Good Grief Gives Grief a Home For the Holidays

A portrait of Marc (Daniel Levy) and his friend Thomas (Himesh Patel), “painted” by Marc in ‘Good Grief.’ Kris Knight was the shadow painter on the film.

by Laura Zornosa

Art is the linchpin of Good Grief, a warm dramedy set in the heart of winter, out in theaters on Dec. 29 before coming to Netflix on Jan. 5. It’s a film that feels like snowfall: a gradual accumulation of a blanket of muted comfort. Dan Levy, who wrote, directed, and stars in the film, plays Marc, who is guided through grief by his best friends, Sophie (Ruth Negga) and Thomas (Himesh Patel) in the wake of his husband Oliver’s (Luke Evans) death. An artist who used to paint, Marc finds his way back to the canvas as he heals.

The Marc we meet at the beginning of Good Grief is diminished—he stopped painting after his mom’s death, finding it too painful. Before Oliver died, Marc still made art, illustrating his husband’s books. But he shrank himself to magnify his husband. Now, he’s lost his partner. The people around him encourage him to pick up the paintbrush again.

We learn over the course of the film that Marc and Oliver’s marriage was far from perfect; Marc holds his complex emotions about Oliver’s death at arm’s length, watching them circle the drain, but never quite emptying the bath water. First Thomas, and then a lover, Theo (Arnaud Valois), nudge him toward art to help him heal.

“If you have the ability to write or to paint, sometimes that’s all you can do,” Levy says in an interview. “It might not look like the sobbing, fall-down-the-wall, on-the-floor hysteria that we’ve come to equate with grief or with loss. And that’s OK.”

Daniel Levy directs on the set of ‘Good Grief,’ with a painting by Kris Knight behind him.

Levy himself is not a painter. When he got the green light for the film, his first move was to solicit the help of one of his favorite artists, Kris Knight. Levy called Knight, whose work he’d been collecting for a decade, and asked him to be a shadow painter for his character.

Just a week before Levy’s call, Knight had a conversation about the 1998 Alfonso Cuarón movie Great Expectations, in which the Italian contemporary artist Francesco Clemente painted for Ethan Hawke’s character, Finn. Knight was 18 when Great Expectations came out, and it inspired him to pursue art. Now it was his turn to paint the art that we see onscreen.

“It was important that the art stand out, that the portraits have a very distinct point of view,” Levy says. “The work had to reflect that emotionality, so that the audience can understand why he took a break from it and why he then would return to it.”

Knight’s work slots neatly into Marc’s character, interlocking like one had a notch carved for the other. Like Marc, Knight has illustrated book covers. (Most recently the forthcoming Henry Henry by Allen Bratton, a queer reimagining of Shakespeare’s Henriad.) “His romantic paintings and portraits are simultaneously intimate as they are remote,” reads Knight’s website. “Halcyon queer moments have impact without being sensationalized.”

A portrait of Theo (Arnaud Valois) “painted” by Marc (Daniel Levy) in ‘Good Grief.’ Kris Knight was the shadow painter on the film.

Knight tries to paint different modes of masculinity that he connects with, he says. He likes softness and darkness, and he loves humor and history. Melancholy seeps onto the canvas, as does most of what he absorbs, consciously or otherwise. Something similar happens for Marc in the film: He leaves the suffocating comfort of his home in London, where he lived with Oliver, to paint in the sharper, starker seaside of Kent.

“With my art, it comes from a queer lens, and I can’t do anything about that, just because that’s who I am,” Knight says. He interviews those who sit for his portraits, usually other queer creatives, and one of his main questions is about their coming out experience. It binds them together over generations and social and economic backgrounds.

Knight estimates that he made 15 to 17 pieces for the film, many of which are on display in a final, cathartic gallery scene.

A portrait of Oliver (Luke Evans) “painted” by Marc (Daniel Levy) in ‘Good Grief.’ Kris Knight was the shadow painter on the film.

“I connected with this story in terms of it being basically a new look on grief, and it’s a queer lensing of grief,” Knight says. “And that’s something I haven’t seen in film before. Especially with the character dynamic of Oliver and Marc: I see that in straight film, and I see that in straight couples, where one partner kind of lives for the other.”

Knight and Levy both lost grandparents during the pandemic, a window of time that even further distorted our already slippery understanding of grief. For Levy, that grief spawned an onslaught of questions: “Is there an appropriate way to grieve? Why was I not feeling what I thought that I should feel? Was it enough?”

Good Grief airs those questions out loud, though it doesn’t necessarily answer them. “If it’s not saying explicitly what you should do, I think it’s a cautionary tale of what maybe you shouldn’t,” Levy says. “To write Marc as an avoidant, it felt important, because I know so many people that choose the distraction over the confrontation.”

Good Grief is also, above all, a love letter to found family, to the friends who “help [detangle] that knot of feelings,” as Levy wrote in his director’s statement. In the movie, Thomas and Sophie buoy Marc with quiet acts of care, keeping him afloat. In Levy’s own life, he came out as gay to his friends first, unsure how the news would change the dynamic of his relationships with his family.

Terrance (Jamael Westman), Thomas (Himesh Patel), Sophie (Ruth Negga), and Marc (Daniel Levy) pile onto the couch at a Christmas party.

“My friendships are the great loves of my life,” Levy says. “And the idea of telling a story where the romance was the friendship felt really important to me.”

Toward the end of the movie comes a monologue from beloved British icon Celia Imrie, who plays Marc’s lawyer, Imelda. She’s helping Marc parse through Oliver’s will and offers him advice that, as he was writing the script, Levy felt was like an epiphany of sorts, a potential answer to his many questions.

“Physiology has a clever way of protecting us from what we perceive to be a threat to our bodies,” Imelda tells Marc, “which is why the more we close ourselves off, the less we feel.”

