A few years after moving with her family from Iraq to the United States, Areej El-Jawahri, MD, entered the University of Michigan with plans to study law. Then her close friend was diagnosed with terminal cancer. This friend’s wrenching experiences during her final days convinced El-Jawahri to follow a new career path, one devoted to healing. Today, she practices hematology at Massachusetts General Hospital, Boston, and is a leading advocate for palliative care in oncology.
In an interview, El-Jawahri spoke about her journey from Baghdad to Boston and the future of palliative medicine in hematology.
Question: Where did you grow up?
El-Jawahri: My family is from Baghdad, Iraq, and I was born there. We moved to the States when I was 14. I came to Michigan not speaking a word of English. My parents — my father is a mechanical engineer, and my mom is a computer engineer — chose to live in a very white neighborhood in Farmington Hills, in the suburbs of Detroit. The neighborhood did not have any immigrants or Arab Americans. There are a lot of Arab Americans in Michigan, but they chose for me not to hang out with them early on so that I could learn the language. It was a really good choice.
Question: What happened to your college friend?
El-Jawahri: She had a brain tumor and ended up receiving intensive care at the end of life. We had a lot of conversations about her wishes and desires, but none of those were honored. Her ending was not something that she wanted, nor did it honor her memory.
Question: What do you think went wrong?
El-Jawahri: She was getting treatment for her family’s sake. The idea of losing her was too hard for them. I remember vividly the conversations where she would say, “I just hope I don’t end up in the hospital at the end of life.” We had that conversation explicitly. But because we were young, her family was very involved in her care. A lot of the decision-making was very complicated.
Question: How did this experience change your career path?
El-Jawahri: I went into medicine specifically to become an oncologist and cure cancer. The naive 20-year-old in me said, “Nobody should die this miserable death. I’m going to go in, and I’m going to cure it.”
Question: How did palliative medicine become your major focus?
El-Jawahri: During my first year at Harvard Medical School, I took a course that’s called “Living With Life-Threatening Illness.” It allows medical students to spend their entire first year getting to know a patient living with a serious illness. We’d spend weekly coffee or lunch breaks with them, where we’d hear about their experiences. After every weekly meeting with a patient, we also had a group meeting with several students and group facilitators to talk about — and process — the interactions we had with patients. I was assigned a woman who was living with metastatic breast cancer. I was also introduced to the field of palliative care and how it helps patients manage complex symptoms and process and cope with a difficult diagnosis. It also cultivates the understanding to make informed decisions about their care. That’s when I knew what I wanted to do for the rest of my life — figure out ways to integrate these palliative and supportive care concepts and improve the lived experience of patients and families within the oncology setting.
Question: What happened next?
El-Jawahri: When I was a first-year intern, I went to residency at Massachusetts General Hospital. I was on an oncology service and admitted a young college student who was diagnosed with acute myeloid leukemia. She was an athlete, and every time she went up the stairs to her dorm, she was getting very short of breath. She went to a walk-in clinic because when you’re 20 and you’re healthy, you don’t think you need anything. They did some blood work, and 2 hours later, they called her and said, “You probably have leukemia. You need to go to the emergency department immediately.” There she saw an emergency doctor who said, “You will be admitted to the hospital. You have leukemia. I’m calling an oncologist, and you’ll probably have to start chemotherapy within the next day or 2.”
Question: What was that experience like for the patient?
El-Jawahri: I’ve never seen someone so scared. The first question she asked me was about her family, who were from North Carolina. She said, “It feels like everybody thinks that I’m dying. Do you think my family will have time to get here?” They were in a car driving over. This is not a unique story in this population. Unfortunately, these patients experience the most traumatic way of being diagnosed and probably the most traumatic experience in oncology. They’re being abducted into a hospital environment, losing all control and starting immediate therapy. Then, for the first 4-6 weeks, they experience immense toxicity, side effects like nausea, vomiting, diarrhea, and mucositis, where they have painful mouth and throat sores that require intravenous pain medications. This causes real posttraumatic stress. After seeing that woman, I made the decision to work in leukemia and transplants to try to make things a little bit better for these patients.
Question: How did the patient fare?
