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1.
Burns ; 50(6): 1632-1639, 2024 Aug.
Article in English | MEDLINE | ID: mdl-38582696

ABSTRACT

BACKGROUND: The need to integrate palliative/end-of-life care across healthcare systems is critical considering the increasing prevalence of health-related suffering. In burn care, however, a general lack of practice recommendations persists. Our burn unit developed practice recommendations to be implemented and this study aimed to examine the components of the practice recommendations that were utilised and aspects that were not to guide further training and collaborative efforts. METHODS: We employed a prospective clinical observation approach and chart review to ascertain the utilisation of the recommendations over a 3-year period for all burn patients. We formulated a set of trigger parametres based on existing literature and burn care staff consultation in our unit. Additionally, a checklist based on the practice recommendations was created to record the observations and chart review findings. All records were entered into a secure form on Google Forms following which we employed descriptive statistics in the form of counts and percentages to analyse the data. RESULTS: Of the 170 burn patients admitted, 66 (39%) persons died. Although several aspects of each practice recommendation were observed, post-bereavement support and collaboration across teams are still limited. Additionally, though the practice recommendations were comprehensive to support holistic care, a preponderance of delivering physical care was noted. The components of the practice recommendations that were not utilised include undertaking comprehensive assessment to identify and resolve patient needs (such as spiritual and psychosocial needs), supporting family members across the injury trajectory, involvement of a palliative care team member, and post-bereavement support for family members, and burn care staff. The components that were not utilised could have undoubtedly helped to achieve a comprehensive approach to care with greater family and palliative care input. CONCLUSION: We find a great need to equip burn care staff with general palliative care skills. Also, ongoing collaboration/ partnership between the burn care and palliative care teams need to be strengthened. Active family engagement, identifying, and resolving other patient needs beyond the physical aspect also needs further attention to ensure a comprehensive approach to end of life care in the burn unit.


Subject(s)
Burn Units , Burns , Intensive Care Units , Palliative Care , Terminal Care , Humans , Burns/therapy , Palliative Care/standards , Terminal Care/standards , Male , Ghana , Female , Middle Aged , Adult , Intensive Care Units/standards , Intensive Care Units/organization & administration , Prospective Studies , Burn Units/organization & administration , Aged , Young Adult , Adolescent , Practice Guidelines as Topic , Holistic Health , Tertiary Care Centers , Checklist
2.
J Palliat Med ; 27(6): 784-788, 2024 Jun.
Article in English | MEDLINE | ID: mdl-38466991

ABSTRACT

Background: Palliative PLUS (PP) at the Minneapolis Veterans Affairs Health Care System (MVAHCS) is an interdisciplinary team that seeks to improve veteran access to palliative and hospice resources. Palliative care pharmacists were incorporated to increase patient access to palliative specialties. Objective: To identify and categorize pharmacist interventions within an outpatient PP team at the MVAHCS. Methods: This quality improvement project was a retrospective analysis of the electronic health record. Results: A total of 84 patients were participating in the PP program over 13 months. Among those patients, 25 had pharmacist involvement and a total of 56 interventions were identified. Of those interventions, 29 (51.8%) were direct interventions and 27 (48.2%) were curbside consults. Most interventions involved medication counseling and medication adherence. Conclusion: Pharmacists made an impact on the PP team through direct patient interventions involving medication counseling and aided the interdisciplinary team by facilitating patient medication adherence.


Subject(s)
Hospitals, Veterans , Palliative Care , Pharmacists , United States Department of Veterans Affairs , Humans , Retrospective Studies , Male , Female , United States , Aged , Patient Care Team/organization & administration , Middle Aged , Quality Improvement , Aged, 80 and over , Veterans
3.
Chest ; 2024 Feb 12.
Article in English | MEDLINE | ID: mdl-38354905

ABSTRACT

TOPIC IMPORTANCE: Death is common in the ICU and often occurs after a decision to withhold or withdraw life-sustaining therapies. Care of the dying is a core skill for ICU clinicians, requiring expert communication, primarily with family of critically ill patients. REVIEW FINDINGS: Limited high-quality evidence supports specific practices related to the care of dying patients in the ICU; thus, many of the recommendations that exist are based on expert opinion. Value exists in sharing a practical approach to caring for patients during the dying process, including topics to be addressed with family members, rationales for recommended care, and strategies for implementing comfort measures only. Through dedicated preparation and planning, clinicians can help family members navigate this intense experience. SUMMARY: After a decision had been made to discontinue life-sustaining therapies, family members need to be given a clear description of comfort measures only and provided with additional detail about what it entails, including therapies or interventions to be discontinued, monitoring during the dying process, and common features of the dying process. Order sets can be a valuable resource for ensuring that adequate analgesia and sedation are available and the care plan is enacted properly. To achieve a good death for patients, a collaborative effort among members of the care team is essential.

