Percutaneous endoscopic gastrostomy in older patients with and without dementia: Survival and ethical considerations.

BACKGROUND AND AIM: Notwithstanding multiple recommendations in guidelines, percutaneous endoscopic gastrostomy (PEG)-tube placement is still performed in patients with dementia. In this study, we aim to investigate survival in patients with and without dementia after PEG-tube placement. METHODS: We conducted a retrospective multicenter study in four different hospitals in the Netherlands. Furthermore, we explored the ethical considerations that may play a role in the decision whether or not to insert a PEG tube in a patient with dementia. RESULTS: Three-hundred-and-three patients were included, mean age of 77.4 years. Forty-two (13.9%) patients had dementia. Short-term complications did not differ between patients with and without cognitive disorders (P 0.224). However, patients with dementia survived significantly shorter after PEG placement than did patients without dementia. Adjusted for age and sex, patients with dementia had a 49% increased risk of mortality (hazard ratio 1.49, 95% confidence interval 1.01-2.19). In our exploratory literature search, we found that several ethical concerns and considerations play a role in the decision process of PEG placement. These considerations are both medical and nonmedical and include beliefs regarding the benefits of a PEG tube, a lack of knowledge about the natural course of dementia in both professionals and family of patients, and a fear of letting a patient die hungry. CONCLUSIONS: Patients with dementia had higher mortality rates after PEG placement than patients without dementia. Although multiple ethical concerns and considerations play a role, insertion of a PEG tube in patients with dementia is not appropriate.

Percutaneous endoscopic gastrostomy (PEG), in elderly patients with dementia and anorexia. Medical and ethical issues regarding placement.

BACKGROUND AND AIMS: Ethical and medico-legal issues reviews of Percutaneous Endoscopic Gastrostomy (PEG) placement in elderly patients is an important topic of international medical literature. PEG is often inappropriately placed in patients with not spontaneous oral feeding intake, cause of unrealistic expectations. We performed a critical review of the literature for placement of PEG in geriatric patients. METHODS: A literature review was performed about the positioning of the PEG in geriatric patients with dementia and severe anorexia. This assessment has served to develop an algorithm that would be able to provide adequate indications for PEG placement in this patient population. RESULTS: We obtained appropriate indications about PEG placement, below: 1) Esophageal obstructions (like esophageal or neck cancer) 2) neurological deficits correlated dysphagia (like ictus sequelae) 3) refusal to swallow without concomitant terminal illness (like protracted pseudo dementia caused by severe depression) 4) chronic gastric decompression in patients with benign/malignant obstruction who do not wish or can't have a nasogastric tube placed. CONCLUSIONS: When compared with controls matched for age, elderly patients with cognitive impairment who have feeding gastrostomy do not demonstrate improved survival. KEY WORDS: Anorexia, Dementia, Elderly, Percutaneous Endoscopic Gastrostomy.

How many patients in a prolonged disorder of consciousness might need a best interests meeting about starting or continuing gastrostomy feeding?

OBJECTIVE:: To estimate the number of people in a prolonged disorder of consciousness (PDOC) who may need a formal best interests decision-making process to consider starting and/or continuing life-sustaining treatment each year in the population of a developed country. METHOD:: Identification of studies on people with a PDOC giving information about incidence, and/or prevalence, and/or cause, and/or location of long-term care. Sources included systematic reviews, a new search of MEDLINE (April 2018), and a personal collection of papers. Validating information was sought from existing data on services. RESULTS:: There are few epidemiologically sound studies, most having bias and/or missing information. The best estimate of incidence of PDOC due to acute onset disease is 2.6/100,000/year; the best estimate of prevalence is between 2.0 and 5.0/100,000. There is evidence that prevalence in the Netherlands is about 10% of that in other countries. The commonest documented causes are cerebral hypoxia, stroke, traumatic brain injury, and tumours. There is some evidence suggesting that dementia is a common cause, but PDOC due to progressive disorders has not been studied systematically. Most people receive long-term care in nursing homes, but a significant proportion (10%-15%) may be cared for at home. CONCLUSION:: Each year, about 5/100,000 people will enter a prolonged state of unconsciousness from acute onset and progressive brain damage; and at any one time, there may be 5/100,000 people in that state. However, the evidence is very limited in quality and quantity. The numbers may be greater.

