The experience of caring for the hospitalized patient at end of life

of Dissertation Presented to the Graduate School of the University of Florida in Partial Fulfillment of the Requirements for the Degree of Doctor of Philosophy THE EXPERIENCE OF CARING FOR THE HOSPITALIZED PATIENT AT END OF LIFE By Donna Kelly Gwin December 2009 Chair: Barbara J. Lutz Major: Nursing Sciences This study explored the experiences and perceptions of ten healthcare providers (physicians, nurses and nursing assistants) who cared for six dying patients in general medicalsurgical units of an acute care hospital. Audio taped in-depth interviews in which the participants told their personal stories were transcribed verbatim and analyzed using Riessman’s method of narrative analysis. The narratives provided substantial evidence that the death of a patient is a significant and meaningful event and suggested that after the death, providers may have feelings of sadness and empathy for the patients and families and sometimes relief that the suffering is over. The participants were interested in facilitating a “good death” for their patients by working toward and/or maintaining a sense of harmony among the patients, families and healthcare providers. If there was indecision or nonacceptance of the careplan, the provider felt uncomfortable and disharmony. Some of the key factors that were identified by the analysis of the narratives which affected the providers’ abilities to facilitate a good death and promote harmony are (1) experience and knowledge of the provider, (2) openness of dialogue among providers, patients and families (3) attention to comfort of the patient, (4) providing support to the family (5) consensus in the plan of care among providers and family and (6) the patient not dying alone. The providers were also cognizant of other providers’ roles in caring for patients at the end of life. Disharmony and conflict can ensue if one provider does not perceive the other is providing quality care. The providers felt a sense of harmony when they felt supported by others, respected and valued as a team member and the event of a patient’s death is positive and meaningful. The harmony/disharmony in these narratives illustrates the implications of many barriers in how the healthcare providers perceive the experiences. When harmony is achieved among the patient, family and staff, the experience for the healthcare provider is viewed as meaningful and positive. Disharmony increases the stress and emotional burden of the healthcare provider and can have repercussions on the quality of care the patient receives. CHAPTER 1 THE PROBLEM Introduction I have observed in my roles of nurse and educator, the suffering of patients, families and the staff when caring for dying patients in the acute care hospital. Often, my coworkers would recount their experiences by telling stories of caring for the dying patient and family to each other. There seemed to be a need to share their experiences. Why do we have the need to tell these stories? Frankl (1984) stated that man is motivated to find meaning from suffering. Does telling a story help the healthcare provider find meaning from suffering? This dissertation examines the experiences of healthcare providers who have cared for a patient at end of life through narrative analysis of their stories. The current end of life research centers primarily on the patient and the family; there exists little research on professional caregivers’ experiences in the general medical-surgical unit. The few studies of professional caregivers at end of life have focused on nurses and physicians in the Intensive Care Unit (ICU) or hospice/palliative care environments (Wennber et al., 2004). Healthcare practice and the roles of the healthcare provider have changed dramatically in the past 50 years due to increased knowledge in biomedical science and the application of technology. Today’s hospitalized patient is more acutely ill and receives highly technical care in all areas of the hospital, not just the ICU. The general medical-surgical healthcare provider must be competent to provide highly technical skills that were once reserved for only intensive care units as part of the daily care of the patient. More research is needed to understand the effect of the death of a patient on the healthcare provider in the non-ICU setting. The aim of this dissertation is to explore the perceptions of nurses, physicians and nursing assistants as they tell their stories of the experience of caring for a dying patient in the general medical-surgical unit. In the following section, a backdrop will be provided for the inquiry of the professional healthcare provider’s experience and perceptions of caring for the hospitalized dying patient in a non-ICU setting. Background and Significance The way people die in America has changed in the past 100 years. In 1900, people often died a quick death at home from an acute illness or accident; the family assuming the burden of care and