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Journal of Pain and Symptom Management May 2023Pediatric palliative care (PPC) programs vary widely in structure, staffing, funding, and patient census, resulting in inconsistency in service provision. Improving the...
Pediatric palliative care (PPC) programs vary widely in structure, staffing, funding, and patient census, resulting in inconsistency in service provision. Improving the quality of palliative care for children living with serious illness and their families requires measuring care quality, ensuring that quality measurement is embedded into day-to-day clinical practice, and aligning quality measurement with healthcare policy priorities. Yet, numerous challenges exist in measuring PPC quality. This paper provides an overview of PPC quality measurement, including challenges, current initiatives, and future opportunities. While important strides toward addressing quality measurement challenges in PPC have been made, including ongoing quality measurement initiatives like the Cambia Metrics Project, the PPC What Matters Most study, and collaborative learning networks, more work remains. Providing high-quality PPC to all children and families will require a multi-pronged approach. In this paper, we suggest several strategies for advancing high-quality PPC, which includes 1) considering how and by whom success is defined, 2) evaluating, adapting, and developing PPC measures, including those that address care disparities within PPC for historically marginalized and excluded communities, 3) improving the infrastructure with which to routinely and prospectively measure, monitor, and report clinical and administrative quality measures, 4) increasing endorsement of PPC quality measures by prominent quality organizations to facilitate accountability and possible reimbursement, and 5) integrating PPC-specific quality measures into the administrative, funding, and policy landscape of pediatric healthcare.
Topics: Child; Humans; Palliative Care; Hospice and Palliative Care Nursing; Quality of Health Care; Health Policy
PubMed: 36736860
DOI: 10.1016/j.jpainsymman.2023.01.021 -
CMAJ : Canadian Medical Association... Oct 2020
Topics: COVID-19; Decision Making, Shared; Health Care Rationing; Health Equity; Humans; Palliative Care; Pandemics; Patient Care Planning; Surge Capacity; Terminal Care; Withholding Treatment
PubMed: 33077529
DOI: 10.1503/cmaj.200465-f -
Annals of Palliative Medicine Sep 2023The compassionate communities (CC) movement is an emergent health promotion approach to palliative care that views illness, dying, death, and loss as universal...
BACKGROUND
The compassionate communities (CC) movement is an emergent health promotion approach to palliative care that views illness, dying, death, and loss as universal experiences, and challenges the notion that disease precludes one from health care attention and interest. It seeks to normalise these phenomena and reorientate care to communities by activating naturally occurring networks and mobilising community resources. A surge of interventions aligned with the ethos of CC has been observed over the last decade. This scoping review seeks to synthesise what is currently known about the design, efficacy, and impact of CC interventions.
METHODS
Cochrane, PubMed, Scopus, and Web of Science were systematically searched. Hand searching was performed on three key journals, reference lists and citation lists of included articles, and relevant review articles. Two levels of analysis were conducted. First, a numerical presentation of the characteristics of CC interventions. Second, a thematically orientated narrative analysis of intervention efficacy.
RESULTS
A total of 1,882 records were screened; 62 papers were included. Most were implemented by palliative care organisations in Europe, North America, and Australia. Included studies were mapped against Clark et al.'s taxonomy of end-of-life interventions: educational (n=17); service (n=20); clinical (n=3); cultural (n=4); and multi-dimensional (n=18) interventions are discussed. While preliminary findings are positive, claims of efficacy are limited due to methodological paucity in the field.
CONCLUSIONS
We argue that the field would benefit from more transparent and theoretically driven CC interventions in order to explicate the mechanism(s) for successful intervention implementation.
Topics: Humans; Palliative Care; Australia; Europe
PubMed: 37475658
DOI: 10.21037/apm-22-867 -
BMC Palliative Care May 2024In order to mitigate the distress associated with life limiting conditions it is essential for all health professionals not just palliative care specialists to identify... (Review)
Review
BACKGROUND
In order to mitigate the distress associated with life limiting conditions it is essential for all health professionals not just palliative care specialists to identify people with deteriorating health and unmet palliative care needs and to plan care. The SPICT™ tool was designed to assist with this.
AIM
The aim was to examine the impact of the SPICT™ on advance care planning conversations and the extent of its use in advance care planning for adults with chronic life-limiting illness.
METHODS
In this scoping review records published between 2010 and 2024 reporting the use of the SPICT™, were included unless the study aim was to evaluate the tool for prognostication purposes. Databases searched were EBSCO Medline, PubMed, EBSCO CINAHL, APA Psych Info, ProQuest One Theses and Dissertations Global.
RESULTS
From the search results 26 records were reviewed, including two systematic review, two theses and 22 primary research studies. Much of the research was derived from primary care settings. There was evidence that the SPICT™ assists conversations about advance care planning specifically discussion and documentation of advance care directives, resuscitation plans and preferred place of death. The SPICT™ is available in at least eight languages (many versions have been validated) and used in many countries.
