Queering the Good Death

When it comes to protecting chosen family, LGBTQ couples face unique struggles.

By Sara Harrison

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.

Charles Koehler, wearing a blue polo shirt, holds a black-and-white photo of his late husband, Dennis Hostetler, at age 68. He is standing outdoors, with trees and foliage visible in the background.
Charles Koehler holding a photo of Dennis Hostetler at age 68.

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.”

Charles Koehler, in a blue polo shirt, stands next to his son Spencer, age 28, wearing a red T-shirt. Both men are smiling, and standing outdoors with trees and foliage visible in the background.
Charles with son Spencer, age 28.

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.

Three framed photographs sit on a wooden shelf. The photos show, from left: Charles, age 45 (left) with Dennis, age 55 (right) holding their sons Connor, age 2 (left) and Spencer, age 4 (right) on Christmas 1997, in front of a decorated Christmas tree. Center: Charles, age 45, with Dennis, age 55; both wearing patterned sweaters and smiling broadly. Right: Jocelyn, Dennis’ daughter from a previous 12-year marriage, smiles while holding her two children; one an infant, and one a toddler with their arms around their sibling.
Left: Charles (left), age 45, with Dennis (right), age 55, holding their sons Connor (left), age 2, and Spencer (right), age 4, on Christmas 1997. Center: Charles, age 45, with Dennis, age 55. Right: Jocelyn, Dennis’ daughter from a previous 12-year marriage, with her children.

“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.

Charles shares drinks with members of his local PrimeTimers social group, of which he was founding president, on the back patio of Just John Night Club in St. Louis, Missouri. He wears a red, white, and blue-checked shirt, glasses, and holds up a pint of beer to toast with a friend who is off-camera.
Charles shares drinks with members of his local PrimeTimers social group, of which he was founding president, on the back patio of Just John Night Club in St. Louis, Missouri.

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.

Complete Article HERE!

Deadnaming, misgendering and more

— Chicago’s trans and nonbinary community grapples with end-of-life complexities

Elias Renaud, seen outside St. James Cathedral in Chicago on Nov. 12, is a transgender male and has drawn up a living will.

By Adriana Pérez

When COVID-19 first hit Chicago in 2020, essential worker Elias Renaud texted his sister and a good friend from the bus on his way home from his job at a grocery store.

“If something happens to me, this is where I want things to go, this is what I want done,” Renaud, who uses the pronouns he/him, remembers telling them.

The 44-year-old transgender man, from Edgewater, drew up a living will with the cautious hope that when he dies, his body would be treated with dignity.

“I think by the time I die, there will be a lot of people doing death work that will have had experience with trans bodies or will be trans people themselves, or nonbinary people themselves,” he said.

For trans people like Renaud, as well as for nonbinary people, life comes with its own set of difficulties. But so does death.

Elias Renaud, a transgender male from Chicago's Edgewater neighborhood, has drawn up a living will.
Elias Renaud, a transgender male from Chicago’s Edgewater neighborhood, has drawn up a living will.

As the death care industry grapples with changing cultural attitudes and questions on how to respectfully lay to rest those who identify as trans or nonbinary, a South Side-based LGBTQ community center called the Brave Space Alliance is set to launch the final portion of its Dignity Project this month, completing an umbrella of services that aim “mainly for violence prevention, and to perpetuate dignity in our communities,” said interim CEO Jae Rice, whose pronouns are he/they.

The project includes $400 microgrants for trans people in Chicagoland, a name change clinic and a funeral fund that will give up to $6,000 to cover funeral and burial costs for trans people. The funeral fund is the first of its kind in the country, they say. And beginning this month, Rice said, the Dignity Project will be providing living wills for trans folks in the area as well.

“So at the time of their death, they will have something that’s on record to show how they want to be buried, how they want to be presented, what they want to be buried in, their name that they want to be called — all that stuff,” Rice said.

