Paediatric end-of-life care – symptoms and problems: parent assessment

2021 ◽  
pp. bmjspcare-2021-002891
Author(s):  
Camilla Lykke ◽  
Ola Ekholm ◽  
Marianne Olsen ◽  
Per Sjøgren
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Healthcare Services ◽  
Descriptive Statistics ◽  
Fear Of Death ◽  
Time Of Death ◽  
Life Care ◽  
Systematic Screening ◽  
Parent Assessment ◽  
Self Administered Questionnaire

ObjectiveSymptoms and problems (S&P) are under-reported in children in end-of-life care.To target future interventions, the primary aim was to examine S&P in children in end-of-life care.MethodsAll parents, who lost a child under the age of 18 years due to life-limiting diagnoses in the period 2012–2014 in Denmark, were invited to complete a self-administered questionnaire in 2017. In all, 152 (38%) children were represented by 136 mothers and 57 fathers. In the present study, parents’ assessments of S&P during the last month of life were restricted to children aged 3–18 years. Data were analyses by means of descriptive statistics.ResultsChildren ≥3 years at the time of death were represented by 71 parents (48 mothers and 23 fathers) representing 56 out of the 152 children. Physical fatigue (93%), sleepiness (90%), poor appetite (87%), pain (84%) and nausea (84%) were the five most frequent symptoms reported by the parents. In all, 65% of the parents reported that satisfactory pain relief was obtained and 64% of the parents reported that the healthcare services to a large extent reacted quickly, when the child and/or family needed help. However, 46% of the parents experienced ‘mess-ups’ or sloppy services in the primary ward and 27% experienced that the children suffered from fear of death.ConclusionAccording to the parents, children with life-limiting diagnosis are highly symptomatic and have substantial problems during end-of-life care. Our findings indicate that systematic screening of S&P in children should be considered.

scholarly journals The role and response of primary healthcare services in the delivery of palliative care in epidemics and pandemics: A rapid review to inform practice and service delivery during the COVID-19 pandemic

2020 ◽  
Vol 34 (9) ◽  
pp. 1182-1192 ◽  
Author(s):  
Sarah Mitchell ◽  
Victoria Maynard ◽  
Victoria Lyons ◽  
Nicholas Jones ◽  
Clare Gardiner
Keyword(s):  
Systematic Review ◽  
Palliative Care ◽  
Service Delivery ◽  
End Of Life ◽  
Primary Healthcare ◽  
End Of Life Care ◽  
Healthcare Services ◽  
Rapid Review ◽  
Life Care ◽  
Care Providers

Background: The increased number of deaths in the community happening as a result of COVID-19 has caused primary healthcare services to change their traditional service delivery in a short timeframe. Services are quickly adapting to new challenges in the practical delivery of end-of-life care to patients in the community including through virtual consultations and in the provision of timely symptom control. Aim: To synthesise existing evidence related to the delivery of palliative and end-of-life care by primary healthcare professionals in epidemics and pandemics. Design: Rapid systematic review using modified systematic review methods, with narrative synthesis of the evidence. Data sources: Searches were carried out in Medline, Embase, PsychINFO, CINAHL and Web of Science on 7th March 2020. Results: Only five studies met the inclusion criteria, highlighting a striking lack of evidence base for the response of primary healthcare services in palliative care during epidemics and pandemics. All were observational studies. Findings were synthesised using a pandemic response framework according to ‘systems’ (community providers feeling disadvantaged in terms of receiving timely information and protocols), ‘space’ (recognised need for more care in the community), ‘staff’ (training needs and resilience) and ‘stuff’ (other aspects of managing care in pandemics including personal protective equipment, cleaning care settings and access to investigations). Conclusions: As the COVID-19 pandemic progresses, there is an urgent need for research to provide increased understanding of the role of primary care and community nursing services in palliative care, alongside hospices and community specialist palliative care providers.

