Table 2.
—Barriers to Palliative Care
| Survey Question | Not a Barrier at All | Minimal Barrier | Moderate Barrier | Large Barrier | Huge Barrier |
| Patient factors | |||||
| Patient reluctance to use opiates or sedatives for symptom management because of concern about side effects (n = 140) | 20 | 53.6 | 20.7 | 5.7 | 0.0 |
| Patient reluctance to use opiates or sedatives for symptom management because of concern about addiction (n = 141) | 20.6 | 49.6 | 24.8 | 5.0 | 0.0 |
| Unrealistic patient expectations about prognosis or likelihood of survival until transplanta (n = 141) | 4.3 | 29.1 | 37.6 | 27.0 | 2.1 |
| Unrealistic patient expectations about prognosis or survival after transplanta (n = 140) | 7.1 | 29.3 | 45.0 | 15.7 | 2.9 |
| Unwillingness or inability of patients to plan end-of-life carea (n = 141) | 2.1 | 31.2 | 39.0 | 19.9 | 7.8 |
| Disagreements between patients and the transplant team about care goals (n = 139) | 10.8 | 48.2 | 32.4 | 7.9 | 0.7 |
| Refusals by patients to forgo life-sustaining treatments for religious reasons (n = 141) | 32.6 | 58.9 | 6.4 | 1.4 | 0.7 |
| Lack of appropriate support people (n = 141) | 16.3 | 37.6 | 29.1 | 14.9 | 2.1 |
| Concern by patients that they would not receive appropriate medical care once they were enrolled in hospice or palliative care programa (n = 140) | 8.6 | 29.3 | 37.9 | 19.3 | 5.0 |
| Concern by patients that they would be abandoned by the lung transplant team if enrolled in hospice or palliative care programa (n = 140) | 11.4 | 31.4 | 29.3 | 22.9 | 5.0 |
| Family factors | |||||
| Unrealistic family expectations about patient’s prognosis or likelihood of survival until transplanta (n = 138) | 2.9 | 21.0 | 44.2 | 26.1 | 5.8 |
| Unrealistic family expectations about prognosis or survival after transplanta (n = 137) | 5.8 | 23.4 | 46.0 | 19.7 | 5.1 |
| Unwillingness or inability of families to plan end-of-life carea (n = 137) | 3.6 | 21.2 | 45.3 | 26.3 | 3.6 |
| Disagreements within families about care goalsa (n = 136) | 4.4 | 34.6 | 43.4 | 16.2 | 1.5 |
| Disagreements between families and the transplant team about care goals (n = 134) | 6.7 | 44.8 | 38.8 | 8.2 | 1.5 |
| Refusals by families to forgo life-sustaining treatments for religious reasons (n = 137) | 32.1 | 54.7 | 9.5 | 2.9 | 0.7 |
| Institutional, transplant program, and lung allocation system factors | |||||
| Lack of a palliative care service that could evaluate and treat a dying patient (n = 135) | 45.2 | 25.9 | 15.6 | 7.4 | 5.9 |
| Patients on transplant waiting list ineligible for hospice or palliative care (n = 134) | 35.8 | 32.8 | 20.1 | 10.4 | 0.7 |
| Limited reimbursement for care of patient once he/she is in hospice or palliative care program (n = 132) | 53.0 | 29.5 | 12.9 | 3.8 | 0.8 |
| High organ allocation priority for patients supported by mechanical ventilation (n = 130) | 30.8 | 39.2 | 14.6 | 13.8 | 1.5 |
| Insufficient recognition by colleagues or institutional leadership of the importance of optimal end-of-life care (n = 134) | 28.4 | 32.8 | 23.9 | 11.9 | 3.0 |
| Lack of consultants with special expertise in management of symptoms distressing to lung transplant candidates (n = 134) | 39.6 | 26.9 | 19.4 | 9.0 | 5.2 |
| Insufficient involvement of patient’s referring physician after lung transplant listing (n = 133) | 23.3 | 39.1 | 27.1 | 7.5 | 3.0 |
| Insufficient continuity of care within lung transplant program due to staffing patterns (n = 134) | 38.1 | 39.6 | 14.9 | 6.0 | 1.5 |
| Insufficient continuity of care during transition from outpatient to inpatient service (n = 132) | 37.9 | 43.9 | 15.2 | 1.5 | 1.5 |
