Ethicists debate ‘medical aid in dying’ for dementia patients

by Tanya Ott

Ethicists debate ‘medical aid in dying’ for dementia patients

Discussing end-of-life medical care can be really difficult for family, but especially so when the terminal condition is something like Alzheimer’s disease and you see the person you love disappearing before your eyes.

Is the person still truly alive? Do they wish they were dead?

It’s a situation my family is confronting. My father, Dan Ott, was diagnosed with Alzheimer’s in 2012, when he was in his mid-60s. What were once quirks became obsessions. He would hide my mother’s purse in the closet because he worried someone would see it through the living room window and break in to steal it. Eventually, he could not figure out how to use a telephone. It was a pretty quick decline, and I was losing the smart, funny guy I loved.

Two years ago, I took my recorder down to Florida hoping to talk to him about his life, before the man I knew slipped away for good. I prompted him with questions about growing up on a farm in Iowa, joining the Air Force during Vietnam, and his four-decade career as a university fundraiser. It did not go well. He was missing huge chunks of his own biography.

“I know some things happened,” he said. “I know they did.”

A few months after that conversation, we moved dad to a memory care unit and he’s still there today. He doesn’t even know that my mom died last fall. We didn’t tell him because we didn’t want him to grieve over and over. But her death has each of us in the family thinking about our end — and how we’d want to navigate it.

Mom had emphysema, and during her last hospitalization she needed a ventilator. Doctors said she’d likely never get off the breathing machine, so Mom, who was very lucid, chose to withdraw treatment. My brother, sisters and I were all with her when she took her last breath.

“I appreciate the fact that Mom chose and had that ability to choose,” says my sister Danielle Springston. “I don’t think Dad would have wanted things to be like they are now.”

“I think with Dad’s situation, it’s entirely different,” says my sister Krista Ott, who is also my father’s health-care surrogate. “He’s not competent to make those decisions, because sometimes he doesn’t even know his own name.”

In six states and Washington, D.C., a doctor can prescribe drugs that will help end a person’s life. Many call it physician-assisted suicide or death with dignity, but lots of people have problems with those terms, so experts have started using the phrase “medical aid in dying.” It’s not an option for people with Alzheimer’s.

To understand why, you have to understand how medical aid in dying works. First, you have to verbally tell a doctor you want it. That starts the clock ticking. Within 15 days, you have to find two doctors who agree you are terminally ill, will likely die within six months, and are competent. Then you have to submit a written request for life-ending medication that has to be witnessed by two people. The doctor holds onto the prescription for 48 hours before snail-mailing or hand-delivering it to a pharmacy.

“When we hand someone life-ending medication, the last official thing we say is, ‘Now, you do understand, Tanya, that when you drink this you will fall asleep, you will slip into a coma, and you will die,” says Sally McLaughlin, executive director of the advocacy group End of Life Washington. “And the problem is [with] a person with dementia, you can’t be sure they understand that.”

Gregory Pence, a bioethicist at the University of Alabama at Birmingham [UAB], says it’s complicated even if people clearly expressed their wishes back when they were competent.

“Let’s suppose I go a year into my diagnosis, and I’m in a locked unit somewhere. My family and the staff see someone who likes the Bee Gees, who likes Breyers ice cream, and the person I used to be hated the Bee Gees and didn’t really like ice cream,” says Pence. “But this looks like a pretty happy person. How could we possibly kill him?”

Even without medical aid in dying, some people with dementia find ways to end their lives on their own terms, says Wendy Walters, the clinical ethics consultant for UAB Hospital. Recently, she reviewed the case of a man diagnosed with early-onset Alzheimer’s. He had helped care for his mother-in-law, who also had the disease. It wasn’t the life the man wanted, so he shot himself and was left with massive injuries.

“It became a very large ethical dilemma for the trauma team,” says Walters, “because the family says he would never want to live like this.”

The family wanted to withdraw life support. Walters supported the plan.

“It was going to be multiple surgeries,” she says. “He would never be able to eat naturally again, and he would have to be tube fed for the rest of his life.”

In another case, Walters says, an elderly woman with Alzheimer’s was reliving the Holocaust, and every moment was terrifying to her. These kinds of cases are causing some ethicists and medical professionals to ask whether health-care systems should offer more options to people with the disease.

My sister and I don’t know whether Dad would have chosen medical aid in dying, but we all are confident he would have at least wanted the option.

“When we have pets and we treat them like our family and we love them and they live in the home with us, when that pet gets to the point where we know that they’re suffering, we are deemed cruel if we do not humanely euthanize them,” says my sister Krista. “And so often we don’t treat our senior citizens, our aging population, with the same respect. We hold on to them. We put them through more medical procedures. We put them in uncomfortable lifestyles that they would not choose for themselves.”

So, she says, in a lot of ways we seem to give animals a lot more respect, comfort and care than we do the people in our lives.

Click below for all the details about the Washington End of Life Coalition annual meeting on 11/16. We hope to see you there!

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by Bob Egelko, via SF Gate

A judge ordered a halt Tuesday to California’s right-to-die law for terminally ill patients, ruling that it was illegally taken up and passed during a special legislative session devoted to health care funding. Unless a higher court intervenes, the law, in effect since June 2016, will become unenforceable next week.

The law allows a dying adult patient to take lethal medication that a doctor has prescribed. Before that, two doctors must have determined that the patient would die within six months and was mentally competent to choose death.

State health officials reported that between June 2016 and the end of that year, 173 Californians were prescribed life-ending drugs by their doctors and 111 of them took the drugs. Similar laws are in effect in six other states and the District of Columbia.

A group of doctors represented by the Life Legal Defense Foundation challenged the California law, arguing that it lacked safeguards and could be exploited by greedy relatives. Riverside County Superior Court Judge Daniel Ottolia refused to block the measure from taking effect in 2016, citing its requirements for medical evaluation, but refused to dismiss the suit and expressed concern over how the law had been adopted.

On Tuesday, Ottolia agreed with opponents that the Legislature had lacked authority to consider and enact the bill during a special session that Gov. Jerry Brown called in 2015 to address emergency needs in the state’s health care system — specifically, funding shortages for Medi-Cal, disability care and in-home nursing care.

