Cara L. Wallace

Hospice Eligibility and Election: Does Policy Prepare Us to Meet the Need?

A 7-point policy model is used to examine policy on hospice eligibility and election in the United States. Despite the growth of hospice, many eligible patients continue to lack access due to difficulties experienced by providers in discerning 6-month prognoses among chronically ill patients, the inability of patients to elect hospice alongside curative care, and limited reimbursement for hospice providers. Though the landscape of dying has evolved, with more deaths occurring later in life from chronic illness, Medicare hospice eligibility requirements have historically remained the same. Utilization would increase if hospice agencies were able to provide fewer restrictions by including ongoing treatments such as transfusions, intravenous nutrition, or palliative radiation. Hospices would be more likely to enroll critically ill patients who require some ongoing curative measures if Medicare reimbursement rates were higher, and patients would be more likely to seek hospice earlier if Medicare election policies were altered to allow concurrent care. Participation would also be increased by extending hospice eligibility past the traditional prognosis of 6 months. Though expansion in public spending of hospice care has been met with some opposition, current research suggests that potential savings due to decreased costs in acute care is promising.

Examining hospice enrollment through a novel lens: Decision time.

OBJECTIVE No prior studies on hospice utilization have captured information about the amount of time between when one first learns of hospice as a potential option for care and when he/she actually enrolls. Little is in fact known about this decision-making process. The present study examines hospice enrollment by exploring relationships between hospice decision time and known barriers to care. METHOD This was an exploratory cross-sectional study. Pearsons r was employed to identify bivariate relationships between barriers to care and decision time for hospice care. Independent-sample t tests and ANOVA were utilized to consider differences in decision time across key variables. RESULTS Some 90 hospice patients, or their primary decision maker, participated in the study from a not-for-profit hospice located in the southern United States. Decision time was correlated with referral source, use of disease-directed treatment, functional status (on the Palliative Performance Scale [PPS]), age, diagnosis, income, race, and spirituality-suggesting that decision time is a pertinent variable when examining hospice utilization. Differences in decision time were found across diagnosis, race, income, and referral source. SIGNIFICANCE OF RESULTS This study provides implications for policy and practice, particularly for clinicians faced with initial conversations about hospice care. Differences in decision time highlight ongoing needs related to overcoming healthcare disparities, the important role of including families in initial conversations, and the potential need for varied approaches to talking about hospice care based upon diagnosis. Results also highlight the need for policies supportive of concurrent care, where hospice can be accessed alongside curative care.

The Impact of Personal and Professional Loss on Advance Care Planning and Effective Care Delivery for Healthcare Social Workers

Personal experiences can influence the practice of social work. However, the connection between past experiences with death and social workers’ practice has been underexplored. As such, this study surveyed social workers (N = 74) about their personal and professional experiences of loss, personal advance care planning, and professional practices. Results demonstrated that social workers that experienced prior loss were more likely to complete an advance directive and communicate their end-of-life wishes. Additionally, those who had experienced personal and professional loss showed greater effectiveness on measures of patient- and family-centered communication and care delivery. Findings suggest positive outcomes for encouraging social workers to connect their personal and professional experiences surrounding death and dying to effectively serve in their professional capacity.

What Did Latino Family Caregivers Expect and Learn From Education Intervention “Caregivers Like Me”?

Objective: US Latinos historically have underutilized end-of-life (EOL) resources. This study reports the views of family caregivers before and after education intervention Caregivers Like Me geared to improve knowledge and attitudes regarding EOL resources among Latino caregivers. Methods: This is a qualitative substudy within a multicentered cross-sectional study design. Educational intervention was offered to family caregivers of Latino elders from 3 different communities, using an audiovisual presentation, including a case-based video telenovela and pre–posttest questionnaires with open-ended questions. This study pertains to the qualitative results for the open-ended questions before and after education intervention. Results: Participants (N = 145) were mostly females (79%) with a mean age of 56 ± 15 years and reported (92%) active learning from intervention. The pretest open-ended question on expected learning identified 2 themes, care for the sick and self-care. It included 5 subthemes and the most common one was how to help the sick. The posttest question on actual learning identified the same 2 themes and 4 subthemes that were similar but different from the pretest. Accepting help and knowledge of services available were the most common. Conclusion: The education intervention Caregivers Like Me was able to improve attitudes toward EOL care because participants who wanted to help their loved ones realized that they need to accept professional help and were made aware of the services available.

