End-of-Life Choice, Palliative Care and Counseling

Posts TaggedHospice

Your Voice: Facing death with dignity, saying no to futile care

Cincinnati.com

July 22, 2011
By Susan Brogden

I want to die like my mother did.

Last Oct. 1, she was diagnosed with ovarian cancer. She was 85. It seemed obvious that treatment would be both brutal and futile. But as a matter of course, she was referred to an oncologist.

The oncologist was positively bullish on treatment. He said her age was not an issue and pronounced her “spry.” He recommended the removal of her entire reproductive system, with chemotherapy to follow. Chemotherapy, he assured us, was “kinder and gentler” than it used to be. Without treatment, he estimated that she would live perhaps three to five months. Treatment might double or triple her time.

We were befuddled. My mother was anything but spry. The treatment sounded gruesome. And what was the benefit of doubling her remaining time, if those extra months were spent recovering from surgery and then enduring chemo? So she declined.

She died not quite three months later, without ever seeing another doctor. She spent her remaining time in her apartment, surrounded by things and people she loved. Hospice of Cincinnati managed her care. And she died in her own bed, with my sisters and me and a Hospice nurse at her side – no 911 calls, no strangers, no flashing lights, no needles, no anguished last-minute decisions.

In 2009, Sarah Palin famously accused the Obama administration of proposing “death panels” to judge seniors’ “level of productivity” and decide “whether they are worthy of health care.” This was a response to a proposed amendment to the Affordable Care Act that would have covered the cost of end-of-the-life planning discussions between doctors and patients. The amendment was dropped. But my mother would have welcomed a compassionate and honest conversation with a physician about the physical, emotional, and – yes – financial cost of resisting her disease.

Money does matter here, not because a life can be assigned a value, but because we need to talk honestly about what’s purchased with the dollars spent on end-of-life treatment for the elderly with terminal conditions. How many patients, if they fully understood their illness and their options, and if costly, unpleasant treatments were neither encouraged nor discouraged but merely explained, might accept death with composure?

Let’s be honest about the realities of terminal illness in the elderly. Let’s embrace palliative care as a matter of course instead of pronouncing them “good candidates” for treatment. Let’s focus on addressing physical, spiritual and emotional comfort. We’ll simultaneously improve the quality of both life and death for those we love, while ensuring that limited health care dollars are used where there’s a real chance of altered outcomes.

Read the story in the Opinion section at Cincinnati.com.

End-of-Life Care: A Portrait

by Paula Spahn
July 5, 2011
The New Old Age

Coming soon to a public television station near you: “Consider the Conversation: A Documentary on a Taboo Subject.”

Two friends and amateur filmmakers in rural southern Wisconsin put together this hourlong look at the way Americans think about, or try not to think about, what we’ve euphemistically come to call end-of-life questions.

Michael Bernhagen became a hospice worker after his mother died at age 81 of advanced vascular dementia without any health care professional ever mentioning the word “hospice” to his family. He conducted the film’s 40-odd interviews with chaplains and ministers, doctors, nurses, authors, researchers, patients and passers-by on New York City streets. Terry Kaldhusdal, a fourth-grade teacher whose brother died of pancreatic cancer at 53, was the guy behind the camera.

“Without our personal losses, this project probably wouldn’t have happened,” Mr. Bernhagen told me in an interview.

They spent a solid unpaid year — nights, weekends, holidays — shooting on a shoestring budget of $43,000. About 60 people made small contributions because they believed in the project or saw it as a way to memorialize loved ones; a handful of larger donors wrote checks for a few thousand dollars.

Accordingly, the film relies frequently on stock photos (soaring hawks, flickering candles) and soaring soprano voices. “We didn’t want to scare people. We wanted to inspire them to think, to talk and to act,” Mr. Bernhagen said. But while it may not be high art, “Consider the Conversation” provides moving narratives and important perspectives.

And its two producers, who initially had no idea how to place their work on public television but knew they wanted it to be viewable at no cost, can chalk up some successes. Their labor of love aired on West Virginia public television stations on July 2; it will run on New Hampshire Public Television on July 7 and 8. By August, it will have been shown on public television stations in central Michigan, Colorado, Indiana and New Mexico, and in Chicago and San Francisco.

