Weighing Risks of a Major Surgery

— 7 Questions Older Americans Should Ask Their Surgeon

BY Judith Graham

Larry McMahon, who turns 80 this month, is weighing whether to undergo a major surgery. Over the past five years, his back pain has intensified. Physical therapy, muscle relaxants, and injections aren’t offering relief.

“It’s a pain that leaves me hardly able to do anything,” he said.

Should McMahon, a retired Virginia state trooper who now lives in Southport, North Carolina, try spinal fusion surgery, a procedure that can take up to six hours? (Eight years ago, he had a lumbar laminectomy, another arduous back surgery.)

“Will I recover in six months — or in a couple of years? Is it safe for a man of my age with various health issues to be put to sleep for a long period of time?” McMahon asked, relaying some of his concerns to me in a phone conversation.

Older adults contemplating major surgery often aren’t sure whether to proceed. In many cases, surgery can be lifesaving or improve a senior’s quality of life. But advanced age puts people at greater risk of unwanted outcomes, including difficulty with daily activities, extended hospitalizations, problems moving around, and the loss of independence.

I wrote in November about a new study that shed light on some risks seniors face when having invasive procedures. But readers wanted to know more. How does one determine if potential benefits from major surgery are worth the risks? And what questions should older adults ask as they try to figure this out? I asked several experts for their recommendations. Here’s some of what they suggested.

What’s the goal of this surgery? Ask your surgeon, “How is this surgery going to make things better for me?” said Margaret “Gretchen” Schwarze, an associate professor of surgery at the University of Wisconsin School of Medicine and Public Health. Will it extend your life by removing a fast-growing tumor? Will your quality of life improve by making it easier to walk? Will it prevent you from becoming disabled, akin to a hip replacement?

If your surgeon says, “We need to remove this growth or clear this blockage,” ask what impact that will have on your daily life. Just because an abnormality such as a hernia has been found doesn’t mean it has to be addressed, especially if you don’t have bothersome symptoms and the procedure comes with complications, said Drs. Robert Becher and Thomas Gill of Yale University, authors of that recent paper on major surgery in older adults.

If things go well, what can I expect? Schwarze, a vascular surgeon, often cares for patients with abdominal aortic aneurysms, an enlargement in a major blood vessel that can be life-threatening if it bursts.

Here’s how she describes a “best case” surgical scenario for that condition: “Surgery will be about four to five hours. When it’s over, you’ll be in the ICU with a breathing tube overnight for a day or two. Then, you’ll be in the hospital for another week or so. Afterwards, you’ll probably have to go to rehab to get your strength back, but I think you can get back home in three to four weeks, and it’ll probably take you two to three months to feel like you did before surgery.”

Among other things people might ask their surgeon, according to a patient brochure Schwarze’s team has created: What will my daily life look like right after surgery? Three months later? One year later? Will I need help, and for how long? Will tubes or drains be inserted?

If things don’t go well, what can I expect? A “worst case” scenario might look like this, according to Schwarze: “You have surgery, and you go to the ICU, and you have serious complications. You have a heart attack. Three weeks after surgery, you’re still in the ICU with a breathing tube, and you’ve lost most of your strength, and there’s no chance of ever getting home again. Or, the surgery didn’t work, and still you’ve gone through all this.”

“People often think I’ll just die on the operating table if things go wrong,” said Dr. Emily Finlayson, director of the UCSF Center for Surgery in Older Adults in San Francisco. “But we’re very good at rescuing people, and we can keep you alive for a long time. The reality is, there can be a lot of pain and suffering and interventions like feeding tubes and ventilators if things don’t go the way we hope.”

Given my health, age, and functional status, what’s the most likely outcome? Once your surgeon has walked you through various scenarios, ask, “Do I really need to have this surgery, in your opinion?” and “What outcomes do you think are most likely for me?” Finlayson advised. Research suggests that older adults who are frail, have cognitive impairment, or other serious conditions such as heart disease have worse experiences with major surgery. Also, seniors in their 80s and 90s are at higher risk of things going wrong.

“It’s important to have family or friends in the room for these conversations with high-risk patients,” Finlayson said. Many seniors have some level of cognitive difficulties and may need assistance working through complex decisions.

What are the alternatives? Make sure your physician tells you what the nonsurgical options are, Finlayson said. Older men with prostate cancer, for instance, might want to consider “watchful waiting,” ongoing monitoring of their symptoms, rather than risk invasive surgery. Women in their 80s who develop a small breast cancer may opt to leave it alone if removing it poses a risk, given other health factors.

Because of Larry McMahon’s age and underlying medical issues (a 2021 knee replacement that hasn’t healed, arthritis, high blood pressure), his neurosurgeon suggested he explore other interventions, including more injections and physical therapy, before surgery. “He told me, ‘I make my money from surgery, but that’s a last resort,” McMahon said.

What can I do to prepare myself? “Preparing for surgery is really vital for older adults: If patients do a few things that doctors recommend — stop smoking, lose weight, walk more, eat better — they can decrease the likelihood of complications and the number of days spent in the hospital,” said Dr. Sandhya Lagoo-Deenadayalan, a leader in Duke University Medical Center’s Perioperative Optimization of Senior Health program.

