Dr. Bob Uslander’s No. 1 goal is to provide people who are in the final stage of life with a “soft landing.”
To Uslander, who runs a Del Mar-based medical practice, that means focusing on patients’ dignity, quality of life, and peace of mind as they approach their final days.
A former emergency room doctor, Uslander said he launched his practice – Integrated MD Care – about three years ago after noticing gaps in the health care system, particularly when it comes to caring for elderly patients and those with serious illnesses.
His solution was a model for delivering health care that creates a deep connection between caregivers, patients and their family members. The care team includes a doctor, nurses and therapists, and works with patients in their homes.
While the health care system, including palliative and hospice care, is very compassionate and works to make patients comfortable as their lives end, said Uslander, what’s missing is someone talking to them about their options for their final days, and how they want to experience their end of life.
“No one is talking to them about how they want to die, and what they want that experience to be,” Uslander said. “They miss the opportunity to have a truly empowered, transformational and meaningful end-of-life experience. The conversations aren’t happening.”
Before launching his practice, Uslander said he set out to research end-of-life care and see what was available What he found was a gap in the health care system, which he is trying to fill. He said he is not aware of any other practice like his.
“We’ve proven the model, that it works,” said Uslander, noting that he has seen the results in the improved quality of life for patients and their families.
In 2017, Uslander began caring for Jane Gillenwaters of La Costa, who suffered from pulmonary fibrosis, a condition that left her wracked with coughing spasms, gasping for air.
Jane’s husband of 62 years, Ed Gillenwaters, said the family watched as Jane deteriorated and lived with fear, anxiety and discomfort, knowing there was no cure for her illness.
Uslander took over her care in the final weeks of Jane’s life, and there was an immediate change. Not only did Uslander make changes that left her more physically comfortable, such as finding her a new, more effective machine to dispense oxygen, and taking her off of medications that weren’t helping, but he also talked to her about her end-of-life options and listened to what she had to say.
“His care restored her personal dignity. The more she talked about what she was thinking and feeling the more relaxed she became,” Gillenwaters said. “What he did was set her free from terrible fear and anxiety that is too often associated with impending death.”
The change in Jane’s outlook in turn lifted a “crushing emotional burden” from her husband and children, said Gillenwaters. When she died, Gillenwaters said, she was relaxed and peaceful, and no longer struggling for each breath.
Uslander has assembled a team of nurses, doctors, social workers and therapists, who can offer a range of services depending on the needs and desires of patients. Those services might include massage or music therapy, nutrition assistance or acupuncture.
The practice is considered a concierge service, said Uslander, meaning that doctors and nurses are available by phone on a 24/7 basis.
Patients pay a monthly fee ranging from several hundred to several thousand dollars, depending on their specific needs. The practice does not accept insurance, because Uslander said, “the low reimbursement and onerous administrative burden reduces the ability to provide excellent care.”
Because his practice is privately run, said Uslander, he has the option of reducing or waiving fees where appropriate. He’s also launched a nonprofit, the Integrated Lifecare Foundation, to provide education and raise money to pay for end-of-life care for those who can’t afford it.
Gillenwaters said he was so impressed by the care provided for his wife that he has since joined the foundation’s board of directors.
“Families need to know that such an approach is available to make the ending of loved ones’ lives comfortable and dignified,” Gillenwaters said.
For those interested in learning more about Uslander’s care and treatment model, he is scheduled to give a talk from 6 to 7:30 p.m. on Tuesday, Jan. 8, at the Solana Beach Library, 157 Stevens Ave., Solana Beach. More information can also be found on his website, integratedmdcare.com.
If you are facing serious illness today or want to prepare for your own, or a loved one’s, illness in the future, you can tell your nurse, doctor and family that you want to talk about your wishes and what’s important to you. As we age, what matters most to us about our health care choices should become more important, not less, especially as we near the end of life. It’s important not just for us, but for those we leave behind.
Let me tell you a story to show you what I mean.
At 68, a woman we’ll call “Carmen” thought she was healthy — until she suffered a stroke and then a heart attack. Her husband, Eddie, a house painter, worried. How could they get Carmen the care she needed? How would they pay for it? Carmen told Eddie she wanted to avoid the hospital as much as possible, go to church and not be a burden to him.
