by JoNel Aleccia, Kaiser Health News
Americans who want to ensure they have a say in how they die should examine the lessons of Oregon, a new analysis suggests.
Seriously ill people in that state are more likely to have their end-of-life wishes honored — including fewer intensive-care hospitalizations and more home hospice enrollments — than those living in neighboring Washington state or the rest of the country.
In 2013, nearly two-thirds of Oregonians who died did so at home, compared with fewer than 40 percent of people elsewhere in the U.S., according to the report published Wednesday in the New England Journal of Medicine. Previous research had shown that more than 85 percent of Americans say they’d prefer to die at home.
“Obviously, if you’ve spent decades trying to improve your end-of-life care, it’s pretty rewarding to see that something changes,” said Dr. Susan Tolle, director of the Center for Ethics in Health Care at the Oregon Health & Science University in Portland, who co-led the study.
The review analyzed Medicare fee-for-service claims data from 2000, 2005 and 2013, and it compared end-of-life care in Oregon and Washington — a nearby state with similar demographics and attitudes toward end-of-life care — with the rest of the U.S., excluding those two states.
It found that in 2013, ICU use in the last 30 days of life was about 18 percent in Oregon, compared with 23 percent in Washington and 28.5 percent in the rest of the U.S. Nearly three-quarters of patients in Oregon hospitalized in the last month of life were discharged to home, compared with slightly fewer than two-thirds in Washington state and a little more than half — 54.2 percent — in the rest of the U.S.
More than 40 percent of patients in Oregon were enrolled in home hospice in 2013, compared with about 30 percent in Washington and fewer than 20 percent in the rest of the U.S, the analysis found.
Oregon, which enacted the nation’s first death-with-dignity law and led the way on implementing portable medical orders for treatment at the end of life, may be reaping the results of those and other efforts, said Tolle’s co-author, Dr. Joan Teno, a professor of medicine, gerontology and geriatrics at the University of Washington in Seattle.
“When you look at the patterns, it’s very different than the rest of the United States,” she said. “It’s even different than a borderline state.”
Pat Duty, 64, who ran a Portland floor-covering business with her husband, Jimmy, for years, said Oregon’s palliative care culture helped guide treatment decisions after his 2013 diagnosis of lung cancer and dementia. Jimmy Duty wanted limited medical interventions; he had a do-not-resuscitate order, plus a request to avoid the ICU.
“He was very clear that quality of life was his first choice,” Pat Duty recalled. “We knew we needed to discuss these things while he could make decisions for himself. We wanted to give him the dignity and grace he deserved for his final couple of years.” He died in October 2015 at age 74.
Creating such a culture is much harder than it looks, Tolle and Teno argued. Oregon has successfully integrated awareness of end-of-life care at all levels, from state government and emergency care to individual decisions made by patients and their doctors.
“If patients’ goals are not linked to actionable care plans that are supported by local health care systems and state regulations, many patients who wish to remain at home will die intubated for all the reasons the current system fails them,” they wrote.
Across the U.S., there’s been a push to promote ways to indicate end-of-life treatment preferences, including advance directives, which provide guidance for future care, and Physician Orders for Life-Sustaining Treatment, or POLST, portable medical orders authorizing current care. Twenty-two states now have POLST programs and others are working on or considering them, said Tolle, who co-led the creation of POLST in the early 1990s.
But the researchers warned that, while POLST efforts are important, simply filling out the forms is not enough.
“We were highlighting that there’s no simple answer,” Tolle said. “You can’t just do one thing and think that you will change the culture of end-of-life care. It is a whole lot of work.”
Dr. Scott Halpern, a medical ethics and health policy expert at the Perelman School of Medicine at the University of Pennsylvania, has been a chief critic of POLST efforts, contending that there’s little evidence that the medical orders improve quality of life near death.
The new analysis by Tolle and Teno doesn’t fill the gap, he said. But he agreed with the authors’ contention that a focus on single interventions ignores the complexity of end-of-life decisions.
“Good end-of-life care involves physicians eliciting patients’ values, hopes and fears and making treatment decisions that align,” Halpern said.
The new analysis, which was funded by a grant from the Robert Wood Johnson Foundation, underscores that families and patients outside of Oregon must be vigilant to ensure they receive the care they want, Tolle said.
“The level of care you receive near the end of life depends more on the state you live in and the systems they have in place than your actual wishes,” she said.
KHN’s coverage of end-of-life and serious illness issues is supported by The Gordon and Betty Moore Foundation.
by Midge Levy
Joanne was a life long King County resident who was active in education and community concerns. She served in the Washington State House of Representatives for the 32nd District from 1978 – 1993, with a particular interest in human services and the environment and during this time introduced three Right To Die bills. She was introduced to the board of the Hemlock Society of WA State by her friend and neighbor, Barbara Dority, and was enthusiastically elected to the board in 1996.
The Hemlock Newsletter reported her statement as follows: “During my tenure, I had the honor of working on legislation on end-of-life issues. I had the privilege of supporting both my mother and my step-father at the end of their lives in 1994, and am now even more convinced of the need to control one’s destiny.”
Joanne chaired our Legislative Action Committee and served as a volunteer lobbyist, following bills that had relevance to our issue and working closely with the ACLU. She was invited by the National Hemlock Society to attend meetings and share her experience in attempting the passage of legislation in WA State. Following the merger of our two organizations Robb remembers Joanne’s invaluable assistance to him in keeping him informed of state political developments.
