End-of-Life Choice, Palliative Care and Counseling

Posts TaggedCompassion & Choices

Steve Lopez: End of life case in New Mexico may affect California

By Steve Lopez
Los Angeles Times
August 14, 2012

There’s no way to predict when or if California will offer what’s known in Oregon and Washington as Death with Dignity, or physician-assisted aid in dying, but I’ll keep you posted on a case in New Mexico that could have implications here.

In the New Mexico case, said Kathryn Tucker, legal affairs director for a nonprofit advocacy group called Compassion & Choices, “We hope to clarify … that a vague statute that makes a crime of ‘assisting suicide’ does not reach the conduct of a physician providing aid in dying, because of course the choice of a dying patient for a peaceful death is not, and ought not be conflated with, ‘suicide.’”

Tucker said the case in question involves a woman with advanced uterine cancer who has said she would like to have, as one option, the right to avoid prolonged suffering by obtaining doctor-prescribed medication she could ingest to bring about a peaceful death if she finds her dying process unbearable.

ucker said California’s statute on assisting a suicide is similarly vague, and if the New Mexico court rules in favor of allowing aid in dying, “it could have persuasive influence in California.”

To learn more about the legal and medical issues on this topic, go to www.compassionandchoices.org and check my video chat above with Tucker and Dr. Judy Neall Epstein, director of the End-of-Life Consultation Program at Compassion & Choices.

Steve Lopez: After a ‘barbaric death,’ a call for change

By Steve Lopez
Los Angeles Times
August 6, 2012

My Sunday column on the “barbaric death” of a terminally ill man near Sacramento, and his wife’s plea for an Oregon-like Death With Dignity law in California, brought responses from those wanting to know how to join such a cause.

As I’ve reported before, there is no current campaign for such a change. The best place to get involved in the greater movement, though, and to check on legal developments around the country that could one day have an impact in California, is to visit www.compassionandchoices.org. The no-profit advocates for more end-of-life options and alternatives to often-futile, budget-busting medical procedures that can end up doing little more than prolonging the dying process.

Some readers made pitches for palliative and hospice care as good ways of managing terminal illness and pain and suffering, and as I’ve written before, those can indeed be better and less-expensive alternatives in some cases than extended hospitalization.

When you’re in hospice or palliative care, though, that doesn’t mean round-the-clock care. It means you’ll have short visits from medical professionals every day, or maybe every other day. A family member often becomes the primary caregiver and ends up, as Sandy Wester described in my Sunday column about her husband Donnie, being witness to an excruciating death.

Sure, medication is available to minimize pain. But there’s a different kind of suffering that’s common for terminally ill patients, as I learned earlier this year with the prolonged death of my father. Sometimes he was in pain, but the greater suffering was from his growing limitations, his loss of privacy, and the agonizing realization that he had no control over the pace of his demise.

I said then, and I’ll say again now, that if and when I’m in a similar situation, I’d want to have among other options the legal right to determine my own fate, end my misery, and relieve loved ones of the physically and emotionally exhausting burden of caring for me as I wither away.

In Oregon and Washington, those who register for physician-assisted aid in dying don’t always use it, in the end. And most people don’t register at all.

I’d be relieved, though, to know that I had such an option.

And you?

For Palm Springs man, grief and anger over an end-of-life decision

By Steve Lopez
Los Angeles Times
July 21, 2012

On the evening of July 2, Bill Bentinck, 87, was led from his Palm Springs home in handcuffs, in mourning and in shock.

The body of his wife of 25 years, Lynda, was still in the house, but there was no time to grieve. After telling police that his terminally ill wife had chosen to disconnect her oxygen supply and put an end to her suffering from emphysema, he was arrested on suspicion of murder.

