bluuebunny/crossref_metadata_2025 huggingface dataset:
ECMO for Congenital Diaphragmatic Hernia
Authors: Davis Carl
Published: March 2022

The management of congenital diaphragmatic hernia (CDH) is challenging and complex, not because of the defect per se, which is technically relatively straightforward to correct, but because of the varying impact of pre- and postnatal influences on the underlying cardiorespiratory physiology. The defect is now detected antenatally in over 75% of cases. Efforts to accurately identify high-risk babies have only been partially successful but have been useful in prenatal counseling. Delivery and postnatal management, especially of high-risk neonates with CDH, in specialized units has improved survival, especially since the use of lung-protective strategies was introduced in the 1980s and the later recognition of impaired cardiac function and the impact of pulmonary hypertension on cardiac function. This has led to a more rational approach to conventional management. Despite these improvements in management, a significant number of babies will fail to improve with conventional management, and ECMO will need to be considered. This chapter explores the use of ECMO in managing these babies as well as its limitations and complications. A case discussion followed by a critical review of the literature, as well as critical care board-type multiple-choice questions, summarize this chapter as a concise learning and study tool for the role of ECMO in CDH.
Evidence and Management of a Rare Presentation in Neonatal ECMO
Authors: Billimoria Zeenia C. , Brogan Thomas V.
Published: March 2022

Septic shock is a leading cause of morbidity and mortality in neonates. Sepsis results in the production of inflammatory mediators such as cytokines and chemokines, which lead to multiorgan failure. A small subset of neonates with severe septic shock require cardiorespiratory support with extracorporeal membrane oxygenation (ECMO) support. Therapeutic plasma exchange (TPE) is a means to remove inflammatory mediators from blood to treat severe septic shock. This chapter reviews the current literature on neonatal septic shock and the utility of extracorporeal therapies such as ECMO, continuous renal replacement therapy (CRRT), and TPE in the treatment of severe neonatal septic shock.
ECMO for Pediatric Pneumonia and Sepsis
Authors: Rodriguez-Fanjul Javier , Gargallo Monica Balaguer , Garcia Iolanda Jordan
Published: March 2022

Refractory septic shock is the leading cause of mortality in children. If shock persists despite conventional medical treatment or patients present with cardiac arrest, extracorporeal life support (ECLS) such as extracorporeal membrane oxygenation (ECMO) may be required. ECMO delivers oxygenated blood to the circulation and allows metabolic recovery while the “storm” passes. The use of ECMO for sepsis has historically been associated with high morbidity and mortality due to technical challenges related to the type of sepsis and secondary to flow and transfusion requirements. Except in patients with cardiac arrest, there are no universal ECMO criteria for sepsis. However, poor oxygenation and low cardiac output despite adequate ventilation and fluid resuscitation as well as inotropic and vasopressor support represent an indication. Depending on their age, patients may present with different clinical symptoms: newborns with pulmonary persistent hypertension and right ventricular failure; small infants with left ventricular failure with low cardiac output; child-teenager with distributive shock with increased cardiac output, hypovolemia, and peripheral vasodilation. On the other hand, patients with pneumonia but without sepsis have better results, although they may require longer ECMO runs. This has been a more classical indication for ECMO support, especially in the pediatric population. This chapter reviews concepts associated with pediatric ECMO in severe pneumonia and in septic shock patients.
ECMO in Pediatric Lung Transplantation
Authors: Keshavamurthy Suresh , Rodgers-Fischl Peter , Tribble Thomas A. , Zwischenberger Joseph B.
Published: March 2022

Pediatric extracorporeal membrane oxygenation (ECMO) or mechanical ventilation have previously been considered significant risk factors in lung transplantation in adults and children. Due to attrition while awaiting organs, strategies have become increasingly focused on extending the life of potential lung transplant (LTx) candidates by means of ECMO as a “bridge” to transplantation. Some transplant centers, however, consider mechanical ventilation and/or ECMO prior to lung transplant a contraindication, or relative contraindication, because of perceived postoperative complications, decreased 1-year survival, and concern for sensitization from increased blood transfusion requirements. The chapter focuses on this controversy specifically related to lung transplantation in children.
Weaning and Decannulation of Neonatal and Pediatric Respiratory ECMO Support
Authors: Mendonca Malaika , Davidson Mark G. , Roeleveld Peter P.
Published: March 2022

The intention of extracorporeal membrane oxygenation (ECMO) support in children with respiratory failure is to rest the lungs, give them time to heal, and prevent further lung injury while ensuring adequate oxygen delivery to the entire body. This chapter reviews the available evidence for lung-protective ventilation on ECMO, how to monitor recovery of lung function, and when and how to wean the patient off extracorporeal life support. Achieving adequate weaning from ECMO depends fully on the recovery of the lungs. It is essential that when ECMO is initiated in children with respiratory failure every attempt is made to rest the lungs, prevent secondary injury and give enough time to heal.
Extracorporeal Cardiopulmonary Resuscitation in Children
Authors: Lehoux Juan M. , Peek Giles J.
Published: March 2022

