Advance Care Planning in Hematopoietic Stem Cell Transplant Recipients: A Survey of Providers in a Blood & Marrow Transplant Program

Abstract

Advance care planning (ACP) includes having conversations with loved ones and health care providers regarding health care wishes in various circumstances. It also includes completing advance directives such as a health care power of attorney and living will as well as preparing a will for finances and estate planning. This process helps patients make plans for their future health care goals and is particularly useful when they are unable to make their own medical decisions. ACP in hematopoietic stem-cell transplant (HSCT) recipients can be particularly challenging, given the treatment's significant morbidity and mortality yet curative potential. (Wang, W. S. et al, 2017). Recognizing this challenge, the Cleveland Clinic Blood and Marrow Transplant Program created a multi-disciplinary committee of social workers, physicians, advanced practice providers (APPs), nurse coordinators and nurses to address the gap in ACP for HSCT recipients to improve the overall quality of care provided to patients and families. As part of this initiative, we created a survey to assess perceptions of ACP within the program and comfort level. A confidential, fourteen question survey was created and administered to providers. The survey included questions on: 1) perceptions of the current approach to ACP in our program, 2)the comfort level of the provider in discussing goals of care, prognosis, and code status, 3) provider's current knowledge base and prior training. Open-ended feedback was also elicited. A total of 38 responded to the survey including 15 physicians, 7 APPs, 8 nurse coordinators, 3 social workers, and 3 inpatient nurses. The years of experience ranged from 0.5 to 21 plus years. The majority of providers felt our current approach to ACP was very good (n=11) or good (n=16). While the perception was overall favorable, less than half of the providers (n=14) felt we had adequate training to have goals of care discussions. Only 7 providers report having formal training in goals of care. Despite not having formal training, nearly all (n=37) thought it was important. The survey also assessed comfort level of initiating goals of care discussions, prognosis, and code status. The majority of providers reported feeling comfortable in all these areas: initiating goals of care n=25 (Figure 1), prognosis n=20 (Figure 2), and code status n=22 (Figure 3). Of the 21 who were comfortable initiating goals of care discussions 21 reported initiating these conversations in their clinical practice. Many providers (n= 37) also felt it was appropriate for all members of the team to initiate these discussions. ACP is an important part of HSCT multi-disciplinary care of patients and their families. This survey demonstrates our institution's perceptions of ACP, need for formal training to improve comfort levels, and highlights the need for ACP in HSCT to be approached by a multi-disciplinary team effort.