Exploring Palliative Planning for Device Patients: A Need for Patient Defined Criteria for Discontinuation of Support

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• 作者：A.M. Knapstein¹ ; C. Wiencek² ; P.J. Coyne² ; S.C. Harton¹ ; R.A. Volman¹ ; D. Norieka² ; E. Del Fabbro² ; M.S Smallfield¹ ; K.B. Shah¹
• 刊名：The Journal of Heart and Lung Transplantation
• 出版年：2013
• 出版时间：April, 2013
• 年：2013
• 卷：32
• 期：4_supp_S
• 页码：S125-S126
• 全文大小：263 K

文摘

Purpose

With the proliferation of LVAD therapy, the emphasis and publication burden has focused on outcomes, patient selection and medical success. There are few guidelines on addressing the palliative, emotional and caregiver needs associated with LVAD therapy. We therefore surveyed LVAD patients and caretakers to better define treatments deficits.

Methods and Materials

We surveyed 33 LVAD patients and their caregiver(s) in the clinic setting between June and September, 2012. The survey consisted of 8 questions focused on communication of advance directives, quality of life, current symptoms, and plans for turning off the LVAD in the event of severe illness.

Results

Twenty-nine respondents (88 % ) completed the survey, 12 caregivers and 17 patients. Despite the fact that 21 (75 % ) of respondents acknowledged they were aware they could obtain and advanced directive, 10 patients (58 % ) did not have one. Although most patients are not completing an advanced directive, 80 % of patients have had discussion with family about medical decisions if they were to become sick and couldn¡¯t communicate. No respondent, caretaker or patient, had discussed turning off the LVAD with a heart failure team member in the event of severe illness. The mean quality of life on a scale of 0-10 was 8.02, with the most common symptom complaints being fatigue and shortness of breath.

Conclusions

In this study, most LVAD patients did not complete advanced directives and no patients or caretakers had discussed medical condition warranting turning the LVAD off. These data identify an opportunity for more prospective definition of patients directions and a need for more detailed upfront discussion for medical planning.