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Journal of Pain and Symptom Management Aug 2023With the expansion of palliative care services in clinical settings, clinical decision support systems (CDSSs) have become increasingly crucial for assisting bedside... (Review)
Review
CONTEXT
With the expansion of palliative care services in clinical settings, clinical decision support systems (CDSSs) have become increasingly crucial for assisting bedside nurses and other clinicians in improving the quality of care to patients with life-limiting health conditions.
OBJECTIVES
To characterize palliative care CDSSs and explore end-users' actions taken, adherence recommendations, and clinical decision time.
METHODS
The CINAHL, Embase, and PubMed databases were searched from inception to September 2022. The review was developed following the preferred reporting items for systematic reviews and meta-analyses extension for scoping reviews guidelines. Qualified studies were described in tables and assessed the level of evidence.
RESULTS
A total of 284 abstracts were screened, and 12 studies comprised the final sample. The CDSSs selected focused on identifying patients who could benefit from palliative care based on their health status, making referrals to palliative care services, and managing medications and symptom control. Despite the variability of palliative CDSSs, all studies reported that CDSSs assisted clinicians in becoming more informed about palliative care options leading to better decisions and improved patient outcomes. Seven studies explored the impact of CDSSs on end-user adherence. Three studies revealed high adherence to recommendations while four had low adherence. Lack of feature customization and trust in guideline-based in the initial stages of feasibility and usability testing were evident, limiting the usefulness for nurses and other clinicians.
CONCLUSION
This study demonstrated that implementing palliative care CDSSs can assist nurses and other clinicians in improving the quality of care for palliative patients. The studies' different methodological approaches and variations in palliative CDSSs made it challenging to compare and validate the applicability under which CDSSs are effective. Further research utilizing rigorous methods to evaluate the impact of clinical decision support features and guideline-based actions on clinicians' adherence and efficiency is recommended.
Topics: Humans; Palliative Care; Decision Support Systems, Clinical; Hospice and Palliative Care Nursing; Referral and Consultation
PubMed: 36933748
DOI: 10.1016/j.jpainsymman.2023.03.006 -
Journal of Pain and Symptom Management Sep 2023Lack of public knowledge of palliative care may be a barrier to timely use of palliative care and hinder engagement in advance care planning (ACP). Little research has...
CONTEXT
Lack of public knowledge of palliative care may be a barrier to timely use of palliative care and hinder engagement in advance care planning (ACP). Little research has been conducted on (the relationship between) awareness and actual knowledge of palliative care.
OBJECTIVES
To determine awareness and actual knowledge of palliative care and explore factors that contribute to knowledge of palliative care among older people.
METHODS
A cross-sectional study in a representative sample of 1242 Dutch people (≥ 65 years; response 93.2%) on whether they had heard of palliative care and knowledge statements about palliative care.
RESULTS
The majority had heard of the term palliative care (90.1%), and 47.1% reported to know (quite) exactly what it means. Most knew palliative care is not only for people with cancer (73.9%) and is not only provided in hospice facilities (60.6%). A minority knew palliative care can be provided alongside life-prolonging treatment (29.8%) and is not only for people who have a few weeks left to live (23.5%). Experience with palliative care through family, friends and/or acquaintances (range ORs: 1.35-3.39 for the four statements), higher education (ORs: 2.09-4.81), being female (ORs: 1.56-1.91), and higher income (OR: 1.93) were positively associated with one or more statements, while increasing age (ORs: 0.52-0.66) was negatively associated.
CONCLUSION
Knowledge of palliative care is limited, stressing the need for population-wide interventions, including information meetings. Attention should be paid to timely attention for palliative care needs. This might stimulate ACP and raise public knowledge of (im) possibilities of palliative care.
Topics: Humans; Female; Aged; Male; Palliative Care; Cross-Sectional Studies; Hospice Care; Hospice and Palliative Care Nursing; Advance Care Planning
PubMed: 37207787
DOI: 10.1016/j.jpainsymman.2023.05.005 -
South African Medical Journal =... Feb 2024
Topics: Humans; South Africa; Palliative Care; Attitude to Death; Terminal Care; Death
PubMed: 38525566
DOI: No ID Found -
American Society of Clinical Oncology... Jun 2024Early palliative care, palliative care integrated with oncology care early in the course of illness, has myriad benefits for patients and their caregivers, including... (Review)
Review
Early palliative care, palliative care integrated with oncology care early in the course of illness, has myriad benefits for patients and their caregivers, including improved quality of life, reduced physical and psychological symptom burden, enhanced prognostic awareness, and reduced health care utilization at the end of life. Although ASCO and others recommend early palliative care for all patients with advanced cancer, widespread implementation of early palliative care has not been realized because of barriers such as insufficient reimbursement and a palliative care workforce shortage. Investigators have recently tested several implementation strategies to overcome these barriers, including triggers for palliative care consultations, telehealth delivery, navigator-delivered interventions, and primary palliative care interventions. More research is needed to identify mechanisms to distribute palliative care optimally and equitably. Simultaneously, the transformation of the oncology treatment landscape has led to shifts in the supportive care needs of patients and caregivers, who may experience longer, uncertain trajectories of cancer. Now, palliative care also plays a clear role in the care of patients with hematologic malignancies and may be beneficial for patients undergoing phase I clinical trials and their caregivers. Further research and clinical guidance regarding how to balance the risks and benefits of opioid therapy and safely manage cancer-related pain across this wide range of settings are urgently needed. The strengths of early palliative care in supporting patients' and caregivers' coping and centering decisions on their goals and values remain valuable in the care of patients receiving cutting-edge personalized cancer care.
