After 73 Years of Marriage, This Canadian Couple Chose to Die on Their Own Terms

This is a truly beautiful story about two people dying.

By Hemant Mehta

George and Shirley Brickenden, who are 95 and 94, respectively, decided they didn’t want to wait any longer for death to arrive. They’d been married for 73 years and their bodies weren’t faring so well. Shirley had a heart attack in 2016 and nearly died; she now had rheumatoid arthritis and was in constant pain. George was found passed out, unconscious, on his birthday and his heart was also failing.

Under Canadian law, both of them qualify for what’s known as physician-assisted death. They’re older than 18, Canadian citizens, mentally competent, suffering from a “serious and incurable disease, illness or disability,” and in an “‘advanced state of irreversible decline,’ with enduring and intolerable suffering.” Furthermore, there was no coercion involved. They checked off all the boxes.

And both of them decided to end their lives together, in peace, at the same time last week.

Shortly before 7 p.m., Mrs. Brickenden turned to her husband. “Are you ready?

“Ready when you are,” he replied.

They walked into their bedroom and lay down together, holding hands. The two doctors, one for each patient, inserted intravenous lines into their arms.

Angela rubbed her mom’s feet. [Pamela] rubbed her dad’s. “They smiled, they looked at each other,” Pamela said. Then Mr. Brickenden looked at his children, standing at the end of the bed.

“I love you all,” he said.

This is exactly why the law was passed. Forcing people to live in pain is a form of torture. The Brickendens were able to get their lives in order, say goodbye one last time to their children, and end life hand in hand with the person they love most. If you were to imagine your own perfect death, it would probably look something like that.

And yet there are many religious groups that oppose letting people make that decision because it’s thwarting God’s plan for their lives. They’re so “pro-life,” they would rather see people suffer than die on their own terms. In some cases, like when a dying patient ends up at a Catholic hospital that doesn’t allow the procedure, the result is even more cruelty.

In Canada, however, this is now a legal procedure with sensible hurdles in place to prevent people from abusing it. It was made for situations like these. There may be certain situations where the moral thing to do isn’t always obvious, but this isn’t one of them.

Their mutual obituary is really incredible:

As age and overwhelming infirmities overtook them, on a beautiful spring day, after 73 years of marriage, they toasted each other with family and good champagne, held hands and left this life gently and together, on their own terms. This was their final act of love, hoping their act will pave the way for others who are suffering. They were fully at peace with this decision and had the support of their four devoted children who have always known this was how they wanted it to be when the time came. We are all forever grateful for the compassionate assistance of Dying with Dignity. They have blessed this earth together for 73 years and it’s time for them to bless the stars.

Instead of flowers, they asked for supporters to make donations to Dying with Dignity.

In the United States, death with dignity is only legal in six states and Washington, D.C. That leaves a lot of places where people who are ready to end life are forced to prolong it against their will. That needs to change.

Complete Article HERE!

The way we die will be considered unthinkable 50 years from now

How we treat dying people needs to change.

By

Fifty years ago, a physician was admitted to the hospital with stomach cancer. He wrote down in his own medical chart that he did not want CPR or to be connected to a breathing machine. His wishes were disregarded — he underwent CPR numerous times and was connected to a breathing machine until he died. Back then, not only were people treated in ways they did not want, many patients were also arbitrarily denied potentially lifesaving therapies.

Doctors decided who deserved to live or not: In one New York hospital, doctors put purple stickers on the charts of patients they determined would not receive CPR or other similar measures without the patients’ or their families’ knowledge. Decisions about life and death were subjective and opaque.

End of life care has considerably improved since then. Patient preferences now help direct physicians and nurses about what type of care they would want to receive. But 50 years into the future, we will look back on today and conclude that medicine was sorely lacking when it came to how we handle death.

