The hospice movement got its start in the United States right here in New Haven.
In the late 1960s, former Yale School of Nursing (YSN) Dean Florence Schorske Wald attended a speech given by hospice pioneer, Dr. Cicely Saunders, at Yale School of Medicine.
"It was a pivotal moment for her," said Shelli Feder, an associate professor at YSN today and co-director for the Yale National Clinician Scholars Program. "She became very interested in this idea of promoting hospice as an alternative to what was being offered to people who were dying."
So, in 1974, Wald teamed up fellow nurses, doctors, and clergy to start Connecticut Hospice, the first of its kind in the United States. Since then, hospice care - and more broadly, palliative care - have become common across the country.
"Florence Wald was a force, and she really set in motion a movement that has helped millions and millions and millions of people," Feder said. "I see my role as continuing the movement through research, teaching, and practice."
At Yale, Feder is building upon Wald's legacy as the director of YSN's Palliative and End-of-Life Care Innovation Lab (PECIL), a research lab dedicated to the advancement of palliative and end-of-life care for all people with serious illness through cutting-edge, high-impact research.
In an interview, Feder explains the differences between palliative and hospice care, the work of her lab at Yale, and the importance of a "good death."
The interview has been edited for length and clarity.
The terms are often used interchangeably but what is the difference between palliative care and hospice care?
Shelli Feder: Palliative care is a type of care that is focused on maximizing quality of life for any person with a serious illness. So much of what palliative care centers on includes managing symptoms, helping patients to really cope with their disease, and making sure that the care that patients and families receive aligns with their goals and preferences. There is no specific diagnosis necessary to receive palliative care. Palliative care is provided by an interdisciplinary team. So, it includes people like me who are advanced practice providers. It also includes physicians, social workers, psychologists, nurses, and chaplains. The idea being, of course, that the experience of living with a serious illness is multifaceted and is best addressed through an interdisciplinary, holistic approach.
Hospice is a bit more prescribed. Hospice is care for people who have a serious, generally terminal, illness and who've been identified to have a prognosis or a life expectancy of six months or less. It's really about making sure people are living the way they want and getting the care they want as they transition. Hospice is really grounded in care for the end of life, whereas palliative care is kind of this broad umbrella. The other important distinction is around treatment. When a patient decides, and their family decides, to elect hospice, they often decide to no longer pursue curative therapies.
Tell us about the work of the Palliative and End-of-Life Care Innovation Lab at Yale.
Feder: I oversee a couple of different projects right now around access and quality of palliative care and end-of-life care. One project is looking at palliative care access and quality within the U.S. Department of Veterans Affairs [VA]. We're very interested in how the VA, which is the largest integrated health care system in the U.S. with over 140 VA medical centers, provides palliative care to patients specifically with heart failure. The VA has been at the forefront of palliative care delivery. They were an early promoter of palliative care. But there's a lot of variation in the system. Some medical centers are doing better at it than others.
So, the goal of this research is to identify best practices in providing palliative care and disseminating them across the system. The second project is a collaboration with the Yale New Haven Health [YNHH] system to develop a clinical decision support tool to help busy clinicians identify when somebody might need palliative care. The third project is to evaluate an initiative from the YNHH system where they implemented something called the mortality surprise question into their workflow in the emergency department. The mortality surprise question asks, "Would you be surprised if this person were to die in the next six months?" It's intended to help clinicians reflect on patient needs and identify patients for whom a serious illness conversation should happen early during hospitalization by the primary team or by palliative care.
What does compassionate care look like at the end of life? What does it mean to have a "good death" today?
Feder: What we think is a good death has changed over the decades. There is no single good way of dying. It's really about what matters most to that person and how they want to die and where they want to die and what they want to do before they die. Part of providing good hospice care is trying our best to make sure that that happens.
One of the most beautiful things about hospice is about reframing end of life and living with a critical or a life-limiting illness. Oftentimes by the time patients get to hospice, which too often is too late, they're tired. They have been in and out of the hospital; they've been stuck a gazillion times for IVs; they've undergone tests; and they're tired of all that intervention and invasiveness. Hospice is an opportunity to sit down and talk about what matters most to you right now. We can't change the fact that you're dying. But what we can change is how you're feeling in this moment. That's the definition of dying well.
You are one of the people behind the Palliative Care Law and Policy GPS, which tracks legislation on palliative care across all 50 states. What are some of the best ways to improve access and quality of care through policy?
Feder: There are two ways to do this. The first is at the federal level through legislation called the Palliative Care and Hospice Education and Training Act [PCHETA]. This piece of legislation was recently reintroduced in July 2025. Palliative care is a relatively new specialty, and more people are going to need palliative care in the future. But we have a deficit in the workforce right now. We don't have enough physicians, and we don't have enough nurses. It's a hard specialty, and so there's a fair amount of turnover. PCHETA was designed to establish training centers to train clinicians in the principles of palliative care. It also provides research funds, workforce development, and some career incentive awards.
At the state level, one of the biggest areas of palliative policy is around reimbursement. It's a lot easier right now for inpatient reimbursement [when care is provided in a licensed medical facility], but when palliative care moves into the outpatient or community-based setting, it can be difficult to find reimbursement models to support that. So, for example, how do we encourage states to cover palliative care, particularly community-based palliative care, through Medicaid programs or private payers?
