End-of-Life Choice, Palliative Care and Counseling

Posts TaggedDeath with Dignity Act

The Evolving State of Physician-Assisted Suicide

By Jaime Joyce
The Atlantic
July 16, 2012

Should terminally ill patients have the right to kill themselves? Voters in Massachusetts will soon decide. Last Wednesday, the Secretary of the Commonwealth announced that on November 6, 2012, when Bay State voters go to the polls to pick the next President, they will also have their say on a ballot measure called the Death with Dignity Act. If passed, the law would make Massachusetts the third state to give adults diagnosed with six months or less to live the option to end their lives using a lethal dose of doctor-prescribed medication.

Last year, volunteers from across the state began a petition drive to collect the 68,911 signatures needed to introduce the act for consideration by the state legislature; by the time they were done, they’d gotten more than 86,000 voters to sign on to show their support. Lawmakers had until the beginning of May to address the issue, but they declined to do so. In response, volunteers fanned out for a second wave of signature gathering. An additional 21,000 people from the state’s 14 counties signed on to support the Act. That’s nearly double the number needed to bypass the statehouse and bring the issue directly to voters via ballot measure.

Oregon and Washington were the first states to enact Death with Dignity laws. (In Montana, the state’s Supreme Court ruled in 2009 that physician-assisted suicide was legal, but Montana has no guidelines in place to regulate and monitor the practice.) Since 1997, when Oregon’s Death with Dignity Act went into effect, more than 900 people have received prescriptions to their end their lives. Not all have used the drugs. The Oregon Public Heath Division reports that more than 600 individuals have taken the dose, while the remainder either decided against using the prescription, or succumbed to their diagnosed illness.

In Oregon and Washington, patients must first make two requests of their doctor for medication, fifteen days apart. The patient then has to make the request in writing. In order to prevent potential abuses, patients are required to sign consent forms in the presence of two witnesses to whom they are not related. Once approved, patients must self-administer the drugs. Typically, it’s a deadly dose of Seconal, a barbiturate often prescribed by doctors to treat insomnia or to calm patients before surgery. The contents of the capsules are stirred into a glass of water or a serving of applesauce, to dull the taste. Statistics compiled and released annually by the Oregon Department of Health show that in the majority of cases, people lose consciousness within five minutes of swallowing the drugs. It can take anywhere between one minute and four days to die, but for most people death comes in just 25 minutes.

Ninety-eight percent of people who have made use of the law in Oregon are white. Eighty-one percent had cancer. Fifty-two percent were men. The median age of those who died using the law was 71. Most patients were enrolled in hospice and privately insured. They cited loss of autonomy, loss of dignity and the fact that they were “less able to engage in activities making life enjoyable” as the top three end-of-life concerns. In Washington State, where a Death with Dignity Act was approved by ballot initiative in 2008, and went into effect the following year, patients fit a similar profile. According to the latest figures released by the state, 135 people have died from the lethal prescription. The Death with Dignity Act that will go before Massachusetts’s voters this fall is modeled after laws in place in Oregon and Washington.

A survey conducted in May by Western New England Polling Institute showed that 60 percent of Massachusetts’s voters supported the rights of terminally ill patients to legally obtain and ingest life-ending drugs. Still, the measure faces tough challenges from powerful factions within and beyond the state. The Massachusetts Medical Society opposes the Act. The American Medical Association does too. “Physician-assisted suicide is fundamentally incompatible with the physician’s role as a healer,” the AMA states in its Code of Medical Ethics. “Patients should not be abandoned once it is determined that cure is impossible.”

Disability-rights activists have also spoken out against physician-assisted suicide. So has the Catholic Church. Noting a resurgence of interest in the topic and a renewed push by advocates of physician-assisted suicide to extend the practice beyond Oregon and Washington, the United States Conference of Catholic Bishops last year issued an impassioned statement against the practice. In Massachusetts, the Roman Catholic Archdiocese of Boston, anticipating the ballot measure, created a website, suicideisalwaysatragedy.org. “Our society will be judged by how we treat those who are ill and infirm,” Archbishop of Boston, Cardinal Sean O’Malley, says in a video address that appears on the site. “They need our care and protection, not lethal drugs.”

But it’s the people of Massachusetts who will ultimately decide the law’s fate, not religious leaders, lawmakers or medical professionals. Dr. Marcia Angell, former editor of Massachusetts Medical Society’s New England Journal of Medicine, and one of the Act’s lead sponsors, puts little stock in what physicians have to say about the matter.

