Summary: Below, I write about Palliative Care: Transforming the Care of Serious Illness (Jossey-Bass, 2010), an outstanding collection of essays edited by Diane E. Meier, Stephen L. Isaacs and Robert G. Hughes. In this post I also focus on a a Dartmouth Atlas report, released just last week, spotlighting geographic variations in access to hospice care.
Often, hospice and palliative care are confused. They are alike in that both hospice and palliative care emphasize relieving suffering and improving the quality of the patient’s life. But while hospice care is designed for those who are clearly dying, palliative care provides comfort and pain relief for anyone who is seriously ill, regardless of their prognosis—whether a cancer patient who hopes to go into remission, or a patient who is expected to live for years with a chronic disease such as heart failure or Alzheimer’s.
Palliative care rejects the false dichotomy between “comfort” and “cure.” The patient continues to receive treatment that might cure—or at least extend life—while also benefiting from the expert pain management that palliative care specialists offer. (Newer experiments in hospice care also are moving in this direction, allowing patients to continue treatment if they wish.) A palliative care team also counsels the patient and his family, explaining the benefits and risks of the patient’s options, taking the time to answer all of their questions, so that a patient can make an “informed choice” about future treatment, rather than simply giving “informed consent.”
Both hospice and palliative care receive high marks from patients and their families. Yet, the editors of Palliative Care observe, most seriously ill patients still wind up spending the final months–or years–of their lives bouncing in and out of hospitals. And at the end, “after years of roller-coaster hospitalizations, more than half of all Americans die among strangers, hooked up to a variety of machines in a hospital setting.”
As recent research from the Dartmouth Atlas Project discloses, this is in part because many patients don’t have the opportunity to choose hospice care. The report, which is titled “Quality of End-of-life Cancer Care for Medicare Beneficiaries,” highlights “Regional and Hospital Specific” variations in whether cancer patients are offered Hospice care, revealing that; “Even among the nation’s leading medical centers, there is no consistent pattern of care or evidence that treatment patterns follow patient preferences.” Rather, the report demonstrates that “many hospitals and physicians aggressively treat patients with curative attempts they may not want, at the expense of improving the quality of their last weeks and months.”
David C. Goodman,,lead author and co-principal investigator for the Dartmouth Atlas Project sums up the report’s findings: Whether or not cancer patients receive hospice care seems to have “less to do with what they want, and more to do with the hospital where they happen to find themselves.”
Nevertheless, in Palliative Care: Transforming the Care of Serious Illness, Meier et. al. make it clear that we are on the cusp of changing the American way of dying—both for those who die over a period of months, and those, suffering from chronic diseases such as Alzheimer’s, who die over a period of years.
Indispensable for anyone interested in this issue, Palliative Care provides a comprehensive, in-depth look at the history and future of palliative and hospice care in a series of seminal essays by physicians, nurses, medical ethicists, and patient advocates including: Diane Meier (“The Development, Status and Future of Palliative Care,”) Marilyn J. Field and Christine Cassel (“Improving Care at the End of Life”); Elizabeth Kubler- Ross (“Hope”) Eric J. Cassel (“The Nature of Suffering”); Betty R. Ferrel and Ness Coyle (“The Nature of Suffering and the Goals of Nursing”); Daniel Callahan (“Death: the Distinguished Thing”); Kathleen M. Foley (“The Treatment of Cancer Pain”); and Carol Levine (“The Loneliness of the Long-Term Care Giver”).
Other essays focus on “Expanding Boundaries, Overcoming Barriers” to hospice care, and “Variability in Access to Hospital Palliative Care in the United Sates” despite the “Cost Savings Associated with Palliative Care.”
In a recent phone interview, Meier, the book’s lead editor, confirmed what the Dartmouth Atlas report reveals about geographic variation: “My personal experience in New York City is that doctors don’t refer to hospice, don’t know how to refer, and haven’t worked with hospice in the past.”
What makes the American way of dying so difficult? It is not just our fear of vanishing from the face of the earth, but the scent of failure and shame that we associate with death.