Connecting Personal Experiences of Loss and Professional Practices in Advance Care Planning and End-of-Life Care: A Survey of Providers

Background: Although practitioners overwhelmingly agree on the importance of advance care planning (ACP) and preparing for the end of life (EOL), the process is fraught with barriers. Objective: The goal of this research was to explore potential connections between providers’ own personal experiences and current professional practices in ACP and EOL care. Design: A cross-sectional survey design, gathering voluntary, anonymous responses from participants between August and December 2016. The survey sought information from providers in 3 distinct areas: (1) personal experiences of loss, (2) personal ACP, and (3) professional practices related to ACP and EOL care. Setting/Participants: One hundred and ninety health-care professionals (primarily physicians, nurses, and social workers) participated in the survey across a greater, Metropolitan area in the Midwest. Measurements: Questions for professional practices were subscales from the End-of-Life Professional Caregiver Survey: Patient- and Family-Centered Communication (PFCC) and Effective Care Delivery (ECD). Questions developed by the research team were evaluated by judges chosen for clinical and/or research expertise. Results: Numerous connections were found between professionals’ histories of loss, personal ACP, and professional practices. For example, both clinicians with personal experience caring for someone who is dying and clinicians who had completed their own ACP scored higher in both PFCC and ECD and were more likely to refer patients to hospice and palliative care. Conclusions: Results support educational interventions involving opportunities for reflection and completion and communication about ACP. Additionally, educational opportunities for students in health care should focus on incorporating both ACP and greater exposure to hospice and palliative care.

Ethics at the End of Life: A Teaching Tool.

ABSTRACT Social workers rarely receive education and training in the areas of grief, bereavement, and death and dying, which may lead to difficulties in compassionately and ethically addressing concerns in end-of-life or grief-related contexts. This article presents actual and potential outcomes from three challenging end-of-life case studies using Mattison’s ethical decision-making model as a framework. The case studies were drawn from student interviews with experienced master’s-level social workers. This pedagogical article helps to promote self-reflection and consideration of ethical issues in grief and death-related situations as well as supplement death education and ethics curricula to include end-of-life content.

Overcoming barriers in care for the dying: Theoretical analysis of an innovative program model

ABSTRACT This article explores barriers to end-of-life (EOL) care (including development of a death denying culture, ongoing perceptions about EOL care, poor communication, delayed access, and benefit restrictions) through the theoretical lens of symbolic interactionism (SI), and applies general systems theory (GST) to a promising practice model appropriate for addressing these barriers. The Compassionate Care program is a practice model designed to bridge gaps in care for the dying and is one example of a program offering concurrent care, a recent focus of evaluation though the Affordable Care Act. Concurrent care involves offering curative care alongside palliative or hospice care. Additionally, the program offers comprehensive case management and online resources to enrollees in a national health plan (Spettell et al., 2009).SI and GST are compatible and interrelated theories that provide a relevant picture of barriers to end-of-life care and a practice model that might evoke change among multiple levels of systems. These theories promote insight into current challenges in EOL care, as well as point to areas of needed research and interventions to address them. The article concludes with implications for policy and practice, and discusses the important role of social work in impacting change within EOL care.

Exhaust All Measures: Ethical Issues in Pediatric End-of-Life Care

ABSTRACT 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.

Caring for Kathy: Where to Draw the Line.

I was young when I began my career as a hospice social worker. I was one month shy of receiving my Masters in Social Work and fairly green in the world of working with the dying. I often say the le...