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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.

by Vincent Mor – Health Affairs Blog

In Anne Scitovsky’s 1984 review of end-of-life health care costs she too wondered why the issue was receiving increased attention just then. Perhaps, she thought, the impetus was that health care expenditures had recently risen to 10 percent of GDP. But it was more than that. Hospice coverage under Medicare was introduced just a year earlier, many papers looking at escalating end-of-life costs for cancer patients were being published, and professional and popular books and movies on death and dying were appearing almost monthly. The tone was clear: If only patients were told the truth, they would never choose treatments that were worse than the disease.

A decade later, Congress passed the Patient Self Determination Act with high hopes that requiring hospitals to ask patients if they’ve thought about their care preferences would cause undesired and unplanned intensive health care utilization to diminish. However, to the disappointment of many, paper compliance became the rule rather than the exception.

The current resurgence of discussions about end-of-life care is characterized by a broad-based interest in the end-of-life care as evidenced by “the Conversation Project” (also ‘Death Café’ movement) that columnist Ellen Goodman began with many associated state and community level adherents; state “right-to-die” legislative efforts; a demonstration mandated by the Affordable Care Act that allows hospices to provide palliative care to patients still receiving disease-specific treatment; and, of course, the National Academy of Medicine report, “Dying in America,” published in 2014. While the recent focus on end-of-life care is partly rooted in concerns over costs, much of it reflects a desire to ensure that the care people receive is consistent with their preferences.

Each historical wave of interest in end-of-life care has attributed much of the high and undesired health care costs associated with that care to a culture that denies the inevitability of death. Perhaps this is why, in spite of the ebb and flow as well as the intensity of these discussions since the beginning of the hospice movement in the late 1970s, the medical arms race has continued apace with persistent growth in the number of intensive care unit (ICU) beds, increases in the numbers of dying patients using post-acute care, and increases in the proportions of the “oldest old” receiving open heart surgery or pnuemonectomy. At the same time, the proportion of Medicare beneficiary decedents receiving the Medicare hospice benefit has grown. This suggests a tendency for patients to demand and for providers to comply by offering more and more services of all sorts. Whether the supply of aggressive treatments arises in response to the public’s demand for them or to health care reimbursement incentives that induce providers to offer such treatment continues to be hotly debated.

Regulatory and reimbursement system responses to underlying concerns about end-of-life care preferences, ranging from the introduction of the Medicare hospice benefit to the passage of the Patient Self Determination Act, have been easily absorbed into the bureaucratic health care delivery system. Despite good intentions, these regulations enable patients, families, and their multiple physicians to avoid having real conversations about the things that they don’t want to imagine: having a terminal illness, failing the second line treatment, not having a standard treatment option available, or—more to the point—facing death. Despite the implementation of initiatives ranging from the Patient Self Determination Act to the recent coverage decision that pays physicians to discuss advance care planning, there doesn’t seem to be much change in the likelihood that frail older patients enter ICUs.

The introduction of the Medicare hospice benefit, praised as a major advance in offering patients’ choice (I was there from the beginning so have a unique perspective on its evolution), had the unintended consequence of divorcing end-of-life care from the rest of the medical care system. It became a separate silo. Patients referred to hospice tend not to be seen by their regular physicians, and the hospice becomes fiscally and clinically accountable for virtually all care the patient receives, reinforcing hospice’s isolation from the rest of the health care system. This lack of accountability (and by implication, continuity) across the period of advanced disease management and end-of-life care creates impediments to smooth care coordination.

Dying patients discharged from the hospital often elect to receive the skilled nursing facility benefit in a nursing home rather than the hospice benefit. They do this to avoid having to pay privately for the room and board costs of being in a nursing home while also receiving the Medicare hospice benefit. Under Medicare, one can’t receive the skilled nursing facility and hospice benefits at the same time, even though hospice may be more consistent with patients’ end-of-life needs.

Since the Medicare hospice benefit is capitated with respect to the patients’ terminal diagnosis, by electing hospice patients must make the terrible choice to forgo disease-directed treatment and embrace “comfort care.” Concurrent hospice care and disease modifying treatment may actually improve outcomes at no increased health care costs, but evidence of this is limited to a small number of controlled studies in unique health care environments. Advocates hope that, on average, allowing people to have both treatment and palliative and hospice care at home would not increase costs. Whether this is wishful thinking probably depends upon the payment incentives and not just patients’ wishes.

Here are the challenges: How do we restructure our health care financing and delivery system to offer patients choice without inducing either excess utilization that has virtually no chance of positively influencing outcomes or consigning them to end-of-life “specialists”? How do we avoid looking back in 2030 when the next wave of interest in end-of-life care bubbles up and wondering how and why our current fixes didn’t address the fundamental problems? How can we care for people who opt out of high-intensity, low-yield care without putting them on the proverbial ice floe to drift alone toward death? What needs to happen to improve coordinated care and offer care that goes fully through the life cycle rather than diverting the dying to a different system?

