This week our CEO spoke to Elaine Allerton of the British Dietetic Association. She gives us a fascinating insight into the challenges faced in their work with feeding tubes.
‘One of the biggest ethical challenges we have is around tube feeding. The end stage of progressive neurological diseases may affect people’s swallowing ability. Earlier on in diagnosis they may be offered a gastrostomy whereby a tube is placed into their stomach and a liquid feed and/or medications can be given via this tube. People can be afraid of this procedure, and they will soldier on with a diminishing oral intake, maybe a bit in denial; “I don’t need that yet”. Their weight starts to decline and they become susceptible to infections because their immune system might be compromised by insufficient nutrition. Often when they come round to the idea that they need the tube feeding, they can be in too poor a medical condition to undergo the procedure. This can lead to ethical dilemmas.’
Elaine Allerton qualified as a dietitian 18 months ago. Prior to this she worked for an investment bank as an accounting control manager. She then had a family and then went back to university full-time to re-train as a dietitian. A lot of her work is nutritional support and care of elderly people who are unintentionally losing weight.
Elaine explained that the gastrostomy doesn’t prevent them eating orally but may relieve the stress of meal times as they will not be solely reliant on their oral intake to meet their nutritional requirements. The nature of the disease and the swallowing difficulties may mean that is challenging to meet nutritional requirements orally.
‘The gastrostomy is not visible when you are dressed. You can chose to be bolus fed, where the liquid feed is put into a syringe and manually pushed through the tube at ‘meal times’, or be fed overnight whilst you sleep by a pump.. Nobody outside your immediate family or medical team would know that this is how you have your nutrition, unless you choose to share this information with them. It can give people a better quality of life because if somebody is struggling to meet their nutritional requirements orally it can put a lot of pressure on the family unit, and make mealtimes stressful. The partner will be saying “Please please eat” and worrying that their loved one is wasting away in front of their eyes, whilst the other person may feel that meal times are a chore.
Handling Ethical Dilemmas
‘The ethical dilemma involves working out whether a person is medically fit enough for the procedure and giving them all the information they need to make an informed decision. We aim to give full details of the risks and benefits to the patient. If the patient has capacity to make a decision, we run with their decision. That can be difficult because the patient might make what we feel is a poor decision, but as long as they have capacity then it is the right decision for them.
‘I advise my patients with a progressive neurological disease, who are at risk of malnutrition, to consider the possibility of gastrostomy tube placement early on because there may be a point in the future when they are too weak to undergo the procedure, and this option may not be available to them. When they are strong they have a better prognosis undergoing this procedure and it doesn’t stop them from eating orally which a lot of people fear. If the procedure is delayed to when they need to be using the gastrostomy tube for feeding,, often by the time the hospitals and the whole team have gone through all the pre-surgical checks and form filling procedures,. it could be up to two weeks before we could get the gastrostomy tube fitted, and that’s two weeks further on with limited nutrition.’
Elaine described on patient with a very fast progressing version of end stage motor-neurone disease.’ They had been offered a gastrostomy tube a few months before and had declined. They were aspirating and swallowing their own saliva secretions, and it was going into the lung and causing chest infections and pneumonia. During their last inpatient admission with a chest infection, the patient decided they did want to have a gastrostomy tube placed. It was quite difficult to communicate because the patient could no longer speak, however they had capacity to fully understand their options and the decision making process. Yet, interestingly as a multidisciplinary team, we were picking up different information from the patient when their family weren’t around. The family were very keen on the patient having the gastrostomy and were verbalising this for them. When we went to speak to the patient outside visiting hours, they would communicate in writing that they would consent to the gastrostomy to please their family. That’s quite a difficult ethical dilemma. Is it right that a family can put pressure on an individual to have a procedure?’ Medically we felt the patient didn’t have long to live, although nobody knows exactly how many days/weeks/months, and there is an argument to say that it is inappropriate to being doing this intervention when it is not going to change the prognosis of the disease, and equally valid is the counter argument that all efforts to provide nutrition should be made as the patient may benefit from the extra days/weeks to witness a major life event (e.g. wedding, birth of a child,) or to complete their legal affairs. Each situation is unique.’
Elaine demonstrated this by another case which involved a patient at the end stage of Parkinson’s disease. ‘At this late stage, the patient had an unsafe swallow, no capacity to make decisions and no means of communication, so the family was making decisions for them. There had been no discussions within the family about this scenario when the patient was well and able to communicate, so the family did not know the patient’s wishes. Obviously this is a hugely emotionally charged time for a family; they know that their loved one is approaching the end of life and may not yet be reconciled with this. After being given verbal and written information detailing the risks and benefits, the family decided in favour of placing a gastrostomy tube. At this stage of disease progression, many of the Multi Disciplinary Team felt that it may be better for the patient to be at home and kept comfortable during their last days, or perhaps in a nursing home if the family felt that they couldn’t manage the patient’s care needs at home. Sadly, this patient spent their last 6 weeks of life on a hospital ward and unfortunately died there, approximately 2 weeks after the gastrostomy was placed. Whilst their decision was not the choice that I would have made for my loved ones, having witnessed similar situations and outcomes, I recognise that this family were doing what they believed to be in the best interests of their loved one, who they weren’t ready to say goodbye to.‘
Elaine concluded her interview with the following plea. ‘I would urge that anyone with a progressive disease diagnosis (like Parkinson’s Disease or Motor Neuron Disease) has a frank conversation with their families/partners to ensure that their end of life wishes and views on enteral/artificial feeding are known to the family/partner.’
Do you experience similar ethical challenges in your work? Let us know in the comments!