“And you can survive that way, until the usualness of it all starts creeping in, and the new life you’d built as a refuge begins to feel like a void,” she continues. “Because, as it turns out, to avoid sadness is also to avoid love.”

Complete Article HERE!

How Hospices Can Improve Health Equity for Rural-Based LGBTQ+ Seniors

By Holly Vossel

Aging LGBTQ+ populations have few options for quality end-of-life care – particularly those in rural areas – and hospices are ramping up efforts to reach them.

Access to hospice can be challenging for many seniors in remote or rural regions. Terminally ill seniors in these locales often experience higher levels of loneliness and isolation at the end-of-life due to a lack of nearby hospices or support from family caregivers.

This isolation can be compounded for LGBTQ+ seniors with terminal and serious illnesses, according to Dr. Jennifer Ritzau, vice president of medical staff services at HopeHealth, a Rhode Island-based hospice, palliative and home care provider. She also serves as medical director of palliative care at the nonprofit organization.

“I think one of the things that feels like the tip of the iceberg for my team is loneliness and hopelessness,” Ritzau told Hospice News during the Palliative Care Executive Webinar Series. “I think increasingly in our world, sadly, many rural people are alone. I think especially LGBTQ+ elders end up alone. There are lots of places where we see that words and actions fail in being loving and supportive in that part of their life.”

LGBTQ+ communities have historically faced discrimination across the care continuum, leading to fear and mistrust that complicate their ability to access hospice and palliative care professionals, Ritzau indicated. These issues can be even more challenging for LGBTQ+ seniors than other social determinants of health such as socio-economic status, she said.

“There are resources for some other [social determinants], but when someone really has nobody that is a harder one to solve sometimes. You and your team can’t be there for them 24/7,” Ritzau said. “It is really hard [for clinicians] to walk out of that house, close the door and know that nobody’s coming back until you do later.”

The dangers of isolation

Roughly 3 million LGBTQ+ adults live in rural areas across the United States, representing nearly 20% of the nation’s overall population of this community, according to a study from the Movement Advancement Project.

Though more hospices are trying to improve access to end-of-life care among underserved communities, more work is needed to ensure LGBTQ+ seniors have quality experiences, according to Dr. Michael Barnett, hospice and palliative physician at Four Seasons. The North Carolina-based organization provides adult and pediatric hospice and palliative care across three counties in western regions of the state.

Hospices stand to improve upon their recognition and understanding of what the LGBTQ+ rural community looks like and what challenges they often have as they age, Barnett indicated.

In addition to having smaller social circles of family and friend caretakers, LGBTQ+ individuals in rural areas can also have fewer hospice providers available in their geographic regions, he said. These isolation issues are layered by the practical challenges of rural living that can create barriers to end-of-life care such as spotty internet and phone connectivity, Barnett stated.

“As seriously ill LGBTQ+ adults get sicker, they’re increasingly isolated from an outside world that gets much smaller as they’re able to do less,” Barnett told Hospice News. “And that’s even harder for rural areas where patients can sometimes have little to no cellphone coverage or internet access. They’re disconnected socially, physically and distanced from medical support structures.”

As seriously ill LGBTQ+ adults get sicker, they’re increasingly isolated from an outside world that gets much smaller as they’re able to do less. And that’s even harder for rural areas where patients can sometimes have little to no cellphone coverage or internet access. They’re disconnected socially, physically and distanced from medical support structures.
– Dr. Michael Barnett, hospice and palliative physician, Four Seasons

Though telehealth can be a window into the worlds of rural-based hospice patients, it can also represent a barrier for LGBTQ+ individuals who may lack connectivity, as well as the trust to confide in health professionals, Barnett added.

“We’ve come to rely on technology for support, but that’s a real issue for LGBTQ+ seniors who are already experiencing technical challenges, let alone trust factors and isolation,” he said. “It’s looking at the real issues of this broader community in a whole different context.”

Gender-affirming hospice care hard to find

Not only are hospices in rural regions often stretched thin in terms of available clinical resources, they can also face regulatory challenges around providing gender-affirming training for staff. Evolving state laws represent a key challenge in striving toward more gender-affirming hospice care.

Some states have recently passed legislation banning the delivery of gender-affirming care including Idaho, Indiana, Mississippi and Tennessee, among others

About 574 bills have been introduced thus far in 2023 across 49 states nationwide that include legislation related to transgender rights, according to the Trans Legislation Tracker. Around 83 of these laws have passed, 366 are actively in consideration and 125 were blocked, the data showed.

Many of the states with some form of these laws in place have large rural regions with several pockets of seniors, including LGBTQ+ communities that may be less than well-known among providers due to fear of discrimination, according to Barnett.

“It’s still fairly common to hear hospices say, ‘I don’t really have many gay or transgender patients in my community,’” Barnett said. “The truth is, you do, and many of these aging LGBTQ+ adults have never had affirming health care providers. They come from generations where gay activity was criminal or treated as a pathologic mental illness. So to suddenly expect them to be open and create that safe space of respect, quality and a good death is a big challenge, especially in rural regions where they’ve often been mistreated by bias in their own communities.”

Despite regulations within their geographic service regions, hospices must recognize the importance of ensuring that staff at all levels are trained and educated in gender-affirming care, along with the leading reasons behind disparities among LGBTQ+ communities, according to Kimberly Acquaviva, social worker and professor at the University of Virginia’s School of Nursing.

Having interdisciplinary teams that are trained in gender-affirming health care delivery practices is a crucial part of breaking down barriers among underserved LGBTQ+ seniors, Acquaviva said. This type of training is a large responsibility for leaders to instill in their code of ethics and training policies to avoid discriminatory practices, she stated.

