Category: Healing and Helping Professionals

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In Palliative Care, Comfort Is the Top Priority

By Paula Span

Palliative Care

Last year, when an oncologist advised that Betty Chin might benefit frompalliative care, her son Kevin balked.

Mrs. Chin, a retired nurse’s aide who lives in Manhattan’s Chinatown, was undergoing treatment for a recurrence of colorectal cancer. Her family understood that radiation and chemotherapy wouldn’t cure her, but they hoped doctors could keep the cancer at bay, perhaps shrinking her tumor enough to allow surgery or simply buying her more time.

Mrs. Chin, 84, was in pain, fatigued and depressed. The radiation had led to diarrhea, and she needed a urinary catheter; her chemotherapy drugs caused nausea, vomiting and appetite loss.

Palliative care, which focuses on relieving the discomfort and distress of serious illness, might have helped. But Mr. Chin, 50, his mother’s primary caregiver, initially resisted the suggestion.

“The word ‘palliative,’ I thought of it as synonymous with hospice,” he said, echoing a common misperception. “I didn’t want to face that possibility. I didn’t think it was time yet.”

In the ensuing months, however, two more physicians recommended palliative care, so the Chins agreed to see the team at Mount Sinai Hospital.

They have become converts. “It was quite a relief,” Mr. Chin said. “Our doctor listened to everything: the pain, the catheter, the vomiting, the tiredness. You can’t bring up issues like this with an oncologist.”

Multiple prescriptions have made his mother more comfortable. A social worker helps the family grapple with home care schedules and insurance. Mr. Chin, who frequently translates for his Cantonese-speaking mother, can call nurses with questions at any hour.

Challenges remain — Mrs. Chin still isn’t eating much — but her son now wishes the family had agreed to palliative care earlier.

Perhaps it’s not surprising that many families know little about palliative care; it only became an approved medical specialty in 2007. It has grown rapidly in hospitals: More than 70 percent now offer palliative care services, including 90 percent of those with more than 300 beds.

But most ailing patients aren’t in hospitals, and don’t want to be. Outpatient services like Mount Sinai’s have been slower to take hold. A few hundred exist around the country, estimates Dr. Diane Meier, who directs the Center to Advance Palliative Care, which advocates better access to these services.

Dr. Meier said she expects that number to climb as the Affordable Care Act and Medicare continue to shift health care payments away from the fee-for-service model.

Because most people with serious illnesses are older, seniors and caregivers should understand that palliative care offers more care as needed, not less. Unlike hospice, patients can use it at any point in an illness — many will “graduate” as they recover — without forgoing curative treatment.

Like hospice, however, palliative care focuses on quality of life, providing emotional and spiritual support for patients and families, along with drugs and other remedies to ease symptoms. Its practitioners help patients explore the complex medical decisions they often face, then document their preferences.

It pays off for patients and families. In 2010, a randomized trial of 151 patients with metastatic lung cancer at Massachusetts General Hospital found that those who received early palliative care scored significantly higher on quality of life measures than those receiving standard care, and were less likely to suffer from depression.

They were also less likely to get aggressive end-of-life treatment like chemotherapy in their final weeks. Yet they survived several months longer.

Other studies have found similar benefits. Compared with control groups, palliative care patients get greater relief from the breathlessness associated with lung diseases; they’re less likely to spend time in intensive care units; they report greater satisfaction with care and higher spiritual well-being.

And they do better if they seek palliative care early. A new study conducted at the cancer center at the University of California, San Francisco, found that of 922 patients who had died, most in their 60s and 70s, those who had received palliative care for 90 days or more were less likely to have late-life hospitalizations and to visit intensive care units or emergency rooms than those who sought care later.

The reduced hospital use also saved thousands of dollars per patient, a bonus other studies have documented.

“If people aren’t in excruciating pain at 3 a.m., they don’t call 911 and go to the emergency room,” Dr. Meier pointed out.

Yet palliative care remains underused. Even at the well-established U.C.S.F. cancer center, which began offering the service in 2005, only a third of patients in the study had received a palliative care referral.

“We hear this all the time: ‘They’re not ready for palliative care,’ as if it’s a stage people have to accept, as opposed to something that should be a routine part of care,” said Dr. Eric Widera, who practices the specialty at the university.

In fact, the cancer center at U.C.S.F. adopted a euphemistic name for its palliative team: “the symptom management service.”

“We deliberately called it that because of how much ignorance or confusion or even bias there was against the term ‘palliative care,’” said Dr. Michael Rabow, director of the service and senior author of the new study.

Although 40 percent of their palliative care patients can expect to be cured, “there clearly still are both patients and oncologists who have an inappropriate association in their minds,” he said. “They still associate palliative care with giving up.”

To the contrary, palliative care can help patients live fully, regardless of their prognoses. Consider Herman Storey, a 71-year-old San Franciscan, an Air Force veteran, a retired retail buyer and manager, a patient who feels quite well despite a diagnosis of inoperable liver cancer.

His oncologist at the San Francisco V.A. Medical Center — the Department of Veterans Affairs has been a leader in this specialty — referred him to the palliative care service last fall when Mr. Storey said he didn’t intend to pursue chemotherapy.

“They wanted me to reconsider,” Mr. Storey said, “but I don’t want to get sick and tired of being sick and tired.” Chemotherapy for a previous bout of cancer had helped him survive for three years; it had also made him very ill.

