When ‘content’ means choosing the day you die

Lynn Kennedy Ottawa in apartment on Wednesday Feb 5, 2020.

By Kelly Egan

One day last week, Lynn Kennedy finally got the medical news that would end her chronic pain and stop the many-sided suffering she has endured for nearly 10 years.

Doctors agreed to help her die.

Kennedy, 58, had been trying for months to have a medically assisted death and went public with her wishes in February to draw attention to a major barrier in Canada’s regulations.

Applicants could only be approved if their death was “reasonably foreseeable” and, at the time, hers was not, leaving her to cope with years, possibly decades, of declining physical and mental health.

“I’m not me anymore,” was the devastating way she expressed her station in life.

Kennedy, a former administrator with the Ottawa Police Services Board, had been battling a condition called transverse myelitis, a disorder caused by inflammation of the spinal cord and one that can mimic the symptoms of multiple sclerosis.Over a decade, her mobility was gradually reduced to the point that she went from using a cane to an electric wheelchair. She was unable to get out of bed or get to the washroom and, in 2019, moved to a retirement home where she needed support for daily living.

A severe gastro-intestinal blockage landed her in hospital in May. An attempt to give her liquid medicine via a “nasty and uncomfortable” feeding tube earlier this month did not go well, as she has a strong gag reflex.

“That lasted about a day,” she said in an interview from her fifth-floor bed at The Ottawa Hospital’s Civic campus. “I just started screaming, ‘I’m done, I’m done, get it out, I’m done.’”

Because the consensus from two doctors was that the upper-tract blockage — left untreated — would bring about her death in fairly short order, her MAiD, or medically assisted death application, was approved.

Kennedy died in hospital Tuesday, but not before reinforcing her message about the program’s shortcomings.

“I shouldn’t have to wait for someone that I don’t know, didn’t know, and never met, to decide my fate,” she said in a final interview.

“Let it be the patient’s choice. Don’t let a stranger decide.”

Though she worries for her daughter Courtney, 37, and two grandchildren, Kennedy said her strongest reaction to being approved was relief.

“When I heard I was accepted, it was a big sigh and I thanked (the doctor).”

*

Two hours after, Courtney called with the news, pulled over by the side of the road. Her mother went peacefully, in a matter of minutes, before the clock struck noon.

“I’m relieved for her. We had a great last couple of days together and even better final moments.” Lynn’s older sister Gail was also present. That morning, medical staff came by, saying they had learned a good deal about her rare condition, MAiD and the force of one patient’s courage.

The night before, Kennedy received some welcome news. A genetic researcher in the United States said he would be anxious to have spinal cord samples from her, to better study transverse myelitis and help develop treatment options.

It was the first time, Courtney was told, that such a sample would be received by Harvard University’s medical school.“It was a really, really great thing for mom to hear. She always wanted to help somebody or help with something when she went.”Her eyes were also donated. Her mother’s determination to control her own outcome never wavered, Courtney added.

“She absolutely, 100 per cent had no regrets,” she said. “We both said the most perfect things to each other right at the end.”

Among the last things her mother said was “thank you.”

*

Kennedy spoke of the long stretches she has spent in hospital during the last several years, each stay leaving her a little more diminished, the 30 pills she took daily, the loss of independence, the reliance on a call button for basic needs.

“Every time I go in the hospital, I lose something. Every time, and that goes back four years,” she said.After first applying in December, she met all of the MAiD requirements except for the “foreseeable” clause and initially even had a date picked out — Feb. 8 — when her request was denied.

Lynn Kennedy in her apartment in Ottawa Wednesday Feb 5, 2020.

Kennedy went public with her concerns in a story by this newspaper at a time when the federal government was — and still is — proposing changes to the Criminal Code provisions that permit medically assisted death in this country.The revisions were needed after a Quebec Superior Court ruled the “reasonably foreseeable” requirement was a violation of a person’s constitutional rights. The court ordered Parliament to amend the law by July 11.

A spokesman for the Justice department said the COVID-19 pandemic has made it impossible for legislators to meet the deadline and an extension to Dec. 18 has been sought in a court motion. More than 6,700 Canadians have had a medically assisted death since the law came into effect in 2016.Among many changes, the “reasonably foreseeable” section of the law is being rewritten to give patients more control of the timing. The issue of “advanced consent” is also being addressed, in cases where individuals lose mental capacity in the course of their illness.Kennedy, a single mother who admitted to feelings of “cold heartedness” in this seven-month process, said she was not afraid of dying.

“No. Nobody knows where we’re going.”She spent her final days in the company of her daughter and sister and, even in her final hours, never lost her sense of humour. (The food at the General campus, she said, was “gross,” and of her iron-resolve to have an assisted death, she said: “I made two doctors cry today.” No mention, meanwhile, of the grizzled scribbler, wiping something from his eye.)“I’ve been isolating myself for the last year and a half,” she said of tidying up loose ends. “I’m quite content.”We do not doubt her on that point. She had, after all, the final say.