[A survey about the criteria for the indication of a gastrostomy in patients with advanced dementia]. / Criterios de médicos tratantes para indicar instalación de gastrostomía en pacientes con demencia avanzada.

BACKGROUND: Decision making concerning patients with advanced dementia is complicated. The indication of a gastrostomy is among these hard decisions, especially considering that there is no consensus about its real benefit. AIM: To explore the criteria used by Chilean physicians to indicate a gastrostomy in patients with advanced dementia. MATERIAL AND METHODS: A questionnaire about the decision making to indicate a gastrostomy was delivered to 72 physicians working in public and private hospitals. RESULTS: The survey was answered by 43 physicians. Fifty one percent had indicated a gastrostomy to patients with advanced dementia in the last year, 79% believed that gastrostomy reduces the risk of aspiration pneumonia, 50% thought that gastrostomy helps in bed sore healing and 74% believed that gastrostomy improves survival. CONCLUSIONS: The majority of physicians who answered the survey think that gastrostomy will improve the health status of patients with advanced dementia.

Should they have a percutaneous endoscopic gastrostomy? the importance of assessing decision-making capacity and the central role of a multidisciplinary team.

Decisions about percutaneous endoscopic gastrostomy (PEG) can be clinically and ethically challenging, particularly when patients lack decision-making capacity. As the age of the UK population rises, with the associated increase in prevalence of dementias and neurodegenerative diseases, it is becoming an increasingly important issue for clinicians. The recent review and subsequent withdrawal of the Liverpool Care Pathway highlighted feeding as a particular area of concern. The authors undertook a 1-year retrospective review of individuals referred to the feeding issues multidisciplinary team (FIMDT) at Addenbrooke's Hospital, Cambridge, UK, in 2011. The majority of patients referred (n = 158) had a primary diagnosis of cancer (44%). The second largest group was those who had had a stroke or brain haemorrhage (13%). Twenty-eight per cent of patients had no, or uncertain, decision-making capacity on at least one occasion during decision-making. There are reflections on the role of a multidisciplinary team in the process of decision-making for these complex patients.

[Informed consent to the insertion of a PEG tube in a 53-year-old male patient with highly advanced dementia]. / Aufklärung und Einwilligung zur Anlage einer PEG Sonde bei einem 53 jährigen Patienten mit fortgeschrittener Demenz.

In patients with advanced dementia and dysphagia, regular fluid- and food intake together with oral medication can be guaranteed by insertion of a PEG tube. Consent to a treatment in a patient without legal capacity requires nomination of a legal substitute by an Austrian court. The following case report describes the problems associated with this particular situation exposing additional psychosocial stress to closest relatives and to the palliative care team in charge for the patient. This case report describes the legal options together with the finally chosen path of medical treatment which in clinical praxis may not always match.

[The PEG-dilemma - pleading for an ethically responsible medical treatment]. / Das PEG-Dilemma - Plädoyer für ein ethisch verantwortungsbewusstes ärztliches Handeln.

Within the 32 years of its existence our attitude towards artificial enteral nutrition via PEG-tubes has changed in a fundamental way: in our modern understanding nutrition via PEG is supportive, early, preventive, and in many cases temporary. PEG-feeding is not an alternative but a possible supplement to normal oral food intake and requires an individual medical indication as well as an ethical justification. This does not follow standardised algorithmic thinking but is decided on an individual base taking personal wishes, resources, and needs of the individual patient into account. Nutrition via PEG-tube is not a terminal basic or even symbolic treatment at the end of life. The present dilemma of the PEG is that the public discussion primarily focus one-sided on the problems of PEG-placement in multimorbid, elderly, and/or demented patients or patients in end-stage tumour diseases where indeed PEG-placement is neither medically nor ethically justified - we still place PEG-tubes to often in the wrong patients! On the other hand we still consider supportive and in many cases temporary nutrition via PEG too rare and even too late in those patients which clearly could benefit from an early, supportive, and preventive PEG-treatment on the base of our present evidence-based scientific knowledge - we still consider PEG-treatment not adequately and in most cases too late in the right patients! Placing a PEG-tube is not the second last step before death and physicians have to accept the ethically given limits of medical treatment by realizing our modern understanding of the benefits and limits of supportive artificial nutrition via PEG.

