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Life, Death and Dignity (Part 3)

Solace in a trying time

Robert Fuller did not want to spend his final days suffering, so he turned to Death with Dignity.

by Ashley Archibald

Part 3 of 3

As Robert Fuller lay dying, he knew he was not alone.

His husband, Reese, stood by his head, crying into a pink towel. They’d been married that morning. A soprano sang over the mezzo piano melody of a violin, soft, but enough to fill the small, crowded room. Those closest to him laid their hands on his arms, torso, thighs and shins.

Downstairs, in the common room of Primeau Place, the affordable housing complex in which Fuller lived, the atmosphere was jovial, full of memories, food and music.

But later, in the bedroom as Fuller’s eyes closed, the gravity of the moment was palpable — to be there was an honor beyond grief.

Perhaps a few people in the room had watched a person die. It seems unlikely any had ever received an Evite to a combination wedding/death-day themed with Hawaiian shirts, courtesy of the host. But there’s a first for everything.

There are those by profession or by predilection who choose to stay with the dying until the dying is done, to comfort the loved ones left behind and ease the souls of the deceased into whatever comes next. They sit in calm vigil so that others, like Robert Fuller, need not be alone.

These are their stories.

Nancy Rebecca

Nancy Rebecca performs a marriage ceremony for Reese Baxter and Robert Fuller.

At 10:30 the morning of Robert Fuller’s death, Nancy Rebecca joined Fuller and Reese Baxter in marriage.

She anointed them with nag champa oil, rubbing the scent of magnolia and sandalwood into their hands and asked each to take the other in lawful and spiritual marriage. They obliged.

For nine and a half hours, the two were wed. And then, at roughly 8 p.m., Fuller exhaled his final breath.

To Rebecca’s eyes, it wasn’t the end of Robert Fuller. This was simply a new beginning.

Rebecca isn’t just a marriage officiant. That happy task was more of a favor than a calling.

Rebecca is a healer of conventional and unconventional methods. She practiced as a hospice nurse for eight years, caring for people as they groped blindly toward the eventual conclusion of life. That work takes a toll on the living as well as the dying. In 1994, she bought a book on meditation and gave the calming practice a try.

Everything changed.

“I went to bed and I had a spontaneous out of body experience,” Rebecca said. “When my spirit came back to my body I could see energy fields and I could see spirits.”

Initially, Rebecca found the experience overwhelming, she said. After all, she was a registered nurse, trained in Western medicine. Seeing spirits and energy fields simply wasn’t done.

“In some ways, the energy fields I see around people are quite beautiful. That is not what was disturbing me,” Rebecca said. “It didn’t fit with what I thought to be the truth.”

Rebecca decided to consult professionals.

Rebecca’s mother was a psychiatrist, her father a medical doctor. Afraid of going to an outside physician with her concerns, Rebecca went to her parents. Her mother reassured her.

“There’s nothing wrong with you,” her mother said.

It took time to process her new, perceptive abilities, to parse what and who she was seeing. But it afforded her the capacity to stay with people under her care, observing the angels that came to visit them and helping them understand their own brief glimpses into the beyond at the end of their lives.

Rebecca works mostly with the living these days, helping them to heal their bodies by righting their energies through meditative practice. However, her wife had known Fuller for years, and although he didn’t feel that he needed her healing talents, the pair did have discussions about what came next.

One day, she asked him what he thought the afterlife would be like.

“He said, ‘Well it’s a realm of judgment and grace. For me I hope it leans a little more toward grace,’” Rebecca recalled.

“I said, ‘Based on my experience, it does,’” Rebecca said.

Sile Harriss

Sile Harriss, a music-thanatologist by training, played harp for the dying and their families for nearly 20 years.

The harp in Sile Harriss’ apartment is roughly 22 pounds and rises to the level of her chest when she stands next to it. The burnished gold of the maple wood glows in the low light — though she’s had it for decades, the instrument looks as though it was purchased the day before.

It’s small for a harp, Harriss said. It’s a Celtic harp, not an orchestral version, meaning it lacks pedals and has fewer strings, a deficit made up for in part by small levers at the top of each string that allow her to adjust the note produced by a half step.

That’s OK, though. She could hardly bring a larger instrument into hospital rooms.

For nearly 20 years, Harriss worked as a music-thanatologist, employing ancient melodies and lyrics to respond to the needs of the dying and their families. It’s a unique profession — Harriss estimates there are only 100 of her colleagues in the United States.

Music-thanatology is more than beautiful music, Harriss said. It’s about using the cadences and meters of musical traditions from the Middle Ages to support people through the process of dying.

“Actively dying can be hard work,” Harriss said. “We’re using the music as support, able to observe and discern the sense in the room.”

While there is a repertoire of music, every session is individualized to the needs of the patient and their families. Music-thanatologists react to the breath of the patient, their heart rhythms pumping through the monitors and to the emotions of those watching them go.

Metered, comfortable lullabies might give way to unmetered plain chant as the body systems fail and the vitals weaken, requiring a piece with less structure. Some sessions involved a single phrase or bars of music used repetitively. Sometimes, relatives would request a loved one’s favorite song, or need care themselves.

If family dynamics got tense as the end neared, it was Harriss’ duty to tend to their unspoken emotional needs.

“The work at that time is to work with the family before I get to grandma,” Harriss said. “They need to let go what their hopes have been.”

Harriss trained at the Chalice of Repose, a school located near Missoula, Montana. She found herself looking for a new purpose after her marriage of 30 years ended, and a friend mentioned the school. The idea captured her, and she began preparing to move from Seattle before she was even accepted.

“The letter came 10 days before school started,” Harriss said.

Harriss would spend two years training with 14 classmates, memorizing the repertoire, learning Latin and ultimately signing on as harp faculty. When she began craving life in the city again, she moved to Portland and was hired at Providence Portland Medical Center. If her beeper went off, even in the wee hours of the morning, she would take her harp in its case, go to the bedside and begin to play.

Over time, Harriss developed neuropathy in her left hand — she can no longer feel the strings underneath her fingers and plays the harp through muscle memory. Still, the music emanating from her instrument is warm and calming.

