scholarly journals The Importance of Parental Connectedness and Relationships With Healthcare Professionals in End-of-Life Care in the PICU*

2018 ◽  
Vol 19 (3) ◽  
pp. e157-e163 ◽  
Author(s):  
Jeannette L. Falkenburg ◽  
Dick Tibboel ◽  
Ruard R. Ganzevoort ◽  
Saskia J. Gischler ◽  
Monique van Dijk
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Healthcare Professionals ◽  
Life Care ◽  
Parental Connectedness

scholarly journals Ethical considerations at the end-of-life care

2021 ◽  
Vol 9 ◽  
pp. 205031212110009
Author(s):  
Melahat Akdeniz ◽  
Bülent Yardımcı ◽  
Ethem Kavukcu
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Assisted Suicide ◽  
Healthcare Professionals ◽  
Ethical Decision Making ◽  
Biomedical Ethics ◽  
Artificial Nutrition ◽  
Life Care ◽  
Ethical Challenges ◽  
Physician Assisted Suicide

The goal of end-of-life care for dying patients is to prevent or relieve suffering as much as possible while respecting the patients’ desires. However, physicians face many ethical challenges in end-of-life care. Since the decisions to be made may concern patients’ family members and society as well as the patients, it is important to protect the rights, dignity, and vigor of all parties involved in the clinical ethical decision-making process. Understanding the principles underlying biomedical ethics is important for physicians to solve the problems they face in end-of-life care. The main situations that create ethical difficulties for healthcare professionals are the decisions regarding resuscitation, mechanical ventilation, artificial nutrition and hydration, terminal sedation, withholding and withdrawing treatments, euthanasia, and physician-assisted suicide. Five ethical principles guide healthcare professionals in the management of these situations.

Healthcare professionals’ perspectives on delivering end-of-life care within acute hospital trusts: a qualitative study

2013 ◽  
Vol 5 (5) ◽  
pp. 490-495 ◽  
Author(s):  
Colette Reid ◽  
Jane Gibbins ◽  
Sophia Bloor ◽  
Melanie Burcombe ◽  
Rachel McCoubrie ◽  
...  
Keyword(s):  
Qualitative Study ◽  
End Of Life ◽  
End Of Life Care ◽  
Healthcare Professionals ◽  
Acute Hospital ◽  
Life Care

scholarly journals ‘It’s a hard conversation to have’. Healthcare professionals’ views concerning advance care discussions with young people affected by life-limiting neuromuscular diseases: an interview study

2017 ◽  
Vol 9 (1) ◽  
pp. e9-e9
Author(s):  
Andy Hiscock ◽  
Stephen Barclay
Keyword(s):  
Young People ◽  
End Of Life ◽  
End Of Life Care ◽  
Healthcare Professionals ◽  
Neuromuscular Diseases ◽  
Individual Case ◽  
Life Care ◽  
Care Plans ◽  
Advance Care ◽  
The Uk

ObjectiveLife-limiting neuromuscular disease, such as some of the muscular dystrophies, are often diagnosed in early childhood: when death comes, commonly in the second or third decade of life, patients rarely have advance care plans in place or documented end-of-life care preferences. There is very limited literature concerning the discussions about end-of-life plans healthcare professionals have with young people affected by life-limiting neuromuscular diseases. The aim of this study was to investigate the views and experiences of healthcare professionals concerning having discussions about advance care plans and end-of-life care with teenagers and young adult patients affected by life-limiting neuromuscular diseases.MethodsSemistructured interviews with a maximum variety sample of nine professionals involved in the care of young people with life-limiting neuromuscular diseases in one region of the UK.ResultsWhile recognising the inevitable progression of the conditions, there was no consensus among interviewees concerning best approaches to discuss end-of-life care plans. Several environmental and personal barriers were identified that lead to avoidance of the emotionally challenging and difficult conversations.ConclusionsCommunity-based professionals with well-established relationships with patients and families may be best placed to take the lead and coordinate discussions, but individual case-by-case preferences need to be carefully considered.

