Hematologists' Approach to Discussing Older Patients' Values in the Context of Allogeneic Hematopoietic Cell Transplantation

Introduction: Although older adults with myeloid cancers make up >40% of patients who undergo curative-intent allogeneic hematopoietic cell transplantation (alloHCT) in the United States, fewer than 40% remain alive two years post-alloHCT. AlloHCT also affects other outcomes important to older adults, including quality of life (QOL). Shared decision-making in alloHCT involves elicitation and incorporation of patients’ values into the decision-making process, but the approaches hematologists use to do this have not been evaluated. We characterize how hematologists discuss values with older patients referred for consideration of alloHCT.

Methods: We recruited hematologists who routinely perform alloHCT in the US through email. Participants conducted a video-recorded virtual encounter lasting up to one hour with actors portraying the same case of a 67-year-old man with recently diagnosed high risk myelodysplastic syndrome referred for specialty hematology consultation to discuss treatment options including alloHCT. The character’s values were defined and focused on spending time with family and preserving QOL. We coded transcribed encounters for how hematologists brought up discussions about patient values and how they responded to patient value-related statements, questions, and concerns.

Results: Hematologists (n=37) from 25 institutions were a median age of 44 years (range 33-73 years) and mostly male (65%) and white (65%). Most spent >50% of their clinical time in caring for patients undergoing alloHCT.

Almost all hematologists (34 of 37; 91.9%) addressed value-related topics; overall, a total of 79 value-related elements were discussed. Value-related topics most often occurred when discussing 1) treatment options and the decision for/against transplant (n=38/79, 48.1%) or 2) transplant details (n=30/79, 38.0%). Most conversation about values involved a single speech turn between hematologist and patient comprised of a question/answer or statement/response without further dialogue (n=66/79, 83.5%).

A total of 23 hematologists (62.1%) initiated dialogue about patient values in 31 of the 79 (39.2%) instances; the patient brought up the remainder of value-related topics. Hematologists often brought up the idea that decision making depended on patient values, e.g. “This [alloHCT] is a treatment that I emphasize mostly for people who value [] a prolonging [] life procedure rather than, well, you know, ‘I just want to have a good life and, you know, be free of symptoms.’” Some described the impact of treatment on patient QOL, while a few proposed the patient shared their values related to survival and QOL: “I would like the rest of your life to be a long time. And I hope, I imagine, you would hope the same.” Among instances of hematologist-initiated dialogue, fewer than 1/3 explored the individual patient’s values: “I just want to understand from your point of view how the disease is affecting your life.”

Meanwhile, of the 79 value-related topics, 61 (77.2%) involved the patient expressing a value in the form of a statement, question, or concern. Hematologists most commonly responded to the patient’s value-related topic by addressing other issues also contained within the patient’s speech turn (n=33/61, 54.1%). Hematologists infrequently directly addressed the patient’s value by acknowledging (n=15/61, 24.6%) or exploring it in greater depth (n=4/61, 6.6%): “I'm hearing that you're frustrated. You have a lot to live for and a lot of plans, and the condition is really changing your ability to realize those plans... If you were to really identify what the most important goals are in terms of what we want to accomplish, [] how would you state those goals?”

Of the 4 hematologists who explored the patient’s goals more deeply, all encouraged the patient to take time to think about the decision while supporting the path of transplant. One recommended that the patient pursue chemotherapy without transplant.

Conclusions: Given alloHCT’s potential to cure, it is tempting to expect that all patients with myeloid cancers referred for transplant wish to pursue this curative option. We observed that hematologists commonly highlight in general terms the importance of patient values and depict how QOL may be impacted by treatments. However, deeper engagement with individual patient values is infrequent and may result in a greater appreciation of patients’ perspectives and influence decision making.