Over the next several years as Medicare and private insurance plans grapple with this issue, policymakers will have to make choices ranging from requiring hospice to be included in Medicare Advantage benefit plans to including hospice services under all accountable care organizations. Indeed, creative health care systems could even begin to break down the walls of the silos that our idiosyncratic reimbursement system have created. Then we might see the day when referral to a palliative care specialist would not be seen as “giving up” on the patient but caring for the whole patient regardless of the immediacy of a limited prognosis.

In July of 2017, Health Affairs will be publishing a special issue supported by the Gordon and Betty Moore Foundation that will focus on end-of-life care and serious illness. In anticipation of that event, I’ll be writing several more Blog entries devoted to reflections on the policy challenges that underlie our discussions of such care. Ranging from the difficulty of measuring end-of-life care quality to the difficulty of ensuring continuity of care just when the need for specialized advice and management is at its highest, these blogs will call attention to the contradictory system of incentives and requirements that makes it so difficult for our health care system to meet patients’ needs in the last stages of life. As one who has been examining these issues for nearly 40 years, I’m delighted that Health Affairs has chosen to highlight this theme.

by JoNel Aleccia – Kaiser Health News

As Colorado’s aid-in-dying law takes effect this month, proponents say they’ll make sure terminally-ill patients have access to a new, affordable drug concoction that will avoid the $3,000 cost of a common lethal sedative that has skyrocketed in price.

Officials with Compassion & Choices, an advocacy group, are reaching out to pharmacies statewide to confirm that they’ll stock components of a lethal four-drug cocktail to substitute for secobarbital, known as Seconal, the pricey sleeping pill most often prescribed to induce death.

It’s the second time in a year that right-to-die advocates have come up with a substitute for Seconal after Canadian drugmaker Valeant Pharmaceuticals International Inc. acquired the medication in February 2015 — and abruptly doubled the $1,500 retail price.

“We were looking for something more affordable and available,” said Kat West, an attorney and policy expert with Compassion & Choices.

The new law, which was passed by a two-thirds majority, was signed into law on Dec. 16 by Gov. John Hickenlooper. Colorado joins five other states — Oregon, Washington, Vermont, Montana and California — in which terminally ill patients, usually those expected to live six months or less, can choose to take doctor-prescribed drugs to end their lives. In Oregon, at least 991 patients have died after taking drugs prescribed since the law took effect in 1997. In Washington state, at least 917 have died under terms of the law enacted in 2009.

Access to the medications can depend, in part, on cost. Many health insurance plans pay for aid-in-dying drugs, advocates said, but some don’t, and the medications aren’t covered by federal programs such as Medicare or Catholic-run health care systems. Medicaid programs for the poor and disabled in Oregon and California will pay, but not those in Washington state, Vermont or Montana. In Colorado, it’s still unclear.

That can create a barrier for terminally ill patients who want to use the law, said Beth Glennon, a client-support coordinator for End of Life Washington, an advocacy group.

“The cost does affect people’s decisions,” Glennon said.

As of March, the latest data available, a bottle of 100 capsules of 100-milligram Seconal had a retail price of $3,082, according to data from Truven Health Analytics. Ten grams is a lethal dose.

When Oregon’s law began, the cost was about $150, recalled Dr. David Grube, national medical director for Compassion & Choices and a family doctor who has practiced in the state for nearly 40 years. He calls the price hikes “an almost-evil practice of greed.”

“I think it’s the black side of capitalism,” he said. “It really breaks my heart.”

Valeant officials didn’t respond to requests for comment, but in March firm officials issued a statement saying that secobarbital is approved only for treating short-term insomnia, epilepsy and for use in pre-operative anesthesia.

“If it is being prescribed for off-label uses, it is not something for which the product is manufactured or intended,” the statement said.

To fight the high prices, doctors in Washington state experimented last year with a cheaper mixture that included three drugs — phenobarbital, chloral hydrate and morphine sulfate. The components are widely available and cost about $500 for a lethal dose. But the combination turned out to be too harsh, said Dr. Robert Wood, a volunteer medical adviser for End of Life Washington.

“The chloral hydrate mixture was too caustic for some folks and our volunteers didn’t like using it,” because some patients became distressed, Wood said.

Most doses of lethal medication are bitter, often requiring patients to take anti-nausea drugs. But the new mixture was not only bitter but also caused a burning sensation in the mouths of some patients, said Glennon. “There was some profound burning,” she said. “We didn’t like working with it. As a volunteer, you want to reassure people. We’re about a peaceful, dignified death.”

Wood and his colleagues came up with a new option this summer, a four-drug mixture that includes diazepam, digoxin, morphine and propranolol, known as DDMP. It costs between $300 and $600.

The mixture, which puts patients to sleep and then halts their heartbeat and breathing, has been used 38 times so far, Wood said.

“It is no more difficult than Seconal to ingest and it seems to work quite well,” he added.

