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Handbook of Clinical Neurology 2023Main target in palliative care (PC) is burden care of patients and their families, with the aim to reduce suffering through the management of symptoms, rehabilitation,... (Review)
Review
Main target in palliative care (PC) is burden care of patients and their families, with the aim to reduce suffering through the management of symptoms, rehabilitation, psychosocial issues, and spiritual well-being, using a multidisciplinary approach. Multiple sclerosis (MS) is a chronic disease which induces physical and psychosocial symptoms, with a significant impact on the quality of life. As a consequence, despite advances in research in disease-modifying drugs, MS remains a life-limiting disease with symptoms negatively impacting the lives of MS patients and their families. PC has been developed for end-of-life treatment in oncology, being little used in MS. Specific issues in MS, like pain due to spasticity, requires a different approach respect to cancer pain management. Moreover, it is difficult to anticipate life expectancy in people with severe MS, who often need palliative care for a long extended period. PC teams are trained to keep open full and competent lines of communication about symptoms and disease progression, advanced care planning, and end-of-life issues and wishes. Many studies investigated the effects of home-based PC in advanced MS, showing weak evidences about the efficacy of PC versus usual care in MS. However, current evidence does not support or refute the routine use of PC interventions for people with MS.
Topics: Humans; Palliative Care; Quality of Life; Multiple Sclerosis; Pain Management; Death
PubMed: 36599504
DOI: 10.1016/B978-0-12-824535-4.00009-4 -
Handbook of Clinical Neurology 2022Palliative care is increasingly becoming an established part of medical care, providing the holistic assessment and management of the person at the center of... (Review)
Review
Palliative care is increasingly becoming an established part of medical care, providing the holistic assessment and management of the person at the center of care-physical, psychological, social, and spiritual. This had originally been primarily provided for people with terminal cancers but in the last 50 years, this care has extended to caring for people with issues throughout disease progression and for all diagnoses, including neurologic diseases. Palliative care in fact is now included within guidelines and standards for many neurologic diseases. Palliative care may be delivered as an approach provided by all health and social care professionals; by focused care provided within neurology; and through the involvement of specialist palliative care and neuropalliative care for more complex issues. The education of neurologists and palliative care specialists is essential to enable all to be aware of the issues faced by patients and their families and provide adequate support for patients, families, and healthcare professionals. In this way, the quality of life can be maintained as much as possible and patients are able to die with as little distress as possible, with their families and carers supported.
Topics: Humans; Neoplasms; Nervous System Diseases; Neurologists; Palliative Care; Quality of Life
PubMed: 36055714
DOI: 10.1016/B978-0-323-85029-2.00008-7 -
Advances in Neonatal Care : Official... Jun 2020First defined in 2002 by Catlin and Carter, neonatal palliative care (NPC) is a relatively new model of care in neonatal pediatrics, first appearing in the medical... (Review)
Review
BACKGROUND
First defined in 2002 by Catlin and Carter, neonatal palliative care (NPC) is a relatively new model of care in neonatal pediatrics, first appearing in the medical literature in the early 1980s.
PURPOSE
The purpose of this article is to suggest a conceptual definition of NPC that encompasses all the essential concepts as a way of moving NPC forward by having a consistent approach.
METHODS
Following a review of the NPC literature, a thematic analysis as a method for identifying, analyzing, and interpreting patterns of meaning in the definitions ("themes") within the literature was undertaken.
FINDINGS
The major themes identified included philosophies of care, support, culture and spirituality, the team, and clinical management.
IMPLICATIONS FOR RESEARCH
At the heart of NPC is the primacy of maintaining quality of life, while providing ethical and humane care that supports a "good death." The extensive elements presented in this article are considered essential to a comprehensive and conceptual definition of NPC proposed here.
