bluuebunny/crossref_metadata_2025 huggingface dataset:
Patient-reported outcome and quality of life research policy: Japan Clinical Oncology Group (JCOG) policy
Authors: Ishiki Hiroto , Kikawa Yuichiro , Terada Mitsumi , Mizusawa Junki , Honda Michitaka , Iwatani Tsuguo , Mizutani Tomonori , Mori Keita , Nakamura Naoki , Miyaji Tempei , Yamaguchi Takuhiro , Ando Masahiko , Nakamura Kenichi , Fukuda Haruhiko , Kiyota Naomi ,   PRO/QOL research Committee of Japan Clinical Oncology Group
Published: January 2023

Assessments of patient-reported outcomes and health-related quality of life in cancer clinical trials have been increasingly emphasized recently because patient and public involvement in cancer treatment development has been promoted by regulatory authorities and academic societies. To assess patient experiences during and after cancer treatment, there is interest in implementing patient-reported outcome and health-related quality of life assessments into cancer clinical trials.

The Japan Clinical Oncology Group quality of life ad hoc committee previously created a version of the Quality of Life Assessment Policy in 2006. Recently, there has been increasing demand from Japan Clinical Oncology Group researchers to assess patient-reported outcome/health-related quality of life in clinical trials. Although guidelines are available regarding planning and reporting clinical trials that include patient-reported outcome/health-related quality of life as an endpoint, there are still issues regarding the lack of consensus on standardized methods for analysing and interpreting the results. Hence, it was considered necessary to reorganize the Japan Clinical Oncology Group patient-reported outcome/quality of life research committee and to revise the former patient-reported outcome/quality of life research policy to promote patient-reported outcome/health-related quality of life research in future Japan Clinical Oncology Group trials.

The purpose of this Japan Clinical Oncology Group patient-reported outcome/quality of life research policy is to define patient-reported outcome/health-related quality of life research and provide guidelines for including patient-reported outcome/health-related quality of life as an endpoint in Japan Clinical Oncology Group trials.
The aid of microsurgical instruments in nasolabial cyst enucleation. A report of two cases with critical review of the therapeutic approach
Authors: Tilaveridis Ioannis , Venetis Gregory , Tatsis Dimitris , Kalaitsidou Ioanna , Zouloumis Lambros
Published: January 2023

Nasolabial cysts are rare non-odontogenic cysts related to epithelial remnants of the nasolacrimal duct, slowly enlarging and provoking extraoral swelling in the nasolabial fold with obstruction of the naris. Two patients of large unilateral nasolabial cysts are reported, appearing as cosmetically unappealing distention of the nasolabial fold. Diagnosis is based on clinical characteristics. Computed tomography imaging reveals the dimensions of the cyst, the correlation to the nasal cavity and might depict a depression on the labial surface of the maxilla. Intraoral surgical enucleation of the cystic wall or nasal marsupialization is the main treatment modalities. However, both procedures are related to a small percentage of recurrence. Microsurgical instruments were used to dissect the cystic wall from the nasal mucosa. The aim of this paper is to stress the implementation of microsurgical instruments to separate the cystic wall of the nasolabial cyst from the thin and friable nasal mucosa to avoid recurrence.
Duplicated inferior vena cava-trifurcated portal vein: a rare anatomical variation encountered during Whipple procedure
Authors: Chrysikos Dimosthenis , Delis Spiros , Smerdi Dimitra , Charitaki Eugenia , Solia Eirini , Troupis Theodore
Published: January 2023

The inferior vena cava (IVC) is the largest single vein in humans. However, during embryogenesis, abnormalities can occur resulting in a duplicated IVC. The portal vein (PV) offers the main blood flood to the liver, forming by the left and right PV. A number of anatomical variations are noticed, underlying the great importance of the pre-operative imaging workup. This case report presents a duplicated IVC and a trifucated PV that were incidentally found in an 82 year-old Caucasian male with pancreatic ductal adenocarcinoma who underwent pancreatoduodenectomy (Whipple procedure). Although some anatomical variations, including the duplication of the IVC and the trifurcation of PV, may be rare to the general population, the suspicion of their existence should always be taken under consideration from surgeons during hepatobiliary or retroperitoneal operations.
Culturally Responsive School-Based Practices
Authors: Goforth Anisa N. , Pham Andy V.
Published: January 2023

