But according to some health experts, one of the most critical health inequities among L.G.B.T.Q. adults often goes overlooked.
A mounting body of research shows that L.G.B.T.Q. adults are more likely to have worse heart health than their heterosexual peers. Lesbian, gay and bisexual adults were 36 percent less likely than heterosexual adults to have ideal cardiovascular health, the American Heart Association concluded in 2018, based on surveys of risk factors like smoking and blood glucose levels. In 2021, the organization released a statement on the high rates of heart disease among transgender and gender diverse individuals, linking these elevated rates in part with the stress that comes from discrimination and transphobia.
The data supports what clinicians, and those who research L.G.B.T.Q. health, have observed for decades — that the community faces particular, pervasive obstacles that take a toll on the brain and body.
Cardiovascular disease is the leading cause of death in the United States. The Centers for Disease Control and Prevention estimates that 80 percent of premature heart disease and strokes are preventable. But there are disparities in where this burden falls among the general population. We spoke to doctors and health researchers about why these inequities persist, and what steps L.G.B.T.Q. adults can take to bolster their heart health.
Stress directly impacts certain hormones that regulate your blood pressure and heart rate, said Billy Caceres, an assistant professor at the School of Nursing and the Center for Sexual and Gender Minority Health Research at Columbia University.
Hypervigilance — the sense of always being on edge, constantly scanning for the next threat — causes cortisol levels to surge, which can lead to long-term cardiovascular issues, said Dr. Carl Streed, an assistant professor at Boston University School of Medicine.
Plus, stress can lead to chronic inflammation, said Dr. Erin Michos, associate director of preventive cardiology at Johns Hopkins University School of Medicine, and it can raise your blood pressure and heart rate.
Researchers sometimes refer to the allostatic load, the cumulative toll that chronic stress takes on the brain and body, said Scott Bertani, the director of advocacy at HealthHIV, a nonprofit focused on advancing prevention and care for people at risk for H.I.V. “It only stands to reason that our bodies respond to these really complex and challenging life events and demands,” he said. For instance, he added, the act of coming out, and in some cases, coming out repeatedly, often comes with severe stress.
To cope with the constant threat of discrimination or harassment, many in the L.G.B.T.Q. community self-medicate with drugs like tobacco and alcohol, said Dr. Streed, who is also a researcher at the Center for Transgender Medicine and Surgery at Boston Medical Center. These industries have targeted the L.G.B.T.Q. community through advertising, he said, especially during Pride month. The Centers for Disease Control and Prevention reports that around 25 percent of lesbian, gay or bisexual adults used a commercial tobacco product in 2020, compared with 18.8 percent of heterosexual adults, a disparity the agency partially attributes to the tobacco industry’s long history of aggressive marketing campaigns.
Research has also identified a link between sleep and heart health, Dr. Caceres said. Mounting evidence shows that L.G.B.T.Q. adults experience more sleep issues and interruptions than the general population, which may also be tied to chronic stress.
Obstacles to seeking care
A 2017 survey of nearly 500 L.G.B.T.Q. adults by researchers at Harvard T.H. Chan School of Public Health and the Robert Wood Johnson Foundation found that more than one in six reported avoiding health care because they worried about discrimination. That hesitancy means that L.G.B.T.Q. adults are less likely to access potentially lifesaving preventive health care, said Dr. Michos. All adults should be screened at least once a year for cardiovascular risk factors, which is typically part of an annual physical, she said.
Finding medical providers that you feel comfortable and safe around can be key in preventing heart disease, experts said. Dr. Streed recommends that L.G.B.T.Q. adults seek out supportive medical practitioners. The Gay and Lesbian Medical Association offers a directory on its website that allows patients to find health professionals. The Human Rights Campaign creates an annual Healthcare Equality Index — a list of health care facilities that say they are inclusive of L.G.B.T.Q. patients.
What L.G.B.T.Q. adults should know about improving heart health
While gender-affirming hormones have been shown to positively impact mental health, Dr. Michos said, there is some evidence that high amounts of testosterone and estrogen can have cardiovascular risks. People who are taking these hormones should consult their doctors about how to maintain their heart health.
