In September 2019, Alain du Chemin was diagnosed with a brain tumour.
At the time, he was living with his partner of eight years, Paul Gazzard. The pair had met on Grindr in 2011 – Paul was such a novice to the app that he couldn’t get his profile picture the right way up, and Alain sent him a cheeky message saying he had neck ache from trying to look at his upside-down face.
“For some bizarre reason I thought it was hilarious, and we just got chatting, met up, and then the rest is history. Very quickly I moved in with him,” Paul recalls.
Their life together was a happy one, but after months of suffering with headaches and disorientation, Alain was told he had a tumour, and that it was terminal.
He was a pragmatic person, Paul says, and immediately started researching his options.
“As he was reading more and more about what the end game might be, he discovered a lot of things – that people with brain tumours, towards the end, may not have all their faculties, can’t speak properly, can’t do a lot for themselves, become really confused, and so on. And he decided at that point that wasn’t really something he wanted to go through.
“That’s when he started looking into the whole assisted dying process and what it entails.”
Assisted dying describes the act of a terminally ill person being prescribed drugs, at their request, that end their life. A UK parliamentary briefing uses the term to cover instances where the patient self-administers the drugs, and where healthcare professionals administer them on request.
By that time, Alain was living back in Jersey, where he was from originally. The problem was that assisted dying was illegal there, as is the case in most European countries.
One of the few places where assisted dying is possible is Switzerland. Many people from across the world flock to the country so they can die on their own terms.
It took a while for Paul to realise just how serious Alain was about dying in Switzerland.
“He started saying, ‘I want it to be a celebration, I’d like to have certain close friends go with me, we’ll have a great party before I go off’. It was quite a lot to take in.
“Previously I had no view on assisted dying at all. I mean, thinking about it, why would you unless you or someone you loved were in that situation?
“You could tell he was absolutely adamant this was what he wanted to do… I think what I struggled most with was timing, really. When do you know now is the right time to go?”
‘Laws must change to a more humane model’
In order to undergo assisted dying, you must be considered competent to make that decision at the time of death. That presents specific challenges for people with terminal illnesses like brain tumours – for Alain, it meant he would have to die when he was still relatively healthy.
“He was fully supported by me, close friends, his family – we knew the sort of person he was and if he had something in his head, it was going to happen.”
While Alain explored his options, he and Paul worked on making the most of their time together. On Valentine’s Day 2021, they got married with around 20 guests in attendance.
Shortly afterwards, Alain’s condition started to deteriorate rapidly.
“At that time, I think he was feeling things were changing quite a bit, and the planning really had to be kicked up a bit,” says Paul.
“We have a friend who’s a pilot and he was able to get a private plane to take us to Switzerland, which was pretty much one of the only ways during that time [at the height of the COVID-19 pandemic] that we were going to be able to get there.”
The cost of hiring a private plane was going to be tens of thousands of pounds – and it caused “an enormous amount of stress”.
In the face of all those pressures, they ran out of time. Alain reached the point where he would no longer be considered competent enough to choose to undergo assisted dying.
On 1 May, 2021, Alain passed away in a hospice after a period of rapid deterioration.
Alain never had the chance to go through assisted dying – but Paul says he might have if the law was more humane.
That’s why Paul is now a campaigner for better assisted dying laws. He’s working with Dignity in Dying, a campaign group that believes everybody should have the right to a good death.
YouGov polling shows there’s broad support in the UK for a change in the law. Three out of four people believe terminally ill adults should be allowed to choose when their lives draw to a close.
“It’s about choice,” Paul says.
“I think it’s only right people should have the option available to them.”
LGBTQ+ people can face unique challenges at the end of their lives. The article discusses some of the struggles they face and why they face them. Advance directives are the best way for LGBTQ+ individuals to make their end-of-life wishes known and to counteract discrimination.
Individuals who identify as LGBTQ+ statistically encounter discrimination and this does not stop when they face death and dying.
Biased blood relatives and medical personnel can be sources of end-of-life challenges for LGBTQ+ community members.
Having an advance directive may assist in ensuring a more dignified and respected dying process.
The end of life is a profoundly intimate time for the dying person and their loved ones. The dying process can strongly illicit emotions related to fear of the unknown and anticipatory grief. For lesbian, gay, bisexual, transgender, queer, and non-binary (LGBTQ+) individuals, the challenges can multiply.
What are some possible concerns?
When a dying person is not cisgender (identifying with the gender they were assigned at birth) or heterosexual, the end of life may become complex.
