bluuebunny/crossref_metadata_2025 huggingface dataset:
The Physician–Patient Relationship
Authors: Fuks Abraham
Published: September 2021

Health care takes place in the relationship between patient and physician that is crafted mutually and relies crucially on the words and behaviors of the participants. The physician has a duty of care to the person who is ill and must therefore engage fully to respond to the needs of the patient. A language of alliance and shared goals that are clearly communicated shifts the doctor’s attention from the disease to the patient. This chapter examines schemas that have been put forward to characterize the clinical relationship and critiques the dual discourses that separate science and art, and posit technical skills and humane attentiveness as competing frames. It reviews phenomenological analyses of the clinical interaction and cautions against a form of autonomy and empowerment that permits clinicians to shed their responsibilities. The chapter explores clinical presence and relational understanding as necessary features of responsive and responsible clinical care.
Healing Metaphors
Authors: Fuks Abraham
Published: September 2021

Patients and physicians come together in the clinical relationship as individuals, not as representatives of a set. The patient seeks to understand the meaning and import of illness and benefits from the comfort and reassurance offered by a trusted physician. The physician fulfills these obligations by providing the requisite expertise, calm demeanor, and modesty of listening to understand the patient’s specific needs. Clinical care is a customized craft, and words are actions that must be suited to the details of the illness and the nature of the ailing person. It demands a physician with a flexible mind and a tolerant attitude who also appreciates the joys of human interactions. Words must be thoughtfully selected in measured doses in order to provide healing and minimize toxicity. This chapter examines the importance of alterity, the trait of humility, and the nature of metaphors that heal. It concludes with the duties of physicianship, the character of the physician, and language as the medium that makes healing possible.
Deepening Prognostic Awareness
Authors: Jacobsen Juliet , Jackson Vicki , Greer Joseph , Temel Jennifer
Published: September 2021

This chapter describes the fourth challenge of serious illness, deepening prognostic awareness. It discusses how to hold conversations about the meaning of the prognosis. These conversations range beyond, and need not include, explicit prognostic disclosures. To engage in them, patients need distress tolerance: the capacity to experience oneself and the current situation without trying to change the situation. Then, through these conversations, patients develop and refine their inchoate worries and reprioritize their values. The chapter discusses, first, how to approach patients who can talk about the future (who more easily pair hopes and worries). It then explores the clinical dilemma of patients who hesitate to talk about the future. It discusses how to invite these patients into difficult conversations based on the clinician’s attunement to how the patient is coping and the illness trajectory. The chapter ends by discussing of how the collaboration between palliative care and oncology clinicians is affected by the patient’s deepening prognostic awareness.
Telemedicine
Authors: Goldenberg Don L.
Published: September 2021

Telemedicine assumed an important role during the pandemic and its increased utilization will continue. Telemedicine worked best when it was integrated through patient portals and with the electronic medical record (EMR). Specialty services employed electronic consultations (E-consults) and telemedicine provided a venue for sharing consultations and critical care across state and regional boundaries. Telemedicine in mental health has been widely utilized and likely to persist at high levels in the future. Telemedicine allows greater access and convenience for patients and more flexibility for providers but equity for patients and providers needs to be addressed. Adequate reimbursement for telemedicine is essential to its future role in healthcare delivery.
Scaffolding Autonomy
Authors: Halpern Jodi , Owen Aleksa
Published: September 2021

Adolescents and adults with intellectual and/or developmental disabilities who have partial capacities to exercise autonomy require respect as well as protection throughout medical decision making. Using an ethical lens that prioritizes respect for persons based on a conception of relational autonomy over beneficence, this chapter explores two contrasting yet related cases where developmental issues may complicate shared decision making. Young adolescents and some adults with intellectual or developmental disabilities may have limited capacities to form and express their values and yet may also need sensitive empathic communication and cognitive scaffolding to make decisions that enact their fundamental values. This chapter examines the conscious and unconscious emotional aspects of conveying diagnoses, prognoses, and other aspects of shared decision making. Empathic scaffolding looks different for each patient in their specific care and familial context but tracks how the patient’s sense of futurity and agency are affected by the clinician’s communication—is the communication accessible, empowering, and offering options that the patient can work with? Empathic health care communication also requires that the clinicians strive for awareness of how their own unconscious psychological processes might be conveying emotional messages to vulnerable patients, including, for example, their suppressed grief after witnessing pediatric patients go through failed bone marrow transplants. Shared decision making thus requires much more than a procedural commitment to respecting individual autonomy but rather calls for addressing the inescapable emotional, relational basis of clinician-patient decision making at vulnerable moments for especially vulnerable patients.
Cross-Cultural Interactions and Shared Decision Making
Authors: Derrington Sabrina F. , Paquette Erin
Published: September 2021