As the trends continue in our country’s schools toward a more racially, ethnically, and linguistically diverse K–12 student population, school-based professionals have an important role in supporting students’ mental health and learning. Practitioners, including school psychologists, school counselors, and social workers, are expected to have the knowledge, skills, and dispositions to provide culturally responsive services to promote safe, supportive, and inclusive schools. Using a framework that integrates cultural humility and social justice, this book provides practical strategies for implementing culturally responsive practices in assessment and interventions that recognize assets of culturally and linguistically diverse populations, including refugee, immigrant, racial, and ethnic-minoritized students and English-language learners. The book emphasizes positive psychology and collaborative approaches that minimize the use of deficit thinking, which historically has contributed to systemic inequities, oppression, and disproportionalities of student outcomes in schools. For the emerging and experienced professional, this book is organized into three parts: (1) the foundations of culturally responsive practice, (2) culturally responsive assessment, and (3) culturally responsive interventions to support resilience and well-being. It provides foundational knowledge and practical strategies for educators, trainers, and practitioners who deliver educational and mental health supports in schools, including culturally responsive assessment, evidence-based interventions, counseling, or multi-tiered systems of support. Given the increasing diversity of students and families, the book highlights the intersectionality and heterogeneity within these groups. With case examples, practical resources, opportunities for self-reflection or critical reflexivity, and discussion questions, readers can develop and demonstrate cultural humility, cultural responsiveness, and advocacy within educational settings.
The 4Rs of Culturally Responsive Practice
Authors: Goforth Anisa N. , Pham Andy V.
Published: January 2023

Culturally responsive practice includes the intentional practice of critical reflexivity, relationships, responsiveness, and relational empowerment. The concepts of reflexivity and cultural humility come together as the result of trust between a practitioner and the students, families, and communities they serve. Relatedly, relationships (specifically family–school relationships) can serve as a keystone in fostering communication and trust. When building these relationships, however, it is important to consider making connections through cultural knowledge and by understanding another culture’s perceptions of mental health. Throughout all this, it is important to adapt practices as needed given the complexity and individuality of culturally and linguistically diverse students. The combination of using evidence-based practices and a strengths-based approach will highlight student strengths and bring empowerment to those involved in the intervention.
Session 10: Review and Relapse Prevention
Authors: Woods Douglas W. , Twohig Michael P.
Published: January 2023

This chapter provides a review of the overall treatment and discusses relapse prevention. Monitoring and checking in help prevent hair-pulling tendencies from returning. Lapses may occur during certain situations after treatment ends, and continued practice of the skills learned during treatment can prevent lapses. Relapse refers to a full and persistent return to old behaviors of hair pulling. The patient must be vigilant when practicing habit reduction training and trigger reduction strategies to prevent lapses or relapses. The chapter reviews the processes covered during treatment that relate to controlling urges and practicing skills within and outside of therapy sessions.
Sessions 6 and 7: Defusion from Your Inner Experiences: You Are Not Your Urges to Pull
Authors: Woods Douglas W. , Twohig Michael P.
Published: January 2023

This chapter describes the sixth and seventh sessions of the Acceptance and Commitment Therapy (ACT) Enhanced Behavior Therapy for Trichotillomania (AEBT-T) treatment package. Defusion is described as a therapeutic context that challenges the literality of language. The purpose of defusion exercises is not to change the client’s thinking from something that is illogical to something that is logical; rather, it is to change the context of language from something that supports inner experiences as literal events to something that looks at inner experiences as something to simply be experienced. One part of defusion is the ability to see that a person has thoughts that are separate from themselves and that thoughts and feelings affect the way the world is experienced. The chapter shows the therapist how to help a client see that their mind does not stop, that it always has something to say.
Oxford Case Histories in Obstetric Medicine
Authors: Frise Charlotte , Bhalsod Krupa , Scott Rebecca , Gibson Harry
Published: January 2023

Obstetric Medicine provides the reader with 55 cases of different clinical presentations in obstetric medicine. Each case is presented with a background to the subject area, a summary of the history, and examination findings, and relevant investigation results. This is followed by several questions on clinically important aspects of the case with answers and detailed discussion, particularly of the differential management options. Each topic is mapped on to both the curriculum for physicians undertaking obstetric medicine, and for obstetric trainees studying for membership exams, the Advance Training Skills Module in maternal medicine, and speciality training in maternal and fetal medicine. Providing an ideal self-assessment tool, this new title is of interest to all doctors working in obstetrics, midwives, physicians who may encounter pregnant women in their clinical practice, and students revising for exams.
Case 4
Authors: Frise Charlotte , Bhalsod Krupa , Scott Rebecca , Gibson Harry
Published: January 2023

A 33-year-old woman in her second pregnancy presented to the maternity assessment unit at 37 weeks of gestation with a 3-day history of itching and a new rash. She initially noticed the rash on the right side of her abdomen. It then spread across her abdomen, to involve both arms and legs, and neck. The rash was very itchy. She had had a cough and coryzal symptoms a week previously, but symptoms had resolved, and she had no temperature or other symptoms at that time. Oral antihistamines had not relieved the itching. She had a history of eczema, but this normally only affected her hands. She has tried her normal emollient, but this did not help.
Case 6
Authors: Frise Charlotte , Bhalsod Krupa , Scott Rebecca , Gibson Harry
Published: January 2023