Sadly Joanne was diagnosed with Parkinson’s, she and Governor Booth Gardner were members of the same Parkinson’s Support Group. She continued to attend board meetings for some years but struggled with her symptoms and communication became difficult although she appeared alert. She will be remembered by those who were fortunate enough to know her as an outstanding leader in our movement who did a great deal to educate fellow legislators and pave the way for the passage of our Death with Dignity law.
by Jessica Nutik Zitter, The New York Times
Five years ago, I taught sex education to my daughter Tessa’s class. Last week, I taught death education to my daughter Sasha’s class. In both cases, I didn’t really want to delegate the task. I wanted my daughters and the other children in the class to know about all of the tricky situations that might await them. I didn’t want anyone mincing words or using euphemisms. Also, there was no one else to do it. And in the case of death ed, no curriculum to do it with.
When Tessa heard I’d be teaching sex ed to her fellow seventh graders, she was mortified. My husband suggested she wear a paper bag over her head, whereupon she rolled her eyes and walked away. When the day arrived, she slunk to the back of the room, sat down at a desk and lowered her head behind her backpack.
As I started in, 13 girls watched me with trepidation. I knew I needed to bring in the words they were dreading right away, so that we could move on to the important stuff. “Penis and vagina,” I said, and there were nervous giggles. A pencil dropped to the floor. With the pressure released, I moved on to talking about contraception, saying no, saying yes, pregnancy, sexually transmitted diseases, even roofies. By the end of the hour, hands were held urgently in the air, and my daughter’s head had emerged from behind her backpack.
Sexual education programming was promoted by the National Education Association as far back as 1892 as a necessary part of a national education curriculum. As information spread and birth control became increasingly available, unwanted pregnancies dropped, and rates of S.T.D.s plummeted. In this case, knowledge really is power.
I believe that this is true of death, too.
I am a doctor who practices both critical and palliative care medicine at a hospital in Oakland, Calif. I love to use my high-tech tools to save lives in the intensive-care unit. But I am also witness to the profound suffering those very same tools can inflict on patients who are approaching the end of life. Too many of our patients die in overmedicalized conditions, where treatments and technologies are used by default, even when they are unlikely to help. Many patients have I.C.U. stays in the days before death that often involve breathing machines, feeding tubes and liquid calories running through those tubes into the stomach. The use of arm restraints to prevent accidental dislodgment of the various tubes and catheters is common.
Many of the patients I have cared for at the end of their lives had no idea they were dying, despite raging illness and repeated hospital admissions. The reasons for this are complex and varied — among them poor physician training in breaking bad news and a collective hope that our technologies will somehow ultimately triumph against death. By the time patients are approaching the end, they are often too weak or disabled to express their preferences, if those preferences were ever considered at all. Patients aren’t getting what they say they want. For example, 80 percent of Americans would prefer to die at home, but only 20 percent achieve that wish.
Many of us would choose to die in a planned, comfortable way, surrounded by those we love. But you can’t plan for a good death if you don’t know you’re dying. We need to learn how to make a place for death in our lives and we also need to learn how to plan for it. In most cases, the suffering could have been avoided, or at least mitigated, by some education on death and our medical system. The fact is that when patients are prepared, they die better. When they have done the work of considering their own goals and values, and have documented those preferences, they make different choices. What people want when it comes to end-of-life care is almost never as much as what we give them.
I am a passionate advocate for educating teenagers to be responsible about their sexuality. And I believe it is past time for us to educate them also about death, an equally important stage of life, and one for which the consequences of poor preparedness are as bad, arguably worse. Ideally this education would come early, well before it’s likely to be needed.
I propose that we teach death ed in all of our high schools. I see this curriculum as a civic responsibility. I understand that might sound radical, but bear with me. Why should death be considered more taboo than sex? Both are a natural part of life. We may think death is too scary for kids to talk about, but I believe the consequences of a bad death are far scarier. A death ed program would aim to normalize this passage of life and encourage students to prepare for it, whenever it might come — for them, or for their families.
Every year in my I.C.U. I see dozens of young people at the bedsides of dying relatives. If we started to teach death ed in high school, a student visiting a dying grandparent might draw from the curriculum to ask a question that could shift the entire conversation. She might ask about a palliative care consultation, for example, or share important information about the patient’s preferences that she elicited during her course. High school, when students are getting their drivers’ licenses and considering organ donation, is the perfect time for this. Where else do we have the attention of our entire society?
Last week, my colleague Dawn Gross and I taught our first death ed program in my daughter’s ninth-grade class at the Head-Royce School, a private, progressive (and brave) school in Oakland. In the classroom, we had some uncomfortable terms to get out of the way early on, just as I did in sex ed — death, cancer, dementia. We showed the teenagers clips of unrealistic rescues on the TV show “Grey’s Anatomy,” and then we debunked them. We described the realities of life in the I.C.U. without mincing words — the effects of a life prolonged on machines, the arm restraints, the isolation. Everyone was with us, a little tentative, but rapt.
And then we presented the material another way. We taught them how to play “Go Wish,” a card game designed to ease families into these difficult conversations in an entertaining way. We asked students to identify their most important preferences and values, both in life and as death might approach. We discussed strategies for communicating these preferences to a health care team and to their own families.
We were delighted by their response. It didn’t take them long to jump in. They talked openly about their own preferences around death. One teenager told another that she wanted to make sure she wasn’t a burden to her family. A third said he was looking forward to playing “Go Wish” with his grandfather, who recently had a health scare.
Dawn and I walked out with huge smiles on our faces. No one had fainted. No one had run out of the class screaming. The health teacher told us she was amazed by their level of engagement. It is my hope that this is only the first step toward generating wide public literacy about this phase of life, which will eventually affect us all. The sooner we start talking about it, the better.
Jessica Nutik Zitter practices critical care and palliative medicine at Highland Hospital in Oakland, Calif., and is the author of “Extreme Measures: Finding a Better Path to the End of Life.”
Reject Gorsuch: Aid in Dying
Washington state residents should be particularly concerned about the prospect of Judge Neil Gorsuch becoming a Supreme Court justice.
