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

Posts TaggedPalliative Care Information Act

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!

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

Five States Give Patients Choice

“There’s nothing more we can do.” For too long, for too many, medical professionals have used these words when they believe they cannot cure their patients. Facing, as each of us must, the nearness of death, terminally ill patients too often speak of abandonment by their doctors. Trained to cure, most doctors remain untrained in caring for those they cannot cure. For decades, when patients sought support and information and found their caregivers uncomfortable with their quest, Compassion & Choices has stepped into the breach.

It is unacceptable to abandon dying patients to their agony. Compassion & Choices’ End-of-Life Consultation Service is, thousands of times each year, the non-judgmental friend who listens, gives counsel and information, and never abandons patients or their families. In my experience at the bedside, I learned that merely having a conversation with someone about anticipatory suffering, how that might be managed or might be escaped, often transforms their attitude toward life and their remaining time in the material world. Time and time again, we see spirits lifted. People reengage with life. The family calls us and says, “You won’t believe the change in Dad. He slept through the night. He ate breakfast. He told a joke. For whatever time is left, we have Dad back because Dad feels like a person again. He feels as though he has regained his ability to chart his own course.”

But as I have said our mission is not only to provide service to the few we can reach directly. We seek to transform the practice of medicine to insure a future where provider do not abandon their patients.

Now, thirty years after one of predecessor organizations was founded, we are beginning to see signs of that transformation. Today, five states have substantial legal protections for patients facing the end of life.


Two years ago, Governor Arnold Schwarzenegger signed the California Right-to-Know Act. We championed this law to address a major concern for terminally ill patients and their families, who often face the most important decision of their lives — how to live their final days — without understanding their legal rights and medical options. When a patient diagnosed with a terminal illness asks a physician, “What are my choices?” the Right to Know Act instructs the doctor to answer the question. Knowledge empowers patients and gives them comfort.

New York.

Last month, New York followed with “Right to Know” legislation, even stronger than the law in California, on which it was modelled. Unlike in California, the New York Palliative Care Information Act places responsibility to start the conversation on the doctor or other health care provider. This is a huge victory for patient-centered care, and will protect patients who are reluctant to pose difficult questions to their doctors. Beyond New York’s own large population, the medical schools and hospitals of New York are also the training ground for much of the nation’s doctors.

Washington and Oregon.

The citizens of these states passed initiatives that made physician aid in dying an accepted, legal part of end-of-life care. The question so many want to ask when they learn they are terminally ill is, “If it gets too hard for me to bear, is there something I can do to escape?” In both these states, terminally ill, mentally competent adults know they can ask their doctor for a prescription for medication they can, if they choose, ingest to achieve a peaceful death. Hospice workers in Oregon testify after twelve years’ experience with the Death with Dignity law, while few actually consume life-ending medication, the quality of conversations between physicians, patients and families has greatly improved. Under the law, Oregon has continued to be exemplary in its access to hospice.


On December 31st, 2009, the Montana Supreme Court ruled terminally ill Montanans have the right to choose aid in dying under state law. Compassion & Choices brought this case, continues to fight against lawmakers who would overturn it and is working to make sure every Montana doctor, nurse, social worker and citizen understands this newly-affirmed choice.

Five states, as diverse as they are far-flung, have taken steps to ensure their people will not feel abandoned and disempowered at the end of life. Five states where patients receive the power of information, choice and autonomy. Medicine is changing, as these laws give dying patients the ability to steer their own course. These five states provide a far better chance for “Dad to feel like a person again,” and for whatever time they have together, the family has Dad back.

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.

New York’s Palliative Care Information Act: A Sea Change in End-of-Life Care

Word came Sunday night from Compassion & Choices New York that Governor Paterson had signed our bill, the Palliative Care Information Act, (PCIA) and it would take effect in 180 days. Hooray!! We hope and trust this event marks the beginning of the end for endemic medical habits that cause so much suffering at the end of life. If we had been in the office, we would have lifted a toast of bubbly!

A simple bill, it instructs New York doctors and nurse practitioners to offer terminally ill patients information on hospice, palliative care and appropriate end-of-life options. Patients may accept or decline the offer, but at least they do not bear responsibility for starting what may be the most important conversation of their lives.

The bill, developed by Compassion & Choices in concert with our New York affiliate, passed the Assembly and Senate by large margins, but the governor’s signature remained in doubt because the Medical Society of New York pressed him for a veto. The Society’s inane claim that doctors who ask if their patients want to talk about palliative care, won’t also “fight” for their patients or “go the extra mile” to “aggressively recommend treatment options” defies both common sense and medical research.

Study after study disproves such muddled misconceptions and affirms the enormous value of conversations about end-of-life care. Just today the New England Journal of Medicine reports that lung cancer patients who receive palliative care actually live three months longer than similar patients not receiving such care.  The medical society’s arguments perfectly demonstrate how the mindset of doctors can trap their patients in a state of ignorance and subject them to escalating rounds of futile, burdensome and even life-shortening therapies.

David Leven, Executive Director of Compassion & Choices New York, urged these arguments on the governor, along with New York’s Hospice and Palliative Care Association and many influential physicians. Now, at last, patients nearing the end of life will receive an offer to discuss it. Some will decline the offer. Many thousands will accept and use the information to negotiate a death that honors their life and leaves memories of peace and comfort for the loved ones with them at the end. The PCIA will do what $100’s of millions in professional education did not accomplish. It will change the medical culture’s imperative to never speak of death and offer any treatment, no matter how remote the chance for success.

And not a moment too soon. New York and the nation recently got an insider’s look at end-of-life decision-making from a heart-wrenching article by Dr. Atul Gawande in the New Yorker. It displayed a catalogue of suffering from endless aggressive treatments visited upon willing and uninformed patients as doctor after doctor failed to muster the courage to discuss imminent death. Perceptive readers of the article might have noted the relative absence of informed patients, asking critical questions about side effects of treatment and chances for success. With no offer to discuss options other than more chemo, surgery or radiation, patients assume there are none.

PCIA will change those assumptions, but it will not force frightening facts on unwilling patients. The bill is clear that patients may decline the offer of information and that ends the discussion. Patients whose wish is not to know will still get that wish.

Many readers may recall the disturbing end-of-life story of Dr. Desiree Pardi, a well-known palliative care specialist at Weill Cornell medical center. As reported, Dr. Pardi requested and even demanded the most brutal cancer treatments right up to her death. Throughout her ordeal she willfully maintained a state of ignorance about progression of her cancer. She directed that all information go to her husband, referred to herself as the “queen of denial” and suffered a miserable death.

Nothing in the PCIA will influence those who prefer denial and ignorance to choose a different course. But it will empower the thousands more who welcome an opening for the conversation they secretly yearn for. Those are likely to absorb what they hear eagerly and make informed, well-considered judgments about the unfolding of the last chapter of their lives. Greater numbers will choose concurrent palliative care or hospice services delivered in their own homes. Many will find comfort knowing unbearable symptoms can be addressed with palliative sedation, and they can choose to discontinue treatments like dialysis or artificial ventilation at any time.

Compassion & Choices believes knowledge is power, and PCIA empowers patients to chart their course from a base of understanding.  How well it accomplishes this depends on regulations and implementation guidance from the New York State Palliative Care Education and Training Council.  We hope that body grants patients the full measure of empowerment PCIA promises and helps countless patients find their own path to a peaceful death when medicine offers no cure.