Conceptualizing the Value of Pediatric Concurrent Hospice Care.

Given that pediatric concurrent hospice care has been available for more than a decade, it is appropriate to seek an understanding of the value of this care delivery approach. Value is the cost associated with achieving beneficial health outcomes. In pursuit of this goal, the current literature on pediatric concurrent hospice care was synthesized and used to develop a model to explain its value. Because of its relevance, the Value Assessment Framework was used to conceptualize the value of pediatric concurrent hospice care. This framework gauges the value of a health care service through 2 components: long-term effect and short-term affordability. The framework considers comparative clinical effectiveness, cost-effectiveness, other benefits or disadvantages, contextual considerations, and potential budget impact. Evidence from the literature suggested that the value of concurrent care depended on clinical outcomes evaluated, costs examined, medical services used, care coordinated, context considered, and budget impacted. The literature demonstrated that pediatric concurrent hospice care does offer significant value for children and their families. The conceptual model highlighted the need for a comprehensive approach to assessing value. The model is a useful framework for future research examining the value of concurrent hospice care.

A National Study of Healthcare Service Patterns at the End of Life Among Children With Cardiac Disease.

BACKGROUND: Heart diseases are one of the leading causes of health-related deaths among children. Concurrent hospice care offers hospice and nonhospice healthcare services simultaneously, but the use of these services by children with cardiac disease has been rarely investigated. OBJECTIVE: The aims of this study were to identify patterns of nonhospice healthcare services used in concurrent hospice care and describe the profile of children with cardiac disease in these clusters. METHODS: This study was a retrospective cohort analysis of Medicaid claims data collected between 2011 and 2013 from 1635 pediatric cardiac patients. The analysis included descriptive statistics and latent class analysis. RESULTS: Children in the sample used more than 314 000 nonhospice healthcare services. The most common services were inpatient hospital procedures, durable medical equipment, and home health. Latent class analysis clustered children into "moderate intensity" (60.0%) and "high intensity" classes (40.0%). Children in "moderate intensity" had dysrhythmias (31.7%), comorbidities (85.0%), mental/behavioral health conditions (55%), and technology dependence (71%). They commonly resided in urban areas (60.1%) in the Northeast (44.4%). The health profile of children in the "high intensity" class included dysrhythmias (39.4%), comorbidities (97.6%), mental/behavioral health conditions (71.5%), and technology dependence (85.8%). These children resided in rural communities (50.7%) in the South (53.1%). CONCLUSIONS: Two patterns of use of nonhospice healthcare services were identified in this study. This information may be used by nurses and other healthcare professionals working in concurrent hospice care to assess the healthcare service needs of children with cardiac conditions at the end of life.

Social Determinants of Comfort: A New Way of Conceptualizing Pediatric End-of-Life Care.

The social determinants of comfort describe structural conditions that influence whether, to what degree, and in what forms comfort measures are offered to and accepted by people living with serious illness and their families. The notion of social determinants of comfort builds on the well-accepted concept of social determinants of health. Although some guiding palliative care documents begin to address this intersection, deeper understanding and exploration are needed. The goals of this article are to (1) describe and articulate the impact of structural and ecological factors on the comfort children and families can attain near the end of life; (2) describe how to address these factors to support children and families in attaining comfort, and maybe even flourish, at end of life; and (3) provide an agenda for research that addresses how palliative care research can advance health equity and how a focus on equity can advance palliative care science. A variety of inequities reinforce social vulnerability and disadvantage throughout the life span and can have profound effects on children, particularly children with serious illness or at the end of life. Ethical care for these children requires recognition of the social determinants of comfort.

Patterns of Healthcare Services Among Children With Advanced Cancer in Concurrent Hospice Care.

BACKGROUND: Children with advanced cancer have access to comprehensive cancer care and hospice care if they enroll in concurrent hospice care. However, little is known about the patterns of nonhospice healthcare services used by these children. OBJECTIVE: The aim of this study was to examine the patterns of nonhospice healthcare services among children with cancer in concurrent hospice care. METHODS: This study was a retrospective cohort analysis of 2011-2013 Medicaid claims data from 862 pediatric cancer patients. Data were analyzed using descriptive statistics and latent class analysis (LCA). RESULTS: Children used 120 388 healthcare services, including inpatient and outpatient hospital services, laboratories and x-rays, durable medical equipment, medications, and others. These services clustered into 2 classes with moderate-intensity (57.49%) and high-intensity (42.50%) healthcare service use. Children in the high-intensity cluster were more likely to reside in the South with comorbidities, mental/behavioral health conditions, and technology dependence and were less likely to have solid tumors, compared with the moderate-intensity group. CONCLUSIONS: Nonhospice healthcare services clustered together in 2 distinct classes, providing critical insight into the complexity of the healthcare use among children with cancer in concurrent hospice care. IMPLICATIONS FOR PRACTICE: Understanding that pediatric patients in concurrent care may have different healthcare service patterns may assist oncology nurses caring for children with advanced cancer. These findings also have policy implications.