When older patients are recommended to POSH, they receive a comprehensive evaluation of their medications, nutritional status, mobility, preexisting conditions, ability to perform daily activities, and support at home. They leave with a “to-do” list of recommended actions, usually starting several weeks before surgery.

If your hospital doesn’t have a program of this kind, ask your physician, “How can I get my body and mind ready” before having surgery, Finlayson said. Also ask: “How can I prepare my home in advance to anticipate what I’ll need during recovery?”

What will recovery look like? There are three levels to consider: What will recovery in the hospital entail? Will you be transferred to a facility for rehabilitation? And what will recovery be like at home?

Ask how long you’re likely to stay in the hospital. Will you have pain, or aftereffects from the anesthesia? Preserving cognition is a concern, and you might want to ask your anesthesiologist what you can do to maintain cognitive functioning following surgery. If you go to a rehab center, you’ll want to know what kind of therapy you’ll need and whether you can expect to return to your baseline level of functioning.

During the covid-19 pandemic, “a lot of older adults have opted to go home instead of to rehab, and it’s really important to make sure they have appropriate support,” said Dr. Rachelle Bernacki, director of care transformation and postoperative services at the Center for Geriatric Surgery at Brigham and Women’s Hospital in Boston.

For some older adults, a loss of independence after surgery may be permanent. Be sure to inquire what your options are should that occur.

Complete Article HERE!

Psychedelics for End-of-Life Patients

— What the Research Says

Psychedelics drugs may help dying patients face death. However, practitioners and researchers advise caution. End-of-life is a unique time with a distinct set of risks requiring specialized care. Using psychedelics for patients facing death has yet to be thoroughly tested.

By

  • Psychedelic drugs may help end-of-life patients by opening floodgates of new brain connections, reducing anxiety and feelings of isolation.
  • Research suggests side effects and risks of psychedelics for therapy are low in medically stable subjects.
  • End of life patients, however, face unique circumstance and are not medically stable.
  • Hope surrounds the promise of psychedelic-assisted therapy, but more research with terminally ill patients is needed.
  • In the meantime, there are other ways end-of-life patients can find connection, peace, and meaning.

Using psychedelic drugs (psilocybin, DMT/Ayahuasca, ketamine, MDMA, and LSD) for mental health treatment is a hot topic in current research.

America’s mental health crisis has not abetted, showing a need for innovative treatment. Evidence and confidence are growing around psychedelic use paired with talk therapy.

Mental anguish is common among people with terminal illnesses. As therapy with psychedelics continues to demonstrate emotional healing, more practitioners are eager to use the tool for end-of-life patients.

A powerful therapeutic tool

Psychedelic drugs, also known as magic mushrooms and hallucinogens, affect mood, energy levels, cognition, and perception. For many people, they stimulate profound spiritual experiences, dissolving the feeling of disconnection from self, the world, the universe, and a higher power.

People around the world have used psychedelics for centuries as a cultural and spiritual practice. Today psychedelics in both plant-based and synthetic forms are used recreationally and in scientific studies.

Many therapists, psychologists, and psychiatrists cite dramatic improvements in conditions like anxiety, depression, and post-traumatic stress disorder, lasting for weeks to months.

Science isn’t sure how psychedelics work, but they briefly quiet some parts of the brain and open others, causing a floodgate of new connections. This floodgate releases people from entrenched thought patterns and builds new neurological connections, something known as neuroplasticity.

As a result, many people change their minds and their lives.

These life-changing revelations can arise from disturbing psychedelic trips. Still, many who endure a gut-wrenching hallucinogenic journey say it was one of the top five most important events in their lives – worth the anguish for the rich healing.

Research suggests the best outcomes – long-lasting and life-changing – happen with intense therapy before and after taking a psychedelic drug.

Perhaps the most powerful outcome of using psychedelics for therapy is an increased sense of belonging. Connectedness is a deep, human need regardless of race, ethnicity, and culture. Feeling disconnected causes internal turmoil that can lead to chronic health problems.

Psychedelics for end-of-life care

In the last weeks and months of their lives, people face an intense rollercoaster of emotions, including fear, anxiety, and sadness.

Research has shown that psychedelic therapy can reduce death anxiety and increase a sense of connection and meaning for end-of-life (EOL) patients.

An academic book published in 2022 called Disruptive Psychopharmacology discusses the current science of psychedelic use for therapy and its safety and implementation. Psychiatrists and neuroscientists from John Hopkins and the University of California, San Francisco, collaborated on an end-of-life and palliative care chapter. They reviewed the research on psychedelics for patients facing the last stage of a terminal illness, often cancer.

As the authors noted, research with psychedelics for terminally ill patients started in the 1960s. Since then, research with dying patients continues to be promising – although narrow in scope – for improving depression, fear of death, discouragement, and connectedness.

Relief from fear and isolation are two serious emotional challenges for EOL patients. They seek peace and connection to their loved ones. Psychedelics coupled with therapy could achieve more comfort.

