It might seem like the last place anyone would choose to be. But for those like Michelle Charles, GSS ’15, with a background in palliative care, it’s exactly where she wants to be. Charles graduated from the Palliative Care Fellowship program at Fordham’s Graduate School of Social Service (GSS), one of a handful of programs of its kind nationwide. Today she is an oncology social worker at Memorial Sloan Kettering.

Charles’ upbeat demeanor belies the gravity of her role. Like so many in palliative care, a personal experience inspired her to get into the field; her grandfather died at home when she was applying to graduate schools.

“We dropped everything and we moved into his house, me and my parents, my sister. He was on hospice care and we were all there to take care of him,” she said. “That was kind of the experience that really propelled me to apply to grad school.”

She said when she heard there was a palliative care fellowship at Fordham, “it just clicked.”

“There are certain people who are lucky enough to not be facing this right now, but we all face this; there’s suffering for all of us in life, there’s death at some point for ourselves and for people that we love,” she said. “For me, getting to come here every day, I get to be really intimate with that and it takes away a lot of my fear.”

 What Is Palliative Care?

The World Health Organization today defines palliative care as a health care “approach that improves the quality of life of patients and their families facing problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.”

The Palliative Care Fellowship

The Palliative Care Fellowship began at GSS in 2013. Acceptance as a Palliative Care Fellow is highly competitive and intended for students who are certain they want to work in palliative care. There are two required courses: One is Palliative Social Work, which deals with basic practices and principles, policy issues, and clinical issues. The second is Grief, Loss, and Bereavement. Students also have a dedicated field seminar led by an experienced palliative social worker. Cathy Berkman, Ph.D., associate professor of social work, is the director of the Palliative Care Fellowship and has been in the field since the mid-1990s. Berkman is a constant presence throughout the program for fellows, meeting them for lunch once a month, advising them during the fellowship year, and assisting with their careers after graduation.

Berkman recalled the early days at St. Vincent’s Hospital in Greenwich Village, when she worked on several large studies as a co-principal investigator with the hospital’s chief of geriatrics before securing a grant to establish an interdisciplinary palliative care service at the hospital.

She said that a large multi-site study published in the Journal of the American Medical Association in 1995 presented a grim picture of the care given to terminally ill patients in hospitals; their wishes were largely unknown by their physicians. In the years that followed, as the medical field refined the practice of palliative care, social workers staked out their unique role, bringing their expertise in providing biopsychosocial and spiritual support to the table.

By 2010, a new study published in the New England Journal of Medicine showed that cancer patients who received palliative care at the same time as their usual cancer treatment lived several months longer and suffered less from depression. Today there are more than 1,300 programs registered with the National Palliative Care Registry.

“Palliative care does not compete with the curative care that’s being attempted, it adds to it to enhance people’s lives,” said Berkman.

With social workers filling the role of intermediary between doctors, nurses, social workers, chaplains, and family members, she said, patients now have a continuous presence throughout their illness, a professional who can provide support and act as an advocate to help them see their wishes carried out.

From Fighting to Living 

Sophie Rivera is currently a palliative care fellow doing her field placement at Montefiore Medical Center’s Wakefield Campus in the Bronx. Her supervisor there is Kenneth Meeker, GSS ‘12. On a recent afternoon, the two came together for an interview in the hospital’s Caregiver Support Center. The room is bathed in natural light, the sound of a small waterfall wall splashes in the distance, and boxes of tissues never sit more than an arm’s length away. 

“I will tell you every family that we work with says that their loved one is a fighter because that’s part of their hope,” said Rivera. “And this is a touchy thing because we have to talk to the patient about what they would want and sometimes it’s not congruent with what the family wants.”

Rivera speaks from personal experience. Her mother died of cancer at Montefiore’s Weiler campus, also in the Bronx. She said that sometimes it’s helpful for families to let patients know it’s OK for them to choose to forego painful treatment.

“At the beginning, my mother was, ‘Let’s try for everything,’ but then I noticed in her that she looked tired; the chemo was just too much,” she said. “There was a point I had to have the talk and say ‘It looks to me like you’re just trying your best to maintain yourself because of me.’ I had to alleviate her of that because I didn’t want to feel that guilt either.”

