It was September 2023, and Rigsby, 46, had been brought to Jackson Hospital from an Alabama state prison 10 days earlier after complaining of pain and swelling in his abdomen. Doctors found that untreated hepatitis C had caused irreversible damage to Rigsby’s liver, according to his medical records.

Rigsby decided to stop efforts to treat his illness and to decline lifesaving care, a decision he made with his parents. And Rigsby’s mother, Pamela Moser, tried to get her son released to hospice care through Alabama’s medical furlough policy, so that their family could manage his end-of-life care as they saw fit.

But there wasn’t enough time for the furlough request to be considered.

After learning that Rigsby was on palliative care, the staff at YesCare, a private prison health company that has a $1 billion contract with the Alabama Department of Corrections, told the hospital it would stop paying for his stay and then transferred him back to Staton Correctional Facility in Elmore, according to the hospital record his mom provided to Ñî¹óåú´«Ã½Ò•îl Health News.

Moser never saw or spoke to her son again.

“The last day I went to see him in the hospital, I was hoping he would take his last breath,” said Moser, a former hospice nurse. “That is how bad I didn’t want him to go to the infirmary” at the prison.

A week later, Rigsby died of liver failure in the infirmary, according to his autopsy report.

Officials at the corrections department and YesCare did not respond to requests for comment.

As the country’s , thousands die behind bars each year. For some researchers, medical providers, and families of terminally ill people in custody, Rigsby’s situation — and Moser’s frustration — are familiar: Incarcerated people typically have little say over the care they receive at the end of their lives.

That’s despite a broad consensus among standards boards, policymakers, and health care providers that terminally ill people in custody should receive treatment that minimizes suffering and allows them to be actively involved in care planning.

But such guidelines aren’t binding. State policies on end-of-life care vary widely, and they generally give much leeway to correctional officers, according to a . The result is that correctional officers and medical contractors make the decisions, and they focus more on security concerns than easing the emotional, spiritual, and physical pain of the dying, say researchers and families.

People in jails and prisons often die while shackled to beds, separated from loved ones, and with minimal pain medication, said Nicole Mushero, a geriatrician at Boston University’s Chobanian & Avedisian School of Medicine who studies and works with incarcerated patients.

“When you’re coming at this from a health care perspective, it’s kind of shocking,” Mushero said.

Security vs. Autonomy

Patients are often suspended or dropped from their health coverage, including commercial insurance or Medicaid, when incarcerated. Jails and prisons have their own systems for providing health care, often funded by state and local budgets, and therefore aren’t subject to the same oversight as other public or private systems.

The , which accredits programs at correctional facilities across the country, says terminally ill people in custody should be allowed to make decisions about treatment options, such as whether to accept life-sustaining care, and appoint a person who can make medical decisions for them.

Jails and prisons should also provide patients with pain medication that wouldn’t otherwise be available to them, allow extra visits with loved ones, and consider them for medical release programs that let them receive hospice care in their communities, said Amy Panagopoulos, vice president of accreditation at the commission. That approach is often at odds with security and safety rules of jails and prisons, so facility leaders may be heavily involved in care decisions, she said.

As a result, the commission plans to release updated standards this summer to provide more details on how facilities should handle end-of-life care to ensure incarcerated patients are more involved in the process.

State laws on medical decision-making, informed consent, and patient privacy apply even to incarcerated patients, said Gregory Dober, who teaches biomedical ethics and is a prison monitor with the Pennsylvania Prison Society, a nonprofit that supports incarcerated patients and their families.

But correctional officers and their medical contractors often prioritize security instead, Dober said.

The Federal Bureau of Prisons allows guards to override do-not-resuscitate orders if they interfere with the security and orderly operation of the institution, according to the .

“This is a wildly understudied area,” said Ben Parks, who teaches medical ethics at Mercy College of Ohio. “In the end, it’s all about the state control of a prisoner’s life.”

About a third of all people who died in federal custody between 2004 and 2022 had a do-not-resuscitate order, according to Bureau of Prisons data obtained by Ñî¹óåú´«Ã½Ò•îl Health News through a Freedom of Information Act request.

The prison bureau’s policy of forcing CPR on patients is cruel, Parks said. CPR can , with . That is why people sign do-not-resuscitate orders refusing the treatment, he said.

“This is the inversion of the death penalty,” Parks said. “Resuscitation against your will.”

Cut Off From Family

In addition, corrections officials decide whether and when to reach out to a patient’s friends or relatives, said Erin Kitt-Lewis, a Penn State College of Nursing associate research professor who has studied the care of older adults in prisons. As a result, terminally ill people in custody often can’t involve their families in end-of-life care decisions.

That was the case for Adam Spurgeon, who was incarcerated in a state prison in Tennessee, his mother said. One morning in November 2018, Kathy Spurgeon got a call from hospital officials in Nashville saying her son had only hours to live, she said.

About a month earlier, she had learned from her son that he had had heart surgery and developed an infection, she said. But she didn’t know much about his treatment.

Around noon, she arrived at the hospital, about a three-hour drive west of where she lives. Adam, 32, died that evening.

Dorinda Carter, communications director at the Tennessee Department of Correction, declined to comment on Spurgeon’s case. “It is our policy to not comment on an individual inmate’s medical care,” she said in an email.

Kathy Spurgeon said providers who treated Adam outside of prison were too deferential to guards.

And physicians who work with incarcerated patients say that can be the case: Even when terminally ill people in custody are treated at hospitals, correctional officers still end up dictating the terms of care.

Hospital staff members often don’t understand the rights of incarcerated patients and are unsure about state laws and hospital policies, said Pria Anand, a neurologist who has treated incarcerated patients in hospitals. “The biggest problem is uncertainty,” she said.

Correctional officers sometimes tell hospital staffers they can’t contact next of kin for security reasons, or they won’t tell a patient about discharge plans because of worries they might escape, Anand said.

And care frequently takes place within prisons, which often are not equipped to handle the complexities of hospice decision-making, including types of treatment, when to stop treatment, and who can make those decisions, said Laura Musselman, director of communications at the Humane Prison Hospice Project, which provides training and education to improve end-of-life care for incarcerated patients.

“Our prison system was not designed to provide care for anyone, especially not people who are chronically ill, terminally ill, older, actively dying,” said Musselman, who noted that her group’s training has 15 modules to cover all aspects of end-of-life care, including grief support, hands-on caregiving, and paperwork.

Rigsby struggled with mental health and addiction for most of his adult life, including a stint in prison for a drug-related robbery. A parole violation in 2018 landed him back in prison.

At Jackson Hospital, Rigsby was given hydromorphone, a powerful pain medication, as well as the anxiety drug lorazepam. Before he was transferred back to prison, a nurse with YesCare — one of the country’s biggest prison health care providers, which has been sued over substandard care —assured hospital staffers he would be provided with the same level of pain medication and oxygen he had received at the hospital, his medical records show.

But Moser said she doesn’t know whether he spent his last days in pain or peace. The state wouldn’t provide Moser with Rigsby’s medical records from the prison, she said. She said she wasn’t allowed to visit her son in the infirmary — and wasn’t told why.

Moser called the infirmary to comfort her son before his death, but staffers told her he couldn’t make it to the phone and they couldn’t take one to him, she said.

Instead, Moser said, she left messages for prison officials to tell her son she loved him.

“It breaks my heart that he could not talk with his mother during his last days,” said Moser, whose son died on Oct. 4, 2023.

Two weeks later, she drove to Woodstock, Alabama, to collect his remains from a crematorium.

Ñî¹óåú´«Ã½Ò•îl Health News data editor Holly K. Hacker contributed to this report.

Ñî¹óåú´«Ã½Ò•îl Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about .

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“It’s much lighter work. It’s nurturing. It’s slow,” said Streim, a licensed massage therapist.

Massage therapy for someone near the end of life looks and feels different from a spa treatment. Some people stay clothed or lie in bed. Others sit up in their wheelchairs. Streim avoids touching bedsores and fresh surgery wounds and describes her work as “meditating and moving at the same time.” She recalled massaging the shoulders, hands, and feet of one client as he sat in his favorite recliner and watched baseball on TV in the final weeks of his life.

