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 the Graduate School of Social Service (GSS), one of a handful of programs of its kind nationwide. Today she is an oncology social worker at 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.”
Cathy Berkman, Ph.D., associate professor of social work, is the director of Fordham’s Palliative Care Fellowship and has been in the field since the mid-1990s. She 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. They received CPR and other unwanted life-sustaining treatments, with untreated pain at end of life. A second part of the study tested an intervention by nurse practitioners who liaised between the medical team, the patient, and the family to ascertain and communicate care preferences. Despite their efforts to coordinate care that respected patients’ wishes, nothing changed.
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.
Berkman noted that these efforts to manage pain and comfort do not interfere with traditional medical treatment.
“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.
The Palliative Care Fellowship
The Palliative Care Fellowship began at GSS in 2013. A three-year grant from the Fan Fox and Leslie R. Samuels Foundation initiated the fellowship, funding stipends for students. A Phase II grant was awarded in 2017, allowing the addition of bioethics seminars and career mentors. A recent $1 million gift from longterm GSS supporters, Kathy MacLean and Brian MacLean, both FCRH ’75, will ensure the program continues through the MacLean Family Graduate School of Social Service Endowed Scholarship Fund, which was established in 2014.
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 that 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. Berkman is a constant presence throughout, meeting fellows for lunch once a month and advising them during the fellowship year and assisting with their career after graduation.
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.”
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.
The Arc of Palliative Care
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 delivered simultaneously with curative treatment, said Berkman. She noted that the 2010 study examined only late-stage lung cancer patients, but, as mentioned, ideally palliative care would 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, whether the doctor is an oncologist, neurologist, or cardiologist, they 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.”