‘It’s a right over our own bodies’

— A remarkable documentary on medically assisted death

‘Getting to bring him home and put his bed right in the middle of the living room and then surround him with love was the greatest gift.’ Ondi Timoner and Eli Timoner in Last Flight Home.

Film-maker Ondi Timoner captures her family in a transitional phase, approaching death head-on in Last Flight Home, after her father requests the right to die

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In late January 2021, Eli Timoner was hospitalized with difficulty breathing. It had been a long, slow physical decline. The 92-year-old entrepreneur and father of three had been paralyzed for 40 years after a stroke when he was 53; during the isolation of Covid, his mobility worsened, putting a great strain on his wife of 55 years, Elissa. Now, due to chronic obstructive pulmonary disease and congestive heart failure, he was permanently bedridden. Reached by phone in the hospital by his daughter, the documentary film-maker Ondi Timoner, Eli reports that he feels finished, is “just waiting to die”.

“Waiting to die?! I thought you were waiting to see me today,” a shocked Ondi responds. But Eli is adamant: “If they could give me goodbye powder, I’d take it.”

Last Flight Home, Ondi’s remarkable documentary on her father’s final days and medically assisted death, begins from this point of certainty. To be bedridden meant a transfer to a full-time care facility, which was a non-starter for Eli. He was in constant pain, tired, done. Cut to, less than five minutes into the film: a Zoom call between hospital-bound Eli, Elissa, Ondi and her siblings Rachel and David, discussing the possibility of medically assisted suicide. The conversation is the film in miniature: at once profound and practical, wry and devastating. A rare example of how to approach death collectively. How to do it legally, according to California’s End of Life Option Act. (There are 10 states that allow for medical aid in dying, in addition to Washington DC.) How to do it spiritually, as a family losing their patriarch, best friend, husband, father, grandfather. How to answer your loved one when, faced with terminal illness, they say: “I want it to end. Right away.”

The Timoners were supportive of Eli’s decision for medically assisted death, though confused on how to enact it, let alone live it for the state-mandated 15-day waiting period between evaluation by a physician and the administration of the lethal prescription. “I had no idea. It was like walking on the moon in my parents’ living room,” Ondi told the Guardian.

Last Flight Home captures a transitional phase – tasks to do, words to say, love to be honored and consecrated. There are final Zoom farewells, sentimental and largely upbeat, peppered with anecdotes from Eli’s time as founder and CEO of Air Florida in the 1970s and his lifetime as a friend. A follow-up appointment via Facetime with a different physician to confirm, in compliance with California law, the first doctor’s approval of the prescription. A meeting with a death doula, to whom Eli expressed his fear of being placed in a coffin while still alive. Practice drinking a smoothie with a straw, to ensure that Eli can, again in compliance with state law, take the medicine by his own hand. Conversations about life, about feelings of shame and gratitude, about funeral plans, old photos, monthly utility bills.

“There’s an unreality to it all,” Elissa, mostly camped on the living room couch, says in the film. “We’re just putting one foot in front of the other.”

The surreality, a mixture of familial candor and delicateness, was “a position that a lot of people find themselves in, and families find themselves in, because our culture doesn’t really set us up – we don’t talk about death,” Ondi said. “We’re really, really scared of it.”

Before her father’s decision, Ondi hadn’t really faced it, either. “I was panicking” at the beginning, she said, initially unaware of California’s End of Life Option Act. She began recording her father’s phone calls from the hospital. “I knew it was going to be imminent. I was just horrified at the concept that he would die as degraded as he felt. And he just felt like there was nothing for him here any more, and that no one cared besides the four of us, and that his life had really added up to a failure”, in large part due to material losses as a result of his disability. (Eli Timoner was forced out of his company following his stroke before the passage of the Americans With Disabilities Act in 1990.)

“Getting to bring him home and put his bed right in the middle of the living room and then surround him with love was the greatest gift,” Ondi said. “I don’t know where I’d be today if I didn’t have that chance. He was my best friend, my pal, and I was devastated, absolutely devastated.”

The cameras started rolling soon after, first as an archive rather than as a film. “I do a lot of recording, and my family is used to that, so no one knew that I was making a film, including me,” said Ondi. “I was desperate to bottle him up somehow.”

Filming such sensitive, raw moments was a family agreement. Eli, ever supportive of Ondi’s work, was on board with any future project to be made from the cameras installed throughout his living room. (Ondi also edited the film.) So were Elissa and David. Rachel, who has supported many people and their loved ones at the end of life as a senior rabbi with Congregation Beth Elohim in Brooklyn, was more wary.

