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Amyotrophic lateral sclerosis (ALS) is a devastating terminal neurodegenerative disease with a highly predictable clinical course such that palliative care should begin at or soon after diagnosis. The outcome is certain in most cases. The only medication approved for treatment in the United States, riluzole, extends life by about 2 months. Virtually all skeletal muscles eventually are affected. Multiple problems require a multidisciplinary approach including aggressive symptomatic management, rehabilitation to maintain motor function, nutritional and respiratory support, augmentative communication devices, and psychological support for both patients and families because family members so often play a central role in management and care. Social, bioethical, and financial issues as well as advance directives should be addressed long before enteral feeding or assistive ventilatory support might be considered. Goals of care should be assessed on an ongoing basis. Presenting the unusual case of a patient with ALS who is also a prominent neurologist specializing in ALS, we enumerate issues in management and palliative care applicable to ALS but also to other fatal, progressive neurologic diseases such as Huntington's chorea and late-stage Parkinson disease. [ABSTRACT FROM AUTHOR]

Fatigue is the most common chronic symptom associated with cancer and other chronic progressive diseases. The assessment and treatment of fatigue at or near the end of life can be complex. Some of the challenges include its subjective nature, with great variability in its source, how it is expressed, and how it is perceived, requiring treatment to be based on patient report of frequency and severity; its multidimensional character; and the limited understanding of its pathophysiology. Using the case of an 82-year-old retired nurse with fatigue that could be explained by a number of concurrent conditions, including anemia, weight loss, depression and isolation, dyspnea, deconditioning, and medications, the authors illustrate the clinical approach to assess and treat fatigue at the end of life. [ABSTRACT FROM AUTHOR]

Race and ethnicity are commonly reported variables in biomedical research, but how they were determined is often not described and the rationale for analyzing them is often not provided. JAMA improved the reporting of these factors by implementing a policy and procedure. However, still lacking are careful consideration of what is actually being measured when race/ethnicity is described, consistent terminology, hypothesis-driven justification for analyzing race/ethnicity, and a consistent and generalizable measurement of socioeconomic status. Furthermore, some studies continue to use race/ethnicity as a proxy for genetics. Research into appropriate measures of race/ethnicity and socioeconomic factors, as well as education of researchers regarding issues of race/ethnicity, is necessary to clarify the meaning of race/ethnicity in the biomedical literature. [ABSTRACT FROM AUTHOR]

When caring for children who become suddenly and catastrophically ill, clinicians must simultaneously attend to a complex and rapidly evolving medical situation, as well as to the equally challenging demands of establishing compassionate relationships with family members and communicating well with colleagues. An 18-month-old toddler was brought to the hospital with severe head injury after being struck by a car. Over a period of hours, her condition evolved from prognostic uncertainty to the diagnosis of brain death and considerations of organ donation. Against this medical backdrop, the clinicians successfully established a trusting relationship with family members by careful attention to their emotional, informational, and care needs as they absorbed the devastating prognosis, took in the results of the brain death examination, and considered the option of organ donation. This case illustrates the importance of interdisciplinary communication, the vital role of social workers and other psychosocial providers with expertise in working with families, and the critical significance of mutual care and support for the clinicians who accompany families through these tragic life events. [ABSTRACT FROM AUTHOR]

Chronic liver disease results in more than 1 million physician visits and more than 300,000 hospitalizations per year in the United States. More than 27,000 patients annually progress to end-stage liver disease (ESLD), liver failure, or death. Patients with ESLD experience such complications as encephalopathy, malnutrition, muscle wasting, ascites, esophagogastric variceal hemorrhage, spontaneous bacterial peritonitis, fatigue, and depression. Despite significant improvements in palliation, patients' quality of life diminishes and their disease will often inexorably progress. Liver transplantation, a valid treatment option, increases life and reduces many symptoms. With the current shortage of organs, up to 10% to 15% of these patients die without receiving an organ. Many patients also are not candidates for transplantation due to comorbid illness. In addition, some patients receive a transplant but succumb to complications of the transplant itself. Such patients and families face the conundrum of a potentially treatable yet often fatal illness. Through the case of a 55-year-old woman with a life-long history of hepatitis B virus infection who is awaiting transplant, we discuss the transplant eligibility process and the struggle with maintaining hope for a cure in the face a life-threatening illness. In all of these circumstances, the health care team must combine elements of palliative care with life-sustaining therapy to maximize the patient's quality and quantity of life. [ABSTRACT FROM AUTHOR]

