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Advance Directives from a Social Work Perspective: Influence of Culture and Family DynamicsInfluence of Culture and Family Dynamics
Abstract
A review of the literature since the year 2000 erases all doubt about the increasing cultural, racial, ethnic, and religious diversity of the United States, which has ushered in demographic trends that lead to complex sociocultural care dynamics and the likelihood that our patients’ values may not be concordant with those of traditional Western-based medicine. Palliative social workers face the challenge of implementing and evaluating healthcare practices and approaches that effectively and respectfully meet the demands of diverse populations in need of serious illness care. Moreover, care for diverse patients and families with life-limiting illness is compromised when there is a lack of understanding about culturally bound treatment preferences and or distrust for the healthcare system. This chapter recommends cultural competence in advance care planning as a means for equipping social workers with the tools needed to engage individuals and family members in conversations early and increase the utilization of advance directives among diverse populations.
... CSWs support patients in understanding their options and in exploring how a potential intervention is related (or not) to their desired treatment goals. CSWs recognize the importance of cultural and spiritual beliefs and rituals and have a role in ensuring that these are known and respected throughout the shared decision making process (Bullock 2011). ...
... CSWs bring crucial skills in contextualizing patient needs and offering insight into factors that impact patient quality of life and health decision making. CSWs play a critical role in advocating for patients and reducing barriers to desired outcomes, particularly with disenfranchised and vulnerable populations (Bullock 2011). ...
As our population ages, providing person-centered, family-focused, culturally congruent, quality care becomes ever more important. Advance care planning (ACP) conversations seek to elicit a person’s values, beliefs and preferences and to identify who might be a surrogate decision-maker for a person if they are unable or unwilling to speak for themselves. These nuanced conversations provide the foundation for the delivery of personalized goal-concordant care. Yet, despite the many benefits associated with ACP, it remains underutilized. Clinical social workers are well positioned to take a leadership role in ACP. This paper highlights a range of ACP roles and resources for clinical social workers within healthcare and in the community.
... Race, ethnicity and sexual orientation have been associated with variations in end-of-life decisions and the completion of advance directives; for example, African Americans report the lowest completion rate for directives and whites the highest in the USA (Blackhall et al., 1999;Caralis et al., 1993;Kelly et al., 2009;Stein and Bonuck, 2001). Perhaps more than other members of the health care team, social workers are skilled in integrating cultural values and norms into patient and family care—often critical in addressing cultural barriers to advance care planning (NASW, 2007;Stein et al., 2009;Bullock, 2011). ...
Advance care planning is important to promoting and communicating ones preferences, values and interests when one lacks capacity to make health care decisions, including those towards the end of life. A comparison of advance care planning between the USA and the UK reveals similarities and differences in policy, implementation and the social work role. The USA has a longer history of advance care planning and one that is oriented towards the general public, regardless of health status. The UK is newer to advance care planning and focuses its attention on the patient population, especially people with life-limiting illnesses. Who is meant to initiate advance care planning also differs between the USA and UK. The USA and UK have different legal and informal documents related to advance care planning, with variations and inconsistencies within the USA and UK as well. As the key member of the hospice and palliative care team concerned with psychosocial care, social workers can assume vital roles, including patient and family education; promoting meaningful communication among patients, family members and health care providers; assisting people facing illness in documenting their preferences; and advocating for patients wishes. As strong advocates, communicators and counsellors, social workers can be leaders in encouraging and facilitating advance care planning.
To investigate the impact of advance care planning on end of life care in elderly patients.
Prospective randomised controlled trial.
Single centre study in a university hospital in Melbourne, Australia.
309 legally competent medical inpatients aged 80 or more and followed for six months or until death.
Participants were randomised to receive usual care or usual care plus facilitated advance care planning. Advance care planning aimed to assist patients to reflect on their goals, values, and beliefs; to consider future medical treatment preferences; to appoint a surrogate; and to document their wishes.
The primary outcome was whether a patient's end of life wishes were known and respected. Other outcomes included patient and family satisfaction with hospital stay and levels of stress, anxiety, and depression in relatives of patients who died.
154 of the 309 patients were randomised to advance care planning, 125 (81%) received advance care planning, and 108 (84%) expressed wishes or appointed a surrogate, or both. Of the 56 patients who died by six months, end of life wishes were much more likely to be known and followed in the intervention group (25/29, 86%) compared with the control group (8/27, 30%; P<0.001). In the intervention group, family members of patients who died had significantly less stress (intervention 5, control 15; P<0.001), anxiety (intervention 0, control 3; P=0.02), and depression (intervention 0, control 5; P=0.002) than those of the control patients. Patient and family satisfaction was higher in the intervention group.