Clockwise from top left: Elissa, Eli, Rachel, Ondi and David Timoner in an archival image taken at Boeing headquarters in Seattle on 30 October 1979.
Clockwise from top left: Elissa, Eli, Rachel, Ondi and David Timoner in an archival image taken at Boeing headquarters in Seattle on 30 October 1979.

“It felt so private,” she said. “Even though I don’t shy away from talking about death and having these conversations, it did feel like it was really just for us and not for anybody else’s eyes.

“Part of what’s important about the dying process is that it be unmediated,” she added. “That it could be just private.” She came around slowly first to the filming, then to its public distribution. Her father was supportive, first of all, as was her mother, who found comfort in the footage after Eli’s death, watching it nightly for months. “If my mother is getting solace from this, then that’s by far the most important thing,” said Rachel. And then there was the effect on audiences. Viewers of the film left the theater “in awe about life, about love, about that if we are courageous enough to turn toward death, we turn toward life,” she said. “That to me feels like a really holy purpose. And I relinquished any concerns I had.”

Plus, she said, it could help influence other states to adopt compassionate choice laws. The film is adamantly for compassionate choice, which is still working through the New York legislature – “If you’re terminally ill, you should have the right to terminate your life if you don’t want to suffer any more. It’s a right over our own bodies,” said Ondi.

But the film does not shy away from discomfort with the process as it currently exists. The administration of the medicine is an ordeal of choreography and solemnity, trying to balance saying the last goodbye with specific, critical instructions; the final mixture must be consumed in full in under two minutes. That countdown, in which Eli, held by children and grandchildren, struggles to swallow the bitter poison against the clock and says “I can’t” is edited down but still feels 10 minutes long, a stressful race against time.

“It felt like an obstacle course,” said Ondi. “There’s got to be a more humane way to do this … We were surrounding him and it was going to be this really peaceful journey out, and to see him saying ‘I can’t stand it’” – referring to the taste of the final medicine – “that that was his last experience on earth was really sad to me.”

But in the end, peace. Eli died shortly after finishing the medicine, on 3 March 2021. Until then, he comes across as compassionate, generous, funny. “This film is exactly who he was,” said Rachel. “He just paid attention to everybody else, and rooted everybody else on,” said Ondi. “And I just aspire to have one-tenth of that generosity and grace.”

A final act of generosity: the willingness to speak openly about death, to offer a model of how one could embrace the end. “I hope people get inspired to face the fact that they and everyone they love is going to die,” said Rachel of the film. “And if they have the courage to talk about it, and to plan for it a little bit, that they have a real chance to have a beautiful, good death. And that that is a way for them to seize their lives. It is a way for them to embrace their living.”

  • Last Flight Home is released in US cinemas on 7 October and UK cinemas on 25 November

Complete Article HERE!

Why don’t more people of color receive end-of-life care?

People from historically underserved communities don’t just rarely utilize medical aid in dying; they also are less likely to utilize hospice and other palliative care options.

Brandi Alexander is the National Director of Community Engagement for Compassion & Choices.

by Brandi Alexander

Since New Jersey’s “Medical Aid in Dying for the Terminally Ill Act” took effect three years ago, not one Black, Hispanic, Native Hawaiian, Pacific Islander, or Native American state resident has used the law to gently end their suffering.

The question is: Why?

According to state Health Department reports, 89 of the 95 New Jerseyans who have used the law were white (94%), four were Asian, and two were of an unspecified single race. This racial disparity is similar to what’s seen in annual reports in eight of the 10 other jurisdictions that authorize medical aid in dying.

As to why white people are more likely to use this option, some suggest it is because white people mostly are the ones who want it. But that is not true.

A recent national survey showed that 62% of Black voters, 70% of Hispanic/Latino voters, and 65% of voters from all other ethnic groups surveyed would want the option of medical aid in dying if they became terminally ill, compared with 67% of white voters.

Reducing New Jersey’s 15-day waiting period, or waiving it when necessary, would improve access to medical aid in dying statewide. Other states such as California, New Mexico, and Oregon have reduced their waiting period; Oregon also waived its residency requirement. New Jersey should also authorize the state’s share of Medicaid to pay for medical aid in dying, as California, Hawai’i, and Oregon do. After all, New Jersey’s Medicaid program covers hospice care; it also should cover the end-of-life care that patients want, including medical aid in dying.

But these revisions alone would not be enough to reduce the racial gap.

Everyone deserves equal access to all types of end-of-life care.

The reality is people from historically underserved communities don’t just rarely utilize medical aid in dying; they also are less likely to utilize hospice and other palliative care options.

As anyone whose loved one has entered hospice can tell you, it is an invaluable resource, which gives peace and comfort to the dying person, as well as to loved ones.

