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Journal of Pain and Symptom Management Aug 2014Delirium occurs commonly in settings of palliative care (PC), in which patient vulnerability in the unique context of end-of-life care and delirium-associated impairment... (Review)
Review
CONTEXT
Delirium occurs commonly in settings of palliative care (PC), in which patient vulnerability in the unique context of end-of-life care and delirium-associated impairment of decision-making capacity may together present many ethical challenges.
OBJECTIVES
Based on deliberations at the Studies to Understand Delirium in Palliative Care Settings (SUNDIPS) meeting and an associated literature review, this article discusses ethical issues central to the conduct of research on delirious PC patients.
METHODS
Together with an analysis of the ethical deliberations at the SUNDIPS meeting, we conducted a narrative literature review by key words searching of relevant databases and a subsequent hand search of initially identified articles. We also reviewed statements of relevance to delirium research in major national and international ethics guidelines.
RESULTS
Key issues identified include the inclusion of PC patients in delirium research, capacity determination, and the mandate to respect patient autonomy and ensure maintenance of patient dignity. Proposed solutions include designing informed consent statements that are clear, concise, and free of complex phraseology; use of concise, yet accurate, capacity assessment instruments with a minimally burdensome schedule; and use of PC friendly consent models, such as facilitated, deferred, experienced, advance, and proxy models.
CONCLUSION
Delirium research in PC patients must meet the common standards for such research in any setting. Certain features unique to PC establish a need for extra diligence in meeting these standards and the employment of assessments, consent procedures, and patient-family interactions that are clearly grounded on the tenets of PC.
Topics: Biomedical Research; Culture; Delirium; Humans; Informed Consent; Internationality; Palliative Care; Vulnerable Populations
PubMed: 24388124
DOI: 10.1016/j.jpainsymman.2013.07.017 -
Social Science & Medicine (1982) Jul 2022The diffusion of palliative care has been rapid, yet uncertainty remains regarding palliative care's "active ingredients." The National Consensus Project Guidelines for...
The diffusion of palliative care has been rapid, yet uncertainty remains regarding palliative care's "active ingredients." The National Consensus Project Guidelines for Quality Palliative Care identified eight domains of palliative care. Despite these identified domains, when pressed to describe the specific maneuvers used in clinical encounters, palliative care providers acknowledge that "it's complex." The field of systems has been used to explain complexity across many different types of systems. Specifically, engineering systems develop a representation of a system that helps manage complexity to help humans better understand the system. Our goal was to develop a system model of what palliative care providers do such that the elements of the model can be described concretely and sequentially, aggregated to describe the high-level domains currently described by palliative care, and connected to the complexity described by providers and the literature. Our study design combined methodological elements from both qualitative research and systems engineering modeling. The model drew on participant observation and debriefing semi-structured interviews with interdisciplinary palliative care team members by a systems engineer. The setting was an interdisciplinary palliative care service in a US rural academic medical center. In the developed system model, we identified 59 functions provided to patients, families, non-palliative care provider(s), and palliative care provider(s). The high-level functions related to measurement, decision-making, and treatment address up to 8 states of an individual, including an overall holistic state, physical state, psychological state, spiritual state, cultural state, personal environment state, and clinical environment state. In contrast to previously described expert consensus domain-based descriptions of palliative care, this model more directly connects palliative care provider functions to emergent behaviors that may explain system-level mechanisms of action for palliative care. Thus, a systems modeling approach provides insights into the challenges surrounding the recurring question of what is in the palliative care "syringe."
