Muslim perspectives on palliative care in perinatal and neonatal patients: a mini-review
Infant, Newborn; Palliative Care; neonatal; perinatal; palliative; withdrawal; Dnr; end-of life; islam; muslim
Muslims comprise nearly a quarter of the worldwide population, with significant populations in the United States, Canada, and Europe. As clinicians, it is important to be familiar with Islamic religious and cultural perspectives on medical treatment, life-prolonging measures and comfort and palliative care, but historically, this has been a gap in the literature. Recently, there have been multiple papers discussing Islamic bioethics, particularly in regards to end of life care in adults; however, there has been a lack of literature discussing the Islamic perspective on issues related to neonatal and perinatal end of life care. This paper uses clinical scenarios to review key relevant principles of Islamic law, discussing the primary and secondary sources used in formulating fatawa, including the Quran, hadith, qiyas, and 'urf, and the importance of preservation of life and upholding of human dignity (karamah). Neonatal and perinatal scenarios are used to specifically explore the Islamic perspective on withholding and withdrawal of life-sustaining measures and determining what constitutes an acceptable quality of life. In some Islamic cultures the expertise of the patient's physician is given significant weight in making these judgments, and as such, families may appreciate frank assessment of the situation by the clinical team. Because of the various factors involved in issuing religious ruling, or fatwa, there is a wide spectrum of opinions on these rulings, and physicians should be aware of these differences, seek counsel and guidance from local Islamic leaders, and support families in their decision-making process.
Shoaib AB; Vawter-Lee M; Venkatesan C; Soliman AF
Frontiers in Pediatrics
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.3389/fped.2023.1204941" target="_blank" rel="noreferrer noopener">10.3389/fped.2023.1204941</a>
Provider Perceptions for Withdrawing Life Sustaining Therapies at a Large Pediatric Hospital
child; human; female; male; article; perception; software; qualitative; health; hospital; life; analysis; therapy; practice; treatment; quality; study; erratum; clinical; withdrawal; drug; pediatric; neonatal; experiment; palliative; care; intensive; major; unit; sustaining; quantitative; guideline; coronary; data
Context: More than 74% of pediatric deaths occur in an intensive care unit (ICU), with 40% occurring after withdrawal of life-sustaining therapies (WOLST). No needs assessment has described provider needs or suggestions for improving the WOLST process in pediatrics.
Sawyer K E; Carpenter AT; Coleman RD; Tume SC; Crawford CA; Casas JA
Journal of Pain and Symptom Management
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jpainsymman.2022.05.009" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2022.05.009</a>
End-of-life issues in the paediatric intensive care unit
end-of-life; life-sustaining therapy; paediatric intensive care; palliative; withdrawal
Recent changes in paediatrics with the growing provision of life-sustaining interventions in both complex and rare diseases have increased the prevalence of chronic and life-limiting conditions in children. This has, in turn, led to changes in the population of children cared for and, consequently, the modes of death in paediatric intensive care units. In many countries, children with chronic conditions now constitute a large proportion of both admissions to paediatric intensive care units and the deaths occurring there. Managing end-of-life decisions and care is an integral part of practice and constitutes an imperative skill for all professionals working in paediatric intensive care. The process of end-of-life care involves many uncertainties and ethical, legal, religious, cultural and social considerations. A child's death will always be a tragic and challenging experience, but the way it is managed can influence the impact it has on everyone involved. This article provides a review of the issues surrounding the end-of-life process for patients in paediatric intensive care units and explores the challenges and considerations involved in decision-making to withhold or withdraw life-sustaining therapy. We discuss the practicalities of managing and optimising end-of-life care within and beyond the paediatric intensive care unit and the different aspects that healthcare teams need to address before and after a child's death. Copyright © 2021 Elsevier Ltd
Medani S; Brierley J
Paediatrics and Child Health
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.paed.2021.03.004" target="_blank" rel="noreferrer noopener">10.1016/j.paed.2021.03.004</a>
End-of-life care in a pediatric intensive care unit: The impact of the development of a palliative care unit
palliative care; pediatric intensive care unit; hospital mortality; withholding treatment; withdrawal
Background: The purpose of this paper is to describe how end-of-life care is managed when life-support limitation is decided in a Pediatric Intensive Care Unit and to analyze the influence of the further development of the Palliative Care Unit. Method(s): A 15-year retrospective study of children who died after life-support limitation was initiated in a pediatric intensive care unit. Patients were divided into two groups, pre- and post-palliative care unit development. Epidemiological and clinical data, the decision-making process, and the approach were analyzed. Data was obtained from patient medical records. Result(s): One hundred seventy-five patients were included. The main reason for admission was respiratory failure (86/175). A previous pathology was present in 152 patients (61/152 were neurological issues). The medical team and family participated together in the decision-making in 145 cases (82.8%). The family made the request in 10 cases (9 vs. 1, p = 0.019). Withdrawal was the main life-support limitation (113/175), followed by withholding life-sustaining treatments (37/175). Withdrawal was more frequent in the post-palliative group (57.4% vs. 74.3%, p = 0.031). In absolute numbers, respiratory support was the main type of support withdrawn. Conclusion(s): The main cause of life-support limitation was the unfavourable evolution of the underlying pathology. Families were involved in the decision-making process in a high percentage of the cases. The development of the Palliative Care Unit changed life-support limitation in our unit, with differences detected in the type of patient and in the strategy used. Increased confidence among intensivists when providing end-of-life care, and the availability of a Palliative Care Unit may contribute to improvements in the quality of end-of-life care. Copyright © 2020 The Author(s).
