Palliative care interventions in advanced dementia.
Ontology highlight
ABSTRACT:
SUBMITTER: Walsh SC
PROVIDER: S-EPMC8478014 | biostudies-literature | 2021 Sep
REPOSITORIES: biostudies-literature
Publications
Palliative care interventions in advanced dementia.
Walsh Sharon C SC Murphy Edel E Devane Declan D Sampson Elizabeth L EL Connolly Sheelah S Carney Patricia P O'Shea Eamon E
The Cochrane database of systematic reviews 20210928
<h4>Background</h4>Dementia is a chronic, progressive and ultimately fatal neurodegenerative disease. Advanced dementia is characterised by profound cognitive impairment, inability to communicate verbally and complete functional dependence. Usual care of people with advanced dementia is not underpinned universally by a palliative approach. Palliative care has focused traditionally on care of people with cancer, but for more than a decade, there have been calls worldwide to extend palliative care ...[more]
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Project description:Dementia syndrome is common and expected to increase significantly among older people and characterized by the loss of cognitive, psychological and physical functions. Palliative care is applicable for people with dementia, however they are less likely to have access to palliative care. This narrative review summarizes specifics of palliative care in advanced dementia. Most people with advanced dementia live and die in institutional care and they suffer a range of burdensome symptoms and complications. Shortly before dying people with advanced dementia suffer symptoms as pain, eating problems, breathlessness, neuropsychiatric symptoms, and complications as respiratory or urinary infections and frequently experience burdensome transitions. Pharmacological and nonpharmacological interventions may reduce symptom burden. Sensitive observation and appropriate assessment tools enable health professionals to assess symptoms and needs and to evaluate interventions. Due to lack of decisional capacity, proxy decision making is often necessary. Advanced care planning is an opportunity establishing values and preferences and is associated with comfort and decrease of burdensome interventions. Family carers are important for people with advanced dementia they also experience distress and are in need for support. Recommendations refer to early integration of palliative care, recognizing signs of approaching death, symptom assessment and management, advanced care planning, person-centered care, continuity of care, and collaboration of health care providers.
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Project description:Palliative care is essential in the care of people with advanced dementia, due to the increasing number of patients requiring care in the final stages of life. Nurses need to acquire specific knowledge and skills to provide quality palliative care. The Questionnaire on Palliative Care for Advanced Dementia (qPAD) is useful for assessing knowledge and attitudes toward palliative care, but its adaptation to the Spanish language and analysis of its effectiveness and usefulness for the Spanish culture is lacking. To report on the Spanish language adaptation and psychometric analysis of the qPAD. The Questionnaire on Palliative Care for Advanced Dementia Spanish version (qPAD-SV) was obtained from a process that included translation, back-translation, comparison with other language versions, expert review, and pilot study. Content validity, criterion validity, and reliability of the questionnaire were analyzed. The difficulty and discrimination indices of items composing the knowledge subscale were also calculated. Adequate content validity index obtained after the analysis of qPAD-SV by a heterogeneous group of experts was found (overall CVI = 0.96; 0.95 for the Knowledge subscale and 0.99 for the Attitudes subscale). Significant correlations with the Palliative Care Knowledge test (rho = 0.368, p < 0.001) and Self-Efficacy in Palliative Care Scale (rho = 0.621, p < 0.001) show an adequate criterion validity. Cronbach's alpha coefficients for the Knowledge subscale (0.60) and the Attitudes subscale (0.91) supported the reliability of the qPAD-SV. The questionnaire had an overall difficulty index of 0.71, with three items that could be considered difficult or very difficult, and eleven items that could be considered very easy. Although it shows internal consistency, validity, and difficulty indices similar to those obtained by qPAD versions in other languages, a reformulation of the items with lower content validity or discrimination indices and those that show difficulties in their comprehension is an aspect to be taken into account to improve this tool. The qPAD-SV is a useful instrument in Spanish to measure the knowledge of Spanish nurses in palliative care and is suitable for international comparisons.
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Project description:Primary palliative care is a fundamental aspect of high-quality care for patients with a serious illness such as dementia. The clinician caring for a patient and family suffering with dementia can provide primary palliative care in numerous ways. Perhaps the most important aspects are high quality communication while sharing a diagnosis, counseling the patient through progression of illness and prognostication, and referral to hospice when appropriate. COVID-19 presents additional risks of intensive care requirement and mortality which we must help patients and families navigate. Throughout all of these discussions, the astute clinician must monitor the patient's decision making capacity and balance respect for autonomy with protection against uninformed consent. Excellent primary palliative care also involves discussion of deprescribing medications of uncertain benefit such as long term use of cholinesterase inhibitors and memantine and being vigilant in the monitoring of pain with its relationship to behavioral disturbance in patients with dementia. Clinicians should follow a standardized approach to pain management in this vulnerable population. Caregiver burden is high for patients with dementia and comprehensive care should also address this burden and implement reduction strategies. When these aspects of care are particularly complex or initial managements strategies fall short, palliative care specialists can be an important additional resource not only for the patient and family, but for the care team struggling to guide the way through a disease with innumerable challenges.
