Long‐term percutaneous endoscopic gastrostomy feeding in young adults with multiple disabilities

Lee, Lynette; Macpherson, Mary

doi:10.1111/j.1445-5994.2009.02108.x

Cited by 17 publications

(48 citation statements)

References 16 publications

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“…This perspective was particularly evident in the Netherlands [45], [52], [66] and Belgium [35], [36]. Similarly, for individuals with intellectual disabilities, some parents believed that a PEG tube would increase physical suffering and social stigma [39], [69]. Conversely, a smaller number of US and Canadian studies indicated that some clinicians believed starting artificial nutrition at the end of life could provide freedom from pain and discomfort, as feeding tubes were perceived to increase the ease of feeding and administering medicines [40], [76].…”

Section: Resultsmentioning

confidence: 99%

“…Nurses’ decisions to report observations were often based on a “ gut feeling ” that “ something was wrong ” [52]. Similarly for individuals with intellectual disabilities, mothers [37], [69] and care workers [39] brought changes to the attention of specialists. Conversely, for decisions concerning withdrawal, it was the lack of change in a patient’s condition that triggered the decision process [70]–[74].…”

Section: Resultsmentioning

confidence: 99%

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How are Treatment Decisions Made about Artificial Nutrition for Individuals at Risk of Lacking Capacity? A Systematic Literature Review

et al. 2013

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BackgroundWorldwide, the number of individuals lacking the mental capacity to participate in decisions about their own healthcare is increasing. Due to the ageing global population and advancing medical treatments, there are now many more people living longer with neurological disorders, such as dementia, acquired brain injuries, and intellectual disabilities. Many of these individuals have feeding difficulties and may require artificial nutrition. However, little is known about the decision-making process; the evidence base is uncertain and often ethically complex. Using the exemplar of artificial nutrition, the objective of this review is to examine how treatment decisions are made when patients are at risk of lacking capacity.Methods and FindingsWe undertook a systematic review according to PRISMA guidelines to determine who was involved in decisions, and what factors were considered. We searched PubMed, AMED, CINAHL, EMBASE, PsychINFO, and OpenSigle for quantitative and qualitative studies (1990–2011). Citation, reference, hand searches and expert consultation were also undertaken. Data extraction and quality assessment were undertaken independently and in duplicate. We utilised Thomas and Harden’s ‘Thematic Synthesis’ for analysis. Sixty-six studies met inclusion criteria, comprising data from 40 countries and 34,649 patients, carers and clinicians. Six themes emerged: clinical indications were similar across countries but were insufficient alone for determining outcomes; quality of life was the main decision-making factor but its meaning varied; prolonging life was the second most cited factor; patient’s wishes were influential but not determinative; families had some influence but were infrequently involved in final recommendations; clinicians often felt conflicted about their roles.ConclusionsWhen individuals lack mental capacity, decisions must be made on their behalf. Dynamic interactive factors, such as protecting right to life, not unnecessarily prolonging suffering, and individual preferences, need to be addressed and balanced. These findings provide an outline to aid clinical practice and develop decision-making guidelines.

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Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

How are Treatment Decisions Made about Artificial Nutrition for Individuals at Risk of Lacking Capacity? A Systematic Literature Review

et al. 2013

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“…Who and when to make this decision can be a problem and communicating it in a binding way to those who may become involved in further health care can be complex [50, 71, 140]. The existence of ACDs should ideally be on the electronic medical record as an “alert”.…”

Section: Resultsmentioning

confidence: 99%

“…They also comprise a wide range of ages [4, 11, 49–55] and conditions such as cancer [3, 4, 19, 24, 25, 56–62], terminal respiratory diseases [63–66], cardiac failure [26, 67–70], profound intellectual and physical disability, and advanced dementia [1, 47, 50, 62, 71, 72]. These patients pose a challenge in the ED because the majority appear not to have access to palliative care options, in particular those with non-cancer conditions.…”

Section: Introductionmentioning

confidence: 99%

A Literature Review on Care at the End-of-Life in the Emergency Department

Forero

McDonnell

Gallego

et al. 2012

Emergency Medicine International

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The hospitalisation and management of patients at the end-of-life by emergency medical services is presenting a challenge to our society as the majority of people approaching death explicitly state that they want to die at home and the transition from acute care to palliation is difficult. In addition, the escalating costs of providing care at the end-of-life in acute hospitals are unsustainable. Hospitals in general and emergency departments in particular cannot always provide the best care for patients approaching end-of-life. The main objectives of this paper are to review the existing literature in order to assess the evidence for managing patients dying in the emergency department, and to identify areas of improvement such as supporting different models of care and evaluating those models with health services research. The paper identified six main areas where there is lack of research and/or suboptimal policy implementation. These include uncertainty of treatment in the emergency department; quality of life issues, costs, ethical and social issues, interaction between ED and other health services, and strategies for out of hospital care. The paper concludes with some areas for policy development and future research.

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“…As in other patient populations, the decision to insert a PEG tube in an elderly demented patient should always be made on an individual basis (National Collaborating Centre for Acute Care, 2006;Kurien et al, 2010;Rabeneck et al, 1997). In children and adults with intellectual disability/mental retardation, feeding via PEG has been shown to improve nutritional status and quality of life in certain patients (Loser et al, 2005;Mathus-Vliegen et al, 2001) but not others (Lee & MacPherson, 2010); no randomized studies have been performed.…”

Section: Indications For Percutaneous Endoscopic Gastrostomymentioning

confidence: 99%

Percutaneous Endoscopic Gastrostomy in Neurological Patients

Burke¹,

Geller²

2011

Gastrostomy

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Long‐term percutaneous endoscopic gastrostomy feeding in young adults with multiple disabilities

Abstract: Unlike other people with neurological deterioration, young adults with lifelong multiple disabilities may live for many years with PEG feeding. There is little gain in quality of life.

Cited by 17 publications

References 16 publications

How are Treatment Decisions Made about Artificial Nutrition for Individuals at Risk of Lacking Capacity? A Systematic Literature Review

How are Treatment Decisions Made about Artificial Nutrition for Individuals at Risk of Lacking Capacity? A Systematic Literature Review

A Literature Review on Care at the End-of-Life in the Emergency Department

Percutaneous Endoscopic Gastrostomy in Neurological Patients

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