A 45-year-old woman with no past medical history presented with a painful left thigh, 4 weeks after the birth of her first child. The pain started 3 days prior to presentation on the medial aspect of the thigh, and subsequently radiated down the leg. It was associated with erythema, mild swelling, and pain on palpation. There was no history of trauma, no associated pain elsewhere, and she had never experienced anything similar in the past. Her pregnancy had been uncomplicated, but she had required an emergency caesarean section for a failed induction of labour. She had received 10 days of LMWH as VTE prophylaxis and had taken all the doses as prescribed. She had tried paracetamol with limited effect. She was not on any regular medications and had no significant family history. She had never smoked.
Case 13
Authors: Frise Charlotte , Bhalsod Krupa , Scott Rebecca , Gibson Harry
Published: January 2023

A 39-year-old woman presented at 34 weeks of gestation with a tonic-clonic seizure. She had noticed a headache in the preceding few days. This was her first pregnancy, and her booking blood pressure was 100/70 mmHg and BMI was 23.5 kg/m2. There was no history of previous seizures, head injury, or high blood pressure. She had no past medical history and had never smoked. Her family history included hypertension in both her mother and sister. On examination she was drowsy, hypertension (175/105 mmHg) and had 2+ proteinuria. She had mild epigastric tenderness on abdominal examination and was hyperreflexic with five beats of clonus.
Case 17
Authors: Frise Charlotte , Bhalsod Krupa , Scott Rebecca , Gibson Harry
Published: January 2023

A 32-year-old woman presented to the Emergency Department at 26 weeks of gestation with a vague constellation of worsening symptoms. She had a 4-week history of intractable nausea and was unable to tolerate oral fluids, despite treatment with cyclizine, metoclopramide, and ondansetron. She had also been experiencing intermittent generalized abdominal cramps, associated with loose stool, which was occasionally streaked with blood. She had been feeling increasingly tired, light-headed, and short of breath on minimal exertion. This was her first pregnancy, and she had no past medical history. In addition to the antiemetics, she was taking ferrous sulphate 200 mg on alternate days, as anaemia was identified on her booking bloods. Her father had a history of colonic polyps. She was an ex-smoker (10–15 a day for 12 years) and had drunk 25 units of alcohol per week prior to pregnancy. There was no history of recent overseas travel.
Case 24
Authors: Frise Charlotte , Bhalsod Krupa , Scott Rebecca , Gibson Harry
Published: January 2023

A 32-year-old woman called the maternity advice line when she was 26 weeks pregnant. She was concerned as she worked as a primary school teacher and one of the children in her class had developed a rash which looked like chickenpox. The patient had not had chickenpox as a child and had not been vaccinated. She had been feeling well throughout pregnancy and had no similar symptoms. This was her second pregnancy; her first pregnancy had been uncomplicated, and she had delivered vaginally at term. She was taking pregnancy multivitamins but no regular medication. She was a non-smoker and did not drink alcohol.
Case 27
Authors: Frise Charlotte , Bhalsod Krupa , Scott Rebecca , Gibson Harry
Published: January 2023

A 19-year-old woman in her first pregnancy was seen urgently in the antenatal clinic. She was approximately 12 weeks pregnant. Nine months prior to conception she had been diagnosed with moderate pulmonary arterial hypertension after extensive investigation and assessment. She had been started on a calcium channel blocker. She was able to walk up one flight of stairs without stopping but would be short of breath at the top. She became breathless when walking fast. She was World Health Organization (WHO) functional class II. She did not have any orthopnoea or paroxysmal dyspnoea, and no cough. She reported ankle swelling, particularly at night. She complained of worsening fatigue and dull substernal chest discomfort and occasional light-headedness.
Case 35
Authors: Frise Charlotte , Bhalsod Krupa , Scott Rebecca , Gibson Harry
Published: January 2023

A 32-year-old woman was brought into the Emergency Department at 32 weeks of gestation. She was unwell and described severe left-sided chest pain and shortness of breath. The pain had started quite suddenly about an hour previously. It was severe, worse on inspiration, and on coughing she could feel the pain radiate to her back. She had noticed some mild right leg swelling and discomfort over the preceding two days but had otherwise been well. This was her first pregnancy and it has been uneventful until this point. She had no significant past medical history and was only taking pregnancy vitamins regularly. Her family history was notable for a pulmonary embolism in her mother after a hip replacement. She worked as a secondary school teacher, lived with her husband, and did not smoke.
Case 42
Authors: Frise Charlotte , Bhalsod Krupa , Scott Rebecca , Gibson Harry
Published: January 2023

A 34-year-old woman underwent IVF treatment and became pregnant with DCDA twins. At booking her BP was 117/70 mmHg and her BMI was 28 kg/m2. Her pregnancy had been uncomplicated until the diagnosis of gestational diabetes, diagnosed on oral glucose tolerance test at 28 weeks. She was managing her blood glucose levels by dietary changes alone. She presented to the assessment unit at 34 weeks of gestation feeling generally unwell, with symptoms of nausea, alongside new-onset polyuria and polydipsia. She had no past medical history and was not on any regular medication. She was a non-smoker.
Case 45
Authors: Frise Charlotte , Bhalsod Krupa , Scott Rebecca , Gibson Harry
Published: January 2023

