bluuebunny/crossref_metadata_2025 huggingface dataset:
Substance Use Disorders
Authors: Williams Faith Summersett , Ford-Paz Rebecca E. , Washburn Jason
Published: September 2021

The etiology of substance use disorders in adolescence has been traced in part to untreated or undertreated internalizing disorders. Integrated treatment for co-occurring psychopathology and substance use is highly recommended for this population. There has been increasing interest in transdiagnostic interventions that offer a more efficient, acceptable, and parsimonious model for clinicians to learn to treat substance use that co-occurs with other emotion-based disorders. The Unified Protocol for Transdiagnostic Treatment of Emotional Disorders in Adolescents (UP-A) overlaps with many of the treatment targets proposed in transdiagnostic treatment models for addictions and comorbid emotional disorders. This chapter provides a framework, based on the adolescent addiction treatment literature, to guide implementation of the UP-A with comorbid emotional and substance use disorders.
Avoidant/Restrictive Food Intake Disorder
Authors: Lowe Kristina Duncombe , Eckhardt Sarah
Published: September 2021

The Unified Protocol for Transdiagnostic Treatment of Emotional Disorders in Children and Adolescents (UP-C/A) is an innovative intervention that has been adapted for the treatment of youth with avoidant/restrictive food intake disorder (ARFID). When combined with family-based treatment (FBT) for eating disorders, the UP-C/A is a highly customizable treatment model that addresses the multitude of clinical presentations seen in ARFID patients while also flexibly addressing the high rates of comorbid mental health concerns common in these youth. This chapter discusses important considerations when deciding when and how to add the UP-C/A for ARFID patients, as well as how to troubleshoot common barriers in treatment. Important adaptations to the UP-C/A are also presented, including ways to personalize Top Problems and goals, psychoeducation, exposures, and parental involvement for this unique patient population.
Stepped Care and Telehealth Delivery
Authors: Hong Judy H. , Salloum Alison , Bakhshaie Jafar , Truong Thanh T. , Ehrenreich-May Jill , Storch Eric A.
Published: September 2021

The Unified Protocols for Transdiagnostic Treatment of Emotional Disorders in Children and Adolescents (UP-C/A) have been adapted into a stepped care intervention (UP-C/A-SC) that may be delivered via telehealth. Stepped care models are a type of service delivery system designed to be efficient, effective, accessible, and cost-effective and to personalize service by matching clients to the most appropriate dosage or the best type of treatment for their needs. This chapter discusses the adaptations to the original interventions necessary to deliver UP-C/A-SC as a two-step intervention via telehealth. A case example of a child who responded to the first step of UP-C/A-SC illustrates the components of the stepped care model, including a collaborative decision-making process to determine treatment response status after the first step. To address common implementation issues, barriers to providing UP-C/A-SC and solutions are discussed.
Culturally and Linguistically Sensitive Applications in Other Countries
Authors: Fujisato Hiroko , Kato Noriko , Phillips Dominique , Sáez-Clarke Estefany
Published: September 2021

Cultural adaptation can help maintain a balance between scientifically rigorous interventions and culturally sensitive, effective practice. When introducing the Unified Protocol for Transdiagnostic Treatment of Emotional Disorders in Children and Adolescents (UP-C/A) into a new cultural context, translating the treatment may be sufficient in some countries and regions, while others may require more systematic modification. This chapter discusses specific steps that were taken for adapting the UP-C/A in the context of Japanese culture and presents a case study in Japan. When introducing the UP-C/A into the Japanese context, modifications were made to increase the treatment’s acceptability and comprehension, but there were no significant modifications in the content of the intervention protocol. In the future, as the UP-C/A is introduced into other cultures, its effectiveness will be further evaluated and the cultural adaptations needed to accommodate new cultural groups will become increasingly apparent.
Palliative Models of Care Delivery
Authors: Lookabaugh Britni , Gunten Charles von
Published: September 2021

In caring for patients with chronic complex and life-limiting illness, models of palliative care delivery have developed across the care continuum. While many palliative care services are provided by hospital-based consult teams, palliative care is also delivered in the home, including independent living, assisted living, and group homes; in skilled nursing facilities; and in the outpatient office setting. While high variability exists for delivery of palliative care across the globe, there have been many studies reflecting the value of palliative care across these settings, for quality of end-of-life care as well as for the financial implications in the complex medical care for patients with palliative care needs.
Decision-Making Toolkit
Authors: Myers Jeffrey D.
Published: September 2021