The judge had not yet issued a written ruling by deadline. But in comments during last year’s hearing quoted by opponents, Ottolia said the right-to-die law did not appear to be “related to improving the health of Californians,” Brown’s stated overall purpose for the session. Lawyers for both sides said Ottolia expressed similar views at Tuesday’s hearing.

Bills considered in a special session require the same majority vote as in normal legislative sessions, but are generally reviewed more quickly and take effect sooner than standard legislation. However, the right-to-die bill, which Brown signed in October 2015, was drafted to take effect in June 2016.

A special-session measure “does not receive the same degree of scrutiny and debate,” Stephen Larson, a lawyer for opponents of the law, said Tuesday.

He noted that state lawmakers had defeated four right-to-die measures during regular sessions after state voters rejected an assisted-dying law in 1992. Opposition to the law has been led by some religious groups and advocates for the disabled.

The legislation gained new support in California from the plight of Brittany Maynard, a 29-year-old schoolteacher from Alamo who was diagnosed with brain cancer in 2014. Facing a painful death, she moved to Oregon, where the nation’s first such law was passed two decades ago, and legally obtained a doctor’s prescription for the drug she used to end her life.

“I made a promise to my wife Brittany that I would continue her fight to authorize medical aid in dying,” her widower, Dan Diaz, said Tuesday in a statement released by Compassion & Choices, the nonprofit group that sponsored the California law. He said he would try to persuade Brown, the state attorney general’s office and the courts to keep the law in effect.

There was no immediate comment from California Attorney General Xavier Becerra’s office, which has defended the law in court. But Assemblywoman Susan Eggman, D-Stockton, the author of the state law, said she has learned that Becerra’s office, with Brown’s support, would ask the Fourth District Court of Appeal for a stay of the ruling and a prompt review of the law’s validity.

“If this isn’t Californians’ health care, I don’t know what is,” said Eggman, a former social worker at hospices, who disputes Ottolia’s conclusion that her bill should not have been considered during the special session. “The judge is not the governor,” she added, noting that Brown had decided the measure was related to health care when he signed it into law.

Asked for a comment, Brown’s office said Ottolia’s current assessment of the right-to-die law’s relationship to public health was different from his analysis in 2016, when he let the law remain in effect.

In his earlier ruling, Ottolia said: “Even though improving the health of Californians might seem far removed from assisted suicide, it is sufficiently related to health care and the efficiency and efficacy of the health care system for the court to consider the act to be within the scope of the authorization for the (special) session.”

Compassion & Choices also released a statement from Matt Fairchild, whom it described as a 48-year-old retired Army staff sergeant from Burbank who has been diagnosed with terminal melanoma that has spread to his bones, lungs and brain.

“I pray the attorney general successfully appeals this decision, so hundreds of terminally ill Californians like me don’t have to suffer needlessly at life’s end,” he said.

Larson, the lawyer for the Life Legal Defense Foundation, applauded “the courage demonstrated by the judge in finding the law unconstitutional.” If the ruling stands, he said, lawmakers could reconsider the issue at a regular session and set tougher standards for doctors to diagnose terminal illnesses and determine that a patient is mentally competent.

“We are hopeful that the state accepts this decision and that the matter is referred back to the Legislature for further consideration,” Larson said.

by Lindsey Bever

On his final day, before he went to a Swiss clinic to die, David Goodall spoke about his 104 years of life — and his scheduled death.

The Australian scientist, who had traveled to Switzerland to end his life because euthanasia isn’t legal in his homeland, answered questions about his well-publicized plans for an assisted suicide: Did he want to eat anything in particular for his last meal? He didn’t know. Did he want any special song played at his bedside? He wasn’t sure — but if he had to choose one, it would be the final movement of Beethoven’s 9th Symphony.

Then, the 104-year-old man burst spontaneously into song, singing in German:

Freude, schöner Götterfunken
Tochter aus Elysium,
Wir betreten feuertrunken,
Himmlische, dein Heiligtum!

In accordance with his plan, Goodall died Thursday at an assisted-suicide clinic, putting an end to a life that, he said, had become increasingly difficult to live.

Around midday, an IV was placed into Goodall’s arm, allowing him to turn a wheel to let the lethal drugs to flow into his bloodstream, according to Exit International, an Australian nonprofit that advocates for the legalization of euthanasia.

“David fell asleep within a few minutes,” Exit International said in a statement, which noted that he was accompanied by his grandchildren.

The “Ode to Joy” of Beethoven’s 9th Symphony began to play in German.

Then, just as the song concluded, Goodall died, said the nonprofit’s founder, Philip Nitschke.

“David Goodall is exactly the sort of member that Exit is made of and is proud of,” Nitschke said. “It was a wonderful experience to know him and be so intimately involved in his final weeks of life.”

The organization’s statement added that Goodall “has requested that his body be donated to medicine and, if not, that his ashes be sprinkled locally. He wishes to have no funeral, no remembrance service or ceremony. David has no belief in the afterlife.”

Goodall, a botanist and ecologist who was thought to be Australia’s oldest scientist, said on his 104th birthday last month he had simply lived too long.

“I greatly regret having reached that age; I would much prefer to be 20 or 30 years younger,” he told the Australian Broadcasting Corp. during the festivities in April. When asked whether he had a nice birthday, he replied: “No, I’m not happy. I want to die. … It’s not sad, particularly. What is sad is if one is prevented.”

“My feeling is that an old person like myself should have full citizenship rights, including the right of assisted suicide,” the 104-year-old man added.

Assisted suicide is banned in Australia, so Goodall boarded a plane last week and traveled more than 8,000 miles to Basel, a Swiss city near the French and German borders. Switzerland, like many other countries, has not passed legislation legalizing assisted suicide; but under some circumstances, its laws do not forbid it.

“I don’t want to go to Switzerland, though it’s a nice country,” Goodall told the Australian Broadcasting Corp. last week. “But I have to do that in order to get the opportunity of suicide which the Australian system does not permit.”