For example, family members who previously rejected their now-terminal LGBTQ+ relative may wish to visit to say their goodbyes. They may still hold biases against the sexual orientation or gender identity (SOGI) of the dying relative. Relationships that are already strained can add undue burden on the dying one and their close caregivers.
Culturally insensitive attitudes held by medical professionals can translate into micro-aggressions, withheld care, or abuse. Even people in legal same-sex marriages that have codified protections at the bedside are sometimes met with contempt.
The result could be that the non-conforming person may be denied the care, dignity, and support at the end of life every human wants.
Further difficulties for transgender individuals
Systemic and social prejudices that harm the transgender community persist and can follow them to the end of life. Again, the withdrawn relative who has not yet embraced the SOGI of their dying family member may arrive at the bedside, still deadnaming (using their birth name and not their chosen one), perpetuating an environment of perceived discord.
Medical workers are sometimes responsible for inequitable care provision when faced with patients and their bedside support system who are not cisgender or don’t fit a heteronormative presentation. Studies that contain evidence of this type of discrimination are now surfacing.
A supportive solution – advance directives
Advance directive creation acts as a vital process for formally stating exactly what a person envisions for their end of life. The term ‘advance directive’ is an umbrella term used for a group of formal documents that include a living will, a document naming one or more health care proxies, and organ/tissue donation documents (if so desired). It is not to be confused with a legal, financial will established with an attorney.
The living will
A living will spell out the detailed choices regarding what medical treatments a person would and would not want at the end of life. It communicates pre-planned decisions to all medical practitioners based on personal values. Also, a living will is what the chosen healthcare proxy will use as a guide in advocating for the dying LGBTQ+ person when they can no longer speak for themselves.
Each state has its own version. However, they all ask the same basic questions regarding medical procedures and interventions typical at the end of life. It guides medical providers in knowing whether or not to administer artificial hydration and nutrition as well as life-sustaining interventions such as a breathing machine or CPR.
Also, there is always space provided on the documents for writing personal statements and unique information to establish autonomy further. These addendums can be the key to receiving more personalized and respectful medical care. Appropriate pronouns, who one wants at the bedside, chosen name use, and more can be highlighted here.
What is a health care proxy?
A proxy is a person carefully chosen ahead of time to be the voice at the bedside when an actively dying person cannot express their wishes. This term is also known as a health care agent, patient advocate, medical power of attorney, or medical proxy (state-dependent). The proxy cannot override medical decisions if a person is conscious and competent at the time decisions are required.
It is recommended that more than one healthcare proxy be named in the advance directive. If one proxy is unavailable at a crucial time, having another designee who can step in can provide assurance.
Advance directives can be downloaded from the internet for free in every state. It may need to be notarized in addition to the necessary witness signatures. An individual’s primary care provider and all proxies must have a copy of the completed and signed documents. Providers can answer any questions to help make these personal medical decisions.
Advance directives are not only for those with a known terminal diagnosis. There is also the scenario of a sudden, catastrophic event that might lead to a critical care unit to consider. This now involves the forethought of younger, healthier individuals as well.
What may happen if no advance directive is available?
When a person is instantly unconscious and possibly dying related to an accident, essential decisions will need to be made immediately. Without a stated proxy, the closest blood relative will be legally elected as “next of kin” to make those choices. If that mother or father, sister or brother, is historically at odds with their dying LGBTQ+ family member, the situation has the potential for further disaster.
With an advance directive in place, wishes are already determined, and the supportive ally in the proxy role can guide the care desired and advocate for respectful treatment at the bedside. Having an advance directive may also prevent the need for guardianship imposed through the state probate court.
Ultimately, if no advance decisions are in writing, the stress of not knowing rests on those that care.
Every person over the age of 18 is encouraged to have advance directives in place, whether legally married, cohabitating, or single. They can provide additional protection of dignity the LGBTQ+ community asks for when it’s needed most. And, until more education is required for medical professionals in providing more culturally sensitive care, advance directives are another ally to add to the circle of support for the dying LGBTQ+ person.’
Before he met Charles Koehler—and before he married a woman, got divorced, and came out—Dennis Hostetler was a college student who needed money. In the summer of 1962 he began working in the W.R. Grace mine, cleaning the tools used to drag vermiculite ore out of the ground. The shiny, flaky mineral would be refined at the plant, and when heated, it would balloon into puffs that could insulate buildings. Libby, a town in northwest Montana, was a beautiful place, but Hostetler had bigger ambitions, so he took the $1,443.72 he’d made and got the hell out.