4.
Gerontologist ; 64(6)2024 Jun 01.
Article in English | MEDLINE | ID: mdl-38349015

ABSTRACT

BACKGROUND AND OBJECTIVES: The inability of individuals in the advanced stage of dementia to communicate about preferences in care at the end-of-life poses a challenge for healthcare professionals and family carers. The proven effective Family Carer Decision Support intervention has been designed to inform family carers about end-of-life care options available to a person living with advanced dementia. The objectives of the mySupport study were to adapt the application of the intervention for use in different countries, assess impact on family satisfaction and decision-making, and identify costs and supportive conditions for the implementation of the intervention. RESEARCH DESIGN AND METHODS: A multiple-case study design was chosen where the nursing home was the case. Nursing homes were enrolled from six countries: Canada, Czech Republic, Italy, Netherlands, Republic of Ireland, and United Kingdom. RESULTS: Seventeen cases (nursing homes) participated, with a total of 296 interviews completed including family carers, nursing home staff, and health providers. Five themes relevant to the implementation of the intervention were identified: supportive relationships; committed staff; perceived value of the intervention; the influence of external factors on the nursing home; and resource impact of delivery. DISCUSSION AND IMPLICATIONS: There is a commonality of facilitators and barriers across countries when introducing practice innovation. A key learning point was the importance of implementation being accompanied by committed and supported nursing home leadership. The nursing home context is dynamic and multiple factors influence implementation at different points of time.


Subject(s)
Advance Care Planning , Caregivers , Dementia , Nursing Homes , Humans , Nursing Homes/organization & administration , Caregivers/psychology , Terminal Care , Czech Republic , Canada , Netherlands , Italy , United Kingdom , Male , Aged , Decision Making , Female , Ireland
5.
J Intensive Care Med ; 39(3): 250-256, 2024 Mar.
Article in English | MEDLINE | ID: mdl-37674378

ABSTRACT

Background: Although palliative medicine (PM) is more commonly being integrated into the intensive care unit (ICU), research on racial disparities in this area is lacking. Our objectives were to (a) identify racial disparities in utilization of PM consultation for patients who received ICU care and (b) determine if there were differences in the use of code status or PM consultation over time based on race. Materials and Methods: Retrospective analysis of 571 patients, 18 years and above, at a tertiary care institution who received ICU care and died during their hospital stay. We analyzed two timeframes, 2008-2009 and 2018-2019. Univariate analysis was utilized to evaluate baseline characteristics. A multivariate logistic regression model and interaction P values were employed to assess for differential use of PM consultation, do not resuscitate (DNR) orders, and comfort care (CC) orders between races in aggregate and for changes over time. Results: There was a notable increase in Black/African-American (AA) (54% to 61%) and Hispanic/Latino (2% to 3%) patients over time in our population. Compared to White patients, we found no differences between PM consultation and CC orders. There was a lower probability of DNR orders for Black/AA (adjusted odds ratio [aOR] 0.569; P = .049; confidence interval [CI]: 0.324-0.997) and other/unknown/multiracial patients (aOR: 0.389; P = .273; CI: 0.169-0.900). Comparing our earlier time period to the later time period, we found an increased usage of PM for all patients. Interaction P values suggest there were no differences between races regarding PM, DNR, and CC orders. Conclusions: PM use has increased over time at our institution. Contrary to the previous literature, there were no differences in the frequency of utilization of PM consultation between races. Further analysis to evaluate the usage of PM in the ICU setting in varying populations and geographic locations is warranted.