“I would prefer to be able to do it in this country,” he told 9 News Australia about leaving Australia. “This country is my home. I’m sorry to have to go a long way away in order to end my life.”

In most countries, euthanasia and physician-assisted suicide are illegal. However, a handful of nations — including Belgium, Luxembourg and the Netherlands — have legalized one or both of the practices, according to the nonprofit group ProCon.org. For years, Australia has banned such practices, but in November, the state of Victoria became the first to pass a euthanasia bill, which, by summer 2019, will allow terminally ill patients to end their lives.

Under Swiss law, a person with “commendable motives” may not cause another person’s death, and a person with “selfish motives” may not assist in the death; but the law does not forbid a person with “commendable motives” from assisting  someone in taking their own life.

The law states:

Any person who for commendable motives, and in particular out of compassion for the victim, causes the death of a person at that person’s own genuine and insistent request is liable to a custodial sentence not exceeding three years or to a monetary penalty.
Any person who for selfish motives incites or assists another to commit or attempt to commit suicide is, if that other person thereafter commits or attempts to commit suicide, liable to a custodial sentence not exceeding five years or to a monetary penalty.

In the United States, only six states — California, Colorado, Hawaii, Oregon, Vermont and Washington state — and Washington, D.C., have death-with-dignity laws for terminally ill patients.

Goodall said he did not have a terminal illness and until recent years, he appeared to be in good health. He played tennis until he was 90, he performed in amateur stage plays until his eyesight began to decline, and he kept up his work as an honorary research assistant at Edith Cowan University in Perth, even after the school in 2016 deemed him unfit to continue making the trek to campus, according to the Australian Broadcasting Corp.

The ABC reported at the time that after nearly two decades on the campus, Goodall was told to leave amid concerns about his well-being. The incident gained international media attention, with Goodall, then 102, calling it ageism in the workplace.

“It’s depressed me; it shows the effect of age. The question would not have arisen if I were not an old man,” he said.

University officials later reversed their decision.

Goodall said he had a good life, but in recent years, his health had declined.

He told the ABC that several months ago, he fell down in his apartment in Perth and, for two days, he lay on the floor until his housekeeper found him.

“I called out, but no one could hear me,” he said.

Goodall said he thought it was time for him to die. But his country’s new legislation was of no use to him because it applies only to those who are terminally ill.

Before leaving for Switzerland, he told 9 News Australia family members, including his daughter and three grandsons, were accompanying him on the trip. “It’s very good that they shall be here to see me off. I have a lot of family elsewhere, some in Europe, whom I shall see in Bordeaux. In Switzerland, I will also see one or two other members of my family, and so that will also be a goodbye.”

For his final news conference Wednesday in Basel, Goodall wore a shirt that said “Ageing Disgracefully.”

He said there were things he would miss, such as his “journeys into the Australian countryside.”

“There are many things I would like to do, I suppose, but it’s too late,” he told reporters. “I am content to leave them undone.”

He stressed that it was his “own choice to end my life” and said: “I look forward to that.”

Goodall said he hoped his story would encourage lawmakers to consider legislation to allow others like him to make their own decisions about death.

In the end, Goodall said, he would like to be remembered “as an instrument of freeing the elderly” to choose their own death.

“At my age, and even rather less than my age, one wants to be free to choose the death and when the death is the appropriate time,” he said.

We are so very grateful to Elaine Fong and her family for their support of End of Life Washington and were privileged, in turn, to support their mother to access Death with Dignity. Please note that the medical protocol she mentions has been amended so that a burning sensation is no longer an issue. Also, while the second extremely expensive option remains egregiously over-priced, it is not “a pill” but rather 100 small capsules that are opened, emptied and mixed with liquid by an End of Life Volunteer.

by Sara Schilling, Tri-City Herald

Phillip Estes lived a long, fulfilling life.

A Harvard-trained physicist, his work took him around the country — ultimately to the Tri-Cities and the Hanford nuclear reservation.

He and his wife, Judith, were happily married for 54 years. They had two loving kids. They had so many wonderful times.

When Phil was diagnosed with cancer, he fought. He had part of his liver removed and endured other difficult treatment.

But, eventually, the cancer exploded throughout his body. He was in pain, with no hope of recovery. He wanted to die on his own terms.

However, accessing Washington’s Death with Dignity law — which provides a path for terminally ill people to end their lives — proved to be a significant challenge.

The option isn’t common or well-understood in this part of the state.

Phil’s daughter, Linda Estes, is determined to change that.

She’s on a mission to improve access and raise awareness — inspired by her father, who used the law to end his life in January 2016.

Death with Dignity isn’t the right choice for every person or family, Linda said.

But when it is, it should be far easier than it was for her family, she said.

Death with Dignity

Washington’s Death with Dignity Act took effect in 2009.

It allows terminally ill adults, who have less than six months to live, to request a lethal dose of medication to end their lives.

A doctor prescribes the medication, but doesn’t administer it. Patients must be able to take it on their own.

Calling the act “suicide” is wrong, saidSally McLaughlin, executive director of End of Life Washington, a resource and advocacy group.

“Suicide connotes a premature death that doesn’t need to happen — it’s the premature ending of a life,” she said. “The people who use Death with Dignity would live on if they could. They are already dying. They are simply choosing the manner and the hour of their death.”

More than 1,300 people have died after requesting lethal medication under Death with Dignity since 2009, according to the Department of Health.

Most of them have been from Western Washington — at least 90 percent each each year.

Experts point to lack of awareness and access as factors in the disparity between the west side and east side figures.

If patients and families don’t know it’s an option or how to access it, if health care facilities don’t participate or provide information, and if other resources are few and far between, it can be challenging to virtually impossible.

“The farther you go from Seattle, the more trouble you’ll have accessing Death with Dignity,” McLaughlin said.

‘It was in his control’

For the Estes family, the process was far from smooth.

Phil’s doctor at Kadlec Regional Medical Center in Richland agreed to give approval as the attending physician and write the prescription.

But then he discovered that doing so would break Kadlec’s policy, so the family was back at square one — making a flurry of calls to find help.

The family didn’t just need to find one doctor, but two.

