The Transplant Palliative Care Clinic: An early palliative care model for patients in a transplant program

Abstract

Although patients within a transplant program are awaiting or have received disease modifying or curative treatment, they are also facing advanced illness and the possibility of death. The involvement of specialized palliative care services for these patients may improve symptom management and facilitate advance care planning. However, patients in organ transplantation programs have difficulty accessing palliative care resources and often do so only sporadically in the inpatient setting. Currently, there is little access to ambulatory palliative care for these patients and there have been no descriptions of programs delivering such care in the medical literature. We outline the development and structure of a Transplant Palliative Care Clinic within the University Health Network's Multi-Organ Transplant Program, in Toronto, Canada. This information may be helpful for others aiming to provide early, integrated palliative care to patients awaiting and receiving organ transplantation.

Models of Palliative Care Delivery for Individuals with Cystic Fibrosis: Cystic Fibrosis Foundation Evidence-Informed Consensus Guidelines

“…Specific indications for when SPC may be beneficial include, but are not limited to: the presence of complex or intractable symptoms; existential or spiritual distress; family conflict regarding goals of care; during the transplant evaluation process; and when illness is advanced or death is perceived to be soon. 50,51 Furthermore, the involvement of palliative care specialists may enhance the confidence and competence of CF care teams to provide PPC. 25 Recommendation 7: The CFF recommends SPC consultation when an individual with CF is considering or declines transplantation.…”

“…Currently, SPC is rarely involved in the care of patients undergoing the lung transplantation process, 35,52 and when it is, patients often present with greater illness burden and disability compared with cancer patients also referred for SPC. 50 Welldocumented barriers impede the use of SPC, including patient and clinician difficulties with acceptance of prognosis, clinician fears of demoralizing patients, fears regarding abandonment, unrealistic patient and family expectations regarding survival, and family conflict regarding goals of care. 44 Addressing the last two barriers are among SPC's strongest contributions to clinical care.…”

“…53 Beyond providing valuable support to families and CF care teams in the decisionmaking process, 29 SPC services may be helpful in improving or stabilizing the complex symptom burden to be expected at the point of transplant decisions. 50 As such, regardless of the decision to undergo or decline transplantation, SPC can assist CF care teams in optimizing QoL for individuals with CF and their families at this difficult milestone.…”

State of the Science of Palliative Care in Solid Organ Transplantation

“…Eleven articles [18][19][20][21][22][23][24][25][26][27][28] described patient experiences exclusively pretransplant. One article, 29 a retrospective chart review, described care at a clinic that provides specialty palliative care for general transplant patients, but 87% of the patients included in the review were pretransplant so this article was categorized into studies focused on pretransplant patients, thus 12 articles [18][19][20][21][22][23][24][25][26][27][28][29] were categorized as being pretransplant focused. All five [22][23][24][25][26] of the included randomized controlled trials (RCTs), and two 19,21 of the quasi-experimental studies, examined exclusively pretransplant patient experiences.…”

“…Nine articles 11,12,15,16,22,24,25,27,28 described lung transplantation, five articles 13,14,19,21,23 described liver transplantation, two articles 10,18 described heart transplantation, and one article 26 described kidney transplantation. The remaining three articles 17,20,29 focused on solid organ transplantation in general.…”