PURPOSE:
Maximizing quality of life (QOL) at the end of life (EOL) is a central goal of hospice and palliative care. The purpose of this study was to describe QOL among patients receiving hospice care and to determine whether QOL at the EOL is associated with particular patient characteristics, such as diagnosis or functional status.
METHODS:
Cross-sectional study conducted in the Population-based Palliative Care Research Network (PoPCRN) among English-speaking adults who consented and had a Short Portable Mental Status Questionnaire (SPMSQ) adjusted score of less than 5. Data were collected via an interviewer-administered questionnaire. QOL was measured by the McGill QOL Questionnaire (MQOL). Descriptive statistics, t-tests, and ANOVA (SPSS version 10) were used to describe the population and determine associations between the variables of interest.
RESULTS:
66/82 (80%) individuals from 14 PoPCRN sites consented to and were able to participate. 56% were female, 89% were white, 39% were cared for at home, and 53% had a cancer diagnosis. The median age was 76 years, median Karnofsky score 50%, and median time between hospice admit and interview was 49 days. MQOL responses (range 0 - 10; 0=bad, 10=good) indicate that these patients had few physical symptoms, but the ones they had were problematic (single troublesome symptom score=4.4). The MQOL subscale scores indicate that these patients were less troubled by psychosocial and existential issues than by physical symptoms: Total MQOL score=7.1, Physical well-being score=6.0, Physical symptom overall score=5.9, Psychological symptom score=7.1, Existential well-being score=7.4, Support score=8.6. There were no significant associations between age, marital status, gender or length of hospice care and any of the QOL scores. A Karnofsky score of less than 50% was associated with worse Existential well-being (6.9 vs. 7.9, p=0.017) while a cancer diagnosis was associated with greater existential well-being (7.8 vs. 6.9, p=0.047). Being cared for at home and a cancer diagnosis were both associated with a greater sense of Support (9.2 vs. 8.2, p=0.005; 9.0 vs. 8.1, p=0.042).
CONCLUSIONS:
Among this older, terminally ill population receiving hospice care, whose functional level was poor and for whom physical symptoms were troublesome, quality of life persisted. Quality of life was particularly preserved among patients with cancer, those who were cared for at home and those who had better functional status.
The abstract above was submitted to the Society of General Internal Medicine Conference, Spring 2001.
QUALITY OF LIFE PERSISTS AT THE END OF LIFE, by Jean S. Kutner, David E. Nowels, Cordt Kassner, Lucinda L. Bryant, University of Colorado Health Sciences Center, Denver, CO
BACKGROUND:
Quality end-of-life care requires meeting patients' physical needs and attending to the social, psychological and spiritual dimensions of care. Little is known about the prevalence and types of psychosocial and spiritual issues experienced by patients at the end of life.
PURPOSE:
To describe the prevalence of psychosocial and spiritual issues among hospice patients.
METHODS:
Cross-sectional study conducted in the Population-based Palliative Care Research Network (PoPCRN) among English-speaking adults (age > 18 years) who consented and had a Short Portable Mental Status Questionnaire adjusted score of less than 5. The study instrument was adapted from existing instruments, hospice staff focus groups, and interviews with hospice patients. Data were collected via an interviewer-administered questionnaire (mean completion time 33 minutes). Descriptive statistics (SPSS version 10.0) describe the study population and response frequencies.
RESULTS:
Seventy seven percent (63/82) individuals from 14 PoPCRN sites consented to and were able to participate. Fifty nine percent where female, 90% were white, 37% were cared for at home, and 56% had a cancer diagnosis. The median age was 76 years, median Karnofsky score 50%, and median time between hospice admit and interview 49 days. McGill Quality of Life (QOL) Questionnaire responses (range 0 - 10; 10; 0=bad, 10=good) indicate that these patients suffered from physical symptoms, but were less troubled by psychosocial and existential issues (Mean scores: Total QOL=6.4, Physical well-being=6.0, Physical symptoms=3.3, Psychological symptoms=7.0, Existential well-being=7.4, Support=8.4). Respondents had a strong spiritual connection: 85% had a personal relationship with a power greater than themselves; 82% agreed that spiritual health contributes to physical health; and 82% agreed that they found serenity in accepting things as they are. There was also a strong sense of hope: 90% believed that life has value and worth; 87% believed that each day has potential; and 82% agreed that they have a positive outlook on life. Twenty percent thought that their illness would get better. Respondents did not express anxiety or fear about death. Seventy two percent agreed that they were looking forward to a new life after they died. There were concerns about the dying process: 33% were afraid of a long, slow dying; 33% worried about being helpless; and 28% feared dying a painful death. While 63% felt at ease with their current situation, 68% were concerned about how their illness was affecting their family. Financial and legal issues did not concern most of these individuals (27% and 18% expressed concern, respectively).