Under the law, two physicians must sign off — the second to backstop the first, making sure the patient is competent and meets all other requirements.

“We’ve got two cell phones, three extension phones. Mom is carrying them around in a paper bag so whatever phone someone calls back on, we’ll get the call,” Linda said. “We called everyone we could think of.”

Finding a local pharmacy to fill a prescription — if they could even get one — also proved tough.

It was exhausting and frustrating, Linda said. “When you are in the middle of all that grief, you have about three brain cells to rub together” and the extra hurdles made it even harder, she said.

The Estes family could not find a local doctor to sign off as the attending physician. End of Life Washington eventually helped connect them family with a doctor in Spokane.

The doctor wanted to see Phil face to face, not by telemedicine, so the family had to figure out how to get the ailing 81-year-old, who struggled to sit up even for short periods, to the appointment.

They settled on a cabulance, to the tune of $1,400.

They also found a second doctor, and a Spokane pharmacy filled the prescription.

When it was finally settled, Phil was relieved, his daughter said.

“I put the little bag in Dad’s hand, and he was like, ‘Ahh,’” she recalled. “It was in his control.”

Advocacy work

As part of her advocacy work, Linda reached out to Providence St. Joseph Health — Kadlec is part of the Providence network — in hopes of updating Kadlec’s policy.

She researched, sent off emails, even traveled to the Renton headquarters for an in-person meeting.

Kadlec’s position isn’t changing — it doesn’t allow doctors to participate or fill prescriptions — but there is now talk of adding specifics about where staff can direct patients who want more information.

The Tri-Cities’ other hospitals have varied stances on Death with Dignity.

Lourdes Health in Pasco doesn’t allow its doctors to participate.

Trios Health in Kennewick, on the other hand, does allow physicians to participate if they choose.

Trios is the area’s only public hospital system. Lourdes is a private Catholic institution. Kadlec is nonreligious, although Providence is a Catholic health network.

Linda plans to speak about Death with Dignity to several local groups in the coming months, from Rotary to the Benton Franklin County Medical Society.

She also plans a series of public seminars, starting with a session on “End of Life Choices” on April 26 in Pasco.

It’ll touch on Death with Dignity, but also other issues surrounding the end of life.

In July, a session on advanced planning is scheduled. And in September, Linda will hold a session for people interested in becoming volunteers.

A variety of volunteer options are available, from helping publicize events, to picking up prescriptions, to working with families directly and even being present at deaths.

During the session, “we’ll talk about what (prospective volunteers) want to do,” Linda said.

‘Force of nature’

McLaughlin said Linda Estes is a “force of nature” who’s doing important work.

“She speaks from deep experience and is very committed. She’s working hard to see that the Tri-City area has reliable, robust access to Death with Dignity for those who want it,” she said.

The people who want it tend to have some things in common.

Along with being from the west side, they’re most often white and have at least some college education.

They also range in age; in 2017, the span was 33 to 98 years old.

In most cases, they have cancer, although neurodegenerative diseases such as ALS also make the list, along with other illnesses.

In about one-third of cases, people who obtain the medication don’t end up using it, McLaughlin said.

Some become too sick to take it on their own, as required. Others decide they ultimately don’t want to.

In some cases, “simply knowing that they have a choice at a time in life when their choices have been drastically limited is palliative in nature,” McLaughlin said. “People are relieved to have a choice.”

Peaceful and calm

Phil Estes was a practical man, his daughter said

When treatment was still an option, he pursued it. But when his condition worsened and “the only option left was suffering, it didn’t make sense to him,” Linda said.

He said his goodbyes to friends and loved ones. On Jan. 4, 2016, he was ready.

Linda prepared the medication, with her longtime love, Paul, on hand for support.

Phil started the process of taking it. “He asked for music, and we put ‘The Lion King’ on,” Linda said. “I held one hand and Paul held the other and we just talked.”

By then, they’d said all the big things. They were close. Phil was a kind, wonderful father, Linda said.

“He was not ashamed to tell me that he loved me and he was proud of me. If I asked for advice, he would give it. And he would take advice from me,” she said.

They had a loving relationship.

Eventually, he laid back and closed his eyes. He said he was getting sleepy. Before too long, he was gone.

Linda had been scared of death, but watching her father’s passing changed that. “It was very peaceful, very calm,” she said.

It was what he wanted. And in the difficulty and challenge, Linda found a mission.

“It’s every family’s choice to decide what to do. Whatever you choose should be easy. It’s legal. It should be easy,” she said. “It should be fair and equitable for everyone in the state.”

The April 26 seminar is at 5:30 p.m. at the Mid-Columbia Libraries branch in Pasco.

To learn more about it or future sessions, or to inquire about volunteering, email endoflifetricities@gmail.com.

by JoNel Aleccia, for NPR Health Shots

Treading into ethically and legally uncertain territory, a New York end-of-life agency has approved a new document that lets people stipulate in advance that they don’t want food or water if they develop severe dementia.

The directive, finalized this month by the board for End Of Life Choices New York, aims to provide patients a way to hasten death in late-stage dementia, if they choose.

Dementia is a terminal illness, but even in the seven U.S. jurisdictions that allow medical aid-in-dying, it’s not a condition covered by the laws. Increasingly, patients are seeking other options, says Dr. Timothy Quill, a palliative care specialist at the University of Rochester School of Medicine and longtime advocate of medical aid-in-dying.

“Developing incapacitating dementia is certainly my and a lot of people’s worst nightmare,” he says. “This is an aggressive document. It’s a way of addressing a real problem — the prospect of advanced dementia.”

The document offers two options. One option is a request for “comfort feeding” — providing oral food and water if a patient appears to enjoy or allows it during the final stages of the disease. Another alternative would halt all assisted eating and drinking, even if a patient seems willing to accept it.

Supporters say it’s the strongest effort to date to allow people who want to avoid the ravages of advanced dementia to make their final wishes known — while they still have the ability to do so.

“They do not want their dying prolonged,” says Judith Schwarz, who drafted the document as clinical director for the advocacy group. “This is an informed and thoughtful choice that needs a great deal of reflection and discussion.”