The risks of psychedelics for EOL

However, the psychology community advises caution in using psychedelics for end-of-life patients.

According to Dr. David B. Yaden and his team of researchers who wrote the EOL chapter in Disruptive Psychopharmacology, most researchers have studied psychedelic use with medically stable patients, even if they have a mental illness.

EOL patients are not medically stable and can be highly stressed. Psychedelics may worsen symptoms like insomnia, confusion, delirium, shortness of breath, and diarrhea.

They could also cause patients to question long-held spiritual beliefs, possibly adding more stress to the patient and loved ones.

The authors also said we know too little about whether psychedelics interact safely with medications commonly given to EOL patients.

Furthermore, there are no dosing and treatment protocols, certification processes, or professional organizations to oversee the safe use of psychedelic therapy.

Even worse, there are too many reports of sexual abuse by psychedelic-assisted therapists. Thorough training and vetting of therapists are needed because assisting psychedelic trips is very specialized and challenging for therapists.

In a 2022 Medium article, Dr. Rosalind Watts, a leading researcher on the therapeutic use of psychedelics, wrote that real healing is possible when psychedelics are “interwoven into very intentional therapy…The drug was a catalyst to the therapeutic process, not the therapeutic process itself.” She worries we focus on the drug and not the expertise of therapists.

Palliative care specialists say there are many natural wonders – spiritual and physical – in the dying process. They worry that psychedelics may negatively interrupt a naturally beautiful process that, by itself, can create positive transformation.

Obtaining psychedelics for EOL therapy

Psychedelics are only legally available for research studies, but in the coming years, that will change.

Oregon and Colorado legalized psychedelics for therapeutic use in the United States, while several other states have decriminalized them. Once a drug is legalized or authorized by the FDA, however, implementing their use can still take a few – sometimes several – years.

Other ways to open your mind

Music triggers the brain’s pleasure center and a broad, highly diverse network of brain neurons.

Studies suggest spirituality – like psychedelics – hushes the self-focused parts of the brain. This effect happens in the deepest states of prayer and worship, causing “me” to meld seamlessly into connectedness with others, the universe, and a higher power.

Various forms of meditation also open neurological pathways in transforming ways.

Many studies show that healthy relationships and participation in a diverse community reduce stress and improve a sense of belonging.

If you or a loved one face the end of life, it’s essential to talk with a spiritual advisor or a palliative care specialist who can help you find what works for you to feel connected and unafraid.

Complete Article HERE!

Queering the Good Death

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

By Sara Harrison

Before he met Charles Koehler—and before he married a woman, got divorced, and came out—Dennis Hostetler was a college student who needed money. In the summer of 1962 he began working in the W.R. Grace mine, cleaning the tools used to drag vermiculite ore out of the ground. The shiny, flaky mineral would be refined at the plant, and when heated, it would balloon into puffs that could insulate buildings. Libby, a town in northwest Montana, was a beautiful place, but Hostetler had bigger ambitions, so he took the $1,443.72 he’d made and got the hell out.

But pieces of Libby stayed with Hostetler, buried deep in the outer lining of his lungs. He unwittingly carried toxic mineral fibers from the mine to college in Missoula, to the Peace Corps in Tunisia, to Paris’ Left Bank, and to St. Louis, where one day, at age 67, he discovered he was dying. After experiencing fatigue, chest pain, and shortness of breath, Hostetler was diagnosed with mesothelioma, a deadly cancer probably caused by inhaling asbestos that tainted the vermiculite he mined. In 2009, a year after Hostetler’s diagnosis, the Environmental Protection Agency declared a public health emergency in Libby and initiated a massive cleanup effort that’s still ongoing. Hostetler had no illusions about what came next—he needed to put his affairs in order.

Death is an inevitable fact of life that most people prefer not to discuss. According to a 2012 survey by the California Health Care Foundation, 60% of Californians said that when they die, it’s very important to them not to burden their families with tough decisions. Despite that, more than half of the respondents hadn’t communicated their end-of-life plans with the people they wanted making decisions for them. Some were too busy with other things to think about it; others said thinking about dying made them uncomfortable. But having those conversations can make the experience better for the person dying. There’s less regret about what might have gone unsaid, and less anxiety and confusion for caregivers because they know their loved one’s wishes. Numerous studies have linked conversations about death to better, more peaceful deaths. 

For members of the LGBTQ community, dying without the legal protections of a living will or power of attorney could mean spending their final days without the support of the people who love them. A 2010 study by the National Gay and Lesbian Task Force Policy Institute found that LGBTQ elders are twice as likely to live alone and four times less likely to have children than their straight counterparts. That means their caregivers are often friends, exes, or chosen family who aren’t always recognized by the medical and legal systems. “There’s no automatic protection in place to make sure that someone can choose the person that’s going to be making their [end-of-life] decisions,” says Kimberly Acquaviva, a professor of nursing at the University of Virginia who specializes in palliative and end-of-life care. “You have to put those things in writing.” Before same-sex marriage was legal, there were horror stories about families swooping in and making medical decisions that didn’t accord with people’s wishes. “Those things still happen,” she says.