[Endoscopic and surgical procedures for enteral nutrition]. / Endoskopische und chirurgische Techniken zur enteralen Ernährung.

Standardized management of oncology patients necessarily includes screening for nutritional risk. Weight loss of > 5 kg within 3 months and diminished food intake are warning signals even in overweight patients. In case oral nutrition is neither adequate nor feasible even by fortification or oral nutritional supplements, the implantation of a percutaneous endoscopic gastrostomy (PEG) or fine needle catheter jejunostomy (FNCJ) offers enteral access for long-term nutritional support. Although the indications derive from fulfilling caloric needs, endoscopic or operative measures are not considered to be an urgent or even emergency measure. The endoscopist or surgeon should be fully aware and informed of the indications and make a personal assessment of the situation. The implantation of a feeding tube requires informed consent of the patient or legal surrogates. The review summarizes recent indications, technical problems and complications.

Difficulties with percutaneous endoscopic gastrostomy (PEG): a practical guide for the endoscopist.

BACKGROUND: Percutaneous endoscopic gastrostomy (PEG) is a widely used and effective means of providing long-term nutrition in patients with inadequate oral intake. The demand for this intervention has risen steadily since the early 1990s. Endoscopists who perform PEG insertion have become increasingly concerned about inappropriate use of this intervention. AIMS: This review addresses the particular areas of difficulty, namely, dementia, stroke, aspiration pneumonia and use of PEG to facilitate discharge from hospital. METHODS: A Pubmed literature search and the author's personal experience. CONCLUSIONS: Strategies for improving patient selection and a practical approach to difficult decisions are described.

[Percutaneous endoscopic gastrostomy in Iceland over 10 year period: a retrospective study of indications, complications and ethical issues]. / Magaraufun um húd med hjálp speglunar á Íslandi 2000-2009: Ábendingar, fylgikvillar og sidferdileg álitamál.

OBJECTIVE: Percutaneous endoscopic gastrostomy (PEG) is the preferred method for long term enteral feeding. No nationwide study has reported on the experience and outcome of PEG procedure. The aim of this study was to describe the frequency, indications, complications, mortality and ethical issues related to PEG procedures in Iceland. MATERIAL AND METHODS: A retrospective study was performed on all adult patients who had PEG procedures in Iceland between 2000-2009. Medical charts from patients found were reviewed and data regarding demographics, indications, complications, mortality and ethically controversial cases was obtained. RESULTS: A total of 278 patients had PEG procedures during the 10 year study period. There were 163 men and 115 women with a median age of 70 years. The mean annual incidence of PEG procedures was 12.8/100.000. Sufficient medical data for evaluation was obtained from 263 patients. The most common indications were neurological disorders (61%) and malignancies (13%). Dementia accounted for only 0.8% of the indications. Total complication rate was 6.5% with 1.9% being major and 4.6% minor complications. Peritonitis was the most common (2.7%) complication followed by peristomal skin infection (1.9%). Operative mortality was 0.8% and 30 day mortality rate was 13%. In seven (2.7%) cases the PEG procedure was considered to be ethically and medically controversial. CONCLUSION: This is the first published nationwide study on the experience of PEG procedures. The complication and mortality rates in Iceland are among the lowest reported. The indications reported here are in agreement with national guidelines with the rate of PEG procedures in ethically controversial cases being very rare.

Gastrostomy tube feeding in children with epidermolysis bullosa: consideration of key issues.