“When you’re dying and somebody touches you without expectation of anything in return, you just get to be,” said Streim.

Massage therapists like Streim, who specializes in working with people who are dying or have an advanced form of cancer or other illness, are rare. Fewer than 1% of therapists specialize in hospice or palliative care massage, according to research by the , although many more may periodically offer massage for hospice patients.

Streim has a private practice in Lafayette, and her clients pay her out-of-pocket, as Medicare and private insurance typically don’t cover massage therapy. She also volunteers as a hospice massage therapist four hours a month.

It’s common for hospice organizations to use volunteer therapists for treatments, though some massage therapists, with physicians backing them, are pushing for paid positions as part of medical teams working alongside nurses and social workers. In the hospice unit at Palo Alto VA Medical Center, in Palo Alto, California, for example, massage therapists have been integral members of the multidisciplinary team for decades, said , a professor of medicine at Stanford University and the founding director of its palliative care education and training program.

The covid-19 pandemic made the recruitment of specialists for this intimate work, both paid and volunteer, more difficult, as the pool of massage therapists shrank amid school closures and exits from the profession. There are up to 10% fewer massage therapists today than before the pandemic, according to Les Sweeney, president of .

“It’s still hard for us to hire and recruit therapists,” said operations director at Healwell, a nonprofit that trains and employs massage therapists to work in hospitals in the Washington, D.C., area.

For three weeks in April 2020, licensed massage therapist , who works at Faith Presbyterian Hospice in Dallas, could not massage patients due to the state’s lockdown orders. Then, the state granted an allowance for massage therapists like her, working in medical settings under supervision, to resume giving massages. But it took several months for many therapists to return to work, and some didn’t return at all, Spence said.

“The pandemic was not kind to massage therapists,” Spence said. “And so we have lost a lot of people like me who are of an age and experience level that would really be called to and suitable” for oncology, hospice, and palliative massage.

“We need to get more therapists trained,” she said. She described receiving several calls each month from people who have found her name online. It has become harder since covid to find a therapist to refer them to, Spence said.

At TRU Community Care, which operates in several locations in Colorado, Volunteer Services Supervisor Wendy Webster said massages are a top request from patients and their families, but they’re limited in how many sessions they can offer, with only two volunteer massage therapists. (A third volunteer did not return after the pandemic.)

Finding new massage therapist volunteers is challenging, said Webster, in part because they can earn money in other settings and “they’re coming to us for free.” Thirty years ago, TRU Community Care’s nonprofit status was the norm, but now the majority of hospices are for-profit, with .

Despite that shift, hospices still rely heavily on volunteers. Medicare pays for at least six months of hospice for a patient on the condition that providers use volunteers for at least worked by paid staff and contractors. Sometimes, those volunteer hours are filled by massage therapists.

“All hospices, not-for-profit or for profit alike, should aim to include medically-trained massage therapists as part of best holistic care,” , a professor of medicine at Georgetown University who directs palliative care at MedStar Washington Hospital Center in Washington, D.C., wrote in an email. Employing these specialists is beneficial and does not diminish the important service of volunteers, particularly in end-of-life care, he added.

More studies on the impact of specialized massage could enact changes in the field, said , founder and executive director of Healwell, which, since 2009, has trained 500 therapists in hospital-based and oncology massage, as well as in how to work collaboratively with doctors and nurses.

In a of 387 patients in palliative care at MedStar, including some nearing the end of their lives, Groninger, Cates, Jordan, and other co-authors found that massage therapy improved quality of life.

Despite new research on the benefits of massage, Cates said, many hospices bring on volunteers who don’t have advanced training, because hospices may not know that specialized training — such as the kind Healwell offers — exists.

Streim, who paid for her own classes in oncology and lymphatic massage, said that investment in education qualified her for a six-year career as an oncology massage therapist at Good Samaritan Medical Center’s Center for Integrative Medicine in Lafayette and later her private practice. She teaches classes in adapting massage for the elderly and those with illnesses at Boulder Massage Therapy Institute. In her 39 years as a therapist, Streim has done it all: volunteer, staff, entrepreneur, teacher.

Like Streim, Spence has continually redefined her role. She began in private practice before becoming an employee of a large hospice agency in which she traveled across nine counties in Texas, giving thousands of massages to people dying in their homes, assisted living communities, and skilled nursing homes. Today, at Faith Presbyterian Hospice, she is one of three licensed massage therapists on staff and fully integrated as an employee of the organization, which has more than 100 patients.

“Those of us who do this work have made big investments in our profession and I’m glad to see that we can be paid for it,” she said.

Spence collects data on how patients rate their pain on a scale of 1 to 10 before and after a massage. Most fall asleep during the massage, which she takes as an indication their pain has lessened or they became more relaxed. Of those who stay awake, almost all say their pain subsided significantly or went away completely.

That kind of positive engagement with providers is more urgent than ever since the pandemic, Groninger said. Spence agreed: “The pandemic taught us all, in a very painful way, what it’s like to be deprived of human touch and human connections.”

Sometimes the nursing staff at Faith Presbyterian will roll a bed out onto the patio so a patient can hear the sounds of nature and the fountain gurgling during Spence’s massage. There is more teasing and laughter than she would have imagined. For patients unable to speak, Spence watches their reactions carefully: a deep exhalation or the face and body softening. Sometimes it’s tears running down their cheeks.

“It’s profound, helping someone find safe breaths along this very difficult dying journey,” she said.

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At 63, McGee undergoes dialysis sessions three times each week at a Northwest Kidney Centers site near her Burien, Washington, home to rid her blood of waste and water. She has endured the placement of more than a dozen ports, or access sites, in her arms and chest as sites became scarred and unusable. Late last month, doctors performed surgery to install yet another port near her left elbow, but no one is certain it will hold.

“Because of scar tissue, I was told this is my last viable access,” she said.

Without ongoing dialysis, McGee knows she could face death within days or weeks. But, unlike many of the U.S. patients who require dialysis, McGee said she’s had help making peace with the process.

“I know that things are coming,” she said. “I’m in awe of death, but I’m not afraid of it anymore.”

That’s largely attributed to a novel effort in Washington state that embeds palliative care within a kidney center whose clinics treat patients living with kidney disease; and then later pair dying patients with hospice care without forcing them to forgo the comfort that dialysis may still provide.

Traditional hospice services require kidney patients to abandon dialysis, a decision that hastens death, and almost inevitably comes with acute symptoms, including muscle spasms and nausea.

McGee is one of 400 patients enrolled since 2019 in a first-in-the-nation palliative care program housed at Northwest Kidney Centers, a Seattle-based operation with clinics throughout the region. The organization founded the first dialysis center in the U.S. — and the world — nearly 50 years ago.

Chronic kidney disease, or CKD, encompasses five stages, from mild damage in the organs’ functioning in stage 1 to complete kidney failure in stage 5. Most patients start preparing for dialysis — and kidney failure — in stage 4. Dialysis does not cure kidney failure. The only other option for treatment is an organ transplant.

Dialysis patients typically face distressing physical, emotional and spiritual symptoms throughout their treatment, ranging from pain, shortness of breath and intense itching to depression and panic. The symptoms can grow dire as years pass.

But only a fraction of those patients, , ever receive specialized palliative care that can effectively target those issues, said Dr. Daniel Lam, the University of Washington nephrologist and palliative care expert who launched the program with the help of a two-year, $180,000 grant from the Cambia Health Foundation. Attention to palliative care in nephrology has lagged behind its use for advanced cancer, for instance.

That’s especially true for Black patients and other minorities, who are disproportionately more likely than white patients to require dialysis, but far less likely to receive quality palliative or end-of-life care.

“We’re trying to address this current and projected gap,” Lam said. “What we are doing is asking people how do they want to live their lives and what’s most important to them.”