Many in medicine, as well as patients and caregivers, continue to equate more procedures, more chemotherapy, and more intensive care with better care. Studies in patients with cancer and heart disease, the two greatest killers of mankind, show that patients receiving palliative care, which is an approach that focuses on quality rather than quantity of life, can actually live longer. While the goal of palliative care is to help people with a serious illness live as well as possible — physically, emotionally and spiritually — rather than as long as possible, some people receiving palliative care might also live longer since they avoid the complications associated with procedures, medications, and hospitalization

In addition, while medical advances have moved forward at blinding pace, the ethical discourse surrounding many technologies has not kept up. Take, for example, cardiac devices such as pacemakers and mechanical pumps that can be placed in the heart. Many patients with terminal illnesses who want to deactivate these devices find resistance from the health system, since some continue to equate deactivating them with euthanasia. We need to continue to make sure that even as technological advances blossom, patients remain at the center, and physicians continue to honor their wishes.

And while the palliative care specialty has greatly improved end-of-life care, too often, palliative care has been used as a way to avoid the culture change needed by all medical specialties to better handle death. Despite its many benefits, many patients and physicians are scared of “palliative care” because of its strong association with the end of life. Some have been compelled to change the title of their practices to “supportive care.” To many patients, the very name “palliative” implies that they will be abandoned, making them very reluctant to accept their services. The fact is that palliative care can, and should, be delivered to patients with serious illness alongside conventional care.

But the issues go beyond the name — one recent study showed that palliative care-led meetings with families of patients in intensive care units led to an increase in post-traumatic stress disorder symptoms among family members. Palliative care specialists are often consulted in tense situations when patients are critically ill, and they often have no prior relationship with patients or their families, who might be unprepared to have serious discussions with them. That’s why most of these difficult conversations should be delivered by the doctors and surgeons primarily responsible for treating the patients. One study estimated that by 2030, the ratio between palliative care specialists and eligible patients will be 1 to 26,000. Palliative care specialists cannot be entirely responsible for end-of-life care by themselves.

To emerge on the right side of history, the entire culture of medicine needs to be turned around. End-of-life care is not just palliative care’s business. It is everyone’s business, from emergency room doctors to primary care physicians. Physicians need to abandon outdated ideas that their role as healers is incompatible with helping patients die comfortably and on their own terms. Helping patients die well is as important as helping them live to the fullest.

Complete Article HERE!

B.C. man throws party as he undergoes medically-assisted death

‘The one thing that I don’t feel is loss,’ says widow

Would you help your good friend die?

“Paddleton” is a road movie with a heavy destination

This Ray Romano and Mark Duplass drama, currently on Netflix, explores how to help someone have a dignified death

By Mary Elizabeth Williams

I don’t know what your definition of a true friend is, but mine would definitely include “willing to help me die.”

The Netflix feature “Paddleton” is a laconic road movie about the relationship between the terminally ill Michael (Mark Duplass) and Andy (a restrained, terrific Ray Romano), his upstairs neighbor and best friend. Not much happens. Except life and death. Michael has the good fortune to have metastatic cancer in California, which means he can exercise the state’s right to die option. “I don’t want to do it alone, and I was hoping,” he tells Andy as they casually nibble cashews one afternoon. “You would help me out.”

The concept of how to have a decent death has provided plenty of fictional inspiration over the years. Sixteen years ago, Ryan Murphy’s “Nip/Tuck” did a haunting arc about a woman with late stage breast cancer enlisting her lover, a doctor, to assist her in making a peaceful exit. The Oscar-winning 2012 “Amour” similarly explored assisted death as an act of love. And just two years ago, “Grace and Frankie” introduced Babe, a free-spirited pal of the girls who asks for help planning a blow-out farewell party — and a glitch-free ending for her life. Estelle Parsons was lauded for her guest role, but not everyone was a fan. One ethics blog subtly described the episode as “Grace and Frankie kill their friend.”

California’s End of Life Option Act came about in no small part thanks to the legacy of Brittany Maynard, a 29 year-old Anaheim woman who spent her final months advocating to die with as much agency as possible before her brain cancer took over. She died in Oregon in 2015, surrounded by family and loved ones but far from home, because she needed to be in a state that would provide the appropriate environment. Physician assisted death is currently legal in seven states and the District of Columbia, though it continues to face numerous legal challenges.

But “Paddleton” isn’t a right to die movie. There is no courtroom battle to be fought, nor any secretive pact to be made. When Andy initially goes through the routine dance of assuring Michael that he can’t give up because “miracles happen,” Michael counters, “They already gave me the prescription.” Andy grapples with his assigned role a moment, then stoically tells him, “OK.”