Topics: Humans; Palliative Care; Neoplasms; Precision Medicine; Quality of Life
PubMed: 38815187
DOI: 10.1200/EDBK_100038 -
BMC Palliative Care May 2024The integral model of Palliative Care recognizes the community as essential element in improving quality of life of patients and families. It is necessary to find a... (Review)
Review
BACKGROUND
The integral model of Palliative Care recognizes the community as essential element in improving quality of life of patients and families. It is necessary to find a formula that allows the community to have a voice. The aim of this scoping review is to identify barriers and facilitators to engage community in PC.
METHODS
Systematic search was conducted in NICE, Cochrane Library, Health Evidence, CINAHL and PubMed database.
KEYWORDS
Palliative care, End of life care, community networks, community engagement, public engagement, community participation, social participation, barriers and facilitators.
RESULTS
Nine hundred seventy-one results were obtained. Search strategy and inclusion criteria yielded 13 studies that were read in detail to identify factors influencing community engagement in palliative care, categorized into: Public health and public engagement; Community attitudes towards palliative care, death and preferences at the end of life; Importance of volunteers in public engagement programs; Compassionate communities.
CONCLUSION
Societal awareness must be a facilitated process to catalyse public engagement efforts. National policy initiatives and regional system support provide legitimacy and focus is essential for funding. The first step is to get a sense of what is important to society, bearing in mind cultural differences and to channel those aspects through health care professionals; connecting the most assistential part with community resources. The process and long-term results need to be systematically evaluated.
Topics: Humans; Community Participation; Palliative Care; Terminal Care; Community Networks
PubMed: 38711035
DOI: 10.1186/s12904-024-01424-4 -
JCO Global Oncology Aug 2023Early integration of pediatric palliative care (PPC) for children with cancer is critical to improving the quality of life of both the patient and family. Understanding...
PURPOSE
Early integration of pediatric palliative care (PPC) for children with cancer is critical to improving the quality of life of both the patient and family. Understanding physician perceptions of palliative care and perceived barriers to early integration is necessary to develop PPC in Brazil.
METHODS
The Assessing Doctors' Attitudes on Palliative Treatment survey was modified for use in Brazil. The survey was open from January 2022 to June 2022 and distributed to physicians of all specialties from participating institutions who treat children with cancer. Statistical analysis was complemented by qualitative analysis of open-ended responses.
RESULTS
A total of 272 respondents participated. Most respondents reported access to PPC experts for consultation (77.2%) and 34.5% indicated previous palliative care training. Physician knowledge of PPC was generally aligned with WHO guidance (median alignment, 93.0%; range, 80.5%-98.2%). However, about half (53.3%) felt comfortable addressing physical needs of patients receiving PPC, 35.3% addressing emotional needs, 25.8% addressing spiritual needs, and 33.5% addressing grief and bereavement needs. Most respondents (65.4%) felt palliative care should be involved from diagnosis, but only 10.3% stated that this occurred in their setting. The most important barriers identified were physician discomfort (89.0%), limited physician knowledge (88.6%), and lack of home-based services (83.8%).
CONCLUSION
Despite a strong understanding of the role of palliative care, physicians in Brazil reported low confidence delivering PPC to children with cancer. Additionally, physicians generally believed that PPC should be integrated earlier in the disease trajectory of children with cancer. This work will direct educational and capacity building initiatives to ensure greater access to high-quality PPC for children with cancer in Brazil to address patient and family suffering.
Topics: Humans; Child; Palliative Care; Quality of Life; Brazil; Neoplasms; Physicians
PubMed: 37535886
DOI: 10.1200/GO.23.00057 -
BMC Palliative Care Mar 2024Children with life-threatening and life-limiting conditions can experience high levels of suffering due to multiple distressing symptoms that result in poor quality of...