Carmen represents the type of patient who nurses, doctors, social workers and other health care providers see every day. Yet, health care teams often serve people like her poorly. As a nurse, I’ve seen many people needlessly returning to the hospital over and over or spending their final days in an intensive care unit hooked up to machines they never wanted. But sometimes, when the right conversations lead to the right actions at the right time, the story has a better ending.
The Proactivity of Palliative Care
Fortunately for Carmen, her neighborhood community had a program that put together everything a person with a serious illness would need — proactively. This program drew together medical and nursing care with social work services to support the needs of the family grappling with serious illness. Carmen was relieved to learn that the program covered treatments to manage her pain and symptoms and also coordinated her care with her health care team. This is called palliative care.
The palliative care Carmen received was different than hospice care (available to people expected to live six months or fewer). Palliative care provides pain and symptom management until a cure is reached, or chronic condition management until death. Palliative care was an extra layer of support while Carmen got her other treatment.
Not only do people generally feel better with palliative care, they also live longer. Research shows that palliative care improves patient and family satisfaction, increases time spent at home and reduces the amount of time people spend in hospitals.
When Carmen took a turn for the worse and required hospice, her care team listened to what mattered to her and helped her plan accordingly. When it became clear that she was getting worse, the team helped her remain at home and comfortable, just as she wanted. She had time to be with her closest friends, and died with her family around her.
And that’s the point. We deserve to live out our lives on our own terms.
What Matters to You?
The John A. Hartford Foundation is committed to helping ensure that members of the public understand they have a key voice in how care is chosen and delivered. The Foundation supports several groups that provide helpful resources for patients, families and clinicians. This includes Care.Lab, a collective of leading national experts who helped develop scenarios like Carmen’s to illustrate the possibilities; The Conversation Project, which offers free starter kits to help define your wishes and advance directive guidance. If you want to learn more about palliative care in your community, visit getpalliativecare.org.
Improving care for people living with serious illness requires palliative care and — when needed — hospice services.
People should receive the care they want and know how to avoid the care they don’t want. Families should feel supported and better equipped to help their loved ones. Clinicians should know their patients are receiving care that aligns with the patient’s goals. Health care systems benefit from the person-centered care their clinicians deliver. This is the care we should all demand.
Death with dignity is a movement gaining steam.A June 2017 Gallup poll found that 73 percent of Americans supported medical aid in dying at a patient’s request, as long as it is painless.
Oregon is just one of six states plus the District of Columbia with laws in place that allow medical aid in dying. Doctor-assisted suicide will also become legal in Hawaii in January 2019. In 2018, 23 states entertained death with dignity legislation, and Maine is voting on a ballot initiative in 2019.
While the names of the bills vary — Death with Dignity, Medical Aid in Dying, Medically Assisted Dying — the bills are remarkably similar.
Death With Dignity: The Details
For death with dignity, participation by doctors or nurses is strictly voluntary. No doctor can be compelled to prescribe life-ending medicines, there are no government programs which will provide assistance and there is no database of participating doctors.
To qualify for a prescription for life-ending medications, patients must prove they are a legal resident of the state in which it is legal, be 18 or older, be mentally competent and diagnosed with a terminal illness that will likely lead to death within six months. Patients must also be able to self administer the medication. At least two physicians must determine all criteria are met, and several states with pending legislation require witnesses who are unrelated to the patient who have no financial interest in the patient’s estate.
Physicians must also inform patients of alternatives, such as hospice, palliative care and pain management techniques. Physicians may make a referral for psychological or psychiatric evaluation. The laws and bills also require the patient to make at least two oral requests with a waiting period of at least 15 days (20 in Hawaii) between requests, followed by a written request.
Controversy Still Present
Dr. Jamie Wells, a medical ethicist and a director of medicine for the American Council on Science and Health, said the debate over medically-assisted dying laws is difficult in part because we live in a binary culture which tries to reduce everything to black and white. But the individual situations where a law like this would come into play, she noted, are often gray.
“I wish we had more of an honest portrayal of how things happen in these circumstances. Nuances matter, and with these conversations about right to die and end of life, discussion is lost and progress is not made,” Wells said. “There are many shades of gray. Some people refuse further therapy. Sometimes trying the last-ditch chemo can be the cause of death.”
Australian scientist David Goodall made headlines in May when he traveled to Switzerland to end his life at age 104. He had at least one failed attempt to end his life at his home before traveling to Switzerland.
