Cachexia: The hidden illness driving loved ones apart

We are all going to die. We all know it. Yet we persist in doing our level best to forget the fact. It could be argued that there are good reasons for this deliberate disattention. Fixating on dying, death and decomposition doesn’t do much for the enjoyment of the here and now. If it’s an inevitability, what is the point of worrying or even thinking about it? There is indeed little point in worrying, but as for not thinking about it, that’s another matter.

It may seem blindingly obvious that the process of dying brings with it profound changes to the way our bodies work as they wind down. But how much do we know about what those changes are? And more importantly, how much do we know about how best to deal with them if or when they occur to us or someone we love?

One such change relates to the appetite of terminally ill patients. When we think of people who are dying of cancer, for example, we tend to think that it is the cancer itself that causes all the problems. But a little-known condition called cachexia that affects patients with cancer, AIDS, and other life-threatening conditions can cause avoidable misery and strife, for both the dying person and their loved ones.

A hidden illness

If you haven’t heard of cachexia you would not be alone, yet this hidden illness affects up to four in five people with advanced cancer. It involves the inability to properly metabolise food, which leads to a wasting away, especially of muscle tissue. It is largely caused by the cancer inflaming the body’s cells, leading them to produce excessive amounts of proteins called cytokines, which disrupt metabolic processes. As yet, a treatment to effectively reverse this cycle has not been developed. There may be early signs of cachexia in the cancer journey that do not necessarily develop further but in its later “refractory” stages, while there are treatments to slow it down, there is nothing that can be done to stop it.

It sounds awful, but in terms of physical discomfort it is not so bad. True, it often means that the person feels very tired, but it is unlikely to directly cause them pain, and they do not feel hunger pangs. Ironically, it is the absence of hunger and the feeling of nausea that trying to eat can bring on, combined with the ignorance of the well-meaning souls who have not received appropriate advice, which can lead to grief.

The preparation and presentation of food is of great cultural importance. Nor is it simply a matter of general social solidarity. From the moment a mother offers her breast to nourish her child, it entails the profoundest expression of love. Combine these powerful emotions with the almost ubiquitous (and for the most part very sensible) belief that good health requires adequate nourishment, and you have a powerful imperative to make sure that the loved one whose life you fear for eats well, because it is through eating well that they will get better.

But when people have advanced cachexia, they won’t get better, and what is more, they may well find the food that is being pushed on them to be so inedible that they will do almost anything to avoid it. Family get-togethers around the table are events to hide away from; generous meals of their favourite dish are to be pushed aside or picked at. Meanwhile, the person who has put their love into preparing the food feels rejected when their efforts are spurned. And remember, all this is going on during numbered days when there is little time for strains to be eased or rows resolved, but when there is a plenty of time for the regrets of those who survive.

This is not the way to end a relationship, and it doesn’t have to be like that. If we understood that part of the process of dying for some people includes withdrawal of the need to eat, we could find plenty of other ways to show them we love them besides preparing food. Yet as long as we persist in hiding away death and dying, we won’t know that.

A key part of palliative care

You may think that we don’t need to know about such things until they actually touch our lives, at which point we can rely on healthcare professionals to instruct us on how to cope with them. But that assumes that they will know what to tell us, an assumption that may not always be warranted. If we look at nursing and medical curricula, or at the distribution of research grants, inattention to palliative compared to curative care quickly becomes obvious. One of the consequences of this state of affairs is that clinicians are often not adequately prepared to recognise or deal with conditions such as cachexia.

So maybe the first step that needs to be taken on the road to a healthier response to dying is to start ensuring that all our health professionals have a sound understanding of the processes involved, and what to do to best alleviate their effects.

By Sam Porter, Queen's University Belfast

This article was originally published on The Conversation.

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