Bentinck, a straight-talking man in the Jimmy Stewart mold, felt that he had made a difficult but compassionate choice in honoring his wife’s last wish and not reconnecting the oxygen. But police saw it differently, and Bentinck, a retired entomologist and medical equipment designer, was about to endure a nightmarish three-day ordeal. More

Assisted Dying: Experts Debate Doctor’s Role

By Katie Moisse
ABC News
July 13, 2012

Peggy Sutherland was ready to die. The morphine oozing from a pump in her spine was no match for the pain of lung cancer, which had evaded treatment and invaded her ribs.

“She needed so much morphine it would have rendered her basically unconscious,” said Sutherland’s daughter, Julie McMurchie, who lives in Portland, Ore. “She was just kind of done.”

Sutherland, 68, decided to use Oregon’s “Death With Dignity Act,” which allows terminally-ill residents to end their lives after a 15-day requisite waiting period by self-administering a lethal prescription drug.

“Her doctor wrote the prescription and met my husband and me at the pharmacy on the 15th day,” said McMurchie, recalling how her mother “didn’t want to wait,” she said. “Then he came back to the house, and he stayed with us until her heart stopped beating.”

But not all doctors are on board with the law. In the 15 years since Oregon legalized physician-assisted dying, only Washington and Montana have followed suit, a resistance some experts blame on the medical community.

“I think it has to do with the role of physicians in the process,” said Dr. Lisa Lehmann, director of the Center for Bioethics at Brigham and Women’s Hospital in Boston and assistant professor of medicine at Harvard Medical School. “Prescribing a lethal medication with the explicit intent of ending life is really at odds with the role of a physician as a healer.”

More than two-thirds of American doctors object to physician-assisted suicide, according to a 2008 study published in the American Journal of Hospice and Palliative Care. And in an editorial published Wednesday in the New England Journal of Medicine, Lehmann argues that removing doctors from assisted dying could make it more available to patients.

“I believe patients should have control over the timing of death if they desire. And I suggest rethinking the role of physicians in the process so we can respect patient choices without doing something at odds with the integrity of physicians,” she said.

Instead of prescribing the life-ending medication, physicians should only be responsible for diagnosing patients as terminally ill, Lehmann said. Terminally ill patients should then be able to pick up the medication from a state-approved center, similar to medical marijuana dispensaries.

But assisted dying advocates say doctors should be involved in the dying.

“Patients deserve to have their physician accompany them there and not walk away,” said Barbara Coombs Lee, president of the Denver nonprofit Compassion and Choices.

Coombs Lee, a nurse-turned-lawyer and chief petitioner for the Oregon Death with Dignity Act, said decisions about death should be no different than other treatment decisions.

“Physicians don’t walk away from patients who make other intentional decisions to advance death, such as refusing a ventilator or a pacemaker,” she said. “Why walk away from a terminally ill patient requesting life-ending medication?”

McMurchie agrees.

“Anything that improves access to assisted dying is a step forward,” she said. “But I think shepherding patients through their final days is a huge part of a physician’s responsibility.”

Doctors, patient challenge New Mexico assisted suicide ban

By Diane Carman
July 11, 2012

The question before the court in New Mexico is absurdly simple and yet impossibly complex. What is the meaning of “assisting suicide”?

If a terminally-ill patient refuses a ventilator or a feeding tube and the physician yields to that decision, is that assisting suicide? If the patient is in excruciating pain and requests total sedation and no nutrition or fluids, can the doctor be held accountable for his death? What if the patient seeks a prescription from her physician so that when the pain of dying is overwhelming she can seek the ultimate relief on her own?

Two oncologists from the University of New Mexico Health Science Center and a patient with advanced cancer are the plaintiffs in a lawsuit filed in New Mexico District Court designed to clarify the legal definition of assisting suicide. That decision, likely to come in the next year, could send reverberations through the medical establishment in the Rocky Mountain West and across the country.

Morris v. New Mexico contends that the statute outlawing “assisting suicide” (NM Statute 30-2-4) never was intended to apply to physicians treating patients in the late stages of terminal illnesses.