If McGee’s condition deteriorates to the point that she has a prognosis of six months or less to live, she will then be a candidate for a related partnership between the kidney center and the nonprofit which would allow her to continue to receive dialysis even after hospice care begins.

While the goal of both hospice and palliative care is pain and symptom relief, hospice has traditionally been regarded as comfort care without the intent to treat or cure the primary disease. The nuance with dialysis is that it is central to keeping a kidney patient’s body functioning; discontinuing it abruptly results in death within days.

“The goal of this program is to provide kind of a smooth off-ramp from curative dialysis to the end of their lives,” said Mackenzie “Mack” Daniek, who co-directs the hospice.

Most dialysis patients face a harrowing choice between continuing dialysis or receiving hospice services. That’s because the , which took effect in 1983, provides palliative care and support for terminally ill patients who have six months or less to live — and who agree to forgo curative or life-prolonging care.

That rigid requirement could change in the future. The Centers for Medicare & Medicaid Services has approved an that will allow concurrent care for some patients starting next year. But, for now, Medicare will not simultaneously pay for dialysis and hospice care for patients with a terminal diagnosis of kidney failure.

Hospices receive a daily per-patient rate from Medicare, typically $200 or less, and must use it to cover all services related to the terminal diagnosis. Dialysis can easily cost $250 a session, which means only the largest hospices, those with 500 or more patients, can absorb the costs of providing concurrent care. Only hospices in the U.S. meet that mark.

The result? About receive hospice care, compared with about half of the general Medicare population. And their median time spent in hospice care is about five days compared with more than 17 days for the general population. This means that dialysis patients often receive aggressive medical treatment until the very end of life, missing out on the comfort of targeted end-of-life care.

“What’s happened through the years is when a dialysis patient is ready to stop treatment, that’s when they come to hospice,” said Dr. Keith Lagnese, chief medical officer of the University of Pittsburgh Medical Center Family Hospice. “They’re forced to draw that line in the sand. Like many things in life, it’s not easy to do.”

Lagnese said the Seattle program is among the first in the U.S. to address palliative and hospice care among dialysis patients. His UPMC program, which has experimented with concurrent care, allows patients up to 10 dialysis treatments after they enter hospice care.

In the Washington state program, there’s no limit on the number of sessions a patient can receive. That helps ease the patient into the new arrangement, instead of abruptly halting the treatment they’ve been receiving, often for years.

“If they’re faced with immediately stopping, they feel like they’re falling off of a cliff,” said Lam, the program’s founder.

In McGee’s case, she’s had the benefit of palliative care for three years to help negotiate the daily struggles that come with dialysis. The care focuses on relieving the physical side effects, and emotional symptoms such as depression and anxiety. It also addresses spiritual needs, which McGee said has helped augment the comfort she finds as a member of the Baha’i religious faith.

“They provide mental support, and they inform you what you need to do to do things properly, and they’re your liaisons,” McGee said. “Basically, I was just living before without knowing the information.”

When she considers her degenerating medical condition and the possibility that it will become too difficult, even impossible, to continue dialysis long term, she said she welcomes the option to ease into the final stage of her life.

“Do I feel scared? At one point, I did,” McGee said. “But they are assuring me that my rights will be honored, they will be advocates for me when it happens. By having that support, it gives me my time to live.”

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But their deaths at the end of March were not the same. Liz, a vivacious matriarch at 72, died after two weeks sedated on a ventilator. Her analytical engineer husband, Robert, 78, chose no aggressive measures. He was able to communicate with their adult children until nearly the end.

Clinician Darrell Owens helped the Mar family navigate this incredibly difficult time.

“You cannot underestimate the stress on family members who cannot visit and are now in a crisis mode trying to talk this through over the phone,” said Owens, a who runs palliative and supportive care at the  in Seattle.

Owens, like other palliative care specialists in COVID-19 hot spots around the country, has seen his professional duties transformed by the deadly coronavirus. Patients and their families face abrupt decisions about the kind of care they want, and time for sensitive deliberation is scarce. Conversations once held in person are now over the phone, with all the nuances of nonverbal communication lost. The comfort of family at the bedside of the dying is all but gone.

This is the new reality for those who practice palliative medicine — a  focused on relieving pain and symptoms, improving quality of life, and providing support to patients and families during severe, chronic or fatal illness.

Doctors and nurses trained in this branch of medicine are in high demand as hospitals treat thousands of terribly ill patients who may end up on life support with only a small  of survival.

“This is a horrible virus that we don’t have a cure for,” Owens said. “As much as we are obligated to save people’s lives, we are as obligated to save their deaths.”

Before the coronavirus, Owens rarely worked in the emergency room. Now he’s there regularly, called in whenever a suspected or confirmed coronavirus patient at high risk of complications comes through the doors.

“It is a totally different atmosphere in an emergency room,” Owens said. “The conversations are more abbreviated than they would be because you are behind a mask, you are in a loud room, completely gowned up.”

Essential Conversations Under Strain

It’s a tough way to talk through sensitive and crucial questions about a patient’s chance of survival and what they want.

“This is completely unprecedented,” said Dr. Diane Meier, director of the  and a professor at the Icahn School of Medicine at Mount Sinai.

During the surge of coronavirus patients in New York City, Meier said, her hospital system set up a palliative care hotline for family members of patients.

“You can’t see their facial expression, all the cues you normally get with face-to-face communication are very hard to pick up over the phone,” Meier said.

Nonetheless, she said, these conversations — especially with such a fast-moving and poorly understood virus — are an essential piece of the pandemic response.

“Palliative care specialists are a scarce resource, just like ventilators and ICU beds,” she said.

Dr. Hope Wechkin,  of EvergreenHealth Hospice and Palliative Care in Kirkland, Washington, said palliative medicine is fundamentally about “being with patients during times of profound uncertainty, and continuing to place comfort and enhanced quality of life front and center.”

“We now have this new player [coronavirus] — as we are evaluating a patient’s goals of care,” she said.

One Family, Two Kinds Of Death

While much of the country was still waking up to the pandemic, siblings Angie Okumoto, Rich Mar and Rob Mar were already navigating these wrenching decisions about their parents’ care.

In early March, their mother, Liz, contracted the coronavirus and was admitted to the hospital.

Lively and hardworking,  was co-owner of the family’s popular Hawaiian restaurant, , which she founded with her daughter and son-in-law.

“She was one of those people that quickly made friends and made an impression on everyone,” said her son Rich. “Young people would look to her as a grandmother figure.”

Known for her warmth, she enjoyed giving customers a hug or word of advice. Angie said that when she and her siblings were growing up, her parents made sure they had family dinners, and her mother brought that same feeling of togetherness to their restaurants.

“She cared for people and wanted to know what was going on in their lives,” she said.

Liz had been in good health before contracting the virus. When her oxygen levels fell, her son took her to the ER.

“It was the last time I got to hear a response from her,” Rob said. “That was the hardest part — not knowing it would be the last time.”

The hospital was still adjusting its operations to account for the wave of COVID-19 patients and wasn’t yet specifically screening patients with the coronavirus about their end-of-life wishes.

As she was admitted, the hospital staff asked about what kind of medical interventions she wanted, if necessary. “Do you want CPR? Do you want to be put on life support?”

Their mother was weak but still conscious. She said yes. Her children agreed.

“We just had no idea what this virus was going to do,” Angie said. “We were trying to give her the opportunity to fight it.”

But their mother’s health worsened, and soon she was on a ventilator in the intensive care unit.

“For 14 days on the ventilator, she was alone,” Angie said. Her brother Rob adds: “That’s the part that hurts the most, and what will haunt me forever.”

Near the end, the three children did get to visit their mother one last time.

“We were all gowned up and she was sedated,” Rich said. “We were trying to talk to her and let her hear our voices.”

Meanwhile, their father, Robert, had also become sick. He had been a civilian operations analyst for the Navy.

“He was on a Ph.D. track and quit his program to support his new son, me,” Rob remembered. “My dad was more of the analytical type, he could give you a practical solution for everything.”

