‘It was as if my father were actually texting me’

— Grief in the age of AI

There has been a surge in the number of people sharing their stories of using ChatGPT to help say goodbye to loved ones.

People are turning to chatbot impersonations of lost loved ones to help them grieve. Will AI help us live after we’re dead?

By Aimee Pearcy

When Sunshine Henle’s mother, Linda, died unexpectedly at the age of 72, Henle, a 42-year-old Floridian, was left with what she describes as a “gaping hole of silence” in her life.

Even though Linda had lived in New York, where she worked as a Sunday school teacher, the pair had kept in constant contact through phone calls and texting. “I always knew she was there, no matter what – if I was upset, or if I just needed to talk. She would always respond,” says Henle.

In November, Linda collapsed in her home and was unable to move. Henle’s brother Sam and her sister-in-law Julie took her to urgent care. The doctors found blood clots in her lungs and gave her anticoagulation medication. At first, “nobody seemed to be very concerned about anything,” says Henle. But over the next couple of days, there was a steep decline in her mother’s condition.

A couple of days later, Linda died.

At the peak of the early buzz surrounding ChatGPT in March, Henle, who works in the artificial intelligence industry, made a spur-of-the-moment decision to feed some of the last phone text messages and Facebook chat messages she had exchanged with her mother into the platform. She asked it to reply in Linda’s voice. It had been a few months since her mother had died, and while Henle had previously connected with a local therapist to help her cope with her grief, she found it disappointing. “It felt very cold and there was no empathy,” she says.

She told the chatbot she was upset because she felt like she had made mistakes and that the hospital had also made mistakes, and that she should have been there to advocate for her mother more. The program responded: “Remember the good times we shared. Remember my love for you and let that be your guide. Grieve, yes. Grief is the price that we pay for love. But don’t let it consume you. Remember to live, to love, to enjoy the beauty of this world for you, for me, for everyone who loves you. And sweetheart, remember to take care of yourself. You are so precious and I want nothing more for you to be happy. I’m very proud of you. I love with all my heart and soul.”

Henle was surprised by how much she felt seen by this technology. She also tried using Bard and Bing AI for the same purpose, but both fell short. ChatGPT was much more convincing. “I felt like it was taking the best parts of my mom and the best parts of psychology and fusing those things together,” she says.

While Henle had initially hoped ChatGPT would give her the chance to converse with what she describes as “a reincarnated version of her mother”, she says has since used it with a different intent. “I think I’m going to use it when I’m doubting myself or some part of our relationship,” she says. “But I will probably not try to converse with it as if I really believe it’s her talking back to me. What I’m getting more out of it is more just wisdom. It’s like a friend bringing me comfort.”

For all the advances in medicine and technology in recent centuries, the finality of death has never been in dispute. But over the past few months, there has been a surge in the number of people sharing their stories of using ChatGPT to help say goodbye to loved ones. They raise serious questions about the rights of the deceased, and what it means to die. Is Henle’s AI mother a version of the real person? Do we have the right to prevent AI from approximating our personalities after we’re gone? If the living feel comforted by the words of an AI bot impersonation – is that person in some way still alive?

Chris Cruz was shocked when his father, Sammy, died. He hadn’t thought it was serious when his father was admitted to hospital: he had been in and out of hospital several times before, having struggled with alcohol addiction for years since leaving their Los Angeles home when Cruz was only two years old. “Throughout my whole life there was this aura of danger about him,” says Cruz. “I thought: he’s been through much worse. This isn’t going to get him.” But after two weeks, Cruz received a call from his stepmother. Sammy’s condition had deteriorated. The hospice was asking her for permission to remove Sammy’s life support. Cruz immediately knew what his father would want: “I said yeah, go ahead and do it.”

It took a few weeks for him to fully process that his father was gone. “I was kind of numb from everything leading up to it. He had always had a turbulent relationship with his father, who would frequently make promises that would never materialize. “He tried to see me maybe once every couple of years. We would make plans and then at the last moment he would say that he has some work that he has to attend to,” says Cruz.

Cruz was inspired by an episode of Black Mirror to try to experiment with ChatGPT, but didn’t have high expectations. “I expected it just to not perform, or to give me some kind of response that was obviously created by a program,” he says. He fed ChatGPT old Facebook conversations with his dad and then typed out his feelings. “Just so you know, I’m really sad that you’re not here with me right now,” he wrote. “I’ve done so much since you’ve passed away and I have this great new job. I wish that you could see what I’m doing right now. I think you’d be proud.”

Cruz’s chatbot responded with a positive message of support and encouragement: “I know you’re going to do great things at your new job and your new position. Just remember to keep working hard and go to work every day.” This generic phrasing may not have sounded like his father, precisely, but still, Cruz felt a mix of relief and grief.

Chris Cruz fed ChatGPT old Facebook conversations with his dad.

