End of life care and the approach of death.
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426 to 450 of 969Understanding and Addressing the Role of Coping in Palliative Care for Patients With Advanced Cancer.
Advanced cancer, with its considerable physical symptoms and psychosocial burdens, represents an existential threat and major stressor to patients and their caregivers. In response to such stress, patients and their caregivers use a variety of strategies to manage the disease and related symptoms, such as problem-focused, emotion-focused, meaning-focused, and spiritual/religious coping. The use of such coping strategies is associated with multiple outcomes, including quality of life, symptoms of depression and anxiety, illness understanding, and end-of-life care. Accumulating data demonstrate that early palliative care, integrated with oncology care, not only improves these key outcomes but also enhances coping in patients with advanced cancer. In addition, trials of home-based palliative care interventions have shown promise for improving the ways that patients and family caregivers cop…
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Supportive care in cancer-a MASCC perspective.
The term 'supportive care' arose from the medical oncology literature predominantly in the context of managing the toxicities of cancer treatment but embraces all symptom management through treatment and survivorship. Supportive care should be patient-centred with good communication which includes family and carers and applies across the cancer experience from diagnosis, treatment, survivorship to end of life care. Supportive care encompasses physical and functional, psychological, social and spiritual well-being to improve the quality of life. Supportive care must be evidence-based and thus further research is essential. Supportive care requires screening for some symptoms and tools for patients to report their outcomes. Supportive care has to accommodate new physical toxicities, emotional distress as well as financial toxicity. Supportive care is often delivered by medical oncologists …
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Lewis SL (2019)reviewMEDLINE-indexed journal, not yet read by usJournal of hospice and palliative nursing : JHPN : the official journal of the Hospice and Palliative Nurses Association24 citations Emotional Intelligence in Neonatal Intensive Care Unit Nurses: Decreasing Moral Distress in End-of-Life Care and Laying a Foundation for Improved Outcomes: An Integrative Review.
End-of-life care in the neonatal intensive care unit (NICU) is one of the most challenging practices for nurses. Negative emotions associated with moral distress often cause care to be incomplete or nurse disengagement. Emotional intelligence in nurses holds potential to address this issue, while improving patient outcomes. The purpose of this study was to critically appraise the evidence about emotional intelligence in nursing and to explore the relationship between emotional intelligence, moral distress in NICU nurses, end-of-life care, and other priority nurse and patient outcomes. A PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-analyses)-structured integrative review was conducted, and CINAHL, Ovid, PubMed, and other databases were searched. Twelve studies were identified as relevant to this review after exclusion criteria were applied. Evidence supports the effic…
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Palliative Care in Surgery: Defining the Research Priorities.
Objective: To describe the existing science of palliative care in surgery within three priority areas and expose specific gaps within the field.
Background: Given the acute and often life-limiting nature of surgical illness, as well as the potential for treatment to induce further suffering, surgical patients have considerable palliative care needs. Yet these patients are less likely to receive palliative care than their medical counterparts and palliative care consultations often occur when death is imminent, reflecting poor quality end-of-life care.
Methods: The National Institutes of Health and the National Palliative Care Research Center convened researchers from several medical subspecialties to develop a national agenda for palliative care research. The surgeon work group reviewed the existing surgical literature to identify critical knowledge gaps.
Results: To date, evidence to su…
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Hui D, Bruera E (2016)reviewMEDLINE-indexed journal, not yet read by usNature reviews. Clinical oncology268 citations Integrating palliative care into the trajectory of cancer care.
Over the past five decades, palliative care has evolved from serving patients at the end of life into a highly specialized discipline focused on delivering supportive care to patients with life-limiting illnesses throughout the disease trajectory. A growing body of evidence is now available to inform the key domains in the practice of palliative care, including symptom management, psychosocial care, communication, decision-making, and end-of-life care. Findings from multiple studies indicate that integrating palliative care early in the disease trajectory can result in improvements in quality of life, symptom control, patient and caregiver satisfaction, illness understanding, quality of end-of-life care, survival, and costs of care. In this narrative Review, we discuss various strategies to integrate oncology and palliative care by optimizing clinical infrastructures, processes, educatio…
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Flannery L, Ramjan LM, Peters K (2016)reviewMEDLINE-indexed journal, not yet read by usAustralian critical care : official journal of the Confederation of Australian Critical Care Nurses110 citations End-of-life decisions in the Intensive Care Unit (ICU) - Exploring the experiences of ICU nurses and doctors - A critical literature review.