Subject(s)
Hospice Care , Palliative Medicine , Terminal Care , Humans , Retrospective Studies , Palliative Care , Resuscitation Orders , Intensive Care Units
6.
Am J Med Sci ; 367(1): 35-40, 2024 Jan.
Article in English | MEDLINE | ID: mdl-37923293

ABSTRACT

BACKGROUND: Patients with end-stage liver disease (ESLD) who are not transplant candidates often have a trajectory of rapid decline and death similar to patients with stage IV cancer. Palliative care (PC) services have been shown to be underutilized for such patients. Most studies examining the role of PC in ESLD have been done at transplant centers. Thus, determining the utilization and benefit of PC at a non-transplant tertiary center may help establish a standard of care in the management of patients with ESLD not eligible for transplant. METHODS: We conducted a retrospective analysis of adult (>18 years) patients with ESLD admitted to Rochester Regional Health (RRH) system hospitals from 2012 to 2021. Patients were divided into groups based on the presence or absence of PC involvement. Baseline characteristics were recorded. The impact of PC was assessed by comparing the number of hospitalizations before and after the involvement of PC, comparing code status changes, health care proxy (HCP) assignments, Aspira catheter placements, and frequency of repeated paracentesis. RESULTS: In our analysis of 576 patients, 41.1% (237 patients) received a PC consult (PC group), while 58.9% (339 patients) did not (no-PC group). Baseline characteristics were comparable. However, their mean number of admissions significantly decreased (15.66 vs. 3.49, p < 0.001) after PC involvement. Full code status was more prevalent in the no-PC group (67.8% vs. 18.6%, p < 0.001), while comfort care code status was more common in the PC group (59.9% vs. 20.6%, p < 0.001). Changes in code status were significantly higher in the PC group (77.6% vs. 29.2%, p < 0.001). The PC group had a significantly higher mortality rate (83.1% vs. 46.4%, p < 0.01). Patients in the PC group had a higher likelihood of having an assigned HCP (63.7% vs. 37.5%, p < 0.001). PC referral was associated with more frequent use of an Aspira catheter (5.9% vs. 0.9%, p < 0.001) and more frequent paracentesis (30.8% vs. 16.8%, p < 0.001). CONCLUSIONS: In conclusion, our study provides compelling evidence of the diverse advantages of palliative care for patients with end-stage liver disease, including reduced admissions, improved goals of care, code status modifications, enhanced healthcare proxy assignments, and targeted interventions. These findings highlight the potential significance of early integration of palliative care in the disease trajectory to provide comprehensive, patient-centered care that addresses the unique needs and preferences of individuals with advanced liver disease.


Subject(s)
End Stage Liver Disease , Terminal Care , Adult , Humans , Palliative Care , Retrospective Studies , End Stage Liver Disease/therapy , Referral and Consultation
7.
Nursing (Ed. bras., Impr.) ; 26(305): 9978-9987, nov.2023. tab
Article in English, Portuguese | LILACS, BDENF - Nursing | ID: biblio-1526240

ABSTRACT

Analisar comparativamente o nível de conforto de familiares que participaram da visita ampliada e da visita social em Unidade de Terapia Intensiva. Método: Estudo transversal, desenvolvido com 57 familiares dos sujeitos internados na Unidade de Terapia Intensiva, entre 2019 e 2020. O conforto foi avaliado pela Escala de Conforto para Familiares de Pessoas em Estado Crítico de Saúde. Os dados foram analisados descritivamente e a análise bivariada pelo teste de T Student. O nível de significância estatística foi de 5%. Resultados: Os familiares inclusos na visita ampliada dispõem de um nível de conforto (4,00 ±0,53) maior que os da visita social (3,57 ±0,51), com (p=0,004). Observa-se melhor comunicação entre a equipe e os familiares da visita ampliada e um maior conhecimento por parte desses sobre o quadro de saúde do enfermo. Conclusão: A visita ampliada tem proporcionado maior nível de conforto nos familiares quando comparadas com a visita social.(AU)


To comparatively analyze the comfort level of family members who participated in the extended visit and the social visit in the Intensive Care Unit. Method: A cross-sectional study was carried out with 57 family members of patients admitted to the Intensive Care Unit between 2019 and 2020. Comfort was assessed using the Comfort Scale for Relatives of People in a Critical Health Condition. Data was analyzed descriptively and bivariate analysis using the Student's t-test. The level of statistical significance was 5%. Results: Family members included in the extended visit have a higher level of comfort (4.00 ±0.53) than those in the social visit (3.57 ±0.51), with (p=0.004). There was better communication between the team and the relatives during the extended visit and greater knowledge on the part of the latter about the patient's health condition. Conclusion: The extended visit has provided a greater level of comfort for family members when compared to the social visit.(AU)