Dr. Barbara Drye, medical director of outpatient palliative care at the cancer center, walked Mr. Storey through his options. The suggested chemo might extend his life by several months, she explained. It would also take a toll.

“It can cause not only nausea and diarrhea, but it affects your taste,” she said. “Food tastes like cardboard. Fatigue can markedly decrease the amount of activity someone can do.”

This time, Mr. Storey decided against treatment. A skilled cook, proud of the duck confit dinner he served guests at Christmas, he wants to continue to enjoy cooking and dining out with friends.

Besides, he has plans: In May, he expects to visit Paris for the 11th time, to mark his 72nd birthday.

Dr. Drye, who helped Mr. Storey complete his advance directives, will arrange for home or inpatient hospice care when he needs it. Until then, she sees him monthly.

She has gently suggested that he take his trip a bit earlier; he has declined. “I feel great,” he told me.

So this is also life with palliative care: Mr. Storey and a companion have rented an apartment near the Place des Vosges. A Parisian friend will throw a dinner party for him, as usual. And he’ll eat at that little Alsatian restaurant where they always remember him.

Complete Article HERE!

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This doctor helped dying people end their lives with dignity. Then he was diagnosed with cancer.

By Brooke Jarvis

doctor and cancer

Peter Rasmussen was always able to identify with his patients, particularly in their final moments. But he saw himself especially in a small, businesslike woman with leukemia who came to him in the spring of 2007, not long before he retired. Alice was in her late 50s and lived outside Salem, Oregon, where Rasmussen practiced medical oncology. Like him, she was stubborn and practical and independent. She was not the sort of patient who denied what was happening to her or who scrambled after any possibility of a cure. As Rasmussen saw it, “she had long ago thought about what was important and valuable to her, and she applied that to the fact that she now had acute leukemia.”

From the start, Alice refused chemotherapy, a treatment that would have meant several long hospitalizations with certain suffering, a good chance of death, and a small likelihood of truly helping. As her illness progressed, she also refused hospice care. She wanted to die at home.

Six months after Rasmussen started seeing Alice, he wrote in her chart about his admiration for her and her husband: “Together they are doing a wonderful job not only preparing for her continued worsening and imminent death but also in living a pretty good life in the meantime.” But there were more fevers and bleeding and weakness. In late January, she asked him to write her a prescription for pentobarbital.

Three days later he arrived at her farmhouse with four vials of bitter liquid. Though the law didn’t require it, he liked to bring the drug from the pharmacy himself, right before it was to be used, so that there would be no mistakes.

Over nearly three decades as a physician in Oregon, Rasmussen had developed many strong beliefs about death. The strongest was that patients should have the right to make their own decisions about how to face it. He remembers the scene in Alice’s bedroom as “inspiring, in a sense” — the kind of personal choice that he’d envisioned during the long, lonely years when he’d fought, against the disapproval of nearly everyone he knew and all the way to the U.S. Supreme Court, for the right of terminal patients to decide when and how to die.

By the time he retired, Rasmussen had helped dozens of patients end their lives. But he kept thinking about Alice. Her pragmatism mirrored the image he had of how he would face such a diagnosis. But while he had often conjured that image — had faced it every time he walked a dying patient through a list of inadequate options — he also knew better than to fully believe in it. How could you be sure what you would do before the decisions were real?

“You don’t know the answer to that until you actually face it,” he said later — after his own diagnosis had been made, after he knew that he had cancer and that he would soon die. “You can say you do, but you don’t really know.”

The knowledge hid in the back of Rasmussen’s mind — a flitting worry you don’t look at directly — for a few days before he really comprehended it.

He was on his way home from a meeting of the continuing-education group he had joined after his retirement. One of the group’s members had asked him to let the others know that she had been diagnosed with a glioblastoma — a type of brain tumor whose implacable aggression he knew well. A glioblastoma can cause seizures, memory loss, partial paralysis, even personality changes. You can treat the tumor with surgery, chemotherapy, and radiation, but it will always come back, often in more places. The timeline can be uncertain, but the prognosis never is. The median period of survival after diagnosis is seven months.

As Rasmussen drove away from the meeting, his left hand was draped on the wheel of his Tesla. It felt, as it had for several days, oddly numb, as if he’d been holding a vibrating object for too long. He’d ignored the feeling, chalking it up to spending too much time power-washing pinecones off his cedar-shake roof.

Maybe it was what had happened at the meeting, or the clarity of a wandering mind. All at once he focused on the sensation — on how localized it was, on the fact that it hadn’t gone away — and he knew. Something was wrong. “I’ve either got MS,” he thought, “or I’ve got a brain tumor.”

Instead of driving home he went straight to an urgent-care clinic, where a doctor sent him to the E.R., where another doctor gave him an MRI, which showed a tumor. It was, he learned later, a glioblastoma about an inch in diameter. Barring an accident, it would be the thing that killed him, sometime in the suddenly too near future.

Eight days after his MRI, Rasmussen went to the hospital to have part of his skull cut away and his tumor sliced out. He had considered whether having surgery violated his usual advice about not wasting one’s final months seeking painful and unlikely cures, but because his tumor was localized and fairly accessible, he and his surgeon decided that the odds were good enough to try.

The surgery was a success — though Rasmussen lost the use of his left arm, the entire visible tumor was removed, and he was able to leave the next day. Of course, success was only a slower form of failure: He was still going to die. He never let himself, or anyone around him, forget that his reprieve was temporary. “It’s not if I pass away,” he corrected his lawyer, his accountant, his friends. “It’s when I die.”