“They absolutely have to bring attention to human rights violations,” Acquaviva said during a recent American Academy of Hospice and Palliative Medicine webinar. “Nurses have a right to speak out. Social workers also have an obligation to engage in advocacy [and] should engage in political and social action that seeks to ensure all people have equal access to resources, services and opportunities they require to meet their basic human needs. Chaplains [and] spiritual care professionals are accountable to the public faith community, employers and professionals [and] must promote justice in relationship with others in their institutions and in society.”

How to improve

Hospices seeking to address this issue need to provide employee training that has “hard empathy pieces” woven throughout, according to Barnett.

Important training elements include teaching staff about the intersectionality of community structures and social determinants that add to layers of stress, discrimination and health inequities around sexuality, gender and class, he said. This allows staff to see how these factors “stack on top of one another” in the dying process for LGBTQ+ seniors, Barnett stated.

Hospices can also instill clear nondiscrimination policies and ensure staff understand how these apply to their roles, he said. Having a staff that includes representatives of the LGBTQ+ community can also improve reach among this group through trust building and understanding, Barnett stated.

“It’s about being thoughtful of how we train on these practical and discriminatory issues. It’s also being thoughtful about hiring LGBTQ+ staff,” Barnett told Hospice News. “Seeing someone in their care team that represent themselves in some way allows them to have the language and comfort level. These things will go a long way in responding and speaking to the suffering at the end of life.”

Hospices that invest in gender-affirming care delivery improvement stand to gain in terms of improved quality, reach and utilization of their services among LGBTQ+ seniors, according to Ben Marcantonio, COO and interim CEO for the National Hospice and Palliative Care Organization (NHPCO).

Focusing on these and other underserved populations can be part of how hospices shape their strategic growth plans, Marcantio said. Hospices that actively focus on quality measures aimed at reducing health inequities have demonstrated improved outcomes among these communities, he indicated.

“The key areas of focus right now in progressing those measures towards improved goals of serving underserved communities that hospices are doing is reflected in both their strategic plan and direction, the implementation and the execution of those,” Marcantio told Hospice News. “That’s where a lot of this work gets done where there’s evidence that organizations are committed to and carrying out those should be noted. It’s having measurable outcomes demonstrating that there is an increased impact in the community in the percentage of, for example, Latino, African American or LGBTQ+ community members now being served in relation to their presence in the population of that given region or or community.”

Complete Article HERE!

A Compassionate Journey

— Advocates for Inclusive End-of-Life Options

Compassion & Choices

By Jen Peeples

The journey towards the end of life is an inevitable part of our human experience. However, the circumstances surrounding this transition can be far from equal, particularly for marginalized communities. We had the opportunity to meet with Meagan Williams, a member of the Communications Team for many national campaigns, including in Minnesota. She connected us to the exploration of tireless efforts of organizations like Compassion & Choices, that are dedicated to advocating for expanded end-of-life options through education, outreach, and legislative change.

Williams expressed that their work serves as a beacon of hope for those directly affected by inequities from the system, while also striving to grant patients who request medical in aid death a greater autonomy and respect during their final moments.

Compassion & Choices is a prominent advocate in this space. They are relentlessly working to shed light on disparities in end-of-life care. Understanding that the path towards a compassionate and inclusive approach to end-of-life decisions begins with education and awareness. Through their outreach efforts, they aim to empower individuals and communities-especially those from marginalized backgrounds, by providing information and resources needed to make informed choices. We had the opportunity to sit-down with 4 amazing advocates of Compassion & Care. Their work is an expression of their passion. One to be known today and remembered tomorrow:

Osha Towers (they/them), a key figure in the LGBTQ+ Leadership Council, shared firsthand the shortcomings in LGBTQ+ end-of-life care during the trying times of the COVID-19 pandemic in 2020. Towers emphasized that there is deep discrimination that often arises from a profound lack of understanding and empathy– leading to distressing challenges such as misgendering, legal vulnerabilities, and the denial of chosen families.

When asked the purpose of their passion in this field, they shared, “I lost many loved ones throughout my community. Working within Black and brown LGBTQ+ healthcare– Yet advocacy work within end-of-life care specifically rose for me within the LGBTQ+ community when my coworker lost their long-time partner. Although this was someone, they had spent years caring for, their partner’s family did not honor their relationship or the queer life this person lived. So, they swooped in, took over, booted any level of queer community from the process, and buried them outside of reflecting on their whole identity.”

The fire behind the Council’s mission centers on priorities like inclusion by meeting the unique needs of LGBTQ+ individuals while driving institutional change. By engaging with diverse LGBTQ+ groups across the nation, Towers has developed a shared understanding of the importance of medical aid in dying, shaped by the community’s collective losses during the AIDS epidemic.

Now, the medical in aid dying has not always been accepted or approved by certain communities. However, a different intention and meaning was brought the platform by Dr. Joanne Roberts, a terminally ill physician, also initially held reservations about medical aid in dying laws. However, her personal journey and convictions have led her to recognize that such legislation can provide relief and rested assurance to suffering patients.

Dr. Roberts has a compelling mission to humanize this issue through the power of storytelling, emphasizing that death transcends political divides and dispels concerns about the misuse of aid-in-dying by citing data from states with extensive experience in its implementation. To hesitant lawmakers, Dr. Roberts gently reminds them that this is an individual choice, and no clinician should feel compelled to participate if it violates their moral principles.

Along with Dr. Roberts fight to appeal to legislation, Dr. Rebecca Thoman oversees legislative advocacy for Compassion & Choices in Minnesota and has been tirelessly working to advance the proposed End-of-Life Options Act. Though it faced setbacks in 2022, Dr. Thoman remains hopeful that it could see action in 2024.

Recognizing the importance of countering misinformation and creating a sense of urgency around the topic of death through peer testimonies, Dr. Thoman faithfully educates and leads other physicians on the infrequent use and strict oversight of aid-in-dying. This is all while respecting individual doctors’ moral right to opt out. Dr. Thoman understands that for lawmakers, bridging the gap between hypothetical concerns, the realities of clinical practice, and personal stories are keys to garnering their unrelentless support. If the legislation passes, Dr. Thoman believes it will bring solace through expanded end-of-life options for countless diverse individuals.

