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Treatment Decision-Making in Older Adults with Cancer

University of Nebraska - Lincoln of Nebraska - Lincoln Public Access Theses and Dissertations from the College of Education and Human Sciences Education and Human Sciences, College
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University of Nebraska - Lincoln of Nebraska - Lincoln Public Access Theses and Dissertations from the College of Education and Human Sciences Education and Human Sciences, College of (CEHS) July 2007 Treatment Decision-Making in Older Adults with Cancer Maribeth Hercinger University of Nebraska - Lincoln, Follow this and additional works at: Part of the Education Commons Hercinger, Maribeth, Treatment Decision-Making in Older Adults with Cancer (2007). Public Access Theses and Dissertations from the College of Education and Human Sciences. Paper 11. This Article is brought to you for free and open access by the Education and Human Sciences, College of (CEHS) at of Nebraska - Lincoln. It has been accepted for inclusion in Public Access Theses and Dissertations from the College of Education and Human Sciences by an authorized administrator of of Nebraska - Lincoln. TREATMENT DECISION-MAKING IN OLDER ADULTS WITH CANCER by Maribeth McCullough Hercinger A DISSERTATION Presented to the Faculty of The Graduate College at the University of Nebraska In Partial Fulfillment of Requirements For the Degree of Doctor of Philosophy Major: Human Sciences (Gerontology) Under the Supervision of Professor James A. Thorson Lincoln, Nebraska June, 2007 ACKNOWLEDGMENTS This study would not have been possible without the willingness and honesty of the participants of this study. Each individual helped me better understand the experiences with cancer treatment decision-making and confirmed that nurses can really make a difference in the cancer patient's life. I want to acknowledge my dissertation committee for they provided essential support for my project. Dr. Thorson kept me on track and provided much encouragement in a humorous manner. He kept a smile on my face even when I was frazzled with the details. Dr. Kosloski's thought provoking questions and courses in gerontology moved me passed what I thought I was capable. I am thankful for Drs. Dwyer and Kelley-Gillespie as they gave me insight into my findings. Thanks to all of my committee for the large doses of confidence! This dissertation would not have been completed without the assistance from my special friends at Creighton and their support during my doctoral education. They kept me on track and opened my eyes to new pathways of success. The Winnifred Ellenchild Pinch Award from Iota Tau, Sigma Theta Tau provided monetary assistance for my transcriptions. In receiving this award in Dr. Pinch's name, I am humbled by her scholarly work and hope to honor her in future publications of this project. My family endured this journey with me and deserves much credit to this accomplishment. I want thank my husband Jim for picking up the pieces of the household and supporting me throughout this endeavor. My children, Michaella and Patrick, gave me motivation and strength to keep moving forward. Donna McCullough, my mother, has been my inspiration in nursing and life. Her courage and genuine concern for others guided me to nursing as my life's calling. i Table of Contents Abstract...1 Chapter 1 Introduction to the Study.2 Purpose Statement 3 Significance of the Study.4 Research Questions.. 5 Conceptual Framework, Definitions, and Phenomenological Philosophy...6 Assumptions, Limitations, and Delimitations of the Study....8 Overview of the Study Chapter 2 Literature Review..10 Introduction and Purpose of the Study..10 Cancer and the Older Adult...10 Quality of Life (QOL) Issues in Persons with Cancer.12 Definition and Dimensions of QOL..13 QOL and Cancer Summary of QOL and Cancer...23 Decision-making Decision-making in Cancer...27 Decision-making in Older Cancer Patients Summary Chapter 3 Methodology..34 Introduction....34 ii Qualitative Design Rationale.34 Methodology Phenomenology..35 Research Questions...37 Definitions..37 Sources of Methodology 38 Role of the Researcher...40 Research Design Specifics Sample Population and Issues Related..41 Ethical Issues...42 Data Collection Methods...44 Data Management...49 Data Analysis..49 Verification of Interpretation..51 Summary 52 Chapter 4 Findings Introduction Results Sources of the Findings 53 Background Data.54 Interviews Emerging Themes..112 Practice Participant Data.. 118 iii Recruitment Field Issues Summary Chapter 5 Conclusions and Implications Introduction Discussion Themes Research Questions..125 Implications Limitations Future Research Summary..144 References APPENDIX A Study Protocol APPENDIX B - Background Data Collection Form APPENDIX C Institutional Review Board Approvals APPENDIX D - Recruitment APPENDIX E - Consent Forms APPENDIX F - Personal Interview Form APPENDIX G-Background Data Form Coding.. 