End-of-Life Choice, Palliative Care and Counseling

New York

New York’s Palliative Care Information Act: Flawed but Needed

by Robert A. Milch
Bioethics Forum

It’s been observed that the last thing today’s physicians need is something else to make them feel guilty, inadequate, or coerced. It shouldn’t be surprising, then, that there is some displeasure with implementation of New York State’s Palliative Care Information Act, which mandates that clinicians offer information or counseling about palliative care to “terminally ill” patients or their surrogates should they choose to accept it. Failure to comply with what, by fiat, is now deemed a standard of practice can be punished by fine.

As could be expected, demagogic statements about “death panels” and euthanasia have emerged, detracting from discourse with their shrillness. Opposition from the New York State Medical Society, which waved the bloody shirt of the doctor-patient relationship undermined – almost a pro forma response to regulation – has been disappointing to me and many others. More thoughtful and articulate responses have been made by physicians such as Astrow and Popp in the New England Journal of Medicine, who fear that “a legalistic solution is likely to prompt a merely legalistic response”.

The ills of the world will not be cured by legislation. But there are overwhelming data that the provision of palliative care and communication about it currently are inconsistent, inadequate, or untimely. The public and the medical profession long have recognized the unmet, ongoing needs for improved palliative and end-of-life care. Well-meaning advocacy and position statements, even ethical and professional standards, have proved inadequate in addressing the problems. The legislature, however ham-handedly one might view the action, has responded to nudge us toward an overdue correction. It seems incongruous that a profession advocating evidence-based practice might denigrate efforts to codify best practice standards.

Certainly the law is imperfect, and there are important concerns to be addressed and questions to be answered. Pragmatically, if this is the medical equivalent of another legislative “unfunded mandate,” how can institutions and practices support its application, and at what costs? How will compliance be monitored, and by whom – hospital staffs? The Department of Health? Are there quality measures to be applied, and if so what are they? Are legitimate claims for palliative care really dependent on the administrative definition of “terminal?” The list goes on.

The hardest work, though, will likely be twofold. First, we need to assure adequate resources and compensation of programs and trained personnel for palliative care services in the inpatient and outpatient venues, serving in both consultative roles and direct care. More important, however, we need to provide meaningful training for physicians and practitioners in the communication skills required to make discussions around palliative and end-of-life care substantive.

No more than a surgeon can perform an operation well having only read an anatomical atlas, so too this training needs more than didactics and PowerPoints. To be effective, education and training need be experiential, mentored, and constructively critiqued. Many medical schools and academic centers are offering models of such programs, but there is a need to create new ones for participants of disparate experiences and specialties, and that will be a challenge. But failure to do so risks having the worst fears realized – that is, that discussions about palliative care will be relegated to the checklist status of a smoking cessation referral.

Rather than threaten the doctor-patient relationship, these efforts stand to reinforce it in the noblest ways. For both doctors and patients, the efforts can deepen the understanding of an illness in a person as distinct from a disease in an organ, as well as suffering as meaningless endurance. Conversations can afford the opportunity to empathize and compassionately communicate concern while assuring ongoing care and nonabandonment, even as the goals of care change. For most, that should be viewed as reassuring, not threatening.

However flawed the New York law is, it gives impetus to begin to meet crying needs. It aims to change behaviors and systems with misaligned incentives that serve as obstacles to appropriate care. Doing a good job of discussing palliative care offers the chance to reclaim lost ground of professionalism and better serve our patients and their families. We stand to better meet our charge for the relief of suffering.

Robert A. Milch, M.D., F.AC.S., a pioneer in hospice care, is a physician at The Center for Hospice and Palliative Care, near Buffalo. He received the 2010 Hastings Center Cunniff-Dixon Physician Awards in the established physician category for exemplary end-of-life care.

Physician-Assisted Aid-in-Dying: A New Front in the Culture Wars?

Antol Polony has a great post up on the seven ponds blog about the battle for end-of-life choice.

A new front in the so-called “culture wars” may well be brewing. All the factors are there: a vast disparity of opinions reinforced by geographic and cultural segregation; passionately defended religious mores pitted against the social and economic motives of those who may not share them; and a rising swell of political and legal initiatives that will unavoidably challenge beliefs and impact thousands of lives. It has been several years since the court-ordered removal of Terri Schiavo’s feeding tube, which precipitated the largest media blitz concerning assisted dying since Dr. Jack Kevorkian’s “assisted suicides” in the 1990s, and it may not be long until an emotionally complex case in Washington, Oregon, or Montana, the three states where physician-assisted aid-in-dying is currently legal, initiates a similar media frenzy.

