Lori A. Roscoe

In Search of a Good Death

Spirituality and storytelling can be resources in aging successfully and in dying well given the constraints of modern day Western culture. This paper explores the relationship of aging to time and the dynamic process of the life course and discusses issues related to confronting mortality, including suffering, finitude, spirituality, and spiritual closure in regard to death. And, finally, the role of narrative in this process is taken up.

Beyond good intentions and patient perceptions: competing definitions of effective communication in head and neck cancer care at the end of life.

Effective communication between dying cancer patients and their health care providers about prognosis and treatment options ensures informed decision making at the end of life. This study analyzed data from interviews with end-stage head and neck cancer patients and their health care providers about communication competence and approaches to communicating about end-of-life issues. Patients rated their oncologists as competent and comfortable discussing end-of-life issues, although few reported discussing specific aspects of end-of-life care. Oncologists viewed giving prognostic information as a process rather than a singular event, and preferred answering patients’ questions as opposed to guiding the discussion. These data reveal subtle disconnects in communication suggesting that patients’ and health care providers’ information needs are not being met.

Family Caregivers' Future Planning for Younger and Older Adults With Serious Mental Illness (SMI)

This study examines plans for future caregiving made by family members of younger (n = 59) and older adults (n = 16) with serious mental illness (SMI). An online survey was advertised through a newsletter of the National Alliance on Mental Illness. Qualitative analyses yielded four areas of caregiver concern: health of the care recipient over time, ability of caregivers to sustain support, social support available for the care recipient, and financial burden of care. Despite these concerns, few caregivers reported completed plans for future caregiving. One fourth of the caregivers had made no plans, nor had they discussed future caregiving with others. Although most would prefer other relatives to assume care in the event they could not sustain support, these expectations may not be communicated openly. Generating discussion on this pertinent topic has implications for the aging society regarding how best to care for those with SMI and their caregivers.

Implications of the Schiavo Case for Understanding Family Caregiving Issues at the End of Life

ABSTRACT The case of Mrs. Terri Schiavo illustrates common themes in family caregiving at the end of life but is distinctive from most family caregiving situations in other ways. As occurred in Mrs. Schiavos case, family members do act as both caregivers and decisionmakers for their loved ones at the end of life, often without the benefit of written advance directives. Family stress and conflict may result, yet seldom lead to court proceedings, legislative intervention, and media coverage as occurred in the Schiavo case. The importance of informal conflict resolution and the limitations of adversarial legal approaches are discussed.

African Americans and Decisions About Hospice Care: Implications for Health Message Design

Despite the widespread use and acceptance of hospice care in the United States, African Americans underuse these services when faced with life-limiting illnesses. Many scholars have identified the barriers that may limit hospice enrollment and have called for the development of outreach campaigns to educate African Americans about hospice services. The design and implementation of such campaigns requires that campaign planners understand the issues that are most relevant to African American patients and families in making decisions about hospice care. This study focused on identifying such issues through a qualitative meta-ethnography. Three broad third-order themes were identified as relevant to African Americans’ decisions regarding hospice care: necessary knowledge of hospice services, the role of family members, and religious/spiritual considerations. These themes are discussed in terms of designing culturally appropriate health messages to promote informed decisions about hospice enrollment.

Cognitive attributions, depressive symptoms and hopelessness as predictors of perceived desirability of physician-assisted suicide in Alzheimer's caregivers

This study compared attitudes towards physicianassisted suicide in two groups of older persons, 57-caregivers of relatives with Alzheimers disease (AD) and 46-non-caregivers. A series of two-way ANOVAs by caregiver status and level of depressive symptoms compared hopelessness scores, attribution styles, and beliefs about physician-assisted suicide. Two attributional style scales were significantly associated with depressive symptoms. Subjects who felt less in control of the stresses in their lives reported more depressive symptoms (F = 10.16, p = .002). Subjects who felt that the factors causing stress were unchangeable also reported significantly more depressive symptoms (F = 5.41, p = .022). Over twothirds of both groups believed assisted suicide was a rational decision in some circumstances, but 40 percent of caregivers and only 24 percent of non-caregivers believed physicians should assist patients in committing suicide.

