Aligning Palliative Care with Cure: Experience of Integrating with Hematopoietic Stem Cell Transplant

Operational Framework

As patients were undergoing evaluation for transplant by the HSCT coordinators in the outpatient clinic, they were educated about the inpatient PC service that would be taking care of their symptom management needs and clarifying goals of treatment during their hospitalization. Patients received an advance directive and were encouraged to complete it before hospitalization. All patients admitted to the hospital by the HSCT service automatically received a referral to the PC service, as the consult request was part of the standard admission order set.

The PC team followed patients throughout the course of their hospitalization, whether on the HSCT unit or in the ICU. Discussions about goals of care took place upon admission, with review of advance directives to confirm accurate completion of the document and thorough understanding of its contents. Patients surrogate decision maker and other individuals per their preference participated in the conversation. The outpatient HSCT coordinators visited the patients in the inpatient setting to provide continuity of care.

All patients were screened for baseline symptoms upon admission and were seen daily for thorough physiological assessment. Symptoms were managed aggressively to ensure patient comfort as they were pursuing high intensity treatments, mostly with the goal of achieving cure. Goals of treatment were reassessed if there were any major changes in patient status.

The initial concern was that the introduction of the PC service to patients and their families would be met with resistance and cause anxiety. The clinical team members were informed on how to message the benefits of the service, with the focus being on managing their symptoms, honoring their wishes, and providing psychosocial, emotional, and spiritual support.

Clinical Observations

Often, patients were symptom free at baseline and involvement of the PC team helped build rapport before chemotherapy started and symptoms developed. Patients underreported symptoms to the HSCT specialists when compared with the PC clinicians. They primarily focused on their clinical progress and laboratory tests related to their blood counts when they interacted with the HSCT team members. As observed by both teams, symptoms were better controlled. Many patients reported intravenous ondansetron ordered as 4 mg every four hours lost its effect within two to three hours. They were put on an intravenous ondansetron drip at 1 mg per hour and they found it to be more effective. These patients received routine monitoring for QT prolongation. Per the HSCT team, this was a “game changer” for their patients.

The PC team provided continuity when physicians on the HSCT service switched services. Interestingly, if the patient's condition declined necessitating end-of-life decisions, the surrogate decision makers often deferred to their PC physician. This was truly indicative of their trust in the PC physicians understanding of the upfront conversation about the patient's wishes. Our hypothesis is that although the surrogate knew of the patient's wishes, they did not want to carry the burden of making the final decisions. Implementation of new decisions never took place without the approval of the surrogate decision maker.

Operational Observations

No patient/family expressed concerns about receiving care from the PC team as they accepted the service as providing welcomed additional support. We conducted a survey in a small sample of patients at discharge, and they all reported that the timing of involvement of the PC service upon admission was “just right.” A palpable decrease in burnout of PC team members occurred. A substantial number of patients on the service were getting better and discharged, boosting the team's morale. There was an increase in productivity of the team as early involvement helped to avert crises.

Involving the PC team early in all of the patient's care benefits the HSCT team by providing consistency of care across all of their patients. It provides a broad armamentarium of PC strategies, some that are commonly used in other patient specialties. It also promotes a close working relationship between the PC and HSCT services and its team members.

This experience enhanced collaboration between HSCT and PC services. The PC team received invitations to participate in the weekly HSCT patient progress review and the annual survivorship celebration. There was a culture change in perception of the PC service in the hospital. It was no longer associated with being an end-of-life service. This led to the expansion of services into other programs such as the heart transplant program.

We conclude from this experience that PC is an essential part of curative care to ensure patient comfort that should not be limited in scope by diagnosis, prognosis, or treatment plan. We hope that by sharing this experience, it will promote early involvement of PC for all patients undergoing complex medical treatments.