Topics: Attitude to Death; Humans; Infant Care; Infant, Newborn; Medical Futility; Neonatology; Palliative Care; Patient Care Team; Patient Comfort; Quality of Life
PubMed: 32384328
DOI: 10.1097/ANC.0000000000000731 -
Expert Review of Pharmacoeconomics &... Oct 2019: Sick persons need doctors who understand their pathology, know how to treat their problem, and accompany them through their illness. This study aimed to synthesize the... (Review)
Review
: Sick persons need doctors who understand their pathology, know how to treat their problem, and accompany them through their illness. This study aimed to synthesize the state of knowledge regarding the concept of value-based medicine (VBM) through an integrative literature review, and establish how VBM can be applied in palliative care. : An integrative review was conducted with the keywords 'value-based medicine,' 'patient-centered care,' and 'medicina baseada em valor' (Portuguese for VBM) in PubMed and Virtual Health Library, identifying 17,189 articles in total. Of these, 10 articles met the eligibility criteria. VBM combines the highest level of technical-scientific data with patients' values. It is defined as the combination of evidence-based medicine, patient-centered care, and cost-effectiveness. Patients' values are a set of preferences, concerns, and expectations that contribute toward accommodating their needs in the treatment clinic. : Like VBM, palliative care focuses on patients' values and quality of life, respecting natural limits. The early development of a care plan with active participation of the patient in the face of life-threatening diseases should be encouraged and can bring peace and comfort in a person's final moments.
Topics: Cost-Benefit Analysis; Decision Making; Evidence-Based Medicine; Humans; Palliative Care; Patient-Centered Care; Quality of Life
PubMed: 31370715
DOI: 10.1080/14737167.2019.1651645 -
Clinics in Geriatric Medicine May 2020Dementia management is complicated by neuropsychiatric symptoms such that the longitudinal care of a psychiatrist or other mental health provider is often an essential... (Review)
Review
Dementia management is complicated by neuropsychiatric symptoms such that the longitudinal care of a psychiatrist or other mental health provider is often an essential part of patient care and a major source of family support. Given the importance of end-of-life continuity of care, the involvement of psychiatry in palliative and hospice services affords an important opportunity for growth. Common challenges involve sharing prognostic information with patients and families to aid in advance planning, and management of persistent pain and nutritional issues. Future research will yield important new insights and guidelines for care.
Topics: Advance Care Planning; Aged; Dementia; Disease Progression; Family Health; Humans; Palliative Care; Terminal Care
PubMed: 32222305
DOI: 10.1016/j.cger.2019.11.011 -
The Surgical Clinics of North America Oct 2019A common fallacy prevalent in surgical culture is for surgical intervention and palliation to be regarded as mutually exclusive or sequential strategies in the... (Review)
Review
A common fallacy prevalent in surgical culture is for surgical intervention and palliation to be regarded as mutually exclusive or sequential strategies in the trajectory of surgical illness. Modern surgeons play a complex role as both providers and gatekeepers in meeting the palliative needs of their patients. Surgical palliative care is ideally delivered by surgical teams as a component of routine surgical care, and includes management of physical and psychosocial symptoms, basic communication about prognosis and treatment options, and identification of patient goals and values. Specialty palliative care services may be accessed through a through a variety of models.
Topics: Humans; Palliative Care; Patient Care Team; Perioperative Care; Surgeons; Surgical Procedures, Operative
PubMed: 31446911
DOI: 10.1016/j.suc.2019.06.001 -
Handbook of Clinical Neurology 2022Life-limiting and life-threatening neurologic conditions often progress slowly. Patients live with a substantial symptom burden over a long period of time, and there is... (Review)
Review
Life-limiting and life-threatening neurologic conditions often progress slowly. Patients live with a substantial symptom burden over a long period of time, and there is often a high degree of functional and cognitive impairment. Because of this, the most appropriate time to initiate neuropalliative care is often difficult to identify. Further challenges to the incorporation of neuropalliative care include communication barriers, such as profound dysarthria or language impairments, and loss of cognitive function and decision-making capacity that prevent shared decision making and threaten patient autonomy. As a result, earlier initiation of at least some components of palliative care is paramount to ensuring patient-centered care while the patient is still able to communicate effectively and participate as fully as possible in their medical care. For these reasons, neuropalliative care is also distinct from palliative care in oncology, and there is a growing evidence base to guide timely initiation and integration of neuropalliative care. In this chapter, we will focus on when to initiate palliative care in patients with life-limiting, life-threatening, and advanced neurologic conditions. We will address three main questions, which patients with neurologic conditions will benefit from initiation of palliative care, what aspects of neurologic illness are most amenable to neuropalliative care, and when to initiate neuropalliative care?
