Patient-clinician communication about end-of-life care for Dutch and US patients with COPD.

Improving patient-clinician communication about end-of-life care is important in order to enhance quality of care for patients with chronic obstructive pulmonary disease (COPD). Our objective was to compare quality of patient-clinician communication about end-of-life care, and endorsement of barriers and facilitators to this communication in the Netherlands and the USA. The present study was an analysis of survey data from 122 Dutch and 391 US outpatients with COPD. We compared quality of patient-clinician communication about end-of-life care (Quality of Communication questionnaire) and barriers and facilitators to communication about end-of-life care (Barriers and Facilitators Questionnaire) between the Netherlands and the USA, controlling for patients' demographic and illness characteristics. Although Dutch patients in this study had worse lung function and disease-specific health status than US patients, Dutch patients reported lower quality of communication about end-of-life care (median score 0.0 (interquartile range 0.0-2.0) versus 1.4 (0.0-3.6); adjusted p<0.005). Clinicians in both countries rarely discussed life-sustaining treatment preferences, prognoses, dying processes or spiritual issues. Quality of communication about end-of-life care needs to improve in the Netherlands and the USA. Future studies to improve this communication should be designed to take into account international differences and patient-specific barriers and facilitators to communication about end-of-life care.

Functional status and perceived quality of life in adults with and without chronic conditions.

The objective of this study was to evaluate the association between self-reported functional status and quality of life in adults with and without chronic conditions. Data were obtained on functional status (Sickness Impact Profile, SIP), and perceived quality of life (Perceived Quality of Life Scale, PQoL) from 454 persons in nine groups with widely varying levels of functional status and disability. Multiple regression was used to analyze the association controlling for demographic characteristics (age, gender, educational level, income, marital status), self-rated health status, and depressive symptoms. PQoL was lowest for persons using wheelchairs and highest for older well adults. Scores decreased as SIP scores increased. Overall, being older, reporting better functional status, and having fewer depressive symptoms were significantly associated with higher quality of life (adjusted R(2) = 0.60). This pattern held for most subgroups, although the association was much lower for adults with AIDS and younger well adults where ceiling effects were observed in functional status. Functional status and perceived quality of life are highly associated but are distinct in many populations. Depressive symptoms and self-rated health are important mediators of the relationship to include in future studies. Amelioration of depressive symptoms through environmental modification and individual treatment are potential strategies for improving on this association in adults with chronic conditions.

Evaluating the quality of dying and death.

We propose a model for evaluating the quality of dying and death based on concepts elicited from literature review, qualitative interviews with persons with and without chronic and terminal conditions, and consideration of desirable measurement properties. We define quality of dying and death as the degree to which a person's preferences for dying and the moment of death agree with observations of how the person actually died, as reported by others. Expected level of agreement is modified by circumstances surrounding death that may prevent following patient's prior preferences. Qualitative data analysis yielded six conceptual domains: symptoms and personal care, preparation for death, moment of death, family, treatment preferences, and whole person concerns. These domains encompass 31 aspects that can be rated by patients and others as to their importance prior to death and assessed by significant others or clinicians after death to assess the quality of the dying experience. The proposed model uses personal preferences about the dying experience to inform evaluation of this experience by others after death. This operational definition will guide validation of after-death reports of the quality of dying experience and evaluation of interventions to improve quality of end-of-life care.

Patient-physician communication about end-of-life care for patients with severe COPD.

Since patients with chronic obstructive pulmonary disease (COPD) infrequently discuss treatment preferences about end-of-life care with physicians, the goal of the present study was to identify which specific areas of communication about end-of-life care occur between patients with severe COPD and their physicians, and how patients rate the quality of this communication. A total of 115 patients with oxygen-dependent COPD, identified in pulmonary clinics in three hospitals and through an oxygen delivery company, were enrolled in this study. A 17-item quality of communication questionnaire (QOC) was administered to patients, along with other measures, including satisfaction with care. The patients reported that most physicians do not discuss how long the patients have to live, what dying might be like or patients' spirituality. Patients rated physicians highly at listening and answering questions. Areas patients rated relatively low included discussing prognosis, what dying might be like and spirituality/religion. Patients' assessments of physicians' overall communication and communication about treatment correlated well with the QOC. Patients' overall satisfaction with care also correlated significantly with the QOC. In conclusion, this study identifies areas of communication that physicians do not address and areas that patients rate poorly, including talking about prognosis, dying and spirituality. These areas may provide targets for interventions to improve communication about end-of-life care for patients with chronic obstructive pulmonary disease. Future studies should determine the responsiveness of these items to interventions, and the effect such interventions have on patient satisfaction and quality of care.

The family conference as a focus to improve communication about end-of-life care in the intensive care unit: opportunities for improvement.

The intensive care unit (ICU) represents a hospital setting in which death and discussion about end-of-life care are common, yet these conversations are often difficult. Such difficulties arise, in part, because a family may be facing an unexpected poor prognosis associated with an acute illness or exacerbation and, in part, because the ICU orientation is one of saving lives. Understanding and improving communication about end-of-life care between clinicians and families in the ICU is an important focus for improving the quality of care in the ICU. This communication often occurs in the "family conference" attended by several family members and members of the ICU team, including physicians, nurses, and social workers. In this article, we review the importance of communication about end-of-life care during the family conference and make specific recommendations for physicians and nurses interested in improving the quality of their communication about end-of-life care with family members. Because excellent end-of-life care is an important part of high-quality intensive care, ICU clinicians should approach the family conference with the same care and planning that they approach other ICU procedures. This article outlines specific steps that may facilitate good communication about end-of-life care in the ICU before, during, and after the conference. The article also provides direction for the future to improve physician-family and nurse-family communication about end-of-life care in the ICU and a research agenda to improve this communication. Research to examine and improve communication about end-of-life care in the ICU must proceed in conjunction with ongoing empiric efforts to improve the quality of care we provide to patients who die during or shortly after a stay in the ICU.