Despite skilled palliative care, some dying patients experience distressing symptoms that cannot be adequately relieved. A patient with metastatic breast cancer, receiving high doses of opioids administered to relieve pain, developed myoclonus. After other approaches proved ineffective, palliative sedation was an option of last resort. The doctrine of double effect, the traditional justification for palliative sedation, permits physicians to provide high doses of opioids and sedatives to relieve suffering, provided that the intention is not to cause the patient's death and that certain other conditions are met. Such high doses are permissible even if the risk of hastening death is foreseen. Because intention plays a key role in this doctrine, clinicians must understand and document which actions are consistent with an intention to relieve symptoms rather than to hasten death. The patient or family should agree with plans for palliative sedation. The attending physician needs to explain to them, as well as to the medical and nursing staff, the details of care and the justification for palliative sedation. Because cases involving palliative sedation are emotionally stressful, the patient, family, and health care workers can all benefit from talking about the complex medical, ethical, and emotional issues they raise. [ABSTRACT FROM AUTHOR]

Providing care to actively dying patients presents unique challenges for the clinician. Patients in their final days require careful symptom management. Families need support and coaching as death approaches. Care does not end with the death of the patient but continues through death pronouncement, family notification of the death, discussion of autopsy, and immediate bereavement support. Skills in these and related areas are discussed in the context of one man's death, as illuminated by comments made after death by his daughter and his physician. This case also highlights the often differing perspectives of families and clinicians as they work to deal with a patient's death. A goal of mastering the palliative skills necessary to competently care for an actively dying patient is to enable a patient to die peacefully and relatively free of discomfort. Achieving such competency should also help to relieve clinician stress attendant to caring for dying patients. [ABSTRACT FROM AUTHOR]

Physicians often assume that conflict is undesirable and destructive, yet conflict handled well can be productive, and the clarity that results can lead to clearer decision making and greater family, patient, and clinician satisfaction. We review the course of Mrs B, an 84-year-old woman with advanced dementia and an advance directive stating no artificial hydration or nutrition. Over the course of her illness, her family and physicians had conflicting opinions about the use of short-term tube feeding and intravenous hydration in her care. We describe the conflicts that arose between her physicians and family and a typology of conflicts common in care of patients who are seriously ill (family vs team, team member vs team member). Drawing from the business, psychology, and mediation literature, we describe useful communication tools and common pitfalls. We outline a step-wise approach that physicians can use to deal with conflicts and the use of treatment trials as a strategy to address conflicts about the use of life-sustaining medical interventions. [ABSTRACT FROM AUTHOR]

Approximately 25% of children with cancer die of their disease. Early in the course of a patient's illness, it is often impossible to determine whether the disease will be cured with cancer-directed treatment. When potentially curative therapy is no longer an option, the patient, family, and oncology team face enormous medical, psychological, and spiritual challenges. Optimal palliative care requires willingness on the part of the physician and caregiver team to engage the patient and family in discussions of their hopes and fears and to provide solace and support for emotional and physical pain. Using the comments of a child in the terminal phase of acute leukemia, his mother, and his physician, we describe opportunities and important lessons often revealed only when families and their caregivers face the end of a child's life. A broad-minded assessment of the patient's and family's physical, emotional, and spiritual needs and clarification of realistic goals and hopes not only improves the clinical care that the patient receives but also contributes to the sense of satisfaction and meaning that the physician can gain from the experience of caring for children at the end of life. [ABSTRACT FROM AUTHOR]

