Attitudes toward end-of-life decision making in South Texas

Advance care planning has the potential to create positive outcomes in the realm of end-of-life health care. The completion of advance directives and living wills are vital in equipping patients with autonomy and ensuring that their end-of-life wishes are respected. However, there remains a lack of knowledge and low completion rates of advance directives despite their possible improvements and ramifications on health care at the end of life. This study seeks to determine the knowledge of and attitudes towards end-of-life decision-making in South Texas. The study is designed as a cross-sectional, exploratory survey using a descriptive survey instrument to query 71 subjects in South Texas. The setting for the study includes three distinct groups, two in San Antonio, Texas and one in Brownsville, Texas. Unique differences in demographics between the three groups, such as variability in age, ethnicity, language and religious affiliation allowed for preliminary associations to be concluded in describing the results of the survey instrument. Ultimately, this study describes the attitudes and perceptions of advance care planning in South Texas and reveals the need for further education and awareness of the topic, perhaps indicating the need for a public health initiative in this regard.^

Comparison of clinical and economic outcomes between high-intensity care and hospice care for the end-of-life melanoma patients

The intensity of care for patients at the end-of-life is increasing in recent years. Publications have focused on intensity of care for many cancers, but none on melanoma patients. Substantial gaps exist in knowledge about intensive care and its alternative, hospice care, among the advanced melanoma patients at the end of life. End-of-life care may be used in quite different patterns and induce both intended and unintended clinical and economic consequences. We used the Surveillance, Epidemiology, and End Results (SEER)-Medicare linked databases to identify patients aged 65 years or older with metastatic melanoma who died between 2000 and 2007. We evaluated trends and associations between sociodemographic and health services characteristics and the use of hospice care, chemotherapy, surgery, and radiation therapy and costs. Survival, end-of-life costs, and incremental cost-effectiveness ratio were evaluated using propensity score methods. Costs were analyzed from the perspective of Medicare in 2009 dollars. In the first journal Article we found increasing use of surgery for patients with metastatic melanoma from 13% in 2000 to 30% in 2007 (P=0.03 for trend), no significant fluctuation in use of chemotherapy (P=0.43) or radiation therapy (P=0.46). Older patients were less likely to receive radiation therapy or chemotherapy. The use of hospice care increased from 61% in 2000 to 79% in 2007 (P =0.07 for trend). Enrollment in short-term (1-3 days) hospice care use increased, while long-term hospice care (≥ 4 days) remained stable. Patients living in the SEER Northeast and South regions were less likely to undergo surgery. Patients enrolled in long-term hospice care used significantly less chemotherapy, surgery and radiation therapy. In the second journal article, of 611 patients identified for this study, 358 (59%) received no hospice care after their diagnosis, 168 (27%) received 1 to 3 days of hospice care, and 85 (14%) received 4 or more days of hospice care. The median survival time was 181 days for patients with no hospice care, 196 days for patients enrolled in hospice for 1 to 3 days, and 300 days for patients enrolled for 4 or more days (log-rank test, P < 0.001). The estimated hazard ratios (HR) between 4 or more days hospice use and survival were similar within the original cohort Cox proportional hazard model (HR, 0.62; 95% CI, 0.49-0.78, P < 0.0001) and the propensity score-matched model (HR, 0.61; 95% CI, 0.47-0.78, P = 0.0001). Patients with ≥ 4 days of hospice care incurred lower end-of-life costs than the other two groups ($14,298 versus $19,380 for the 1- to 3-days hospice care, and $24,351 for patients with no hospice care; p < 0.0001). In conclusion, Surgery and hospice care use increased over the years of this study while the use of chemotherapy and radiation therapy remained consistent for patients diagnosed with metastatic melanoma. Patients diagnosed with advanced melanoma who enrolled in ≥ 4 days of hospice care experienced longer survival than those who had 1-3 days of hospice or no hospice care, and this longer overall survival was accompanied by lower end-of-life costs.^

Intensive care unit utilization among patients with cancer at the end of life

Over the last 2 decades, survival rates in critically ill cancer patients have improved. Despite the increase in survival, the intensive care unit (ICU) continues to be a location where end-of-life care takes place. More than 20% of deaths in the United States occur after admission to an ICU, and as baby boomers reach the seventh and eighth decades of their lives, the volume of patients in the ICU is predicted to rise. The aim of this study was to evaluate intensive care unit utilization among patients with cancer who were at the end of life. End of life was defined using decedent and high-risk cohort study designs. The decedent study evaluated characteristics and ICU utilization during the terminal hospital stay among patients who died at The University of Texas MD Anderson Cancer Center during 2003-2007. The high-risk cohort study evaluated characteristics and ICU utilization during the index hospital stay among patients admitted to MD Anderson during 2003-2007 with a high risk of in-hospital mortality. Factors associated with higher ICU utilization in the decedent study included non-local residence, hematologic and non-metastatic solid tumor malignancies, malignancy diagnosed within 2 months, and elective admission to surgical or pediatric services. Having a palliative care consultation on admission was associated with dying in the hospital without ICU services. In the cohort of patients with high risk of in-hospital mortality, patients who went to the ICU were more likely to be younger, male, with newly diagnosed non-metastatic solid tumor or hematologic malignancy, and admitted from the emergency center to one of the surgical services. A palliative care consultation on admission was associated with a decreased likelihood of having an ICU stay. There were no differences in ethnicity, marital status, comorbidities, or insurance status between patients who did and did not utilize ICU services. Inpatient mortality probability models developed for the general population are inadequate in predicting in-hospital mortality for patients with cancer. The following characteristics that differed between the decedent study and high-risk cohort study can be considered in future research to predict risk of in-hospital mortality for patients with cancer: ethnicity, type and stage of malignancy, time since diagnosis, and having advance directives. Identifying those at risk can precipitate discussions in advance to ensure care remains appropriate and in accordance with the wishes of the patient and family.^

