Attitudes Towards End-of-Life Decisions and the Subjective Concepts of Consciousness: An Empirical Analysis

Background: People have fought for their civil rights, primarily the right to live in dignity. At present, the development of technology in medicine and healthcare led to an apparent paradox: many people are fighting for the right to die. This study was aimed at testing whether different moral principles are associated with different attitudes towards end-of-life decisions for patients with a severe brain damage. Methodology: We focused on the ethical decisions about withdrawing life-sustaining treatments in patients with severe brain damage. 202 undergraduate students at the University of Padova were given one description drawn from four profiles describing different pathological states: the permanent vegetative state, the minimally conscious state, the locked-in syndrome, and the terminal illness. Participants were asked to evaluate how dead or how alive the patient was, and how appropriate it was to satisfy the patient's desire. Principal Findings: We found that the moral principles in which people believe affect not only people's judgments concerning the appropriateness of the withdrawal of life support, but also the perception of the death status of patients with severe brain injury. In particular, we found that the supporters of the Free Choice (FC) principle perceived the death status of the patients with different pathologies differently: the more people believe in the FC, the more they perceived patients as dead in pathologies where conscious awareness is severely impaired. By contrast, participants who agree with the Sanctity of Life (SL) principle did not show differences across pathologies. Conclusions: These results may shed light on the complex aspects of moral consensus for supporting or rejecting end-of-life decisions

United States Acculturation and Cancer Patients' End-of-Life Care

Background: Culture shapes how people understand illness and death, but few studies examine whether acculturation influences patients' end-of-life treatment preferences and medical care. Methods and Findings: In this multi-site, prospective, longitudinal cohort study of terminally-ill cancer patients and their caregivers (n = 171 dyads), trained interviewers administered the United States Acculturation Scale (USAS). The USAS is a 19-item scale developed to assess the degree of "Americanization" in first generation or non-US born caregivers of terminally-ill cancer patients. We evaluated the internal consistency, concurrent, criterion, and content validity of the USAS. We also examined whether caregivers' USAS scores predicted patients' communication, treatment preferences, and end-of-life medical care in multivariable models that corrected for significant confounding influences (e.g. education, country of origin, English proficiency). The USAS measure was internally consistent (Cronbach α = 0.98); and significantly associated with US birthplace (r = 0.66, P<0.0001). USAS scores were predictive of patients' preferences for prognostic information (AOR = 1.31, 95% CI:1.00-1.72), but not comfort asking physicians' questions about care (AOR 1.23, 95% CI:0.87-1.73). They predicted patients' preferences for feeding tubes (AOR = 0.68, 95% CI:0.49-0.99) and wish to avoid dying in an intensive care unit (AOR = 1.36, 95% CI:1.05-1.76). Scores indicating greater acculturation were also associated with increased odds of patient participation in clinical trials (AOR = 2.20, 95% CI:1.28-3.78), compared with lower USAS scores, and greater odds of patients receiving chemotherapy (AOR = 1.59, 95% CI:1.20-2.12). Conclusion: The USAS is a reliable and valid measure of "Americanization" associated with advanced cancer patients' end-of-life preferences and care. USAS scores indicating greater caregiver acculturation were associated with increased odds of patient participation in cancer treatment (chemotherapy, clinical trials) compared with lower scores. Future studies should examine the effects of acculturation on end-of-life care to identify patient and provider factors that explain these effects and targets for future interventions to improve care (e.g., by designing more culturally-competent health education materials). © 2013 Wright et al

GPs’ Interactional Styles in Consultations with Dutch and Ethnic Minority Patients

The aim of this study was to examine interactional styles of general practitioners (GPs) in consultations with Dutch patients as compared to ethnic minority patients, from the perspective of level of mutual understanding between patient and GP. Data of 103 transcripts of video-registered medical interviews were analyzed to assess GPs’ communication styles in terms of involvement, detachment, shared decision-making and patient-centeredness. Surveys were used to collect data on patients’ characteristics and mutual understanding. Results show that overall, GPs communicate less adequately with ethnic minority patients than with Dutch patients; they involve them less in decision-making and check their understanding of what has been discussed less often. Intercultural consultations are thus markedly distinguishable from intracultural consultations by a lack of adequate communicative behavior by GPs. As every patient has a moral and legal right to make informed decisions, it is concluded that GPs should check more often whether their ethnic minority patients have understood what has been said during the medical consultation