Background: End-of-life decision making in the Intensive Care Unit (ICU), can be emotionally challenging and multifaceted. Doctors and nurses are sometimes placed in a precarious position where they are required to make decisions for patients who may be unable to participate in the decision-making process. There is an increasing frequency of the need for such decisions to be made in ICU, with studies reporting that most ICU deaths are heralded by a decision to withdraw or withhold life-sustaining treatment.
Objectives: The purpose of this paper is to critically review the literature related to end-of-life decision making among ICU doctors and nurses and focuses on three areas: (1) Who is involved in end-of-life decisions in the ICU?; (2) What challenges are encountered by ICU doctors and nurses when making decisions?; and (3) Are these decisions a source of moral distress for ICU doctors…
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A knowledge synthesis of culturally- and spiritually-sensitive end-of-life care: findings from a scoping review.
Background: Multiple factors influence the end-of-life (EoL) care and experience of poor quality services by culturally- and spiritually-diverse groups. Access to EoL services e.g. health and social supports at home or in hospices is difficult for ethnic minorities compared to white European groups. A tool is required to empower patients and families to access culturally-safe care. This review was undertaken by the Canadian Virtual Hospice as a foundation for this tool.
Methods: To explore attitudes, behaviours and patterns to utilization of EoL care by culturally and spiritually diverse groups and identify gaps in EoL care practice and delivery methods, a scoping review and thematic analysis of article content was conducted. Fourteen electronic databases and websites were searched between June-August 2014 to identify English-language peer-reviewed publications and grey literature (inclu…
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When and why should patients with hematologic malignancies see a palliative care specialist?
Palliative care is a multidisciplinary approach to symptom management, psychosocial support, and assistance in treatment decision-making for patients with serious illness and their families. It emphasizes well-being at any point along the disease trajectory, regardless of prognosis. The term "palliative care" is often incorrectly used as a synonym for end-of-life care, or "hospice care". However, palliative care does not require a terminal diagnosis or proximity to death, a misconception that we will address in this article. Multiple randomized clinical trials demonstrate the many benefits of early integration of palliative care for patients with cancer, including reductions in symptom burden, improvements in quality-of-life, mood, and overall survival, as well as improved caregiver outcomes. Thus, early concurrent palliative care integrated with cancer-directed care has emerged as a sta…
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An integrative review of dignity in end-of-life care.
Background: Dying with dignity is regarded as a goal of quality end-of-life care. However, the meaning of dying with dignity is ambiguous, and no comprehensive synthesis of the existing literature has been published.
Aim: To synthesize the meaning of dying with dignity and to identify common aspects of dignity in end-of-life care.
Design: This is an integrative review article. Methodological strategies specific to the integrative review method proposed by Whittemore and Knafl were followed to conduct data analysis. The matrix method was used to summarize characteristics of included articles.
Data sources: Five electronic databases were searched in October 2012, with no date restriction: PubMed, CINAHL, PsycINFO, Academic Search Premier, and Social Sciences Abstracts. Theoretical reports, and both qualitative and quantitative empirical reports, focused on dignity in end-of-life care were …
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Diagnosing dying: an integrative literature review.
Background: To ensure patients and families receive appropriate end-of-life care pathways and guidelines aim to inform clinical decision making. Ensuring appropriate outcomes through the use of these decision aids is dependent on timely use. Diagnosing dying is a complex clinical decision, and most of the available practice checklists relate to cancer. There is a need to review evidence to establish diagnostic indicators that death is imminent on the basis of need rather than a cancer diagnosis.
Aim: To examine the evidence as to how patients are judged by clinicians as being in the final hours or days of life.