Analizar comparativamente el nivel de confort de los familiares que participaron en la visita prolongada y la visita social en la Unidad de Cuidados Intensivos. Método: Se realizó un estudio transversal con 57 familiares de pacientes ingresados en la Unidad de Cuidados Intensivos entre 2019 y 2020. Se evaluó el confort mediante la Escala de Confort para Familiares de Personas en Estado Crítico de Salud. Los datos se analizaron de forma descriptiva y análisis bivariante mediante la prueba t de Student. El nivel de significación estadística fue del 5%. Resultados: Los familiares incluidos en la visita ampliada tienen un mayor nivel de confort (4,00 ±0,53) que los de la visita social (3,57 ±0,51), con (p=0,004). Hubo mejor comunicación entre el equipo y los familiares durante la visita ampliada y mayor conocimiento por parte de estos últimos sobre el estado de salud del paciente. Conclusiones: La visita ampliada ha proporcionado un mayor nivel de confort a los familiares en comparación con la visita social.(AU)


Subject(s)
Humans , Male , Female , Adult , Family , Hospice Care , Intensive Care Units
8.
World J Gastrointest Surg ; 15(9): 1959-1968, 2023 Sep 27.
Article in English | MEDLINE | ID: mdl-37901742

ABSTRACT

BACKGROUND: Patients with colorectal cancer may need postoperative nursing to improve prognosis, and conventional nursing is not effective. Clinical research is needed to explore nursing methods that can more effectively improve postoperative conditions on colorectal cancer patients undergoing colostomy. AIM: To explore the effect of internet multiple linkage mode-based extended care combined with in-hospital comfort care on colorectal cancer patients undergoing colostomy. METHODS: Data from 187 patients with colostomy treated in our hospital from May 2019 to March 2022 were collected and divided into three groups, A (n = 62), B (n = 62) and C (n = 63), according to different intervention methods. Group A received internet multiple linkage mode-based extended care combined with in-hospital comfort care. Group B received internet multiple linkage mode-based extended care. Group C received usual care intervention. Complications were compared among the three groups. The stoma self-efficacy scale, Hamilton Anxiety Scale, Hamilton Depression Scale, Brief Fatigue Inventory and City of Hope-quality of Life-ostomy Questionnaire before and after intervention were compared among the three groups. RESULTS: The complication rate of group A, B and C (16.13%, 20.97% and 60.32%, respectively) was significantly different (all P < 0.05). The incidence of complications in groups A and B was lower than that in group C, and there was no significant difference between groups A and B (P > 0.05). After intervention, the scores of ostomy care, social contact, diet choice, confidence in maintaining vitality, confidence in self-care of ostomy, confidence in sexual life, confidence in sexual satisfaction and confidence in physical labor in the three groups were all higher than before intervention, and the scores of groups A and B were higher than those of group C, with statistical significance (P < 0.05). The Hamilton Anxiety Scale and Hamilton Depression Scale scores of the three groups after intervention were lower than those before intervention. The scores of groups A and B were lower than those of group C, and the score of group A was lower than that of group B, all with statistical significance (all P < 0.05). There was a statistically significant difference in cancer-induced fatigue among the three groups (P < 0.05). After intervention, the scores of physical health, psychological health, social health and mental health of the three groups were lower than before the intervention. The scores of group A and B were lower than that of group C; and the score of group A was lower than that of group B, all with statistical significance (all P < 0.05). CONCLUSION: Internet multiple linkage mode-based extended care combined with in-hospital comfort care can effectively improve self-efficacy, bad mood, cancer-related fatigue and life quality of colorectal cancer patients undergoing colostomy.

9.
Front Pediatr ; 11: 1258285, 2023.
Article in English | MEDLINE | ID: mdl-37822320

ABSTRACT

Providing comfort while a patient is living with a life-limiting condition or at end of life is the hallmark of palliative care regardless of the patient's age. In perinatal palliative care, the patient is unable to speak for themselves. In this manuscript we will present guidelines garnered from the 15-year experience of the Neonatal Comfort Care Program at Columbia University Irving Medical Center, and how they provide care for families along the perinatal journey. We will describe essential tools and strategies necessary to consider in assessing and providing comfort to infants facing a life-limiting diagnosis in utero, born at the cusp of viability or critically ill where the burden of care may outweigh the benefit.

