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Seminars in Hematology Sep 2023Patients with hematologic malignancies often experience fatigue, lack of vitality, and energy, and high psychological distress. High levels of unmet care needs of... (Review)
Review
Patients with hematologic malignancies often experience fatigue, lack of vitality, and energy, and high psychological distress. High levels of unmet care needs of patients with hematologic malignancies in Asia were identified. This review provides an overview of current evidence on the experiences and palliative care needs of patients with hematologic malignancies and their families and the barriers and challenges of integrating palliative care into hematology care in Asia. Patients with hematologic malignancies who received palliative care could benefit from less aggressive end-of-life treatments. However, the uncertain and variable nature of the prognosis and illness trajectories of hematologic malignancies increase the difficulties of integrating palliative care into hematologic care. Patients and their families are often referred to palliative care services late, which leaves a short window for palliative care teams to provide holistic needs assessment and person-centered care for those who need it. In addition, cultural differences in medical decision-making patterns and complex social norms and interactions among patients, families, and healthcare staff make it even more challenging to initiate palliative care conversations in Asia. Future research should focus on the development and evaluation of culturally appropriate palliative care for patients with hematologic malignancies and their family caregivers in Asia, given that the low rate of service intake and poor public awareness of the important role of palliative care in disease trajectories were reported. The socio-cultural context surrounding individuals should be taken into consideration to ensure the provision of person-centered care for this group of patients. Digital health could be one of the possible solutions forward to address local needs and challenges.
Topics: Humans; Palliative Care; Caregivers; Hematologic Neoplasms; Prognosis; Asia
PubMed: 37517948
DOI: 10.1053/j.seminhematol.2023.07.002 -
PloS One 2023To understand the knowledge and awareness of palliative care in the Italian-speaking Swiss general population, describing main misconceptions or false beliefs and their...
OBJECTIVE
To understand the knowledge and awareness of palliative care in the Italian-speaking Swiss general population, describing main misconceptions or false beliefs and their relationship with attitudes towards palliative care.
METHODS
Cross-sectional representative population survey (N = 313).
RESULTS
We observed a high awareness of «palliative care,» although it is mainly associated with pain management and the very last days of life. While false beliefs are relatively rare, there is low awareness of goals, targets, and services offered by palliative care. Overall the Italian-speaking Swiss population has a good predisposition towards palliative care, but negative attitudes are more common among those who lack knowledge. More than one-third of respondents are interested in receiving more information about palliative care, especially from their healthcare providers or through dedicated information points.
CONCLUSION AND PRACTICE IMPLICATIONS
Health communication interventions to promote palliative care are needed because there is still significant unclarity about the goals of palliative care, which negatively affects its acceptance. This study instructs on how to intervene specifically in the Italian-speaking part of Switzerland, including what to communicate and how. Further, our findings can inspire similar studies in other Swiss regions or countries that can optimize recognition, knowledge, and understanding and contribute to filling gaps in populations' health service demand and utilization.
Topics: Humans; Palliative Care; Cross-Sectional Studies; Switzerland; Surveys and Questionnaires; Health Personnel; Health Knowledge, Attitudes, Practice
PubMed: 38015954
DOI: 10.1371/journal.pone.0294807 -
Annals of Palliative Medicine Mar 2024The indication "existential suffering (ES)" for palliative sedation therapy is included in most frameworks for palliative sedation and has been controversially discussed... (Review)
Review
BACKGROUND AND OBJECTIVE
The indication "existential suffering (ES)" for palliative sedation therapy is included in most frameworks for palliative sedation and has been controversially discussed for decades. The appellative character of ES demands rapid relief and sedation often appears to be the best or only solution. ES is still poorly understood and so often neglected by health care professionals due to a lack of consensus regarding assessment, definition and treatment in the international medical literature. Based on a selective review of the literature on ES we propose a different view on the underlying processes of ES and the resulting consequences on medical treatment.
METHODS
A narrative review was performed after PubMed search using key terms related to ES and sedation, covering the period from 1950 to April 2023, additionally a selective search in specialist literature on Existential Analysis. Reverse and forward snowballing followed. The language of analyzed publications was restricted to English and German.
KEY CONTENT AND FINDINGS
ES is a multidimensional experience that tends to turn into despair and ultimately into a wish to die due to perceived hopelessness and meaninglessness. Pharmacological treatment or sedation do not meet the holistic needs of existential sufferers. The risk of harmful effects by continuous deep sedation seems to be significantly increased for existentially suffering patients. Professional caregivers are burdened by the appellative character of ES, limited treatment options and perceived empathic distress. Without a holistic understanding of the human condition in palliative care, ES cannot be fundamentally alleviated, and existential sufferers have no opportunity to transform and thus mitigate their condition. The recognition of underlying causes of suffering-moods is facilitated by the comprehensive approach of Existential Analysis.