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

A Better Way to Die

Hostetler met his partner, Charles Koehler, in 1984. While the two could never have prepared for how their relationship unfolded over the next two decades, they always had a plan for death. Before Koehler met Hostetler, he’d read the 1969 bestselling book Everything You Always Wanted to Know About Sex* (*But Were Afraid to Ask) and decided it would be better if he wasn’t gay. The book told him gay people led awful lives, an idea affirmed in an abnormal psychology class where he learned that homosexuality was in the Diagnostic and Statistical Manual of Mental Disorders. 

If homosexuality was classified as a mental illness, then Koehler reasoned that it too must be a diagnosable disorder. But then Koehler actually met some gay men and realized their lives were just as varied as anyone else’s. Even then, it took years for Koehler to accept himself; when he did come out at age 27, he thought his life would remain solitary. “I had no idea what was possible,” he says. “I assumed that I would be basically closeted.” Both Koehler and Hostetler were hesitant when they met. Hostetler, who was older by a decade, had two daughters he still wasn’t out to. When Koehler moved in, Hostetler told the girls he was just renting a room. But in time they came out to Hostetler’s daughters and ex-wife. 

When two of their lesbian friends asked them if they’d consider donating sperm so they could have children, both men obliged. At first the men agreed to just be “uncles” to the children, but eventually the moms wanted the boys to know who their fathers were. “We had to do DNA testing to find out who was whose,” says Koehler. “The boys were really excited for about five minutes and then they wanted to go outside and play games.” Koehler began volunteering in a program that provided support buddies to men living with HIV and AIDS. He watched a man die and then watched the man’s partner get thrown out of the home they shared. Though the house was owned by the man who died, there was no will to ensure his partner could keep it. “The family came in, took everything, kicked the kid out on the street,” Koehler says. 

Afterward, Koehler and Hostetler—who were both healthy at the time—drew up documents specifying what should happen to their assets in case of death. Now, there are academics and organizations helping LGBTQ people make clear, concrete plans for death. In doing so, they’re modeling a better way to prepare for, think about, and embrace death. Sherrill Wayland, who directs operations at the National Resource Center on LGBTQ+ Aging, saw many of their older friends struggle to get the care and support they needed at the end of their lives. “It was really personal for me,” they say. “No one should die alone if they want support.” In their role, Wayland has helped create a series of guides to help LGBTQ people plan for serious illness and caregiving. 

Sage USA, an advocacy organization for LGBTQ elders, is also pushing for cultural competency training in long-term care facilities. Compassion & Choices, a group that champions the importance of end-of-life planning, has LGBTQ-focused programs like Pride in a Box, which encourages people to take time during Pride Month to talk about how they want to die. These conversations can seem at once ghoulish and mundane: Do you want to be cremated or buried? Do you desire an open- or closed-casket funeral? What clothes would you like to be buried in? What pronouns should appear in your obituary? “LGBTQ people have realized that if we don’t make a plan, things are probably going to go sideways because other people won’t be looking out for us,” says Acquaviva, who helped develop an LGBTQ-inclusive curriculum for The Conversation Project, an organization that helps people discuss their end-of-life plans. “We have to figure out ways to look out for ourselves.”

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

Because Hostetler had an amalgamation of chosen and genetic family members, he wanted to make sure everyone was on the same page. He organized his will and called his daughters, his ex-wife, the sons, and their mothers. Hostetler was adamant that he wanted to die at home, so he arranged for hospice care. Instead of hiding his identity, Hostetler informed his health care providers that he was gay and that Koehler was his life partner and caregiver. Koehler says that without exception, every single person was supportive and respectful of their relationship.

In the final two weeks of Hostetler’s life, a hospice nurse suggested setting up his bed in the living room so he wouldn’t be alone. His eldest daughter and her family moved in and traded shifts with Koehler and a hospice nurse. His nurses provided massage and music therapy to make him more comfortable. Hostetler was sedated, hovering at the edge of their everyday routines. Finally, on New Year’s Eve 2010, his daughters and his life partner surrounded his bed and held hands as he took his last breaths. Koehler checked his pulse and said, “I think he’s gone.” Koehler describes the whole experience as peaceful. Having months to accept that Hostetler would die helped make the process less traumatizing for everyone.

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

“In a strange way it was both sad and yet somehow comforting at the same time knowing that he died being surrounded by us at his home, just as he wished,” Koehler says. But not all LGBTQ patients receive such affirming care: A 2020 survey published in the Journal of Palliative Medicine found that nearly one-quarter of health care providers witnessed discrimination against LGBTQ patients in palliative care settings and nearly 30% of the respondents reported witnessing discrimination against LGBTQ spouses, partners, or people whom the patient had legally designated to make care decisions for them.

Preparing for the Inevitable End

Experts like Acquaviva and Wayland say that health providers need to take time to understand the barriers that create health inequities in the LGBTQ community and undergo cultural competency training to avoid making the same mistakes. Because LGBTQ families are more likely to be families of choice, providers need to be sensitive to those dynamics and spend time learning who is part of a patient’s support system instead of automatically deferring to genetic family members. There are also simple ways to acknowledge the range of human gender and sexual identities, such as including nongendered pronouns on forms, asking for patients’ pronouns and using them correctly, and including LGBTQ-affirming language in nondiscrimination clauses.