But critics say it’s a disturbing effort to allow withdrawal of basic sustenance from the most vulnerable in society.

“I think oral feeding is basic care,” says Richard Doerflinger, an associate scholar with the Charlotte Lozier Institute, which opposes abortion and euthanasia. “It’s what they want here and now that matters. If they start taking food, you give them food.”

Advance directives are legally recognized documents that specify care if a person is incapacitated. They can confirm that a patient doesn’t want to be resuscitated or kept on mechanical life support, such as a ventilator or feeding tube, if they have a terminal condition from which they’re not likely to recover.

However, the documents typically say nothing about withdrawing hand-feeding of food or fluids.

The New York directive, in contrast, offers option A, which allows refusal of all oral assisted-feeding. Option B permits comfort-focused feeding.

The options would be invoked only when a patient is diagnosed with moderate or severe dementia, defined as Stages 6 or 7 of a widely used test known as the Functional Assessment Staging Tool (FAST). At those stages, patients would be unable to feed themselves or make health care decisions.

The new form goes further than a similar dementia directive introduced last year by another group that supports aid-in-dying, End of Life Washington. That document says that a person with dementia who accepts food or drink should receive oral nourishment until he or she is unwilling or unable to do so.

The New York document says, “My instructions are that I do NOT want to be fed by hand, even if I appear to cooperate in being fed by opening my mouth.”

Whether the new directive will be honored in New York — or anywhere else — is unclear. Legal scholars and ethicists say directives to withdraw oral assisted-feeding are prohibited in several states.

Many care facilities are unlikely to cooperate, says Thaddeus Pope, director of the Health Law Institute at Hamline University in St. Paul, Minn., and an expert on end-of-life law. Doctors have a duty to honor patient wishes, but they can refuse if they have medical or moral qualms.

“Even solidly legal advance directives do not and cannot ensure that wishes are respected,” Pope writes in an email. “They can only ‘help assure’ that.”

Directors at End of Life Choices New York consider the document “legally sturdy,” Schwarz writes, adding: “Of course it’s going to end up in court.”

Whether assisted feeding can be withdrawn was at the center of recent high-profile cases in which patients with dementia were spoon-fed against their documented wishes because they continued to open their mouths. In a case in Canada, a court ruled that such feeding is basic care that can’t be withdrawn.

People who fill out the directives may be more likely to have them honored if they remain at home, Schwarz says. She stresses that patients should make their wishes known far in advance and choose health care agents who will be strong advocates. Attorneys say the documents should be updated regularly.

Doerflinger, however, says creating the directive and making it available misses a crucial point: People who don’t have dementia now can’t know how they’ll feel later — yet, they’re deciding in advance to forgo nourishment.

“The question is: Do we, the able-bodied, have a right to discriminate against the disabled people we will later become?” Doerflinger says.

Already, though, Schwarz has heard from people determined to put the new directive in place.

Janet Dwyer, 59, of New York, says her family was horrified by her father’s lingering death after a heart attack four years ago; Her family has a strong history of dementia, so when Dwyer learned there was a directive to address terminal illness and dementia, she signed it. So did her husband, John Harney, who is also 59.

“Judith informed me of the Option A or Option B scenarios,” says Dwyer, who opted for the more aggressive option — refusal of all oral assisted-feeding. “I said, ‘Well, that is just perfect.”

Kaiser Health News (KHN) is a nonprofit news service covering health issues. It is an editorially independent program of the Kaiser Family Foundation that is not affiliated with Kaiser Permanente.

by Samantha Wohlfeil, the Inlander

On a cold winter morning, Phil Estes gets into the private ambulance he’s hailed for the more than two-hour journey to Spokane, all 99 pounds of the former Hanford engineer clinging to his frail 6-foot-tall frame as his gurney is secured in the vehicle.

He’s taking this trip not to save his life, but to be able to end it. As weak as Estes is, this is his last resort.

The 81-year-old is several years into his fight against colon cancer. He can barely sit up for five minutes at a time, let alone take care of himself. He’s in pain, it’s hard to breathe and the cancer that has riddled his body is going to kill him. So he’s done.

He wants to take “the pill.”

“I’ve lived a long life, a happy life,” Linda Estes recalls her dad telling her family at the time. “I want you to go on with your life, but I’ve thought it all through, and this is the best option.”

But as his family would soon learn, getting a lethal dose of medication, which is legal under Washington’s Death with Dignity Act, involves much more than a single pill. And in Eastern Washington, it can mean long roadtrips to find doctors and pharmacies willing to validate a patient’s terminal illness and fill a fatal prescription.

In the 10 years since voters passed the Death with Dignity Act, the vast majority of terminal patients who have opted to die under the law lived in Western Washington — more than 90 percent of cases most years — despite Eastern Washington accounting for more than 20 percent of the state population.

The discrepancy between the two sides of the Cascades, experts say, is largely due to access: Even those who can cover thousands of dollars in out-of-pocket costs aren’t guaranteed to live in an area where a doctor or hospital system is willing to participate.

In Estes’ case, Dr. David Jones had been working with him for years and was willing to learn how to sign off as the attending physician and write him a prescription. That meant Estes just needed another consulting doctor to agree he was mentally competent, deathly ill and not being coerced to get the life-ending medication.

But Jones learned that participating would violate policy at Kadlec, the Tri-Cities hospital system where he works, and he feared he might lose his job. The previously secular system had recently been acquired by Providence, a Catholic health-care system that generally doesn’t allow its employees to participate under the rules of the act.

So the family scrambled to find other doctors.

“We called everybody we could think of,” Linda Estes recalls. “At one point my mother was carrying all the cellphones and the house extension in a bag with her, so whoever called, she could answer them.”

Eventually, with assistance from End of Life Washington, a Seattle-based organization that helps people navigate end-of-life options, they got in touch with a Spokane doctor willing to sign the attending paperwork, and a local physician agreed to handle the consulting role. But the Spokane doctor wanted to diagnose Estes in person, spurring the $1,400 contracted ambulance ride from Richland to Spokane.