Pediatric veno-arterial extracorporeal membrane oxygenation (V-A ECMO) was first used in the 1970s in patients with postcardiotomy shock. In the subsequent decades, improving outcomes in the postcardiac surgery patient have led to increased V-A ECMO use in ever-widening scenarios and for a variety of indications. Given the very poor outcomes of in-hospital cardiac arrest treated with traditional cardiopulmonary resuscitation (CPR) in children, extracorporeal cardiopulmonary resuscitation (ECPR) has become a viable treatment modality with improved survival to hospital discharge. Children in particular pose a significant therapeutic challenge given their variable size, weight, and wide-ranging etiology of the cardiac arrest. Favorable outcomes after ECPR depend on a wide range of factors, both patient and system dependent. Success depends on the establishment of a sound ECMO program, including established criteria for ECMO team activation, efficient mobilization of resources, standardized cannulation strategies and technique, evidence-based postimplant management protocol, including anticoagulation management, prompt complication management, and preestablished V-A ECMO weaning criteria. In conclusion, ECPR provides superior outcomes compared to traditional CPR. High morbidity and mortality remain a challenge, providing ample opportunity for continued improvement.
ECMO as Bridge to Pediatric Heart Transplantation
Authors: Brunetti Marissa A. , Mascio Christopher E. , O’Connor Matthew J.
Published: March 2022

Heart failure in children is a complex disease process with many etiologies that can require escalating therapies. Extracorporeal membrane oxygenation (ECMO) is used as emergent support for refractory heart failure. Ideally, ECMO provides short-term support as a bridge to recovery or bridge to ventricular assist device placement while awaiting heart transplant for those with end-stage heart failure. Outcomes of heart failure patients vary based on age, underlying diagnosis, and form of mechanical circulatory support required before heart transplant. This chapter reviews the management of heart failure, including ECMO management for those requiring mechanical circulatory support.
Extracorporeal CO2 Removal to Enhance Protective Ventilation in ARDS
Authors: Franchineau Guillaume , Schmidt Matthieu
Published: March 2022

Acute respiratory distress syndrome (ARDS) is a common cause of admission in the intensive care unit, with pressure- and volume-limited ventilation the cornerstone of mechanical ventilation management. Some physiological studies suggested that an additional decrease of the tidal volume and the respiratory rate could benefit reduction of ventilator-induced lung injury. However, the application of this strategy could be limited by hypercapnia. In that context, extracorporeal CO2 removal devices could allow further decrease of the tidal volume, respiratory rate, and driving pressure by extracting CO2 generated by this ultraprotective strategy. However, there are potential complications related to this device, such as bleeding, clotting, and hemolysis, that should be known and promptly recognized by clinicians. This review starts with a clinical case to illustrate this strategy, followed by a review of the actual literature in that field.
Bicaval Dual-Lumen ECMO Cannulation for Lung Transplantation
Authors: Keshavamurthy Suresh , Bazan Vanessa M. , Tribble Thomas A. , Zwischenberger Joseph B.
Published: March 2022

Use of the dual-lumen cannula (DLC) for veno-venous extracorporeal membrane oxygenation [(dl)V-V ECMO] has rapidly expanded in the adult population, particularly when used as a bridge to lung transplantation. This chapter begins with a case report of end-stage interstitial lung disease that resulted in (dl)V-V ECMO for a bridge to lung transplantation. The case is followed by clinical questions and answers highlighting the unique aspects, advantages, and pitfalls of (dl)V-V ECMO management. Increased knowledge and availability of ECMO have improved the likelihood of a positive outcome for refractory conditions, as in the case of end-stage interstitial lung disease patients. Careful patient selection is required in order to successfully bridge a patient to transplant and minimize the occurrence of fatal or debilitating complications.
ECMO Support for Adults With Congenital Heart Disease
Authors: Vohra Akbar , Maybauer Marc O.
Published: March 2022

Survival of patients with congenital heart disease (CHD) is improving with advancements in medical care, surgery, critical care, and therapeutic intervention. Increasing numbers will present with acute deterioration that is amenable to extracorporeal life support (ECLS). This may be as a bridge to recovery or bridge to further definitive treatment, such as palliative surgery or heart transplantation. Adult congenital heart disease (ACHD) patients commonly present with right-sided heart problems either when functioning as a systemic ventricle or as a pulmonary ventricle. This chapter presents a patient with Ebstein anomaly as the stem case and discuss basic anatomical changes, classification of the anomaly, associated abnormalities, clinical presentation at different stages, progress, and general management. Specific problems associated with the use of ECLS in the ACHD subgroup, indications for commencing ECLS, sites for cannulation, control of anticoagulation, specifics of monitoring, critical care management, and common complications and their management are reviewed. Critical care board-type, multiple-choice questions summarize this chapter as a concise learning and study tool for the management of ACHD patients requiring ECLS.
ECMO for Myocardial Infarction With Cardiogenic Shock
Authors: Rob Daniel , Bělohlávek Jan
Published: March 2022