While also on the legislature end, we have attorney Phil Duran. Duran is known for his advocacy in LGBTQ+ rights in the approaches of medical aid in dying work with a unique perspective. He understands that arranging the plans one’s medical aid in death can offer a sense of peace; a sentiment shared by same-sex couples who were once denied the right to marry.

Through his work with Rainbow Health, Duran is actively expanding culturally competent care access for LGBTQ+ and aging communities through provider education and patient empowerment. He acknowledges that privilege often plays a role in determining the level of agency one has in making end-of-life decisions. Duran believes that by countering religious opposition and amplifying diverse stories, we can broaden the movement for compassionate end-of-life options.

While each advocate featured in this article brings their own expertise and experiences to the table, there are common threads that unite them in their pursuit of a more compassionate and equitable approach to end-of-life choices. Education, empowerment, and equity are at the heart of their endeavors. Despite their diverse backgrounds, they all share a profound understanding of the value of having options and autonomy when it comes to one’s own passing. Through their steadfast commitment to amplifying diverse voices and stories, driving policy changes, and expanding societal mindsets – these advocates serve as inspiring examples of the passion that fuels a movement toward greater compassion and care at life’s transitioning end.

Complete Article HERE!

When disease ravaged her body, Sara was crystal clear about what she wanted.

— Here’s what she chose to do

By Nina Rota

A man from the home care agency calls on a Monday morning. “The caregivers are complaining. It’s too hard to transport Sara, to move her from the bed to the wheelchair and onto the stairlift. You need a lift or some other assistive device.”

A rush of sadness settles into my body. The end has arrived. “Sara is leaving on Friday,” I say, “Can we hold out till then?”

“Oh,” he says, and pauses, “I’m so sorry to hear this.”

My partner, Sara Flint Greenberg, was nearing the end of her nine-month journey through amyotrophic lateral sclerosis, more commonly known as ALS or Lou Gehrig’s disease, and she would take her life on Friday.

There is nothing more we could do. Her body has been ravaged by this devastating disease and she has been crystal clear, from the beginning, that she would leave when she can no longer take care of herself.

There are steps to the end of this journey.

Later that Monday morning, Sara speaks with a doctor, answering some required questions. Does she have less than six months to live? Is she mentally capable of making the decision to end her life? Can she self-administer the medication? Luckily, the session is short. Sara spends much of her day on a machine which helps her to breathe. Too much talking leaves her gasping.

On Wednesday morning Sara speaks with a second doctor who agrees that she qualifies to receive medications that assist in dying under the requirements of the California End of Life Option Act. The medication that will allow Sara to leave will be ready on Friday.

On Wednesday afternoon we celebrate our wedding. Sara and I marry in the late November light of our living room. I am not strongly attached to marriage, but as the day of Sara’s passing drew closer, I felt an overwhelming need to express the beauty of our love in ceremony.

The temporary chuppah is held over our heads by Sara’s sons Aaron and Jacob, our friend Audrey and a caregiver. We have found an independent rabbi to marry us because I am not Jewish. The rabbi is adorable in her Converse sneakers, covered with stars, as she takes us through this bittersweet ceremony. The ceremony is short because Sara is exhausted. It is her last gift to us, her family.

On Friday morning, our friend Margaret arrives from New York, kisses Sara on the cheek and tells her she loves her. It is all anyone can do. Audrey is in the kitchen. She has been with us for days, helping us through.

Later in the morning, a rabbi from our synagogue arrives to help us say goodbye to Sara. Margaret and Audrey go downstairs to wait. They sit, mostly silent and sometimes hold hands. The room feels heavy. They can hear Sara breathing above them, but they know she will not be there for long. It is one of the most reverent acts of love: to witness in silence the death of another.

At noon, Sara takes a pill to prevent nausea and vomiting when she takes the medication that will end her life. I sit beside her on the couch, Aaron is at her feet and Jacob is across from her. The rabbi is just beyond our circle as he begins to guide us through our final words. Everything is said on the edge of tears. We listen closely to hear our soft voices.

Sara regrets, deeply, that she will never see her grandchildren. She will not see her sons grow further into their lives or settle down with partners and start families. She gathers her breath and questions them closely because this is her last chance. She wants to know what their futures looks like because she will not be there.

There are apologies because anything left to be said has to be said. Death demands it. We make promises because who would say no? Sara would do anything for her sons and I promise to do the same. We celebrate Sara’s bravery. She left a longtime marriage, late in life, and jumped into love with me. And the bravery she shows today in making this choice.

The rabbi asks Sara where we can find her after she’s gone. “Walking in these hills,” she says, of the land surrounding our home where she once walked every day. She is now struggling to breathe and is silent. We are left with silence and the presence of love. We will carry this love everywhere we go.

It is almost an hour after Sara took the anti-nausea pill. She must take the medication now or wait for another day. The hospice nurse has not yet arrived. We call our hospice provider. They tell us to mix the medication with apple juice and give Sara sorbet because the taste can burn her throat. Sara reaches for the medication with both hands. She is ready to leave.

As the medication moves through her body, she prays in Hebrew: “HaShem Sheli, HaShem Sheli, ya’azor li” (“My God, my God, help me”). She recites the Shema, a centerpiece of prayer services in Judaism. As she draws closer to leaving, her last words are “Thank you, thank you,” a beautiful sentiment and a sign, I hope, that she is at peace.

Sara slides slowly down the couch, her cheek resting against the back of my hand. I feel life in her body, but after half an hour I am not sure. The hospice nurse has arrived. I ask him if she has passed. No, she is still here. Another half hour and I ask again. He checks her pulse. She has left.

