End-of-Life Choice, Palliative Care and Counseling

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What Doctors Need to Learn About Death and Dying

by Karen M. Wyatt, MD
Huffington Post
December 6, 2012

“The old man and the young woman sat across from one another stiffly perched on plastic chairs, staring down at the floor — doctor and patient. The tension in the room, exaggerated by the silence between them, was almost unbearable. Then the patient, stroking a trembling, emaciated hand across a hairless scalp, spoke haltingly, “Doctor, promise me I’m not going to die.”

According to a recent post in the New York Times by columnist Jane Brody, this type of interaction with a terminally-ill patient creates occupational distress for many doctors who are not equipped emotionally to handle such a difficult situation. She states that doctors who are unable to cope with “their own feelings of frustration, failure and helplessness … may react with anger, abruptness and avoidance” toward their patients who are dying. When this occurs, doctors may recommend futile treatments to patients at the end of life because they cannot connect with those patients on a human, suffering level and have nothing else to offer them.

The article touts mindfulness meditation, a practice recommended by palliative care specialist Dr. Michael Kearney, as a solution for discontent and disconnected doctors. I wholeheartedly agree that mindfulness meditation can be a very helpful practice for calming anxiety and learning to be present. However, I believe that this problem — doctors who find themselves unable to cope with perceived failure when a patient is dying — requires a deeper and more fundamental solution: Doctors need a new understanding of death and, therefore, life. More

Uninformed Consent, Unshared Decision-Making in the ICU

By Barbara Coombs Lee

Imagine yourself the son or daughter of a grievously ill octogenarian. Your mom or dad suffered a catastrophic event and has been in an ICU, barely conscious, for two weeks. You understand organs are shutting down, but you struggle to understand the medical jargon or the purpose of tubes and machines attached to every orifice. You and your family have kept a steadfast vigil at the hospital, and today the doctors called a meeting to talk with the family.

The family is desperate to understand what is happening and learn what lies ahead. The doctor needs the family to authorize a treatment plan. Will you learn how close your loved one is to death? Will the doctor learn their end-of-life wishes? Are there options and difficult decisions to be made? The legal standard for these conversations is that the family consents to treatment after being fully informed of alternatives, risks and benefits of each. The medical standard is that critical treatment decisions are not unilateral, but shared by the patient or surrogate and the doctor.

Sadly, informed consent and shared decision-making, the twin pillars of patient-centered healthcare, aren’t the rock-solid structures we would hope for. They are subtle, fragile fragments, often half-buried and overlooked in a heap of technological rubble. It’s a doctor’s job to dig them up and erect them, and many are not so inclined. That’s the lesson of a new study in the Journal of Intensive Care Medicine.

It is well established that many dying patients endure excesses of torturous treatment in the intensive care units of America. Tubes, machines and other contrivances can take over in clear violation of previously expressed wishes. Advance directives declining such treatments routinely get ignored. Three years ago I blogged about a bloated and misguided medical-industrial complex that tortures patients, and called it a national tragedy. I’m sorry to report not much has changed since then. More

RIP Gus Reichbach, a true champion for justice

Our friend Gus Reichbach died this week. We at Compassion & Choices met him about a year ago, when he was eager to tell the story of his battle with pancreatic cancer. He had already survived more years of brutal cancer treatment than one would think possible. In spite of weakness and pain he still dressed smartly and took his place on the New York judicial bench each day. Dedicated to the justice system, he preferred to tackle the pressing matters at court than succumb to the malignancy attacking his abdomen.

Gus was a campaigner for social justice in many arenas, and as his life waned he adopted two new passions for his advocacy voice. One was medical marijuana, to which he attributed his appetite, strength and longevity. The other was end-of-life choice, which he hoped to exercise if death became imminent and suffering intense. He visited the Dr. Oz show with us, expressed his view on aid in dying and displayed his characteristic dignity and intellect. Who could argue with such a clear, compelling and compassionate mind?

Goodbye Gus. You were a gift to humankind, a force for justice and an uncommonly courageous man.

Death Phobia Prevails

Hospice and Palliative Care are “Not About Dying”

Last week’s “Heights of Compassion; Bridges to Choice” Conference in Chicago was a stunning success. Participants relished the opportunities to gather information and gain tools for personal empowerment and community activism. Several speakers spoke to our society’s reluctance to acknowledge death, and made the same point in different ways.