scholarly journals Parental experiences of end of life care decision-making for children with life-limiting conditions in the paediatric intensive care unit: a qualitative interview study

BMJ Open ◽  
2019 ◽  
Vol 9 (5) ◽  
pp. e028548 ◽  
Author(s):  
Sarah Mitchell ◽  
Jenna L Spry ◽  
Emma Hill ◽  
Jane Coad ◽  
Jeremy Dale ◽  
...  
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
End Of Life Care ◽  
Healthcare Professionals ◽  
Qualitative Interview ◽  
Life Care ◽  
Parental Experiences ◽  
Qualitative Interview Study ◽  
Life Threatening ◽  
Care Decision

ObjectivesTo provide an in-depth insight into the experience and perceptions of bereaved parents who have experienced end of life care decision-making for children with life-limiting or life-threatening conditions in the paediatric intensive care unit (PICU).DesignAn in-depth qualitative interview study with a sample of parents of children with life-limiting or life-threatening conditions who had died in PICU within the previous 12 months. A thematic analysis was conducted on the interview transcripts.SettingA PICU in a large National Health Service (NHS) tertiary children’s hospital in the West Midlands, UK.Participants17 parents of 11 children who had died in the PICU.ResultsFive interconnected themes were identified related to end of life care decision-making:(1) parents have significant knowledge and experiences that influence the decision-making process.(2) Trusted relationships with healthcare professionals are key to supporting parents making end of life decisions.(3) Verbal and non-verbal communication with healthcare professionals impacts on the family experience.(4) Engaging with end of life care decision-making can be emotionally overwhelming, but becomes possible if parents reach a ‘place of acceptance’.(5) Families perceive benefits to receiving end of life care for their child in a PICU.Conclusions and implicationsThe death of a child is an intensely emotional experience for all involved. This study adds to the limited evidence base related to parental experiences of end of life care decision-making and provides findings that have international relevance, particularly related to place of care and introduction of end of life care discussions. The expertise and previous experience of parents is highly relevant and should be acknowledged. End of life care decision-making is a complex and nuanced process; the information needs and preferences of each family are individual and need to be understood by the professionals involved in their care.

High-quality end of life care for older people with frailty: helping people to live and die well

2020 ◽  
Vol 81 (9) ◽  
pp. 1-3
Author(s):  
Jennifer Beggs ◽  
Celina Handalage ◽  
Alice Jundi ◽  
Eileen Burns
Keyword(s):  
Older People ◽  
End Of Life ◽  
End Of Life Care ◽  
Healthcare Professionals ◽  
Life Care ◽  
Frail Older People ◽  
High Quality ◽  
Practical Advice ◽  
Care For Older People

Guidance from the British Geriatrics Society provides practical advice to support healthcare professionals who are involved in caring for frail, older people in the last phase of life.

End-of-life care in a pandemic: a primary healthcare perspective

2021 ◽  
Vol 3 (4) ◽  
pp. 151-155
Author(s):  
Amanda Armstrong
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Healthcare Professionals ◽  
Life Care ◽  
New Ways Of Working ◽  
North East ◽  
District Nurses ◽  
New Models ◽  
Working Together ◽  
Care And Treatment

Amanda Armstrong, Dr D. Aref, Dr S. Namuq, Riccardo Arduinin, Rebecca Evans, Dr Ajula Gunasekera, Dr K. Hochstein-Mintzel, Dr N Hilton, Kate Larden, Dr Christine Whitlow This article will explore end-of-life care in the COVID-19 pandemic in north east Essex from the perspective of general practice. This article shows the new approaches that have been adopted to support people in the community at the end of life. These new ways of working demonstrated the resilience of healthcare professionals working together with the use of video to ensure that patients received the optimum care and treatment in their home at the end of their lives. It demonstrated that community teams such as district nurses, hospice staff, GPs and the lead nurse for end of life care could implement new ways of working to ensure joined up care and treatment. It also shows new models of working in the future.