10.
J Feline Med Surg ; 25(9): 1098612X231201683, 2023 09.
Article in English | MEDLINE | ID: mdl-37768060

ABSTRACT

The '2023 AAFP/IAAHPC Feline Hospice and Palliative Care Guidelines' are authored by a Task Force of experts in feline hospice and palliative care convened by the American Association of Feline Practitioners and the International Association for Animal Hospice and Palliative Care. They emphasize the specialized communication skills and ethical considerations that are associated with feline hospice and palliative care, with references to other feline practice guidelines for a more complete discussion of specific diseases, feline pain management best practices and cat friendly interactions. A comprehensive, multi-step hospice consultation allows for tailoring the approach to both the cat and the family involved in the care. The consultation includes establishing 'budgets of care', a concept that greatly influences what can be done for the individual cat. The Guidelines acknowledge that each cat and caregiver will be different in this regard; and establishing what is reasonable, practical and ethical for the individual cat and caregiver is important. A further concept of the 'care unit' is introduced, which is extrapolated from human hospice and palliative care, and encourages and empowers the caregiver to become a part of the cat's care every step of the way. Ethical considerations include a decision-making framework. The importance of comfort care is emphasized, and the latest information available about how to assess the quality of a cat's life is reviewed. Emotional health is as equally important as physical health. Hence, it is fundamental to recognize that compromised physical health, with pain and/or illness, impairs emotional health. A limited discussion on euthanasia is included, referring to the AAFP's End of Life Educational Toolkit for recommendations to help the caregiver and the veterinary professional ensure a peaceful passing and transition - one that reflects the best interests of the individual cat and caregiver.


Subject(s)
Hospices , Palliative Care , Cats , Animals , Humans , Pain/veterinary , Pain Management/veterinary , Emotions
11.
Front Pediatr ; 11: 1215863, 2023.
Article in English | MEDLINE | ID: mdl-37456568

ABSTRACT

Background: The success of a training can be determined by the degree of learning transfer. To address a gap in educational offerings during the pandemic, an interdisciplinary team developed and offered a 3-day virtual course, called Next Level Perinatal Palliative Care Training. Objective: This study aimed to evaluate the transfer of learning and practice from a virtual training course on perinatal/neonatal palliative care (PNPC) by a range of clinicians. Study design: A descriptive prospective survey design was used to collect data at two time points, immediately following the training course and 6 months later. Frequency and descriptive statistics were used to measure the implementation of PNPC quality indicators, self-reported competence, and clinical facilitators and barriers. A t-test was used to compare participants' anticipated learning transfer to actual learning transfer. Two open-ended items assessed benefits and drawbacks of virtual training. Results: At course completion, participants anticipated opportunities to implement PNPC strategies with means of 84-87, and at the 6-month mark, the reported implementation had means ranging from 71 to 77. At 6 months post training, participants reported feeling competent/highly competent in each variable with frequency scores of 89%-98%. The opportunity to learn key concepts of PNPC and refresh skill sets ranked as the top facilitators, while the top barriers were the lack of opportunity to use PNPC principles and the lack of funding. Conclusion: Learning transfer after a virtual training course of PNPC proved to be successful, with a high rate of self-reported actual implementation and competence at 6 months after the training.

12.
Palliat Med ; 37(9): 1379-1388, 2023 10.
Article in English | MEDLINE | ID: mdl-37132995

ABSTRACT

BACKGROUND: Despite the diagnosis of life-limiting foetal conditions, some mothers choose to continue their pregnancies. The experiences of these individuals are relatively unknown, making it difficult for perinatal palliative services to be targeted towards their needs. AIM: To examine maternal experiences in perinatal palliative care among those who choose to continue their pregnancies despite life-limiting foetal condition. DESIGN: Qualitative, retrospective study involving semi-structured interviews. Braun & Clarke's reflexive thematic analyses using a constructionist-interpretive approach were conducted. SETTING/PARTICIPANTS: A total of 15 adult women participants who decided to continue their pregnancies after learning of life-limiting foetal diagnoses were recruited from a Singaporean tertiary hospital. Interviews were conducted in-person or via video conferencing. RESULTS: Seven themes were synthesized from the data: (1) Internal upheaval - 'World turns upside down'; (2) Role of religion and spirituality in hope of miracles; (3) Support from family and close friends; (4) Navigating a fragmented healthcare system; (5) Value added by the perinatal palliative service; (6) Goodbye and grieving and (7) No regrets and other personal reflections. CONCLUSIONS: Continuing a pregnancy despite the diagnosis of a life-limiting foetal condition can be challenging for mothers. To better meet their needs during this difficult period, perinatal palliative care must be patient-centred, multidisciplinary and non-judgmental. Efforts must be made to streamline the healthcare delivery process.