Abstract 14806: Circumstances Surrounding End of Life in Pediatric Heart Transplant: A Report From the Pediatric Heart Transplant Society

Circulation ◽  
2020 ◽  
Vol 142 (Suppl_3) ◽  
Author(s):  
Melissa K Cousino ◽  
Sunkyung Yu ◽  
Elizabeth Blume ◽  
Heather T Henderson ◽  
Seth Hollander ◽  
...  
Keyword(s):  
Mechanical Ventilation ◽  
End Of Life ◽  
Heart Transplant ◽  
End Of Life Care ◽  
Time Of Death ◽  
Life Care ◽  
Location Of Death ◽  
Technological Interventions ◽  
Family Decision ◽  
Pediatric Heart Transplant

Introduction: The Institute of Medicine called for scientific investigation and the development of guidelines to improve end of life care for pediatric patients with serious illnesses. Despite high morbidity and mortality in pediatric heart transplantation (HTx), research on the end of life care needs of this population is extremely limited. Aims: This study aimed to describe the circumstances surrounding death of pediatric HTx patients and examine associations between location of death and technological interventions at end-of-life with demographic, disease, and HTx-related factors. Methods: This retrospective analysis of the Pediatric Heart Transplant Society registry utilized descriptive statistics and standard univariate analysis to examine associations between location of death and patient factors. Results: Of 9,217 registry entries, 2,804 (30%) deaths occurred; 1,310 while awaiting HTx; 1,494 post-HTx. Location of death was only recorded for 1,113 patients which included 804 waitlist deaths; 89% occurred in the hospital, primarily in ICU settings (74%) with most requiring mechanical ventilation (77%). A subset (39%) were supported by ECMO/VAD at time of death with 69% receiving inotrope support. Location of death was captured for 309 post-HTx patients with only 22% occurring in hospital; primarily in the ICU (74%) with half receiving mechanical ventilation (52%) and a smaller proportion supported by ECMO/VAD (18%) or inotropes (21%) at time of death. Overall, location of death was not associated with patient sex, race, ethnicity, insurance type, or primary etiology. Out of hospital death was associated with older patient age (p<0.01). Family decision to withdraw life-sustaining interventions was included as a contributing cause of death in 5.4% of waitlist cases and 3.5% of post-HTx cases. Conclusions: Death occurred in ~1/3 of patients captured in this pediatric HTx registry. ICU deaths with high use of technological interventions were common, particularly in waitlisted patients, but family decision to discontinue interventions was infrequently cited. Findings underscore the need for palliative care interventions and improved research strategies to better understand end of life in pre- and post-HTx pediatric populations.

Patients' participation in end-of-life care: Relations to different variables as documented in the patients' records

2010 ◽  
Vol 8 (3) ◽  
pp. 247-253 ◽  
Author(s):  
Irma Lindström ◽  
Fannie Gaston-Johansson ◽  
Ella Danielson
Keyword(s):  
Quality Of Care ◽  
End Of Life ◽  
Cognitive Dysfunction ◽  
End Of Life Care ◽  
Healthcare Professionals ◽  
Healthcare Services ◽  
Life Care ◽  
High Quality ◽  
Care And Treatment

AbstractObjective:Patients' participation in care is crucial for assuring patients a high quality of care based on values such as autonomy. The patients are supposed to be actively involved in care and treatment, even though these situations are complex, as in the context of end-of-life-care. The aim in this study was to identify demographic and health-related variables‘ relation to patients’ participation during the last three months in life as documented in patients' records.Method:The population in the present study consists of 229 patients from 49 municipalities in a county in Sweden. Data were collected from all available documentation about deceased patients who were ≥18 years of age at the time of death and who had received healthcare services during the last 3 months of their life.Results:This article demonstrates patients' participation in end-of-life care as it was noted in the patients' documentation. Demographic variables such as age, gender, and residence did not differ between those who participated and those who did not. Patients with dementia and disorientation were separated from those who were not disoriented. There was no information about the wishes of the patients with dementia and disorientation and they were not described as participating in care and treatment. Cognitive intact patients were participating significant more often. These patients had also more symptom describes in the records. These results can indicate that a patient's participation depends upon either the patient's cognitive capability or the healthcare professionals' competence to communicate and provide adequate documentation regarding patients' participation at end-of-life. The documentation about the participation of patients with cognitive dysfunction is poor and needs further investigation, to achieve the goal of dignified end-of-life care for all patients.Significance of results:The results of the presents study call attention to the importance of finding innovative solutions to make patients with cognitive dysfunction involved in their care and treatment at end-of-life. Improvement of documentation showing patients' involvement in care is necessary, as is a discussion of how healthcare professionals can assure patients a high quality of care at end-of-life even if patients voices are not heard.