There are many reasons both to support or oppose his confirmation by the Senate, but one area of Judge Gorsuch’s history and judicial philosophy must be thoroughly examined. Judge Gorsuch has stated his opposition to laws which permit terminal patients to hasten their death with physician assistance — laws including Washington’s own Death with Dignity Act, passed by initiative in 2008, with almost 60 percent of the vote. Judge Gorsuch authored a book in 2006, “The Future of Assisted Suicide and Euthanasia,” in which he argued that terminally-ill patients do not have a right and should not be permitted the choice to hasten their own death with their doctor’s assistance, regardless of their suffering. To permit this, he argues, is immoral.
End of Life Washington (formerly Compassion & Choices of Washington), which drafted the 2008 initiative and monitored and oversaw its implementation, can attest that our law has helped many Washingtonians choose a peaceful, dignified death and that the imagined abuses foreseen by opponents of the law have not come to pass.
It is possible that death with dignity cases may come before the Supreme Court again, as one did in 2006 when President Bush and Attorney General John Ashcroft challenged Oregon’s law. In Gonzalez v. Oregon, the Court’s majority ruled in favor of Oregon, but that outcome is not guaranteed in the future if Judge Gorsuch advocates and votes for a different result.
The Senate must press the nominee to affirm that he will not interfere with states’ laws which give freedom of choice to their citizens. This issue affects not only Washington and the five other states — California, Oregon, Colorado, Vermont and Montana — which have legalized aid in dying, but the many other states which are considering passing similar freedom of choice laws for their citizens.
Robert Free, president, End of Life Washington
by Ann Brenoff – The Huffington Post
The title of the 2009 book written by Neil Gorsuch, President Donald Trump’s pick to fill the conservative shoes of Justice Antonin Scalia on the Supreme Court, pretty much says it all. It’s called, The Future of Assisted Suicide and Euthanasia. Not “death with dignity,” mind you, but “assisted suicide,” which is how Gorsuch sees it ― and he’s clearly not a supporter.
In his book, Gorsuch upholds the principle of patient autonomy but makes the case against legalization of the practice of terminally ill patients taking the reins of their own deaths. Gorsuch wrote that “human life is intrinsically valuable and that intentional killing is always wrong.” He maintains that while a patient’s refusal of unwanted medical treatment is morally acceptable, any intentional efforts to accelerate death are immoral.
By deeming the practice “assisted suicide,” he leaves no doubt about where he stands.
Alarmed that death with dignity measures have gained popular support and legal standing, The Federalist heralded Gorsuch’s nomination as “a great relief to have a legal expert who stands with human dignity on the Supreme Court,” citing his book for building “a case against legalization based on moral and legal arguments.”
Of course, the response from those who feel quite the opposite about death with dignity came just as quickly.
Sen. Ron Wyden (D-Ore.) voiced “serious concerns” about the Supreme Court nominee Tuesday, saying in a statement that Gorsuch’s “opposition to legal death with dignity as successfully practiced in Oregon is couched in the sort of jurisprudence that justified the horrific oppression of one group after another in our first two centuries.”
Death with dignity laws essentially allow qualified terminally ill adults to voluntarily hasten death. The practice is legal in California, Colorado, Oregon, Vermont, Montana and Washington.
The issue grabbed the national spotlight when Brittany Maynard, a California native suffering from terminal brain cancer, moved to Oregon (the first U.S. state to legally allow physician-assisted suicide) to be able to end her life. Before her death at age 29, on Nov. 1, 2014, she lobbied for California and other states to legalize doctor-assisted suicide, and her family has continued to advocate for the cause.
A 2015 Gallup Poll found that 68 percent of Americans believe doctors should be legally allowed to assist terminally ill patients in committing suicide. Now, if someone could just convince this prospective Supreme Court justice.
By Karen Shakerdge – Side Effects Public Media/Kaiser Health News
At 44, Dave Adox was facing the end of his two-year battle with amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease. He needed a ventilator to breathe and couldn’t move any part of his body, except his eyes. Once he started to struggle with his eyes — his only way to communicate — Adox decided it was time to die.
He wanted to donate his organs, to give other people a chance for a longer life. To do this, he’d need to be in a hospital when he went off the ventilator.
“I was always interested in organ donation and had checked the box on my license,” Adox said last spring at his home in South Orange, N.J., through a machine that spoke for him. He laboriously spelled out these words, letter by letter, by focusing his eyes on a tablet.
“When I got diagnosed with ALS at 42, and the disease paralyzed my entire body in six months, I definitely developed a greater appreciation of the value of the working human body,” he said.
Adox and his husband, Danni Michaeli, made a plan. They would go to University Hospital in Newark, N.J., where Adox often had been treated, and have his ventilator disconnected. The doctors there had reassured Adox he could ask to come off the ventilator anytime.
In May, his family and friends flew in from around the country, and joined neighbors for a celebration of Adox’s life. They spent one last weekend with him, planting a tree and painting a big, colorful mural in his honor. Some wore T-shirts printed with Adox’s motto, “Celebrate everything until further notice.”
Their plan suddenly changed when University Hospital’s attorneys intervened.
“At the eleventh hour, they emailed us and said their lawyers had stopped the process because they were afraid it looked too much like assisted suicide,” Adox said. “I was crushed.”
Every day, physicians withdraw life support on behalf of patients in hospitals who choose to refuse care. That’s generally not considered physician-assisted death or euthanasia, the key being that the patient is already in the hospital.
But Adox was asking to be admitted to the hospital specifically to end his life. And despite the planning, his request made some people uncomfortable.
Dr. John Bach, a professor of physical-medicine rehabilitation and neurology at Rutgers New Jersey Medical School, which is affiliated with University Hospital, was Adox’s primary physician. Bach understood and approved of his patient’s plan to end his life and share his organs.
“I could have given (him) a prescription for morphine and he could have been taken off the ventilator at home,” Bach said. “But he wanted his organs to be used to save other people’s lives.”