In the early years of his marriage, Robert was supporting a household of seven, including their grandparents. His children describe him as cerebral, a perfect complement to his more extroverted wife.

“They really meshed well together — it worked for them,” Rich said.

Robert was admitted to the same hospital as his wife. He seemed stable the first few days. But then his oxygen levels decreased and he started to decline.

He had been clear about his end-of-life care wishes.

“From Day One, he said he did not want to be on life support,” Angie said.

‘This Awful, Awful Truth’

Darrell Owens started managing Robert’s care. The family talked and texted with Owens. He’d give them regular updates and tell them what to expect.

“He had to deliver this awful, awful truth, but the way he did it was so compassionate,” Angie said. “He helped us arrange everything we needed for our dad.”

“I appreciated the honesty,” Rob said. “I found that the most reassuring and valuable thing.”

Because he had decided against aggressive treatment, their father was never moved to the ICU. He was able to have a few in-person visits with his three children. Since he wasn’t on a ventilator, they could have a conversation.

Rob said his father’s treatment at the end of his life was on his own terms: “That was very important to him.”

Owens managed Robert’s care to the very end, and ensured that Robert could read the last few text messages from his son.

“They were basically goodbyes,” Rich said.

Robert also shared memories with Owens about his wife and children.

“My dad opened up to him about ,” Angie said. “Dr. Owens knew quite a bit about us.”

The Mars are deeply grateful to the nurses and doctors who cared for their parents. They understand that hospitals are restricting visitors to minimize the chance of infection and preserve limited supplies of masks and gowns.

Still, it doesn’t stop Angie from wondering what might have been different if she had said goodbye to her mother before she was intubated, or had the chance to sit next to her while on the ventilator.

“What if I got to be bedside to my mom earlier, when she wasn’t heavily sedated, holding her hand and just being present,” Angie said. “That we’ll never know.”

It’s a new way of experiencing death that families are coming to know as the coronavirus keeps them at a distance in these final moments.

This story is part of NPR’s reporting partnership with Kaiser Health News.

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NEW DELHI — Pain, like death, is a universal phenomenon.

The sour grimace on the woman’s face, registering her bodily complaints to Dr. G.P. Dureja in his East Delhi office, would be recognized anywhere. Slouched shoulders, pinched forehead. She wore a willowy black kurta and cast a disapproving glance at the five pain physicians-in-training huddled behind Dureja, founder of Delhi Pain Management Centre and one of India’s pioneering pain physicians.

The five trainees, participants in the center’s acclaimed pain fellowship program, recorded the woman’s consultation on their smartphones, eager to see India’s famous pain doctor do his work. After their fellowships, they will return home, to Chennai, Kashmir, Rajasthan, ready to forge careers in India’s exploding pain industry.

The woman had been under Dureja’s care for some time now; he diagnosed her with fibromyalgia, a chronic neurological disorder of mysterious origin that causes pain throughout the body. But the regimen of Paracetamol and tramadol, an opioid analgesic, was not working and she was beyond fatigued. She wanted more relief.

Indians once thought of pain relief as an indulgence of the West, Dureja said after the woman left his office gripping her new prescriptions. The old way of thinking was, “Nobody has time to complain about pain in our country. But I’m getting five to seven new patients per day.”

Storefront for-profit pain clinics like Delhi Pain Management Centre are opening by the score across Mumbai, Kolkata, Bangalore and other cities in this teeming nation. After decades of stringent narcotics laws, borne of debilitating opium epidemics of centuries past, India is a country ready to salve its pain.

And American pharmaceutical companies — architects of the opioid crisis in the United States and avid hunters of new markets — stand at the ready to feed and fuel that demand.

For Indian cancer patients who once writhed in agony, there are fentanyl patches from a subsidiary of Johnson & Johnson.

For the country’s vast army of middle-class office workers wracked with back and neck pain, there is buprenorphine from Mundipharma, a network of companies controlled by the Sackler family, owners of Connecticut-based Purdue Pharma.

And for the hundreds of millions of aging Indians with aching joints and knees, there are shots of tramadol from Abbott Laboratories.

Palliative care advocates, who recount stories of patients enduring excruciating cancer pain or dying in agony, have persuaded reluctant government officials to allow high-powered opioid painkillers into doctors’ offices and onto chemists’ shelves in this nation of 1.37 billion people.

But what began as a populist movement to bring inexpensive, Indian-made morphine to the diseased and dying poor has given rise to a pain management industry that promises countless new customers to American pharmaceutical companies facing a government crackdown and mounting lawsuits back home.

The lure of a pain-free life is a revelation in a country where incomes are rising for many city dwellers and 300 million to 400 million people are approaching the middle class. Like other markers of the country’s post-colonial sprint into modernity, newly minted pain doctors promise aspiring Indians that life has more to offer in a body free from pain, and foreign brands are worth the extra rupees.

“Don’t listen to your forefathers,” Dureja said, a mantra for the shifting mindset. “They said you should tolerate pain, you should not complain, you should not take painkillers. Now, everybody wants a better quality of life, and everybody wants to get rid of pain early.”

As major pharmaceutical companies look to capitalize on the opportunity, the playbook unfolding in India seems eerily familiar. Earnest advocates share heartbreaking stories of suffering patients; physicians and pharmaceutical companies champion pain relief for cancer patients and persuade regulators to grant greater access to ever more powerful opioids; well-meaning pain doctors open clinics; shady pain clinics follow; and a spigot of prescription opioids opens — first addressing legitimate medical uses but soon spilling into the streets and onto the black market.

A looming deluge of addictive painkillers terrifies some Indian medical professionals, who are keenly aware that despite government regulations most drugs are available for petty cash at the chemist shops that occupy nearly every city block and village center.

“Are people going to figure out every trick in the game to make [opioid painkillers] widely available?” asked Dr. Bobby John, a leading Indian public health expert based in New Delhi. “Of course it will happen.”

‘The Market For Pain Is Good’

The headquarters of the Pain Clinic of India operates out of a closet-size office in Chembur, a tree-lined suburb in eastern Mumbai. The company’s presence on the internet is so prominent that Dr. Kailash Kothari, the clinic’s founder, has turned down requests from people in South Africa, Australia, Europe and the United States seeking prescription opioids.

Down an alleyway, the clinic’s small white-red-and-blue sign is difficult to spot. Around the side of a faded-pink building is a larger sign showing a shirtless, muscular white man gripping his back, another gripping his neck, another clutching his knee; a white woman with an excruciating headache presses her forehead and another grabs her shoulder. Back Pain. Neck Pain. Headache. Knee Pain. Shoulder Pain. Cancer Pain. The sign promises “Towards Pain Free Life.”

One of the principal architects of pain medicine in India, Kothari runs several clinics in Mumbai, consults at numerous hospitals and flies to his clinic in Goa once a week. He co-founded the Indian Academy of Pain, an educational branch of the Indian Society for the Study of Pain that aims to create standardized training for pain medicine, in part by offering qualifying exams to prospective physicians. “This program is going to change the scenery of what we have in pain management,” Kothari said.

Asserting control over who can call themselves a “pain medicine doctor” in this fledgling industry is an urgent question. Spread across the subcontinent are nearly 10 million licensed physicians and a massive number of untrained medical providers. (In rural India, 70% of health care providers have no formal medical training.)

“General practitioners have started prescribing these drugs,” Dureja said. “And we’re not educating the population on when to use and not to use.”

At Dureja’s clinics, as at most medical offices in India, patients pay cash for services and prescriptions. Delhi Pain Management charges $10 for a consultation; $10 for a Johnson & Johnson fentanyl patch; $10 for a Mundipharma buprenorphine patch. Dureja’s office takes a 15% cut of sales.

There are hints of American pharma’s fingerprints in a glass cabinet in the waiting room of his East Delhi clinic: awards from Johnson & Johnson honoring Dureja for symposia on pain management; a plaque for “his valuable contribution as a speaker” about tapentadol, an opioid marketed by Johnson & Johnson in 2009. The dispensing counter does a brisk business in Ultracet, branded tramadol tablets made by a Johnson & Johnson subsidiary.