“I’m just in awe and grateful for the opportunity to have been with people this way,” Harriss said.

Arline Hinckley

Arline Hinckley believes in doctors and medicine. She also believes in the right to die.

“We have a wonderful medical care system. It can work miracles,” Hinckley said. “Unfortunately, the tendency with all of this great medical care is to continue to treat people even when it isn’t going to benefit them.”

Hinckley is a board member and volunteer with End of Life Washington, the organization that helps patients like Fuller navigate the complicated road to dying with dignity. In the book “Extreme Measures: Finding a Better Path to the End of Life” by Dr. Jessica Zitter, Zitter compares the medical community’s response to terminal illness as a “conveyor belt,” Hinckley said.

“If you are very ill and get put on a respirator, that’s one way to get on the conveyor belt,” she said. “Artificial food and hydration is another way to get on it. Aggressive chemotherapy, and that kind of thing.

“Once you get on that conveyor belt, it is hard to get off. It is hard to say, ‘This is not what I want, please let me die,’” Hinckley continued.

Her experience in an oncology department after she graduated college convinced Hinckley that people needed a legal right to get off that conveyor belt. She saw many people die, sometimes horribly — the treatment was worse than the disease, she said.

Hinckley worked to get the Death with Dignity initiative on the ballot in Washington, more than a decade after the first of such laws passed in Oregon. She helped educate people on what it meant, and found that even those who did not want to use the law themselves saw value in affording others the opportunity.

She has also assisted people through the process herself.

“People are so full of grace and bravery at that time. They’re very determined,” Hinckley said. “The medication tastes terrible and some people have difficulty swallowing it, but I’ve seen 85-year-old, 95-pound ladies just chug that stuff. They’ve made up their mind, taken care of unfinished business, mended fences, come to a spot religiously where they feel this is OK. They’re just ready.”

End of Life Washington volunteers stay after the person has fallen asleep to help family and friends with the passing. The process can be healing for the living as well — the planning of the death allows people to come to terms with it more totally than a sudden loss, she said.

“They’ve done the work. So, of course they’re sad, but in some ways they’re relieved as well because the person they love is not going to be suffering any longer,” Hinckley said.

Only eight states allow people the option to take their own lives. The most recent law passed in New Jersey in March. Organizations like End of Life Washington are working to maintain the momentum so that everyone, regardless of their location, has an option at the end.

“People deserve a choice,” Hinckley said. “It’s not a choice everyone might make, but options are important to people.”

Complete Article ↪HERE↩!

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Life, Death and Dignity (Part 2)

Learning how to die

Robert Fuller sits in his apartment on Capitol Hill, contemplating his rosary.

by Ashley Archibald

Part 2 of 3

When Robert Fuller decided to die, it was a choice informed by personal experience.

Fuller, 75, suffered from terminal cancer. He started feeling sick in July 2018. By September, a CT scan found a tumor growing under his tongue. The news didn’t surprise him.

“I knew it was there,” Fuller said in April. “I could smell it.”

It was a sour scent, he said. More basic than acidic. He could smell it clearly when he was in bed, his face pressed against his pillow.

“I wrapped my head in a pillow trying to smell it. I wasn’t attempting to do anything else,” Fuller said. His body might be failing, but his humor was intact.

Fuller considered treating the cancer medically. He started a round of chemotherapy in January, but didn’t keep it up. As a nurse to the dying, he’d watched cancers take hold despite desperate attempts to hold the disease off.

In many cases, the supposed cure was as bad as, or worse than, the disease itself, he thought.

So, Fuller worked with a medical team to get access to life-ending drugs under Washington’s Death with Dignity Act. On May 10, surrounded by family, friends and some journalists, Fuller injected the drugs into his gastric tube and fell asleep. He would not wake up.

Fuller was able to die on his terms because he found doctors willing to help him and a pharmacy willing to procure or make the medicines he needed. But that isn’t always guaranteed.

The medical community is far from settled on the question of Death with Dignity or, more generically, physician-assisted suicide (PAS). The Code of Medical Ethics, a guide provided by the American Medical Association, opposes PAS, saying that it is “fundamentally incompatible with the physician’s role as a healer.” Add onto that a growing consolidation of medical services under Catholic organizations, run under the belief that suicide is a mortal sin, and the question of assisted dying rises from an ethical debate to a religious edict.

Doctors have covertly engaged in helping their terminal patients die for decades, but access to this style of care was based on relationships and stealth, not need or as a right. As the right-to-die movement expands to new states, advocates hope that will change.

Lay of the land
Only eight states and the District of Columbia afford people the right to die with the help of their physicians. New Jersey is the most recent after the state legislature passed a law similar to Washington’s in March.

Under those laws, physicians decide if they want to help their patients through the legally prescribed process. Some hospitals ban the practice outright. Individuals question their role. As a doctor, having sworn the Hippocratic Oath to “do no harm,” could that include prescribing death?

According to the Washington State Department of Health, 115 physicians and 51 pharmacies assisted 212 terminal patients in 2017 —  the last year for which numbers are available. The vast majority operate west of the Cascades. On average, only 10 percent of people who use the law live east of the mountains.

Much of that is related to access, since many of the health care facilities on the east side are associated with Catholic organizations, said Helene Starks, an associate professor of bioethics and humanities at the University of Washington who has studied assisted death for nearly 30 years.

“The fact is that the Catholic health systems are the primary providers in the state outside of the western side, and the non-Catholic organizations are more prevalent on the western side than eastern side,” Starks said.

The UW Medical system — which for these purposes primarily includes Harborview Medical Center, University of Washington Medical Center and Valley Medical Center — allows its doctors to participate in the Death with Dignity process.

Not all want to, however.

Mollie Forrester was the associate director of social work at Harborview Medical Center, and it fell largely on her team to help patients navigate the complexities of the Death with Dignity law. But, the patients weren’t the only ones who needed help.

“It has been a powerful experience to watch doctors get this request from patients,” Forrester said. “This idea of facilitating the hastened death is a process for them.”

