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.

by

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!

How can doctors be sure a medically assisted death is a ‘peaceful’ death?

Despite tens of thousands of MAID deaths and concerns over expanding eligibility for medical assistance in dying, little has been said about how people die. Here’s what we know

Death by doctor-administered lethal injection is the primary form of delivery of assisted death in this country.

By Sharon Kirkey

In the final moments before pushing the syringe, Dr. Chantal Perrot will pause and ask a final time: “The medications I’m going to give you will cause your death. Is this what you want?” The Toronto family doctor has been providing medical assistance in dying (MAID) since the act was decriminalized in Canada in 2016. Together, she and those colleagues across Canada willing to help end a life have presided over more than 21,000 deaths. Twenty-one thousand people who responded: “Yes. This is what I want.”

People fall asleep with the first sedative, Perrot said. Lidocaine comes next, to help numb the vein and prepare it for the third injection, propofol, which puts people into a deep coma. Propofol can sting as it flows through a vein. Lidocaine, what dentists use for freezing, can help reduce any burning sensation.

“When I’m providing the medications, I’m looking at their faces and I’m holding their hands,” Perrot said. She has a finger on their pulse. Soon, there is no movement, no response, she said. Many of the people who seek her help to die are weak and frail, and the doses of drugs so large that death occurs quickly, she said. Five minutes, eight minutes at most.“I have seen absolutely no suffering,” she said.

The medications I’m going to give you will cause your death. Is this what you want?

Dr. Mark Bonta’s medical assistance in dying team has been involved in just over 200 MAID “interventions.” It is their collective experience as well, Bonta wrote in an email, that death by lethal injection is “one of a peaceful transition to the afterlife without any witnessed suffering.”

“Not once has a member of our care team approached me to discuss concerns they had around the patient’s comfort during the procedure,” said Bonta, an internal medicine specialist at Toronto General Hospital who oversees a team responsible for covering six sites across Toronto.

Peaceful, calm, serene, beautiful. Even elegant. All are words providers and family witnesses have used to describe MAID.But how can doctors be certain death is peaceful to the person dying?

Despite tens of thousands of MAID deaths, and concerns over the ever-expanding eligibility criteria, little has been said about how people die, including the drugs and heavy doses used to kill, the sequence in which they’re injected, and what they do to the body.

Canadian senators studying Canada’s new MAID law, Bill C-7, last year heard alarming testimony from Dr. Joel Zivot, an anesthesiologist and critical care doctor at Emory University School of Medicine in Atlanta, Ga., who was born in Winnipeg and went to medical school there and who forwarded the suggestion that death by MAID, he suspects, could feel like drowning.

Dr. Joel Zivot, an anesthesiologist and critical care doctor at Emory University School of Medicine in Atlanta, Ga.
Dr. Joel Zivot, an anesthesiologist and critical care doctor at Emory University School of Medicine in Atlanta, Ga.

Once the paralyzing drugs are used, the person can no longer move. “All bets are off,” Zivot said. “The outward appearance of calm and peacefulness is not really an evaluation as to what the interior experience of the person that is dying would necessarily have,” he told senators. “It doesn’t mean anything that outwardly it looks peaceful.”

“Canada has vaulted itself to the unenviable front of the line for this,” Zivot said in an interview with National Post. “I think my work is pretty close enough to what is happening in Canada that it warrants some circumspection, and that’s all I’m asking for.”

Zivot is a lifelong campaigner against capital punishment. His work involves studying autopsies of prisoners killed by lethal injection in the U.S. But these executions involve, except for one common sedative, different medications than those used in doctor-administered MAID in Canada. Bonta and other MAID providers say Zivot, who has never performed or witnessed MAID himself, is dead wrong, that his assumptions aren’t anchored in any published evidence and that it’s irresponsible to extrapolate findings from the autopsies of executed prisoners and claim they could be seen in the context of MAID.

In Canada, the law no longer restricts MAID to people whose death is reasonably foreseeable. As of next March, people whose sole underlying condition is a mental illness will also be eligible for assisted death. A joint parliamentary committee is studying whether MAID criteria should be further expanded still, to include mature minors and advance requests.The latest annual report on medically assisted deaths, which covers deaths in 2021, is due in July. As of the end of 2020, 21,589 MAID deaths had been reported in Canada. In 2020, there were 7,595 cases, accounting for 2.5 per cent of all deaths, and a 34 per cent increase over 2019.