Before he retired, Rasmussen had often tried to help his patients and their families think of the process of dying as an opportunity, a chance for clarity and forgiveness, for thoughtful, meaningful goodbyes. He hoped to hold on to that belief for himself. When he pictured a good death, the image was simple: calm and peace, without much physical suffering, and his family with him in the house where he’d lived for 18 years with Cindy, his wife; where the kids had grown up; where the windows looked out on his bird feeders and his flowers.

It wasn’t time yet. Five months after the surgery, he stopped chemo and radiation. He began to feel better, stronger, and was even able to use his left hand a little. Still, every time he had a headache or nausea he wondered whether the tumor was growing back. But whenever he started to feel sorry for himself, he’d administer a stern mental shake: “We all die,” he’d tell himself. “It’s never fair to anybody. So buck up.”

Privately, he had no idea whether or not he’d take advantage of Oregon’s assisted suicide law. He consulted a list that he’d kept of his Death With Dignity patients. At first most had been urgent cases: people with all kinds of terminal diseases, who were suffering intensely and wanted to take the drug right away. As time passed, people began coming to him sooner after their diagnoses, before they knew how their diseases would develop. Some only asked questions, and others wanted to have the pentobarbital handy, a just-in-case comfort that made them feel more in control. The majority of his patients never took the medication.

Every death was different, though most had details in common: reminiscing in advance, goodbyes filled with love, family members saying that it was OK to stop struggling. There was the death with the Harley-Davidsons: He’d pulled up to the house and there were motorcycles everywhere, people in leather drinking beer on the lawn, just the party his patient wanted.

Of course, not everyone wanted a party, and he respected that too. Often there were only a few family members, and sometimes it was just him and the patient, alone together at the last. Only once did someone ask to die completely alone, in quiet privacy behind the closed door of a bedroom.

He remembered a woman whose mastectomy had not stopped her breast cancer from metastasizing to her lungs. Her huge family came in for the weekend. They had a picnic on Saturday, went to church on Sunday, and then all the kids and grandkids filed through her bedroom to say goodbye. He waited outside the door until they were done and then he brought her a dose of pentobarbital. She drank it and died. That one stuck with him: “It was about as ideal a death as I possibly could have imagined.”

In July of last year, Rasmussen went in for a new MRI. The scan showed the tumor, the same size and back in the same place it had been the year before. He consulted with his surgeon, who told him that the tumor was once again a good candidate for removal. Rasmussen would most likely lose the use of his left arm altogether, but if all went very well, he would have a one-in-three chance of living to the second anniversary of his diagnosis.

“I’ll leave tomorrow for the trip,” he told Cindy after meeting with the surgeon — meaning a cross-country road trip that he’d been talking about. Cindy was stunned. She hadn’t thought he’d actually go. But he was adamant, and then he was gone.

He drove east through Idaho, Montana, South Dakota, along long, open stretches of quiet road. He brought recorded lectures to keep him company: one about St. Francis, a series on the Higgs boson, and a particularly interesting lecture about gnosticism.

As he drove, he tried to visualize what his life would be like if he underwent surgery or stopped treatment altogether. He imagined losing more of the use of his left side and eventually ending up in hospice, bedbound. That part didn’t bother him so much. He knew it was coming no matter what. But he didn’t like thinking about stopping treatment, not yet. It was too passive, too final. It just made him too sad.

Somewhere around the ninth day of his trip, he had a thought that excited him. “The task of learning to be a hemiparetic person,” of living with paralysis on his left side, could be an adventure, another learning experience. “To take on a challenge is always satisfying,” he explained later. Relief washed over him. He had made a decision.

He wasn’t planning to have the surgery right away, but an hour after arriving home he had a seizure. Four days later he was back in the O.R., and surgeons were once again scooping a tumor from his brain. He woke to find himself paralyzed not just in his arm, but throughout the left side of his body. For days he was noticeably quiet. After three days he moved to a nursing-care facility. The first morning there, he called Cindy to tell her that he’d been very sad the night before. “Did you cry?” she asked.

“No, I didn’t cry,” he replied. “But I was mourning the loss of my independence.”

On Oct. 1, he was admitted to the hospital for a new MRI. The results showed that his tumor had not only grown back but expanded into the middle of his brain. “I want to go home,” he said.

Cindy set up a hospital bed in the living room looking out over his gardens. His stepchildren arrived from New York and Seattle. For four nights Cindy and the kids stayed by his bed, each night thinking it would be the last. Instead, he grew stronger for a time — a month that Cindy calls “one of the most meaningful experiences I’ve ever had and probably will ever have.” He visited with friends and family, watched a slide show of old pictures, listened as music therapists played his favorite songs on the ukulele.

Rasmussen had already started the paperwork for Death With Dignity, but he didn’t want to add the final touch, his own signature. Near the end of October, he was speaking only a few labored words at a time. One day he asked Cindy to help him stand so he could get up to go to the bathroom, something he hadn’t done in weeks. He was so weak and frail that Cindy told him it was impossible. She says she saw the realization happen then: “This is it.”

On Oct. 29, Rasmussen signed the paperwork and his siblings flew in from Wisconsin, Illinois, and North Carolina. He planned to take the drug the next week, after what Cindy calls “a memorial service while he was still alive.” Sixteen people gathered around Rasmussen; one by one they told him what he had meant to them and what they would remember about him.

