Emergency medical services providers' perspective of end‐of‐life decision making for people with intellectual disabilities

McGinley, Jacqueline M; Waldrop, Deborah P.; Clemency, Brian M.

doi:10.1111/jar.12363

Cited by 15 publications

(33 citation statements)

References 26 publications

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“…It is also possible a RP may have been established in the home by community healthcare professionals (e.g., community nurses or general practitioners) and these had not been communicated back to the hospital. Despite this finding, it is important to develop a RP when home care is being provided, as families may still utilize emergency medical services for various reasons when receiving care at home [ 21 , 22 ].…”

Section: Discussionmentioning

confidence: 99%

“…RPs were not filed in a consistent place in the current study. The inclusion in this study of a large number of patients who died at home has highlighted the role of the RP as a tool, which can communicate the patients’ and parents’ wishes to a variety of service providers [ 21 , 22 ]. The number of clinicians parents encounter during an acute admission to hospital can be overwhelming [ 11 ].…”

Section: Discussionmentioning

confidence: 99%

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A Retrospective Review of Resuscitation Planning at a Children’s Hospital

et al. 2018

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Resuscitation plans (RP) are an important clinical indicator relating to care at the end of life in paediatrics. A retrospective review of the medical records of children who had been referred to the Royal Children’s Hospital, Brisbane, Australia who died in the calendar year 2011 was performed. Of 62 records available, 40 patients (65%) had a life limiting condition and 43 medical records (69%) contained a documented RP. This study demonstrated that both the underlying condition (life-limiting or life-threatening) and the setting of care (Pediatric Intensive Care Unit or home) influenced the development of resuscitation plans. Patients referred to the paediatric palliative care (PPC) service had a significantly longer time interval from documentation of a resuscitation plan to death and were more likely to die at home. All of the patients who died in the paediatric intensive care unit (PICU) had a RP that was documented within the last 48 h of life. Most RPs were not easy to locate. Documentation of discussions related to resuscitation planning should accommodate patient and family centered care based on individual needs. With varied diagnoses and settings of care, it is important that there is inter-professional collaboration, particularly involving PICU and PPC services, in developing protocols of how to manage this difficult but inevitable clinical scenario.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

A Retrospective Review of Resuscitation Planning at a Children’s Hospital

et al. 2018

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“…The issue features a number of studies using various qualitative methodologies to understand the experience of people with intellectual disability and their supporters, as might be expected in a developing field of research. There are also several mixed methods studies (Forrester-Jones et al, 2017;Grindrod & Rumbold, 2017;McGinley et al, 2017;Tuffrey-Wijne et al, 2017) and one quantitative paper (Stancliffe et al, 2017).…”

Section: Research Methodologiesmentioning

confidence: 99%

“…Studies in the special issue include participants from the following groups: adults with intellectual disability, family carers, disability staff and ambulance paramedics. Importantly, there are papers that, for the first time, focus on the role of professional groups such as clinical psychologists (Irwin, O'Malley, Neelofur, & Guerin, ) and ambulance paramedics—referred to as emergency medical services (EMS) providers—(McGinley, Waldrop, & Clemency, ). However, as we propose later in this editorial, there are other voices not yet included that could further enrich our understanding of the topic.…”

Section: Whose Voices Are Represented?mentioning

confidence: 99%

End of life and people with intellectual disability

Stancliffe

Wiese

Read

2017

Research Intellect Disabil

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“…There are numerous reports on ethical issues concerning withholding cardiopulmonary resuscitation (CPR) [7–10], but studies on limitation of care orders (LCO) beyond ‘do not attempt resuscitation’ (DNAR) are scarce, especially in the prehospital setting [11–13]. As far as we know, there are only a few studies on prehospital providers’ end-of-life decision-making in HCFs and NHs [14, 15]. Here we describe the HEMS physicians’ experiences with the LCOs they make in HCFs, NHs, and prehospital settings.…”

Section: Introductionmentioning

confidence: 99%

Limitation of treatment in prehospital care – the experiences of helicopter emergency medical service physicians in a nationwide multicentre survey

Kangasniemi

Setälä

Huhtala

et al. 2019

Scand J Trauma Resusc Emerg Med

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Background Making ethically sound treatment limitations in prehospital care is a complex topic. Helicopter Emergency Medical Service (HEMS) physicians were surveyed on their experiences with limitations of care orders in the prehospital setting, including situations where they are dispatched to healthcare facilities or nursing homes. Methods A nationwide multicentre study was conducted among all HEMS physicians in Finland in 2017 using a questionnaire with closed five-point Likert-scale questions and open questions. The Ethics Committee of the Tampere University Hospital approved the study protocol (R15048). Results Fifty-nine (88%) physicians responded. Their median age was 43 (IQR 38–47) and median medical working experience was 15 (IQR 10–20) years. All respondents made limitation of care orders and 39% made them often. Three fourths (75%) of the physicians were often dispatched to healthcare facilities and nursing homes and the majority (93%) regularly met patients who should have already had a valid limitation of care order. Every other physician (49%) had sometimes decided not to implement a medically justifiable limitation of care order because they wanted to avoid conflicts with the patient and/or the next of kin and/or other healthcare staff. Limitation of care order practices varied between the respondents, but neither age nor working experience explained these differences in answers. Most physicians (85%) stated that limitations of care orders are part of their work and 81% did not find them especially burdensome. The most challenging patient groups for treatment limitations were the under-aged patients, the severely disabled patients and the patients in healthcare facilities or residing in nursing homes. Conclusion Making limitation of care orders is an important but often invisible part of a HEMS physician’s work. HEMS physicians expressed that patients in long-term care were often without limitations of care orders in situations where an order would have been ethically in accordance with the patient’s best interests.

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Emergency medical services providers' perspective of end‐of‐life decision making for people with intellectual disabilities

Abstract: Multiple contexts influence how wishes are documented and care provided to people with intellectual disabilities near life's end.

Cited by 15 publications

References 26 publications

A Retrospective Review of Resuscitation Planning at a Children’s Hospital

A Retrospective Review of Resuscitation Planning at a Children’s Hospital

End of life and people with intellectual disability

Limitation of treatment in prehospital care – the experiences of helicopter emergency medical service physicians in a nationwide multicentre survey

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