My beautiful Sara is gone.

Complete Article HERE!

How Gender-Affirming Care Bans Could Impact Hospice Access, Utilization

By Holly Vossel

Hospice providers are growing increasingly concerned about how state laws related to transgender rights may impede access to their services among LGBTQ+ communities.

A rash of states have recently passed legislation to ban the delivery of gender-affirming health care, including Idaho, Indiana, Mississippi and Tennessee, among others.

What’s happening in these states has caused mounting concern around access to quality hospice care for LGBTQ+ individuals, according to Kimberly Acquaviva, social worker and professor at the University of Virginia’s School of Nursing.

“It’s not difficult to imagine that transgender individuals living in those states may be hesitant to seek hospice care,” told Hospice News in an email. “If they receive hospice services in an inpatient facility like a hospice house, will they be addressed by their name and supported in their efforts to dress and groom themselves in a manner that affirms their gender 100% of the time? I’m not confident the answer to either question would be ‘yes.’”

Currently, 19 states in the United States have enacted bans or restrictions on the delivery of transgender health care, according to a recent report from The British Medical Journal (BMJ). Out of these states, 10 have already enacted such laws. Other states have similar laws that will take effect beginning July 1, in October or in January 2024, the BMJ report indicated.

Approximately 560 bills have been introduced thus far in 2023 across 49 states nationwide that include legislation related to transgender rights, according to the most recent data from the Trans Legislation Tracker. Around 83 of these laws have passed, 364 are actively in consideration and 113 were blocked, the data showed.

This compared to 26 bills out of 174 pieces of proposed legislation that passed the prior year, or roughly 15% of those proposed in 2022, the Trans Legislation Tracker reflected.

The volume of legislation that has been mulled or passed limiting transgender rights has been “disheartening” and makes it difficult for hospice providers to improve access and address quality, according to Dr. Noelle Marie Javier, internist at Mount Sinai Health System.

“There are roughly 29 states that do not have anti-discrimination protections in place for the LGBTQIA+ community,” Javier said during a recent American Academy of Hospice and Palliative Medicine webinar. “This number has grown tremendously and exponentially. At the end of the day, the LGBTQIA+ community simply wants to be accepted, supported, respected and treated humanely across the board. We are still dealing with the very same issues that our predecessors have long fought.”

The risks for transgender individuals in violation of current state laws has created health care access barriers for many in the LGBTQ+ community, according to Acquaviva.

“Hospice and palliative care professionals have an obligation to ensure transgender individuals have access to care and are treated with dignity and respect,” Acquaviva said. “If laws at the state level impede access and care delivery that aligns with those obligations, hospice and palliative care professionals need to speak up, speak out, and advocate for changes to the laws.”

Complete Article HERE!

We have the power to reimagine how we die and how we mourn

— We live queer lives—and we can die queer deaths too

By Zena Sharman

At the funeral for Jamie Lee Hamilton, a trans Two-Spirit and Métis Cree activist and sex worker advocate, her community sang and danced to “Respect” and “Sisters Are Doing It for Themselves” during the church service and ate cupcakes decorated with rainbows and red umbrellas. When disabled queer Korean activist and organizer Stacey Park Milbern died, her community organized and livestreamed a 150-car caravan in Oakland and shared tributes under the hashtag #StaceyTaughtUs. Shatzi Weisberger, a Jewish dyke, death educator and activist known to many as the People’s Bubbie, died in 2022 at age 92. She got a head start on her funeral four years earlier by hosting her own FUN-eral, a death-themed party where her friends decorated a biodegradable coffin with glitter and got temporary tattoos while being serenaded by the Brooklyn Women’s Chorus.

What would you picture if I invited you to imagine your own gloriously queer funeral? Maybe it wouldn’t be a funeral at all, but a celebration of life, or a drag show, a brunch, a protest or a rave. Maybe it would be all of these things and more. Would there be sequins and glitter? Dapper suits and splendid hats? Leather and denim? Cozy onesies? No clothes at all? My ideal scenario is a cross between a potluck, a magic ritual and a dance party; I like to imagine my beloved people dressed in whatever they feel most comfortable in. I hope they sing, dance, eat, laugh and cry together, resplendent in their many expressions of queerness as they gather in remembrance and celebration.

Instead of a single event, you might want several gatherings reflecting different facets of your life: a religious service by day, followed by a raucous night at a dungeon, or an intimate ceremony for only your polycule, before a larger memorial open to all of the people who knew and loved you. For some, it might feel good for your chosen and families of origin to mourn together; for others, it will be important to create protected spaces that intentionally keep out your estranged parents or your transphobic aunt. You might choose rituals, traditions or ceremonies that are part of your cultural, spiritual or ancestral practices, or want something completely secular. Maybe you’ll want a virtual memorial so your friends and loved ones from all over can remember you together, or invite people to mourn you privately in whatever ways feel right to them. What we imagine can be as unique as we are.

Our wildest imaginings likely differ from stereotypical depictions of funerals as formal, sombre events where black-clad mourners stand sadly around a heavy wooden coffin. Queerness offers us ways of perceiving and being in the world around us while making and remaking it through a distinctly queer lens. While the conditions of LGBTQ2S+ people’s lives often push us into unwanted proximity with death, we have the power to reimagine how we die and how we mourn. This includes active resistance to the violence and oppression that cuts short too many LGBTQ2S+ people’s lives and an invitation to subvert the beliefs and practices getting in the way of dying queerly, on our own terms. When we queer death, dying and mourning, they become sites of creativity, self-determination, collective care and resisting oppression, creating opportunities to challenge dominant ideas, practices and narratives that limit our ability to express who we are at every stage of our lives, including when we die.