The Role of Patients’ Stories in Emergency Medicine Triage

ABSTRACT Emergency medicine is a communicative activity, and characteristics such as incomplete information, time pressure, and the potentially serious consequences of errors complicate effective communication and decision making. The present study examined the triage process as an interpretive activity driven in part by the patient’s story. Of four identified communication processes in the emergency department (ED), the “handoff” of patients between shifts has been identified as especially problematic since missing contextual details from patients’ stories increased the probability of errors. The problematic nature of patient handoffs led to our interest in triage, the initial site of interpretation and decision making. Triage distinguishes patients with emergent medical conditions requiring immediate care from those who can more safely wait for medical attention. We report results from 110 hours of observing the triage process and semistructured interviews with 16 triage nurses in a Level I Trauma Center in an urban teaching hospital in the southeastern United States. Field notes and interview transcripts were analyzed and coded to explore decision rules and information sources used in triage decision making. Triage nurses generally discounted patients’ stories in favor of information from visual cues and vital signs. Patients’ stories tended to influence the triage process only in certain cases when the story contained information that was not readily apparent, such as a recent organ transplant. Triage nurses’ reliance on “gut feeling,” however, might be a kind of narrative sense-making that combines observable and measurable clinical facts with the narrative competence to utilize intuition and past experience.

Healing the Physician's Story: A Case Study in Narrative Medicine and End–of–Life Care

Telling stories after a loved one’s death helps surviving family members to find meaning in the experience and share perceptions about whether the death was consistent with the deceased person’s values and preferences. Opportunities for physicians to evaluate the experience of a patient’s death and to expose the ethical concerns that care for the dying often raises are rare. Narrative medicine is a theoretical perspective that provides tools to extend the benefits of storytelling and narrative sense–making to physicians. This case study describes narrative writing workshops attended by physicians who care for dying patients. The narratives created revealed the physicians’ concerns about ethics and their emotional connection with patients. This case study demonstrates that even one–time reflective writing workshops might create important opportunities for physicians to evaluate their experiences with dying patients and families.

Anticipating deep autumn: a widening lens

Medicine has become one of the most powerful influences of the twentieth century, and currently dominates how we approach and think about another powerful phenomenon: the aging of the world’s population. Our reliance on the medical model, with its focus on pathology, physiology, and biomedical interventions, makes it difficult for aging men and women and those in the health care field who care for them to seek alternative ways to attach meaning to the process of growing old. This article explores the role of the humanities as an alternative to the biomedical model which can enlarge our abilities to see the multidimensional aspects of aging. Age related writings and visual images by Kenyon, Neel, Olds, Valadon, and Hemingway are discussed to illustrate how fictive representations can and do serve as a moral impetus or stimulus for meaningful reflection about life stages that have not yet been experienced.

Creating an Academic-Community Provider Partnership in Hospice, Palliative Care, and End-of-Life Studies

Improving care in the final phase of life has been an important medical and societal goal during the last two decades. The field of palliative care has been moved forward by thoughtful and rigorous research that seeks to clarify the values and treatment preferences of people in the last phases of their lives and of their families, determines effective methods to control pain and other symptoms, and improves access to quality end-of-life care. Conducting research with dying patients in palliative care settings can be challenging, and such studies can be methodologically complex.1-4 Palliative care participants in research studies are often available for only short periods of time; they may die or become incapacitated before data can be collected. Studies are often designed so that patient information is gathered on admission to a hospice or palliative care setting, yet this may be a time of crisis when data collection is inappropriate and unwelcome. The knowledge that time together for the patient and family is limited may also mean that they wish to focus on activities of closure rather than participate in research. In response to the need for research that best fits endof-life care situations and settings, a collaborative research center was established to further end-of-life studies by the University of South Florida (USF) and key community partners, including The Hospice of the Florida Suncoast,