“When people have a failed attempt they can acquire new disease and illness which increases their suffering,” Wells said. “People who attempt to overdose on Tylenol, for example, can have profound liver disease as a result.”
Navigating Family Influence
End-of-life care is an area of medicine where a patient’s family often has an influence on care. But since death with dignity legislation requires non-family witnesses, patients aren’t pressured into ending their lives prematurely.
The opposite scenario happens as well — one where family members resist the patient’s desire to die.
“I’ve literally had a spouse say to me, ‘He can’t die until this date because that’s when the next check comes in,’” hospice nurse Alison Keeler of Washington state said. “Family isn’t always on board with a death with dignity decision. I became a hospice nurse because so often we were doing interventions on people that I felt were really hastening their deaths. They weren’t comforted. They suffered.”
Kristin Metzger of Maryland, another hospice nurse, has taken care of patients who had family members waiting on an inheritance and patients who receive the gamut of care because a family is depending on a Social Security check.
“I’ve seen people intubated, tube-fed, because there is financial gain,” Metzger said. “They’re the reason hospitals have ethics committees.”
Metzger stressed that terminal patients, regardless of whether they are in a state where medical aid in dying is legal or not, should not have to worry about suffering or pain.
“Is physician-assisted dying the answer or the Band-Aid? I actually wonder if we put our work and energy into addressing the root cause — if hospice isn’t actually the answer.” Metzger said. “Many people live longer on hospice because we’re managing their quality of life… If people truly understood what hospice and palliative care can provide for the terminally ill, no one would ever consider medical aid in dying.”
While Metzger, Keeler and Wells hold different opinions on death with dignity legislation, all three agreed it is important for families to discuss their opinions and wishes openly long before a crisis occurs.
“In a perfect world: Everyone has the right discussion at the right time when they can make the right decisions, but unfortunately people are messy and complicated.” Wells said.
Until Louisa’s accident, you could almost always find her working in her garden, pulling weeds, deadheading old blossoms, coaxing tomato vines up their stakes. Well into her 80s, she still made a full midday meal every Sunday for her family and an ever-shifting gaggle of neighbors, grandchildren, and friends — basically anyone who showed up hungry.
As vigorous as Louisa was, when she stumbled and fell earlier this fall, it changed everything. Landing awkwardly on the hard ground, her skull hit a paving stone, causing bleeding inside her brain that led to immediate unconsciousness. After Louisa was rushed to the local hospital, she underwent emergency surgery, but it yielded no improvement. Still unresponsive, she was transferred to a quaternary academic medical center for further evaluation and treatment. But there was nothing more to be done.
As her garden hibernated beneath piles of dead leaves and bits of snow, no one could believe this had happened — or imagine life without Louisa. The 180-degree pivot from healthy and upright to comatose left them breathless.
Family members encircled the hospital bed where she lay: broken bones set, minimal brain activity, a machine breathing for her. I asked them whether Louisa had an advance directive or a living will. Their silent stares were my answer.
It’s not an unusual situation, and they weren’t alone in saying no. In Virginia, where I live and work, nearly 5 million adults don’t have advance directives, including many of the patients I care for at the University of Virginia Medical Center. Nationally, a whopping two-thirds of Americans lack them. But this holiday season, it’s my hope to start to change those odds.
Advance directives are formal declarations of your last wishes, should the unthinkable — a fall, stroke, car accident, aneurysm, heart attack, or other incapacitating event — befall you. They explicitly lay out the extent to which you want lifesaving measures (breathing and feeding tubes, resuscitation if your heart stops, and the like) when other remedies won’t improve your odds of survival; or when, as with Louisa, there isn’t anything more than can be done and you will likely face your remaining days in an unconscious, possibly vegetative state.
In my practice as a palliative care nurse practitioner, in my classes teaching nursing and medical students, and even when I share meals with friends, I often work advance directives into the conversation. Some people twist in their seats, fumbling through their answers, while others are curious and upfront about what they do and don’t know. Still, I press.
I keep a stack of “Five Wishes” worksheets — a simple pen and paper guide to creating an official advance directive — in my office, car, briefcase, even in the guest rooms of my home (Harvard Health Publications, AARP, and others also offer them). And if I don’t have the paper copies on hand, a quick email later and my friend, colleague, student, patient, or family member has what’s needed to get started.