192 TREATMENT DECISION-MAKING IN OLDER ADULTS WITH CANCER Maribeth McCullough Hercinger, Ph.D. University of Nebraska, 2007 Advisor: James A. Thorson Decision-making for cancer treatment is becoming more and more complex and individuals are expected to be active participants in this process. As the diagnosis of cancer occurs more frequently among adults, health care professionals must be accountable to place a greater emphasis on assisting individuals with the difficult treatment decisions. This study explored the experiences of older adults when making decisions for cancer treatment using a phenomenological approach. Thirteen in-depth, face-to-face interviews were completed with individuals who experienced a new diagnosis of cancer. Participants of the study included eight females and five males ages years of age. Five major themes emerged in the present study: (1) importance of relationships, (2) communication, (3) spirituality, (3) positive coping, and (5) powerlessness. Powerlessness or lack of control was highlighted as one of the strongest themes. Psychosocial influences of the treatment decision-making process were voiced most frequently. The treatment decision-making process came into view as an ongoing, non sequential, interactive process that is complex with many influencing factors. The implications of the present study are presented in relationship to the health care professionals role with an emphasis on nursing. An understanding of the individual s unique perspective, including an assessment of the cancer patient s social, physical, psychological and spiritual needs and desires should be at the base of all nursing care. The results from the present study may add to the limited knowledge of the individual s perspective of the treatment decision-making process. Acknowledging the uniqueness of the older adult cancer patient s experience of treatment decision-making may assist health care providers to provide appropriate supportive care and improve their quality of life during this difficult process. 2 Treatment Decision-making in the Older Adult with Cancer You are not protecting me from anything; it s a matter of including me Andrew Chapter 1 Introduction to the Study Decision-making for cancer treatment is becoming more and more complex, and individuals are expected to be active participants in this process. Consumers demand that health care professionals communicate and collaborate with them on decisions that will affect their lives. The number of older adults with cancer is rising, and health-related costs will continue to increase. The American Cancer Society (ACS) (2005) estimates approximately 1.4 million new cancer cases in the U. S. population for 2005 and an estimated five year survival rate of 85%. Cancer in older adults is a growing concern because of the burden it places on individuals and families. Cancer incidence and cancerrelated mortality are higher in older populations (ACS, 2005). It is estimated that 60% of all cancers occur in those over the age of 65 (Ries et al., 2000 as cited in Oncology Nursing Society and Geriatric Oncology Consortium Joint Position on Cancer Care in the Older Adult, 2004). It is estimated that in the U. S. the population over the age of 65 is expected to double to 70 million by the year 2030, and this group will be racially and ethnically diverse (Center for Disease Control [CDC], 2000). This population s health care expenditures will approach $400 billion annually (CDC). Only recently has there been a focus on older adults with cancer in research studies. However, most of these studies concentrate on those who are undergoing treatment or who have survived cancer. 3 We know little about the specific experiences of older adults during the time they are making decisions for cancer treatment. After the individual has been informed of treatment options, it is often the nurse who is the one who plays a vital role in the understanding and interpretation of the complexities patients have laid out before them. Therefore, nursing professionals must place a great emphasis on helping the adult work through all phases of care including the initial diagnosis. Comprehensive appreciation of the decision-making process may improve the quality of care for this vulnerable population. This qualitative, phenomenological study was completed to understand the experience of the older adult with cancer when making treatment decisions. A review of the significance of cancer to the older adult, a description of this population and issues related to quality of life (QOL), the issues of decision-making in treatment for cancer, and the role of the nursing professional in the care of the older adult with a diagnosis of cancer are addressed in this paper. Purpose Statement The primary purpose of this study was to understand the experience of the older adult during cancer treatment decisions. The phenomenon of treatment decision-making from the individual s perspective was investigated. Qualitative research is an inquiry process that explores a human problem (Creswell, 1998). This study examined the fundamental nature of the older adults cancer treatment decision-making processes from a personal perspective. The results of this study contribute to the evidence of the lived experience of this difficult process and ultimately may improve the individual s quality of life (QOL). 