Cardiogenic shock (CS) is a life-threatening complication of cardiac disorders defined by reduced cardiac output with critical end-organ hypoperfusion. Its management is challenging. Standard CS therapy involving catecholamines, inotropes, and early revascularization is often insufficient, and mortality remains 50% despite current advanced therapeutic options. Veno-arterial (V-A) extracorporeal membrane oxygenation (ECMO) has been increasingly used in cases of CS as it allows rapid hemodynamic stabilization. ECMO support serves as a bridge to decision, recovery, cardiac transplantation, or long-term mechanical support device destination therapy. Early ECMO initiation, careful patient selection, and comprehensive intensive care by an experienced team is key to a successful outcome in patients with CS. This chapter reviews the clinical management of ECMO in CS.
ECMO Support for Patients With Myocarditis
Authors: Kunstyr Jan , Lips Michal , Kuchynka Petr
Published: March 2022

This chapter on extracorporeal support for myocarditis is focused on major aspects of this acute heart muscle inflammatory disease, which can occur in a wide spectrum of presentations and in the most serious cases progresses into severe circulatory collapse. Opening with a clinical case report of such acute heart failure, a brief overview is presented of incidence, causes, pathophysiology, clinical presentation, diagnostic methods, treatment, and long-term consequences of acute myocarditis with a special emphasis on core issues of mechanical circulatory support. These include types of support with their benefits and drawbacks, left ventricle unloading methods, and predictors of recovery. The issue of pediatric patients is also mentioned in a separate paragraph.
ECMO for the Complicated Postcardiotomy Cardiac Arrest
Authors: Khoshbin Espeed , Maybauer Marc O.
Published: March 2022

Postcardiotomy (cardiac surgery) refractory cardiogenic shock after cardiac arrest is commonly a fatal condition. In some instances an intra-aortic balloon pump may bridge the failing heart to recovery. However, a stunned myocardium often requires a period of rest only provided through mechanical circulatory support. Veno-arterial extracorporeal membrane oxygenation (V-A ECMO) works just like the standard cardiopulmonary bypass by draining blood from the venous system and returns it into the systemic circulation, hence providing immediate cardiorespiratory support. Failure to achieve spontaneous circulation after cardiac arrest in this situation is an indication for open cardiac massage and institution of either central or peripheral V-A ECMO. V-A ECMO is potentially a life-saving modality in this acute setting. It provides survival benefit with reasonable intermediate and long-term outcomes; however, survival of less than 50% is often expected. Death is commonly caused by complications that lead to multiorgan dysfunction. Hence, a high index of suspicion is needed for the early diagnosis and treatment of associated complications.
Extracorporeal Cardiopulmonary Resuscitation in Adults
Authors: Bělohlávek Jan , Šmalcová Jana
Published: March 2022

Extracorporeal life support (ECLS) is an established mechanical support in cases of severe cardiac and/or respiratory failure. When used during cardiopulmonary resuscitation (CPR) (e.g., implanted during ongoing cardiac arrest [CA]), it is usually called extracorporeal cardiopulmonary resuscitation (ECPR). In other words, ECPR is for the use of ECLS in patients who remain in CA despite conventional CPR or when intermittent return of spontaneous circulation (ROSC) occurs, but repetitive CA reoccurs again. It is essential that ECPR is being used in refractory CA, when reasonable time has been used to try to achieve ROSC or where chance of obtaining and sustaining ROSC is low. ECPR provides mechanical support/replacement for failed circulation or gas exchange, whatever the reason for CA was. The prognosis of refractory CA is generally very poor; therefore, ECPR also bears a grave prognosis. However, in institutions with well-functioning ECPR programs, reasonable survival may be achieved.
Bridging From ECMO to Durable Left Ventricular Assist Device
Authors: Garan A. Reshad , Takeda Koji , Brodie Daniel
Published: March 2022

For patients with end-stage congestive heart failure, durable left ventricular assist devices (LVADs) have been used increasingly as either a bridge to cardiac transplantation or a permanent means of supporting the patient’s circulation. While outcomes for this therapy are best when employed in ambulatory patients with end-stage heart failure, patients with cardiogenic shock (CS) are also considered for this surgery when they are deemed to be dependent on mechanical circulatory support (MCS). While patients requiring extracorporeal life support (ECLS) for stabilization in CS represent the highest risk population for durable LVAD implantation, the numbers of patients supported by ECLS being considered for this surgery are increasing. There are ways in which the risk associated with transition from ECLS to durable LVAD may be reduced. This chapter reviews the practice of implanting durable LVADs in patients supported by ECLS after decompensation into CS.
ECMO in the Management of Heart Transplantation
Authors: Mwaura Lucy W. , Vuylsteke Alain
Published: March 2022