After an exhausting day of appointments, Estes got his prescription.

“I got out to the ‘cabulance,’ and I put the bag in dad’s hands,” Linda Estes says. “He grabbed that little [prescription] bag and his whole body relaxed. He’d been so afraid that at the last minute, that this decision that was his to make would be snatched from him.”

Estes took the medication at home Jan. 4, 2016, fell asleep and died peacefully with his daughter holding his hand.

But Linda Estes questions why it was so difficult to access something that was legal, especially when her father’s doctor was OK with the decision.

“My mom and I were able to accomplish this because we had the financial means and educational resources,” she says. “What do people do who don’t have these kind of resources? It shouldn’t be this hard.”

So she’s joining efforts to make the process easier for others and ensure physicians who want to sign off can do so.

TERMINAL CHOICES

Washington’s role in nationwide right-to-die efforts has a complicated history. In 1997, the U.S. Supreme Court reviewed a Washington state law that made physician-assisted suicide a felony. The court held that the law was fine, but also left the door open for states to pass laws allowing the practice if it wouldn’t violate their own constitutions.

That same year, Oregon became the first in the nation to enact its Death with Dignity Act.

A decade later, nearly 58 percent of Washington state voters approved their own version of the act, making Washington the second state in the country to allow the practice. Assisted suicide is still illegal under state law, but under the Death with Dignity Act, people who are already dying and meet the qualifications are not considered to be committing suicide — their underlying illnesses are listed as the cause of death on death certificates.

Since then, three other states — Vermont (in 2013), Colorado (2016) and California (2016) — and the District of Columbia (2017) have also legalized it. Opponents have filed various challenges in court, but each of the laws have been allowed to move forward. Montana hasn’t passed a similar law, but the state’s Supreme Court determined in a 2009 case that nothing in Montana law prohibits physicians from participating. That means about a sixth of the U.S. population lives in a state where the process is legal, and several states are currently considering similar bills.

The majority of American adults believe that someone has a moral right to end their life if they are suffering great pain with no chance for improvement (62 percent), or have an incurable disease (56 percent), according to a 2013 Pew Research survey on end of life. However, only 47 percent approved of laws allowing doctors to prescribe lethal medication to terminal patients.

How that process is referenced largely depends on viewpoint: Opponents typically refer to it as “physician-assisted suicide” or “euthanasia” (mercy killing), while proponents tend to use “death with dignity” or “physician aid-in-dying.”

Many opponents, including large sectors of the medical field and religious organizations, consider the act a crime or immoral. Some worry there could be a slippery slope: If patients think they are a burden on their families, they may feel pressured to die sooner; or insurance companies could decide it is cheaper to pay for fatal medication than further treatment. In summer 2016, Pope Francis told medical leaders that physician-assisted suicide was “false compassion.”

“Frailty, pain and infirmity are a difficult trial for everyone, including medical staff. They call for patience, for ‘suffering-with.’ Therefore, we must not give in to the functionalist temptation to apply rapid and drastic solutions, moved by false compassion or by mere criteria of efficiency or cost effectiveness,” the Catholic News Agency reported Francis saying. “The dignity of human life is at stake.”

But proponents point to very specific protections written into the law. More than one physician needs to determine someone is terminally ill and not being coerced. At least one witness to the request for medication must not be related or stand to gain financially from the person’s death. There are mandatory waiting periods and the chance to rescind a request before a prescription is filled.

In states where it is not legal, people sometimes take extreme measures to die on their own terms.

Lacie Agidius was drinking coffee with her father in Lewiston, Idaho, when he received the worst call of his life.

Her grandfather was on the other end. He’d dressed in his best Sunday suit, organized important documents and was calling to make sure someone knew where a few things were on the family farm before taking his own life.

“He had told [my dad], ‘I want you to know, I don’t want to freak you out: Today is the day. I’m getting ready to walk down to the car,'” Agidius says. “He said, ‘This is not a call for help. This is absolutely what I want to do.'”

After being diagnosed with prostate cancer, her grandfather chose not to treat it. For months, he’d told his family he was getting his affairs in order and planned to take things into his own hands if it came to the point where he was in too much pain and couldn’t care for himself, but they’d largely brushed him off or were in denial, Agidius says.

Then came the call. In an awful shock to Agidius’ father, not only did her grandfather warn him not to call authorities, but he also said if he wasn’t successful, he wanted them to “finish the job.” A half-hour drive away, her father refused and said, “You don’t need to do this.”

“The whole conversation was awful,” Agidius says. “That long car ride for my dad and brothers, not knowing what they were going to find, that whole experience was so traumatic.”

By the time they arrived, it was too late.

Agidius, who now works in hospice care in the Spokane-Coeur d’Alene area, says she wishes that life-ending meds would have been an option for her grandfather, as it would’ve made things easier on everyone to know what was coming, and would have been less frightening for him, as it would have provided certainty.

She still lives in Idaho, where lawmakers made physician-assisted suicide a felony in 2011, partly in response to efforts similar to those that legalized the practice in neighboring states.

“It is something that is hard for people on the Idaho side to think we wouldn’t have that option,” she says. “You plan that date, then you can have time with that person, you know it’s happening. You can say those things you want to say and not have a shocking situation.”

PLANNING FOR THE UNKNOWN

Aside from the planning required by mandatory waiting periods, people with life-ending meds tend to plan out the process with family, and in each of the cases volunteer client adviser Jessica Rivers has worked on, they tried to say meaningful goodbyes to their loved ones.

Rivers, who lives near Palouse, Washington, has been a volunteer with End of Life Washington for about four years, working with families in Pullman, Spokane and rural communities in the region.

In the first case she worked, she and other End of Life volunteers arrived on the date their client selected to find his home full with family, friends and neighbors.

“They had food and drink and had all been having his celebration of life that morning,” Rivers says. “It was really remarkable, because we just let them take their time and do what they needed to do.”

The man, dying of aggressive cancer, gave his own eulogy, and everyone surrounded him as he lay down in bed, took the medication and talked them through how he felt before falling asleep. In the quiet, someone started singing “Amazing Grace,” and everyone cried.