Complete Article HERE!

Dying virtually

– Pandemic drives medically assisted deaths online

The late Youssef Cohen moved from New York to Oregon in 2016 because of its aid-in-dying law. During the pandemic, assisted dying for terminal patients has gone online.

By

The coronavirus has stripped many of a say in the manner and timing of their own deaths, but for some terminally ill people wishing to die, a workaround exists. Medically assisted deaths in America are increasingly taking place online, from the initial doctor’s visit to the ingestion of life-ending medications.

Assisted dying laws allow terminally ill, mentally competent patients in 10 U.S. jurisdictions to hasten the end of their life. Waiting periods of 15 to 20 days mean that patients with acute COVID-19 won’t likely meet the requirements of these laws.

But the move to digitally assisted deaths during the pandemic has enabled other qualified patients to continue to exercise the right to die. While telemedicine is helping some people die on their own terms, it also makes the process harder on family members, who must now take a more active role in their loved one’s final act.

Assisted dying in America

I have spent the last four years studying assisted dying in America, particularly in Oregon and Washington, which have the country’s longest-standing assisted dying laws. California, Colorado, the District of Columbia, Hawaii, Maine, Montana, New Jersey and Vermont also allow medical assistance in dying.

A quirk in these laws has enabled the process to go virtual. While extremely restrictive in most ways, U.S. assisted dying laws don’t require a physician or other health care provider to be present at an assisted death.

Assisted dying laws require two doctors to independently evaluate a patient’s request for medical assistance in dying. But patients must be physically able to ingest the life-ending medication themselves, a safeguard that ensures they are acting voluntarily.

In Canada, by contrast, clinicians typically administer the lethal dose through an injection. Normally that’s a faster, safer and more effective method. But COVID-19 concerns are compelling some Canadian providers to suspend assisted deaths.

Attending to the dying

Though U.S. physicians aren’t required to attend an assisted death, many patients and their families do have help. In 2019, according to the Oregon Health Authority, 57% of all assisted deaths in Oregon were attended by a physician, another health care provider or a volunteer.

Trained volunteers – many of them former nurses, social workers and behavioral health experts – are critical in helping patients navigate the tricky path toward an assisted death. They know which physicians are willing to see aid-in-dying patients and which pharmacies stock the necessary medications.

In the United States, doctors prescribe a compound of four drugs – digoxin, diazepam, morphine and amitriptyline – to be mixed with water or juice. Within minutes of drinking the cocktail, the patient falls asleep, the sleep progresses to a coma, and eventually the patient’s heart stops.

Volunteers help mix the medication and supervise the ingestion, allowing families to be emotionally present with a dying loved one.

Now, because of the coronavirus, volunteers are accompanying patients and families over Zoom, and physicians complete their evaluations through telemedicine, based on recommendations released by the American Clinicians Academy on Medical Aid in Dying in March 2020.

Telehealth – a health care solution long used in remote areas – has become a critical tool of the COVID-19 pandemic. But some aid-in-dying physicians have drawn on telemedicine to reach far-flung patients for years.

“My patients love telemedicine,” Dr. Carol Parrot, a physician who lives on an island in Washington, told me during a Skype interview in 2018. “They love that they don’t have to get dressed. They don’t have to get into a car and drive 25 miles and meet a new doctor and sit in a waiting room.”

Parrot says she sees 90% of her patients online, visually examining a patient’s symptoms, mobility, affect and breathing.

“I can get a great deal of information for how close a patient is to death from a Skype visit,” Parrot explained. “I don’t feel badly at all that I don’t have a stethoscope on their chest.”

After the initial visit, whether in person or online, aid-in-dying physicians carefully collate their prognosis with the patient’s prior medical records and lab tests. Some also consult the patient’s primary physician.

‘Tough and tender situations’

The pivot to telemedicine hasn’t significantly changed that process. But patient advocacy organizations and physicians say the pandemic has amplified existing problems of access to assisted dying.

“These are tough and tender situations even without COVID,” said Judy Kinney, executive director of the volunteer organization End of Life Washington, via email.

Invariably, some terminally ill patients who wish to die face barriers. Some assisted living and nursing facilities have policies against assisted dying for religious reasons.

During the pandemic, residents in these institutions who lack access to a digital device – or the skills to videoconference with a doctor – may not be able to qualify for the law, according to Dr. Tony Daniels, a prescribing physician from Portland.

Meanwhile, a family member who objects to assisted dying may more easily undercut the process when a volunteer isn’t there in person to make sure a patient’s final wishes are carried out.

Facilitating death

Dying via telemedicine can be hard even on family members who stand behind their loved one’s decision, my research finds. Without a volunteer or physician present, families must assume a more active role in the dying process.

That includes mixing the life-ending medications themselves. Pre-pandemic, many families told me that preparing the lethal cocktail would make them feel like they were facilitating – and not just morally supporting – a loved one’s death. They were glad to outsource this delicate task.

