End-of-Life Choice, Palliative Care and Counseling

Right to Know

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.

Putting Patients First

Patient care and healthcare should be synonymous — right?

At Compassion & Choices, we believe that healthcare should be all about patient care, especially at the end of life. But too often, policy debates on care at life’s end focus on everything but the patient.

How is it possible to leave patients behind?

Just look at the healthcare insurance reform debate. Right now, as administrators in Washington, D.C., hammer out the new law’s implementation details, insurance industry executives and lobbyists push to make sure their interests come first. That’s why Congress focuses so much attention on who gets reimbursed for what and how, which federal agency oversees which part of the act, and what each section of the bill means for the industry.

Few people and organizations ask, “How can we make sure patients get what they want and need?” And even fewer advocates work to make sure that patients’ wishes are honored at the end of life.

Time and again, we see the focus shift from patients to process when care at the end of life is legislated and regulated.

Watch this short video to see what I mean. It’s from “Living Well at the End of Life,” a National Journal panel discussion I recently joined in Washington.

Compassion & Choices has renewed its commitment to work for healthcare policy that is centered on patients, not process. I’m thrilled to announce that we now have a Washington, D.C., policy office to amplify our voices in the Capital — the voices of our supporters, patients and families.

Staff in our new Washington office will track legislation as it develops and educate Congress and regulators about end-of-life issues. Our priorities will be front and center during the debates that matter most. And we’ll make sure that patients aren’t forgotten when legislators discuss healthcare at the end of life.

This is a major step forward for Compassion & Choices and our movement. The debate over our issues will never be the same and I am very excited about this milestone.

Harris Poll Shows Need for Policies Supporting End-of-Life Choice

PORTLAND, OR – Compassion & Choices, the nation’s largest and oldest nonprofit organization working to improve care and expand choice at the end of life, today reacted to a new Harris Poll on end-of-life issues. The poll shows overwhelming support for autonomy at the end of life and for patient-centered consultation with physicians.

The poll shows more than two-thirds (70%) of adults agree terminally ill patients should be able to choose aid in dying. Two-thirds (67%) think doctors should consult with their terminally ill patients who want information on all possible options in end-of-life care, from aggressive treatment to comfort care alone.

“Once again the American people are ahead of politicians, who are unwilling or unable to adopt public policies to support the choices their constituents want,” said Barbara Coombs Lee, president of Compassion & Choices. “Socially conservative politicians across the country continue to ignore the overwhelming public support for aid in dying. One Montana legislator wants to nullify that state’s own Supreme Court, which recognized the right to physician aid in dying in 2009. We see a federal unwillingness to compensate doctors for consultation on their patients’ treatment desires. Fortunately, signs of hope appear in the patient-centered consultation bills recently passed in California and New York.”

People who want information on advance care planning, or who are facing a terminal illness, can get information from Compassion & Choices at www.compassionandchoices.org/g2g, or by calling 1 800 247 7421.

“The vast majority of Americans want to know about their end-of-life choices,” says Coombs Lee, “and they want aid in dying to be among those choices. It’s time politicians caught up with the people. Aid in dying should be an optional component of standard end-of-life practice throughout the nation. Patient-centered consultation with physicians should be the norm.”

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.