The mixture has been used “a fair amount” in California, where an aid-in-dying law took effect in June, said Grube. It’s not yet known how many terminally-ill patients have died under that state’s law, but dozens have requested prescriptions, officials said.

Valeant was widely criticized for raising the price of secobarbital, a popular sedative in the 1960s and 1970s that lost its patent status in the early 1990s. It has been used for aid-in-dying patients since Oregon passed the first U.S. law in 1997, which was modeled on similar action in the Netherlands, where secobarbital was the drug of choice.

Another sedative, pentobarbital, was also frequently used, but supplies in the U.S. became expensive and scarce after European drugmakers objected to its use as an execution drug in death penalty cases.

Doctors and pharmacists are not obligated to participate in aid-in-dying treatment under existing laws, including the Colorado action. In a recent poll, about 40 percent of more than 600 doctors surveyed said they would be willing to prescribe lethal medication, 42 percent said they wouldn’t and 18 percent weren’t sure, noted Dr. Cory Carroll, a solo practice family physician in Fort Collins, Colo., who endorsed the measure.

“The docs that are in opposition have a right to their beliefs, but they don’t have the right to control others,” Carroll said in a recent press conference.

West of Compassion & Choices anticipates that Colorado’s law will be used immediately, as similar laws in other states have been.

“We’re already getting calls from terminally ill people in Colorado who want to access this law,” she said. “I fully expect people to begin requesting prescriptions.”

by Arthur L. Caplan, PhD; Timothy E. Quill, MD – Medscape.com

Editor’s Note: Arthur Caplan, PhD, interviewed Timothy Quill, MD, as part of the Medscape video series Both Sides Now. Only a portion of Dr Quill’s interview could be included in the video because of time constraints. Here, we are posting the interview in its entirety. In the coming weeks, we will post interviews with other speakers in that video.

Arthur L. Caplan, PhD: It’s my great pleasure to have as a guest on this difficult topic one of the leading voices—for many decades—in physician-assisted dying, Dr Tim Quill. He is a professor at the University of Rochester School of Medicine. He is also the director of the Center for Ethics, Humanities and Palliative Care, and he is board certified in palliative care. It is a pleasure to welcome you to the program. I can’t think of a better voice to listen to about some of the complexities of these issues. Thanks for coming.

Timothy E. Quill, MD: Glad to be here. Thanks for having me.

Physician-Assisted Dying vs Physician-Assisted Suicide
Dr Caplan: Let’s have you do a little cleaning up of the landscape. What is the difference between physician-assisted dying and physician-assisted suicide? Both terms are around. How do you differentiate those in your mind?

Dr Quill: Many times, the two terms are conflated. Those who believe that this should be a legal option prefer to use the language “physician-assisted dying” rather than “physician-assisted suicide.” Why is that? Well, suicide equates the act with mental illness and with people who have other choices. An important fact is that other languages have more than one word for suicide. There can be rational suicide. There can be heroic suicide, the warrior jumping on a bomb. And there might be suicide for mental illness. The opponents of physician-assisted death would like it to be called “physician-assisted suicide” because they want to equate it in some sense with mental illness.

Dr Caplan: When you say mental illness, do you mean depression?

Dr Quill: Depression, psychosis, an act that makes no sense and could be prevented by good medical care. People who are advocates see it as a possible rational approach when suffering is very hard and there aren’t a lot of other good options. We know that it can be rational because we’ve met people who are in that circumstance who have asked for our help.

Dr Caplan: Do you think there’s a subtle difference in terms of the role of the doctor in physician-assisted dying? People are going to die. For physician-assisted suicide, maybe they’re not terminally ill.

Dr Quill: I suppose it could be the lack or the potential absence of terminal illness. Physicians are also regularly involved in helping people to die. I work in palliative care in hospice. You can take a frame on that to say that we’re at least in part helping people to die better. That’s what we do. So, you want to be sure that you know what we’re talking about as well. There is some issue of clarity that could be an argument in this debate in terms of language.

Palliative Care
Dr Caplan: Your field has evolved a lot over the past couple of decades. I think it would be fair to say that you’ve been a pioneer in palliative care as well. We’ve certainly seen palliative care spread out into American healthcare. Not that it’s where it should be everywhere, but it’s certainly available starting earlier for many people. Some physicians are going to say, “Why do we even have this discussion about assistance in dying if we have palliative care?”

Dr Quill: Well, palliative care is the floor in this discussion. If somebody is talking about being ready to die, suffering that was uncontrollable, the first step is usually a conversation about whether they have pain that we could be relieving. We ask them what makes it so unacceptable. What’s the worst part? Tell me more. Tell me more. Most of the time, you’ll learn that they were having pain that they weren’t telling us about that we can address, or shortness of breath. It might be that they are having some spiritual issues and they need to have a talk with their rabbi or their clergyperson, but it also may be that they have reached the end of their tolerance for this process.

Dr Caplan: Do people sometimes reach the end of tolerance for palliative care?