The plaintiffs believe that “patients who are dying and finding themselves trapped in an unbearable dying process should be able to choose aid in the dying process,” said Kathryn Tucker, director of legal affairs for Compassion & Choices, a nonprofit organization that works to expand choices in end-of-life care. She is one of the attorneys representing the plaintiffs in the case.

Compassion & Choices advocates for physicians to be allowed to prescribe medication to mentally competent terminal patients who can administer the drugs to themselves “to bring about a peaceful death,” Tucker said.

The organization contends that it’s fundamentally different than the commonly held idea of suicide, which presumes that without the suicidal acts, the person would be able to live. Opponents say it is exactly the same, an affront to human dignity, false compassion and highly susceptible to abuse.

Patient’s story

If anyone had asked 48-year-old Aja Riggs a year ago for her opinion on assisting suicide, chances are she would have said that she supported it. “I would have said, ‘Sure, I think people have the right to choose at the end of their lives if they’d like a physician’s aid in dying.’ ” She’d never had a particularly keen interest in the issue, though.

That changed 11 months ago.

Now, the self-employed professional organizer from Santa Fe said, “It’s really important to me. I feel strongly about it.”

Riggs was diagnosed with uterine cancer last August.  Surgery in October revealed that her condition was at stage 3c, far more advanced than doctors had expected.

After she recovered from the surgery, she underwent chemotherapy, during which another tumor developed. Then she had radiation treatments and now is receiving chemotherapy again.

“When I was diagnosed, I decided I wanted the most aggressive treatment that’s going to be effective. I thought, if I can get another 20 years in this life or so, wouldn’t that be great,” she said.

But Riggs is realistic.

“If my disease progresses, more difficult individualized decisions will be coming up,” she said. “If this disease does look like it will end my life, I can’t say for sure how I will make those decisions. . . . I can’t tell you for sure that I would get that prescription, fill it and use it.

“But I absolutely want to have that choice.”

Lawsuit based on Montana case

Morris v. New Mexico is modeled on Baxter v. Montana, which was decided by the Montana Supreme Court in 2009. In a 5-to-2 ruling, the Montana court said that physician aid in dying was protected under the law providing for living wills.

The court said that the state’s Rights of the Terminally Ill Act “very clearly provides that terminally ill patients are entitled to autonomous, end-of-life decisions, even if enforcement of those decisions involves direct acts by a physician.”

Laws on assisted suicide are the purview of the states. In a case challenging Oregon’s assisted suicide law the U.S. Supreme Court ruled in 2006 that the federal government does not have the power to overrule state statutes in this area.

Laura Schauer Ives, legal director for the ACLU of New Mexico and co-counsel on the New Mexico case, said the Montana ruling serves as a precedent for Morris v. New Mexico.

“We have an unclear assisted suicide statute,” she said. “A number of states have taken the further step to prohibit physician aid in dying in addition to the assisting suicide prohibition.” New Mexico hasn’t.

The litigation is designed to determine what – if any — end-of-life care procedures by physicians are prohibited.

While the specific statutes across the country are not identical, states generally protect the rights of terminally ill patients to give advance directives and make decisions on their care at the end of life. Tucker, who was among the lead attorneys litigating Baxter v. Montana, maintains that the longstanding statutes outlawing assisting suicide were never intended to apply to physicians providing end-of-life care for terminally ill patients.

Colorado’s assisting suicide law states that it is the crime of manslaughter if a “person intentionally causes or aids another person to commit suicide.”

These statutes were “enacted at a time when medicine didn’t prolong the dying process as it does today,” said Tucker. “It’s pretty clear that that was not on the minds of legislators who introduced or voted on these measures.”

Instead, the laws were aimed at people who might provide a distraught teenager with the means to end his life after a bad breakup, or the friend who helps someone make a noose after he lost his job, she said. “There is an appropriate role for these statutes, but I don’t think they have anything to do with aid in dying.”

Professor Robert Schwartz of the University of New Mexico School of Law said that the argument in the New Mexico case is that “the court should defer to physicians in defining what constitutes appropriate care.

