fiction that explores the poignant complexities of the dying experience and the nuances of care. When we see dying portrayed in more than superficial or stereotyped ways in the afternoon "soaps," w e'll know that the subject has fully permeated the American culture.

The Energy for and Raw Materials of Change

  1. Economics: Economics will continue to drive attention to these issues, because end-of-life care is inherently expensive.
  2. Research: Research into the problems, what works and what doesn't provides the necessary raw materials for policy development and institutional change.
  3. Personal Responsibility: In approaching life's end, we baby boomers want to improve end-of-life experience and care, first for our loved ones -- our grandparents and parents -- and eventually for ourselves.
  4. Healthy Skepticism: We bring the same healthy skepticism to end-of-life care that we applied to the assumptions of pregnancy and obstetrical care when we were living through child-bearing years.
  5. Creativity: As I travel and teach and learn, the thing that brings me most delight -- and causes me to be solidly optimistic about the future of palliative care -- is the extent of creative energy I now observe. It is happening on the level of the clinica l professions, in our institutions and universities, and at the level of the community.

Evidence that Change Is Occurring

A number of innovative demonstration programs and projects across the country are providing examples of what success would look like. These efforts are crucial, because demonstration projects do for communities and systems what personal stories of success at dying do for individuals and families. They demonstrate what is feasible. They raise expectations, establish best practices and promote in our collective imagination the seeds of what is possible. To give just a few examples:

  • Bob Stanley and staff of Auntie Helen's Fluff 'N' Fold, a volunteer organization in San Diego, are doing what is necessary to make the "right" to die in a clean, dry bed a reality -- offering free laundry services and free clothing and bedding to peop le with AIDS.
  • Responding to an inordinately high rate of suicide among the elderly population in rural Nebraska, Sunny Kontor created the Telecare Program, an intergenerational project that pairs students in school with older adults living alone. They simply make phone calls, maintain contact and interest, and it works.
  • From a health care systems perspective, there is Supportive Care of the Dying: A Coalition for Compassionate Care, a coalition of nine Catholic health care organizations, has come together to improve end-of-life care on a wide scale.
  • Across the country, communities are exploring values and goals for their residents facing advanced, life-threatening illness. In Maine the Coalition for Dialogue on Death and Dying, the Colorado Collaboration on End-of-Life Care and the Colorado Coll ective for Medical Decisions, in Sacramento the ECHO Project (Extreme Care/Humane Options), and the Respecting Your Choices Project in LaCrosse, WI, are each exploring the values and goals of care for people facing advanced, life-limiting illnesses.
  • In my own community, the Missoula Demonstration Project has begun to reach out to those who are dying and in need. We are also building a platform for research and offering our community as a laboratory of experience for what works to improve the quality of life's end and what doesn't. While the project draws heavily upon local expertise in medical care for the dying, it is designed to return primary responsibility for end -of-life care to persons, their families and the community. The goal is to serve as a catalyst to help nurture local cultural attitudes toward death and dying, by facilitating an authentic process of community-based introspection through which the community can define its own values and work toward achieving its own identified goals.

Ultimately the result of applying the levers of change is not simply to move the unsightly, unseemly blight of dying from our view, but rather to transform the crisis of dying into an opportunity for dying well on one's own terms -- safely, comfortably, in a manner of one's choosing and with support for those left behind in their process of grief. It involves not simply changing the color of this blight, but taking dying back within the psychological landscape of our culture and reintegrating it within the life of the individual and the community.

In conclusion, I want to issue a call for action -- for continued action. We have much work to do and many details to work out within the various programs and demonstration projects that we represent.In performing our administrative duties and our planni ng and policy development, as well as in our clinical work, we can -- and, I believe, we must -- hold a vision of dying as an integral part of the life of the individual and the family, and a rewarding and valued part of the life of our communities. If we can keep our eyes focused on that vision, success will ultimately be well within our reach.

  1. Covinsky K, Goldman L, Cook E, et al. The impact of serious illness on patients' families. JAMA. 1994; 272:1839-1844. (return to text)
  2. Hofmann JC. Patient preferences for communication with physicians about end-of-life decisions. Annals of Internal Medicine. 1997; 127:1-11. (return to text)
  3. Gurley RJ, Lum N, Sande M, et al. Persons found in their homes helpless or dead. New England Journal of Medicine. 1996; 334:1710-1716. (return to text)
  4. National Hospice Organization, Standards and Accreditation Committee. A Pathway for Patients and Families Facing Terminal Illness. 48 pages; $11.85, with discounts for NHO members and multiple copies. Call the NHO Store at 800/646-6460. (return to text)