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Palliative Care Information Act at the Bedside: Achieving Truly Informed Consent

"informed reflection"

"informed reflection" by zen on flickr

New York has a new law, called the Palliative Care information Act (PCIA). It’s simple, and short, and outlines a specific standard for doctors who care for patients at the end of life.

The PCIA says when a disease has advanced to the terminal phase and a patient is unlikely to survive 6 months, doctors must offer to inform them of this, and advise them of available treatments aiming to bring comfort, not vanquish disease. At this point the disease is beyond reasonable hope of vanquish, and the symptoms may escalate to the point of intolerance. Patients have a right to know when disease-specific treatments offer only a miniscule chance of prolonging their lives for a few weeks or months. And they have a right to know palliative therapies could make them feel a lot better for the time remaining.

Before the PCIA became New York law, they had no such right. I’d like to explore what this means for patient care and decision-making, with a concrete example. I hope to reveal and how stunning a reform we might expect.

In November 2010 Frontline aired a documentary called Facing Death. Filmed in the bone marrow transplant unit at Mount Sinai Hospital in Manhattan, it shows intimate scenes of distress, confusion and grief. It reveals chilling examples of physicians following an imperative to attack disease, however miniscule the likelihood of success and irrespective of associated suffering. It exposes aggressive treatments as life-threatening in themselves, and shocking acceptance of individual suffering as necessary collateral damage in Medicine’s larger war on cancer.

One episode remains seared in my mind. When I saw it, I thought, “This must change.”

The patient’s name was Norman, and he was dying from complications of his transplant, as 25-30% of patients do. Kyimar, his life partner, was constantly at his side, and her distress was palpable. She approached Karen, his doctor, to relay Norman’s request that aggressive treatment be stopped. Karen went to the bedside to clarify the situation. The following conversation ensued:

Karen, leaning over Norman: “What’s happening?”
Norman: weakly, barely audible, “I’m scared.”
Karen: “If you ever need a ventilator — you want to tell me something about that?”
Norman: no response
“If something happens and you have trouble breathing, do you want to be put on a respirator to help you breathe?”
Norman nods weakly.
Karen: “You do? Is that a yes?”
Another weak nod.
“Alright. OK.” Karen goes on: “If you’re tired and you don’t want us to do this anymore, that’s OK with me. But ya gotta let me know. I don’t want to put you through procedures that you don’t want to go through. But I don’t want to not do the things that are right in terms of trying to help you get better.”

Kyimar, who has been at Norman’s bedside 24 hours/day for two months tries to protest that Norman is consistent in his desire to sign a “Do Not Resuscitate” order. Karen tells her he’s probably ambivalent.

What happened here? The physician apparently believes she obtained informed consent for cardio-pulmonary resuscitation efforts, intubation maintenance and indefinite ventilator support. But it seems to me Norman’s consent was uninformed and coerced. Would a frightened, dying person ever reject the only assistance his doctor offers if gasping breathlessness were to seize him? Didn’t Karen tell Norman a ventilator was the only “right” course?

When Norman subsequently deteriorates,he’s moved to the ICU. After two days, his sister Phyllis, asks “Is my brother dying?” and confronts the inevitable. Phyllis receives sidelong glances and the question turned back at her. “What do you think, Phyllis?” Norman spends 4 days in intensive care before he dies.

Today the PCIA is in place and a dying patient’s consent to treatment must be truly informed. Karen would now be obligated to offer to share with Norman the same information she shares with her colleagues — she has never seen anyone in his condition survive. Norman is dying. When she talks with him about alternatives to aggressive resuscitative techniques, today she must also reveal that palliative treatment can ease his anxiety, breathlessness and pain if his condition worsens. He need not be scared that choosing to stop treatment would bring even more suffering than he currently endures. She must tell him he could leave the hospital and die at home with hospice care, or move to a palliative unit in the hospital. Doctors must now communicate that palliative support would be just as “right” for Norman as passing a tube into his lungs and adding procedures and machines in the intensive care unit.

If the PCIA diminishes the end-of-life agony of even one patient like Norman, it would be worth the effort of passage. But my guess is, empowered with concrete knowledge of their prognosis and palliative alternatives to invasive treatment, thousands of New Yorkers each year will opt for gentle, peaceful dying. And what a stunning improvement that will be!

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Barbara Coombs Lee is President of Compassion & Choices, a non-profit organization dedicated to expanding and protecting the rights of the terminally ill. She practiced as a nurse and physician assistant for 25 years before beginning a career in law and health

Since then she has devoted her professional life to individual choice and empowerment in health care. As a private attorney, as counsel to the Oregon State Senate, as a managed care executive and finally as Chief Petitioner for Oregon’s Death with Dignity Act, she has championed initiatives that enable individuals to consider a full range of choices and be full participants in their health care decisions.

Ms. Lee took her undergraduate education at Vassar College and Cornell University and obtained advanced degrees in law and medicine from the University of Washington and Lewis & Clark College. She holds an adjunct position at the University of Washington School of Public Health and Preventative Medicine and is a member of the Oregon State Bar.

She has been interviewed by NBC News, CNN Crossfire, 60 Minutes, McNeil Lehrer News Hour, NPR, The Today Show, and Bill Moyers’ “On Death and Dying” among others. She has also testified before the US Congress on end-of-life issues.

She has been recognized with a national health Policy Fellowship, Boeringer Ingeheim Foundation, an American Jurisprudence Award for outstanding performance in the study of medical law and a National Health Lawyers Association scholarship for outstanding student achievement.

Ms. Coombs Lee has been a presenter at programs sponsored by American Bar Association, Older Women’s League, American Pain Society, Oregon State Bar, Americans for Better Care of The Dying, American Associations for the Advancement of Science, End of Life Concerns, and the American Pain Society. She spoke at the World Federation Right to Die conference in Zurich, Boston and Brussels.
Her audiences have included the Oregon Gerontological Association: the California Nurse Assembly & Education Conference. Her debate “Doctor Assisted Suicide: Compassionate Alternative or Murder” with James Bopp, Jr., was produced by “Justice Talking” a project of the University of Pennsylvania’s Annenberg Public Policy Center
for Public Radio.

Since Gonzales v. Oregon, the lawsuit defending the Oregon assisted-dying law, Ms. Coombs Lee has been interviewed by many of the nation’s newspapers. She has been quoted in the New York Times, The Washington Post, The Chicago Tribune, and on NPR’s All Things Considered. Recently, The Harvey M. Meyerhoff Lectures on Ethics at the End of Life hosted her presentation “Local Medical Practice and the Federal Threat” at Johns Hopkins University.