He was alert but not talking much on the morning of Nov. 3. His family intertwined their arms in a circle around him and put piano music on the stereo. He raised the cup of secobarbital mixed with juice — papaya, orange, and mango, his favorite — and drank it down. His eyes closed. Cindy, sobbing, realized how similar the scene was to what he used to describe when he came home from someone else’s death. “It was awful,” she says. “But at the same time, I was glad that he was able to end his life on his terms.”

Half an hour later, he quietly stopped breathing.

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Dying docs opt for less aggressive end-of-life care

By Sabriya Rice

Doctors facing death may be less likely to seek surgery or visit the intensive-care unit during the last six months of their lives when compared to non-clinicians. They are also less likely to ultimately die in a hospital, according to studies posted Tuesday in JAMA that looked at use of end-of-life services.

when doctors grieve

“Actual experience with hospital deaths may differentially motivate physicians to avoid them,” the authors of one report wrote. Physicians may also opt for less rigorous care, because of their “knowledge of its burdens and futility,” the researchers added.

Policy surrounding end-of-life care has been highly politicized in recent years. Physicians have argued for Medicare to support conversations about the pros and cons of end-of-life treatments. Opponents on the other hand feared this could result in so-called “death panels,” and care decisions based on financial concerns.

Last fall, the CMS moved forward with plans to create distinct Medicare billing codes and rates for end-of-life care planning. The policy was welcomed by physicians, who said it would allow them more opportunity to have conversations about end of life as part of yearly checkups.

While medical advancements have helped people to live longer, they have also led to increased demand for end-of-life care and associated costs. By 2050, the population of people age 65 and over is projected to be 83.7 million, almost double that of 2012, in part due to aging baby boomers. The population of people living to be age 80 and older is projected to reach 30.9 million, according to the U.S. Census Bureau (PDF).

Also, hospice usage among Medicare fee-for-service patients has been growing. Rates nearly doubled from 26% in 2002 to 47% in 2012, according to a 2015 report from the Medicare Payment Advisory Commission (PDF). Spending on hospice care also rose from just under $1 billion to $3.4 billion during that time period.

The Jan. 19 issue of JAMA delves into a number of studies, commentary and viewpoints on death and dying in this current environment. In one commentary, surgeon Dr. Atul Gawande of Boston’s Brigham and Women’s Hospital calls the picture of care at the end of life “disturbing.” Holding palliative care consultation and end-of-life discussions as a last resort is “incorrect and harmful,” he wrote.

End-of-life care must consider both how much treatment is needed and balance that with the quality of life it provides to the patient. Given their knowledge of healthcare, two studies specifically aimed to examine the intensity of treatments chosen by doctors nearing death, compared with members of the general population.

One analysis looks at records of Medicare beneficiaries age 66 and older who died between 2004 and 2011 in Massachusetts, Michigan, Utah and Vermont. Death records were used to obtain education and occupation status so researchers could differentiate physicians’ end-of-life choices from those of the general population.

The study found that in the last six months of life, on average about 25% of a total 2,376 physicians who died had surgery and 26% were admitted to the ICU. That’s compared with just over 27% of the general population (159,255) of patients. On average, 32% of the general population died in a hospital; less than 28% of physicians did. The study was conducted by researchers from Brigham and Women’s Hospital; the Mayo Clinic in Rochester, Minn.; and Weill Cornell Medicine, New York.

The other analysis used U.S. Census Bureau mortality survey data and the National Death Index to look at individuals between ages 30 and 98 who died between 1979 and 2011. Physicians and health professionals such as dentists, nurses and pharmacists were less likely to die in a hospital compared with the general population.

The authors of that report were from the New York University School of Medicine, the U.S. Census Bureau and the National Cancer Institute.

Both studies say familiarity with healthcare and greater financial resources may be associated with lower likelihood of aggressive end-of-life care. Elderly clinicians may have the financial means to pay for other options, such as palliative care or having a skilled nurse at home, the authors say.

Complete Article HERE!

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Doctors need to learn about dying, too

By Susan Svrluga

Doctors will finally be reimbursed for talking about death with their terminally ill patients, but, Michael Nisco argues, very few of them know how to do that.  Nisco, the hospice national medical director for Amedisys Home Health and Hospice Care, has taught at Stanford and Harvard medical schools. He founded the physician specialty training program in palliative care at the University of California San Francisco Medical School.

He writes that medical schools must do a better job of preparing physicians to help patients even when they can no longer heal them.

mortality

Dying Patients Deserve Physicians Educated in End-Of-Life Care

By Michael Nisco, MD

Starting this year, Medicare will, for the first time ever, reimburse physicians for having end-of-life discussions with terminally ill patients.

In the ideal scenarios, doctors ask patients to identify how and where they want to spend those final days, and then recommend the best options.

Question is, will physicians, as a result, be motivated to initiate more of these crucial conversations? Will patients? And will this long-overdue reform ultimately improve, both clinically and economically, how well the U.S. health care system delivers end-of-life care?

Nobody knows for sure. But this much is certain: Many physicians have received no training along these lines. Few are educated in how to carry on this kind of talk with patients in the first place, much less in shepherding patients compassionately toward death.death-cab-for-cutie-transatlanticism-reissue

In 1999, only 26 percent of residency programs in the United States offered a course on care at the end of life as part of the curriculum, the Journal of the American Medical Association reported. Indeed, of 122 medical schools researchers surveyed more recently, only eight had mandatory coursework in end-of-life care.

