End-of-Life Choice, Palliative Care and Counseling

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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.

Good-bye Elizabeth Edwards: Thank you for Lighting the Way

Still recovering from last week’s distressing Frontline revelations of how life ends for cancer patients in the intensive care units of New York, I feel enormous gratitude to Elizabeth Edwards for showing us how to meet an imminent death with grace, courage and wisdom.

What a contrast between the sense of darkness, denial and disaster embedded in those hospital patients and their families, and the vivid celebration of life and love that surrounded Edwards as she died among loved ones, in her own home. What a gift to see her carefully take her leave, imprinting memories on friends and children to inspire and guide them their whole lives.

While there was a fight to win, Mrs. Edwards fought hard. But unlike the dying patients in the Frontline piece, medical science served her needs, not the other way around. While the Frontline doctors asserted that long-shot, dangerously intense treatments are to be endured as what “drives medicine forward,” Edwards’ physicians candidly advised her further treatment would be “unproductive.”

Thus, medical science released her to her own best judgment. Elizabeth Edwards possessed the intellect, stature and courage to negotiate that release. The choice of dying in peace and comfort should not be the exclusive domain of those with money, power and negotiation skills. Hospice, the great idea almost entirely absent from the Frontline piece, should be the treatment of choice for everyone in the situation Edwards faced.

CNN noted this well. They quoted Dr. David Casarett, of the University of Pennsylvania. “People in hospice don’t want to die. They want to live, and they want to live well,” he said. “They want to use whatever time they have to live the best way they can. I don’t think it’s giving up. It’s making a careful choice. The easiest thing is to go after treatment after treatment, and say yes to whatever gets offered next,” Casarett added. “The bravest thing is asking yourself what’s important, who’s important, what’s best for you and your family and choosing hospice that way.

Elizabeth Edwards did all that in spades. She understood Dr. Casarett’s words, their wisdom and their promise of hope: “Throughout my life, both personally and professionally, I have had the opportunity to see how people have been affected by illness and loss and the role the healthcare system may have played as they dealt with change in their lives. I also know that people can find a great deal of hope even in the most challenging of life’s situations. Hospice and palliative care professionals support and care for people at a time when hope can be hard to find.”‘

When hope of conquering cancer becomes vanishingly small, another hope arises. This is the hope of dying well, dying gently and in comfort and peace with loved ones close. Elizabeth Edwards hoped for that and achieved a great success in making it happen. May her lesson help light the way and heal our broken manner of dying in America.

Dying patients should have the right to make informed choices

Guest blog by Audrey Roll-Shapiro of Bellingham, Washington. Audrey and her family were not informed about Washington’s Death With Dignity Act until her husband Norman endured an agonizing death.  Their story first appeared in the Bellingham Herald.

My husband, Norman Shapiro, died from esophageal cancer at our home on April 21, 2010. He was 88 years old and was a revered father, stepfather, uncle, and member of the Bellingham community.

Norman was diagnosed with cancer in September of 2009. Although he tried chemotherapy and radiation, there was no question that his cancer would prevail. As his health deteriorated, we accepted that death was near, and Norman became a patient of Whatcom Hospice, which is owned by PeaceHealth, the Catholic health care system that also owns St. Joseph Hospital. He wanted to be kept as comfortable as possible, to have his pain managed, and to die with dignity.

Although Whatcom Hospice’s caring, attentive staff did what they could, Norman still had a bad death. It was clear to me, my daughter, and his niece, that he was suffering tremendously, and we were all traumatized by watching helplessly as he died a slow and agonizing death. Not once did any Whatcom Hospice staff mention that Norman had other options, such as palliative sedation (sedation to unconsciousness until death) or aid in dying under the Washington Death With Dignity Act (DWDA). I learned about the DWDA the day after Norman died.

Feeling betrayed, angry, and even more grieved, I wrote a letter to the director of Whatcom Hospice, and then met with him to find out why Norman and I were denied information about the DWDA. During our meeting, he said that the DWDA was “contrary to our values.” He also confirmed that it is Whatcom Hospice’s policy to not discuss the option of the DWDA, to not refer patients to other organizations that will, and to “not acknowledge the existence of Compassion & Choices of Washington” (877.222.2816, www.CompassionWA.org), the only organization in Washington that supports patients who want the option to use the law.

While Whatcom Hospice has the legal right to refuse to participate in a patient’s use of the DWDA, the law does not authorize withholding information necessary for patients to provide informed consent, one of the most important principles of medical practice. If a medical provider is opposed to the option, they have an ethical duty to refer patients to another source of information. In effect, Whatcom Hospice made Norman’s choice for him by failing to inform him of all of his end-of-life options.