Complications of severe forms of epidermolysis bullosa (EB) almost invariably lead to chronic malnutrition, jeopardizing immune status, growth, iron status, bone health, wound healing, and quality of life. Although gastrostomy tube (G-tube) feeding has successfully addressed the difficulties of providing nutrition and medications in some children attending our center, others have developed problems such as abdominal distension, poor feed tolerance, and leakage of gastric contents with persistent localized skin ulceration, posing enormous challenges to skin management and nutritional maintenance. Suspicions that G-tube placement and feeding cause or exacerbate these problems has led to a decline in placements at our center over the last 10 years. We therefore recognized that it should not be rejected without due consideration of why some patients seem more prone to complications than others. Thus, information on selected issues and outcomes of G-tube placement was obtained from records of 66 patients undergoing surgery between 1989 and 2008. The complex interrelationships of the sequelae of severe EB, changes in practice over 20 years and lack of data for patients treated early in the series make it impossible to draw firm conclusions at this stage, however, our scrutiny provides valuable information on which to base debate and future studies. It also offers well as useful insights for fellow professionals involved in nutrition support in children with severe EB.

Competent to care. Are all doctors competent in nutrition?

Optimising nutrition is known to improve outcome in a variety of specialities from elderly care to orthopaedics. The National Institute for Health and Clinical Excellence guidelines of 2006 have provided standards to positively influence the profile of nutrition within the National Health Service. However, what role do doctors have in this process? Clearly, not all doctors are competent in nutrition. In a recent US survey only 14% of resident physicians reported feeling adequately trained to provide nutrition counselling. A lack of knowledge has also been demonstrated by general practitioners (GP). The Intercollegiate Group on Nutrition is working to improve nutritional knowledge in British medical graduates. In addition, nutritional care is now a core competency assessed in the UK Foundation Programme curriculum, which can only be a positive step. The assessment process may even influence some of the supervising consultants. What about those doctors currently practising in the UK? Recently, a questionnaire study was undertaken to look at healthcare professionals' knowledge of the benefits and risks of percutaneous endoscopic gastrostomy (PEG) feeding. Important gaps in knowledge were found that were positively correlated with whether respondents had received relevant education. Referral for a PEG was considered to be appropriate for patients with advanced dementia by 31% of the GP compared with 10% of the consultants. Only 4% of these GP had received any training in this ethically-sensitive area at a time when they may be asked to countersign consent forms for patients who lack competence. So, what is the way forward? Positive steps are being taken in the undergraduate curriculum and Foundation Programme. Perhaps it is the responsibility of those doctors with the skills and opportunities to promote good nutritional knowledge in those doctors already practising in the UK.

Percutaneous endoscopic gastrostomy in hospitalized incompetent geriatric patients: poorly informed, constrained and paradoxical decisions.

BACKGROUND: The frequency of performing percutaneous endoscopic gastrostomy in demented older people has increased in recent years. Several reports indicate flaws in the criteria for performing PEG and in the decision-making process, raising concerns about the adequacy of the consent. OBJECTIVES: To assess the knowledge and attitudes of referring doctors and gastroenterologists, and to evaluate attitudes and feelings of family members concerning PEG insertion. METHODS: We conducted a survey of 72 doctors who referred 126 demented patients for PEG, as well as 126 family members and 34 gastroenterologists. Closed-ended questionnaires were designed for each study group, completed by the participants, and computer analyzed. RESULTS: Approximately 50% of family members expressed dissatisfaction with the decision-making process. Referring physicians reported that PEG insertion was often dictated by the need to transfer patients to a nursing home, with 50% admitting institutional pressure. Most of the referring physicians believed that PEG improved quality of life and increased longevity, whereas gastroenterologists did not expect an improved quality of life and thought that administrative demands should not intervene in the decision to insert PEG. CONCLUSIONS: The decision-making process in the patient's families regarding PEG insertion for their demented relative is unsatisfactory, often takes place under pressure, and does not provide sufficient information about the procedure or its complications. Interpersonal communication between the patient's family and the medical team needs to be improved, and institutional demands should not play a major role in the medical decision to insert PEG. Gastroenterologists should take a more active role in the deliberations regarding PEG.

Feeding tubes: three perspectives.

Percutaneous endoscopic gastrostomy tubes, or PEG tubes, look innocuous enough-narrow, plastic, pliable tubes, that when inserted into the stomach protrude approximately 3 to 5 inches and can be attached to a bag of liquid food. How can something so seemingly straightforward create so much controversy and evoke such intense emotion? It seems that part of the answer lies in the fact that nobody sees the same thing when they look at a feeding tube. This article will present three different views of gastrostomy tubes and challenge practitioners to think beyond traditional models.