Physician assistant (PA) training is rooted in treating the whole patient and developing a trusting and collaborative partnership with patients and their families. This foundation is critical in the advance care planning (ACP) process for patients who are seriously or terminally ill. Understanding the ACP process, the components and reasons behind them, and the tools for successful discussions and decision-making is a key skill set for all healthcare providers, including PAs. This chapter examines the components of ACP, including advance directives, the POLST paradigm, decision-makers, prognostication, documentation, and legacy planning. ACP is key in capturing what is most important to our patients in terms of their health, their life, and their goals related to both.
Constitutional Symptoms
Authors: Desanti-Siska Lara , Fellows Shawn , Polito Nicholas
Published: September 2021

Some of these are well known to produce distress but others are not as commonly thought of as symptoms which require palliation. Fatigue is nearly ubiquitous at the end of life and in all serious illness patients. While it may not be as obvious as pain or vomiting, it can be just as debilitating. Anorexia is not usually difficult for the patient but can be very hard for family/caregivers to understand. Hiccoughs are obvious but when intractable or chronic are also very uncomfortable and may predispose to poor oral intake. Ascites causes a host of other symptoms uncluding dyspnea and often requires surgical intervention. Fever and sweating cause discomfort but may also contribute to volume depletion and electrolyte disturbances.
Cardiopulmonary System
Authors: Curseen Kimberly Angelia , Taj Jabeen
Published: September 2021

The broad range of palliative care needs are similar in cardiopulmonary disease as in other forms of serious illness. As new interventions reshape their clinical course and prognosis, palliative care has become the new standard of care for patients with serious cardiac/pulmonary diseases. Palliative care providers, including physician assistants, will need to be adept in advanced symptom management and communication skills that are unique to this for both patients and caregivers. This specialty provides opportunities for more nuanced advance care planning and goals-of-care discussions. In addition, earlier primary palliative care will provide more time to address end-of-life issues that are inherent to the care of this population—leading to a smoother transition to hospice.
Assessment and Management of Pain
Authors: Portenoy Russell K. , Ahmed Ebtesam , Krom Calvin
Published: September 2021

The management of pain associated with serious chronic illness is a core objective of palliative care. Successful therapy depends on individualization of the therapy. Management begins with a comprehensive assessment that characterizes the pain and describes it in terms of the biopsychosocial context, which includes the etiology, pathophysiology, and condition or syndrome. Nonpharmacological approaches should be considered, many of which are implemented by other interdisciplinary team members. In some cases, disease-modifying therapies may be used for analgesic purposes. The nonopioids, particularly the nonsteroidal anti-inflammatory drugs, are often adequate for initial pain management. Patients with moderate or severe pain usually are also offered an opioid, and widely accepted guidelines are available to inform safe and effective prescribing. Dose titration is usually necessary, and breakthrough pain may warrant concurrent use of fixed-schedule and “as-needed” therapy. Side effects must be anticipated and managed, and a “universal precautions” approach is prudent to mitigate the risk of abuse and addiction. If a favorable balance between analgesia and adverse effects is not realized, the patient may be poorly responsive and requires reevaluation. Opioid rotation is commonly used in this situation, as is cotreatment with one or more adjuvant analgesics, such as a glucocorticoid, antidepressant, or gabapentinoid. With guideline-based pharmacotherapy and other readily available integrative medical approaches, most patients with pain associated with serious chronic illness can obtain satisfactory relief throughout the course of their illness.
Older Adult Population
Authors: Strothers Harry S. , Patel Dipenkumar
Published: September 2021

Geriatric medicine is a specialty of medicine concerned with physical, mental, functional, and social conditions in acute, chronic, rehabilitative, preventive, and end-of-life care in older patients. Geriatric palliative care integrates the complementary specialties of geriatrics and palliative care to provide comprehensive care for older patients entering the later stage of their lives and their families. This chapter provides physician assistants with an overview of palliative care in older adults, the differences between palliative care and hospice, the understanding and managing of geriatrics syndrome, symptom management in older patients and the complexities of end of life, discussion of goals of care, and communicating with geriatric patients and families.
LGBTQ Community
Authors: Bruessow Diane
Published: September 2021

Sexual and gender minority (SGM) patients are often assumed to be cisgender and heterosexual by healthcare professionals, resulting in missed opportunities for a patient-centered experience. Although lesbian, gay, bisexual, and transgender (LGBT) is the common parlance, SGM is the preferred terminology in science-based settings (e.g., the National Institutes of Health and the Centers for Disease Control and Prevention) because it includes individuals with minority sexual attraction, sexual behavior or gender identity whose sexual or gender identity is something other than LGBT. Despite bioethics placing anti-LGBT bias below professional standards, disclosure places SGM patients at risk of bias and discrimination, such as refusal to treat, stereotyping, and explicit and implicit bias. SGM patient disclosure is frequently inhibited by the anticipation of bias and discrimination from healthcare workers. By establishing a patient-centered practice, informed by the needs of SGM patients and their support network, physician assistants in palliative care medicine can enhance the end-of-life experience of their SGM patient population while optimizing community and individual resilience.
Atmosphere, affordances, and emotion
Authors: Arbib Michael A.
Published: September 2021