Now they don’t have that choice.

Yet the option to assist in a loved one’s final act may be a comfort in this pandemic. It allows dying people to choose the manner and timing of their own death – and ensures they won’t be alone.

Complete Article HERE!

I’m an oncologist with terminal cancer, and I support medical aid in dying.

Here’s why.

As my cancers progress, I want to be in charge. I want the legal option to die, if need be, before it is too late to consent to my own death.

By Dr. Tom R. Fitch

Remarkable advances in medical care are helping us live longer. But that means there also are an increasing number of people living with advancing serious illness.

The vast majority understand they are living with a terminal condition, yet they and their families are unprepared for the final stages of life. Relatively few have had discussions with their physicians about their prognosis and end-of-life care options. Their wishes and goals are not discussed, and no meaningful informed consent regarding further disease-directed treatments is provided.

“Let’s try this,” becomes the default recommendation, and patients are commonly led down a path of relentless disease-directed therapies of limited to no benefit. Tragically, more treatment too often results in more suffering and shortened survival.

With the expert end-of-life care currently available, dying and death can be meaningful and peaceful for many. But to believe all deaths are “natural” – peaceful and without suffering – is just wrong.

I cared for patients with cancer for more than 30 years and increasingly provided palliative and hospice care over the final 17 years of my career. I saw agonizing deaths despite my best efforts, and it was not rare for patients to ask me how I might help accelerate their dying. That, however, was not an option in either Minnesota or Arizona where I practiced.

Patients must understand their options

Now, I too am faced with terminal illness. I have multiple myeloma and non-Hodgkin’s lymphoma, and despite aggressive care, I have not achieved remission. My cancers are incurable.

I contemplate dying and my death and those thoughts include consideration of medical aid in dying. I do not know if I would ever self-administer a lethal dose of medications, but I pray that the option is available for me.

I do know that we must help patients and families overcome the taboo of discussing their prognosis, dying and death. We need to facilitate meaningful end-of-life care conversations among patients, their families and health-care providers; promote the completion of advance directives; and encourage discussions of patients’ wishes, goals and values.

Patients and families must be informed of the many end-of-life care options available – including the expertise of palliative care and hospice providers, discussions regarding the possibility of stopping disease-directed therapies, withholding or withdrawing more advanced supportive care and/or devices, voluntarily stopping eating and drinking, and palliative sedation.

Patients near the end of their life also should have access to medical aid in dying (MAID).

What medical aid in dying laws do

I fully respect the conscience of those who oppose MAID; they are opposed for passionately held personal beliefs and values. I simply ask that they similarly respect my strongly held beliefs and values.

Guidance in the American Medical Association Code of Medical Ethics understands this divide: “it encompasses the irreducible moral tension at stake for physicians with respect to participating in assisted suicide. Supporters and opponents share a fundamental commitment to values of care, compassion, respect, and dignity; they diverge in drawing different moral conclusions from those underlying values in equally good faith.”

MAID is now legal in nine states and the District of Columbia, available to more than 70 million residents. After nearly 50 years of real-word experience, there has been no evidence of the “slippery slope” or “increased societal risk” opponents routinely cite.

We have seen no indication of a heightened risk for women, the elderly, poorly educated, the disabled, minorities, minor or those with mental illness. There has been no rising incidence of casual deaths and no evidence to suggest that MAID has harmed the integrity of medicine or end-of-life care.

MAID laws clearly provide adequate safeguards and allow for the position of dissenting physicians. The laws respect their conscience and give the right to any physician not to participate.

This is patient-centered care

Those of us who support MAID are asking for the same – respect for our conscience and considered judgment. We do not believe we are doing harm. We are caring for a competent adult who has a terminal illness with a prognosis of six months or less. We are providing patient-centered care consistent with the patient’s wishes, goals, beliefs and values – helping that patient avoid protracted, refractory and avoidable suffering.

One false narrative espoused by opponents – that “participation in MAID is suicide” – needs to be addressed. Participants do not want to die. They have a progressive terminal illness, and meaningful, prolonged survival is no longer an option.

They have full mental capacity with an understanding of their disease, its expected course and their prognosis. They have the support of their family. They feel their personhood is being destroyed by their illness, and they want their death to be meaningful and peaceful.

None of this is true for people who die by suicide.

Personally, I no longer struggle with the ethics, morality and other controversies surrounding MAID. Ethical principles and moral laws alone are just not sufficient to answer the complex questions surrounding an individual’s dying and death.

Our diverse country and our Constitution forbid us from imposing our own religious and faith beliefs on others. When we try, we are forcing others to conform to our beliefs and we are turning a blind eye from truly seeing the very real human suffering that is in front of us.

It is devastating for patients if we ignore their life stories, their family, their culture, and the impact of their disease and treatment on their life and well-being. The value of their life, as they define it, has vanished and they want to die on their own terms.