The men take a leisurely six-hour drive to one of the few pharmacies in the state that will fill the prescription. They bicker and drink and have loose, random and often very funny conversations. They return home and face the increasingly imminent fact that one of them will not be there much longer.

“Paddleton” (named for one of the men’s made-up games) was co-written and co-stars Mark Duplass, so it comes as no surprise it has a certain mumblecore je ne sais quoi. Scenes stretch out almost aimlessly. The repetitive routines of two schlubby, not very dynamic individuals play out in real time. There are no noble speeches. Yet within the film is a resonant meditation on the uniquely bewildering experience of imminent grief. “I’m the dying guy!” Michael yells to Andy at one point late in the story. “I’m the other guy!” Andy retorts, helplessly, heartbroken.

I’ve spent a lot of time the last several years being the other guy. I’ve sat with friends shriveling in their hospital beds. I’ve attended family funerals other relatives wouldn’t. I watched “Paddleton” a few hours before learning of the sudden death of one of my daughter’s oldest friends. And all I’ve ever really learned from all of it is that whether you’re prepared for it or not, the loss of someone you love will hit you like a baseball bat, and keep hitting you for longer than you ever thought possible.

The men in “Paddleton” are overgrown kids who like puzzles and pizza. Yet there are few tasks in life that demand as much delicacy and grit as facing death, and that task they manage with exemplary skill. As they sit together on Michael’s floor, preparing a final cocktail, Andy deadpans, “I don’t even know if you had to buy this particular pill. A hundred of anything would . . . you know.” He is sincere and reassuring and not somber. And when he later goes alone into the kitchen to mix the drink, Andy adeptly performs the chore, pausing only briefly to rip off a paper towel to dab his eyes.

I aspire to die someday with dignity, though I’m not currently making a fantastic show of living with it. Neither are any of the characters of “Paddleton.” They are — even the peripheral ones — awkward and strange and pretty weird. Maybe most of us are. And as much as we deserve a death with dignity, we long for one with empathy, shared with a friend who’ll hold our hand as we leave, and miss us when we’re gone.

Complete Article HERE!

How To Grieve When A Loved One Chooses To Die

By Chloe Gray

My great grandma, or Mia, as we knew her, was 100 when she decided she was ready to die. I found this out through a nonchalant conversation with my granny, her daughter, just after Christmas. She was eating a bowl of porridge at the breakfast bar, and said: “Mia wants to go, and that’s legal in Canada.”

Was I shocked? Not really. Although I didn’t actually know that Canada, where she had lived all her life, offered medically assisted dying (MAiD), my family are the type to take things into our own hands.

It’s a weird thing, euthanasia. It’s something you’re taught about in RE lessons at school, debating whether we have a right to ‘play God’. It’s something I agreed with as a faraway idea that I’d never have to consider. Something I thought was good in theory but hadn’t ever put any serious thought into the practice.

When I learned about Mia, I agreed with it still. Everyone I told did too, commenting on how brave her decision was and how amazing it was that she had this ‘opportunity’. They may have been thinking about the procedure itself rather than offering support but that was okay, because this was, overall, A Good Thing.

Meanwhile, with my family, talk swiftly turned to logistics. Timetables detailing who would be where and when were emailed around and the bank split Mia’s estate equally, with cheques ready to be collected by her children on the ride home from the facility. It helped the Canadian side of the family to deal with it Monica Geller-style, working pragmatically through the practical elements of her life.

“We’re more open to things that are predictable,” says Dr Anna Janssen, a psychologist specialising in palliative care. “There’s something safer about it, and that means we can be more flexible in our thinking and more open with ourselves and each other.”

But while they were handling the logistical side, it became very clear that we needed to introduce this flexibility into the emotional side of things, too.

The ‘five stages of grief’ ends with ‘acceptance’. The problem here was that for Mia to go with our blessing, we needed to accept her death before she actually died. That’s an unchartered process; grieving while someone is still alive and well(ish) feels weird. My auntie Penny summarised it perfectly, saying she felt she was going through grief sideways, like a breech birth.