Dr Quill: Absolutely. For example, take people on life support, where we have a settled moral and legal groundwork. The debate 25 years ago was, “How could you possibly allow people to stop life support when they might be coerced?” The answer is that those risks are potentially there, but the best protection is an open process. Make sure that everybody who is thinking about it has access to palliative care, that they have access to the best medical care possible, and then once you’ve made sure that all those things are there, the next step is to listen to the patient. It’s the patient’s life. It’s the patient’s death. That has actually served us very well in the stopping-life-support zone. I think that’s the model we should be using in this zone as well.

Dr Caplan: Do you think that’s the best reason to try to make physician-assisted dying available—listening to the patient and trying to honor what they want?

Dr Quill: Absolutely. When you take a look at Oregon, where this is legal, there’s a lot of thinking about this issue. It’s more out in the open in Oregon. So, what happens in Oregon? One in 6 talks to their families about it. One in 50 talks to their doctors about it. It accounts for probably 1 in 500 deaths. There’s a lot of talk here, a lot of negotiation, and not a lot of action around that particular act. Now, if you take a look at those patients, might they be assisted by other, more openly accepted mechanisms? The answer is, absolutely. Sedation, stopping life support—areas where we have agreement and pretty open practice.

Risks and Concerns
Dr Caplan: I know that you have argued over the years for making some forms of physician-assisted dying available. What makes you worried about it? What’s your biggest concern about doing that?

Dr Quill: I suppose you could make it too easy to access. You could make it so that it’s made available to people who might have responded to other things. Again, I think this is inherently a hard process. I’ve had this conversation with many people. None of them really wanted to die. If I had anything meaningful to offer them, they would have been there 10 times over. So, these are folks who don’t have any good options, and I really do think that that’s the case. I do believe that an open process is key here, because for most of the people that I’ve met, we’ve been able to find fully acceptable alternatives by just looking at all of the options, intensifying palliative care, and having an open process. I can tell them about their options. If I am going to provide one of the last-resort options, I can get second opinions to make sure that I’m seeing everything clearly. Even with my own primary care patients, sometimes when they’re stopping life support and I’ve been caring for them and I was on the inside, I might like to have another outside person make sure that the time is right. Let’s make sure that there aren’t confounding variables that might be altering the decision-making. So, I might have either a palliative care type or an ethics type come and see the patient to take a look and make sure that we’ve crossed all the T’s, dotted all the I’s. It’s very helpful.

Dr Caplan: I’m not trying to put you on the spot, but I’m just curious: People do make requests?

Dr Quill: Yes.

Dr Caplan: How do you respond to them initially?

Dr Quill: I ask them to tell me more about it. Tell me why this is happening right now. Tell me why you didn’t want this a week ago. Why don’t you want to put it off for another period of time? Tell me more. What’s the hardest part? What things have you tried and what have you done? Have you talked to your family about this? Have you talked to your religious person about this? We’ll have a very wide-ranging data gathering so that I really understand where this is coming from. That also tells me what I can potentially fix without assisted dying. I’m looking to try to fix anything I can fix and make it better in any way that I can, but I’m also listening to make sure that this is consistent with who they are as a person. If it was somebody who was very religious in a way that they would have never accepted this but now they’re requesting this, I’m going to need to really understand that. If they were longstanding members of the Hemlock Society, I’m going to say, “Okay, I understand where you’re coming from. You’ve been thinking about this for a long time, but have you looked at all the other options?” I want to understand it as thoroughly as I can.

Dr Caplan: So, in ethics terms, you’re concerned about authenticity. Is this an authentic, real reflection?

Dr Quill: Correct. I also want to be sure that the things that are fixable with other palliative care measures have at least been thought about, if not tried.

Dr Caplan: I get asked this a lot, and I think people would be interested in your thoughts about this: What can be done upstream to better prepare? We hear about filling out your living will or getting paid under Medicare to have discussions about planning end-of-life care. What’s your suggestion, having been around this area for so long? What could the primary care person do to make your job easier?

Dr Quill: Truthfully, I’m not entirely sure that we can put this on the backs of the primary care folks. I think their backs are pretty weighted down at the moment. Also, these discussions are different if they’re hypothetical versus if they’re real. I think having the hypothetical discussion is great. I’m not sure that it necessarily has to be in a doctor’s office. I think we should be redoubling and tripling our efforts in churches and synagogues and temples to have a richer discussion about this. That would do a huge amount of good in this regard. This is about palliative care and hospice. I gave a grand rounds this morning. How many of the trainees had an advance directive themselves? About 2%.

Dr Caplan: People hear about Oregon, Washington, California, and Vermont having legalized forms of assisted dying. Do you think this is something that we should be emulating in other states? Is that coming, and would you support that?

Dr Quill: I do support that. We now have 20 years of data from Oregon, and the practice is being studied on an ongoing basis. The frequency has gone up slightly (as would be expected, in my opinion), but people are going through the process. They’re meeting the criteria. Of the people who get the prescription, only about two thirds of them actually take it. So, for some people, having the possibility is what they really need.