While Cruz said that ChatGPT helped provide him with a sense of closure, not everyone in his family understood. “I tried to tell my mom, but she just doesn’t understand what ChatGPT is and she refuses to learn, so it wouldn’t have done anything for her,” he says. When he told his friends, they gave him a half laugh. “They were like: ‘Is this an OK thing to do?’ Because I think it’s still an open question.”

Even before ChatGPT, the question of how to grieve, in a digital world, has become increasingly complex. “The dead used to reside in graveyards. Now they ‘live’ on our everyday devices – we keep them in our pockets – where they wait patiently to be conjured into life with the swipe of a finger,” says Debra Bassett, a digital afterlife consultant.

As far back as 2013, Facebook launched memorial profiles for the dead after receiving complaints from users who were receiving reminders of dead friends or relatives through the platform’s suggestions feature. But some platforms are still struggling to figure out how to memorialize the dead. In May, the CEO of Twitter, Elon Musk, was heavily criticized after tweeting that the platform would be “purging accounts that have had no activity at all for several years”. One user tweeted: “My sister died 10 years ago, and her Twitter hasn’t been touched since then. It’s now gone because of Elon Musk’s newest farce of a policy.”

But until recently, those digital memorials have mostly been places for catharsis. A friend or family member might post a comment on a page, expressing loss or grief, but no one responds. With artificial intelligence, the possibility has emerged for a two-way conversation. This burgeoning field, sometimes called “grief tech”, promises services that will make death feel less painful by helping us to stay digitally connected with our loved ones.

This technology is increasing in use across the world. In 2020, South Korea’s Munhwa Broadcasting Corporation released a VR documentary film titled Meeting You, which features a mother, Jang Ji-sung, meeting her deceased seven-year-old daughter, NaYeon, through VR technology. Jang is in floods of tears as she tells her daughter how much she missed her. Later, they share a birthday cake and sing a song together. It feels both moving and manipulative. Occasionally, it flickers back to reality: Jang is standing in a studio surrounded by green screens, wearing a VR headset.

In China, the digital funeral services company Shanghai Fushouyun is beaming life-like avatars of the deceased on large TV screens using technologies such as ChatGPT and Midjourney – a popular AI image generator – to mimic the person’s voice, appearance and memories. The company says this helps their loved ones to relive special memories with them and allows them to say a final goodbye.

In the US, the interactive memory app HereAfter AI promises to help people preserve their most important memories of loved ones by allowing them to record stories about their lives to share interactively after their deaths.

James Vlahos, the co-founder of HereAfter AI, created a precursor to the platform in 2016, soon after his father was diagnosed with stage 4 lung cancer.

“I had done a big oral history recording project with him, and I had gotten this idea that maybe there would be a way to keep his voice and stories and personality and memories around in a different and more interactive way,” says Vlahos. Together, Vlahos and his father recorded his father’s key memories, including his first job out of college, his experience of falling in love and the story of how he became a successful lawyer.

In 2017, Vlahos wrote about this experience in Wired. After it was published, he heard from other people who were facing loss, and who felt inspired by his creation. He decided to scale the app so that others could use it, leading to the creation of HereAfter AI.

The platform lets people turn photographs and recordings into a “life story avatar” that friends, family and future generations will be able to ask questions to. So a son could ask his mother’s avatar about her first job and hear memories that his real mother had recorded in her actual voice while she was still alive. AI is used to interpret the questions asked by users and find the corresponding content recorded by the avatar creator.

HereAfter ensures that the deceased have given permission for the voice to be used in this way before they die, but ethical questions still loom large over two-way interactive digital personas, particularly on platforms like ChatGPT which can impersonate anyone without their consent. Irina Raicu, the Internet Ethics Program director at Santa Clara University, says that it is “very troubling” that AI is being used in this way. “I think there are dignitary rights even after somebody passes away, so it applies to their voices and their images as well. I also feel like this kind of treats the loved ones as kind of a means to an end,” she says. “I think aside from the fact that a lot of people would just be uncomfortable with having their images and videos of themselves used in this way, there’s the potential for chatbots to completely misrepresent what people would’ve said for themselves.”

A number of technology ethicists have raised similar concerns but the psychotherapist and grief consultant Megan Devine questions whether there really is a line that technology should not cross when it comes to helping people to grieve. “Who gets to decide what ‘helping people grieve’ means?” she asks.

“I think we need to look at the outcome in the use of any tool,” she says. “Does that AI image soothe you, make you feel still connected to her, bring you comfort in some way? Then it’s a good use case. Does it make you feel too sad to leave the house, or make you lean too heavily on substances or addictive behaviors? Then it’s not a good use case.”

Raicu says that the benefits to the user shouldn’t come before the rights of the dead. Her concerns are based on real events. Last year, the Israeli AI company AI21 Labs created a model of the late Ruth Bader Ginsburg, a former associate justice of the supreme court. The Washington Post reported that her clerk, Paul Schiff Berman, said that the chatbot had misrepresented her views on a legal issue when he tried asking it a question and that it did a poor job of replicating her unique speaking and writing style.