Dureja’s training fellowships, like Kothari’s, are broadly considered on the level; but many others are shady, and none are regulated.

Each year, some 20 fellows attend Kothari’s three- to six-month training programs, and by his calculation, he has trained 150 aspiring pain doctors. “There are more than 50 people who already have their pain clinics in different parts of India,” he said. Of those clinics, five or six “are training people, and it’s a chain reaction, which is going to benefit pain management as a specialty.”

Kothari remembers when only a few hospitals in Mumbai treated cancer patients and had access to opioids. “But every year, we are accessing more of these kinds of drugs,” he said. “Many chemists, hospitals and medical shops started acquiring the licenses for keeping these drugs, and availability is much, much better. Opioids are available in not just oral, but injectable, patches, syrups.”

Most large Indian hospitals have added pain management as a specialty in recent years. At the insistence of the professional societies that accredit hospitals in India, Kothari said, nurses and doctors now are required to assess pain as a fifth vital sign, along with pulse, temperature, breathing and blood pressure.

The pharmaceutical industry has kept pace. Twenty years ago, only a few pharmaceutical companies marketed pain medicines in India, Kothari said. “Today, almost every company is having pain management as a separate division. In the last five years alone, I must have met more than 15 or 20 companies that have started separate pain management divisions.”

A salesman for Sun Pharma, India’s largest drugmaker by sales, echoed the point during an interview in Chandigarh, the capital of Punjab and Haryana. The market for pain medications “has totally changed” in the past five years, he said. He shifted nervously and agreed to speak frankly only if his name wasn’t published, for fear of losing his job.

“Now everyone has a car, and [they get] back pain, and now they take medication.” Growing obesity rates in India were also fueling demand, he said, as patients look for relief from weight-related knee and back pain. “So the market for pain is good.”

Abbott Laboratories and Johnson & Johnson did not respond to requests for comment for this report.

Manmohan Singh, a vice president at Modi-Mundipharma in New Delhi, said opioid pain medications are an important therapeutic option, especially for cancer pain. He also said company promotions stress that physicians should familiarize themselves with product safety information. “Patients should be made aware of the clear treatment goals related to pain and function, as well as the potential opioid side effects and the potential for misuse, abuse and addiction,” he said in a written statement.

One False Step

The ascendance of pain management in India comes at a fortuitous political moment. Ahead of his reelection earlier this year, Prime Minister Narendra Modi invested heavily in health care. Last fall, the Indian government launched the world’s biggest public health insurance program, called Ayushman Bharat. Dubbed “Modicare,” it guarantees half a billion poor Indians nearly $7,000 in hospital expenses, paid to private insurers, and, by 2020, the government is to open 150,000 primary care centers. The government has set aside $484 million to fund Modi’s signature program.

None of this would have been possible without the loosening of India’s strict narcotics laws.

The International Narcotics Control Board, established in 1968, and the Narcotic Drugs and Psychotropic Substances Act of 1985 codified the bureaucratic thicket for any doctor who wanted to prescribe opioid painkillers. Physicians feared fines, jail sentences and losing their medical license if they skirted regulations. While the government granted licenses to Indian farmers to grow poppies, most of the morphine produced from the crops was exported.

Dr. M.R. Rajagopal was a young medical student in Thiruvananthapuram at the time and remembers a neighbor with advanced cancer. “I [had] seen him screaming his way over weeks to death,” Rajagopal said. “It was horrendous, and there was nothing being done about it.” He chose to become an anesthesiologist because it was the only specialty then focused on pain.

Rajagopal is widely viewed as the father of palliative care in India; whispers of a Nobel Prize follow him. For decades, he has worked assiduously to convince national and state lawmakers that opioid medicines are not an indulgence but a humane refuge, and it is largely a function of his advocacy that morphine and other painkillers can be prescribed in India. “Two generations of doctors had not seen a tablet of morphine,” he said.

The , as amended in 2014, recognized that the need for pain relief was “an important obligation of the government.” The revised law created a class of medicines called the “” list, which includes morphine, fentanyl, methadone, oxycodone, codeine and hydrocodone.

Rajagopal’s days are filled with the tedious work of building a movement: speaking at colleges and public forums, penning editorials and medical papers about palliative care and overseeing Pallium India, a nonprofit medical center and training institute that is singularly focused on palliative care.

Pallium’s pharmacy is a testament to Rajagopal’s persistence. Drugs once banned now fill the shelves: fentanyl injections and patches, oral morphine and, most recently, methadone, approved for pain relief in 2018.

Rajagopal seems aware that one false step would invite the government to clamp down on the availability of opioids, reversing decades of his work. He does not advise using oxycodone or hydrocodone, though they are included on the “essential narcotic drugs” list, and he does not accept funding from pharmaceutical companies, instead putting his hand out to temple trustees and for donations from families cared for by Pallium’s home visiting teams.

But the pharmaceutical industry is a wily adversary. American activists made many of the same arguments decades ago as they sought relief for dying patients. Drugs now commonly prescribed for chronic pain first were approved for use by cancer patients. One of the first formulations of fentanyl, for example, was a lollipop because chemotherapy left cancer patients too nauseated to eat. In India, pain physicians now prescribe fentanyl patches to patients with chronic muscular pain.

Purdue Pharma’s international affiliate, Mundipharma, “is very good at co-opting regulators,” said Keith Humphreys, a professor of psychiatry at Stanford University. “As happened in the U.S., they are easily converted into useful idiots.”

Read part two of this two-part series: “In India’s Slums, Painkillers Part Of Daily Routine.”

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Brandt’s death was announced on social media by her wife and partner of 18 years, Kimberly Acquaviva, 47, a professor of nursing and author of a book about hospice care for LGBTQ patients and families.

“I wanted all of you to know that Kathy had a peaceful death and your love and support is what made that possible,” Acquaviva wrote posted to Facebook. “Our family has felt your love and we can’t begin to tell you how much it’s meant to us.”

Brandt died at the Charlottesville, Va., home she shared with her wife, their 19-year-old son, Greyson Acquaviva, and their dogs, Dizzy and Mitzi. She was diagnosed in January with stage 3 ovarian clear cell carcinoma, a rare and aggressive cancer.

For the past several months, Brandt and Acquaviva chronicled the day-to-day drama of dying in a series of frank, intimate posts on and aimed at demystifying the process and empowering other patients.

After researching her disease, which has a and often fails to respond to chemotherapy, Brandt refused drug treatment, declining what she regarded as “futile” medicine. Instead, she chose aggressive palliative care to manage her symptoms, to the dismay of some friends and family — and even her oncologist.

“If it’s not going to save my life, then why would I go through trying to get an extra month, when that month leading up to it would be terrible?” Brandt told Kaiser Health News in April.

The couple’s posts were followed by hundreds of well-wishers to help defray living expenses and medical costs. The essays and tweets were an unusually intimate window into the physical, emotional and psychological process of dying.

In April, Brandt described herself as a “dead woman walking” on the sidewalks of Washington, D.C., where they lived until June.

“It’s surreal trying to go about a ‘normal’ life when you know you aren’t going to be around in a few months,” she wrote.

During the last weeks of Brandt’s illness, Acquaviva tweeted about her partner’s bowels, posted photos of her sleeping and shared that Brandt was distressed about what would happen to her and to her family when she died. The frank posts prompted concern from people who asked whether Brandt had consented to have her death live-tweeted for the world. Acquaviva replied:

“My wife @Kathy_Brandt is a hospice and palliative care professional, as am I. She decided early on that she wanted us to share her dying process — all of it — publicly so that she could keep educating people about death and dying until her last breath.”

A well-known hospice industry leader and consultant, Brandt spent three decades in the field and was most recently tapped to write and edit the latest version of 

The willingness of Brandt and Acquaviva to share an unflinching account of terminal cancer drew praise from fellow hospice and palliative care experts, said Jon Radulovic, a spokesman for the National Hospice and Palliative Care Organization and their longtime friend.