Multiple conversations with experts unearthed how end-of-life issues become more pronounced for trans and nonbinary people, including deadnaming, misgendering, gendered death care and legal documentation, and how they play out in various institutional settings: funeral homes, the medical examiner’s office, the media and more.

“Deadnaming refers to when you refer to a trans or a nonbinary person by a name that they no longer go by. Often this is their birth name, or it may be their legal name. And this happens either on purpose or accidentally — intention sometimes doesn’t matter,” said Aster Gilbert, manager of training and the public education institute at Center on Halsted, a community center that advocates for LGBTQ health and well-being.

Misgendering similarly refers to when a person is referred to as a gender that they do not identify as. A trans or nonbinary person’s lived name and gender might not match their legal name and gender markers because of what constitute expensive and time-consuming legal transitions, and the anxiety and emotional distress that publishing one’s name under a newspaper of record may cause.

“If there’s a person who was found (dead) and you only have their legal documentation, that may not reflect who that individual actually is, because we’re all required to have legal state and federal documentation that may not have anything to do with our lived realities,” said Gilbert, whose pronouns are she/they.

In a statement to the Tribune, the Cook County medical examiner’s office said the office “treats every decedent in our care with dignity and respect. The loss of a loved one is tragic in itself. When a transgender person dies without having updated official records, their loved ones can face additional challenges that make the loss even more painful.”

That being said, the medical examiner’s office follows the direction of the Illinois Department of Public Health. “The decedent’s gender is reported on their death record or death certificate as the person was officially recorded while alive,” the statement continued. “So, if she was recorded, for example, as female on official documents (i.e. birth record, driver’s license) then that is how she must be recorded at death … We are very sensitive to the concerns of transgender persons and their loved ones, and do our best to respect their wishes to the extent that the law allows us to do so.”

In 2021, the Illinois Vital Records Division of the state health department added a new option to its system: an “X” gender marker in death certificates, which prints as nonbinary.

But though the gender markers in passports and Illinois birth certificates also allow people to choose a gender-neutral option, according to Illinois Legal Aid Online, that is not yet the case with driver’s licenses. Although Gov. J.B. Pritzker approved a measure in 2019 to include nonbinary gender markers on driver’s licenses and state ID cards, the new option won’t be available until the secretary of state’s current technology vendor contract ends in 2024.

Rice said that Brave Space Alliance and Southsiders Organized for Unity and Liberation will work with the Cook County medical examiner’s office and funeral homes to make sure trans people are not misgendered or deadnamed during end-of-life care.

“That is something that our community doesn’t have the pleasure and privilege to think about, is after death care. We’re just trying to survive right now,” Rice said. “The launch of the Dignity Project is to instill dignity while you’re here. And after death as well.”

Death work is necessary, especially for the trans community, said Phoenix Kelley, a death doula based in Jackson, Michigan, whose pronouns are they/them.

“Many funeral directors will go with the family of origins’ wishes, which often means that a trans person is misgendered, deadnamed, dressed as the gender that they did not identify with during their viewing and listed like that in their obituary,” Kelley said. “So one of the things that my work is trying to do is to normalize thinking about what you want your death and after death to look like.”

Kim Sabella, the funeral director at Wolfersberger Funeral Home in O’Fallon, Illinois, near St. Louis, said she encountered a situation recently in which the parents referred to their child who had just died with she/her pronouns, whereas some of the deceased person’s friends and peers used they/them pronouns to refer to them. So, she had to take a step back and confirm what pronouns the decedent preferred in life.

“The bigger issue here is how we all, in our workplaces, need to be more sensitive and more aware. And so not be afraid to just sometimes simply ask the question,” Sabella said. “I think that we just have to stop making assumptions about everybody but especially people that are already disenfranchised … We just have to be kinder humans. And I just think that’s just more important than ever before. And especially when we encounter (others) in the midst of grief and loss.”