Authentic shared decision making depends on the quality of interpersonal interactions and communication, which can be profoundly influenced by cultural differences. The concept of culture itself is multidimensional and dynamic, including race, ethnicity, language, religion, socioeconomic status, geography, family traditions, perceptions of illness and death, and the culture of medicine itself. Cultural differences between health care providers and patients and families intersect and overlap in important ways. Shared decision making can be derailed when providers hold assumptions and implicit biases about culturally different patients and families. This chapter explores the interplay between culture and shared decision making, highlighting cases in which cultural differences may impact decision making and suggesting recommendations for optimizing cultural humility in all aspects of communication and shared decision making.
Dimensions of Psychotic and Other Problems of Thought and Affect
Authors: Lahey Benjamin B.
Published: September 2021

A third broad domain of correlated dimensions of frequently serious psychological problems is termed psychotic and related problems of thought and affect in this book, for want of a better term. The adjective “psychotic” refers to beliefs and experiences that essentially all members of a society consider to be baseless or false. Many of the dimensions of problems described in this domain involve psychotic beliefs (delusions), perceptual experiences (hallucinations), and other cognitive disturbances that can be said to put the person “out of touch with reality.” In addition, they often involve emotions and atypical energy levels that can be markedly inconsistent with the situation. Cognition, emotion, and energy levels that are not consistent with reality can sometimes take a very serious toll on people, but recent research strongly suggests that each of these problems lies on a continuum and can be viewed in dimensional terms. The Diagnostic and Statistical Manual of Mental Disorders categorical diagnoses that correspond to high levels of these problems include schizophrenia, schizotypal personality disorder, schizoid personality disorder, bipolar disorder, conversion disorders, and dissociative disorders (derealization and depersonalization). In addition, recent research suggests that obsessive and compulsive problems, compulsive rigidity, and some eating problems share features with this domain. Autistic spectrum problems are discussed in this chapter on the basis of limited current evidence regarding their best placement.
Ordinary Origins of Psychological Problems
Authors: Lahey Benjamin B.
Published: September 2021

This chapter delves deeper into the role of environmental influences, without forgetting that environmental influences always play their role in the context of gene–environment correlations and interactions. The environments (i.e., experiences) that, on average, are statistically correlated with a higher risk are easy to identify in studies. They include stressful events, including trauma and economic hardship, maladaptive family and neighborhood environments, racial discrimination, and some characteristics of family environments. Environments do not passively shape behavior into psychological problems, however. People actively transact with their environments, meaning that their environments influence their behavior, their behavior and other characteristics influence their environments, and their characteristics moderate the extent to which their experiences influence their behavior. Many characteristics influence people’s transactions with the environment, including age, sex, race, and ethnicity. It is also useful to examine broad individual differences in cognitive and emotional traits, termed dispositions, which play key roles in people’s transactions with the environment that result in psychological problems. One important aspect of this is that many people engage in stress generation, in which their behavior actively creates stressful events such as conflicts with others that in turn stress the people who engage in the stress generation.
‘Setting down experiments of the sciences’
Authors: Compston Alastair
Published: September 2021

Chapter 2: ‘Setting down experiments of the sciences: printing and the works of Thomas Willis’ starts with a brief account of Willis as a reader, identifying c.100 authors, ancient and contemporary, whom he cites in the treatises. Within a general account of the book trade in the mid-seventeenth century, the tensions relating to censorship and licensing for potential authors are described. Willis’s first books were produced by individuals closely associated with publications of the Royal Society. It is explained that after the fire of London, publication moved to Oxford under the influence of his brother-in-law, Samuel Fell. The chapter provides brief biographies of thirty-four members of the book trade involved in publishing Willis’s books in England. This is followed by a similar approach to description of the book trade in continental Europe where editions of Thomas Willis’s books were published by twenty-three individuals working in the Netherlands, France, Switzerland, and Italy. {149 words}
‘Addicted to the opening of heads’
Authors: Compston Alastair
Published: September 2021

Chapter 6: ‘Addicted to the opening of heads: Cerebri anatome (1664–1683)’ provides a detailed bibliography, using the system described in chapter 4, of thirteen copies of Willis’s second published book in which are included two treatises: 4. Cerebri anatome; and 5. Nervorum descriptio et usus. These are the first of Willis’s treatises to be illustrated; of the twenty-three images engraved on fifteen printers’ plates, some are the work of Christopher Wren. The descriptions of these publications 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 are newly identified. {109 words}
‘An Iliad of evils in the head’
Authors: Compston Alastair
Published: September 2021

