Factors Influencing Do-Not-Resuscitate Status in Children During Last Month of Life: Single Institution Experience.

BACKGROUND: It is currently expected that about 20% of children with cancer will ultimately die. Writing advanced life directives sufficiently long before the actual death of a child ensues allows both parents and medical staff to develop optimal treatment plans in the best interests of the child. AIM OF THE STUDY: The aim of the study was to evaluate factors that may influence the process of decision-making regarding Do-Not-Resuscitate (DNR) status. METHODS: Retrospective single institution study. RESULTS: Totally, 79 patients died between September 01, 2011 and August 31, 2017. Median age of the children was 10.5 years (range, 1 to 24 y). Forty-five were males. There were 37 Muslims, 27 Jews, 9 Druze, and 6 Christians. Twenty-one patients had sarcomas, 20 had CNS tumors, 10 had neuroblastoma, 17 had leukemias/lymphomas, 11 had carcinomas, and other rare tumors as well as nonmalignant diseases. No statistically significant association between all evaluated factors and DNR order status was found. CONCLUSIONS: It is possible that, other than demographic, clinical-associated, or therapy-associated factors play an important role in the process of decision-making regarding DNR. We feel that sincere communication between parents, their child (when appropriate) and medical and psychosocial staff may have a more crucial role when such decisions have to be made.

Action research study on advance care planning for residents and their families in the long-term care facility.

BACKGROUND: Research in Taiwan has indicated that advance care planning is rarely undertaken in long-term care facilities. The purpose of this study was to develop an advance care planning interview guideline and care model to facilitate the process of advance care planning for residents and their families in long-term care facilities. METHODS: This study follows an action research design. Cycles of planning, action, observation, and reflection were planned and modified based on the results of interviews with residents and their families as well as meetings with staff. To establish the interview guideline and care model through this action research study, residents and their families were interviewed separately. The researcher subsequently held meetings with staff members to evaluate the results and identify problems during each advance care planning process. This information was synthesised and used to modify the care model for implementation with the next resident-family pair. This process was performed a total of ten times. RESULTS: This study included residents (N = 10), their families (N = 20), and medical staff (N = 4) at a long-term care facility. The interviews and meetings were audio recorded, transcribed, and subjected to a simple thematic analysis together with the field notes and reflection logs. Four themes emerged from the data related to: opening the conversation with the interview guidelines about the life story of residents; continuing life stories to the quality of remaining years of the residents; gradually changing the topic to the end-of-life care issues; and concluding the conversation by explaining the content of advance directives and hospice care. CONCLUSIONS: The advance care planning care model was implemented following logical thinking from a Chinese perspective. This consisted of opening, developing, changing, and concluding through the views of Confucianism, Buddhism, and Taoism. The research findings indicate that the model successfully facilitated the process of advance care planning for residents and their families.

Advance Directive Utilization Is Associated with Less Aggressive End-of-Life Care in Patients Undergoing Allogeneic Hematopoietic Cell Transplantation.