The American Heart Association recommends seven steps for optimal heart health: managing blood pressure, keeping cholesterol levels low, reducing blood sugar, exercising daily, eating a nutritious diet, maintaining a healthy body weight and not smoking. Dr. Michos also recommended minimizing consumption of processed foods, sugar-sweetened beverages and highly refined carbs, instead opting for whole grains, lean proteins, and plenty of fruits and vegetables. Adults should also aim for at least 30 minutes of moderate-intensity exercise each day, like brisk walking, jogging or cycling.
These are critical facets of preventing heart disease, she added, “but we can’t just preach ‘You need to live a healthy lifestyle’ if individuals are under significant psychological distress and discrimination.”
Social support can help buffer against the physical and psychological strain of stress, she said, and seeking out community can be particularly crucial for L.G.B.T.Q. health outcomes. Several organizations can help L.G.B.T.Q. people connect with one another: SAGE, a nonprofit focused on aiding older adults, matches volunteers with L.G.B.T.Q. people over the age of 55 for weekly phone calls. The Trevor Project, which provides crisis intervention and suicide prevention services to L.G.B.T.Q. young people, also offers an online community for those between 13 and 24. The Bisexual Resource Center, a nonprofit focused on bisexual issues, maintains a list of online and in-person support groups for bisexual people.
“L.G.B.T. health isn’t just about H.I.V. prevention,” Dr. Caceres said. “A lot of the time, it ends up being focused on that. Sexual health is not the only dimension of health that we as queer people should be thinking of.”
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.
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.
Grief is one of those experiences that seems like a black-out to me. To comprehend the magnitude of what death really means—that concept of forever—is so challenging on an intellectual level that part of us shuts down in response so we can attend to the thought. Or use all our energy to escape it.
When I was writing my debut novel, Garden of Earthly Bodies, I found the subject of grief almost impossible to write about. There is a passage where the main character, Marianne, has a nightmare about her sister and, when she wakes, becomes completely inconsolable when she realizes once more that her sister is gone. She can feel the truth like “a black spot” moving through her body and eventually into her brain, and she knows she will give into the horror of it quickly.
That is how I feel that grief operates, like a kind of sickness, sometimes in remission but often flaring up without warning. When I think of that concentrated black spot, something automatically forces me to resist it, like my mind has its own immune system. For the most part, I want to be well.
The act of mourning itself is a final, destitute version of love. It is a mangled, tortured, messy last phase of it, one that exists for itself alone, without answer and without hope of being reciprocated ever again. It’s also a small act of rebellion against the world, ignoring all calls to be healthy, sane, responsible. Perhaps there is “a bitter and unbearable relief” in this unravelling, as Chimamanda Ngozi Adiche writes in her powerful memoir, Notes on Grief: a special, desirable form of “madness” that releases us from any previous obligations and social rules, and which brings “strangely pugnacious thoughts.” It is a form of aggression, of righteous hostility. And though everyone says “time heals,” grief seems to distort your perception of time—you can’t believe it will lessen, or perhaps you don’t wish to believe it. To get beyond the pain is to reduce it to something peripheral; when to live in the center, to inhabit the black spot, attributes value to it. If that value is lost, we know that nothing else can ever live up to it.
I always think of a passage from Javier Marias’ The Infatuations, where a woman’s husband has been killed and a character predicts that she “isn’t going to stay trapped in the moment, no one ever is, still less in the very worst of moments, from which we always emerge, unless we’re sick in the head and feel justified by and even protected by our comfortable misery.” You have to set aside the value of mourning in order to move forward, and this is where remorse slips into the equation. We are no longer loyal in our misery, in our sickness.
Achieving a balance between excessive mourning and rehabilitation is extremely difficult. These books all touch upon grief and mourning in ways that really affected me. You can see the excess, but also the dignity, compassion and sometimes a shade of humor in these passages. It’s a relief to find the experience of grief articulated in such an uncompromising fashion, and to know that somebody else has made that mental leap without losing their mind. That this intensity can be returned to, but with the tools of self-expression at your disposal.