CONCLUSIONS
Use of the SPICT™ appears to assist advance care planning. It has yet to be widely used in acute care settings and has had limited use in countries beyond Europe. There is a need for further research to validate the tool in different languages.
Topics: Humans; Palliative Care; Advance Care Planning; Terminal Care
PubMed: 38750464
DOI: 10.1186/s12904-024-01445-z -
Current Oncology (Toronto, Ont.) Oct 2022Palliative radiotherapy (PRT) is known to be effective in relieving cancer related symptoms. However, many studies and clinical practice show several barriers hindering... (Review)
Review
Palliative radiotherapy (PRT) is known to be effective in relieving cancer related symptoms. However, many studies and clinical practice show several barriers hindering its use and worsening the quality of patient support during PRT. Various solutions were proposed to overcome these barriers: training on PRT for supportive and palliative care specialists and training on palliative care for radiation oncologists, and introduction of pathways and organizational models specifically dedicated to PRT. Evidence on innovative organizational models and mutual training experiences is few and sparse. Therefore, the aim of this literature review is to present a quick summary of the information available on improving the PRT quality through training, new pathways, and innovative organizational models. The majority of studies on the integration of PRT with other palliative and supportive therapies present low levels of evidence being mostly retrospective analyses. However, it should be emphasized that all reports uniformly showed advantages coming from the integration of PRT with supportive therapies. To actively participate in the integration of PRT and palliative care, providing comprehensive support to the needs of patients with advanced cancer, radiation oncologists should not only plan PRT but also: (i) assess and manage symptoms and stress, (ii) rapidly refer patients to specialists in management of more complex symptoms, and (iii) participate in multidisciplinary palliative care teams. To this end, improved education in palliative care both in residency schools and during professional life through continuous medical education is clearly needed. In particular, effective training is needed for radiotherapy residents to enable them to provide patients with comprehensive palliative care. Therefore, formal teaching of adequate duration, interactive teaching methods, attendance in palliative care services, and education in advanced palliative care should be planned in post-graduated schools of radiotherapy.
Topics: Humans; Palliative Care; Retrospective Studies; Radiation Oncology; Neoplasms; Patient Care Team
PubMed: 36290904
DOI: 10.3390/curroncol29100627 -
Journal of Hospice and Palliative... Aug 2022Palliative care should be integrated into routine disease management for all patients with serious illness, regardless of settings or prognosis. The purposes of this... (Review)
Review
Palliative care should be integrated into routine disease management for all patients with serious illness, regardless of settings or prognosis. The purposes of this integrative review were to identify the features of randomized controlled trials for adult patients with heart failure and to provide basic references for the development of future trials. Using Whittemore and Knafl's integrative literature review method, comprehensive searches of the PubMed, Cochrane Library, CINAHL, EMBASE, and Korean databases were conducted, integrating keywords about heart failure and palliative care interventions. Quality appraisal was assessed using Cochrane risk-of-bias tools. In total, there were 6 trials providing palliative care interventions integrating team-based approaches between palliative care specialists and nonpalliative clinicians, such as a cardiologist, cardiac nurse, and advanced practice nurse across inpatient and outpatient settings. The different types of interventions included home visits, symptom management via phone calls or referral to a specialist team, and the establishment of treatment planning. Patient-reported outcome measures included positive effects of palliative interventions on symptom burden and quality of life. Given that most of the selected studies were conducted in Western countries, palliative care should be culturally tailored to assist heart failure patients worldwide.
Topics: Adult; Heart Failure; Hospice and Palliative Care Nursing; Humans; Palliative Care; Quality of Life
PubMed: 35358113
DOI: 10.1097/NJH.0000000000000869 -
Annals of Palliative Medicine May 2024Kidney transplantation is the best renal replacement therapy for patients with end stage kidney disease. It provides longer patient survival and better quality of life... (Review)
Review
Kidney transplantation is the best renal replacement therapy for patients with end stage kidney disease. It provides longer patient survival and better quality of life than dialysis. The clinical course after kidney transplantation could be complex and variable. Patients may develop various complications or even kidney graft failure. Symptom burden related to uraemia in patients with graft failure, and the side-effects of immunosuppression, cause psychological distress and adversely affect the quality of life of patients. Treatment decisions in patients with graft failure can be challenging to patients and their caregivers. Renal palliative care is an emerging field, but its adoption remains relatively low among kidney transplant recipients with progressive graft failure. In this context, timely consideration and referral for palliative care can improve symptom burden, reduce stress in patients and their caregivers, and facilitate treatment goal setting and advanced care planning. Common barriers to bring palliative care to suitable patients include: (I) misconception in patients, caregivers and healthcare providers that palliative care means abandonment of life sustaining treatment; (II) over-optimistic prognostic assessment and over-aggressive management approach; (III) insufficient awareness and training in palliative care of healthcare professionals; (IV) inadequate access to and insufficient resources in palliative care. Enhanced training and awareness, and further studies, would be needed to optimize the decision process and delineate the benefit of palliative care, and to guide evidence-based practice in the transplant population.
