Advance Care Planning and Palliative Care Specialists in Malignant Hematology and Stem-Cell Transplantation: On Why It Takes A Village

As a practicing oncologist, I specialize in the care of patients with acute leukemia and myeloid malignancies (eg, myelodysplastic syndromes) or myeloproliferative neoplasms (eg, chronic myeloid leukemia).1 I am also fellowship trained and board certified in palliative medicine. Although my dual training allows me to talk the lingo of both fields as needed and wear whichever cap I strategically need to don for a particular consult or clinic visit, I have come to a difficult realization in my practice: I just cannot do everything for every patient. Although this may seem obvious or trite, it is the crux of the matter with regard to advance care planning and palliative care in malignant hematology. It takes a village to care for these patients well, and a palliative care specialist is a necessary (but often missing) member of the team. A growing yet sobering pattern has emerged from quality and outcomes data in oncology. In short, for any palliative and end-of-life quality measure you can think of, we seem to do worse in malignant hematology than we do in the solid tumor realm. For example, patients with hematologic malignancies are more likely to receive aggressive care at the end of life, die in the hospital, not use hospice care (or have an unacceptably short length of stay on hospice), and receive chemotherapy in their last days.1a-5 Some debate the appropriateness and applicability of these measures to malignant hematology, citing the sometimes dramatic differences in prognosis and differences in intensity of therapy required to potentially cure these diseases, such as stem-cell transplantation (SCT).6-8 And this is precisely the point: There is something fundamentally different about caring for these patients that makes it especially hard to proactively address more difficult, end-of-life care issues such as advance care planning, when one is doing everything possible to achieve a cure. It is sometimes said that an SCT is akin to pushing a patient so close to the edge of the cliff that they hang over the precipice, dangling by a thread that is anchored to the transplant team, and then pulling them back to safety at the last moment with the smallest margin of error. Such an endeavor requires tremendous focus on the part of the clinical team and a remarkable amount of emotional energy on the part of patients and families. Amid such an uphill climb, aimed only at reaching the summit (ie, a cure), who would expend more energy contemplating other outcomes? As such, there is often a complicit silence between us hematologists and our patients to not “go