A 32-year-old woman attended the obstetric medicine clinic at 30 weeks of gestation in her first pregnancy. Over the previous 10 weeks, she had been seen 3 times in the Emergency Department with collapse. She reported that her legs simply gave way and she fell to the ground. She did not lose consciousness, she had no headache, chest pain, palpitations, or any other symptoms. Her arms also felt heavy. Her symptoms improved each time after approximately 30 minutes rest. She had been feeling increasingly fatigued during her pregnancy, particularly in the afternoons, and often had to lie down. In the afternoons, her exercise tolerance had reduced so she could only walk for 10 minutes before feeling completely exhausted and having to rest. She had reduced her oral intake as she felt tired when eating.
Case 47
Authors: Frise Charlotte , Bhalsod Krupa , Scott Rebecca , Gibson Harry
Published: January 2023

A 38-year-old woman was found to have low platelets on her booking blood tests in her first pregnancy. This abnormality was confirmed on repeat testing, and she was referred to the specialist clinic for review, where she was seen at 14 weeks of gestation. Her pregnancy had been otherwise uncomplicated. She had no significant past medical history and was taking pregnancy multivitamins. She had never smoked or taken recreational drugs. Examination was normal.
Case 49
Authors: Frise Charlotte , Bhalsod Krupa , Scott Rebecca , Gibson Harry
Published: January 2023

A 41-year-old woman in her first pregnancy was seen in the maternity assessment unit at 34 weeks of gestation. She reports reduced fetal movement for the last 24 hours. She states that she has attended 2 other times for reduced fetal movements in pregnancy, but the CTG has been reassuring each time. She had been visiting her sister for the last 2 days and her normal antenatal care was in a different hospital. She does not have her maternity notes with her. She is HIV positive and has been taking highly active anti-retroviral therapy throughout her pregnancy. She reports having an undetectable viral load. She has no other medical conditions and states her HIV has been well managed since diagnosis. She is also taking pregnancy multivitamins. She has no allergies, smoked 10 cigarettes per day prior to pregnancy, but gave up when she found she was pregnant.
Case 51
Authors: Frise Charlotte , Bhalsod Krupa , Scott Rebecca , Gibson Harry
Published: January 2023

A 30-year-old woman was referred urgently by her GP following a positive pregnancy test. She was originally from Somalia and had previously undergone replacement of her mitral and aortic valves for severe rheumatic heart disease. Following the surgery 4 years previously she had been anticoagulated on warfarin, with a stable INR (target 3.0, range 2.5–3.5) on 10 mg warfarin daily. She had been told that she could not conceive on warfarin but had understood that to mean she would be unable to get pregnant, rather than that she should not become pregnant. There had never been concern about valve function. There was no other past medical history, and she was not on any other regular medication. Her BMI was 35 kg/m2. She did not smoke or drink alcohol.
Case 52
Authors: Frise Charlotte , Bhalsod Krupa , Scott Rebecca , Gibson Harry
Published: January 2023

A 36-year-old woman was seen in a routine antenatal clinic at 28 weeks of gestation in her first pregnancy. She described breathlessness on exertion but not on lying flat, extreme fatigue, falling asleep watching TV or reading in a chair, and she had reduced her driving as she is worried about feeling sleepy. She also mentioned that she is concerned her sleep has been poor for a long time (including prior to pregnancy) but had worsened during the second trimester. She described her husband frequently complaining that she snores heavily, and sometimes was concerned as he noticed her breathing is sometimes erratic, and sometimes there are big pauses in her breathing. She had no chest pain, cough, or wheeze. She had mild swelling of her ankles bilaterally but no pain or swelling in her calves.
How to request a test: A clinician's guide to the interpretation and evaluation of medical tests
Authors: Boyles Tom
Published: January 2023

How to Request a Test: A Clinician’s Guide to the Interpretation and Evaluation of Medical Tests is a comprehensive overview of everything a doctor needs to know before performing a test. It fast-tracks learners to the level of experienced clinicians by providing insight into how they are able to use minimal tests to rapidly arrive at diagnoses. Illustrated throughout with real-life examples from multiple medical and surgical specialties, it begins with a simple definition of a test before moving on to explain the pros and cons of simple terms used to describe diagnostic accuracy, such as sensitivity, specificity, and predictive values. It continues with an introduction to Bayes’ theorem and explains how likelihood ratios are a possible solution to the drawbacks of simple measures of diagnostic accuracy. In light of this, the book evaluates the controversial case of prostate cancer screening with prostate-specific antigen. Drawing on classic papers from the 1970s, the book then introduces basic medical decision theory based on threshold values and explains their practicality in real-world scenarios. The book then turns from an individual to a public health approach, describing different methods of evaluating tests before they are introduced into healthcare systems, including the use of randomized controlled trials to determine their impact on patient outcomes. The example of a novel test for tuberculosis is used to illustrate how this works in practice and the book concludes with a simple four-point checklist for clinicians to consider before requesting a test.
Determining the Accuracy of a Test
Authors: Boyles Tom
Published: January 2023