Design: Integrative literature review.
Data sources: Five electronic databases (2001-2011): Cochrane Central Register of Controlled Trials (CENTRAL) on The Cochrane Library, MEDLINE, EMBASE, PsycINFO and CINAHL. The search yielded a total of 576 hits, 331 titles and abstracts were…
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Li LB (2013)reviewMEDLINE-indexed journal, not yet read by usCritical care (London, England)25 citations Clinical review: Ethics and end-of-life care for critically ill patients in China.
Critical care medicine in China has made great advances in recent decades. This has led to an unavoidable issue: end-of-life ethics. With advances in medical technology and therapeutics allowing the seemingly limitless maintenance of life, the exact time of death of an individual patient is often determined by the decision to limit life support. How to care for patients at the end of life is not only a medical problem but also a social, ethical, and legal issue. A lot of factors, besides culture, come into play in determining a person's ethical attitudes or behaviors, such as experience, education, religion, individual attributes, and economic considerations. Chinese doctors face ethical problems similar to those of their Western counterparts; however, since Chinese society is different from that of Western countries in cultural traditions, customs, religious beliefs, and ethnic backgrou…
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Palliative care and spiritual care: the crucial role of spiritual care in the care of patients with advanced illness.
Purpose of review: Within the hospice and palliative care movement, patients' religion/spirituality (R/S) has been a core component of care incorporated within international and US palliative care guidelines. However, as the discipline of palliative care has been incorporated into the larger biomedical community, the inclusion of spiritual care has become controversial. This review summarizes key empirical research at the intersection of palliative care and R/S in order to assess its validity as a domain of end-of-life care.
Recent findings: Recent research shows that R/S and spiritual care are important components to the care of patients facing advanced illness. Patients - particularly ethnic minorities - rely upon R/S as an important means to interpret and cope with illness. Studies suggest that R/S plays an important role in coping with disease-related symptoms, improves quality of li…
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The management of cancer pain.
The experience of pain in cancer is widely accepted as a major threat to quality of life, and the relief of pain has emerged as a priority in oncology care. Pain is associated with both the disease as well as treatment, and management is essential from the onset of early disease through long-term survivorship or end-of-life care. Effective relief of pain is contingent upon a comprehensive assessment to identify physical, psychological, social, and spiritual aspects and as a foundation for multidisciplinary interventions. Fortunately, advances in pain treatment and in the field of palliative care have provided effective treatments encompassing pharmacological, cognitive-behavioral, and other approaches. The field of palliative care has emphasized that attention to symptoms such as pain is integral to quality cancer care.
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Ethics and end-of-life care for adults in the intensive care unit.
The intensive care unit (ICU) is where patients are given some of the most technologically advanced life-sustaining treatments, and where difficult decisions are made about the usefulness of such treatments. The substantial regional variability in these ethical decisions is a result of many factors, including religious and cultural beliefs. Because most critically ill patients lack the capacity to make decisions, family and other individuals often act as the surrogate decision makers, and in many regions communication between the clinician and family is central to decision making in the ICU. Elsewhere, involvement of the family is reduced and that of the physicians is increased. End-of-life care is associated with increased burnout and distress among clinicians working in the ICU. Since many deaths in the ICU are preceded by a decision to withhold or withdraw life support, high-quality d…
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Communication difficulties and intellectual disability in end-of-life care.
Around 1-3% of the world's population has intellectual disabilities (Mash and Wolfe, 2004). Communication difficulties are a major obstacle in providing effective palliative care to this group. Problems may arise due to a lack of comprehension and a lack of verbal skills, affecting assessment and the provision of psychosocial support. This paper maps the communication difficulties experienced by people with intellectual disabilities within a palliative care setting, drawing on several research studies carried out by the authors. These include the time-consuming nature of effective communication, and difficulties around breaking bad news. The paper explores the ways in which people with intellectual disabilities may (mis)understand verbal information. Strategies for managing communication difficulties are outlined, including ways to use clear, unambiguous language. The authors conclude th…
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Amyotrophic lateral sclerosis.
