“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.     

An Ecological Understanding of Caregiver Experiences in Palliative Care

Palliative care is specialized health care to improve quality of life for patients with serious illness and their families through prevention and relief of suffering. A Palliative Care Institute was held in western Washington to capture community voices about diverse needs, strengths, and opportunities for improvement of palliative care. Researchers employed qualitative methods to obtain thematic data, provide real-time analysis, and engage in a multivoting technique to reflect stakeholder interest in individual themes and prioritize larger group interests. Bronfenbrenner’s ecological systems framework was used to explore caregiver experiences. Within the microsystem, caregivers reported difficulties in interactions with medical providers as a key challenge. Within the mesosysytem, interactions between patients and medical providers and the impact on caregivers were explored. Within the exosystem, caregivers reported lack of control over the schedules of personal care staff. Macrosystem influences included impact of local culture on the development of palliative care services. Chronosystem influences include de-medicalization of childbirth and its impact on perceptions of palliative care. Implications include the need for social workers to be proactive in fostering trust and effective communication between care providers and caregivers, and the demand for health care provider training in communication with patients and families.     

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.     

Prisoners of Love? Job Satisfaction in Care Work

Previous research has established that paid care work is typically undertaken by women and that this work is often poorly rewarded in terms of pay and promotion opportunities. Much less is known about the reasons why women enter these jobs or their experiences of this work. This paper examines the motivations and experiences of two groups of care workers: childcare workers and dental assistants in Queensland in 2009 (N=1,767). We examine intrinsic, extrinsic and overall job satisfaction and the effects of job characteristics, work experience and demographic characteristics on job satisfaction. We find that childcare workers are less satisfied with their jobs than dental assistants on all three measures, despite a greater proportion nominating intrinsic reasons for entering the occupation. The most important factors predicting job satisfaction for both groups are day‐to‐day work experiences such as control over weekly rosters and entitlements that enable work‐family balance. We conclude that although love of the job may be a strong drawcard into care occupations for some women, experiences may not live up to expectations. Moreover, there is considerable diversity across these groups in motivations and outcomes indicating that it is impossible to view all care occupations as similar in terms rewards, outcomes and experiences.     

Pediatric Palliative and End-of-Life Care

Abstract

Pediatric oncology social workers are often engaged in the psychosocial care of dying children and their families. Despite their participation on the interdisciplinary team, the role for social work in pe-diatric palliative and end-of-life care has not been clearly defined. This survey of 131 pediatric oncology social workers identified current and best social work practices for care of children and their families at the end of life. Implications for practice, education, and research are discussed.     

Welfare Rights Advocacy in a Specialist Health and Social Care Setting: A Service Audit

Is a specialized welfare rights service, thought important insocial services departments, a valid element of social careservices in multi-professional settings in which social workis increasingly incorporated, where social workers often helpservice users with benefits? An audit of a specialized welfarerights advocacy service, part of social work provision in alarge UK hospice, demonstrated inconsistent referral by nursingstaff, the main referrers, a large workload including frequentcomplex cases and achievement of benefits and grants for patients,carers and families substantially in excess of the cost of theservice. Annual workload for a forty-eight-bed hospice with1,600 home care patients was estimated at 976 typical caseswith nearly 2,928 contacts; about sixty complex cases annuallygenerated a similar workload in themselves. Provision of specializedwelfare benefits advocacy for palliative care patients is foundlikely to meet a substantial need and to require specialistprovision. This may be true of other multi-professional servicesincorporating social workers.     

Palliative sedation: an essential place for clinical excellence

The complexities that converge around palliative sedation invite clinicians to work together to differentiate the issues and come to recommendations and decisions that are humane, ethical, legal, and clinically sound. Whether a crisis or long-term situation exists, the work is essentially the same. It must include critical thinking, clinical expertise, multidimensional assessment, and an array of interventions to assist patients and families in situations where symptoms and suffering are sufficiently intense to warrant exploration of sedation. The many issues inherent in the discussion of sedation at end of life require not that we have the answers but rather that we work with our colleagues to raise relevant questions and integrate both expertise and compassion into end-of-life decisions and care.     

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.     

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.     