Topics: Humans; Kidney Transplantation; Palliative Care; Kidney Failure, Chronic; Graft Rejection; Quality of Life
PubMed: 38769799
DOI: 10.21037/apm-23-413 -
Annals of Palliative Medicine Feb 2022Surgeons are frequently consulted for assistance in the palliative management of patients, and surgery is an essential tool in the armamentarium of comprehensive...
Surgeons are frequently consulted for assistance in the palliative management of patients, and surgery is an essential tool in the armamentarium of comprehensive palliative care. Palliative surgical consults are some of the most challenging surgical consults, not only for technical reasons, but also because of the (usually) higher odds of morbidity or mortality, often in the setting of a limited life expectancy. Surgery is also often seen as the last possibility of hope, which can place a great emotional burden on the surgeon. Surgeons find themselves torn between concern about causing more harm than good, and not wanting to miss an opportunity to help. Although there is a growing body of literature around the outcomes for palliative surgery and patient selection, most palliative surgery decisions are still not evidence-based, but rather experienced-based. Because palliative surgical decision-making relies heavily on the surgeon's experience and risk (and/or regret) tolerance, surgeons often find themselves called upon to explain highly complex and nuanced concepts with existential outcomes to people who are desperate for hope. Even for the best communicators, achieving the goals of effective communication can be challenging in these situations, and in some instances, may seem unachievable. This article examines the communication challenges faced by surgeons in the palliative surgical setting and recommends specific strategies and approaches to help address those challenges and facilitate effective communication. Lastly, it considers the most necessary element of care for most patients and surgeons in the palliative setting: hope.
Topics: Communication; Humans; Palliative Care; Patient Selection; Referral and Consultation
PubMed: 35016524
DOI: 10.21037/apm-20-2590 -
Arquivos de Neuro-psiquiatria May 2022This article aims to expand the understanding of how it is possible to alleviate suffering and enable a dignified life trajectory for patients with progressive...
This article aims to expand the understanding of how it is possible to alleviate suffering and enable a dignified life trajectory for patients with progressive neurological diseases or with severe and permanent neurological impairment. The four most common disease trajectories described for people with chronic and progressive disease used to advance care planning, Brazilian normative ethical resolutions, evidence-based benefits of palliative care (PC), as well as particularities of PC in neurology, such as neurological symptom control, caring for existential and psychological suffering, care provider's needs and particularities of pediatric neurologic PC are reviewed.
Topics: Brazil; Child; Humans; Nervous System Diseases; Neurology; Palliative Care
PubMed: 35976309
DOI: 10.1590/0004-282X-ANP-2022-S119 -
BMJ Supportive & Palliative Care Sep 2023To explore perceptions, experiences and expectations with respect to palliative care of patients with severe mental illness (SMI) and an incurable, life-limiting chronic...
OBJECTIVES
To explore perceptions, experiences and expectations with respect to palliative care of patients with severe mental illness (SMI) and an incurable, life-limiting chronic illness.
METHODS
Face-to-face semistructured interviews were conducted with 12 patients (10 of them living in a mental healthcare institution) with severe mental and physical health issues in the Netherlands. A semistructured interview guide was used to elicit perceptions of, experiences with and expectations regarding palliative care. Data were analysed using inductive content analysis.
RESULTS
Analysis of the data revealed eight categories: perceptions on health and health issues, coping with illness and symptoms, experiences with and wishes for current healthcare, contact with relatives and coresidents, experiences with end of life of relatives and coresidents, willingness to discuss end of life and death, wishes and expectations regarding one's own end of life and practical aspects relating to matters after death. These categories were clustered into two separate themes: current situation and anticipation of end of life. Interviewees with SMI appeared not accustomed to communicate about end-of-life issues, death and dying due to their life-threatening illness. They tended to discuss only their current situation and, after further exploration of the researcher, the terminal phase of life. They seemed not engaged in their future palliative care planning.
CONCLUSIONS
Findings of this study highlight inadequacies in advance care planning for patients with SMI. Results suggest using values, current and near wishes, and needs as a starting point for establishing a gradual discussion concerning goals and preferences for future medical and mental treatment and care.
Topics: Humans; Palliative Care; Terminal Care; Hospice and Palliative Care Nursing; Mental Disorders; Death
PubMed: 32788275
DOI: 10.1136/bmjspcare-2019-002122