Physicians all too often skip having an end-of-life discussion, or at least delay it as long as possible, even in the face of a major health crisis. Physicians are rarely prepared to conduct such momentous conversations with patients, least of all about anything as sensitive as advance care directives. We typically think and act short-term rather than looking ahead. But it’s more than that: Such conversations guarantee deep discomfort.

Acknowledging the approach of death means delivering a poor prognosis — and admitting to ourselves that we’re about to fail our patients forever. Doctors are hardly immune to living in denial. We can be unduly optimistic about how long even the sickest of the sick are going to stay alive.

After all, nobody wants to look death in the eye.

Code DeathAnd in bypassing this opportunity and doing what we believe to be right, we’re actually committing a wrong, bringing serious consequences. Patients pay the price. Those who need to be alerted to and informed about end-of-life care may wind up ill-advised and even ignorant about the choices available and what they might mean.

Terminal patients should have the opportunity to enter hospice care sooner than most do to take advantage of its clinical, emotional and spiritual benefits. They should also be granted the right to die at home if they so choose rather than in a hospital or a nursing home.

Pressure for these discussions to be imperative rather than optional is growing, and fast. The decision from the Centers for Medicare & Medicaid Services to compensate doctors for having these talks is only the latest breakthrough on this front.

In 2014, the Institute of Medicine came out with an influential report, “Dying in America: Improving Quality and Honoring Individual Preferences near the End of Life,” that, among other calls to action, urged Medicare to approve such reimbursements for these counseling sessions. The American Medical Association soon urged the same. Massachusetts even became the first state to pass a law requiring doctors to discuss with terminally ill patients how they want to be cared for at the end of life.

Of course health care professionals in current practice should adopt the proper protocols, too. Accordingly, Amedisys Home Health and Hospice Care has undertaken its own national educational initiative. Over the last year, more than 3,000 of our employees, across our 80 hospice centers, have come together to watch the PBS documentary “Being Mortal,” based on the book by Atul Gawande, and discuss how to apply its lessons to caring for our patients every day.

We’ve secured Continuing Medical Education accreditation so we can credit every physician, nurse practitioner and physician assistant who completes an online course featuring the film. We’re also screening the film for physicians, nurses, social workers, home health workers and the general public at hundreds of locations across the country.death-poems-death-poetry-dark-poems-dark-poetry

The broader solution here, at once simple and complex, is that more medical schools should develop curricula about performing end-of-life care in general and conducting discussions about it in particular.

We have to change how people die in this country – and, more specifically, teach the next generation of physicians how best to care for the dying. Here’s a prescription to get us started:

  • Care at the end of life should be taught as an essential clinical skill throughout the continuum of medical education.
  • Medical students should be exposed in all stages of training to dying patients and multidisciplinary teams who can instruct in a humane model of palliative care.
  • Medical schools must train and hire more educators to demonstrate state-of-the-art palliative care for medical students, residents, fellows, medical school faculty, and physicians in practice.
  • The following major goals should be the focus: establishing suitable communication skills; acquiring essential technical knowledge for treating symptoms and relieving pain; and learning to address the psychosocial, cultural and spiritual needs of patients.

Unless action is taken, we may see more physicians telling stories like this one, from Charles von Gunten’s “Why I Do What I do”:

The young man was ‘end stage’ and we could do nothing for him. He was short of breath and unable to talk and looked terrified. I had no idea what to do. So I patted him on the shoulder, said something inane, and left.  He died hours later. The memory haunts me. I was ignorant and failed to care for him properly.

These improvements are already desperately overdue. Palliative care is the responsibility of all physicians, yet only an estimated 6,500 physicians are certified in hospice and palliative care. Only if we improve our overall approach will our patients and families ever truly have a chance to complete their life’s journey with honor and dignity.

Complete Article HERE!

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How Uganda Came To Earn High Marks For Quality Of Death

By Rae Ellen Bichell

african-palliative-care-association
A elderly patient with chronic debilitating back pain receives a bottle of liquid morphine during a home visit from a representative of Hospice Africa Uganda.

Food coloring, water, a preservative and a pound of morphine powder. These are the ingredients in Dr. Anne Merriman’s recipe for liquid morphine.

“It’s easier than making a cake,” says Merriman, a British palliative care specialist who founded Hospice Africa in Uganda in 1993 and helped design the formula that hospice workers in Uganda have used for 22 years to craft liquid morphine. The lightest dose, dyed green to indicate the strength and to make sure people don’t confuse it with water, costs about $2 per bottle to make. Stronger doses are dyed pink and blue. A 16-ounce bottle is about a week’s supply for most patients.Dr. Anne Merriman

Those cheap bottles of green, pink and blue liquid morphine have changed the way people die in Uganda — and are a key reason why Uganda has the best quality of death among low-income countries, according to global Quality of Death Index published by the Economist Intelligence Unit.

Back in the 1990s, two of the biggest barriers to good death in Uganda were simple: not enough doctors and not enough morphine. Largely through Merriman’s drive, Hospice Africa Uganda developed professional education in palliative care that would spread the responsibility to nurses, rather than relying on doctors. They helped make it mandatory for medical students in Uganda to study pain management – before Germany did. And Hospice Africa Uganda made liquid morphine.

“I had been one of the doctors who had said to people, ‘Sorry, there is no more we can do. You have to go home,'” says Merriman, of the time she spent working with cancer patients in Singapore starting in the 1960s. There, she says, “I found that patients with cancer were getting every treatment possible with chemotherapy, and then when it didn’t work they were sent home and they were dying in agony.”