Advance directives get a lot of bad press for being macabre. But I urge you to think of them as love letters to the people you adore. In these documents, you define your last wishes, set parameters for care, and help those who will be caring for you make decisions based on what you want and, just as important, what you don’t want, when curative treatments are off the table.
These love letters safeguard those thrust into the difficult position of making medical decisions for you — some about life and death — so they don’t have to be guided only by well-meaning strangers like me, as Louisa’s family and countless others have had to do.
Advance directives are easy. They don’t take long to complete. Anyone can create them.
As families gather for the holidays, fretting about food, finances, gift giving, politics, and more, I urge them to ask everyone around the holiday table — middle-aged, old, young at heart, and everywhere in between — the following questions. (They’re the same ones I ask my patients who find themselves at various stages in the trajectory of life-limiting illnesses, bringing into razor-sharp focus what matters in the time they have left.)
What would you want done for you if the unthinkable happened — like a catastrophic fall or a major stroke — and treatment options are limited?
Would you want every medical intervention, or only some?
Do you want to die in a hospital or, if it’s possible, at home?
Are there things undone you wish to tend to, people you want to see, and things you want to say?
Are there things you fear, wonder, or wish for?
Essentially, what really matters to you?
When death is imminent, perhaps a matter of days or weeks, patients I’ve had the privilege of caring for often want to leave the hospital and spend their final days in a favorite chair, with a favorite pet, satisfied by favorite meals in the comfort of their own home. Others wish to express their love and gratitude for those around them, imparting last thoughts with purpose, dignity, and humanity. Some want to connect with a loved one with whom they’ve sparred.
To do any of this, they need to declare their intent.
No one needs to wait until death is near to understand or crystallize their last wishes. There’s no time like the present — and no time like the holidays, when family and friends gather — to ask those you love, as well as yourself, about what they want the end of their life to look like, no matter whether that day seems far away or if it might be closer.
In the United States, there’s probably no better way to spoil cocktail party chatter than by introducing the subject of death, dying or the end of life.
Yet, in the same way that the birth process went from a doctor-run event to a movement in which women took charge of their own pregnancies and deliveries, there is growing interest in thinking about the dying process. In part, that’s because the large population bulge of boomers is reaching a point where the end seems not that far away. But also, many people have had the experience of sitting at the bedside of a dying person without the slightest clue what to do.
And increasingly, classes, seminars, and programs are available that try to help people understand how to comfort those in the last stages of life.
Sister Rose Mary Dougherty, 79, a member of the religious order School Sisters of Notre Dame, calls this companioning the dying and she decided to make it a focus when, years ago, she found herself sitting at the bedside of a dying priest who was a friend. Next to her sat another friend, also a priest.
She watched as the two priests sometimes prayed and sometimes were quiet, together, doing nothing at all. At one point, the priest sitting next to her turned and said: “I don’t know what a priest should do anymore. I don’t know what I’m to do here, but I can be here. Maybe that’s my final vocation.”
That’s when it hit her: Even people trained in comforting feel a sense of helplessness when a friend or family member is dying. But she also resolved to do something about it.
So in 2008, Dougherty created a nine-month Companioning the Dyingtraining program, based in Baltimore. Today, the program provides instruction for hospice workers, caregivers, volunteers and family members on how be with someone in their final months or days.
Companioning the Dying concentrates on something that nearly everyone will have to face at some point in their lives. In the past, it was common for elderly family members to live with their adult children as they aged. Their last days were spent at home, surrounded by loved ones.
Society is different now, at least in many places in the industrialized West, where a youth-focused society has pushed end-of-life concerns mostly out of sight. As a result, people can feel unprepared — even panicked — when they have to deal with end-of-life issues.
“We’ve lost the place of dying,” says Jan Booth, a hospice nurse who also helps out with the Companioning the Dying program. “How do we bring aging and illness and dying into some kind of context that doesn’t change the grief that’s inherent, but changes our capacity to be with it?”
Dougherty started with a few basic principles. One was to help caretakers learn to become better listeners. “It’s sitting with a loving alertness,” she says.
Dougherty, now emeritus program director of Companioning the Dying, lives in her order’s residence in Baltimore. Her voice is weakened by Parkinson’s disease, yet her piercing blue eyes demonstrate the same alert presence that she teaches.