Dr Caplan: Kind of a parachute.

Dr Quill: A security blanket, yes.

Dr Caplan: A rip cord.

Dr Quill: Yes. It’s hugely reassuring to them. It would be reassuring to me, frankly, if I were in that circumstance. I think it’s working well there. Palliative care has also grown there. You want to have strong palliative care, but should we wait until palliative care is perfect everywhere? That’s an unrealistic expectation. We don’t wait for that before we stop life support. If you’re going to stop life support, make sure you get palliative care involved so it’s not being done for the wrong reasons. It’s similar with this. Make sure that people who have experience in palliative care provide input and consultation before you do it.

Criticisms and Legal Issues
Dr Caplan: There are criticisms of the practice where it is legal. One that I would be interested to hear your thoughts about is that there’s not enough psychological consultation, where doctors are seeking a psych consult as part of what’s going on. They’re not where they should be. What’s your response to that?

Dr Quill: That’s a tough question for a variety of reasons. Number one, there frankly are not a lot of psychiatrists who are used to seeing patients who are this sick. The number of psychiatrists who are used to seeing people this sick is too small. Also, there is a normal depression that can occur. People who are thinking about this are not happy.

Dr Caplan: Right.

Dr Quill: I do think that there are some cases where you really need to have a psychiatric consultation. They are usually people with longer-standing psychiatric illness or people for whom this is completely out of character. I think those would be good ones, but requiring a psychiatric consultation on every patient going through this is not realistic. The palliative care consultation is a better requirement because we are used to seeing people who are quite sick. We are used to doing psychological assessments on them as part of what we do. So, to me, the gold standard should be the palliative care consult, and then if there are psychiatric issues, get a second consult for those cases.

I think the best path in the United States is to pass laws state by state until there are enough states that it becomes unfair. You still have the question of how you’re going to deal with this in the states where it’s illegal. We have developed some new options for that. Sedation is much more available now.

Dr Caplan: Yes—tell us a little bit more about that.

Dr Quill: For the toughest cases in New York, particularly of overwhelming physical suffering or even delirium, you can provide a modest amount of sedation, putting people in a relative state of sleepiness. In the severe cases, you can go right to sedation to unconsciousness. That appears to be the Supreme Court decision in 1997.

Dr Caplan: The Supreme Court of the United States.

Dr Quill: Yes. In one of its examples, they said we are able to do that. Again, there’s no real basis in law for that, but that is what is said and we’re practicing as if that’s the case. That gives you a tremendous amount of tools to deal with the toughest cases, and that’s what we do. It doesn’t give you a tool to deal with the patient who is asking you quite directly, who might not be suffering overwhelmingly at the moment, because they don’t qualify for terminal sedation. They’re suffering. They’re worried about suffering down the road and they’ve had enough now, so it’s a mix of psychological and physical suffering. It doesn’t answer that small question.

Dr Caplan: A very common criticism that swirls in this debate is that physicians should do no harm. That goes all the way back to Hippocrates. How do you respond to those who say that doctors can’t commit harm by assisting in dying?

Dr Quill: It would be difficult for me to construe addressing the suffering of a terminally ill patient in some way as a harm. It’s really an obligation. The question is, how can we respond to those kinds of suffering? We are involved in helping people die all the time. Why do we do that? Because we take care of people who are dying. Part of our job, in my opinion, is helping people die better. Again, I say that in a direct way because it irks me when we say that doctors shouldn’t help people to die.

Dr Caplan: Help them to die versus cause their death.

Dr Quill: There are distinctions to be made, but the way to be sure you won’t help anybody to die is to step out of the case as people start to die, which is the norm. It’s the norm now. So, you’re fighting against a disease. You’ve got doctors lined up to take care of you. You decide to stop treatment? Everybody disappears. We need people who are committed to caring for people all the way through to their death as if they were family members, being committed to relieving their suffering. Sometimes that requires helping people to die. It’s not a happy day when we’re taking people off life support. We don’t like to do it. We dream about that afterwards sometimes, but we do it because we have to do it, because the patient is saying that they don’t want it anymore or they’ve had it. We understand it. We all talk about it. We make sense of it and we support each other. Again, we have to do these things. Now, in Germany, aid in dying is legal, but they don’t have doctors do it because of the history there.

Dr Caplan: Yes.

Dr Quill: They have other people who do it. A system could be set up in the United States whereby you provide access, certify, and have another group do it. If you really feel that the issue is that doctors shouldn’t do this in this particular case, there is a solution to that.

Dr Caplan: Right. Switzerland does it that way, too.

Dr Quill: Yes.

