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.
I see these kinds of behaviors all the time in my part time hospice job: family members who worry more about oversedating the dying than whether or not their pain is controlled, or who insist on force feeding or giving IV fluids to a patient who is only irritated by the attempt . . . and the wishes of the dying person themselves are not even considered.
Yet these are loving family members who want to do the right thing.
When I look at the struggles of a dying patient in the ER or ICU, who has bounced back for the 5th time in a month with exacerbation of COPD, CHF, or renal failure, I think of the pompous politicians who brag how the US has the best health care in the world . . . and then I get angry.
We do NOT have the best health care in the world as long as we treat patients like that.
I really don’t know what else to say, except that I, too, have seen people (older relatives) forced to endure agressive, extended care that caused them great pain
At the time, I was very young-couldn’t do anything except cry.
Palliative care “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.” According to the “palliative care” program with our county Visiting Nurses Association, this is not so. And the so-called palliative care team does counsel the patient and the family explaining how the benefits of the patient’s options, “do not apply to them.” Which leaves the patient (at least my 95-year-old mother) the option in her final months or years of her life bouncing in and out of the local hospital.
What services does one receive with this “palliative care” program? A nurse will visit every week instead of once every other week and you have the services of calling a nurse twenty-four hours a day. However, the patient cannot participate in any pain management or see any other “specialist” while on the program. The result of not being able to continue the “palliative care” program leaves the patient and the caretaker in a crisis of pain, of panic, a feeling of being overwhelmed and shattered by forces beyond one’s control, whenever there is an emergency medical situation. Just as it was before being on the program.
There must be some “void” in Berks Country, Pennsylvania.
Happy Thanksgiving, and I understand a lot about chronic pain hydrocodone use as 6 years of suffering from a back injury and all I ask is not to buy these drugs online without prescription, it is dangerous and not we will give them, is worrying as this approach has grown significantly but that is because unscrupulous people who do not think about the pain we have from the disease, it is also good to say that there are different places that offer information on diseases such as Alzheimer’s, pain chronic, among others and one of them is findrxonline where I find what I need in a safe and sharing views online with people suffering like me.
What your mother is getting is not palliative care. I would call the home nursing association and ask if the nurses are accredited, have a master’s in palliative care, et.
I would also consider calling the National Board of Certification of Hospice and Palliative Care nurses. (Click here for info http://www.capc.org/palliative-care-professional-development/Licensing/
Let the Board know that Berks Cty. is using the term “Palliative care” without providing palliative care.
Not sure what is going in in your mother’s part of Pennsylvania, but if you go to this report,
and scroll through until you come to a map of the U.S., you’ll find that access to palliative care in Penn. is (like accesss in New York State) mediocre.
Finally, here is a listing of palliative care and hospice care in Penn. You may find something close to your mother that would work.
Sorry, here’s hte link to listing of pall. & hospice care in Penn.
Gregory: I agree with Maggie. What you are getting is NOT palliative care.
Palliative care focuses on symptom management of a patient who is still pursuing treatment of their illness. They may not have a 24/7 access like a hospice patient (in my organization palliative care patients do not), but they can see any provider they want for services.
Many of our palliative care patients will become hospice patients when they finally decide treatment is futile.
Quite a few lessons come from advanced and thoughtful veterinary care. I’ve had animal friends that clearly did not want to go on, but I also was able to provide my best friend, Mr. Clark, who happened to be a cat, with an extended quality of life. While the American Veterinary Medicine Association has issued guidelines, they aren’t well known to vets, and we are trying to start an outreach program — as well as help for the survivors.
Mr. Clark was diagnosed with an inoperable, non-metastatic but locally aggressive oral squamous cell carcinoma. He made it abundantly clear that he wanted to continue his regular activities and relationships, and we gave him that chance. Palliative radiotherapy and chemotherapy helped slow the disease, but most important was painstaking supportive care. Luckily, I had the skills.
Cutting to the chase, he had an extra 6-7 months of comfortable, reasonably active (for a sedentary cat) life, and died, pain-free, in my arms, earlier having made his goodbyes to other family. As the disease progressed, he did need around-the-clock opioid and fluid injections, which he barely noticed. He needed scrupulous wound care, which he indicated felt good.
He taught a lot of lessons. When a human might bewail that part of his face was necrosing, he’d seem to say “that’s _your_ problem,” and thoroughly wash your face while keeping up comments. His face looked ugly, but the damage was being closely controlled and painless. If a human wasn’t feeling well, he’d keep them in bed and with good company. He also made it clear that unlimited chicken liver and tuna was expected.
The financial cost wasn’t negligible, but not overwhelming. More important was being aggressive about finding resources and applying them. In other cases, I needed to make on-the-spot adaptations in treatment, checking with vets after the fact.
With animals, euthanasia is available, and sometimes is the right choice. The first-level local vets suggested it immediately, but, in retrospect, said they hadn’t considered palliative care. With my mother, and another cat, Clifford, it would have been humane. With Mr. Clark and Lady Chatterley, they had an obvious will to live and I was glad I respected it.
The specialists at Tufts used the guideline for euthanasia: what are the three things he loves most? When he can’t do them, it’s time. He was able to do those things until his last hours.
I miss him very, very much, but all who knew him are better people because of him.
The phrase I have been using for years is that “all US citizens deserve as pain free and as dignified a death as the medical enterprise can possibly offer”
Also this is THE most important issue around which, not only US Medicine, but our US culture can, someday soon I hope, mature.
Dr. Rick Lippin
I think that for most of us, the most important health care that we will ever receive will be our end-of-life care. And these days, “end of life” doesn’t mean two weeks or even two months.
In the years to come, most of us will die slowly from long-term chronic diseases.
The care that we receive (or don’t receive) will define our quality of life in our final years.