Feeling emotion with a deadline meant we had to sprint through the confusion, the sadness, the relief of it all. If we had been Monica about the logistics, we Chandler-ed around the feelings part somewhat chaotically. But we still all felt weirdly…lucky? “With assisted dying, everyone involved has choice in the death,” explains Judy Tatelbaum, author of The Courage to Grieve. “That makes a great difference. Anticipatory grief is very healthy.”

But I was worried about what the minutes and days after she died would bring, seeing as we had already ‘grieved’. “Maybe the grief afterwards is easier, as some feelings have happened already,” said Dr Janssen. “But eventually there will be something new, because the context has changed, and you can’t feel it until the person has actually died.”

And so the 9th of January came. I asked not to know the exact time she was meeting her doctor, because what do you do in the minutes that someone you love is dying? In the most extreme version of the Schrödinger’s cat experiment, I went into a meeting, curious about whether she’d still be alive when I came out. She wasn’t. But there was an email telling the whole story, including how she had greeted the doctor by asking if he was the nice man who was going to help her.

Yes, my experience introduced a new closeness to my family. But it highlighted a flaw in the current MAiD plan. The message from the guidelines, the ethical debates and the psychologists I’ve spoken to is that assisted dying should be about having autonomy. It should make it easier, because you plan and prepare for the place, time, aftermath and even the feelings. But MAiD is such new territory that there are the same unknowns as with ‘regular’ dying.

Up until now, humans have only ever died after suffering through old age or illness or suddenly and shockingly in an accident. Those five stages of grief have been based on these same experiences over thousands of years. Now, suddenly, we’ve introduced a model where death can be scheduled into our diaries, and we can’t just apply the same rules. There are no history or self-help books to teach us how to navigate a brand-new type of grief that brings up a totally different, sporadic, rushed and uncertain feeling.

While there are articles and research papers discussing ethical, religious and legal boundaries, all the conversations have forgotten the people, families and feelings. And maybe that’s because, as Dr Janssen pointed out to me, it’s easier to discuss facts and figures than it is to discuss emotions.

For my family, MAiD was the first time we all properly discussed dying. Perhaps this is the taboo-breaking policy the world needs? You can’t send out a ‘save the date’ without telling people what for, after all. But to stop the turbulence, there’s still a grief taboo that needs to be broken. “We need to talk about the psychology of death and grief, but also the psychology of living. We talked about the death, but not about how we’re then meant to live well,” said Penny.

For families going through MAiD this year, in five years, or further in the future, when it could be a global policy, the system will benefit if we open up. “At the moment we don’t talk about it enough to know whether that [five stages] model requires more thought,” agrees Dr Janssen. “In my academic brain, I’m thinking we need to ask what MAiD means for people, but really, we’ll simply hear more if we take the time.”

My granny has since told me not to be shocked if she asks for MAiD. Is that a conversation she would have had with me if it wasn’t for Mia taking the plunge? Probably not. And while I haven’t yet applied my newfound skill for discussing death with anyone else, I’ll no longer hold back – especially when talking about my own.

Complete Article HERE!

Palliative-care doctor left wondering ‘what if?’ after patient takes his own life

Dr. Susan MacDonald reflects on ‘Leo’ and whether she should have told him about assisted death

Dr. Susan MacDonald, a palliative care doctor in St. John’s, wonders if more could have been done for her patient ‘Leo.’

By Ariana Kelland

Susan MacDonald can’t quite pick one reason why Leo sticks with her, pushing her to put pen to paper to tell the story of her patient, and how she feels she failed him.

Asked what sets Leo — a pseudonym — apart from the rest, the palliative-care doctor shakes her head and sets her gaze away, “About Leo … I think, for one, I really liked him. I just really liked him.”

The second fact, MacDonald said, is that his death — suicide by taking his own opioids for insufferable pain — was not his only option.

Medically assisted death would have allowed Leo to die without having health-care professionals standing over him in a fruitless attempt at reversing his overdose, she said.

“He was such an intensely private person and his death was so public, and it didn’t need to be that way,” MacDonald said. “There were options. It just really struck me and made me think.”

MacDonald, an associate professor of medicine and family medicine at Memorial University of Newfoundland, reflected on her patient and what she could have done differently, in an article in the Canadian Medical Association Journal, titled Leo Died The Other Day.

The patient died within the last couple of years, MacDonald said, unable to comment further due to physician–patient confidentially. 