Forrester started with the team soon after the law went into effect in 2009, on maybe the third or fourth case that the Harborview team dealt with. The idea was that their group would coordinate the implementation of Death with Dignity, and that once it was established they would farm out the work to social workers in different disciplines.

But Harborview saw so few cases that Forrester and her team ended up handling the care altogether.

It was up to Forrester to sit down with patients asking to end their own lives and explain to them the process and help them through any logistical hurdles that might arise. Their interview might be the last time she ever spoke to those patients.

“I’m walking in and saying, ‘Hi, it’s nice to meet you, let’s talk about your death,’” she said.

Doctors needed help, too. Some refused to participate, flat out. With others, Forrester felt she was performing the role of social worker.

“From where I’m sitting, it’s easy,” she would tell them. “It’s my profession, patient autonomy and patient choice.

“They’re supposed to be healing and helping people live,” she said.

The ask
Death is the inevitable conclusion of life. Fuller knew that, had known that for a long time. He joined the Hemlock Society as a young man, a group that advocated for the right to die. The Washington state society was founded in 1988 as the AIDS epidemic ravaged the gay community.

“I believed in the cause before Kevorkian,” Fuller said, referencing Dr. Jack Kevorkian, the controversial physician who helped as many as 130 people to their ends. He was nicknamed “Dr. Death” by the media and was ultimately arrested and sentenced to up to 25 years in prison for second-degree murder. He got out in eight.

Robert Fuller injects a morphine solution through his gastric tube.

The national Hemlock Society considered itself predominately educational, and when the Washington chapter wanted to assist people in their deaths, they split off to form Compassion in Dying. In 2003, Compassion in Dying was renamed End of Life Washington.

Arline Hinckley is a board member and volunteer for End of Life Washington. She and others in her organization offer advice to medical institutions and direct assistance to individuals who need help finding doctors or prescribing pharmacies. They may also be with the patients at their deaths.

“I feel like it’s a tremendous honor to be allowed in someone’s life at that very vulnerable time,” Hinckley said.

Hinckley’s second job out of graduate school in the 1970s was performing a social work role on a hematology/oncology team, caring for deeply ill patients.

“I saw a lot of people die very badly,” Hinckley said. “I was asked to help a person and I could not do that. I felt terrible, because they were suffering so greatly.”

Her experience led her to join the then-Hemlock Society.

“I have always felt that what happens to your body should be directed by you,” Hinckley said. “People deserve a choice. It’s not a choice everyone might make, but options are important to people.”

In fact, of the small number of people in Washington who use Death with Dignity in a year, as many as 30 percent never take the medications. Some got the prescription and never filled it. Others planned to, but died before they could get the medications.

The medications become almost a safety net, not because people want to die, but because that element of choice is important to them, Starks said.

“I’ve never met anybody in death with dignity who wanted to die,” Starks said. “They wanted to live a lot longer, but they also didn’t want to be a victim of their own illness.”

Even though it’s legal, it’s not easy to come by the medications that are necessary. Many people don’t know they have the option. Hospitals and pharmacies aren’t advertising that they provide these services.

In fact, a pharmacist who spoke to Real Change for this article did not want to be named at all.

“People judge you for the kind of activities that you’re doing and sometimes they equate that with good and evil,” the pharmacist said. “‘You must be evil because you’re providing this.’ Really? If you talk to this family that is suffering with this patient, that are looking for not a means to an end but an option at the end? You’re depriving them of options.”

Moving forward
The medical community is still grappling with PAS.

The issue came up before the American Medical Association in summer of 2018 and was effectively tabled rather than rejected or affirmed.

In November, the AMA’s House of Delegates deliberated a report from its Council on Ethical & Judicial Affairs (CEJA) that looked into the legal and ethical ramifications of PAS. The existing guidance in the Code of Medical Ethics remained unchanged, but delegates also voted to take the matter up at a future policy-making meeting.

Attitudes are changing. More than two-thirds of Americans believe that doctors should be allowed to help terminally ill patients who are in pain to die, according to a 2015 Gallup poll. Young adults were particularly supportive with 84 percent of people between 18 and 34 on board with the concept.

For some, the act is still seen as suicide. Robert Fuller believed differently.

“It’s taking responsibility for the rest of my life,” Fuller said.

Complete Article ↪HERE↩!

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Life, Death and Dignity (Part 1)

Robert Fuller planned every detail of his wedding — and his death soon after

Reese Baxter-Fuller puts a ring on his new husband Robert Baxter-Fuller’s hand during their wedding ceremony in their apartment.

by Ashley Archibald

For the last hours of his 75 years on Earth, Robert Fuller was married to a man who he loved.

“I anoint you,” said Nancy Rebecca, a nurse, clairvoyant and sometime wedding officiant, “Mr. Robert and Mr. Reese Baxter-Fuller.”

The cameras flashed, the tape rolled as Fuller and Reese Baxter exchanged vows, rings and a chaste kiss. It was a simple wedding. The couple sat on the couch in their shared apartment in Primeau Place, a senior housing building on Capitol Hill. Baxter wore a black and white sweater, Fuller a relatively restrained Hawaiian shirt with large, colorful flowers against a cerulean background, ready for the party that waited for the newlyweds downstairs. The ceremony commenced at 10:30 a.m. By evening, Robert Fuller would be dead.

The cancer was slowly choking him
Robert Fuller planned every detail of his death. He knew who he wanted to see — invites had gone out weeks before — and what music he wanted to play him out. He’d also planned the food, although he himself couldn’t eat it.

Fuller was dying of a virulent strain of cancer, a disease that lodged itself in his throat and, over the course of a year, was slowly choking the life from him. At the end of March, he already had significant difficulty swallowing, leaving most of his meals to be transmitted through the gastric tube installed in his stomach, hidden by clothes that hung on his tall, wasted frame.

A nurse by training, Fuller knew what the future held if he decided to wage chemical war against his opponent.

