Serious illness conversations in pulmonary hypertension

Abstract

Pulmonary arterial hypertension has evolved from a fatal disease with few treatment options to a chronic condition with improved survival. This improvement is possible through development of effective therapies as well as the expansion of risk stratification scores to assist clinical decision making. Despite improved disease control, quality of life, and overall prognosis, many challenges remain. The treatment itself is burdensome, with significant impact on quality of life. Many patients with pulmonary arterial hypertension still present with advanced, often end-stage disease. Increased use of mechanical circulatory support and catheter-based interventions have expanded use of extracorporeal life support and right ventricle assist devices. For these reasons as well as the long-term relationships pulmonary hypertension physicians have with patients and their families, navigating the course of the illness in a considered, proactive way is essential. Understanding individual goals and revisiting them as they change over time requires comfort with the conversation itself. There are many barriers and challenges to having effective, compassionate conversations in the clinical setting with time constraints being the most often cited. Compressed visits are necessarily focused on the clinical aspects, therapy and medication adherence and tolerance. Clinicians are sometimes wary of diminishing hope in the face of ongoing treatment. Having sufficient experience and comfort with these discussions can be empowering. In this paper we discuss the challenges involved and propose a framework to assist in incorporating these discussions into clinical care.

Patient perspectives on pulmonary hypertension in the United States: Burdens, expectations, and goals

“…However, physicians typically receive very little training in handling these difficult situations. Further guidance is therefore needed to support physicians and other HCPs in effectively communicating the challenges and reality of these treatments and how best to transition to the patient's goals of care 35 . There is also a lack of adequate hospice care at end of life given the high cost of PH medications that are not covered under most hospice programs.…”

“…Further guidance is therefore needed to support physicians and other HCPs in effectively communicating the challenges and reality of these treatments and how best to transition to the patient's goals of care. 35 There is also a lack of adequate hospice care at end of life given the high cost of PH medications that are not covered under most hospice programs. These problems represent a large gap in the care and management of patients with PH.…”

Communication challenges: perioperative risks and care directives

“…In a single-center, quality improvement study, a glass decal communication daily tool improved the ICU team's shared knowledge of the plan, reassured families that the team was working together, and fostered family engagement [7]. Serious illness conversation guides are proving beneficial for communicating uncertainty and facilitating shared decision-making among patients, families, and the medical team [8]. Moynihan et al [9] proposed a structured conversation guide for critical time points during pediatric extracorporeal membrane oxygenation support, including iterative discussions toward decannulation even when the outcome is unclear.…”