scholarly journals Quality of Death of Patients With Advanced Cancers in India

2018 ◽  
Vol 4 (Supplement 2) ◽  
pp. 98s-98s
Author(s):  
S. Revathy ◽  
V. Surendran ◽  
G. Prasanth ◽  
B. Kalpana
Keyword(s):  
Quality Of Life ◽  
Physical Health ◽  
End Of Life ◽  
Advanced Cancer ◽  
Thematic Analysis ◽  
End Of Life Care ◽  
Descriptive Statistics ◽  
Life Care ◽  
Quality Of Death

Background: Death with dignity is a basic right of all patients with advanced cancer, whereas in India, the healthcare providers have not closely examined whether the end-of-life care promotes the quality of death. The quality of death analysis can give us an insight on the impact of the disease and palliative treatment on end-of-life care. Aim: This study aims to explore the quality of death of patients with advanced cancers. Methods: A mixed method study where the caregivers (n=108) of advanced cancer patients, who expired either during hospitalization or at home, were chosen through purposive sampling and interviewed to assess the quality of death, using validated caregiver ratings of patients' physical and mental distress on a scale of 0-10, along with an open ended question. The data thus obtained was analyzed using descriptive statistics, t-test and χ2 test. The transcripts and scores were analyzed through thematic analysis and descriptive statistics respectively. Results: The mean quality of life during the final week of the patients who had expired is 4.17 (SD=2.44), while the psychological and physical health are 5.27 (SD= 2.49) and 3.75 (SD= 2.30), respectively. Almost 60% of the patients were reported to have average to good quality of life during their final week, whereas 73.1% and 52.7% of the patients had average to good psychological and physical health respectively. The physical health was found to be significantly higher among men ( P = 0.000) and among those who were aware of their prognosis ( P = 0.000). Also, patients who had expired at the hospital were found to have significantly better physical health during their end-of-life, than those who had expired at home ( P = 0.006 ), whereas, the psychological health and overall quality of life of the patients did not differ significantly between the place of death. The most commonly reported reason by the caregivers for the patients' distress was physical suffering. Pain, lack of appetite, difficulty in breathing and compromised mobility, irrespective of the site, was reported by 41.6%, 38.8%, 25.9% and 27.7% respectively. Majority of the patients (65.7%) were not aware of their prognosis, thus leading to psychological distress pertaining to anticipation about survival and worsening of physical symptoms. Despite the high distress, 60% reportedly had moderate to high quality of life in their last week of life. The thematic analysis of the transcripts resulted in seven subthemes, which were categorized under four major themes namely 'bodily discomfort', 'psychological experiences' with the subthemes moral emotions and emotional disturbances, 'awareness of prognosis' with the subthemes aware, unaware and conjecture and 'carers coping' with the subthemes perceived strain and contentment. Conclusion: Although the quality of life of patients under end of life care was perceived to be good, they suffered physically and psychologically, as reported by the caregivers.

scholarly journals Personal and Emotional Factors of Nursing Professionals Related to Coping with End-of-Life Care: A Cross-Sectional Study

2021 ◽  
Vol 18 (18) ◽  
pp. 9515
Author(s):  
María Povedano-Jiménez ◽  
Carmen Ropero-Padilla ◽  
Miguel Rodriguez-Arrastia ◽  
María Paz García-Caro
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Explanatory Power ◽  
Cross Sectional Study ◽  
Fear Of Death ◽  
Life Care ◽  
Sectional Study ◽  
Cross Sectional ◽  
Anxiety And Fear ◽  
Coping With Death

The death of a patient can be a traumatic event, causing emotional and psychological distress in professional nurses and potentially hampering the quality of their care. Optimal self-perceived coping with death involves valuing these difficult situations as challenges and actively coping with work-related stress during the care of the dying patient. Thus, the aim of this study was to assess Spanish nurses’ self-perceived competence with patient death and investigate its relationship with their personality traits, anxiety and fear of death. A cross-sectional study based on a web-based survey was conducted. A sample of 534 Spanish nurses provided socio-demographic information and answered validated questionnaires. Most participants perceived their coping with death as optimal. Men and nurses older than 31 years coped better with death. Professionals with an optimal self-perception showed significantly lower scores on all personality dimensions evaluated, while a higher level of the anxiety trait predicted worse coping. Although with medium explanatory power, psychoticism, anxiety, and fear of death were the main predictors of the development of optimal coping with death among Spanish nurses. These characteristics together with information from the work environment and evidence-based practice could help to develop better routines and contexts of care for nurses working in end-of-life care.