Other physicians at the hospital supported Adox’s plan. “We have an ethics committee that approved it 100 percent,” Bach said. “We have a palliative-care committee — they all agreed, 100 percent. But it didn’t make any difference to the lawyers of our hospital.”
University Hospital officials declined requests for comment, but Bach said the hospital’s attorneys were concerned about liability.
“The legal issue is: What is euthanasia?” Bach said. “Are you killing a patient by taking him off a respirator that’s keeping him alive?”
Previously, hospital employees had helped Adox complete an advance directive that stated, “I do not want medical treatment that will keep me alive if I have an incurable and irreversible illness and the burdens of continued life with life-sustaining treatment become greater than the benefits I experience.”
Having an advance directive on file is especially important for ALS patients, Bach said, because they can eventually become “locked in,” unable to express their wishes.
“To be locked in means you cannot move anything at all — not a finger, not a millimeter,” Bach said. “You cannot move your eyes; you cannot move your tongue; you cannot move your facial muscles at all. You cannot even wink to say yes or no.”
In this case, the hospital wouldn’t have had to rely on the directive, Bach noted; Adox was capable of expressing his wishes clearly. It troubled the physician that his patient’s wishes could not be met.
“Myself and all the other doctors that took care of him in the hospital were almost as upset about it as he and his husband were,” Bach said.
Dr. Joshua Mezrich, a transplant surgeon at the University of Wisconsin Hospital, has had patients with ALS who, like Adox, wanted to donate organs. He believes hospitals need to create protocols for these situations — even though such cases are rare.
Mezrich acknowledged this could challenge a key principle for physicians: First, do no harm. But that mandate can and should be interpreted broadly, he said.
“I think it’s fair to say that doing no harm doesn’t always mean making people live as long as possible, keeping them alive no matter what,” Mezrich said. “Sometimes, it means letting them have the death that they want, and it means letting them give this gift, if that’s what they want.”
Planning one’s death to allow for organ donation raises some thorny questions, said Arthur Caplan, director of the division of medical ethics at New York University and author of “Replacement Parts: The Ethics of Procuring and Replacing Organs in Humans.”
Typically, a separate team of physicians or an organprocurement team discusses donation with relatives after a patient dies, to avoid any hint — whether real or perceived — of coercion or conflict of interest, Caplan said.
“You’d have to change the culture of critical care and say it’s OK to talk with the person about organ donation as part of their dying,” he said.
This issue may get bigger, Caplan said, as states move to legalize physician-assisted death. There has been little public discussion because, “It’s too controversial,” he said. “If we went in the direction of bringing more people who are dying — whether it’s ALS or whatever it is — into settings where we could have them consider organ donation because they’re on the machines, we’d probably have a bigger pool of organ donors,” Caplan said.
That approach would have a downside, too, he continued. People might perceive doctors as more focused on “getting organs” than caring for dying patients.
There is at least one hospital that has established a policy for patients with ALS who want to be organ donors. Froedtert Hospital and its partner Medical College of Wisconsin, in Milwaukee, approved such a policy in May.
About a year ago, a patient with ALS wanted to donate her organs, but the hospital wasn’t able to honor her wish. The experience prompted physicians to develop a multistep system that includes evaluation from psychologists, an ethics review and that considers technical matters such as transportation or insurance coverage.
“Obviously, we’re all sensitive to any perception of assisted expedition of death,” said Dr. William Rilling, vice chair of clinical operations of radiology at Froedtert Hospital. “But, at the end of the day, the patient’s wishes count for a lot.”
After University Hospital declined to admit Adox, he and his husband contacted six other hospitals through various intermediaries. They waited for days to hear back.
In the end, LiveOnNY, an organprocurement organization based in New York City, stepped in to help. The organization’s medical director, Dr. Amy Friedman, went to visit Adox at home to vet his suitability as a donor.
“There was a hospital partner,” Friedman said, “that felt very supportive of this circumstance, understood the challenges that they would be faced with, (and was) prepared to be supportive of what Dave wanted and would be able to provide a bed.”
On the palliative-care floor at Mount Sinai Hospital in New York on May 18, Adox and Michaeli prepared to say their goodbyes.
“We sat; we listened to ’80s music. I read Dave a poem,” Michaeli recounted, close to tears. “And when they were really sure — and we were all really sure — that he was in a deep state of sedation, they disconnected his breathing machine.”
In the end, Adox’s wishes were met; he was able to donate his liver and kidneys. Michaeli said he felt “an incredible swelling of gratitude” to the hospital team that helped make that happen.
“The person we were trying to do a direct donation for was a match,” Michaeli said. “And he has Dave’s kidney right now.”
Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation. This story is part of a partnership that includes Side Effects Public Media, NPR and Kaiser Health News.
by JoNel Aleccia – NPR.org/Kaiser Health News
In the seven months since California’s aid-in-dying law took effect, Dr. Lonny Shavelson has helped nearly two dozen terminally ill people end their lives with lethal drugs — but only, he says, because too few others would.
Shavelson, director of a Berkeley, Calif., consulting clinic, said he has heard from more than 200 patients, including dozens who were stunned to learn that local health care providers have refused to participate in the state’s End of Life Options Act.
“Those are the ones who could find me,” says Shavelson, who heads Bay Area End of Life Options and is a longtime advocate of assisted suicide. “Lack of access is much more profound than anyone is talking about.”
Across California, and in the five other states where medical aid-in-dying is now allowed, access is not guaranteed, advocates say. Hospitals, health systems and individual doctors are not obligated to prescribe or dispense drugs to induce death, and many choose not to.
Most of the resistance comes from faith-based systems. The Catholic Church has long opposed aid-in-dying laws as a violation of church directives for ethical care. But some secular hospitals and other providers also have declined.
In Colorado, where the nation’s latest aid-in-dying law took effect in December, health systems covering nearly third of hospitals in the state, plus scores of clinics, are refusing to participate, according to a recent STAT report.