4 Significance of this Study Cancer is often considered to be a disease of the elderly, and it has an overwhelming impact on the quality of life of those individuals who are diagnosed with this disease. When confronted with the making of decisions for cancer treatment the individual with cancer has his or her life turned upside down. Complex treatment decisions are required under very challenging circumstances. Decisions are influenced by chronological age, knowledge of the treatments themselves, family perceptions and beliefs, potential biases of ageism, comorbid diseases, cognitive function, and functional status (Monfardini, 1996). This terrifying ordeal is made more difficult because large amounts of information bombard the cancer patient, and these decisions must be made in a short period of time. It is imperative that health care professionals develop insight into the older adult s treatment decision-making process to improve quality of health care. When faced with a decision for cancer treatment, older adults are challenged with difficult choices. Having just heard the devastating news of a new diagnosis of cancer, these individuals must make decisions under stressful situations. A qualitative approach was chosen for this study for it seeks to uncover pertinent issues involved in the decision-making process for the older adult. This inductive method to collect data seeks to uncover new understandings of this very personal decisionmaking process for cancer treatment. When diagnosed with cancer, many consider it to be a disease with both medical and emotional impacts (Lenhard, Lawrence, & McKenna, 1995, p. 64). The cancer diagnosis creates anxiety throughout all phases of the cancer experience and impacts the individual, the family, and also the health care provider. A fear of death may be a primary 5 concern of a newly diagnosed cancer patient, and this fear is rooted in feelings of uncertainty (Shell & Kirsh, 2001). The person may feel overwhelmed by all the information, the anxiety of the situation and the complex treatment decisions that must be undertaken. The oncology nurse is in a position to assist the patient to cope with the diagnoses and assist with the decision-making process. If nurses have a better understanding of the cancer treatment decision-making process, these patients can be provided with the support that they need and deserve. All health care professionals must understand the experience of treatment decision making from the cancer patient s perspective to be able to plan strategies to individualize care. Age is no longer considered a primary standard for treatment of cancer, and health care professionals must make an effort to reduce age bias by patients, families, and health care professionals (Coleman, Hutchins, Goodwin, 2004). However, the current push to include the older adult in treatment regimens and research trials may put tremendous demands on them. Stressors on the older adult may be compounded and possibly lead to hasty treatment decisions. Empirical evidence demonstrates that the older person with cancer has unique needs (Oncology Nursing Society, 2004). An improved understanding of the decision-making process by the older adult will assist the health care professional to enhance the quality of care for cancer patients. Research Questions The grand tour question for this study was as follows: What is the experience of the older adult when making decisions for cancer treatment? This qualitative study was guided by the following research questions: 6 1. From the perspective of the person with cancer, what is the process of the treatment decision? 2. What or who are the influences in the decision-making process when older adults decide on treatment for a new diagnosis of cancer? Conceptual Framework, Definitions, and Phenomenological Philosophy Although individuals with cancer and their families make difficult decisions throughout their journey with cancer, there currently is no accepted theoretical framework for assisting patients with decision-making, and a dearth of research on the older adult and decision-making exists. The intent of the present research study was to increase an understanding of the older adult s treatment decision-making process when confronted with a new diagnosis of cancer. The tradition of inquiry proposed for this research is phenomenological. The philosophical assumption for this study is ontological, for the researcher feels that the reality is subjective and multi-factorial and is best seen from an individual s perspective (Creswell, 1998). The chosen philosophy for this phenomenological research study is derived from Maurice Merleau-Ponty. This philosophy includes both a philosophy of essences (Husserl) and a philosophy of existences (Heidegger) (Macann, 1993, p.161). Merleau- Ponty s inclusion of both a world view and a scientific