This is not a challenge to God’s divine sovereignty but a challenge to the disease itself. Patients are vowing that it will no longer be in charge.

As my cancers progress, I too want to be in charge. I want the legal option to die, if need be, before it is too late to consent to my own death. I desperately want to avoid recruitment into that borderland where I would vegetate as neither here nor there.

I ask for your unconditional trust and I ask that those opposed to MAID for themselves, respect my prayerful discernment and personal requests for end-of-life care as I believe it is consistent with my needs, beliefs and values.

Complete Article HERE!

Physician Aid in Dying Used Mostly by White Patients

By Roxanne Nelson, RN, BSN

In the United States, medical aid in dying (MAID) is used mostly by white patients, even after states with more racially and ethnically diverse populations legalized the practice.

Pondering why this is the case were speakers here at the National Clinicians Conference on Medical Aid in Dying (NCCMAID) 2020 during a session on ethnic and cultural considerations in aid in dying.

Factors such as culture and religious beliefs may play a role in preventing some individuals from considering this option, but a 2019 survey from the California Health Care Foundation found that there was support for MAID among African Americans.

“When asked if race and ethnicity prevented you from getting the services and healthcare you needed, 43% of black respondents said yes, that it has happened to them,” said Thalia DeWolf, RN, CHPN, clinical coordinator, Bay Area End of Life Options, Berkeley, California.

“But when asked if they would support the right to die when terminally ill, 70% of blacks and 82% of whites said yes,” said DeWolf.

“This is surprising, since it is almost at the level of the general population, and given the unequal access to medical care and unequal outcomes, they still believe that medical aid in dying should be legal,” she continued.

“We don’t bring this up to suggest complacency, but it brings up some interesting conversation to be had,” she added.

A recent study found that in Oregon and Washington, the two states where the practice has been legal for the longest period, most patients were non-Hispanic white individuals with some level of college education (JAMA Netw Open. 2019;2:e198648.)

In 2016, MAID became legal in California, a state with a much larger and far more diverse population compared to Oregon and Washington. Even so, about 88% of people who use California’s physician-assisted death law are white, according to 2018 data from the California Department of Public Health.

Speaking to Patients

There is an overall lack of participation by black patients in all programs related to end-of-life care, noted Tracey Bush, MSW, LCSW, regional practice leader, End of Life Option Act Program, Kaiser Permanente, Southern California.

“This includes aid in dying, and we consider this lack to be a healthcare disparity,” she said.

“We would be remiss to look at the disparities and participation in these programs without thinking about the disparities in the rest of our healthcare system,” she explained. “We need to think about where the line can be drawn between education, empowerment, and recruitment,” she explained.

From a programmatic perspective, she pointed out, information, pamphlets, and staffing are designed in a way that couches the MAID decision as individualistic, but not all patients have this point of view.

“My argument is that this population doesn’t really view medical decision making in that manner,” she said. “So are we designing our materials and having conversations in a way that really speaks to these patients?”

She also emphasized the need for a diverse care team across the board with regard to ideas, perspectives, cultural beliefs, gender, and ethnicity.

Complete Article HERE!

The State of the Medical Aid-in-Dying Debate

Diane Rehm updates us in her new book, ‘When My Time Comes’

Diane Rehm spoke during her book kickoff event Feb. 3, 2020, at the Sixth & I synagogue in Washington D.C.

By Richard Harris

Maybe, just maybe, America’s greatest taboo — talking openly about death — is itself dying a slow death. Too slow, if you ask Diane Rehm, author of the new nonfiction book, When My Time Comes.

“Until we overcome our fear about talking about death,” the longtime NPR host says, “few of us can have the end of life we envision. We’ve been so focused on living and accomplishing and moving forward that we don’t think about death as part of life.”

For 37 years, Rehm’s morning talk show — first on Washington, D.C.’s public radio station WAMU, then on NPR — allowed her to focus on living, accomplishing and moving forward. But that changed as she witnessed her husband of 54 years, John, decline to the point where he pleaded with his doctor to prescribe him a medication to end his life. And without a medical aid-in-dying law in Maryland, his doctor refused.

So, John Rehm, wracked by Parkinson’s disease, with a severely diminished quality of life, decided to starve himself to death. No water. No food. No medication. It would take him 10 days to die.

And that began Diane Rehm’s journey into advocacy. After signing off her talk show in 2016, she has immersed herself in the world of the terminally ill and studying the limited options available to those for whom palliative care (focused on relieving pain and symptoms) is not the solution to their end-of-life misery.

“We focus so much on happiness and joy surrounding birth, but we think about death as this place no one wants to go — but we’re all going there. Everybody is,” says Rehm in her office at WAMU, where she hosts the podcast “On My Mind.” A February 2019 episode discussed end-of-life issues and why so many people’s end-of-life wishes are not realized.