“I’ve taken care of patients like me,” Fuller said, sitting in his recliner, staring out his window at a view of the sunlit Puget Sound. “I have a friend whose father died of the same thing 50 years ago. He did pursue all of it, all of the radiation. I only did a little bit of it. He did it all and it was a horrible death.”

That slow, painful, fruitless fight was not how Fuller wanted to spend his final days. He wanted to die as he lived — on his terms. He turned to Death with Dignity.

Robert Baxter-Fuller sits on his bed in blue pajamas. The clock, above, ticked down the minutes until 3 p.m. when Fuller would ingest his life-ending medications.

A public death
Death with Dignity began as an initiative passed by Washington voters in 2008. It allows terminal patients to end their lives by ingesting toxic amounts of drugs rather than suffer in their final months, weeks or days. They ease into sleep and never wake up.

Fuller became aware of it when a woman from California moved into the senior housing building in which he lived and helped manage.

“Wendy was her name,” Fuller recalled. “She started telling me about it pretty quickly, because that’s what people do when they meet me. Strangers tell me everything. On the bus, I don’t care where. They confess to me, they tell me their worst medical problems. They do. It just happens.”

Wendy moved to Washington to kill herself. It was one of the few states that allowed it. Although California would follow suit in 2016, Wendy didn’t have that long.

On the day she was to die, Wendy had a sign put on her door that read “Do Not Disturb.” When it came down, she was gone.

“I said, ‘Woah,’” Fuller said. “That solidified it for me. That’s what I’m going to do.

“But,” he continued, his voice hushed into a conspiratorial whisper, “mine is not going to be private. That is not the way I lived my life.”

Sharing stories, saying goodbye
Everybody seemed to call it something different. “Death Day.” “The Day.” Fuller didn’t care. When he spoke of it, he generally just referred to it as May 10.

“I’ll see you on May 10,” he told visitors in the days leading up to the event.

A gaggle of brightly colored helium balloons marked the entrance to Primeau Place’s common room, an open space lit harshly with fluorescent light. A piano stood against the eastern wall, a drumset assembled beside for the occasion.

People flooded the space, spilling out into the small patio that was sheltered from the spring sun by large trees. They munched on hors d’oeuvres, laughed and shared stories of Uncle Bob, as most people called him.

All the while, Fuller held court, seated next to his new husband as his guests came, one by one, to say their final goodbyes. He held a walking stick sanded down and polished into a smooth, golden surface and carved with tight grooves.

Someone he had sponsored made it for him while still using crack, Fuller had said more than a month before.

“I think that’s significant,” he said. “For people who are still into drugs and think nothing positive can still come out of this.”

That depth of compassion, of acceptance and understanding drew people to Fuller. He’d sponsored many in the room through the Alcoholics Anonymous program. He spent 10 years as a nurse in King County jail. He was an active member of St. Therese Catholic Church. He arranged for Primeau Place to “Adopt-A-Drain” outside the building to give back in another way.

Fuller was many things, said Scott Farrell, who had met Fuller at a spiritual retreat for gays and lesbians more than 40 years prior.

“He was always there for me,” Farrell said. “He was a light in my life. We haven’t been in touch a lot lately, but whenever I see him, it feels like there is no time.”

Nicholas Bross was one of the people Fuller sponsored. He was dressed in a Hawaiian shirt, a gift from Fuller specially for his big day.

“I’m supportive of his choice, his decision to do this,” Bross said. “I’ve been telling people that if I were in his shoes, I’d be doing the same thing.”

It took time for some to accept what he wanted to do, Fuller said. Most made their peace with it after the initial shock. Fuller gave them the space to process on their own terms. They might not be ready, but Fuller was. He had been for decades.

A partygoer leans over to speak to Robert Baxter-Fuller.

Escaping death during the AIDS epidemic
It was 1985. Fuller was living in Chelan, Washington, a handsome young man in his early 40s playing Schroeder, the philosophical musician, in a local production of “You’re A Good Man, Charlie Brown.”

He stopped paging through an old album and touched a photograph of his younger self with a frail finger. In the moment, a dapper Fuller was standing on stage with a seated woman playing a smitten Lucy.

“I have HIV in this picture, but I don’t know it,” Fuller said.

He had moved to Chelan to get away from the death he saw ravaging the gay community in Seattle. Fuller, a recovering alcoholic, watched as two or three young men a week disappeared from his Alcoholics Anonymous meetings.

“It just kept going, so I moved to Chelan,” he said. “There were no gay people and no AIDS, I told myself.”

He’d already taken the test by the time he appeared in that musical. The results would come back negative, but in his bones, he knew they were wrong.

That was when Fuller began packing his bags.

That was the phrase his community used to describe planning for their own deaths. Getting your living will in order, designating a power of attorney, making arrangements for your loved ones.

In the 1980s and 1990s, HIV could be a death sentence. Fuller stood by the sides of two men who he loved as they died. Chet, a swarthy man seated next to Fuller as the pair stare out over a lake, would be reduced to skin and bones in a matter of months. Bill, whom Fuller thought of as his first husband, although they could not legally wed, also died. Tom, an artist who Fuller described as a Jesus figure, appeared in a picture with Fuller at Chet’s funeral.

He would be dead a year later.

At the height of the epidemic, Fuller “packed his bags” every six months to a year. His viral load soared to 700,000 and his T-cell count dropped to 76, laying his body open to infection and possibly death. But he survived until the cocktail of drugs created in the late 1990s hit the market. He resisted the previous medications — those cures also killed.

Until his death, Fuller’s viral load was undetectable, but he carried the symptoms of HIV on his body. When he walked, he would pick up his feet like they were on marionette strings and plant them slowly and carefully on the carpet. It was called peripheral neuropathy, he said, lapsing into the assured cadences of a health care professional.

The loss of proprioception that comes with peripheral neuropathy brought Reese Baxter into his life. Baxter needed a place to stay, Fuller needed someone to help him — he’d fallen many times and struck his head.

“I didn’t know it would be three years,” Fuller said.

How to die with dignity
Dying seems easy. After all, we spend so much time and energy avoiding it.

Dying with dignity? That takes work.

