Correlates of a good death and the impact of hospice involvement: findings from the national survey of households affected by cancer.

PURPOSE: Knowing how to improve the dying experience for patients with end-stage cancer is essential for cancer professionals. However, there is little evidence on the relationship between clinically relevant factors and quality of death. Also, while hospice has been linked with improved outcomes, our understanding of factors that contribute to a "good death" when hospice is involved remains limited. This study (1) identified correlates of a good death and (2) provided evidence on the impact of hospice on quality of death. METHODS: Using data from a survey of US households affected by cancer (N = 930, response rate 51 %), we fit regression models with a subsample of 158 respondents who had experienced the death of a family member with cancer. Measures included quality of death (good/bad) and clinically relevant factors including: hospice involvement, symptoms during treatment, whether wishes were followed, provider knowledge/expertise, and compassion. RESULTS: Respondents were 60 % female, 89 % White, and averaged 57 years old. Decedents were most often a respondent's spouse (46 %). While 73 % of respondents reported a good death, Hispanics were less likely to experience good death (p = 0.007). Clinically relevant factors, including hospice, were associated with good death (p < 0.05)--an exception being whether the physician said the cancer was curable/fatal. With adjustments, perceptions of provider knowledge/expertise was the only clinical factor that remained associated with good death. CONCLUSIONS: Enhanced provider training/communication, referrals to hospice and greater attention to symptom management may facilitate improved quality of dying. Additionally, the cultural relevance of the concept of a "good death" warrants further research.

Clinical applicability of proposed algorithm for identifying individuals at risk for hereditary hematologic malignancies.

Multiple genes have been identified to cause hereditary predispositions to hematologic malignancies, and characterized by an increased risk to develop myelodysplastic syndromes (MDS), acute myeloid leukemia (AML), and/or aplastic anemia (AA). Referral algorithms for patients who may be at higher risk have been proposed, with limited data regarding applicability. Our study aimed to evaluate referral criteria on a population of MDS/AML/AA patients. Demographic information and medical history were obtained from 608 patients referred over a 9-month period. Median age at diagnosis was 67 years (56-73), 387 (64%) were male, and the majority of individuals (54.9%) had AML. Overall, 406 individuals (66.8%) had insufficient documentation to determine whether certain criteria were met. Two hundred and two (33.2%) individuals met at least one criteria for genetic counseling referral; however, only nine (4.5%) were referred. Increased documentation of personal and family history is necessary to better assess and validate the applicability of these criteria.

Validation of the Quality of Dying-Hospice Scale.

CONTEXT: Measuring the quality of dying (QOD) experience is important for hospice providers. However, few instruments exist that assess one's QOD; and those that do have not been well validated in hospice. OBJECTIVES: This study tested the properties of the QOD-Hospice Scale (QOD-Hospice) to provide preliminary validation data on internal consistency, inter-rater reliability, convergent validity, and factorability in a hospice setting. Additionally, results of the factor analysis were used to create a brief version of the measure. METHODS: Bereaved informal caregivers who had provided care for a hospice patient were recruited from a large nonprofit hospice. Participants completed post-death surveys, which included the QOD-Hospice and other study measures. Convergent validity was tested by exploring hypothesized associations with related instruments measuring negative emotional states (Depression Anxiety Stress Scale-21), emotional grief (Texas Revised Inventory of Grief-2), social support (Lubben Social Network Scale-6), and a single-item measure of satisfaction with hospice care. RESULTS: A total of 70 caregivers participated in the survey (40 primary and 30 secondary caregivers), most of whom were female (67%) and white (81%). The QOD-Hospice produced an alpha of 0.86, an intraclass correlation of 0.49 between caregivers of the same decedent, and was correlated with all measures testing convergent validity (P<0.05; in the hypothesized direction) and most, but not all, subscales. An exploratory factor analysis elicited two factors, Preparation (seven items) and Security (six items), which were combined to create a 13-item version of the scale, the QOD-Hospice-Short Form. CONCLUSION: Although further testing of the QOD-Hospice measures is needed, preliminary evidence suggests that the instruments are reliable and valid for use in hospice.