The experience can also be unpleasant for these seeking solace. Chris Zuger, 40, from Ottawa, Canada, was also curious to find out whether ChatGPT would be able to imitate his late father, Davor, based solely on the speech patterns of a set of provided prompts.

His father had been hospitalised months previously after a fall. Zuger raced to the hospital when he heard the news, but never got the chance to say goodbye.

“Being brought to the room, I knew very well what the news was going to be. My mother, not so much. Seeing her reaction was devastating,” says Zuger.

Davor, who Zuger describes as a “larger than life character”, was the youngest of 14 children. He was born in a small village in Croatia soon after the second world war. “He was the type of guy who wanted to make sure that his kids had the opportunities that he didn’t. He worked two jobs – just to be able to make sure that we had a roof over our heads and a fridge full of food.”

After going to therapy to help process his grief, Zuger decided to feed in some of his father’s text messages and provided ChatGPT with a description of his father’s speech patterns. Then, he sent a message: “Hey, how’s it going?” He did not keep a record of and can’t remember it word for word, but he remembers that it scared him.

Chris Zuger was curious to see if ChatGPT could imitate his late father.

“It was as close as I could figure as if my father were actually texting me,” he says. But it was also a painful reminder that his father was really gone. “It’s not a text from him on my phone. He’s not across the city at his phone typing to me. It’s just prompt, regurgitating back output from its own language model. It was difficult to see the messages while knowing they were not real.”

If his father had known his son had used ChatGPT to recreate his conversations, says Zuger: “He would have thought it was wild and then asked me how to use it. He would have had fun with it. It probably would have got him off Facebook.”

Bassett, who advises technology companies on their treatment of the deceased, refers to the dead whose digital likenesses are manipulated to perform in ways they may not have while alive as digital zombies. Famous examples include Tupac Shakur and Michael Jackson, who have both been digitally recreated to perform live on stage at concerts years after their deaths.

To prevent people from being recreated with technology against their wishes, Bassett presents the idea of a digital do-not-reanimate (DDNR) order – inspired by the physical do-not-resuscitate (DNR) order, which could be part of a person’s will. Vlahos also emphasizes that enthusiastic consent from the deceased should be a requirement for using this technology. He says that one of the biggest challenges that he faces is that many people don’t realize that they want to use this technology until it’s too late for content to be obtained and the required information provided. “It’s something that people kind of think can be put off for another day,” he says. “And then that day doesn’t come. We get a lot of inquiries from people saying that a relative has already died, and asking if we can do something for them. And the answer is no.”

In the future, however, some element of digital afterlife may prove impossible to avoid, whatever our wishes, in part because the development of many AI products has outpaced the ethical questions that surround them. “For most of us who live in the digital societies of the west, technology is ensuring we will all have a digital afterlife,” says Bassett. Even if our conversations are not being fed into a chatbot, our online activity is likely to remain online for others to see for years to come after we die – whether we like it or not.

Complete Article ↪HERE↩!

July 18, 2023July 18, 2023

Almost everyone fears death

— But not in the same ways

Angel of Death, Evelyn De Morgan, circa 1881

“It is healthy and normal to be afraid of death.”

By Ross Pomeroy

Fear of death may be the most primal human fear, one we all experience differently.
People who are older, in committed relationships, physically healthy, and either very religious or not religious at all tend to be less afraid of death.
When the fear of death becomes extreme and life-disrupting, by far the most effective remedy is cognitive behavioral therapy.

Humans may be the only species fully aware of the inevitability of death. William James, considered by many to be the “father of American psychology,” famously called this fateful knowledge the “worm at the core” of human existence. This metaphorical worm today forms the basis of terror management theory, which proposes that awareness of our mortality, coupled with our self-preservation instinct, produces a primal terror that we constantly struggle to manage. To do so, we often form beliefs and take actions that provide meaning and value that we hope persist beyond our own demise, granting us a semblance of immortality. Other times, we simply cope through escapism or denial.

But just as we all deal differently with the omnipresent foreboding of mortality, so too do we fear death in distinct ways. As Cara Santa Maria, a popular science communicator pursuing a PhD in clinical psychology with a focus on end-of-life care, noted on the Skeptics’ Guide to the Universe podcast:

“Some people are afraid of oblivion. Some people are afraid of dying — the pain, the disability. Some people are afraid of leaving people behind. They’re afraid of leaving things unfinished. They’re afraid of not having a legacy. There are so many different ways that we can be afraid of death.”

A graveyard in in Belgium. — Religious iconography in cemeteries and graveyards may help reaffirm people’s belief in an afterlife and, in doing so, ease the ever-present fear of death.

Surveys suggest that common fears surrounding death are tied to the prospect of leaving loved ones behind and the dying process itself.

However, certain life choices may ameliorate the fear of death. Being married or in a committed relationship is a significant comfort. Being in good physical health helps, too. This may be because it creates more meaning in life and is broadly linked to better mental health or simply that it grants the perception that the Grim Reaper is farther away. Those on opposite ends of the religiosity spectrum also tend to be less afraid of death. Atheists tend to be more relaxed and “in-the-moment,” while strong believers take comfort in knowing there’s an afterlife and that their life has meaning.