This chapter describes the elements that must be included in any empirical study of test accuracy. It describes how the target condition must be clearly defined along with the reference standard against which the novel (or index) test will be measured. It explains that not all reference standards are 100% accurate in all circumstances and may be chosen as a compromise between simplicity and accuracy. It explains how case-controlled study designs are cheaper and faster but have limited value compared to prospective cohort studies and that results will be most valid if the population and setting (domain) of the study are the same as that in which the test will be used in practice. The chapter outlines how the output of a diagnostic accuracy study when the index test result is binary is a 2×2 table and when it is continuous it can be viewed as two frequency distributions and that the Standards for Reporting Diagnostic accuracy studies (STARD) guideline should be followed when reporting diagnostic accuracy studies.
Test Accuracy As Likelihood Ratios
Authors: Boyles Tom
Published: January 2023

This chapter introduces readers to the use of Bayes’ theorem as a potential way to address the drawbacks of sensitivity, specificity, and predictive values. It describes the process of updating the probability of a condition based on test results and that the principal statistics (Bayes’ factors) are the likelihood ratios which are calculated from all four squares of a 2×2 table. It explains how the application of Bayes’ theorem to medical testing begins with a calculation of the pre-test probability of a condition using intuition and experience or, where available, a data-driven approach. It continues with the method of combining pre-test probabilities with likelihood ratios to give post-test probabilities, which can be illustrated with a Fagan nomogram but is best performed with a smartphone app. It concludes with a discussion of screening tests which are typically performed at very low pre-test probability when tests with very high diagnostic accuracy are needed.
Evaluation of a Novel Test
Authors: Boyles Tom
Published: January 2023

This chapter draws together the whole book using the example of Xpert MTB/RIF, a novel test for tuberculosis (TB) that has recently been introduced and evaluated. It gives a brief history of TB diagnostics including difficulties encountered following the HIV pandemic then presents a seminal paper from 2010 describing the high diagnostic accuracy of Xpert MTB/RIF. The chapter then explains that appropriate diagnostic research was not carried out but instead researchers carried out diagnostic intervention research which failed to show any impact on patient-relevant outcomes and how, despite this, the World Health Organization has continued with the widespread roll-out of Xpert MTB/RIF. It explains the World Health Organization target product profiles for TB diagnostics and how these are inadequate to determine if a test will improve patient outcomes.
Hospice and Palliative Care
Authors: Higginson Irene J. , Gomes Barbara , Bone Anna E.
Published: January 2023

Hospice and palliative care have always embraced the “whole” person in the context of their family, encompassing physical, psychological, emotional, social, and spiritual aspects of care. Mental disorders and psychological distress are among the most common, overlooked, and troublesome complications of advanced illness, which highlights the important role of psychiatrists and psychologists, social workers, and all variety of psychosocial professionals in the multiprofessional care team. This chapter outlines the contributions of key multiprofessional individuals and groups to hospice and palliative care development over time, including current international initiatives that continue to grow and shape the field. The importance of holistic and systematic assessment of patients with advanced conditions and the development of validated assessment tools to support this are discussed. Barriers that interfere with recognition and treatment of the full range of problems in advanced illness include prognostic uncertainty, challenges in diagnosing mental disorders in the context of serious illness, and stigma surrounding mental disorders. In overcoming some of these barriers, the importance of recognizing the interface between the mind and body in approaches to care is illustrated using the example of breathlessness management among people with advanced disease. The holistic practice of hospice and palliative care provides an exciting opportunity for psychiatrists, psychologists, social workers, and other psychosocial professionals keen to work on the interface of mind and body.
Delirium in the Terminally Ill
Authors: Manschreck Christopher , Alici Yesne , Breitbart William
Published: January 2023

Delirium is one of the most common neuropsychiatric complications in the management of terminally ill patients. Delirium is characterized by an abrupt onset and fluctuating disturbance in arousal, attention, cognition, and perception. Delirium is a serious neuropsychiatric condition that is associated with increased morbidity and mortality, causing distress in patients, family members, and staff. Delirium signals a medical emergency. Emerging from significant physiologic disturbance, usually involving multiple medical etiologies, delirium requires prevention, early identification, and vigorous treatment. Unfortunately, delirium is often underrecognized, misdiagnosed, inappropriately treated, or untreated in the medical setting. Palliative care specialists and others who care for terminally ill patients must be able to diagnose delirium accurately, undertake appropriate assessment of etiologies, and understand the benefits and risks of pharmacologic and nonpharmacologic interventions currently available. This chapter presents a comprehensive overview of the epidemiology, pathophysiology, clinical features, assessment, and management of delirium in the terminally ill.
Medical Assistance in Dying
Authors: Panjwani Aliza A. , Rodin Gary , Li Madeline
Published: January 2023