Chapter 8, ‘An Iliad of evils in the head: Affectionum quædicuntur hystericæ et hypochondriacæ (1670–1678)’, provides a detailed bibliography, using the system described in chapter 4, of four copies of Willis’s fourth published book in which are included three treatises: 8. Affectionum quæ dicuntur hystericæ et hypochondriacæ; 9. De sanguinis accensione; and 10. De motu musculari. Uniquely among Willis’s writings, the first of these two treatises has not been translated into English. 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. {87 words}
‘The whole dowry of all nature’
Authors: Compston Alastair
Published: September 2021

Chapter 12, ‘The whole dowry of all nature: Opera omnia (1676–1720)’ provides a detailed bibliography, using the system described in chapter 4, of fifteen copies of Willis’s collected works in Latin, the eighth publication, containing treatises: 1–13, variously including William Croone’s treatise De ratione motus musculorum, and with the Latin translation of A plain and easie method for preserving those that are well from the infection of the plague also present in one edition (1695). 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. {100 words}
‘The hearths and altars for the vital fire’
Authors: Compston Alastair
Published: September 2021

Chapter 15, ‘The hearths and altars for the vital fire: medical chemistry and disease’ is based on a close reading of De fermentatione, De febribus, De urinis (1659), De scorbuto (1667), and De sanguinis accensione (1670) in explaining Willis’s concept of how living bodies function. His explanation that the nutritive products of digestion are distributed as chyle, interact with an unknown property of air leading to fermentation, with circulation of the heated blood to body parts where it is further altered, recirculation for refreshment in the lungs, and excretion of residues in several body fluids, is described. An account is given of Willis’s focus on the action of five principles (sulphur, spirit, salt, water, and earth), which heat the blood when inflamed. His description of disorders characterized by fever is described. The chapter ends with a summary of Willis’s treatise on the study of urine in detecting healthy and impaired fermentation. {149 words}
‘Neurologie: the doctrine of the nerves’
Authors: Compston Alastair
Published: September 2021

Chapter 16: ‘Neurologie: the doctrine of the nerves: the brain and nervous stock’ summarizes Willis’s treatises in Cerebri anatome, Nervorumque descriptio et usus (1664), De motu musculari (1670) and De anima brutorum (1672). Willis’s coinage of the term ‘neurologie’, intending this as the doctrine of the nerves based on the anatomy of the cranial nerves rather than the study of diseases affecting the brain and nervous stock, is described. The chapter explains why these treatises are additionally important for assigning function to the cerebrum and cerebellum rather than the ventricles; the concept of cerebral localization; the distinction between voluntary and involuntary, or reflex, movement; Willis’s account of the autonomic nervous system; and his ideas on muscular movement. Apart from these innovative contributions, Willis’s description of the arrangement of blood vessels supplying the brain and spinal cord, for which the book is celebrated, is described. The fifteen engraved plates are included. {148 words}
Core concepts in palliative care
Authors: Cherny Nathan I. , Portenoy Russell K.
Published: September 2021

Having a clear understanding of why we do what we do in palliative care is one of the factors that mitigates against burnout. This chapter explores some of the core values and central concepts in palliative care. The chapter focuses on underlying basic principles including, care, compassion, and empathy and how they influence the right to effective palliative care. Other less commonly addressed core concepts such as resilience, humility, audacity, and sensitivity to differences are discussed. The chapter then explores the issues around goal-focused care and how it is applied in palliative care and the contentious issues as to what constitutes a good death. It is the hope of the editors that this new contribution will provides a frame of reference that can assist clinicians as we navigate many of the challenges confronted in the delivery of palliative and end of life care.
Health economics for palliative care
Authors: Hall Peter S. , Diernberger Katharina , Grant Liz
Published: September 2021

Healthcare costs are escalating due to public demand for, and the increasing availability of, treatment. National frameworks that use economic evaluation as a basis for health technology assessment have been successful at constraining expenditure on low-value treatments primarily by explicitly considering the opportunity cost of new technology adoption or service redesign. At the end of life and in palliative contexts, such methods have not been widely applied and are underdeveloped despite evidence that healthcare costs typically increase with proximity to death. There may be a requirement for the adaptation of standard methods for healthcare resource allocation in this setting, where the goals of care may differ from a curative or preventative context. Health service and financing models may be complex and specific to this setting, with a greater consideration for third-sector provision and informal care. This chapter outlines the core concepts in health economics that are relevant in the planning of palliative services, with specific considerations in the developed and developing world contexts.
Nursing education in palliative care
Authors: Ferrell Betty R. , Mazanec Polly , Malloy Pam , Virani Rose
Published: September 2021