Kelley, the death doula, strongly recommends that trans and nonbinary people create an end-of-life care document, naming someone specific that has permission to make medical decisions, and to get that document signed and notarized so that it’s a legal document.

“Even before I started doing any training to be a death doula, I knew that preparing a will or some kind of document for your end-of-life is really important,” they said.

The Illinois Department of Public Health offers online resources to those looking to prepare an advance directive, designate a health care proxy or draw up a living will.

At the Center on Halsted, Len DeWilde of the Transmasculine Alliance Chicago does a workshop about the legal steps trans and nonbinary people can take to preserve their own identity in the event of death. This includes sharing information about the different forms and designations that can be filled out, “especially if your next of kin are either not aware of your gender identity, wishes, or you’re afraid that they would actively try to kind of undo it in your death,” said DeWilde, whose pronouns are he/him. The next workshop will likely be held in December or January, he said.

But for some, delving into these documents can be daunting.

“The main thing that I think about is how I’m treated now, versus how I’ll be treated once I pass on,” says Sydney Kamuda, a 25-year-old nonbinary artist. “My only hope is that I have people who are around after me who can advocate for me.”
“The main thing that I think about is how I’m treated now, versus how I’ll be treated once I pass on,” says Sydney Kamuda, a 25-year-old nonbinary artist. “My only hope is that I have people who are around after me who can advocate for me.”

“The conversations surrounding what I would like to happen once I’m gone have been happening for a while, but in terms of really putting that onto paper — I think that’s where a lot of the fear comes into it,” said Chicagoan Sydney Kamuda, a 25-year-old nonbinary artist whose pronouns are they/them. “It’s another fearful idea that you are entering into a space where, again, I’m going to have to explain my pronouns and why I look a certain way.”

One of the reasons death work is necessary, Kelley said, is because of the rates at which trans people — especially trans people of color — are killed.

“We have this sort of this community knowledge that it’s very possible for us to die and especially to die suddenly, but taking the time to make those preparations can be scary,” Kelley said. “Even for me, because it makes it feel more real.”

According to the Human Rights Campaign, at least 32 transgender people have been fatally shot or killed violently in the United States in 2022 so far. In Chicago, at least two transgender women have been killed, including Martasia Richmond in June and Tatiana Labelle in March.

“We say ‘at least’ because too often these stories go unreported — or misreported,” the Human Rights Campaign notes on its website. “In previous years, the majority of these people were Black and Latinx transgender women.”

Since the Human Rights Campaign began tracking fatal violence against trans people in 2013, it has recorded 12 deaths in Chicago, all of which have been Black transgender women.

Deadnaming and misgendering trans people, Rice said, translates into not having an accurate count of trans deaths and a consequent inability to fully understand the violence trans folks face — “because so many trans deaths are not labeled trans deaths.”

“But when we don’t know that these people who are dying are actually trans folks, then how are we going to get toward any sort of actual liberation?” Rice asked.

Nonbinary artist Kamuda, who was 16 years old when their father died of complications from lung cancer, said this close experience with death has made them think about their own mortality. Death, they said, is one of the singular unifying factors in everybody’s lives.

“The main thing that I think about is how I’m treated now, versus how I’ll be treated once I pass on,” Kamuda said. “My only hope is that I have people who are around after me who can advocate for me.”

Complete Article HERE!

The anxieties of growing old when you’re LGBTQ

Who would you call to bring you chicken soup? For many LGBTQ seniors who are alone, that’s no easy question.

A person holds an umbrella in the rainbow flag colors in the annual Gay Pride Parade, part of the Durban Pride Festival, on June 29, 2019, in Durban, South Africa.

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.

SAGE also offers training to staff members at facilities that provide elder care, and has partnered with the Human Rights Campaign, the national LGBTQ lobbying and advocacy organization, in launching the Long-Term Care Equality Index, which sets out best practices to help make these facilities welcoming to the LGBTQ community. More than 75 facilities have made pledges to abide by these best practices. AARP also provides a list of affordable LGBTQ-welcoming senior housing.

