Palliative Care: A Whole-Picture Perspective
This article originally appeared in the Fall 2019 issue of Columbia Nursing Magazine.
If you want to peer into the future of palliative care nursing, a good place to start is the ColumbiaDoctors Primary Care Nurse Practitioner Group on West 168th St.
This morning, Debra Miller-Saultz ’10, DNP, an assistant professor of nursing, is examining a patient who embodies many of the changes sweeping the field. A 69-yearold immigrant from Southeast Asia, the woman has a passel of comorbid conditions. She sees nine specialists, including an endocrinologist for her diabetes, a cardiologist for her heart disease, and a nephrologist for her kidney problems. A neurologist treats her neuropathy and the effects of a mild stroke. Then there’s an ophthalmologist for her retinopathy, a urogynecologist for her incontinence, and the list goes on.
The woman has come in today because of swelling in her lower legs. Miller-Saultz checks the patient’s labs and performs a physical exam. But as a fellowship-trained palliative care specialist, she also asks some questions that most other practitioners might not think of: “Who’s managing your medications? How’s your mobility? How are you handling household chores?” It emerges that the woman’s caregiver, her sister, is away in their home country. As a result, the patient has been eating salty, greasy takeout—which may be why her blood pressure and cholesterol are soaring. Her blood sugar levels suggest she may also need assistance administering her insulin shots. She says she could use help cleaning her apartment, too.
Besides referring the woman to a vascular surgeon for evaluation of her lower extremity venous insufficiency, Miller-Saultz schedules a house call by one of the practice’s NPs to further assess her situation. “Everybody takes care of their little piece of this lady, but nobody’s really looking at the whole picture,” she explains after the patient hobbles out. “That’s what palliative care is for.”
Who palliative care is for is a less settled matter. When Miller-Saultz first entered the discipline, in the early 2000s, it was mainly associated with the hospice movement and specialist care for pain and symptom management; its mission was to bring comfort to terminally ill patients in their final days. Lately, however, the aging of the U.S. population, along with the rising incidence of chronic illnesses—as well as the advent of life-extending treatments for various pediatric conditions—has led to an increasing use of palliative approaches for patients whose deaths may be years away.
Reflecting that shift, a 2018 report by the National Consensus Project for Quality Palliative Care offered an expanded definition of the field: “Beneficial at any stage of a serious illness, palliative care is an interdisciplinary care delivery system designed to anticipate, prevent, and manage physical, psychological, social, and spiritual suffering to optimize quality of life for patients, families, and caregivers.” It can be delivered in settings ranging from inpatient floors to outpatient centers, from private homes to rehab facilities. Research shows that it can help patients live better, and often longer, while lowering the costs of care. Still, according to a study in the New England Journal of Medicine, nearly 60 percent of those who could benefit from such care don’t receive it.
Over the past year, Columbia Nursing has launched an array of initiatives aimed at closing that gap—and helping prepare the field for the challenges ahead.
"What makes palliative care so powerful is that it focuses on the patient rather than the disease,” says Penelope Buschman ’64, MS, RN, a retired assistant professor of clinical nursing. “We see it as a philosophy of care as well as a system of services. And our goal is to integrate that philosophy at every level of nursing education, as well as nursing research and clinical practice.”
Columbia has been a leader in that effort since 2003, when Buschman, then director of the psychiatric nurse practitioner program, helped establish one of the country’s first subspecialty programs in palliative care nursing. The program, which has both adult and pediatric tracks, is open to NPs in all specialties; its curriculum includes an introductory course, a clinical rotation, and a seminar in which students discuss issues that arise during their clinical rotation.
In 2013, Columbia Nursing added a Fellowship in Palliative and End-of-Life Care, funded by the Louis and Rachel Rudin Foundation. One of just a handful of palliative care nursing fellowships in the U.S., it’s designed for doctoral and postdoctoral NPs who aim to specialize in palliative care— whether in clinical practice, in the health-care policy arena, or as educators. Fellows are placed in a variety of palliative care settings until they accrue at least 500 clinical hours. Course topics include advanced pain and symptom management, care planning, bereavement support, self-care, therapeutic communication, and the ethics of dealing with patients and family members when they are at their most vulnerable. Students learn partly by example, watching experienced faculty members make difficult care decisions or discuss sensitive issues with a patient’s loved ones; later, they take on such responsibilities themselves, under a mentor’s watchful eye.