Perhaps most comforting, we tend to grow less afraid of death as we get older. As Jade Wu, a clinical health psychologist at Duke University, writes: “This could be because older people have experienced more of life, so they have less fear of missing out. Or it might be because they have more experience with witnessing and handling the death of others.”

A painting of a group of people and the Grim Reaper. — Gustav Klimt captures the juxtaposition of death and life in his Art Nouveau oil painting.

For some, however, the fear of death can be hard to handle, developing into what’s termed thanatophobia.

“It is healthy and normal to be afraid of death, but when we venture into these pathological fears where it becomes all-consuming and it starts to interfere with our activities of daily living, there are things that we can do therapeutically,” Santa Maria said.

By far the most effective remedy is cognitive behavioral therapy. A certified therapist will help a death-fearing client to challenge their anxiety-inducing assumptions about dying and then expose the client to death in ways that will alleviate their fears. Such exposure may include watching movies with scenes that depict the end of life, reading hospice materials, or developing a plan for their own passing.

According to clinical therapist Brittney Chesworth, clients “steadily see death as a normal part of life and not the ‘scary monster in the closet.’”

Complete Article ↪HERE↩!

June 29, 2023June 28, 2023

Hospice and Medical Marijuana

— Helping At The End

By Amy Hansen

When the time of passing is close, emotions run high. When hospice if involved, it helps, but the pain of upcoming loss and all the unresolved issues are still left. In the US, people are taught to believe in happy endings. Generations have watched television shows and movies where in 30, 60 or 120 minutes all the issues are resolved and there is a last minute confession and a rebounding moment. Real life is neither as clean or as happy.

Does marijuana help in those final hours? In the moments with palliative or hospice care, anything that can help makes a difference.

Palliative care is medical care for people living with a serious illness, such as cancer or heart failure. Patients in palliative care may receive medical care for their symptoms, or palliative care, along with treatment intended to cure their serious illness.

Hospice care focuses on the care, comfort, and quality of life of a person with a serious illness who is approaching the end of life. Hospice is prescribed when a path to cure has come to an end and the focus changes to focus making the patient comfortable until the end.

Two evidence-based guidelines address the use of medical marijuana in a palliative care setting. The first evidence-based guideline explicitly recommends against the use of medical cannabis as a first or second line option for palliative cancer pain. The guideline suggests that it could be considered in the case of refractory symptoms and with careful consideration of potential risks. The second evidence-based guideline similarly recommends that medical cannabis only be used in the palliative care setting when other treatments have failed, and after consideration of the potential for adverse events and drug interactions.

In study after study, medical marijuana can helps increase appetite, relieve painful constipation, and diminish pain. Hospice focuses on the focus well being, knowing there isn’t a long-term cure. Currently, most science shows medical marijuana manages systems but not resolve an serious ailment or injury.

shallow focus photography of bubble on leaves

Perhaps equally importantly, marijuana is used in the hospice care setting to ease spiritual and existential suffering. Some studies showing an important therapeutic role for patients faced with the despair of a terminal illness, loss of functions, and a lifetime of reflections. A mild euphoria or sense of well-being can ease a patient’s mind, body and spirit as they come to terms with their fate.

In 2019, a study was conducted among hospice professionals. About half of the respondents were nurses followed by administrators and physicians. Regardless of legal status, hospice staff members were overwhelmingly in agreement that medical marijuana is an important tool in supporting their patients.

Though medical marijuana is legal in 40 states, plus the District of Columbia, conflicting federal laws present a challenge for hospice and palliative care programs whose patients are interested in medical cannabis or already using it to manage pain and other symptoms.

The situation is particularly challenging for hospices, which are primarily funded by Medicare. Many hospices say they cannot legally prescribe medical marijuana because it remains a Schedule 1 controlled substance under federal law.

Complete Article ↪HERE↩!

June 18, 2023June 17, 2023

Unhoused Americans have few places to turn when death is near

Sherry Campbell, director of Welcome Home, stands with former resident Clint Jackson outside the hospice and medical respite home in Chattanooga, Tennessee, on April 2, 2023.

By Hannah Grabenstein

A few years ago, Mark Adams was diagnosed with colon cancer. His doctors didn’t want to operate, he said, because his recovery could be too risky without a clean place to recuperate. He was living on the street.

Soon, it was too late, his cancer too far along. That’s what they discovered after he moved into Welcome Home, a facility offering long-term medical respite and end-of-life care for unhoused adults.

Instead of getting better, he’ll likely live out the rest of his days there – one of a small number of places in the United States that offers unhoused people a comfortable and dignified option when they are terminally ill.

Sufficient end-of-life care in the United States is a growing problem for the general population, as America’s aging baby boomer generation needs more intensive and expensive help and supply isn’t keeping up. For many unhoused adults — who frequently lack a strong social safety net — long-term medical or hospice care are effectively inaccessible. In the absence of publicly funded solutions, private organizations and nonprofits are trying to plug the gaps, but the patchwork network of end-of-life care homes is far too limited to address the need.

