Evolution of Investigating Informed Assent Discussions about CPR in Seriously Ill Patients.

CONTEXT: Outcomes after cardiopulmonary resuscitation (CPR) remain poor. We have spent 10 years investigating an "informed assent" (IA) approach to discussing CPR with chronically ill patients/families. IA is a discussion framework whereby patients extremely unlikely to benefit from CPR are informed that unless they disagree, CPR will not be performed because it will not help achieve their goals, thus removing the burden of decision-making from the patient/family, while they retain an opportunity to disagree. OBJECTIVES: Determine the acceptability and efficacy of IA discussions about CPR with older chronically ill patients/families. METHODS: This multi-site research occurred in three stages. Stage I determined acceptability of the intervention through focus groups of patients with advanced COPD or malignancy, family members, and physicians. Stage II was an ambulatory pilot randomized controlled trial (RCT) of the IA discussion. Stage III is an ongoing phase 2 RCT of IA versus attention control in in patients with advanced chronic illness. RESULTS: Our qualitative work found the IA approach was acceptable to most patients, families, and physicians. The pilot RCT demonstrated feasibility and showed an increase in participants in the intervention group changing from "full code" to "do not resuscitate" within two weeks after the intervention. However, Stages I and II found that IA is best suited to inpatients. Our phase 2 RCT in older hospitalized seriously ill patients is ongoing; results are pending. CONCLUSIONS: IA is a feasible and reasonable approach to CPR discussions in selected patient populations.

Abandonment at the end of life from patient, caregiver, nurse, and physician perspectives: loss of continuity and lack of closure.

BACKGROUND: Surveys and anecdotes suggest that patients and family members sometimes feel abandoned by their physicians at the transition to end-of-life care. To our knowledge, no prior studies describe abandonment prospectively. METHODS: We conducted a longitudinal, qualitative study of patients, family caregivers, physicians, and nurses using a community-based sample. Using a purposive strategy, we recruited 31 physicians who identified 55 patients with incurable cancer or advanced chronic obstructive pulmonary disease, 36 family caregivers, and 25 nurses. Eligible patients met the prognostic criterion that their physician "would not be surprised" if death occurred within a year. Qualitative, semistructured interviews were performed at enrollment, 4 to 6 months, and 12 months and were audiotaped, transcribed, and coded by an interdisciplinary team. When asked to talk about hope and prognostic information, participants spontaneously raised concerns about abandonment, and we incorporated this topic into our interview guide. RESULTS: Two themes were identified: before death, abandonment worries related to loss of continuity between patient and physician; at the time of death or after, feelings of abandonment resulted from lack of closure for patients and families. Physicians reported lack of closure but did not discuss this as abandonment. CONCLUSIONS: The professional value of nonabandonment at the end of life consists of 2 different elements: (1) providing continuity, of both expertise and the patient-physician relationship; and (2) facilitating closure of an important therapeutic relationship. Framing this professional value as continuity and closure could promote the development of interventions to improve this aspect of end-of-life care.

An approach to understanding the interaction of hope and desire for explicit prognostic information among individuals with severe chronic obstructive pulmonary disease or advanced cancer.

BACKGROUND: Physicians often report that they are reluctant to discuss prognosis for life-threatening illnesses with patients and family out of concern for destroying their hope, yet there is little empirical research describing how patients and family incorporate their needs for hope with desires for prognostic information. OBJECTIVE: We conducted a qualitative study to examine the perspectives of patients, family, physicians, and nurses on the simultaneous need for supporting hope and discussing prognosis. METHODS: We conducted in-depth longitudinal qualitative interviews with patients with either advanced cancer or severe chronic obstructive pulmonary disease (COPD), along with their family, physicians, and nurses. We used principles of grounded theory to analyze the transcripts and evaluated a conceptual model with four diagrams depicting different types of approaches to hope and prognostic information. RESULTS: We interviewed 55 patients, 36 family members, 31 physicians, and 25 nurses representing 220 hours of interviews. Asking patients directly "how much information" they wanted was, by itself, not useful for identifying information needs, but in-depth questioning identified variability in patients' and family members' desires for explicit prognostic information. All but 2 patients endorsed at least one of the diagrams concerning the interaction of hope and prognostic information and some patients described moving from one diagram to another over the course of their illness. Respondents also described two different approaches to communication about prognosis based on the diagram selected: two of the four diagrams suggested a direct approach and the other two suggested a cautious, indirect approach. CONCLUSIONS: This study found important variability in the ways different patients with life-limiting illnesses approach the interaction of wanting support for hope and prognostic information from their clinicians. The four-diagram approach may help clinicians understand individual patients and families, but further research is needed to determine the utility of these diagrams for improving communication about end-of-life care.

Measuring and improving the quality of dying and death.

Improving end-of-life experience is a major challenge to successful aging. Deaths that are reasonably free of discomfort, in accordance with patients' wishes, and within acceptable professional and ethical standards are high-quality deaths. The authors developed a 31-item measure of the quality of dying and death and applied it in a community sample and a sample of hospice enrollees. Scores on the Quality of Dying and Death Instrument and measures of perceived quality of care were collected from patients' loved ones after death. Higher overall after-death ratings of the quality of care received from all providers and from physicians were associated with higher-quality dying and death. How well patients' symptoms were controlled in the community study and how well wishes were followed and treatments were explained in the hospice study were associated with higher-quality dying. Major challenges to end-of-life research include recruiting representative population samples, given widespread reluctance of patients and loved ones to participate in research at the end of life; important variation in evaluations among different reporters after death; reluctance of loved ones to assign negative evaluations to dying experiences after death; and the highly individual and dynamic nature of dying experiences. Overcoming these challenges is of great importance in the search for the social, organizational, and individual determinants of high-quality dying in the U.S. cultural and health care context.