A family affair? Kinship care and parental substance misuse: some dilemmas explored

Both the Children Act 1989 and the Human Rights Act 1998 support the principle that children should remain within their birth families wherever possible and that this option must be considered when children are unable to live with their parents. Where parental substance misuse is an issue, family placements, whether formally or informally arranged, are increasingly being used and the support of grandparents, in particular, has been identified as a significant protective factor for children. This paper examines some of the issues that can arise with such placements, particularly in view of the part that substance misuse may play within the wider family system, the impact of parental drug and alcohol use on attachment and child development, and the complex dynamics that can ensue. Drawing on themes emerging from parental substance misuse literature and kinship care research, some practice dilemmas will be explored. While acknowledging the complex aetiology of substance misuse and the dangers of pathologizing family systems in which it is found, some hypotheses about potential risks and challenges will be debated. It will be argued that, although such placements can often provide children with a safe haven, they may demand a specific type of support and monitoring, if children’s welfare is to be safeguarded.     

Supporting familial and community care for children: legislative reform and implementation challenges in South Africa

This article critically evaluates important legislative reforms in South Africa, which, at the height of the AIDS pandemic, are intended to reduce the need for removing children from their families or communities. In a textual analysis of the 2005 Children's Act and the 2006 Children's Act Amendment Bill, the shift in focus from individual interventions to a developmental approach incorporating prevention and early intervention is explained. New family service and alternative care orders such as partial care, shared care, cluster care and support for child-headed households are described. Although these creative solutions have considerable potential, there are gaps in the legislation that require supplementary wording. Drawing on the work of researchers and commentators, it is also shown that an inappropriate approach towards implementation has commenced, which harms rather than assists children. Recommendations are made for improving implementation that may be of relevance to other countries faced with similar challenges.     

The problem of inadequately relieved suffering

A request for euthanasia or assistance in suicide usually derives from severe patient distress and indicates significant suffering. Although the Hippocratic purview of medicine requires that suffering be acknowledged, its causes be identified, and that steps be taken to provide adequate relief, an appreciation of the diversity of factors that may contribute to suffering underscores the need for methodical assessment and familiarity with a range of therapeutic strategies. It may be argued that when other options to effectively relieve suffering are available, euthanasia and assisted suicide fall outside of the purview of Hippocratic medicine. Given the existence of other options, the capacity for human maleficence, and the lack of resources currently allocated to the relief of suffering, this paper presents a number of reservations regarding the legalization of euthanasia and assisted suicide. In addition, it is suggested that the current community focus on the issue of inadequately relieved suffering should be harnessed to work toward the provision of care that would diminish the impression that elective death is necessary to ensure adequate relief.     

“A game of two halves?” Understanding the process and outcomes of English care home closures: Qualitative and quantitative perspectives

With care services increasingly delivered via a market there is always a risk that care homes could fail financially or struggle in terms of quality, ultimately having to close. When this happens, the received wisdom is that subsequent relocation can be detrimental to the health and well‐being of older residents (possibly even culminating in increased mortality). However, there is very little formal evidence in the United Kingdom (UK) or beyond to guide policymakers and local leaders when undertaking such sensitive work. Against this background, this article reports findings from an independent evaluation of what is believed to be the largest care home closure program in the UK (and possibly beyond). This consisted of qualitative interviews with older people, families, care staff, and social work assessors during the closure process in one case study care home and one linked day center, as well as self‐reported health and quality of life data for older people from 13 homes/linked day centers at initial assessment, 28 days after moving and at 12‐month follow up. The study is significant in presenting public data about such a contested topic from such a large‐scale closure process, in its focus on both process and outcomes, in its mixed‐methods approach, and in its engagement with older people, families, and care staff alongside the use of more formal outcome measures. Despite significant distress part‐way through the process, the article suggests that outcomes either stayed the same or improved for most of our sample up to a year after moving to new services. Care homes closures may thus be a “tale of two halves”, with inevitable distress during the closure but, if done well, with scope for improved outcomes for some people in the longer term. These findings are crucial for current policy and practice given that the risk of major closures seems to be growing and given that there is virtually no prior research on which to base local or national closure processes. While some of this research is specific to England, the underlying issue of care home closures and lessons learned around good practice will also apply to other countries.     

Managing the Family: Productivity, Scheduling and the Male Veto

This paper argues that research, analysis and policy innovations focused on how households combine paid work with care responsibilities are driven to too great a degree by preconceptions of “the problem” that do not take sufficient account of how families themselves understand their work and care roles and the choices they are making. The evidence of 246 SOCCARE interviews across five European countries (Finland, France, Italy, Portugal and the UK) is that the variables that are conventionally accepted as having fundamental significance (family‐friendly policies and generous care services, flexible working hours, women's work–life preferences, family type, national labour markets, cultural differences) are less important than is often suggested. More important are time pressures and the idiosyncratic factors that constrain the work and care timetables that families are able to construct. We characterize these as “scheduling problems”. They occupied a large part of the accounts of their lives provided by our respondents and are a primary dimension within which their combinations of paid work and care responsibilities need to be understood. The difficulties our respondents faced in coordinating the work and care activities of their families bear a striking similarity to the problems described in the operations research literature on small businesses. Within the context of these scheduling problems a second important factor emerged: the preferences and behaviour of men who played a critical, though often passive, part in the construction of work and care timetables of the families. We characterize this effect as the “the male veto”.     