Heart transplant is the definitive treatment of choice for patients with end-stage advanced heart failure. This is not always timely or possible due to the scarcity of donor organs and, in certain situations, patients’ nonoptimum state. Some patients will need some form of cardiovascular support to be bridged to transplantation, and this may involve mechanical support. The donor heart may not function at its best after being transplanted, and mechanical support might be required to temporarily support the circulation. Veno-arterial extracorporeal membrane oxygenation (V-A ECMO) is a form of mechanical support that may be used in patients with acute decompensated heart failure. Its ease of insertion makes it ideal during emergency situations, but the high complication rate makes it difficult to master. This chapter reviews the role of V-A ECMO when used in the management of patients either before or after heart transplantation. The chapter begins with a case discussion followed by a brief literature review and ends with multiple-choice questions.
Weaning and Liberation From V-A ECMO
Authors: Chakraborty Arpan , Chatterjee Dipanjan , Sarkar Kunal
Published: March 2022

Significant advances in extracorporeal technology have led to the more widespread use of veno-arterial extracorporeal membrane oxygenation (V-A ECMO) for cardiac failure. It can be used as a bridge to cardiac transplantation, to a long-term ventricular assist device (VAD), or until recovery of myocardial function. However, procedures for weaning from V-A ECMO are not standardized; rather. is a multifaceted process that encompasses consistent recovery of myocardial and end-organ function; left ventricular ejection fraction (LVEF), though improved, is yet still low at weaning. Moreover, weaning does not signify survival because 20%–65% of patients weaned from V-A ECMO support do not survive to hospital discharge. The chapter discusses the various factors influencing survival after weaning in addition to various weaning strategies proposed in the literature. It summarizes the weaning and decannulation process through a case discussion and review of recent literature.
ECMO in the Awake Patient, Early Extubation, and Physical Rehabilitation
Authors: Salna Michael , Abrams Darryl , Brodie Daniel
Published: March 2022

Intensive care unit–acquired weakness is common and is associated with less favorable outcomes. Physical therapy in critically ill patients may offer considerable benefits to such patients; however, invasive mechanical ventilation, sedation, neuromuscular blocking agents, vasopressors, and inotropes can all be barriers to participation in these activities. In select patients, extracorporeal membrane oxygenation (ECMO) is capable of providing sufficient gas exchange or hemodynamic support to potentially wean these medications and even permit endotracheal extubation—thereby facilitating rehabilitation. While there are unique considerations in physiotherapy participation based on whether patients are receiving ECMO for respiratory or circulatory support, a universal theme is the shared necessity for a multidisciplinary team approach to ensure patient safety during mobilization and ambulation.
Neurodevelopmental Outcome After Pediatric Cardiac ECMO Support
Authors: Hoskote Aparna U. , Kakat Suzan , Brown Katherine L.
Published: March 2022

Extracorporeal membrane oxygenation (ECMO) support is a life-saving treatment for children with refractory cardiac failure that is unresponsive to conventional treatment, and is often deployed in a state of emergency. At the time of cannulation, these children are critically unwell with hemodynamic instability. In addition to the primary etiology of cardiovascular collapse, the process of cannulation in an emergency, mechanical circulatory support (MCS), the ECMO run with the inherent risks of anticoagulation, and other systemic complications during and after the ECMO run, all predispose these children to neurological complications and subsequent neurodevelopmental sequelae. The chapter describes a case of a 13-month-old child with severe myocarditis supported on MCS-ECMO and subsequently a ventricular assist device (VAD). The clinical course and subsequent late post-MCS neurological events and neurodevelopmental problems are outlined. Factors linked to neurodevelopmental outcome, neuromonitoring, and neuroprotection on ECMO are discussed, and subsequent neurodevelopmental outcomes are described. Particularly emphasized is the need for neurodevelopmental surveillance in children who have required cardiac MCS, including the when, what, where, and how of instituting this important follow-up. The focus is on the importance of parental engagement from the outset of the ECMO run to ensure that neurodevelopmental follow-up is continued after hospital discharge. A set of multiple-choice questions are presented at the end of the chapter for self-learning and reflection on the literature reviewed in the case discussion.
Management of ECMO Complicated by Intracranial Hemorrhage
Authors: Fletcher-Sandersjöö Alexander , Broman Lars Mikael
Published: March 2022

In patients treated with extracorporeal membrane oxygenation (ECMO) intracranial hemorrhage (ICH) is a common complication associated with a high risk of mortality and morbidity. This chapter discusses management strategies following diagnosis of ICH in patients on ECMO support. Treating ECMO patients with an ICH represents a complex balance between anti- and procoagulative demands. Surgical treatment is associated with risks but may be indicated in life-threatening lesions. Outcome predictors can help to identify patients for whom treatment is indicated. Better understanding of ICH pathophysiology and predictors will help facilitate early identification of patients at risk of developing an ICH during ECMO.
Neurological Monitoring and Determination of Brain Death in ECMO Patients
Authors: Harper Michael D. , Maybauer Dirk M. , Maybauer Marc O.
Published: March 2022

