title: Barriers to optimal palliative care of lung transplant candidates.
abstract: BACKGROUND
  The provision of effective palliative care is of great importance to patients awaiting lung transplantation. Although the prospect of lung transplantation provides hope to patients and their families, these patients are usually very symptomatic from their underlying disease.
  
  
  METHODS
  An e-mail questionnaire was sent to members of the American College of Chest Physicians' Transplant NetWork and the Pulmonary Council of the International Society for Heart and Lung Transplantation (ISHLT). The survey included questions about barriers to providing palliative care, the availability of palliative care services, and recommended strategies to improve palliative care for lung transplant candidates.
  
  
  RESULTS
  The 158 respondents represented approximately 65% of transplant programs in the ISHLT registry. Respondents were in practice a mean of 11.3 (± 9) years, 70% were pulmonologists, 17% were surgeons, and 13% were other care providers. Barriers were classified into domains including patient factors, family factors, physician factors, and institutional/transplant program/lung allocation system factors. Significant patient/family barriers included unrealistic patient/family expectations about survival, unwillingness to plan end-of-life care, concerns about abandonment or inappropriate care after enrollment in a palliative care program, and family disagreements about care goals. For institutional/program/allocation system barriers, only the requirement for weight loss or gain to meet program-specific BMI requirements was identified. Significant physician barriers included competing time demands and the seemingly contradictory goals of transplant vs palliative care. Strategies recommended to improve palliative care included routine advance care planning for patients awaiting transplantation, access to palliative care specialists, training of transplant physicians in symptom management, and regular meetings among transplant physicians, nurses, patients, and families.
  
  
  CONCLUSIONS
  Physicians providing care to lung transplant candidates reported considerable barriers to the delivery and acceptance of palliative care and identified specific strategies to improve palliative care for lung transplant candidates.
authors.affiliation: Division of Respirology, Department of Medicine, University of Toronto, Toronto, ON, Canada.
authors.forename: Rebecca E
authors.initials: RE
authors.lastname: Colman
authors.affiliation: Division of Pulmonary and Critical Care Medicine, Harborview Medical Center, University of Washington, Seattle, WA.
authors.forename: J Randall
authors.initials: JR
authors.lastname: Curtis
authors.affiliation: Division of Pulmonary, Critical Care, and Sleep Medicine and the Hertzberg Palliative Care Institute, New York, NY.
authors.forename: Judith E
authors.initials: JE
authors.lastname: Nelson
authors.affiliation: Department of Medicine, South Nassau Communities Hospital, Oceanside, NY.
authors.forename: Linda
authors.initials: L
authors.lastname: Efferen
authors.affiliation: Division of Pulmonary and Critical Care Medicine, University of Pennsylvania School of Medicine, Philadelphia, PA.
authors.forename: Denis
authors.initials: D
authors.lastname: Hadjiliadis
authors.affiliation: Division of Pulmonary and Critical Care Medicine and CT Surgery, University of Texas Heath Center, San Antonio, TX.
authors.forename: Deborah J
authors.initials: DJ
authors.lastname: Levine
authors.affiliation: Department of Medicine, University of Wisconsin School of Medicine and Public Health, Madison, WI.
authors.forename: Keith C
authors.initials: KC
authors.lastname: Meyer
authors.affiliation: Department of Medicine, Mount Sinai School of Medicine, New York, NY.
authors.forename: Maria
authors.initials: M
authors.lastname: Padilla
authors.affiliation: Section of Pulmonary and Critical Care Medicine, Department of Medicine, University of Chicago, Chicago IL.
authors.forename: Mary
authors.initials: M
authors.lastname: Strek
authors.affiliation: Division of Pulmonary and Critical Care Medicine, Department of Medicine, Medical College of Wisconsin, Milwaukee, WI.
authors.forename: Basil
authors.initials: B
authors.lastname: Varkey
authors.affiliation: Division of Respirology, Department of Medicine, University of Toronto, Toronto, ON, Canada; Toronto Lung Transplant Program, University Health Network, Toronto, ON, Canada. Electronic address: lianne.singer@uhn.ca.
authors.forename: Lianne G
authors.initials: LG
authors.lastname: Singer
mesh_terms: D000328:Adult; D032722:Advance Care Planning; D003657:Decision Making; D005260:Female; D019538:Health Care Surveys; D006297:Health Services Accessibility; D006801:Humans; D016040:Lung Transplantation; D008297:Male; D008875:Middle Aged; D010166:Palliative Care / Q000592:standards; D057234:Preoperative Period; D011788:Quality of Life; D013727:Terminal Care