The heroines in Brookner’s novels are often burdened by their sickly, aging relatives. In A Start in Life, the protagonist, Ruth Weiss, doesn’t feel that she can fully exist until she moves away from home and gives up her obligations to her family, yet the guilt of abandoning them keeps her trapped there. Her mother, Helen, is vain and self-absorbed, but she’s physically frail and frightened of becoming irrelevant. Ruth’s father is a delicate man who hasn’t learned to look after himself or his wife. What I love about Brookner’s writing is that she manages to provoke such sadness when you least expect it, and for characters you think you despise. There is a death towards the end of the book that is heartbreaking because of the conflict that precedes it.
Ruth knows she is about to lose this person just before they slip away—in a very humiliating, undignified context—without feeling that she is grown up enough to handle the situation. The death itself is characterized by exhaustion and defeat. It is one of the most moving descriptions of just giving in to death, of finding no strength—and, crucially, no desire—left to sustain oneself that I have ever come across. It almost seems like the character dies through a sudden crash in self-confidence. Brookner loves returning to the concept of will, the sheer force of personality, which is as essential to existence as the heart beating in our bodies. In this moment, that willpower has finally run out and Ruth cannot bear to witness the evidence.
John Williams’ Stoner is a beautifully written book about lost opportunities. I don’t think I have ever cared so much for a character who has achieved so little that he wanted in his life, and who, in his final decline towards the end, still feels that he never became the person he was meant to be. Williams makes us mourn for Stoner as he looks back on his disastrous marriage, his ill-fated love affair, and his middling academic career. On his deathbed, his wife forms a new understanding of their relationship, and he also considers how easily things might have been different if they had started their marriage with the thoughts they had now: “It was a quietness that was like the beginning of love; and almost without thinking, Stoner knew why it had come. They had forgiven themselves for the harm they had done each other, and they were rapt in a regard of what their life together might have been.”
Instead of mourning what they had, they mourn what they might have had, but this couldn’t have been possible. The generous feelings they now have towards one another are forged through difficult experiences—years of animosity, so many errors of judgement—and they’re also, to a large extent, intensified by grief. It’s impossible to start over and explore this avenue again. This is perhaps the most tragic aspect of the book, that so much passion has been squandered or misplaced. I also felt like I was mourning for this character so much because Williams gave us such a special insight into who he really was, all the hidden nuances of his character, the latent passions and ambitions that were never fully realized.
Brian Dillon writes movingly of the mixed emotions he feels when revisiting painful memories. In the Dark Room is chiefly about the workings of memory, what certain places from our past can do to us when we return to them, a “house, so swiftly cleansed of all tangible history, suddenly insist[ing] on reminding me that something has happened here.” Dillon writes retrospectively of a very dark period in his life—the intervals before and after his parents’ deaths. His mother died from an autoimmune disorder when he was sixteen, and his father then had a heart attack five years later. The latter loss was sudden and completely unexpected, but the death of his mother came after a long and traumatizing illness. I admire this book so much because it’s unsettling and sometimes unpalatable. The writing itself is poised and cerebral, but you can feel that vein of horror weaving itself into every response.
What struck me as a particularly powerful passage was the moment when Dillon, a confused and shell-shocked sixteen-year-old, sees his mother’s body in the mortuary. Grief is as much a performed duty as a private emotional state. Dillon looks at her face and wonders what he should be feeling, and what the spectacle actually means, overthinking every moment: “I have… no idea how to behave before a body which seems a reminder only of my distance from my mother’s death. And so my lasting impression of that moment is one of unconquerable shame.” Perhaps this is worsened by the fact that this moment had been anticipated for such a long time, not the viewing but the loss itself. His emotions have been pushed to a breaking point. There is a momentum to despair, and it can’t be maintained forever—we would just go mad. Funerals are often places where momentum fails or we’re just too self-conscious to delve into ourselves.
Amelia is a mortuary cosmetologist. She has always loved the strange solace of preparing the dead for their last ceremonies, painting every face with extreme care. Though she is surrounded by death on a daily basis, she is strict when it comes to her own feelings on the matter: “I’ve learned to adjust by compartmentalizing. I can separate feeling into imaginary boxes inside the mind. In one box, I put all the delicate fractured wounds of the bodies I see all day … Then, in another box, I shove all the vivid warmth and liveliness of the people I see at night.” The book is mainly about how Amelia tries to escape having to go through grief at all, or at least delay the process for as long as possible, by having aggressive sex with strangers and experimenting with BDSM (the more outrageous and humiliating the encounter, the better).