Medical assistance in dying (MAiD) is increasingly garnering global support, with 24 jurisdictions having legalized one or more forms of MAiD and several more considering legislation. In this chapter, the authors present a historical and global overview of MAiD; characteristics of individuals who pursue it; impacts of MAiD on family, health professionals, and medicine; and key practice challenges of MAiD with case illustrations. The majority of those who pursue MAiD receive palliative care services, and there has been little global evidence of MAiD being disproportionately provided to unwilling or vulnerable populations. The most common reason cited by individuals who receive MAiD is psychological distress, including loss of autonomy, dignity, and ability to participate in valued activities. Patients with significant depressive symptoms or death anxiety are often ambivalent about their MAiD requests. Paramount in ensuring that MAiD is delivered safely and ethically is differentiating the desire for death as an indicator of pathology from that as a rational choice undertaken by an autonomous individual. A common reason for psychiatric referral in MAiD is the determination of capacity. However, palliative psychiatry is also uniquely positioned to conduct psychodiagnostic assessment and deliver psychotherapeutic interventions to relieve existential suffering. Palliative psychiatry should play a significant role in developing frameworks and safeguards in jurisdictions considering expansion of MAiD to controversial areas such as mature minors, for psychiatric disorders, and as advance requests.
Communicating with Patients with Advanced Cancer
Authors: Parker Patricia A. , Epstein Andrew S. , Rosa William E. , Banerjee Smita C.
Published: January 2023

Effective communication between the patients, families, and the healthcare team is essential to providing quality patient care. This is true for patients at any point on the cancer trajectory, but especially important for patients with advanced cancer. This chapter describes many of the key communication needs and challenges of patients with advanced cancer and their caregivers and suggest strategies to communicate effectively about these complex issues. Some of the important communication tasks include discussions of prognosis, advanced care planning and end-of-life goals of care, palliative and supportive care, and hospice. When communicating with advanced cancer patients, it is essential to find ways to maintain hope. The authors also discuss important considerations when communicating with patients with advanced cancer from minoritized groups. Finally, the authors discuss communication strategies and programs that have been developed to communicate optimally with patients with cancer and their families. Enhancing the communication skills of members of the healthcare team is critical to providing patient-centered care for patients with cancer and their families.
Care for the Healthcare Provider
Authors: McFarland Daniel C. , Vachon Mary L. S.
Published: January 2023

Clinicians working with patients at the end of life face many distinct challenges that influence their well-being. Burnout and related conditions like moral distress and compassion fatigue are highly prevalent across medical specialties. However, the disciplines of palliative care and psychiatry have moderate levels of burnout despite mortality salience and significant interpersonal stressors in clinical palliative care. This chapter reviews the issues surrounding burnout and related conditions as they relate to palliative care specifically. It discusses key concepts related to burnout and the work environment as distinguished from other mental health maladies that are also prevalent in clinicians (e.g., depression, risk of suicide, substance use). These conditions have healthy, functional opposites such as compassion satisfaction, moral success, and engagement in work. Resilience is discussed as it relates to adapting, persevering, and coping. Attachment theory and its clinical implications for patients and clinicians is discussed. Last, several forms of burnout interventions are analyzed and presented. While data are limited, organizationally addressed burnout interventions appear to be most efficacious and durable along, with mindfulness-based stress reduction techniques. In general, greater attention is now given to burnout and its related conditions, which stands to significantly help clinicians working with patients at the end of life.
Ethical Issues in Palliative Care
Authors: Esbensen Kari L. , Sulmasy Daniel P.
Published: January 2023

The authors provide a historical-social context and philosophical framework to illuminate some of the major ethical issues crucial to palliative care. They argue that the terminally ill patient’s increased vulnerability, medicine’s moral obligation to serve the four-fold good of the patient, the telos of medicine as providing healing by restoring wholeness even when cure is no longer possible, and the many domains of suffering experienced by the terminally ill all converge to justify intensive comprehensive palliative care (ICPC) as the appropriate response to these realities. They then review some of the many ethical challenges ICPC faces in responding to the needs of the terminally ill, challenges that arise when addressing pain, other symptoms, and suffering; providing spiritual and existential care; telling the truth and conveying “bad news”; assessing decision-making capacity and ensuring informed consent; encouraging advance care planning and supporting surrogate decision-making; determining when to withhold or withdraw life-sustaining treatments; considering the appropriateness of artificial nutrition and hydration; responding to requests for futile or potentially inappropriate treatments; addressing requests for euthanasia or physician assisted suicide; and considering the use of sedating medications at the end of life. They offer arguments to support their views on each of these issues while acknowledging that some of these topics remain deeply controversial.
Cognitive Behavioral Therapy in Palliative Care
Authors: McDarby Meghan , Trevino Kelly , Kozlov Elissa
Published: January 2023