In the United States, more than 2 million children and adolescents (3.4%) younger than 18 years have experienced the death of a parent. When death can be anticipated, as with a terminal illness, and even when the death is sudden, as in the September 11, 2001, attacks on the World Trade Center and Pentagon, physicians and other health care professionals have an opportunity to ameliorate the impact of the loss. Developmental factors shape adolescents' reactions and responses to the death of a parent. Recent research in childhood and adolescent bereavement shows how health professionals can support the adolescent's coping strategies and prepare the family to facilitate an adolescent's mastery of adaptive tasks posed by the terminal phase of the parent's illness, the death, and its aftermath. Robert, a bereaved 14-year-old, illustrates some of these adaptive challenges. [ABSTRACT FROM AUTHOR]

Studies of dying patients have shown that about half would like the option of physician-assisted suicide (PAS) to be available for possible future use. Those percentages decrease significantly with each step patients take toward action. Studies show that although about 10% of patients seriously consider PAS, only 1% of dying patients specifically request it, and 1 in 10 of those patients actually receive and take a lethal prescription. However, most patients' desires for PAS diminish as their underlying concerns are identified and addressed directly. To help identify concerns motivating a patient's request for PAS, physicians should talk with patients about their expectations and fears, options for end-of-life care, goals, family concerns and burdens, suffering or physical symptoms, sense of meaning and quality of life, and symptoms of depression. A patient with advanced amyotrophic lateral sclerosis (ALS) who requested PAS illustrates how a hasty response may adversely affect patient care and the health care team. Although physicians should remain mindful of their personal, moral, and legal concerns, these concerns should not override their willingness to explore what motivates a patient to make this request. When this approach is taken, suffering can be optimally alleviated and, in almost all cases, the patient's wishes can be met without PAS. [ABSTRACT FROM AUTHOR]

The basic tenets of palliative care may be summarized as the goal of helping patients to die with dignity. The term "dignity" provides an overarching framework that may guide the physician, patient, and family in defining the objectives and therapeutic considerations fundamental to end-of-life care. Dignity-conserving care is care that may conserve or bolster the dignity of dying patients. Using segments of interviews with a patient with advanced lung cancer, his wife, and his palliative care physician, this article illustrates and explores various aspects of dignity-conserving care and the model on which it is based. Dignity-conserving care offers an approach that clinicians can use to explicitly target the maintenance of dignity as a therapeutic objective and as a principle of bedside care for patients nearing death. [ABSTRACT FROM AUTHOR]

Culture fundamentally shapes how individuals make meaning out of illness, suffering, and dying. With increasing diversity in the United States, encounters between patients and physicians of different backgrounds are becoming more common. Thus the risk for cross-cultural misunderstandings surrounding care at the end of life is also increasing. Studies have shown cultural differences in attitudes toward truth telling, life-prolonging technology, and decision-making styles at the end of life. Using 2 case studies of patients, one of an African American couple in the southern United States and the other of a Chinese-American family in Hawaii, we outline some of the major issues involved in cross-cultural care and indicate how the patient, family, and clinician can navigate among differing cultural beliefs, values, and practices. Skilled use of cross-cultural understanding and communication techniques increases the likelihood that both the process and outcomes of care are satisfactory for all involved. [ABSTRACT FROM AUTHOR]

Despite the frequency with which physicians encounter bereaved patients, medical training offers little guidance in the provision of bereavement ("after") care. Physicians are often uncertain of how to distinguish between normal and pathological grief reactions in their bereaved patients, and how to manage their health care. Bereavement is associated with declines in health, inappropriate health service use, and increased risk of death. Identifying and intervening on behalf of bereaved patients could help address those increased risks. We examine the experience of a woman widowed for 2 years to illustrate distinctions between symptoms and outcomes of uncomplicated and complicated grief, recommend approaches to physician interactions with bereaved patients, and offer guidelines for professional intervention in aftercare. [ABSTRACT FROM AUTHOR]