Norman served in the U.S. Army Air Corps during World War II at Okinawa, Japan. When Whatcom Hospice imposed its religious and moral values on my husband, it trampled on the freedoms he fought to uphold.

Norman had a long-held belief in choice at the end of life; if he had been aware of the DWDA, I know he would have chosen it. My daughter and I believe it was wrong for PeaceHealth and Whatcom Hospice to put its faith-based, internal policies ahead of Norman’s right to make fully informed decisions about his end-of-life choices.

Audrey Roll is an expressionist artist who interprets the West with colorful painting and sculpture, often combining the two. Her pieces are in major collections including the Kennedy Center and the Kiplinger Collection in Washington D.C., and the Whitney West in Wyoming.

Medical Society of New York Fights Palliative Care Information Act Despite Mounting Evidence

The ink of Governor Paterson’s signature is barely dry on New York’s Palliative Care Information Act (PCIA), drafted and sponsored by Compassion & Choices and its New York affiliate, yet evidence mounts daily for its vast and dramatic impact on end-of-life care. I predict this bill will shift decision-making authority radically from physicians to patients, and dwarf the impact of the Oregon and Washington Death with Dignity bills that, themselves, sent tremors through Medicine over the last thirteen years.

The PCIA merely instructs physician to discuss prognosis with seriously ill patients and ask if they would like information on hospice, palliative care and appropriate end-of-life options. But this simple requirement runs counter to an endemic medical culture that keeps prognoses secret and imposes painful, intensive technology on uninformed, dying patients.

Evidence of woefully uninformed patients has been clear for years. In 2002 researchers reported in the Annals of Internal Medicine that even if patients with cancer requested survival estimates, physicians would provide a frank estimate only 37% of the time. These authors reported “In general, we found that the propensity to avoid frank disclosure was relatively homogeneously distributed among patients and physicians. That is, most types of physicians tend to avoid frank disclosure for most types of patients with cancer.” In 2008 only 16% of oncologists told researchers they would discuss a terminal prognosis, even “if my patients ask about it.”

The Palliative Care Information Act changes all that. The duty to offer information arises when the physician perceives a patient is likely to die within six months, with or without disease-focused treatment. Having an affirmative duty will force the analysis of prognosis, and prompt the conversation 83% of patients say they want.

I would remind anyone squeamish about state lawmakers telling doctors how to practice medicine that the Medical establishment is notoriously protective of its prerogatives of secrecy and dominance in the doctor-patient relationship. Organized Medicine does not willingly assign decision-making power to mere patients. We would not have the doctrine of informed consent were it not for courts asserting the right for patients to understand alternatives and risks prior to consenting to surgery and other procedures. The 1972 D.C. Appellate case Canterbury v. Spence, first set forth the duty to inform. We would have no standards for the scope of pre-consent information, were it not for state legislatures codifying informed consent requirements throughout the nation.

The Medical Society of New York apparently sensed a threat in the PCIA and vehemently opposed it. In an embarrassingly revealing letter to colleagues, Society president Leah McCormack deplores the destructive impact palliative care information will have on “a patient’s spirit.” Dr. McCormack asserts, “Mandating physicians to offer terminally ill patients information about end-of-life care options may undermine patients’ beliefs and convictions that they can prevail against the disease and could undercut their confidence in the course of treatment and in their physician.”

Recall the conversation Dr. McCormack rejects occurs only after the physician determines the patient will die within six months, regardless of choice of therapy. So it seems her preference would be to withhold prognostic information, raise false hope for cure and entice patients by promoting “confidence” in therapies of ever-diminishing benefit. All the while she would withhold information about palliative therapies shown to prolong life by an average of three months in lung cancer patients. And she would do this in the service of the patient’s ‘spirit’ — or rather, in the service of her particular beliefs about the patient’s spirit.

A physician presuming to know the needs of my spirit, and acting on that presumption, is a scary prospect. I think it would scare most patients, dying or not. And as if to underscore the legitimacy of this fear, last month’s Journal of General Internal Medicine includes a study entitled “How Well Do Doctors Know Their Patients?” Centering on health beliefs, it reveals doctors to be generally clueless about their patients’ beliefs and values. A sample of 29 physicians and 207 patients from 10 clinics demonstrates physicians’ perceptions of their patients’ beliefs are usually wrong, because physicians assume their patients’ beliefs align with their own.

All this research underscores the finding published three years ago in the New England Journal of Medicine that 40 million Americans receive care from physicians who don’t believe they are obligated to disclose information about medically available treatments they consider objectionable. One hundred million have doctors who feel no obligation to refer them to another provider for such treatments. Total sedation at the end of life emerged as one such treatment likely to be kept secret from patients. Compassion & Choices’ pursuit of laws protecting patients from such “doctors of conscience” began with that study.