Discussing Aid in Dying

For several years, Rehm, 83, has crisscrossed the country, speaking to the terminally ill and their families, as well as advocates and opponents of medical aid in dying. She also talked to ethicists and physicians on both sides of the issue. It’s all part of an emerging national conversation about the right to die that Rehm has captured in her new book.

A companion public TV documentary of the same name as her book to be presented by WETA in Washington, D.C., is due out in the spring of 2021, and is being shown at festivals. See the trailer here.

During a speaking engagement in a church in Falmouth, Mass., Rehm asked audience members to raise their hands if, “you are one of those people who is not going to die.” Not a hand went up, of course, and it provoked a lot of nervous laughter.

Some of the crowd had gathered at that church for a “death café,” part of a movement that began in Europe in 2004 in which people of all ages talk candidly about dying, their fears and hopes for the end of life. It’s a sign that America’s reluctance to bring death out of the shadows may be fading.

The medical aid-in-dying movement for the terminally ill — some call it death with dignity —began in Oregon in 1994. It took another 14 years for Washington state to pass its law. “But since then, Montana (2009 State Supreme Court ruling), Vermont, California, Colorado, Washington, D.C., Hawaii, New Jersey and Maine have followed suit.

Each jurisdiction allows a patient who has no more than six months to live (certified by two physicians) to request a lethal dose of medication as long as that person has the capacity to decide and can self-administer.

Changing Minds on Medical Aid in Dying

More than a dozen other states are considering such a law, including Maryland, where Rehm testified last year in support of medical aid in dying. The bill lost by a single vote in the state Senate. But supporters, including the bill’s sponsor, the Maryland House of Delegates’ Shane Pendergrass, are optimistic that the End of Life Option Act will pass this year.

“Everyone is one bad death away from supporting the bill,” Pendergrass, a Democrat from Howard County, said during a news conference in January 2019.

Case in point: Maryland Del. Eric Luedtke, a Democrat from Maryland’s Montgomery County, who originally opposed the legislation. “The two biggest things that gave me pause were the concern about normalizing suicide (three of his family members had attempted suicide) and that some folks in the disabilities community believed aid in dying could be abused,” he told Rehm, who included his comments in her book.

Then, Luedtke’s mother, stricken with esophageal cancer, was in extreme pain — even with palliative care. A few days before she died, “she got the bottle of liquid morphine she had been prescribed, tried to drink it, tried to commit suicide,” he said.

A few months after his mother died, Luedtke signed on to the bill. “I began to question whether I had the right as an elected official, or even as her next of kin, to make that decision (of whether she could use a lethal prescription),” he said. “I think her death would have been less painful and there would have been more closure, had that option been available to her.”

Joe Fab, producer and director of Rehm’s documentary, became interested in end-of-life issues after his sister and both his parents died within four years. “We are just too frozen up in this country, talking about death,” he says.

The Core Conflict

Dr. Lonnie Shavelson, a former emergency room doctor who founded Bay Area End of Life Options in Calfornia, distilled the complex debate surrounding medical aid in dying, to a phrase, included in Rehm’s book: “You’ve got the ethic of autonomy against the ethic of maintaining life.”

The American Medical Association sides with maintaining life, opposing what it still calls “physician-assisted suicide” because the group says it’s “incompatible with the physician’s role as a healer.”

The question that remains unsettled in the context of the physician’s Hippocratic Oath is whether a doctor does more harm than good in writing a lethal prescription for a suffering, terminally ill patient.

The Catholic Church and other religious groups have not given their blessing to medical aid in dying. Diane Rehm is quick to say she respects all opposing views, but remains steadfast in her support for the terminally ill individual choosing when his or her life should end.

The public likely associates two people — Jack Kevorkian and Brittany Maynard — with medical aid in dying more than anyone else. Kevorkian, the controversial pathologist who assisted in the deaths of 130 terminally ill patients in the 1990s and was sent to prison, kicked off the national debate over the right to die.

But it was Maynard who put a new, young face on the right-to-die movement and perhaps did more than anyone in accelerating the growth of laws. Given six months to live with a brain tumor, Maynard moved to Oregon to take advantage of that state’s death-with-dignity law. Before she died on Nov. 1, 2014 at 29, her videos promoting medical aid in dying went viral.

Rehm’s Take on the Subject

At the conclusion of Rehm’s book and documentary, she asks her grandson, Benjamin Zide, a Dartmouth sophomore studying medical ethics, to pick up his phone and take a video of her as she described what would be for her a “good death.” Here’s what she says:

“I came across a perfect paragraph that Anne Morrow Lindbergh left behind. She wrote, ‘To my family, my physician and my hospital: If there is no reasonable expectation of my recovery from mental or physical disability, I request I be allowed to die and not be kept alive by artificial means and heroic measures. I ask that medication be mercifully administered to me for terminal suffering, even if it hastens the moment of my death. I hope that you who care for me will feel morally bound to act in accordance with this urgent request.’”