It’s also about the way that we’re expected to behave, and the pressure to derive meaning from every small thing. Perhaps one of my favorite moments in the book is when Amelia visits an exhibition with her father at the Museum of Old and New Art in Tasmania. She is confronted with all these pieces that are so obscure and relentlessly clever that she longs instead for a drink at the bar, to be free of any obligation to feel or think. One piece is incredibly dramatic, but it only irritates her: “There’s something so brash and jarring about the installation that it makes me feel even more disconnected from the world. I can’t relax around repeated invitations to be introspective.” I love this last sentence and it’s a sentiment I recognize. You can’t produce the correct emotional response on demand, and other people’s interpretations of grief can sometimes be oppressive. New Animal is such a great novel about wanting to mourn in a totally unorthodox way, free from judgment, surveillance, and pressure.
Chimamanda Ngozi Adichie’s memoir about the grief she experienced after her father died is an incredibly visceral piece of writing. Her words ring with shock and awe as she describes the way her body has reacted; it is no longer benign or even inhabitable. “I did not know that we cry with our muscles… my tongue [is] unbearably bitter, as though I ate a loathed meal and forgot to clean my teeth; on my chest, a heavy awful weight…” There is a lingering sourness to her despair, but it’s also surprisingly exhilarating, her heart becoming “its own separate thing, beating too fast, its rhythms at odds with mine.” Throughout Adichie’s writing, you sense that the process of mourning is one that invigorates her, despite its obliterative quality. Instead of being numb or completely nullified, her consciousness seems to be expanding.
I am struck by her choice of words—a “shimmering panic,” grief “forcing new skins” on her, this luminous, haunting beauty in her writing. You sense that she is riveted by the change in herself and also wants to surrender to it privately, without an audience. Her book demonstrates how reclusive grief can be, in that it can’t be shared and divided so easily. Though Adichie’s family are eager to process their grief together, she longs instead to “sit alone with it” and process it in her own time, without the intrusion of anybody else’s thoughts and observations (many of which are clumsily worded). It’s one of those moments where you can feel her irritation creeping in, and it’s justified—how can we expect to synchronize such vastly different emotional experiences?
Often, a death can cause a “rupture” in the family dynamic, a sudden fault line where tensions deepen, everyone requiring competing modes of reassurance. Though Adichie’s memoir is ultimately about the prevailing strength of family, she also explores how stifling that very strength can be. She often doesn’t have any interest in holding it together for the sake of anybody else. Stoicism is suddenly undesirable because there is nothing as satisfying, as strangely nourishing, as giving into your own despair. And it is rewarding for the most part. Adichie ends her book with the “new urgency” this despair has taught her, to write everything in the time she has (not knowing how much time is ever at our disposal—something her father’s death has compounded). Any reticence or complacency she once had is gone, because life is too short to keep anything in reserve.
When it comes to talking about death, we have no shortage of euphemisms. This is perhaps most famously illustrated in Monty Python’s dead parrot sketch from 1971. A pet shop worker insists to a customer that his new parrot is “not dead but resting, stunned, pining for the fjords, kipping on his back, tired and shagged out after a long squawk”. The customer responds: “It is an ex-parrot, deceased, gone to the choir invisible, is pushing up the daisies, demised, passed on, is no more, has ceased to be. It’s expired and gone to see its maker, is a bereft of life, late parrot that rests in peace.”
Talking openly about death – and dying – can be difficult. People who have cared for someone who is dying have been shown to feel they can engage more easily with this behaviour. Their experience helps them overcome the barriers that so many of us feel.
Being able to talk about death, dying and loss is an important aspect of what psychologists and palliative care specialists refer to as “death literacy”. This is the practical know-how about how to gain access to, understand and make informed choices about end-of-life and death care options. It directly shapes the decisions we make about the care we receive as well as our ability to care for others.
We conducted an online survey in 2019, where 381 adults in Northern Ireland were asked what prevents them talking more about death and dying.