Companioning the Dying has something of the feel of group therapy — with readings, exercises and discussions — in which participants can talk freely and without judgment about anything they might have experienced with the dying, Peter Fitz, 75, says. He wanted to get involved in hospice volunteer work and did the program three years ago.
“Every death, and every person, is different,” says Fitz, a retired English professor. “The crucial part is to find out, with the individual not only on any given day or a particular hour or minute,” where they are. The task, then, is “emptying out your suggestions for people and learning to listen in a different way.”
Those “suggestions” can often end up being the worst thing people can do, says Sallie Tisdale, author of “Advice for Future Corpses (and Those Who Love Them).” People often say things such as “Are you sure the doctor knows what he’s doing?” and “God always has a plan,” she says. “Please don’t say those things.”
She suggests something similar to the Companioning program. “People ask me how to prepare. I say, stand at the doorway and take a self-inventory. Try to drop your own agenda. If the person says, I want to eat ice cream and watch a Yankees game,” just accept that, and do that for them she says.
Lourdes Salazar, a caretaker by profession who also volunteers for her church, St. Camillus in Silver Spring, says that one exercise her Companioning the Dying group did was to choose a day and behave as if it is your last day on Earth. She went out to lunch with her son and told him what she was doing. “I never realized how wonderful it would be to have a lunch with you on my last day,” she told him.
One of the main advantages of Companioning the Dying say participants, is the way it helps them all appreciate their own lives. “When you change your concept about the meaning of death, your life changes,” Salazar says.
Even a nurse who has spent most of her career working with terminally ill children and their families has found that the experience of the course helped her when she was faced with five nearly consecutive deaths in her own family. Janet Will says she thought she was experienced in handling difficult situations. But having the Companioning program allowed her to focus on her own grief and avoid the role of the professional.
“The people who love you the most don’t want to see you grieving any more,” Will says. “Where do you go with that?”
Xaverian Brother Michael McCarthy says that his group ended up being a “tremendously rich melting pot” of people from all walks of life. The group covered details such as what is involved in the dying process, but it also offered time to reflect on being compassionate with oneself even as you help someone else.
It’s not about taking a person’s blood pressure, he says. “You’re going to be present, and if you’re not present with yourself, then your presence isn’t going to be as meaningful” to the dying person.
Peter Fitz remembers visiting a man at a hospice in Baltimore. Fitz didn’t know him. The man was in a “highly agitated” state and couldn’t speak. Fritz asked him if he could nod his head. “Can I take your hand?” he asked. The man nodded yes. The two held hands until the man finally fell asleep.
“In a funny way, he gave me comfort, too,” Fitz says. “It’s an experience that in some important way we shared.”
Humans are sexual beings. This urge does not stop when the clock strikes 60. Or even 90.
Young adults may deny older relatives are having sex, but sexual activity is a strong indicator of healthy aging and vitality. In fact, sexual activity is roughly equal to climbing two flights of stairs.
Sex education and research use a medical model of sexual health focusing mainly on pregnancy, sexually transmitted infections (STIs), and sexual dysfunctions. However, sexuality is complex. Beyond genitals and Kama Sutra-like positions, it considers sexual and gender identity; sensuality; sexual response; intimacy; and positive and negative ways we use our sexuality.
As we age, the complex interplay among biological, psychological, cognitive, socioeconomic, religious and even societal factors, contribute to changes in our roles and responsibilities. For example, changes in physical or cognitive health over time can create differences in analytical thinking, mobility, and health care needs. We also experience changes in work, social and family roles and responsibilities over time. Examples include transitions from working to retirement, parenting to empty-nesting, child-rearing to caring for aging parents or partners.
These changes may alter our sexual desires, expression and the frequency in which we engage in sexual activities with partners. For example, sexual functioning and activity may decrease over time, but having open communication with a partner who is responsive to our needs can increase our feelings of intimacy and desire, and in turn stimulate sexual activity.
Evolving social support and activities may change opportunities for sex and intimacy. Partners may disappear through death or moving away, or appear, such as when meeting new people after moving to an aging community. Over one-third of adults over age 65 use social media or internet technologies. These tools may expand sexual interest or activities by increasing access to sexual aids and partners.
Sex after 60
There are myths, misconceptions and stigma associated with aging and sexuality that hinder older adults’ ability to openly communicate with family, friends and health care professionals. This misinformation limits their access to sexual education, health care, and ultimately, their sexual rights.