The aid-in-dying controversy has been debated since long before Jack Kevorkian. The first significant drive to legalize it came in 1906, and there have been many unsuccessful attempts at legislation and regulation throughout the 20th Century. In 1996 Oregon was the first state to successfully legalize physician-assisted dying, through Ballot Measure 16 and the Death With Dignity Act, co-authored by Barbara Coombs Lee, president of Compassion in Dying (subsequently Compassion & Choices). Oregon’s Death With Dignity Act proved both constitutionally sound, and popular. In 2008, Washington state voters approved I-1000, a bill developed and fiercely advocated by Compassion & Choices, and modeled closely off the successful Oregon law. In 2009 the Montana Supreme Court legalized aid-in-dying through Baxter v. Montana, a case brought by Compassion & Choices on behalf of a man dying of lymphocytic leukemia. That makes three states in which aid-in-dying is now permitted. California may not be far behind, should the Right to Know End-of-Life Options Act, signed into law in 2009 and similarly authored by Compassion & Choices, remain popular. A groundswell appears to have risen. A backlash may soon follow.

On June 16, 2011, the United States Conference of Catholic Bishops (USCCB) approved a statement expressing their firm opposition to aid-in-dying, stating “allowing doctors to prescribe patients the means to kill themselves is a corruption of the healing arts.” The church’s opinions here are significant, as Catholic hospitals account for over 12.5% of all community hospitals in the U.S. Though their position regarding this matter has long been well known, of late they have grown more vocal. In March of 2004, Pope John Paul II pronounced the removal of feeding tubes from vegetative patients immoral, the procedure that precipitated the Terri Schiavo media frenzy.

Indeed, if Compassion & Choices has acted as the standard bearer for the aid-in-dying movement, the USCCB has acted in the roll of foil, campaigning vigorously against assisted-dying initiatives. In their recent statement, the USCCB states that Catholic teaching views suicide as “a grave offense against love of self, one that also breaks the bonds of love and solidarity with family, friends, and God.” In her response, Barbara Coombs Lee writes “A bright and wide line separates the crime of assisting a suicide from the medical practice of aid in dying…we welcome – and are deeply grateful for – today’s clarity and affirmation that religious objection is the foundation of opposition to the medical practice of aid in dying.” One could be forgiven for recognizing echoes of the fall-out following Roe v. Wade, with Compassion & Choices in the place of Planned Parenthood, and organizations like the Euthanasia Prevention Program in place of the National Right to Life Council.

Perhaps it’s too early to say. This is an endlessly complex issue, and there are plenty of prominent Catholic figures that support physician-assisted dying, as well as doctors who do not, citing a potential for abuse and untoward pressure applied to terminally ill patients. The state of New York, for instance, recently passed a law, widely disliked within the medical community, requiring its physicians to discuss “end-of-life options” with their patients. Public opinion seems perhaps less conflicted than in the case of abortion: depending on the language, with a vast differential between assisted-suicide and aid-in-dying, a greater number of Americans have always supported the right to end-of-life choice (a distinction likewise sited by aid-in-dying proponents, the word “suicide” implying a depressive or mentally unsound person). Still, who’s to say how this will play out should the legalization drives continue, and the conversation grows louder. Either way, it appears that the aid-in-dying controversy is only just getting started.

Read the post and others by Antal Polony over at seven ponds.

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

Different Worlds

The PBS Frontline show, “Facing Death” continues to resonate in blogs and opinion pieces across the nation. Many people told me how hard it was for them to watch it. The footage is indeed challenging, for it displays a parade of suffering and grief, with precious little compassion or joy in balance.

Yet the dialogue and the stories carry powerful lessons. So I watched it again and talked with others who had also watched it twice. I read the transcript. The stories reveal startling truths. Each truth warrants a blog of its own, and more. Here are a few of the most distressing:

1. Patients receiving aggressive therapies often die of those therapies, not of their underlying disease. We meet one patient who succumbs to the consequences of his treatment and others who barely survived, only to see their disease recur and die soon thereafter. A bone marrow transplant specialist tells us stem cell transplants kill up to 30% of recipient patients.

