bluuebunny/crossref_metadata_2025_split huggingface dataset:
Breathlessness
Authors: Lovell Natasha , Bajwah Sabrina 
Published: June 2024

Abstract
Chronic or refractory breathlessness is common and distressing with few effective treatment options. It is experienced by almost all people living with chronic obstructive pulmonary disease (COPD) as well as people living with other chronic lung diseases, chronic heart failure, and advanced cancer. It is distressing for those experiencing it, often resulting in anxiety, physical inactivity, and a poor quality of life. It also impacts significantly on those who are close, including friends and family, with a considerable care burden. The best current evidence is for non-pharmacological interventions, which should take priority initially alongside optimal management of the underlying disease. However, as diseases progress and the severity of breathlessness increases, participation in non-pharmacological interventions such as pulmonary rehabilitation can become more challenging, often limited by physical deconditioning and fatigue. At this stage pharmacological treatments may be indicated, alongside the initiation of prognostic conversations and advance care planning.
Bowel Obstruction
Authors: Webster Sarah , Rea Emily , Husbands Emma 
Published: June 2024

Abstract
This case provides a summary of the presentation, aetiology, diagnosis, and management of palliative bowel obstruction. We focus on malignant bowel obstruction (MBO), which is the most prevalent cause seen in palliative care, describing the different aetiologies, including mechanical and functional obstruction, which may be partial or complete. We cover key aspects of the history, relating symptoms to the level of obstruction. We describe common examination findings and which investigations should be carried out to confirm the diagnosis. We discuss ‘acceleration’ and ‘neutral bowel’ approaches to the management of MBO, as well as ‘putting the brakes on’. Readers should also consider the role of surgery in management. The patient’s goals and priorities should be central to decision-making.
Mouth Care
Authors: Rowley Grace , Lodge Philip 
Published: June 2024

Abstract
This case explores the common oral conditions that may present in palliative care patients and the physical and psychological impacts that oral discomfort may cause. It discusses the presentation of oral mucositis and the challenges that this brings to patients undergoing cancer treatment. It reviews the guidance for the management of oral mucositis, including the use of photobiomodulation therapy. The presentations and pharmacological management of oral candidiasis are discussed. The common symptom of xerostomia is considered, why it can be such a distressing symptom and approaches to reduce its symptom burden. This case also explores the role of dental care, nutrition, and oral hygiene support as part of a multidisciplinary approach to palliative oral care.
Uncertainty and Prognostication
Authors: Etkind Simon Noah , Stone Paddy 
Published: June 2024

Abstract
Uncertainty is an inevitable part of experience in advanced illness; it is experienced by patients, carers, and health professionals. Uncertainty may relate to illness, care, or treatment and is part of the unpredictable illness trajectories of complex illness and multimorbidity. Unpredictable illness trajectories make prognostication difficult, and clinicians may struggle to provide individualized survival predictions. However, people often report that they find it valuable to have prognostic information. Here we consider the uncertainties associated with advanced illness, and approaches to addressing uncertainty. We discuss prognostication in a palliative care context, including the accuracy of clinical estimates of prognosis and tools to support prognostication.
Coordination and Transfer of Care
Authors: Hill Rosanna , Hurlow Adam 
Published: June 2024

Abstract
This case reviews the case of a woman with advanced oesophageal cancer who has an unplanned hospital admission and, despite initial response to treatment, is recognized to be approaching the final weeks of life. It explores how to recognize someone who may be approaching the end of life (EoL), using both patient history and biological markers. It then explores the transfer of care out of hospital informed by the individual’s goals and priorities, including coordinating care between settings and effective documentation and sharing of agreed care preferences and treatment recommendations. It also reviews the anticipation and management of common symptoms, paying attention to anticipatory prescribing and managing bleeding at the EoL.
What to Expect with a Death at Home
Authors: Oxley Tammy , Malia Catherine 
Published: June 2024

Abstract
‘What to Expect with Death at Home’ examines the process of dying at home and key considerations for patients, relatives, and health professionals. It reviews recent trends in the number of patients dying at home, views on home as a preferred place of death and barriers and facilitators to achieving this. It discusses care and support for patients and relatives; both before and after death and from a range of individuals and services, including healthcare professionals and those working in the third sector. The provision of anticipatory medications is discussed, including recent advances in carer administration of subcutaneous medications in the community. The lived experiences of relatives of patients who have died at home are considered.
Delirium
Authors: Jackson Kitty , Wood Felicity 
Published: June 2024

