William Breitbart

Effect of spiritual well-being on end-of-life despair in terminally-ill cancer patients

BACKGROUND The importance of spirituality in coping with a terminal illness is becoming increasingly recognised. We aimed to assess the relation between spiritual well-being, depression, and end-of-life despair in terminally-ill cancer patients. METHODS 160 patients in a palliative care hospital with a life expectancy of less than 3 months were interviewed with a series of standardised instruments, including the functional assessment of chronic illness therapy-spiritual well-being scale, the Hamilton depression rating scale, the Beck hopelessness scale, and the schedule of attitudes toward hastened death. Suicidal ideation was based on responses to the Hamilton depression rating scale. FINDINGS Significant correlations were seen between spiritual well-being and desire for hastened death (r=-0.51), hopelessness (r=-0.68), and suicidal ideation (r=-0.41). Results of multiple regression analyses showed that spiritual well-being was the strongest predictor of each outcome variable and provided a unique significant contribution beyond that of depression and relevant covariates. Additionally, depression was highly correlated with desire for hastened death in participants low in spiritual well-being (r=0.40, p<0.0001) but not in those high in spiritual well-being (r=0.20, p=0.06). INTERPRETATION Spiritual well-being offers some protection against end-of-life despair in those for whom death is imminent. Our findings have important implications for palliative care practice. Controlled research assessing the effect of spirituality-based interventions is needed to establish what methods can help engender a sense of peace and meaning.

The memorial delirium assessment scale

We conducted two studies with medically hospitalized cancer and acquired immunodeficiency syndrome (AIDS) patients to assess the reliability and validity of a new measure of delirium severity, the Memorial Delirium Assessment Scale (MDAS). The first study used multiple raters who jointly administered the MDAS to 33 patients, 17 of whom met DSM III-R/DSM IV criteria for delirium, 8 met diagnostic criteria for another cognitive impairment disorder (for example, dementia), and 8 had non-cognitive psychiatric disorders (for example, adjustment disorder). Results indicate high levels of inter-rater reliability for the MDAS (0.92) and the individual MDAS items (ranging from 0.64 to 0.99), as well as high levels of internal consistency (coefficient alpha = 0.91). Mean MDAS ratings differed significantly between delirious patients and the comparison sample of patients with other cognitive impairment disorders or no cognitive impairment (P < 0.0002). The second study compared MDAS ratings of 51 medically hospitalized delirious patients with cancer and AIDS made by one clinician to ratings on several other measures of delirium (Delirium Rating Scale, clinicians ratings of delirium severely) and cognitive functioning (Mini-Mental State Examination) made by a second clinician. Results demonstrated a high correlation between MDAS scores and ratings on the Delirium Rating Scale (r = 0.88, p < 0.0001), the Mini-Mental State Examination (r = -0.91, P < 0.0001), and clinicians global ratings of delirium severity (r = 0.89, P < 0.0001). Thus, our findings indicate that the MDAS is a brief, reliable tool for assessing delirium severity among medically ill populations that can be reliably scored by multiple raters. The MDAS is highly correlated with existing measures of delirium and cognitive impairment, yet offers several advantages over these instruments for repeated assessments which are often necessary in clinical research.

Cancer-Related Fatigue: Prevalence of Proposed Diagnostic Criteria in a United States Sample of Cancer Survivors