So she sat down with a couple pharmacists from the National University Hospital and came up with a formula to make a liquid from pure morphine powder.

An HIV-positive woman
An HIV-positive woman, living alone in a one-room house, speaks with a visiting doctor.

Merriman would eventually be invited to Kenya to set up a hospice care program in Nairobi before founding her own organization in 1993, based in Uganda. At that time, palliative care in Africa only existed in Zimbabwe and South Africa, and the services, she says, were “started out by whites for whites.” Medication was prohibitively expensive for most patients. “The strongest they had there was codeine — if you had money. But if you didn’t have money, you only had aspirin and sometimes nothing at all,” says Merriman.

Today, the organization’s three hospice centers serve some 2,100 outpatients. “It’s not always the pain that’s their greatest worry,” she says. “It’s often ‘What’s going to happen to my children when I die?’ It may be spiritual problems, it may be cultural — things they have to carry out before they die. We try to help with all those kinds of things.”

Relieving pain is step one — and it has many benefits. Patients eat better, sleep better and live higher quality lives, even in their last days, says Merriman.

Cost was one obstacle to pain management that Merriman had to address. Another, which persists in many countries, was a deep-rooted fear of opioid painkillers.

Though morphine is considered the gold standard in palliative care for pain management, in many parts of the world fear of opioid addiction and misuse is so rampant it has a name: opiophobia.

Merriman ran up against opiophobia in Singapore and Uganda, where she says, people thought she was providing morphine so that patients could kill themselves. “And morphine can kill,” she says. But with the right regulations in place, and the right explanation to the patient and their relatives, she says, “it’s very safe.”

For over a decade, the Ugandan government has provided morphine free to the patients of prescribers who are members of a special registry, all trained through Hospice Africa Uganda.

“You’ve got to be careful, everything has to be signed for and we have to follow the regulations,” she says. “But for the last three years, we’ve been making morphine for the whole country.”

Merriman says of the 24,000 patients in total that they have prescribed oral morphine to, “we’ve had no addiction, no diversions. And the patients keep the bottle at home.”

In Uganda, she had to work hard to surmount the fear of opioids. For example, Hospice Africa Uganda worked with narcotics police, teaching them what morphine is and that it’s a legal medication.

“They need to understand that patients can take morphine and that they are not addicted, that it is handed to patients after careful assessment, and that it is a safe medication,” says Dr. Eddie Mwebesa, clinical director at Hospice Africa Uganda. Without police cooperation, he says, “there will be a lot of trouble with patients having their morphine in the home” and in transporting the drug between hospices or patient homes.

Clinicians prescribe the morphine and instruct patients to sip a dose from a marked cup. For adults, it’s usually about a teaspoon every 4 hours. Merriman says hospice workers frequently have to warn people about morphine — not because of the risk of addiction but to explain that it will not wipe out their illness. She says they feel so good after it, they often feel normal again. “They think we’ve cured them,” she says.

Even with the innovations in Uganda, there are still challenges. The organization estimates that only 10 percent of Ugandan patients in need of palliative care can access it.

“The biggest challenge we have right now is the sheer number of patients who need palliative care,” says Mwebesa — he puts the number at 250,000 to 300,000. But there is about one doctor for every 20,000 Ugandans, he says.

A palliative care physician
A palliative care physician visits an HIV-positive patient who lost her family to the AIDS epidemic. She’s resting on a mat outside her home.

Mwebesa says palliative care can cost about $25 each week for one patient. “It doesn’t sound like a lot,” he says, “But actually most people can’t afford it.” Only 2 percent of Ugandans have health insurance, so many families have to pay out-of-pocket to care for sick relatives.

Even though Uganda is far from perfect, it remains in many respects a model country for its neighbors. “We had the minister of Swaziland visit Uganda to see how Uganda reconstitutes oral morphine and then when we went back, they started doing the same,” says Dr. Emmanuel Luyirika, executive director of the African Palliative Care Association. He says the same happened with Rwanda and Malawi.

Merriman is now turning her attention to French-speaking countries in Africa. She says some countries in the region remind her a lot of Uganda back in the ’90s. “They’ve got a fear of morphine. Doctors don’t want to prescribe it because they think if they prescribe it, they’ll be accused of being addicts themselves,” she says. World Bank data shows the region has the world’s highest maternal mortality and lowest national health budgets. And people there largely pay for health care out-of-pocket.

“If you haven’t got money,” says Merriman, “you can’t even get an aspirin.” At age 80, she’s still determined to see that the dying don’t have to face such dilemmas when they seek relief from pain.

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When are you officially dead? Well, that may depend on which hospital is making the call

By Sarah Kaplan

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The narrow, inscrutable zone between undeniably still here and unequivocally gone includes a range of states that look like life but may not be: a beating heart, a functioning digestive system, even moving fingers and toes. Death is less a moment then a process, a gradual drift out of existence as essential functions switch off, be it rapidly or one by one.

It was exactly midnight when Colleen Burns was wheeled into the operating room at St. Joseph’s Hospital Health Center in Syracuse, N.Y. She had been deep in a coma for several days after overdosing on a toxic cocktail of drugs. Scans of electrical activity in her brain were poor, and oxygen didn’t seem to be flowing. Burns was brain dead, her family was told; if they wanted to donate her organs, now was the time to do it.