Fewer than seven involved self-administered MAID, whereby the person swallows a doctor-prescribed lethal cocktail of drugs. The “oral protocol” isn’t legal in Quebec. Nova Scotia only recently made it available. It’s not popular for several reasons, including a higher rate of complications, longer, drawn-out deaths, and a higher failure rate. High-dose barbiturates are the drugs most used, compounded into a sweet liquid formulation that needs to be swallowed within a certain number of minutes so that it reaches peak levels. If people have trouble swallowing because of gut problems caused by disease, if they regurgitate, it can mean incomplete doses that fail to kill. Death can be prolonged, taking up to 10 hours. Even when properly absorbed, time-to-death can be highly unpredictable, according to a recent review. Most provinces require that a doctor or nurse practitioner be present with an IV back-up kit in case death doesn’t occur “within an agreed upon time.”

The vast majority will choose intravenous, because it’s faster and more predictable

Death by doctor-administered lethal injection is the primary form of delivery of assisted death in this country. “The vast majority will choose intravenous, because it’s faster and more predictable,” Perrot said.

When Bill C-14 came into effect, there was no consensus on how to perform euthanasia — which drugs to use, in what order. The law heralded a once unimaginable situation for doctors, a revolution in medicine that allowed doctors trained to support life to perform what was once forbidden.

MAID essentially involves administering an overdose of an anethestic used all the time in surgery, but unlike surgery, no one is supporting the breathing and the heart. Until MAID, doctors had never given doses this big.

Two years ago, the Canadian Association of MAID Assessors and Providers, CAMAP, published a paper on recommended drug protocols.The protocol recommends pre-filled syringes, inserting IV lines into as large a vein as possible and rapid injection of the drugs, in rapid succession, for a more rapid death. Once final consent is provided, the first injection is midazolam, a Valium-like sedative that makes people sleepy and calms their nerves and that has also been shown to block the formation of memories. Then lidocaine, followed by propofol, which is white and oily, milky looking, is given in a dose more than 10 times what would normally be used to put people under for surgery. Finally, a muscle relaxant, usually rocuronium, in a dose three to four times the normal amount. At that dose, rocuronium stops the muscles of the lungs from working, which stops the heart from working.

The sequence of death is coma, respiratory arrest (the person stops breathing) followed by cardiac arrest.Two IV lines are usually started, so that there’s a back-up if one gets “lost,” or slips out of the vein, causing the drugs to leak into surrounding tissue.

When doctors try to push large volumes of propofol through a peripheral vein, the vein sometimes bursts from the pressure. Some hospitals mandate a PICC line, a peripherally inserted central catheter that’s inserted by a radiologist or other expert. It’s a longer line that gets to a larger vein with higher blood flows, so there’s less chance of losing IV access.

Propofol makes people unconsciousness. It basically shuts down the brain. It depresses the central nervous system and, at high doses, decreases blood flow to the brain, and the rate of oxygen consumed by the brain, putting people into a deep coma.

Not once has a member of our care team approached me to discuss concerns they had around the patient’s comfort

The onset of action is roughly 40 seconds. “Often the mouth will fall open as the jaw muscles relax,” according to the MAID assessors and providers website. Some people snore. The large dose will also cause cardiovascular collapse. Blood pressure plummets, the heart rate slows. Often by the time he’s finished injecting the propofol, the heart itself has all but stopped pumping, said Dr. James Downar, a specialist in palliative and critical care at the University of Ottawa. “The dose of propofol we give is so high that by that point, there is usually little to no circulation. Because of the medication itself, and the loss of circulation, the person will be unconscious and stop breathing.

“In my practice, and I believe in most people’s practice, only after they see that the person isn’t making any respiratory efforts and is completely unresponsive, then you use rocuronium,” the muscle relaxant, Downar said.

Propofol can cause involuntary muscle movements including, more rarely, what looks like a very brief seizure. Rocuronium suppresses any movements, including what’s known as agonal reflexes. When people stop breathing and carbon dioxide builds up, acid builds up in the blood, which can cause spasms in the diaphragms. People can suddenly make gasping noises. “We don’t think they are signs of distress,” Downar said. “They’re just basic human reflexes, sort of primordial reflexes.” Vomiting can also happen when the diaphragm contracts, “which is not nice to see, so we give rocuronium to suppress that.”Monitors aren’t used. There are no monitors measuring brain waves or heart activity. Doctors say it would take away from the intimacy of the experience for the person and the family.

“In MAID, I just put my hand on their pulse,” said Dr. Bill Wong, program chief and medical director in the department of anesthesiology at Trillium Health Partners, and a member of the board of MAiDHouse, a non-profit that provides a home-like environment for those granted an assisted death.Wong said he senses respirations by watching or feeling the person’s chest, or measuring their pulse with his fingers on their neck or wrist. “With MAID, it’s often done at home. We want to make it a very non-clinical event for the patient and the family. So, we don’t bring in all these machines and do all this monitoring.”