There are likely a variety of reasons why people of color are not getting this care at the end of their lives. They may tend to prefer aggressive treatments, and may not be offered palliative options, due to institutional racism, cultural and language barriers, lack of access, and economic and insurance hurdles. These facts have been documented by researchers, who found that people of color with end-stage kidney disease were less likely to receive referrals for palliative care than white patients. Other reasons may include mistrust of the health-care system, lack of in-home resources, influences of cultural and religious beliefs, lack of knowledge about available services, and misconceptions about hospice and palliative care.

Indeed, the racial disparities in use of hospice and end-of-life care are consistent with a broad range of racial disparities in the use of health care, as well as health outcomes.

Everyone deserves equal access to all types of end-of-life care. So how do we make that happen?

It will take time, cultural and religious sensitivity (e.g., understanding the importance and impact of faith, spirituality, and culture on end-of-life care decisions in communities of color), and trusted voices to empower and inform diverse communities about the quality-of-life benefits of hospice and palliative care.

Heath-care professionals should initiate conversations with all of their patients, no matter their background, about the importance of discussing their end-of-life care options with their doctors and loved ones, documenting their preferences in writing by completing an advance directive, and appointing a health-care proxy to carry them out if they are unable to speak for themselves. This information can be a source of enormous comfort for terminally ill patients and their loved ones.

Just as we fight for everyone to have equal access to what options people want in life, so too should we fight for equal access to options they want when it comes to death.

Complete Article HERE!

Assisted Death

Official data shows that the number of people dying with assistance has been rising much faster in Canada  over  the  past three years than in other countries where assisted suicide or euthanasia are legal.

By David Manners

The Netherlands and Belgium which, like Canada, allow both have seen numbers rise more slowly. Assisted dying has been legal there since the early 2000s, however, while Canada legalized it in 2015 and has considered those who p have a disability but are not terminally ill for assisted dying since early 2021.

In 2021, assisted dying accounted for 3.3 percent of all deaths in Canada.

The United States also saw a  faster rise in those dying by self-administered physician-assisted suicide over the past four years (euthanasia is not legal in the U.S.). This was also aided by the fact that four states – New Jersey, Hawaii, Maine and New Mexico – legalized it between 2018 and 2021, while two more populous ones, Colorado and California, started the practice in 2016.

Switzerland is another practitioner of physician-assisted suicide, but not euthanasia. 1,196 people died with assistance in the country in 2019, the latest year on record. Assisted dying is also legal or will become so soon in Luxembourg, Colombia, Spain, Austria, New Zealand and most Australian states.

The practice of both self-administered medication-assisted suicide and euthanasia – where a doctor administered deadly drugs upon request – have been legal in the Netherlands, Belgium and Luxembourg since the 2000s and has been practiced in Switzerland, which only allows the former, since the 1980s.

Colombia legalized euthanasia in 2015 and assisted suicide this year and both types also became legal in Canada in 2015.

In the past two years, Spain, Austria and New Zealand have made euthanasia and assisted suicide legal.

Similar laws also came into effect in several Australian states, starting with Victoria in 2019 and Western Australia in 2021. The remaining states in the country except for the Northern Territory will roll out these laws throughout the rest of 2022 and into 2023.

In the United States, the first states to legalize assisted suicide were Oregon in 1994, Washington in 2008, Montana in 2009 (via a state Supreme Court decision) and Vermont in 2013. The number of states who adopted the practice has risen recently, when it was legalized in California and Colorado in 2016, Hawaii, New Jersey and Maine in 2019 and New Mexico in 2021. Active euthanasia remains illegal in the country.

In Italy and Germany, national parliaments are currently grappling with legislating assisted dying after high court cases were decided in favor of proponents of the practice.

While Germany has been refusing to dispense deadly drugs despite the high court decision, the first person in Italy died with the help of self-administered medication in June.

Complete Article HERE!

Supporting patient choice at end of life

By Norman Nasser, Nadia J. Pruett, Jason Sawyer and Amy E. Nolen

Monika was a 77-year-old mother of 2 and grandmother of 4 who lived for many years with mental and physical health challenges. She had bipolar disorder, which was well managed by a psychiatrist in her final years of life.

Monika was a warm and loving person who cared deeply for her family, friends, caregivers and dog, Trixie. She loved music and gardening, and enjoyed many foods, especially sweets.

In 1996, Monika had attempted suicide, which had resulted in long-term paraplegia and associated chronic health problems, including progressive and chronic lower extremity pain. She had received numerous treatments over several years, including different classes of drugs (antispasmodics, nonsteroidal anti-inflammatory drugs, tricyclic antidepressants, anticonvulsants and opioids), medical cannabis, cortisone injections, injections of botulinum toxin and consultations with physiotherapists and physiatrists. Despite this, her pain escalated until she could no longer safely remain at home because of functional impairment from pain. She presented to the emergency department and was admitted to hospital.

