Colleen K McIlvennan1, Jacqueline Jones2, Larry A Allen1, Keith M Swetz3, Carolyn Nowels4, Daniel D Matlock5. 1. Section of Advanced Heart Failure and Transplantation, Division of Cardiology, University of Colorado School of Medicine, Aurora2Colorado Cardiovascular Outcomes Research Consortium, University of Colorado School of Medicine, Aurora. 2. University of Colorado School of Nursing, Aurora. 3. Birmingham/Atlanta Geriatric Research, Education, and Clinical Center, Department of Veterans Affairs, Birmingham VA Medical Center, Birmingham, Alabama6Center for Palliative and Supportive Care, University of Alabama at Birmingham. 4. Division of General Internal Medicine, University of Colorado School of Medicine, Aurora. 5. Colorado Cardiovascular Outcomes Research Consortium, University of Colorado School of Medicine, Aurora4Division of General Internal Medicine, University of Colorado School of Medicine, Aurora.
Abstract
IMPORTANCE: For patients and their loved ones, decisions regarding the end of life in the setting of chronic progressive illness are among the most complex in health care. Complicating these decisions are increasingly available, invasive, and potentially life-prolonging technologies such as the left ventricular assist device (LVAD). OBJECTIVE: To understand the experience of bereaved caregivers and patients at the end of life who have an LVAD. DESIGN, SETTING, AND PARTICIPANTS: Semistructured, in-depth interviews were conducted between September 10 and November 21, 2014, with 8 bereaved caregivers of patients with an LVAD who were recruited from a single institution. Data were analyzed from December 13, 2014, to February 18, 2015, using a mixed inductive and deductive approach. MAIN OUTCOMES AND MEASURES: Themes from semistructured interviews. RESULTS: The 8 caregivers (6 females) described 3 main themes that coalesced around feelings of confusion in the final weeks with their loved ones: (1) the process of death with an LVAD, (2) the legal and ethically permissible care of patients with an LVAD approaching death, and (3) fragmented integration of palliative and hospice care. CONCLUSIONS AND RELEVANCE: Despite increasing use of LVADs in patients with advanced heart failure, bereaved caregivers of patients with an LVAD describe a high level of confusion at the end of life. There remains a need for the health care community to develop clear guidance on the management of patients with an LVAD at the end of life. Future work will focus on the educational process and the ideal timing and reiteration of such information to patients and families.
IMPORTANCE: For patients and their loved ones, decisions regarding the end of life in the setting of chronic progressive illness are among the most complex in health care. Complicating these decisions are increasingly available, invasive, and potentially life-prolonging technologies such as the left ventricular assist device (LVAD). OBJECTIVE: To understand the experience of bereaved caregivers and patients at the end of life who have an LVAD. DESIGN, SETTING, AND PARTICIPANTS: Semistructured, in-depth interviews were conducted between September 10 and November 21, 2014, with 8 bereaved caregivers of patients with an LVAD who were recruited from a single institution. Data were analyzed from December 13, 2014, to February 18, 2015, using a mixed inductive and deductive approach. MAIN OUTCOMES AND MEASURES: Themes from semistructured interviews. RESULTS: The 8 caregivers (6 females) described 3 main themes that coalesced around feelings of confusion in the final weeks with their loved ones: (1) the process of death with an LVAD, (2) the legal and ethically permissible care of patients with an LVAD approaching death, and (3) fragmented integration of palliative and hospice care. CONCLUSIONS AND RELEVANCE: Despite increasing use of LVADs in patients with advanced heart failure, bereaved caregivers of patients with an LVAD describe a high level of confusion at the end of life. There remains a need for the health care community to develop clear guidance on the management of patients with an LVAD at the end of life. Future work will focus on the educational process and the ideal timing and reiteration of such information to patients and families.
Authors: Robert E Burke; Jacqueline Jones; Emily Lawrence; Amy Ladebue; Roman Ayele; Chelsea Leonard; Brandi Lippmann; Daniel D Matlock; Rebecca Allyn; Ethan Cumbler Journal: J Gen Intern Med Date: 2018-02-09 Impact factor: 5.128
Authors: Brandon P Verdoorn; Angela J Luckhardt; Sara E Wordingham; Shannon M Dunlay; Keith M Swetz Journal: J Pain Symptom Manage Date: 2017-01-16 Impact factor: 3.612
Authors: Megan M Streur; Jonathan P Auld; Ana Carolina Sauer Liberato; Jennifer A Beckman; Claudius Mahr; Elaine A Thompson; Cynthia M Dougherty Journal: J Card Fail Date: 2020-06-05 Impact factor: 5.712
Authors: Laura P Gelfman; Dio Kavalieratos; Winifred G Teuteberg; Anuradha Lala; Nathan E Goldstein Journal: Heart Fail Rev Date: 2017-09 Impact factor: 4.214
Authors: Nisha Bansal; Susan M Hailpern; Ronit Katz; Yoshio N Hall; Manjula Kurella Tamura; William Kreuter; Ann M O'Hare Journal: JAMA Intern Med Date: 2018-02-01 Impact factor: 21.873
Authors: Laura P Gelfman; Marie Bakitas; Lynne Warner Stevenson; James N Kirkpatrick; Nathan E Goldstein Journal: J Palliat Med Date: 2017-05-12 Impact factor: 2.947
Authors: Ann M O'Hare; Jackie Szarka; Lynne V McFarland; Elizabeth K Vig; Rebecca L Sudore; Susan Crowley; Lynn F Reinke; Ranak Trivedi; Janelle S Taylor Journal: Clin J Am Soc Nephrol Date: 2017-03-29 Impact factor: 8.237
Authors: Shannon M Dunlay; Jacob J Strand; Sara E Wordingham; John M Stulak; Angela J Luckhardt; Keith M Swetz Journal: Circ Heart Fail Date: 2016-10 Impact factor: 8.790