She said she had a remarkable palliative care experience at the hospital that brought her full circle back to Montefiore, but this time as a practitioner.

Shifting the dialogue from one of a battle to one of acceptance requires a great deal of delicacy and trust, said Meeker. It falls to the palliative care social worker to ascertain what the patient wants and communicate to them what is possible.

“I teach my students from the beginning, you’ve got to connect with the families and the patients,” he said. “If you don’t connect, there’s nowhere to go.”

He said building a rapport can start with sports, music, or anything that’s not related to the crisis at hand.

Discussing the Inevitable

Unless something acutely traumatic happens, no one should ever have to say that didn’t know that a loved one was about to die, unless they choose not to be told, said Berkman. Patients and their families should be able to prepare for the end by facing the truth pragmatically, and that preparation should never wait until the opportunity has passed.

“There are several things you may want to be able to say to family and friends before you die; you want to say ‘I love you”, ‘I forgive you’, or ‘I’m sorry’,’” she said. “Those are things that may have accumulated over a lifetime. You need time to say all those things and by not knowing what your prognosis is, you’re deprived of the ability to have those conversations with people that you care about.”

All too often discussions about the realities of disease advancement get usurped by a battlefield culture around terminal illnesses and the rhetoric that goes with it.

“‘She lost her battle against cancer’ is terrible language and many people in this field really try to fight against that,” said Berkman. “It doesn’t matter how strong your will is and how much positive thinking you do, these are cancer cells or this is heart disease. Being stoic or thinking about unicorns and rainbows is not going to chase it away.”

At some point, palliative care social workers will facilitate a conversation with the patient and their families about the future. For some, that future could mean stopping disease-directed therapies and beginning to shift toward comfort care. For others, it could mean even more aggressive treatment that brings hope of a cure, but also pain and other distressing symptoms. The palliative care social worker must have a holistic understanding of the patient and family, including the medical and psychosocial issues, and then synthesize options and challenges so that the patient can make an informed decision about their future, said Berkman.

Palliative care should be offered from the moment of diagnosis of any serious illness so that patients have time to grapple with the entire arc of the disease—not just the late stages. Ideally, doctors would continue to deliver curative treatment as long as this is effective and desired by the patient, while the palliative care team helps the patient address pain and other physical symptoms, she said, as well as anxiety and depression, their spiritual needs, and social and financial issues that could affect their decisions. But that’s not always the case.

“Unfortunately, the specialist treating the illness with a curative goal in mind often does not refer patients to palliative care,” she said, noting the medical profession’s still-nascent view of palliative care. “Many still see it as not compatible with curative care or equating palliative care with hospice care and therefore as premature, or ‘giving up.’”

Living at the End

Kasey Sinha, GSS ‘19, received the prestigious post-MSW palliative care fellowship in the Division of Palliative Care at Mount Sinai Beth Israel near Union Square in Manhattan.

When Sinha’s grandmother was dying three years ago, Sinha read Elizabeth Kübler-Ross’ seminal book On Death and Dying, which famously outlined the five stages of grief (denial, anger, bargaining, depression, and acceptance). From that moment she was drawn to the profession.

“I started doing research and came across palliative care, and was so moved by it,” said Sinha. “I felt like I had finally found my calling.”

She noted that everyone approaches the end of life in their own way and she feels privileged to bear witness to that.

“I love talking with people about their lives, how they’re coping, and what they’re struggling with,” she said. “As clinicians, we only see a small part of someone’s life, and being able to learn about them as a person, and not just as a patient, is a pivotal part of this work.”

A lot of patients who don’t believe in an afterlife take time to review their past and think of what their life means to them, she said. Other patients who believe in an afterlife look beyond their time on Earth.

“I often hear people talk about what they think heaven is like, or saying that they’re so excited to be reunited with people they love,” she said.

And still others are not ready to face mortality and want life-prolonging measures at all costs.

“Again, it’s really sort of understanding where the person is coming from and what they want, like if they want to hear serious news or how they want to hear it, so we ask a lot of questions,” she said.

Amidst the pain, Sinha finds beauty.

“People always ask me, ‘How can you do this work? It sounds so sad.’ But there is so much joy in seeing how much people love each other. So when you’re meeting someone who’s coping with a very serious diagnosis or you’re working with a family whose loved one is at the end of their life, being able to witness the love and care that they have for one another is incredible.”

