End-of-Life Choice, Death with Dignity, Palliative Care and Counseling

Posts TaggedNew York

Two Movements Approach the Tipping Point

After years of gains and setbacks, the national movement for same-sex marriage is enjoying a period of remarkable success.  Massachusetts and Connecticut became first adopters in 2004 and 2005 and that came after twenty years of advocacy. Turmoil followed, especially in California. But in 2009 three states (Iowa, Vermont, New Hampshire) approved same-sex marriage. New York followed last June, and now the Washington and Maryland legislatures have acted in quick succession.  Delaware’s governor predicts his state is not far behind.

It’s making me think about similarities between the movement for death with dignity and LGBT dignity. Like other movements for human liberty, seminal events mark a trajectory toward inevitable success.

1. It starts with consciousness-raising.  As human rights lawyer Sylvia Law describes, one day a light comes on. People experience their own private “Aha!” moment. Then more do, and multiple sparks of recognition illuminate the injustice for all to see.  In the 1970s LGBT advocates worked hard to muster light in the darkness of false assumptions, degradation and violence.

For end-of-life choices, common wisdom was that with death, comes suffering.  We’ve heard doctors tell a family, “We all have to suffer some, don’t we?”  In our movement sparks first fly when people witness end-of-life agony and indignity and think, “This is not right.” Grief magnifies outrage, and awareness dawns that American law and medicine fails us at life’s end.

2. Soon fear, shame and guilt no longer keep outrage in check. People in our movement share this with LGBT communities.  We all have stories of deaths of loved ones. Maybe we shrank from the bedside and let doctors continue with tubes, needles and machines long after any good could come of it. Maybe we heeded an urgent plea to increase the morphine and speed death’s advance. Or maybe we didn’t and feel guilty for that. Maybe Dad shot himself when he was dying of cancer and the family lives with that trauma.

Powerful forces conspire to keep talk of death taboo. We’re told it’s wrong to seek the relief of death when cancer’s final agonies take hold.  But telling our stories at kitchen tables, church basements and community gatherings turns fear into courage, grief into action. My most moving experiences come when we open a conversation about end-of-life choices, see pent-up emotion flood the room and see how eagerly people sign up for advocacy and public service.

3. The Vatican fights both movementsCatholic hierarchy uses its political power to oppose both movements. With hysterical doomsday rhetoric, it denounces gay and lesbian human rights as an “ideology of evil” and the movement for end-of-life choices as a “culture of death.”  To defeat Death with Dignity bills, local bishops have deployed their lobbyists and issued threats of shunning and denunciation from the pulpit to non-Catholic lawmakers and denial of the sacrament of communion or excommunication, to Catholic ones.  In a surprising turn of events, Roman Catholic leaders in Maine announced they will play no role in fundraising, staffing, advertising, or campaigning against marriage equality.

I hope Catholic leadership’s decision to stay its hand in Maine arises from a calculation of changing sentiment in society.  If Gays and Lesbians are beyond religious oppression it’s because they are no longer vulnerable to shame and guilt for who they are or the rights they seek. Today lawmakers are more likely to embrace their Gay and Lesbian sons and daughters publicly than abandon them in silence and vote against their liberty.

If the pattern holds, it won’t be long before lawmakers are telling stories of the tragically painful deaths they’ve witnessed, rejecting the rhetoric of shame and voting courageously to empower people with choices at the end of life.

NEJM: Letter to the Editor on Palliative Care Information Act

From the September 1, 2011 New England Journal of Medicine, a letter to the editor by Compassion & Choices President Barbara Coombs Lee:

To the Editor:

In their Perspective (May 19 issue),1 Astrow and Popp assert that New York’s Palliative Care Information Act was passed without “adequate consultation” with physicians. They bemoan physicians’ new responsibility to either share crucial decision-making information with their terminally ill patients or risk accountability for unprofessional conduct. As an advocate for dying patients, my organization, Compassion and Choices, pursues legislated mandates only as a last resort. The results of the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT)2 was the wake-up call that prompted a 10-year, $350-million push to educate physicians and coax them to inform patients about end-of-life options and to honor their final wishes. That Herculean effort spawned many new policy statements and a new subspecialty: palliative care. But the information most patients receive before consenting to treatment as death nears remains woefully inadequate. Dying patients cannot wait forever for physicians to grant them the tools of informed decision making about disease-focused and palliative treatments at life’s end. Astrow and Popp are correct in pointing out that information is just the first step in beginning a sensitive, intimate dialogue. But without an informed patient, a meaningful dialogue cannot even begin.

Barbara Coombs Lee, J.D., P.A.
Compassion and Choices, Portland, OR
[email protected]

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

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!

Living a Life, and Choosing When to Die

Letters to the Editor
July 14, 2011

Most of us would like to control the timing and circumstances of our deaths. Dudley Clendinen, who has A.L.S., has a plan to do so. He claims to have a way of ending his life that is “quiet and calm.” It appears to give him great comfort that he has the means to end his life if and when living becomes too unbearable. It also seems that this is a rational choice made after serious and thoughtful consideration.

Whether Mr. Clendinen will execute his plan is uncertain. Many dying people who obtain prescribed life-ending medicines (which they must take themselves) in states where aid in dying is a legally recognized option for the terminally ill never take the medicines.

Yet they and thousands of other dying people in those states are provided comfort knowing that this last-resort option is available. Every state should formally permit aid in dying for mentally competent dying adults.

Executive Director, Compassion
and Choices of New York

Pelham, N.Y., July 11, 2011


New law takes effect statewide for terminally ill

By Julie Sherwood, staff writer
Messenger Post
Posted Feb 09, 2011

Finger Lakes, N.Y.-A new law in effect beginning today requires doctors and nurse practitioners to offer terminally-ill patients information and counseling concerning palliative care and end-of-life options.

“Typically, patients are only referred to hospice two or three weeks before their death,” stated
Dr. Patricia Bomba, vice president and medical director of geriatrics for Excellus BlueCross
BlueShield. “This new law requires physicians and nurse practitioners to discuss palliative care,
hospice and all their other options earlier in the course of the patient’s illness.”

The New York State’s Palliative Care Information Act encourages discussions between patient
and physician about the goals for care and also the need for a Medical Orders for Life-Sustaining
Treatment (MOLST) form, as well as ensures optimal relief of pain and other symptoms and a
timely referral to hospice.

More information, at CompassionAndSupport.org