American Journal of Hospice and Palliative Medicine®

Research has shown that African Americans (AAs) are less likely to complete advance directives and enroll in hospice. We examined barriers to use of these end-of-life (EOL) care options by conducting semi-structured interviews with hospice and palliative medicine providers and leaders of a national health care organization. Barriers identified included: lack of knowledge about prognosis, desires for aggressive treatment, family members resistance to accepting hospice, and lack of insurance. Providers believed that acceptance of EOL care options among AAs could be improved by increasing cultural sensitivity though education and training initiatives, and increasing staff diversity. Respondents did not have programs currently in place to increase awareness of EOL care options for underrepresented minorities, but felt that there was a need to develop these types of programs. These data can be used in future research endeavors to create interventions designed to increase awareness of EOL care options for AAs and other underrepresented minorities.

The purpose of this study was to investigate how HIV-positive patients and infectious disease health care providers think about death, dying, and end-of-life care (EOLC) planning. We conducted separate in-depth qualitative interviews with 47 patients and 11 providers. Interview data were transcribed and analyzed using a secondary comparative method. Patients and providers demonstrated profound differences in their perspectives on patient empowerment and attributions of control related to disease progression, imminence of death, and EOLC decision making. Notably, patients described fears related to life-extending interventions that generally went unaddressed within the clinical context. We argue for the routinization of EOLC discussions and suggest novel research approaches to improve patient empowerment and medical engagement.

This study was undertaken to examine two aspects of care at the end of life. First, we wanted to see whether the cost savings demonstrated repeatedly in the US Medicare hospice population would also be observed in a commercial population in Tennessee. They were. The second primary interest we had was whether there were certain medical services that seemed to presage death. We found four categories of services that profoundly increase in number as the end of life is approached: primary care, hospital-based specialist, non-hospital based specialist, and oncologist services. It is hoped that these findings could lead to a simple predictive model based on readily available claims data to help identify candidates for Hospice Care earlier.

The present study aimed to investigate difficulties in caring for a patient with cancer at the end of life at home and to examine relationships between difficulties with care and complicated grief. The 45 bereaved family members completed the Family Difficulty Scale (FDS) and the Inventory of Complicated Grief (ICG). The FDS score for “Patient’s pain and condition” was the highest, followed by “Caregivers did not want home care” and “No support from others.” There was a significant relationship between FDS and ICG scores. These results suggest that the condition of the patient, the view of the caregiver on home care, and the absence of other support are important factors contributing to difficulties of family caregivers, and that these difficulties may lead to complicated grief.

Incorporation of tablet computers (TCs) into patient assessment may facilitate safe and secure data collection. We evaluated the usefulness and acceptability of a TC as an electronic self-report symptom assessment instrument. Research Electronic Data Capture Web-based application supported data capture. Information was collected and disseminated in real time and a structured format. Completed questionnaires were printed and given to the physician before the patient visit. Most participants completed the survey without assistance. Completion rate was 100%. The median global quality of life was high for all. More than half reported pain. Based on Edmonton Symptom Assessment System, the top 3 most common symptoms were tiredness, anxiety, and decreased well-being. Patient and physician acceptability for these quick and useful TC-based surveys was excellent.

The nature of emergency end-of-life calls is changing as people live longer and die from chronic illnesses. This study explored prehospital providers’ perceptions of (1) end-of-life 911 calls, (2) the signs and symptoms of dying, and (3) medical orders for life sustaining treatment (MOLST). The exploratory–descriptive pilot study was survey based and cross-sectional. Calls to nursing homes occur most often, (47.8% every shift). The MOLST was seen infrequently (57.9% rarely never). The most frequent signs and symptoms of dying were diagnosis (76%), hospice involvement (82%), apnea (75%), mottling (55%), and shortness of breath (48%). The MOLST identifies wishes about intubation (74%), resuscitation (74%), life-sustaining treatment (72%), and cardiopulmonary resuscitation (70%). Synergy exists between the fields of prehospital, hospice, and palliative medicine which offers potential for improved education and care.

This study investigated the rate of hospice use by Latinos and African Americans relative to their prevalence in the general population between 2004 and 2010 as a follow-up to a previous investigation. Archival data (N = 2625) were collected on patients' race/ethnicity, gender, marital status, length of stay in hospice, and reason for discharge. In contrast to previous findings, African Americans were more likely to utilize hospice services, but Latinos were less likely to use hospice services compared to the other groups. There were no differences among the racial/ethnic groups in terms of length of stay or disposition at termination. Strengthening efforts to reach a larger racial/ethnic representation in hospice programs may increase the rate of hospice use by some racial/ethnic groups but not others.