This chapter reviews advances in nursing education as well as future needs to prepare clinical nurses for palliative care. Nurses are an essential component of the palliative care workforce across all patient populations and settings. The delivery of quality palliative care requires nursing care which includes competency in physical, psychosocial, and spiritual care. Nurses work with other professionals to deliver interdisciplinary care which is the foundation of palliative care. Advancing nursing education will strengthen the clinical practice of palliative care to meet established guidelines for quality care in serious illness.
The role of the creative arts in palliative care
Authors: Hartley Nigel
Published: September 2021

The use of the creative arts across palliative care and within hospices in particular is wide-ranging and multifaceted. Over the years they have ranged from being used as a technique for mere distraction by volunteers to being developed alongside the arts in the health and social care movement to being recognized as a registered profession in many countries across the world as the arts therapies, including the four arts disciplines of art, music, dance, and drama. Community arts have also grown in popularity, where the arts in hospice and palliative care have become vehicles for both community engagement and public cohesion around all things death, dying, and bereavement. This chapter focuses on the arts as a many-sided response to the psychosocial and spiritual elements of end of life and bereavement care. Case studies are introduced to provide concrete examples of the breadth of their usefulness in the palliative care setting. The chapter also acknowledges that although the creative arts have certainly grown in stature and acceptance over the last 50 years, there is still much work to be done, including developing solid and respected research paradigms and techniques to further prove the efficacy of creative arts practice.
Speech and language therapy in palliative care
Authors: Luckett Tim , Reid Katherine L. P.
Published: September 2021

Palliative care is an emerging specialty within the field of speech and language therapy. The discipline is currently under-represented both in specialist services and research. Many patients in the palliative phase suffer problems with swallowing (dysphagia) and communication, the core domains of speech and language therapy practice. This chapter provides an overview of difficulties encountered in these domains by people with life-limiting conditions together with common approaches to assessment and management. Assessment and management should be person-centred, integrated into multidisciplinary care, and seek to maintain function using minimal intervention for maximum gain. More research is needed to inform appropriately integrated, person-centred models of speech and language therapy provision that enable difficulties with communication and swallowing to be addressed proactively alongside other symptoms and care needs. Difficulties in these domains are currently under-identified and undertreated in many cases.
Practical considerations including difficult conversations
Authors: Block Susan D.
Published: September 2021

Conversations about palliative care pose multiple challenges for patients, families, and clinicians. This chapter emphasizes the critical role of relationships in communication, highlights common practical challenges that arise in communication about palliative care issues, and proposes specific strategies for addressing them. Examples of language that expresses key clinician interventions is included. Patient-related communication challenges include dealing with anxiety, denial, anger, and grief and sadness. Approaches to family communication challenges focus on the desire to protect the patient, unexpressed grief, and unrealistic expectations, while those related to the clinician include attachment and grief, and discussing prognosis. The role of patient and family preparation, fostered through early, direct, and gentle conversations, is emphasized as a key practice that supports coping and adaptation. Clinicians are conceptualized as supporting patients through attention to the patient and family as persons, the use of skilful interpersonal communication, authenticity, and a commitment to ongoing self-reflection and flexibility.
Principles of drug therapy
Authors: Miles Ruth , Wanklyn Steven , Ross Joy
Published: September 2021

Key principles of clinical pharmacology inform prescribing in palliative care. Concepts discussed in this chapter include issues surrounding patient compliance, the importance of medicines reconciliation, the use of guidelines and formularies, and the role of unlicensed medications. Differences between efficacy, effectiveness, and cost-effectiveness; the nature of a benefit-to-risk analysis; and the meaning of pharmacokinetic variation and pharmacokinetic–pharmacodynamic relationships are then explored. Drug interactions, including adverse drug reactions, are discussed and finally, the topic of pharmacogenomics is covered. More extensive information about general pharmacology is available in comprehensive pharmacology textbooks.
Behavioural and psychosocial interventions for pain management
Authors: Winger Joseph G. , Keeler Carolyn E. , Keefe Francis J.
Published: September 2021

Patients with advanced disease commonly report pain as one of their most feared and distressing symptoms. A biomedical treatment approach that focuses solely on biological factors can be helpful but often fails to adequately address important psychological, social, and spiritual factors that can contribute to pain. Behavioural and psychosocial approaches to understanding and treating pain in patients with advanced disease can be quite helpful in this context. These approaches not only have the potential to reduce pain but also improve patients’ overall adjustment to life-limiting disease. This chapter provides an overview of these approaches. It is divided into four sections, including a summary of the prevalence and undertreatment of pain in patients with advanced disease, a rationale for behavioural and psychosocial approaches to pain management, an overview of the most common and effective behavioural and psychosocial approaches, and clinical considerations and future directions.
Management issues in visceral pain
Authors: Chang Victor T.
Published: September 2021