“No one is going to argue that a physician couldn’t, for example, prescribe palliative sedation. No one is arguing that a patient couldn’t decide not to take nutrition and hydration, at least under New Mexico law. That’s entirely the patient’s decision,” he said. “This is one of the arrows in the doctor’s quiver, one way to provide adequate care at the end of life.”

The Colorado Medical Treatment Decision Act,  signed by Gov. Bill Ritter in 2010, explicitly provides for persons to refuse medical treatment, nutrition and hydration, and to execute advance directives outlining the circumstances under which they want such measures to be taken on their behalf.

The Montana court endorsed the argument that prescribing a lethal drug for patients at the end of life is appropriate medical care. In its ruling, it stated, “A physician who aids a terminally ill patient in dying is not directly involved in the final decision or the final act. He or she only provides a means by which a terminally ill patient himself can give effect to his life-ending decision, or not, as the case may be. . . . The patient’s subsequent private decision whether to take the medicine does not breach public peace or endanger others.”

A similar lawsuit filed in Connecticut was dismissed by the state Superior Court in 2010. In its ruling, the court said, “taking one’s life even for a sympathetic reason is suicide” and therefore physician immunity from prosecution does not apply.

Tucker and Schwartz said, however, that momentum for physician-assisted suicide is strong across the West. Legislation that legalized it in Oregon and Washington, along with the Montana court decision, have generated growing support for the practice, and both advocates and opponents are watching the New Mexico case closely.

The doctors’ dilemma

Twice in his 40-year career, patients have asked Dr. Aroop Mangalik to write them prescriptions for drugs to, as he put it, “take care of their misery.”

“I said, ‘No. I can’t,’ ” said the oncologist, clinical researcher and professor of medicine at the University of New Mexico Cancer Center, who is among the plaintiffs in the lawsuit. (Mangalik is quick to emphasize that he is speaking for himself – not as a representative of the university.)

The New Mexico statute defines assisting suicide as “deliberately aiding another in the taking of his own life.” It makes no mention of physicians, but anyone convicted under the statute is guilty of a fourth-degree felony.

Oncologists frequently are faced with the challenge of helping patients cope with difficult decisions about continuing treatment or accepting that it is no longer productive.

“My mentor in medical school in Salt Lake City was very clear about being open and very sympathetic with patients,” said Mangalik. “He would not continue treatment without an open discussion with the patient.”

Mangalik said he has always tried to be open and honest with patients, no matter how tough the news might be. “It’s not something that becomes easy,” he said. “But I know if I don’t do it, the patient will be in a worse state.”

He became convinced of the need for physicians to be able to help terminal patients in the dying process about 15 years ago. “I realized that there were more patients being hurt not just by cancer or by chemo but by unnecessary ongoing treatments. I started working on ways to cut down on futile treatments through educational methods, counseling and also trying to develop policies for doctors to stop treating when the treatments were tortuous and not going to change anything.”

Mangalik said that oncologists know which types of cancer in which stage are likely to respond to treatment – and which do not.

“I’m not going to tell a patient or a physician how to lead their lives, but an honest discussion should be a minimum requirement,” he said. “That’s the least I’m advocating for.”

But he also said when the disease is no longer responding to treatment, “if the patient wants to end his life in the face of a terminal illness, he should be allowed to have that option.”

Dr. Katherine Morris, the named plaintiff in the case, is among the relatively few doctors nationwide who have been able to prescribe lethal medications to terminal patients legally.

Morris, a surgical oncologist, cancer researcher and professor of medicine at the University of New Mexico Cancer Center, practiced medicine in Oregon until 2010. Oregon was the first state to legalize medical treatment to assist in suicide under the Oregon Death with Dignity Act in 1997.

In announcing her support for the lawsuit that bears her name, Morris spoke of her experience with the procedure.