We found that people feel ill-equipped for talking about death. When talking with someone else about that person’s situation, they worry they might say the wrong thing, or be unable to help that person navigate the emotions these discussions bring up. As one woman put it:
At times you want to avoid upsetting someone even though you know it would be good for them to talk
Conversely, when asked what would encourage them to talk more about death and dying, a young woman suggested:
When you compare the polarity, between birth and death, of how much it is acknowledged, it’s bizarre. Death is just as big a part of life … If we could all embrace it and bring a sense of community and camaraderie to it, it wouldn’t be as dark and frightening.
What is death literacy?
In 2021 we surveyed 8,077 UK adults. Our results showed that in their final days of life the top priorities for most people were to be free of pain and other symptoms, to be in the company of loved ones, and to maintain dignity and respect. Despite this, most reported not having spoken to anyone about their wishes.
We know that as people’s health declines, there is the risk that they may lose the capacity to make important decisions about their end-of-life and death care. So being able to speak out, in advance, is crucial.
There are several aspects to empowering people to be death literate. Talking about death is important, but people also need other skills and knowledge to provide practical support around end of life and death.
We have found that people in the UK often do not know how to navigate the health system at end-of-life or funeral options for themselves or others. Almost half of UK respondents we spoke to reported they did not know where to find information on how to plan for care at the end of life. And more than half of the people we surveyed didn’t know where to find bereavement support.
Public health specialists, including UK charity Compassionate Communities, increasingly recognise that death, dying and loss are both central and inseparable from the social context. In other words, they do not happen in a vacuum. They are as public health sociologist Prof Allan Kellehear reminds us, “everyone’s responsibility”.
Anyone who is either approaching the end of their life, or caring for someone who is dying or grieving the loss of a loved one needs support. And the new public health approach to end-of-life care in the UK advocates that this support is best provided by healthcare providers working in tandem with death literate communities of family, friends and neighbours.
Researchers predict by 2040 most deaths will occur either at home or in care homes. Empowering people to advocate for their own end-of-life care as well as to care for those around them, has never been more important.
Dr. Molly Camp is an associate professor of psychiatry at University of Texas Southwestern Medical Center in Dallas. In a center news release, she said there are five domains to consider:
Personal needs and hygiene: Basic self-care activities, including bathing, dressing and toileting, must be met. A person’s ability to get in and out of tubs and showers and their risk of falling should be considered.
Home environment: Consider the ability to handle basic maintenance and repairs, as well as access to electricity and water, a sufficiently sanitary living environment and how to avoid safety hazards, such as structural deficiencies.
Necessary activities: Assess whether your loved one can complete complex, essential tasks such as transportation, shopping, meal preparation, cleaning and using technology.
Medical self-care: Your loved one should be able to manage their medications, care for minor wounds and self-monitor for illness.
Financial affairs: Evaluate whether the person has the ability to pay bills on time, track other finances, avoid exploitation, and enter into binding contracts when needed.
Of course, Camp noted, family members may be able to help manage finances and home visitation programs may be able to help with chores such as cleaning and cooking.
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.
Grief is never easy to navigate — but what about when your significant other’s going through it? If you’re wondering how to support a grieving partner, it’s a great question. After all, there’s no official handbook with the “do’s” and “don’ts” of grieving since it differs for everyone. Your partner may want space while someone else may want more togetherness.
“Whether one or both of you are grieving, it can be difficult to anticipate how each will cope,” Dr. Sanam Hafeez, NYC neuropsychologist and director of Comprehend The Mind, tells TZR in an email. “Some cope by reaching out to friends and loved ones, talking about it until they feel they have everything they need to say out of their system. Others refrain from bringing it up, isolate themselves for a while, and can even shut down.”
And if you and your partner have different ways of showing — or accepting — your grief, it can strain the relationship. “As a result, you may not know how to support one another in a way that makes the other person feel heard and seen,” she adds. So what are some things to keep in mind when trying to help your significant other as best you can? Ahead, Hafeez and other grief experts chime in.