“Sometimes I’ll shake the person’s shoulder. ‘Hello, John, are you awake there?’ And there’s no response, and from my practice, and knowing the medications and the doses we use, we know that the patients are not going to be aware and awake,” said Wong, who has performed, by his rough estimate, 200 to 250 MAID procedures. He knows Zivot personally. He trained with him back in Winnipeg, and later at Toronto’s Sunnybrook Hospital. “So, I do know Joel. But I can assure you clinically, and amongst all the providers, we find that the regimen we’re using is very good.”

“What we look for in terms of distress would be visible signs of grimacing or moving or something, and there is none of that,” said Perrot, chair of MAiDHouse’s board of directors.

What we look for in terms of distress would be visible signs of grimacing or moving or something, and there is none of that

“The only discomfort I have ever seen is sometimes from the (injection of) propofol, which is a very different thing than Zivot is talking about in his articles and allegations. I’ve heard him speak and I’ve read some of the things he’s written, and it makes absolutely no sense to me.”

Zivot did his residency in anesthesiology at the University of Toronto, and a fellowship in critical care medicine at the Cleveland Clinic in Cleveland, Ohio. He was once featured in an American Society of Anesthesiologist’s YouTube series, When Seconds Count, for the time he poured buckets of ice over a brain injured woman who was having a seizure, to prevent further brain damage. The hospital’s cooling blanket was broken. More recently, Zivot was the lone witness called by the defence in the murder trial of an Ohio doctor charged with killing 14 dying patients by authorizing large doses of fentanyl. Zivot testified that underlying health problems caused their deaths. In April, a jury found William Husel not guilty on all counts.

Five years ago, Zivot was handed a pile of autopsies from 43 executed American prisoners, and when he looked at the autopsies there was a common finding of lung injury, specifically, pulmonary edema, the accumulation of fluid in the lungs that can occur classically in heart failure and that, as an ICU doctor, he sees not infrequently. “It’s a very distressing kind of thing to happen,” he said. “You’re basically drowning in your own secretions.”His theory is that the drug pentobarbital used in capital punishment, when administered in the quantities injected, can have a toxic, noxious effect on tissue and “burn the lungs from the inside.” He’s been an expert witness against the use of lethal injections for executions in America. “Every time I did this, I lost every single time,” he said. “The court is not so much interested in private suffering.”

Pentobarbital is not used in MAID in Canada. “But I think propofol could do the same thing because of the way it’s configured,” Zivot said. His hypothesis is entirely unproven. “There’s no study that has looked at this specifically, because there is no therapeutic setting that would permit it,” he acknowledged. “There’s no animal study that, as far as I know has ever been done that looks at this very high dose of propofol, because it would be unethical.“My opinion is based on this: 100 mg of propofol, when it’s injected, it burns. It burns in the veins. People say so. If I gave them 10 times that amount, I would be concerned that burning sensation could be quickly transmitted through the body, and the lungs are particularly at risk for that kind of potential problem.”

“You’re right: I don’t know. My ask here would be to perform autopsies on people who have been given high dose propofol.”

When they say things to me like this is ‘beautiful,’ I know that we’re not any longer having a scientific conversation

None of the drugs used in euthanasia have a package insert that includes an indication or dosage to be used to kill, he said. He also questions why MAID patients are getting a paralyzing drug to keep them from moving if they’re already dead. He worries paralytics could mask an unpleasant death and has argued that their use in MAID should be ceased.

Is he opposed in principle to MAID? “I can’t know,” he said. “I have concerns, grave concerns, about MAID, as many others do. We don’t want to be killing people who are sad and lonely and poor. No one thinks that’s a good idea, and yet that’s happening.

“So, do I have concerns? Yeah, I have concerns. I also have concerns about how medicine is the handmaiden here. I have concerns with the fact that MAID (proponents) are being murky about how they think people are dying.”

He is not arguing that Canada’s MAID law should be repealed. “But when I talk to people who are doing MAID, they get very defensive, and when they say things to me like this is ‘beautiful,’ I know that we’re not any longer having a scientific conversation.”

Zivot wrote that MAID in Canada “may very likely provide a torturous death.” But even a sedating dose of propofol can render one “insensate,” unable to feel anything, one anesthesiologist wrote in the comments section. Even if pink, frothy fluid accumulated in the lungs, “you cannot make any judgement of comfort based on pathology samples,” Downar said. “That’s not how you assess comfort.”