Allogeneic hematopoietic cell transplantation (HCT) is associated with significant morbidity and mortality, making advance care planning (ACP) and management especially important in this patient population. A paucity of data exists on the utilization of ACP among allogeneic HCT recipients and the relationship between ACP and intensity of healthcare utilization in these patients. We performed a retrospective review of patients receiving allogeneic HCT at our institution from 2008 to 2015 who had subsequently died after HCT. Documentation and timing of advance directive (AD) completion were abstracted from the electronic medical record. Outcomes of interest included use of intensive care unit (ICU) level of care at any time point after HCT, within 30 days of death, and within 14 days of death; use of mechanical ventilation at any time after HCT; and location of death. Univariate logistic regression was performed to explore associations between AD completion and each outcome. Of the 1031 patients who received allogeneic HCT during the study period, 422 decedents (41%) were included in the analysis. Forty-four percent had AD documentation prior to death. Most patients (69%) indicated that if terminally ill, they did not wish to be subjected to life-prolonging treatment attempts. Race/ethnicity was significantly associated with AD documentation, with non-Hispanic white patients documenting ADs more frequently (51%) compared with Hispanic (22%) or Asian patients (35%; P = .0007). Patients with ADs were less likely to use the ICU during the transplant course (41% for patients with ADs versus 52% of patients without ADs; P = .03) and also were less likely to receive mechanical ventilation at any point after transplantation (21% versus 37%, P < .001). AD documentation was also associated with decreased ICU use at the end of life; relative to patients without ADs, patients with ADs were more likely to die at home or in hospital as opposed to in the ICU (odds ratio, .44; 95% confidence interval, .27 to .72). ACP remains underused in allogeneic HCT. Adoption of a systematic practice to standardize AD documentation as part of allogeneic HCT planning has the potential to significantly reduce ICU use and mechanical ventilation while improving quality of care at end of life in HCT recipients.

Impact of end-of-life discussions on the reduction of Latino/non-Latino disparities in do-not-resuscitate order completion.

BACKGROUND: Compared with non-Latino, white patients with advanced cancer, Latino patients with advanced cancer are less likely to sign do-not-resuscitate (DNR) orders, which is a form of advance care planning associated with better quality of life at the end of life (EOL). Latinos' completion of DNR orders may be more sensitive to clinical discussions regarding EOL care. The current study examined differences between Latino and white terminally ill patients with cancer with regard to the association between EOL discussions and DNR order completion. METHODS: A total of 117 participants with advanced cancer (61 of whom were Latino and 56 of whom were non-Latino white individuals) were recruited between 2002 and 2008 from Parkland Hospital (a public hospital in Dallas, Texas) as part of the Coping with Cancer study, which is a large, multiinstitutional, prospective cohort study of patients with advanced cancer that is designed to examine social and psychological influences on EOL care. In structured interviews, patients reported if they had EOL discussions with their physicians, and if they completed DNR orders. RESULTS: The association between EOL discussions and DNR order completion was significantly greater in Latino compared with white patients, adjusting for potential confounds (interaction adjusted odds ratio, 6.64; P = .041). Latino patients who had an EOL discussion were >10 times more likely (adjusted odds ratio, 10.91; P = .001) to complete a DNR order than those who had not, and were found to be equally as likely to complete a DNR order as white patients. CONCLUSIONS: Differences in the impact of EOL discussions on DNR order completion may explain Latino/non-Latino ethnic disparities in DNR order completion in EOL care, and point to a means to eliminate those disparities. Cancer 2016;122:1749-56. © 2016 American Cancer Society.

Dying well: How equal is end of life care among gynecologic oncology patients?

OBJECTIVE: To identify disparities in utilization of end of life (EoL) resources by gynecologic oncology (GO) patients. METHODS: This retrospective analysis of the medical records of GO patients treated 1/2007-12/2011 and deceased 1/2012-8/2014 evaluated patient demographics, disease characteristics, and utilization of EoL resources. Chi-square, Fisher's exact test, Mann Whitney and Kruskal-Wallis tests were used for statistical analysis. RESULTS: Of 189 patients analyzed, 113 (60%) were white, 38 (20%) Hispanic, 31 (16%) black, and seven (4%) Asian. Ninety-five (48%) had ovarian cancer, 51 (26%) uterine, 47 (23%) cervical, seven (3%) vulvar/vaginal. In the last 30days of life (DoL), 18 (10%) had multiple hospital admissions, 10 (5%) admitted to the Intensive Care Unit (ICU), 30 (16%) multiple Emergency Room (ER) visits, 45 (24%) received aggressive medical care and eight (4%) received chemotherapy in the final 14 DoL. Furthermore, 54 (29%) had no Supportive Care referral and 29 (15%) no hospice referral. Only 46 (24%) had a Medical Power of Attorney (PoA) or Living Will (LW) on file. Non-white race was associated with increased odds of dying without hospice (OR 3.07; 95%CI [1.27, 2.46], p=0.013). However, non-white patients who enrolled in hospice did so earlier than white patients (42 v. 27days before death, p=0.054). Non-white patients were also significantly less likely to have PoA/LW documentation (24% v. 76%, p=0.009) even if enrolled in hospice (12% v. 31%, p=0.007). CONCLUSIONS: Significant racial disparities in hospice enrollment and PoA/LW documentation were seen in GO patients. This warrants further study to identify barriers to use of EoL resources.