Subject(s)
Family , Palliative Care , Adult , Pregnancy , Female , Humans , Retrospective Studies , Prenatal Diagnosis , Qualitative Research
13.
Semin Fetal Neonatal Med ; 28(3): 101444, 2023 06.
Article in English | MEDLINE | ID: mdl-37150640

ABSTRACT

Severe intracranial hemorrhages are not rare in extremely preterm infants. They occur early, generally when babies require life-sustaining interventions. This may lead to ethical discussions and decision-making about levels of care. Prognosis is variable and depends on the extent, location, and laterality of the lesions, and, importantly also on the subsequent occurrence of other clinical complications or progressive ventricular dilatation. Decision-making should depend on prognosis and parental values. This article will review prognosis and the uncertainty of outcomes for different lesions and provide an outline of ways to conduct an ethically appropriate discussion on the decision of whether to continue life sustaining therapy. It is possible to communicate in a compassionate and honest way with parents and engage in decision-making, focussing on personalized information and decisions, and on function, as opposed to diagnosis.


Subject(s)
Infant, Extremely Premature , Withholding Treatment , Humans , Infant, Newborn , Parents , Communication , Hemorrhage , Decision Making
14.
Indian J Crit Care Med ; 27(5): 374-376, 2023 May.
Article in English | MEDLINE | ID: mdl-37214121

ABSTRACT

Recent amendments to the onerous legal procedure laid down in the Landmark Supreme Court Judgment Common Cause vs The Union of India have aroused widespread interest. The new procedural guidelines of January 2023 appear workable and should ease ethical decision-making toward the end-of-life in India. This commentary provides the backdrop to the evolution of legal provisions for advance directives, withdrawal, and withholding decisions in terminal care. How to cite this article: Mani RK, Simha S, Gursahani R. Simplified Legal Procedure for End-of-life Decisions in India: A New Dawn in the Care of the Dying? Indian J Crit Care Med 2023;27(5):374-376.

15.
Front Hum Neurosci ; 17: 1128656, 2023.
Article in English | MEDLINE | ID: mdl-37063099

ABSTRACT

Background: Patients with severe acute brain injuries (SABI) are at risk of living with long-term disability, frequent medical complications and high rates of mortality. Determining an individual patient's prognosis and conveying this to family members/caregivers can be challenging. We conducted a webinar with experts in neurosurgery, neurocritical care, neuro-palliative care, neuro-ethics, and rehabilitation as part of the Curing Coma Campaign, which is supported by the Neurocritical Care Society. The webinar discussed topics focused on prognostic uncertainty, communicating prognosis to family members/caregivers, gaps within healthcare systems, and research infrastructure as it relates to patients experiencing SABI. The purpose of this manuscript is to describe the themes that emerged from this virtual discussion. Methods: A qualitative analysis of a webinar "Prognostic Humility and Ethical Dilemmas in Acute Brain Injury" was organized as part of the Neurocritical Care Society's Curing Coma Campaign. A multidisciplinary group of experts was invited as speakers and moderators of the webinar. The content of the webinar was transcribed verbatim. Two qualitative researchers (NK and BM) read and re-read the transcription, and familiarized themselves with the text. The two coders developed and agreed on a code book, independently coded the transcript, and discussed any discrepancies. The transcript was analyzed using inductive thematic analysis of codes and themes that emerged within the expert discussion. Results: We coded 168 qualitative excerpts within the transcript. Two main themes were discussed: (1) the concept of prognostic uncertainty in the acute setting, and (2) lack of access to and evidence for quality rehabilitation and specialized continuum of care efforts specific to coma research. Within these two main themes, we found 5 sub-themes, which were broken down into 23 unique codes. The most frequently described code was the need for clinicians to acknowledge our own uncertainties when we discuss prognosis with families, which was mentioned 13 times during the webinar. Several strategies were described for speaking with surrogates of patients who have had a severe brain injury resulting in SABI. We also identified important gaps in the United States health system and in research to improve the care of patients with severe brain injuries. Conclusion: As a result of this webinar and expert discussion, authors identified and analyzed themes related to prognostic uncertainty with SABI. Recommendations were outlined for clinicians who engage with surrogates of patients with SABI to foster informed decisions for their loved one. Finally, recommendations for changes in healthcare systems and research support are provided in order to continue to propel SABI science forward to improve future prognostic certainty.