Those steps may seem like small gestures, but they’re important signals. If an organization doesn’t commit to doing something as minimal as adding inclusive language to a statement, says Acquaviva, then it’s reasonable to expect that they won’t treat a patient with the dignity they deserve. Acquaviva has both written about and experienced this discrimination: She and her wife talked extensively about their plans when her wife was diagnosed with ovarian cancer in 2019 and ultimately decided to use hospice care to help her die comfortably. But then they discovered that none of the hospice services near their Virginia home included LGBTQ-affirming language in their nondiscrimination statements. Despite the fact that both women were experts in end-of-life care, they faced death without the support of hospice because they felt they wouldn’t receive respectful care. Acquaviva was the one managing her wife’s pain meds, bathing her, and making sure she didn’t get bed sores.

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

There’s no single definition of a good death. Not everyone knows when their death is coming and not every death can follow a specific plan, but every death can be expected and discussed ahead of time. “We all want to imagine we’re gonna live a really long time, and it’s human nature to imagine that everything’s gonna be OK, but the reality is 100% of us are going to die,” Acquaviva says. Have the conversation—even if it’s awkward, uncomfortable, and hard. 

Now, more than a decade later, Koehler remains an active retiree. He’s single but he isn’t alone. He’s the vice president of PrimeTimers Worldwide, a large social group for older gay, bisexual, and transgender men. On Sundays he catches up with Hostetler’s daughters and their mom over Zoom, and when the younger daughter needed surgery, he helped with child care. “Having grandkids is something that I never dreamed of as even a remote possibility,” he says. “It never even crossed my mind at all.” His documents are in order and he encourages his peers to make end-of-life plans. But while he’s still here, he’s keeping busy, tending to the life and family he and Hostetler built together.

Complete Article HERE!

When the patient is family

— Perspectives on caring for loved ones during end-of-life

By Lora Parisien

Every day, hospice workers bring comfort to dying patients so that they may die with dignity and on their own terms. They extend grace and compassion to all, regardless of who they are or where they come from. This is the humble work of a Hospice of Michigan employee. This is the promise they keep: Every Person. Every Time.

But what happens when the hospice worker’s patient is a family member? Does having a hospice background make it easier to navigate the challenges of caring for a terminally ill patient when that patient is a loved one?

When she was just 10 years old, curiosity drew Sarah Beegen to the room in her family’s home where hospice staff were attending to her dying grandmother. “I wanted to know. I needed to know what was going on in there,” said Beegen. This same inquisitiveness led her to a career with Hospice of Michigan, where for the past 17 years, she worked her way from certified nurse assistant to her current role as manager of the not-for-profit’s referral center.

If anyone was fully prepared to care for a dying family member or insulated from the hardest aspects of death, certainly Beegen was. When her mother’s cancer became incurable, she “shut off my ‘hospice eyes’ and focused on other things. I didn’t want to see that mom was dying.”

The truth is, no amount of training or experience can prepare one for the death of a loved one — because dying is more than a medical event, it’s a deeply personal experience.

Hospice workers understand that both patients and their family members can struggle accepting life-limiting diagnoses. In 1969, Elizabeth Kubler Ross, a Swiss-American psychiatrist and pioneer in the worldwide hospice movement, identified five stages of grief. When faced with imminent death, denial, the first of the five stages, is a common reaction to change and loss. No amount of hospice training can derail feelings of grief. Denial is the defense against something that is impossible to accept.

“No matter how seasoned you are, you can never be prepared when the patient is your loved one,” says Beegen.

Tracey Pierce, director of marketing and communications for Hospice of Michigan, also found herself in unexpected territory when she reached out to her colleagues for help. In a matter of months, her mother- and father-in-law suffered falls, hospitalizations, and anxiety which led to a drastic decline in their health.

“It’s a different ballgame when you are on the other side. For as much as I thought I knew about hospice care, I realized how much I didn’t know. I’m grateful we had my work family to lean on. Hearing the stress in my voice, they calmly answered our questions and addressed our concerns with compassion and patience,” said Pierce.

That is the gift of hospice, a team of experts sweeps in and surrounds patients and families — and sometimes colleagues — with knowledge, skill, and compassion, providing wide-ranging physical, emotional, and spiritual support at a crucial time.

Beegen and Pierce both knew they needed help from the experts, the people she worked with every day. “If I learned one thing from my mother’s death, it’s not to be afraid to ask for help,” said Beegen.

“We always talk about providing care and dignity in hospice. It was evident in simple, nurturing acts, such as a hospice aide bathing my mother-in-law,” shares Pierce. That gave Pierce and her family the opportunity to focus on being present in all the precious moments they had left.

Redefining what was and shifting to what is now. Searching for meaning. Contending with change. Living day by day. Preparing for death. These are the hallmarks of coping with the terminal illness of a loved one. It is a highly personal experience, no matter who you are. Though it can be daunting, no one should face the end-of-life process alone.

