Swallowing difficulties can be a symptom of many different disease processes, and are associated with adverse health outcomes; malnutrition, dehydration, pneumonia and death. The use of feeding tubes directly into the stomach as in percutaneous endoscopic gastrosomy (PEG) is an increasingly common treatment option for these patients with more and more being cared for in the community. Living with a gastrostomy tube brings physical and emotional impacts and direct consequences for quality of life. Guidance from the Royal College of Physicians recommends ‘nil by mouth’ should be a last resort even when swallow function is deemed unsafe. Impaired swallowing can cause increased anxiety and fear. Many patients avoid oral intake leading to malnutrition, isolation and depression. Understanding and balancing the risks and potential benefits of continuing oral intake or choosing gastrostomy makes this a complex and challenging area of health care.
This original pilot study was conducted to explore and understand the factors that influence a patient's decision-making when considering percutaneous endoscopic gastrostomy placement for nonoral nutrition and hydration supplementation. Seven patients living with progressive dysphagic symptoms who had made a decision about percutaneous endoscopic gastrostomy placement were interviewed and their responses analyzed using the constant comparison method. All participants felt they had no option other than to accept the percutaneous endoscopic gastrostomy. The impact of visible physical deterioration and medical opinion were the most powerful influences on patients' decisions. Patients' perception of their involvement in the decision varied. This was linked to the amount and timing of information supplied and support they felt they received. Few patients have prior knowledge of tube feeding and rely heavily on medical advice. Effective communication by healthcare professionals can promote an environment that is supportive of patients' involvement in decisions. Adequate preparation time is vital if patients are to stop feeling uninvolved or peripheral to the decision-making process. Multidisciplinary teams need to address their working practices so that they do not intimidate patients, but rather empower patients in their decision-making.
Motor neurone disease (MND) is a relatively rare degenerative disorder. Its impacts are manifested in progressive loss of motor function and often accompanied by wider non-motor changes. Swallowing and speech abilities are frequently severely impaired. Effective management of dysphagia (swallowing difficulty) symptoms and nutritional care requires a holistic multidisciplinary approach. Care must be patient focused, facilitate patient decision making, and support planning towards end of life care. This article discusses the challenges of providing effective nutritional care to people living with motor neurone disease who have dysphagia.
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