CONCLUSIONS:
These findings speak to the strength of the human spirit. Among this older, terminally ill population receiving hospice care, whose functional level was poor and for whom physical symptoms were a significant problem, there was a strong spiritual connection, hope and quality of life persisted, and death was not feared.
The abstract above was submitted to the American Geriatric Society Conference, Spring 2001
PSYCHOSOCIAL AND SPIRITUAL ISSUES AT THE END OF LIFE, by JS Kutner, MD; DE Nowels, MD; C Kassner, MA; L Bryant, PhD; W Reiquam, MD. University of Colorado Health Sciences
Center, Denver, CO.
Slides of Aggregate Results of Study (26 slides) can be found on the PoPCRN webpage.
GENERAL COMMENTS
We have recently completed analyses of data from the study of psychosocial and spiritual issues among hospice patients. This study was the original impetus for developing the hospice research network that has developed into PoPCRN. As you are well aware, quality end-of-life care requires meeting patients' physical needs and attending to the social, psychological and spiritual dimensions of care. While these are the central tenets of excellent palliative care, little is known about the prevalence and types of psychosocial and spiritual issues experienced by persons at the end of life. The purpose of this study was thus to describe the prevalence and types of psychosocial and spiritual issues among hospice patients.
Fourteen PoPCRN hospices participated in this study, which consisted of an interviewer-administered questionnaire. Hospice and PoPCRN staff administered the survey to English-speaking adults who were cognitively intact and willing to participate in the study.
Sixty-six hospice patients participated in this study. Fifty-six percent of these patients were female, 89% were white, 39% were cared for at home, and 53% had a cancer diagnosis. The median age of the patients was 76 years. The participating patients had a relatively high functional status (average Karnofsky score of 50) and had been under hospice care for a prolonged period of time (median time between hospice admit and interview of 49 days).
Study patients completed the McGill Quality of Life Questionnaire (MQOL), which was developed and validated in the palliative care setting among cancer patients. It consists of 17 items that are scored on a 0 - 10 scale (score of 0 indicates the least desirable and 10 the most desirable situation). Scoring of the MQOL allows for calculating a Single item scale (SIS) measuring overall QOL, a Total score, and 4 subscales: Physical Symptoms, Psychological Symptoms, Existential Well-being, and Support. Study participants' MQOL scores indicate that they had few physical symptoms (single troublesome symptom score=4.4). These patients were less troubled by psychosocial and existential issues than by physical symptoms. Diagnosis, functional status, and care location were associated with QOL. Patients with a cancer diagnosis had a greater sense of Existential Well-being (7.8 vs. 6.9, p=0.047) and a greater sense of support (9.0 vs. 8.1, p=0.042) than patients with other diagnoses. Patients with worse functional status (Karnofsky score less than 50%) had a worse sense of Existential Well-being (6.9 vs. 7.9, p=0.017) than patients with better functional status. Finally, patients who were receiving care at home had a greater sense of Support (9.2 vs. 8.2, p=0.005) than patients in other care settings. There were no significant associations between age, marital status, gender or length of hospice care and any of the QOL scores
Respondents had a strong spiritual connection: 85% had a personal relationship with a power greater than themselves; 84% felt connected to something greater than themselves; 82% agreed that spiritual health contributes to physical health; and 77% felt that a spiritual force influenced events in their life. There was also a strong sense of hope: 90% believed that life has value and worth; 87% believed that each day has potential; 82% agreed that they had a positive outlook on life; and 80% were not scared about the future.
These hospice patients did not express anxiety or fear about death. Seventy-two percent agreed that they were looking forward to a new life after they died. There were concerns about the dying process: 33% were afraid of a long, slow dying; 33% worried about being helpless; and 28% feared dying a painful death. While 63% felt at ease with their current situation 68% were concerned about how their illness was affecting their family. Twenty-seven percent were bothered by the loss of their usual role. Twenty-one percent of these patients indicated that they were currently suffering. Despite being under hospice care, twenty percent thought that their illness was going to get better. Financial and legal issues did not concern most of these individuals (27% and 18% expressed concern, respectively).
The findings of this study are limited by the small sample size and the fact that they may not be representative of all patients receiving hospice care. That is, the patients who participated in this study had a relatively long hospice length of stay, relatively high Karnofsky scores. Nevertheless, these findings speak to the strength of the human spirit. Among this older, terminally ill population receiving hospice care, there was a strong spiritual connection, hope and quality of life persisted, and death was not feared. This may reflect self-selection of those who enter hospice care or, perhaps, hospice care itself.
These data do not inform us about the trajectory of psychosocial and spiritual issues throughout the course of a terminal illness. Study of these issues from the time of diagnosis of a life-threatening illness through its terminal stages is necessary to provide context for findings from this study.