The first myth is that older adults are not as sexually attractive or desirable as their younger counterparts. While an 80-year-old may not be as appealing to an 18-year-old, he or she may be very desirable to peers. More importantly, he or she may feel more sexually desirable and confident than their younger self.
A second myth is that older adults lack interest in and desire for sexual activity—and that they are somehow asexual. Research from ongoing national surveys support the ideas that sexual interest, desires and behaviors can decrease over the life course. For example, among women ages 57 years and older, over 80 percent of participants expressed interest in having sex, but less than two-thirds of women surveyed perceived sex as “important,” and fewer than half reported having sex in the previous year. However, the reality is that these trends are not universal among older adults. Results from another recent survey found that 39 percent of men and 17 percent of women ages 75 to 85 years are sexually active.
Another myth is that older adults are so medically fragile that sexual activity is dangerous. This is simply not true in many cases. Recent studies have shown that healthy older adults are more likely to have sex. Even when chronic illnesses are present, sexual abstinence is not a foregone conclusion. For example, a 2012 American Heart Association statement contains evidence-based recommendations about sexual activity among patients with specific cardiovascular conditions. The recommendations generally advise assessing risks with a doctor and disease management, rather than abstention.
There are well-documented relationships between common medical conditions such as heart disease or diabetes and treatment-related effects on sexual functioning. Yet, older adults and their health care providers are not discussing sexual concerns during routine care. Missed opportunities during visits deprive older adults of access to newer treatments and other best practices in sexual medicine, which can impact their mental and physical health.
A bigger problem may be ageist attitudes among providers and internalized ageism in their patients that may interfere with sex education and application of newer standards. The result is that many believe older adults are uninterested in, or lack desire for, sexual activity and cannot engage in these activities.
Love has a lot to do with it
There is more to sexuality than physical acts. While much of the existing research focuses on sexual activity and intercourse as predictors or outcomes, most older adults also desire companionship, intimacy and closeness. Non-intercourse-focused activities, such as hand-holding, cuddling and massage, have not been studied as much as intercourse. Yet, there is reason to believe that they can enhance intimacy. Research about physical and mental health outcomes resulting from older adult sexual activity reveals additional benefits, including reduced cognitive decline, loneliness and depression, and improved reported health status, physical functioning, and other aspects of quality of life.
Discussions should promote understanding about sexual risk behaviors for STIs and effects of physical and cognitive or psychological aging on sexual health and sexuality. To maintain or improve older adults’ sexual health and well-being, health care providers should provide safe and welcoming environments for patient-provider collaboration, resources and interdisciplinary referrals to clinical social workers, sex therapists, physical therapists and other allied health specialties.
While enjoying her seventh decade on the planet, Donna Personna knows her remaining days are numbered. Yet the prospect of her demise doesn’t scare her.
“The end question. ‘The end.’ It’s not a touchy subject for me. I’m irreverent,” said Personna, a transgender woman who grew up in San Jose and now lives in San Francisco. “I have been on the planet for 72 years. I learned long ago this was going to come.”
Personna, a beloved drag performer, playwright, and hairdresser, credits her Mexican heritage with teaching her that death is a part of life. She pointed to the annual Dia de los Muertos holiday — the Day of the Dead in early November — as one example of how, from an early age, she was taught to embrace one’s mortality rather than fear it.
“I am not worried about it. It doesn’t scare me,” said Personna, who graduated with honors from San Jose State University and, for years, owned her own hair salon in Cupertino, which she sold a while back but continues to cut hair at once a month for longtime clients.
Born into a large Baptist family with 16 siblings, Personna remains close with several of her older brothers and their families in the Bay Area. She is confident she can rely on them in the case of emergencies or if her health deteriorates.
“Some of my nieces said, ‘You can live with us,'” said Personna, who has designated one of them the beneficiary of her estate.
Her Plan B, however, is to move into a pueblo outside Guadalupe, Mexico where her Social Security check and personal savings will be worth more.
“I want to spend the rest of my days in Mexico. I don’t want to die in San Francisco,” said Personna. “I am longing to go there.”
Confronting the end of one’s life isn’t easy for the majority of seniors, whether LGBT or straight. Most have not declared an executor for their estate, let alone discussed with their physician what sort of care they want in their dying days.
“It is rooted in the death phobia that North American culture has,” said Brian de Vries, a gay man and professor emeritus of gerontology at San Francisco State University who is a leading expert on end-of-life issues among LGBT seniors.