But pieces of Libby stayed with Hostetler, buried deep in the outer lining of his lungs. He unwittingly carried toxic mineral fibers from the mine to college in Missoula, to the Peace Corps in Tunisia, to Paris’ Left Bank, and to St. Louis, where one day, at age 67, he discovered he was dying. After experiencing fatigue, chest pain, and shortness of breath, Hostetler was diagnosed with mesothelioma, a deadly cancer probably caused by inhaling asbestos that tainted the vermiculite he mined. In 2009, a year after Hostetler’s diagnosis, the Environmental Protection Agency declared a public health emergency in Libby and initiated a massive cleanup effort that’s still ongoing. Hostetler had no illusions about what came next—he needed to put his affairs in order.
Death is an inevitable fact of life that most people prefer not to discuss. According to a 2012 survey by the California Health Care Foundation, 60% of Californians said that when they die, it’s very important to them not to burden their families with tough decisions. Despite that, more than half of the respondents hadn’t communicated their end-of-life plans with the people they wanted making decisions for them. Some were too busy with other things to think about it; others said thinking about dying made them uncomfortable. But having those conversations can make the experience better for the person dying. There’s less regret about what might have gone unsaid, and less anxiety and confusion for caregivers because they know their loved one’s wishes. Numerous studies have linked conversations about death to better, more peaceful deaths.
For members of the LGBTQ community, dying without the legal protections of a living will or power of attorney could mean spending their final days without the support of the people who love them. A 2010 study by the National Gay and Lesbian Task Force Policy Institute found that LGBTQ elders are twice as likely to live alone and four times less likely to have children than their straight counterparts. That means their caregivers are often friends, exes, or chosen family who aren’t always recognized by the medical and legal systems. “There’s no automatic protection in place to make sure that someone can choose the person that’s going to be making their [end-of-life] decisions,” says Kimberly Acquaviva, a professor of nursing at the University of Virginia who specializes in palliative and end-of-life care. “You have to put those things in writing.” Before same-sex marriage was legal, there were horror stories about families swooping in and making medical decisions that didn’t accord with people’s wishes. “Those things still happen,” she says.
A Better Way to Die
Hostetler met his partner, Charles Koehler, in 1984. While the two could never have prepared for how their relationship unfolded over the next two decades, they always had a plan for death. Before Koehler met Hostetler, he’d read the 1969 bestselling book Everything You Always Wanted to Know About Sex* (*But Were Afraid to Ask) and decided it would be better if he wasn’t gay. The book told him gay people led awful lives, an idea affirmed in an abnormal psychology class where he learned that homosexuality was in the Diagnostic and Statistical Manual of Mental Disorders.
If homosexuality was classified as a mental illness, then Koehler reasoned that it too must be a diagnosable disorder. But then Koehler actually met some gay men and realized their lives were just as varied as anyone else’s. Even then, it took years for Koehler to accept himself; when he did come out at age 27, he thought his life would remain solitary. “I had no idea what was possible,” he says. “I assumed that I would be basically closeted.” Both Koehler and Hostetler were hesitant when they met. Hostetler, who was older by a decade, had two daughters he still wasn’t out to. When Koehler moved in, Hostetler told the girls he was just renting a room. But in time they came out to Hostetler’s daughters and ex-wife.
When two of their lesbian friends asked them if they’d consider donating sperm so they could have children, both men obliged. At first the men agreed to just be “uncles” to the children, but eventually the moms wanted the boys to know who their fathers were. “We had to do DNA testing to find out who was whose,” says Koehler. “The boys were really excited for about five minutes and then they wanted to go outside and play games.” Koehler began volunteering in a program that provided support buddies to men living with HIV and AIDS. He watched a man die and then watched the man’s partner get thrown out of the home they shared. Though the house was owned by the man who died, there was no will to ensure his partner could keep it. “The family came in, took everything, kicked the kid out on the street,” Koehler says.
Afterward, Koehler and Hostetler—who were both healthy at the time—drew up documents specifying what should happen to their assets in case of death. Now, there are academics and organizations helping LGBTQ people make clear, concrete plans for death. In doing so, they’re modeling a better way to prepare for, think about, and embrace death. Sherrill Wayland, who directs operations at the National Resource Center on LGBTQ+ Aging, saw many of their older friends struggle to get the care and support they needed at the end of their lives. “It was really personal for me,” they say. “No one should die alone if they want support.” In their role, Wayland has helped create a series of guides to help LGBTQ people plan for serious illness and caregiving.
