Moving toward Medicare home health coverage for persons with Alzheimer's disease

Medicare home health care policy does not incorporate research evidence of effective palliative home care interventions for Alzheimer's disease and dementia patients and caregivers. This article examines the dissonance between the needs and burdens of Alzheimer's disease patients and caregivers, research results on medical and palliative care interventions, and medicalized public policy in the Medicare home health benefit. The article asserts existing research establishes a prima facie case exists for the federal government to fund a Medicare Palliative Home Care for Alzheimer's disease demonstration project. The article cites the success of the Medicare Hospice Demonstration project and Hospice Medicare Benefit in reducing costs and improving client quality of life as precedent and a model for Alzheimer's disease. Other research implications are identified.     

Moving Toward Medicare Home Health Coverage for Persons with Alzheimer's Disease

ABSTRACT

Medicare home health care policy does not incorporate research evidence of effective palliative home care interventions for Alzheimer's disease and dementia patients and caregivers. This article examines the dissonance between the needs and burdens of Alzheimer's disease patients and caregivers, research results on medical and palliative care interventions, and medicalized public policy in the Medicare home health benefit. The article asserts existing research establishes a prima facie case exists for the federal government to fund a Medicare Palliative Home Care for Alzheimer's disease demonstration project. The article cites the success of the Medicare Hospice Demonstration project and Hospice Medicare Benefit in reducing costs and improving client quality of life as precedent and a model for Alzheimer's disease. Other research implications are identified.     

A Cross-Sectional Examination of the Association Between Dyspnea and Distress as Experienced by Palliative Home Care Clients and Their Informal Caregivers

This study examined the association between dyspnea and distress as experienced by both palliative home care clients and their informal caregivers as a unit of care. Cross-sectional analysis was conducted using the interRAI Palliative Care Assessment database. Responses from 6,655 individual palliative home care clients across six regional jurisdictions in Ontario, Canada were included. This study found that clients experiencing dyspnea were more likely to show overall signs of distress; report one or more signs of self-reported distress; and be at risk for depression when compared to clients who do not experience dyspnea. Caregivers of clients experiencing dyspnea were more likely to exhibit distress than caregivers of clients not reporting dyspnea. When indicators of caregiver distress and client distress were combined, 53% of the caregiver-client units exhibited distress. Social work practitioners should include a focus on distress within the care unit as a priority when care planning to meet the needs of persons nearing the end of life. Members of the care team should consider available treatment and management options tailored to meet both the client and their informal caregiver’s needs.     

“Unexpected and Distressing”: Understanding and Improving the Experience of Transferring Palliative Care Inpatients to Residential Care

The survival of patients with advanced cancer, coupled with the increased presence of end-stage chronic illnesses in an aging population, is leading to a demand in palliative care. Due to the ongoing need for acute-pain and symptom control in hospice/palliative care units, few are able to offer long-stay admission for those whose symptoms have stabilized. When a patient no longer requires specialist palliative care services, transfer from an inpatient palliative care facility may then be necessary. A core component of the role of palliative-care social workers involves working with patients and their families/carers when the care pathway shifts and the option of residential aged care facility (RACF) needs to be considered. This research explored several issues, including the impact of this transition on the patient and their families and on the interdisciplinary health care team treating the patient. An investigation was undertaken to identify concerns and barriers regarding the transition from hospice care to RACF and opportunities were highlighted to improve clinical practice in this area. A tripartite approach was adopted conducting face-to-face interviews with patients, their families/carers, and health care professionals. Members of the interdisciplinary team were interviewed and social workers working in similar inpatient palliative-care facilities undertook telephone interviews to gauge their experiences. A thematic analysis discerned a number of themes highlighting the impact of this transition on key stakeholders and incorporated recommendations to improve or best manage this process. The research has highlighted the difficulties that patients/families encounter in this transition, as well as the emphases of protecting the integrity of the patient and family. This is achieved by holding open and ongoing dialogue, particularly through family meetings and working in collaboration with the patient, the family, and the team. Understanding the experience and impact of this transition on key stakeholders is helpful in building up a knowledge base and to ensure a more effective relationship occurs. This research incorporated the voices of terminally ill patients, families, and members of the health care team in order to understand their views and recommendations for best managing the transition from a hospice/inpatient palliative-care facility to a RACF. This enables their input to have some real impetus in clinical practice and service delivery.     

