Patients' and caregivers' inside perspectives: living with a left-ventricular assist device as ...

283 Pages·2016·1.78 MB·English

Wayne State University
Wayne State University Dissertations
1-3-2012
Patients' and caregivers' inside perspectives: living
with a lef-ventricular assist device as destination
therapy
Linda Marcuccilli
Wayne State University,
Follow this and additional works at: htp://digitalcommons.wayne.edu/oa_dissertations
Part of the Nursing Commons, and the Other Medical Specialties Commons
Recommended Citation
Marcuccilli, Linda, "Patients' and caregivers' inside perspectives: living with a lef-ventricular assist device as destination therapy"
(2012). Wayne State University Dissertations. Paper 516.
Tis Open Access Dissertation is brought to you for free and open access by
PATIENTS’ AND CAREGIVERS’ INSIDE PERSPECTIVES: LIVING WITH A LEFT-
VENTRICULAR ASSIST DEVICE AS D ESTINATION THERAPY

by

LINDA MARCUCCILLI, MSc, RN
DISSERTATION
Submitted to the Graduate School
of Wayne State University,
Detroit, Michigan
in partial fulfillment of the requirements
for the degree of
DOCTOR OF PHILOSOPHY
2012
MAJOR: NURSING
_
Advisor Date

_

_

_

_
©COPYRIGHT BY
LINDA MARCUCCILLI
2012
All Rights Reserved
DEDICATION
To God, my husband, my dad, and all my friends and family here on earth and in heaven who
believed in me.

ii
ACKNOWLEDGEMENTS
This dissertation research would not have been possible without the support, encouragement, and
guidance of all my professors and mentors. First, I wish to acknowledge Dr. Jean Davis, the
College of Nursing, and the Graduate School for providing me with the scholarships and grants
to fund my doctoral education. It was through these resources that allowed me to concentrate on
my studies, and become a productive nurse scientist. Next, I would like to acknowledge my
primary mentor, Dr. April Vallerand, who has not only exuded her knowledge and expertise in
facilitating my training as a research scholar, but has remained my pillar of strength when I
needed it the most.
I also wish to acknowledge my mentor and colleague, Dr. Rosalind Peters, who with her
dedication to my learning needs, patience, and understanding, believed in my potential as a
future nurse scientist. She also introduced me to my research advisor and colleague, Dr. Jessie
Casida. Dr. Jessie Casida is a remarkable mentor, who not only invited me to participate in his
innovative research, but also took the time and patience to help me develop my scholarly writing
skills. I am looking forward to advancing the science of life-sustaining technology with him.
My dissertation proposal would not be complete without the qualitative expertise of Dr. Karen
Tonso. She not only imparted her wisdom of the interpretive paradigm, but also taught me how
to expand my thinking “outside of the box” and bring the voice of participants’ experiences and
meanings to life. A special acknowledgement goes out to Dr. Janet Harden, who guided me with
her knowledge and passion of caregiving amongst vulnerable populations – thank you. I also
wish to thank Dr. Kay Klymko, my gerontology specialist. She not only shares my passion for
promoting quality care for older adults, but also gave me extra time to complete my coursework
so I can concentrate on my dissertation. Dr. Klymko has role-modeled a gentle, encouraging, and
iii
inspiring attribute that I can only hope to mirror in my research, teaching, and mentoring career.
I also wish to acknowledge the staff at the Center for Circulatory Support at The University of
Michigan Health Systems — Dr. Francis Pagani, Director, and Susan Wright, RN, MS,
Supervisor, for allowing me continued access to the LVAD population, and Sarah Fox, BS,
clinical coordinator, for her diligence in recruiting study participants.
Next, I would like to acknowledge my family, close friends and fellow colleagues who where
always there for me as I progressed throughout the program — thank you for all your support,
encouragement, and most of all, your comradery.
Last but not least, it is with great honor to not only acknowledge, but to also thank the
participants in my inquiry. It was their courage, love of life, and strength in their voices, hearts
and souls, that created the foundation for the experiences and meanings behind living with a life-
sustaining device. These voices will go on for all patients with mechanical circulatory support,
their caregivers, and health care providers caring for such patients.