Sage USA, an advocacy organization for LGBTQ elders, is also pushing for cultural competency training in long-term care facilities. Compassion & Choices, a group that champions the importance of end-of-life planning, has LGBTQ-focused programs like Pride in a Box, which encourages people to take time during Pride Month to talk about how they want to die. These conversations can seem at once ghoulish and mundane: Do you want to be cremated or buried? Do you desire an open- or closed-casket funeral? What clothes would you like to be buried in? What pronouns should appear in your obituary? “LGBTQ people have realized that if we don’t make a plan, things are probably going to go sideways because other people won’t be looking out for us,” says Acquaviva, who helped develop an LGBTQ-inclusive curriculum for The Conversation Project, an organization that helps people discuss their end-of-life plans. “We have to figure out ways to look out for ourselves.”
Because Hostetler had an amalgamation of chosen and genetic family members, he wanted to make sure everyone was on the same page. He organized his will and called his daughters, his ex-wife, the sons, and their mothers. Hostetler was adamant that he wanted to die at home, so he arranged for hospice care. Instead of hiding his identity, Hostetler informed his health care providers that he was gay and that Koehler was his life partner and caregiver. Koehler says that without exception, every single person was supportive and respectful of their relationship.
In the final two weeks of Hostetler’s life, a hospice nurse suggested setting up his bed in the living room so he wouldn’t be alone. His eldest daughter and her family moved in and traded shifts with Koehler and a hospice nurse. His nurses provided massage and music therapy to make him more comfortable. Hostetler was sedated, hovering at the edge of their everyday routines. Finally, on New Year’s Eve 2010, his daughters and his life partner surrounded his bed and held hands as he took his last breaths. Koehler checked his pulse and said, “I think he’s gone.” Koehler describes the whole experience as peaceful. Having months to accept that Hostetler would die helped make the process less traumatizing for everyone.
“In a strange way it was both sad and yet somehow comforting at the same time knowing that he died being surrounded by us at his home, just as he wished,” Koehler says. But not all LGBTQ patients receive such affirming care: A 2020 survey published in the Journal of Palliative Medicine found that nearly one-quarter of health care providers witnessed discrimination against LGBTQ patients in palliative care settings and nearly 30% of the respondents reported witnessing discrimination against LGBTQ spouses, partners, or people whom the patient had legally designated to make care decisions for them.
Preparing for the Inevitable End
Experts like Acquaviva and Wayland say that health providers need to take time to understand the barriers that create health inequities in the LGBTQ community and undergo cultural competency training to avoid making the same mistakes. Because LGBTQ families are more likely to be families of choice, providers need to be sensitive to those dynamics and spend time learning who is part of a patient’s support system instead of automatically deferring to genetic family members. There are also simple ways to acknowledge the range of human gender and sexual identities, such as including nongendered pronouns on forms, asking for patients’ pronouns and using them correctly, and including LGBTQ-affirming language in nondiscrimination clauses.
Those steps may seem like small gestures, but they’re important signals. If an organization doesn’t commit to doing something as minimal as adding inclusive language to a statement, says Acquaviva, then it’s reasonable to expect that they won’t treat a patient with the dignity they deserve. Acquaviva has both written about and experienced this discrimination: She and her wife talked extensively about their plans when her wife was diagnosed with ovarian cancer in 2019 and ultimately decided to use hospice care to help her die comfortably. But then they discovered that none of the hospice services near their Virginia home included LGBTQ-affirming language in their nondiscrimination statements. Despite the fact that both women were experts in end-of-life care, they faced death without the support of hospice because they felt they wouldn’t receive respectful care. Acquaviva was the one managing her wife’s pain meds, bathing her, and making sure she didn’t get bed sores.
There’s no single definition of a good death. Not everyone knows when their death is coming and not every death can follow a specific plan, but every death can be expected and discussed ahead of time. “We all want to imagine we’re gonna live a really long time, and it’s human nature to imagine that everything’s gonna be OK, but the reality is 100% of us are going to die,” Acquaviva says. Have the conversation—even if it’s awkward, uncomfortable, and hard.
Now, more than a decade later, Koehler remains an active retiree. He’s single but he isn’t alone. He’s the vice president of PrimeTimers Worldwide, a large social group for older gay, bisexual, and transgender men. On Sundays he catches up with Hostetler’s daughters and their mom over Zoom, and when the younger daughter needed surgery, he helped with child care. “Having grandkids is something that I never dreamed of as even a remote possibility,” he says. “It never even crossed my mind at all.” His documents are in order and he encourages his peers to make end-of-life plans. But while he’s still here, he’s keeping busy, tending to the life and family he and Hostetler built together.