End-of-life (EOL) decision making is based on the values and wishes of terminally ill patients. However, little is known on the extent to which cultural factors affect personal attitudes toward life-sustaining treatments (LSTs) such as cardiopulmonary resuscitation (CPR) in China. This study evaluated the cultural and ethical considerations during EOL decisions and assessed the factors that affect pursuing LSTs in China. We used a case–control study design and compared their baseline characteristics with the provided EOL care and treatments. The CPR treatment among patients with cancer at EOL was affected by Chinese family traditions and Western influences. Our results reflect the need to improve EOL care and treatment in China.

Association between palliative case management (PCM) and the utilization of major health services during the last 30 days of life in Medicaid patients with cancer was assessed using retrospective cohort analysis. There were 132 PCM enrollees in the intervention group and 54 non-PCM enrollees in the comparison group. The intervention group had lower inpatient admission rate than that of the comparison group (56.8% vs 74.1%), lower ICU admission rate (12.9% vs 24.1%), longer mean hospice days (45.8 vs 31.1 days), and lower percentage of persons with death in hospital (24.2% vs 35.9%). No statistically significant differences were found in mean intensive care unit days (8.7 vs 9.7 days), treat-and-release emergency department visit rate (22.0% vs 16.7%), or hospice election rate (65.9% vs 70.4%). Palliative case management may reduce hospitalization and increase hospice use in patients nearing death.

Dying of hematological oncology patients often take place in respective hematology ward or intensive care unit rather than hospice. With the increased attention to quality palliative care for hematology patients, concerns regarding their level of medical care at end-of-life need to be addressed. We conducted a retrospective review of consecutive hematological oncology patients who succumbed in a palliative unit between July 2012 and August 2013. The primary outcome measure was their level of medical care received, including administration of antibiotics, total parenteral nutrition, blood sampling, GCSF injection and blood products transfusion, during their last seven days of life. During the last seven days of life, 85.7 % of patients had blood sampling and 23.8% of patients received G-CSF injection. Total parenteral nutrition was administered in 14.3% of patients. One-third of patients received transfusion of packed cells and nearly half of them received transfusion of platelet concentrates. Almost 90% of patients received antibiotics during their last week of life. Collaboration between hematology and palliative care has resulted in successful transition of hematologic cancer patients into hospice unit in their terminal phase of illness. However, their level of medical care, even approaching last seven days of life, remained intensive. Proper allocation of medical resources and future research regarding optimal end-of-life care for hematology patients are warranted.

The concept of a “good death” has been intensely discussed over the past decades. The objective of this study is to investigate this concept among staff and patients’ relatives in 29 Bulgarian hospices and 5 palliative care units. Self-administered questionnaires were completed by 190 members of staff and 216 patients’ relatives. Death without pain and suffering and death in one’s sleep were leading concepts in both the groups. Staff preferred death in the presence of relatives, while relatives preferred fast and sudden death. Although we were able to define the common concept of a good death as painless and sudden death in one’s sleep, death is unique phenomenon and good palliative care should be based on communication with patients about their idea of a good death.

This study examined the relationship between race and advance care planning, hospitalization, and death among nursing home residents receiving hospice care. Secondary data analysis using the 2007 Minimum Data Set (MDS) was used to identify documentation of these activities for White, Black, Hispanic, and Asian residents with linear regression models fitted to each dependent variable. Across different types of advance directives, compared to White nursing home residents, Black, Hispanic, and Asian residents who received hospice services were significantly less likely overall to have documented advance directives. All racial groups were also more likely to experience hospitalization while on hospice, regardless of whether they had a documented “do not hospitalize” order. As nursing homes become more diverse, recognizing differences in hospice use and end-of-life planning will continue to increase in importance.

The search for an underlying cause of altered mental status not uncommonly becomes more challenging in the hospice and palliative care setting. Due to multiple coexisting conditions that affect mental status and shifting goals of care, discerning that single cause in this venue can become frustrating and even nonbeneficial at times. We present a case of nonconvulsive status epilepticus (NCSE), which multiple reports have shown to be a rarely contemplated cause of impaired consciousness. A concise review of NCSE follows, with emphasis on conditions that present similarly, precipitating factors, diagnostic and therapeutic considerations, and prognostic implications. Nonconvulsive status epilepticus is a reversible cause of altered consciousness, particularly when recognized promptly. In a palliative care unit, treatment should ultimately be guided by the patient’s goals of care.