The use of extracorporeal life support for severe respiratory failure, numerous cardiovascular indications, and cardiopulmonary resuscitation has significantly increased over the last decade. Despite considerable improvements in technology and gain of management experience in extracorporeal membrane oxygenation (ECMO) centers, a significant number of complications remains. Intracranial hemorrhage, brain death, stroke, and seizures are the main neurological complications and contributors to in-hospital mortality. Unfavorable neurologic outcomes or brain death very often result in the withdrawal or limitation of care by family members and may result in organ donation. Neurologic monitoring, imaging, and laboratory analysis play key roles in early diagnosis and prognosis of neurologic complications. This chapter reviews a case scenario, diagnostics, monitoring, and management of a patient on veno-arterial (V-A) ECMO with neurologic complications post–cardiac arrest. A review and discussion of the literature as well as board-style review questions round up the readers experience.
Ethical Considerations for ECMO Initiation and End-of-Life Care
Authors: Kirsch Roxanne , Coleman Ryan D.
Published: March 2022

In the course of providing extracorporeal membrane oxygenation (ECMO) and considering more than one ECMO intervention in a single patient, multiple ethical dilemmas will be faced. Solid grounding in ethical considerations and application will help the care provider equip themselves to work through the nuance and context of the unique cases they face. Advanced reasoning regarding medical options should be embedded with a rigorous ethical framework to guide decisions to offer or withhold ECMO. The chapter provides a complex clinical case with discussion of the multiple ethical considerations and application of moral theory and biomedical ethics frameworks to provide the reader an example of how therapies such as ECMO can be ethically justified and appropriately attended to.
Centering the Lens of Social Justice
Authors: Borden Eucharia , Leimena Meagan Lyon , Sumser Bridget
Published: March 2022

This chapter explores theoretical frameworks to both complicate and clarify lived experience of patients, families, teams, and self through systems of power as well as tools for reflection to catalyze self-awareness. The intent is to understand the impact of the pervasive sociopolitical systems of oppression, namely imperialism, patriarchy, and white supremacy, to inform an anti-oppression social work lens. Through deepening awareness and critical self-reflection, social workers are invited to apply these lenses to their learning, practice, and place within palliative care, healthcare systems, and our larger, interconnected society.
Spirituality and Social Work Practice in Palliative Care
Authors: Reese Dona J. , Becker Holly Nelson , Callahan Ann M.
Published: March 2022

Palliative care is holistic, including biopsychosocial and spiritual dimensions of care. All members of the team must address spiritual needs; much of what patients and significant others want to discuss is spiritual in nature, and spirituality is an important way of coping. Most social workers address spirituality with patients and significant others, but they may not identify the issues they are addressing as spiritual. This underscores the importance of training in this area. This chapter will define spirituality and describe relevant theoretical frameworks, assessment and intervention approaches, and guidelines for referral to a spiritual caregiver.
Guess Who’s Coming to Dinner?
Authors: Higgins Philip C.
Published: March 2022

As palliative social work continues to evolve as a specialty practice, it remains critical to possess and communicate a clear sense of professional identity. This chapter highlights the historical and current challenges and opportunities of palliative social workers to develop individual and collective professional identities, and the ways in which these identities intersect with interdisciplinary teamwork, collaboration with other social workers, and individual clinical effectiveness and job satisfaction. The chapter also delineates both the traditional and more recent team roles palliative social workers have assumed as the healthcare landscape has shifted and palliative social workers have gained a stronger foothold as core team members. The author adapts ecological systems and minority identity development theories to frame these challenges and opportunities in palliative social work identity development from both a cross-sectional and longitudinal perspective.
Palliative Social Work
Authors: Harper Bernice Catherine
Published: March 2022

This chapter reflects a personal and historic perspective, building a foundation for medical social work participation and advocacy in policy development linking to a synergy with hospice and palliative social work. The overarching vision is to humanize healthcare delivery, imagining a seamless system to meet the needs of patients, families, communities, and healthcare providers from life’s beginnings, endings, and in between life’s processes. History is captured through the evolution of social work organizations, credentialing, and the legislative and political issues that affected both the profession and institutions in which social workers practice. The importance of social work’s contribution to policy development and serving patients and families confronting catastrophic diseases and life-threatening illnesses is highlighted to give impetus to this continuing responsibility.
A Commitment to Collaborate
Authors: Farabelli Jill , Leff Vickie
Published: March 2022

A palliative care team uniquely integrates the expert skills of the social worker. As a member of this interprofessional team, social workers can provide leadership and fidelity to the principles of team, including psychological safety, role clarity, trust, and vision. This chapter discusses the role of the interprofessional team in palliative patient care, and specifically how this impacts the role, use, and professional position of the social worker as they navigate a variety of collaborative relationships. Understanding teams from an individual, group, and institutional level can help us not only strengthen the success of palliative care teams but provides extraordinary opportunities for all health social workers who are working on a team. As social workers expand their presence on healthcare teams, we can improve the functioning of the team, patient care, and interprofessional collaboration.
Interventions to Support Children and Adolescents during Parental Illness
Authors: Aliberti Katie
Published: March 2022