PURPOSE To evaluate the proposed cancer-related fatigue (CRF) diagnostic criteria in a sample of cancer survivors. More accurate prevalence estimates of CRF may result in improved diagnosis and management of one of the most common symptoms associated with cancer and its treatment. METHODS Three hundred seventy-nine individuals who had been treated with chemotherapy, either alone or in combination with radiation therapy, were surveyed. Patients were asked background questions about their current condition, their medical history, and the frequency of fatigue during their chemotherapy. Additionally, patients who reported experiencing fatigue at least a few days each month during treatment were asked a series of questions about the impact of fatigue on their daily functioning. RESULTS One hundred forty-one (37%) individuals reported at least 2 weeks of fatigue in the previous month. Of the respondents who had received their last treatment more than 5 years ago, 33% still reported at least a 2-week period of fatigue in the month before the interview. Evaluation of the proposed criteria revealed that 17% of respondents met at least two criteria for CRF. CONCLUSION The prevalence of diagnosable CRF in the individuals in this sample, most of whom had completed treatment more than 1 year ago, was 17%-lower than expected based on previous reports that have used less-strict criteria. In a sizable number of people, CRF persists well beyond active treatment and should be a focus of intervention. Although they will require replication in other samples and clinical validation, these formal diagnostic criteria can be a step toward common language and a better understanding of the severity range and persistence of CRF.

Meaning-centered group psychotherapy for patients with advanced cancer: a pilot randomized controlled trial

Objectives: An increasingly important concern for clinicians who care for patients at the end of life is their spiritual well‐being and sense of meaning and purpose in life. In response to the need for short‐term interventions to address spiritual well‐being, we developed Meaning Centered Group Psychotherapy (MCGP) to help patients with advanced cancer sustain or enhance a sense of meaning, peace and purpose in their lives, even as they approach the end of life.

Spirituality and meaning in supportive care: spirituality- and meaning-centered group psychotherapy interventions in advanced cancer

Existential and spiritual issues are at the frontier of new clinical and research focus in palliative and supportive care of cancer patients. As concepts of adequate supportive care expand beyond a focus on pain and physical symptom control, existential and spiritual issues such as meaning, hope and spirituality in general have received increased attention from supportive care clinicians and clinical researchers. This paper reviews the topics of spirituality and end-of-life care, defines spirituality, and suggests measures of spirituality that deal with two of its main components: faith/religious beliefs and meaning/spiritual well-being. These two constructs of spirituality are reviewed in terms of their role in supportive care. Finally, a review of existing psychotherapeutic interventions for spiritual suffering are reviewed and a novel meaning-centered group psychotherapy for advanced cancer patients is described.

Effect of dignity therapy on distress and end-of-life experience in terminally ill patients: a randomised controlled trial

BACKGROUND Dignity therapy is a unique, individualised, short-term psychotherapy that was developed for patients (and their families) living with life-threatening or life-limiting illness. We investigated whether dignity therapy could mitigate distress or bolster the experience in patients nearing the end of their lives. METHODS Patients (aged ≥18 years) with a terminal prognosis (life expectancy ≤6 months) who were receiving palliative care in a hospital or community setting (hospice or home) in Canada, USA, and Australia were randomly assigned to dignity therapy, client-centred care, or standard palliative care in a 1:1:1 ratio. Randomisation was by use of a computer-generated table of random numbers in blocks of 30. Allocation concealment was by use of opaque sealed envelopes. The primary outcomes--reductions in various dimensions of distress before and after completion of the study--were measured with the Functional Assessment of Chronic Illness Therapy Spiritual Well-Being Scale, Patient Dignity Inventory, Hospital Anxiety and Depression Scale, items from the Structured Interview for Symptoms and Concerns, Quality of Life Scale, and modified Edmonton Symptom Assessment Scale. Secondary outcomes of self-reported end-of-life experiences were assessed in a survey that was undertaken after the completion of the study. Outcomes were assessed by research staff with whom the participant had no previous contact to avoid any possible response bias or contamination. Analyses were done on all patients with available data at baseline and at the end of the study intervention. This study is registered with ClinicalTrials.gov, number NCT00133965. FINDINGS 165 of 441 patients were assigned to dignity therapy, 140 standard palliative care, and 136 client-centred care. 108, 111, and 107 patients, respectively, were analysed. No significant differences were noted in the distress levels before and after completion of the study in the three groups. For the secondary outcomes, patients reported that dignity therapy was significantly more likely than the other two interventions to have been helpful (χ(2)=35·50, df=2; p<0·0001), improve quality of life (χ(2)=14·52; p=0·001), increase sense of dignity (χ(2)=12·66; p=0·002), change how their family saw and appreciated them (χ(2)=33·81; p<0·0001), and be helpful to their family (χ(2)=33·86; p<0·0001). Dignity therapy was significantly better than client-centred care in improving spiritual wellbeing (χ(2)=10·35; p=0·006), and was significantly better than standard palliative care in terms of lessening sadness or depression (χ(2)=9·38; p=0·009); significantly more patients who had received dignity therapy reported that the study group had been satisfactory, compared with those who received standard palliative care (χ(2)=29·58; p<0·0001). INTERPRETATION Although the ability of dignity therapy to mitigate outright distress, such as depression, desire for death or suicidality, has yet to be proven, its benefits in terms of self-reported end-of-life experiences support its clinical application for patients nearing death. FUNDING National Cancer Institute, National Institutes of Health.