| Insufficient continuity of care within lung transplant program due to nursing staffing patterns (n = 133) | 39.1 | 39.1 | 15.8 | 4.5 | 1.5 |
| Requirement by transplant program for patient to relocate closer to transplant center (n = 135) | 28.1 | 40.0 | 24.4 | 4.4 | 3.0 |
| Requirement by transplant program for patient to lose or gain weighta (n = 134) | 17.2 | 30.6 | 32.8 | 14.9 | 4.5 |
| Requirement by transplant program for patient to participate in structured exercise program (n = 132) | 23.5 | 37.9 | 28.0 | 9.1 | 1.5 |
| Physician factors | |||||
| Insufficient physician training in communication about end-of-life care issues (n = 129) | 14.0 | 45.0 | 28.7 | 10.9 | 1.6 |
| Insufficient physician training in techniques for forgoing life-sustaining treatment without patient suffering (n = 129) | 15.5 | 48.1 | 24.8 | 8.5 | 3.1 |
| Competing demands for physician timea (n = 128) | 8.6 | 29.7 | 37.5 | 21.1 | 3.1 |
| Limited reimbursement for time spent providing end-of-life care (n = 126) | 32.5 | 39.7 | 18.3 | 7.1 | 2.4 |
| Inadequate communication between transplant team and patient/families about appropriate goals of care (n = 129) | 17.1 | 41.1 | 31.0 | 9.3 | 1.6 |
| Inadequate communication between transplant team and other physicians about appropriate goals of care (n = 129) | 19.4 | 38.0 | 31.8 | 8.5 | 2.3 |
| Inadequate communication within transplant team about appropriate goals of care (n = 128) | 32.8 | 40.6 | 20.3 | 5.5 | 0.8 |
| Fear of legal liability for forgoing life-sustaining treatments (n = 128) | 44.5 | 42.2 | 9.4 | 1.6 | 2.3 |
| Fear of legal liability for administering opioids or sedatives to patients (n = 128) | 53.9 | 39.1 | 3.9 | 2.3 | 0.8 |
| Unrealistic expectations by physicians about patient prognosis for survival to receive transplant (n = 127) | 22.0 | 44.1 | 22.0 | 7.9 | 3.9 |
| Unrealistic expectations by physicians about prognosis or survival after transplant (n = 128) | 25.0 | 39.8 | 26.6 | 6.3 | 2.3 |
| Limited state of the science in treatment of dyspnea (n = 127) | 18.1 | 40.9 | 26.0 | 11.0 | 3.9 |
| Physician reluctance to use opioids or sedatives because of concern about side effects (n = 128) | 30.5 | 38.3 | 20.3 | 8.6 | 2.3 |
| Physician reluctance to use opioids or sedatives because of concern about addiction (n = 128) | 39.8 | 38.3 | 13.3 | 6.3 | 2.3 |
| Psychologic or emotional stresses on transplant physicians as a result of providing care to dying patients (n = 128) | 20.3 | 44.5 | 25.8 | 8.6 | 0.8 |
| Insufficient attention to diverse cultural norms and customs with respect to dying, death, and grief (n = 128) | 16.4 | 50.8 | 27.3 | 5.5 | 0.0 |
| Insufficient transplant physician training in management of symptoms distressing to terminally ill patients (n = 129) | 18.6 | 41.9 | 24.8 | 13.2 | 1.6 |
| Physician difficulty in reconciling seemingly contradictory goals of transplant and palliative carea (n = 127) | 13.4 | 35.4 | 28.3 | 17.3 | 5.5 |
| Belief that patient must have do-not-resuscitate order to be eligible for hospice or palliative care (n = 126) | 31.7 | 34.9 | 23.0 | 5.6 | 4.8 |
| Belief that death of patient is a professional failure for transplant physicians (n = 125) | 33.6 | 41.6 | 15.2 | 8.0 | 1.6 |
| Fear that hospice or palliative care destroys patient’s hope (n = 127) | 26.0 | 32.3 | 22.0 | 15.7 | 3.9 |
| Belief that hospice or palliative care is for the imminently dying (n = 127) | 29.2 | 30.7 | 25.2 | 13.4 | 5.5 |
Data are presented as %.
a
Barriers that were considered significant.