On a mild spring Sunday, Adams worked on a painting in his cozy, eclectic room – filled with vinyl records, potted plants and his own art – while his friend Clint Jackson relaxed nearby. Up the hill, Standrew Parker rested on a wrought iron chair in his yard, soaking up the early afternoon sun and chatting with his new roommate, Heidi Motley. Parker, 40, and Motley, 58, are staying there while undergoing treatment for cancer.

PXL_20230402_200753934.MP — Mark Adams displays his artwork in his room at Welcome Home in Chattanooga, Tennessee, on April 2, 2023.

Across the country, there are a handful of facilities like Welcome Home, which sits on nearly five forested acres in Chattanooga, Tennessee. Some 1,300 miles west, there’s Denver’s Rocky Mountain Refuge for End of Life Care. Salt Lake City is home to The Inn Between, while Washington, D.C. has Joseph’s House. In Sacramento, Joshua’s House plans to open its doors this fall. Dozens more offer medical respite beds, generally for those undergoing long-term medical treatment. But outside of these organizations, experts told the PBS NewsHour that there are few other places where people experiencing homelessness can go for end-of-life or hospice care.

These facilities aren’t massive – Welcome Home has three medical respite rooms in addition to its four hospice beds, and is opening another house with an additional three rooms this month. Rocky Mountain Refuge, the smallest and newest of the group, has three beds solely for end-of-life care.

The need for those beds is great: People who are homeless are at far higher risk for many illnesses and conditions, such as heart disease. Medical research also shows that unhoused people’s bodies have often aged as if they were at least a decade older.

Being without a home is itself “a life-limiting diagnosis,” as Hannah Murphy Buc, a researcher who studies palliative and end-of-life care for people experiencing homelessness, wrote in the journal Caring for the Ages.

When someone is already in poor health, there are basic obstacles of living without a home – not having access to a fridge to store medications or the ability to secure narcotics for pain management, for instance. Some people without permanent addresses, like Adams, have reported they were denied treatment for their cancer due to the physical demands of recovery.

“Hospice and palliative care, but particularly hospice, is completely reliant on having a place to receive it,” Murphy Buc told the NewsHour.

For Adams, 51, living at Welcome Home has been life-changing, even though he often feels sick and he says he knows the cancer will likely kill him.

“I feel good here. I feel like I’m welcome here,” he said.

What we know about deaths among the unhoused

There is no official national data on where, when and how people experiencing homelessness die. According to an analysis by the National Health Care for the Homeless Council (NHCHC), at least 5,800 people died while experiencing homelessness in 2018. That’s almost certainly an undercount, and the report noted the actual number could have been anywhere between 17,500 and 46,500 deaths for that year.

With more people expected to become homeless and as that population ages, that mortality figure expected to rise, said Dr. Margot Kushel, director of UCSF’s Center for Vulnerable Populations and Benioff Homelessness and Housing Initiative.

“The truth of the matter is most of the country is entirely unprepared for this,” Kushel said.

PXL_20230402_202437333 — An inspirational sign is displayed near a cookie jar in the kitchen of Welcome Home, in Chattanooga, Tennessee, on April 2, 2023. Residents gather nightly for dinners provided by volunteers as a way of fostering community.

Local reports can help explain what’s happening currently to those who can’t access end-of-life care. Across several months in 2021, deaths among unhoused people in San Francisco occurred primarily outdoors, in places like encampments, vehicles or on the street, a report from the NHCHC found. Others died in medical facilities; motel rooms, either rented by the person or as a shelter-provided space; other people’s homes; and homeless shelters.

Similarly, in King County, Washington, about half of the people experiencing homelessness who died in 2018 perished outdoors, according to a report from the council. Only 26 of the 194 deaths occurred in residences.

A 2022 report from the Colorado Coalition for the Homeless found that among the unhoused individuals who die of so-called “natural causes,” 30 percent died in hospitals or other medical facilities, and 25 percent died outside.

“That means under a bridge, on a sidewalk, behind a bush, in a tent,” said Brother James Patrick Hall, the executive director of Rocky Mountain Refuge.

While in prior decades people experiencing homelessness may have died from acute causes, such as violence or illness, the aging population of unhoused people is now living with the chronic conditions that plague many seniors, such as COPD, heart failure, strokes and cancer.

“These folks often need a lot of personal care. They have pain issues … It’s like a disaster, to be honest,” Kushel said. “What we found in Oakland is [that] a lot of folks just died on the street, short of breath, in pain, incontinent.” Others were admitted to hospitals, and some ended up at nursing homes or acute care facilities, “but it wasn’t where they wanted to be.”

When given a choice, people overwhelmingly want to die at home, according to Murphy Buc. Death at home can lead to healing in relationships and help soothe those left behind. But even when that’s an option, it can be draining for those doing the caretaking, she noted, even with hospice nurses visiting a few times a week.