Abstract
This case examines the prevention, recognition, and management of delirium in a palliative care setting. Delirium is common in palliative care patients and is associated with clinical complications and worse patient outcomes. This case reviews common risk factors for delirium. Non-pharmacological interventions that can be enacted to prevent delirium are explored, and the absence of any medication intervention to prevent delirium is discussed. The case examines the diagnosis of delirium, including the importance of screening because delirium is commonly missed or misdiagnosed. It also explains the psychomotor subtypes of delirium and the relationship between delirium and terminal agitation. The management of delirium covers assessment and treatment of reversible causes as well as non-pharmacological and pharmacological management approaches. The importance of communication with patient and family about delirium is emphasised. These approaches are considered in the context of palliative care and the key concerns distinctive to this patient population are examined.
Pandemics and Disaster Response
Authors: Manuel Athul , Daniel Sunitha 
Published: June 2024

Abstract
Pandemics and natural disasters are part of mass casualty events like earthquakes, major storms, haemorrhagic fever epidemics, or political violence, which comprise suffering in several ways requiring care of different kinds. Principles of palliative care, with the fundamental goal of relief of human suffering, need to be applied during any humanitarian emergency, particularly to those with pre-existing life-threatening illnesses, the severely injured, and those with comorbidities. People living in low- and middle-income countries (LMICs) are more vulnerable to needless suffering due to disasters. An already established palliative care network with strong roots in community is able to support patients and families in providing symptom control and psychosocial care. The trained volunteers who are part of palliative care networks can act as first responders during a humanitarian crisis to help with rescue, relief, and rehabilitation.
A Desire for Hastened Death
Authors: Payne Rebecca , Lund Samantha 
Published: June 2024

Abstract
‘A Desire for Hastened Death’ outlines a case of a patient with advanced cancer seeking to actively end their life by physician-assisted suicide (PAS). It gives a definition for the desire, or wish, to hasten death (DTHD/WTHD), and discusses reasons why a patient may hold this desire (e.g. fear or loss of control). Exclusion of potentially reversible contributing factors such as physical symptoms, or depression are considered. The law on assisting suicide is discussed, along with guidance on what to do if a patient asks for help in hastening their death. Whilst a large proportion of patients in palliative care may have a WTHD, healthcare workers may worry about causing distress if they ask about it.
Wellness after Kidney Transplantation
Authors: Wu Christine M. , Doshi Mona D. 
Published: June 2024

Abstract
There is a difference between being alive and living. Wellness in life is derived from positive relationships with family and friends, spiritual health, engagement in meaningful work, participation in hobbies, and ability to travel and engage with the world. Kidney transplant provides independence from dialysis and improved life expectancy with better quality of life, a term that encompasses the interdependent dimensions of physical, mental/emotional, social, spiritual, vocational, financial, and environmental health. This chapter will address some important aspects of long-term wellness after kidney transplantation including immunization, family planning and reproductive health, cancer screening, and return to work after transplantation. The transplant community can help patients to maximize their quality-of-life following transplantation.
Short-Term and Late Antibody-Mediated Rejection after Kidney Transplantation
Authors: Schinstock Carrie , Crespo Marta 
Published: June 2024

Abstract
Antibody-mediated rejection (ABMR) remains an important cause of renal allograft loss in the current era. A large multicenter observational study of over 5,000 kidney transplant recipients since 2006 showed that 30% of all death-censored allograft losses were associated with ABMR. Our understanding of ABMR has expanded in concert with advances in human leukocyte antigen (HLA) antibody detection techniques and standardization of renal allograft histology interpretation with the Banff classification, yet our treatment approach for late active and chronic ABMR remains limited. This chapter discusses various aspects of ABMR including the clinical presentations of ABMR, the mechanisms of ABMR, and treatment strategies. It also discusses the importance of microvascular inflammation and the histologic features suggestive of ABMR without detectable HLA donor-specific antibody (DSA).
Recurrent and De Novo Diseases after Kidney Transplantation
Authors: Coorey Craig P. , Chadban Steven J. 
Published: June 2024

Abstract
For most patients with end-stage kidney disease (ESKD), kidney transplant (KT) is the treatment of choice. KT provides a replacement kidney and immunosuppression, but in most cases does not ameliorate the underlying cause of kidney failure. As a result, both glomerular and systemic diseases can recur after KT, leading to graft dysfunction and failure with concurrent extrarenal morbidity and possibly death. Although less common, there are diseases that can occur de novo post transplantation that may also damage the kidney allograft.
Simultaneous Pancreas and Kidney Transplantation
Authors: Dunn Ty B. , Molinari Michele 
Published: June 2024

Abstract
End-stage kidney disease (ESKD) is a major health problem in the United States. Diabetes is a major cause of kidney failure. As of early 2023, a total of 1,924 candidates were waiting for a simultaneous pancreas kidney transplant (SPKT). One issue limiting the number of SPKTs is the availability of suitable donor pancreases—the (deceased) donor must be relatively young, lean, and free from major hemodynamic instability or multiorgan failure. Important additional constraints are deficiencies in patient and provider awareness, a national organ transportation system and waning expertise in the procurement and transplant of the pancreas. The current chapter aims to review the most recent data on the incidence, selection, and outcomes of SPKT, with an emphasis on how this transplant option can improve the quantity and quality of life for patients with kidney disease due to insulin dependent diabetes.
Management of Patients with Failing and Failed Kidney Transplant
Authors: Parajuli Sandesh , Gupta Gaurav 
Published: June 2024

