Many of us will experience some form of chronic pain or illness in our lifetime. One study from the Centers for Disease Control and Prevention suggests that over half of adults in the United States have been diagnosed with at least one chronic disease, while many grapple with two or more.
Imagine that yourself, a family member, or a close friend suffered from symptoms such as pain, fatigue, and shortness of breath on a daily basis. What kind of care would be most important to you?
Salimah Meghani, a professor of nursing and director of the Palliative Care Certificate program in the School of Nursing, guesses the first thing that comes to mind wouldn’t be a CT scan or a long series of tests ordered by a physician.
Rather, many people might hope for an approach to care that would optimize their quality of life and mitigate the suffering associated with serious illness. Palliative care offers a holistic form of treatment designed to address these concerns, which the Perelman School of Medicine is beginning to recognize and address.
According to the National Institutes of Health, palliative care is “specialized medical care for people living with a serious illness,” intended “to enhance a person’s current care by focusing on quality of life for them and their family.” From heart disease to cancer to dementia, palliative care is an invaluable resource for anyone living with a serious illness at any stage. It provides an additional layer of support in an attempt to relieve some of the debilitating burdens of disease for patients and their families.
Because palliative care is an individualized practice for both the patient and provider, the definition differs slightly based on who you ask, though most include some mention of managing pain, relieving stress, and enacting meaningful patient–provider communication. Fourth–year medical student Rama Godse simply says palliative care is intended “to lift the burden of human suffering in a medical context.”
Aidan Crowley, a second–year medical student, works at a free clinic and employs palliative care concepts there. “I'm asking them about their goals and values. ‘How easy for you is it to obtain your medication? How does this treatment fit into your daily life? What’s important to you that we can make sure happens outside of just taking your meds?’” she says.
The conversations Crowley has with the free clinic patients she sees don’t involve end–of–life care, yet palliative care considerations are still essential to improving quality of life. Often, palliative care is misunderstood and conflated with hospice care. “All hospice care is palliative care, but not all palliative care is hospice care,” explains Meghani.
Unfortunately, palliative care has been traditionally overlooked and undersupported in the medical realm. In 2019, the Center to Advance Palliative Care released a “State–by–State Report Card,” evaluating the provision of services based on the prevalence of hospitals with palliative care teams. While three–quarters of states were awarded a grade of A or B, a marked improvement compared to earlier reports, several states, including Alabama, Mississippi, and Oklahoma, still received Ds.
The lack of comprehensive palliative care in the United States is a complex problem, but it stems in part from deficiencies in medical school curricula. Palliative care considerations have yet to be widely integrated in early medical education, when students begin to develop and implement patient care models.
Penn is trying to change that.
This year, the Medical School launched the CARE–7 curriculum, a longitudinal palliative care program uniquely integrated into all four years of medical school, funded by a generous donation.
The curriculum formally consists of two parts. The first focuses on communication skills, introducing students to material that builds on itself over the course of many sessions. The second portion is concerned with more direct patient care, such as pain and symptom management, and practicing the application of communication skills with real patients and their families.
“Our goal is to teach all medical students … to be doctors who can empathetically and effectively communicate and care for patients with serious illness,” says Jennifer Olenik, an assistant professor of Clinical Medicine, inpatient palliative care attending physician, and co–director of the CARE–7 curriculum. Palliative care education teaches students clinical skills, but “it’s [also] recognizing that all doctors should be able to communicate effectively, [because] we know outcomes are better when doctors can communicate well,” she adds.
As a physician, learning communication skills is essential to be able to “give bad news, help support people in crisis, respond to stress and psychological symptoms associated with being really sick, and confronting your own mortality,” says Joanna Hart, an assistant professor of Medicine, assistant professor of Medical Ethics and Health Policy, and a pulmonary critical care physician. She insists that communication skills “can be taught and trained and refined in the same way that we might think about suturing.”
Students initially learn the basics of palliative care in a classroom setting, but ultimately transfer this knowledge to their real–world clinical rotations.
For example, students will practice what Olenik terms the “palliative care assessment.” This procedure involves asking patients how they’re doing holistically, including their physical, emotional, social, and spiritual health. Aspiring physicians undergoing palliative care training may also be taught to inquire about a patient’s ability to function—have they experienced changes in their capacity to do the things they need or love to do?
During the second year of medical school, in addition to the integrated portions of the curriculum, an entire day is dedicated to workshopping palliative care principles—half communication, and half pain and symptom management.
Toward the end of medical school, students engage in elective rotations to explore specialties. The CARE–7 team is conceptualizing ways to more thoroughly incorporate the palliative care curriculum in this stage of training. Still, during this time, students receive advanced communication training and learn how to take care of patients at the end of life.
Godse missed the CARE–7 curriculum rollout but chose to take an elective course on palliative care. She says the experience showed her the multimodality of factors affecting patient care and outcomes, as well as how many different types of professionals are involved in palliative care provisioning.
For example, Godse was introduced to an art therapist and a hospital chaplain at the Children’s Hospital of Philadelphia to “see how these different team members from interdisciplinary backgrounds can come together and help us.”
Similarly, Lindsay Kumble, a second–year medical student, took part in a pilot program affiliated with the CARE–7 curriculum. It gave her the opportunity to shadow a social worker—marking the first time in her educational track that she learned from a hospital employee other than a physician.
Because family dynamics inevitably become involved in caring for patients with serious illnesses, Kumble highlights the crucial inclusion of professionals who are trained to help individuals and their loved ones cope with serious diagnoses. “Illness is a great way for family and loved one conflicts to come about, unfortunately, because everyone wants what’s best for their loved one,” she says.
