Three years ago Palm Springs resident Richard Bass went to visit a friend who was in the hospital after experiencing a fainting spell at home. The elderly gentleman lived alone and shared his concern about what would happen if he experienced a debilitating health issue and was unable to call for help.
"I said to him I am worried about living alone as well," recalled Bass, 83, a retired educator who relocated from Los Angeles to the Coachella Valley in 2005. "During this conversation of both of us having the need for someone to check in on us, we came up with the idea of why don't we contact each other every day."
Each morning the two gay men will send one another an alliteration text for that day, such as Wonder Willy Wednesday, explained Bass. If they haven't heard from the other person by noon, they will call them on the phone to make sure they are OK.
"That's been going on now for three years. It is very rare that we have missed a day," said Bass. "It is magical, you know."
Such a personal care network is just one aspect of the advanced care planning people should undertake to delineate how they want to handle their personal affairs and what end-of-life health care they prefer to receive prior to such a time when they may be unable to communicate their wishes. For LGBTQ older adults, who may be estranged from their biological families, are single, or don't have children to look after them as they age, such pre-planning is especially crucial.
"Among heterosexuals the kind of default and what is expected is that family would be there to provide support, care, and to step in whenever it is needed. That is much less true among LGBTQ people," said Brian de Vries, Ph.D. a professor emeritus at San Francisco State University who is an expert on LGBTQ aging and end-of-life issues. "LGBTQ people are most likely to engage our chosen family members, mostly our friends."
As did the AIDS epidemic in the 1980s, the COVID pandemic has once again illustrated for LGBTQ people the importance of planning for one's end-of-life care, said de Vries, who has dual U.S. and Canadian citizenship. For gay men in particular, he said, the latest health crisis was a "been here before" experience.
Research he and several collaborators conducted after the start of the COVID pandemic in 2020 with a cohort of 1,143 seniors in Canada, of whom 153 identified as gay or bisexual, found that the LGBTQ participants were more likely to have engaged in advanced care planning since the pandemic than the heterosexual cisgender older persons. The research also found that LGBTQ older adults were more likely to have had care discussions with friends — 19.8% compared with 8.7% for heterosexual seniors — in light of COVID.
Another COVID-related research project de Vries was part of sampled 4,380 Canadians aged 55 and over. It also found high rates of advanced care planning among the 426 lesbian, gay, or bisexual seniors who took part.
"COVID-19 has emphasized the unpredictability of life; it is a careful balance between raising awareness of the steps needed to survive the pandemic, while also encouraging people to plan realistically for infirmity and end of life care post-COVID," de Vries and his co-researchers wrote in a January 2021 report about their findings.
But few in the study had discussed with their physician what their preferences were in terms of end-of-life care. Most expect it is up to their doctor to broach the subject, said de Vries.
"I think it is, in part, because of the structure of the medical appointment. It is really time limited," said de Vries. "You are there for a specific purpose or a specific ailment often. It is hard to fit in other things."
PALS program
De Vries, 66, who is gay, lives part of the year in Palm Springs, where he helped Bass launch the Planning Ahead For LGBTQ Seniors (PALS) program in 2013. Housed at the city's LGBTQ community center, the program teaches LGBTQ older adults about various end-of-life planning issues, from creating a will and establishing power of attorney to settle legal matters, to filling out medical directives with their health care providers that detail such things as if they want to remain on a ventilator or other device meant to keep them alive if they are comatose.
Bass, for example, has had a will for more than a decade and last updated it in 2018. He also has filled out an advance health care directive. One change he made is going from wanting to die at home to now being OK with being placed in an assisted living community that is LGBTQ-affirming.
"I was not willing, basically, to go to a place that would not be welcoming for me as a gay man. I wanted to remain home so I could spend my days authentically," explained Bass, who noted that there is now the LGBTQ-focused Stonewall Gardens Assisted Living facility in Palm Springs. "It is historic and just a miracle for me and for the community that we have somewhere safe where we can go."
One realization that has come from the roughly 5,000 people who have taken part in PALS is that many LGBTQ older adults have thought about their funeral arrangements and filled out the various legal documents for dissolving their estates, but few have given any attention to who will care for them if they become ill and need assistance navigating everyday activities like grocery shopping or taking care of their hygiene.
"People may have had legal documents done but have given very little attention to who would care for them in case of a health issue," said Bass.
Asking a friend or friends if they will provide such assistance is one of the seven conversations PALS participants are encouraged to engage in with their friend group.