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Project description:Pancreatic adenocarcinoma is the third leading cause of cancer death in the United States. Unfortunately, at diagnosis, most patients are not candidates for curative resection. Surgical palliation, a procedure performed with the intention of relieving symptoms or improving quality of life, comes to the forefront of management. This article reviews the palliative management of unresectable pancreatic cancer, including obstructive jaundice, duodenal obstruction and pain control with celiac plexus block. Although surgical bypasses for both biliary and duodenal obstructions usually achieve good technical success, they result in considerable perioperative morbidity and mortality, even when performed laparoscopically. The effectiveness of self-expanding metal stents for biliary drainage is excellent with low morbidity. Surgical gastrojejunostomy for duodenal obstruction appears to be best for patients with a life expectancy of greater than 2 mo while endoscopic stenting has been shown to be feasible with good symptom relief in those with a shorter life expectancy. Regardless of the palliative procedure performed, all physicians involved must be adequately trained in end of life management to ensure the best possible care for patients.
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Project description:ObjectiveThe objective of this study was to delineate and measure the symptom distress experienced by patients with advanced cervical cancer at the time of palliative care (PC) referral.MethodsA total of 156 patients with advanced cervical cancer were referred to PC from 2010 to 2012. Of these, 88 patients had completed the Edmonton Symptom Assessment System (ESAS) and were included in the analysis.ResultsThe mean age was 45years (25-76), 47% were white, 18% were African American, and 33% were Hispanic. Fifty-one percent were married, 64% had no advance directives, and 75% had recurrent disease. Clinically significant symptoms recorded by patient reported outcome measurement (defined as ESAS scores ≥4) were pain (81%), anorexia (72%), a poor feeling of well-being (70%), fatigue (69%), and insomnia (54%). The chief complaint recorded for the visit was pain in 94% of patients. According to the PC specialists' assessment, pain (96%), emotional distress (77%), and constipation (50%) were predominant symptoms. Various PC interventions including opioids, laxatives, and expressive supportive counseling were provided. Clinically significant symptoms including nausea, depression, anxiety, and feeling of well-being were significantly improved at follow-up visits.ConclusionMore than half of patients with advanced cervical cancer were significantly burdened with pain, anorexia, a poor feeling of well-being, fatigue, insomnia, and constipation at the time of PC referral. This research is an integral step towards developing a standardized tool for assessing symptoms in women diagnosed with cervical cancer and thus maximizing effectiveness of patient centered care.
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Project description:ObjectiveTo identify and summarise evaluated interventions aiming to improve the communication of palliative care (PC) and end-of-life (EoL) issues in physicians caring for cancer patients. Such interventions are needed with regard to the aim of an earlier communication of those issues in oncology daily practice, which is associated with a range of benefits for patients and caregivers but is often impeded by physicians' communication insecurities.DesignSystematic review based on the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines.Data sourcesRelevant publications were systematically searched in MEDLINE, PsycINFO, CINAHL and Web of Science databases in September 2020 with an update in July 2021.Eligibility criteriaWe included publications reporting a quantitative evaluation of a communication intervention on one or more PC/EoL issues with a communication-related main outcome. Target group had to be physicians caring for cancer patients non-specialist in PC.Data extraction and synthesisTwo independent raters extracted intervention characteristics, publication characteristics and publication quality. Results were narratively synthesised.Results24 publications reporting 22 interventions were included. 13 publications reported randomised controlled trials. A majority of the interventions addressed one specific PC/EoL issue, most often breaking bad news. Teaching strategies mostly involved role-plays. Target group were mainly oncologists. In addition to self-reported outcome measurements for evaluation, most publications also reported the use of external rating data. All but one publication reported significant intervention effects on at least one outcome parameter. Publication quality was overall moderate.ConclusionsThe empirically tested communication interventions on PC/EoL issues seem to effectively improve physicians' communication. Future interventions should focus on other issues than breaking bad news, such as preparing for the future. Target group should also be organ-specific oncologists, as all primary caring physicians are responsible for timely communication. Our risk-of-bias assessment revealed some weaknesses, indicating that more high-quality studies for evaluation are needed.Prospero registration numberCRD42020191054.
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Project description: Not available
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