Listen — Don’t Feel Pressure To ‘Fix’ Or Take Away Their Pain
When your partner loses a loved one, there are certain things you can do, and say, to help show them you care. “Let your partner cry it all out,” says Hafeez. “Let them feel what they want to feel by ensuring they are comfortable around you. But remember, everyone mourns differently, so be there for them whichever way they choose to cope (unless it’s dangerously unhealthy).” Emma Payne, CEO of Grief Coach, a text-based grief support network, says that when a partner is grieving, we feel we need to do something to take their pain away. “But that’s not possible when someone has died,” she tells TZR in an email. “Instead, simply listen and sit with them as they grieve. For many people, once they remove the pressure of having to somehow ‘fix’ or take away the pain, they’re better able to simply share in the experience and feelings their partner is having.”
Talk About Their Favorite Memories & Celebrate Monumental Occasions
Payne says one wonderful gift you can give your grieving partner is to talk about favorite memories you shared with their loved one — and to ask for their favorite stories and memories, too. “Playing music that the person loved, or going to their favorite restaurant, helps to keep their memory alive and shows your partner that the person who’s died is special and won’t be forgotten,” she says. “Also make a note in your calendar with important anniversaries and try to acknowledge those dates every year. For example, the date of death or the birthday of the deceased. This lets your partner know that you understand grief lasts a long time and that you’re there for them, for as long as it takes.”
Marisa Renee Lee, author of the bestseller Grief Is Love, has a whole chapter in her book about the role grief can play in a romantic relationship. In her book, Lee writes, “I quickly learned that finding your way back to unconditional love after grief is akin to finding your way out of a house of mirrors at a carnival. It’s all about, ‘How do you show up for someone you love who’s living with loss?’” she tells TZR.
She explains that she met her now-husband of four years after her mother died. “If someone you love, are married to, or in a relationship with is grieving the loss of someone they love, it’s really hard,” she says. “Sometimes, it can seem easier to walk away from the relationship rather than potentially expose yourself to that type of grief again.” And to maintain or build any type of an intimate relationship, it requires some level of shared grieving. She calls her now-husband her Grief Partner, and clarifies that a Grief Partner is not about sadness so much as support — they come from a place of empathy, understanding, and love. For instance, a Grief Partner can help you celebrate your deceased parent’s birthday or important occasions.
Identify Support Networks And Resources For *Yourself*
Lee says that one of her first pieces of advice to someone who is trying to support their partner through grief is for that person to identify their own support network and resources. This can mean reaching out to close friends and/or a bereavement group, religious leader, therapist, you name it. Or it can be something like practicing mindfulness or using a wellness app. “Because when people are grieving, the impact that grief has on our bodies and minds makes it really hard to be the person who people have come to expect us to be,” she says. “Your partner’s brain is literally reconfiguring itself to accommodate for the absence of someone they’re so accustomed to being in the presence of.”
Be Intentional About Setting Boundaries
When you are trying to figure out how to navigate grief with someone else, Lee thinks it’s also important to be intentional about setting boundaries. “It’s tough being in a relationship with someone who’s going through something that’s really hard,” she says. “You want to be there for them — and you should be there for them — but you also need to set some boundaries around your own care and needs; otherwise, you won’t actually be able to continue to show up for them effectively.”
Show Empathy & Grace
Lee thinks empathy and grace are also key. “I think that goes for the person who’s providing support and the person who’s grieving — because at some point they’re going to mess up in terms of supporting you,” she says. “We’re all human. They’re going to forget to do something that you ask them to do, they’re going to forget to check in on you the way that you want them to, they’re going to make a mistake. So making sure that some combination of empathy and grace are a part of that relationship — and those conversations — is really important.”
Verbalize Your Support
Hafeez adds that you can also verbalize your support with statements such as, “I am supporting you today and every day,” “It’s okay to feel the way you do,” “Always remember that they are proud of who you are,” “They loved you very much,” and “Take as long as you need to mourn.” Of course, make sure your actions match your words though. If they’d like your support and for you to spend time with them, don’t suddenly bail. Hafeez adds that you should allow yourself to get comfortable with being uncomfortable. “You may find yourself sitting in silence, holding one another when you’re crying and listening to each other talk through what they’re feeling,” she says. “Be there for one another during difficult times, as a shoulder to cry on, or someone to answer condolences for you. The smallest things can help more than you may think, and offering help with distracting your partner with a movie night, puzzle, walk in the park, or just sitting next to them in silence can be all they need.”