But there, under the bright lights of the prep room in the OR, Burns opened her eyes. The 41-year-old wasn’t brain dead. She wasn’t even unconscious anymore. And doctors had been minutes away from cutting into her to remove her organs.

This is the nightmare scenario, the one that sends doctors and neurologists into cold sweats. It’s the reason that, in 2010, the American Academy of Neurology issued new guidelines for hospitals for determining brain death – the condition that legally demarcates life from whatever lies beyond. Those standards, according to Yale University neurologist David Greer, who worked on them, are meant to ensure that no patient is declared dead unless they really are beyond all hope of recovery.

“This is truly one of those matters of life and death, and we want to make sure this is done right every single time,” he told NPR.

But five years later, according to a study led by Greer that was published in the journal JAMA Neurology Monday, not all hospitals have adopted the guidelines.

Of the nearly 500 hospitals Greer and his colleagues surveyed over a three year period, most facilities did not require that someone with expertise in neurology or neurosurgery be present to determine brain death. At more than half of hospitals, the person who makes the call doesn’t even have to be the patient’s attending physician. A majority also didn’t require doctors to test for hypotension (abnormally low blood pressure) or hypothermia, both of which can suppress brain function which could mimic the appearance of brain death.

There were large improvements in standardization of brain death assessments across hospitals since the 2010 criteria were published. The survey also looked at standards, not practices.

But the lingering lapses are still worrying, Greer told NPR.

“There are very few things in medicine that should be black and white, but this is certainly one of them,” he said. “There really are no excuses at this point for hospitals not to be able to do this 100 percent of the time.”

Burns’s near-disastrous declaration of death happened in 2009, before the new guidelines were released, though a U.S. Department of Health and Human Services report on the incident found that St. Joseph’s had failed to meet previous standards for assessing death. Hospital staff missed several signs that Burns’s brain was still functioning the night she was due for organ donation surgery: her nostrils flared, her lips and tongue moved, she was breathing “above the ventilator” (meaning, taking breaths of her own accord). And when a nurse performed a reflex test, scraping a finger along the bottom of Burns’s foot, the woman’s toes curled inward, according to the Syracuse Post-Standard.

Doctors failed to order repeat CT scans and inexplicably and inaccurately said that she suffered from cardiac arrest when she hadn’t. Crucially, they also failed to measure whether the drugs she had taken still lingered in her system, preventing her from exhibiting even the most primitive reflexes expected of someone with brain activity.

This is a widespread problem, Greer’s report indicates: only about 32 percent of hospitals surveyed required drug tests to rule out toxic levels that can mimic the loss of primitive reflexes associated with brain death.

As soon as Burns opened her eyes, she was rushed back into the ICU and her doctors resumed treatment. She ultimately recovered from her overdose and was discharged two weeks later. But 16 months after the near-miss in the OR Burns committed suicide, her mother told the Post-Standard.

Burns’s mother, Lucille Kuss, said that depression, not what happened at the hospital, is what drove Burns to her death.

“She was so depressed that it really didn’t make any difference to her,” Kuss said of the incident.

Cases like Burns’s are increasingly rare, but they are emblematic of an anxiety at the root of all discussions about brain death. If death is a process, at what point in the process is the person no longer alive?

For most of history, this question was mostly moot. In the Victorian era, for example, doctors couldn’t keep blood pumping through a permanently unresponsive person’s body, even if they wanted to, and a person who lost brain function would surely quit breathing shortly after. Determining the exact point of death was less a medical necessity than a philosophical diversion: In the early 1900s, Boston doctor Duncan MacDougall recruited a number of terminally ill patients to lie down on a massive scale during their final moments. By measuring fluctuations in their weight at the moment they died, MacDougall claimed, he could determine the mass of the soul.

The advent of organ donation procedures in the 1960s changed that. That period of collapse as functions failed became not only a tragic inevitability, but a vital window when organs could be taken from a dead body and used to keep another alive. Yet defining that window is medically and ethically complicated. Open it too early, as Burns’s doctors almost did, and you risk sacrificing a patient who might have survived. Too late, and the organs will deteriorate along with the life they once sustained.

This is how we arrived at a definition of death as brain death, the complete and irreversible loss of brain function, including in the brain stem (which controls the heart and lungs). It comes largely from a 1968 definition written for the The Journal of the American Medical Association by an ad hoc Harvard Medical School committee, and then affirmed by a blue ribbon medical commission just over a decade later. A person can also be declared dead if they suffer an irreversible cessation of respiratory and circulatory functions – in other words, their heart and lungs permanently stop.

Some critics of brain death as a barometer for organ donation worry that it might encourage doctors to give up on their patients too soon.

Of course, the extraction of organs from a failing body is not the only reason to come up with a legal definition of death. It also helps hospitals to determine when and how to end life-saving interventions and remove a patient from life support.

The logic behind marking brain death as the end of life is that existence without a brain isn’t living.

“The brain is the person, the evolved person, not the machine person,” Cornell University neurologist Fred Plum said at a symposium on comas and death in 2000, according to the New Yorker. “. . . We are not one living cell. We are the evolution of a very large group of systems into the awareness of self and the environment.”

The brain is the person, the evolved person, not the machine person

But not everyone agrees. Cultural and legal definitions of life and death vary – in an interview with NPR, Georgetown University medical ethics professor Robert Veatch called defining death “the abortion question at the other end of life.”