Robert Baxter-Fuller prepares a mixture of morphine and CBD oil to ease his pain.

First, you have to find a doctor willing to let you die. The law doesn’t mandate that doctors participate in Death with Dignity, it only says that they can. Many won’t, for personal reasons. Others can’t because they are forbidden to do so by their employers.

Hospitals that belong to the University of Washington medical network opt in, said Professor Helene Starks, an expert in medical ethics who has been studying end-of-life issues for three decades.

“I think that the general feeling is as a public institution enacting a public law, there was an obligation to provide access,” Starks said.

Swedish Medical Center, in contrast, is affiliated with Providence Health & Services, a Catholic nonprofit organization founded by the Sisters of Providence in 1856. The Swedish Medical Center in Seattle does not forbid its employees from engaging in Death with Dignity, according to a position statement issued after the law passed, although some Catholic-affiliated hospitals do.

This partly explains why as much as 90 percent of people in Washington who use the act do so west of the Cascades — access is extremely limited in the eastern portion of the state.

Fuller was able to receive care at Harborview Medical Center. First, he had to make an oral request. The doctor evaluated him to make sure that he was of sound mind — people with dementia cannot use Death with Dignity. It takes two doctors, one attending and one consulting, to complete the process.

No less than 15 days later, you have to make a second oral request. Fuller’s doctor accidentally scheduled his follow-up 14 days after the initial appointment. He had to come back the next day.

Once a person has jumped through these hoops and gets the prescription for the drug, they must find a pharmacy willing to fill it. This gets complicated, because pharmacists, like doctors, do not have to fill the script if they are opposed to the practice and some don’t have the expertise.

If you can find one — and there are a few in the area — the pharmacy has to be able to access the drugs.

Secobarbital — marketed under the name Seconal — is the preferred option. Called “reds” back in the day, secobarbital was used as a sleep aid until the danger of overdosing and negative interactions with alcohol became apparent.

Bausch Health, formerly Valeant Pharmaceuticals, bought the patent for the drug when it expired. Although the chemical makeup of the drug hasn’t changed in 80 years, the price did. When California passed its End of Life Option Act in 2015, the price of the drug doubled, according to NPR.

Today, the 100 capsules needed to end Fuller’s life would have cost him more than $3,000 without insurance.

Medical professionals created a cheaper cocktail of four drugs that cost roughly $400, but that is where the expertise comes in. A generic pharmacy can’t make the cocktail, but a compounding pharmacy can.

In the end, Fuller would use the cocktail — his pharmacy was not able to get the necessary amount of secobarbital.

The whole process takes weeks if not months for people who, by law, must have a six-month prognosis.

“You have to adhere to a strict process,” Fuller said. “You don’t just walk in and say, ‘I want to get rid of Grandma. I hear you have death panels.’”

Final act
As the clock ticked closer to 3 p.m., the mood at the party changed.

The jovial atmosphere gave way to the weight of the moment as the minute hand ticked by, moving inexorably closer to the time of Fuller’s death.

Robert and Reese Baxter-Fuller look at each other as people say their last goodbyes to Robert.

He went upstairs, his husband on one side, his walking stick on the other. There were balloons outside his apartment door as well, framing a nametag attached to the name plate that read “Uncle Bob.”

Bodies pressed into the small apartment, filling the T-shaped corridor that led from the front door to Fuller’s room on the left and the living room on the right. Fuller went into his room with a select few — he changed into a ocean-blue set of shiny pajamas, the “Hugh Hefner” pajamas, as he liked to call them.

He lay there, his twin bed strewn with pink rose petals, Baxter at his side, holding his hand.

In March, Fuller said that Baxter would hold his hand in a “fishhook,” a wrestling grip that is next to impossible to break until one of the parties lets go.

“He’s now the person whose hand I want to be holding when I die,” Fuller said. “He’s going to give me the cue when I’m falling asleep, or when I seem to be sleeping, that I can leave.”

When the doors opened, Fuller’s friends, adopted family and loved ones shuffled into the room until there was no space left. People squeezed into every nook and cranny, shoved into a closet, trying to use a flimsy clothing basket for support.

By law, Fuller had to ingest the drugs on his own. Many choke it down — the taste is terrible, bitter. He took a syringe and injected the poisonous cocktail into his gastric tube.

Almost a third of people who get the prescriptions never take it. Not Fuller. Now, he would die.

Baxter gripped Fuller’s hand, the other holding an electric pink towel he used to absorb his tears. A violinist put bow to strings, playing Amazing Grace and Ave Maria. As Fuller’s eyes closed and his body went still, the observers raised their voices in song. Those closest to him placed their hands on his body in farewell.

Robert Baxter-Fuller eases into a final sleep.

Technically, he was asleep. Death would come later, after the drugs wrested his final breath away from the cancer that tried to steal it. But Bob Fuller was gone.

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Solace after suicide…

My journey to forgiveness

by The Listener

For Katie Anders*, coping with suicide grief means remembering how her husband lived, not how he died.

Every suicide story that hits the headlines stirs the pain for those of us who have been bereaved by such a loss. The headlines are bigger and somehow more shocking when such high-profile names as Anthony Bourdain and Kate Spade join those of our loved ones. But the grief for those left is the same.

I lost the love of my life to suicide. He was middle-aged, very successful in his profession and loved by family and a wonderful group of friends.

Our communities have such a sense of helplessness and hopelessness in the face of suicides. It is in the crisis period leading up to a suicide that there is the chance for effective intervention, and yet there is little effective help.

And, yes, there is a still a stigma around mental health. For us, it meant we had to protect my husband’s reputation for when he returned to work. The professions are not a lot more enlightened than anyone else.

The crash happened one May day. I walked in on him sitting at his desk at work, and was shocked to find him weeping. He said, “I can’t do this any more.”

We visited our GP and at first it seemed like exhaustion; just plain burnout. We had just come back from three weeks’ travelling and he hadn’t slept well; he had returned to a mountain of work. It was a job he loved and in which he had quietly excelled. He was a gentle-natured man who worked in a world of ambitious colleagues and he had forged a different path to the top. He was respected by most, admired by many.