This modest Palliative Care Information Act certainly has its work cut out for it. The habits, culture, presumptions and prerogatives of a powerful profession conspire to keep dying patients uninformed, even as they endure needless suffering from a futile, aggressive and brutal battle against mortality. As it happens, New York is exactly the place to start. Graduate medical education is big business in New York, where giant teaching hospitals establish medical practice patterns of a lifetime. At least one in six American physicians receives their training there. Now that training will include the duty to start a conversation about realistic prognosis, palliative care and end-of-life decisions. This gives me hope.

Everyday Elder Abuse

Tomorrow is World Elder Abuse Prevention Day. It’s a day to appreciate that elders in our society endure abusive behavior every day and to consider how we might remedy this deplorable situation.

We hear of instances in which families, caregivers or others physically assault or verbally abuse elders in their care. Whether these instances arise from criminal pathology, frustration or plain meanness, we should all be on the lookout for such abusers, report them to authorities and encourage punishment.

Compassion & Choices focuses on other forms of abuse — the ones most commonly and even routinely — inflicted on elders. These forms are rarely recognized as abuse and are never punished. I’m talking about the pain, torture and invasion of bodily integrity from “heroic” and futile medical procedures associated with end-of-life care.

Most elders in this nation die in acute medical facilities. Even those whose deaths are anticipated following a long battle with cancer, heart failure or lung dysfunction do not die in the peace of their homes. Even they, the long-time dying, must endure the cold mechanical interventions of intensive care. Often in violation of express wishes stated in an Advance Directive for Healthcare, our elders must bear insertion of tubes to measure arcane pressures, tubes to breathe, to siphon throats, to empty urine, to drain fluids, to administer food and fluids. They must submit to the constant clicking, humming, droning and ringing of the machines and alarms at their bedside.

Add to this scene severe and unnecessary suffering from inadequate treatment of pain. Add to this a rampant failure to acknowledge and palliate agonizing symptoms like breathlessness, itching, hiccoughs, nausea, dizziness, bedsores and draining wounds of surgery .

What emerges is a picture of widespread, systematic, Medicare-supported torture of our elderly, dying citizens. Shame, shame on us for using taxpayer’s money in this indefensible manner.

When an 85-year old man like William Bergman, dying of mesothelioma, moans in pain with every breath, as his daughter pleads with doctors to prescribe more effective pain medication, that is elder abuse. Compassion & Choices won a court judgment to that effect, the first of its kind, in 2001.

When an 82-year old woman like Margaret Furlong receives full cardio-pulmonary resuscitation in violation of her Advance Directive, and endures ten days of intensive care despite squeezing her son’s hand to communicate her desire to have her hands untied and machines discontinued, that is elder abuse. Yet when Compassion & Choices helped bring this case as elder abuse and failure to honor an advance directive, it was thrown out of court.

When medical providers encourage irrational hope in endless rounds of chemotherapy for advanced, end-stage cancer, that research indicates are unlikely to extend life but sure to degrade its quality, that’s elder abuse.

When institutions withhold vital information about medical practices like terminal sedation or aid in dying, which they deem immoral, and hold patients hostage to their own beliefs in the redemptive power of suffering, that is elder abuse, and abrogation of informed consent principles. Catholic facilities that enforce gag rules and bar conversations about legal aid in dying, even when a patient inquires, are doing just that in Oregon and Washington.

Compassion & Choices is not alone in naming such examples “abuse” and “torture” and citing them as human rights violations. International conventions, treaties and courts demonstrate an understanding of the veracity and gravity of such charges. Numerous internationally recognized principles address patient care and the right to bodily integrity.

The European Charter of Patients’ Rights for example sets out, “Each individual has the right to avoid as much suffering and pain as possible, in each phase of his or her illness. The health services must commit themselves to taking all measures useful to this end, like providing palliative care treatment and simplifying patients’ access to them.” Policies restricting opioid availability and causing patients to suffer unnecessary pain abridge the human right to be free of torture.

The European Committee for the Prevention of Torture and Inhuman or Degrading Treatment or Punishment, has stated, “[E]very competent patient…should be given the opportunity to refuse treatment or any other medical intervention. Any derogation from this fundamental principle should be based upon law and only relate to clearly and strictly defined exceptional circumstances.”

This year, let’s acknowledge our national habit of over-treatment at the end of life for what it is: elder abuse, torture and a violation of human rights. Let’s stop withholding information, ignoring wishes and inflicting elders with futile, painful treatment and unnecessary pain and suffering. And certainly, let’s stop using Medicare taxes to pay for this national scandal.