Advance care planning improves end of life care and patient and family satisfaction and reduces stress, anxiety, and depression in surviving relatives. Trial registration Australian New Zealand clinical trials registry ACTRN12608000539336.
The intensive care unit (ICU) is a focal point for decision making in end-of-life care. Social workers are involved in providing this care for patients and families. Our goal was to examine the social worker component of an intervention to improve interdisciplinary palliative care in the ICU.
The study took place at a 350-bed hospital with 65 ICU beds. We surveyed family members and social workers caring for patients who died in the ICU or within 30 hours of transfer from ICU. Clustered regression was used to assess the effect of the intervention on three outcomes: (1) families' satisfaction with social work, (2) social workers' reported palliative and supportive activities, and (3) social workers' satisfaction with meeting family needs.
Of 590 eligible patients, 275 families completed surveys (response rate, 47%). Thirty-five social workers received 353 questionnaires concerning 353 unique patients and completed 283 (response rate, 80%). Social workers reported significant increase in the total number of activities for family members after the intervention. Some of the activities included addressing spiritual or religious needs, discussing disagreement among the family, and assuring family the patient would be kept comfortable. Neither social workers' satisfaction with meeting families' needs nor family ratings of social workers were higher after the intervention. Increased social worker experience and smaller social worker caseload were both associated with increased family satisfaction with social work.
The increase in social worker-reported activities supports the value of the interdisciplinary intervention, but we did not demonstrate improvements in other outcomes. Increased social-worker experience and decreased social worker caseload were independently associated with better family ratings of social workers suggesting future directions for interventions to improve care by social workers. Future studies will need more powerful interventions or more sensitive outcome measures to document improvements in family-assessed outcomes.
This volume was planned prior to the COVID-19 pandemic as the North Carolina Institute of Medicine (NCIOM) completed a yearlong task force on serious illness. Beyond the task force report, we wanted to dedicate a special edition of the NCMJ to serious illness issues. We commissioned authors who could discuss the challenges, the current practices, and the extensive personal and professional skills needed to navigate these complicated medical diagnoses that often end in death. Little did we know how timely this would be in light of the current pandemic, and we can only speculate on how the world will look as this is published. Our pre-COVID planning reflected personal experiences we all face with the common denominator of serious illness impacting and shaping our lives. As guest editors, we considered how this NCMJ edition would address personal concerns for you, our reader, as well as ourselves. A physician, a social worker, and a nurse, we each have our stories and we want to invite you to lean in and bring both your head and your heart to this reading. We start by relating two very personal experiences that shaped not only life following loss, but also career choices, clinical practices, and scholarship. As you focus on this journal's content, we hope you will also reflect on the people you care for, as well as the issues we all inevitably face.
Advance care planning (ACP) improves end-of-life care for patients and their caregivers. However, only one-third of adults have participated in ACP and rates are substantially lower among African Americans than among whites. Importantly, ACP improves many domains of care where there are racial disparities in outcomes, including receipt of goal-concordant care, hospice use, and provider communication. Yet, few studies have examined the effectiveness of ACP interventions among African Americans. The objectives of reducing disparities in the quality of palliative care for older African Americans through improved advance care planning (EQUAL ACP) are as follows: to compare the effectiveness of two interventions in (1) increasing ACP among African Americans and whites and (2) reducing racial disparities in both ACP and end-of-life care; and to examine whether racial concordance of the interventionist and patient is associated with ACP. EQUAL ACP is a longitudinal, multisite, cluster randomized trial and a qualitative study describing the ACP experience of participants. The study will include 800 adults ≥65 years of age (half African American and half white) from 10 primary care clinics in the South. Eligible patients have a serious illness (advanced cancer, heart failure, lung disease, etc.), disability in activities of daily living, or recent hospitalization. Patients are followed for one year and participate in either a patient-guided, self-management ACP approach, including a Five Wishes form or structured ACP with Respecting Choices First Steps. The primary outcome is formal or informal ACP-completion of advance directives, documented discussions with clinicians, and other written or verbal communication with surrogate decision makers about care preferences. Secondary outcomes assessed through after-death interviews with surrogates of patients who die during the study include receipt of goal-concordant care, health services use in the last year of life, and satisfaction with care. EQUAL ACP is the first large study to assess which strategies are most effective at both increasing rates of ACP and promoting equitable palliative care outcomes for seriously ill African Americans.