Last night, as Rehm kicked off her book tour at Washington, D.C.’s Sixth & I synagogue, she recounted her mother’s suffering before dying at age 49 and how John Rehm’s father and mother committed suicide. So, the subject of death was part of the conversation at their dinner table, even before John was diagnosed with Parkinson’s.

Diane Rehm says she told her husband, “When my time comes, I need some help from you. I don’t want to live to the point where I’m sick and infirm and cannot take care of myself.” And, she says, “John looked at me and said, ‘I feel the same way.’”

Complete Article HERE!

Assisted dying is not the easy way out

By

One in every five Americans now lives in a state with legal access to a medically assisted death. In theory, assisted dying laws allow patients with a terminal prognosis to hasten the end of their life, once their suffering has overcome any desire to live. While these laws may make the process of dying less painful for some, they don’t make it easier. Of the countries that have aid-in-dying laws, the U.S. has the most restrictive. Intended to reduce unnecessary suffering, the laws can sometimes have the opposite effect.

My work as a medical anthropologist explores the field of medicine from a cultural angle, focusing primarily on birth and death. Over the past four years, I’ve studied how access to a medically assisted death is transforming the ways Americans die. I have spent hundreds of hours accompanying patients, families and physicians on their road to an assisted death. And, I have witnessed some of these deaths firsthand.

This research has taught me one thing: An assisted death is not the path of least resistance. For many, it is the path of most resistance. Those who pursue it face a range of barriers, at a time when their health is rapidly declining. Some patients navigate these waters successfully and manage to secure the coveted bottle of life-ending medication. Others give in to the opposition or simply run out of time.

History of the laws

The country’s first right-to-die law, Oregon’s Death with Dignity Act (1994), came after a fierce, century-long struggle to give terminally ill patients access to some form of medical assistance in dying.

Legislators in Ohio and Iowa proposed the first two of these bills in 1906. Known as the “chloroform bills,” they envisioned the use of chloroform on fatally ill or injured patients to induce their death, but their terms were so flawed that they never saw the light of day. Other legislative bills – introduced in Nebraska in 1937, Florida in 1967 and Idaho in 1969 – met similar fates.

When a committee of lawyers, physicians and activists sat down to craft Oregon’s Death with Dignity Act in 1993, similar ballot initiatives had recently failed in Washington (1991) and California (1992). To appease vocal opposition, lawmakers laced the Oregon statute with a long list of restrictions and safeguards.

Unlike all previous proposals, the Oregon measure no longer allowed for euthanasia. That’s the act of injecting a patient with a lethal dose of narcotics. Under the law, patients would have to ingest the lethal dose themselves – a final protection meant to ensure the absolutely voluntary nature of their death. The act also introduced a 15-day waiting period between a patient’s first and second request, intended as a period of reflection.

It worked. Oregonians narrowly approved the measure, but a three-year legal stay prevented it from being enacted. In 1997, Oregonians reaffirmed their support for the act, and it became law. Since then, each state that has added an assisted dying law to their books has either followed the strict Oregon model or, in the case of Hawaii, added more constraints. Those include requiring a mandatory mental health exam and a 20-day waiting period in between requests.

The letter of the law

Unlike other countries that permit assisted dying, such as Canada, the Netherlands and Belgium, in the U.S. intolerable suffering and an incurable medical condition alone are not enough to qualify someone for an aided death. A patient must already be within six months of the end of their life – coinciding with the admission criteria for hospice. That means protracted degenerative diseases with open-ended prognoses like amyotrophic lateral sclerosis (ALS) don’t usually qualify, at least not until a patient’s breathing becomes severely compromised.

Every year, dozens of eligible patients who apply for an assisted death are so close to the end of their life that they die during the mandated waiting period. And by the time a patient becomes eligible for an assisted death, they may have missed the window when they are able to ingest the lethal medication. In contrast to their Canadian, Dutch and Belgian colleagues, American physicians cannot administer these drugs to their patients.

Lou Libby, a pulmonologist from Portland, Oregon, told me that the physical manifestations of many advanced neurodegenerative diseases bump up against this requirement. Again, consider ALS. Alongside their diminishing ability to breathe, patients with ALS almost always lose their ability to swallow.

“You have to be able to ingest the medication yourself. And here you have all these patients who can’t even swallow.”

As I learned during my research, the stress over their ability to swallow can provoke a great deal of anxiety in patients, particularly when it comes to correctly timing their death. Taking the medication too early means cutting short a life still worth living; waiting too long means possibly missing their chance. To have the kind of death they prefer, some patients choose to die earlier than they would have liked.

Cultural roadblocks

Despite popular backing for medical assistance in dying – seven in 10 Americans support it – the cultural stigma and moral ambivalence around these laws remain potent. Across the country, many religiously owned health systems decline to participate in their state’s assisted dying law.