2. When doctors talk about a patient’s situation, they say very different things to each other than to the patient and the patient’s family. The difference is not only medical jargon versus plain speaking. The difference is scientific understanding versus wishful thinking.

3. Palliation and hospice play practically no role in the medical care of these patients. Hospice, the gold standard for symptom management and peaceful, gentle dying, appears only as a final receptacle for treatment “failures.”

4. To doctors, death is the enemy; suffering is not. Suffering is a heroic contribution to the advance of science, or the worthy price of living one more day in a hospital.

The concept of a “good death” does not exist in this world – the wards of Mount Sinai shown in this film. The sad truth is these patients probably relinquished any possibility of a “good death” when they signed up for the aggressive treatments we see them endure. Indeed, most of the physicians seem untrained in the elements of a good death and they discount its value as the graceful acknowledgment of mortality and compassionate legacy to bestow on family.

But there is another world. By coincidence, just a few days earlier the Dartmouth Atlas Study mapped the locations in the United States where these two worlds simultaneously exist. The first world, where patients dying of cancer endure repeated hospital admissions and long internment in the intensive therapy units of academic institutions, is in Manhattan and Los Angeles. Forty-seven percent of patients in those locales die that way. The epicenter of the other world, where cancer patients die at home and receive comfort care, is Mason City, Iowa. Only 7% of cancer patients there die in a hospital.

The author of the report, Dartmouth Medical School professor Dr. David Goodman, says, “We know that the care [patients] receive has less to do with what patients want and is more about the hospitals they happen to get care at. Generally, the care often doesn’t represent their preferences.” In an interview, he said, “On average, patients, particularly with advanced cancer, would much prefer to receive care that allows them the highest quality of life in their last weeks and months — and care that allows them to be whenever possible at home and with their family.” A news release from the National Hospice and Palliative Care Organization cites the study to confirm that many patients receive aggressive treatment when they’d prefer comfort care, and “for frail elderly patients, and any patient with advanced cancer, these treatments have limited or no benefit.”

Limited or no benefit. People living in the worlds of Manhattan and Mason City do not differ in their rates of cancer survival, or how long they are likely to live with advanced cancer.

One of the touchstones of my advocacy is the example set by Jacqueline Kennedy Onassis. Although she lived at the epicenter of the aggressive treatment world, she died like a Mason City native. Diagnosed with non-Hodgkins Lymphoma in early late 1993 or early 1994, she received care at a prestigious academic center — Cornell-New York Hospital. She continued to work as long as she could. On May 18, 1994 she visited her hospital physicians for the last time. She left without allowing them to admit her, returning home instead. There she died the next day.

In announcing her death to the crowds gathered outside her apartment, her son, John Kennedy Jr. said, “My mother died surrounded by her friends and her family and her books, and the people and the things that she loved. She did it in her own way, and on her own terms, and we all feel lucky for that.”

The physicians of Manhattan would do well to learn how to enable patients to follow her noble and courageous example.

“Letting Go” by Atul Gawande Presents Doctors’ Perspective — But That’s Not Enough.

“Modern medicine is good at staving off death with aggressive interventions—and bad at knowing when to focus, instead, on improving the days that terminal patients have left.”

So begins Atul Gawande’s widely read and influential article in The New Yorker magazine last August. That opening encapsulates Gawande’s clear articulation of barriers to good end-of-life care. It also reveals his underlying bias. Medicine’s bias toward aggressive, mostly futile treatment is perhaps the greatest obstacle between patients and a peaceful, gentle death.

Gawande writes that modern medicine is “bad at knowing when,” to focus on a patient’s quality of life. That implies the solution is for doctors to improve their ability to know when to change focus. Maybe so — but that would not get to the heart of the matter.

At Compassion & Choices we represent patients. Our view is only they — not doctors — have authority to decide when it’s appropriate to focus treatment on quality of life. Patients usually defer this decision to their doctors because they lack sufficient information to make a judgment. They don’t know the likelihood a treatment will extend life, or for how long, or at what cost in adverse side effects. But it is the patient’s decision, make no mistake.

Thank you, Dr. Gawande, for highlighting the need for better communication and frank disclosure at the end of life. Apart from ignoring patient self-determination, Dr. Gawande made some excellent points. Here’s how they compare to our own experience and philosophy.