Amyotrophic lateral sclerosis (known in the UK as motor neuron disease) is a devastating illness with uncertain pathogenesis. In this Seminar, we review its natural history, clinical features, diagnostic criteria, variant and mimic syndromes, genetic forms, and epidemiology. Several hypotheses about causes of the disorder are discussed, such as excitotoxicity and oxidant stress, and we review past and present putative disease-modifying treatments. Disease-management strategies, from telling the patient about their illness to end-of-life decisions and palliative care, are presented. We review options for control of the main symptoms of amyotrophic lateral sclerosis--including dysphagia, dysarthria, respiratory distress, pain, and psychological disorders--and care in the terminal phase. The need for good psychosocial and spiritual care of patients and families is emphasised. We conclude wi…
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Clark D (2007)reviewMEDLINE-indexed journal, not yet read by usThe Lancet. Oncology185 citations From margins to centre: a review of the history of palliative care in cancer.
Palliative care and hospices have developed rapidly since the late 1960s. The pioneering work of Cicely Saunders was instrumental in drawing attention to the end-of-life care needs of patients with advanced malignant disease. Palliative care began to be defined as a subject of activity in the 1970s and came to be synonymous with the physical, social, psychological, and spiritual support of patients with life-limiting illness, delivered by a multidisciplinary team. Palliative care services have developed in many settings and have often been closely related to oncology. The worldwide need for this type of care remains much greater than the available provision, but there are encouraging signs of recognition by policymakers and influential bodies, and interest in palliative care has never been greater. This paper charts the modern history of such care around the world and concludes on some c…
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A thematic review of the spirituality literature within palliative care.
Research related to spirituality and health has developed from relative obscurity to a thriving field of study over the last 20 years both within palliative care and within health care in general. This paper provides a descriptive review of the literature related to spirituality and health, with a special focus on spirituality within palliative and end-of-life care. CINAHL and MEDLINE were searched under the keywords "spirituality" and "palliative." The review revealed five overarching themes in the general spirituality and health literature: (1) conceptual difficulties related to the term spirituality and proposed solutions; (2) the relationship between spirituality and religion; (3) the effects of spirituality on health; (4) the subjects enrolled in spirituality-related research; and (5) the provision of spiritual care. While the spirituality literature within palliative care shared th…
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Beyond autonomy: diversifying end-of-life decision-making approaches to serve patients and families.
Efforts to improve end-of-life decision-making quality have emphasized the principle of individual autonomy to better ensure that patients receive care consistent with their preferences. This principle has primarily been defined through court decisions during the past 3 decades as a patient's right to refuse medical technologies and avoid life-prolonging treatments. However, autonomy as traditionally defined only serves a small segment of dying patients. Patients might not value autonomy or consider autonomy important but define it differently than decision-making self-determination. Some patients also think in terms of their care goals rather than individual treatment preferences. Patients' functional and cognitive abilities, age, racial and ethnic backgrounds, and desire to avoid burdening loved ones may influence attitudes and definitions regarding autonomy. To improve end-of-life dec…
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Peaceful awareness in patients with advanced cancer.
Background: Previous studies have shown that prognostic awareness may be harmful to mental health yet beneficial for end of life care planning. The effects of prognostic awareness coupled with a sense of inner peace are unknown.
Methods: In the multisite, longitudinal Coping with Cancer Study, 280 patients with advanced cancer were interviewed at baseline. Patients defining themselves as "terminally ill" and/or "at peace" most days were paired with others on sociodemographic, mental health and advance care planning. Primary caregivers of deceased patients were interviewed 6 months postloss and compared on their physical and mental health and their perceptions of patients' end-of-life care and death.
Results: Overall, 17.5% of patients reported being both peaceful and aware. Peacefully aware patients had lower rates of psychological distress and higher rates of advance care planning (e.g.…
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Palliative medicine consultation for preparedness planning in patients receiving left ventricular assist devices as destination therapy.
Objective: To assess the benefit of proactive palliative medicine consultation for delineation of goals of care and quality-of-life preferences before implantation of left ventricular assist devices as destination therapy (DT).
