Perceptions by Family Members of the Dying Experience of Older and Seriously Ill Patients

The death we fear most is dying in pain, unnoticed, and isolated from loved ones. Concern about such an undignified and difficult death has engendered the debate over authorizing voluntary active euthanasia and physician-assisted suicide [1-3]. Death is fundamental to the nature of being human. Surprisingly, however, little research has focused on describing or improving the experience of dying. Seale and Cartwright [4] reported on the experience of dying in a population in England. In the United States, only two substantial cohort studies have been published: a recent study by the National Institute of Aging, in which the families of persons dying in a small region of Connecticut were interviewed [5]; and Osler's examination, almost a century ago, of 486 consecutive deaths at Johns Hopkins Hospital [6]. Other than data on pain in patients with cancer [7, 8], reliable information about patients' symptoms, emotions, treatment, and health as they approach death is largely unavailable. Yet such information is essential in planning health services, educating practitioners, framing problems, and assessing proposed reforms. The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT) and the Hospitalized Elderly Longitudinal Project (HELP) have primarily sought to understand and improve decision making for seriously ill and elderly hospitalized patients. In SUPPORT, all patients who were hospitalized at one of five participating centers during 4 years (1989-1991, 1992-1994) and were in the advanced stages of at least one of nine medical conditions were enrolled [9-11]. In HELP, a random sample of persons 80 years of age and older who were hospitalized in one of four of these centers during 1994 was enrolled. The Hospitalized Elderly Longitudinal Project was intended only to describe the largely unexamined experience of elderly hospitalized persons. However, SUPPORT also studied an intervention-improved prognostic and subjective information and the efforts of specially trained nurse specialists-to enhance communication and accelerate decision making. The SUPPORT intervention targeted improvement in the following areas: time before orders against resuscitation; agreement between physician and patient about orders against resuscitation; time in the intensive care unit, in a coma, or on a ventilator before death; alleviation of pain; and use of resources. The intervention was ineffectual in improving any of these measures [10]. Both studies included very sick and elderly persons, many of whom died during the follow-up period. Therefore, these databases included much information that described the experience of patients who turned out to be near death. Here, we report the ways in which the patients' surrogate decision makers, who were usually close family members, recalled the patients' health, symptoms, functional state, emotional state, preferences for care, use of life-sustaining treatments, and site of death. Methods Study Sites and Study Sample The patient selection and data collection methods used by SUPPORT are reported elsewhere [10-13]. Our analysis focused primarily on patients who died and for whom a surrogate decision maker completed an interview about the experience of dying. For patients in SUPPORT, we examined deaths that occurred within 6 months of enrollment; patient deaths in HELP occurred within 1 year of enrollment. From June 1989 to June 1991 and from January 1992 to January 1994, SUPPORT enrolled all patients who met the study entry criteria at five hospitals: Beth Israel Hospital, Boston; MetroHealth Medical Center, Cleveland; Duke University Hospital, Durham, North Carolina; St. Joseph's Hospital, Marshfield, Wisconsin; and the University of California at Los Angeles Hospital, Los Angeles. Entry criteria required that patients be in the advanced stages of one of the following conditions: coma, acute respiratory failure, multiple organ system failure with sepsis or a malignant condition, chronic obstructive pulmonary disease, congestive heart failure, cirrhosis, colon cancer, or non-small-cell lung cancer [11-13]. These criteria were designed so that the cohort would have an aggregate 6-month mortality rate of about 50%. Patients were excluded if they died or were discharged within 48 hours of hospital admission; if they were younger than 18 years of age; if, at the time of hospitalization, they were scheduled to be discharged within 72 hours; if they had the acquired immunodeficiency syndrome (AIDS) or multiple trauma; if they were pregnant; or if they did not speak English. From February to November 1994, HELP enrolled persons who were 80 years of age or older at four institutions: Beth Israel Hospital, MetroHealth Medical Center, St. Joseph's Hospital, and the University of California at Los Angeles Hospital. Patients were included regardless of diagnosis, but they were excluded if they had elective surgery, were discharged within 