As a death doula and self-identified death nerd, I talk about death a lot, and I’ve noticed that people tend to have one of two instinctive reactions when I bring it up: they recoil, regarding me strangely—or they lean in, wanting to know more. These leaning-in moments feel intimate to me. They often come with stories about a beloved person who died, questions about grief and death and the kinship of knowing it’s safe to talk about something that can feel unsayable. I’ve had these tender exchanges with friends, co-workers and strangers, which shows me how hungry many of us are for spaces where we can talk openly about death. There’s something about these interactions that feels inherently queer to me: holding space for each other while we share a raw or vulnerable truth, or reveal parts of ourselves that we’ve learned to keep hidden away.

Many of us have internalized a tendency to avoid talking about death, an instinct that can be accompanied by feelings of fear, anxiety or denial. When we do think about it, we may keep our thoughts to ourselves because we don’t feel ready to start a conversation about death with the people around us, or because we’ve consistently received messages that talking candidly about death or grief is risky or off-limits. For some of us—especially racialized, Mad and disabled people—talking openly about death or freely expressing grief can lead to pathologization or criminalization.

It can feel overwhelming to confront our mortality or that of the people we love, and many of us haven’t been taught the basics of what the dying process looks like, or what to do when someone dies. Before my oldest child was born, we went to a prenatal class to learn what happens during and after a birth. I wish I’d had a similar opportunity to learn about death a decade ago when I was caring for my mom at the end of her life. “We’re hungry to understand our own death and our own mortality and the death that surrounds us all the time, in a more real way,” Santa Fe, New Mexico-based death educator and host of the Death Curious podcast, Alexandra “Aries” Jo, tells me. They attribute this hunger to the stripping away of death from our everyday, mundane lives.

It hasn’t always been this way. It used to be more common in North America to experience death as a collective, community event. Deaths were more likely to happen at home, where family and community members—often women—cared for their own dead. Some communities have kept these traditions alive as part of their faith or cultural practices, and a growing number of people are accessing home hospice care. But for many of us, the past century has brought with it the increasing medicalization and professionalization of death and death care, transforming it into something that happens behind closed doors in settings such as hospitals or funeral homes. As a result, historian Katherine Arnup explains in a Vanier Institute report on death and dying in Canada, the experience of death has become “very foreign and frightening” for many people.

Yet it feels like an oversimplification to speak about death avoidance or the place of death in our everyday lives without acknowledging that many people and communities live and die in contexts saturated with death and grief, experiences that are tied to systemic oppression. “Loss is a part of life. Bereavement is natural. Grief is natural,” Oakland, California-based author and media justice activist Malkia Devich-Cyril tells me, “but mechanized loss, racialized loss, loss that comes as a result of inequality—that’s not natural. It is unnatural and it is the direct result of groups of people [in power] refusing to lose.” Devich-Cyril, author of a forthcoming book on Black grief and radical loss, points to how these forms of loss produce “an undue burden on those of us who have less power in the world. Grief becomes not only a consequence of disadvantage, but a cause of disadvantage and of disproportionate experiences of grief.”

Stefanie Lyn Kaufman-Mthimkhulu, a Providence, Rhode Island-based disability justice educator and organizer, challenges the idea that the COVID-19 pandemic prompted many people to confront death for the first time. When faced with this sentiment, Kaufman-Mthimkhulu tells me, “So many disabled folks I’m in community with are like, ‘Okay yeah, maybe for you, but not for us.’” Kaufman-Mthimkhulu’s own relationship with death and dying is shaped by being a younger disabled person who has experienced shifts in their body’s capacity and access needs while grappling with medical ableism. It’s also been influenced by their experiences of navigating chronic suicidality. When reckoning with their own mortality, Kaufman-Mthimkhulu draws on the “lessons in impermanence” that come with the “dynamics of living and dying on crip time.”


While I’ve read lots of books and taken several courses to learn more about death, dying and grief, the first people to teach me important lessons about collective care for dying people and how to come together in mourning were leatherdykes a generation older than me who’d lived through the AIDS crisis. It was they who showed me how to organize end-of-life care outside of inadequate and inaccessible state-run systems. They showed me it was possible to stop traffic to sing our beloved dead through the street into their memorial celebration. In these ways, they were part of a lineage of LGBTQ2S+ people who cared for their own dying and dead community members as part of a wider response to the state abandonment and systemic discrimination characteristic of the AIDS crisis in the 1980s and 1990s. Our lineages include experiences of immense loss and collective grief and trauma; they also include organized resistance, collective care and a refusal to abandon each other during and after death.

Today, in my own circles as a queer person, more than one friend has expressed surprise to me at having lived into their thirties or forties, ages they were convinced they’d never live to see. With waves of anti-trans legislation and fascist violence currently sweeping North America, many trans people are fearful of increased violence and risk of harm, prompting some to hold protest signs with the message: “The trans agenda is an average life expectancy.” While supportive of the larger death positive movement, Los Angeles, California-based end-of-life doula, writer and educator Vanessa Carlisle, who is queer and non-binary, tells me they prefer to think of themself as “death accepting” because “I don’t need to be death positive about how much death is happening in my community.” Carlisle, who has deep roots in LGBTQ2S+ and sex worker communities, emphasizes their commitment to fighting for community survival as part of their work in end-of-life care. They want the communities they’re part of “to survive and be happy and well in a world that seems hell bent on destroying us.”

Sarah Chavez, the Los Angeles, California-based executive director of the death education and advocacy non-profit The Order of the Good Death and a founding member of The Collective for Radical Death Studies, affirms that this spirit of resistance and solidarity is integral to death positivity. Chavez, who co-founded the modern death positive movement in 2011, tells me that death positivity is fundamentally “about engaging and talking about death in an honest and open way, without shame.” She emphasizes that we cannot do this “without engaging with the systems and conditions that lead to unacceptable or bad deaths that result from violence, a lack of care, and all forms of systemic oppression.” 

