Challenge of Informing Patient Decision Making
What Can We Tell Patients Considering Long-Term Mechanical Circulatory Support About Outcomes, Daily Life, and End-of-Life Issues?
In the management of advanced heart failure, the option of long-term mechanical circulatory support (MCS) as destination therapy (DT), rather than as a temporary bridge to cardiac transplantation, is increasingly being offered to highly selected patients. Recent technological advancements in implantable devices, such as continuous flow systems and smaller pump sizes, have increased the possibility of survival with fewer complications. Informed consent before MCS is essential1–6 and is a fundamental aspect of patient-centered care. As a part of a quality decision-making process, the patient considering MCS and his/her informal caregiver(s) need to be aware of the current state of the scientific evidence, including what is known and unknown about outcomes and living with MCS and must navigate a series of interactions with clinicians before deciding on the treatment course.
Editorial see p 13
The Institut National d’Excellence en Santé et en Services Sociaux is a health technology assessment and clinical guideline development organization in the province of Quebec (Canada) that provides multiple stakeholders (ie, government officials, hospital administrators, physicians, and patient organizations) with evidence-based information. In 2011, the Quebec Ministry of Health requested that the Institut National d’Excellence en Santé et en Services Sociaux provide recommendations on the use of implantable left ventricular assist devices in end-stage chronic heart failure. The current article extends the work submitted to the Ministry1 and focuses on MCS use in DT, within the framework of informed decision making.
In this perspective piece, we report on our review of the scientific literature concerning clinical outcomes in DT and on perspectives of DT patients and their caregivers, to provide a summary of currently available information and identify gaps in knowledge. Besides the use of MCS as a bridge to transplantation, we do not consider in this perspective the other clinical recourses to …