expense. The average life expectancy has increased from 47.3 years in 1900 to 77.3 years in 2002 (Arias, 2004). Now, seventy percent of all deaths in the United States are in individuals age 65 or older (Coyle, 2001). Regrettably, living longer does not always equate with living a better life because most deaths today occur after a long, progressive and debilitating illness; only about 10% of all deaths are sudden (Robeznieks, 2003). The National Center for Health Statistics (2003) states that over eleven million deaths occurred in the hospital and only about a half million were at home in 2003 even though over 87% of those surveyed by Tang (2003) would prefer to die at home. Since most end of life care in the 21 Century is provided in hospitals by healthcare providers instead of family, it is important to examine the healthcare providers’ experiences in caring for dying hospitalized patients. The following sections elaborate the background and significance of the changes in dying. The Quest to Avoid Aging and Death The rapid pace of advances in biomedical sciences has constructed the view of natural aging to be pathological; medical interventions are often considered to be the correct and only tool for “managing the problems of aging” (Kaufman, Shim, & Russ, 2004, p. 721). This biomedicalization of aging has fostered society’s negative view of growing older and a belief that the effects of aging and eventual death can be avoided (Kaufman et al., 2004). American society does not view death as a normal part of the life cycle and financially supports technologically complex and expensive healthcare costs through programs such as private insurance and Medicare without much direct cost to the patient or their family. What used to be extraordinary care (such as ventilators and artificial tube feedings) has become routine care to avoid death at all costs (Byock, 2004). The medical model of care that hospitals utilize is disease focused and views death as a failure (Byock, 2004). How does this attitude about death influence the healthcare providers’ experiences when caring for a patient who is dying? End of Life Care in the Hospital Frequently, the hospital becomes a revolving door in the last year of life, with each acute crisis weakening the patient and decreasing quality of life (Lorenz et al., 2004). Healthcare providers observe the patient’s decline and suffering with each episode of hospitalization, despite excellent and technologically advanced care. Many patients receive complex and expensive medical treatments that often do not cure and may have serious side effects that can compromise quality of life (Bailey et al., 2005). Numerous studies support the opinion that dying in the hospital does not equate to a “good death”. The often cited, Study to Understand Prognosis and Preferences for Outcome Risks of Treatments (SUPPORT) confirmed that there were considerable deficiencies for gravely ill hospitalized patients and they often received many intensive interventions in the last days of their lives (SUPPORT Principal Investigators, 1995). Much of the recent literature about end of life care suggests that dying patients are receiving inadequate and inappropriate care in acute care hospitals (Middlewood, Gardner, & Gardner, 2001). Many patients suffer with unrelieved pain and symptoms while they die in the hospital (Byock, 1995; Field & Cassel, 1997; Goodlin, Winzelberg, Teno, Whedon, & Lynn, 1998; Meltzer & Huckabay, 2004; Shugarman, Lorenz, & Lynn, 2005). Research has shown that end of life care in the hospital may not be properly managed, even with technology and expert medical and nursing care and that there are many barriers to quality care (Bakitas & Daretany, 2006; Casarett, Karlawish, & Byock, 2002; Yabroff, Mandelblatt, & Ingham, 2004). Barriers to Quality End of life Care Researchers have identified “substantial societal, healthcare system, provider and patient barriers” in quality end of life care (Yarbroff, Mandelblatt, & Ingham, 2004, p. 202). Some of these barriers identified are: • Societal and cultural views of illness, death and dying • Organizational (limited availability of services such as palliative care and hospice and continuity of care) • Healthcare provider issues (poor communication and inadequate education in attitude, knowledge and skills) • Financial (inadequate reimbursement or insurance) • Legal and ethical issues • Inadequate research (Casarett et al., 2002; Yabroff et al., 2004) It is not known how these barriers and other issues can influence the experience of the healthcare provider or professional caregiver due to the scant research. Societal and cultural influences The American culture has been described as “death defying” because it has accepted medical science’s ability to prolong life but finds acceptance of death as a natural process as “offensive” (Egan & Labyak, 2006, p. 40). Society views people who die as the victim of death and denies that death is a natural part of life (Connor, 1994; Kastenbaum, 19