Those seeking assisted death must be suffering “intolerable” or “unbearable” physical or psychological pain. “Please, please, please give me two minutes of ‘death by drowning’ (that I would most likely be cognitively unaware is happening) over days, weeks, months of agonizing pain from a metastatic cancer that I am not going to survive,” another reader commented.

Complete Article HERE!

Where Do the Dead Go in Our Imaginations?

My friend was gone. I needed to do something to honor the person she was.

By Anakana Schofield

In the west of Ireland, in County Mayo, where my mother lives, there’s a lovely tradition of attributing words or phrases to people. If they are dead, you add an acknowledgment after their name along the lines of “May the Lord have mercy on their soul.”

I love how this reignites the spirit of a deceased person you may or may not have known. You can build an entire sense of someone you never met from hearing their expressions. And for those who knew them, that person can live again in the utterance of those sayings.

From a young age, I’ve had to contemplate death. Early childhood loss of a parent will do that to you. My father died when I was 6. Since then, I’ve been trying to understand the cumulative nature of grief. The resounding question of my life has been, Where do the dead go in our imaginations? Increasingly as I age, I’ve wondered where I will go in people’s imaginations. Will anyone remember me? Will I still matter to anyone once I am dead?

After all, as time passes, people can become the subject of their exit. My friend who was hit by a car. My friend who had an asthma attack. My friend who took her life. After the pandemic we will also have to decide how we will talk about the lives of those who were taken by Covid-19: Will the lives they lived be overshadowed by the fact that it was Covid-19 that extinguished them? Will their years of living be reduced to the name of a virus that wiped them out in a matter of days or weeks?

These questions confounded me even before the pandemic. Five years ago this month, one of my oldest friends died by suicide (though it is so tempting to say that she “died suddenly”). A lifetime of loss would not prepare me for the way this buckled me in half. I would see my friend in the T-shirts my son put on, every time I picked up a tea towel or made a cup of tea, because this friend was so incredibly generous, she wallpapered my entire life with that generosity and love. It wasn’t about the objects as much as the thought that at the time she picked out the tea towel or the many tea tins that line my cupboard, she did so because I was on her mind. I was alive for her even though I was absent. In that moment she chose to remember me. How can I return this gesture now, when she is no longer here?

In a way, my friend’s endless generosity has kept her alive for me, but inevitably, whenever I experience small mercies or achievements or special moments, her devastating absence is felt as large as it ever was. I can become overwhelmed by the thought that I failed as a friend, since I never sufficiently demonstrated how important she was to me and now it is too late.

My beloved friend was not just generous; she was an extremely effective and reliable health care professional with boundless empathy and patience who did not take shortcuts. I know this because I watched her work through lunches and weekends to fill out charts, and rarely take sick days. I know she was someone who saw and heard patients in all the ways we need to be heard and seen.

In time, I decided that the only way for me to consistently keep this particular person alive in my imagination was to try to do something that would put me into the precise spirit of who she was. But what that something would be was not yet clear.

As it happened, while researching my novel “Bina,” which explores female friendship and the right to die, I began an email exchange with Dr. Sue Hughson, who was volunteering for Dying With Dignity Canada. She asked if I would be interested in becoming a volunteer witness for the organization. It seemed that this would be something my friend might do and that I might be able to keep her spirit alive by being a compassionate witness to others in their dying. I agreed.

Medical assistance in dying or MAID, which was previously known as voluntary euthanasia, is legal in Canada. All applicants require two witnesses to sign the paperwork to commence the application process to MAID. As volunteer witnesses, we cannot be involved in the care of the dying or be beneficiaries of their wills. We go in pairs. We read aloud (or have patients read) a series of statements confirming that they understand the nature of the request they are making, that they have had all their treatment options explored and explained to them and that they are free to change their minds at any time in the process.

The visit is generally not long — roughly 20 to 40 minutes — yet in those moments we enhance our humanity by helping strangers’ requests for their end-of-life choice be heard and considered. “Choice” is an important word: I have never been in any situation where I was in any doubt that the person had absolute clarity and full understanding of what they wanted, because if I had been, I would not have been able to sign the form. The next step involves assessment by two doctors independent of each other to determine whether the patient qualifies for MAID. Once the form is completed, there’s usually palpable relief from the patient and always enormous gratitude to us for volunteering our time.

In such brief interactions there can be unexpected, profoundly moving exchanges and experiences. There can be laughter and humor. There is nothing I have seen more beautiful than patients supported at this moment by their siblings, children or friends, nothing more loving and compassionate than family members or dependents who are struggling visibly through silent tears, yet stay to support and comfort their loved ones.