“As she did throughout her professional career, Kathy has continued to teach the field about compassionate care and patient self-determination,” he wrote in an email before her death.

Elena Prendergast, an assistant professor of nursing at Augusta University in Georgia, wrote that she was moved by their experience.

“I have gone through this with family and with patients, but somehow you both have found a way. With your humor and raw transparency, you both make me feel like I am learning about this process for the first time,” Prendergast tweeted last month.

Brandt remained passionate about encouraging patients to consider the full range of choices when confronting terminal illness.

“If you’re ever diagnosed with a disease that will ultimately kill you no matter what you do, think through what you want the rest of your life to look like,” she wrote in a July 11 email. “Then seek out care that will help you make that version a reality.”

Acquaviva said they had worried that Brandt would not receive the care they’d hoped for in a hospice setting — despite their long efforts to advocate for better conditions for LGBTQ people.

In a post on their gofundme page, Acquaviva urged: “Do whatever you can to ensure that ALL LGBTQ+ people — not just those who know who to call or what to ask for — have access to hospice care provided by professionals who will treat them with dignity, respect, and clinical competence.”

Brandt asked that her obituary appear in The New York Times. It is scheduled to run next weekend, Acquaviva said, and it includes a final request that nods to the activism that characterized Brandt’s work on behalf of LGBTQ people and others who need end-of-life care.

“From the time that Kathy was diagnosed with clear cell ovarian cancer six months ago, she was clear with her family that the cause of death should be listed as the Trump Presidency in her obituary. In lieu of flowers, the family asks that donations be sent to whichever candidate secures the Democratic nomination, even if you really wish someone better were running.”

A memorial for Brandt will be held at 2 p.m. Oct. 26 at Friends Meeting of Washington, 2111 Florida Ave. NW, Washington, D.C. 20008.

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El cirujano de un hospital universitario de Boston resaltó las posibles complicaciones. Karen McHenry, la hija de Bob, recuerda haber sentido que no había más remedio que decir “adelante”.

Con pesar, es una escena que, desde entonces, ha reproducido en su mente cientos de veces.

En la mesa de operaciones, Bob McHenry tuvo un derrame cerebral. Durante varios días estuvo en coma. Cuando se despertó, no podía tragar ni hablar y tenía un deterioro cognitivo significativo. La demencia vascular y un mayor deterioro físico siguieron, hasta la muerte del paciente cinco años después.

Antes de la cirugía de su padre, en octubre de 2012, “no hubo una discusión amplia sobre cómo sería su vida si las cosas no salían bien”, dijo Karen McHenry, de 49 años, quien escribe sobre el cuidado de los padres mayores. “Ni siquiera pudimos imaginar lo que terminó pasando”.

Es una queja común: los cirujanos no ayudan a los mayores y a sus familias a comprender el impacto de la cirugía en términos que las personas puedan entender; a pesar que los pacientes mayores enfrentan un mayor riesgo de complicaciones posteriores. Tampoco se involucran rutinariamente en una “toma de decisiones compartida”, que implica descubrir qué es lo más importante para los pacientes, y discutir el posible efecto de la operación en sus vidas antes de establecer una guía para el tratamiento.

Resulta que los pacientes mayores a menudo tienen prioridades diferentes que los más jóvenes. Más que la longevidad, en muchos casos, valoran su capacidad de vivir de manera independiente, y pasar tiempo de calidad con sus seres queridos explica el doctor Clifford Ko, profesor de cirugía en la Escuela de Medicina David Geffen de la Universidad de California, Los Angeles (UCLA).

Ahora, el American College of Surgeons ha aprobado destinados a mejorar la atención quirúrgica de los adultos mayores. Todos los pacientes de edad avanzada deben tener la oportunidad de discutir sus objetivos de salud y las metas de la cirugía, así como sus expectativas para su recuperación y su calidad de vida después.

Los cirujanos deben revisar con anticipación las instrucciones del paciente (la atención que desean en caso que una crisis médica ponga en peligro la vida) u ofrecer a los pacientes sin estos documentos la oportunidad de completarlos. Los que están autorizados para tomar decisiones y actuar en nombre de un paciente deben figurar en el registro médico.

Si se espera una estadía en cuidados intensivos después de la cirugía, debe aclararse, junto con las instrucciones del paciente, si se utilizarán, por ejemplo, sondas de alimentación, diálisis, transfusiones de sangre, reanimación cardiopulmonar o ventilación mecánica.

Esto está muy lejos de cómo suele funcionar el “consentimiento informado”. En general, los cirujanos explican a un paciente mayor el problema físico, cómo la cirugía lo puede corregir y qué complicaciones son posibles, respaldándose en estudios científicos.

“Lo que no preguntamos es: ¿Qué significa vivir bien para ti? ¿Qué esperas poder hacer el próximo año? ¿Y qué debo saber sobre yo, como médica, para brindarte una buena atención?”, señaló la doctora Ronnie Rosenthal, profesora de Cirugía y Geriatría en la Escuela de Medicina de Yale y colíder de la Coalition for Quality in Geriatric Surgery Project.

Rosenthal comenta sobre un paciente de 82 años con cáncer rectal en etapa inicial. El hombre había sufrido un derrame cerebral 18 meses antes, y tenía dificultades para caminar y tragar. Vivía con su esposa, quien tenía insuficiencia cardíaca congestiva, y había sido hospitalizado con neumonía tres veces desde su accidente cerebrovascular.

Rosenthal le explicó a este paciente que, si ella lo operaba para extirpar el cáncer, podría pasar a la unidad de cuidados intensivos con una máquina de respiración y luego terminar en un centro de rehabilitación.

“No, no quiero eso; quiero estar en casa con mi esposa”, recordó Rosenthal.

El hombre rechazó la cirugía. Su esposa murió 18 meses después, y él vivió otros seis meses antes de sufrir un derrame cerebral fatal.

Los cirujanos pueden ayudar a guiar las discusiones que requieren una toma de decisiones compleja haciendo cinco preguntas, según la doctora Zara Cooper, profesora asociada de Cirugía en la Facultad de Medicina de Harvard:

¿Cómo afecta tu salud a tu vida cotidiana? Cuando piensas en tu salud, ¿qué es lo más importante para ti? ¿qué esperas obtener de esta operación? ¿qué condiciones o tratamientos de salud te preocupan más? y ¿qué habilidades o capacidades son tan importantes para ti que no te imagines vivir sin ellas?

Cooper recuerda a un hombre de 88 años gravemente herido en un accidente automovilístico que llegó a la sala de emergencias hace varios años.

“Cuando comenzamos a explicarle a su familia cómo sería su vida, que sería con una alta dependencia funcional y que ya no podría vivir de forma independiente, su esposa dijo que sería absolutamente devastador, especialmente si no podía esquiar. Ni siquiera imaginamos que esto estaba en el ámbito de lo que alguien de esta edad podría querer hacer”, comentó Cooper.

La familia decidió no buscar tratamiento y el paciente falleció.

A veces, los cirujanos tienen la percepción equivocada de que los pacientes mayores quieren seguir las recomendaciones, en lugar de participar en las decisiones médicas, dijo el doctor Clarence Braddock, profesor de medicina en la UCLA. En grupos focales, el 97% de las personas mayores dijeron: “Prefiero que mi médico me ofrezca opciones y me pida mi opinión”, según la que Braddock publicó en 2012.

Sin embargo, en otro en el que participaron adultos mayores, Braddock descubrió que los cirujanos ortopedistas casi nunca tomaron en cuenta el papel del paciente en la toma de decisiones (solo el 15% del tiempo) o evaluaban la comprensión del paciente sobre lo que implicaría la cirugía (12% del tiempo).

En la Universidad de Wisconsin-Madison, la doctora Margaret Schwarze, profesora asociada de cirugía vascular, ha desarrollado una herramienta llamada “” para ayudar a los cirujanos a comunicarse de manera más efectiva con pacientes mayores.

“La idea es contarle al paciente una historia en términos que puedan entender”, dijo Schwarze.