Dr Caplan: Let me take you down two paths as we move towards the end of our discussion. One is that people are worried about where we’re headed relative to the cost of healthcare driving people toward requesting assistance in dying because they’re worried about financial toxicity. They’re worried about going broke. They’re worried that although they could try any number of expensive biologics or immunotherapies, they can’t afford those things or the copays are enormous. “I’m taking my grandkids’ future away. They can’t have tuition.” How does that mix in with our thinking about assisted dying down the road? Does it concern you?

Dr Quill: Hypothetically, it concerns me. In reality, I just don’t see it. I see people getting impoverished in these huge medical adventures at the end of their life because even though healthcare pays for some fraction of these adventures, it’s not paying for all of it. There’s a lot of money being spent. If you’re middle class or lower middle class, you’re going to get impoverished. People aren’t choosing this option instead of going that route. They’re choosing that route. It’s the same issue along life support. They’re our most expensive patients. You would think that they would be going off like crazy. They are not. It requires a big, long process. So, it’s a theoretical risk. It’s inherently hard to do and people love life enough. They want to live as long as they can. Even people who want this as an option are usually those who have had some big medical adventures until they got to the point that they’re done. They just want to skip the last part, the really hard part, the part where they’re really dependent, the part where they’re really suffering and not in charge. The people who want this option are the in-charge people, by and large—at least in the United States.

Suffering and Religious Views
Dr Caplan: Let me end with this notion of suffering. Some would say that we’re too conservative in these states that have legalized. The trigger is terminal illness. We talk about 6 months to live. We could argue about whether that’s predictable or meaningful, but put that aside. In some parts of Europe and in Canada now, people say that the issue is suffering. It isn’t about whether you’re terminally ill or not. If I’m going to suffer from horrible depression, if I’m going to suffer from whatever it is that makes me suffer terribly, I don’t have to be terminally ill. Shouldn’t I be able to get some help from a physician?

Dr Quill: Yes, you clearly should. The question is whether you should be allowed to get this kind of help. Suffering is a very broad concept. In my opinion, the more you have terminal illness with severe physical suffering as a major piece of the puzzle, the more you’re on solid ground. The more it’s psychological or spiritual suffering with less physical suffering and less terminal illness, the more the population gets bigger and the uncertainty about evaluation gets more difficult. So, that is clearly a big problem that needs to be addressed. I don’t think this is an option to address, personally. That envelope will get tested as we move along with this, so we are going to need to find edges to it. Severely terminal illness is a good edge. It’s not the firmest edge in the world, but it’s a good edge, and predominant physical suffering as a piece of the puzzle seems to me a good edge.

Dr Caplan: For many people, this area of assisted dying and managing dying ties up in their religious points of view. For some, suicide is just not an option from a religious point of view. They don’t want to see it enter into public policy. There is opposition that says that it’s just against faith to do this. How do you handle that?

Dr Quill: Well, we do live in a secular society, number one, so we need to broaden our minds and think about the religious positions and spiritual positions of the particular people involved. If a particular physician found a request to be unacceptable from a moral point of view but the request otherwise made sense, the physician should do the full evaluation of the patient and try to find alternatives. But if the patient persists, then I think doctors shouldn’t do things that are outside their moral boundaries.

Dr Caplan: Do you think they have a duty to tell the patient about options if they won’t do it or if it’s against their religion?

Dr Quill: I personally think that they have a duty to tell people about the legally available options, and if they can’t provide them, then at least inform them that they could find another physician. If a patient wanted to know a doctor’s point of view on this early on, which does happen, and the doctor said, “I can’t do that,” that is a very important thing for a patient to know early before it comes down to needing it. I would challenge the doctors who say that they can’t provide that to say, “I can’t do that, but here are the things I can do. I’m committed to relieving your suffering. I can do sedation if it comes to that. There are a lot of things I can do and still live within my moral situation, and that has worked for me and my patients pretty well.” If they can’t say that, what can they do? If a doctor is going to refer a patient to somebody else to do all of this because he or she can’t do any of it, it’s good to know that early on.

Dr Caplan: I want to thank you for sharing your insights with us. This has been an illuminating conversation. Thank you for taking the time to be here.

Dr Quill: It’s my pleasure. I enjoyed speaking with you.

Medscape Business of Medicine © 2016  WebMD, LLC

 

Dear Friends of End of Life Washington,

We join our friends and colleagues at Death with Dignity National Center in sharing some excellent news. We received the following message from DDNC’s Executive Director, Peg Sandeen yesterday:

Amid all the turmoil in Washington, D.C., right now, two more jurisdictions have joined the ranks of those close to offering the Death with Dignity option to their residents:

  • In an overwhelming vote last week, Colorado voters passed the End of Life Options Act by a 65 to 35 percent margin, by far the biggest margin of any state where the law has been approved. The law will likely go into effect in early 2017.
  • And today, the Council of the District of Columbia approved, on final passage, its own Death with Dignity law. The decisive 11 to 2 vote now sends the bill to Mayor Bowser.

