Dilemmas Adult Children Face in Discussing End-of-Life Care Preferences with Their Parents.

This study explored the perceived goals, barriers, and strategies that characterize family interactions about advance care planning (ACP), which is instrumental in guiding end-of-life care. Discussions within the family context can significantly improve end-of-life decision making but are complicated, partly because participants are attempting to achieve multiple, and often competing, goals. Participants (n = 75) responded to a hypothetical scenario about a conversation with a parent about ACP by completing an anonymous online survey. Respondents described their conversational goals, anticipated barriers, and strategies they thought would be helpful. Thematic data analysis identified four dilemmas participants faced while attempting to achieve multiple, conflicting goals: (1) the desire to make the parent feel wanted while discussing them not being around; (2) the need to be gentle but still direct; (3) the practical necessity of designating one decision-maker without provoking family conflict; and (4) the desire to lessen the burden on the designated decision-maker by providing necessary information while still placing them in a decision-making role. Participants reported using several strategies to manage these complex dilemmas. These findings provide support for the utility of Goldsmith's normative theory of social support in the context of discussions about ACP. The results also provide a foundation for developing conversational guides to facilitate high-quality family conversations about ACP between adult children and their parents.

Forcible Amputation in Delusional Patients: A Narrative Analysis of Decisional Capacity.

This case study concerns the predicaments faced by two women who each had been advised by her physicians to have a gangrenous foot amputated to prevent the potentially fatal spread of infection. In both cases, the determination of the patients' decisional capacity was a critical component in judging whether or not to honor their medical treatment decisions. The communicative complexity of navigating a double bind, a situation in which a person confronts a choice between two undesirable courses of action, is also discussed. The patients in these cases had no medically appropriate choice that also respected other valued outcomes, such as independence, a sense of dignity, or control over one's destiny. Taken together, these cases raise issues about the context-specific meaning of decisional capacity and its role in informed consent.

Victim of Abuse, or Bully? The Case of the 800-Pound Man.

Obesity in the United States has been declared both a disease and an epidemic. Physicians have thus been identified as the "experts" in managing weight loss, but they have few effective solutions to recommend except bariatric surgery. Most physicians and medical facilities are unprepared to manage the complex medical needs of obese patients, and most families are unprepared to manage the dietary issues in helping a family member lose weight, much less the physical, psychological, and interpersonal issues that surface. This case explores the medical, ethical, and communication challenges that arose in the case of a patient who weighed 800 pounds.

Sometimes Those Hoofbeats Are Zebras: A Narrative Analysis.

The case of BB, an 11-year-old girl who was hospitalized because of sudden odd seizure-like symptoms and catatonic affect, highlights several ethical issues and communication problems. The correct diagnosis was initially missed, partly because physicians are trained to think of the most common explanation for a patient's symptoms; the medical education truism "when you hear hoofbeats, think horses, not zebras" was not helpful in BB's case. The common habit of medical professionals to not revisit a diagnosis once one is established also led to missed opportunities to provide appropriate care for this young patient. The difficulty nurses and/or family members have in questioning a diagnosis and treatment plan are also discussed.

The Role of Patients' Stories in Emergency Medicine Triage.

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.

African Americans and Hospice Care: A Narrative Analysis.

Recent studies suggest that terminally ill African Americans' care is generally more expensive and of lower quality than that of comparable non-Hispanic white patients. Scholars argue that increasing hospice enrollment among African Americans will help improve end-of-life care for this population, yet few studies have examined the experiences of African American patients and their loved ones after accessing hospice care. In this article, we explore how African American patients and lay caregivers evaluated their hospice experiences. Drawing from 39 in-depth interviews with 26 participants, we use a modified version of Bute and Jensen's (2011) narrative typology to organize patients' and caregivers' stories into three general categories: narratives of satisfaction, narratives of regret, and narratives of ambivalence. Building from these categories, we discuss the implications of this research for understanding hospice experiences, promoting hospice access, and improving end-of-life care for marginalized populations.

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.

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.

Well-being of family caregivers of persons with late-stage Huntington's disease: lessons in stress and coping.