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 Dying in times of the coronavirus: An online survey among healthcare professionals about end-of-life care for patients dying with and without COVID-19 (the CO-LIVE study)

2021 ◽  
pp. 026921632110037
Author(s):  
Bregje D Onwuteaka-Philipsen ◽  
H Roeline W Pasman ◽  
Ida J Korfage ◽  
Erica Witkamp ◽  
Masha Zee ◽  
...  
Keyword(s):  
Nursing Home ◽  
Chronic Illness ◽  
Nursing Homes ◽  
The Netherlands ◽  
End Of Life ◽  
End Of Life Care ◽  
Online Survey ◽  
Healthcare Professionals ◽  
Patient Characteristics ◽  
Life Care

Background: During the COVID-19 outbreak restricting measures may have affected the provision of good end-of-life care for patients with and without COVID-19. Aim: To describe characteristics of patients who died and the care they received, and to examine how patient characteristics, setting and visiting restrictions are related to provided care and evaluation of the dying process. Design: An open observational online survey among healthcare professionals about their experience of end-of-life care that was provided to a patient with or without COVID-19 who died between March and July 2020. Setting/participants: Healthcare professionals (nurses, physicians and others) in the Netherlands from all settings: home ( n = 163), hospital ( n = 249), nursing home ( n = 192), hospice ( n = 89) or elsewhere ( n = 68). Results: Of patients reported on, 56% had COVID-19. Among these patients, 358 (84.4%) also had a serious chronic illness. Having COVID-19 was negatively, and having a serious chronic illness was positively associated with healthcare staff’s favourable appreciation of end-of-life care. Often there had been visiting restrictions in the last 2 days of life (75.8%). This was negatively associated with appreciation of care at the end of life and the dying process. Finally, care at the end of life was less favourably appreciated in hospitals and especially nursing homes, and more favourably in home settings and especially hospices. Conclusions: Our study suggests that end-of-life care during the COVID-19 pandemic may be further optimised, especially in nursing homes and hospitals. Allowing at least some level of visits of relatives seems a key component.

scholarly journals Palliative Care With Dementia and Family Caregiver Involvement (A Collaborative Symposium between the Hospice, Palliative, and End-of-Life Care and Nursing Care of Older Adults Interest Groups)

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 786-786
Author(s):  
Jenny van der Steen ◽  
Christopher Johnson ◽  
Sheryl Zimmerman
Keyword(s):  
Palliative Care ◽  
Interest Groups ◽  
End Of Life ◽  
Family Caregivers ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Healthcare Professionals ◽  
Care Planning ◽  
Life Care ◽  
Advance Care

Abstract This collaborative symposium offered by the Hospice, Palliative, and End-of-Life Care and Nursing Care of Older Adults Interest Groups addresses palliative care including advance care planning considerations for family caregivers and persons with dementia. Family caregivers may need information about palliative and end-of-life care that is specific to the person, the situation or the stage of dementia. This symposium shows information needs also differ by country and setting. Conversations about symptoms, and about current and end-of-life treatment preferences need support from healthcare professionals. The symposium shows results of a study on video recordings with end-of-life preferences and how, as a stand-alone, they may not inform palliative care practice, and integration of information sources for advance care planning is needed. We will also show that a question prompt list with examples of questions to encourage family caregivers to ask healthcare professionals can and should have different contents for different countries as the content reflects socio-cultural differences. In more studies, participants clearly neede information on the disease trajectory and available services. Such needs go beyond need for information on pain and other symptoms, as family caregivers often appreciate opportunities for social activities for persons with dementia. A decision aid study shows that persons with dementia and family caregivers can participate in advance care planning conversations when supported by the right tools. We argue that local client participation is important when developing tools. Overall, the symposium highlights the need for tailored tools to support face-to-face conversations with all stakeholders to encourage person-centred caregiving.

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