Visceral pain is pain that arises from, in, or around internal organs. Common examples include chest pain from cardiac muscle injury and functional abdominal pain. In populations with serious chronic illness, visceral pain is common. In those with cancer, for example, well-known visceral pain syndromes include pain from pancreatic cancer and bowel obstruction. Recent advances have increased our understanding of the diagnostic challenges and therapeutic possibilities for patients with visceral pain syndromes. Understanding the basis of referred pain is a key component of patient assessment. The complexity of visceral nociception and pain signalling is being unravelled through anatomical, immunohistochemical, imaging, and functional studies. On a molecular level, families of receptors have now been described that will lead to a future with innovative therapies. This knowledge has developed within the paradigms of pain pathways, peripheral activation, and peripheral and central sensitization, thereby linking and distinguishing visceral pain from somatic and neuropathic pain. Treatment options for visceral pain encompass a wide variety of medical, interventional, and psychological approaches. Appropriate diagnostic measures and careful consideration of therapeutic options are needed to optimize patient outcomes.
Jaundice, ascites, and encephalopathy
Authors: Shingina Alexandra , Larson Anne M.
Published: September 2021

The development of jaundice, ascites, or encephalopathy in the context of chronic liver disease or malignancy is an ominous indicator of advanced disease. In two studies of individuals admitted to hospital with jaundice, up to 42% of patients with malignancy and up to 23% with cirrhosis died during their first admission. The necessity of a willingness to adopt a ‘palliative approach’ to the care of such individuals is obvious. This chapter discusses three features of liver impairment that may be encountered in those for whom palliative care is appropriate.
Breathlessness and other respiratory symptoms in palliative care
Authors: Johnson Miriam J. , Currow David C.
Published: September 2021

Breathlessness is prevalent among palliative care patients with intensity likely to increase as death approaches for many people. There are two main patterns of breathlessness—episodic breathlessness and constant breathlessness—and three separate qualities of breathlessness—air hunger, work or effort, and tightness. Chronic breathlessness is defined as disabling breathlessness despite optimal treatment of the underlying pathophysiology. The measurement of breathlessness includes three domains: sensory-perceptual experience, affective distress, and symptom impact. The management of breathlessness includes specific disease management, non-pharmacological interventions, pharmacological therapies, and, in a very small proportion of people, palliative non-invasive ventilation. A full assessment of the widespread effects of chronic breathlessness on the individual including coping style and help-seeking behaviour is important to tailor interventions. Interventions focused on the breathlessness can be based on a ‘Breathing, Thinking, Functioning’ clinical framework. Oral, low-dose morphine in steady state remains the pharmacological treatment with the strongest evidence base.
Palliative wound and ostomy care
Authors: Tilley Charles P. , Fu Mei R. , Van Cleave Janet H. , Most Allison R. , Comfort Christopher
Published: September 2021

Palliative wound and ostomy care is a nascent area of palliative care, with little research and few evidence-based guidelines to guide practice. Many patients at the end of life will suffer from a wound or ostomy malady, requiring an interprofessional approach led by specialist-level, palliative care clinicians in consultation with a wound, ostomy, and continence nurse. Palliative wound and ostomy care emphasizes an interprofessional, patient-centred approach to alleviate suffering and promote well-being and quality of life through expert symptom management and preservation or restoration of functional performance. A combination of evidence-based wound and ostomy interventions and advanced symptom management science is the hallmark of this specialty.
Lymphoedema and oedema of advanced disease
Authors: Keeley Vaughan
Published: September 2021

Lymphoedema is chronic swelling developing as a result of failure of the lymphatic system to drain fluid and other substances, such as proteins, from the tissues. This chapter focuses on oedema associated with advanced cancer and other diseases, encountered towards the end of life. It is often of multifactorial origin. Management involves an assessment of contributory factors, consideration of which may be reversible, and treatment, which takes into account the patient’s priorities and the balance of benefit versus burden. Modifications of the combined physical treatments used for chronic lymphoedema are often required in this setting.
Delirium
Authors: Agar Meera , Alici Yesne , Caraceni Augusto , Breitbart William
Published: September 2021