view provides a perspective that matches this research study. Cancer treatment is a very scientific perspective, but the individual with cancer can perceive the world in a unique way due to individual experiences. The perceptions of the individuals will provide meaning of the experience and includes the relational and cultural contexts (Thomas, 2005). Therefore, this 7 philosophy complements the experience of the cancer treatment decision-making process for it is believed to include these contexts. Definitions were used to guide the study by bracketing the data to the naturalistic setting in which the decision for cancer treatment was made and provides a basis for the criterion sample used for the study. In this research study, the following definitions were used: 1. Decision-making: The process by which an older cancer patient decides whether to accept or decline treatment. 2. Process: a series of related events that follow in sequence from a particular state or condition to a conclusion or resolution (Mosby, 1994, p. 1278). 3. Older Adult Cancer Patient: Older Adult Cancer Patient: A person 50 years of age or older who is confronted with a new diagnosis of cancer. 4. New Cancer Diagnosis: A new cancer diagnosis is considered to be the first cancer diagnosis or a new primary cancer diagnosis and not a metastasis of a previous cancer. 5. Treatment: Treatment for cancer is the accepted treatment for cancer including surgery, chemotherapy, radiation, and/or biological response modifiers for the goal of cure or palliation. 6. Quality of Life: is an individual s perception of his/her position in life in the context of the culture and value systems in which he/she lives and in relation to goals, expectations, standards, and concerns affected in a complex way by the person s physical health, 8 psychological state, level of independence, social relationships, and relationships to salient features of their environment (World Health Organization [WHO], 2006). These definitions provide a background to guide the study. The definitions were purposively broad to capture the individual s personal point of view. For example, the WHO definition includes a perspective that can be used to describe the personal impact of the cancer experience. Assumptions, Limitations, and Delimitations of the Study Assumptions This study had the following assumptions: 1. The participants in the study will report their honest perceptions and feelings about the treatment decision-making process. 2. The older adults will be able to recall the influences of their treatment decision-making processes retrospectively. 3. Although no treatment decision-making experiences will be exactly the same, it will be assumed that the respondent will describe an essential process that can be described verbally in an interview Limitations This study has the following limitations: 1. Because this is a qualitative study, the results may not be generalized beyond the sample itself. 2. The older adult population is heterogeneous, and therefore the sample will be unable to include all possible characteristics of the older adult with cancer. 9 3. Although personal experiences will be attempted to be set aside in the analysis, the individual researcher s perspective may impact the data interpretation. Delimitations The following are delimitations of this study: 1. This study was delimited by older adults over age 50 years. Although the age of 65 is considered to be the age of retirement in our society, individuals are retiring earlier. The older middle aged adult (50-65 years old) may bring an important perspective in this process and was included in this study. 2. This study was delimited by adults with a new diagnosis of cancer and a decision for a cancer treatment was accepted or rejected in the last 6 months to enhance accuracy and completeness of the experience s description. 3. The data from the study was analyzed from a perspective of an experienced nursing professional. Overview of the Study A phenomenological study was conducted to gain insight into the treatment decision-making process of the older adult with cancer. The purpose, significance, research questions, assumptions and limitations were presented in the current chapter. Chapter Two reviews relevant literature. Chapter Three discusses the methodology of the study. Chapter Four reports the findings, and Chapter Five interprets those findings and discusses their implications. 10 Chapter 2 Literature Review Introduction and Purpose of the Study This qualitative, phenomenological study was completed to capture the experience of the older adult with cancer when making treatment decisions. The literature review encompasses cancer and the older adult, quality of life issues with cancer patients, and cancer treatment decision-making. Cancer and the Older Adult The Older Adult The older cohort is considered to be one of the fastest growing groups in North America, and they are considered to be a dynamic and ever changing population (Thorson, 2000).
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