“I am less concerned with what doctors want than with what patients want,” Angell said in an interview that aired on WGBH, in Boston. She continued, “I think doctors sometimes have a too-narrow idea of what their own obligations are. They feel they have an obligation to extend life even when it can’t be extended significantly. And even if you have that situation, then it seems to me they have two obligations. One is to support the autonomy, the self-determination of their patients. And the other is to relieve suffering. If you can’t extend life significantly, then you must relieve suffering.”

A study released by the Health Research and Education Trust shows that Americans are living longer lives than ever before. As a result, more individuals and families will face difficult questions about end-of-life care. In 2011, the oldest Baby Boomers turned 65. By 2030, the number of Boomers between 66 and 84 years old will climb to 61 million, and six out of 10 will be managing chronic health conditions. For the elderly and others facing terminal illness, doctors have numerous ways to prolong life. Palliative and hospice care are available to help patients find peace and comfort in their final days. But there are some people who want another option, which is the right to end suffering by taking their own life at a time and place of their choosing.

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.”

Peter Goodwin, Pioneer for Human Liberty

Eighteen years ago, Dr. Peter Goodwin led the fight to grant Oregonians the right to end-of-life choice. I was honored to work alongside Peter as a co-campaigner and call him a friend. Both as a physician and an advocate, he promoted honesty in facing death. This month he confronted his own approaching death with the same honesty. Terminally ill with a rare, fatal brain disease with no known cure, Peter exercised the right to a peaceful death he helped secure.

Without Peter, Oregon’s Death with Dignity Act (DWDA) simply would not exist, nor would our national movement be where it is today. He is a hero of mine. A pioneer for human liberty, Peter had the courage to talk about death openly in a death-denying culture. Though not a political person, he exposed himself to the rough and tumble of the political arena, a sacrifice in service to compassion at the end of life. Even in the face of determined opposition, Peter campaigned tirelessly and never lost faith or focus.

Peter, Elven Sinnard and I were the chief petitioners for the ballot measure that led to the legal aid in dying in Oregon. Peter called his accomplishments as chair of the committee to pass the DWDA in the mid 1990s “the most gratifying of my entire life.” He was instrumental in persuading the Oregon Medical Association to remain neutral in 1994 and assembled physician colleagues to stand in contrast to the Association’s opposition in 1997. After implementation began, Dr. Goodwin helped launch Compassion & Choices of Oregon and became its first Medical Director.

His dedication never flagged. In the past month, knowing he had only weeks of life remaining, he gave generously of his time, granting multiple interviews on his life’s work and the importance of end-of-life choice. Speaking on camera, he talked about his work on aid in dying, and his approaching death.

Peter began medical practice as a surgeon. He ended it as a role model and educator in family practice, promoting healing and growth from the beginning of life to its end. He said no experience was more powerful than interacting with dying patients. Here he talks about abiding by and caring for patients as they approached death.

Even more important than being a great physician, teacher, and human rights leader was Peter’s devotion to family. Erica, his wife of 50 years died in 2008. Peter said, “I will never get over the loss of her presence in my life. If her death had not preceded mine, this decision would be much more difficult.” Just weeks ago, he talked about saying goodbyes.

On Sunday, March 11, 2012, Peter died after taking medication he obtained under the provisions of Oregon law. He was surrounded by his four children and their spouses, and a Compassion & Choices volunteer was with them as well. Much laughter and love surrounded Peter as he spoke his final farewell. His last message to friends and colleagues: “Love abounds.”

We shall miss our dear friend. We draw comfort knowing his life was rich in meaning and filled with love, and that he died on his own terms with courage, grace and dignity. None could ask for more. With sincere gratitude we honor a genuine humanitarian and pioneer for end-of-life liberty, Dr. Peter Goodwin.

Peter Goodwin: The Dying Doctor’s Last Interview

[VIDEO] TIME MAGAZINE
By BELINDA LUSCOMBE

Dr. Peter Goodwin, a family physician and right-to-die activist, took his own life on March 11, 2012, at age 83. He did it legally, with the blessing of his family and doctors, under the Oregon law allowing physician-assisted suicide — the first such law in the country — that Goodwin was instrumental in creating.

Dr. Goodwin granted TIME his last interview, four days before he died.CLICK TO WATCH
(The full interview will be available online on Thursday and in print on Friday.) He did not look like a dying man; he was chirpy and alert and still had a mischievous twinkle in his eye. However, as a result of his fatal disease — a Parkinsons-like condition called coritcobasal degeneration — he could not use his right hand or do much reliably with his left. Walking was difficult for him and stairs were particularly treacherous. He did not want to die, but death was coming anyway, and he did not want to wait.