In rural parts of Oregon and along the coastal corridor, where Catholic health systems often run the only hospital in town, patients routinely struggle to find two physicians who will approve their request, or a pharmacist who will fill their prescription. Many hospices refuse to cooperate with a patient’s desire to seek an assisted death, leading patients to feel abandoned. Many assisted living and nursing facilities still prohibit the practice under their roof, forcing patients to make alternative arrangements, sometimes at a nearby motel. In trying to reclaim control over the way they die, these patients often are being stripped of some of that control in the process.

Medical aid-in-dying will become an even bigger issue as baby boomers face the end of their lives. It is mainly older patients who want access to an assisted death. In Oregon, for example, nearly 80% of those who sought medical assistance in dying in 2018 were 65 or older. Boomers, as in many other aspects of their lives, likely will want more say over their deaths.

Assisted dying reframes how we, as a society, understand the potential of medicine, not as a way to extend life but to mitigate the process of dying. Patients who endure intractable, painful diseases sometimes reach a moment when the prospect of staying alive feels worse than the prospect of dying. At that point, the idea of having a say over the timing and manner of their death can bring enormous comfort. But few are aware of all the hurdles they must clear to exercise this kind of control.

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A Chaplain on How to Talk About the Right to Die and Death With Patients

By Diane Rehm

Martha Kay Nelson has had a long career in hospice work. Rather than choosing hospice work, she believes hospice work chose her. Her training was at Harvard Divinity School. She did a yearlong internship as a hospice chaplain during her graduate work. The year after she graduated, she managed to combine her career as a chaplain with her work in hospice. She is in her mid-forties, with short hair and hazel eyes. Her warm, open face, earnest manner, and easy smile help me understand why she is so good at her work. We sit together in her office at Mission Hospice & Home Care in San Mateo, California.

DIANE: How do you feel about California’s “right to die” law?

MARTHA: Well, I have many feelings, and they could vary depending on the day or the hour. It depends on whom I’m talking to, and what her or his experience is. My overall sense about the law is that people have a right to make their own health-care decisions, whether it’s at the end of life or at any time up to that point. I know people have a hard time having these conversations, particularly early on, before they’re even sick. And then they get sick and it’s crisis time, and those decisions have to be made quickly. The End of Life Option Act to me is part of a spectrum of all those decisions and conversations that come at the end. It’s a new end point on that spectrum.

D: You’ve been in a leadership position here at Mission Hospice, not only learning, but teaching. Tell me what have been the elements of transmitting this information to others.

M: It’s been an interesting learning curve. I think even seasoned hospice professionals have had to adjust to a new option for patients, stepping into that terrain. The elements that have been important in teaching staff members, working with health-care partners, have been to get folks to acknowledge at the outset that this is a challenging topic, this is new terrain, there are profound implications, and not to shy away from it.

Some folks here at Mission Hospice didn’t want to participate, but the majority did, to have their questions answered or share some of their thoughts, their concerns. We’ve done this regularly enough that people felt they could talk freely about the End of Life Option Act. We didn’t want it to be whispered about awkwardly in the corner, that this law is coming and our patients are going to have the right to choose the option. As an agency, we’re not advocates for the law, we’re advocates for our patients, and we won’t abandon them. Having said that, any of our employees, if they’re not comfortable, don’t have to participate. They can opt out if they need to, and they would be fully supported.

D: What kinds of questions did you get from staff? What kinds of issues did they raise?

M: At the outset, a lot of general questions about details of the law, how it works, how are we supposed to communicate with our colleagues around it, what can we say to the patient and what can’t we, those kinds of things. Questions arose about accessibility to the law. If I have patients who are saying they just want to end it all, and they’re saying this a lot, but they’re not specifically asking about the law, then can I bring it up with them or not? We have a policy here at Mission Hospice that we let the patient lead. If a patient is inquiring about his or her options, then we will be there.

That’s one kind of question. Other clinicians have asked about folks who haven’t had the chance to be educated about medical aid in dying, or don’t have access to resources where they might have learned about it. What if it’s something they’d like to avail themselves of ? There’s kind of a social justice question there. There are also questions arising from specific cases. Every case is different.

D: Can you give me an idea of how many patients have actually come forward and asked you about the right to die?

M: We’ve been tracking some of these numbers, and to date, we’ve served around forty-five people since California’s law went into effect, which was a lot more than we anticipated. When back in 2016 we set out to draft our policy and prepare ourselves, we thought maybe we’d have four or five people in the first year. We had twenty-one. And about that same number inquired about the law, but never went all the way through the process. Either they actually died before they had a chance to use the law, or they changed their minds. I would imagine that it was split evenly.

D: Tell me about the process. So a patient comes to you and asks about the process, the law. How do you respond?

M: My initial response as a chaplain would be one of curiosity. I’d be interested in learning more about their thoughts and why they’re asking. It’s a big thing to ask about. Sometimes people are afraid to even inquire. They’re afraid of being shamed or judged. So I’d want to let that person know that I’m glad they’re asking. And then we’d have a conversation, whatever they would wish to say at that time. Next, I would contact the doctor and the rest of my interdisciplinary team members and would let them know the topic had been broached. Then a doctor would probably go and make a direct visit, which would be considered the first formal request, if the decision was made to pursue that course.