Poverty and Pediatric Palliative Care: What Can We Do?

It has been recognized that families of children with life-limiting health conditions struggle with significant financial demands, yet may not have awareness of resources available to them. Additionally, health care providers may not be aware of the socioeconomic needs of families they care for. This article describes a mixed-methods study examining the content validity and utility for health care providers of a poverty screening tool and companion resource guide for the pediatric palliative care population. The study found high relevance and validity of the tool. Significant barriers to implementing the screening tool in clinical practice were described by participants, including: concerns regarding time required, roles and responsibilities, and discomfort in asking about income. Implications for practice and suggestions for improving the tool are discussed. Screening and attention to the social determinants of health lie within the scope of practice of all health care providers. Social workers can play a leadership role in this work.     

Caregiver involvement in behavioural health services in the context of child welfare service referrals: a qualitative study

Human service agencies serve a growing number of adults with behavioural health needs. Despite these agencies' key role in identifying need and facilitating services, many individuals do not receive care or end services prematurely. Few studies have explored the experiences of families referred to behavioural health services by such agencies or the extent to which families' perceptions of service need align with those of treatment providers and frontline workers. This study presents findings from a qualitative study of caregivers involved with child welfare agencies who were referred to behavioural health services. Researchers reviewed agencies' case records and conducted in‐depth interviews with 16 caregivers, 9 child welfare caseworkers and 12 behavioural health treatment counsellors. Findings suggest that when deciding to engage in services, caregivers weigh not only their individual and family behavioural health needs but also potential agency intervention, including loss of child custody. Many professionals reported that involvement with a child welfare agency hindered the caregiver's disclosure of behavioural healthcare needs. Implications for managers and practitioners are discussed.     

Measuring Family Caregiver Perceptions of Support in Caring for Children and Youth With Mental Health Concerns

ABSTRACT

This correlational study assessed how families of children with mental illness perceived the levels of support they received from informal and formal resource providers and the associations between perceived support and child outcomes. Adult caregivers (N = 904) of youth receiving public mental health care services were administered the Family Caregiver Perceptions of Support Scale developed by the authors to assess family caregiver perceptions of support prior to and at termination of services. Factor analysis identified three types of caregiver anticipated supports: informal support resources, support for treatment plan influence, and health care resources. The domains were significantly and positively associated with one another but did not uniformly correlate with youth mental health outcomes. The study provides preliminary evidence that treatment gains in youth mental health outcomes are observed when caregivers perceive support in treatment processes. Suggestions for future research are made, stressing the importance of caregivers and providers working together and describing needs related to future scale improvements.     

Educating Our Future Colleagues: Creating an MSW Palliative Care Practicum

As the number of older adults and those with chronic medical conditions continues to rise, the need to train social work students in palliative and end-of-life competencies becomes critical. To address this growing need, the social work team at a large urban academic medical center in the Midwest developed an MSW concentration practicum in palliative and end-of-life care. During the practicum, students receive immersive training in palliative care social work values and the skills required for these specialized assessments, interventions, and evaluations. Their training culminates in their participation on an interdisciplinary team to provide psychosocial support to patients and families receiving palliative and end-of-life care throughout the medical center. This article describes the curriculum, practice immersion, training manual, teaching modules, and structure of student supervision which is applicable to and adaptable for other palliative care social work field instructors.     

