End-of-Life Choice, Palliative Care and Counseling

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Right-To-Know Laws Empower Patients To Make Their Own End-Of-Life Decisions

By Kathryn Tucker
Director of Legal Affairs for Compassion & Choices

Compassion & Choices is dedicated to improving care and expanding choice at the end-of-life. We believe that patients are able to make the best choice for their care when they are fully informed of all end of life options. We support the enactment of policies and laws that ensure comprehensive counseling regarding end of life care options, including laws referred to as “ Right to Know” laws.

Right to Know laws ensure that patients can receive information about all of their legal end-of-life options. These options generally include refusing or directing the withdrawal of life prolonging care(such as a ventilator, feeding tube, cardiac device, medication etc), voluntary stopping of eating and drinking (known as VSED), palliative care, aggressive pain and symptom management, including palliative sedation, and where its legal, aid in dying.

Two states in the US have enacted Right To Know laws: New York and California. The California law requires physicians to provide counseling if the patient requests it. The New York law requires providers to offer terminally ill patients such counseling.

The right of patients to make their own informed end-of-life decisions, and to have those decisions honored, is a basic human right. Dying patients deserve to have the broadest range of choice and care, and the autonomy to decide what they want for themselves. Unfortunately, there’s still much to do to ensure that patients have the information they need to make informed choices.

A study published in the New England Journal of Medicine shows that despite an ethical and legal consensus that patients have the right to refuse life-prolonging treatment, dying patients in US hospitals often receive unwanted care. Terminally ill patients rely on their health care providers to share timely and informative information on their care. Unfortunately, there’s often a lack of communication between health care providers and their terminally-ill patients. For example, many patients benefit from being referred to hospice earlier rather than continuing curative treatment. But nearly two-thirds of dying Californians receive hospice services for less than one month, well below the national average.

Information and counseling regarding end-of-life care options is essential for terminally ill patients and their families. It can help the patient weigh all of their options and make an informed decision that best meets their needs and is consistent with their values and beliefs.

Dying patients deserve information about all of their options. Right to Know laws facilitate this empowerment.

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.

California.

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.

Montana.

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.

Palliative Care Information Act will allow for better end-of-life choices

By David C. Leven
August 7, 2010
LoHud.com

The end of life is a difficult time for patients, their families, physicians and other health-care professionals involved with patient care. It is also an important time for discussions to take place between physicians, willing patients and family members to determine the best course of care for the patient during the last chapter of patients’ lives.

Having these discussions empowers patients or health-care agents or surrogates to make informed decisions about treatment in accordance with the patient’s goals of care and wishes. Unfortunately, despite the fact that most patients want to have these conversations with their physicians, recent studies reveal that these discussions often do not occur. This results in unwanted treatment and diminished quality of care.

A bill that has passed both houses of the state Legislature will, if signed into law, correct this problem. The Palliative Care Information Act is designed to ensure that patients diagnosed with a terminal illness, or decision-makers for those patients who have lost decisional capacity, will have the opportunity to receive information and counseling, if desired, regarding palliative care and end-of-life options appropriate to the patient. This includes prognosis and risks and benefits of the various options.

When dying patients receive information and counseling about their palliative and end-of-life care treatment alternatives, the quality of their end-of-life care is better than when discussions do not take place, their wishes are more often respected and they are referred to hospice sooner. Unfortunately, despite all of our efforts in recent years, hospice referral rates have not changed much and patients are referred much too often, if at all, only when close to death. This is in part due to the lack of discussions between physicians and patients until patients are very near death. The median length of stay in hospice, which provides excellent end-of-life care, is, sadly, only 17 to 19 days, with 33 percent enrolled for just eight days or less and another 33 percent enrolled for 31 days or less. The Palliative Care Information Act should ensure that timely hospice referrals are made.

With some 8,000 people dying each year in this region, the bill could have a positive impact on the quality of deaths of thousands of our residents yearly. Introduced by the chairs of the Assembly and Senate health committees, the bill was also co-sponsored by local Assembly members Amy Paulin, D-Scarsdale, and Sandra Galef, D-Ossining. The Palliative Care Information Act (S. 4498, A. 7617) should be approved by Gov. David Paterson. Support the bill by writing him at Executive Chamber, Albany, N.Y. 12224.

David Leven, a resident of Pelham, is the executive director of Compassion & Choices of New York, Pelham. Learn more at www.compassionandchoicesofny.org.