Delirium is the most common and serious neuropsychiatric disorder experienced by people with advanced illness. It leads to significant morbidity, and significant distress for the person themselves, family members and staff. Delirium often bodes of a poor prognosis and can significantly interfere with pain and symptom control. Unfortunately, delirium is often under-recognized or misdiagnosed in the palliative care patient, and even when recognized, it frequently goes untreated or is inappropriately treated. Clinicians who care for patients with advanced illness must be able to diagnose delirium accurately; undertake appropriate assessment of aetiologies and consider their treatment with due consideration of treatment goals and illness trajectory; and individualize the pharmacological and non-pharmacological interventions to support delirium recovery, maximize patient safety, and reduce distress from symptoms.
Bereavement
Authors: Kissane David W.
Published: September 2021

The phenomena and trajectory of mourning as a normal adaptive process are differentiated from clinical depression, avoidant and complicated grief, post-traumatic distress disorder, and other forms of pathological grief. Anticipatory grief can be a particular challenge during palliative care. The family is recognized as the major source of social support and the environment in which grief is shared with others. Key risk factors for pathological bereavement outcomes can be identified on admission to palliative care, permitting preventive models of psychological care to be used through palliative care into bereavement. Models of therapy include supportive-expressive, interpersonal, cognitive behavioural, family focused, and specific therapy for complicated grief. Pharmacotherapy can judiciously accompany psychotherapy. Life-cycle issues include bereaved children, siblings, parents, and grief for the very elderly. Grief can be stigmatized and ambiguous in special circumstances, yet positive growth is a desirable outcome from any loss.
The oncologist’s role in delivering palliative care
Authors: Cherny Nathan I. , Kaasa Stein
Published: September 2021

The division of cancer care into initial primary antitumour therapies followed by hospice or palliative care for patients who have progressive disease is anachronistic. Since the goals of medical oncology extend beyond the reduction of tumour burden and the deferral of death and incorporate a quality-of-life dimension, there is need for a continuum in patient care independent of whether the treatment intention is curative, life-prolonging, or symptomatic. Palliative care interventions should be integrated according to the clinical circumstances of the patient. This chapter outlines the oncologist’s role in the delivery of palliative care to cancer patients, emphasizing issues related to communication, interdisciplinary care, and collaborative practice with palliative medicine experts, and emphasizing principles of non-abandonment and continuity of care.
Disease-modifying therapies in advanced cancer
Authors: Dajani Olav , Jordan Karin
Published: September 2021

In many situations, anticancer therapies may be critical components when optimizing patient comfort, function, quality of life, and duration of survival. Optimal care requires the integration of oncological and palliative care and it is very important for palliative care clinicians to be familiar with oncological approaches to improve patient well-being, and also the limitations of such approaches. This integrative role requires that palliative care clinicians have a basic literacy regarding anticancer therapies and the expectations and side effects of their treatments. Together with anticancer therapies, medical oncology should encompass patient-centred care by providing supportive and palliative interventions at all stages of the disease, from the time of diagnosis.
Orthopaedic surgery in the palliation of cancer
Authors: Yakoub Mohamed , Healey John
Published: September 2021

Metastatic spread of cancer to bone is frequent and causes pain, disability, and functional limitation. Non-surgical treatments such as chemotherapy and hormone therapy are effective in early disease. Administration of bisphosphonates or osteoprotegerin inhibitors prevent new ‘bone events’, thereby avoiding pain, radiation, and surgery. Radiotherapy arrests disease and relieves pain in many cases. Surgery is needed when the bone is weak or fractured. It effectively relieves pain and preserves function by bypassing the deficient bone with site-specific reconstructive surgery. Surgery should be selected based on projections of patient survival. New tools to make these projections are now available (https://www.pathfx.org/). New targeted drug therapies appear to be changing metastatic bone disease into a more chronic condition. This will alter the management of local disease in many histological subtypes of metastatic cancers.
Neurological problems in advanced cancer
Authors: Caraceni Augusto , Simonetti Fabio , Martini Cinzia
Published: September 2021

Neurological complications are frequent in patients with advanced cancer. This chapter discusses a variety of neurological problems found in advanced cancer together with their clinical aspects and management, including some suggested regimens for pharmacological therapy. Complications discussed include intracranial hypertension, seizures in patients with advanced illness (including a suggested algorithm for the management of status epilepticus), delirium, brain metastases, spinal cord compression (including an algorithm for the evaluation of back pain), leptomeningeal metastases, base of the skull and cranial nerve syndromes, neurological side effects of drugs used in oncology and palliative care, and paraneoplastic neurological syndromes.
Anaemia, cytopenias, and thrombosis in palliative medicine
Authors: Zhu Nancy , Wu Cynthia
Published: September 2021