For an updated screening schedule and more information, go to the filmmakers’ Web site, ConsidertheConversation.org.

Personal Decisions Matter at End Of Life

The Republican
Wednesday, April 27, 2011

When family members take on the responsibility of caring for a loved one nearing the end of life or are called upon to make health-care decisions on behalf of their loved one because he or she is unable to speak, suddenly the enormity of this responsibility looms large.

What would my loved one want? Do we continue with yet another medical treatment?

Do we withhold high-tech life support? Do we want intensive medical interventions that may prolong suffering?

How far do we go? How do we assure quality of life as the end nears?

Of primary concern is the question, “How do we honor those we love, respecting the dignity of their values and preferences for life care?”

As an individual, your decisions matter. This is especially true when it comes time to examine how you plan and prepare your health-care and quality-of-life decisions as they communicate your wishes for end-of-life treatment.

Did you know that nearly 70 percent of Americans say they would rather die at home, surrounded by family members? Yet in Massachusetts this expectation is reversed; 70 percent die in nursing homes or in hospitals, often spending their last days hooked up to high-tech life support machines. Fewer than 25 percent die at home.

Recently, family members caring for their dying mother at home related how grateful they were because their mother had made her wishes known and clearly communicated what she desired and wanted.

“She made it easy for us because all we have to do is follow what she wanted,” they said.

This reality does not remove the gamut of emotions that accompany them as they tend to their mother. But it does remove the struggle of having to decide on their own without the assurance their decision would in fact really be what their mother wanted.

They do not have to worry about the guilt, remorse or uncertainty that comes when loving guidance is not clearly communicated.

Do yourself and your loved ones a favor. Be willing to enter into conversations about what health-care choices you would desire if you were unable to speak for yourself. Convey your wishes through an advance directive. Advance directives enable others to know in advance what your choices are.

A “health-care proxy” documents the person you select to be your voice when you cannot speak for yourself.

A “living will” documents what kind of medical treatments you would or would not want at the end of life.

Quaboag Valley Hospice is available to offer assistance by providing literature and tools to assist with thoughtful reflection on health care choices. They are also available for group presentations and additional information as needed. They may be reached at (413) 283-9715.

Most importantly, remember and affirm that your decision matters. Take the time to reflect on what you desire for your health care and what quality of life means for you. Then offer your gift of love by adequately communicating your choices so your wishes and life may be fully honored.

The Rev. Domenic K. Ciannella, an Episcopal priest, is hospice chaplain with Quaboag Valley Hospice of Wing Memorial Hospital in Palmer. He is also certified as a grief recovery specialist and is well versed in crisis intervention and pastoral care.

Palliative Care and Hospice Care: Transforming the American Way of Dying (In Iowa, If Not in New York) Part 1

by Maggie Mahar
November 24, 2010

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.

Shame? Yes.

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.

November is National Hospice and Palliative Care Month: Celebrating Patient-Centered Care

As part of our mission, Compassion & Choices is committed to the promotion and development of patient-centered care. Education about the incredible value of hospice and palliative care for patients and families is a key part of informed consent: part of our Patient Centered Principles, which recognizes that people must have comprehensive, candid information in order to make valid decisions and give informed consent.

It’s been a milestone year for awareness around palliative care. From studies that show early palliative intervention helps cancer patients to live longer to Dr. Atul Gawande’s candid articles and interviews on the struggles talking with terminal patients about death, we are watching a blossoming of patient empowerment.

As part of National Hospice & Palliative Care Month, Compassion & Choices is also celebrating the passage of Right-To-Know Acts in California and New York.  These laws make it much easier for patients to obtain information on all of their legal end-of-life options.   These victories bring the total to 5 states (including Oregon, Washington and Montana) to embrace laws around end-of-life choice.

There’s still much to do. We know that interventions designed to improve doctor-patient communication still have a lot of room for improvement. And there are still many states that don’t have patient-centered health care laws on the books or as part of medical standard of care.

We’ll be highlighting much of the good stuff on hospice and palliative care this month at Twitter and Facebook. Join us!