iv
PREFACE

When we are struck with wonder, our minds are suddenly cleared of the clutter of
everyday concerns that otherwise constantly occupy us. We are confronted by the thing, the
phenomenon in all of its strangeness and uniqueness. The wonder of that thing takes us in, and
renders us momentarily speechless as.
Van Manen, 202

v
FOREWORD
The dissertation set forth consists of five chapters. The first chapter (Chapter 1) sets the
stage for the dissertation research and consists of the following eight (8) sections which set the
stage for the rest of the inquiry: 1) Experiential context, 2) Assumptions, biases, intuitions, and
perceptions, 3) The phenomenon, 4) Background, 5) Justification for studying the phenomenon,
6) Phenomenon discussed within a specific context, 7) Selective qualitative research methods
and justification for its potential, and 8) Significance to nursing. In order to facilitate inquiries
into the research methods, journal entries, procedures, and participant responses are followed by:
(Audit trail). The second chapter (Chapter 2) presents the evolution of the study from a historical
context, and presents a synthesis of the literature in several aspects, including: 1) Health care
practices among patients with heart failure and advanced heart failure, 2) Quality of life among
patients with left-ventricular assist devices (LVADs) as a bridge to transplant (BTT), 3) LVADs
as a destination therapy (DT), 4) Caregiver support in situations similar to LVADs as DT, 5)
Caregiving in the heart failure population, 6) Caregiving in patients with a BTT, 7) Caregivers of
patients with advanced heart failure: a palliative care and end of life care perspective, 8)
Caregiving in patients with life-sustaining devices, 9) Ethical dilemmas, and ends with the
statement of the problem. The third chapter (Chapter 3) defines and discusses phenomenology, a
brief historical review of phenomenology as a philosophy and methodology, and discusses van
Manen’ (1990) phenomenological method of inquiry as the guide for the inquiry. The research
activities are outlined, including strategies for ensuring methodological rigor, human subject
considerations, and conclude with the strengths and limitations of the method of inquiry. A view
into the incorporation of humanities, the living arts, and photography is provided to illustrate the
creativity used in interpreting participants’ voices. The fourth chapter (Chapter 4) presents the
vi
findings from patients’ and caregivers’ voices in biographical format, using themes and sub-
themes to illustrate the lived experience. Finally, the fifth chapter (Chapter 5) attempts to
explicate the essence of the lived experience of DT using the extant literature and Roy’s
Adaptation Model as a theoretical framework. Conclusions and implications preface the need for
future research and building a sustainable program of research dedicated to meet the palliative
care and end of life care needs for patients with life-sustaining devices and their family
caregivers.

vii
TABLE OF CONTENTS
Dedication.......................................................................................................................................ii
Acknowledgements........................................................................................................................iii
Preface.............................................................................................................................................v
Forward...........................................................................................................................................vi
List of Tables..............................................................................................................................xviii
List of Figures.............................................................................................................................xix
Chapter 1 Introduction: Aim of the Study......................................................................................1
Experiential Context............................................................................................................2
Assumptions, Biases, Intuitions, and Perceptions................................................................3
Palliative care, end of life care, and end-stage heart failure..................................3
The Phenomenon.....................................................................................................5
Background..............................................................................................................6
Characteristics of heart failure................................................................................7
Stages, symptoms, and medical management........................................................7
Stages of heart failure................................................................................8
Medical management for advanced or end-stage heart failure............................9
Intravenous positive inotrope therapy.........................................................9
Heart transplant.........................................................................................10
Evolution of mechanical circulatory support........................................................11
First generation LVADs............................................................................14
Second generation LVADs........................................................................14

viii