But in recent years, it has become clear that such expertlevel programs aren’t enough. “We realized that most of our students are going to be dealing with complex chronic illness,” says Marlene McHugh ’89 ’91 ’08, DNP, a fellowshiptrained associate professor of nursing and a co-founder of both the subspecialty and the fellowship. “That means everybody needs to have these skills.”
So in April 2018, the school announced that it would incorporate the principles of palliative care into the curricula of all its graduate programs. The new policy is the brainchild of the school’s Palliative Care Planning Group, led by Buschman; other members of the group are McHugh; Miller-Saultz; assistant professor Mary Ellen Tresgallo, DNP (another program co-founder); and assistant professor Karol DiBello, DNP. Palliative care education now begins during the first-year Care Coordination course taken by every MDE, NP, and DNP student. Along with classroom work, students must complete six online End-of-Life Nursing Education Consortium modules developed in partnership with the American Association of Colleges of Nursing. The modules introduce concepts covered in more advanced palliative care courses—in part to draw more students toward the field, but also to equip those going into general practice with an increasingly essential set of tools.
“Palliative care is a partnership with patients and their families,” says Buschman. “It means not just understanding physiology and disease trajectory, but knowing how to listen, be present, and respect people’s needs and wishes. It requires acceptance of the fact that every human being responds differently to the experience of disease or major injury. Our job is to provide information and help with decision-making, but never to impose.”
Empathy and openness are essential—but not sufficient— for successful palliative care. One of the biggest challenges in the field is determining which care practices produce the best results for different subpopulations of patients, particularly older adults with multiple chronic conditions (MCCs). Such patients, known as “super-utilizers,” account for 93 percent of Medicare spending. They are likely to have more complications and longer hospital stays than others their age and to experience end-of-life crises that result in higher costs without generating significant gains in quality of life or survival—and, indeed, sometimes causing increased suffering.
Another new venture at Columbia Nursing, the Center for Improving Palliative Care for Vulnerable Adults with MCC (CIPC), supports nurse-scientists seeking better ways to care for super-utilizers. A partnership with the Visiting Nurse Service of New York (VNSNY), funded by a $2.7 million grant from the National Institute of Nursing Research (NINR), the CIPC is co-directed by Patricia Stone, PhD, RN, the Centennial Professor of Health Policy, and Jingjing Shang, PhD, RN, an associate professor of nursing; Columbia Nursing researcher Maxim Topaz, PhD, RN, the Elizabeth Standish Gill Associate Professor of Nursing, is the principal investigator of the VNSNY site. “We’re promoting what the NINR calls ‘the science of compassion,’” Stone explains, “especially as it applies to end-of-life care.”
The CIPC is currently sponsoring two pilot studies. The first, led by assistant professor Eileen Carter ’14, PhD, RN, is investigating antibiotic use in New York City nursing homes to determine whether it serves the wishes of patients and their loved ones. Carter’s team is investigating why and how often these medications are being administered and whether patients and family members fully understand the drugs’ risks (such as adverse reactions and opportunistic infections), as well as their potential benefits. The second study, designed by associate research scientist Carolyn Sun ’15, PhD, RN, is looking into how Chinese-Americans cope with end-stage renal disease, with the goal of developing culturally appropriate, evidence-based palliative care strategies for this underserved population.
Recently, the NINR announced the availability of supplemental funding for research centered on bioethics. The CIPC responded with a proposal by associate research scientist Bevin Cohen ’17, PhD, RN, for a study examining issues related to end-of-life care for patients who are unable to make their own decisions and who lack advance directives or surrogates who can speak for them. Cohen, who holds a joint appointment at Memorial Sloan Kettering Cancer Center, calls such patients INEADS (pronounced “in needs”), which stands for incapacitated with no evident advance directives or surrogates. “When life-and-death decisions have to be made, the health-care team has no way to know an INEADS patient’s needs and wishes,” says Cohen. “We suspect this is a growing phenomenon. But very few studies have been done on these patients, so no one even knows how many there are, let alone how providers deal with them.”
If Cohen’s study is funded, whether through the NINR supplement or other means, she and her team will work toward answering both questions. To probe the quantitative aspects of the issue, they’ll use natural language processing programs to analyze electronic health records from two databases: one of 39,000 patients treated at a Boston hospital, the other of 89,000 home-care patients seen by the VNSNY. To understand the issue’s qualitative aspects—how clinical decisions are made in INEADS situations and how those decisions affect all those concerned—the team will conduct focus groups with providers and bioethicists, as well as interviews with individuals identified as being at risk of becoming INEADS patients.