The atmosphere of a building is the pervading mood it provides, and can be considered a non-Gibsonian affordance. Atmosphere may frame our experience of a building, but over time our perception of the atmosphere may change. This chapter explores atmosphere in relation to motivation and emotion and the role of the limbic system of the brain. Emotion builds on a set of primordial emotions, but human cognition adds subtlety and supports aesthetic emotions. Paintings by Turner and Constable are examined to take the reader beyond the phenomenology of atmosphere and to explore the idea that the artist “inverts” vision. A visual pathway judges the emerging sketch; a visuomotor pathway updates the sketch. In iterating the process, the sketch changes, but so too will the mental image. An fMRI study of architects observing images of “contemplative” building grounds a critique that suggests challenges for designing further experiments. A crucial obstacle is the distance between cog/neuroscience experiments that seek to isolate the influence of a few key variables and the whole-person experience of using and contemplating a building in all its varied complexity.
Experience and design: Bringing in the brain
Authors: Arbib Michael A.
Published: September 2021

The IBSEN model of Imagination in Brain Systems for Episodes and Navigation explores how the architect’s experience is brought to bear in the design of architecture by building on the VISIONS model of understanding a visual scene and the TAM-WGM model of navigation. IBSEN develops the idea that a building provides both views from various viewpoints and places where particular experiences can be felt, and actions can be performed. For this, the design must support a variety of scripts for both practical and contemplative action and the cognitive maps that relate places for them. Nodes from different maps may be combined as scripts are harmonized with respect to a specific embedding of places in three-dimensional space. The chapter examines the role of the hippocampus in episodic memory and imagination, and observes that memory and imagination, episodic or not, are construction processes. During design, long-term working memory links internal and external memory systems, providing priority access to (but not only to) memory fragments that have proved relevant to the current design process. The designer in some sense “inverts” imagined experiences and behaviors of users of the forthcoming building. As the book ends, the author notes that we are only at the beginning of new collaborative studies that take cog/neuroscience out of the lab and into the building and the street.
From Words to “Making Up People”
Authors: Fuks Abraham
Published: September 2021

The words we use both reflect and shape societal attitudes and inflect the interactions of physicians and patients. Words construct concepts of causality and assign responsibility for illness, often attributing blame to patients. This chapter describes how patients are considered “poor historians” who arrive with “chief complaints” and are “non-compliant” with prescribed medications. It emphasizes the need for physicians to be aware of how their words and demeanors affect their patients and how infantilizing language is detrimental to the well-being of the dependent elderly. It explores the impact of apparently innocent word choices, how medical students learn that talking with patients is considered unimportant, and how words shape our thoughts and how we see the world. The chapter examines how labeling and classifying people may lead to “making up people,” creating ways of being made possible by the new taxonomy and explores this “looping effect” in the instance of “cancer survivors.”
The Nature of Metaphor
Authors: Fuks Abraham
Published: September 2021

Metaphors are ubiquitous features of spoken and written language that permit us to experience one thing in terms of another. “Seeing is believing” helps us understand the abstract concept of belief in terms of the concrete sense of sight. Derived from two Greek words that mean “to transfer,” metaphors transfer certain attributes from the source domain, in our example, Seeing to the target domain of Believing. The chapter explores how metaphors have cognitive properties and allow us to learn new things and to express abstract ideas and complex relations. Metaphors are a powerful trope of figurative language and commonly appear in both formal medical writings and the informal daily interactions of doctors, patients, and the public more generally. The chapter describes how metaphors connect abstract and concrete domains and offers an array of examples that helps us decipher how metaphors originate from human experiences and how they evolve. It explores how metaphors frame perceptions and shape reality and their potency in the language of the clinic.
Consequences of the Verbal Wars
Authors: Fuks Abraham
Published: September 2021

Military metaphors are deeply embedded in the language of medicine and influence thinking and practice. Disease comes to be understood as a thing rather than a process, and diagnosis is the search by the celebrated medical detective for the causative object. As a result, functional illnesses that lack defined physical lesions become less interesting to physicians and the patients with these illnesses may feel abandoned. Methods to search for the locus of disease are increasingly reductionist and ignore the person who is now the bearer of disease rather than a sufferer with impairments of function. MRIs and CAT scans see through the person and computers capture the doctor’s attention. The electronic health record compiles images and numbers but ignores the narrative of the person who is ill. This chapter describes how disease became linked to moral impurity and being imported by foreigners and strangers. Lastly, therapy is misunderstood as restoration to a state of purity.
Pairing Hopes and Worries
Authors: Jacobsen Juliet , Jackson Vicki , Greer Joseph , Temel Jennifer
Published: September 2021