Patients and methods: We retrospectively reviewed the cases of patients who received DT between January 15, 2009, and January 1, 2010.
Results: Of 19 patients identified, 13 (68%) received proactive palliative medicine consultation. Median time of palliative medicine consultation was 1 day before DT implantation (range, 5 days before to 16 days after). Thirteen patients (68%) completed advance directives. The DT implantation team and families reported that preimplantation discussions and goals of care planning made postoperative care more clear and that adverse events were handled more effectively. Currently, palliative medicine involvement in patients receiving D…
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Waitzman R (2026)MEDLINE-indexed journal, not yet read by usMedicine, health care, and philosophy Palliative sedation as a cultural solution in Israel: a philosophical-ethical inquiry into end-of-life practice in a multicultural society.
Palliative sedation (PS) is a morally complex end-of-life practice that sits at the intersection of medicine, law, religion, and culture. While often framed as a purely clinical intervention aimed at alleviating intractable suffering, this article argues that PS functions—particularly in pluralistic societies such as Israel—as a form of ethical mediation and cultural accommodation. Through a philosophical-theoretical inquiry, this paper explores PS not as a universally justified act, but as a “cultural solution”: a pragmatic ethical practice that enables care to proceed amid deep moral disagreement. Drawing on ethical theories—including utilitarianism, deontology, virtue ethics, and care ethics—as well as on the concept of relational autonomy, the article demonstrates the limitations of universalist frameworks in contexts where bioethical norms are fragmented. In Israel, where Orthodox J…
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Listening to the multidisciplinary care team: exploring the pediatric palliative care needs in advanced chronic kidney disease.
Background: Pediatric palliative care (PPC) aims to improve the quality of life for children with life-limiting conditions, such as advanced chronic kidney disease (CKD), from the time of diagnosis. However, PPC is not commonly integrated into routine pediatric nephrology care. This study explores the perspectives and experiences of healthcare providers (HCPs) to better understand the experiences and specific barriers related to PPC integration for children and adolescents with advanced CKD.
Methods: We conducted a qualitative study with 23 HCPs, including nurses, psychologists, social workers, and physicians from seven German pediatric nephrology centers, analyzing semi-structured focus groups and individual interviews using structured content analysis.
Results: Five main categories emerged from the analysis, revealing HCPs' perceptions of CKD as a life-limiting condition, HCPs' moral d…
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Palliative care experience and perceived gaps in training among transplant hepatology fellows: A national survey.
Despite the likely benefits of palliative care (PC) for patients with cirrhosis, physician experiences and perspectives about best practices are variable. We aimed to assess PC experience and gaps in training among transplant hepatology fellows. We conducted a national survey of all transplant hepatology fellows enrolled in accredited fellowship programs during the 2020-2021 academic year. We assessed the frequency of PC provision and comfort with physical and psychological symptom management, psychosocial care, communication skills, advance care planning, and end-of-life care. A total of 45 of 56 (79%) of transplant hepatology fellows responded to the survey; 50% (n = 22) were female. Most trained at centers performing over 100 transplants per year (67%, n = 29) distributed evenly across geographic regions. Most fellows (69%, n = 31) had a PC or hospice care rotation during residency, a…
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Palliative care in the context of immune and targeted therapies: A qualitative study of bereaved carers' experiences in metastatic melanoma.
Background: Immune and targeted therapies continue to transform treatment outcomes for those with metastatic melanoma. However, the role of palliative care within this treatment paradigm is not well understood.
Aim: To explore bereaved carers' experiences of immune and targeted therapy treatment options towards end of life for patients with metastatic melanoma.
Design: An interpretive, qualitative study using a social constructivist framework was utilised. Interviews were recorded, transcribed and analysed using grounded theory methods.
Setting/participants: Participants (n = 20) were bereaved carers of patients who had received some form of immune and/or targeted therapy at one of three Australian metropolitan melanoma treatment centres.
Results: Carers struggled to reconcile the positive discourse around the success of immune and targeted therapies in achieving long-term disease contro…
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