Some Things To *Not* Say Or Do
Hafeez notes that it’s important to not invalidate your partner’s feelings. “Let them be sad, mad, hurt, and so forth,” she says. “If they don’t feel comfortable expressing themselves, they may just shut down and bottle up their emotions instead. Similarly, don’t pressure them into going out with friends or stepping outside of their comfort zone too quickly.” She says the key is to let them heal in their own time frame and show that you’re by their side. There are also some phrases to avoid saying, she explains, such as, “At least they lived a long life,” “They’re now in a better place,” “You got this, be strong,” and “I totally know how you feel.”
However, Payne says not to overthink it: If a partner is fearful that they might say or do the wrong thing — they’re worried about “what not to say,” they often say nothing or stay away. “Instead, it’s best to acknowledge that it can be very hard to know what to say or do for a grieving partner,” she says. “We haven’t been taught what to do, and it can be scary. We want to thank the courageous partners who want to help — but may not be sure how to — and give them the tools and language for what they can do vs. worrying about what they should not do.” That said, Payne suggests that supporters stay away from phrases that begin with the words “At least…,” like, “At least they lived a long life,” or “At least they’re not in pain anymore.” “These phrases may make your partner feel that you’re minimizing the deep pain they’re experiencing,” she explains.
Lee adds that actions can often speak louder than words. “When we say something that is intended to make the person feel better, 99.9% of the time, it doesn’t work,” she says. “It’s either based on misguided, outdated notions of grief, like ‘Just get over it.’” Or, if what you say is the kindest, most compassionate, most thoughtful thing, nothing feels quite right when you have lost someone you love. So even the person with the best of intentions may try to find the right words, but they still won’t ever really be the ‘right’ words because the griever is in so much pain.”
How Long Grief Lasts
Unfortunately, there is no particular grief timeline. “Everyone heals their own way and at their own pace,” says Hafeez. “You can reassure your partner that they will stop crying, and eventually, their routines will return to normal. Soon, they’ll laugh again without guilt, and going about their day will be easier.” However, some days will be more challenging than others, especially once holidays, anniversaries, and birthdays come up. In this case, you can let them know that, together, these occasions will be easier, says Hafeez. “Just continue to reassure them that, no matter how long it takes for them to move forward, you will be there for them.”
Payne, too, says there is no timeline for grief. “For as long as you’ll continue to love the person who’s died, you’ll grieve for them, and that’s okay,” she says. “This ‘ball in the jar’ analogy is one of the most common ones for illustrating how grief changes with time. While grief doesn’t go away, it does change over time and we grow around our grief, too.” While you may think the ball (grief) in the jar gets smaller, in reality, the jar around the ball gets bigger (and represents our growth regarding grief).
How A Couple Can Face Grief In A Supportive & Nurturing Manner
As difficult as grieving is, it also presents a profound opportunity to learn about your partner in a new way, and to deepen your relationship with them, says Payne. “Death, much like birth, is a life transition that can bring all kinds of new feelings to the surface,” she explains. “If you listen — without judgment — and provide support and companionship on your partner’s grief journey, you will deepen your understanding of each other. And you’ll learn tools to use again in the future as other difficult times come your way.”
Lee adds that the work of grief is never totally done, unfortunately. “There’s always more healing because there are always going to be these new and different triggers for the griever as you continue to move through life together,” she says. She adds that people can get really hung up on what to say/what not to say. “I think the most important thing that you can do if someone has lost someone they love is to do something,” she says. “This can mean sitting with the person in church, bringing them a meal, or offering to walk their dog or watch their children. Just do something — take an action.”
And she says if you are unsure of what to do — everyone’s sending flowers or dropping off food — do something that is authentic to that person and your relationship with them. “When my husband and I lost our pregnancy back in 2019, tons of people sent flowers, so many that we ran out of vases to put them in,” says Lee. “But one of my best friends sent me a gift box from one of my favorite stores in the world: Murray’s Cheese in New York City. She and I are big wine and cheese people, and have shared that a million times over the years. It was perfect. When we take these kinds of loving actions, that is when people feel less alone with their loss.”