This chapter describes the second challenge of serious illness, pairing hopes and worries. It discusses how clinicians help patients acknowledge worries and explains how, by pairing hopes and worries, patients can step outside of their moment-to-moment feelings enough to gain a broader perspective. This slight distance helps patients to see themselves with clarity and empathy. The chapter describes communication skills for helping patients pair hopes and worries and introduces clinical attunement, a specialist concept that includes aspects of attunement specific to palliative care: being aware of how the patient is coping and of the mostly likely illness trajectory. The chapter ends with skills for talking with oncology colleagues about how patients are learning to pair hopes and worries and to develop prognostic awareness.
Living Well with Serious Illness
Authors: Jacobsen Juliet , Jackson Vicki , Greer Joseph , Temel Jennifer
Published: September 2021

This chapter, “Living Well with Serious Illness,” describes the third challenge. In contrast to optimistic, longer-term hopes (e.g., for a cure) that rely on extraordinary medical fortune, living well applies to the near future and can start now. The chapter discusses how to help patients develop rich attainable hopes, even though their life is or will be limited by a serious illness. It describes what the authors have learned from their research into how coping skills help patients live well and discusses in detail the most important coping skills and how to teach them to patients. Supporting patients in living well improves quality of life and builds the partnership critical as the disesase progresses, when clinicians will help patients live well under ever changing circumstances. Thus, palliative care clinicians should spend most of their time with patients on this challenge.
Acknowledging End of Life
Authors: Jacobsen Juliet , Jackson Vicki , Greer Joseph , Temel Jennifer
Published: September 2021

This chapter, “Acknowledging End of Life,” describes the fifth challenge of serious illness. It discusses how to have conversations about end of life with very sick patients. For some patients, these conversations include overt talk about dying. For others, these conversations may be indirect, using allusive talk or euphemisms. The chapter focuses on the importance of attunement in these conversations, which follow the pace of the illness and may happen before the patient is ready. It also explores how the possibility of the patient dying can create tensions within the medical team and ways in which these tensions can be eased.
KOLs
Authors: Shorter Edward
Published: September 2021

This chapter considers the physicians who advised the pharmaceutical industry in the interest of bringing an effective compound to the attention of the profession. It mentions Roland Kuhn, the Swiss asylum psychiatrist who in 1957 discovered the effectiveness of imipramine in depression and advised about marketing strategies to use to sell the drug. It also highlights the true nature of the testimonials of physicians, which is well known to the industry. The industry’s contempt for them is shown by its vernacular term for sources, which are called “stables.” The chapter focuses on the “stables” of the 1980s that later became Key Opinion Leaders (KOLs). It points out that the sardonic term KOL first appeared in industry correspondence as an insider expression for academics.
The Way Forward
Authors: Goldenberg Don L.
Published: September 2021

The optimal rollout of an effective vaccine will depend upon correcting the flaws in our healthcare system laid bare during the pandemic. Public health must be prioritized and the CDC and WHO provided with the resources to work effectively, devoid of political interference. Healthcare inequities must be tended to, racism acknowledged and erased. Every American has the right to affordable healthcare. The care of the elderly must be rethought and rehumanized. Primary care should be the fulcrum of the US healthcare system with reimbursement based on value. Preventative, rather than reactive, healthcare, employing team collaboration with adequate mental health resources, and reaching across arbitrary boundaries, is essential. The pandemic has raised awareness of healthcare worker safety and well-being, an essential goal for hospitals. Physicians, scientists and all HCWs must rely on science and speak out against misinformation.
Practical Wisdom, Rules, and the Patient-Doctor Conversation
Authors: Brudney Daniel
Published: September 2021

One of the aspirations of today’s standard algorithm for clinical decision making is to avoid physician paternalism. This chapter argues that this aspiration is in tension with what often actually happens at the bedside. The chapter suggests further that what actually happens may be preferable to the rigorous exclusion of paternalism. The current algorithm for bedside decision making has had the effect of limiting the scope for the exercise of the physician’s practical wisdom. Although the physician’s exercise of practical wisdom can verge on paternalism, it can also help patient and physician jointly arrive at the best decision, all things considered. Such an exercise of practical wisdom is what many patients expect and what excellent clinical practice requires. The chapter explores the tension between these competing claims on physician conduct in the care of patients.
Sex Differences and the Dynamic Development of Psychological Problems
Authors: Lahey Benjamin B.
Published: September 2021