“A couple of years ago, a patient of mine in Oregon asked me for aid in dying, and because she lived in a state where it was already affirmatively legal, I had no fear of supporting her request… I wrote her a prescription, she got medication and she held onto it for a long time. After many months of good times and hard times, she decided – she decided – not to endure any further suffering. I hope the court will rule that patients in New Mexico have the same autonomy over their end-of-life choices.”

Morris also appeared in a documentary, “How to Die in Oregon.”

The opposition

The United States Conference of Catholic Bishops calls the efforts of Compassion & Choices “a corruption of the healing art” and a “threat to human dignity.” In an official statement released in 2011, the bishops condemned physician assisted suicide in all cases.

But the most outspoken opponents to physician-assisted suicide have been leaders in the disability rights community.

Diane Coleman, president and CEO of the nationwide disability rights organization Not Dead Yet, said there already are sufficient means for terminally ill patients to end their lives without providing immunity from prosecution for physicians who prescribe lethal drugs.

“The risks to many outweigh the alleged benefit to the few,” she said. Those risks include people succumbing to coercion from heirs or other family members, or to pressure from health insurers who deny services needed to cope with limitations caused by their conditions.

For patients seeking physician-assisted suicide in Oregon, Coleman said one of the most frequently mentioned reasons is that they feel that they are a burden on their families, either because of the care they require or the financial burden of their treatment.

“Home care is the No. 1 issue in the disability community,” she said. “We understand what that’s about and why home care is so important.”

With competent, reliable assistants, people with severe disabilities can lead full, productive lives, said Coleman. Physicist Stephen Hawking, who has amyotrophic lateral sclerosis and has been called the “Nelson Mandela of the disabled community,” may be the most famous example.

Rather than assisting people in ending their lives, Coleman suggests that physicians should help patients access the support they need to live well.

“…The disability community has always been concerned that assisted suicide costs a lot less than ongoing health care,” Coleman wrote in a blog post last year.

“…People with disabilities have long been denied many forms of needed health care for cost reasons. … People who claim that cost would never be an issue are naïve, privileged, dishonest or some combination of those.”

For those whose pain becomes unbearable, she said palliative sedation “takes care of that issue.” Patients can execute advance directives that say in the case of extreme pain, doctors are instructed to sedate them and withhold food and water. “They will be unconscious and die in their sleep. There’s no need to cross the line and apply active measures to cause death.”

Part of an ethical continuum

Mangalik understands opponents’ concerns, but questions the ethics of giving terminally ill patients false hopes and treatments that have no chance of success.

“Optimism is good,” he said. “But I’m a very strong believer that everything has a limit, including optimism.”

Too often he sees doctors who encourage patients to submit to experimental treatments when there is no hope of extending life. “In many cases, this is unethical,” Mangalik said. “If the doctor is optimistic in his tone, the patient goes into it.”

Mangalik said patients should be fully aware of the potential risks and benefits before they are asked to accept experimental treatments.

It’s even more important, Mangalik said, to help terminally ill patients live what’s left of their lives fully.

“It’s a process,” he said. “The physician clearly states, ‘Let’s focus on you and not your cancer. Let’s focus on how best to achieve comfort for you.’

“Many a time, when a patient has been coming in for active treatment and we have this discussion and he decides to stop, he’ll come back in two weeks and say, ‘Life is so much easier now.’”

For Riggs, that kind of straightforward talk is critically important.

“I can’t say for sure how I will make these decisions,” she said. If treatment no longer is productive, she anticipates she will be “weighing the facts. I will look at them very clearly and have people around me to give me an honest picture of what’s going on. I’ll be sitting with that information, waiting for my heart to respond.”

The public response to her stand on this issue has been “overwhelmingly positive,” Riggs said. “People have said, ‘Thank you so much for speaking out on this.’”

It’s important to remember, she said, that the only patients who would be allowed to obtain physician assistance in suicide would be those who are terminally ill and mentally competent.

“This is something the patient chooses and does for herself. It’s not the doctor doing it,” she said.

“It’s not a choice between life and death. It’s a choice about what kind of death.”