Bobillo-Perez S; Segura S; Girona-Alarcon M; Felipe A; Balaguer M; Hernandez-Platero L; Sole-Ribalta A; Guitart C; Jordan I; Cambra F J
BMC Palliative Care
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1186/s12904-020-00575-4" target="_blank" rel="noreferrer noopener">10.1186/s12904-020-00575-4</a>
Compassionate Extubation For A Peaceful Death In The Setting Of A Community Hospital: A Case-series Study
Geriatrics & Gerontology; Life; Quality Of Death; Withdrawal; Intensive-care-unit; Palliative Care; Palliative Extubation; Good Death; Mechanical Ventilation; Support; End; Compassionate Extubation; Euthanasia; Hospice Care; Murder; Terminal Care/methods; Airway Extubation - Methods; Hospitals; Community - Organization & Administration; Geriatrics; Compassionate Extubation; Rc952-954.6
Compassionate Extubation; Palliative Extubation; Good Death; Hospice Care; Quality Of Death
Background
The use of compassionate extubation (CE) to alleviate suffering by terminating mechanical ventilation and withdrawing the endotracheal tube requires professional adherence and efficiency. The Hospice Palliative Care Act, amended on January 9, 2013, legalizes the CE procedure in Taiwan.
Methods
From September 20, 2013 to September 2, 2014, the hospice palliative care team at a community hospital received 20 consultations for CE. Eight cases were excluded because of non-qualification. Following approval from the Ethics Committee, the medical records of the remaining 12 patients were reviewed and grouped by the underlying disease: A, “terminal-stage cancer”; B, “non-cancer out-of-hospital cardiac arrest”; and C, “non-cancer organ failure”. Time to extubation using a cut-off at 48 hours was assessed.
Results
The mean ages of patients (standard deviation) in groups A, B, and C were 66.3 (14.9) years, 72 (19.1) years, and 80.3 (4.0) years, respectively. The mean number of days of intubation at consultation were 6.8 (4.9), 7.3 (4.9), and 179.3 (271.6), respectively. The mean total doses of opioids (as morphine-equivalent dose) in the 24 hours preceding CE were 76 (87.5) mg, 3.3 (5.8) mg, and 43.3 (15.3) mg. The median times from extubation (range) to death were 97 (0.2–245) hours, 0.3 (0.2–0.4) hours, and 6.1 (3.6–71.8) hours. Compared to those requiring <48-hour preparatory time, patients requiring >48 hours to the moment of CE were younger (62.8 years vs 75.5 years), required a mean time of 122 hours (vs 30 hours) to CE (P=0.004), had shorter length of stay (33.3 days vs 77.8 days), required specialist social worker intervention in 75% of cases (vs 37.5%), and had a median duration of intubation of 11.5 days (vs 5.5 days).
Conclusion
CE was carried out according to protocol, and the median time from extubation to death varies determined by the underlying disease which was 0.3 hour in patients admitted after out-of-hospital cardiac arrest and 97 hours in patients with advanced cancer.
Victor C Kok
Clinical Interventions In Aging
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
A Descriptive Report Of End-of-life Care Practices Occurring In Two Neonatal Intensive Care Units
Death; Decision Making; Withdrawal; Patterns; Perspectives; Nicu; Infant; Neonatal; Newborns; Support Implementation; End Of Life Care; Public Environmental & Occupational Health; Palliative Care; Medicine General & Internal; Health Care Sciences & Services; Neonatal Intensive Care Unit; Palliative Care; Anesthesia; Analgesics; Intensive Care
Death; End Of Life; Neonatal; Neonatal Intensive Care Unit; Palliative Care
BACKGROUND:
In Canada and other developed countries, the majority of neonatal deaths occur in tertiary neonatal intensive care units. Most deaths occur following the withdrawal of life-sustaining treatments.
AIM:
To explore neonatal death events and end-of-life care practices in two tertiary neonatal intensive care settings.
DESIGN:
A structured, retrospective, cohort study.
SETTING/PARTICIPANTS:
All infants who died under tertiary neonatal intensive care from January 2009 to December 2013 in a regional Canadian neonatal program. Deaths occurring outside the neonatal intensive care unit in delivery rooms, hospital wards, or family homes were not included. Overall, 227 infant deaths were identified.
RESULTS:
The most common reasons for admission included prematurity (53.7%), prematurity with congenital anomaly/syndrome (20.3%), term congenital anomaly (11.5%), and hypoxic ischemic encephalopathy (12.3%). The median age at death was 7 days. Death tended to follow a decision to withdraw life-sustaining treatment with anticipated poor developmental outcome or perceived quality of life, or in the context of a moribund dying infant. Time to death after withdrawal of life-sustaining treatment was uncommonly a protracted event but did vary widely. Most dying infants were held by family members in the neonatal intensive care unit or in a parent room off cardiorespiratory monitors. Analgesic and sedative medications were variably given and not associated with a hastening of death.
CONCLUSION:
Variability exists in end-of-life care practices such as provision of analgesic and sedative medications. Other practices such as discontinuation of cardiorespiratory monitors and use of parent rooms are more uniform. More research is needed to understand variation in neonatal end-of-life care.
Lam V; Kain N; Joynt C; van Manen MA
Journal Of Palliative Medicine
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
DOI: 10.1177/0269216316634246