Psychological problems are not static; they change considerably over time and can only be understood fully in this dynamic developmental context. During the course of childhood, many psychological problems improve until late adolescence, when there is a surge in the prevalence of many serious psychological problems into early adulthood. From middle age onward, however, there is a gradual decline in psychological problems. These changes can only be appreciated fully by conducting longitudinal studies in which the psychological problems of the same individuals are assessed many times over long stretches of their lives. Importantly, there are large average differences between females and males in the patterns of developmental change in psychological problems. Indeed, the average age differences in many dimensions of psychological problems are different in females and males, and differences between the sexes in psychological problems are not the same at different ages. If it is kept in mind that this only concerns average differences among the sexes and age groups that do not apply to every individual, and stereotyping is avoided by never assuming that every individual is like the average for their group, then the information in this chapter can help readers understand and appreciate the diversity of human lives. The causes of average sex differences and changes with age are not well understood but may include sex differences and developmental changes in gene expression and experiences that are more common at different ages and for the different sexes.
Introduction
Authors: Compston Alastair
Published: September 2021

This chapter introduces the reader to Willis and the premise of the book. It is a book about books: those written by Thomas Willis and those that were informed or influenced by his work.
‘In the tents of the King as well as the Muses’
Authors: Compston Alastair
Published: September 2021

Chapter 1, ‘In the tents of the King as well as the Muses: The life and reputation of Thomas Willis’, starts with the reaction to Willis’s death, aged 54, in 1675. From there, an account is given of Willis’s childhood and education in Oxford and his activities supporting the Royalist cause during the Civil War. After training in medicine, Willis’s casebook, involvement with the Oxford Experimental Philosophical Club and the episode of Anne Greene, spared from dissection through resuscitation after judicial hanging, and his lectures as Sedleian professor of Natural Philosophy in Oxford, are described. After moving to London in 1667, Willis was in demand as a physician and involved with the other Fellows of the Royal Society in reshaping ideas on respiration, fermentation, and muscular movement. The chapter ends with an analysis of the consolidation of Willis’s reputation as a major figure in the history of medicine.{146 words}
‘To delineate with most skillful hands’
Authors: Compston Alastair
Published: September 2021

Chapter 3: ‘To delineate with most skillful hands: illustration and the printed works of Thomas Willis’ explains methods for illustrating the printed works. The engraved frontispieces, three allegorical and one depicting Willis and his circle dissecting a human body, are described. Variations of the engraved portrait, first drawn by David Loggan, are documented. The features of 416 separate ornaments, used by twenty-three printers, are described. These include engraved title pages, head and tail pieces, fleurons and decorated capitals. The provenance and details of forty plates illustrating the texts, including work by Christopher Wren, their different states and copies ‘borrowed’ by other authors are documented. Many illustrations of each type are included. The chapter concludes with one table summarizing the number of images, printers’ plate, and leaves found in a complete copy; and another comparing the states used for each book described in the bibliography. {142 words}
‘To be avoided as if they were sick’
Authors: Compston Alastair
Published: September 2021

Chapter 11. ‘To be avoided as if they were sick: A plain and easie method for preserving those that are well from the infection of the plague (1691–1721)’ provides a detailed bibliography, using the system described in chapter 4, of five copies of Willis’s seventh published book in which is included one treatise: 14. A plain and easie method etc. These descriptions are preceded by a narrative highlighting the main bibliographic issues that characterize the various editions, states, and issues of these copies. Of these, some are already known but others newly identified. {91 words}
‘Of drudgery in pursuit of lucre’
Authors: Compston Alastair
Published: September 2021

Chapter 14. ‘Of drudgery in pursuit of lucre: The London practice of physick (1685–1695)’ provides a detailed bibliography, using the system described in chapter 4, of nine copies of Willis’s thirteenth and fourteenth published books containing extracts that relate to the practice of medicine contained in treatises 2, 6, 7, 11–13 (The London practice of physick, 1685), and one with unspecified contents but probably based on the same treatises (Dr Willis’s receipts for the cure of all distempers , 1701). These descriptions are preceded by a narrative highlighting the main bibliographic issues that characterize the various editions, states, and issues of these copies. Of these, some are already known but others newly identified. {109 words}
Human rights issues
Authors: Brennan Frank , Gwyther Liz
Published: September 2021

Despite advances, there are significant deficits in the provision of palliative care around the world. The reasons for these deficits include absent or deficient national policies on pain and palliative care, restrictive opioid laws, and inadequate education of health professionals in the care of people with life-limiting illnesses. Recent developments have recognized palliative care as a fundamental human right. This chapter examines the background and foundation for this concept, the response of the United Nations and other international bodies, and the ways a human rights approach can advance palliative care development of national palliative policies and service provision.
Policy in palliative care
Authors: Connor Stephen R.
Published: September 2021