Dying on the Streets: Homeless Persons’ Concerns and Desires about End of Life Care

BACKGROUND: There is little understanding about the experiences and preferences at the end of life (EOL) for people from unique cultural and socioeconomic backgrounds. Homeless individuals are extreme examples of these overlooked populations; they have the greatest risk of death, encounter barriers to health care, and lack the resources and relationships assumed necessary for appropriate EOL care. Exploring their desires and concerns will provide insight for the care of this vulnerable and disenfranchised population, as well as others who are underserved. OBJECTIVE: Explore the concerns and desires for EOL care among homeless persons. DESIGN: Qualitative study utilizing focus groups. PARTICIPANTS: Fifty-three homeless persons recruited from agencies providing homeless services. MEASUREMENTS: In-depth interviews, which were audiotaped and transcribed. RESULTS: We present 3 domains encompassing 11 themes arising from our investigation, some of which are previously unreported. Homeless persons worried about dying and EOL care; had frequent encounters with death; voiced many unique fears, such as dying anonymously and undiscovered; favored EOL documentation, such as advance directives; and demonstrated ambivalence towards contacting family. They also spoke of barriers to EOL care and shared interventions to improve dying among the very poor and estranged. CONCLUSIONS: Homeless persons have significant personal experience and feelings about death, dying, and EOL care, much of which is different from those previously described in the EOL literature about other populations. These findings have implications not only for homeless persons, but for others who are poor and disenfranchised

Lower Use of Hospice by Cancer Patients who Live in Minority Versus White Areas

BACKGROUND: Although hospice care can alleviate suffering at the end of life for patients with cancer, it remains underutilized, particularly by African Americans and Hispanics. OBJECTIVE: To examine whether the racial composition of the census tract where an individual resides is associated with hospice use. DESIGN: Retrospective analysis of the Surveillance, Epidemiology, and End Results–Medicare file for individuals dying from breast, colorectal, lung, or prostate cancer (n = 70,669). MEASUREMENTS: Hospice use during the 12 months before death. RESULTS: Hospice was most commonly used by individuals who lived in areas with fewer African-American and Hispanic residents (47%), and was least commonly used by individuals who lived in areas with a high percentage of African-American and Hispanic residents (35%). Hispanics (odds ratio 0.51, 95% confidence interval 0.29–0.91) and African Americans (0.56, 0.44–0.71) were less likely to use hospice if they lived in a census tract with a high percentage of both African Americans and Hispanics than if they lived in a low minority tract. African Americans and whites were less likely to receive hospice care if they lived in a census tract with a high percentage of Hispanics than if they lived in a low minority area. CONCLUSIONS: Increasing hospice use may require interventions to improve the delivery of hospice care in minority communities

Ageing and Long-Term Care Planning Perceptions of Hispanics in the USA: Evidence from a Case Study in New London, Connecticut

This paper explores the ageing attitudes and long-term care planning behavior of adult Hispanics in New London, Connecticut, a town with 30 thousand inhabitants that is rapidly ageing. We conducted six focus groups and had 37 participants share their ageing perceptions and long-term care needs. Our main findings suggest that informal care arrangements are vulnerable and unsustainable especially since women have historically and disproportionately provided most family eldercare even at their own personal and financial expense. Though male participants expected their female relatives to care for them when they age and need personal assistance, female participants did not necessarily expect the same from their relatives including their daughters. Also, both formal and government long-term care systems lack cultural competence and can be prohibitively costly. Therefore, Hispanics plan for ageing within their circles of family care and their resilience in a context of cultural exclusion and socio-economic disadvantage epitomizes strong intergenerational values. These support networks may help explain why may outlive whites (the Hispanic paradox ) who, on average, have higher wealth and education levels. Long-term care planning is a complex process that cannot be relayed to families only. Adequate training for family members from other relatives, and from private and government entities to appropriately convey this type of planning is vital to ensure that Hispanic families understand their options