To raise — or not to raise — the option of assisted dying

For five months, she and Leo worked hard to control his intense nerve pain. But Leo’s death was inevitable. He had cancer, and by MacDonald’s estimation, had only weeks — maybe months — to live. 

Whether it was the physical pain that became too unbearable or the emotional struggle of his impending death, MacDonald doesn’t know why he took his own life. 

“It was a very distressing clinical case for me because I felt, at the end of the day, I hadn’t done the best I could for this particular patient,” MacDonald said.

“It was a reflective exercise for me to look back and say, ‘What could I have done better? Where are the problems? And what do we need to do about it?'”

MacDonald said she never raised medically assisted death as an option for Leo. Neither did he. But she wonders if some patients want to bring it up but can’t. 

Medically assisted death in Canada is legal. However, MacDonald said, there are no strict guidelines on how a doctor should broach the topic with a patient.

Changing the way she does things

Until Leo’s death, MacDonald would wait for the patient to bring it up, but the manner in which he died has her pausing for second thought. 

“There may be people like Leo, who could avail of that option if they knew about it or if it was offered to them,” she said.

“On the other hand, you have the potential to do harm by raising that question,” she said, adding doctors run the risk of offending patients by even mentioning assisted dying as a option.

Medically assisted death is legal in Canada. However, there are no strict rules guiding how physicians should broach the topic with patients.

“I’ve been doing this for 25 years now, and I still haven’t figured out always the right thing to say and the right thing to do for people.”

MacDonald hasn’t gotten many more inquires about medically assisted death since it was legalized, she said. “Not nearly as many as you’d think.”

Now, as she continues caring for those whose deaths are inescapable, she has Leo to think about.

Complete Article HERE!

A Difficult Conversation

by Cristian Cano

Where do you see yourself in five years? Ten? Twenty? It’s not an unusual question to hear, though answering it is never easy.

But what if you knew you weren’t going to live that long? What if you knew your death was coming in a matter of months — or even sooner?

End-of-life care is, generally speaking, the care that someone receives after being diagnosed with a terminal illness, such as cancer or Alzheimer’s disease. While some diseases may be treatable and even curable, terminal diseases are typically those for which there are no cures, and decisions regarding end-of-life care prioritize making the most of an individual’s time left.

Max Vergo, a palliative care doctor and assistant professor at the Geisel School of Medicine, explained that end-of-life care is highly individualized, and not all treatments are appropriate for a patient’s wishes. For example, some patients prioritize extending their lifespans as much as possible, perhaps to be able to attend a special event like someone’s graduation. But opting to live longer might come at the cost of a lesser quality of life, such as being bound to a hospital bed.

Other patients, however, would rather prioritize different treatments that would allow them to maintain a certain quality of life — say, being able to walk freely or live at home — even if that means their death may arrive sooner.

“For some people, [prioritizing living longer] feels like the quality would be so poor, it wouldn’t really be valuable time,” Vergo said. “Knowing that their time is limited anyway, they may choose a [different] path. … At least they’ll have some control over what the quality [of life] looks like.”

End-of-life decisions, while incredibly individual, often involve an entire of team of medical professionals. Kathryn Kirkland, the director of palliative care at Dartmouth-Hitchcock Medical Center and a professor at Geisel, spoke about how her patients interact with an interdisciplinary team of doctors and nurses, social workers, chaplains, creative writing specialists, artists and other volunteers, all of whom work to take care of “the whole person.”

Kirkland also explained how her team works with patients’ families and loved ones as well. For example, patients with terminal issues often experience feeling like a burden to their families. In those cases, patients and their families go through counseling to discuss those feelings and identify ways to alleviate them.

“Taking care of somebody who is very sick is a hard thing to do sometimes,” Kirkland said. “Most family members end up reassuring the person with [the] illness that they want to help, that the patient is not being a burden, but unless you have those conversations, it can be hard to influence people’s decision making.”

Among the many options that patients sometimes have, one of the most controversial is physician-assisted dying, also known as physician-assisted suicide. Ann Bumpus, who taught the course Philosophy 5, “Philosophy and Medicine” last fall, explained how physician-assisted suicide is different from euthanasia because patients take a drug that they know will cause their deaths, whereas euthanasia is when a physician administers the drug, usually via an injection.

