**7. Ethical considerations**

A patient may refuse a NGT or a PEG procedure and wish to begin/ continue oral intake, even if it means a shorter survival period. Patient's decisions need to be honoured and respected by health care professionals [92].

Where patients opt for enteral nutrition, despite the benefits that enteral nutrition can provide a patient, such as improved nutrition and a longer survival time, quality of life is affected [93]. Health care professionals should counsel patients on the effects that a PEG tube will have on their quality of life [94], by shifting the focus of management post PEG insertion to include social aspects and not only clinical needs [95].

The placement of a PEG for the provision of enteral nutrition is considered a life-saving procedure in some cases [93, 96] and many patients who have a PEG attest to this fact and the benefit that PEG feeding provides them [96-97]. One study noted particularly positive patient reports on their experiences living with a PEG tube, with 84% (N=51) noting a positive or neutral effect of the tube on their lives, 90% (N=51) expressing a view that the tube was worthwhile and 96% (N=51) noting that they would recommend it to another patient [97].

Negative experiences that a PEG has on patients' quality of life have been extensively reported. Common difficulties associated with having a PEG tube, which affect quality of life, include a high level of complication, like tube blockage, leakage and discomfort [94] interference with family life, social activities and hobbies [93-94, 98-99], interference with intimacy [94], negative reactions from others [95], a burden placed on family or caregivers [95] and a feeling of missing out on meal times and food [95]. Similar negative effects on quality of life are reported in patients who receive NGT feeds [98]. A study in Taiwan noted that the majority of patients are discharged home on NGT feeds because of a refusal to have a PEG placed [100]. Reasons included concern over leakage and infection following a PEG, a worry that the patient is too old and frail to undergo an operation and a cultural belief that the patient will not die "whole" if they have a PEG in situ [100].

In light of the high mortality rate post PEG placement, the concept of futility bears discussion. Futility refers to a medical intervention that would have no effect, or if there was an effect, it would not be one that the patient benefitted from [89]. Many patients receive long term enteral nutrition where no effect or benefit is proven in terms of nutritional improvement or survival [56]. All aspects linked to possible mortality must be considered, and risks and benefits weighed before a recommendation for enteral nutrition is made. If a patient is considered to be a high risk for mortality, certain procedures that will cause further suffering and no benefit may be deemed futile [7], and should be avoided [21]. The decision to place a PEG should be based on the perceived benefit it will bring to the patient [89] and if no benefit is presumed, then the procedure should not be done. A patient who is identified as a high risk for mortality post PEG placement should not receive a PEG but rather they and their families should be counselled on the risks that exist and the reasons for deferred placement. A team can make a recommendation for enteral nutrition based on their knowledge but a cognitively intact patient must make the final decision after being fully informed about the benefits and risks involved in the proposed management plans [89].

The issue of futility in PEG placement is most particularly noted in the case of patients with advanced dementia being fitted with a tube for the provision of long term enteral nutrition [101-102]. In this population, the placement of a PEG has no benefit to the patient and can actually lead to decreased survival due to complications, such as aspiration, that result from the placement [89, 102]. The use of long term enteral nutrition in patients with malignancy, with the aim of nutritional gain, needs to be questioned as there is no real nutritional gain in these patients post placement [16, 62, 78].

Azzopardi and Ellul (2013) suggest that, in certain patient populations, the insertion of a PEG will only prolong a life which is of poor quality and it needs to be determined through discussion whether this decision is ethical. A consideration in South Africa particularly, is whether it would be appropriate to perform futile procedures in a resource constrained public hospital sector [103]. If PEGs are placed in cases where patients have poor prognosis and are considered high risk for mortality post PEG placement, an argument could be made that the scarce resources would be better directed to those patients with potentially better outcomes.

The use of protocols in patient care ensures adherence with best practice. They are important documents to which health care professionals should refer to guide practice that will result in the provision of the best possible care [104]. Protocols for the assessment and management of patients with dysphagia who require enteral nutrition exist [2, 38, 66, 105] but do not include considerations like assessment of risk factors to justify the PEG procedure. Further, adherence to protocols cannot be assumed. The presence of risk factors in patients do not always deter health professionals in making a recommendation for PEG placement, as is evident by the persistence of high mortality rates, despite the known effects of risk factors and their effect on mortality [56].
