Citations for this study: Abraham A, Kutner JS, Beaty B. Suffering at the End of Life in the Setting of Low Physical Symptom Distress. Journal of Palliative Medicine, 2006. 9(3):658-665;
Kutner JS, Bryant LL, Beaty BL, Fairclough DL. Symptom Distress and Quality of Life Assessment at the End of Life: The Role of Proxy Response. Journal of Pain and Symptom Management,. 2006. 32(4):300-310
Kutner JS, Bryant LL, Beaty BL, Fairclough DL. Time Course and Characteristics of Symptom Distress and Quality of Life at the End of Life. In press, Journal of Pain and Symptom Management. November, 2006.
The citation for this abstract: Symptom Distress and Quality of Life in the Last Days of Life J.S. KUTNER, B. RENFREW, C.T. KASSNER, D.S. MAIN, J.F. STEINER; University of Colorado Denver, Denver, Colorado
ABSTRACT FOR “NATURAL COURSE OF SYMPTOMS IN HOSPICE PATIENTS”
BACKGROUND: Given the negative impact of symptom distress on quality of life, we sought to describe symptom distress and quality of life in the last days of life among persons receiving hospice/palliative care.
METHODS: Prospective cohort study conducted in the Population-based Palliative Care Research Network (PoPCRN) among English-speaking adults. This abstract presents the nurse-reported data collected at the last assessment prior to death, using the Condensed Memorial Symptom Assessment Scale (MSAS) and the McGill Quality of Life Questionnaire (MQOL).
RESULTS: Symptom and quality of life data are available for 67 individuals from 9 PoPCRN sites. 55% were female, 94% were non-Hispanic white, 59% had a cancer diagnosis, and 38% were married. The mean age was 71 years (range 33-100). The data were collected 0 - 32 days prior to death (median=6). Patients experienced, on average, 11 symptoms (SD 4.9, range 0 - 17). The most prevalent symptoms were also the most distressful. The 5 most common symptoms were: lack of energy (95%), pain (82%), lack of appetite (81%), difficulty concentrating (76%) and feeling drowsy (74%). MSAS mean scores (range 0 - 4; higher number=more symptom distress) indicate that these symptoms were also distressful: lack of energy=3.3, pain=2.2, lack of appetite=2.2, difficulty concentrating=2.2, feeling drowsy=2.0 and Global Distress Index=1.9. Despite this significant symptom burden and the proximity of data collection to time of death, the overall quality of life of these patients was fair, as demonstrated by mean total MQOL score (range 0 - 10; 0=bad, 10=good)=5.5.
CONCLUSION: There was a significant unrelieved symptom burden in the days preceding death among these hospice/palliative care patients. Given the hospice/palliative care setting, the extent to which symptoms were prevalent and distressful is particularly troublesome. These data indicate a need for better understanding of and interventions for relieving symptom distress in the days prior to death.
Abstract presented at the American Academy of Hospice and Palliative Medicine Annual Meeting, 2003.
This abstract was presented at the Society of General Internal Medicine Conference, Spring 2003. SYMPTOM DISTRESS AND QUALITY OF LIFE AT THE END OF LIFE: A COMPARISON OF PATIENT, CAREGIVER AND NURSE ASSESSMENTS, by JS KUTNER, D FAIRCLOUGH, B BEATY, CT KASSNER, and JF STEINER, University of Colorado Denver, Denver, CO.
BACKGROUND: We described and compared symptom distress and quality of life among persons receiving hospice/palliative care from the perspective of patients and proxies (caregivers and nurses). We hypothesized that 1) proxy respondents would rate symptom (sx) distress higher and quality of life (QOL) lower than would patients, 2) patient and nurse assessments would be highly correlated, and 3) correlations would be higher for physical than for psychological issues.
METHODS: A prospective cohort study in the Population-based Palliative Care Research Network (PoPCRN), provided data [Condensed Memorial Symptom Assessment Scale (MSAS, range 0-4, higher=more sx distress), McGill Quality of Life Questionnaire (MQOL, range 0-10, 0=bad, 10=good)] at hospice admission, 1 and 2 weeks, monthly, and at death or discharge. English-speaking adult patients (P) receiving care from PoPCRN sites (if able), their caregivers (C) (if available), and nurses (N) participated. We used a multivariate mixed effects model to assess the relationships between the 3 groups.
RESULTS: 86 patients from 10 hospices participated: 53% female, 60% with a cancer diagnosis, 95% non-Hispanic white, mean age 72 (range 33-100). Respondents differed on only 3 of the 10 possible sx and QOL scales/subscales (see table): 1) Nurses rated support-related QOL lower than caregivers or patients, 2) Caregivers rated physical well-being-related QOL lower than nurses or patients, and 3) Nurses rated physical sx distress lower than caregivers or patients. No differences were found for any of the other MQOL (overall, total, existential well-being, psychological, physical sx) or MSAS (global distress index, psychological) scores. Overall, nurse & patient scores appeared to be more highly correlated than were the caregiver & patient. Correlations tended to be lower for physical symptom-related QOL and higher for overall QOL (see table).
CONCLUSION: Respondent types differed little in their ratings of sx or QOL. Where differences did exist, proxies rated both QOL and sx distress lower than did patients. The assessments of all respondents correlated only moderately across all QOL and sx distress measures. Clinicians should seek the perspectives of all involved parties when seeking to decrease sx distress and maximize QOL at the end of life. From a research perspective, these findings indicate the need to incorporate data from all available respondents when one encounters missing sx or QOL data.