Introduction: Advance care planning (ACP) is a process in which patients, families, and providers discuss and plan for desired treatment goals. American Indian and Alaska Native people (AI/AN) have higher prevalence of many serious, life-limiting illnesses compared with the general population; yet AI/ANs use ACP considerably less than the overall population. Method: We conducted a qualitative study to culturally adapt an existing ACP intervention for AI/ANs in two primary care settings. Results: We found that it is important to incorporate patients’ cultural values and priorities into ACP, determine who the patient wants involved in ACP conversations, and consider the culturally and locally relevant barriers and facilitators when developing an ACP intervention with AI/AN communities. Discussion: At the core, ACP interventions should be clear and understandable across populations and tailored to facilitate culturally appropriate and meaningful patient–provider communication. Our results and methodology of culturally adapting an intervention may be applicable to other underrepresented populations.
Background:
Although the fragmentation of end-of-life care has been well documented, previous research has not examined racial and ethnic differences in transitions in care and hospice use at the end of life.
Design and Subjects:
Retrospective cohort study among 649,477 Medicare beneficiaries who died between July 2011 and December 2011.
Measurements:
Sankey diagrams and heatmaps to visualize the health care transitions across race/ethnic groups. Among hospice enrollees, we examined racial/ethnic differences in hospice use patterns, including length of hospice enrollment and disenrollment rate.
Results:
The mean number of care transitions within the last six months of life was 2.9 transitions (standard deviation [SD] = 2.7) for whites, 3.4 transitions (SD = 3.2) for African Americans, 2.8 transitions (SD = 3.0) for Hispanics, and 2.4 transitions (SD = 2.7) for Asian Americans. After adjusting for age and sex, having at least four transitions was significantly more common for African Americans (39.2%; 95% confidence interval [CI]: 38.8-39.6%) compared with whites (32.5%, 95% CI: 32.3-32.6%), and less common among Hispanics (31.2%, 95% CI: 30.4-32.0%), and Asian Americans (26.5%, 95% CI: 25.5-27.5%). Having no care transition was significantly more common for Asian Americans (33.0%, 95% CI: 32.0-34.1%) and Hispanics (28.8%, 95% CI: 28.0-29.6%), compared with African Americans (19.2%, 95% CI: 18.9-19.5%) and whites (18.9%, 95% CI: 18.8-19.0%). Among hospice users, whites, African Americans, and Hispanics had similar length of hospice enrollment, which was significantly longer than that of Asian Americans. Nonwhite patients were significantly more likely than white patients to experience hospice disenrollment.
Conclusions:
Racial/ethnic differences in patterns of end-of-life care are marked. Future studies to understand why such patterns exist are warranted.
End-of-life care has attracted increased attention in recent years due to increases in both the number and mean age of the world's population; however, the experiences of LGBT persons during end-of-life care remain understudied. Given the health disparities and barriers to care experienced throughout the life course of LGBT persons, the frequent involvement of legal spouses in end-of-life care, and the recency of marriage equality, it can be surmised that LGBT persons might experience significantly different barriers to their desired end-of-life care compared to their heterosexual and cisgender counterparts. This article aims to synthesize what is known about these barriers, particularly in the absence of legal marriage or protective legal documentation. Of two hundred and twelve articles reviewed, twenty-three were included for analysis. Common barriers that emerged were discriminatory laws (e.g., prohibitions against same-sex marriage) and policies, lack of decision-making capacity, lack of knowledge regarding patient wishes, lack of visitation rights, challenges from biological next of kin, and discrimination and psychological distress. Recommendations for future research are provided based on gaps that were identified. These include increased research on transgender persons and bisexual persons, and on providers of end-of-life care. In addition, the recommendations take into account that important legislative and policy changes occurred after the period in which the studies reviewed here were published. The impact of those changes cannot be reported in this study and should be determined by future studies. This synthesis provides the contextual understanding necessary for research and improvement in this vastly understudied area.
Background:
High-quality care for seriously ill patients aligns treatment with their goals and values. Failure to achieve "goal-concordant" care is a medical error that can harm patients and families. Because communication between clinicians and patients enables goal concordance and also affects the illness experience in its own right, healthcare systems should endeavor to measure communication and its outcomes as a quality assessment. Yet, little consensus exists on what should be measured and by which methods.
Objectives:
To propose measurement priorities for serious illness communication and its anticipated outcomes, including goal-concordant care.
Methods:
We completed a narrative review of the literature to identify links between serious illness communication, goal-concordant care, and other outcomes. We used this review to identify gaps and opportunities for quality measurement in serious illness communication.