“I can no longer eat in public,” Goodwin said. “My balance is gradually deteriorating. My three doctors agree that I’m within six months of dying. My attending physician has given me a prescription for medication to end my life and I have had it filled.”

In Oregon, doctors may not administer injections to end a life, but they are allowed to write prescriptions for lethal drugs for mentally competent people who are able to take the medication without help and have less than six months to live. And yes, the prescriptions are covered by health insurance.

Dr. Goodwin took his life on Sunday not because he could not bear to live any more nor because he was in incredible pain, but because he wanted to die among family. He timed his death so that  his four children and their spouses could be there, including his younger son, who is a Navy pilot in Korea. During our interview, he wept several times at the thought of no longer being involved in their lives.

Ever the activist — Goodwin was brought up in South Africa and his cousin was a defendant in the Rivonia trial alongside Nelson Mandela — the doctor wanted to make his death mean something. The moral question of whether doctors should be allowed to enable terminally ill people to kill themselves is not yet settled in the U.S. Currently physician-assisted suicide is permitted only in Oregon, Washington and Montana.

Oregon voters approved the Death With Dignity Act at the polls in 1994; it was enacted three years later, after they voted down legislation that would have repealed it. To date, 597 people have died under its provisions. Goodwin, who has himself helped three patients die under the legislation — and one patient even before the Death with Dignity Law — has fought tirelessly to change people’s attitudes about death, right up until his own.

Goodwin gave lectures and interviews as long as he was able about the importance of advance directives at the end of life as well as open and frank discussion with loved ones. He wanted the end of life to be as gentle as possible and within the patient’s control. He was also a big advocate of allowing dying people to receive hospice care early, rather than letting doctors continually try to cure them. “Physicians are taught to treat, and they often go on treating and treating and treating,” he said. “It’s very, very difficult because they have so much in their armamentarium — so many new ways of treating cancer, so many new ways of treating heart disease — it’s very difficult for physicians to give up.”

Goodwin passed, it seems, just as he wanted to: half an hour after taking the lethal dose of medication his doctor prescribed for him and surrounded by his children.

Retired Doctor Tests Aid-in-Dying Law in Hawaii

By SUSAN DONALDSON JAMES
ABC News
Oct. 17, 2011

Jeri Orfali was a top software executive in the early days of Silicon Valley, author of several books and even professionally courted by Steve Jobs until, like Jobs, she was struck down with cancer at the age of 56.

“You don’t think about how someone dies from cancer,” said her husband of 30 years, Robert Orfali. “No one tells you what really happens. It took me by surprise, everything.”

The Orfalis settled in Hawaii, where his wife was eventually diagnosed with ovarian cancer and died in 2009. In her final days, she bore excruciating pain that was not helped by palliative care.

“In the end I could see tumors coming out of her legs and in her neck,” he said. “Her legs were swollen and her stomach was so bloated, the cancer almost burst out of her. She couldn’t get her next breath.”

There is no dignity in dying, according to Orfali, who was so horrified by his wife’s suffering that he wrote two books on the topic and has pushed to see Hawaii be the fourth state to legalize physician-assisted death.

And now, experts working with the national group, Compassion and Choices, and the Hawai’i Death With Dignity Society, have unearthed a 102-year-old provision in Hawaiian law that they say means aid in dying has been legal all along:

[W]hen a duly licensed physician or osteopathic physician pronounces a person affected with any disease hopeless and beyond recovery and gives a written certificate to that effect to the person affected or the person’s attendant, nothing herein shall forbid any person from giving or furnishing any remedial agent or measure when so requested by or on behalf of the affected person.”

Advocates say the provision was added in 1909 to give dying patients the option to get treatment that may not have been approved by the government. It likely arose out of now- canonized Father Damien’s missionary work on the Island of Molokai with those who suffered from leprosy.

Some retired doctors now say they are poised to go ahead and help those who seek aid in dying, provided they meet guidelines established by a law in Oregon, where doctors have been legally allowed to end a terminal patient’s suffering since 1997.

Since then, Washington and Montana have also legalized aid in dying.

“I think there is very little risk on my part if I did that,” said Dr. Robert “Nate” Nathanson, 77, a retired general practitioner from Oahu, who said he has kept his medical license current so he could test the existing law. “If you qualify and your own doctor won’t do it, I would be willing.”

Nathanson and Orfali were part of a recent forum on that legal provision and have been advocates for what they call “death with dignity.”

Advocates say that just having the lethal pills gives terminally ill patients peace of mind that they can control their lives and their death.