CONCLUSIONS
The presented concept of Existential Analysis and the triad of ES are useful instruments for health care professionals to recognize and support underlying moods of existentially suffering patients. Further studies are required. Comprehensive training for professional caregivers on ES is essential to enable them to reflect on their own existential concerns and finiteness as well as those of patients. Continuous deep sedation for ES must remain the exception, equivalent to a last resort option.
Topics: Humans; Terminal Care; Stress, Psychological; Hypnotics and Sedatives; Palliative Care; Existentialism
PubMed: 38462938
DOI: 10.21037/apm-23-474 -
Journal of Palliative Medicine Aug 2023To describe the delivery of palliative care by primary providers (PP) and specialist providers (SP) to hospitalized patients with COVID-19. PP and SP completed...
To describe the delivery of palliative care by primary providers (PP) and specialist providers (SP) to hospitalized patients with COVID-19. PP and SP completed interviews about their experiences providing palliative care. Results were analyzed using thematic analysis. Twenty-one physicians (11 SP, 10 PP) were interviewed. Six thematic categories emerged. Care provision: PP and SP described their support of care discussions, symptom management, managing end of life, and care withdrawal. Patients provided care: PP described patients at end of life, with comfort-focused goals; SP included patients seeking life-prolonging treatments. Approach to symptom management: SP described comfort, and PP discomfort in providing opioids with survival-focused goals. Goals of care: SP felt these conversations were code status-focused. Supporting family: both groups indicated difficulties engaging families due to visitor restrictions; SP also outlined challenges in managing family grief and need to advocate for family at the bedside. Care coordination: internist PP and SP described difficulties supporting those leaving the hospital. PP and SP may have a different approach to care, which may affect consistency and quality of care.
Topics: Humans; Palliative Care; Terminal Care; COVID-19; Qualitative Research; Death
PubMed: 37103488
DOI: 10.1089/jpm.2022.0560 -
The American Journal of Hospice &... Sep 2023Explore the existing literature on the experience and needs of palliative nurses facing job burnout. (Review)
Review
AIM
Explore the existing literature on the experience and needs of palliative nurses facing job burnout.
BACKGROUND
On a global scale, with the increase of aging, the number of people in need of palliative care has increased significantly, which has a huge impact on the professional pressure of palliative nurses. Existing literature focuses on examining palliative care from the perspective of patients, but palliative nurses also face the threats to physical and mental health caused by job burnout.
EVALUATION
A systematic literature search has been carried out in the following databases as of October 2021:PubMed, EMBASE, CINAHL, Web of Science, and Scopus. The Cochrane Library and Joanna Briggs Institute Library were also searched to confirm if there are any available systematic reviews on the subject. Manually searched the reference list of included papers.
KEY ISSUES
Seventeen studies were included in this review. Five key issues in the palliative care nurse's experience: (1) psychological harm, (2) physical symptoms, (3) negative emotions, (4) Burnout caused by communication barriers, and (5) Lack of experience. Two key issues in the needs of palliative care nurses: (1) social support, and (2) training and education.
CONCLUSION
The pressure of facing death for a long time and controlling the symptoms of patients has a very important impact on the mental and physical health of palliative nurses. Nursing staff have needed to be satisfied, and it is essential to provide support and help relieve the pressure on palliative nurses.
Topics: Humans; Hospice Care; Palliative Care; Burnout, Professional; Nursing Staff; Nurses
PubMed: 36400563
DOI: 10.1177/10499091221141063 -
BMJ Supportive & Palliative Care Dec 2023Decision-making in palliative care usually involves both patients and family caregivers. However, how concordance and discordance in decision-making manifest and...
BACKGROUND
Decision-making in palliative care usually involves both patients and family caregivers. However, how concordance and discordance in decision-making manifest and function between patients and family caregivers in palliative care is not well understood.
OBJECTIVES
To identify key factors and/or processes which underpin concordance and/or discordance between patients and family caregivers with respect to their preferences for and decisions about palliative care; and ascertain how patients and family caregivers manage discordance in decision-making in palliative care.
METHODS
A systematic review and narrative synthesis of original studies published in full between January 2000 and June 2021 was conducted using the following databases: Embase; Medline; CINAHL; AMED; Web of Science; PsycINFO; PsycARTICLES; and Social Sciences Full Text.
RESULTS
After full-text review, 39 studies were included in the synthesis. Studies focused primarily on end-of-life care and on patient and family caregiver preferences for patient care. We found that discordance between patients and family caregivers in palliative care can manifest in relational conflict and can result from a lack of awareness of and communication about each other's preferences for care. Patients' advancing illness and impending death together with open dialogue about future care including advance care planning can foster consensus between patients and family caregivers.