Complete Article HERE!

A researcher’s quest to make end-of-life care more equitable for Black Americans

Black Americans are at greater risk for serious illnesses like dementia and kidney failure, but they’re less likely to receive the kinds of care that can make living and dying with these diseases less painful.

By Leslie Walker, Dan Gorenstein

The four months of care Annie Mae Bullock received for her stage 4 lung cancer were rocky at best. But the final three days of that care, her daughter Karen Bullock said, were excellent.

Annie Mae spent those few days in hospice care at home surrounded by loved ones singing, chanting and praying as she passed.

“We did all of the things we knew she would have wanted us to do,” Karen Bullock said. “And we didn’t have to worry about whether we were being judged.”

That was one of the few times during those hard four months that Bullock and her family hadn’t felt judged. They felt judged when Annie Mae initially declined chemotherapy and later on, when she asked why she needed a legal document outlining her end-of-life wishes.

Bullock is grateful that her mother had those days at home in hospice. She knows many Black families don’t get them.

Research shows that, for seriously ill patients, high-quality supports like advance care planning, hospice and palliative care can alleviate suffering for them – and their families. Benefits include reduced pain and emotional distress, and fewer unwanted interventions.

But Black patients, who are at greater risk for many serious illnesses, are less likely to receive these supports than White patients. For example, just 35 percent of Black seniors eligible for hospice care through Medicare actually receive it, compared to 50 percent of White Medicare beneficiaries.

A lonely road

This is a world Bullock has personal and professional experience navigating. She is a licensed clinical social worker and professor at the Boston College School of Social Work. And for the last two decades, Bullock has been studying why seriously ill Black patients – with incurable conditions like cancer or kidney failure – are less likely to get palliative care, and what it would take to change that.

“In retrospect, seeing that my mother could actually die well is what set me on this journey,” Bullock said.

She has struggled to find funding for her work, told repeatedly to focus on other topics or use data sets that already exist.

“But the large data sets don’t answer the questions that have not yet been asked,” Bullock said.

Through two decades of persistence amassing small studies and focus groups, and the work of others, Bullock has identified some of the barriers. The two biggest, she said, are the failure of the U.S. health care system to build trust with Black families and a lack of culturally competent care.

A system that can’t be trusted in life or in death 

America’s legacy of racism runs deep throughout its health care system, shaping the care Black patients receive and the medical decisions they make – including at the end of life, according to Bullock.

She recalled conversations with Black seniors who remember when their local hospital was segregated or when their communities were targeted with toxic waste sites.

“It’s difficult to convince someone that there is a team of people who want you to die well, when nobody cared if you lived well,” Bullock said.

Racial bias still exists in health care today. Nearly 1 in 3 Black adults in a recent survey said they had been treated poorly by a health care provider because of their race or ethnicity. More than 20 studies document that seriously ill Black patients are less likely to have their pain properly treated, diagnosed or managed.

Bullock said it is a rational decision for people to reject services from a system that has not proven trustworthy.

A culturally incongruent model of care

Bullock has focused a lot of her work on hospice – the kind of end-of-life care that benefitted her own mom. It often happens at home and is free of aggressive intervention.

But after studying the care experiences of more than 1,000 older Black adults and caregivers, Bullock came to the conclusion that certain aspects of the hospice care philosophy, which originated in Europe, are what she calls culturally incongruent.

“This is a European model of care that many White people find to be extremely helpful in dying a good death and having their needs met until the end,” Bullock said.

But she points to the spiritual care component of hospice as one common source of incompatibility. Surveys show spirituality plays a much larger role in the lives of Black families, but White hospice workers may not be familiar with those religious traditions and beliefs.

The least ideal time to explain your cultural preferences, said Bullock, is when you are sick or dying.

“When a patient and or family member has to educate you about their culture while they are receiving care, the message you’re sending is, ‘I don’t know anything about you. I haven’t learned to take care of you,’” she said.

A path toward more equitable care for the seriously ill

For years, experts have been calling for greater equity in care for the seriously ill and dying, but the COVID-19 pandemic has brought renewed attention to the issue.

Some experts, including Bullock, are prioritizing collecting better data and diversifying the medical workforce. Others are focused on expanding access to palliative care, which offers much of the same physical, emotional and spiritual support as hospice without requiring patients to cease aggressive interventions. Research shows Black patients tend to prefer having more intensive treatment options available even at the end of life.

Additional attempts to reduce racial disparities include programs that engage Black churches to reach more patients and those that offer more culturally tailored palliative care. More research is needed to evaluate the effectiveness and scalability of these and other interventions.

Bullock acknowledged working on health care equity can sometimes feel like shouting into a void. On especially hard days she returns to the memory of her mother’s final moments.

As Annie Mae appeared to lose consciousness, Bullock’s family wondered if they should continue their praying and singing and chanting.

It was the hospice social worker who explained the hospice philosophy that hearing is the last sense to go, and gave them a piece of advice Bullock will never forget.

“Continue to say the things you want to say,” the worker urged the Bullock family. “She can hear you even if she can’t respond.”

Complete Article HERE!