Right now, the family of Jahi McMath, a California teenager who was declared brain dead two years ago but has been kept on life support, is suing to have her death certificate invalidated according to the Associated Press. The McMaths are devout Christians, their lawyer wrote in a brief, who believe that “as long as the heart is beating, Jahi is alive.”

McMath is currently on a ventilator in New Jersey, where state law allows hospitals to take a family’s religion into consideration when making decisions about end-of-life procedures.

Yet despite the legal, medical and moral complexities in determining brain death, there is no federally mandated procedure for doing so, according to the New York Times. There are only the guidelines issued by neurologists, and how hospitals choose to apply them.

That they do so inconsistently only exacerbates the anxieties people have about death and organ donation, Leslie Whetstine, a bioethicist at Walsh University in Ohio, told NPR.

“If one hospital is using a testing method that’s different from another hospital,” she said, “people might wonder: ‘Are they really dead?’”

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Prison hospice program blesses both the living and dying

BY PATRICIA GANNON

Hospice of Acadiana, whose volunteers include, from left, Martie Beard, Lyle Ann Hernandez, Ann Wallace, Lewis Bernard and Charlene Miller, annually visit state prisons to support inmates administering end-of-life caregiving to fellow prisoners.
Hospice of Acadiana, whose volunteers include, from left, Martie Beard, Lyle Ann Hernandez, Ann Wallace, Lewis Bernard and Charlene Miller, annually visit state prisons to support inmates administering end-of-life caregiving to fellow prisoners.

According to Luke 23:42, a thief crucified alongside Jesus said to him, “Remember me when you come into your kingdom” to which Jesus replied, “Amen, I say to you today you will be with me in Paradise.”

Hospice of Acadiana takes the verse to heart and annually sends volunteers to support inmates administering end-of-life caregiving to fellow prisoners.

Volunteers bring bags of supplies to their prison hospice counterparts, inmates taking on death watches in addition to other prison duties.

The bags are handmade by a Lafayette woman and contain a blanket, candy, snacks, socks and toiletries, all supplied by the volunteers themselves or by donation. The blanket doubles as a prayer shawl and comes with the blessing, “Know that even in the middle of the darkest night you are not alone.”

“We do continuing education, but we leave with more than we bring,” said Ann Wallace, Hospice of Acadiana volunteer director.

The volunteers mostly talk about hope.

“We try to talk about topics to help them be better volunteers,” she said. “It’s a very special program and they (inmates) have to apply. It’s an esteemed position.”

While Louisiana State Penitentiary at Angola has the first and oldest prison hospice program in the state, the volunteer group also serves Dixon Correctional Institute in Jackson and Elayn Hunt Correctional Center and Louisiana Correctional Institute for Women, both in St. Gabriel.

There also is a hospice program at the B.B. “Sixty” Rayburn Correctional Center in Washington Parish, near Angie.

Started in 1997 by directive of Warden Burl Cain, who recently announced his retirement, Angola trained 40 inmates in issues that affect end of life and how to take care of fellow prisoners.

Hospice of Acadiana mentors from the outside.

“We talk about the four most important things,” said Lewis Bernard, a volunteer for 15 years. “I’m sorry, I love you, thank you, and I forgive you. We start with that.”

Volunteers from Hospice of Acadiana assist inmates in practicing basic care, helping the terminally ill to die comfortably and making sure inmates don’t die alone. They offer advice in all the aspects of social, emotional and physical care, including bereavement, spirituality and reconciliation with family.

Anywhere from 10 to 20 volunteers are mustered for the yearly visit in December.

“We put an email out that we’re going to the prison and ask who wants to come,” said Wallace.

“No one really knows until you experience it,” she said. “My Bible study group didn’t even understand.”

Whether they’re serving 10 to 20 years or life, the reality is terminally ill prisoners are not transferred out to die, and if family doesn’t claim them, they are buried on site in coffins made by prisoners.

“I remember one inmate saying, ‘I know I’m like a broken car, they’re going to fix me and I’ll run better,” said Bernard. “At St. Gabriel and Dixon, there’s hope.”

He said that’s not the case at Angola. “They (prison hospice volunteers) see their work as more of a ministry,” said Bernard, “You can’t be a wimp and do that work. They become the nurses. At the moment they die, nothing’s left but their relationship with God. They’ve been stripped of everything else.”

“It’s the way all hospice should work,” said Jamie Boudreaux, executive director of the Louisiana and Mississippi Palliative Care Association. “They are caring for their fellow inmates in a most remarkable way. For 24 hours they don’t leave their side. It’s one of the most incredible programs in the country. We have correctional officers who come to Angola to see it.”

Prisons in Louisiana have a particularly bloody aspect to their history, said Boudreaux.

“Angola is still a maximum security facility,” he said, “but there is a new level of cooperation between inmates and guards.”

According to Boudreaux, prisoners themselves notice a difference, a newfound dignity.

“It truly is the most transformative story I have seen in my lifetime,” he said.

The Angola hospice program is documented in “Serving Life,” a film narrated and produced by Academy Award-winner Forest Whitaker.

The film takes viewers inside Angola, where the average sentence is more than 90 years. With prison sentences so long, 85 percent of the inmates will never live on the outside again.

Charlene Miller, a 23-year volunteer, explained that before hospice, prisoners died in their cells or the infirmary.

“It’s something to see those big, burly men soothe the dying and pray with them,” she said. “It makes me feel good. I love it. It’s a privilege to be in on the last moments of their lives.”

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