BACKGROUND
Children with life-threatening and life-limiting conditions can experience high levels of suffering due to multiple distressing symptoms that result in poor quality of life and increase risk of long-term distress in their family members. High quality symptom treatment is needed for all these children and their families, even more so at the end-of-life. In this paper, we provide evidence-based recommendations for symptom treatment in paediatric palliative patients to optimize care.
METHODS
A multidisciplinary panel of 56 experts in paediatric palliative care and nine (bereaved) parents was established to develop recommendations on symptom treatment in paediatric palliative care including anxiety and depression, delirium, dyspnoea, haematological symptoms, coughing, skin complaints, nausea and vomiting, neurological symptoms, pain, death rattle, fatigue, paediatric palliative sedation and forgoing hydration and nutrition. Recommendations were based on evidence from a systematic literature search, additional literature sources (such as guidelines), clinical expertise, and patient and family values. We used the GRADE methodology for appraisal of evidence. Parents were included in the guideline panel to ensure the representation of patient and family values.
RESULTS
We included a total of 18 studies that reported on the effects of specific (non) pharmacological interventions to treat symptoms in paediatric palliative care. A few of these interventions showed significant improvement in symptom relief. This evidence could only (partly) answer eight out of 27 clinical questions. We included 29 guidelines and two textbooks as additional literature to deal with lack of evidence. In total, we formulated 221 recommendations on symptom treatment in paediatric palliative care based on evidence, additional literature, clinical expertise, and patient and family values.
CONCLUSION
Even though available evidence on symptom-related paediatric palliative care interventions has increased, there still is a paucity of evidence in paediatric palliative care. We urge for international multidisciplinary multi-institutional collaboration to perform high-quality research and contribute to the optimization of symptom relief in palliative care for all children worldwide.
Topics: Humans; Child; Palliative Care; Quality of Life; Terminal Care; Pain; Family
PubMed: 38481215
DOI: 10.1186/s12904-024-01367-w -
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 -
BMC Palliative Care Oct 2023Despite continuously growing, palliative care in Thailand still needs further development. Many family physicians provide various levels of palliative care. However,...
INTRODUCTION
Despite continuously growing, palliative care in Thailand still needs further development. Many family physicians provide various levels of palliative care. However, there is no information regarding what aspects of palliative care family practitioners provide and how much confidence they have. This study aims to identify gaps between expected care domains and provided care and to reveal the domains in which family physicians are less confident.
METHOD
This study is a cross-sectional survey study. An online questionnaire was publicly published to recruit target participants, Thai family physicians who have received formal residency training and actively practice medicine. The estimated number of actively practising family physicians was 540 persons. Participants were asked which palliative care domains they provide and to rate their confidence in each. A narrative analysis was performed using two relevant frameworks.
RESULT
One hundred and seven responses were received. Forty-six per cent of participants have no further training in palliative care other than during their residency programs. At least 63.6 per cent of participants provide palliative care two half-day per week or less. Grief and spiritual care enjoyed the least percentage of the participant's responses regarding provided care. These two domains also received the lowest percentage of confidence in providing care from the participants.
DISCUSSION
Though they are considered essential domains, there are gaps between expected care and actual care in grief management and spiritual care. Grief and bereavement care are mentioned in the residency curriculum; nonetheless, there is an inconsistency regarding spiritual care. Increasing access to continuous education and integrating it into curriculums should be considered to reduce the gaps. Additionally, a national guideline regarding levels of palliative care and the roles of family physicians will benefit from establishing comprehensive palliative care programmes.
Topics: Humans; Cross-Sectional Studies; Palliative Care; Southeast Asian People; Surveys and Questionnaires; Thailand; Family Practice
PubMed: 37794416
DOI: 10.1186/s12904-023-01272-8 -
Revista Brasileira de Enfermagem 2023to analyze undergraduate nursing course coordinators' perception about nursing training in palliative care.
OBJECTIVES
to analyze undergraduate nursing course coordinators' perception about nursing training in palliative care.
METHODS
a descriptive study, with a qualitative approach and thematic content analysis, carried out with coordinators of nursing courses in Higher Education Institutions in Rio Grande do Norte.
RESULTS
three thematic categories emerged: Nursing training in palliative care; Potentialities for teaching palliative care; and Challenges of teaching in palliative care. The coordinators described as potentialities: transversality, theoretical and practical approach, optional subject, university extensions, interdisciplinarity and transdisciplinary approach, and as challenges: biomedical model in health education and insufficient professor training.
FINAL CONSIDERATIONS
palliative care teaching in the researched institutions in the nursing education process is approached in an incipient and fragmented way, and almost always without having a specific curricular component on the subject, being present as one of its contents.
Topics: Humans; Palliative Care; Education, Nursing, Baccalaureate; Students, Nursing; Education, Nursing; Curriculum; Perception
PubMed: 37820159
DOI: 10.1590/0034-7167-2022-0222