Palliative care patients' experiences of healthcare treatment

Kennett C, Payne M. Palliative care patients' experiences of healthcare treatment Int J Soc Welfare 2010: 19: 262–271 © 2009 The Author(s), Journal compilation © 2009 Blackwell Publishing Ltd and the International Journal of Social Welfare. This article reports on a thematic analysis of the opinions of 34 palliative care patients about medical and healthcare treatment expressed in comments, narratives and discussions during a series of facilitated group discussions undertaken as part of training events for medical students. Palliative care patients often have long healthcare careers, which enables them to compare different professionals and services, thus offering a more powerful and complex analysis of patient experience than that obtainable from analysis of complaints or satisfaction surveys, and permits some understanding to be obtained of the attitudes that condition evaluations of services. The patients balanced negative views with positive experiences. They appreciated open, listening, equal and friendly relationships with professionals in which careful explanation fostered their confidence in the overall service. They criticised inflexible services that did not consider their broad needs, and in which relationships with professionals were characterised by busy‐ness and professional distance.     

Developing a Palliative Radiation Oncology Service Line: The Integration of Advance Care Planning in Subspecialty Oncologic Care

Within radiation oncology, there is often minimal attention on radiotherapy with palliative benefits due to the overlying focus on curative treatments. Historically at the University of Pennsylvania, advanced-stage patients are cared for by cancer site-specific teams rather than a more rapid treatment service model that focuses on patients’ symptom needs and larger clinical issues within a palliative framework. Thus, the University of Pennsylvania created a designated palliative radiation oncology team to focus on the complex medical and relational issues of metastatic cancer patients. Social workers play a critical role in patient and family conversations about advance directives, care needs, and end-of-life goals and fears as treatment regimens and outcomes continue to unfold. The palliative radiation oncology social worker developed and instituted a new, formalized assessment tool called the “palliative radiation oncology psychosocial care plan” in the electronic medical record. A retrospective analysis of 26 palliative radiation oncology patients under treatment between February and August 2016 was conducted. Of these patients treated with palliative radiation, 19% completed an advance directive after the social work intervention. This model highlights advance care planning as a best practice and encourages end-of-life discussions as a routine part of the oncology workflow.     

Rethinking Suffering: Allowing for Suffering that is Intrinsic at End of Life

The dilemma so central to the work of providers of palliative and end-of-life care is the paradox of their professional and ethical duty to try to relieve suffering and the limitations of so doing. While the capacity to sit with suffering at the end of life is critical to clinical work, the idea that some intrinsic suffering cannot necessarily always be relieved may model for patients and families that suffering can be borne. Clinicians who encounter unrelievable suffering may feel a sense of failure, helplessness, moral distress, and compassion fatigue. While tolerating suffering runs counter to the aims of palliative care, acknowledging it, bearing it, and validating it may actually help patients and families to do the same. “Sitting with suffering” signals a paradigm shift within the discipline of palliative care, as it asks clinicians to rethink their role in being able to relieve some forms of psychosocial suffering intrinsic to dying.     

Palliative healthcare: cost reduction and quality enhancement using end-of-life survey methodology

American medical institutions throughout the 20th century prescribed high customer satisfaction, but when it came to death, largely ignored it. An accelerated accumulation of esoteric medical information and the application of this knowledge to affect new cures and longer lives instilled an unquestioning reverence for the medical community among the patient population. Diminishing marginal gains in life expectancy, escalating costs related to life sustaining technologies, and a psychographic shift in the dominant consumer base have challenged this traditional reverence. Armed with unprecedented access to medical information, a more knowledgeable and assertive patient population has emerged in the 21st century to institute its own standards of what constitutes quality health care. In terms of end of life care, this has meant recognition that the emotional needs of the dying have been largely underserved by the current American medical model. Patients and their families are no longer willing to accept the traditional medical perspective of death as failure and have numerous international palliative care models that serve as benchmarks of success when it comes to quality of dying. When cure is a possibility, Americans will pursue it at all costs, but when it is not a possibility, they want honest communication and the opportunity to say good-bye to their loved ones. In the context of these emergent needs, life review is offered as a solution. The value proposition targets not only dying patients and their families, but also society as a whole.     