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.

Recently, the Modern Elder Academy, which refers to itself as a “midlife wisdom school,” and the founders of Death Over Dinner, launched a program called “Generations Over Dinner” expressly to connect people of all ages.

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.

Complete Article HERE!

Why End-of-Life Conversations Can Be Difficult for Sexual and Gender Minority Patients

Carey Candrian, PhD, helped lead a study to understand how fear and discrimination affects advance care planning.

by Greg Glasgow

Advance care planning — thinking about what kind of care you want and whom you want by your side at the end of your life — can be difficult under any circumstances. But for sexual and gender minority (SGM) patients — including individuals who identify as lesbian, gay, bisexual, asexual, transgender, queer, or intersex — those conversations are often made even more difficult due to stigma, fear, and discrimination.

Carey Candrian, PhD, associate professor of internal medicine at the University of Colorado School of Medicine, is senior author on new research, published in JAMA Network Open, that finds that SGM patients’ experiences of discrimination affect their selection of clinicians and cause concern about whether their end-of-life preferences will be honored.

Candrian and her fellow researchers collected survey data from SGM and non-SGM participants and conducted qualitative telephone interviews with SGM participants across the country, asking them about their end-of-life discussions with clinicians.

“These conversations are hard for everyone, because you’re talking about things like death and dying and serious illness and diagnosis,” Candrian says. “When you add in all these other factors that we know exist for SGM people — less likely to have a traditional family, more likely to have experiences with discrimination or mistrust in the health care system — it makes those conversations even harder. We’re really trying to really understand what is happening and how these conversations impact it.”

Fears of disclosure

Advance care planning discussions can happen at any stage in a patient’s medical journey, not just when they are diagnosed with a serious illness. Doctors may ask the patient’s preferences on care measures such as ventilators, CPR, and artificial feeding, and whom the patient wants to speak or make decisions for them if they are unable to speak for themselves. Those conversations are often difficult for SGM patients who are not in heteronormative, legally recognized relationships or who have not disclosed their sexual or gender preferences to their parents or siblings.

“It can be a double bind — they don’t feel comfortable in the health care system, and they also are not comfortable disclosing it to their family,” Candrian says. “The big tension that we found is, ‘How can I actually have a meaningful conversation if I am so worried about disclosing this core part of myself in terms of who I am, who I need by my side, and what I want?’ How can you ensure they’re getting the care that they need if they can’t disclose this critical information?”

Part of that worry for SGM patients is making such a disclosure part of their medical record, where it can be seen by other doctors if the patient has an accident or needs emergency care out of state. Many survey respondents had experienced discrimination based on their gender or sexual identity in other aspects of health care and were reluctant to share that information in care planning discussions.

Critical conversations

The paper notes that “more SGM-specific patient-centered care might better support these discussions within the health care system,” and that clinician sensitivity training may also help as well. Other paths to more constructive conversations could include indicating support for SGM patients — through a rainbow flag or other means — and changing standard questions from, for example, “Are you married? Do you have kids?” to “Do you have a partner? Do you live with anyone?”

“Several participants had really great ideas on how to improve these processes in terms of how to find forms and how to make them more accessible for people who don’t fit the standard checkboxes,” Candrian says. “We need to collect this information in a way that doesn’t perpetuate discrimination, but actually opens the door to having a really critical conversation with SGM people.”

The study data were collected between October 2020 and March 2021, and the authors note that in the wake of the Supreme Court’s decision that overturned Roe v. Wade and concerns about the future of the legal status of same-sex marriage in the U.S., the fears and concerns expressed by SGM participants about advance care planning may be more pronounced now and in the future.