“Queering death is also an opportunity to challenge narrow and limiting understandings of what constitutes a good death.”

How we die is intimately interwoven with how we live, Chavez points out, and “the exact same experiences and barriers that individuals encounter in life typically follow them right into death,” shaping our end-of-life experiences and what happens to our bodies after we die. She cites the example of the added stressors a dying person who is undocumented and their loved ones might face at end of life, like fear of deportation, family separation, language barriers, lack of access to cultural practices and the added costs associated with repatriation of someone’s body to their home or ancestral country. These barriers are systemic: a third of U.S. hospice programs limit access or outright refuse to care for undocumented people at end of life. This is why, for me, queering death demands the transformation of our health and end-of-life care systems and is wholly aligned with an abolitionist politic that includes border abolition.

Queering death is also an opportunity to challenge narrow and limiting understandings of what constitutes a good death. As researchers Cindy L. Cain and Sara McLesky write in an academic article on expanding definitions of the “good death,” qualities often associated with a “good” death—like not being a burden to others or mending familial relationships—“de-individualize the experience of death and disregard diversity within definitions of what is good.” These mainstream understandings, which shape the design of everything from our end-of-life care systems to the laws and policies governing death and dying to the training of hospice and palliative care providers, prioritize “a vision of dying that may not be achievable” or desirable to all patients and function as “a form of social control that seeks to discipline patients and their family members.”

An example of this is the ableism often inherent in stereotypical ideas of a good death. Kaufman-Mthimkhulu tells me they’ve often heard people describe a good death as “someone who’s died silently in their sleep at night, who’s a burden on no one and nothing.” They connect this to the “tremendous amount of fear” many of us internalize about “losing capacity, becoming more interdependent or more reliant on other people, or entering into new kinds of relationship dynamics where power might be shifting.” This is a very real fear for the disabled Canadians being systemically denied the supports they need to live while the government expands their access to medical aid in dying. At the same time, the ability to maintain our independence shouldn’t be the foundation on which we build our ideas of a good death. As in all facets of our lives, death is an opportunity to embrace interdependence as a foundational principle of disability justice. That’s why Kaufman-Mthimkhulu’s idea of a good death is “somebody who is able to move through the process of dying in a way that adheres to their values and beliefs and is met with compassionate, competent, self-determined care.”

In a blog post on what the death positive movement isn’t, Caitlin Doughty, the mortician and advocate who founded The Order of the Good Death, writes that it’s imperative to support communities to define “what a ‘good death’ means to them” and to work alongside each other to dismantle the barriers that get in the way of such deaths. When I think of how I might define what a good death means to me, I’m reminded of the consent practices I’ve learned from being part of sex-positive queer communities for the past twenty years. What feels good in the context of my embodied experiences, my identities, my relationships and my history might not feel good to you, and vice versa. When I contemplate this more broadly in relation to queering death and dying, I return to the themes of creativity, self-determination, collective care and resisting oppression.

To me, queering death is part of a larger liberatory project encompassing our efforts to fight for the survival and thriving of all communities experiencing systemic oppression. As a longtime LGBTQ2S+ health advocate, the more I look at death, the more I think about how we live our lives, what enables our individual and collective flourishing, and what gets in the way, at every stage of our lives. Queering death is about when, where and how we die, the care, support and options we have access to during this process, and what happens to us and our loved ones after our deaths. It’s also about actively working for a world where all LGBTQ2S+ people—especially those who experience the most significant and harmful impacts of systemic oppression, like people who are trans, racialized, Indigenous, disabled, Mad, poor, incarcerated, unhoused and/or undocumented—have what they need to live long, full, joyful lives free from violence and harm. Queering death is not about hastening the inevitable; it’s about fighting for us all to live and die in ways that respect, honour and celebrate every aspect of who we are.

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The uphill battle for LGBTQ people after death

The Louisiana LGBTQ+ End of Life Guide. Though it was made with Louisiana’s laws in mind, creators of the guide are hoping to adapt and expand it to every state in the country.

By Katy Reckdahl and Christiana Botic

Three years ago, Robert Turner, a retired computer analyst in New Orleans, was diagnosed with Parkinson’s disease. So far, Turner, 63, only feels slightly stiff and a bit slower in his motion. “I tell my doctor I’m on the 20-year plan of surviving this,” he said.

Still, because Parkinson’s is progressive, his sister, a geriatric nurse, imagines the worst.

So Turner spent part of last week leafing through the 35-page Louisiana LGBTQ+ End of Life Guide, created in New Orleans about a year ago. It’s thought to be the first of its kind in the United States.

He’s been focused mainly on the guide’s first of four sections, called “When You’re Well,” which deals with Louisiana law and death planning, advance directives and wills. “I’m not ruling out a future husband, but there’s not one currently,” he said, as he outlined where his possessions will go and who can make funeral arrangements for him.

Robert Turner at home in New Orleans. He has Parkinson’s and is utilizing the Louisiana LGBTQ+ End of Life Guide.

Turner understands the stress of not having the proper legal framework in place when a loved one passes. “It’s just one of those things that we all put off and we all need to do,” Turner said. “My first husband died of AIDS in the early ’90s. We had scheduled a lawyer to come visit him in the hospital the next day, and he died that night.”

“Louis was really my first boyfriend, my first partner, my first husband, even though gay marriage was, of course, not legal in Louisiana then,” Turner said. “I didn’t have anything legal to show for his estate that he was my partner.”

A handmade magnolia wood urn holds the remains of Turner’s late husband, Louis Magee, who died at 38.
Turner looks at a photo of him and Louis.

The guide is the brainchild of Ezra Salter, 31, a funeral director in suburban New Orleans.

The onus to create this comprehensive guide came after Salter started dating their partner, Keira, a transgender woman. Salter, who identifies as nonbinary, was shocked at the disapproval that came from family. Salter feared what might happen if one of them died but couldn’t find a centralized, readily accessible resource to help them navigate the issue.

