The Palliative Care Needs of Lung Transplant Candidates

Abstract

Palliative care (PC) has been shown to improve outcomes for seriously ill patients but has not been fully integrated into the care of lung transplant patients. Little is known about the palliative care needs for this population. Our goal was to describe adult lung transplant candidates' perspectives of their PC needs. Prospective, cross-sectional study; Pre-lung transplant patients from a large, single-center adult lung transplant program between February and October 2019, rated their PC needs using an adapted version of the Needs at the End-of-Life Screening Tool (NEST- 13). Each item was scored on a 10-point scale with higher scores indicating greater needs. The sample included 113 lung transplant candidates. Most (66.3%) were undergoing evaluation, 18.4% were waitlisted, and 15.3% had completed evaluation testing but were not yet listed. Almost 74% of the participants undergoing pre-transplant evaluation were outpatient and 26.2% were inpatients. Participants were predominantly middle-aged (mean: 55.5 years, SD:13.6), Caucasian (83.0%) and female (58.0%). The highest-rated PC needs were "difficulty being as physically active as you would like" (mean= 7.9; SD= 2.5), "suffer from physical symptoms" (mean= 7.4; SD= 2.5), "have to miss or cut back on work due to your illness" (mean=6.2; SD= 3.2), "distressed by the thought your life might end" (mean=5.1; SD= 3.6), and "difficulty preparing family and friends for possibility of losing you" (mean= 4.8; SD= 3.8). Psychiatric symptoms were not rated as a significant need. Participants reported that spirituality is important but did not report difficulty meeting this need. Only 7.1% reported seeing a PC specialist and many (48.2%) were unsure what a PC specialist is. Despite concerns regarding end-of-life, 60.7% indicated that they had not discussed their views on death and dying with their health care team. Lung transplant candidates have significant PC needs, particularly related to their physical symptoms, restrictions on their daily activities, and end-of-life concerns. More research is needed to test the effectiveness of PC in meeting the physical and psychosocial needs of lung transplant patients and to examine the most effective approaches for integrating PC into regular, ongoing lung transplant care.