Who would you call to bring you chicken soup? For many LGBTQ seniors who are alone, that’s no easy question.
By Steven Petrow
Who would bring you chicken soup if you were sick? For most people of a certain age, that’s easy — a spouse or an adult child would step up.
For many LGBTQ people, however, it’s not a simple question at all.
“Many [would] have to think really hard about this,” said Imani Woody, an academic and community advocate who retired from AARP to start an organization serving LGBTQ seniors. She said chicken soup is a stand-in for having a social support system, which many of us need.
“Build your village right now,” Woody said.
A few years ago, I would have said that my then-husband would be my primary caregiver if I became ill or disabled. I’d have done the same for him. Now I’m 65 and divorced, and this issue — who can I call on? — is top of mind for me.
It’s also a serious concern for many LGBTQ people I know, whether single or partnered. Take one friend of mine, for example, who is 60 and a single gay man. He took care of his dying father last year (as I’d done four years earlier with my parents). During his dad’s lengthy illness, we talked about two questions that terrify us (and I don’t use that word lightly): “Who will take care of us when we need help?” “Where will we go when we can no longer take care of ourselves?”
Of course, aging is an equal opportunity challenge for straight and queer people alike. But in interviews with more than four dozen LGBTQ people, singled and partnered, I heard repeatedly about the anxieties faced by queer elders.
SAGE/Advocacy & Services for LGBT Elders, the National Resource Center on LGBTQ+ Aging, and Healthypeople.gov document the health challenges LGBTQ people face. We’re twice as likely as our straight counterparts to be single and live alone, which means more likely to be isolated and lonely. We’re four times less likely to have children. We’re more likely to face poverty and homelessness, and to have poor physical and mental health. Many of us report delaying or avoiding necessary medical care because we face discrimination or mistreatment by health-care providers. If you’re queer and trans or a person of color, these disparities are heightened further. (There are about 3 million LGBTQ people 50 and older.)
“It’s a very serious challenge for many LGBTQ older people,” said Michael Adams, chief executive of SAGE. “The harsh reality is that there just aren’t as many opportunities for older LGBTQ folks when it comes to creating, building and maintaining social connections. … We’re lacking the personal connections that often come with traditional family structures.”
In part, that’s because LGBTQ people have often found themselves rejected by family, friends and community in their younger years because of their sexual orientation or gender identity. To boot, we could not legally marry until 2015, when the Supreme Court ruled in favor of marriage equality. But even married queer folks can end up alone after a divorce or death, which often brings different challenges than those faced by straight people facing the same life-changing events.
An 80-year-old lesbian put it to me this way: For straight people, “If you were to go into a nursing home, you would not have to worry that people taking care of you did not approve of your orientation, or that the facility would not take you because they were a ‘religious’ community. These are real issues for the queer community.”
Another friend tells me he has no plans for the future except a guest room and a second bathroom. And another said he hopes by the time he needs care, there will be an LGBTQ senior community in his city. “Otherwise, I have nothing,” he said.
A former colleague of mine, a lesbian, told me she worries about the cost of senior living: “I dread it all. I won’t have any dough then, so it’s really up to fate.”
Senior living communities, which provide support for the aging, can be less than welcoming to those who are LGBTQ. Staff, some of whom have traditional views on sexuality, gender identity and marriage, also pose challenges to LGBTQ elders since many facilities lack the training and policies to discourage discrimination, which can lead to harassment, Adams said.
Patrick Mizelle, who lived in Georgia with his husband, told Kaiser Health News several years ago that he worried about how “churchy” or faith-based their local options seemed, and feared they would not be accepted as a couple. “Have I come this far only to go back in the closet and pretend we are brothers?” he asked.
Rather than take that risk, they moved across the country to a queer-friendly senior living complex in Portland, Ore. They are among the lucky ones in that they could afford both the move and the cost of this domestic situation.
How do you find a welcoming LGBTQ senior living arrangement? SAGE publishes a comprehensive list of long-term care facilities (organized by state and city, along with level of care) that it has found to be welcoming.
“We also have resources about the kinds of questions that a consumer can ask to figure out if a provider is paying attention to the steps that need to be taken to become more welcoming to LGBTQ older adults,” Adams said.
What else can LGBTQ people do to find connection, to find a tribe? Many suggest the importance of developing intergenerational friendships early on in life, even as early as your 30s and 40s. Elders can impart wisdom and experience to younger LGBTQ people, who can provide help in return; as decades pass, the young ones become the elders.