The Influence of Sociodemographic and Psychosocial Factors on Advance Care Planning.

This study investigated sociodemographic and psychosocial factors that enhance or impede the completion of advance care planning, analyzing data from the Health and Retirement Study. The analytic subsample included the panel participants who died between 2006 and 2010 and who had answered the psychosocial and lifestyle questionnaire when they were alive. Multinomial logistic regression was executed to answer the research question (N = 1,056). The study found that persons who were older, who were women, who identified themselves as White, and who had higher levels of income and education were more likely to be motivated to complete advance care planning. Having greater sense of control was found to weaken the adverse relationship between being African American and the completion of advance directives. Having cancer, suffering from the illnesses for longer periods of time, and having experience of nursing home institutionalization also predicted the completion of advance care planning. Implications include incorporating a culturally tailored approach for racial/ethnic minorities and using advance directives that are clear and easily understood. In addition, future research needs to include a larger minority population and examine the extent to which variations between racial/ethnic groups exist in relation to advance care planning.

Do Advance Directives Direct?

Resolution of long-standing debates about the role and impact of advance directives - living wills and powers of attorney for health care - has been hampered by a dearth of appropriate data, in particular data that compare the process and outcomes of end-of-life decision making on behalf of patients with and without advance directives. Drawing on a large ethnographic study of patients in two intensive care units in a large urban teaching hospital, this article compares aspects of the medical decision-making process and outcomes by advance-directive status. Controlling for demographic characteristics and severity of illness, the study finds few significant differences between patients without advance directives and those who claim to have them. Surprisingly, these few differences hold only for those whose directives are in their hospital chart. There are no significant differences between those with no directive and those claiming to have a copy at home or elsewhere. The article considers the implications if directives seemingly must be in hand to show even modest effects. Do advance directives direct? The intensive care unit data provide far more support for the growing body of literature that casts doubt on their impact than studies that promote the use of them.

Achieving goal-concordant care: Formal and informal advance care planning for White, Black, and Hispanic older adults.

INTRODUCTION: Advance care planning (ACP) aims to ensure that patients receive goal-concordant care (GCC), which is especially important for racially or ethnically minoritized populations at greater risk of poor end-of-life outcomes. However, few studies have evaluated the impact of advance directives (i.e., formal ACP) or goals-of-care conversations (i.e., informal ACP) on such care. This study aimed to examine the relationship between each of formal and informal ACP and goal-concordant end-of-life care among older Americans and to determine whether their impact differed between individuals identified as White, Black, or Hispanic. METHODS: We conducted a retrospective cohort study using 2012-2018 data from the biennial Health and Retirement Study. We examined the relationships of interest using two, separate multivariable logistic regression models. Model 1 regressed a proxy report of GCC on formal and informal ACP and sociodemographic and health-related covariates. Model 2 added interaction terms between race/ethnicity and the two types of ACP. RESULTS: Our sample included 2048 older adults. There were differences in the proportions of White, Black, and Hispanic decedents who received GCC (83.1%, 75.3%, and 71.3%, respectively, p < 0.001) and in the use of each type of ACP by racial/ethnic group. In model 1, informal compared with no informal ACP was associated with higher odds of GCC (adjusted odds ratio = 1.38 [95% confidence interval, 1.05-1.82]). In model 2, Black decedents who had formal ACP were more likely to receive GCC than those who did not, but there were no statistically significant differences between decedents of different racial/ethnic groups who had no ACP, informal ACP only, or both types of ACP. CONCLUSIONS: Our results build on previous work by indicating the importance of incorporating goals-of-care conversations into routine healthcare for older adults and encouraging ACP usage among racially and ethnically minoritized populations who use ACP tools at lower rates.