The anxieties of growing old when you’re LGBTQ

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

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

By Steven Petrow

Who would bring you chicken soup if you were sick? For most people of a certain age, that’s easy — a spouse or an adult child would step up.

For many LGBTQ people, however, it’s not a simple question at all.

“Many [would] have to think really hard about this,” said Imani Woody, an academic and community advocate who retired from AARP to start an organization serving LGBTQ seniors. She said chicken soup is a stand-in for having a social support system, which many of us need.

“Build your village right now,” Woody said.

A few years ago, I would have said that my then-husband would be my primary caregiver if I became ill or disabled. I’d have done the same for him. Now I’m 65 and divorced, and this issue — who can I call on? — is top of mind for me.

It’s also a serious concern for many LGBTQ people I know, whether single or partnered. Take one friend of mine, for example, who is 60 and a single gay man. He took care of his dying father last year (as I’d done four years earlier with my parents). During his dad’s lengthy illness, we talked about two questions that terrify us (and I don’t use that word lightly): “Who will take care of us when we need help?” “Where will we go when we can no longer take care of ourselves?”

Of course, aging is an equal opportunity challenge for straight and queer people alike. But in interviews with more than four dozen LGBTQ people, singled and partnered, I heard repeatedly about the anxieties faced by queer elders.

SAGE/Advocacy & Services for LGBT Elders, the National Resource Center on LGBTQ+ Aging, and Healthypeople.gov document the health challenges LGBTQ people face. We’re twice as likely as our straight counterparts to be single and live alone, which means more likely to be isolated and lonely. We’re four times less likely to have children. We’re more likely to face poverty and homelessness, and to have poor physical and mental health. Many of us report delaying or avoiding necessary medical care because we face discrimination or mistreatment by health-care providers. If you’re queer and trans or a person of color, these disparities are heightened further. (There are about 3 million LGBTQ people 50 and older.)

“It’s a very serious challenge for many LGBTQ older people,” said Michael Adams, chief executive of SAGE. “The harsh reality is that there just aren’t as many opportunities for older LGBTQ folks when it comes to creating, building and maintaining social connections. … We’re lacking the personal connections that often come with traditional family structures.”

In part, that’s because LGBTQ people have often found themselves rejected by family, friends and community in their younger years because of their sexual orientation or gender identity. To boot, we could not legally marry until 2015, when the Supreme Court ruled in favor of marriage equality. But even married queer folks can end up alone after a divorce or death, which often brings different challenges than those faced by straight people facing the same life-changing events.

An 80-year-old lesbian put it to me this way: For straight people, “If you were to go into a nursing home, you would not have to worry that people taking care of you did not approve of your orientation, or that the facility would not take you because they were a ‘religious’ community. These are real issues for the queer community.”

Another friend tells me he has no plans for the future except a guest room and a second bathroom. And another said he hopes by the time he needs care, there will be an LGBTQ senior community in his city. “Otherwise, I have nothing,” he said.

A former colleague of mine, a lesbian, told me she worries about the cost of senior living: “I dread it all. I won’t have any dough then, so it’s really up to fate.”

Senior living communities, which provide support for the aging, can be less than welcoming to those who are LGBTQ. Staff, some of whom have traditional views on sexuality, gender identity and marriage, also pose challenges to LGBTQ elders since many facilities lack the training and policies to discourage discrimination, which can lead to harassment, Adams said.

Patrick Mizelle, who lived in Georgia with his husband, told Kaiser Health News several years ago that he worried about how “churchy” or faith-based their local options seemed, and feared they would not be accepted as a couple. “Have I come this far only to go back in the closet and pretend we are brothers?” he asked.

Rather than take that risk, they moved across the country to a queer-friendly senior living complex in Portland, Ore. They are among the lucky ones in that they could afford both the move and the cost of this domestic situation.

How do you find a welcoming LGBTQ senior living arrangement? SAGE publishes a comprehensive list of long-term care facilities (organized by state and city, along with level of care) that it has found to be welcoming.

“We also have resources about the kinds of questions that a consumer can ask to figure out if a provider is paying attention to the steps that need to be taken to become more welcoming to LGBTQ older adults,” Adams said.

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

What else can LGBTQ people do to find connection, to find a tribe? Many suggest the importance of developing intergenerational friendships early on in life, even as early as your 30s and 40s. Elders can impart wisdom and experience to younger LGBTQ people, who can provide help in return; as decades pass, the young ones become the elders.

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

The Harvard Study of Adult Development, which began tracking more than 238 men (regardless of sexual orientation) in 1938 and continues to this day, has reported consistently that relationships are the critical ingredient in well-being, particularly as we age.

Put simply, the more connected we are, the more likely we are to be healthy and happy. To paraphrase Imani Woody: Start building those bridges.

Complete Article HERE!

I have a terminal illness and I’m fighting my health-insurance company to let me die on my own terms

Shava Nerad told Insider that her son, Joseph, would look after her dog, Wilson, after she took her own life.

By

  • Shava Nerad has a terminal illness and intends to end her life by refusing food and water.
  • Her health-insurance company has denied the services she needs to carry out her plans.
  • This is Nerad’s story, as told to Jane Ridley.