As palliative care pioneer Diane Meier explains in the opening chapter of Palliative Care: Transforming the Care of Serious Illness (Jossey-Bass, 2010), the success of modern medicine “has created an expectation that all illness can be treated, if not cured, and that ipso facto, with enough research death itself is preventable.”
The “presumption is that science can defeat death,” Meier observes. Take that presumption to its illogical extreme and “each death that does occur requires explanation, is something that could theoretically have been prevented, and thus reflects a failure –a failure of the family to find the right doctor, a failure of the individual to take good care of himself or herself; of the doctors to know the latest protocols, of the hospital to prevent the unpreventable; of society to invest adequately in research.”
Thus, Meier explains, we have come to view death as a “mistake”—a “personal failing or someone else’s fault—in a word, wrong.”
A Brief History of How We View Death
This was not always the case.
In the early Middle Ages, death was a central part of a community’s life where it was viewed as “routine” if “unpredictable.” The shock of death was “tamed” through “social rituals and codes of behavior," Meier explains, quoting Phillip Aires’ The Hour of Death: “rites in the bedroom . . . express the conviction that the life of a man is not an individual destiny but a link in an unbroken chain, the biological continuation of a family or a line that begins with Adam and includes the whole human race.” Granted, “the community was weakened by the death of one of its members,” but it recovered “its strength and unity by means of ceremonies. . . . death was not a personal drama but an ordeal for the community, which was responsible for maintaining the continuity of the race.”
Later in the Middle Ages, when Friars and others worked to convert a quasi-pagan population to Christianity, they put a new emphasis on the individual, teaching that each person should worry about his or her own death and an afterlife of punishment for sin. During this period, “a change in attitude developed with a rise in the sense of individual fate as opposed to collective destiny”—an individual destiny in an afterlife that could be secured [only] by good behavior.” No amount of ritual or ceremony could save the sinner from punishment, and what Aries calls “The Tame Death” of the early Middle Ages became a personal drama—“The Death of the Self.”
In the period that followed, “the rise of intimate family relationships replaced the community as the primary seal of loyalty and personal survival.” The Romantic Movement emphasized the deathbed scene and arts of dying (“ars moriendi”) with the dying person surrounded by family and a few intimate friends, amid much weeping and drama. Sometimes a painter was called in to make final portrait of the loved one. The much feared “Death of the Self” gave way to a new perspective on death as “the Death of the Other,” softened by a belief in “permanent reunion with loved ones after death.”
We might have been better off if we had stopped there.
But in a modern era, medical science would take center stage, and ironically, our financial and emotional investment in medical science would lead to a belief in medical miracles. In “our current phase” Meier explains, “death is unconsciously or theoretically believed to be avoidable with enough investment in research—an expectation strengthened by the successes of public health and modern medicine in allowing, for the first time in human history, most people in Western societies to live to old age.” Thus death comes to be seen as a failure, or a “mistake.” If someone dies, someone or something must be to blame.
At this point, we began to view death as somehow unseemly. . “If death is avoidable and therefore a failure,” Meier continues, “it is unsuitable for everyday life—stigmatized, hidden, and avoided in polite conversation.” Rather than dying at home, surrounded by the community, or a smaller circle of family and intimates, we die in a nursing home or hospital. There is the hope that the hospital can perform miracles in the battle against death, but the hospital also becomes "a place to hide the dying person from prying eyes. . . "
"The modern ritual of death involves several prolonged stays in the hospital—often in an intensive care unit," Meier observes. "This ritual allows the family to say to their friends and neighbors, ‘We did everything possible; we got the best care possible,''" while also keeping " the concrete and physically distressing aspects of the illness at a controlled and safe distance." The family also "avoids being labeled as a friend of death because of the acceptance of death. The physician becomes the agent of his society—battling death is the raison d’etre of modern medicine.”