“It was very powerful for me, and it was very gentle and very peaceful for him,” Rivers says.

For her, the choice to get involved in end-of-life care started about 20 years ago, when she cared for her mother, who was dying of pancreatic cancer.

“I remember my mom looking at herself in the mirror one morning, and the cancer had just ravaged her body,” Rivers says. “She was actually, amazingly enough, OK with dying, but she wasn’t OK with the process of getting there, and I think that’s true for most of the folks I’ve been with at End of Life.”

Of the 25 cases she’s been involved with through the organization, each patient died, though only six of them decided to take the medication.

“The majority of them told me, ‘I may or may not use this, but it gives me peace of mind,'” Rivers says. “And one of the things I tell them on that first visit when I meet them is ‘I’m not invested at all in whether they take this or not.'”

As a volunteer, she typically meets with families a few times, offering information on what the process may look like, encouraging clients to get on hospice care, and talking about death and the dying process, which is new to many people.

“I think that helps reduce fear,” she says. “My little piece of advice to family members is try not to let the fear and grief interfere in the days to come that you have left with your loved one. Try to really balance that fear and grief with love and gratitude.”

Rivers, who spent several years working in hospice, feels people aren’t supported enough through the end of their lives, which can be distressing. One dying man Rivers spoke to last year blurted out in front of his adult children that if he couldn’t for some reason access lethal medication under Washington’s law, he had hunting guns in his basement.

“The fear and distress this caused his children was so obvious and apparent,” Rivers says. “But the reality is people who are desperate can do dramatic things, and that’s one of the reasons this law is so important. People should not have to feel desperate.”

EAST SIDE, WEST SIDE

Of the more than 1,100 people who are known to have died after getting prescriptions for lethal medication under Washington’s law from 2009 through 2016, fewer than 150 lived east of the Cascades, according to data compiled by the Washington State Department of Health. Not all of those people took the medication.

About three-quarters of people who got prescriptions had cancer, while the rest were mostly people with neurodegenerative diseases such as Lou Gehrig’s disease or respiratory or heart disease.

People who use the law account for only about two of every 1,000 deaths in Washington, says Sally McLaughlin, executive director of End of Life Washington. Of the more than 54,000 people who died in the state in 2015, 166 used the medication, putting the number of deaths in that category slightly above the 141 people who died from the flu the same year.

“It’s not like it’s a rampant number of people, but the issues with access have to do with several things,” she says. “One is access to physicians who can or are able to prescribe life-ending medications in a more conservative environment. There are a lot of physicians who don’t even want to think about administering life-ending medications.”

Secondly, many doctors are not allowed to participate under the rules of their employers. Patients often have to form new relationships with doctors when they’ve got little time left.

Aside from the population size accounting for part of the difference, many people east of the mountains just don’t know the law exists, says Dr. Raleigh Bowden, who lives in Twisp and works as a volunteer medical adviser with End of Life.

“In my personal experience, a lot of people don’t know about the law,” Bowden says. “In fact I talked to one pharmacist [last] year who didn’t know we had a law.”

Patients need both a prescribing doctor and a consulting physician, who ensures the person isn’t being coerced. To be eligible, the patient must be a Washington resident, have about six months or less to live, and understand that there are other options, Bowden says.

Ideally consulting physicians see someone in person, but in rural areas, sometimes they have to use other options like electronic communication. From Twisp, Bowden will sometimes serve in the consulting role via Skype, as that part of the process mostly involves going over a checklist with the patient.

Attending doctors almost always want to see the patient in person, Bowden says, and it’s better if they’ve already had a relationship. Jones, Estes’ doctor, says it was the fact he’d known him for eight years that made him comfortable with the idea of supporting his decision.

“It was the perfect situation for me to say, ‘Wow, how could I deny this?'” Jones says. “Whatever my beliefs were, I was a physician in the state of Washington where this was legal. It took the politics out of it for me until the very end when I realized I might be at risk of losing my job.”

Aside from physicians, the medication itself can pose problems.

End of Life Washington recommends one of two prescriptions. The first and cheapest runs about $700, but needs to be made in a compounding pharmacy, which often isn’t available in rural areas, Bowden says.

The second and most expensive option involves opening up about 100 capsules of Seconal, once regularly prescribed as a sleeping pill, and mixing the contents with juice or something the patient can drink. With only one manufacturer making the drug anymore, the price for that dosage has gone up from a few hundred dollars when Washington’s law started to more than $3,000.

“If you’re poor — and I have yet to see an insurance company pay for this, though I hear some will — then the cost falls into the lap of the patient or their family,” Bowden says. “That’s a barrier if you come from a poor part of the state.”

The most common reasons Washington patients told their doctors they wanted life-ending meds was because they were losing autonomy and the ability to engage in activities that make life enjoyable, with 84 percent to 100 percent of patients citing those two reasons every year from 2009 to 2016, the most recent for which state data has been released.

In contrast, inadequate pain control or concern about it was cited by 25 percent to 41 percent of patients, and only 2 percent to 13 percent cited concerns about the cost of medical treatment.

For many years, Pat and Melinda Hannigan lived in Seattle, where Melinda was an artist and Pat worked as a tanker pilot in Puget Sound. Melinda was hanging some of her paintings for a show in Tacoma when she had a shooting pain go through her head and half of her face became paralyzed. What they initially thought was a stroke was actually due to a tumor, part of an aggressive cancer that would spread to other parts of her body.

Hannigan tried every treatment available, but after years of radiation, chemotherapy and other therapies destroying her body, her quality of life was awful, Pat Hannigan says.

She could barely swallow or speak, was put on a feeding tube for more than a year and was confined to a wheelchair. After going on hospice care in the home the couple had built in Twisp, she decided to take the medication.

When it came time, Pat had to drive an hour to Omak to get the pills, which cost them about $4,400 out of pocket.

Hannigan shared a final dinner with her kids and grandkids and was surrounded by family when she took the lethal dose in July of 2016.

Pat Hannigan says it was the right decision for his wife and was in keeping with her choices to accept or decline treatment at every step of her illness. Still, he hasn’t spoken to many people about the experience, in part because he doesn’t want to influence others, who need to make that choice for themselves. However, he thinks those who oppose the law don’t understand what it’s like.

