Background The total artificial heart (TAH) is an implanted device approved as a modality to stabilize patients with severe biventricular heart failure or persistent ventricular arrhythmias for evaluation and bridge to transplantation. According to the Interagency Registry for Mechanically Assisted Circulatory Support (INTERMACS), about 450 patients received a TAH between 2006 and 2018. Patients being evaluated for a TAH are often critically ill and a TAH offers the best chance at survival. Given the prognostic uncertainty of these patients, there is a crucial need for preparedness planning to help patients and their caregivers plan for living and supporting a loved one with a TAH.
Aim To describe an approach to preparedness planning and highlight the importance of palliative care.
Methods We reviewed the current needs and approaches to preparedness planning for a TAH. We categorized our findings and suggest a guide to maximize conversations with patients and their decision makers.
Results We identified four critical areas to address: the decision maker, minimal acceptable outcome/maximal acceptable burden, living with the device, and dying with the device. We suggest using a framework of mental and physical outcomes and locations of care as a way to identify minimal acceptable outcome and maximal acceptable burden.
Conclusion Decision making for a TAH is complex. There is an urgency and patients do not always have capacity. Identifying legal decision makers and social support is critical. The surrogate decision makers should be included in preparedness planning including discussions about end-of-life care and treatment discontinuation. Having palliative care as members of the interdisciplinary mechanical circulatory support team can assist in these preparedness conversations.
- supportive care
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Contributors TAB conceived the idea. BCL, BAW, NAM and TAB designed the manuscript. ES and LJR substantially revised the manuscript. All authors have reviewed the article critically for clarity and intellectual content, provided revisions and have approved this version for submission.
Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.
Competing interests BCL is an unpaid member of the Finance Committee with the International Society of Heart and Lung Transplantation. NAM is the Site Prinicpal Investigator for the EXACT trial with Xylocor. He also receives consulting fees through Medtronic, Abbott, SynCardia, Carmat and Xylocor. He serves on the Clinical Events Committee for Carmat, DSBM-Prevent II for Abott and Medical Advisory Board for Xylocor. He holds the following patents: (USPTO 17/184,781) Prevention and Treatment of Viral Infection and Viral Infection-Induced Organ Failure, filing date 25 February 2021 and (USPTO 63/240,253) Devices and Methods for Left Atrial Appendage Occlusion, filing date 2 September 2022. TAB has a role with the American Academy of Hospice and Palliative Medicine Finance Committee and holds stock options with Perfect Health (ConcertoCare).
Provenance and peer review Not commissioned; internally peer reviewed.
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