There are an estimated 2.7 million Americans who are LGBT and 50 years of age or older. Of that age group, 1.1 million are 65 and older. By 2060 LGBT elders in the U.S. are expected to number more than 5 million.
This generation of LGBT seniors differs from its heterosexual counterpart in significant ways, according to aging experts. Most of the LGBT seniors experienced discrimination not only in their day-to-day lives but also in medical settings due to their sexual orientation or gender identity.
LGBT seniors are oftentimes no longer in touch with their birth families, having been ostracized after they came out of the closet. And many don’t have a partner, spouse, or children of their own to rely on as they age.
“The issues around aging alone are particularly meaningful in LGBT seniors,” said Lisa Krinsky, 55, a lesbian who is the director of the LGBT Aging Project at the Fenway Institute in Boston.
And in the case of many older gay men, they lost their families of choice, whether it was their friends, partners, or spouses, to the AIDS epidemic. Thus, they are more likely to be aging alone. And if they are living with HIV, they are largely unprepared for their retirement years having believed they would have died by now.
Dearth of research
For LGBT seniors, living alone “sets them up to more likely need institutional care as one gets older,” said Daniel Stewart, a doctoral student and adjunct professor at Saint Louis University in Missouri.
Stewart and his colleague, Brandy Fox, a Ph.D. student at the university’s Center for Health Care Ethics, presented their research on LGBT older adults’ end-of-life perceptions and preparations at the Gerontological Society of America’s annual conference, held last month in Boston.
“There is not a lot of research on LGBT end of life,” noted Stewart.
Talking about the end of one’s life can be exceedingly difficult for LGBT seniors, according to aging experts, because of their lack of trust in their health care providers or not having close familial or social connections, leaving them without a family member or friend they can turn to and discuss how they want to be cared for as they age.
“We know gay and lesbian seniors delay getting care,” said Kysa M. Christie, Ph.D., a clinical psychologist at the Veterans Affairs Boston Healthcare System during a panel at the aging conference focused on palliative and end-of-life care for LGBT older adults.
The reasons can vary, said Christie, from internalized homophobia and heterocentrism to stress-related stigma and poverty. It is estimated that one in five LGBT seniors, she said, “have no one to call in a crisis. Compare that to one in 50 for heterosexual seniors, so that is a stark difference.”
Fox and Stewart interviewed 17 LGBT seniors living in the Midwest about end-of-life issues. The cohort expressed concerns about being a burden as they aged and largely had unfavorable views of health care settings, particularly religious affiliated hospitals.
As one 78-year-old woman told the researchers, “Me and the medical profession do not get along,” recalled Fox.
De Vries and his colleagues in the field of LGBT aging call the lack of discussions about one’s palliative care needs, from who will be one’s power of attorney to what a person’s advance directives are for their medical care, “the missing conversations.” It is a subject that seniors must repeatedly address as their circumstances and choices may change as they age.
“I like that it is plural, as once you have the conversation people think you are done with it,” said de Vries. “It is hard enough to have the conversation. And once you have it, you want to wipe your hands dry and move on. As if that is it; it is one of many conversations people need to have, I think.”
For several years now de Vries has been involved in research in Canada looking at end-of-life issues among LGBT seniors. In one paper de Vries co-wrote, and is under review at the International Journal of Aging and Human Development for inclusion in a special issue on LGBT aging, he and his colleagues note that evading end-of-life discussions “keeps death ‘in the closet’ — along with one’s hopes, fears, and wishes about their end of life.”
The issue struck close to home for de Vries six years ago when his husband, John Blando, Ph.D., who is also a professor emeritus at SF State having worked there as an instructor/adviser in the Department of Counseling, was diagnosed with Parkinson’s disease. The men, both 62 and together 33 years, began to seriously discuss end-of-life issues, such as how to care for each other, as they drew up their wills and estates. When they moved four years ago from San Francisco to Palm Springs and had to revise their wills, they also completed their advance health care directives and durable powers of attorney.
“These naturally involve deeper discussions about end of life — at least that was our experience,” said de Vries. “Of course, elements of end-of-life discussions have dotted our other conversations as we talk about our plans and hopes for the future. I will admit to some discomfort in some of these conversations — about raising issues that we both fear, about releasing strong emotions — but they ultimately rest on expressions of love and opportunities to share.”