Euthanasia is illegal in all 50 states, but physician-assisted suicide is legal in a handful of states. It became legal for Vermont residents in 2013 with Act 39, the Vermont Patient Choice and Control at the End of Life Act; physician-assisted suicide is still illegal in New Hampshire.

Cristine Maloney is the hospice medical director for Visiting Nurse and Hospice for Vermont and New Hampshire, meaning that she sees patients in both states. She noted that, given the difference between the law between Vermont and New Hampshire, she’s always cognizant of which side of the border she’s on when working with patients.

Maloney noted that when discussing the option with patients in Vermont, she tried to understand why they are considering it in the first place. Many patients are unfamiliar with the process, which requires two different physicians — one consulting and one prescribing — and a waiting period of at least two and a half weeks. Another misconception is that patients receive a shot or intravenons treatment to end their life, when in reality, it’s a powder that dissolves in water that patients must be able to take by themselves.

When asked about the emotional aspect of physician-assisted dying, Maloney said that many of her discussions with patients revolve around their desire to have control over this aspect of their life, as well as the expected nervousness about what dying is like. She noted that family members, and even the doctors who prescribe the medicine, often feel intense emotions too.

“After a patient takes medication like this, they die, but their caregivers or family members live with that experience, and so they often have also had some strong opinions … or feel nervous or concerned about it as a family member,” Maloney said. “I think the same is true for the [physicians]. Most of them are doing this for the first time, and it’s very different than anything a physician usually does. We’re usually doing the opposite, giving folks medications to not end their lives.”

How does physician-assisted dying enter into the broader topic of suicide as a whole? The name of the process itself is controversial. While the terms “physician-assisted dying” and “physician-assisted suicide” seem interchangeable in everyday discourse, Vergo expressed a strong preference toward the former.

“In our profession, [we don’t use] ‘suicide’ because these are rational decisions that people make,” Vergo said.

Bumpus spoke about how some of the arguments against physician-assisted dying include the possibility that it leads to a rise in suicide rates in young people and terminally ill people, acknowledging that there is not yet good evidence to prove or disprove the concern. She also touched upon the use of the word “suicide” instead of “dying.”

“Calling it suicide emphasizes the similarity, and the similarity is just that, technically, the person takes their own life,” Bumpus said. “I think using the word suicide for both overstates the similarities. I’m not saying that suicide is always irrational or always wrong, but I think these cases are really special end-of-life cases and ought to be looked at separately.”

Another compelling concern with physician-assisted suicide that Bumpus brought up was that vulnerable populations, including individuals without good health insurance or a strong understanding of the medical system, may be pressured — however subtly — to choose physician-assisted dying without exploring other options as much as they would have otherwise. While we, as a society, often believe that more options leads to more freedom, that’s not always the case, and offering physician-assisted suicide could end with patients feeling obligated to take it.

So, what can students do? For students who are interested in the medical field and may one day have end-of-life care conversations with patients and families, Vergo spoke about how much of his teaching work involves perspective training. It’s essential for physicians to understand how, given the same information, different people can have different perspectives, and none of them are wrong. He also acknowledged that having these conversations can be emotionally taxing for health care professionals as well, and a tried-and-true “scaffold” to fall back on during these conversations can help.

Vergo emphasized that no one is born having mastered these skills, but instead they are gained gradually with practice and training.

“It’s just like in sports,” Vergo said. “You don’t just become an awesome soccer player on your own. You usually have a team and then a coach that helps you figure out how you can take the next step in your skills. We do a lot of coaching.”

For students who aren’t necessarily interested in the medical field, these topics can still be important to think about, especially since many patients in end-of-life care couldn’t have anticipated their current situations. Kirkland, who has taken care of students who have gotten into car crashes or skiing accidents, has even seen friends enter positions where they had to make important decisions. While these topics aren’t always easy to talk about, having conversations early about what you value most in life is a valuable investment.

“Even though students don’t really want to think about how they’re mortal like everyone else, it is probably worthwhile to think about who you would want making decisions for you if you couldn’t make them for yourself,” Kirkland said. “Having conversations with families is important to do.”

Complete Article HERE!