Patterns of Health Care Services During Pediatric Concurrent Hospice Care: A National Study.

BACKGROUND: Children at end of life have unique and complex care needs. Although there is increasing evidence about pediatric concurrent hospice care, the health care services received while in hospice have not received sufficient attention. OBJECTIVES: To examine the health care services, unique clusters of health care services, and characteristics of the children in the clusters. METHODS: Multiple data sources were used including national Medicaid claims data. Children under 21years in pediatric concurrent hospice care were included. Using Medicaid categories assigned to claims, health care services were distributed across 20 categories. Latent class analysis was used to identify clusters of health care services. Demographic profiles of the clusters were created. RESULTS: The 6,243 children in the study generated approximately 500,0000 non-hospice, health care service claims while enrolled in hospice care. We identified 3 unique classes of health care services use: low (61.1%), moderate (18.1%), and high (20.8%) intensity. The children in the 3 classes exhibited unique demographic profiles. CONCLUSIONS: Health care services cluster together in unique fashion with distinct patterns among children in concurrent hospice care. The findings suggest that concurrent hospice care is not a 1-size-fit all solution for children. Concurrent hospice care may be customized and require attention to care coordination to ensure high-quality care.

End-of-Life Healthcare Service Needs Among Children With Neurological Conditions: A Latent Class Analysis.

ABSTRACT: BACKGROUND: At the end of life, children with neurological conditions have complex healthcare needs that can be met by providing care of their life-limiting conditions concurrently with hospice care (ie, concurrent care). Given the limited literature on concurrent care for children with neurologic conditions, this investigation aimed to identify patterns of nonhospice, healthcare service needs and to assess characteristics of children within each group. METHODS: A nationally representative sample children with neurological conditions enrolled in concurrent hospice care was used. Latent class analysis and descriptive statistics were calculated to identify patterns of healthcare needs and characteristics of children within the groups. A subgroup analysis of infants was conducted. RESULTS: Among the 1601 children, the most common types of services were inpatient hospitals, durable medical equipment, and home health. Two classes of service needs were identified: moderate intensity (58%) and high intensity (42%). Children in the moderate-intensity group were predominantly between 1 and 5 years old, male, White, and non-Hispanic. The most common neurological condition was central nervous system degeneration. They also had significant comorbidities, mental/behavioral health conditions, and technology dependence. They commonly resided in urban areas in the South. Children in the high-intensity group had a wide range of neurological conditions and high acuity. The subgroup analysis of infants indicated a different neurological profile. CONCLUSIONS: Two distinct classes of nonhospice, healthcare service needs emerged among children with neurological conditions at the end of life. The groups had unique demographic profiles.

Financial Decision-Making Capacity and Patient-Centered Discharge.

An ethically sound discharge from the hospital can be impeded by a number of factors, including a lack of payor for a patient's care, a lack of appropriate discharge options, and a lack of authority to sign a patient into a long-term facility. In some cases, the primary barrier involves the patient's lack of financial decision-making capacity. When a patient's income comes primarily from government assistance, financial decision making is connected to both the individual's well-being and to fair allocation of resources. Taking away another person's financial independence is a substantial intrusion on autonomy and should not be considered lightly. However, poor management of funds can lead to homelessness, medical noncompliance, vulnerability to financial exploitation, and other threats to human flourishing. As with medical decision-making capacity, poor decisions alone do not invalidate an individual's right to self-determination. And as with medical decision-making capacity, such determinations should not be made ad hoc or be capricious, but should rely on sound assessment criteria. When there are justified concerns that a patient may be vulnerable due to limited financial decision-making capacity, an evaluation should be completed and a surrogate payee be sought, when appropriate.

Culturally Acceptable Advance Care Planning and Advance Directives for Persons Experiencing Homelessness.