“We put them in bags and just sucked all the air out so they would be flattened and we could get as many in there as possible,” said the longtime nurse.

The high-tech dressings, donated by a medical supply company, had proved very successful in treating the infected wounds of the patients she and her husband Al Hartmann, M.D., FCRH ’63, see on their homestead visits in Swaziland. It was December, and the couple was preparing to head back in January to the tiny southern African nation, where they spend six months of every year providing home-based medical and palliative care in poor, rural communities ravaged by AIDS, cancers, and other illnesses.

“Some of [the bandages]you can put on and leave for seven days,” which is very helpful for wound care out in the bush, Kathleen said.

Creative Solutions

It’s been 15 years since Kathleen first helped to establish the home-based health team in rural Swaziland, and she and Al have learned more than a few creative tricks and solutions. On their visits with the home-based care team from the Good Shepherd Mission Hospital, they see as many patients as they can in a 60-mile radius, administering medications and treating the symptoms of the sick and dying. But they also provide whatever they can that will make life easier on these families, with whom they’ve grown very close.

“You can’t really give somebody a pill or dress a wound without giving them nutrition and clean water and making sure their roof gets put back together,” Kathleen said.

In addition to the bandages, the Hartmanns planned to bring collapsible lanterns they found at a U.S. camping store. The simple tools provide light in huts where there’s no electricity. “They work so well,” Kathleen said. “People giving morphine in the middle of the night to a sick person with no light—how do you even do that?”

They’ve also learned to put markings on syringes for caregivers who can’t read, and to make charts where they could check off smiley faces or sad faces to record whether or not the dose was effective.

Over the years, the Hartmanns have held small fundraisers at a Manhattan bar to raise money for their work in Africa. That funding has paid for supplies, including food packs with cooking oil, beans, a type of corn meal, and peanuts for protein.

“There are so many things that factor into the health issues—from nutrition to housing to sanitation to water—that sort of get extended into what we do,” Al said.

Answering a Calling—with Support

Just before Kathleen’s first trip to Swaziland, the Hartmanns were living in Malone in upstate New York, where they had raised their three children. After the kids had finished college—two of them at Fordham—Kathleen, who had worked as a hospice nurse in Malone, felt a strong calling to help those suffering from AIDS in developing countries. She contacted the Catholic Medical Mission Board, and they connected her with the Good Shepherd Mission Hospital in Swaziland.

Al was medical director of a hospital and had started a cardiac rehab program so he couldn’t leave his job just yet. “I was the support group on this end,” he said—coordinating donations and other details.

Though she’d done outreach in poor communities in the U.S., Kathleen said nothing could have prepared her for what she saw when she arrived.

Facing a Pandemic

“In 2001, the pandemic of AIDS was taking over the hospital,” she said. “There were people lying everywhere. You could barely walk. They weren’t even in beds. They were on the floors and dying because there were no medications.”

A monarchy with a population of about 1.45 million, Swaziland has the world’s highest estimated prevalence rate of HIV-infected adults—27.4 percent of people aged 15 to 49, according to a 2013 estimate by the Centers for Disease Control and Prevention. And it was worse back in 2001, before antiretroviral drugs were available in the country.

“It was a death sentence,” Kathleen said.

To make matters worse, many of the sickest patients couldn’t even make it to the hospital because the journey was too long and treacherous. They were dying in their homes from this mysterious disease that was wiping out their young people and leaving children orphaned. Some Swazis thought it was a curse.

When she got to Swaziland, Kathleen met Anna Zwane—a nurse and former head matron of Good Shepherd who had been called out of retirement to address the crisis. She was charged with helping people go home to die, instead of dying alone in the hospital.

Kathleen calls her “the Mother Teresa of Swaziland.”

“I’ve never been closer to another human being except my husband. She’s an amazing woman, and she’s still helping us. We call her every week,” Kathleen said. Zwane founded the home-based care team, and Kathleen helped her organize and grow it. She went back a few times on her own, and Al began joining her in 2012.

“The work she started [with Anna]has become sustainable, which we consider sort of a big positive because not all outreach efforts are sustainable,” Al said.