Ethnicity, race, and advance directives in an inpatient palliative care consultation service.

OBJECTIVE: Although race and ethnic background are known to be important factors in the completion of advance directives, there is a dearth of literature specifically investigating the effect of race and ethnicity on advance directive completion rate after palliative care consultation (PCC). METHOD: A chart review of all patients seen by the PCC service in an academic hospital over a 9-month period was performed. Data were compiled using gender, race, ethnicity, religion, and primary diagnosis. For this study, advance directives were defined as: "Do Not Resuscitate" (DNR) and/or "Do Not Intubate" (DNI). RESULTS: Of the 400 medical records reviewed, 57% of patients were female and 71.3% documented their religion as Christian. The most common documented diagnosis was cancer (39.5%). Forty-seven percent reported their race as white. White patients completed more advance directives than did nonwhite patients both before (25.67% vs. 12.68%) and after (59.36% vs. 40.84%) PCC. There was a significantly higher proportion of whites who signed an advance directive after a PCC than of nonwhites (p = 0.021); of the 139 whites who did not have an advance directive at admission, 63 signed an advance directive after a PCC compared with 186/60 nonwhites (45% vs. 32%, respectively, p = 0.021). Further analysis revealed that African Americans differed from whites in the likelihood of advance directive execution rates pre-PCC, but not post-PCC. SIGNIFICANCE OF RESULTS: This study demonstrates the impact of a PCC on the completion of advance directives, on both whites and nonwhites. The PCC Intervention significantly reduced differences between whites and African Americans in completing advance directives, which have been consistently documented in the end-of-life literature.

Traditional expectations versus US realities: first- and second-generation Asian Indian perspectives on end-of-life care.

BACKGROUND: Although end-of-life care preferences vary across racial/ethnic groups, little is known about how cultural values affect end-of-life care preferences among South Asian immigrants and their offspring in the US. OBJECTIVE: To examine the perspectives of first- and second-generation South Asians living in the US regarding end-of-life care. DESIGN: Focus group study. Discussions explored participant preferences and experiences with family members facing the end of life. PARTICIPANTS: Twelve first-generation and 11 second-generation self-identified Asian Indians living in the mid-Atlantic region. APPROACH: Content analysis of focus group transcripts. RESULTS: First-generation participants ranged in age from 41 to 76 years and were evenly split by gender. Second-generation participants ranged in age from 23 to 36 years and included seven women and four men. All participants were highly educated, and two thirds were either studying or working in a health care field. All but two subjects were Hindu. Several themes emerged that highlighted cultural differences and challenges for this population in the context of end-of-life care: attitudes toward death and suffering; family duty; and preferences for information disclosure and decision making. Participants described cultural challenges due to the evolution of traditional roles, lack of explicit discussion between patients and family members about preferences and care expectations, and a tension between wanting to meet traditional expectations and the challenges in doing so given US social realities. CONCLUSIONS: Traditional cultural values, such as duty to family, greatly influenced end-of-life care preferences and retained importance across generations. Clinicians caring for Asian Indian patients at the end of life may be better able to assess care preferences after exploring the complex interplay between traditional expectations and specific social realities for each patient. Particular attention should be given to attitudes toward death and suffering, family duty, and preferences for information disclosure and decision making.

Advance directives among Korean American older adults: knowledge, attitudes, and behavior.