This chapter describes all aspects of policy, including definitions, who is it that sets policy, how policy is made, how policy is implemented, the elements of effective policies, the differences between policies and regulations, the policies that are important for palliative care, global versus national policy differences, and barriers to the creation and implementation of palliative care policies. Understanding policy is important, as it is one of the fundamental building blocks of palliative care under the World Health Organization’s public health model. This model underscores the pre-eminence of policy, as it makes possible all the other elements. Palliative care professionals should understand the complexity inherent in policy and embrace it as an important area to master.
Building definitional consensus in palliative care
Authors: Portenoy Russell K.
Published: September 2021

Definitional inconsistencies and confusion about core principles and practices have been part of the history of palliative care for more than five decades. The term ‘palliative care’ was first used to describe clinical services that had a singular focus on end of life care, particularly in the context of cancer; the ‘good death’ was its definitional touchstone. Modern use of the term ‘hospice’ predated this label and described services with the same intent, and ‘supportive care’, a term that emerged decades later, referenced elements that were comparable. Over time, the use of these labels evolved, and although global consensus has not yet been achieved, the development of palliative care as a clinical discipline has promoted greater agreement. Specialists increasingly favour the use of ‘palliative care’ to depict a multiprofessional model of care appropriate for all populations with potentially life-limiting chronic illnesses, the goal of which is to enhance the potential for a satisfactory quality of life and end of life experience by preventing or managing the suffering and illness burden of the patient and family. Around the world, specialists use both ‘palliative care’ and ‘hospice’ to describe programmes that advance the objectives of palliative care; ‘hospice’ is usually preferred when programmes serve those with advanced illness and short prognosis in a home-like environment. ‘Supportive care’ is generally applied to a parallel oncology-based model with a strong focus on problems related to cancer treatment. As specialist palliative care programmes are continuing to emerge globally, expansion of the model of care is occurring through early integration approaches that include the efforts of non-specialists. This chapter discusses the evolving perspectives on the definitions applied to palliative care and related terms, and the core principles and practices that have supported its global development.
Specialist palliative care along the trajectory of illness
Authors: Hannon Breffni , Kaasa Stein , Zimmermann Camilla
Published: September 2021

The benefits of early, integrated palliative care have been demonstrated through several randomized controlled trials. These benefits include improved quality of life, satisfaction with care, symptom management, and, in some cases, survival. Despite heterogeneity in study design and execution, as well as limitation to mainly the oncology population, these trials have answered the question of why patients should receive palliative care early in their disease trajectory. Attention must now shift to the practicalities of early integration; these include questions about when is the optimal time to refer to palliative care services, who is best placed to provide palliative care supports, where early palliative care should be provided, and how best to integrate early palliative care services across the care continuum. This chapter summarizes current evidence supporting early integration of palliative care; describes the respective roles of primary, secondary, and tertiary care providers in the delivery of early palliative care; explores the optimal timing and venues for the delivery of early palliative care; and outlines a hierarchy of integration models to best meet the needs of all patients throughout the illness trajectory. Although rooted in evidence primarily from oncology trials conducted in North American and European settings, these options may be adaptable across a variety of healthcare settings, irrespective of available resources and stages of development of palliative care services. Future research should include patients from non-oncology populations, and focus on models of integration that include primary and secondary providers, rather than relying only on tertiary palliative care.
Palliative care delivery models
Authors: Higginson Irene J.
Published: September 2021

Palliative care has grown rapidly across the globe, with a network of services. It is variably a medical speciality or subspeciality, often with academic departments and with different levels of integration. As the population ages and as treatments extend life for children, younger and older people with chronic diseases, and in particular as multimorbidity is growing, so palliative care is more important. Specialist palliative care service are dedicated to palliative care, have staff trained in palliative care, and in addition to providing clinical care, engage in education, research, and the measurement of outcomes. As palliative care extends to support patients with organ failure, dementia, and earlier in the course of illness, new models are emerging. These include short-term palliative care services, working in an integrated way with other services. Principles common to all services include a holistic approach (physical, emotional, social, and spiritual), considering the patient and those important to them as the unit of care, and with impeccable attention to listening, communication, individualized care, and support in decision-making. People with advanced and progressive illness are found in almost all healthcare settings. Therefore, all doctors, nurses, and other health and social care professionals have to offer and know general palliative care and symptom control. Specialist palliative care teams often support those working in general settings with specific tools and/or training.
The role of the dietitian in palliative care
Authors: Cushen Samantha , Ryan Aoife
Published: September 2021