Even in Oregon, which enacted the first Death with Dignity law in 1997, parts of the state have no providers within 100 miles willing or able to dispense the lethal drugs, say officials with Compassion & Choices, a nonprofit group that backs aid-in-dying laws.
“That’s why we still have active access campaigns in Oregon, even after 20 years,” says Matt Whitaker, the group’s state director for California and Oregon. “It becomes a challenge that causes us to have to remain extremely vigilant.”
In Washington state, where the practice was legalized in 2009, a Seattle hospice patient with advanced brain cancer was denied access to willing providers, so he shot himself in the bathtub, according to a 2014 complaint filed with the state health department.
“Refusing to provide information or appropriate referrals directly led to the unnecessarily violent death of this patient,” said the complaint filed by an anonymous hospice nurse. “I strongly believe this constitutes patient abandonment.”
Lack of access was also an issue for Annette Schiller, 94, of Palm Desert, Calif., who was diagnosed with terminal thyroid and breast cancer and wanted lethal drugs.
“Almost all of her days were bad days,” recalled Linda Fitzgerald, Schiller’s daughter. “She said, ‘I want to do it.’ She was determined.”
Schiller’s hospice turned down her request, and she couldn’t find a local referral, forcing Linda Fitzgerald to scramble to fulfill her mother’s last wish.
“I thought it was going to be very simple and they would help us,” says Linda Fitzgerald. “Everything came up empty down here.”
Opponents of aid in dying cite providers’ reluctance as evidence that the laws are flawed and the practice is repugnant to a profession trained to heal.
“People consider it a breaking of professional integrity,” says Dr. David Stevens, chief executive of Christian Medical & Dental Associations, which has worked to stop or overturn aid-in-dying laws in several states.
But those decisions can effectively isolate people in entire regions from a legal procedure approved by voters, advocates said.
In California’s Coachella Valley, where Annette Schiller lived, the three largest hospitals — Eisenhower Medical Center, Desert Regional Medical Center and John F. Kennedy Memorial Hospital — all opted out of the new state law. Affiliated doctors can’t use hospital premises, resources or systems in connection with aid in dying, hospital officials said.
“Eisenhower’s mission recognizes that death is a natural stage of the life journey and Eisenhower will not intentionally hasten it,” Dr. Alan Williamson, vice president of medical affairs of the non-profit hospital, said in a statement.
Doctors may provide information, refer patients to other sources or prescribe lethal drugs privately, Williamson said.
“All we have done is say it can’t be done in our facility,” he added.
In practice, however, that decision has had a chilling effect, says Dr. Howard Cohen, a Palm Springs hospice doctor whose firm also prohibits him from writing aid-in-dying prescriptions or serving as an attending physician.
“They may be free to write for it, but most of them work a full day. When and how are they going to write for it?” he said. “I don’t know of anyone here who is participating.”
Patients eligible for aid-in-dying laws include terminally ill adults with six months or less to live, who are mentally competent and can administer and ingest lethal medications themselves. Two doctors must verify that they meet the qualifications.
Many doctors in California remain reluctant to participate because of misunderstandings about what the law requires, says Dr. Jay W. Lee, past president of the California Academy of Family Physicians.
“I believe that there is still a strong taboo against talking about death openly in the medical community. It feels like a threat to what we are trained to do: preserve and extend life,” Lee says, adding that doctors have a moral obligation to address end-of-life concerns.
There’s no single list of doctors willing to prescribe life-ending drugs, though Compassion & Choices does offer a search tool to find participating health systems.
“They don’t want to be known as the ‘death docs,’ ” says Shavelson, who has supervised 22 deaths and accepted 18 other people who were eligible to use the law but died before they could, most within a required 15-day waiting period.
Officials with Compassion & Choices said past experience indicates that more providers will sign on as they become more familiar with the laws and their requirements.
At least one California provider, Huntington Hospital in Pasadena, originally said it wouldn’t participate in the law, but later changed its position.
Other health systems have opted to not only participate, but also to help patients navigate the rules. Kaiser Permanente, which operates in California and Colorado, has assisted several patients, including Annette Schiller, who switched her supplemental insurance to Kaiser to receive the care.
Within weeks, Schiller was examined by two doctors who confirmed that she was terminally ill and mentally competent. She received a prescription for the lethal drugs. On Aug. 17, she slowly ate a half-cup of applesauce mixed with Seconal, a powerful sedative.
“Within 20 seconds, she fell asleep,” her daughter recalled. “Within a really short time, she stopped breathing. It was amazingly peaceful.”
Kaiser Health News is an editorially independent part of the Henry J. Kaiser Family Foundation and is not affiliated with Kaiser Permanente. KHN’s coverage of end-of-life and serious illness issues is supported by The Gordon and Betty Moore Foundation.
by Paula Span – The New York Times
Judith Katherine Dunning had been waiting anxiously for California to adopt legislation that would make it legal for her to end her life.
The cancer in her brain was progressing despite several rounds of treatment. At 68, she spent most of her day asleep and needed an aide to help with basic tasks.
More centrally, Ms. Dunning — who, poignantly, had worked as an oral historian in Berkeley, Calif. — was losing her ability to speak. Even before the End of Life Option Act became law, in October 2015, she had recorded a video expressing her desire to hasten her death.
The video, she hoped, would make her wishes clear, in case there were any doubts later on.
“She felt she had completed all the important tasks of her life,” recalled her physician, Dr. Michael Rabow, director of the symptom management service at the University of California, San Francisco. “When she could no longer communicate, life was no longer worth living.”
In recent months, this option has become available to a growing number of Americans. Last June, aid-in-dying legislation took effect in California, the most populous state. In November, Colorado voters approved a ballot measure by nearly a two-thirds majority. The District of Columbia Council has passed a similar law, and the mayor quietly signed it last month.