Providing Palliative Care 

An internist and a palliative care physician, Al had been providing home hospice care through Visiting Nurse Service since the Hartmanns moved to Manhattan in 2003. So he’d had a lot of experience doing the kind of work Kathleen and Anna had been doing in the field.

“They were doing in Swaziland what we were doing here, except they didn’t call it that,” Al said.

In 2012, with Al on board, the team started a formal palliative care program. They were finding that even though HIV patients were living longer because of the antiretrovirals, they began developing what the Hartmanns called “horrific cancers”—like cervical and uterine—that affected women in their 20s, 30s, and 40s. The only pain medication available to them was Tylenol, and it was hardly adequate. Through a lot of lobbying, Al was able to get a U.S. government program to provide morphine for these patients—a big component of the team’s palliative work. This program required a more intense level of care.

“You can’t see [palliative care patients]once every two months. You’ve got to see them as often as you need to see them, because they need such aggressive symptom management,” Al said. “So we dedicated one day a week just to do palliative care work. Now it’s gotten so big, we kind of put it on the other days when we’re in certain areas.”

“They Raise the Roof Singing”

Al said that spiritual care is a major part of caring for the sick and dying, noting that it’s impossible to do one well without the other.

Al added: “They raise the roof singing. All of them are born with voices. It’s unbelievable. Some people are better than others. I’m OK. Kathleen is good. The Swazis are amazing.”

Cultural Learning Curve: The Cotton Ball Story

Working in another culture, particularly one steeped in abject poverty, presents a cultural learning curve. Case in point—an anecdote Kathleen calls “the cotton ball story.”

The team had been tending to a woman with lung cancer and terrible wounds on her breast that she had been cleaning with cotton balls. So they irrigated the wound and removed the cotton, and brought her caregiver some fresh bandages that wouldn’t stick to the wound. They left them there in a Ziploc bag.

“We went back a few weeks later. … I look and here’s this cotton ball stuck to the wound again. Same thing. I thought, obviously I didn’t teach her properly.” She asked the caregiver why she hadn’t used the nonstick bandages, and learned it was because they didn’t know how to open the bag.

“And they didn’t want to rip the bag because it wasn’t theirs,” she said. “So, talk about learning. That was a big learning moment for all of us. “

A Little Help from a Friend

Last summer, the Hartmanns had a little help in Swaziland from their son Al’s old Fordham roommate, Michael Davidson, FCRH ’94, managing director and head of real estate for the Americas at JPMorgan Chase. (The Hartmanns’ other son, Ken, is a 1995 Fordham College at Rose Hill graduate. They also have a daughter, Maureen. And Al’s father, Al Hartmann Sr., is a 1932 Fordham graduate.)

Davidson was looking to take a vacation, he said, “but not a vacation that was from luxury to luxury. I wanted to go to a place where I was going to be in touch with some real struggles that human beings are facing in this world.”

He spent two weeks going on homestead visits with the Hartmanns and their team, delivering supplies (including lollipops for the children), fixing gutters, and bearing witness to the suffering and poverty. But, Davidson said in a recent article he wrote about his experience, he never heard a complaint.

“I was charmed by the sense of grace and humility among people that have faced such challenges. How kind they were. So many people with so much often aren’t kind. That was to me the most startling aspect of the trip.”

On these visits, the Hartmanns were greeted like “a family member you love dearly,” said Davidson, a member of Fordham’s President’s Council. “They are so loved and trusted in a deep human way.”

Lasting Bonds

Over the years, the Hartmanns have developed close ties with many of the Swazis that they see year after year. Perhaps their closest bond is with Thobani Khuzini, whom Kathleen met in 2001 when he was 11. Thobani was born with spina bifida—a spinal condition that rendered his legs useless. The Hartmanns helped him get the medical help he needed, including a double amputation of his legs below the knee.

Kathleen calls Thobani her sixth grandchild, and she lights up when she says his name. He’s a strong man of 27 now, getting around handily in his wheelchair, working and supporting his mom and the many children that live in his homestead. He also helps the Hartmanns in their work with other families, including gardening. “Thobani gets right out of his wheelchair, gets in the ground and digs,” Kathleen said. She hopes to bring him to the U.S. next year for a visit.