“I hear people criticize it and I think to myself, ‘They have never been through an experience like this in their lives,'” Hannigan says. “It’s really easy for them talk based on their religious beliefs or their philosophical principles, but if you live through four years of absolute, total hell, with no hope, Death with Dignity is an awesome thing.”

NOT FOR EVERYONE

Policies about physician participation under the act vary even within the same system.

For example, Providence physicians in Spokane are not allowed to participate under the rules of the act in any way, even though physicians at Swedish, a Providence-affiliated hospital in Seattle, are allowed to if they choose.

“We respect the rights of patients and their care team to discuss and explore all treatment options and believe those conversations are important and confidential. As part of a discussion, requests for self-administered life-ending medication may occur, but our providers do not participate in any way in assisted suicide,” writes Liz DeRuyter, director of external communications for Providence Health & Services. “We provide all other requested end-of-life and palliative care and other services to patients and families.”

MultiCare, the other large service provider in Spokane, does allow its physicians to participate as attending and consulting physicians, and they may write prescriptions. However, no MultiCare physicians or pharmacies can help patients fill the prescriptions, meaning they need to find another pharmacy to fill it.

In her efforts to increase access, Linda Estes is working with Providence to change the policy at its Tri-Cities affiliate hospital to allow physicians to participate under the law, even if that means doing so outside of the scope of the hospital system. She’s been in contact with a Providence attorney about helping draft that policy, which is under consideration.

Estes says she’s passionate about making that change because when a family member is dying, the last thing people need is additional stress around end-of-life decisions.

“When you’re grieving so hard, you don’t have brain cells left to deal with this,” Estes says. “Having been through it myself, and having been put completely through the ringer, I want to make sure this is an easier process to do. Not to say it’s the right choice for everyone, it’s just our choice.”

Samantha Wohlfeil covers social services, the environment, tribes and other issues for the Inlander. Before joining the paper in February 2017, she worked as a political reporter at the Bellingham Herald in northwest Washington.

From Death With Dignity, deathwithdignity.org:

As our partner organization, End of Life Washington gears up to celebrate the 10th anniversary of the Washington Death with Dignity Act next November, EOLWA Executive Director Sally McLaughlin is preparing for the next 10 years. We spoke with her earlier this month about the organization’s recent accomplishments, long-term goals, and strategies to confront challenging issues in the year ahead.

What was one of EOLWA’s most significant accomplishments in 2017?

The thing that has of late gotten us the most attention and press is our organization’s latest end-of-life planning document: the recently published instructions for oral eating and drinking. We worked hard to develop a document which allows a person to articulate her wishes about when to be offered food and fluids during late-stage dementia. We are pleased to offer this resource to all Washingtonians.

How do you measure EOLWA’s success?

We monitor how many Washingtonians die from ingesting medication prescribed to them by their doctors under the Washington Death with Dignity Act; then, we look to see how many were clients of ours. In 2014, there were 127 deaths; 124 of those were clients of ours. In 2015, there were 219 deaths, and 202 of those were our clients. We are seeing a subtle growth in people who are able to access and complete the Death with Dignity process on their own, without our assistance. From our perspective, that is a very positive development.

In the final analysis, we do not want to be a self-perpetuating organization. Our goal is to do our job right and so well that eventually we won’t need to exist. We want to see other organizations, especially hospices, take care of their own clients so that we don’t have to swoop in at the last minute. Now we are seeing other institutions taking care of their own patients who have chosen to end their lives using the Act. We are pleased to see the role we have played in helping organizations get to that point.

What are some examples?

We are supporting a designated social worker at the University of Washington Medical Center. She is doing such a phenomenal job that she doesn’t need us anymore, which of course is part of our goal. Making sure UW Medical Center has its systems and personnel in place helps them to better steward their death with dignity patients, leaving EOLWA in an advisory role.

We continue to work with Washington State hospices as well as facilities such as Seattle Cancer Care Alliance to support them as they develop robust protocols to respond to patient requests for death with dignity. We’re still the clearinghouse for information about end-of-life options and referrals, but we are seeing slow but measurable progress among healthcare organizations in our state.

It can be a challenge to provide services to patients in rural areas. How is EOLWA working to serve people outside of Washington’s population centers?

It’s a real challenge for us because of our desire to provide rigorous training and mentorship to people who work under the EOLWA name. Our normal process when you become a volunteer client advisor entails an in-person interview followed by an online information training, including quizzes which highlight understanding. You must attend a 3-day in-person training and attend monthly meetings, and you work with a mentor for a minimum of one year. When people live in rural areas, it’s a little harder to participate in our program. How do we mentor you long-distance? We’re working on building teams in less populous parts of the state. Given that there’s less demand for Death with Dignity in more politically conservative rural areas, we could do what we need to do with a small team. We are slowly but surely building that infrastructure.

What are you most excited about for 2018?

I am excited to continue the growth that we’ve implemented with regards to our volunteers and their choices for involvement. I am most excited to see us get a better foothold in other areas of Washington state. I have begun setting up meetings with providers and potential volunteers in new areas. We continue to canvass senior centers, distributing our brochure and connecting with staff and residents.

Through our workshops and seminars, we address not only how qualified individuals can access the law; we also provide education about all end-of-life choices. Part of that education includes ensuring that every Washingtonian over 18 is aware of how to create a viable advance directive and how to access the law.

I want every Washington resident to know that she has the right to explore death with dignity or physician aid in dying. I take it personally when I hear someone from out of state say, ”If I come down with [a terminal illness,] I’m moving to Oregon to use the death with dignity law.” People need to know that Washington is one of the states that has this option, and that we can provide support and guidance to help them get their needs met.

On a personal note, I feel so fortunate to be able to work with an organization and for a cause that is so inherently meaningful. I came to the Death with Dignity movement after 42 years in the world of education. This work is just as meaningful, if not more so. That is why I continue to devote my time to ensuring Washingtonians have the information and the support they need to die on their own terms, with dignity and control.