We are cautiously optimistic the D.C. bill will become law: 67 percent of District residents support the legislation; the Council vote yielded a veto-proof majority; in part thanks to our prompting, dozens of D.C. residents have been calling the Mayor’s office to urge her to approve the bill; and the Colorado vote has reverberated across the nation, sending the message that Americans want this option.

We are hopeful that our nation’s capital will soon join the ranks of Oregon, Washington, California, Vermont, and Colorado as a jurisdiction where Death with Dignity is legal.

It is clear that 2016 has been one of remarkable success for Right to Die advocates everywhere. California’s law was implemented in June, and now the approval of laws in D.C. and Colorado will soon add millions more citizens who have the peace of mind knowing they will not have to suffer needlessly at the end of life.

As you know, End of Life Washington stands at the forefront of our state’s Death with Dignity Act, stewarding the law in large ways and small. We are grateful for our many supporters who make our work possible and insure the rights of all Washington State residents who seek a peaceful and dignified death.

Sally McLaughlin,

Executive Director, End of Life Washington

By Compassion & Choices, November 1, 2016

(Washington, D.C. – Nov. 1, 2016) Advocates for the D.C. Death with Dignity Actpraised the D.C. Council for approving the popular legislation today by a vote of 11-2, a veto proof margin. The bill will be placed on the agenda for a second and final vote at the next Council legislative meeting that takes place at least 14 days later (i.e., Nov. 15), according to the D.C. Legislative Process.

The legislation would give terminally ill adults with fewer than six months to live the end-of-life care option of obtaining a doctor’s prescription for medication they could decide to take to stop unbearable suffering by dying peacefully in their sleep.

“This bill allows someone who is on death’s doorstep the option to choose a peaceful death – to decide in one’s final moments, when the illness is terminal and death is imminent, how he or she will face the end,” said Councilmember Mary Cheh (D-Ward 3), the bill author. “It is a choice among many one could make, and, as Justice Sandra Day O’Connor noted, death will be different for each of us. But we should respect and honor this choice for those who want it. I know how wrenching and difficult this vote was and I am deeply grateful to my colleagues for supporting the bill.”

Two out of three (67%) of D.C. residents support the right of terminally ill adults with less than six months to live to legally obtain medication to shorten their dying process, according to a July 2015 Lake Research poll.

“As a woman with three cancer diagnoses, I would want medical aid in dying as an option for myself, if the times comes when my suffering becomes too much to bear,” said Dr. Omega Silva, who was the first woman president of the Howard University Medical Alumni Association and is a former president of the American Medical Women’s Association, which supports medical aid in dying. “As an internist and endocrinologist for 45 years, I know from experience that sometimes it is the only option to gently and quickly end a prolonged and agonizing dying process.’”

A growing number of national organizations representing healthcare professionals have endorsed or taken a neutral position on medical aid in dying as an end-of-life care option for mentally capable, terminally ill adults. In addition to the American Medical Women’s Association, they include the American Academy of Hospice & Palliative Medicine, American Academy of Legal Medicine, American Medical Student Association, and American Public Health Association.

Medical aid in dying is currently authorized in five states with a combined 30+ years of experience with this end of life care option: Oregon (since 1998), Washington (since 2009), Montana (since 2010), Vermont (since 2013) and California (since June 2016). There is not a single documented case of abuse or coercion involving the practice in these five states.

“I am grateful for the D.C. Council’s vote today because no one should have to die in agony like my husband Sean did,” said Michael Kaplan, who has lived with HIV since 1992 and Type 1 diabetes since 1980 and was the husband of the late TV reality star Sean Sasser, who was an HIV activist. “I plead with councilmembers to approve it again on final passage and for Mayor Bowser to promptly sign it into law.”

“I am thankful the D.C Council was able to see past opponents’ false claims that people with disabilities like me do not support this option,” said Compassion & Choices Political Director Charmaine Manansala, who has had multiple sclerosis for 15 years that significantly limits her mobility. “Polling shows people with disabilities want the same autonomy to make this end-of life care decision as any other demographic group.”

By Jenifer Brokaw and Robert Kane, September 29, 2016, Time

By the end of the first term of the next person elected President in 2016, there will be about 13 million more people over age 65 in the United States than when President Obama was last elected in 2012. In their lives, 70 percent of people over 65 will require long-term care—the range of services, both medical and social, that are designed to meet the personal care needs of the elderly or disabled but are not covered by traditional health insurance or Medicare (though it is covered by Medicaid for the poor or disabled).

We are two experienced physicians who were responsible for our loved ones in long-term care facilities. Both of our experiences left us deeply concerned about the ability of ordinary, non-medical people to receive quality, dignified care at the ends of their lives in these facilities.

Dr. Robert Kane:

You would have thought that I would be able to obtain the care I wanted for my mother—I’ve been studying long-term care for over 40 years, and I hold an endowed chair at the University of Minnesota on the topic. But I was not able to. In 2000, my mother had a stroke. I discovered that although she had one of the country’s best case managers (me) and a devoted caregiver (my sister), and even a reasonable amount of money, it was impossible to direct her care according to her wishes.