Teacher and author Stephen Jenkinson called our society “death phobic and grief illiterate,” with healthcare professionals among our most vigorous enablers. He accused palliative care and hospice professionals of predictably “catering” to death phobia whenever it shows up. I spoke of the marketing to seniors: what I called a “sex on the golf course” message.

As if on cue, articles appeared immediately following the conference to prove our point. On July 3rd the Associated Press reported on hospices disavowing their role in dealing with end-of-life experiences and losses.

Robin Stawasz, family services director at Southern Tier Hospice and Palliative Care in upstate New York told the reporter hospice isn’t about tending to the dying at all. No, “we come in and help people go golfing or go snowbird down to Florida, or go out to dinner several nights a week. We help them get to the casinos on weekends,” she said. “This is not getting ready to die. This is living — living now, living tomorrow, making the best possible life with what you have.”  An AARP blog reported gleefully that this is “just the beginning,” as hospices “diversify their services” in preparation for the eventual needs of aging boomers

One of our conference plenary sessions featured a dialogue between Rebecca Kirch from the American Cancer Society and the Center to Advance Palliative Care (CAPC), and Compassion & Choices board member David Muller. David chairs the Medical Education department at Mount Sinai School of Medicine and attends at the Hertzberg Palliative Care Institute. The topic was reframing the national conversation from “death and dying” to “quality of life.”

Rebecca’s organization wants more patients to access palliative care. They commissioned public opinion research to give the palliative care community a roadmap to communicate more effectively with consumers and policymakers on the benefits and future direction of their field. Unsurprisingly they found people shy away from being reminded of their mortality. Apparently the CAPC decided the best plan is to disavow any real association with, or focus on, the end of life. Her presentation described advantages of the new, upbeat goal of lifting the “quality of life” throughout an illness, from diagnosis to … well, to something “not death.”

David followed Rebecca’s talk with an astute analogy. He described a practice among some established physicians of rebuking insurance coverage and treating only patients who pay with cash. This alarming behavior, he said, was a growing trend in New York. These physicians built their practices on healthcare insurance payments, only to cast insurance contracts aside once they assembled sufficient loyal and wealthy patients. They owe their careers and livelihood to insurance, but outgrew their dependence on it.

David’s point is that palliative care as a medical specialty grew from hospice, which arose to meet the needs of patients facing the end of life. Hospice promised not to abandon these patients or torture them with fruitless treatments. They declared dying patients deserve care aimed at comfort, not cure. But now, as some doctors turn their backs on insurance, some hospices and palliative care leaders turn their backs on death and dying. They can’t be bothered with the arduous task of helping America overcoming its death phobia and grief illiteracy. How much easier to take the quick gratification and join the phobic chorus.

Twenty years ago there was no such thing as medical accreditation in palliative care. Death and dying brought palliative care to the dance of medical specialties. Now that palliative care doctors have learned the steps, they believe they deserve a more attractive dance partner. First palliative care left death standing against the wall.  Now hospice looks to do the same. Who will ask death to dance?

We at Compassion & Choices will, of course.  Because we have learned over and over that only death — only an acute awareness of our mortality — can teach us the joyful, authentic, intensely human dance of life.

“Peace of mind is what this movement is really all about.”

Day two of the Compassion & Choices Conference 2012 is underway, with a fantastic set of speakers on the Family Perspectives Panel.

TV news correspondent and author Betty Rollin discussed their family’s experience around her mother’s death, which Rollin described as a “grateful and graceful” death.  Rollin’s mother died in New York, where aid in dying isn’t legal. Rollin’s family was unable to have support for her decision to take medication to die, so it was up to the family to provide that support for their mom on their own. Betty Rollin stated that she believed her mother would have lived longer if she could have accessed legal aid in dying as she would have had the support of professional medical staff when making her choice.

The family panel also included Lois Hansen, a human rights activist and early supporter of Compassion & Choices. Her husband Alan used aid in dying to achieve a peaceful death in their home. National spokesperson Neil Rudolph was also on hand, discussing his family’s own struggle with his parents eviction from their assisted living facility after they chose to voluntarily stop eating and drinking (VSED).

A lively and informative Q&A followed the panel. Audience members inquired about experiences around the consideration of religious convictions, family needs and opposition from friends and extended family around end-of-life choice.