End-of-Life Care: A Vital Practice for Every Hematologist Free

“Death comes for all of us,” Anna L. Parks, MD, said in a preview of her session, “Hematologic Challenges at the End of Life,” featured in this year’s Education Program at the 66th American Society of Hematology Annual Meeting and Exposition. While hematologists tend to have a high degree of sub-specialization, all practitioners navigate both the challenge of caring for patients at the end of life and the privilege of providing evidence-based, compassionate care.

Dr. Parks, who chairs the session and is an assistant professor in the Division of Hematology and Hematologic Malignancies at the University of Utah and faculty member of the Center on Aging, will present alongside Kah Poh (Melissa) Loh, BMedSci, MBBCh, BAO, MS, and Emily Johnston, MD, MS, on the growing multidisciplinary evidence base to support treatment decision-making at the end of life. Dr. Loh, who is an assistant professor of geriatric oncology and malignant hematology at the University of Rochester in New York, will address “Challenges in Hospice and End-of-Life Care in the Transfusion-Dependent Patient”; Dr. Johnston, an assistant professor in the Division of Pediatric Hematology-Oncology at the University of Alabama at Birmingham, will discuss “End of Life in the Sickle Cell Patient: Life Expectancy and the Role of Palliative Care”; and Dr. Parks will address “Anticoagulation at the End of Life: Whether, When, and How to Treat.”

Here, Dr. Parks previews the session.

Anna L. Parks, MD

Why is this topic so important, and who would you recommend attend?

As hematologists, we get to know our patients in a way that many other clinicians don’t, and we have an in-depth knowledge of their diseases, so we are uniquely positioned to help people in this transition. There is a burgeoning scientific evidence base in the field of end-of-life care, and we want to make sure that clinicians are expecting to provide end-of-life care and that they are prepared with the skills to tackle these issues with patients.

Of course, these issues extend to all hematologic diseases. Because we’re helping people live longer, many people are going to die with their hematologic disease rather than from it, so this session applies to anybody who’s caring for patients with blood diseases.

Additionally, we’ll be talking about a great deal of different research and techniques, ranging from qualitative research to clinical trials to observational research. There’s a lot of different types of evidence too, which I think anyone who finds evidence fun and interesting will find valuable when they attend.

What challenges do you encounter when caring for patients with transfusion-dependent hematologic malig-nan-cies at the end of life, and how will Dr. Loh address them?

Hospice brings a lot of benefits to patients who are nearing the end of life in terms of helping them manage symptoms, but one important way to manage symptoms is to be able to access transfusions, and often those two are in conflict. Dr. Loh will talk about the challenges and barriers to helping promote quality of life in our patients, including this lack of access.

Also, we have innovative therapies that have the potential to prolong life, but sometimes they don’t, and it can be difficult to prognosticate in this day and age. Dr. Loh will talk about some ways to communicate this uncertainty in prognosis. She will also discuss the ideal timing of palliative care, review clinical trials of different palliative care strategies, and explore ways to incorporate them in our own practice.

How will Dr. Johnston address the communication and systemic-related obstacles physicians face when caring for patients with sickle cell disease (SCD)?

First, there’s a lot of distrust in the SCD population because of the trauma of this chronic disease that can impede the therapeutic relationship. Dr. Johnston will talk about using evidence-based communication strategies to acknowledge that distrust, reestablishing a relationship that allows for care that’s focused on people’s goals, and ultimately matching patients with available care. She will also address some of the more delicate aspects of this work, like faith-based traditions and cultural expectations, that might influence people’s decision-making.

Second, people with SCD are not as often dying of acute complications, but as they’re living longer, they are subject to dying from more chronic complications. Dr. Johnston will address how this presents a big challenge because it has really reshaped the care of patients.

Can you explain the challenges you face when caring for patients at the end of life who are on anticoagulants and the benefit of outlining an approach based on patients’ values?

Many of the guidelines assume that the same strategy applies to both a young healthy person who’s taking a blood thinner and to a person who has less than a year to live, and that’s just not the case. There is a growing evidence base that suggests that as people approach the end of life, the benefits of blood thinners are a little less clear, and the risks increase. It’s important to reassess at each timepoint and think about the best strategy. For some people, that will mean stopping anticoagulants, and that’s something I’ll discuss in the session: how to do that in a way that is safe and effective.

Moreover, as people approach the end of life, their priorities change. I began this work in end-of-life care because I encountered a lot of situations where it felt like patients and families were struggling with knowing what the right thing to do was, when, in fact, the right thing [for me] to do was to follow their lead. This can be hard when it conflicts with what the textbook says, so what this scientific area brings is an evidence-based way to honor patients’ priorities.

Having evidence-based guidance also helps clinicians: It’s much more satisfying — and obviously much more important — to provide care that is patient-​centered, which is what all of us want to do.

What do you hope attendees will take away from this session?

First, I hope that when clinicians are looking at their patient panel, they’ll acknowledge that a number of their patients may have limited life expectancy, and it’s never too early to think about reshaping patient care to meet patient goals.

Second, I hope attendees will come away with some practical, evidence-based strategies that have been proven in rigorous studies to be useful in caring for patients with these diseases.

Finally, I’d like to emphasize that there really is not enough research and support for research in this area, even though it’s incredibly common and important. I’d like attendees to leave thinking about ways to further implement or integrate this area into their own practice.