16.
Cardiol Young ; 33(12): 2553-2558, 2023 Dec.
Article in English | MEDLINE | ID: mdl-37009758

ABSTRACT

AIM: To investigate the opinion and personal experience of parents of children born with Hypoplastic Left Heart Syndrome and what advice they would give to other parents who have to decide between treatment options. METHODS: We conducted a qualitative, descriptive and retrospective study by means of a survey directed to parents of children born with Hypoplastic Left Heart Syndrome in a tertiary hospital in Buenos Aires (Argentina). Their answers and data regarding medical procedures were analysed. RESULTS: Parents of thirteen out of sixteen patients with Hypoplastic Left Heart Syndrome were surveyed. Norwood surgery had been performed in all the patients, many had received other procedures, and five had died. In relation to the decision-making process, sixty-one percent of parents would recommend other parents to remain at peace after having done everything possible and 54% would suggest to not feel guilt despite the final result. None of the parents would recommend rejecting surgical treatment and choosing comfort care. CONCLUSION: The majority of parents of children with Hypoplastic Left Heart Syndrome would recommend continuing with the therapeutic effort in order to feel at peace and reduce feelings of guilt.


Subject(s)
Hypoplastic Left Heart Syndrome , Norwood Procedures , Child , Humans , Hypoplastic Left Heart Syndrome/surgery , Retrospective Studies , Parents , Emotions
17.
Syst Rev ; 12(1): 33, 2023 03 06.
Article in English | MEDLINE | ID: mdl-36879339

ABSTRACT

BACKGROUND: Comfort is a primary patient objective and central to patient experience, and thus, maximising comfort is a universal goal for healthcare. However, comfort is a complex concept that is difficult to operationalise and evaluate, resulting in a lack of scientific and standardised comfort care practices. The Comfort Theory developed by Kolcaba has been the most widely known for its systematisation and projection and most of the global publications regarding comfort care were based on this theory. To develop international guidance on theory-informed comfort care, a better understanding about the evidence on the effects of interventions guided by the Comfort Theory is needed. OBJECTIVES: To map and present the available evidence on the effects of interventions underpinned by Kolcaba's Comfort theory in healthcare settings. METHODS: The mapping review will follow Campbell Evidence and Gap Maps guideline and Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews Protocols guidelines. An intervention-outcome framework has been developed based on Comfort Theory and the classification of pharmacological and non-pharmacological interventions via consultation with stakeholders. Eleven electronic databases (MEDLINE, CINAHL, PsycINFO, Embase, AMED, Cochrane Library, JBI Library of Systematic Reviews, Web of Science, Scopus, CNKI and Wan Fang) and grey literature sources (Google Scholar, Baidu Scholar and The Comfort Line) will be searched for primary studies and systematic reviews between 1991 and 2023 written in English and Chinese as the papers regarding Comfort Theory were first published in 1991. Additional studies will be identified by reference list review of included studies. Key authors will be contacted for unpublished or ongoing studies. Two independent reviewers will screen and extract data using piloted forms with discrepancies resolved by discussion with a third reviewer. A matrix map with filters of study characteristics will be generated and presented through software of EPPI-Mapper and NVivo. DISCUSSION: More informed use of theory can strengthen improvement programmes and facilitate the evaluation of their effectiveness. Findings from the evidence and gap map will present the existing evidence base for researchers, practitioners and policy-makers and inform further research as well as clinical practices aiming at patients' comfort enhancement.


Subject(s)
Quality Assurance, Health Care , Adult , Humans , Databases, Factual , Treatment Outcome
18.
Front Pediatr ; 11: 1122188, 2023.
Article in English | MEDLINE | ID: mdl-36925670

ABSTRACT

Background: Critical decision making in surgical necrotizing enterocolitis (NEC) is highly complex and hard to capture in decision rules due to case-specificity and high mortality risk. In this choice experiment, we aimed to identify the implicit weight of decision factors towards future decision support, and to assess potential differences between specialties or centers. Methods: Thirty-five hypothetical surgical NEC scenarios with different factor levels were evaluated by neonatal care experts of all Dutch neonatal care centers in an online environment, where a recommendation for surgery or comfort care was requested. We conducted choice analysis by constructing a binary logistic regression model according to behavioral artificial intelligence technology (BAIT). Results: Out of 109 invited neonatal care experts, 62 (57%) participated, including 45 neonatologists, 16 pediatric surgeons and one neonatology physician assistant. Cerebral ultrasound (Relative importance = 20%, OR = 4.06, 95% CI = 3.39-4.86) was the most important factor in the decision surgery versus comfort care in surgical NEC, nationwide and for all specialties and centers. Pediatric surgeons more often recommended surgery compared to neonatologists (62% vs. 57%, p = 0.03). For all centers, cerebral ultrasound, congenital comorbidity, hemodynamics and parental preferences were significant decision factors (p < 0.05). Sex (p = 0.14), growth since birth (p = 0.25), and estimated parental capacities (p = 0.06) had no significance in nationwide nor subgroup analyses. Conclusion: We demonstrated how BAIT can analyze the implicit weight of factors in the complex and critical decision for surgery or comfort care for (surgical) NEC. The findings reflect Dutch expertise, but the technique can be expanded internationally. After validation, our choice model/BAIT may function as decision aid.