For Cohen, gathering such data is more than a matter of mere curiosity. She has a particular interest in the ethical choices associated with palliative care. “When I was doing clinical rotations in nursing school, I saw too many patients at the end of life entering a trajectory that no one would wish for,” she explains. “I remember one woman who was on a ventilator, in restraints, and extremely agitated. I found out she had metastatic breast cancer and AIDS, and she was homeless due to psychiatric illnesses. She’d made a suicide attempt, but EMS had found her and she’d wound up alone, tied to a machine, and absolutely miserable. There’s a human cost to that, but also a health-care cost that we all end up paying. If we can redesign the system to make sure people receive the kind of care they want, everybody wins.”
The notion of improving outcomes while lowering costs is also central to a pilot project getting underway at the ColumbiaDoctors Primary Care Nurse Practitioner Group’s primary care practice. This initiative—led by Stephen Ferrara, DNP, RN, associate dean of clinical affairs and associate professor of nursing, in conjunction with the Palliative Care Planning Group—targets Medicare patients whose use of health-care resources is exceptionally high. Using data from NewYork Quality Care (the accountable care organization for NewYork-Presbyterian, Columbia’s Vagelos College of Physicians and Surgeons, and Weill Cornell Medical College), the team has identified 20 such patients who receive their primary care from the 168th St. location. “We’re looking at people who might have been diagnosed with congestive heart failure, and they call 911 when their breathing gets a little more difficult,” Ferrara explains. “They wind up spending hours in the emergency room, getting a battery of tests, and being admitted for observation, when all they really needed was a diuretic pill. We want to spare them that experience.”
To that end, the Nurse Practitioner Group plans to systematically incorporate palliative approaches into the care these patients receive. All 20 will be cared for by Miller-Saultz and two other seasoned NPs—assistant professor of clinical nursing Marie Carmel Garcon, DNP, RN, and instructor in nursing Yudelka Garcia ’12 ’14, MS, RN, who are both receiving additional training in palliative care. These providers will also have on-call access to the faculty’s palliative care specialists and will hold regular care-review meetings. Patients in the program will be prioritized for completing advance care directives. And they’ll be fast-tracked for appointments (or, eventually, telehealth consultations), reducing their temptation to race off to the ER. “We’ve found that most patients would actually rather not go to the hospital,” says Ferrara. “By expanding our intervention tool chest, we may be able to help them do just that.”
Like most clinical initiatives at Columbia Nursing, this one will be studied carefully by in-house researchers, who will measure its effects not only on emergency-department visits but also on hospital lengths-of-stay and patient satisfaction. If it works, Ferrara says, “we hope to offer this model to all our high-risk patients. We want to make it part and parcel of our practice.”
Over the years, the school’s leadership in palliative care nursing research, practice, and education has made waves far beyond the campus, whether by providing crucial data, establishing treatment protocols, or sending superbly trained graduates out into the world. One of the latter is Vanessa Battista ’06 ’08, MS, RN, who enrolled at Columbia Nursing after a stint as a research coordinator for patients with amyotrophic lateral sclerosis. That experience inspired her to enter the palliative care subspecialty program. “One of my ALS patients had told me, ‘Having this disease makes me wonder how there could be a God,’” she recalls. “For me, palliative care brought together all the things that drew me to nursing—not just the medical, but the emotional, spiritual, and psychological elements.”
After earning a master’s degree and board certification as a pediatric nurse practitioner, Battista worked as a clinical coordinator at Columbia University Irving Medical Center, then completed a certificate in pastoral ministry at Boston College. In 2010, she joined the faculty of BC’s William F. Connell School of Nursing, where she developed a pediatric palliative care master’s subspecialty.
The integration of palliative-care concepts into pediatrics represents another of the evolving aspects of the field. Whereas palliative care was once envisioned as a resource mostly or even solely for older people, it is now being integrated into care for children and even infants who could benefit from the “whole-picture” perspective that distinguishes the field.
“The beauty of this kind of nursing is that you’re looking at all the pieces of what makes a person a person,” says Battista, who’s currently pursuing her DNP at the Johns Hopkins School of Nursing. “But I might never have discovered that if it hadn’t been for my teachers at Columbia Nursing, who believed in me and fostered my growth. Mentors like Penny Buschman not only awakened my passion for palliative care, but they showed me how to put it to work. Being around these brilliant, caring people shaped the clinician I am today.”