Aid in dying was already legal in Washington, Vermont, Montana and Oregon. So even if the District of Columbia’s law is blocked, as a prominent Republican representative has threatened to do, the country has arrived at a remarkable moment: Close to 20 percent of Americans live in jurisdictions where adults can legally end their lives if they are terminally ill and meet eligibility requirements.
The laws, all based on the Death With Dignity Act Oregon adopted in 1997, allow physicians to write prescriptions for lethal drugs when patients qualify. The somewhat complicated procedure involves two oral requests and a written one, extensive discussions, and approval by two physicians. Patients must have the mental capacity to make medical decisions.
While that process took shape in Oregon two decades ago, the cultural and political context surrounding it has changed considerably. The states recently considering the issue differ from earlier adopters, and as opposition from some longtime adversaries has softened, new obstacles have arisen.
Historically, aid in dying has generated fierce resistance from the Catholic Church, from certain disability-rights activists, and from others who cite religious or moral objections. Even the terminology — aid in dying? assisted suicide? death with dignity? — creates controversy. But the concept has long drawn broad support in public opinion polls.
Polltakers for the General Social Survey, done by NORC at the University of Chicago. have asked a representative national sample this question since 1977: “When a person has a disease that cannot be cured, do you think doctors should be allowed by law to end the patient’s life by some painless means if the patient and his family request it?”
The proportion of Americans responding affirmatively, always a substantial majority, has bounced between 66 and 69 percent for 15 years. But support was not evenly distributed: Such laws initially were enacted in states with predominantly white populations like Oregon, and to date the vast majority of patients who have used them are white.
“I hear people talk all the time about this being a rich white person’s issue,” said Donna Smith, legislative manager for the District of Columbia at the group Compassion and Choices, who is African-American. “Now, we have proof on the ground that that is not true.”
Indeed, aid in dying has expanded to more diverse locales. Non-Hispanic whites represent a minority of Californians. Colorado is more than 21 percent Latino. In the District of Columbia, nearly half of whose residents are African-American, five of six black council members voted in favor of the legislation.
State medical societies, once active foes of aid-in-dying initiatives, also have begun shifting their positions, citing deep divisions among their members. The California Medical Association, the Colorado Medical Society and the Medical Society of the District of Columbia all took officially neutral stances as legislators and voters debated, depriving opponents of influential allies. So has the state medical society in Maryland, where legislators plan to reintroduce a bill (the third attempt) this month.
The American Medical Association — an opponent since 1993 — has agreed to study whether it should also move to neutrality on physician-assisted death.
But even as the idea gains acceptance, passage of a bill or ballot measure does not always make aid in dying broadly available to those who want it. In addition to the safeguards the law requires, its practice can be balky — at least in the early stages.
State opt-out provisions allow any individual or institution to decline to provide prescriptions. In California, Catholic health care systems have opted out, predictably, but so have a number of others, including Vitas, the nation’s largest hospice chain.
Moreover, California hospitals and hospices can forbid their affiliated physicians to write the necessary prescriptions, even if they are acting privately. Some health systems with hundreds of doctors have done so. (Vermont, Colorado and the District of Columbia allow doctors to make individual decisions.)
“The shortage of participating providers has led to a lot of patient and family frustration,” said Dr. Laura Petrillo, palliative care physician at the San Francisco V.A. Medical Center, in an email.
“They had the expectation that it would be available and happen seamlessly once the law went into effect, and then find themselves needing to do a lot of legwork” to find doctors willing to prescribe lethal drugs and pharmacies to fill prescriptions, she said.
Sometimes, when patients have waited until late in their illnesses, they die before they can become eligible for assisted death. Or they become too physically or mentally incapacitated to take the drugs themselves, as legally required, even if they do qualify.
In areas where many providers opt out, very sick patients may have to travel long distances to use the law. And costs can also prove a barrier.
Some private insurers pay for the necessary doctors’ visits and drugs. In California, most do, said Matt Whitaker, state director of Compassion and Choices, the leading aid-in-dying advocacy group. But Congress has long prohibited the use of federal dollars for aid in dying, so Medicare and the Department of Veterans Affairs will not cover it. States like California and Oregon have agreed to cover the costs for Medicaid recipients; others do not.
Cost mattered less years ago, when a lethal dose of barbiturates ran a couple of hundred dollars. But in 2015, as California legislators introduced their bill, Valeant Pharmaceuticals acquired Seconal, the most commonly used aid-in-dying drug. The company, known (and condemned) for a similar strategy with other medications, spiked the price, a move Mr. Whitaker called “ethically and morally bankrupt.”
Now, patients whose insurers will not cover aid in dying face paying $3,000 to $4,000 for the drug. Valeant has denied the suggestion that it was exploiting the new law. As a result, physicians are turning to alternative — and less-well-understood — combinations of opioids and sedatives for those who cannot afford the standard medication.
Despite such obstacles and disappointments, an emboldened Compassion and Choices,, with a staff that has tripled since 2008 and an annual budget that has nearly quadrupled to $16.9 million — is eyeing its next targets. Over several years, its leaders think they can help legalize aid in dying in Maryland, Hawaii and New York.
Aid in dying, it should be noted, may be a vehemently debated issue, with campaigns that can involve thousands of participants and millions of dollars — but it ultimately has affected a tiny proportion of people.
The number of residents taking advantage of these laws in Oregon and Washington has climbed in the past two years. Still, after nearly 20 years in Oregon and eight in Washington, far fewer than 1 percent of annual deaths involve a lethal prescription. (Of those residents who do receive one, about a third do not use it.) It’s not the way most Americans choose to die, even when they have the legal option.
Yet the end of life care most people receive needs substantial improvement. While partisans fight over aid in dying, skeptics like Dr. Rabow note, the complicated and expensive measures that could improve end-of-life care for the great majority — overhauled medical education, better staffed and operated nursing homes, increased access to hospice and palliative care — go largely unaddressed.