Abstract
For patients with advanced chronic kidney disease (CKD) or end-stage kidney disease (ESKD), kidney transplantation remains the best treatment modality. Kidney transplantation as opposed to long-term dialysis offers longer life expectancy with better quality of life and is cost-effective. There is an effort to offer kidney transplantation as the preferred modality to many recipients. In 2019, the President of the United States of America signed an Executive Order, “Advancing American Kidney Health,” intending to facilitate and promote kidney transplantation. In 2021, a total of 24,670 kidneys were transplanted, a record high despite the COVID-19 pandemic. The number of patients with functioning kidney transplants continues to increase. The largest population with functional kidney transplants are patients aged 45–64 years. Many of these patients would eventually have irreversible graft failure requiring repeat transplant or long-term dialysis treatment. This chapter addresses various clinical aspects of failing and failed kidney transplants.
4
Authors: Cohen Lewis 
Published: June 2024

Abstract
This chapter goes into Dan’s personality and his family history. Dan was a fifth-generation Kansan from a privileged background who, like his father, Wint, led an unusual life. The Winter family began as homesteaders in the Kansas Territory in the 1850s. They have continued into present day as community leaders and entrepreneurs. The chapter also explores Dan’s individual history, including the events in his childhood that influenced him to pursue social justice and the defense of civil rights in adulthood. After majoring in journalism at the University of Kansas, Dan became the president and CEO of a group of family-owned community banks located in eastern Kansas, Colorado, and New Mexico, and later he would be appointed Executive Director of the American Civil Liberties Union of Kansas and Western Missouri.
8
Authors: Cohen Lewis 
Published: June 2024

Abstract
In this chapter, the reader learns of Dan’s diagnosis of dementia. People’s behavior around a dementia diagnosis is explored, particularly how many put off seeking a definitive medical evaluation for a year or more. The chapter also explores the symptoms that Dan was experiencing that made him believe that he had a dementia, and it covers his initial formal diagnosis of mild cognitive impairment. A detailed discussion of the current treatments available for Alzheimer’s is also undertaken. The progressive nature of the disease is discussed, as are the dozens of disorders with different etiologies that result in dementia.
13
Authors: Cohen Lewis 
Published: June 2024

Abstract
Dan’s symptoms are worsening. Many of these appear to be inconsequential, but each further erodes Dan’s sense of self. Whether it is the inability to grasp the plot of a book or mistakes that occur during cooking, they are cumulatively eroding his confidence. They have resulted in Dan abandoning his involvement on the board of a local organization that deals with the unhoused. All the while, he has steadfastly avoided turning to John or his other family members regarding the death-hastening plans, partly to shield them from the psychological burden and partly to help them avoid any possible future legal entanglement. The chapter offers readers insight into what day-to-day life looks like for an individual suffering from dementia and for his caregiver. John’s feelings around Dan’s plan to accelerate the end of his life are explored and it becomes clearer as to why he supports the plan.
14
Authors: Cohen Lewis 
Published: June 2024

Abstract
The reader learns more about what is happening in the background while Dan is putting together his plan to overdose. This chapter opens with the line, “Dan’s situation was hardly taking place in a vacuum.” Current events included the COVID pandemic, the murder of George Floyd, the 2020 presidential election, and civil unrest and nightly protests in Portland. The chapter discusses how these larger events colored and influenced Dan’s personal decision-making. The reader learns more about the death of Dan’s father, as well as how Dan imagines his own will death happen and how his loved ones may handle the news.
20
Authors: Cohen Lewis 
Published: June 2024

Abstract
This chapter explores the care provided to dementia patients by neurologists and primary care physicians. It describes how most people’s treatment is in fact managed by their primary care physicians and that very few sufferers are regularly seen by neurologists at outpatient offices or memory clinics. The roles of geriatricians and geriatric psychiatrists are touched upon. The chapter provides further information on memory clinics, which are relatively new and uncommon, and gives the reader insight into how staff at memory clinics might treat Alzheimer’s patients. The growing field of neuropalliative care is also discussed, with insights shared from experts in this field.
22
Authors: Cohen Lewis 
Published: June 2024

Abstract
Family tensions continue to escalate. In this chapter, the reader learns that Dan remains worried about family members initiating guardianship or conservatorship proceedings to halt his plan to hasten his death. The stress and emotional strain contributes to a worsening of Dan’s symptoms and his own feelings around the loss of agency. The reader also learns that Dan decides not to employ lethal medications to hasten his death, and instead he considers voluntarily stopping eating and drinking (VSED). Finally, in an attempt to protect himself from interference, Dan connects with a right-to-die organization that is prepared to act as his legal shield against family intrusions.
24
Authors: Cohen Lewis 
Published: June 2024