In palliative care, the aims of nutritional support change with an emphasis on quality of life and symptom relief as opposed to active nutritional therapy. The concept of palliative nutrition has evolved to include all aspects of the palliative trajectory, not just end of life care, with each stage of the trajectory having different nutritional goals. The role of the dietitian in palliative care is a topic that until recently remained relatively unexplored. This chapter introduces the concept of diet as a potential survivorship intervention as opposed to nourishment only and contextualizes the dietitian’s role in palliative care.
Clinical psychology in palliative care
Authors: Strada E. Alessandra
Published: September 2021

Clinical psychologists with specialist knowledge and skills in palliative care can be described as palliative psychologists. Whether as core members of a palliative care team or as consultants, palliative psychologists can become involved soon after a diagnosis of serious illness and continue to provide care during treatment, transitions of care, during the dying process, and in bereavement. The distress patients and family caregivers may experience is on a continuum and may involve both psychological and spiritual factors. When the patient and family coping strategies become depleted or are inadequate to face the challenges imposed by illness, suffering can ensue. The palliative psychologist may offer assessment and management of anxiety, depression, and other types of psychological distress. Grief reactions should always receive special and ongoing attention to determine whether the distress is manageable or whether psychological or psychiatric intervention is warranted. Because of the ongoing interplay of psychological and spiritual concerns, palliative psychologists can effectively use spiritual screening and the spiritual history to understand spiritual and existential needs, and help integrate spiritual care into the psychotherapy session. This offers the opportunity to collaborate with spiritual care providers in the psychospiritual care of the patient and the family. Maintaining professional self-care is also a mandate for palliative psychologists and includes the timely recognition of risk factors for professional distress, protective factors, and meaningful interventions.
The contribution of the clinical pharmacist in palliative care
Authors: Ahmed Ebtesam
Published: September 2021

Pharmacists are exceptionally positioned to deliver expert medication consultation and teaching, thus creating a specialized role within the palliative care team to optimize and rationalize medication use. The role pharmacists play varies among different palliative care practice settings; however, all pharmacists participate in providing pharmaceutical care. Activities of pharmacists can include identifying and resolving adverse drug-related problems, reconciling medication, developing medication guidelines, helping patients and families with medication disposal, and providing medication counselling as well as patient psychological support. Pharmacy organizations support pharmacists as key members of interdisciplinary care, and there is growing recognition of the value of their contribution. This chapter reviews the role of clinical pharmacists and is based mainly on the situation in the US with additional information from other parts of the world. It highlights the positive impact of pharmacy practice through improved symptom control, identifying, preventing, and resolving medication-related problems.
Advance care planning
Authors: Rietjens Judith , Korfage Ida , Seymour Jane
Published: September 2021

Advance care planning (ACP) enables individuals to define goals and preferences for future medical treatment and care, to discuss these goals and preferences with family and healthcare providers, and to record and review these preferences if appropriate. ACP interventions have potentially beneficial outcomes for patients and healthcare systems, including increased completion of advance care directives, alignment of care to expressed preferences, better quality of communication and improved quality of life, reduction of unwanted hospital admissions, and increased use of palliative care. Aspects of ACP have been adopted in national and international healthcare policy. However, due to barriers to ACP, the occurrence in practice remains low. For instance, some people find ACP challenging: they may neither wish to ‘foresee’ the future nor to discuss the implications of their illness. Some may find it difficult to express their wishes or find the emphasis on autonomy to be countercultural. This chapter examines evidence about the effectiveness of ACP, describes the current practices, analyses its barriers and facilitators, and formulates best practices. It also explores the challenges of raising awareness of ACP among the general public, which is a necessary precursor to ACP. It draws on an international Delphi consensus study that was charged with developing a definition of ACP and recommendations for its application.
Definition and assessment of chronic pain in advanced disease
Authors: Wyld Lucy N. , Rayment Clare , Bennett Mike I.
Published: September 2021

This chapter discusses the various definitions applied to pain including chronic, nociceptive, neuropathic, and breakthrough. It gives a broad overview of the epidemiology of pain including its prevalence of greater than 50% in those patients with advanced disease and its under-treatment. The second part of the chapter explains how best to characterize the pain complaint. It acknowledges the importance of a thorough history, including pain characteristics such as severity and associated features. Several pain measurement scales, which can be used both in clinical practice and research, are presented. Clinical examination and imaging are also discussed as aids to diagnosis and management of pain. It concludes with how to assess pain in the context of a palliative plan of care, stressing the need to consider the many challenges that patients face with advancing disease and how the management of pain is affected by other symptoms patients may have.
Opioid therapy
Authors: Cherny Nathan I. , Fallon Marie T.
Published: September 2021