End -of -life planning and decision -making: Implications for adults with mental retardation

This research focused on the topic of end-of-life planning and decision-making for adults affected by mental retardation. Adults with mental retardation have unique challenges in this regard, including difficulty communicating their wishes without assistance and diminished decision-making skills. The primary research objective was to identify factors that can affect opportunities for adults with mental retardation in community-based services settings (and their advocates) to be involved in planning and deciding about their own end-of-life experience. ^ A descriptive qualitative inquiry was designed to explore issues related to death and dying, and the notion of end-of-life planning, from the perspective of adults with mental retardation who receive publicly-funded community services ("clients") and family members of individuals who receive such services. Study participants were recruited from a single mental retardation service provider in a large urban setting (the "Agency"). Sixteen clients and 14 families of Agency clients took part. Client data collection was accomplished through face-to-face interviews, focus group meetings, and record reviews; family members were involved in a face-to-face interview only. ^ An initial coding scheme was developed based upon literature and policy reviews, and themes related to the research questions. Analysis involved extracting data from transcripts and records and placing it into appropriate thematic categories, building support for each theme with the accumulated data. Coding themes were modified to accommodate new data when it challenged existing themes. ^ Findings suggest that adults with mental retardation do have the requisite knowledge, interest, and ability to participate in decisions about their end-of-life experience and handling of affairs. Siblings are overwhelmingly the chosen future surrogates and they (or their children) will likely be the end-of-life advocates for their brothers and sisters affected by mental retardation. Findings further point to a need for increased awareness, accurate information, and improved communication about end-of-life issues, both in general and particular to adults affected by mental retardation. Also suggested by the findings is a need to focus on creating accommodations and adaptations that can best uncover a person's authentic views on life and death and related end-of-life preferences. Practical implications and suggestions for further research are also discussed. ^

Health-related quality of life and survival in liver transplant candidates.

Health-related quality of life (HRQOL) is an important measure of the effects of chronic liver disease in affected patients that helps guide interventions to improve well-being. However, the relationship between HRQOL and survival in liver transplant candidates remains unclear. We examined whether the Physical Component Summary (PCS) and Mental Component Summary (MCS) scores from the Short Form 36 (SF-36) Health Survey were associated with survival in liver transplant candidates. We administered the SF-36 questionnaire (version 2.0) to patients in the Pulmonary Vascular Complications of Liver Disease study, a multicenter prospective cohort of patients evaluated for liver transplantation in 7 academic centers in the United States between 2003 and 2006. Cox proportional hazards models were used with death as the primary outcome and adjustment for liver transplantation as a time-varying covariate. The mean age of the 252 participants was 54 +/- 10 years, 64% were male, and 94% were white. During the 422 person years of follow-up, 147 patients (58%) were listed, 75 patients (30%) underwent transplantation, 49 patients (19%) died, and 3 patients were lost to follow-up. Lower baseline PCS scores were associated with an increased mortality rate despite adjustments for age, gender, Model for End-Stage Liver Disease score, and liver transplantation (P for the trend = 0.0001). The MCS score was not associated with mortality (P for the trend = 0.53). In conclusion, PCS significantly predicts survival in liver transplant candidates, and interventions directed toward improving the physical status may be helpful in improving outcomes in liver transplant candidates.

A quality of life subscale for terminally ill cancer patients

A subscale was developed to assess the quality of life of cancer patients with a life expectancy of six months or less. Phase I of this study identified the major concerns of 74 terminally ill cancer patients (19 with breast cancer, 19 with lung cancer, 18 with colorectal cancer, 9 with renal cell cancer, 9 with prostate cancer), 39 family caregivers, and 20 health care professionals. Patients interviewed were being treated at the University of Texas M. D. Anderson Cancer Center or at the Hospice at the Texas Medical Center in Houston. In Phase II, 120 patients (30 with breast cancer, 30 with lung cancer, 30 with colorectal cancer, 15 with prostate cancer, and 15 with renal cell cancer) rated the importance of these concerns for quality of life. Items retained for the subscale were rated as "extremely important" or "very important" by at least 60% of the sample and were reported as being applicable by at least two-thirds of the sample. The 61 concerns that were identified were formatted as a questionnaire for Phase III. In Phase III, 356 patients (89 with breast cancer, 88 with lung cancer, 88 with colorectal cancer, 44 with prostate cancer, and 47 with renal cell cancer) were interviewed to determine the subscale's reliability and sensitivity to change in clinical status. Both factor analysis and item response theory supported the inclusion of the same 35 items for the subscale. Internal consistency reliability was moderate to high for the subscale's domains: spiritual (0.87), existential (0.76), medical care (0.68), symptoms (0.67), social/family (0.66), and emotional (0.61). Test-retest correlation coefficients also were high for the domains: social/family (0.86), emotional (0.83), medical care (0.83), spiritual (0.75), existential (0.75), and symptoms (0.81).^ In addition, concurrent validity was supported by the high correlation between the subscale's symptom domain and symptom items from the European Organization for Research and Treatment of Cancer (EORTC) scale (r = 0.74). Patients' functional status was assessed with the Eastern Cooperative Oncology Group (ECOG) Performance status rating. When ECOG categories were compared to subscale domains, patients who scored lower in functional status had lower scores in the spiritual, existential, social/family, and emotional domains. Patients who scored lower in physical well-being had higher scores in the symptom domain. Patient scores in the medical care domain were similar for each ECOG category. The results of this study support the subscale's use in assessing quality of life and the outcomes of palliative treatment for cancer patients in their last six months of life. ^