Comfort and Confidence Levels of Health Care Professionals Providing Pediatric Palliative Care in the Intensive Care Unit

ABSTRACT

Most childhood deaths that occur in the hospital happen in the pediatric intensive care unit. Providing pediatric palliative care in the intensive care unit comes with unique challenges due to the acute care, curative and often medically aggressive focus of these settings. In this study, 190 PICU health care professionals reported on their comfort and confidence in providing palliative care. Findings indicate that professionals report only a moderate level of comfort and confidence in this type of care in the pediatric ICU. For physicians and nurses, comfort and confidence was significantly higher for those who had practiced 8 years or more. Practitioners reported less comfort in providing psychosocial care. Implications for the social work role on the interdisciplinary team and suggestions for future research are discussed.     

Pediatric palliative and end-of-life care: the role of social work in pediatric oncology

Pediatric oncology social workers are often engaged in the psychosocial care of dying children and their families. Despite their participation on the interdisciplinary team, the role for social work in pediatric palliative and end-of-life care has not been clearly defined. This survey of 131 pediatric oncology social workers identified current and best social work practices for care of children and their families at the end of life. Implications for practice, education, and research are discussed.     

The Attitudes of Social Work Students Toward End-of-Life Care Planning

This study examined the attitudes of social work students toward end-of-life care planning, as well as their degree of willingness to engage in this area of social work practice. Factors associated with their attitudes were measured through structured surveys completed by 102 social work students (N = 102) at a school of social work in the southeast. Results indicated that these social work students tended to have positive attitudes toward end-of-life care planning in general. Moreover, these attitudes were positively associated with preference for pain relief treatment, higher levels of comfort when discussing death, more emphasis on self-determination, and apprehension of conflicts of self-determination. The results of this study underscored the increased societal need for recognition of personal preferences in end-of-life care, higher levels of comfort when discussing death, and an increased commitment of social workers' to maintaining the ethical principle of the client's right to self-determination in end-of-life planning. While this is not surprising, it points to a continuing need to re-assess where the field stands in its preparation of social work professionals who will work closely with people who are dying and their families.     

Children living with parental substance misuse: A cross‐sectional profile of children and families referred to children's social care

Parental substance misuse is a significant public health and children's rights issue. In the United Kingdom, social workers frequently work with children and families affected by substance misuse. However, relatively little is known about this population, particularly at point of referral to children's social care. This paper reports on the largest known study of parental substance misuse as a feature of children's social care work in England. The paper provides a cross‐sectional profile of 299 children living with parental substance misuse and referred to children's social care in one local authority in England. Data were collected from social work case files at the point of referral to social care about the child, family, the wider environment, and parental substance misuse. The findings show that children affected by parental substance misuse frequently had other support needs relating to their well‐being and mental health. Children were also likely to be experiencing other parental and environmental risk factors. The significant historical—and in some cases intergenerational—social care involvement for some families indicates potential issues with the capacity of services to meet needs. Recommendations for practice are discussed with a particular focus on the need for early, comprehensive support for children and families.     

Hispanic Hospice Patients’ Experiences of End-Stage Restlessness

ABSTRACT

End-stage restlessness, or terminal agitation, is experienced by some patients during their final days and is characterized by physical, emotional, or spiritual distress, agitation or anxiety. End-stage restlessness negatively affects the patient’s death experience and can be distressing to the family and care team. Using the 2007 National Home and Hospice Care survey, this study examined factors associated with experiencing end-stage restlessness among non-Hispanic white and Hispanic hospice patients deceased at time of discharge. Results showed that being Hispanic/Latino, experiencing dyspnea, pain, and receiving palliative sedation treatment were risk factors for experiencing end-stage restlessness. The association between pain and restlessness was stronger for Hispanics compared with non-Hispanic whites. The Hispanic population remains underrepresented and little is known about the patient-centered experiences of Hispanic hospice users. Findings indicated that dying Hispanic patients continue to experience pain and other negative symptoms, even when hospice care is in place. Thus, it is important that social workers provide education to interdisciplinary team members about culturally competent practices, and advocate for a patient-centered approach to care.