Lesbian Health Care: Women's Experiences and the Role for Social Work

ABSTRACT

Lesbian patients and their families may be exposed to discriminatory practices in the health care system. This qualitative study of 57 Midwestern lesbian parents used open- and closed-ended questions to examine the experiences the respondents had with their primary and secondary health care providers. Four themes emerged from the data: systemic barriers to health care, coming out to providers, seeking lesbian, gay, bisexual, and transgender-friendly health care providers, and concern about mistreatment and prejudice within the health care system. Implications for service delivery, health care education, and directions in policy and research are explored.     

The Social Work Assessment Tool (SWAT)

This paper reports on the last of three National Hospice and Palliative Care Organization initiatives to move hospice and palliative care social workers into the patient/family outcomes arena: the development of the Social Work Assessment Tool. The experience of a team of practitioners and researchers is described, including results of two pilot studies and subsequent SWAT revisions. The major focus is on the current model performance improvement project, in which 19 social workers from 14 hospice and palliative care programs used the SWAT with 101 patients and 81 primary caregivers for a median of 44 days. Quantitative analysis indicated significant improvement in SWAT scores for patients from the first to the second social work visit (t = -2.60, df = 47, p .01). Qualitative interviewing of the social workers indicated some lack of readiness in the field to conduct quantitative outcomes measurement. Additional measures are needed in addition to the SWAT, including qualitative measures, and measures of mezzo and macro practice. Participants indicated that the SWAT was appropriate for use with economically and culturally diverse clients.     

Evaluating the Roles of Professional Geriatric Care Managers in Maintaining the Quality of Life for Older Americans

This study examined the roles of Professional Geriatric Care Managers (PGCMs). In-depth telephone surveys were completed with 19 PGCMs. Qualitative data were coded independently by two researchers. PGCMs reported that most clients and/or families seek services in response to a health crisis or because a family member was providing care at a distance. Most emphasized the importance of treating clients as autonomous decision-makers. Services described as most useful were supporting families and caregivers, being an advocate for clients, conducting initial assessments and ongoing follow up, and educating families about community resources and the financing of long term care. Regarding maintaining the quality of life for their older clients, a number of care managers described assisting clients to live independently at home, arranging for transfer to an appropriate level of care, and helping clients die peacefully with dignity. Major challenges PGCMs encountered were family conflicts and obtaining needed services. Recommendations to improve PGCM practice include increasing awareness of services, and establishing minimum professional standards through certification.     

The Social Construction of Reality in the Realm of Children's Mental Health Services

ABSTRACT

Across the United States, systems of care have emerged to provide mental health care to children and their families; fragmentation inhibiting the success of collaboration by stakeholders is common and compromises these systems of care. Survey data were collected from 1,428 respondents in a Midwestern state to examine problems that exist within systems of care from the perspective of the different stakeholder groups. Stakeholder group membership was based upon the respondent's employment or involvement within various child-serving systems and included those in child welfare, juvenile justice, and education, mental health providers, and consumers (i.e., caregivers/parents). Group differences revealed patterns of “finger pointing” by the stakeholder groups on where specific problems exist within systems of care. The findings provide insight into how the social construction of service delivery and practice emerges as stakeholder groups describe, understand, and evaluate problems within the system of care as a function of their own practice location within the system of care. Future research should consider exploring methods that might minimize the competitive nature of disparate child-serving systems and its potentially negative impact upon system performance and treatment outcomes.     