We really encourage the other team members to make sure they keep talking to one another—the social worker, the nurse, the spiritual counselor, home health aides, and volunteers who might also be involved. Through a team effort, we would need to have clarity on how much privacy the patient would want. Patients have the right under the law to not tell anyone but the doctors they’re working with, not even family members. Our experience has been that that’s not often the case. Usually there is communication with family.

D: Who makes the initial judgment that the patient has six months or less to live?

M: The attending physician on the case. And if the patient inquires about the law, and his or her doctor says, “I’m not comfortable being involved with this,” that’s one way we might get involved. Or it might be a hospice patient already on our service.

D: I saw in your waiting room a brochure for Death Cafes. Can you tell me about them?

M: The Death Cafe movement started several years ago in England. It’s basically having a conversation over coffee and cakes in a public venue. Anyone is welcome to attend, and the purpose is open-ended. The goal is to talk about death in any way you wish. There does need to be a facilitator, someone who is able to establish ground rules in etiquette so folks aren’t talking over one another. Folks that host them tend to have some level of experience in end-of- life care, in thanatology, but anyone can sign up. I’ve led a couple of them.

D: How successful do you think Death Cafes are as teaching tools, as comforting elements in the whole discussion of death?

M: I think Death Cafes are successful in meeting the needs of folks who already want to talk about death. If you show up at a Death Cafe, there’s something in you that is already ready to speak and to hear what other people are thinking. It can serve as a cross-pollination of ideas and thoughts, and normalization. The cafes meet a kind of thirst that we have in our culture to speak about these things openly and not be afraid. How you get people to Death Cafes is another question. I’ve had some people say they’re offended by that name, or they don’t want to attend a Death Cafe because it sounds morbid.

D: What is the best way to reach people? How do we get the conversation started even before we’re sick?

M: There’s no one best way. It’s about being creative and really getting to know your community. In my family, I’ve been lucky in that we’ve always talked about death openly. I have ongoing conversations now with my father. He’s about to turn eighty-three, and I really value the kinds of discussions and ruminations we have.

It’s wonderful. We’ve started kind of reflecting theologically, talking about, wondering together, what happens after we die. To be able to have that in a father-daughter kind of way. I’m well aware of what a precious opportunity it is to hear his thoughts. As he comes into the “lean and slippered pantaloon” time of his life, as he might say—some of his last chapters— I feel really blessed that he’s willing to discuss it openly.

D: How do you open that discussion for the general public?

M: I think it takes courage and a conscious decision to ask a question of someone in a moment when you feel there’s an opportunity. Someone speaking about her or his health, some decline, or illness, grief, and you ask, “How would you like things to be?” And perhaps even being a bit persistent if you get an initial brush-off, which often happens, but trying again, and saying, “ Really, I would like to know.”

I also think reaching children is important. I think that in our death-denying culture, children are really shielded from all things involved with death. Things happen at the funeral parlor, no longer at home, and we try to protect children in all kinds of ways. But if you don’t allow children who want to be involved in a loved one’s illness or death, I think you’re doing them a disservice. You’re keeping them from something that is integral to life for all of us. The earlier you can start to have those experiences and wonder about them and ask the questions, the more skills you will have as you age to meet them openly.

D: Have you decided what you want for yourself at the end?

M: I have no idea. I do know that I would like to have the right and the option to choose. I understand that even just knowing that the option is available can bring a lot of comfort to people. I haven’t faced a terminal illness that might cause me great physical pain or suffering, or mental or spiritual suffering. There’s one area that gives me pause, which is when folks choose medical aid in dying because they’re used to being in control in their lives. They might not have physical or mental or spiritual suffering, but they want to have personal agency. I think they entirely have the right to do that. But I also believe we’re in a culture that distorts the degree to which we think we’re in control. So on a soul level, on a much deeper level, I wonder, Are we messing with something there? How is it that we’re making such a profound decision from a place of a distorted need for control? And then I think, Well, what do I know about their journey and what they need? Maybe this is the one time they’ve ever made a strong, solid decision for themselves, and who am I to say what it is they need to learn?

D: But isn’t pain, intractable pain and suffering, and the inability to care for oneself, a sufficient reason to respect someone’s decision in terms of his or her final say?

M: Absolutely. I think clinicians have more trouble when they can’t observe visible intractable pain, when they can’t see physical or emotional suffering. It’s harder for clinicians to get their heads and hearts around that. Why is someone making this choice? And so I do a lot of counseling with staff about that, exploring how to meet the needs of the person when we don’t see them suffering, at least not on the surface. And we have to remind ourselves, clinicians need to express those feelings and concerns, so that when they’re dealing with patients directly, they can be respectful and meet them on their own terms.

Complete Article HERE!