Occasionally parents become aware their son or daughter is distressed and spontaneously give a soliloquy to all present; they announce that their child is a good son or a good daughter and plead gently, “Don’t be sad. It is time.” Once a man asked us to turn on Ozzy Osbourne’s “Mama, I’m Coming Home,” and we rocked out to it around his bed.

Every time I have the privilege of witnessing in this way, I feel the presence of my beloved friend in that room with me. Her spirit, her patience and her willingness to hear people live in this act. Every day it’s a struggle for me to imagine she is with us no more, and I find myself pondering, “Where can she be? How can she be gone? How is this possible?” I have concluded she lives now in my ability to imagine her right there with me in the room when I witness, for she was brave and nonjudgmental, kind and honest, warm and supportive, which is the truth of what takes place in these interactions.

Recently, I decided to take a full-time job at a nearby lab receiving and processing specimens for coronavirus tests. At the end of the first week, I was exasperated and exhausted and feeling quite useless. I am older than most of the workers, and slower and more easily flustered. The one thing I held on to was the knowledge that my friend would have been proud of me for working in that lab.

So this is where the dead go in our imaginations: They continue to live with us in the moments when we are sad and terrified. They cheer for us. They give us unbelievable strength and the courage we lack to carry on in situations. They coax us through. They lead us where we need to be, to experience the joy and capability that was them. They who have been with us in life manage to teach us how and where in death we can listen for them and find their voices and essence again.

Complete Article HERE!

Does grief depend on how the loved one died?

by

Is the grief experience different for individuals who have lost a loved one by medical assistance in dying (MAiD) compared to natural death with palliative care (NDPC)?

Philippe Laperle examines this sensitive issue in a recent article published in the Journal of Death and Dying, based on his Ph.D. research under the supervision of Marie Achille of the University of Montreal’s Department of Psychology and Deborah Ummel of the Université de Sherbrooke’s Department of Psychoeducation.

Previous research suggests that following the medically assisted of a loved is no more challenging or complex than grief in other dying contexts, including sudden natural death or suicide. Some studies have even concluded that it may be easier.

Comparing two groups of bereaved individuals

To date, however, no one has compared bereavement following the loss of a loved one by MAiD and by NDPC, considered the “gold standard” in in end-of-life care and death preparation.

Laperle recruited 60 subjects who had been bereaved for at least six months. Twenty-five of them had lost a loved one by MAiD and 35 by NDPC. In the majority of cases (48), the cause of death was cancer.

The 51 women and 9 men first completed two questionnaires assessing different aspects of grief, symptoms of distress and the presence of prolonged grief disorder requiring professional psychological support. This quantitative component was followed by in-depth interviews with 8 members of each group.

No overall differences, but a diversity of experiences

Contrary to his initial hypothesis that grief would be easier after MAiD than after natural death, Laperle did not observe any significant differences in intensity or distress between the two groups.

The low scores for distress symptoms indicate that “these two contexts tend to make grief easier in certain respects,” said Laperle, “although some bereaved individuals still reported a more difficult grief experience characterized by depression and guilt.”

The interviews showed that the experiences of the bereaved were diverse and, sometimes, mixed in both groups. And that the traces, or “imprints,” left on the bereaved individual by their loved one’s final moments and the separation brought by death could be painful, comforting or both at the same time.

“When preparation for death and acceptance of its coming unfold at a similar pace in the dying person and their loved one, the two arrive at the same point mentally and emotionally at the time of death, which makes the subsequent grieving process easier,” explained Laperle. “But if one of them accepts the impending death while the other remains in denial, this leaves imprints that are more difficult to overcome.”

But regardless of whether the loved one passed away by MAiD or naturally under palliative sedation, in which case the person gradually slips into unconsciousness and death, some bereaved individuals felt the process was rushed. In general, those who were in synchrony with their loved one experienced the death more serenely and felt it came at the right time.

Differences were also found n the subjects’ memories of the loved one. In the case of MAiD, some of the bereaved remembered the departed as a “hero” who embodied values of freedom, control, courage and/or immortality. In the case of NDPC, the departed was more likely to be remembered as the embodiment of a beauty that never fades completely although it withers. Others felt left behind by their hero, which created a even greater void after their passing.

“It’s important to remember that every grieving process is different and that not everyone will be left with the same imprints,” said Laperle. “In general, imprints fluctuate over time, arising momentarily to then dissipate and even transform. Other factors also impact grief, including the person’s relationship with the deceased and degree of involvement during the illness. These factors can increase or decrease the effects of the imprints left by MAiD or NDPC.”

Complete Article HERE!