Topics: Humans; Medical Oncology; Nervous System Diseases; Neurology; Palliative Care
PubMed: 36055710
DOI: 10.1016/B978-0-323-85029-2.00011-7 -
Handbook of Clinical Neurology 2022This chapter describes several features of palliative care that we believe can assist neurologists in caring for patients with serious illness. These features include... (Review)
Review
This chapter describes several features of palliative care that we believe can assist neurologists in caring for patients with serious illness. These features include the importance of recognizing suffering, the central of total pain (including physical, emotional, spiritual, and existential aspects), structural features of palliative care such as the distinction been palliative care and hospice, and the concept of primary and specialty palliative care. Structural features of palliative care such as interdisciplinary teamwork, approaches to self-care, and a perspective on prognostic uncertainty are also considered. Throughout this chapter, the focus is on ways in which neurologists can integrate these approaches in caring for patients and their families.
Topics: Hospice Care; Humans; Neurologists; Pain; Palliative Care
PubMed: 36055722
DOI: 10.1016/B978-0-323-85029-2.00013-0 -
Western Journal of Nursing Research Oct 2019The term was developed to describe and differentiate palliative care that is delivered prior to the end of life. The purpose of this article is to better define and... (Review)
Review
The term was developed to describe and differentiate palliative care that is delivered prior to the end of life. The purpose of this article is to better define and clarify this concept using Rodgers's evolutionary concept analysis method. Attributes of nonhospice palliative care include (a) patient- and family-centered care, (b) holistic care, (c) interdisciplinary team, (d) early intervention, (e) quality of life-enhancing, (f) advanced care planning, (g) any age of the patient, (h) at any stage in illness, (i) care coordination, (j) concurrent curative treatment options, and (k) provided by primary and specialist providers. Nonhospice palliative care antecedents are serious illness, education, and access to services; consequences include benefits for the patient, family, provider, and health care system. Offering a clearly defined concept may allow for changes in health care to improve access to these services.
Topics: Concept Formation; Humans; Palliative Care
PubMed: 31170893
DOI: 10.1177/0193945919853162 -
BMJ Open Mar 2023The aim of this study was to map existing emergency medical services (EMS) and palliative care literature by answering the question, what literature exists concerning... (Review)
Review
OBJECTIVES
The aim of this study was to map existing emergency medical services (EMS) and palliative care literature by answering the question, what literature exists concerning EMS and palliative care? The sub-questions regarding this literature were, (1) what types of literature exist?, (2) what are the key findings? and (3) what knowledge gaps are present?
DESIGN
A scoping review of literature was performed with an a priori search strategy.
DATA SOURCES
MEDLINE via Pubmed, Web of Science, CINAHL, Embase via Scopus, PsycINFO, the University of Cape Town Thesis Repository and Google Scholar were searched.
ELIGIBILITY CRITERIA FOR SELECTING STUDIES
Empirical, English studies involving human populations published between 1 January 2000 and 24 November 2022 concerning EMS and palliative care were included.
DATA EXTRACTION AND SYNTHESIS
Two independent reviewers screened titles, abstracts and full texts for inclusion. Extracted data underwent descriptive content analysis and were reported according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for scoping reviews guidelines.
RESULTS
In total, 10 725 articles were identified. Following title and abstract screening, 10 634 studies were excluded. A further 35 studies were excluded on full-text screening. The remaining 56 articles were included for review. Four predominant domains arose from included studies: (1) EMS' palliative care role, (2) challenges faced by EMS in palliative situations, (3) EMS and palliative care integration benefits and (4) proposed recommendations for EMS and palliative care integration.
CONCLUSION
EMS have a role to play in out-of-hospital palliative care, however, many challenges must be overcome. EMS provider education, collaboration between EMS and palliative systems, creation of EMS palliative care guidelines/protocols, creation of specialised out-of-hospital palliative care teams and further research have been recommended as solutions. Future research should focus on the prioritisation, implementation and effectiveness of these solutions in various contexts.
Topics: Humans; Palliative Care; Emergency Medical Services; Hospice and Palliative Care Nursing
PubMed: 36927584
DOI: 10.1136/bmjopen-2022-071116