Still, Ms. Dunning was Dr. Rabow’s longtime patient. When California’s act took effect, she began the process of requesting lethal medication. Her speech had slurred further, but not yet enough to render her unintelligible.
Dr. Rabow did not want to see her die, and he is no fan of the aid-in-dying movement. But Ms. Dunning had been clear, consistent and determined. He wrote the prescription.
“She was ready to have her life end, and no amount of support or medication or counseling would change the situation,” he said.
In September, she invited him to her home, where she planned to swallow the fatal slurry of barbiturates. On the appointed day, Dr. Rabow arrived to find “a house full of people who didn’t want her to end her life, but were there to support her and respect her well-considered decision.”
Over the course of the day, people said their goodbyes, then withdrew to leave Ms. Dunning with her closest relatives, her hospice nurse and her doctor. Her son mixed her Seconal solution and she swallowed it, no simple task for someone with advanced cancer.
She lost consciousness almost immediately and died several hours later.
“I wished she could have had a natural life span,” Dr. Rabow said. “And I would have made a different choice. But I was honored to be there to watch this very dignified woman live her life the way she wanted to.”
by JoAnn Mar – KALW.org
I thought my family had all the pieces in place, until the crisis happened and that’s when I realized how woefully unprepared we were. My 91 year old father had fallen in the early morning hours and was unable to get up from the bathroom floor.
My brother called 911 and had him taken to emergency. A few days later, my father was stabilized and was about to be transferred to a rehab center. Right before he was about to be moved, medical staffers descended on me all at once with all sorts of questions.
Should he get CPR (cardiopulmonary resuscitation) if his heart stops? Should he get electro-shock treatment? Should he be put on a ventilator if he stops breathing? Would the cure be worse than the disease? The doctor needed answers right away because she had other patients to see.
But these were life and death decisions—and I had no idea how to answer these questions. I’d never talked to my father about any of this. I felt overwhelmed—what should I do? What would he want?
Dr. V.J. Periyakoil, Director of Palliative Care, Education, and Training at Stanford University’s School of Medicine, says many family members are often confronted with the same dilemma when facing a medical crisis.
“Because by that time the patient is too sick to be able to have a voice in their own care, their family members have never had this discussion with the patient because no one guided them,” said Periyakoil. “So as a result, they’re sort of making these very high stakes decisions in the dark. They, because they love the patient so much, are caught up in the deep, emotional trauma and it’s very hard for them to be able to make decisions.”
If family members can’t speak on behalf of the patient, Periyakoil says aggressive, heroic measures will generally be used to prolong the patient’s life.
“The system default is to do everything possible, every treatment possible, even though the treatment might be ineffective and the treatment may be something the patient doesn’t want,” said Periyakoil.
I found out later than if CPR is used on a frail person like my elderly father, it might do more harm than good. CPR involves pushing down into the chest at least two inches deep and at least 100 times per minute. Then, an electric shock is sent to the heart to get it to beat again. If CPR is successful, all that pounding on the body usually results in major trauma, including broken ribs, bruised lungs, and bleeding. The odds of my father leaving the hospital would be very low.
Yet, because of my ignorance, I almost checked off the “yes” box to CPR.
My father’s primary care physician and I should have sat down with him long ago and figured out what he’d want at this stage in his life. Maybe he’d want every life-prolonging procedure possible, including CPR. Or maybe not. The only way to find out is to ask. Advance care planning starts with a conversation, that would have given my father the opportunity to tell us if he wanted invasive treatments such as CPR, electro-shock, feeding tubes, ventilators, or IVs .
NBC Former Anchor Tom Brokaw Plans Ahead
Jennifer Brokaw made sure her father went through advance care planning, well in advance of a medical crisis. Her father is former NBC anchor Tom Brokaw. Jennifer is an emergency care physician and patient advocate in San Francisco. In 2012, she conducted an advance care planning discussion with her father at a TEDx talk at Stanford University.
“People who have prepared some sort of statement leave their families in much better shape, emotionally and financially, than those who haven’t,” said Dr. Brokaw.
Her father agreed that advance care planning is important.
“There’s a fixed certainty we’re all going to have to deal at some point in our lives sooner or later with a lingering illness or certainly with death,” he said.
During their on-stage discussion, Tom Brokaw made it clear he didn’t want his life prolonged at all costs.
“I want to be conscious and I want to be able to talk and communicated with the people I care about,” he said, “I think a lot about severe spinal cord injuries and if I’m confined in some way at this point in my life, I don’t want heroic efforts just to keep me alive on a resuscitator.”
Two years after their TEDx talk, the unexpected happened. Tom Brokaw was diagnosed with multiple myeloma, a form of bone cancer that attacks the spine. After the initial shock wore off, Brokaw worked with his doctors on a treatment plan to manage the disease. He opted against a stem cell transplant operation because of his age, the risks involved, and the long and difficult recuperation period.
His daughter Jennifer says that advance care planning gave him important guidance and psychological preparation for the critical decisions he needed to make.
“He was able to think about this cancer in a less scary and more organized way,” she said.
A recent study at a major palliative care symposium shows that having end-of-life conversations with patients can reduce their stress and anxieties. Tom Brokaw was fortunate to have a doctor in his family as his patient advocate.
The vast majority of Americans do not have conversations about end-of-life care with their doctors, particularly people who are younger, poorer, minority, and less educated. Death is an uncomfortable topic for most people. Dr. Jennifer Brokaw says many doctors tend to shy away from delivering bad news.
The Medical Community’s Efforts To Promote Advance Care Planning
To encourage advance care planning, Medicare recently announced it will reimburse physicians and medical professionals for conducting end-of-life conversations. The problem is, most medical professionals have had little or no training in advance care planning or how to converse with patients.