"There is a lot of resistance to having them," Bass said of the conversations, from people being superstitious to not knowing who to talk with about the issue. "Other people said it was just too stressful to have that talk. The irony, of course, is if you do plan ahead for a real health emergency, it relieves the stress later on of not knowing what to do."
It is why the PALS program pivoted from holding in-person seminars and meetings to doing videoconferencing after COVID hit, so that the LGBTQ older adults taking part in PALS could still connect and have an outlet for interpersonal relationships, even if conducted solely online.
"One of our strategies for connecting with people is to develop a network of people looking out for each other. We call it a PALS circle, which is a group of people you know who get together once a week and chat," said Bass. "Getting together once a week is like going to grandma's house."
Jennifer Bing, 52, the director of philanthropy for the National Center for Lesbian Rights, routinely engages in conversations about estate planning and other matters related to a person's end-of-life concerns with donors to the San Francisco-based nonprofit and those interested in including it as a beneficiary in their wills. She and her wife, Lauren Papalia, 43, have had their own conversations about advanced care planning for their family.
The women, who are both queer, are moms to two college-aged sons — Cristian, 21, and Lamont, 18 — and to their 7-year-old Enzo. The family this year moved to Sebastopol, a more rural community north of San Francisco.
Their directives and legal documents have changed over the years as their three children have aged and there is less need to ensure they are financially cared for as they come into adulthood. After Bing's mother, who had Alzheimer's, passed away, she also redid her estate planning since there was no longer a need for a plan to care for her mother if she had died first.
"I think it started many years ago just in terms of who would take care of our kids. Who would have them if something happened to us? About seven years ago we decided to do more intentional planning around creating a living trust, putting assets in a trust, and creating a process as they got older," said Bing. "It is a document that could grow with us and do philanthropic giving as well as take care of our family and children."
Despite her professional focus on such topics, Bing acknowledged that when it came time to personally engage in advance care planning "it was still an overwhelming process. It is huge because it poses all these questions."
Even if a person doesn't fear their own mortality, they may be hesitant to discuss what their wishes will be in their final days, said Bing. But those conversations are invaluable ones to engage in, she argued.
"It makes you really think about your goals. I think it is an amazing practice people should do," she said. "It is not about your mortality. It is about how you want to live, because none of us are going to live forever."
While living in San Francisco, the couple had cared for an elderly lesbian friend. She died right before COVID hit, and despite her having a will, implementing her estate plans was challenging, recalled Bing.
"Probate is a nightmare," said Bing, whom the woman had named executor of her estate. "She had everything organized. She had a will and still it was a lot of work. When you don't have a will, it is even worse."
Self-empowering
While most people want to avoid it, taking care of one's estate and advance care planning can be self-empowering, said Bing.
"This is your life. Being able to not leave your death to somebody else's choices is a part of that too," she said. "You have worked all your life to create what you have created. Even if it is just a jewelry collection, and you want it to go to a certain person that is important to you, write that down. It is not easy but just a good process to go through."
She watched another close elderly lesbian who knew she was dying do just that in the time she had left. She didn't have children to leave her estate to, so the woman wrote out detailed plans for how she wanted to bequeath her assets. For seniors who own homes in the Bay Area, they possess considerable wealth in their properties, noted Bing, so how they pass that on will have a substantial impact if given to a friend or a nonprofit agency.
"It was wonderful to watch her go through this process of deciding where her resources would go and giving away her assets. I think it had a positive impact, to reflect on her own life," said Bing.
Oftentimes, the easiest end-of-life planning for people to focus on is creating a will, noted de Vries. But just as important, he said, is thinking about other aspects of what your life will be like in those final months you have left to live.
"People will say, 'Yes, we have done our will,' then fold their arms, sit back, and kind of be proud of themselves for having done that. As well as they should be," said de Vries. "But then you ask the question: what happens before you die in the months, years when you are in terminal decline? Who have you enlisted to help you at that period of time? That is where they kind of start looking down now, avoiding your eye contact. They are realizing they have given very little thought about that."
Just as the LGBTQ community rallied together to respond to AIDS and COVID, it also needs to come together to address aging issues, said Bass.
"The feeling I have about becoming a senior is we have to look out for each other as we did during the AIDS crisis. It is exactly the same thing; people are getting sick and they are dying," said Bass. "We are seniors with an opportunity to break down ageism and isolation."
This story was made possible by a grant from AARP to the News Is Out collaboration. For more stories in the Caring for Community series, click here.