Por ejemplo, en lugar de citar estadísticas sobre el riesgo de neumonía o infección, un cirujano explica los dos escenarios: qué podría pasar si las cosas salen bien o mal. ¿Tendría dolor el paciente? ¿necesitaría cuidados de enfermería? ¿sería capaz de regresar a casa y volver a hacer las cosas que le gustaban? ¿ese paciente que acabará en la unidad de cuidados intensivos, sería capaz de caminar solo?

Se presenta una gama similar de posibilidades para una alternativa de tratamiento. Luego, el cirujano identifica los resultados más probables para la cirugía y la alternativa, según las circunstancias del paciente.

“Pasar por una operación importante cuando eres una persona mayor va a cambiar tu vida”, dijo Schwarze. “Nuestro objetivo es ayudar a esos pacientes mayores a imaginar cómo serían estos cambios”.

Debido a la experiencia de su padre, Karen McHenry fue cautelosa cuando su madre, Marjorie McHenry, se cayó y se rompió cinco costillas en el otoño de 2017. En el hospital, los médicos diagnosticaron un sangrado interno significativo, un pulmón colapsado, y recomendaron una cirugía pulmonar complicada.

“Esta vez, sabía qué preguntas hacer, pero aún era difícil obtener una respuesta útil de los cirujanos”, dijo Karen. “Tengo un recuerdo vívido del médico diciendo: ‘Bueno, soy un cirujano increíble”. Y pensé: “Estoy segura que sí, pero mi madre tiene 88 años y es frágil. Y no veo cómo esto pueda terminar bien”.

Después de consultar con el equipo de cuidados paliativos del hospital y de una conversación sincera con su hija, Marjorie McHenry decidió no someterse a la cirugía. Casi tres años después, ella es mentalmente lúcida, se mueve con un andador y realiza muchas actividades en su residencia para adultos mayores.

“Nos arriesgamos a que mamá pudiera tener una vida más corta, pero con una mejor calidad de vida sin cirugía”, dijo Karen. “Y ganamos esa apuesta, después de haberla perdido con mi papá”.

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The surgeon at a Boston teaching hospital ticked off the possible complications. Karen McHenry, the patient’s daughter, remembers feeling there was no choice but to say “go ahead.”

It’s a scene she’s replayed in her mind hundreds of times since, with regret.

On the operating table, Bob McHenry had a stroke. For several days, he was comatose. When he awoke, he couldn’t swallow or speak and had significant cognitive impairment. Vascular dementia and further physical decline followed until the elderly man’s death five years later.

Before her father’s October 2012 surgery, “there was not any broad discussion of what his life might look like if things didn’t go well,” said Karen McHenry, 49, who writes about caring for older parents. “We couldn’t even imagine what ended up happening.”

It’s a common complaint: Surgeons don’t help older adults and their families understand the impact of surgery in terms people can understand, even though older patients face a higher risk of complications after surgery. Nor do they routinely engage in “shared decision-making,” which involves finding out what’s most important to patients and discussing surgery’s potential effect on their lives before setting a course for treatment.

Older patients, it turns out, often have different priorities than younger ones. More than longevity, in many cases, they value their ability to live independently and spend quality time with loved ones, according to Dr. Clifford Ko, professor of surgery at UCLA’s David Geffen School of Medicine.

meant to improve surgical care for older adults have been endorsed by the American College of Surgeons. All older patients should have the opportunity to discuss their health goals and goals for the procedure, as well as their expectations for their recovery and their quality of life after surgery, according to the standards.

Surgeons should review their advance directives — instructions for the care they want in the event of a life-threatening medical crisis — or offer patients without these documents the chance to complete them. Surrogate decision-makers authorized to act on a patient’s behalf should be named in the medical record.

If a stay in intensive care is expected after surgery, that should be made clear, along with the patient’s instructions on interventions such as feeding tubes, dialysis, blood transfusions, cardiopulmonary resuscitation and mechanical ventilation.

This is far cry from how “informed consent” usually works. Generally, surgeons explain to an older patient the physical problem, how surgery is meant to correct it and what complications are possible, backed by references to scientific studies.

“What we don’t ask is: What does living well mean to you? What do you hope to be able to do in the next year? And what should I know about you to provide good care?” said Dr. Ronnie Rosenthal, a professor of surgery and geriatrics at Yale School of Medicine and co-leader of the Coalition for Quality in Geriatric Surgery Project.

Rosenthal tells of an 82-year-old patient with early-stage rectal cancer. The man had suffered a stroke 18 months earlier and had difficulty walking and swallowing. He lived with his wife, who had congestive heart failure, and had been hospitalized with pneumonia three times since his stroke.

Rosenthal explained to the man that if she operated to remove the cancer, he might land in the ICU with a breathing machine and then end up at a rehabilitation facility.

“No, I don’t want that; I want to be home with my wife,” Rosenthal recalled his saying.

The man declined the surgery. His wife died 18 months later, and he lived another six months before he had a fatal stroke.

Surgeons can help guide discussions that require complex decision-making by asking five questions, according to Dr. Zara Cooper, associate professor of surgery at Harvard Medical School:

How does your health affect your day-to-day life? When you think about your health, what’s most important to you? What are you expecting to gain from this operation? What health conditions or treatments worry you most? And what abilities are so critical to you that you can’t imagine living without them?

Cooper recalls an 88-year-old man seriously injured in a car crash arriving in the emergency room several years ago.

“When we started explaining to his family what his life would be like — that he would be highly functionally dependent and not able to live independently again — his wife said that would be absolutely devastating, especially if he couldn’t ski,” Cooper said. “We didn’t even anticipate this was in the realm of what someone this age would want to do.”

The family decided not to pursue treatment, and the patient died.

Sometimes surgeons make the misguided assumption that older patients want to follow recommendations rather than having input into medical decisions, said Dr. Clarence Braddock, professor of medicine at UCLA. In focus groups, 97% of seniors said “I prefer that my doctor offer me choices and ask my opinion,” according to Braddock published in 2012.

Yet in another involving older adults, Braddock found that orthopedic surgeons rarely discussed the patient’s role in decision-making (only 15% of the time) or assessed the patient’s understanding of what surgery would entail (12% of the time).

At the University of Wisconsin-Madison, Dr. Margaret Schwarze, an associate professor of vascular surgery, has developed a tool called “” to help surgeons communicate more effectively with older patients.

“The idea is to tell the patient a story in terms they can understand,” Schwarze said.

Instead of citing statistics on the risk of pneumonia or infection, for instance, a surgeon would explain what might happen if things went well or badly. Would the patient be in pain? Would she need nursing care? Would he be able to return home and do things he liked to do? Would she land in the ICU? Would he be able to walk on his own?

A similar range of possibilities is presented for a treatment alternative. Then the surgeon identifies the most likely outcomes for surgery and the alternative, based on the patient’s circumstances.

“Going through a major operation when you’re older is going to change your life,” Schwarze said. “Our goal is to help older patients imagine what these changes might look like.”

Because of her father’s experience, Karen McHenry was cautious when her mother, Marjorie McHenry, fell and broke five ribs in fall 2017. At the hospital, doctors diagnosed significant internal bleeding and a collapsed lung and recommended a complicated lung surgery.

“This time around, I knew what questions to ask, but it was still hard to get a helpful response from the surgeons,” Karen said. “I have a vivid memory of the doctor saying, ‘Well, I’m an awesome surgeon.’ And I thought to myself, ‘I’m sure you are, but my mom is 88 years old and frail. And I don’t see how this is going to end well.’”

After consulting with the hospital’s palliative care team and a heart-to-heart talk with her daughter, Marjorie McHenry decided against the surgery. Nearly three years later, she’s mentally sharp, gets around with a walker and engages in lots of activities at her nursing home.

“We took the risk that Mom might have a shorter life but a higher quality of life without surgery,” Karen said. “And we kind of won that gamble after having lost it with my dad.”

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After Acquaviva’s talk, an older nurse announced she would change how she treats LGBTQ people under her care.