The undertreatment of pain in ambulatory AIDS patients.

&NA; Pain is highly prevalent in individuals with HIV disease, yet is often overlooked as a symptom requiring clinical intervention. We evaluated the adequacy of analgesic management for pain and identified predictors of pain undertreatment in a sample of 366 ambulatory AIDS patients using a prospective cross‐sectional survey design. Two hundred and twenty‐six of the 366 ambulatory AIDS patients surveyed reported “persistent or frequent” pain over the 2 week period prior to the survey. Adequacy of analgesic therapy was assessed using the Pain Management Index (PMI ‐ a measure derived from the Brief Pain Inventory) and the type and frequency of analgesic medications prescribed for pain. Results indicated that nearly 85% of patients were classified as receiving inadequate analgesic therapy based on the PMI. Less than 8% of the 110 patients who reported “severe” pain were prescribed a “strong” opioid (e.g., morphine), as suggested by published guidelines. Adjuvant analgesic drugs (e.g., antidepressant medications) were prescribed in only 10% of the patients. Women, less educated patients, and patients who reported injection drug use as their HIV transmission risk factor were most likely to have received inadequate analgesic therapy. These results demonstrate the alarming degree of undertreatment of pain in ambulatory patients with AIDS, and indicates the need to improve the management of AIDS‐related pain in this underserved population. Future research should elucidate the factors that impede adequate pain management in order to overcome obstacles to adequate treatment.

Pain in ambulatory AIDS patients. I: Pain characteristics and medical correlates

&NA; The characteristics and impact of pain were evaluated in a prospective cross‐sectional survey of 438 ambulatory AIDS patients recruited from health care facilities in New York City. More than 60% of the patients reported ‘frequent or persistent pain’ during the 2 wks preceding the study. Patients with pain reported an average of 2.5 different pains. On the 0–10 numerical scale of the Brief Pain Inventory (BPI), mean pain intensity ‘on average’ was 5.4 (SD = 2.2; range = 0–10), and mean pain ‘at its worst’ was 7.4 (SD = 2.0; range = 1–10). The pain‐related functional interference index (sum of the seven item BPI subscale) was 42.6 (SD = 17.2; range = 0–70). Demographic variables were not associated with the presence of pain, but the number of current HIV‐related symptoms, treatment for HIV‐related infections, and the absence of antiretroviral medications were significantly associated with the presence of pain. Female gender, non‐Caucasian race, and number of HIV‐related physical symptoms were significantly associated with pain intensity. Presence of pain and increasing pain intensity were significantly associated with greater impairment in functional ability (Karnofsky Performance Status, BPI functional interference index) and physical symptom distress (Memorial Symptom Assessment Scale). Results demonstrate high levels of pain and pain‐related functional impairment among patients with AIDS. The presence and intensity of pain are associated with more advanced HIV disease and pain intensity is also associated with demographic factors (gender, race).