Meier explains that “hiding from the indecency of death extends to the mourning process. . . By the mid-twentieth century, the traditional mourning rituals and codes of behavior—wearing black, avoiding social events—had all but disappeared in the United States and other developed nations." She quotes Geoffrey Gorer’s Death, Grief and Mourning in Contemporary Britain: “At present death and mourning are treated with much the same prudery as the sexual impulses were a century ago . . .Today it would seem to be believed, quite sincerely, that sensible rational men and women can keep their mourning under control by strength of will and character, so that it need be given no public expression, and, if indulged at all, as furtively as if it were an analogue of masturbation.” Both death and grieving have been banished from polite society. The reality of death itself has become taboo. We are now in the era of “The Invisible Death.”
All of this serves as background to help explain the rise in the hospice movement which, in turn, led to palliative care. Both were born “in reaction to the stigma and the isolation of dying,” Meier observes.
How Palliative and Hospice Care Help Preserve Our Self-Hood
Meier views both palliative and hospice care as “preventive care.” But in this case, the goal is not to prevent death; it is to prevent a crisis of pain, of panic, a feeling of being overwhelmed and the body shattered by forces beyond our control. As Eric Cassell puts it in his contribution to Palliative Care: “[S]uffering can be defined as the state of severe distress associated with events that threaten the intactness of the person.”
We all want to die “with dignity.” But what does that mean? In a 1975 radio interview, Elizabeth Kubler Ross, author of the International best -seller “On Death and Dying” said it best: “To die with dignity to me means to die within your character.” In other words, you are still yourself. Your self-hood is intact.
She elaborated: “That means that there are people who have used denial all their life long; they will most likely die in a state of denial. There are people who have been fighters and rebels all their life long, and by golly, they want to die that way. And to those patients, we have to help them, to say it’s okay.”
Or, as Meier put it in a telephone interview a few weeks ago: the goal of both palliative and preventive care is “to support the person to stay within their (own) compass.” The hospice caregiver is not selling death; she is not attempting to persuade the patient to accept death. Nor is she trying to lengthen life. (The patient will die when the time has come.) Whether the patient dies sooner or later is not what is at stake: what is important is how she dies.
In Part 2 of this post, I will discuss why the U.S. has been slow to adopt hospice and palliative care. In part this is because we have so much faith in modern medical technology–what one doctor calls “gizmo idolatry.” Some of that technology is, indeed, life-saving. But in too many cases, we succumb to the “technological imperative” which says that if the technology is there, we must use it–even if it is extremely unlikely that the patient in question will be helped. Here, I’ll name hospitals that frequently administer chemo during the final two weeks of life.
I’ll investigate the advantages of palliative care in lowering costs, and improving the quality of the patient’s life– as well as a new study which suggests that some patients may live longer if they receive palliative care . Nevertheless, many patients are never given the option. Here, I’ll provide two maps, one, from the Dartmouth Atlas, which shows regional variations in the use of hospice care (despite the fact that 98% of Americans live within 60 minutes of a hospice), and a second, from the Center to Advance Palliative Care, which shows disparities in access to palliative care, state by state.
Palliative care faces both economic and cultural barriers. Some argue that by offering a patient hospice or palliative counseling, we are “taking away Hope.” Here, Meier points to Tolstoy’s “The Death of Ivan Ilych” which reminds us how it can be even crueler to pretend that the patient is not dying: “He suffered because no one was willing to admit what everyone, including himself, could see clearly. . . . . This lie that was being told on the eve of his death, that degraded the formidable and solemn act of his death . . . had become horribly painful to Ivan Ilych”
Finally, in part 2, I will discuss what reformers need to do to make palliative care available to everyone who wants it. Meier emphasizes that more and more of us are dying of chronic diseases over a period of years. As we live longer, Alzheimer’s and other forms of dementia will afflict many of us. Yet, “we don’t have a chronic care system” in this country, Meier notes. A patient has two choices: acute hospital care,. or stay at home and hope that his family can care for him. “The only chronic care system we have is family,” Meier observes, “unsupported, unguided and financially punished.” Thus, many patients wind up bouncing from home to hospital to nursing home and back again. Long-term palliative care at home (or in a community home) would be far less expensive –and far more humane.