This as-told-to essay is based on a conversation with Shava Nerad. It has been edited for length and clarity

I once talked a good friend out of suicide.

We were both in our 20s and I asked, “If you could do anything in your life, what would you do?” He said he’d be a roadie and learn to do the lighting for bands. So I told him, “Quit your job, get rid of everything, and go try that.” Then I said, “You can always kill yourself later.”

He took my advice. He became a lighting director for some of the biggest musicians of the 1980s and ’90s.

Now, four decades after that conversation, and at 63, I’m the one who wants to end my life. I’m not pro-suicide, but I am against the idea of a meaningless life — something that I see in my future. If I was handed millions of dollars, it wouldn’t give me back my health. If you can’t do what you love and you are suffering pain all day and every day, maybe it’s time to go.

I need clearance from my health-insurance company before I can properly end my life

But it’s not as simple as that. I am not going to hang myself — it sounds awful. All I want is to go out on my own terms while I can still say goodbye. The best way for me to die is by voluntarily stopping eating and drinking, or VSED.

I believe it’s the most compassionate method of suicide — both for yourself and your family. It’s not painful — you’re hardly even aware toward the end  — and your loved ones can be at your bedside if they wish. But before I go ahead with VSED, I have to rip up the red tape and change my advance directive. My health insurance won’t pay for the geriatric psych evaluation that I need to prove that I’m of “sound mind.”  If I don’t get the clearance, I can forget about receiving any form of hospice care.

inflammation and narrowing of the blood vessels. My rheumatologist — who told me that it was a progressive illness that could cause organ damage — said that it was potentially fatal. She said that Behcet’s made a stroke worse.

I had raging headaches and excruciating pain in my joints. It felt like the inside of my body was covered with hives. I was forced to leave my job as the director of a nonprofit software project. I used a walker because of my mobility impairments.

I think that my pain threshold is impacted by barometric pressure. I felt the best I had for years on a trip to South Africa in 2019. My symptoms seemed to ease in warm, dry weather. I moved from Boston to Fremont, California, the same year. The change of location helped — for a while. But if a doctor asked how I was feeling today, I’d say, “really, really, really terrible.”

Behcet’s tends to exacerbate any old or new injury. Right now, the inflammation is in my left hip. I’ll feel it in my shoulder, back, internal organs, and even my feet. I’m taking medication for diabetes and thyroid issues. I’ve tried vitamin D and herbal supplements.  Nothing’s done a really great job. CBD eases the pain — or allows me to better ignore the pain.

I got COVID in January this year. I had even more pain and fatigue. A lasting effect was double vision, so I can no longer drive. The eye strain has restricted my reading and writing. I’m a retired journalist, so that’s particularly distressing. I sleep 18 hours a day. I only leave my house for medical appointments. 

I don’t want to die a long, torturous death like my mother did

I decided to end my life last month. My 29-year-old son, Joseph, supports me. He knows I’ve been ill for 15 years, and I’m in decline. I knew that I was not eligible for any of the Death with Dignity laws. It was highly unlikely that a doctor would say I’ve got six months to live. Behcet’s is a slow, progressive disease. It could kill me by January next year — or when I’m in my 90s.

My mother died a prolonged and torturous death from Lewy body dementia — the same thing Robin Williams had — at the age of 94.  She got squeamish thinking about death. 

The only legal option I have available is VSED. The Supreme Court ruled that any person has the right to refuse treatment, including refusing hydration and nutrition. At the point that I stop eating and drinking, I can’t get medication to help me die, only medication to make me less distressed.

advocacy groups for VSED. They’ve told me to change my advance directive once I’ve been certified as being “in sound mind” — with no depression or dementia — by an experienced geriatric psychiatrist.

I don’t need the certification to move forward with VSED, but it’s an important measure. The advocates said that my decision would be much less likely to be contested if I got the legal documentation. The wishes of some VSED patients, they said, had not been honored.

But Kaiser Permanente, my HMO, has refused to pay for the psych evaluation. I said that I needed the referral to pursue VSED and receive hospice care. They have not been transparent about their denial. 

If I have to pay out of pocket, it will cost tens of thousands of dollars that I don’t have. I’m a senior on a fixed income. 

I feel that it’s time for me to go

It takes a great deal of strength to talk about options like VSED. We’re running into a lot of social taboos. It’s a product of how incredibly good modern medicine is — it’s hard for people to die. We’re so focused on prolonging life, we don’t talk about the quality of life.

I’d rather die at home with hospice care rather than in an institution. People I haven’t seen in years have come to visit. They’re happy to have the opportunity to say goodbye, which is how it should be. I have a dark sense of humor and say that we should light a few candles on my “unbirthday cake.”

I’ve led a good life and packed in a lot. I look back at Joseph’s birth and the first few hours that I held him. When I was to marry his dad, I made my own wedding gown. I loved dancing and climbing the mountains where I grew up in Vermont.

I want my death to be as gentle as possible, for everyone involved. I want to be as brave and determined and loving in death as I have been in life.

Complete Article HERE!