Creating a Palliative Educational Session for Hematopoietic Stem Cell Transplantation Recipients at Relapse

Although the mortality rate after HCT has improved substantially within the last 20 years, mortality is still substantial. The one year survival rate after transplantation remains approximately 60-70%, up from 20-30% in the 1970’s (Horowitz, 2004). Relapse after transplant with progression to end-of-life care is unfortunately a reality for 30-50% of the patients (Negrin, 2006; van den Brink, et al., 2010). Only one article was found that addressed educational needs of transplant patients at end-of-life care post relapse (Yoon, Conway & McMillan, 2006). There are however a few articles which address educational and palliative care concerns at end-of-life from the ICU, hematology and advanced cancer populations. Relapse is a stressful event for patients and families. Vital education and communication by health care professionals to the patients and family may decrease psychological distress. Effective educational strategies to assist HCT patients and families through the relapse phase have been identified (Yoon, Conway, & McMillan, 2006). These included using one and one teaching from a health care professional, using psychological approaches, encouraging MD involvement, maximizing the use of the internet, and facilitating professional’s one-on-one partnerships with the patient and family (Yoon, et al., 2006). Lautrette et al, (2007) discussed the need for close communication with the relatives of patients dying in the intensive care unit. (Lautrette, et al., 2007). This study concluded that proactive communication with the family and literature support may lessen the burden of bereavement (Lautrette, et al., 2007). Bowman et al, (2009) promoted the use of a tailored communication intervention for families of patients with advanced cancer in hopes of affecting quality of life outcomes for caregivers of advanced cancer patients (Bowman, 2009). Rolland (2005) in his article on cancer and the family discussed the terminal phase of illness and listed tasks as 1) completing the process of anticipatory grief and unresolved family issues, 2) supporting the terminally-ill member, 3) helping survivors and dying member live as fully as possible with time remaining, and 4) beginning the family reorganization process (Rolland, 2005). Manitta et al (2010) in an eloquent article titled “Palliative care and the hemato-oncological patient: Can we live together? A Review of the Literature” discusses the challenges of why hematology patients less frequently access the palliative care team services (Manitta, Philip, & Cole-Sinclair, 2010). Although the article does not focus specifically on the transplant population but rather the hematology patient in general the barriers for access to palliative are worthy of consideration, and applicable to the transplant patient. Barriers included: 1) the variability of the illness trajectory with acute exacerbations needing highly technical therapies, 2) unpredictability of prognostication, 3) unclear goals of care; 4) the focus on cure precludes palliative care, 5) lack of knowledge of palliative care, and 6) the complex structure of the healthcare system. This lack of literature discussing educational and palliative care needs for transplant patients at relapse may be related to the goal for transplant being cure not control. Nonetheless, a relapse can be devastating and unexpected. An organized evidence-based approach to assist these patients can be very beneficial for staff, patients and families. This paper will present an evidence-based palliative care/ educational intervention for relapsed allogeneic transplant patients and will discuss its application by the use of case studies based on compilation of actual cases.