Cognitive behavioral therapy (CBT) examines relationships among cognitions, emotions, and behaviors to help patients address maladaptive patterns of thinking and behaving. Despite its robust evidence base for the treatment of psychopathology, questions remain about the feasibility, acceptability, and efficacy of CBT approaches in palliative care settings. However, meta-analytic evidence indicates that CBT is not only feasible and acceptable to patients with palliative care needs, but also that it is effective in the treatment of psychological distress among patients in palliative care and their care partners (e.g., spouses, adult children). Importantly, CBT can be incorporated into treatment for patients with a wide range of medical diagnoses (e.g., cancer, heart failure, kidney disease) and psychological and somatic concerns (e.g., anhedonia, death anxiety, fatigue, insomnia, and pain). CBT is also recommended by the National Institute of Health Care and Excellence guidelines for individuals nearing end of life who are in need of psychological support. This chapter summarizes the traditional CBT framework and applies this framework to the care of patients in palliative care settings. The authors also briefly describe the evidence base for CBT use in palliative care, enumerate special considerations for practicing CBT with patients receiving palliative care, and offer recommendations about how CBT might be applied across the palliative care trajectory.
Meaning-Centered Psychotherapy
Authors: Applebaum Allison J. , Lichtenthal Wendy G. , Pessin Hayley , Breitbart William
Published: January 2023

Existential distress and suffering are common among patients with advanced cancer. For patients who are facing death, a sense of meaning is clinically and existentially important and central to providing holistic, high-quality end-of-life care. Two decades ago, the authors’ research group at Memorial Sloan Kettering Cancer Center began to understand that a meaning-centered approach to psychosocial care had the potential to alleviate existential distress that plagued many patients with advanced cancer. Based originally on the work of Viktor Frankl and principles of existential psychology and philosophy, the authors developed meaning-centered psychotherapy (MCP) to help patients with advanced cancer sustain or enhance a sense of meaning, peace, and purpose in their lives in the face of the challenges and limitations they commonly face. This chapter provides an overview of MCP and its clinical applications. The authors summarize the growing body of research that has demonstrated the efficacy of MCP in improving meaning, quality of life, and spiritual well-being, and in reducing psychological distress and despair at the end of life among patients with advanced, life-limiting cancers. Adaptations of MCP for other purposes and populations, such as cancer survivors, cancer caregivers, and bereaved family members, are also discussed.
Psychiatry in Multidisciplinary Pediatric Palliative Care
Authors: Kearney Julia A. , Gilman Megan
Published: January 2023

Pediatric palliative care (PPC) is multidisciplinary, child- and family-centered, developmentally informed, holistic care for children, adolescents, and their families facing life-threatening illness. Child and adolescent psychiatrists in PPC contribute valuable skills in the assessment and management of emotional and behavioral symptoms, family dynamics, communication, and interventions. Symptom management with psychotropic medications is appropriate to provide comfort and relief from physical or emotional distress. A developmental understanding of children’s conceptualization of death can assist in providing tailored support for children and their caregivers. Communication with children and adolescents about their own death and dying should be done in conjunction with parent psychoeducation and support in the context of a therapeutic relationship and should be careful, individualized, and child-led. Adolescents and young adults should be increasingly included in goals-of-care discussions, as appropriate. Evidence-based therapeutic interventions and communication tools such as advance care planning guides and therapeutic games are invaluable tools at the bedside in PPC. Expertise in palliative communication is shown to be closely correlated with child quality of life outcomes and parent bereavement outcomes after the death of a child. Family support and bereavement care is in the scope of pediatric palliative care.
Looking beyond a biopsychosocial model of pain
Authors: Sullivan Mark D. , Ballantyne Jane C.
Published: January 2023

This chapter argues that the widely endorsed biopsychosocial (BPS) model is incomplete and was powerless to stop the opioid epidemic. The BPS model addresses a diverse set of psychological and social influences on chronic pain, but it doesn’t question the independence of the “objective biological event” of disease or pain. The BPS model focuses on biological causes of pain and psychosocial modifiers of that experience. Biological factors are allowed to stand on their own as causes of chronic pain, while psychological and social factors are not. Emotion is often conceived as a reaction to the pain sensation rather than a core component of pain. This means that the BPS model does not challenge the separation of mechanical pain from human suffering, including the idea of pain as passive suffering, which has supported the right to pain relief and the use of opioid painkillers.
Selling opioids as targeted painkillers
Authors: Sullivan Mark D. , Ballantyne Jane C.
Published: January 2023

This chapter describes how the discovery of an endogenous opioid system in humans in the mid-1970s radically changed our understanding of opioids. Whereas opioids had long been known as drugs that could produce pain relief or addiction, depending on circumstances, endogenous opioid systems revealed a role for opioids that extended far beyond simple pain relief or addiction. These systems, we now know, are critical in stress responses, and in learning protective actions and behaviors to allow the individual to function in a hostile world and in society. For humans, socialization is critical for survival. One of the greatest harms of opioid drugs, which commandeer endogenous opioid systems, is the attenuation of natural survival behaviors, including socialization. Here we describe how the discovery of an endogenous opioid system opened up a new understanding of pain itself, how the individual has power over pain, and how opioid drugs compromise the individual’s ability to self-manage pain.
From causal to moral models of pain, and the right to pain relief
Authors: Sullivan Mark D. , Ballantyne Jane C.
Published: January 2023