The study objective was to explore knowledge, attitudes, and behavior about advance directives and how cultural values influence these beliefs. Three focus groups with 23 Korean American older adults were conducted. Advance directives were seen as helpful for ensuring that preferences for unwanted end-of-life treatment are honored and for relieving the decision-making burden on family members. However, some viewed completing advance directives as contrary to focusing on living. Culturally competent education about advance directives for Korean American older adults is necessary to help them make informed decisions about end-of-life care and informing family and health care providers of these preferences.

The influence of culture on end-of-life decision making.

In their research, scholars have documented racial and ethnic differences in end-of-life care preferences, which have translated into cultural barriers. However, few studies have explained the racial differences. In the present study, focus groups with semi-structured follow-up interviews were utilized to elicit explanations for variance in decision making in a sample of Black and White community-dwelling residents. Participants identified specific cultural beliefs, values, and communication patterns that can be used to promote cultural competency among practitioners who provide care at end of life.

Factors influencing preferences of Korean people toward advance directives.

Although Korean society has begun to seek a way of utilizing advance directives, there is not much known about the factors influencing the average Korean person's preference toward advance directives. The purpose of this study was to examine factors, in addition to demographic variables, influencing preferences regarding advance directives. These include: to what extent people's awareness of advance directives, preferences of extending their life at the end of life, experience of illness and medical care, and family functioning independently influence the preferences toward advance directives. The participants were 382 community-dwelling Korean people. The data analysis was performed using hierarchical multiple logistic regression analysis. The findings showed that a majority of Korean people had a positive preference on advance directives and the factors influencing their preferences for advance directives were the preferences against the use of life-sustaining treatment at the end of life, a good self-rated heath status, and an unsatisfactory family functioning.

The cultural context of patient's autonomy and doctor's duty: passive euthanasia and advance directives in Germany and Israel.

The moral discourse surrounding end-of-life (EoL) decisions is highly complex, and a comparison of Germany and Israel can highlight the impact of cultural factors. The comparison shows interesting differences in how patient's autonomy and doctor's duties are morally and legally related to each other with respect to the withholding and withdrawing of medical treatment in EoL situations. Taking the statements of two national expert ethics committees on EoL in Israel and Germany (and their legal outcome) as an example of this discourse, we describe the similarity of their recommendations and then focus on the differences, including the balancing of ethical principles, what is identified as a problem, what social role professionals play, and the influence of history and religion. The comparison seems to show that Israel is more restrictive in relation to Germany, in contrast with previous bioethical studies in the context of the moral and legal discourse regarding the beginning of life, in which Germany was characterized as far more restrictive. We reflect on the ambivalence of the cultural reasons for this difference and its expression in various dissenting views on passive euthanasia and advance directives, and conclude with a comment on the difficulty in classifying either stance as more or less restrictive.

Advance directives in the clinical ethics context: an African perspective.

In this paper I examine issues associated with advance directives and the impact these issues have on people's lives based on their value systems. I ague from an African perspective, where I defend the view that competent persons ought to be allowed to decide on medical interventions they want (or do not want) should they become incompetent. My arguments are derived from the idea of African concepts of death, dying and belief in ancestral realm. The principle of collective-autonomous decision is used to explain how decisions on advance directives to reject a medical intervention can be implemented in the African context.

Interventions for End of Life Decision Making for Patients with Limited English Proficiency.

Patients with limited English proficiency (LEP) experience disparities in end-of-life decision making and advance care planning. Our objective was to conduct a systematic review to assess the literature about interventions addressing these issues. Our search strategy was built around end-of-life (EOL), LEP, ACP, and goals of care. The databases included Ovid MEDLINE(R), and Epub Ahead of Print, In-Process & Other Non-Indexed Citations and Daily from 1946 to November 9, 2018, Ovid EMBASE. Eight studies from the US and Australia were included (seven studies in Spanish and one study in Greek and Italian). Interventions used trained personnel, video images, web-based programs, and written materials. Interventions were associated with increased advance directive completion and decreased preferences for some life-prolonging treatments. Interventions were deemed to be feasible and acceptable. Few interventions exist to improve end-of-life care for patients with LEP. Data are limited regarding intervention effectiveness.