Children and adolescents are affected by the serious illness of a parent or caregiver in many ways. Developmental tasks and family processes can be altered by chronic or significant parental illness. Attachment theory and family systems theory provide lenses to understand the impact of parental illness on family functioning and adjustment. Despite obstacles, targeted interventions can help children and adolescents to cope with changes and develop resiliency. Communication is a key intervention that promotes positive adjustment and coping across all age levels. A child’s age and developmental level inform specific interventions, but there is variability related to family functioning, values and beliefs, individual temperament, and other factors. Palliative social workers can utilize their skills to assist families in identifying the needs of their children and addressing them in ways that promote adaptation and resilience.
LGBTQ Patient Palliative Care
Authors: Blotner Charlie , Dotolo Danae
Published: March 2022

This chapter explores community triumphs alongside vulnerabilities and fears that are heightened when patients, partners, and/or their caregivers have LGBTQ identities. Contemporary and historical examples of discrimination in health care settings for the LGBTQ community include pathologizing sexual orientation and gender identities; dangerous and unfounded “conversion therapies”; devastating failures by health care providers, researchers, and the government to respond to the HIV/AIDS crisis; and a lack of recognition of families. To that end, this chapter includes insight into social inequities, family in all forms, the role of disclosure in bereavement, provider acceptance levels and their impact on grief, perceptions of community needs alongside realities grounded in research, truly essential legal and financial considerations, policy implications that span the past decade, and how the social work profession must work toward a future without continued, layered oppression and repression.
A House Is Not a Home
Authors: Schoenfarber Adam , Adams Pamela
Published: March 2022

There are intersecting, bidirectional relationships among trauma, poverty, the prison system, and racism for patients experiencing homelessness. Like those who are securely housed, those who experience homelessness suffer from serious and terminal illness and can be engaged by palliative social workers. People living in nontraditional settings not designed for habitation are, at best, invisible and, at worst, derided as problematic in medical settings. This chapter explores the challenges and importance of palliative care with vulnerable patients who are undomiciled, in shelters, in transitional housing, and those who may not consider themselves homeless and prefer terms such as “doubled up” or “living rough.” Using patient narratives, the chapter explores homelessness through a cultural lens, integrating assessment tools and clinical interventions to improve care and reduce implicit bias and intergroup disgust while strengthening provider empathy. Health social workers help to establish therapeutic rapport and build empathy among interdisciplinary teams working with people experiencing homeless.
Palliative Social Work with Older Adults and Their Families
Authors: Waldrop Deborah , Bern-Klug Mercedes , Cagle John G. , Gardner Daniel S.
Published: March 2022

The older population (65+) grew from 3 million to 52 million in 2018. Yet, as older adults live longer, they do so with more chronic conditions; 60% live with one, and 42% have two or more. The last two decades of life often involve an increasing burden of chronic illness, dependency, frailty, and cognitive decline, which call for an integrated approach that draws together geriatric and palliative care. Using a biopsychosocial-spiritual framework, this chapter describes the lived experience of older adults who live with serious illnesses and their caregivers. The multiple diverse factors that influence an older adult’s journey are illuminated, including race, ethnicity, gender, culture, and social support systems. The systemic challenges which create healthcare disparities and influence older adults’ access to care are presented. The implications for social work practice in geriatric palliative care, including comprehensive assessment, family-centered practice, and interprofessional collaboration, are highlighted.
Person-Centered Practice in an Expanding Palliative Care Landscape
Authors: Onderdonk Chris
Published: March 2022

The landscape of serious illness continues to expand, and with that expansion, the specialty of palliative care is challenged to explore its limits and boundaries while designing innovative approaches to meet the needs of patients, families, and providers. This introduction invites reflection on the opportunities and challenges implicit in the imperative of providing access to palliative care for all people with serious illness. It serves to create context for the chapters that follow in exploring how palliative care principles and practices can be tailored to the nuances and complexities across multiple conditions, diagnoses, and settings.
The Collaboration of Palliative Care and Oncology Social Work
Authors: Bitter Annabelle , Lee Malory
Published: March 2022

This chapter aims to highlight the intersection between the field of oncology social work and palliative care. First, we examine the psychosocial needs of patients with cancer and illustrate how oncology social workers are uniquely equipped to address these needs. Next, we recognize the essential role that palliative care plays in oncology and illustrate an integrated approach that focuses on identifying and relieving distress, while managing symptoms and psychosocial barriers to care throughout the entire disease trajectory. Finally, we explore the many opportunities for oncology social workers and palliative care teams to collaborate to provide high-quality, person-centered care.
Dementia
Authors: Nathanson Abigail , Latimer Abigail L.
Published: March 2022

