The tumour anorexia-cachexia syndrome
Half of all cancer patients and up to 80% of palliative care patients suffer from AKS. Those affected notice a decrease in appetite and a simultaneous loss of body strength and weight. This leads to an extremely stressful uncertainty about the significance and causes of these changes and what measures would be necessary and suitable to counteract them. Patients and their families rate the psycho-social burden as “very high” (one third of those affected) to “extremely high” (a further third).
As a result, a primary concern is to weigh some form of artificial nutrition in these cases. In addition to the physical-biological aspect, a good therapeutic concept includes the psychosocial burden of uncertainty and anxiety as well as the spiritual significance of the existential question of the finite nature of life. The stress experienced by those affected can be significantly reduced with suitable programmes. The key to this is to recognise the point at which further measures of intensified natural or (supplementary as well as exclusive) artificial nutrition do not mean any improvement for patients, as the nutrients supplied can no longer be utilised as before, but rather cause damage. Symptoms such as nausea and vomiting can be caused or exacerbated as nutrients that have not been properly processed circulate in the bloodstream and the liver can no longer sufficiently detoxify the body. In addition, fluid overload and the resulting increase in tissue fluid, including in the lungs and abdomen, often trigger or exacerbate shortness of breath and pain.
Recognising when and for how long artificial nutrition measures are useful for patients and when they do more harm than good is essential for all those affected in terms of quality of life and treatment planning. A good nutritional concept should enable or support a balanced diet for as long as it makes therapeutic sense and at the same time include open, honest and appropriate communication in order to explain treatment goals and their changes in a comprehensible way and also address the associated fears and concerns of those affected. This is particularly challenging because when the treatment goal changes, the previous treatment concept, which was based on intensive (artificial) nutrition and hydration and was correct and necessary for a long time, now has to be abandoned in favour of a new concept. If the harm is greater than the benefit, this changed concept provides for a reduction or, in individual cases, even the abandonment of artificial nutrition and hydration.
This poses various challenges: (a) recognising when AKS has occurred and is irreversible. In addition to clinical assessment, this requires biomarkers that make this diagnosis possible in palliative care patients; (b) to adapt the therapeutic measures. For this purpose, a high level of diagnostic certainty is necessary and the possibility of monitoring the effects of the adaptation; (c) to be able to respond individually to the concerns and fears of all those affected, taking into account a sound understanding of the changes in the body in advanced cancer/disease in general, but also the personal situation of the patient in particular, and thus to be able to communicate treatment decisions in a comprehensible manner. Knowledge of the pathological changes and the associated biochemical changes in the body can help to explain the background to treatment planning more clearly to those affected and their environment, to better address fears and worries and, in view of the existential threat of the finiteness of life, to provide comprehensive and best possible support to those affected.
With the support of the ALIVIA Foundation, we will be able to begin systematic research into these extremely important scientific questions from the fourth quarter of 2024.
Contact: tobias.steigleder(at)uk-erlangen.de