Results:
Our conceptual model describes the relationship between communication, goal-concordant care, and other relevant outcomes. Implementation-ready measures to assess the quality of serious illness communication and care include (1) the timing and setting of serious illness communication, (2) patient experience of communication and care, and (3) caregiver bereavement surveys that include assessment of perceived goal concordance of care. Future measurement priorities include direct assessment of communication quality, prospective patient or family assessment of care concordance with goals, and assessment of the bereaved caregiver experience.
Conclusion:
Improving serious illness care necessitates ensuring that high-quality communication has occurred and measuring its impact. Measuring patient experience and receipt of goal-concordant care should be our highest priority. We have the tools to measure both.
The death of a child may have a profound impact on parents, family members, and health care providers who provided care for the child. Unique challenges are faced by parents of seriously ill children as they must serve as the legal authority for health care decisions of children under age 18, although the child's wishes must also be considered. Social workers must balance core social work values, bioethical values, and psychosocial issues presented by such situations. While studies have been conducted with physicians and nurses regarding ethical issues in pediatric end-of-life care settings, little is known about how social workers experience these conflicts. This article utilizes two vignettes to illustrate potential ethical issues in this setting and applies the National Association of Social Workers Standards for Palliative and End of Life Care (NASW, 2004 ) to explore options for their resolution. These vignettes provide descriptions of possible reactions in this setting and can be used as a basis for further exploration of ethics in pediatric end-of-life care from a social work perspective.
Background:
Despite evidence that enrollment with hospice services has the potential to reduce hospital readmission rates, previous research has not examined exactly how hospitals may promote the appropriate use of hospice and palliative care for their discharged patients. Therefore, we sought to explore the strategies used by hospitals to increase the use of hospice and palliative care for patients at risk of readmission.
Methods:
We conducted a secondary analysis of qualitative data from a study of hospitals that were participating in the State Action on Avoidable Readmissions (STAAR) initiative, a quality improvement collaborative. We used data attained from 46 in-depth interviews conducted during 10 hospital site visits using a standard discussion guide and protocol. We used a grounded theory approach using the constant comparative method to generate recurrent and unifying themes.
Results:
We found that a positive effect for hospitals participating in the STAAR initiative was enhanced engagement in efforts to promote greater use of hospice and palliative care as a possible method of reducing unplanned readmissions, the central goal of the STAAR initiative. Hospital staff described strategies to increase the use of hospice and palliative care that included (1) designing and implementing tracking systems to identify patients most at risk of being readmitted, (2) providing education about hospice and palliative care to family, internal and external clinical groups, and (3) establishing closer links to posthospital settings.
Conclusion:
National efforts to reduce rehospitalizations may result in improved integration of hospice and palliative care for patients who are at risk of readmission.
The costs of cancer care are expected to grow from $72 billion in 2004 to $173 billion by 2020.¹ Unfortunately, the fee-for-service Medicare reimbursement model provides financial incentives for administering chemotherapy even in the last weeks of life, another day in the intensive care unit (ICU), and recurrent hospitalizations and disincentivizes having conversations that educate patients diagnosed as having cancer and their families about their prognosis and treatment options and developing a care plan consistent with patients’ informed goals of care. These incentives are important, but do not wholly determine the quality of care that patients receive. However, a 2013 Institute of Medicine Report² concluded that our cancer care system is in crisis, stating that “cancer care is often not as patient-centered, accessible, coordinated, or evidence-based as it could be.”
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.
Abstract Racial and ethnic disparities in health care access and quality are well documented for some minority groups. However, compared to other areas of health care, such as disease prevention, early detection, and curative care, research in disparities in palliative care is limited. Given the rapidly growing population of minority older adults, many of whom will face advanced serious illness, the availability of high-quality palliative care that meets the varied needs of older adults of all races and ethnicities is a priority. This paper reviews existing data on racial and ethnic disparities in use of and quality of palliative care and outlines priorities for future research.
To describe how some Black Americans view advance directives. Current literature revealed that most prior studies used quantitative methods with force-choice questions and had few Black subjects.
Interviews were conducted with 17 Black Americans. Transcripts of the interviews were subjected to content analysis.
Three major categories of themes were identified: Threats to dignity, family relationships, and spirituality. Black Americans in this study did not desire unconditional end-of-life treatment.
This sample had a positive attitude toward the utility of advance directives. Legally generated directives were not seen as necessary.
The alternative ways that Black Americans may conduct advance directing should be recognized.
End-of-life care for people with cancer from ethnic minority groups: A systematic review.
Racism fatigue. Compassionate Leaders in Education Project
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Institutional racism contributes to COVID-19’s “double whammy” impact on the Black community. Health report from Dr. Anthony Fauci to CNN reporter
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Emotional intelligence, cultural competence and the experience of racism fatigue
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