This chapter argues that our mechanical causal theories about pain provide the basis for our moral theories about pain and our policies about opioids, including the right to pain relief. Our modern medical view of pain sees it as a natural event with causes but not reasons. We separate pain (as produced by impersonal mechanisms originating within the body) from suffering (as arising from personal and interpersonal meanings originating between bodies). Patients with pain have done nothing to cause or deserve the pain they experience. This causal passivity and its moral corollary, innocence, are the basis for the claim of a right to pain relief. That is why this right to pain relief is limited to the use of prescribed opioids for the treatment of physical pain, never for the rest of human suffering.
Finding a place for pain in medicine, in policy, and in life
Authors: Sullivan Mark D. , Ballantyne Jane C.
Published: January 2023

This chapter argues that we cannot cure or abolish pain from human life. The utilitarians argued that all pain is bad, and professional pain medicine has argued that pain relief should be among the core universal human rights provided by all societies. We argue that health professionals have misunderstood not only opioids, but also pain itself. We work our way backward through the Western history of pain, gradually unwinding the tight knots of pain problems bequeathed to us: from pain conceived as a medical problem, to pain as a social problem, and finally to pain as an existential or religious problem. The great promise of the biomedical model is that chronic pain can be killed with pills or procedures while leaving the person untouched. This promise is one of the deep roots of our opioid epidemic.
Epilogue: Clinician’s perspective
Authors: Sullivan Mark D. , Ballantyne Jane C.
Published: January 2023

This chapter describes a primary care physician’s experience with treating four returning patients and two new patients with chronic pain. The focus is on the personal challenge posed by these patients. Each patient has a unique set of medical and social problems, but each poses a challenge about continuing, escalating, tapering, discontinuing, or starting long-term opioid therapy. Difficulties in making correct medical and psychiatric diagnoses are reviewed.
Epilogue: Patient’s perspective
Authors: Sullivan Mark D. , Ballantyne Jane C.
Published: January 2023

This chapter reviews the experience of Reggie Winston, a mechanical engineer with chronic low back pain. It begins with his divorce, followed by the onset of his back pain after a fall while backpacking. He gets temporary relief from epidural steroid injections, but soon progresses to a lumbar fusion. This provides partial relief, but after a hard plane landing he is in significant pain again. He is treated with Percocet, then Oxycontin, with an initial good response. He continues drinking alcohol and gradually escalates his dose. After a breakup with a girlfriend, he accidentally overdoses on opioids and alcohol. He enters alcohol and drug rehabilitation, followed by a pain rehabilitation program. He readily takes to the exercise focus, but finds addressing his chronic anger to be more challenging.
Depressive Disorders
Authors: Fujisawa Daisuke , Akechi Tatsuo , Uchitomi Yosuke
Published: January 2023

This chapter covers etiology, assessment, and clinical management of depression, which is a syndrome characterized by depressed mood and/or loss of interest and pleasure, and is common among patients with life-threatening illness. Since the presentation of depression may be masked or mimicked by other physical conditions, routine screening for depression is strongly recommended. This chapter provides a list of screening tools for depression, along with methods of detailed assessment and a list of key differential diagnoses. Psychotherapy and pharmacotherapy, which are the two major treatments of depression, are illustrated. Since the patients’ vulnerability and shortened prognosis may limit some use of antidepressants in palliative care settings, the use of other psychotropics is discussed. Some of the complementary and alternative medicines that have been proven effective for depression are also discussed.
Care of Dependent Children When a Parent Is Dying of Cancer
Authors: Turner Jane , Henry Melissa
Published: January 2023

The impact of parental cancer and death is strongly influenced by the developmental stage of the child. Younger children may be anxious and fearful of abandonment and express distress behaviorally. Adolescents may be particularly vulnerable because of their greater awareness of the impact of parental death and expectations they will assume greater domestic responsibility. The function of the family as a whole, especially high levels of parental emotional distress interfering with daily ability to function or family conflicts, will affect adjustment of children, along with social adversity or preexisting childhood health conditions. Open communication aligned with the developmental stage of the child is the cornerstone of all interventions, along with recognition of distress, assurances of ongoing loving care, and strategies to maximize routine. Health professionals have a role in providing support, education, and encouragement for parents to embark on these conversations, which need to be adapted over time as the parent’s clinical condition changes. Parents will benefit from information about positive steps they can take to mitigate distress and promote longer-term resilience of their children. Childhood bereavement has a lasting emotional impact; however, it does not inevitably lead to disorder. Practical strategies are likely to facilitate coping. Focused professional interventions should be reserved for families and children who are most vulnerable.