Many haematological issues can complicate end of life care, including cytopenias and venous thromboembolism. Anaemia is very common and can significantly impact quality of life; causes include haemorrhage, iron deficiency, nutritional deficiencies, and bone marrow infiltration. Neutropenia from bone marrow failure as a result of disease infiltration or from chemotherapy effects can result in life-threatening infections. Finally, venous thromboembolism is commonly seen in cancer patients as well as those who require prolonged hospitalization. Symptoms can cause discomfort, mortality is increased, and treatment is associated with major bleeding. Understanding the therapeutic options and their adverse side effects is essential in the management of these complex problems. Despite the presence of effective therapies, it is also important to realize that events such as febrile neutropenia and pulmonary embolism are often seen at the end of life and intervention may not always impact prognosis. The risks of intervention should be weighed against expected benefits when developing appropriate palliative care plans.
HIV/AIDS
Authors: Pahuja Meera , Selwyn Peter
Published: September 2021

AIDS has been transformed from a rapidly fatal, untreatable illness to a manageable chronic disease. Early in the AIDS epidemic, HIV care and palliative care were inseparable; over time, these two treatment paradigms diverged. Whereas palliative care for AIDS once focused primarily on end of life care and pain and symptom management related to the manifestations of AIDS-specific opportunistic infections and malignancies, it now addresses the needs of a growing number of HIV-infected patients living for years with the disease and an expanding range of comorbidities, as well as a process that has been described as ‘accelerated ageing’. Comorbid chronic diseases which commonly occur in HIV-infected patients may affect cardiovascular, pulmonary, renal, hepatic, metabolic, and neurocognitive function. Attention to the symptoms that result, and to quality of life issues and psychosocial problems in long-surviving patients, will be increasingly important to support engagement with care and effective adherence with antiretroviral therapy over time. End of life care also remains important, as patients may still die from AIDS, or even more commonly, from end-organ failure, non-AIDS defining malignancies, and/or other complications of ageing and chronic comorbid disease. All these converging factors have now resulted in a new need for the reintegration of HIV care and palliative care, both to help HIV-infected patients live better and longer, as well as to manage late-stage and end of life issues when they emerge.
Predicting survival in patients with advanced disease
Authors: Sinclair Christian T.
Published: September 2021

Prognostication is an important part of care planning. It is also an essential skill to assist patients and their families in care and life planning. Every day, clinicians depend on their experience, knowledge, current research, and models to make prognostic estimates, which are the foundation of many clinical decisions. This chapter reviews current research and understanding about how clinicians formulate and utilize prognostic estimates in clinical settings. Palliative care clinicians must understand prognosis research since it informs individual clinical decisions as well as research design, policy development, and service composition. While no prognostic model is universal, this chapter will prepare clinicians to make the best use of the existing data in prognosis science. Limitations of prognostic methods and the future of predictive analytics will also be explored.
Physiology of dying
Authors: Hui David , Mori Masanori
Published: September 2021

This chapter discusses the physiological changes that occur in the last weeks and days of life, and how this understanding can help in providing better care for patients and families. Starting in the last months of life with an accelerating course in the last several weeks, patients with advanced illnesses typically develop a characteristic decline in their physical function, nutritional status, respiratory function, and cognition as a result of progressive cancer and acute symptomatic complications. These changes correspond with worsening performance status, anorexia-cachexia, breathlessness, and delirium, which are prognostic factors in patients with advanced illnesses. In the last days of life, other physiological changes involving the neurological, neuromuscular, cardiovascular, and respiratory systems become apparent. The presence of telltale signs such as non-reactive pupils, Cheyne–Stokes breathing, inability to close eyelids, grunting of vocal cords, respiration with mandibular movement, death rattle, drooping of nasolabial fold, pulselessness of radial artery, hyperextension of neck, and decreased urine output significantly increase the likelihood of impending death within 3 days, although the absence of these signs cannot rule out impending death. Physiological monitoring such as vital signs, phase angle, cardiac electrophysiology, and bispectral index may provide further insights into the dying process.
Requests for futile or inappropriate interventions near the end of life
Authors: Kon Alexander A.
Published: September 2021

Patients and families may, at times, request interventions that clinicians believe to be either futile or potentially inappropriate. Futile interventions are those that simply cannot accomplish the intended physiological goal. Requests for futile interventions are uncommon, and when a patient or surrogate decision maker requests an intervention that is futile, the clinician should decline the request and carefully explain the rationale for the refusal. More commonly, a patient or surrogate decision maker may request an intervention that the clinician believes to be potentially inappropriate. Potentially inappropriate interventions are those that have at least some chance of accomplishing the effect sought by the patient, but clinicians believe that competing ethical considerations justify not providing them. Conflicts can often be avoided through excellent communication; however, when conflicts arise and a mutually agreeable solution cannot be reached, such requests should be managed by a fair dispute resolution process. Five leading international, multidisciplinary, critical care organizations have published guidance for handling such disputes in the intensive care unit setting. Although the multi-organization futility statement was developed for use in intensive care units, the definitions and process can be employed in a multitude of healthcare settings and should form the basis of handling such requests in palliative medicine.
Autonomy and shared decision-making in a multicultural world
Authors: Cherny Nathan I.
Published: September 2021