Since the couple retired to Palm Springs, de Vries has continued to work on end-of-life issues and helped launch a group called PALS, short for Planning Ahead for LGBT Seniors. It presents seminars where people can discuss a range of palliative care issues, from entering hospice care to planning one’s funeral.
“We have a funeral home director come in who is gay and talks about his experiences and the issues and the complications he has seen and how they could be mitigated if people only planned ahead,” said de Vries.
He also borrowed a concept from Britain known as a “death cafe,” where people meet socially to talk about death and dying issues. The gatherings are held at least once a month in Palm Springs and attract upward of 20 people or more.
“What is so neat is it is an in-your-face approach to it. It is not a ‘passing away cafe’ or something subtler. It is a death cafe,” said de Vries. “The idea is it just kicks the door open and brings it out of the closet and brings it into a public space and invites people who may not know each other to a safe space to have these conversations.”
For those LGBT people who have thought about how to plan for their end-of-life care, they tend to focus solely on matters related to their death or dying and not the months or years leading up to their final days. As an example, de Vries said when he once asked a focus group of gay men if they had a will or written out their funeral plans, most had. Hardly any of them, however, had determined who in their life would take them to the hospital or pick them up when, and if, they were discharged.
“It kind of provides an entry into this. It is a bit innocuous to ask someone, ‘I need a ride back and someone to sit with me for an hour, would you do that?’ People feel honored to have been asked and that someone cared enough about me to think I could help them with this,” said de Vries.
Asking for help isn’t always easy for LGBT seniors, noted the Fenway Institute’s Krinsky, even when they have family or friends who can assist them. She recalled talking once to a group of 20 older lesbians and asking them if they would be willing to go to the pharmacy for a friend.
“Eighteen said they would go for someone,” said Krinsky.
But when she flipped the question and asked the women if they would request help for themselves in getting their medications from the pharmacy, “only eight hands went up.”
Krinsky refers to such a model of care as “horizontal caregiving,” where a circle of friends, neighbors, and/or co-workers rely on each other to look after one another.
“We see tight families of choice taking care of each other as best as they can,” she said, “as people are concerned about how will I care for myself as I age.”
Such a structure, she said, upends the heteronormative approach of relying on one’s biological family to provide caregiving. It is expected that a married straight couple’s children and grandchildren will look after them in their senior years and that responsibility is passed on with each new generation.
“Right now, we a have a vertical model of multi-generational caregiving,” Krinsky explained.
Even though Personna lives in an LGBT-affirming city like San Francisco and has her family’s support, she is cognizant of the fact that there are still challenges that LGBT seniors must confront.
“Because of my orientation it is totally different than a heterosexual family and their end-of-life situations. So many things are already in place for them,’ she said. “By law you get things and your family connection is built in. My community, we have to build that and do the work. People my age usually don’t have what the heterosexual person has, like built in grandkids to come over and take you to lunch.”
Five years ago Personna moved from Cupertino into the city to help care for her friend, Bill Bowers, 71, a member of the famed gender-bending group the Cockettes whose outrageously designed jackets became a must-have for rock stars such as the members of the Rolling Stones and Led Zeppelin.
Bowers, a gay man who is HIV-positive, had been living alone at the Derek Silva Community when he had a stroke that left him unconscious for two days in his studio apartment. After that episode, he moved into a two-bedroom unit so that he would have a roommate who could look after him. After he lost his first roommate to cancer, Bowers asked Personna to move in.
“I can’t live alone,” said Bowers. “I asked Donna because she was traveling back and forth from the city to Cupertino on weekends to move in. She is here to be my caregiver.”
Personna not only ensures Bowers makes it to his various medical appointments and takes his daily regimen of medications but also provides companionship. They also share many of the same friends and can reminisce about their younger days in the city.
Bowers has designated an executor for his estate and thought about how he would prefer to be cared for at the end of his life. For example, he doesn’t want to be put on life support should it come to that.
He expects to live out his days in San Francisco, though Bowers said if he could afford it he would spend the rest of his days in Paris or somewhere tropical, like Tahiti or the jungles of South America.
Unafraid of death, Bowers is concerned about how he will die.
“I don’t want to suffer,” he said. “I watched my former roommate go through weeks of suffering. I don’t want to go through that or have someone have to watch me suffer.”