Neither of the pair have changed their names legally, and though relationships with family are improving, the tensions have remained. Salter’s parents haven’t met Keira during the 10 years they have been together. Some members of Keira’s family still refer to her by the name she was given at birth, known as a “deadname.”

Nonbinary funeral director Ezra Salter, who created the Louisiana LGBTQ+ End of Life Guide, at Metairie Cemetery.
Salter walks through Metairie Cemetery.
Salter holds Keira’s hand. The married couple have been together for 10 years.

In collaboration with several experts, Salter published the Louisiana LGBTQ+ End of Life Guide in 2022.

Salter said they frequently hear from guide users that “‘I never thought of this, I thought that power of attorney was enough,’ and not fully understanding the depth of what they need to protect themselves.”

“Getting documents in line prevents some heartaches,” Salter said of planning for death for unmarried couples in the LGBTQ+ community. “It’s difficult to see someone struggle with the idea that the husband who they used to sleep next to every night is sitting dead in a cooler because you can’t cremate them earlier unless you have this magic piece of paper.”

The family tension Salter speaks of is a common experience among members of the queer community. It makes the guide a necessity.

Salter and Keira, left, watch television at their home.

Nicholas Hite, of the Hite Law Group in New Orleans, founded his own law group in 2013 and focuses on LGBTQ+ representation. “Part of preparing, legally, for death is understanding that it’s most often not a lightning-bolt moment, where you’re alive one minute and dead the next, because of medical care and the nature of modern life.”

“For queer folks, your biological family — the people who are legally the next in line to make decisions — are oftentimes the last people that you want making your decisions,” he said. “So you need legal paperwork allowing your most closely held individuals — who aren’t necessarily married to you or related by blood — to be in the hospital and at the funeral home with you and on your behalf.”

Lawyer Nicholas Hite at his office in New Orleans.

Three years ago, because Ellen Stultz lacked such paperwork, she spent three months trying to claim the body of her close friend Oscar White, 62, who died without a partner or known family. “The situation was hard for me, still is really hard for me,” said Stultz, who has fond memories of French Quarter strolls and whiled-away afternoons at White’s apartment with his little family of adopted stray dogs.

After two months, she started to worry that White would be buried in an unmarked grave. She called the morgue every day, then connected with Salter through mutual friends. Within a week, she’d received a box in the mail containing White’s ashes.

Ellen Stultz saved the USPS box that conveyed the ashes of her friend Oscar White.

“His death was so traumatic,” Stultz said. “Yes, this is something that happened, but it seems like it doesn’t have to.”

Stultz did all she could within the system to claim White’s remains. Though no one else was requesting them, the state would not release the remains because she was not a blood relative. “When I first called the morgue, they were like, ‘Wait and see if any next of kin comes to claim his body.’ And at this point, he’d already been there a month. They didn’t really have much advice except just, ‘Keep calling,’” Stultz said. “Once I got Ezra involved, having someone to advocate for me, that’s all it took.”

Stultz holds White’s ashes.
Stultz holds photos of White and their group of friends in New Orleans.

For gender-diverse people, death arrangements have added complications, said Salter, who often hears the same questions again and again. “Who’s going to handle my body when I die, and how can I make sure that they use the right name and the right pronoun?”

“As I became trained in funeral service, I asked specific questions a lot, to every professional I met,” Salter said. “I’d raise a lot of hypothetical questions —“I’m asking for a friend.” I made it my business to get these answers because it was not clear anywhere online. I kept what I call a ‘chaotic Google Doc’ of everything I knew about funeral services.”

“I put my own life and, sort of, my own transition on hold to gain knowledge and work in a system, so that I can then go help people outside of the system who still need to interact with this institution and, you know, bridge the gap,” Salter said of working in the corporate funeral industry.

Salter holds a casket key they use at the funeral home where they work.
Makeup used to cosmeticize the dead.
The parlor room at Salter’s funeral home.

Hospital policies rarely deal with what gender (or nongender) should be assigned on death certificates, said Dietz, a contributor to the Louisiana guide who works as an advocate for transgender health care. (Dietz uses a mononym, without a surname.)

Most often, gender determination is made by the doctor signing the death certificate. But gender markers from medical records can be unreliable, since transgender people who still need prostate exams or Pap smears — considered “gender-specific care,” may retain their birth gender, even if they change gender on driver’s licenses, Dietz said.

“Oftentimes, life feels so overwhelming to LGBTQ+ people, depending on your layers of intersecting identities that are oppressed. So it can be really hard to prepare for death when we’re trying so hard to live,” Dietz said.

Because laws and institutional policies vary greatly between states, the creators of the Louisiana guide hope to create similar guides for every state, through a partnership with the national death-care advocacy group the Order of the Good Death.

Dietz, a contributor to the Louisiana LGBTQ+ End of Life Guide, at home in New Orleans.

In Louisiana, all powers of attorney expire at the time of death, said Liz Dunnebacke, who helped publish the guide through her New Orleans nonprofit, Wake, which provides death-care information and resources.

So even if someone has prearranged their own funeral, their next of kin can legally override those plans. “Your estranged mother can blow in 30 years later, order a full Catholic service with rites and exclude your chosen family from the ceremony,” Dunnebacke said.

That nightmare can be averted through the Funeral and Disposition of Remains Directive, a newly minted, two-page form. “The legal code existed, but no document. So we created one, which we now make available,” Dunnebacke said.

The directive, once notarized, identifies who will make decisions about physical remains and funeral ceremonies. It is an essential step, both legally and emotionally, Hite said.

“You know, many of us spend our entire lives fighting to get control and autonomy over our bodies,” he said. “The guide empowers folks to continue to maintain control over themselves, even after they’re dead.”

Complete Article HERE!