The utility of a stress-process model in predicting health and quality-of-life outcomes for family caregivers of persons with Huntington's disease (HD) was tested. HD is an inherited neurodegenerative disease that poses particular challenges to patients and families. Seventeen family caregivers were interviewed and completed scales measuring stressors, appraisals, protective factors, and outcomes. No direct relationship between stress and caregiver well-being was found; the impact of stressors was mediated by appraisals and protective factors. Bivariate correlation analysis revealed significant positive relationships between satisfaction with emotionally supportive communication and life satisfaction. Significant positive correlations were found between positive appraisals of the benefits of the caregiving experience and life satisfaction and health. Mastery was significantly positively correlated with life satisfaction and negatively correlated with depressive symptoms; similar results were found between spirituality and outcome measures. Caregivers' interpretations appeared to have a more significant impact on well-being than did objective characteristics of the experience.

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.

Quality of life at the end of life for nursing home residents: perceptions of hospice and nursing home staff members.

This study examined whether the perceptions of nursing staff members about the importance of quality-of-life domains and their perceived ability to influence those domains for residents at the end of life were affected by their institutional affiliation, level of training, or residents' cognitive status. Respondents were 146 Certified Nursing Assistants (CNAs) and Registered Nurses (RNs) from nursing homes and hospices. Magnitude estimation scales were used to rate the importance of and perceived ability to influence 11 quality-of-life domains for both cognitively intact and cognitively impaired residents. Overall, respondents' scores indicated a high level of importance of all quality-of-life domains and similarly positive perceptions that they could influence quality-of-life domains for hypothetical nursing home residents. Analysis of variance revealed that respondents reported lower average importance and ability to influence ratings when considering residents with cognitive impairment. Respondents affiliated with hospice agencies also reported lower average importance and ability to influence ratings on some domains, although the high ratings overall limit the clinical significance of these differences. Importance ratings were not affected by the level of education, but CNAs reported higher perceived ability to influence ratings on four domains than did RNs. Future studies should explore whether the domains measured adequately capture the end-of-life experience in nursing homes.

Quality of life and symptom control in hospice patients with cancer receiving chemotherapy.

The value of palliative chemotherapy for hospice patients is difficult to quantify and little is known about outcomes from these treatments. This study examined quality of life and symptom control in hospice patients with cancer receiving chemotherapy and in a control group of hospice patients with cancer who had not received chemotherapy for at least 3 months. Using a case-control study design matching patients by age, gender, race, and cancer diagnosis, patients receiving chemotherapy reported a similar number of symptoms as patients off chemotherapy. Global symptom distress was comparable in both groups as was quality of life. Patients in both groups were similar at the symptom-specific level, however, patients on chemotherapy had better symptom outcomes for urination problems (p=0.03), numbness/tingling (p=0.03), muscle weakness (p=0.07), and pain (p=0.09). Patients on chemotherapy had poorer symptom control involving change in taste (p=0.01) and cough (p=0.01). Patients on chemotherapy were more likely than those off chemotherapy to report that chemotherapy "made them feel better" (p=0.01) and "allowed better symptom control" (p=0.01), indicating that patients taking chemotherapy had more subjective benefit from chemotherapy when compared to those off chemotherapy. The two groups showed no difference in the rate of survival.

Implications of the Schiavo case for understanding family caregiving issues at the end of life.

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. Schiavo's 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.

Advancing geriatrics education: evaluation of a new curricular initiative.

BACKGROUND: This study describes the development of a required 1-week curricular program in geriatric medicine for 3rd-year medical students and presents 3 years of evaluation data. DESCRIPTION: Successful aging, heterogeneity of the aging population, and comprehensive geriatric assessment were emphasized. In addition to didactic sessions, students participated in panel discussions and small group case conferences, and performed history and physical examinations on older patients. EVALUATION: Students' acquisition of knowledge about geriatric medicine was assessed with pre-and posttests; posttest scores showed statistically significant improvement. Because attitudes toward older patients can impact the care provided, students' completed pre- and postattitude assessment scales. Attitude measures were repeated for 2 student cohorts, 1 and 2 years after completion of the program. Independent t tests comparing mean pretest and posttest scores revealed significant improvement in students' attitudes, which were maintained when attitudes were retested. Standardized mean difference scores were computed to measure the relationship between the educational intervention and students' attitude measures. CONCLUSIONS: Time in the medical school curriculum is scarce, but these results indicate that significant improvements can be made in medical students' attitudes toward and knowledge of older patients in 1 week.