The Harvard Study of Adult Development, which began tracking more than 238 men (regardless of sexual orientation) in 1938 and continues to this day, has reported consistently that relationships are the critical ingredient in well-being, particularly as we age.
Put simply, the more connected we are, the more likely we are to be healthy and happy. To paraphrase Imani Woody: Start building those bridges.
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.”
AMA CXO Todd Unger discusses caring for LGBTQ seniors and addressing disparities during end-of-life care with Carey Candrian, PhD, an associate professor at the University of Colorado School of Medicine in Denver.
0:00 AMA Moving Medicine for June 21, 2022 1:04 What disparities affect LGBTQ older adults, specifically? 2:04 What is driving these disparities in LGBTQ older adults? 4:06 How have previous stigmas taken a toll on LGBTQ seniors mental health? 5:35 Why are LGBT older adults at particular risk for receiving inequitable end-of-life care? 8:17 How is end-of-life care different from other areas of health care where we don’t see these huge gaps? 8:43 What are the drivers of this discrimination? 9:53 What kind of data would be helpful—and how can it best be collected by care providers? 11:46 What do you mean by “breaking the script” when it comes to communication with LGBTQ older adults? 13:30 How would you like to see end-of-life care evolve and what do we need to do to get there?
When Desiree Celeste begins to feel emotional while discussing the death of their grandmother, they refuse to apologize — instead, they make space to explore and feel the depths of their grief.
“I’m not sorry, actually. I will be mourning her for the rest of my life,” said Celeste, who uses they/them pronouns.
Celeste said that their grandma “always was and always will be” their best friend. When she died after a three year stay in hospice, the emotional care Celeste and their family received was lacking.
“Her death almost killed me, that’s how deep my grief was,” they said. “Don’t get me wrong, the hospice workers were amazing, they did a great job. But I was still left feeling like I needed more. I needed someone outside of that group that could hold space for me and my grief.”
Now, years later, Celeste has built themself into the companion they sorely needed in those dark moments.
Celeste works as a death companion. Also known as a death doula or a death midwife, death companions dedicate themselves to supporting people as they experience grief and death. They can help make funeral arrangements, answer questions about death and dying, organize euthanasia for pets, help process grief years after an event and much more.
Although Celeste officially started their work in 2021, they said they’ve been doing some forms of death companionship for most of their life.
“At pet stores I used to take home animals that smelled like death … that I knew would die. I took them home so I could care for them and make sure they didn’t die alone,” they said.
But everything truly came to a head when Celeste lost their grandmother. On top of the grief of losing their best friend, they never had a chance to come out to her as nonbinary, which added a unique and terrible pain to Celeste’s experience.
“I never came out to my grandma, she never knew who I really was,” they said.
Influenced by that pain, Celeste is a death companion focused on providing services to other LGBTQ+ individuals, for whom death and grief can be exceptionally difficult.
“I worked with a client once to help them organize an at-home euthanasia for their pet. They identified as transgender, and were terrified of reaching out to veterinarians because of their fear of being mis-gendered,” Celeste said. “Talking to the vet, picking up the ashes and even getting the body cremated are all opportunities where they could have been mis-gendered, so I acted as a barrier and shielded them from that pain.”
In another instance, Celeste worked with another transgender client who was the primary caregiver for an individual who had died. Living in a conservative and rural area, it was unsafe for the client to come out, and so they would be facing funeral directors, doctors and other professionals as someone they weren’t.
“When someone is experiencing grief, they’re already so fragile. It’s not fair to have to hide who you are while going through that, so I was there to offer emotional support and be someone who knew what was really going on,” they said. “It’s really important to have someone to explore those feelings with without hiding anything.”
One of the most important aspects of their work is the unique variety of care Celeste offers as a death companion.
“The important thing to remember is that it’s not either/or — you can work with hospice and social workers and still need the support of a death companion,” they said. “When people are experiencing the anxiety that comes with death, they need to feel safe. I’m here to offer a vast and flexible variety of services to help with that.”
Starting in February, Celeste began to offer virtual processing spaces for those who identify as queer. The goal of those spaces, they said, is to offer space and time to talk about death and grief in all its forms.
“When I started my work, I wasn’t focusing on queer clients, but over time I think my clients began to see a piece of themselves in me, and they just started to gravitate towards me.” they said. “A death companion’s care is truly unique, I strive to meet people wherever they’re at.”