Balance. Dr. Gawande makes an excellent argument for shifting attention from concerns about the cost of end-of-life treatments to a focus on what is best for patients.

“Surveys of patients with terminal illness find that their top priorities include, in addition to avoiding suffering, being with family, having the touch of others, being mentally aware, and not becoming a burden to others. Our system of technological medical care has utterly failed to meet these needs, and the cost of this failure is measured in far more than dollars.”

We agree. The tragedy is patients suffer needlessly at the end of life. The extraordinary cost just adds insult to injury.

Informed Consent. Here’s where Dr. Gawande betrays a reluctance to give patients comprehensive, candid information.

“There is no cure for lung cancer at this stage. Even with chemotherapy, the median survival is about a year. But it seemed harsh and pointless to confront Sara and Rich with this now.”

While it may feel harsh to a physician, it is hardly pointless. Information empowers patients to make valid decisions and give informed consent. When doctors are reluctant to discuss bad news, they may project that feeling onto their patients, who, research shows, generally are willing and eager to understand their options and prognosis. In a study of 2,331 patients with cancer, 87% report they want as much information as possible regarding their diagnosis and prognosis, even if it isn’t good.

Autonomy. The article suggests more than once that patients and their families seek aggressive treatment their doctors would not recommend. That may happen occasionally, but more often doctors are reluctant to both recognize and divulge just how futile further disease-specific treatment may be. Dr. Gawande defends doctors who withhold information, and suggests they can assess patient and family decisions without giving and receiving explicit information and consent.

“Perhaps Marcoux could have discussed what [Sara] most wanted as death neared and how best to achieve those wishes. But the signal he got from Sara and her family was that they wished to talk only about the next treatment options. They did not want to talk about dying. (Emphasis ours)”

Later, he writes, “Marcoux took the measure of the room.”

Dr. Gawande and the oncologist he writes of, like many well-intentioned doctors, may suppose they know what their patients want without an explicit discussion or clear expression of choices. A recent study shows doctors usually don’t understand their patients’ beliefs about the cause, meaning, treatment, and control of their condition. Doctors presume their patients’ beliefs align with their own. As a result they make erroneous assumptions.

Conversation. Dr. Gawande relates how he learned it’s important for doctors and patients to have meaningful discussions about end-of-life choices. His surprise at discovering this is a pleasant affirmation to those of us who have observed the phenomena and promoted these conversations for years. Discussing a pilot program where palliative care experts had regular conversations with terminally ill patients, he writes,

“they had simply given patients someone experienced and knowledgeable to talk to about their daily needs. And somehow that was enough—just talking. The explanation strains credibility, but evidence for it has grown in recent years.”

Focus and Self-determination. Dr. Gawande writes with great understanding of how important and difficult doctors find conversations with dying patients about end-of-life preferences. He writes supportively of the legislation Compassion & Choices championed to reimburse doctors for these conversations. He quotes palliative care specialist Dr. Susan Block in highlighting the need for better provider education.

“’You have to understand,’ Block told me. ‘A family meeting is a procedure, and it requires no less skill than performing an operation.’”

In the paragraphs that follow, the experiences of Dr. Block and an unnamed oncologist paint a picture of how frank dialogue with a patient and their family, pushing past the discomfort the doctor may feel, can shift the focus to patients and empower them to make a difficult decision. The oncologist, he writes,

“was frank. She told [the patient] that in her entire career she had never seen third-line chemotherapy produce a significant response in his type of brain tumor…. And, although she was willing to proceed with chemotherapy, she told him how much strength and time the treatment would take away from him and his family. He did not shut down or rebel. His questions went on for an hour. He asked about this therapy and that therapy. And then, gradually, he began to ask about what would happen as the tumor got bigger, the symptoms he’d have, the ways they could try to control them, how the end might come.”

Compassion & Choices organizes its vision of optimal decision-making in Seven Principles for Patient-Centered End-of-Life Care: focus, self-determination, autonomy, personal beliefs, informed consent, balance and notice. Dr. Gawande’s best points are included, as well as tenets we hope he might adopt. We hope someday all practitioners adopt these principles as a guide, break old patterns of “everything possible” and fully inform and authorize patients to make the most important decisions of their lives.