CONCLUSIONS
Patients and family caregivers in palliative care can accommodate each other's preferences for care. Further research is needed to fully understand how patients and family caregivers move towards consensus in the context of advancing illness.
Topics: Humans; Palliative Care; Caregivers; Decision Making; Terminal Care; Hospice Care
PubMed: 35318213
DOI: 10.1136/bmjspcare-2022-003525 -
BMC Medical Education Jun 2024The extreme vulnerability experienced by patients in palliative care may result in significant distress. These patients require appropriate care while not pathologizing...
BACKGROUND
The extreme vulnerability experienced by patients in palliative care may result in significant distress. These patients require appropriate care while not pathologizing their natural distress. Given the challenges of caring for people experiencing significant distress, it is important to understand what professionals in training may feel when caring for patients in palliative care. Therefore, the aim of this study was to explore how professionals in training feel when confronted with the distress of patients undergoing palliative care.
METHODS
A qualitative study employing interpretative phenomenological analysis was conducted. In 2022, 11 physicians in training were interviewed about their experiences with distressed patients due to palliative care. The interviews were conducted via video conference. The students participated in the national palliative care cross-training and were in their final year of residency training.
RESULTS
The interviews revealed the following five themes: feelings of powerlessness, duty to act, difficulty in building a relationship, feeling insecure about oneself, and creating a space for listening and relating. All participants felt powerless in front of their patient's distress. Numerous defense mechanisms were identified that made the relationship with the patient difficult. Four participants described being able to create a space for listening and relating to their patients.
CONCLUSIONS
A minority of students could establish a quality relationship with their distressed patients. Two concepts, interprofessional education and the patient-centered approach, were identified and could be developed in training.
Topics: Humans; Palliative Care; Qualitative Research; Female; Male; Adult; Physician-Patient Relations; Students, Medical; Stress, Psychological; Internship and Residency; Physicians; Attitude of Health Personnel; Interviews as Topic
PubMed: 38926746
DOI: 10.1186/s12909-024-05668-9 -
Clinical Medicine (London, England) Mar 2024Palliative care (PC) defined as 'an approach improving the quality of life of patients and their families facing problems associated with life-limiting illness, through... (Review)
Review
Palliative care (PC) defined as 'an approach improving the quality of life of patients and their families facing problems associated with life-limiting illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual' aims to enhance the improve the remaining time that patients have, emphasising choice for patients and families. Patients with neurological disease such as Parkinson's (PD) and motor neurone disease (MND) benefit from PC earlier in disease with increasing emphasis over time. Understanding and communicating uncertain trajectories, honest prognostic communication when patients are ready and careful symptom control has been shown to enhance quality of life in patients and caregivers, giving greater autonomy to these patients when supported in decision-making by a palliative approach. Although obstacles to palliative care are frequent, there are strategies which can help overcome them.
Topics: Humans; Palliative Care; Quality of Life; Motor Neuron Disease
PubMed: 38570095
DOI: 10.1016/j.clinme.2024.100038 -
British Journal of Community Nursing Dec 2023
Topics: Humans; Hospice and Palliative Care Nursing; Palliative Care
PubMed: 38032718
DOI: 10.12968/bjcn.2023.28.12.585 -
Annals of Palliative Medicine Mar 2024The value of specialist palliative care (SPC) is multi-faceted. Patients, families, healthcare providers, health systems and payors all benefit in different ways when...
The value of specialist palliative care (SPC) is multi-faceted. Patients, families, healthcare providers, health systems and payors all benefit in different ways when SPC is included in the care of those with serious illness; they all have a shared interest in the availability and success of SPC. We propose a new value equation for SPC: SPC services must employ optimal design and standardized delivery of SPC to ensure that the payment model, care model, and needs of the patients are all aligned; and suitable payment models are necessary to provide stable, sustainable resources for the interdisciplinary palliative care teams; when these conditions are met, the cascade of beneficial outcomes of SPC can be produced reliably. We propose a set of 10 design and delivery principles describing these inputs and outcomes, applicable to SPC in all settings-hospital, clinic, and home. Amidst shifts in health policy and financing, the SPC field in the US continues to evolve with new innovations, additional evidence, and a clearer vision of what is valuable. An enduring component of the value equation of SPC continues to be the moderation of the total cost of care for payors. This articulation of the value equation for SPC is based on evidence and experience of palliative care providers and payors in the US, but the framework and principles are likely useful to guide and evaluate SPC in other countries as well.
Topics: Humans; Palliative Care; Health Personnel; Hospitals; Ambulatory Care Facilities
PubMed: 38462935
DOI: 10.21037/apm-23-307