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  • Writer's pictureRita Lança

Eating from Death: Contributions to a sociology of end-of-life care II

This post continues the previous one, where I suggest you start reading.

Wanderings from the body to the kitchen

The architecture of the houses in Alentejo, where I grew up, gathered the space where both cooking and eating took place, creating a mixture indifferent to the values of privacy and individuality. In Sakaivo, a remote place in the mountains of Madagascar, the village chief welcomed me in his kitchen, the centre of the house, with windows opening out to the world, occasionally interrupted by the curious chirping of children. Both here and there, I feel that death is closer.

This intertwining carries, in my analysis, another interesting symbolism – the familiar bond with the smells and products used in preparation, and the dirt associated with the smoke that darkens the kitchen. Both examples contrast with the aseptic environments we often came to inhabit and that also manifest in how we tend to view periods of greater vulnerability, including a weak, odorous and painful body, which we no longer perceive as natural.

Just like the lively kitchens of Montemuro Mountain, dressed in black, our body is similarly an ecosystem that needs to be looked at and cared for according to its cycles. Supporting it by following its own rhythm is a form of deep respect, like when men in Alentejo still doff their hats in a funeral procession as a sign of reverence.

These sensory, olfactory, tactile dimensions have been intimately conditioned by the reorganization of productive processes. To favour industrialisation, complex transformation processes have been altered and simplified, such as fermentation, which has gradually been replaced by processes such as pasteurisation. I remember the artisanal way that neighbour Zé Gordo and Fecidade made cheese at home, and I observe sadly but resiliently against these changes.

We mastered fire; will we be able to stop the death of the body?

The Greek mythological figure of Prometheus, the Titan who dared to steal fire from the gods to give it to mortals, carries, in my view, interesting dimensions for reflection on how we manage nutrition in end-of-life scenarios. Metaphorically, the epic narrative about him places fire/life at the centre. It anchors in the choice to face fears/circumstances with courage, and his action is informed/prepared. Interestingly, he is the son of Iapetus, the Titan god associated with the span of life, with mortality.

Beyond the horizon of technical progress, to master fire, man had to overcome the fear generated by fire, as with other species, which tend to protect themselves from it. Conversely, fear of death obscures and delays acceptance of the impossibility to control the transformation of the human body, which converges irreversibly towards the loss of protective functions, towards decline, cessation of life, and a process of decomposition. Humanity has no solution for death and that’s a fact.

Eating from Death

How many of our food choices in end-of-life care are informed choices?

To illustrate this article, I chose the pictorial work of Arcimboldo, an Italian painter from the 16th Century. In his work, cultural and natural elements interpenetrate. I chose L'Ortolano as an allegory to metaphorize the tendency toward excessive eating practiced in the end of life due to ignorance of the signs, symptoms, and needs of that phase.

At the core of our care philosophy, gifting through food means, beyond the inherent nutritional dimension of eating, giving within the relationship. When I make you a soup, I am offering you what I am through that gesture of care.

In this sense, how can we balance our need to care, the cultural values we convey, and the specific needs at the end of life?

Approaching the dying process with a well-informed perspective allows to adjust our care to the needs, physiology, and current metabolism, contributing to reducing the anxiety that afflicts caregivers and directing informed choices that favour greater comfort and quality of life.

As described in the article by 'Expresso' (in Portuguese. To read the full article, a subscription to Expresso is necessary), and as I clarified in the podcast, at the end of life, the focus of care should centre on accompanying the body in what is the natural process of death, which manifests an inherent wisdom.

At this stage, there is a decrease in nutritional and hydration needs. Metabolism will slow down, organs will gradually reduce their functions and will increasingly struggle to process ingested food and water, which can accumulate in various forms, generating toxicity. Due to the decreased level of metabolism, it’s common for liquids to accumulate as oedema. With kidney failure and the risk of fluids getting into the lungs, it’s obviously more comfortable to die slightly dehydrated; it's physiological.

In this sense, oral care is extremely relevant, because it tends to alleviate the feeling of dry mouth rather than increasing water intake. This care involves small measures such as frequently moistening lips and ensuring they are well hydrated, ensuring good mouth hygiene, seeking a more alkaline environment to minimize the proliferation of microorganisms.

At the end of life, several changes occur in taste, it’s more difficult to swallow/more dysphagia, which sometimes requires choosing foods with a pasty consistency or adding thickener to liquids.

One of the important principles regarding food is that less is more, and it’s preferable to eat small quantities of food, adapting their consistency, retraining the palate, and creatively experimenting with new aromas and flavours.

In this sense, the idea that eating, especially great amounts, is a sign that the person is recovering can be a catalyst for discomfort because it proves inappropriate to what the body actually needs, showing greater difficulty in processing food.

Quadro L’ Ortolano, de Arcimboldo
L’ Ortolano, by Arcimboldo

Unblocking our imagination for food care

According to the Philosophy of Palliative Care, she aimed "to add life to their days, not days to their lives." (Cicely Saunders, founder of the Hospice Movement).

Our focus is on the person’s quality of life, adjusting their needs to that phase, and this does not constitute disinvestment. Every option is taken based on symptom control and the benefits in terms of comfort. This means that there is no pre-established protocol; measures must be adapted to each person, in each particular phase.

In Portuguese society, one way we express care, dedication, love is through food. So often, I hear families express the fear that if the person does not eat, they’ll die faster. The person is dying due to the progression of their clinical condition, not because they stopped eating.

It’s important to relearn to listen to the body and take care of other dimensions related to food, such as rituals. Eating is highly performative and can continue to be so if we let ourselves be guided by the creativity of flexibly adjusting meal times, their composition, the rhythms, and ways in which they occur. Because the crucial ingredient that cannot be missing is our loving, attentive, and serene presence.

Stimulating the sensory experience is important; it’s what makes us travel in our inner landscapes but also allows us to expand them. Cinematography exemplifies the interweaving of food, memory, and the joy of living. I think of the Greek film Politiki Kouzina by Tassos Boulmetis, the American Ratatouille by Brad Bird or the Indian The Hundred-Foot Journey by Lasse Hallström.

The biography of our body and soul is profoundly alimentary. And food is one of the keys that allows us to access the vast source of our inner landscapes, places of connection with the lived history, recalled/revived by the heart in the present moment. As Viktor Frankl stated, "to have been is a form of life and one of the most effective."

On the other hand, Viktor Frankl also refers to the plasticity of the human being in the search for the meaning of life, observing that it’s possible to maintain the meaning of life in all forms of existence, continuing to explore new possibilities and configurations.

I fondly remember a conversation I had with my cousin André, at the time a young medical student with so much ancestral wisdom. I was accompanying my father at the end of his life and I was grappling with heavy points of tension between medical and nutritional indications, and food as a source of pleasure, one of my father’s favourite. André calmed my heart, reminding me of what was truly important in that phase – adjusting the amounts to the current metabolism and intensify the flavours that bring us life, the ones that leave us with a twinkle in our eyes, (“Um brilhozinho nos olhos”) as sung by the poet Sérgio Godinho.

Diet, by Afonso Cruz

No, João

said the mother of my neighbours,

we can’t have a firefly.

I don't even know what they eat...

if they give light,

they probably only eat light bulbs,

said Manel.

I dedicate the illumination of these words to Feciano (as we all called him)... a good friend, one of the best my father had, and that we shared in the course of life. The time of his transition has come... I recall the feasts of the slaughter, the pork greaves, the miraculous small apples he delighted me with, and that belly hug that meant the world to me, palmate and enjoyed.

(November 16, 2023)


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