“I still think you’re going to hell, but I’m going to stop telling patients that,” the nurse told Acquaviva.

Acquaviva, a professor at the George Washington University School of Nursing in Washington, D.C., raised the example Tuesday at a panel hosted by Kaiser Health News on inclusive care for LGBTQ seniors. It was one of many examples of discrimination that these older adults may face as they seek medical care.

LGBTQ baby boomers, dubbed “the Stonewall Generation,” came of age just as the 1969 New York uprising galvanized a push for gay rights. After living through an era of unprecedented social change, they’re facing new challenges as they grow old.

“Fifty years after Stonewall, there’s a new generation of LGBT elders who never thought they’d get an AARP card,” said Nii-Quartelai-Quartey, AARP’s senior adviser and national liaison on the issue who also participated in Tuesday’s panel.

By 2030, there will be an estimated 7 million LGBT people in America over 50. About 4.7 million of them will need elder care and services,

In a country where most elder care is left to family, many LGBTQ people are estranged from relatives and don’t have that option. Turning to others for care — in assisted living centers, nursing homes or hospice settings — makes them uniquely vulnerable.

“The fear of living in a situation where they can’t advocate for their own care and safety is terrifying,” said Hilary Meyer, chief enterprise and innovation officer for SAGE.

Three-quarters of LGBT people are worried about having adequate family or social supports, according to a nationally representative released last year.

More than a third are concerned they’ll have to hide their identity to find suitable housing as they age. And at least 60% are concerned about neglect, harassment and abuse, the survey showed.

Often, those fears are founded, according to results of a of more than 850 hospice and palliative care providers about LGBT patients and family experiences.

“I think the information we’ve got is actually quite discouraging and quite concerning,” said Gary Stein, a professor at the Wurzweiler School of Social Work at Yeshiva University who co-led the project.

Most providers surveyed said LGBT people received discriminatory care, he said. For transgender patients, two-thirds said that was true.

Caregivers reported hundreds of examples of disrespectful treatment, Stein said.

When LGBT couples would hold hands, staff “might roll their eyes, make faces at each other,” he said. They often failed to consult the patients’ partners, directing questions to biological family members instead.

In several instances, staff would “try to pray” to the patient or their family, Stein said.

Some LGBT patients were left in soiled diapers or rationed pain medication in a “punishing way” because of their sexual identity, he added.

“For transgender patients, there was lots of discomfort around what to call the person,” Stein said. “A number of people said patients were called ‘it’ instead of a pronoun.”

Twenty states have laws that specifically protect LGBT people against discrimination, but most don’t, Stein noted. A recently enacted Trump administration “conscience rule” allows providers to decline to provide care that goes against their moral or spiritual beliefs. Advocates said the new rule could make it easier to discriminate against LGBTQ people.

Still, a growing number of senior housing and care sites are putting non-discrimination policies in place and training personnel to provide LGBTQ-inclusive care.

The SAGE staff has trained more than 50,000 people at more than 300 sites nationwide, Meyer said. They learn best practices for asking questions that don’t perpetuate stigma.

“It’s even something as simple as asking somebody, a woman, if her husband will be visiting,” said Meyer, noting that the question forces the person to decide whether to announce her sexual identity. “Having to come out of the closet that way can be very challenging.”

In a few high-profile instances, LGBTQ couples or individuals have sued providers for discrimination.

In 2016, Lambda Legal, a gay advocacy group, sued an Illinois senior residential facility for failing to protect Marsha Wetzel, 70, a disabled lesbian, from harassment and violence by other residents. The 7th Circuit Court of Appeals ruled that a landlord may be held liable under the Fair Housing Act for failing to protect a tenant from known, discriminatory harassment by other tenants.

Karen Loewy, Wetzel’s attorney, would say only that “the matter has been resolved,” and Wetzel is now living at a Chicago-area facility.

Last summer, in Missouri, a married lesbian couple, Mary Walsh, 73, and Bev Nance, 69, sued a senior-living facility that denied their housing application. The Friendship Village assisted living center cited a “cohabitation policy” that defines marriage as between one man and one woman as the reason.

A U.S. district judge dismissed the suit in January, saying that their claims of  discrimination were “based on sexual orientation rather than sex alone.” The distinction is important because neither federal nor state laws explicitly prohibit discrimination based on sexual orientation. The suit has been stayed pending Supreme Court decisions that could affect the outcome.

In the meantime, the couple has remained in their single-family home, where Walsh has developed health problems, said their lawyer, Julie Wilensky of the National Center for Lesbian Rights.

“They wanted to be planning in advance so that they would have stability when issues might come up in the future,” Wilensky said.

Not every LGBTQ person will want to step forward in the way Wetzel, Walsh and Nance have, said Loewy.

“When you feel like you’re being denied care … you may not want to be out there to wave the banner,” she said.

Finding an LGBTQ-tolerant facility can be difficult. People are often bound by geography, and options are limited.

Still, LGBT people and their families can — and should — have candid conversations with potential caregivers before they make a choice, Loewy said.

One key question: Ask what kind of experience staff have working with LGBTQ people.

“If they say they haven’t [treated any such patients], don’t believe them,” Loewy said. “You want to hear a real clear commitment to ensuring every resident of this facility is going to be treated with dignity.”

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For a generation of LGBTQ+ people who lived through unprecedented social change, getting older poses new challenges. When it comes to seeking elder care, concerns about lack of services, discrimination, neglect and even abuse threaten to reverse recent progress.

What are the hurdles to quality care that face growing numbers of aging LGBTQ+ people? By 2030, an estimated 7 million LGBTQ+ people in the U.S. will be older than 50, and as many as 4.7 million will be seeking care and services.

Our conversation was aimed at people who may be part of the LGBTQ+ community ― as well as their loved ones and their caregivers. We talked about what quality care for elder LGBTQ+ individuals looks like, what types of overt and covert discrimination they may face and the documented concerns of the community revealed in recent research. We also heard how two longtime hospice experts are facing end-of-life issues in a personal way.

The panel, moderated by JoNel Aleccia, a KHN senior correspondent, included:

• Kimberly D Acquaviva, Ph.D., MSW, CSE, professor at the George Washington University School of Nursing in Washington, D.C., and author of the 2017 book “LGBTQ-Inclusive Hospice and Palliative Care: A Practical Guide to Transforming Professional Practice.” On Aug. 1, she will be joining the University of Virginia School of Nursing in an endowed professorship. She is the wife and caregiver of Kathy Brandt, who is dying of ovarian cancer.
• Kathy Brandt, MS, founder of the KB Group, a palliative care consulting firm in Washington, D.C. She wrote and edited the National Consensus Project’s Clinical Practice Guidelines for Quality Palliative Care, 4th edition, and is a former leader at the National Hospice and Palliative Care Organization, NHPCO. She is the wife of Dr. Acquaviva and was diagnosed this year with terminal ovarian cancer.
• Aaron Tax, JD, director of advocacy for SAGE: Services and Advocacy for LGBT Elders. He advocates for LGBTQ+ inclusive federal aging policies that account for the unique needs of LGBTQ+ older adults.
• Sean Squires, MSN, RN, team director for Seasons Hospice & Palliative Care of Maryland, one of more than 300 providers nationwide to receive SAGE certification for LGBTQ+ care.
• Nii-Quartelai Quartey, MA, Ed.D, AARP’s senior advisor and national LGBTQ+ liaison and key spokesperson for the AARP’s 2018 research report, “Maintaining Dignity,” which looked at concerns of LGBTQ+ Americans age 45 and older.
• Joe Wardenski, MPP, JD, counsel at Relman, Dane & Colfax, a national civil rights law firm based in Washington, D.C. He is co-counsel on Walsh v. Friendship Village, a Fair Housing Act case challenging a St. Louis-area senior living community’s refusal to allow Mary Walsh and Bev Nance, a married same-sex couple, to live in their community because of their relationship.

Ñî¹óåú´«Ã½Ò•îl Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about .

USE OUR CONTENT

This story can be republished for free (details).