19.
Anaesth Crit Care Pain Med ; 42(4): 101216, 2023 08.
Article in English | MEDLINE | ID: mdl-36933797

ABSTRACT

Most hospitalized patients die following a decision to forgo life-sustaining treatment and/or focus on comfort care. Since "Do not kill" is a general ethical norm, many healthcare professionals (HCPs) are uncertain or troubled by such decisions. We propose an ethical framework to help clinicians to understand better their own ethical perspectives about four end-of-life practices: lethal injections, the withdrawal of life-sustaining therapies, the withholding of life-sustaining therapies, and the injection of sedatives and/or analgesics for comfort care. This framework identifies three broad ethical perspectives that may permit HCPs to examine their own attitudes and intentions. According to moral perspective A (absolutist), it is never morally permissible to be causally involved in the occurrence of death. According to moral perspective B (agential), it may be morally permissible to be causally involved in the occurrence of death, if HCPs do not have the intention to terminate the patient's life and if, among other conditions, they ensure respect for the person. Three of the four end-of-life practices, but not lethal injection, may be morally permitted. According to moral perspective C (consequentialist), all four end-of-life practices may be morally permissible if, among other conditions, respect for persons is ensured, even if one intends to hasten the dying process. This structured ethical framework may help to mitigate moral distress among HCPs by helping them to understand better their own fundamental ethical perspectives, as well as those of their patients and colleagues.


Subject(s)
Health Personnel , Palliative Care , Terminal Care , Humans , Death , Terminal Care/ethics , Palliative Care/ethics , Withholding Treatment/ethics , Morals , Ethics
20.
Palliat Med ; 37(1): 108-119, 2023 01.
Article in English | MEDLINE | ID: mdl-36226676

ABSTRACT

BACKGROUND: The efficacy of various massage doses in palliative cancer care settings is still debated, and no specific protocol is available. AIM: Evaluating response to various massage doses for symptom cluster of pain-fatigue-sleep. DESIGN: A 7-arm randomized-controlled trial with weekly massage for 4 weeks depending on the prescribed dose (15-, 30-, or 60-min; 2× or 3×/week) and a 4-week follow-up. The intensities of pain, fatigue, and sleep disturbance were measured using a 0-10 scale at nine-timepoint; baseline, weekly during the intervention, and the follow-up period. Then, the mean scores of the three symptoms were calculated as the symptom cluster intensity at each timepoint. IRCT.ir IRCT20150302021307N5. SETTING/PARTICIPANTS: Adults with cancer (n = 273) who reported all three symptoms at three oncology centers in Iran. RESULTS: The odds of clinical improvement (at least 30% reduction in symptom cluster intensity from baseline) increased with dose-escalation significantly [(OR = 17.37; 95% CI = 3.87-77.90 for 60-min doses); (OR = 11.71; 95% CI = 2.60-52.69, for 30-min doses); (OR = 4.36; 95% CI = 0.94-20.32, for 15-min doses)]. The effect durability was significantly shorter at 15-min doses compared to 30- and 60-min doses. The odds of improvement for doses 3×/week was not significant compared to doses 2×/week (OR = 12.27 vs OR = 8.34); however, the effect durability for doses 3×/week was significantly higher. CONCLUSIONS: The findings indicated that dose-escalation increases the efficacy of massage for the pain-fatigue-sleep symptom cluster. Although the 60-min doses were found to be more effective, the 30-min doses can be considered more practical because they are less costly and time-consuming. Our findings can be helpful to develop massage guidelines in palliative care settings. TRIAL REGISTRATION: Iranian Registry of Clinical Trials, IRCT20150302021307N5.


Subject(s)
Neoplasms , Sleep Wake Disorders , Adult , Humans , Syndrome , Iran , Pain/etiology , Massage/methods , Palliative Care , Fatigue/etiology , Fatigue/therapy , Sleep Wake Disorders/etiology , Sleep Wake Disorders/therapy , Sleep , Neoplasms/complications
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