“I like the term ‘death with dignity’ — it is much better than physician-assisted suicide, which conjures up a person who is depressed and kills themselves,” said Nathanson.

Their loudest critics — right-to-life groups, the Catholic Church and those who represent the disabled — say Compassion and Choices, a national group that grew out of the former Hemlock Society, is spreading “misinformation.”

“Oops, they did it again,” responded the president of the Aloha Life Advocates, Karen DiCostanzo, in the Hawaii Reporter.

The advocacy group claims what they call “physician-assisted suicide” would be a “recipe for elder abuse.”

“The ‘panel’ consisted solely of suicide activists, so this was not a bona fide effort to air opinions from both sides and maintain balance,” DiCostanzo wrote. “Rather, this was meant as a PR stunt to create a news story and arouse public interest in their cause.”

She contends that the 1909 provision was written to allow doctors to give patients nontraditional remedies for illnesses such as Hansen’s disease (leprosy), tuberculosis and asthma.

Though she assails their argument as “weak,” DiCostanzo urges Hawaiians to “act now” to prevent Hawaii from going the route of three other states that give a physician the freedom to prescribe fatal medication to mentally competent patients who are terminally ill without fear of prosecution.

The Catholic Church was one of the groups that derailed an effort in 2002 to legalize assisted death in Hawaii. The bill, which had been introduced by Democratic then-Gov. Benjamin Cayetano and passed the state House of Representatives, was defeated 14-11 vote in the state Senate.

“What strikes me as so ironic about the movement for physician-assisted suicide — is that it is portrayed as a movement to affirm individual freedom and autonomy,” said the Bishop of Honolulu Clarence (Larry) Silva in an email to ABCNews.com. “However, the fact of the matter is that people have been committing suicide quite autonomously for millennia, without the help of physicians.

“The fact that the proposed laws require informed consent before a lethal dose can be prescribed indicates to me that in the depths of their hearts people know that suicide is wrong,” he said. “They seem to want a way to convince themselves that it is acceptable by having a ‘higher authority’ authorize it.”

He said suicide is “always a tragedy” and hurts family and friends who are “left behind,” leaving them with grief and “lasting guilt.”

But advocates for aid in dying say that end-of-life care is sometimes inadequate.

Orfali, who described his devotion to his wife as “love on steroids,” said her last days were agonizing when morphine and two other standard medications were unable to alleviate her pain.

She had been a champion surfer in her age class throughout chemotherapy, but in the end, “nothing worked,” even with the palliative care of hospice, he said.

Hospice care varies, according to Nathanson, who was one of the founders of two hospices in Hawaii. “They belong to a national association, but they make their own rules.”

Some allow “terminal sedation” — that is, giving an intravenous cocktail of drugs that depress respiration and hasten death — but others do not.

But terminal sedation is under a doctor’s control, according to Nathanson, and “the patient has no say in it.”

Critics of Oregon’s law have used the “slippery slope” argument that “people would come from miles around to get medicine and we would be bumping off the elderly and the poor,” he said, but that never materialized.

According to a report from the Oregon Department of Human Services, 95 prescriptions for lethal medications were written in 2010, compared to 88 during the previous year. Of those, 59 patients took the medications.

“There is also an incredible paradox here,” said Nathanson. “The people you end up writing a prescription for may end up living longer than expected. … They didn’t have the toxic anxiety that eats at you.”

As for Orfali, he said that had his wife been able to get a prescription for the Nembutal, the drug used in Oregon, she would have been spared so much suffering.

Jeri Orfali even ordered lethal medication on the Internet, but never used it.

“She really wanted pills as a backup, but she was too afraid to use them,” said her husband.

Medication obtained online often isn’t strong enough to induce death and a family member needs to be nearby to “finish off the job,” according to Orfali.

“She was a nonviolent person,” he said. “The last thing she wanted me to do was to put a bag over her head.

“She told me on her way out, ‘This doesn’t make sense to me in this condition. Can I try like in Oregon? That was the only thing she asked me in the end,” Orfali said.

Eventually, Jeri Orfali was given terminal sedation, but she endured 16 hours of tortured breathing before she had a blood clot and her lungs collapsed.

“It was like watching someone water boarded in front of you,” said Orfali, who wrote two books on the topic, “Death with Dignity,” and, “Grieving a Soulmate.” Meanwhile, he wonders about Steve Jobs’ death of respiratory failure just two weeks ago and whether he suffered as Jeri Orfali did.

“Everyone talked about how great things were and how he lived a great life. But did he have a good death?” asked Orfali. “Death is an ugly thing.”