The Nursing School also offers several forms of palliative care education: a case study opportunity for undergraduates, a minor for graduate students, and a certificate program for postgraduates, many of whom have never been exposed to palliative care concepts. The two core minor courses address symptom management and principles of palliative care, respectively, while electives such as “Loss, Grief and Bereavement” supplement knowledge.
Importantly, CARE–7 teaches students how to cope with witnessing suffering while caring for patients who are seriously ill by reflecting on their emotions and employing narrative medicine, “a commitment to understanding patients’ lives, caring for the caregivers, and giving voice to the suffering,” as defined by the Association of American Medical Colleges.
“We’re all human,” Kumble says. “It’s very difficult to be told you’re going to have to go and watch this person die. It can be very traumatic.” She speaks to the deep anxiety and apprehension many of her classmates felt toward treating chronic illness prior to engaging with the CARE–7 curriculum: “It’s really scary to be around what they thought would be a lot of sadness and heartache and pain.”
However, Kumble has both witnessed and experienced the transformative power of Penn’s Palliative Care Program. “I think having that experience was able to sort of shatter that fear we have of engaging with this topic,” she says.
The Medical School recently hosted a panel about grief that Kumble attended. She notes the event garnered the largest audience she’s seen during her time in medical school. “People really do want to talk about this, they just want to have the tools and skills to know how to have these discussions.”
Talking about death and coping with grief is undoubtedly challenging, but the nature of doctoring requires it. “We as a society have no idea how to talk about death,” Kumble adds, though she hopes this will change by incorporating more patient– and family–centered care in medical training.
Programs like the CARE–7 curriculum are still quite rare. Most health professionals schools only offer a very basic introduction or elective palliative care education, which typically only attracts students who already have preliminary knowledge or an interest in holistic forms of patient care. According to Crowley, this is due in large part to the sheer amount of information packed into medical school curricula. “Even trying to get an hour in the curriculum is gold,” she says.
However, Crowley believes Penn was able to successfully implement a longitudinal curriculum by “shifting priorities,” rather than simply adding time to an already strained schedule. In the health professionals school environment, students undergo an extensive socialization process that traditionally emphasizes a disease–oriented approach to patient care, whereas palliative care education tries to “socialize [students] into thinking about patient care broadly, rather than focusing on the medical aspects,” says Meghani.
This shifting of priorities to put a premium on palliative care education that Crowley speaks of would not only benefit Penn and other medical and nursing schools, but also the health care system at large.
Meghani explains that the predominant model of health care delivery in the United States is fee–for–service, which is “very cure– and treatment–oriented.” By focusing on the volume of services provided, the goals and values of patients are easily lost. For example, Western medicine tends to prioritize extending the duration of life at the expense of quality of life, which may not align with a patient’s wishes.
According to Hart, palliative care and behavioral health services are “often viewed as extra by health insurance payment models,” and are therefore difficult to access for those who are socioeconomically underprivileged. When support services are neglected in the standard model of care, “the people who probably have the highest stress associated with their illness” simply go without important forms of care because they can’t afford to see a therapist.
Not only are health care–funding models unsupportive of holistic, comprehensive, and patient–specific care, there are simply not enough palliative care specialists to address the frequency of chronic illness, such that “the vast majority of people are never going to be cared for by a palliative care clinician,” says Hart.
In this context, the skills taught by the CARE–7 curriculum are even more essential. “In theory, everybody would also be focused on providing that layer of support,” at least in some sense, as in the emerging primary palliative care model, Meghani says.
Outside of the 15 minutes they meet with their physician, patients and their families must continue to contend with the realities of their disease. When this is forgotten, “it’s very hard for us to align our therapies and care to be able to maximize well–being,” says Hart.
Importantly, the palliative care resources that do exist are inequitably distributed. For example, Hart explains that patients with chronic obstructive pulmonary disease, a disease that disproportionately burdens marginalized populations, rarely receive outpatient palliative care. As an outpatient pulmonologist, Hart tries to incorporate palliative care concepts in her model of care because she has to “if they’re going to get that type of therapy.”
The same is true for individuals with diseases like congestive heart failure and diabetes. While they might receive care from a primary care doctor or specialist, most don’t have access to the additional layer of support provided by a palliative care subspecialist. Instead, the burden of caregiving falls on family members.
In her work, Meghani explores the way in which systemic factors and elements of the patient–provider relationship, like implicit and explicit biases, produce disparities in quality of care and health outcomes.
Racial discrepancies in pain management, a pillar of palliative care, is a recurring theme in the United States. In a meta–analysis published in 2012, Meghani found that, compared to their white counterparts, Black patients were 34% less likely to receive opioids for similar levels of pain in concordant care settings. Most of this research was conducted in medical environments intended to provide acute care, like emergency departments, meaning the patients considered were actively seeking pain relief.
Illness–associated stress and the burdens of informal family caregiving exacerbate the inherent challenges of living with a chronic illness. Without palliative care, these concerns may go unaddressed, and often do, for minority and low–income populations. “Those people who are most affected and have the highest need, they’re the least likely to actually be able to access that kind of care,” says Hart.
The new CARE–7 curriculum teaches Penn medical students the skills essential to caring for every aspect of a patient’s well–being on their own terms. Whether or not students choose to become palliative care specialists, they still have the knowledge to integrate the goals and considerations of palliative care into their practice.
“Every doctor should be trained in the skills to have a conversation with patients about their goals and values … because your medicine is only as effective as when your patient accompanies you in that partnership of healing,” says Crowley.
The hope is that palliative care–aligned curricula and access to comprehensive palliative care will continue to expand in the future. Centering the patients and supporting their families in the face of serious illness alleviates suffering. Palliative care is a reminder that, ultimately, doctoring should be an act of compassion.
By embracing the principles of palliative care, medical professionals are reminded that, “Patients are not really patients. They’re people who have their own values and lives and families and priorities,” says Hart.