El-Jawahri: She actually did great and was cured of her disease. Many of our patients with leukemia, especially younger ones, do well in terms of survival. But they struggle with the trauma of their diagnosis and the distress of the acute treatment period. Even in the curative setting, helping patients to cope with a traumatic diagnosis can have a big impact on their quality of life, how they feel, and their long-term outcomes in terms of psychological stress, depression, anxiety, and posttraumatic stress. But so often, our patients with leukemia are not offered palliative care and supportive care because they’re going to be cured.
Question: What is an important lesson from your research into palliative care in hematology?
El-Jawahri: We can make things better for patients and families by integrating palliative care clinicians into the care of patients. Patients receiving palliative care are more likely to document their end-of-life preferences and discuss them with their clinicians, and they’re less likely to be hospitalized at the end of life. When you ask patients with cancer where do they want to die, many of patients say, “I want to die at home. I don’t want to be in a hospital.” A lot of the work I’m doing now is focused on creating digital apps with components of palliative care and supportive care interventions. Patients can administer these interventions to themselves and learn how to effectively cope and deal with their illness. Some patients may do well with a digital app, but others may actually need the in-person touch. Some may need a hybrid approach. One of the other future directions for us is thinking about how we optimize supportive care interventions. Which ones do we give to which patient?
Question: Considering all that you’ve learned since college, how do you think your sick friend should have been treated?
El-Jawahri: She was neither introduced to the term palliative care nor to palliative care specialists. Now the standard of care — especially in patients with advanced cancer — is to integrate palliative care clinicians early in the course of illness. We would have loved for her to have a palliative care clinician who didn’t replace the oncologist but rather helped the patient, family, and oncologist communicate more effectively with one another. We hear all the time from patients who say different things to their oncologist than to their palliative care clinician. It’s not like my friend wasn’t able to communicate with her oncologist. But maybe part of it was that she wanted to not disappoint her oncologist [by ending treatment].
Question: Could you tell me about the research you presented at ASCO 2024 regarding 115 adult patients with acute myeloid leukemia and high-risk myelodysplastic syndrome who were receiving non-intensive chemotherapy?
El-Jawahri: These patients receive therapy that requires frequent clinic visits and often substantially impairs their quality of life. We know this population often does not engage in any timely discussion with their clinicians about their end-of-life care preferences. This multisite randomized clinical trial assigned patients to receive usual oncology care [with palliative care consultations only upon request] vs to see palliative care clinicians monthly in the outpatient setting and twice weekly every time they were hospitalized. The intervention focused on how to help patients manage their symptoms and end-of-life communication in particular. The primary outcome of the study was time from the documentation of end-of-life care preferences to death.
Question: What did you learn?
El-Jawahri: This is one of the first studies to highlight the impact of palliative care integration on end-of-life care preferences and discussions and documentation in this population. Patients receiving the palliative care intervention were much more likely to discuss their end-of-life care preferences [96.5% vs 68.4%; P < .001]. More importantly, those receiving the intervention had a much longer time from documentation of end-of-life care preferences to death. On average, patients in the palliative care intervention group vs the usual care group had a mean of 41 vs 1.5 days from documentation of their preferences to death [P < .001]. In the intervention group, these conversations were happening early enough for patients to plan, talk to their families, and discuss their wishes. In the usual care group, they were happening acutely while these patients were dying. We also learned that patients receiving palliative care intervention were less likely to be hospitalized at the end of life [70.6% vs 91.9%; P = .031] and had better quality of life [138.6 vs 125.5; P = .010].
Question: What’s next for your research in this area?
El-Jawahri: We are doing a large-scale randomized, comparative effectiveness trial of specialty palliative care vs primary palliative care in 11,150 patients with acute myeloid leukemia across 20 institutions in the United States. We expect results in 2028.
Question: What are you hoping to understand?
El-Jawahri: We will never have enough specialty palliative care clinicians to take care of all patients with serious illness. As a result, we have to learn how palliative care works: How does it improve outcomes? How do we potentially take what palliative care clinicians do and try to integrate it into regular oncology practice? A lot of the work that I’m excited about now regards what we call primary palliative care. How do we train oncology clinicians to incorporate palliative care skills in their practices so we’re able to better meet the needs of our patients and their families? What we’d love to understand from future research is which patient populations need specialty palliative care and which patients can do just fine with an oncology clinician who has a lot of good palliative care skills integrated into their practice.
El-Jawahri disclosed consulting for Incyte and Novartis.
Randy Dotinga is an independent writer and board member of the Association of Health Care Journalists.