The Hartmanns have also grown close with several of the “gogos”—an affectionate Swazi term for grandmothers.

“A whole generation of young people have been wiped out with HIV/AIDS. The children that they left behind are being cared for by their grandmothers,” Al said. “These people may be taking care of 10 to 15 children. With no financial backing. So I’ve often said, when TIME magazine is looking for someone for their Person of the Year, they should think of these African grandmothers. Because they are the cement and the glue that keep it together.”

Another couple that the Hartmanns have grown close to is Kapteni and his wife, whom they call Gogo Kapteni. “They were living in a tiny little house made out of just pieces of corrugated iron that they had found around. So we took care of them medically. … Then, as time went on, we helped build a house for them,” Kathleen said.

The couple “love each other desperately,” she said. When she was hospitalized with a tumor, he walked miles every day to be by her side.

Kapteni and his wife had no place to cook in their modest home, so some of the young men that Al and Kathleen had helped over the years helped to build a kitchen for them. “They go back regularly to fix it for them. They’ll go back to help them plant their maize. So these young Swazi men, through working with the home-based care team, and [other organizations], have learned outreach. So, they’ve been helped, and now they’re helping their own people.”

Photos from Swaziland courtesy of the Hartmanns and Michael Davidson. 

Months into her battle with Alzheimer’s, Jessica Morales’ mom developed aspiration pneumonia—the most common cause of death for Alzheimer’s patients. Breathing problems and infections led to frequent and frustrating trips to the emergency room. Morales knew her mother was dying. But she also knew she needed more extensive care than could be provided at home. So she brought her to Calvary Hospital in the Bronx, where staff treated her physical symptoms and so much more.

“I knew I needed the support to get through this time with her,” said Morales, FCRH ’97, an actress who grew up on the Lower East Side of Manhattan. ““The care there was so different from the beginning.” Hospital staff turned her mother in her bed every two hours, she said, brushed her hair the way she liked, and played her favorite Mexican music to soothe her. “It was an individualized approach.”

“Every time we have a meeting here, everybody’s hugging,” said Michael J. Brescia, MD, FCRH ’54, Calvary’s executive medical director. It’s a side effect, he said, of the culture of the facility, where alleviating emotional and spiritual suffering is as crucial as treating the physical symptoms of disease. “You have to touch your patients. You have to hold their hands. And it’s got to mean something to you.”

Fordham and Calvary have enjoyed a close relationship for years, forged in part by Brescia’s love for his alma mater. “Fordham gave me the gift of faith,” said Brescia, who says a silent prayer each time he enters a patient’s room. That personal connection led to a professional partnership. Fordham faculty have conducted research at Calvary, and Calvary medical staff have lectured in Fordham programs. An October 20 symposium at the University highlighted that research, fostering a discussion on the complex issues surrounding palliative care.

Mary Beth Morrissey, PhD, FCRH ’79, LAW ’82, GSS ’11, a healthcare attorney and researcher, and the director of Fordham’s Healthcare Management Certificate Program in Public Health, Palliative Care, and Long-Term Care, organized the conference.

“The relationship with Calvary is a very meaningful one for Fordham,” she said, particularly when it comes to research. “Our faculty is working across the whole spectrum of palliative care.” In one study, Fordham psychologist Barry Rosenfeld, PhD, and Fordham psychology graduate students explored meaning-centered talk therapy with Calvary patients as a way to provide a sense of peace at the end of life. “We’re trying to understand that palliative care is both medical and social,” Morrissey said.

Insurance companies have been slow to fund palliative care, and so Morrissey and her colleagues aim to put it in the larger context of healthcare reform and value. “This is really about changing a cultural paradigm,” she said. “I think the problem is, in our Western culture, we have been very reluctant as a society to engage in any discussions about limits on care or how we’re going to allocate resources.”

Fixing a Broken System

Presenting the keynote at the October 20 conference was Philip Pizzo, MD, FCRH ’66, pediatric oncologist and former dean of the Stanford School of Medicine. A nationally respected policy advocate, Pizzo has helped lead major studies on palliative care and end-of-life care for the Institute of Medicine: the groundbreaking Relieving Pain in America, published in 2011, and last year’s Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life.