In hospital, medical options for pain management were ineffective at achieving an acceptable degree of pain relief or resulted in intolerable side effects. These included trials of intravenous ketamine, lidocaine and suboxone.

Monika, with the support of her children, requested medical assistance in dying (MAiD). She was found eligible for MAiD under Bill C-7, an amendment to Canada’s assisted dying legislation that was passed in March 2021 and removed the previous requirement that a person’s natural death must be reasonably foreseeable.1 Bill C-7 includes several safeguards, including a 90-day period between initial assessment for eligibility and provision of MAiD. However, if there is concern that the patient might imminently lose capacity to consent, that period can be shortened.

During her month-long hospital admission, Monika had multi-factorial delirium that her clinicians felt placed her at risk for loss of capacity to consent to MAiD, and they shortened the 90-day assessment period.

Son’s perspective

I remember my mom as being very loving and supportive when I was a child. I relied on her warmth and wonderful personality.

At times, the last 26 years have been very difficult for us; my mom’s mental health struggles and physical deterioration often made day-to-day living incredibly difficult for her. Regardless, she felt that her quality of life was better than that of many people suffering around the world. She didn’t take life for granted.

Monika’s pain became terrible and progressive. Over the last few months of her life, she called me many times a week, crying in anguish. Regardless of what was tried — yet another specialist, medication or treatment — nothing worked. I felt helpless. My sister Nadia and I were worried that she would overdose on pain medications. I couldn’t imagine her going through that alone.

My mom decided to apply for MAiD, with our full support. When she was stressed or in pain, it was challenging for her to communicate effectively, so we were worried about how she would be assessed by her health care team, given the COVID-19 restrictions.

In hospital, the palliative care team involved the acute pain service and were incredibly supportive and compassionate. We spoke almost daily, and my mind was at ease that my mom was getting the best care possible. The compassion and patience of everyone made the experience tolerable; I felt that they were advocating for her. However, the pain persisted in spite of everything that was attempted.

When the planned waiting period of 3 months was suddenly shortened to only 48 hours, I understood. Why spend time saying goodbye when that time was spent struggling in pain? Those 2 days were a blur to me. Surprisingly, my mom had a sound sleep for the first time in months. Why? Was it the partial effectiveness of the analgesics, was it the onset of delirium or was it from the calm that came with knowing that her suffering would finally end

The last few hours came and went too quickly. Nadia, my mom and I laughed together; we cried, music played and my mom sang an old German song that I had not heard in decades. I did not say “Goodbye” or “I love you” in those brief, final seconds, but our bond was as strong as ever. Her passing was so gentle. It was impossibly difficult to be there, but I still would not change anything about that day. — Norman Nasser

Daughter’s perspective

Nothing is harder than witnessing someone you love be in excruciating pain with no relief. Mom had been in pain off and on since her accident in 1996. It had become unbearable during the 8 months before the end of her life.

My brother Norm was persistent in organizing appointments with generalists and pain specialists, as well as helping her try alternative treatments, from osteopathy to hypnotism. Nothing worked for more than a few days, if at all.

I felt incredibly helpless, knowing that there was nothing I could do to relieve her pain.

Norm and I shared a sad moment when we thought that Mom would very likely take matters into her own hands and attempt suicide. She had mentioned this as a quick method to end her pain. She would undoubtedly be alone, which was an awful thought. What if she wasn’t successful and made matters worse? We did not want a suicide attempt to be an option for our mom. We made a desperate call to Mom’s family physician, who recommended an admission to hospital for intensive management of her pain.

When Mom made the decision to pursue MAiD, I thought that the assessment period of about 3 months would give us enough time to say goodbye, reminisce and spend time together; time that we would cherish. When the assessment period was drastically shortened, I was thankful that the expedited process would fulfill Mom’s wishes, but it was a shock to know that she would be gone so soon. Time could no longer be taken for granted. It became a privilege, and it was running out very quickly.

I was allowed to visit Mom on the day before MAiD and be there with her until the procedure was over. Mom, prone to high anxiety, was the calmest she had been in a very long time. She slept through the night, which she hadn’t done in years.

The morning of the procedure, Norm, Mom and I said our goodbyes with a Tom Jones album playing, drinking German beer and enjoying her favourite foods. I felt that I needed to put on a brave face so that I wouldn’t upset Mom. It was so hard. However, I knew that Mom was at peace with her decision, and that made me feel at peace with losing her.