We were frustrated at every level. In the acute hospital setting, they put her in a noisy, brightly lit intensive care unit where she was over-stimulated and raving. Nurses gave her medications to sedate her that had the opposite effect and precipitated episodes of delirium. Even after we pointed out the perverse effect and got them to record that fact in the chart, the next shift did it again.

In assisted living, we observed that when her congestive heart failure got worse, my mother’s behavior deteriorated. When I proposed a simple system of weighing her each time and adjusting her diuretic medications on the basis of a simple calculation, I was told that was against the rules.

She fell often. Each fall led to the EMTs being called and her being taken to the emergency room, where she lay unattended on a gurney for hours. Each time, she became disoriented and delirious. We talked with the assisted-living staff to explain why these frequent trips to the ER did more harm than good. We even proposed signing a waiver of liability and having them call the EMTs only when there was evidence of serious injury, but they said that was beyond their capacity.

Finally, in a nursing home, they evaluated her frequent choking episodes and determined that she had a problem with aspirating food into her lungs. The treatment was puréed food and thickened liquids. This regimen ended one of the few pleasures she had left—eating food she enjoyed. Once again we offered to sign a waiver of liability, and once again we were told that it would not protect the staff from the regulators. She died several months later of the condition the thickened liquid was supposed to prevent: aspiration pneumonia. While we were relieved her suffering had ended, I had lingering feelings that I had let her down.
Dr. Jennifer Brokaw:

I took over Power of Attorney for my uncle, Bill Brokaw, who lived 2,000 miles away from me, when it was apparent that he was in the throes of dementia. He had no spouse or children of his own to take charge. As an emergency physician and professional patient advocate, I was surprisingly unprepared to anticipate the intricacies of managing his life with rapidly progressing Alzheimer’s. When I came into the situation and gained a small amount of his trust, I immediately asked him about his wishes regarding health care if he were unable to speak for himself. Although he was already in the moderately advanced stage of Alzheimer’s, he told me unequivocally that he did not want to live with dementia, and that he was not afraid to die. I pledged to myself that I would do everything in my power to make sure he had a dignified end and that nothing be done to prolong his life.

Unfortunately, Bill’s disease was always a step ahead. Independent living in the apartment became untenable when he stopped eating or bathing. “Aging in place” just wasn’t feasible.

Luckily, I found Mary, a geriatric care manager and an expert in this area. She had become a care manager because of her own experience advocating for her father-in-law. We undertook a painstaking look at every option, including Alzheimer’s only facilities, board-and-cares in private homes and the more luxurious assisted-living, memory-care facilities. Unfortunately, we were about to find out that signing a contract with a facility meant playing by their rules.

Although the manager of the facility went out of her way to accommodate our concerns and Bill’s dignity, she too quickly learned that his disease was progressing faster than we could anticipate. Behavior problems for him were persistent as he refused help with bathing and toileting. He sometimes struck staff who were attempting to help him. Soon, the private physician who covered the facility approached me about using a sedative medication. I knew that sedatives in Alzheimer’s patients was a no-no. It puts them at risk for falls, delirium and worse behavior. I was reluctant to consent, but I believed that not medicating Bill would put him at more risk as his agitation worsened.

Within days, Mary, who was there almost every day to check on him, noticed Bill was sleeping often and drooling. While he may have been a little more compliant with staff, his overall behavior hadn’t changed—he just became sleepy and unsteady on his feet. Furthermore, he was not able to participate in the one aspect of assisted living he really enjoyed: Day trips on the bus.

As the months passed, we experimented with several different medical regimens. Then I insisted that he be taken off all behavior-altering medicines. They just weren’t working. His mind became more addled in day-to-day tasks, and the intrusion of other impaired residents into his personal space led to more behavior outbursts and a physical confrontation with another resident.

In the final months of his life, we battled with the facility to keep him in the facility he had come to see as home. The administration threatened to transfer him to a place with more “safety measures” in place, but we knew that would mean physical and medical restraints. The thought of him being tied to a bed, and further sedated, enraged me. As a physician and a loving niece, I felt helpless.

Thankfully, the state Ombudsman for Long Term Care was brought in. She took our side wholeheartedly and asked the facility to look at their staffing and training more carefully. The company responded that he could stay if we hired a 24-hour-a-day private attendant. His monthly costs of care skyrocketed to $12,000.

Thankfully, his body shut down rapidly. He died on hospice care only a few months later. Ironically, the extra attention of hospice volunteers, including pet therapy and music therapy, produced a calm in him we hadn’t seen for two years.
If not even people like us—with all our resources and personal connections—could not get the acute medical and long-term care that honors the wishes of patients and families to have a gentle and dignified end, the system is broken. If the most skilled people in the country have serious problems getting high-quality, long-term care for their loved ones, what chance do lay-people have? We spend a great deal of time and effort looking for ways to pay for this care and to make it cheaper. We need to invest in making it better.

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