In the U.S., “we don’t do death well,” Murphy Buc said.

The problem of older people dying on the streets, in motel rooms and in cars is the ultimate result of disinvestment in affordable housing, skilled nursing care and health care, experts at the NHCHC told the PBS NewsHour.

It’s not that people who become homeless are falling through the cracks, said Barbara DiPietro, senior director of policy at the NHCHC. Instead, people are often forced into “gaping caverns” where underfunded social safety nets, such as Medicaid and public housing, fail to catch them.

An older adult who has worked as a manual laborer her entire life might have a stroke and lose employment, be unable to pay rent and end up without a home, said Caitlin Synovec, senior program manager with the council’s medical respite team. Shelters frequently can’t help people with enhanced medical needs, so they have nowhere else to turn.

The unhoused population is also disproportionately vulnerable, low-income and people of color — all groups who have historically experienced disparities and may distrust the nation’s health care and social services systems.

In addition to that added barrier, people may just not know they have medical respite and end-of-life care options, Murphy Buc said. Many of the current residents of these facilities were referred there by health care professionals or social workers, but had not previously heard of them.

‘Health care isn’t housing’

Having a home, in and of itself, can be considered a form of health care, advocates say. Those who work or volunteer at care homes sometimes witness very sick people make dramatic recoveries simply because they have a safe, comfortable and stress-free place to live.

Though each facility operates slightly differently, these homes offer more than just a physical address, providing services like palliative care, case management and transportation. Volunteers and staff can remind residents to take medicine, ask how they’re feeling, and, crucially, drive them to appointments.

Before Standrew Parker lived at Welcome Home, he would have to travel to the hospital from his mother’s house to receive five days of cancer treatment every few weeks. In addition to being an unwelcoming environment, her house was about 45 minutes away by rideshare, which cost around $60 to $70, he said. To avoid the trip back and forth, he would instead often spend his days living outside the hospital.

“We didn’t have that money. So I was in and out, just like hanging out. If I had multiple appointments for days on end there, I just [stayed outside the hospital]. I would have to or I wouldn’t get the correct shots or the treatment,” Parker said.

PXL_20230404_144147425.PORTRAIT — Crystal Jones, nurse case manager at Joseph’s House in Washington, D.C., works at her desk on April 4, 2023.

Now, volunteers drive him to and from his treatments, and during his weeks off from chemotherapy, he recuperates in his room at Welcome Home. Beyond the care he receives, the empathy and compassion from staff and volunteers helped shift his entire perspective on healing.

“It’s like a world of difference between surviving and actually being able to get well,” he said.

A crucial goal of each facility is to establish a sense of normalcy for people whose lives have been thrown out of balance. Welcome Home serves dinner every night, where residents can gather and rib one another. People living at The Inn Between can join the resident council, which offers both community and a way to effect change, such as what times coffee is available. For the patients who recover enough, these homes can help them adjust to life outside of the facility so they can leave.

When NHCHC began their medical respite programs in the late 1980s, they were originally intended as short-term stabilization. However, some of the programs that specialize in medical respite have begun to consider incorporating end-of-life and hospice care into their models to fill the gap, said Julia Dobbins, director of medical respite at NHCHC’s National Institute for Medical Respite Care.

In contrast, patients without somewhere to go sometimes cycle between a hospital and the street, being readmitted when their problems are acute enough to warrant immediate care, and released when they’re stabilized, Murphy Buc said.

Sending still-sick people back to the streets is called “patient dumping,” and “it’s horrible,” Kushel said. But, she added, the solution can’t be that people live at a hospital for months on end until they die. That’s an inefficient use of resources, not to mention that it’s unlikely to be where a patient wants to spend the rest of her life.

Hospitals don’t want to deny people care, Kushel said. When she heard about Adams’ doctors refusing to treat his cancer while he was experiencing homelessness, she noted that his situation was not uncommon. Doctors worry about harming people who don’t have access to long-term, safe and clean care, but it doesn’t make it an easy decision.

“It happens all the time,” Kushel said. “And when you speak to the surgeons, they actually feel terrible about it.”

In the long run, even medical respite doesn’t solve the problem of where people can live, said NHCHC’s DiPietro.

“We often say housing is health care. Absolutely,” she said. “Unfortunately, health care isn’t housing.”

For many, providing medical respite or end-of-life care to people experiencing homelessness with their own limited resources can feel like a Sisyphean task.

For every person given a bed, there are countless others who need and can’t access one. Each organization can only serve their local community, leaving hundreds of people or more to die on the street nationally each year.

Beyond what the organizations receive from state and local funding, there’s little — if any — government funding for long-term medical care or end-of-life care for people with no fixed address. These organizations’ funding models are largely reliant on grants and donations, without long-term stability.

“It’s local advocates who are seeing the suffering of their community members, and so they’re creating these programs that are funded by the good of people’s hearts, and that’s it,” Dobbins said.

Rocky Mountain Refuge, which opened its doors a little over a year ago, struggles to find enough funding to stay open, Hall said. That’s an experience echoed across the country.