However, medical schools such as U.C. San Francisco and Stanford University are now offering courses on advance care planning and communication skills. Both Stanford and UCSF use immersion learning techniques that involve medical students participating in class exercises with their fellow students and role-playing with actors, sometimes in front of video cameras.
In Dr. Brook Calton’s UCSF course on advance care planning and improving communication skills, medical students are learning how to carry on conversations by taking turns playing the roles of patients and doctors. Empathy and sensitive language are important when talking to dying patients and their families. Calton told her students that in the past, most physicians had paternalistic attitudes and “I know what’s best ” and “This is what you have to do.”
Those attitudes are starting to change but Calton says even today, many doctors tend to interrupt their patients and not listen. Her students are learning to listen closely to patients and converse with them, using simple language without the medical jargon. Open-ended questions such as “What brings you joy?” or “If time were short, what is most important to you?” are good ways to start a conversation. That can lead the way to more difficult follow-up questions such as “We’re worried you’re not getting better. What do you know?” and “How much do you want to know?”
Carrying on an end-of-life conversation can be difficult and awkward at first. It takes skill and patience to find the right language.
“You feel tongue-tied, telling a patient, because you don’t know whether they will start crying,” said Stanford’s palliative care director Periyakoil, “You don’t know whether you can control your emotions, so it’s incredibly important to role-play this.The key is, you need to be able to voice these words out loud, in a safe environment where you’re not talking to a real patient. Because you don’t want to be with a real patient who’s in distress, try your skills, and get it wrong.”
It’s Never Too Soon To Start The Conversation
Advance care planning is not just for the elderly or the terminally ill. Death can occur at any age and it’s good to be prepared, in case the unexpected happens.
In her role as a palliative care specialist at UC San Francisco, Dr. Dawn Gross has led many end-of-life conversations with patients of all ages. On her KALW call-in show “Dying To Talk,” Gross recently led an on-air advance care planning discussion with her two teenage children Josh and Isabell.
Gross wanted to make sure they know and understand their parents’ final wishes, without all the guessing and uncertainty.
“The best way to free us is to have these conversations, so that we can find ways to honor peoples’ lives,” said Gross. “This is so not about ‘how do you want to die’ because we have no control over that. It’s how do you want to live until you die and the only way to know is to talk about it.”
My father and I never had that discussion. After spending nearly a month in a skilled nursing facility following his collapse, he was more than ready to go home. We dodged the bullet this time. But my father is nearing the end of his life. Issues around CPR, shock treatment, and ventilators will come up again and I still have no clear answers.
My father is now very frail and has dementia. It’s too late to have that end-of-life conversation. Complex questions are now beyond his comprehension. Like many family members who waited too late, I’ll have to make my best guess at what his wishes would be when we cross that bridge.
JoAnn Mar’s report is part of The End-Of-Life Radio Project, made possible by a grant from the Association of Health Care Journalists and The Commonwealth Fund.
Peter Granitz, NPR.org
Desmond Tutu, South Africa’s former Anglican archbishop and a Nobel Peace Prize laureate, recently celebrated his 85th birthday with an interesting message: He wants the option of an assisted death.
Tutu has largely retired from public life, but is still considered the moral conscience of South Africa for his leading role in the fight against apartheid. Some were taken aback when Tutu said he wants the option to end his life when he chooses.
“As a Christian, I believe in the sanctity of life, and that death is a part of life,” Tutu said in a recent video. “I hope that when the time comes I am treated with compassion and allowed to pass on to the next phase of life’s journey in the manner of my choice.”
An assisted death is currently illegal in South Africa. The Supreme Court of Appeal reaffirmed that stance in December when it struck down a lower court’s ruling that granted an applicant the right to euthanasia.
Tutu, who has lived with prostate cancer for decades and has been in and out of the hospital in recent years, says he supports efforts around the globe to legalize the procedure.
“I pray that politicians, lawmakers and religious leaders have the courage to support the choices terminally ill citizens make in departing Mother Earth with dignity and love,” he said.
Tutu made that video for advocacy groups that support so-called death-with-dignity laws.
At the St. Alban’s Anglican Cathedral in the capital Pretoria, the organ starts to play as parishioners file into the century-old stone church, which sits among tall government buildings.
Musima Gwangwa, who is attending the service, says Tutu’s leadership in ending apartheid, and the stances he has taken on human rights around the world, serve as a model that Anglicans like her should try and emulate.
“He’s more than an icon for us,” she says, adding that she supports his position on euthanasia.
Not all parishioners agree. For Richard Botha, the archbishop’s decision is a confounding one. He calls Tutu a global elder and someone who is willing to call out leaders for poor judgment.
But Tutu’s support for euthanasia does not comport with Botha’s religious beliefs.
“I won’t remember him for that. I will remember him for his credentials and his human rights struggle,” says Botha.
Tutu has largely stopped giving interviews and declined NPR’s request.
But he’s been making his feelings known in editorials in which he described as “disgraceful” Nelson Mandela’s final days before his death in 2013. He described how Mandela, widely known as Madiba, was used as a political prop in photo ops, despite being unable to communicate.
“It was an affront to Madiba’s legacy,” Tutu wrote in The Guardian newspaper in 2014.
He went on to argue that South Africa needed to revisit its laws regarding a person’s right to die.
South African judges wrote in their recent ruling that they would welcome action by Parliament, meaning the legislature, and not the courts, should determine whether euthanasia will be permitted in South Africa.
Advocates for assisted death could take the case to the Constitutional Court.
Whatever the outcome, right-to-die advocates say Tutu’s support for the issue can guide conflicted people across the globe.
“It helps to hear a person who has dedicated his life to religion, and about whom there’s no question they are deeply religious, say there’s no incompatibility in religious faith and medical aid in dying,” says Barbara Coombs Lee, who leads Compassion and Choices, a group that lobbies for assisted death in the U.S.