We quickly arranged for his work to be done by others and he took “stress leave”. Within weeks, it was clear the malevolent black dog of depression was stalking him. We did all the right things: exercise and a good diet. He had great support from loved ones. He began using antidepressants and sleeping tablets. We saw an occupational psychologist, who was enormously helpful. Yet still the black dog circled.

Weeks passed. Then one day I found him curled into himself on a chair, his back to me. I tried to engage him, but he wouldn’t look at me. I took his face in my hands, forcing him to meet my eyes. I demanded to know what he was thinking, but in reality I knew.

He had reached a tipping point. We urgently needed more expertise. An acquaintance who was a good psychiatrist agreed to see him immediately (and privately).

I was determinedly optimistic we would get through it. We were a “lucky couple” whose marriage had fulfilled each of us. We laughed a lot and loved a lot. We had lovely children, now grown and forging their own lives. Many saw our marriage as one of the successful ones; we both thought so, too.

His promise to me that he wouldn’t act on his thoughts seemed to be enough to hold him back from the edge – that and the increasingly heavy doses of medication he needed. We began cognitive behavioural therapy (CBT) with another psychologist.

A few weeks later, things seemed to be moving in the right direction until some odd things started to happen. The medication had tipped him into a manic state, so he had to withdraw from all the antidepressants. The psychiatrist felt that a prior serious head injury had probably caused the manic response, so mood-stabilising drugs were required.

Some normalcy began to return to our lives. My husband continued his programme of health and fitness and after a few weeks, he seemed well enough to return to work for short periods. We breathed easier.

But then an emotionally stressful event occurred: he was desperately concerned about someone close who was in strife overseas. His sleep was seriously disrupted and he was very worried. The depression was renewing its grip and as the antidepressants were now contraindicated, we were at a loss for effective solutions.

The psychiatrist hoped that since the relapse was in its early stages, we could work to stop its progression by using mindfulness meditation and more CBT and counselling. He was very low, but again, he reiterated his promise to me.

Three days later, he was dead. The black dog’s work was done.

*The writer’s name has been changed.

Questions and guilt

On the night he died, I sat at his bedside, shattered by the horrific development, the crashing grief threatening to crush us all. I was full of confusing questions and guilt. How could he have done this? How could he have walked past me as I slept and not woken me and sought my help?

Sometime in the wee hours, I decided to write him a final letter. And as I began, some things crystallised. I needed to forgive him before we let him go. I read him my letter aloud, then later repeated the words at his funeral. That night, wracked with the deepest pain, I told him, “The man who did this thing was a man in the grip of a fierce depression. It was the depression that broke the promise, not the man that we love. That’s why, distraught as I am, I have to forgive you, because all that I know and have experienced of you through all the years tells me that you never wanted to hurt us, never wanted to leave us.”

Some months later, I heard someone (also bereaved by suicide) on a radio programme put it very succinctly: her husband hadn’t been leaving her or her children, he was leaving himself.

Years before, I had read Elisabeth Kübler-Ross’ book On Death and Dying and, later, I trained and worked as a volunteer with terminally ill people, and learnt about bereavement support.

It’s accepted now that work around the stages and processes of grief was too rigid. Each grief experience is unique and people don’t necessarily experience all the stages or go through them in any particular order. For example, while others felt anger at my husband, I never have. Even pathetic attempts to somehow manufacture anger failed. How could I be angry at someone so broken?

In the aftermath, I felt the deepest sadness for him, for his loss, for all that he would never get to experience. I felt devastatingly sad for our kids. But for me, the grieving process was delayed by my upbringing. It held messages of “Don’t you feel sorry for yourself” and “Pick yourself up and get on with it”.

It took a long time to let myself feel the full devastation of my own loss. The numbing effects of shock meant that I walked around in a world that felt surreal, that simply couldn’t be true. This wasn’t how our love story was supposed to end. We were supposed to grow old together, travel, have grandchildren.

Tortuous paths

Suicide grief holds so many “If only …” and “What if …” questions. What if I had heard him get out of bed? What if I had handcuffed him to me to keep him safe? What if he had slept through those darkest hours before dawn and woken to sunshine?

The “what ifs” are where the self-torture lies. I felt so guilty that I struggled to want to live. Sometimes I still feel surprised that I didn’t die of the brokenness I felt.

Logic says there is no useful purpose in following these tortuous paths. But some years on, they still come into my mind and I speak to those thoughts as firmly and logically as I can.

I learnt a lot from my counsellor about self-forgiveness. It is more of a journey than a destination. Someone spoke to me about the idea of practising my husband’s presence rather than his absence. It seemed to break down some of the enormity of it all. If I had to completely and immediately accept his absence from my life, you might as well have asked me to swim the Atlantic. But if I could practise his presence, which permeated my life, while slowly adjusting to his loss, then it felt more like paddling in the waves at the water’s edge and not getting completely out of my depth.

Practising his presence is simply being mindful of his hand in the life I continue to live. It’s being able to access his way of thinking an issue through. His presence is in the millions of memories. It’s practising his habits of observing and appreciating the beauty around. He is visible in his imprinting on our kids … aspects of him in their personalities. It’s in watching rugby with my daughter and shouting the way he shouted. It’s in the kids’ love of language and awful puns. It’s in the thousands of photos taken over the years.

We remember how he lived and not how he died, but the truth is that suicide grief is a unique grief. People aren’t comfortable around it. I accept now that even if my life should suddenly become deliriously happy, the loss of such a precious partner through suicide will forever be a hugely black awfulness on its timeline.

Actress Dawn French said that when her father committed suicide, it was like a bomb went off in their family. It’s an apt description. My life is forever changed, my confidence diminished and my happy moments are often tinged with poignancy. At the risk of sounding overly dramatic, I feel my heart carries a permanent scarring.

Few understand the complexity and longevity of suicide pain. It isn’t easy, as one friend put it, to “move forward” as a simple act of will. If my husband had died of a heart attack or cancer, I know that grief might have been easier to move on from.