The void is huge. I miss her so very much. She haunts me like she promised she would! I still talk to her and hear her voice. I am so very thankful to my brother Norm for his determination in getting her the help she needed and to the medical team for listening intently and fighting for her right to be put to rest with dignity. — Nadia Pruett

Pain management nurse practitioner’s perspective

Several times a year, my palliative care colleagues reach out for assistance with patients who have complex pain management needs. I enjoy those collaborations. Becoming part of the circle of care for Monika turned out to be a very unique experience. I was told that debilitating pain had led Monika to request MAiD. Before meeting her, different thoughts went through my mind: “Is this really the goal? If pain becomes well controlled, will Monika’s outlook change?”

When I met Monika, her suffering was readily apparent. Her posture, her expressions and the sudden spasms contorting her body underscored her descriptions of pain and suffering. Despite this, Monika chose to present herself to the world with calmness and dignity. She was a very proud woman. She was inspiring.

>Monika wanted her pain to be better managed, but what was most important to her was to maintain her mind because that was “all she had left.” I outlined some new options for pain control and we agreed on a plan. I met her son, Norm, and I remember wondering, “How does he feel about all of this?” It was apparent that Norm was fully supportive of his mother’s goals and decisions. He had been tirelessly advocating for her for so long. I sensed he was finding some peace and that her request for MAiD finally provided a clear path to what she wanted.

Although the new treatments provided Monika with some brief periods of pain control, they were short-lived. Monika reported feeling clear-headed after stopping many of her longstanding pain medications and starting new ones. I like to think this increased clarity helped everyone feel just a little bit better about Monika’s decision to receive MAiD.

I saw Monika on her last day. It was amazing to see her room filled with pictures and music. Norm and Nadia were there. The delicious smells of some of Monika’s favourite foods filled my nostrils. It was nice to feel like I was not in a hospital for a brief period. In many ways, it felt like I was at a retirement celebration; a retirement from a life well lived. A retirement on Monika’s terms. It was difficult to leave the room. Helping Monika and her family find peace on her terms was a privilege and honor. — Jason Sawyer<

Palliative care physician’s perspective

At the height of the third wave of the COVID-19 pandemic, I was asked to see a new patient admitted to hospital with chronic pain. She had requested a palliative care consult, which was unusual in the absence of a life-limiting diagnosis. And so I went to meet her.

As I stood at Monika’s bedside, she was consumed by paroxysms of pain, but in her brief periods of reprieve, she showed a wry sense of humour. On her bedside tray was a small stack of pages that listed the myriad specialists who had tried to manage her complex pain. Also unusual — at the bottom was a note: she wanted to be assessed for MAiD.

I saw Monika daily over the subsequent month. I drew on the expertise of every specialist team I could for second and third opinions about pain management. Monika gamely agreed to every therapeutic option we proposed, while at the same time, from the moment of our initial encounter, she showed great conviction in her desire to move forward with MAiD.<

Bill C-7 had been enacted in Canada just weeks earlier, expanding access to MAiD for individuals who, like Monika, do not have a reasonably foreseeable natural death. I had provided MAiD under the previous legislation, and I supported C-7 in principle. But this was new territory. Suddenly I was engaging with C-7 much more quickly than I had anticipated. More than anything, Monika wanted to alleviate suffering, but I wrestled with the idea of providing MAiD to a patient who might otherwise live for years, albeit in agony.

I proceeded slowly, with valuable input from mentors. I tried to meet Monika’s request with openness. I learned of her years of living with chronic pain and the clarity of her wishes. I noted the unwavering support of her family. I reaffirmed with experts that her wish was within the law. I came to realize that what she needed now was the support of her health care team. Soon, I was navigating this terrain with a comfort I had not anticipated.

I encountered a new challenge when Monika developed medical complications that could jeopardize her future ability to consent to MAiD. She had intermittent delirium that was caused by a variety of factors, such as changes in hospital rooms, medications and a urinary tract infection for which she declined treatment. If she became persistently confused, she would lose her ability to access MAiD. We made the decision to set a MAiD provision date for that same week, only 30 days after we had first assessed her. It was a careful balance between avoiding haste and respecting Monika’s wish, and though the decision was agonizing to the medical team and her family, it was a great relief to Monika.

Monika’s medically assisted death was a moving experience. COVID-19 visitor restrictions meant only her son and daughter could be present, but the room was filled with photos and mementos from her life. The atmosphere was far from melancholic, but was suffused with calm and Monika’s palpable relief that her wishes were to be honoured. I am grateful to have had the opportunity to learn from Monika. — Amy Nolen<

360 Cases is a new type of Practice article that highlights the interpersonal and systemic aspects of health care that are seldom discussed in other Practice articles. Each comprises a brief case summary, followed by personal reflections from 2–4 people involved in the clinical encounter. One author must be a patient, family member or caregiver; the other authors may be anyone involved in the encounter (i.e., physicians, nurses, social workers, dietitians, etc.). For more information, see https://www.cmaj.ca/submission-guidelines or contact Victoria Saigle (Victoria.saigle@cmaj.ca).