Advancing Hospice and Palliative Care Social Work Leadership in Interprofessional Education and Practice

The importance of interprofessional collaboration in achieving high quality outcomes, improving patient quality of life, and decreasing costs has been growing significantly in health care. Palliative care has been viewed as an exemplary model of interprofessional care delivery, yet best practices in both interprofessional education (IPE) and interprofessional practice (IPP) in the field are still developing. So, too, is the leadership of hospice and palliative care social workers within IPE and IPP. Generating evidence regarding best practices that can prepare social work professionals for collaborative practice is essential. Lessons learned from practice experiences of social workers working in hospice and palliative care can inform educational efforts of all professionals. The emergence of interprofessional education and competencies is a development that is relevant to social work practice in this field. Opportunities for hospice and palliative social workers to demonstrate leadership in IPE and IPP are presented in this article.     

Examining the Experiences of Fathers of Children with a Life-Limiting Illness

Families who have a child diagnosed with a life-limiting illness (LLI) face substantial challenges resulting from the complexity and devastating impact of the condition and potential closeness of death. The experiences of fathers of a child with LLI have been understudied; therefore, this study explored the stresses, experiences, and strategies of these fathers, including their perceptions about support needs. Based on grounded theory, in-depth semi-structured interviews were conducted with 18 fathers of children with LLI. Six fathers had experienced the death of their child. The overarching themes were stresses, means of coping, and perceived needs for support. Generally, fathers in this study struggled relative to discursive and internalized notions of fathers as providers and protectors for their children, combined with an inability to ease their child’s vulnerability to LLI. Participants were engaged in the care of their child with LLI, but several felt marginalized by health care providers in care planning and staff/family communication. Some fathers recognized and valued their support network while others had few supports. Some described personal growth and desired to help other fathers. Practice implications and recommendations include renewed application of family-centered care, overcoming presumptions about fathers’ roles, and recognizing the impact of LLI beyond physical health.     

Contact between birth parents and children in kinship care in a sample from Spain

Within the context of kinship care, the main objectives of this work are to study the characteristics of contact between foster children and their birth parents, and their relationship with key variables of fostering, the children and their kinship caregivers. The sample included 189 children from Spain and their kinship families. A semi‐structured placement interview and two scales relating to the child–caregiver relationship and child's psychological adjustment were used with the kinship families. The results revealed a significant percentage of foster children who had no family contact. Various visit types, frequencies and durations were described. Kinship care with contact, compared with placements without contact, was frequently characterized by the absence of professional supervision, and an affectionate child–caregiver relationship; moreover, children with contact were perceived to have fewer serious behaviour and socio‐emotional problems and a greater probability of family reunification. The regression analysis showed that the main predictors for how caregivers assessed contact were the children's emotional reaction during visits and the quality of the relationship between the kinship families and the birth parents. These results suggest the need for further research about contact, which will certainly have a major impact on professional intervention with these families.     

Palliative Healthcare: Cost Reduction and Quality Enhancement Using End-of-Life Survey Methodology

ABSTRACT

American medical institutions throughout the 20th century prescribed high customer satisfaction, but when it came to death, largely ignored it. An accelerated accumulation of esoteric medical information and the application of this knowledge to affect new cures and longer lives instilled an unquestioning reverence for the medical community among the patient population. Diminishing marginal gains in life expectancy, escalating costs related to life sustaining technologies, and a psychographic shift in the dominant consumer base have challenged this traditional reverence. Armed with unprecedented access to medical information, a more knowledgeable and assertive patient population has emerged in the 21st century to institute its own standards of what constitutes quality health care. In terms of end of life care, this has meant recognition that the emotional needs of the dying have been largely underserved by the current American medical model. Patients and their families are no longer willing to accept the traditional medical perspective of death as failure and have numerous international palliative care models that serve as benchmarks of success when it comes to quality of dying. When cure is a possibility, Americans will pursue it at all costs, but when it is not a possibility, they want honest communication and the opportunity to say good-bye to their loved ones. In the context of these emergent needs, life review is offered as a solution. The value proposition targets not only dying patients and their families, but also society as a whole.