Jones, Jacqueline

BACKGROUND: Destination therapy left ventricular assist device (DT LVAD) is increasingly offered to patients with end-stage heart failure who are ineligible for heart transplantation. Implanting centers often require the identification of a dedicated caregiver prior to DT LVAD implantation; however, the caregiver experience surrounding this difficult decision is relatively unexplored. METHODS: Between October 2012 and July 2013, we conducted semi-structured, in-depth interviews of caregivers to understand their experiences with decision making for loved ones considering and living with DT LVADs. Data were analyzed using a mixed inductive and deductive approach. RESULTS: We interviewed 17 caregivers: 16 caregivers of patients who had received a DT LVAD and 1 caregiver of a patient who had declined a DT LVAD. At the time of the caregiver interview, 10 DT LVAD patients were living and 7 were deceased. The majority were women (n=16) of whom 12 were either spouses or widows of the patients. Median age of caregivers was 65 (range 35-79). Twelve caregivers reported spending more than 8 hours per week caring for their loved one, and 14 attended regular medical appointments. Throughout the interviews, caregivers reported that DT LVAD was a complex decision making process with many inherent tensions. The themes identified are broadly interpreted under three domains: 1) the stark decision context with tension between hopes and realities, “when we first started out¼we had hopes of a transplant¼but once the lung function was done, and the kidneys ¼there was pretty much nothing. There was no hope other than the LVAD”; 2) the challenging decision process and the tension between wanting their loved ones to live, “I said ‘Well, I'll tell you what. I didn't marry you to be a young widow” and wanting to respect their loved ones’ wishes, “My thoughts were this was his life and it was his choice”; and 3) the downstream decision outcome and the tension between gratitude, “I'm just thankful to have my dad here¼” and a feeling of burden, “I've never felt caregiver was my gift¼I tend to feel like I'm being imposed upon at times.” CONCLUSIONS: Despite the promise of significantly improved survival for some patients, DT LVAD has major implications for caregives as well as patients. Decision making surrounding DT LVAD requires education of both the patient and caregiver of potential stresses. Additionally, decision-making surrounding DT LVAD should seek to incorporate decision support for patients and caregivers. This should include a focus on caregiver burden and the tensions that caregivers may experience.

Background: Destination therapy left ventricular assist devices (DT-LVADs) have become a treatment option for carefully selected patients with end-stage heart failure. Death is inevitable despite DT-LVAD, with 1-year mortality approximately 20% and median survival 5 years. However, end-of-life processes for LVAD patients vary significantly by institution, provider, and patient preference. Palliative care has played an increasing role in the care of this patient population, yet there remains little data on the most effective way to integrate palliative care and hospice in the DT-LVAD population. Therefore, we aimed to understand the end-of-life perspectives regarding LVADs among both cardiology and palliative care/hospice providers. Methods: Using internet-based, secure methods, we administered a 41-item survey via electronic mail to members of the American Academy of Hospice and Palliative Medicine, European Society of Cardiology-Heart Failure Association, the International Society for Heart and Lung Transplantation, and the Heart Failure Society of America to assess their perspectives on end-of-life care in patients with LVADs. Descriptive statistics were used to analyze data. Fisher’s exact test was used to compare categorical data. Results: From October to November 2011, there were a total of 440 respondents (palliative care/hospice=137; cardiology=303). Most were physicians (80%; n=320) and male (59%; n=232). The majority of providers in both groups viewed an LVAD as a life-sustaining treatment. The groups differed in their attitudes, beliefs, and comfort with end-of-life care in patients with an LVAD. Few palliative care/hospice providers believed a patient needed to be imminently dying to turn off an LVAD; whereas most cardiology providers noted patients should be imminently dying in order to consider LVAD deactivation (2% vs 60%; p=<0.001). Most palliative care/hospice providers believed requests for turning off an LVAD in a patient who is not nearing death should be honored. In contrast, just over half of cardiology providers contended the request should be honored (88% vs 57%; p=<0.001). The provider groups also disagreed on requiring ethics consultation, with most cardiology providers stating it was necessary prior to turning off an LVAD near the end of life (67% vs 24%; p=<0.001). Conclusion: Cardiology providers and palliative care/hospice providers collectively have different perceptions on management of end of life in patients with an LVAD. Bridging the gaps between these two disciplines is a critical first step in creating a more cohesive approach to end-of-life care for these patients—one that honors autonomy but respects individual provider comfort levels.

Background— Implanting centers often require the identification of a dedicated caregiver before destination therapy left ventricular assist device (DT LVAD) implantation; however, the caregiver experience surrounding this difficult decision is relatively unexplored. Methods and Results— From October 2012 through July 2013, we conducted semistructured, in-depth interviews with caregivers of patients considering DT LVAD. Data were analyzed using a mixed inductive and deductive approach. We interviewed 17 caregivers: 10 caregivers of patients living with DT LVAD, 6 caregivers of patients who had died with DT LVAD, and 1 caregiver of a patient who had declined DT LVAD. The themes identified, which could also be considered dialectical tensions, are broadly interpreted under 3 domains mapping to decision context, process, and outcome: (1) the stark decision context, with tension between hope and reality; (2) the challenging decision process, with tension between wanting loved ones to live and wanting to respect loved ones’ wishes; and (3) the downstream decision outcome, with tension between gratitude and burden. Conclusions— Decision-making surrounding DT LVAD should incorporate decision support for patients and caregivers. This should include a focus on caregiver burden and the predictable tensions that caregivers experience.