End-of-life communication: ethnic differences between Korean American and non-Hispanic White older adults.

OBJECTIVE: This study examined ethnic differences in end-of-life communication between Korean American and non-Hispanic White older adults using the Health Belief Model as a conceptual framework. METHOD: A cross-sectional design was employed to survey 217 community-dwelling older adults (112 Korean Americans and 105 Non-Hispanic Whites). RESULTS: Half of the participants had never held end-of-life discussions with significant others. Non-Hispanic Whites were more likely to engage in end-of-life communication than Korean Americans, but the ethnicity effect was not evident in a multivariate analysis. Only participants' knowledge, perceived barriers, perceived severity, and experience of illness significantly predicted the likelihood of the end-of-life communication. Higher knowledge, stronger beliefs about the perceived severity and barriers, and greater experience of illness were related to having end-of-life communication. DISCUSSION: Knowledge and health beliefs play an important role in end-of-life communication which differs by ethnicity. Culturally competent health care practitioners need to consider ethnic variation in advance care planning.

Relationship Between Preferences for Advance Directive Treatments and Decisional Conflicts Among Low-Income, Home-Based Cancer Management Recipients in Korea.

Introduction: Data-based research has rarely addressed advance directives (ADs) in community-dwelling Korean cancer survivors. The purpose of this study was to examine the relationship between AD treatment choices and decisional conflicts among low-income, home-based cancer management recipients. Method: This study uses a cross-sectional, correlational design. The cancer survivors completed the questionnaires (Korean-Advance Directive model and Decisional Conflict Scale). Results: Among the 103 participants (average age 67.92 years), 56.3% had solid cancer. Hospice care was the most desired (68.9%), followed by hemodialysis (18.4%), cardiopulmonary resuscitation/ventilation support (15.5% for each), and chemotherapy (12.6%). Patients who were older, unmarried, unemployed, or underweight/obese; lived alone; or had lower education experienced greater decisional conflicts. In the multivariate analyses, no hospice preference was associated with greater decisional conflicts (t = -2.63, p = .01). Discussion: Early integration of AD discussion with the nurse-led, home-based service for this vulnerable population could serve as a liaison for quality and continuity of cancer survivorship care.

Dealing With Death Taboo: Discussion of Do-Not-Resuscitate Directives With Chinese Patients With Noncancer Life-Limiting Illnesses.

BACKGROUND: Noncancer patients with life-limiting diseases often receive more intensive level of care in their final days of life, with more cardiopulmonary resuscitation performed and less do-not-resuscitate (DNR) orders in place. Nevertheless, death is still often a taboo across Chinese culture, and ethnic disparities could negatively affect DNR directives completion rates. OBJECTIVES: We aim to explore whether Chinese noncancer patients are willing to sign their own DNR directives in a palliative specialist clinic, under a multidisciplinary team approach. DESIGN: Retrospective chart review of all noncancer patients with life-limiting diseases referred to palliative specialist clinic at a tertiary hospital in Hong Kong over a 4-year period. RESULTS: Over the study period, a total of 566 noncancer patients were seen, 119 of them completed their own DNR directives. Patients had a mean age of 74.9. Top 3 diagnoses were chronic renal failure (37%), congestive heart failure (16%), and motor neuron disease (11%). Forty-two percent of patients signed their DNR directives at first clinic attendance. Most Chinese patients (76.5%) invited family caregivers at DNR decision-making, especially for female gender (84.4% vs 69.1%; P = .047) and older (age >75) age group (86.2% vs 66.7%; P = .012). Of the 40 deceased patients, median time from signed directives to death was 5 months. Vast majority (95%) had their DNR directives being honored. CONCLUSION: Health-care workers should be sensitive toward the cultural influence during advance care planning. Role of family for ethnic Chinese remains crucial and professionals should respect this family oriented decision-making.