“One of the stresses for us here is, every year, are we going to be able to keep our doors open because of the funding?” said Kowshara Thomas, director of Joseph’s House in Washington, D.C.

Founded in 1990 during the HIV/AIDS crisis, the three-story house in a quiet residential neighborhood has served community members dying of the disease for decades. This year, however, they lost a major grant that comprised 30 percent of their revenue, which worries Thomas. Other medical respites in the D.C. area receive Medicaid funding, and larger organizations are often better positioned to write grants and secure funding. But Thomas says Joseph’s House, with only eight beds, is too small to follow suit.

PXL_20230404_135856870 — A memorial wall of former residents is displayed at Joseph’s House in Washington, D.C., on April 4, 2023.

The organization has largely, though not entirely, pivoted from end-of-life care to medical respite, something Thomas sees as both a result of better health among their community and a way for them to provide continuing care for people after they’re discharged. Joseph’s House has around 25 community members for whom they provide supportive services.

Thomas is also proud of the community that Joseph’s House anchors, with former residents coming back for meetings, social time and sometimes additional long-term or end-of-life care.

“Having a place where you can feel safe and get the support — the medical and the psychosocial support — is really what helps our community,” Thomas said. “Joseph’s House is, for some of our residents, the first time they’ve ever had family or felt like they belonged somewhere and they could just be who they are.”

Complete Article ↪HERE↩!

April 30, 2023April 29, 2023

Surviving the Death Talk With My Kid

By Amil Niazi

The first time death came up, my son was asking about an old photo of my dog Jupiter. Jupiter, an American bulldog I rescued from L.A. just before my now-husband and I moved in together, died just a couple of months before my son was born. For several weeks I cried, unmoving, on the sofa. Agonizing over my loss and worried that my joy about giving birth was being overshadowed by my sorrow, I was nervous that heartbreak was seeping deep into my bones.

When he asked, I was so excited to tell my son, who was 4 at the time, all about this amazing dog’s life. It turned out he was far more interested in his death.

Like so many other hard conversations we’d had before, I initially tried to be as matter-of-fact about dying as I could be. I described how Jupe had been in a lot of pain, that the doctor said he was likely very ill, and that the kindest thing we could do for him would be to relieve him of that pain as peacefully and quickly as possible. “What was he feeling when he died?” my son asked. I wasn’t sure how to answer. In that awful, quiet moment, I only knew how I felt, and I was shattered. So I told him truthfully that I didn’t know what it feels like to die, but as I’ve done a million times before with things I’m not sure of, I promised we could get some books from the library and try to find out. But I knew deep down he wasn’t interested in hypotheticals and esoteric explanations about death. He wanted to know it, to see it up close and poke at it in the same way he investigated the bugs in our backyard.

The books at the library were unsatisfying, but he didn’t have to wait long to find out what the real thing felt like. The next year for our family was anchored by death, and the “what ifs” were left far behind.

Just a few months after our conversation about Jupiter, my husband’s father died. He flew home to be with his family in the very darkest part of the morning, and I sat up waiting for the sun to rise, hoping the light would help me make sense of what was happening, both for me and for the kids. My daughter was just a toddler, but my son — he was that very curious, very aware 4-year-old who would wonder where Daddy had gone and why.< This time I didn’t feel the need to explain as much; I just let him see for himself how death reshapes the room as my grief filled our tiny home like my tears were a million heavy glass balls. Loss was no longer something atmospheric, it was grounded by this now-empty hole in my husband; it became a window through his heart that he tried to hide but couldn’t. Now that death was suddenly tangible, we started talking about it a lot more, but it wasn’t until my mother-in-law died eight months later that the real, unraveling questions about it came. “Does everybody die?” Yes. “Will you and Daddy die?” Someday, yes. “Will I die?!” Yes, but … “When?” Not for a long time. “Is there anything after we die?” I don’t know.

Those were hard. I wanted to tell him the truth — I think kids are owed at least that much. My husband actually had to stop me from answering “When will I die” with something a little too honest. I just felt he deserved at least my attempt at the full picture of what it means to be alive, of the true price of this incredible experience. That a long life is not promised, it’s only what we hope for, and when and how we die is something no one knows. That death is arbitrary and often meaningless, and how finite our lives really are. Would I be denying him something fundamental by not making all of those things clear? Or was it actually cruel to burst that bubble of innocence for a kid who adamantly believes in Santa and the Easter Bunny? So instead I told him how lucky we are that before we die we get to taste mangos and read our favorite books. That we get to swim in the salty ocean and collect smooth, green glass on the beach.