48 hours of admission, had AIDS, or had multiple trauma. Institutions with a large volume of elderly admissions applied random sampling so that each of the four institutions enrolled an equal number of elderly patients. Data Collection Between 4 and 10 weeks after a patient's death, the patient's surrogate decision maker was interviewed about the circumstances of the death. The surrogate was defined as the person who would have made decisions if the patient had been unable to do so. During this interview, the surrogate reported the location in which death occurred; the patient's health status; the patient's ability to perform self-care activities, as measured by a modified version of the Katz Activities of Daily Living (ADL) scale [14]; the patient's consciousness and ability to communicate; the patient's symptoms; the presence of anxiety or depression in the patient, as measured by the Profile of Mood State subscales [15]; the patient's preferences about medical care; and the medical treatments used in the last 3 days of the patient's life. The interviews done for patients in SUPPORT phase I, SUPPORT phase II, and HELP were identical in timing and administration and were similar in content. Variations in interviews primarily reflect our increasing experience and are outlined below and in the Appendix Table. Appendix Table 1.Appendix Table: Interview Content in the Three Phases of Data Collection* For patients in SUPPORT phase I, surrogates were asked about the following symptoms: pain, nausea, confusion, shortness of breath, sadness, anxiety, and fatigue. The surrogate stated the amount of time in the patient's last 3 days of life during which the patient had the symptom; the response categories used were not at all, occasionally, about half of the time, most of the time, and all of the time. For patients who had a given symptom during the last 3 days of life, the surrogate characterized the severity of the symptom as not at all severe, moderately severe, or extremely severe. We classified a symptom as severe if the surrogate noted that the patient had the symptom one half of the time or more and the surrogate considered the symptom to be of at least moderate severity. For patients in SUPPORT phase II and HELP, surrogates were asked about only three symptoms: pain, nausea, and confusion. Only the SUPPORT phase I interviews asked whether the patients felt alone and isolated and how the patients felt about their illnesses during the last 3 days of life. To find out how the patients felt about their illnesses, we asked five questions about the degree to which the patients felt concern about needing help from others, were satisfied with their lives, had difficulty tolerating physical symptoms and problems, and thought themselves a burden. Surrogate responses stating that patients were somewhat or very much troubled are reported together to simplify presentation of the data. Questions about the patients' emotional state and symptoms were asked only for patients who were reported to have been conscious and able to communicate for at least some of the time during the last 3 days of life. The SUPPORT phase II and HELP interviews included questions about the use and role of advance directives in medical decision making and about patients' preferences regarding care. Preferences about care were ascertained with the following question: Thinking of the time from (patient's) last hospitalization to (his/her) death, did (he/she) prefer a course of treatment that focused on extending life as much as possible, even if it meant more pain and discomfort, or on a plan of care that focused on relieving pain and discomfort as much as possible, even if it meant not living as long? As follow-up to this question, surrogates were asked to state the degree to which the patients' preferences about medical treatment were followed. Surrogates chose one of the following responses: a great deal, very much, moderately, very little, or not at all. We classified care as potentially inconsistent with patient preferences if the surrogate chose one of the latter three responses. In all three data collection efforts, surrogates reported whether resuscitation was attempted at the patient's death and whether the patient received tube feedings in the last 3 days of life. A question about whether the patient was attached to a ventilator in the last 3 days of life was available only for the SUPPORT phase II and HELP cohorts. Medical Record Data Hospital records were abstracted by nurses who were trained at a central location and received ongoing supervision to ensure reliable data collection. Concurrent abstraction included the physiologic indicators of disease severity necessary for calculating a SUPPORT prognostic model [13]; the Glasgow coma scale score [16]; length of stay; and date of death, if the participant died in the hospital. Statistical Analysis We compared patients about whom interviews were given with patients about whom interviews were not given with regard t