I had a brief exchange with a colleague yesterday – it was really a clarification, yet it provided an insight into the way we both approach patients, treatment and care.
The discussion related to a patient who was struggling to swallow liquids and solids because of her underlying disease; this is not an uncommon phenomenon when treating those with advanced physical, and, particularly, neurological disease.
The usual sequence of events is a person who develops recurrent chest infections; the speech and language therapist (pathologist in America), then undertakes an examination and determines that the cause of the infections is likely ‘aspiration’ – that is, food entering the lungs because of a failure in the mechanics or coordination of swallowing.
The next stage is a decision as to how best to support the person. Sometimes acute illness or drugs can cause aspiration and time for recovery, or stopping a culprit medicine can improve the situation. Often, it is the progression of disease. We need however to work-out what to do to ensure the patient is receiving adequate nutrition in the meantime – particularly, as, when a patient is ill, this is usually a time to increase their nutrition to help them fight an infection or disease.
There are various options – adding thickener to food, pureeing, mashing, ensuring they are sitting upright. For those who have severe aspiration, when all alternatives have been considered, we sometimes use a nasogastric (NG) feed – this is a tube inserted through the nose, down the throat into the stomach, to provide food and fluid directly into the body.
I have never had an NG tube myself, although I have spoken to many patients and the process of insertion can be unpleasant, they are also easy to dislodge (pull-out) and there sometimes is a risk the tube is misplaced resulting in food entering the lungs directly causing severe pneumonia.
(Some clinical areas utilise nasal bridles – this is a way of tying the tube into place – see here.)
NG tubes are therefore a lifesaving treatment in some instances, for example, following a stroke or surgery. For people with more progressive conditions, particularly in the case of dementia, where aspiration tends to be associated with late-stage disease, patients are unlikely to understand the purpose of the intervention.
Other forms of feeding – using per-cutaneous gastrostomy (PEG) – a tube directly into the stomach is also usually inappropriate for people who have advanced dementia for similar reasons (for an insight into PEGs, I suggest you read John Diamond’s book ‘C’).
The final most sophisticated form of nutritional support is total parenteral nutrition (TPN), where nutrients are provided directly into the bloodstream. This is usually only appropriate in certain situations, for example, after gastrointestinal surgery or recovery from critical illness.
What to do when there is no option for an NG, a PEG or TPN?
One possibility is starvation.
Not allowing the patient any food or drink at all. (Long-term treatment with intravenous fluids is also unsustainable as a means of hydration for other technical reasons).
We don’t do this.
We need to decide how we can support – as often people are still hungry or thirsty, assuming they are conscious.
It is this decision that started me off today – in particular, how we talk about it.
The consensus with my colleague was that there were no alternatives other than allowing the person to eat and drink at risk. This is the phrase we use on my ward, which implies that we support a person to eat and drink as they are able, providing as much support as we can to reduce the risk of aspiration – ensuring they are fully awake, alert, sitting upright, out of bed, small sips, and so on.
When asked for his opinion, my colleagues suggestion was ‘ethical feeding’ – it transpired he meant the same as me i.e. eating at risk, although I needed to clarify the situation, after all, what is ethical? One might interpret ‘ethical’ as restraining a patient and feeding them against their will to prevent starvation, as sometimes happens in some psychiatric conditions.
It transpired that ethical and at risk are the same.
The difference to me was the feeding.
As adults, we eat our food. When we are unable or incompetent, we are fed. I feed my cat or dog or a baby, I eat my McDonalds.
This subtle distinction has little to do with food or nutrition but, locus of control.
The essence of doing to a person and doing with. The latter assumes autonomy or capacity, empowers, looks to an independent future state, the former, to dependency.
This translates across many aspects of health and social care, indeed, it is one of the philosophical differences between the two, where health is more often a doing to, social care, a doing with, one dependence, the other independence. Paternalism and Autonomy.
There will always be times when a paternal approach is required, when we are so unwell, sick or poorly that we want to be looked-after, when we are happy to handover control; as a model for the future, we need to always consider first with before to.