Measuring and Improving the Quality of Dying and Death

Older adults face what is perhaps the ultimate challenge for successful aging: dying and death. Our deepest hopes and fears are triggered by personal experiences with dying people; the allure of technological advances; media depictions of deaths good and bad; public debates on assisted suicide; and an almost universal wish to extend life, avoid death, and avoid even thinking about dying and death. The challenge is to come to terms with dying and death so that death occurs without undue discomfort, according to one's goals and wishes, and within the context of one's beliefs and cultural traditions (1). Although often conflated at the end of life, quality of care, quality of life, and quality of dying and death may be usefully distinguished (Table 1). Most deaths in the United States occur in the hospital, and thus dying and death are influenced by access to and experience of institutions (2). The Institute of Medicine report Crossing the Quality Chasm defined high-quality health care as that based on continuous healing relationships, customization according to patient needs and values, the patient as the source of control, shared knowledge and the free flow of information, evidence-based decision making, the need for transparency, anticipation of needs, and cooperation among clinicians (3). These criteria apply equally to end-of-life care, with one necessary addition: coordination among caregivers, patients, and families (4). Other professional groups concerned with quality end-of-life care (5) and qualitative patient research (6) reinforce the content validity of these criteria. Table 1. Quality of End-of-Life Care, Quality of Life at the End of Life, and Quality of Dying and Death: Concepts and Domains To focus on the period of life closest to death, a separate domain, quality of dying and death, has been defined as a personal evaluation of the dying experience as a whole, including a subjective evaluation of patients' expectations and values (7). The Institute of Medicine Committee on End-of-Life Care defined the notion of high-quality dying as a death free from avoidable distress and suffering for patients, families, and their caregivers; in general accord with the patients' and families' wishes; and reasonably consistent with clinical, cultural, and ethical standards (1). Quality of dying emphasizes activities and feelings experienced if and when preparing for, facing, and experiencing the final months or days of life and the moment of death. We have proposed an operational definition of quality of dying: the degree to which a person's preferences for dying and the moment of death are consistent with others' observations of how the person actually died (8). We recognize that a person's wishes may be modified by circumstances surrounding death that may prevent the realization of previous preferences or may change preferences. These concepts assume that dying is recognized and that preparation is possible and valuable, a situation that describes many but not all deaths. Quality of life at the end of life can be distinguished from the quality of dying and death by virtue of a focus on functional status or the fulfillment of needs essential to living even when a person is near death, an emphasis that may or may not be recognized by patients, loved ones, or caregivers (8). Quality of life at the end of life emphasizes the experience of living a satisfactory life in the face of terminal illness (9, 10). Quality of care at the end of life is differentiated by virtue of its focus on care and on satisfaction with the care received (11). Quality of care may influence quality of dying and death and quality of life at the end of life, but the concepts and measurement differ. Use of valid and acceptable measures of experiences that truly matter to patients, loved ones, and providers is one way to evaluate and disseminate evidence-based end-of-life care (12). Using literature reviews, reviews of existing instruments, and a series of qualitative studies, we developed a self-reported measure of the quality of dying and death, the Quality of Dying and Death Instrument (available at depts.washington.edu/~eolcare) (8, 13). Full measurement, according to our definition, requires elicitation of patient preferences about dying and death before death. Patients' predeath preferences can then be compared with reports from loved ones or caregivers after death. In this paper, we suggest ways in which assessments of the quality of dying and death obtained from loved ones after death can be used to improve quality of care at the end of life. We also summarize how evaluations of the quality of care can be related to after-death ratings of the quality of dying and death. In this summary, we use results from a published community study conducted in Missoula, Montana (13), and a hospice study reported here for the first time. In addition, we suggest future research strategies to improve use and application of these measures. The Quality of Dying and Death Instrument The Quality of Dying and Death Instrument contains 31 items asking the respondent to report on and rate the quality of the dying experience in the decedent's last 7 days or, if the patient was unconscious or unresponsive throughout the last 7 days, over the last month before death. Items are rated on a scale of 0 (terrible experience) to 10 (almost perfect experience). A total score is calculated by adding the scores on all items and dividing this score by the number of items answered. This mean score is multiplied by 10 to construct a scale ranging from 0 to 100, with higher scores indicating a better quality of dying and death. Quality-of-care indicators were adapted from questionnaires from the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment (SUPPORT) (14) and from the Toolkit of Instruments to Measure End-of-Life Care (15). Quality-of-care domains covered satisfaction with care, communication, treatment appropriateness, and overall ratings of quality of care from all providers and from physicians in particular. We expected higher Quality of Dying and Death scores to be significantly and positively associated with better symptom treatment, better communication with the health care team, death at home, death according to patient preferences, and higher satisfaction with care. Ratings measured continuously were analyzed with the Pearson product moment correlation or were aggregated and evaluated by using the t-test. Reports of events measured categorically were analyzed with analyses of variance, and group differences were identified by using Scheffe post hoc procedures when all categorical response values had been endorsed. For variables in which all response values were not used or were infrequently endorsed (n 2), we grouped response categories conceptually and used pairwise t-tests. A P value less than 0.05 indicated statistical significance. The Community Study Community study results, with P values less than 0.01, indicated that death at home, better symptom treatment, better communication, and higher satisfaction with care were all associated with higher-quality dying (13). Clinicianpatient communication and clinicianfamily communication about end-of-life care were associated with a better rating of the dying experience by family members. Listening, explaining the patient's condition, and communicating in language that patients and families could understand were associated with higher-quality dying and therefore are important areas for improving quality of care. The community study also found an association between provider accessibility and the quality of the dying experience. Having someone available at night or on weekends who was familiar with the patient, having one physician who was primarily responsible for the patient's care, and having a member of the health care team who was responsible for making sure good care was delivered were significantly associated with better Quality of Dying and Death scores (P < 0.05). The Hospice Study The hospice study involved enrollees in two community hospice programs in the Seattle, Washington, area. We recruited a sample of 96 patients and their family members or loved ones. Most screened enrollees who did not participate were ineligible because of illness severity (28% [n = 1621]); estimated survival of less than 2 weeks (16.3% [n = 941]); or delirium, dementia, or fatigue that would interfere with their ability to complete an interview (26.5% [n = 1531]). Among 309 eligible individuals, 189 patients or family members declined to participate. Reasons for nonparticipation included patients' reporting poor health (13.2% [n = 25]) or lack of interest in or time for participating (13.8% [n = 26]) and family members' reporting poor health or lack of time on behalf of the patient (11.1% [n = 21]). Of the 96 patients enrolled, 79 have died, and 62 family members or loved ones have completed after-death surveys. Six loved ones have declined the after-death interview. Home hospice patients were primarily women with a diagnosis of terminal cancer, and caregivers were predominantly white, similar to the Seattle population. After-death reports were obtained primarily from spouses or children of patients or from persons who had known the decedents for more than 40 years. These reports were completed an average of 3 months after a patient's death. Higher Quality of Dying and Death scores were associated with reports of satisfaction with the amount of time providers spent with patients (way too little differed significantly from too little/just right), how often providers explained treatments (sometimes differed significantly from usually/always), and how often treatment plans were followed (sometimes differed significantly from usually/always). Higher Quality of Dying and Death scores were also associated with better ratings of care, quality of life during last days, and moment of death. The Pearson corr