Symptom Prevalence, Characteristics, and Distress in AIDS Outpatients ☆

Symptom distress is an important but poorly characterized aspect of quality of life in AIDS patients. To assess and characterize the symptoms and symptom distress associated with AIDS, 504 ambulatory patients with AIDS were evaluated between December, 1992 and December, 1995. The assessment included measures of symptom distress, physical and psychosocial functioning, and demographic and disease-related factors. Patients described symptoms during the previous week using the Memorial Symptom Assessment Scale Short Form (MSAS-SF), a validated measure of physical and psychological symptom distress. The mean age was 38.6 years (range 18-69); 56% were male. African-Americans comprised 40% of the sample, Caucasians 35%, and Hispanics 23%. Ninety-three percent had CD4+ T-cell counts below 500, and 66% had counts below 200; 69% were classified in CDC category C (history of AIDS-defining conditions). Fifty-two percent reported intravenous drug use. Karnofsky performance status was > or = 70 in 80% of the patients. No patients were taking protease inhibitors. The mean (+/- SD) number of symptoms was 16.7 +/- 7.3. The most prevalent symptoms were worrying (86%), fatigue (85%), sadness (82%), and pain (76%). Patients with Karnofsky performance scores < 70 had more symptoms and higher symptom distress scores than patients with scores > or = 70 (21.2 +/- 6.5 vs. 15.6 +/- 7.1 symptoms/patient; 2.3 +/- 0.8 vs. 1.6 +/- 0.8 on the Global Distress Index [GDI] of the MSAS-SF; P < 0.0001 for both). Patients who reported intravenous drug use as an HIV transmission factor reported more symptoms and higher overall and physical symptom distress than those who reported homosexual or heterosexual contact as their transmission factor (17.8 +/- 7.5 vs. 15.4 +/- 6.9 symptoms/patient, P = 0.0002; 1.9 +/- 0.9 vs. 1.6 +/- 0.8 on the MSAS-GDI, P = 0.002). Both the number of symptoms and symptom distress were highly associated with psychological distress and poorer quality of life; for example, r = -0.69 (P < 0.0001) between GDI scores and scores on a validated measure of quality of life. Neither gender nor CD4+ T-cell count was associated with symptom number or distress. Responses from this self-referred sample of AIDS outpatients indicate that AIDS patients experience many distressing physical and psychological symptoms and a high level of distress. Both the number of symptoms and the distress associated with them are associated with a variety of disease-related factors and disturbances in other aspects of quality of life. Symptom assessment provides information that may be valuable in evaluating AIDS treatment regimens and defining strategies to improve quality of life.

Screening, Assessment, and Management of Fatigue in Adult Survivors of Cancer: An American Society of Clinical Oncology Clinical Practice Guideline Adaptation

PURPOSE This guideline presents screening, assessment, and treatment approaches for the management of adult cancer survivors who are experiencing symptoms of fatigue after completion of primary treatment. METHODS A systematic search of clinical practice guideline databases, guideline developer Web sites, and published health literature identified the pan-Canadian guideline on screening, assessment, and care of cancer-related fatigue in adults with cancer, the National Comprehensive Cancer Network (NCCN) Clinical Practice Guidelines In Oncology (NCCN Guidelines) for Cancer-Related Fatigue and the NCCN Guidelines for Survivorship. These three guidelines were appraised and selected for adaptation. RESULTS It is recommended that all patients with cancer be evaluated for the presence of fatigue after completion of primary treatment and be offered specific information and strategies for fatigue management. For those who report moderate to severe fatigue, comprehensive assessment should be conducted, and medical and treatable contributing factors should be addressed. In terms of treatment strategies, evidence indicates that physical activity interventions, psychosocial interventions, and mind-body interventions may reduce cancer-related fatigue in post-treatment patients. There is limited evidence for use of psychostimulants in the management of fatigue in patients who are disease free after active treatment. CONCLUSION Fatigue is prevalent in cancer survivors and often causes significant disruption in functioning and quality of life. Regular screening, assessment, and education and appropriate treatment of fatigue are important in managing this distressing symptom. Given the multiple factors contributing to post-treatment fatigue, interventions should be tailored to each patients specific needs. In particular, a number of nonpharmacologic treatment approaches have demonstrated efficacy in cancer survivors.