Complete Article HERE!

Health-care providers and MAID

— The reasons why some don’t offer medically assisted death

By

Medical assistance in dying (MAID) was legalized in Canada in 2016. Since then, there have been year-over-year increases in Canadians accessing a MAID death. The most recent data from 2019 to 2020 highlights a 34.2 per cent increase in Canadians accessing MAID.

Bill C-7, which passed in June 2021, changed the eligibility criteria by removing the “natural death has become reasonably foreseeable” requirement. As a result, more Canadians may qualify for MAID.

During the pandemic, 23 per cent of care providers in an international survey reported that assisted death inquiries or requests had “somewhat” or “significantly” increased. MAID and COVID-19 pressures resulted in at least one Canadian province temporarily pausing referrals for patients wishing to access MAID.

Non-participation in MAID:

Health-care providers willing to participate in patient assessment and MAID provision are essential to support Canadians who wish to access MAID. That makes it important to understand the factors that influence practitioners’ decisions to not participate in MAID.

Medical assistance in dying (MAID) was legalized in Canada in 2016. Since then, there have been year-over-year increases in Canadians accessing a MAID death. The most recent data from 2019 to 2020 highlights a 34.2 per cent increase in Canadians accessing MAID.

Bill C-7, which passed in June 2021, changed the eligibility criteria by removing the “natural death has become reasonably foreseeable” requirement. As a result, more Canadians may qualify for MAID.

During the pandemic, 23 per cent of care providers in an international survey reported that assisted death inquiries or requests had “somewhat” or “significantly” increased. MAID and COVID-19 pressures resulted in at least one Canadian province temporarily pausing referrals for patients wishing to access MAID.

Non-participation in MAID:

Health-care providers willing to participate in patient assessment and MAID provision are essential to support Canadians who wish to access MAID. That makes it important to understand the factors that influence practitioners’ decisions to not participate in MAID.

David Lametti, Minister of Justice and Attorney General of Canada, delivers a statement on Bill C-7 on Parliament Hill in Ottawa in March 2021. The bill removed the criteria of a reasonably foreseeable death from MAID eligibility.

As an end-of-life researcher and registered nurse, I investigated this question with the support of my thesis committee. That research highlighted the complex and interwoven reasons why health-care practioners may not participate in MAID.

These factors can be divided into internal and external factors, but it’s also important to recognize that there are conscience and non-conscience-based factors that influence non-participation.

Internal factors

Several personal, or internally originating, factors influenced non-participation. These included a general discomfort in caring for dying patients as well as the provider’s previous personal and work experiences related to death and dying. Also, MAID did not align with some practioners’ approaches to end-of-life care.

Other factors that influenced non-participation included practitioners’ views of their professional duty. MAID did not align with some practitioners’ faith or spiritual beliefs, and some reported they could not imagine being at peace with the decision to participate in medically assisted dying.

Health-care practitioners also considered how they were likely to respond emotionally to participating in MAID. They had concerns about the future impact of MAID participation in terms of their potential risk of post-traumatic stress disorder and burnout.

External factors

  • Health-care system factors: The health-care system influenced non-participation. This included working for an organization with an institutional conscientious objection to MAID and the uncertainty of working within a rapidly changing legal landscape in terms of MAID regulation. There were also concerns about adequate access to alternatives to MAID, such as palliative care and chronic care support at home. Some nurse practitioners reported that they did not participate in MAID because of limiting job or practice descriptions at their current employer or a lack of billing codes that would enable them to be paid for these services.
  • Community factors: Reasons for non-participation also included gauging the “community conscience,” perceiving a lack of openness in end-of-life discussions and the dominant religious beliefs of the community. Health-care practitioners were concerned about the impact of having to reduce or cancel other services in an already busy practice to make the time to provide MAID care to a single patient. They were also unsure if or how culture influenced the patient’s perception of MAID, or the patient’s perception of them as health-care practitioners if they participated or if participation would alter the community’s trust in them.
Cropped image of a person in a white coat standing behind a seated older person, holding their hand
The health-care practitioner-patient relationship influenced non-participation. A long relationship with the patient could make participating in MAID uncomfortable and challenging.
  • Practice factors: For some health-care practitioners, their decision to not participate in MAID was influenced by a lack of policy and program knowledge or skills to participate in the MAID assessment or provision. Another reasons was adequate pay for the time and overhead costs involved. Others said they lacked understanding about the optimal care model for MAID (such as whether MAID is provided by family medicine practitioners, end-of-life care practitioners or MAID teams). Others identified that MAID was outside their clinical interest and practice strengths.
  • Visibility factors: How MAID participation would be viewed by colleagues, clinic staff and patients also influenced the non-participation of health-care providers. This included fear of colleagues’ disapproval, fear that participation would harm patient relationships and their relationship with their faith community and a fear that participation would be interpreted as giving up on patients.
  • Risk factors: Health-care providers contemplated the risk to themselves, their practice and their families. Specifically, the risk associated with professional discipline if the patient or patient’s family disagreed with their assessments, the risk of colleagues making their professional lives difficult and the perceived risk of personal physical harm or violence to themselves or their families.
  • Time factors: Concerns about competing clinical demands, time-limited appointments that do not accommodate end-of-life conversations and lack of time to offer quality MAID care influenced non-participation as well. Some health-care providers did not wish to take on new practices at their current career stage (for example, close to retirement) and others noted a lack of time to take continuing education in MAID.
  • Patient’s family factors: Other factors that influenced non-participation in MAID related to the patient’s family. Health-care providers expressed concern that participation would impact the care provided to other family members and that there was a lack of support for the family before, during and after MAID. They also considered the potential challenges of inter-family conflict around the patient’s MAID choice and the impact of the MAID death on future family dynamics.
  • Patient relationship factors: Another factor was the health-care practitioner/patient relationship. A long relationship with the patient could make participating in MAID uncomfortable and challenging. Others noted that a long history with a patient would support open discussions about their reasons for not participating in MAID.