Topics: Humans; Interdisciplinary Studies; Palliative Care; Qualitative Research; Rural Population; Syringes
PubMed: 35691210
DOI: 10.1016/j.socscimed.2022.115069 -
The National Medical Journal of India 2019
Topics: Aged; Clinical Decision-Making; Humans; India; Middle Aged; Palliative Care; Public Health; Terminal Care
PubMed: 32129303
DOI: 10.4103/0970-258X.278684 -
Neurology Jul 2018Neuropalliative care is an emerging subspecialty in neurology and palliative care. On April 26, 2017, we convened a Neuropalliative Care Summit with national and... (Review)
Review
Neuropalliative care is an emerging subspecialty in neurology and palliative care. On April 26, 2017, we convened a Neuropalliative Care Summit with national and international experts in the field to develop a clinical, educational, and research agenda to move the field forward. Clinical priorities included the need to develop and implement effective models to integrate palliative care into neurology and to develop and implement informative quality measures to evaluate and compare palliative approaches. Educational priorities included the need to improve the messaging of palliative care and to create standards for palliative care education for neurologists and neurology education for palliative specialists. Research priorities included the need to improve the evidence base across the entire research spectrum from early-stage interventional research to implementation science. Highest priority areas include focusing on outcomes important to patients and families, developing serious conversation triggers, and developing novel approaches to patient and family engagement, including improvements to decision quality. As we continue to make remarkable advances in the prevention, diagnosis, and treatment of neurologic illness, neurologists will face an increasing need to guide and support patients and families through complex choices involving immense uncertainty and intensely important outcomes of mind and body. This article outlines opportunities to improve the quality of care for all patients with neurologic illness and their families through a broad range of clinical, educational, and investigative efforts that include complex symptom management, communication skills, and models of care.
Topics: Congresses as Topic; Humans; Nervous System Diseases; Neurologists; Palliative Care
PubMed: 29950434
DOI: 10.1212/WNL.0000000000005916 -
Indian Journal of Medical Ethics 2017Death is inevitable, but that does not mean it can be planned or imposed. It is an ethical imperative that we attend to the unbearable pain and suffering of patients...
Death is inevitable, but that does not mean it can be planned or imposed. It is an ethical imperative that we attend to the unbearable pain and suffering of patients with incurable and terminal illnesses. This is where palliative care plays a vital role. Palliative care has been growing faster in the world of medicine since its emergence as a specialty in the last decade. Palliative care helps to reduce physical pain while affirming the aspect of human suffering and dying as a normal process. The goal of palliative care is to improve the quality of life both of the patient and the family. Palliative care resonates with the healing ministry of Christianity that affirms the sanctity and dignity of human life from the moment of conception to natural death. Christianity is convinced that patients at the very end of their lives, with all their ailments and agonies, are still people who have been created in the image and likeness of God. The human person is always precious, even when marked by age and sickness. This is one of the basic convictions that motivate Christians to take care of the sick and the dying. Palliative care is a great opportunity for Christians to manifest God's unfailing love for the terminally ill and the dying.
Topics: Attitude to Death; Christianity; Humans; India; Palliative Care; Quality of Life; Terminal Care; Terminally Ill
PubMed: 28501792
DOI: 10.20529/IJME.2017.054 -
Frontiers in Public Health 2023Public health palliative care views communities as an integral part of care delivery at the end of life. This community-provider partnership approach has the potential...
Public health palliative care interventions that enable communities to support people who are dying and their carers: a scoping review of studies that assess person-centered outcomes.
BACKGROUND
Public health palliative care views communities as an integral part of care delivery at the end of life. This community-provider partnership approach has the potential to improve end-of-life care for people who are dying and their carers.
OBJECTIVE
To identify and appraise the current literature related to public health interventions that enable communities to support people who are dying and their carers.
METHODS
A scoping review was conducted, applying Arksey and O'Malley's methods. Data was extracted and synthesized using narrative techniques, and results are reported using PRISMA guidelines.