End-of-life care after the legal introduction of advance directives: A qualitative study involving healthcare professionals and family caregivers of patients with amyotrophic lateral sclerosis

2020 ◽  
pp. 026921632096728
Author(s):  
Sabrina Cipolletta ◽  
Margherita Reggiani
Keyword(s):  
Amyotrophic Lateral Sclerosis ◽  
End Of Life ◽  
Family Caregivers ◽  
Advance Directives ◽  
Health Professionals ◽  
End Of Life Care ◽  
Healthcare Services ◽  
Life Care ◽  
Advance Care ◽  
Lateral Sclerosis

Background: Advance care planning and advance directives play a key role in the care of life-threatening illnesses such as amyotrophic lateral sclerosis. Aim: The aim of the present study is to explore how the introduction of these features by law improves the experience of end-of-life care. Design: Five focus groups were conducted in Italy 1 year after the new law on advance directives was introduced. Setting/Participants: Purposive sampling was used to recruit 24 health professionals and 23 family caregivers of patients with amyotrophic lateral sclerosis, for a total of 47 participants. Results: The thematic analysis, conducted through the use of ATLAS.ti software, identified four thematic areas: best practices, managing difficulties, care relationships and proposals. The results indicated a lack of organization, collaboration and continuity on the part of healthcare services and professionals, a lack of information on palliative care, advance care planning, and advance directives. End-of-life care is often left to the good will of the individual professional. Difficulties can also derive from ethical dilemmas concerning end-of-life decision-making and from a lack of communication and relationships between health professionals, patients and their families. Conclusion: The introduction of advance directives by law has not been sufficient to improve end-of-life care. In order to make legal regulation effective, the organization of healthcare services needs to be improved and clearer procedures have to be implemented and shared with patients and families.

scholarly journals A Population-Based Conceptual Framework for Evaluating the Role of Healthcare Services in Place of Death

Healthcare ◽  
2018 ◽  
Vol 6 (3) ◽  
pp. 107 ◽  
Author(s):  
Wei Gao ◽  
Sumaya Huque ◽  
Myfanwy Morgan ◽  
Irene Higginson
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Healthcare Service ◽  
Healthcare Services ◽  
Population Based ◽  
Place Of Death ◽  
Life Care ◽  
The Impact ◽  
Service Factors

Background: There is a significant geographical disparity in place of death. Socio-demographic and disease-related variables only explain less than a quarter of the variation. Healthcare service factors may account for some (or much) of the remaining variation but their effects have never been systematically evaluated, partly due to the lack of a conceptual framework. This study aims to propose a population-based framework to guide the evaluation of the role of the healthcare service factors in place of death. Methods: Review and synthesis of health service models that include the impact of a service component on either place of death/end of life care outcomes or service access/utilization. Results: The framework conceptualizes the impact of healthcare services on the place of death as starting from the end of life care policies that in turn influence service commissioning and shape healthcare service characteristics, including service type, service capacity—facilities, service location, and workforce, through which service utilization and ultimately place of death are affected. Patient socio-demographics, disease-related variables, family and community support and social care also influence place of death, but they are not the focus of this framework and therefore are grouped as needs and other environmental factors. Information on service utilization, together with the place of death, creates loop feedback to inform policy and service commission. Conclusions: The framework provides guidance for analysis aiming to understand the role of healthcare services in place of death. It aids the interpretation of results in the light of existing knowledge and potentially identifies service factors that can be addressed to improve end of life care.

Dysphagia in Hospice Care: The Roles of Social Work and Speech-Language Pathologists

2014 ◽  
Vol 23 (4) ◽  
pp. 173-186 ◽  
Author(s):  
Deborah Hinson ◽  
Aaron J. Goldsmith ◽  
Joseph Murray
Keyword(s):  
Social Work ◽  
End Of Life ◽  
Case Studies ◽  
End Of Life Care ◽  
Hospice Care ◽  
Patient Communication ◽  
Life Care ◽  
Speech Language Pathologists ◽  
Four Levels

This article addresses the unique roles of social work and speech-language pathologists (SLPs) in end-of-life and hospice care settings. The four levels of hospice care are explained. Suggested social work and SLP interventions for end-of-life nutrition and approaches to patient communication are offered. Case studies are used to illustrate the specialized roles that social work and SLP have in end-of-life care settings.

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