**8. End of life and enteral nutrition**

Strong emphasis is placed upon a team approach when assessing patients who may be recommended for long term enteral nutrition [85-87]. A rigorous assessment, by a team, for each patient being considered for a PEG ought to be in place. The team needs to ensure that all risk factors which could affect outcome are considered and that an informed decision respects patient autonomy [60, 85-87]. A patient who is considered a high risk for mortality should not be considered a candidate for the procedure as it would be a futile intervention. Better patient selection would improve the outcome of patients who are recommended for and

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

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

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"

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

fitted with a PEG [91].

144 Seminars in Dysphagia

**7. Ethical considerations**

by health care professionals [92].

if they have a PEG in situ [100].

social aspects and not only clinical needs [95].

The decision to refer a patient for a PEG placement or not, includes holistic consideration of many factors to make a recommendation that is in the best interests of the patient.

The provision of hydration and nutrition at the end of life care is an area of debate and can become a highly emotional topic. Delegge et al. (2005) suggest that the decision to place a feeding tube consider the basic principles of professional ethics. Informed consent from an adult who is cognitively intact is imperative, and the benefits of the placement of enteral nutrition must outweigh the risk of the procedure, which should cause the patient no harm [89].

The concept of palliative care needs to be introduced as a real alternative for patients who are not considered candidates for PEG placement due to the presence of risk factors that place them at high risk for mortality. The World Health Organisation (2002) considers palliative care as "...an all-encompassing approach to care that begins months or years before death". PEG placement does not always benefit the patient, and although the actual PEG procedure does not harm the patient, the risk of mortality post placement is high, which in turn is harmful to the patient. The choice of refusing a PEG and remaining on oral intake as a form of palliative care should be made available to all patients and their caregivers, with provision of education and support for the decision they may make. The inclusion of a palliative care option for patients who do not wish to have a PEG placed would provide them with an alternative option, and it would also ensure that futile procedures are avoided which would uphold medical ethics.

The decisions around the recommendation of enteral nutrition, particularly in very ill patients who have a poor prognosis, are not easy for health care professionals to make. Clear guidelines that are based on evidence are crucial in order to help health care professionals navigate these difficult decisions that are often clouded with human emotion.

A role not often considered by SLTs is that of palliative care. The provision of artificial nutrition and hydration (ANH) to patients who are in the end stages of disease is debated, and can evoke emotional responses [106]. It is common for patients in the end stages of disease to have little or no oral intake [106]. Many practitioners may feel that depriving a patient of hydration and nutrition is unethical and can make health professionals uncomfortable [89,107]. A study of nurses' perceptions on ANH in palliative care yielded more clinical reasons for withholding of ANH than for providing it [106]. Reasons supporting provision of ANH were emotive, not based on clinical fact and were not in the best interests of the patient [106].

In practice, there comes a time, when a decision needs to be made about the hydration and nutrition needs of a patient in the end stages of disease. The SLT is often the professional who, based on the assessment of the patient's swallowing, is in a position to determine the feasibility of nutritional intake. It is important that the SLT and the inter-professional team are educated in the field of palliative care and ANH [106-107] to contribute to making an informed decision regarding a patient's options at end of life and reduce the number of inappropriate referrals for futile procedures with poor outcomes.