The delivery of palliative care is frequently a cross-cultural experience and, in many settings, it involves the care of patients from numerous different cultures and backgrounds. In the care of palliative care patients there are many challenging ethical issues around the issue of autonomy that may be influenced by the culture and traditions of either the patient or their family. Palliative care clinicians often find themselves challenged practically and ethically by issues arising around cross-cultural communication. Despite the input from philosophers, sociologists, psychologists, and communication experts, these issues continue to plague and often confuse individual clinicians as they confront challenging, and sometimes distressing, situations. This chapter aims to equip clinicians with a nuanced understanding of what a culture is and how it affects behaviours and expectations, a nuanced understanding of autonomy, and the role of paternalism when it may sometimes be appropriate and even justifiable to subvert patient autonomy.
Physicians
Authors: Forbes Karen , Gibbins Jane
Published: September 2021

Patients die in almost all areas of medicine; therefore, all doctors must be equipped with the knowledge, skills, attitudes, and behaviours necessary to care for patients at the end of life. This chapter explores the training needs of doctors caring for patients with palliative care needs, how their curricula have developed, and the variety of ways training is delivered. It confirms that learners need to move out of the classroom to interact with patients approaching the end of life with support from seniors who acknowledge patients’ needs, are role models for good communication and care, and facilitate their juniors’ reflection and learning from these encounters. However, the main challenge is to encourage and develop further innovative clinical and research partnerships to design, deliver, and evaluate educational packages to demonstrate how teaching and learning in palliative care best benefits patients and their families.
Research in palliative care
Authors: Hjermstad Marianne J. , Kaasa Stein
Published: September 2021

High-quality research in palliative care is a prerequisite for improving the evidence base, and closing the gap between knowledge and practice to improve patient care. Palliative care research is demanding, as it implies a huge diversity of healthcare services at different levels of care, delivered by multiple professions to vastly different populations. The need for evidence-based, efficient, and cost-effective services is evident, given the rapidly ageing population who live longer with serious and complex illnesses. This calls for collaborative research efforts focusing on both patient-centred and disease-centred outcomes during the disease trajectories and care pathways. This chapter discusses a range of topics focusing on why and how to conduct research in palliative care, and provides information on how to start, proceed, and complete sound research projects, as effectively and targeted as possible. Topics include, among others, challenges in palliative care research, research governance and ethical considerations, controlled clinical trials, and trial planning (including designs, methodology, collaboration, randomization, protocol development, statistical considerations, study conduct, including defining and including patients, randomization, and publication).
The principles of evidence-based medicine
Authors: Johnson Miriam J. , Currow David C.
Published: September 2021

Evidence-based medicine (EBM) has transformed clinicians’ approach to the practice of medicine. In most disciplines, EBM is the fundamental component of decision-making driving expectations of the care received by patients and families. To improve outcomes, EBM blends science and compassion to provide personalized, effective treatments, and consistent application of interventions. The ever-increasing demand for palliative care will continue unabated due to longer lifespans and a shift in the approach to disease from primarily acute illnesses to predominantly chronic conditions. The adoption of EBM by palliative care providers will advance the knowledge and practice base, elevating its position among other medical disciplines that have adopted EBM as the dominant paradigm. The framework of EBM informs a systematic and manageable approach to the overwhelming amount of available evidence. Patients will benefit from EBM practices when palliative care practitioners provide the most effective and personalized care tailored each patient’s needs, characteristics, and preferences.
Ethical issues in palliative care research
Authors: Tate Tyler , Casarett David
Published: September 2021

Recent growth in palliative care research has created a heterogeneous field that encompasses both qualitative and quantitative techniques, and descriptive as well as interventional studies. Despite the valuable knowledge that has been produced by this research, and the promise of future important advances, its progress has been impeded by a persistent uncertainty about the ethics of these studies. For instance, there have been concerns raised about whether patients near the end of life should ever be asked to participate in research, although others have objected to this extreme position. Nevertheless, the combination of ethical and practical issues can create substantial barriers to palliative care research. This chapter discusses five ethical aspects of palliative care research that investigators and clinicians should consider in designing and conducting palliative care research. These include (1) the study’s potential benefits to future patients, (2) the study’s potential benefits to subjects, (3) the study’s risks to subjects, (4) subjects’ decision-making capacity, and (5) the voluntariness of subjects’ choices about research participation.