Support for health-care practitioners

My research outlines a model of non-participation in the formal MAID processes. In terms of conscience and non-conscience-based factors, it’s vital to differentiate between a conscientious objection to MAID and non-participation in MAID because health-care practitioners require different support for these.

Steps that might support health-care practitioners who are considering participating in MAID include clarifying regional models of care, which vary between provinces and territories.

Practice-focused MAID education could include not only policy and legal aspects but also pragmatic issues such as obtaining medications and administrative requirements, as well as discussions about relevant factors like communication skills and religious knowledge.

Recognizing the practice issues, time and relationship investment required to provide MAID, and developing fair remuneration policies for health-care practitioners who provide it, may support more participation in MAID.

Supporting health-care practitioners will be vital to a sustainable, healthy health-care system for Canadians.

Complete Article HERE!

Who is most likely to use medical aid in dying?

Data from each of the 5,329 patients across the US who died from medical aid in the 23 years after Oregon became the first state to legalize shows well-educated, white patients with cancer dominate the group.

“Although MAID will likely never account for more than a small portion of deaths, it is becoming more common in the states where it is legal, and it’s currently on the legislative agenda of another 14 states,” says Elissa Kozlov.

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More than 72% of patients who died with medical aid had at least some college education, more than 95% were non-Hispanic whites, and nearly 75% had cancer.

“We don’t know if these numbers reflect genuine, underlying differences in group preferences or disparities in how laws are written or services provided,” says Elissa Kozlov, an instructor at the Rutgers University School of Public Health, and lead author of the study in Journal of the American Geriatrics Society.

“But such large differences in utilization are always a red flag that demands further investigation, and if that investigation finds disparities that make it harder for some groups to access desired medical services, we need to correct them.”

“Many doctors will not participate in MAID, and many who will don’t necessarily advertise the fact.”

The sexes were relatively evenly represented—53% male, 47% female—but medical aid in dying (MAID) users naturally skewed much older than the population at large. Nearly 60% of the people who died with medical aid were between ages 65 and 84. Another 16% were 85 years old or older, while 8% were 54 years old or younger.

One major barrier to many would-be users is cost. MAID is now permitted by eight states and Washington, DC, but the federal Medicare program, which is the primary insurer of Americans 65 years old and older, doesn’t pay any costs associated with MAID.

Those costs can be considerable, Kozlov says. States that allow MAID typically require two doctors to certify the patient will die within six months. There’s also the expense of buying the medications prescribed for MAID, which are often not covered by insurance and can cost up to $3,000.

Another major barrier is finding a doctor who will provide the service.

“Many doctors will not participate in MAID, and many who will don’t necessarily advertise the fact,” Kozlov says. “You have to be well connected within a network of doctors or skilled in researching such matters, and that’s one possible explanation of why well-educated people are disproportionately represented in our findings.”

Many MAID users previously had received hospice care. Still, the overwhelming majority—90%—chose to die at home, and nearly as many—88%—told their families of their plans.

“Further research in this area is necessary because although MAID will likely never account for more than a small portion of deaths, it is becoming more common in the states where it is legal, and it’s currently on the legislative agenda of another 14 states,” says Kozlov.

Complete Article HERE!

Medical aid in dying is still called ‘assisted suicide.’