Although the process of dying is a universal human experience, it often magnifies individuals' unique cultural differences. Persons experiencing homelessness (PEHs) have unique barriers, challenges, and wishes for end-of-life care. There is insufficient evidence about how to provide culturally congruent advance care planning (ACP) through advance directive (AD) completion for PEHs. This study addressed this knowledge gap, and its findings serve as the basis for developing additional strategies to promote a satisfying ACP experience for this population when they complete an AD. The purpose of this study was to discover if an AD form recreated for PEHs would positively affect their completion of the AD as well as their overall experience with ACP. Guided by the culture care theory and qualitative ethnonursing methodology, 38 individuals (30 PEHs and 8 student nurses) were interviewed. Data were analyzed using the 4 phases of ethnonursing analysis. The 3 themes abstracted were (1) "it needs to be done," (2) the presence or absence of trusted family support, and (3) ACP for PEHs is facilitated by an AD workshop. Nursing interventions based on study findings can be used to help promote a dignified, meaningful ACP experience for vulnerable populations.

Addiction, 12-Step Programs, and Evidentiary Standards for Ethically and Clinically Sound Treatment Recommendations: What Should Clinicians Do?

Addiction is a complex phenomenon characterized by a loss of control and compulsive, habitual behavior. Since there is no single, specific cause for addiction, there is no single, standard treatment for it. A variety of approaches are used, including counseling, psychotherapy, medications, and mutual help groups (MHG). The best known and most widely available approach to addiction is 12-step (TS) programs of recovery, a variety of MHG. These have been lauded as lifesaving by some and criticized by others. We argue that TS programs are an appropriate mode of help for those seeking to quit an addiction but should not be the only approach considered.

The moral courage of nursing students who complete advance directives with homeless persons.

BACKGROUND: Homeless persons in the United States have disproportionately high rates of illness, injury, and mortality and tend to believe that the quality of their end-of-life care will be poor. No studies were found as to whether nurses or nursing students require moral courage to help homeless persons or members of any other demographic complete advance directives. RESEARCH HYPOTHESIS: We hypothesized that baccalaureate nursing students require moral courage to help homeless persons complete advance directives. Moral courage was defined as a trait of a person or an action that overcomes fears or other challenges to achieve something of great moral worth. RESEARCH DESIGN: The hypothesis was investigated through a qualitative descriptive study. Aside from the pre-selection of a single variable to study (i.e. moral courage), our investigation was a naturalistic inquiry with narrative hues insofar as it attended to specific words and phrases in the data that were associated with that variable. PARTICIPANTS AND RESEARCH CONTEXT: A total of 15 baccalaureate nursing students at a public university in the United States responded to questionnaires that sought to elicit fears and other challenges that they both expected to experience and actually experienced while helping homeless persons complete advance directives at a local, non-profit service agency. ETHICAL CONSIDERATIONS: The study was approved by the Internal Review Board of the authors' university, and each participant signed an informed consent form, which stated that the study involved no reasonably foreseeable risks and that participation was voluntary. FINDINGS: Before meeting with homeless persons, participants reported that they expected to experience two fears and a challenge: fear of behaving in ways that a homeless person would deem inappropriate, fear of discussing a homeless person's dying and death, and the challenge of adequately conveying the advance directive's meaning and accurately recording a homeless person's end-of-life wishes. In contrast, after their meetings with homeless persons, relatively few participants reported having encountered those obstacles. So, while participants required moral courage to assist homeless persons with advance directives, they required greater moral courage as they anticipated their meetings than during those meetings. DISCUSSION: Our study breaks new ground at the intersection of nursing, moral courage, and advance directives. It might also have important implications for how to improve the training that US nursing students receive before they provide this service. CONCLUSION: Our results cannot be generalized, but portions of our approach are likely to be transferable to similar social contexts. For example, because homeless persons are misunderstood and marginalized throughout the United States, our design for training nursing students to provide this service is also likely to be useful across the United States. Internationally, however, it is not yet known whether our participants' fears and the challenge they faced are also experienced by those who assist homeless persons or members of other vulnerable populations in documenting healthcare wishes.

Undocumented and at the end of life.

Three of the most contentious issues in contemporary American society-allocation of medical resources, end of life care, and immigration-converge when undocumented immigrant patients are facing the terminal phase of chronic illness. The lack of consistent, pragmatic policy in each of these spheres leaves us with little guidance for how to advocate for undocumented patients at the end of life. Limited resources and growing need compound the problem. Care for patients in this unfortunate situation should be grounded in clinical and economic reality as well as respect for the dignity of the individual to avoid exacerbating inequalities.