RESULTS
The search yielded 2,902 results. Eighteen met inclusion criteria and were included in the analysis. Interventions were categorized according to their target population: people with life-limiting illness (ex. facilitated social interaction, helplines and guided discussions about death and dying); carers (ex. social support mapping, psychoeducation, and community resource identification and facilitation); or dyads (ex. reminiscence activities, practical and emotional support from volunteers, online modules to bolster coping mechanisms). Public health palliative care approaches were delivered by key community stakeholders such as community health workers, volunteers, peer mentors, and pre-established support groups. Despite reported challenges in identifying appropriate tools to measure effectiveness, studies report improvement in quality of life, loneliness, social support, stress and self-efficacy.
CONCLUSION
We found that community-engaged palliative care interventions can lead to appreciable changes in various outcomes, though it was difficult to determine in which contexts this approach works best because of the dearth of contextual information reported. Based on the varied design and implementation strategies, it is clear that no one method for enhancing end of life care will benefit all communities and it is crucial to engage community members at all stages of the design and implementation process. Future research should be grounded in appropriate theory, describe contextual differences in these communities, and should specifically examine how demographics, resource availability, and social capital might impact the design, implementation, and results of public health palliative care interventions.
Topics: Humans; Palliative Care; Caregivers; Public Health; Quality of Life; Terminal Care
PubMed: 37564426
DOI: 10.3389/fpubh.2023.1180571 -
BMC Palliative Care Nov 2017Ninety-eight percent of children needing palliative care live in low- and middle-income countries (LMICs), and almost half of them live in Africa. In contrast to the... (Review)
Review
BACKGROUND
Ninety-eight percent of children needing palliative care live in low- and middle-income countries (LMICs), and almost half of them live in Africa. In contrast to the abundance of data on populations in high income countries, the current data on populations in LMICs is woefully inadequate. This study aims to identify and summarize the published literature on the need, accessibility, quality, and models for palliative care for children in LMICs.
METHODS
A scoping review was performed following the method of Arksey and O'Malley. Systematic searches were conducted on PubMed and Google Scholar using the main keywords, 'children AND palliative care OR terminal care OR hospice OR end of life AND developing countries OR LMICs.' Additional publications were obtained by handsearching. Papers were only included if they reported on the need, accessibility, quality, and models for palliative care for children in LMICs.
RESULTS
Fifteen papers met the inclusion criteria for review. Of these, 10 assessed need, seven examined availability and/or accessibility, one assessed quality, and one examined the models. We found an urgent need for palliative care, particularly in the training for health workers and improving poor availability and/or accessibility to palliative care in terms of factors such as medication and bereavement support. The best practice models demonstrated feasibility and sustainability through cooperation with governments and community organizations. The quality of pain management and emotional support was lower in LMICs compared to HICs.
CONCLUSION
Although we found limited evidence in this review, we identified common challenges such as the need for further training for health workers and greater availability of opioid analgesics. While efforts to change the current systems and laws applying to children in LMICs are important, we should also tackle underlying factors including the need to raise awareness about palliative care in public health and improve the accuracy of data collection.
Topics: Developing Countries; Health Services Needs and Demand; Humans; Palliative Care; Poverty
PubMed: 29178866
DOI: 10.1186/s12904-017-0242-8 -
Palliative Medicine Jan 2022
Topics: Hospice and Palliative Care Nursing; Humans; Palliative Care; Palliative Medicine
PubMed: 34965752
DOI: 10.1177/02692163211069566 -
Journal of Pain and Symptom Management Dec 2017Advance care planning (ACP) is defined as a person-centered, ongoing process of communication that facilitates patients' understanding, reflection, and discussion of... (Review)
Review
CONTEXT
Advance care planning (ACP) is defined as a person-centered, ongoing process of communication that facilitates patients' understanding, reflection, and discussion of goals, values, and preferences for future care. There is evidence for the general palliative care population that ACP increases compliance with patients' end-of-life preferences and improves quality of care near the end of life.
OBJECTIVES
To gain insight into what is known about the use and effects of ACP in palliative care for people with intellectual disabilities (IDs).