Yet I take joy in our amazing children, their partners and now a grandchild. I am fortunate in having some close friends. I try not to let the manner of his dying take more than it should. Above all, he wouldn’t want that and he would hate the pain that his suicide caused. Despite it all, I will be forever grateful that my life was greatly enriched by a truly lovely man.

Complete Article ↪HERE↩!

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How to talk to your friends and family about death and dying

It’s a conversation nobody really wants to have because it’s about a subject none of us wants to face…

By Donna Fleming

It’s important, nevertheless, to talk to people close to us about death and dying, so that when the time does come we know what their wishes are and how best to support them.

Also, telling family members what you want when it comes to that end-stage of life can make a difficult time easier for them.

Funeral directors constantly see families grappling with grief and having to make decisions when a special person to us has passed, and say having had “that conversation” can take away some of the pressure.
Dean Maxted, assistant manager at H Morris in Northcote, Auckland, says it not only helps with the logistics of organising a funeral, but also opens the door to getting people talking about matters that are important and have perhaps been left unsaid.

“Talking about personal preferences and what you would like when it comes to your funeral can be a really good conversation starter to all sorts of other big stuff,” says Dean. “It can lead to really valuable discussions that you might not have had otherwise.”

In some cases, it can help people come to terms with facing the inevitable and it can also strengthen bonds or mend fences. It may also be a chance to let go of long-held secrets that can weigh someone down.

And whether you’re having the conversation with someone living with a terminal illness or the subject has been raised because you know it is something that will have to be dealt with one day, it is important to pay attention to what the other person has to say.

“Death and dying is not a rational topic and people don’t always react how you think they will,” says Dean, who has seen people respond to facing death and the loss of someone they care about in just about every way possible during his years in the funeral business.

Then there are the huge range of emotions people can experience when they’re faced with dying. These include fear of what will happen and anger that their lives are being cut short, through to disappointment that they have not achieved what they wanted to. Some people are so worn down by illness and old age that they can’t wait to go. Others are very grateful for the care they’ve had and feel satisfied with their lot.

“No matter how they are feeling, the important thing is that you are talking about what they are going through and that they know they matter enough for someone to listen to them,” says Dean. “Taking that on board is as generous a thing as you can do for anyone.”

Tips on having a conversation about a tough subject

• Be sensitive to the needs of the other person. Raise the subject at an appropriate time and don’t be pushy if they don’t want to talk about it.

• If you find it difficult to handle having the conversation yourself, maybe there is someone else who can do it instead, for example a relative or friend, a minister or pastoral carer, or a counsellor.

• Write down their wishes. This is not only helpful for later on, but also shows that they are being listened to.

• Be respectful and calm.

Complete Article ↪HERE↩!

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More elderly and fewer children…

who will make final decisions in the future?

By Angela Y. Lee

With an aging, childless future, who’s going to take care of us when we get old? Who’s going to make those end-of-life decisions for us when we can no longer decide for ourselves?

A recent global report from Axios, “The Aging Childless Future,” shows that in the U.S., a fertility rate below the “replacement rate,” according to the Centers for Disease Control, occurs at the same time as the rise in global life expectancy. In 2015, the global life expectancy of about 70 years old will rise to 83 years old in 2100, according to U.N. data.

The report states, “Except in Africa, by 2050 about a quarter of the world population will be 60 or older. At about 900 million now, their numbers will rise to about 3.2 billion in 2100. By 2080, those 65 or older will be 29.1 percent of the global population — and 12.7 percent will be 80 or over, Eurostat reports.

A troubling takeaway from the report is that there simply will not be enough workers to support the elderly, In the U.S., there are fewer than four workers per retired person. In seven European countries, there are three and in Japan, there are two workers per retired person.

The implications of this population shift affect public policy, health care, elder care, end of life decisions, the overall economy and every family in America and across the world.

I understand this firsthand. My mother is 96 years old and has Alzheimer’s. Two months ago she suffered a massive stroke and was in a coma for two weeks. Her heart rate slowed down to the 50s and 60s; her blood pressure dropped to 70/44. Her body was not ingesting the food she was fed through a feeding tube.

My siblings and I decided to remove the tube to make her feel more comfortable. We were preparing for her departure; and the priest (who was a former student of hers) came to administer the Annointing of the Sick. And one of us was always there with her.

Gradually her heartbeat got stronger, her blood pressure started to climb and she was able to breathe without the support of the ventilator.

The doctors’ prognosis was bleak — our mother would inevitably get pneumonia, or some infection. We had discussed and all agreed that we would not want to prolong her suffering. So no resuscitation, no reattaching to the ventilator and no antibiotics.

What about the feeding tube? One option was not to reintroduce nutrients through the feeding tube and essentially let her waste away. The other option was to reintroduce nutrients and wait for some infection to happen (which according to the doctors was just a matter of time). Starving mother to death might be a more humane decision, but it was immediately rejected by my sister who is a Buddhist. She thought our mother wanted to live and we should honor her wish and give her a chance.

Mother did not have a living will. We were all trying to make a decision on her behalf — based on what we thought she wanted, based on what we thought was best and on what we personally would like to happen if we were in her situation.

Our mother had on occasions before the stroke complained that she was bored and life was not worth living. But that didn’t necessarily mean that she wanted to die. Her complaint could be her way of telling us that she wanted us to visit more often.

Families all across the globe are faced with similar scenarios. In a future where perhaps children are not there to facilitate these decisions, how will these life and death decisions be decided and by whom? Leaving these decisions to chance, or to administrators, health-care workers and other strangers is a frightening possibility.

Everyone should have a living will — in order to depart this world with dignity, free from prolonged pain and suffering. However, an end-of-life decision made as young and healthy people may not be the same end-of-life decision when older, weaker and perhaps unable to communicate.

Research in affect forecasting — or  the ability to accurately predict future emotions– has consistently shown that people are reliably inaccurate in predicting how they would feel in different situations

In one study, younger participants with a mean age of 25.5 years and older adults with a mean age of 74.3 years have been shown to make different predictions about how they would feel if they win or lose money.