This chapter examines how health and palliative social workers can identify and attend to the needs of persons with dementia (PWDs) and their care partners, both directly and within their multi- and interdisciplinary teams. Palliative principles reflect the many needs of PWDs and their care partners, addressing symptom burden, caregiver needs, advance care planning, and end-of-life care. Social workers can be empowered to help address structural and institutional challenges, as well as issues specific to illness comorbidity, as the dementia trajectory can be long and involve multiple care settings and relationships. Health and palliative social workers have opportunities to promote PWD personhood and their care partners’ well-being and resilience alongside dementia’s devastating impact. Addressing care preferences early and often is recommended, and there are many professional and user-friendly options to facilitate these conversations. The unique needs of dementia caregivers during bereavement are also addressed.
Palliative Care during the COVID-19 Pandemic
Authors: Oltmann Carina , Gerson Sheri Mila
Published: March 2022

The COVID-19 pandemic has led to much suffering and a myriad of losses around the world, including loss of life, certain freedoms and rituals due to physical distancing, economic strain, and limited access to vital resources. In the face of the pandemic, palliative social workers have the opportunity to provide culturally sensitive care that addresses inequitable access to the alleviation of suffering, quality end-of-life care, and bereavement support. Drawing upon the rich voices of this textbook’s authors and some of their colleagues from across the globe, the current chapter captures the narratives and perspectives of palliative social workers, researchers, and physicians who shared their experiences during COVID-19. Through interviews conducted over the course of 3 months, prominent themes were identified, including issues such as inequitable access to basic needs, personal protective equipment, and healthcare services; flexibility and adaptability in social work roles; preparations made to tend to the seriously ill during the pandemic; the importance of technology in reaching patients and caregivers; the psychosocial impact of physical distancing; advance care planning; social justice; the influence of past crises in shaping current palliative care interventions; and promoting quality palliative, end-of-life, and bereavement support. The chapter concludes with the long-term impact and implications of COVID-19, particularly as it shapes palliative social work in institutions and communities around the world.
Palliative Care Consultation
Authors: Mulkerin Colleen M. , Lepak Katherine S. , Morrison Sara Z.
Published: March 2022

Palliative care consultation can address and reflect the alignment of the field of palliative care and the profession of social work. In this chapter we discuss the growth of palliative care in the United States. There are a variety of practice models, inclusive of teams, that utilize consultation etiquette norms or indicator driven consultation. Indicator driven models may involve disease specific criteria, utilization criteria, or institutional priorities to trigger consultation. The evolution of palliative care is symbiotic with professional societies’ recognition and advocacy for integrated palliative care as a standard of care exemplified by the confluence of the Quadruple Aim and palliative care. . The components of excellence in palliative care consultation are discussed via a synopsis of goals of care and through the domains of palliative social work practice. A focus on opportunities for micro, mezzo, and macro approaches is considered within a structure that attends to clinical boundaries, peer support and intentional collaboration. Collaboration is a principal element in healthcare systems; this chapter introduces a framework for understanding the components that contribute to effective collaboration essential to the pivotal social work role as a liaison between the patient/family and members of the interprofessional team. Transitions are identified as crucial moments when social work can provide continuity of relationship and identify the meaning connected to changing health, function and relationships. Palliative care contributes to improving healthcare that is vital to patient-family experience, healthy teams, and thriving healthcare systems.
Palliative Social Work in the Intensive Care Unit
Authors: Laing Nina
Published: March 2022

The modern intensive care unit (ICU) is one setting in which life and death hang in the balance. Patients are in critical condition or at risk of decompensating quickly and require close monitoring and complex medications to preserve organ function and ameliorate pain. Patients are also often sustained on life support: machines that supply nutrition, maintain breathing, and stand in for failing organs such as kidneys or hearts. Care is managed by interdisciplinary teams of medical professionals (social workers, nurses, physician assistants, nurse practitioners, pharmacists, and doctors) led by physician intensivists, with the orienting goal of the preservation of life. Yet, despite the strenuous efforts of the medical team, death is quite common. Patients and families in the ICU need accurate information, time to process clinical information, and the opportunity to discuss and explore the values they hold that inform the plan of care, particularly when faced with decision-making around advanced life support and end-of-life care.
Outpatient Palliative Care
Authors: Front Anne
Published: March 2022