METHODS
Four databases were searched systematically: PubMed, PsycINFO, Embase, and CINAHL. A stepwise procedure was used to identify relevant studies based on the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Statement. The review included empirical quantitative, qualitative, and mixed methods studies concerning people with ID who receive palliative care or who died non-acutely, and describing ACP. Methodological quality was graded using a critical appraisal tool.
RESULTS
A total of 14 studies were included. Most studies examined the perspective of professionals and/or relatives. None of the studies focused on the perspective of patients with ID. The studies concerned different elements of ACP, mainly decision-making and organizational policies. No effect studies were found. Obstructing factors were difficulties in recognizing palliative needs and uncertainties among relatives and professionals about their roles and tasks in ACP. Conducive factors were good working relationships between professionals and relatives.
CONCLUSION
There are some indications that ACP could be useful for people with ID, but more knowledge is needed about whether and how ACP should be used.
Topics: Advance Care Planning; Clinical Decision-Making; Humans; Intellectual Disability; Palliative Care
PubMed: 28797850
DOI: 10.1016/j.jpainsymman.2017.04.016 -
Annals of Palliative Medicine Oct 2018The need for paediatric palliative care (PPC) globally is great yet there is limited evidence of the quality or outcomes of the care provided. The lack of an outcome... (Review)
Review
BACKGROUND
The need for paediatric palliative care (PPC) globally is great yet there is limited evidence of the quality or outcomes of the care provided. The lack of an outcome measure for PPC has been consistently cited as one reason for the lack of robust evidence in the field. Thus recommendations have been made for the development of locally relevant, validated tools to measure outcomes for children.
METHODS
This paper reviews relevant outcomes and quality measures in PPC, the current state of science on outcome measurement for children and young people (CYP) with life-limiting and life-threatening conditions and the development of the African Children's Palliative Outcome Scale (C-POS). Lessons learnt from the past are presented before looking ahead at the need for future developments in outcome measures in PPC. A narrative review was undertaken and authors have drawn upon reflective insights from their collective experiences.
RESULTS
Outcomes can be measured in a variety of ways, and due to the multi-dimensional nature of PPC, outcomes can be complex and hard to measure. Whilst there are a variety of outcome measures for use in adult palliative care, a similar range of tools does not exist in PPC. Literature reviews have confirmed the absence of a multi-dimensional PPC outcome measurement tool. Following on from their success in developing an outcome scale for adults in Africa, the African Palliative Care Association (APCA) have developed a multi-dimensional outcome tool for PPC-the African C-POS. Tool development and validation followed the COSMIN guidance. The draft C-POS consists of 12 questions, 8 in Section A for the child, and 4 in Section B for the parents/carers. The tool has been developed across eight African countries and is the first specifically designed, multi-dimensional outcome measure for PPC. Lessons have been learnt in the development of outcome scales in palliative care, including those specifically for PPC such as: undertaking research in PPC; the definition of PPC; if you ask a child what their concerns are they will tell you; do you use child and or proxy report? do you have different tools for different ages? what methods of scoring should be used? is it an outcome tool, an assessment tool or both? the length of the outcome measure; the length of time it takes to develop; and, it won't be perfect. Whilst progress has occurred through the development of the C-POS there is still a long way to go in the development of outcome measures for PPC. Future developments include: finalization and publication of the African C-POS; utilization of the C-POS in clinical practice, research and audit; collation and review of data sets; and the development of C-POS in different settings.
CONCLUSIONS
The measurement of outcomes in PPC is an imperative. Whilst there are challenges in developing outcome tools and utilizing them in practice, these should not prevent us from advancing the field. The development of the first outcome measure for PPC the African C-POS is a key milestone in the ongoing development and utilization of outcome measures for PPC.
Topics: Child; Child Health Services; Child, Hospitalized; Hospice and Palliative Care Nursing; Humans; Outcome Assessment, Health Care; Palliative Care; Uganda
PubMed: 30180720
DOI: 10.21037/apm.2018.04.02