An anthropologist explains the problem with that

By Anita Hannig

Several states around the U.S. are currently considering whether to legalize medical aid in dying for terminally ill patients. More than 20% of Americans already live in a state with access to a medically assisted death. Despite this rapidly changing legal climate, the language for describing this new way to die remains surprisingly antiquated.

The term that continues to dominate media coverage on the issue is “assisted suicide.” The American Medical Association uses the term “physician-assisted suicide.”

A quick look at Google Trends reveals that nine times as many people search for “assisted suicide” as “assisted dying.”

As a cultural anthropologist, I know that how we name something determines how we think about it. Until just recently, the primary term in the English language for the purposeful, voluntary death of oneself was “suicide.” Besides martyrdom or sacrifice, there was no other way to refer to an intentional self-death.

But times have changed. For the past 25 years, since Oregon enacted the country’s first assisted dying law, a medically assisted death has occupied a new legal and moral category. An assisted death is a medical response to the devastating reality of terminal illness.

Equating assisted dying with suicide isn’t only antiquated or misleading – it’s actually harmful. I have spent five years shadowing patients, families and physicians involved with assisted dying in America, and I saw how damaging this conflation can be. In my new book, “The Day I Die: The Untold Story of Assisted Dying in America,” I explore the complexities and constraints of the choices that people who pursue an assisted death face.

A loaded term

Until well into the 19th century, suicide was viewed as a crime in the United States, punishable with confiscation of the deceased’s property and denial of a Christian burial. Although suicide – but not its assistance – has been decriminalized today, it remains heavily stigmatized. As philosopher Ian Hacking writes, “News of a suicide among us has an immediate response: horror.” Calling assisted dying “suicide” taps into the social taboos and moral outrage that surround the act of taking one’s life.

That stigma can lead to very sick patients’ hiding their desire to pursue an assisted death from loved ones for fear of being judged for “suiciding” – leaving patients without critical support. It also poses a problem for terminally ill patients who have a strong wish to be released from their suffering but whose religion considers committing “suicide” a sin. One devout homeless patient from Portland with end-stage renal failure spent his last waking moments before he drank the lethal medication agonizing about whether God would forgive him for ending his life.

As I found during my research, the conflation of assisted dying with suicide sometimes causes families to feel isolated in the bereavement process. Afraid of being shamed for “abetting” their loved one’s “suicide,” some have had to mask their grief.

Valerie, whose elderly mother used Oregon’s assisted dying law in 2018, told her supervisor at work about her mother’s chosen death. He emitted a “hushed groan,” offering no condolences for her loss. “After that encounter, I only revealed the details to trusted friends and family,” Valerie told me. “It added a layer of sadness to expend energy trying to figure out what someone’s reaction might be.”

Bereavement experts call this type of mourning “disenfranchised grief” – hidden grief that is not fully acknowledged or even allowed by society because of the way someone died, such as from a drug overdose or in utero.

A medical procedure

From their inception, assisted-dying laws in America were designed to mobilize the tools of medicine to ease suffering at the end of someone’s life. These laws draw a clear line between assisted dying and a suicidal act. The nation’s first assisted-dying statute, Oregon’s 1997 Death with Dignity Act, specifies that “Actions taken in accordance with [the Act] shall not, for any purpose, constitute suicide, assisted suicide, mercy killing or homicide, under the law.”

As Roger Kligler, a physician and cancer patient who is suing the commonwealth of Massachusetts for his right to die, put it, “Calling it suicide means that we’re not talking about end-of-life issues.”

The participation of medicine and a patient’s social network, write psychiatrists John Michael Bostwick and Lewis Cohen, are what differentiate assisted dying from suicide. An assisted death is collaborative and sanctioned by a patient’s support system – not unilateral and covert. “When they acquiesce to requests to facilitate dying, [physicians] are not abetting suicide or committing homicide,” Bostwick and Cohen write. “The distinction between clinical suicide and other types of end-of-life decisions demands a new formulation.”

Key differences

Terminally ill patients who seek an assisted death aren’t suicidal. Absent a terminal prognosis, they have no independent desire to end their life. In fact, prescribing physicians must uphold the distinction between assisted dying and suicide in their clinical work by screening for mental illness, such as depression (which is clinically associated with suicidal thoughts). A patient who shows any signs of mental impairment must undergo further scrutiny by a mental health expert.

Patients who pursue medical aid in dying are no longer looking at an open-ended life span either. To qualify for an assisted death in states with these laws they must already be on the verge of dying – that is, within six months of the end of their life. These patients don’t face a meaningful decision between living and dying, but between one kind of death and another.

As more states are inching closer to legalizing assisted dying, it’s time that we revise and refine our cultural lexicon around this emergent end-of-life practice. A medically assisted death definitively warrants a linguistic and conceptual category of its own.

Complete Article HERE!