“It’s not whether to choose more or less care, but whether to honor individual preferences,” said Pizzo, a microbiology and immunology professor at Stanford and founding director of the university’s Distinguished Careers Institute. And pain, he points out, is not just an end-of-life issue. An estimated 100 million people in America suffer from chronic pain. A few years ago, he became one of them. “It became very personal,” he said of the chronic neuropathic pain he experienced after an injury. “Suddenly I was completely incapacitated, so I absolutely appreciated how it literally saps the energy and the sense of purpose from anyone.”

At Calvary, Brescia and his staff view depression and psychological pain as one of several types of suffering to focus on when caring for patients. Patients also struggle with spiritual suffering, he said, asking themselves, “Is there a supreme God that loves me and knows what I’m going through?” And Calvary staff are equally cognizant of familial suffering. Morales, who slept on a cot in her mother’s room during her stay at Calvary, received a massage through the Family Care Center, which she called “a little haven.” And when her mom died, a Calvary chaplain was there at Morales’ side.

When it comes to physical suffering, hospital staff fight aggressively, Brescia said. Calvary physicians have worked to find alternate methods of delivering opioids for pain relief, and they’ve perfected techniques like using a gastrostomy tube to alleviate nausea common in end-stage cancer patients.

Cost Versus Value

That kind of comprehensive care is not without its costs. Calvary, a nonprofit, loses millions of dollars a year, much of it made up in fundraising. But the world-renowned physician was never in this work for the money.

Before he got involved in palliative care, Brescia achieved fame in the mid-1960s for the Brescia-Cimino fistula, a surgically created connection between veins and arteries used in hemodialysis patients. People came to the Bronx from all over to be treated for chronic kidney disease, he said, and Calvary was beginning to collect full compensation for dialysis so they could build a new facility.

“But I went to tell my father, a little Italian immigrant,” Brescia said. He explained the invention and said that centers would open around the world in a year’s time, and he’d stand to make quite a bit of money. The older man said, “A year? Why a year?” When Brescia explained that it would take time to set up the lucrative contracts, his father asked, “How many die in a year?” Brescia told him 50,000, and his father’s face dropped. “‘Give it away,’” he told his son in Italian. When Brescia protested, his father said, “‘When you shave in the morning, the faces of the children will appear in the mirror, [children]who should be with their parents. They will not be because my son, who I should be so proud of, has to have five cars, five boats, five houses.” Brescia knew his father was right. “I left his house and [we]published [the research].”

Clinicians began using the procedure and contacting Brescia for his expertise. “Doors just opened,” said Brescia, who is considered a pioneer in modern palliative care. “They wanted to hear about all the renal work. The price of that was that they had to hear about the palliative work,” which he was now doing at Calvary. He said he and his colleagues were able to get many federal laws passed “that enabled us to survive and prosper.”

Collaborating on Care

But getting insurance companies to cover the cost of palliative care is still a challenge, despite the empirical evidence that it lowers hospital readmission rates, said Falguni Sen, PhD. Sen directs the Global Healthcare Innovation Management Center at Fordham, which presented the October 20 panel discussion in conjunction with the Fordham Science Council.

“Palliative care, in my opinion, has been the first group that has really tried to look at healthcare in an integrated way,” he said, noting that the Affordable Care Act has given providers some options through which they can include palliative care. He cited new accountable care organizations that accept a total fee for the care and well-being of Medicare patients rather than a traditional fee-for-service arrangement.

Sen said his center, part of the Gabelli School of Business, aims to build on Fordham’s collaborations with Calvary Hospital to explore programs based on these new provisions. He hopes to expand the University’s certificate program in palliative care—which includes Calvary medical staff as instructors—to offer “more skill-based” programs. The University’s Graduate School of Social Service also offers an increasingly popular palliative care program, which has MSW students completing fieldwork at Calvary. And Sen anticipates Fordham faculty from several disciplines wanting to make a difference in the way care is delivered.

“We’ve got to move out of the purely medical care model on palliative care. It’s not just a question of managing pain through medication,” he said. “Pain is something that is so complicated … and it requires care and consideration on so many levels.”

Listen to Dr. Pizzo discuss palliative care and his work at the Distinguished Careers Institute on WFUV’s Fordham Conversations.