Abstract
The reader learns that Dan communicates his new decision regarding voluntarily stopping eating and drinking to his family. Dan then discusses his situation with a hospice coordinator. She clarifies that her staff would be able to step in and offer assistance at the point when he is no longer walking or talking. Dan is asked if he still believes that for people who are dealing with Alzheimer’s, the idea of shortening life via overdose that is not medically supervised should still be considered an option. The discussion from experts on the topic illustrates the widely differing opinions on this matter.
Candida tropicalis—A systematic review to inform the World Health Organization of a fungal priority pathogens list
Authors: Keighley Caitlin , Kim Hannah Yejin , Kidd Sarah , Chen Sharon C-A , Alastruey Ana , Dao Aiken , Bongomin Felix , Chiller Tom , Wahyuningsih Retno , Forastiero Agustina , Al-Nuseirat Adi , Beyer Peter , Gigante Valeria , Beardsley Justin , Sati Hatim , Morrissey C Orla , Alffenaar Jan-Willem 
Published: June 2024

Abstract
In response to the growing global burden of fungal infections with uncertain impact, the World Health Organization (WHO) established an Expert Group to identify priority fungal pathogens and establish the WHO Fungal Priority Pathogens List for future research. This systematic review aimed to evaluate the features and global impact of invasive candidiasis caused by Candida tropicalis. PubMed and Web of Science were searched for studies reporting on criteria of mortality, morbidity (defined as hospitalization and disability), drug resistance, preventability, yearly incidence, diagnostics, treatability, and distribution/emergence from 2011 to 2021. Thirty studies, encompassing 436 patients from 25 countries were included in the analysis. All-cause mortality due to invasive C. tropicalis infections was 55%–60%. Resistance rates to fluconazole, itraconazole, voriconazole and posaconazole up to 40%–80% were observed but C. tropicalis isolates showed low resistance rates to the echinocandins (0%–1%), amphotericin B (0%), and flucytosine (0%–4%). Leukaemia (odds ratio (OR) = 4.77) and chronic lung disease (OR = 2.62) were identified as risk factors for invasive infections. Incidence rates highlight the geographic variability and provide valuable context for understanding the global burden of C. tropicalis infections. C. tropicalis candidiasis is associated with high mortality rates and high rates of resistance to triazoles. To address this emerging threat, concerted efforts are needed to develop novel antifungal agents and therapeutic approaches tailored to C. tropicalis infections. Global surveillance studies could better inform the annual incidence rates, distribution and trends and allow informed evaluation of the global impact of C. tropicalis infections.
Candida auris—a systematic review to inform the world health organization fungal priority pathogens list
Authors: Kim Hannah Yejin , Nguyen Thi Anh , Kidd Sarah , Chambers Joshua , Alastruey-Izquierdo Ana , Shin Jong-Hee , Dao Aiken , Forastiero Agustina , Wahyuningsih Retno , Chakrabarti Arunoloke , Beyer Peter , Gigante Valeria , Beardsley Justin , Sati Hatim , Morrissey C Orla , Alffenaar Jan-Willem 
Published: June 2024

Abstract
The World Health Organization (WHO) in 2022 developed a fungal priority pathogen list. Candida auris was ultimately ranked as a critical priority pathogen. PubMed and Web of Science were used to find studies published from 1 January 2011 to 18 February 2021, reporting on predefined criteria including: mortality, morbidity (i.e., hospitalization and disability), drug resistance, preventability, yearly incidence, and distribution/emergence. Thirty-seven studies were included in the final analysis. The overall and 30-day mortality rates associated with C. auris candidaemia ranged from 29% to 62% and 23% to 67%, respectively. The median length of hospital stay was 46–68 days, ranging up to 140 days. Late-onset complications of C. auris candidaemia included metastatic septic complications. Resistance rates to fluconazole were as high as 87%–100%. Susceptibility to isavuconazole, itraconazole, and posaconazole varied with MIC90 values of 0.06–1.0 mg/l. Resistance rates to voriconazole ranged widely from 28% to 98%. Resistance rates ranged between 8% and 35% for amphotericin B and 0%–8% for echinocandins. Over the last ten years, outbreaks due to C. auris have been reported in in all WHO regions. Given the outbreak potential of C. auris, the emergence and spread of MDR strains, and the challenges associated with its identification, and eradication of its environmental sources in healthcare settings, prevention and control measures based on the identified risk factors should be evaluated for their effectiveness and feasibility. Global surveillance studies could better inform the incidence rates and distribution patterns to evaluate the global burden of C. auris infections.