Older adults reported feeling less negative than younger adults when they lost money. Who is to say that end-of-life decisions made when we are young are the right decisions for us when we are old?

My own research has shown that when people are cognitively depleted or physically tired, they feel more vulnerable and are more likely to engage in self-protection. Across different studies, depleted participants reported being less likely to engage in risky behaviors such as having unprotected sex and more likely to engage in risk-reduction behaviors such as getting tested for kidney diseases and chlamydia.

When people are not able to think properly or reason logically, they revert to relying on instincts. And the survival or self-preservation instinct is a very strong instinct. So if we are trying to make an important end-of-life decision for ourselves when we can still think properly by anticipating what we would want when we could no longer think properly, we may be off the mark.

If our mother’s will to live is what enabled her to come out of the coma and get off the ventilator, then withholding nutrients and let her waste away is equivalent to murdering her.

Many people have a will,  a legal document that specifies the distribution of one’s assets after death. People change their will as circumstances change and they re-decide who should inherit how much of their assets.

People should also have a living will, a document that allows people to state their wishes for end-of-life medical care, in the event they become unable to express their decision. Health-care providers are usually the ones to suggest or remind patients to have a living will.

But more than just having a living will may be the best practice. Given the frequency of poor performance on affect forecasting and given that perspectives and sentiments often change as we age, perhaps perhaps there needs to be a system in place to prompt regularly revisiting the terms of the living will.

Our mother is in a hospice/rehab facility. She takes pleasure in the daily visits and phone calls of her five children. We are doing our best.

Everyone needs to learn more about end-of-life experiences in order to make better end-of-life decisions for ourselves and for our loved ones.

Perhaps there can be a public policy on not just who has the legal authority to make end-of-life decisions, but also with guidance on how to make these decisions.

In the not too distant future, for people who are childless, these decisions are best not left to chance.

Complete Article ↪HERE↩!

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5 strange causes of death in the medieval period

Tasked today with confirming and certifying deaths resulting from unnatural or unknown causes, coroners were officially introduced in England in 1194, primarily for the purpose of collecting taxes. But their early records of deaths that occurred in unusual or suspicious circumstances offer an incredible insight into daily life, attitudes and living conditions in the Middle Ages that we would not otherwise be privy to…

Here, Janine Bryant from the University of Birmingham, who has researched medieval coroners’ rolls of three English counties – Warwickshire, London and Bedfordshire – reveals some of the most intriguing causes of death… 

1 Animals

Animals were responsible for numerous deaths in the medieval period.At Sherborne, Warwickshire in October 1394, a pig belonging to William Waller bit Robert Baron on the left elbow, causing his immediate death. Similarly, in London in May 1322 a sow wandered into a shop and mortally bit the head of one-month-old Johanna, daughter of Bernard de Irlaunde, who had been left alone in her cradle “at length”.

Cows appear to have been somewhat difficult to manage in the Middle Ages, and caused several deaths, including that of Henry Fremon at Amington, Warwickshire in July 1365. He was leading a calf next to water when it tossed him in and he drowned.

2 Drowning

People of all ages fell into wells, pits, ditches and rivers, and the coroners’ rolls of Warwickshire, London and Bedfordshire all record that drowning was responsible for the largest percentage of accidental deaths.

In August 1389 at Coventry, Johanna, daughter of John Appulton, was drawing water when she fell into the well. The incident was witnessed by a servant who ran to her aid, but while helping her fell in also. This was overheard by a third person who also went to their aid – he too fell in, and all three subsequently drowned.

3 Violence

While there are some regional and gender differences, approximately half of the entries in the medieval coroners’ rolls record violent deaths that occurred both within and outside of the home.

One domestic incident occurred at Houghton Regis, Bedfordshire in August 1276, when John Clarice was lying in bed with his wife, Joan, at the hour of midnight. “Madness took possession of him, and Joan, thinking he was seized by death, took a small scythe and cut his throat. She also took a bill-hook and struck him on the right side of the head so that his brain flowed forth and he immediately died”. Joan fled, seeking sanctuary in the local church, and later abjured the realm [swore an oath to leave the country forever].

Others deaths occurred in more mysterious circumstances: in Alvecote, Warwickshire in April 1366, Matilda, the daughter of John de Sheyle, was crossing some woods when she discovered an unknown teenage boy who had been feloniously killed and was found to have multiple wounds.

The rolls record that deaths frequently arose from disputes, and thus many seem to have been unpremeditated acts. The weapon often appeared to have been whatever was at hand, such as the case of Thomas de Routhe who died at Coventry in May 1355 after he was hit on the head with a stone.

4 Falls

There are many accounts of people who fell to their death, and they did so in a variety of ways: at Coventry in January 1389, Agnes Scryvein stood on a stool to cut down a wall candle. She fell off, landed on the stand for a yarn-winder, and ailed for two hours before eventually dying of her injuries.

At Aston, Warwickshire in October 1387, Richard Dousyng fell when a branch of the tree he had climbed broke. He landed on the ground, breaking his back, and died shortly after.

A London case occurred in January 1325 at around midnight when “John Toly rose naked from his bed and stood at a window 30 feet high to relieve himself towards the High Street. He accidentally fell headlong to the pavement, crushing his neck and other members, and thereupon died about cock-crow”.

5 Fun

The coroners’ rolls show that the Middle Ages weren’t all doom and gloom, and that people did actually have fun – although it occasionally ended in disaster.

At Elstow, Bedfordshire in May 1276, Osbert le Wuayl, “who was drunk and disgustingly over-fed” was returning home. “When he arrived at his house he had the falling sickness, fell upon a stone on the right side of his head, breaking the whole of his head and died by misadventure”. He was discovered the following morning when Agnes Ade of Elstow opened his door.

In Bramcote, Warwickshire in August 1366, John Beauchamp and John Cook were wrestling “without any malice or considered ill-will”. In the course of their game John Cook was tossed to the ground and died the following day from the injuries he sustained.

Complete Article ↪HERE↩!