This chapter on opioids is in two parts: basic science and clinical. It includes the current evidence on where and how opioids work to mediate analgesia, non-analgesic effects, and unwanted side effects. In addition, the activity and impact of opioids in brain networks is discussed. These complex dynamic concepts are explained through functional magnetic resonance imaging findings and enables a greater understanding of opioid mechanisms. Mechanism and evidence of less studied side effects such as opioid-induced hyperalgesia along with immune and endocrine side effects are examined. Current genomic evidence and clinical application of this is discussed. The clinical part of the chapter gives complete information on the pharmacology of all opioids which are in clinical use, along with detailed information on when to prescribe and how to prescribe effectively and safely. Finally, the challenges of opioid prescribing in the twenty-first century are addressed. Identification of patient risk factors and appropriate prescribing and monitoring are presented in an agreed and practical way.
Management issues in bone pain
Authors: Hoskin Peter
Published: September 2021

Bone is a common site of metastatic disease with common tumours, in particular, lung, breast, and prostate, frequently spreading to the skeleton. Particular problems may arise from skeletal metastases; pain is a common problem in over 75% of patients and pathological fracture can be catastrophic in terms of mobility and integrity of the spinal canal. The function of the skeleton results in specific challenges when dealing with bone pain, with most patients having multiple sites of metastases, many having variable pain intensity in relation to movement and weight bearing, and more difficult cases progressing to develop neurological complications. Prevention of bone metastases and skeletal damage is an important approach and pain management requires optimization of medication and radiotherapy. Pathological fractures present a specific challenge, best treated surgically and with the role of radiotherapy still poorly defined. A new paradigm has emerged with the recognition that, in some patients, bone metastases may represent an oligometastatic state in which ablative treatment such as stereotactic radiotherapy can result in a prolonged disease-free interval and deferred toxic systemic treatment interventions.
Management issues in neuropathic pain
Authors: Ventzel Lise , Finnerup Nanna Brix
Published: September 2021

Neuropathic pain is a common complication to cancer and cancer treatments, such as surgery, chemotherapy, and radiation therapy. Neuropathic pain may be present in up to 40% of cancer patients and may persist independently of the cancer and affect the quality of life in disease-free cancer survivors. Particular surgery and chemotherapy may cause chronic neuropathic pain in cancer survivors. The diagnosis of neuropathic pain can be challenging and requires documentation of a nervous system lesion and pain in areas of sensory changes. The pharmacological treatment includes tricyclic antidepressants, selective serotonin–noradrenaline reuptake inhibitors (duloxetine or venlafaxine), gabapentin, and pregabalin as first-line treatments. Topical lidocaine 5%, capsaicin 8% patches, botulinum toxin type A, tramadol, and strong opioids are second- and third-line treatments. Steroids may have a role in the acute management of cancer-related neuropathic pain. Due to limited efficacy or intolerable side effects at maximal doses, combination therapy is often required and careful monitoring of effect and adverse reactions is important.
Dysphagia, dyspepsia, and hiccups
Authors: Clark Katherine
Published: September 2021

Dysphagia, or difficulty swallowing, is a complex problem. Although patients may present with dysphagia as an issue that requires palliation, other patients may develop dysphagia as a complication of progressive disease and increasing debilitation. The diagnosis of dyspepsia requires patients to be experiencing one or more of the following four problems: epigastric pain, epigastric burning, postprandial fullness, or early satiety. Dyspepsia may occur either as a functional disorder where the cause is not clear or as a secondary disorder. Hiccup, or more correctly, singultus, is a problem where patients experience a sharp and involuntary contraction of the muscles of inspiration which cause a sudden sharp inspiration and closure of the glottis. For most, this is a short-lived experience. This chapter discusses the definition, prevalence, pathophysiology, causes, presenting problems, investigations, and management of dysphagia, dyspepsia, and hiccups.
Obstructive urinary disorders
Authors: Canvasser Noah E. , Rothschild Jennifer G. , Meyers Frederick J. , Evans Christopher P.
Published: September 2021

Both upper and lower urinary tract obstruction are prevalent in the palliative care setting. Although sometimes related to urological conditions, non-urological aetiologies are also seen. Common causes of lower urinary tract obstruction include benign prostatic hyperplasia in men, an underlying neurological condition, and advanced pelvic malignancy. In the acute setting, bladder decompression with a Foley catheter is the easiest and fastest way to resolve the problem. Common causes of upper urinary tract obstruction include nephrolithiasis and advanced malignancy. This chapter will address the evaluation and management of these common clinical issues.