“Now, perhaps more than ever, we need to bring more voices into the conversation around advance care planning than have been included before,” says lead and corresponding author Amanda Reich, PhD, MPH, an investigator at the Center for Surgery and Public Health at Brigham and Women’s Hospital in Massachusetts. “Clinicians have the opportunity to re-open how we talk about end-of-life care to be more inclusive and to understand why our patients may be fearful or hesitant to have these critical and deeply personal conversations.”

Complete Article HERE!

How to have sex with someone new for the first time after your partner dies

Losing your partner, the person you love and maybe planned to spend the rest of your life with, is one of the worst pains imaginable.

By

The shock may leave you reeling in disbelief, and then the weeks, months and years that follow will be a difficult, painful journey through the many ups and downs of grief.

However, there may come a point after your partner dies that you feel ready to be intimate with someone again.

This may be a purely physical, sexual thing, or maybe you find yourself falling for someone with a deeper, emotional connection. When this happens is different for everyone. There is no ‘right’ amount of time to wait before connecting with somebody new. And meeting a new person or having sex with someone else doesn’t mean you are no longer grieving, or care any less about your loved one.

However, having sex with somebody new after your previous partner has died inevitably throws up complex and challenging emotions.

‘Loss changes you and grief takes you to unknown places where the future feels uncertain,’ says Corinne Laan, a grief specialist and author of The Art of Grieving.

‘The key to embracing a new partner in your life is by getting to know the changed person you have become since the loss. Give yourself the space you need to explore the new you first.’

Corinne believes that even though the life you once had changes forever after loss, you can still live a joyful life.

Take your time

‘There is no rush to get intimate if you do not feel like it,’ says Corinne. ‘Intimacy with a new partner can take time and in the case of a traumatic loss you may need even more time. Take all the time you need to explore this new relationship.

‘If you do feel sexual desire, embrace the fear and doubts with self-love and compassion. You can still grieve the loss of your partner while embracing this new relationship.

‘Sadness and joy can co-exist.’

It’s normal to think of the person you lost

When you are with your new partner, you may think of your past loved one. Corinne says this is completely normal because the love you once shared is still there.

‘Love lives on,’ she explains. ‘Try to relax, breathe, calm your mind and be present in the moment.’

She adds that healthy communication is essential when building a new relationship after a loss.

‘Express what you need emotionally and physically from your new partner and listen to what your partner needs from you by having an open, respectful and honest talk,’ she adds. ‘Communicate with compassion.’

Be kind to yourself and seek help

If you feel resistance when it comes to intimacy, Corinne says it’s important to explore the reason why and the emotions and feelings behind it.

‘Get help from a coach or counsellor to help you move past the obstacles you are experiencing,’ she suggests.

Let go of the guilt

‘Guilt at moving forward too fast is very common and normal as you may feel you are betraying the memory of your loved one,’ says Corinne. ‘Let go of the guilt.’

She adds that keeping the memory of your loved one alive while embracing a new relationship can be tricky, especially when it comes to anniversaries and holidays.

Corinne says: ‘The key here is to do what feels right for you and find ways to blend memories of the past and new experiences into your life.’

Keep working on your grief

‘This is a major life transition and making time and space to reflect on the loss and working through your grief is crucial,’ says Corinne.

‘Keep working on your grief as it will help you gain greater awareness of your strength and ability to build a future you did not think was possible.’

Others may have opinions of what you should do, but Corinne reiterates that it is important not to allow these opinions to influence your decisions.

‘Doing what is right for you is vital when building something new with someone new,’ she adds.

Complete Article HERE!

End-of-life care considerations for LGBTQ older adults with Carey Candrian, PhD

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?

The Denver ‘death companion’ making space for queer grief

Desiree Celeste works in Denver as a death companion focused on helping the LGBTQ+ community process death and grief.

by Corbett Stevenson

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. 

Celeste’s trusty notebook, covered in stickers discussing death and dying. 

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.”

A promotional flyer created for Celeste’s Queer Grief Gatherings. 

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.”

Complete Article HERE!