Patients with life-threatening illnesses face great psychological challenges and frequently experience emotional distress. Yet, the end of life also offers opportunities for personal growth and the deepening of relationships. When physical symptoms and suffering are controlled, it is easier to address patients' central concerns-about their families, about their own psychological integrity, and about finding meaning in their lives. Optimal end-of-life care requires a willingness to engage with the patient and family in addressing these distinct domains. In addition to supporting growth of patients and their caregivers, physicians need to recognize the impact of psychiatric disorders such as depression, anxiety, and delirium at the end of life and develop skills in diagnosing and treating these syndromes. Comments of a patient with pancreatic cancer, his son, and his physician help illuminate the potential opportunities presented when coping with life-threatening illness. Enhanced understanding of the common psychological concerns of patients with serious illness can improve not only the clinical care of the patient, but also the physician's sense of satisfaction and meaning in caring for the dying. [ABSTRACT FROM AUTHOR]

Objective: To review evaluation and treatment of patients with ventricular arrhythmias, based on recent studies, with an emphasis on randomized controlled trials.Data Sources: MEDLINE search of English-language publications of ventricular arrhythmias and their references from 1966 through April 27, 1998. References to articles were also scanned to broaden the search.Study Selection: Randomized controlled trials and all large nonrandomized trials of arrhythmias and arrhythmia therapy were reviewed. In addition, studies that led to changes in approach to patients with arrhythmias were reviewed.Data Extraction: We reviewed articles jointly for pertinent studies and information.Data Synthesis: The goals of treatment of the patient with ventricular arrhythmias are to suppress symptoms and prevent a fatal event. The steps in providing such therapy include defining the cardiac anatomy, assessing arrhythmia risk through noninvasive or invasive testing, and prescribing treatment based on these results. Patients may be separated into high- and low-risk groups to help identify appropriate treatment. While low-risk groups may benefit from reassurance or medications such as beta-blockers or verapamil, high-risk groups have been more difficult to treat. Recent randomized trials of implantable cardioverter defibrillators for ventricular arrhythmias suggest that they may provide better protection for high-risk patients than do antiarrhythmic medications.Conclusions: Treatment and understanding of risk from ventricular arrhythmias have advanced substantially in recent years. Classifying patients as being at high or low risk for fatal arrhythmias allows the physician to identify appropriate treatments for the high-risk patient without exposing the low-risk patient to unnecessary treatment-related risks. [ABSTRACT FROM AUTHOR]

Competing Interests: MAW is a Trustee of the World Association of Medical Editors (WAME). TB is an employee of the BMJ and reports support for attending meetings and travel from her employer the BMJ and from the American Institute of Physics Publishing for attendance at Board meetings. SO reports grants from the International Science Council Regional Office for Asia Pacific for the Advancing Science in Southeast Asia Conference and is Founding President of the Southeast Asian Network for Open Science. JT reports no competing interests. The views expressed in this Comment do not necessarily reflect the views of WAME.

[This corrects the article DOI: 10.11613/BM.2017.030.]., Competing Interests: Potential conflict of interest: Dr Ferris is the immediate past president of the World Association of Medical Editors (WAME) and Dr Winker is the current secretary (and a past president). WAME is a non-profit global voluntary association of editors of peer-reviewed medical journals.

Competing Interests: Potential conflict of interest: None declared.

Predatory journals, or journals that charge an article processing charge (APC) to authors, yet do not have the hallmarks of legitimate scholarly journals such as peer review and editing, Editorial Boards, editorial offices, and other editorial standards, pose a number of new ethical issues in journal publishing. This paper discusses ethical issues around predatory journals and publishing in them. These issues include misrepresentation; lack of editorial and publishing standards and practices; academic deception; research and funding wasted; lack of archived content; and undermining confidence in research literature. It is important that the scholarly community, including authors, institutions, editors, and publishers, support the legitimate scholarly research enterprise, and avoid supporting predatory journals by not publishing in them, serving as their editors or on the Editorial Boards, or permitting faculty to knowingly publish in them without consequences., Competing Interests: Potential conflict of interest: None declared.