Outpatient palliative care programs provide necessary and sustained linkage between care settings by building a partnership with patients and families throughout the disease trajectory. With transdisciplinary collaboration, outpatient palliative care teams intervene preemptively to anticipate, prevent, and treat distress for those with serious illness. Palliative social workers hold a necessary role on the outpatient palliative care team and are a bridge between the medical providers and patient to address psychosocial, emotional, and relational needs. Outpatient palliative care programs are diverse in structure but hold opportunities for further improvement in standardization of care, consistent service delivery, and accessing secure funding resources. Society is faced with an aging population and national healthcare crises, including socioeconomic pressures, pervasive healthcare disparities among cultural groups, global pandemics such as COVID-19, and evolving medical technology and pharmacology. As patients with serious illness learn to navigate their healthcare and are asked to make complex healthcare decisions, palliative social workers are needed more than ever to represent and facilitate personalized and systemic change in outpatient palliative care.
Home-Based Palliative Care
Authors: Moore Kennan , Goldstein Christine , Sanderoff Jeanine
Published: March 2022

Home-based or community-based palliative care is a type of specialty palliative care practice designed to meet the needs of persons living at home with chronic, advanced, and, in some cases, terminal illness. With their unique approach to considering the “person in environment,” sensitivity to safeguarding the needs of vulnerable and oppressed populations, and dedication to quality interdisciplinary care, palliative social workers are indispensable members of the home palliative care team. Social work participation in ongoing research and program development is vital to increasing access to home palliative care for patients and families.
Social Work in Hospice Care
Authors: Cagle John G. , Brandon Rachel E.
Published: March 2022

Hospice is an interdisciplinary, person-centered model of care for dying individuals and their families that focuses on vigilant pain and symptom management, with attention to biopsychosocial-spiritual needs. Social workers are a core—and in the United States, a Medicare-mandated—member of the hospice interdisciplinary team. As members of the hospice team, social workers collaborate with other health professionals to improve the quality of life, preparedness, and coping of patients and families dealing with life-limiting illness. With specialized training in communication skills, family dynamics, and mental health, social workers are strongly suited to address the many practical, social, and psychological issues that can arise for both patients and families over the course of an illness and during the dying process. Furthermore, social workers can serve as leaders in the field as we navigate the changing landscape, including greater prevalence of for-profit providers and the national opioid crisis. Ultimately, hospice social workers are critical players in transcending the world of prescriptive, disease-modifying medicine by defining and advocating for holistic, human-centered end-of-life care.
Pediatric Hospice and Palliative Care
Authors: Orloff Stacy F.
Published: March 2022

On any given day in this world, children are informed they have a life-limiting illness. Other families will experience the death of a child. This experience greatly affects the entire family unit as well as the community that encircles the child and family. Learn how social workers are well qualified to conduct an in-depth psychosocial assessment that considers the impact of culture, social determinants of health, and child development on the healthcare experience of the child and family. Social workers use their skills in relational work and family systems to provide interventions that address the needs of the parental figures and siblings. Understand that the clinical interventions offered during the treatment phase will profoundly impact the family’s bereavement experience.
The Integration of Rehabilitative Therapies and Palliative Care
Authors: Schutt Jennifer
Published: March 2022

Those who are diagnosed with serious illnesses often experience symptoms that impact their ability to care for themselves. Symptoms such as fatigue and pain prevent individuals from performing daily tasks, such as walking, dressing, bathing, and transferring. Research has found that the loss of functionality, both physical and cognitive, can lead to poor quality of life and caregiver burnout. Physical medicine and rehabilitation (PM&R) is often underutilized despite the benefits it can have on improving an individual’s ability to perform activities of daily living. There are a variety of barriers such as lack of knowledge and funding that impact referrals to PM&R services. The purpose of this chapter is to better understand the subspecialty of PM&R so it can be better integrated with the practice of palliative care.
When Inner Cities Are Motivated by Compassion
Authors: Francoeur Richard B. , Sergiacomi Kenneth R.
Published: March 2022

Providing palliative care is especially challenging in our inner-city areas. Social determinants of health and living conditions impact access by residents to healthcare, including how, where, and when care is received. Palliative social workers in inner-city settings are sensitive to recognizing cultural beliefs, spiritual supports, the impact of racism and classism, and the need for social justice. It is recommended that palliative social workers engage more fully in mezzo- and macro-level practices, within and across healthcare institutions and inner-city organizations, at the grassroots level as part of a wise overall strategy to advocate for sustainable changes that improve access to quality healthcare. It is especially important to address unmet needs that undermine the health of underserved populations, such as residents without housing or contending with substance abuse. These efforts may include making telehealth more accessible and affordable for use in inner-city community settings. A variety of innovative organizational and community programs and collaborations are promising.
International Palliative Social Work
Authors: Gerson Sheri Mila , Firth Pam
Published: March 2022

Despite evidence of the growing need for palliative care around the world, its integration into healthcare systems remains limited. Optimal palliative care is available mostly in higher-resourced countries, reaching less than 15% of the world’s population. Even in areas with optimal palliative care, both the practice of social work and the social worker’s role within a team vary. The Compassionate Community movement, reflecting public health approaches to health equity in palliative care and addressing social determinants of health, offers a powerful and inclusive model. A public health approach to palliative care, closely tied to social work values, recognizes that healthcare systems are only one component of a larger array of diverse community resources that support people living with serious illness, their families, caregivers, and those living with grief.