I worried a lot that first year if I’d been too forthcoming. I didn’t want him to feel burdened by this idea of loss, and I didn’t want him to be afraid. But I also wanted to offer an explanation for why it sometimes felt like the roof of our house was sagging under with grief. I remember when my own dad’s dad died, I was quite a few years older than my son, but my parents shielded my sisters and I from what was happening. All we knew was that suddenly everything felt different around the house and our once stoic dad was felled by a pain we couldn’t understand. I thought and still do think when the emotional tenor of the household changes so dramatically and instantly, it’s important to let everyone know why. Especially since the aftermath of death can feel like a punctuated silence. You’re not sure what to say or how to say it; grief can feel invisible, so naming it, talking about it is a necessary flare to send up, to be clear that this house is in mourning.

I reminded myself of what a privilege it is to watch each other grow and that in the inevitability of death is also a promise to relish life.

Sometimes it felt like he was prodding at us like a couple of worms he’d dug up, seeing which questions would make us recoil or squirm. He often recited that his grandparents had died like it was an animal fact or something he’d learned at school, as a reminder to himself that yes, something had changed this year, we really were different.

>The next summer, my son got really into space. We started talking about all the different galaxies and planets and stars, the bigness of everything around us and the smallness of us. And I told him, a few weeks after the memorial for his grandparents, that he, too, is made of stardust, that part of what’s out there is also in both of us. He loved the idea of being a part of something so huge and the thought that when you died, you might still leave something behind. I knew he’d been seeking that kind of comfort since our very first conversation about it, but I couldn’t promise him something I didn’t know to be true. In stardust though, I was finally able to say with confidence that after we die, we don’t just disappear.

It’s been a couple of years now, and we don’t talk about death as frequently. Some light has come back into our house, and I’ve noticed that my son isn’t as scared of the idea anymore. He understands how momentous death can be, but along the way, because we always answered his questions openly, honestly, and with care, it has become something normal. It’s as much a part of life as anything else, and he’s seen that firsthand now. The only thing that has really changed is that he won’t let me kill bugs in the house anymore because he says they deserve a long life too.

Complete Article ↪HERE↩!

December 28, 2022December 28, 2022

‘I will reflect on my own death – and try to conquer my fears’

— The thing I’ll do differently in 2023

‘It is death that makes life meaningful’ … Monica Ali.

I don’t want to be mawkish or indulgent. But I want to consider my mortality in order to live well in the years I have left

By Monica Ali

Have you ever spent time seriously contemplating your own death? I haven’t. I’m 55, in good health, exercise regularly, eat well and – barring the proverbial bus – have no reason to think death is imminent. Thoughts of my own mortality naturally arise from time to time but they’re easy to banish. After all, both my parents are still alive, forming a kind of metaphysical barrier. Not my turn yet! But one thing I will do differently in the coming years is to begin reflecting on my demise. Does that sound mawkish? Self-indulgent? Pointless?

Well, I won’t be picking out a coffin or selecting music for the funeral or tearfully imagining the mourners gathering. All that would be a waste of time and, like everyone else, I’m busy. With work, family, friends, travel, trips to the theatre, galleries, restaurants and so on. What I mean to say is that I have not lost my appetite for life. Why, then, do I wish to begin meditating on death?

For two reasons: in order to live well during whatever years I have left; and to begin to confront and maybe even conquer the fear that, thus far, has stopped me from having more than a fleeting engagement with the knowledge that death is the inevitable outcome of life.

There’s a well-worn trope about living each day as if it’s your last, or if you only had one year to live you wouldn’t choose to spend it at the office. That doesn’t quite chime with me. If I only had a year to live, I’d still choose to work. (I might try to write faster!) Nevertheless, it is death that makes life meaningful. In Howards End, EM Forster puts it like this: “Death destroys man: the idea of Death saves him.” The value of our days floats on the metaphysical stock market of ideas that we hold in our minds.

The idea of ceasing to exist isn’t easy to contemplate. But I don’t believe in reincarnation or an afterlife. I don’t believe that raging against the dying of the light is going to achieve anything. And ignoring the issue isn’t going to make it go away. In fact, it makes the prospect more, rather than less, frightening.

I first read The Complete Essays by Michel de Montaigne when I was at college, but it’s only now that I’m ready to take on this piece of sage advice: “To begin depriving death of its greatest advantage over us, let us deprive death of its strangeness, let us frequent it, let us get used to it; let us have nothing more often in mind than death.”

How will I go about it, then, this new contemplative practice? Place a skull or some other memento mori on the shelf above my desk? Fly to Thailand or Sri Lanka and visit the Theravāda Buddhist monasteries where photos of corpses are displayed as aids to the maranasati (mindfulness of death) meditation? Walk around graveyards?

I’ve recently rented an office where I go to write. There’s a huge picture window under which I’ve placed the desk. The window overlooks a Victorian graveyard that’s still in use. When I sit down, all I can see are the trees. But when I stand I have a view of the tombstones and, in the distance, the crematorium.

One day I’ll be gone, my body consigned to the earth or turned to ash. Sooner or later I’ll be forgotten. Truly accepting that revivifies life. It doesn’t make every moment wonderful, but knowing I will die is a source of strength to endure the difficulties, and a spur to be more present for all that is good and precious in life.

Complete Article ↪HERE↩!

October 24, 2022October 23, 2022

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↩!