Eating issues

The results from the interviews showed that loss of appetite is a common side effect experienced by oncological patients which is related to change in or loss of taste and smell. Participants described foods/drinks as having “paper”, “rotten”, “metallic” and “weird” tastes. This is a problem patients dislike, and they do not have any solutions for. However, because patients understand that eating well is part of their recovery process, they try their best to eat even when they do not find the meal appealing. Patients sometimes try to solve this problem by adding spices or more salt to the food; however, usually, it is without success as the food still tastes unpleasant. The following quote from a UK patient exemplifies such issues:

When I first started reintroducing foods, rice puddings tasted all right but after a few weeks I could not eat it anymore because it tasted very horrible. Because of damage to the throat, I found tomato soup too spicy, so I was on chicken soup and mushroom soup was one of those things that was OK for a while and then it tasted terrible after a while (…) Nothing I ate tasted right. There is a difference between things tasting horrible and things not tasting right. Six months after my last treatment, my taste is starting to come back, had an orange yesterday and it tasted like an orange. I have also had a Big Mac burger and it tasted alright. It is odd, some things taste right and some things don't. (Male, patient, 59 y.o., UK).

The study also showed that caregivers are aware of the importance of good nutrition for the patient and place high value on it. From their perspective, the patient’s weight loss is one of the main concerns. In all three countries, we have observed at times an almost “obsessive” approach by caregivers to eating, considering themselves a failure if the person they are caring for is not eating as well as they would expect to. In Poland and the UK, caregivers want their loved ones to eat, even if the food is not the healthiest (for example, too fatty or too sweet). In their opinion, it is more important for a person who is unwell to eat something than to eat a balance diet all the time.

The interviews with caregivers showed clearly that nutrition also has great emotional significance to them. It is not only a way for caregivers to provide adequate nutrients, but also a way of showing their love and care. Therefore, patients’ rejection of caregiver-prepared meals is not only seen as a problem of potential nutrient deficiency, but also (sometimes on a less conscious level) can be perceived emotionally as a sign of the patient’s ungratefulness to the caregiver’s efforts or perhaps a feeling that they had not done their role well enough. Therefore, patients’ problems and complaints about meals (e.g. about lack of taste or bad aftertaste) cause caregivers’ frustration as they feel that they are not appreciated, and their efforts are in vain. They sometimes describe the behaviour of their unwell relatives in the context of food as “acting like children”. They often feel overwhelmed, helpless, anxious and try to do their best to help, but usually without success. This result shows that caregiver’s emotional involvement often does not allow them to perceive patients’ eating problems rationally, but they perceive it emotionally and egocentrically which leads to their frustration. The following quote from a caregiver in Poland demonstrates such frustrations:

Because many times it's like: Oh, I would eat cauliflower soup, or broth, or this, or that. I say, "Okay, that's cool, it's not that much work. I'm at home all day today, I'll put the pots on and get it done." And then it comes to this: "But I only need a spoonful, just to try it out." I say, "But you wanted it."—"But I don't want it anymore." And then the question: "But why don't you want it, aren't you hungry?"—"I'm hungry, but I want something else." And then it's mostly browsing the fridge, some kind of white cheese sandwich, some kind of yellow cheese sandwich. As for cold cuts, preferably some sirloin, white bologna, oh, yeah—"I could have that day in and day out". Tastes have changed terribly. (…) As if she were pregnant. (Male, 47 y.o., caregiver, Poland).

The role of food can also change during treatment. Patients, caregivers and HCPs alike pointed to the important function of food during treatment. Food for a cancer patient may change its function from time to time. During cancer treatment, food is a necessity, something that has to be eaten in order to become healthy again and to fuel the body—the pleasure of it is lost. Food becomes part of the healing process, perceived as medicine, with products on the market often looking like medical foods. In the view of a Spanish caregiver:

And usually in these patients it is forgotten the quality of life, the pleasure for food, because there were people for whom food is a pleasure, and that suddenly with the disease it is lost … they can no longer eat what they ate before … (Female, 51 y.o., caregiver, Spain).

Opinions about products on the market

The study showed that while there are products dedicated to cancer patients available on the market, there is a limited variety, they are mostly sweet products and are usually in the form of shakes. The unavailability of other types of food products on the market (e.g. savoury flavours or in formats other than shakes) does have an impact on patients’ pleasure of eating according to the study findings.

In general, patients in all three countries expressed the need for a bigger variety of products for cancer patients. Products dedicated to them will make them feel noticed and valued. Patients were disappointed with what was recommended or prescribed by HCPs as these were mostly milkshakes. Even though these milkshakes are very nutritious and high in calories, they are always very sweet and can have undesirable taste/aftertaste, which was also confirmed by caregivers and HCPs. Cancer patients from all three researched countries expressed their dissatisfaction and feeling of being excluded and neglected by food manufacturers as a group.

Foods for cancer patient’s available on the market are associated with meals for the very sick, old people in the terminal stage of their illness or almost dying (especially in Poland) and patients suffering the hardest side effects of their treatment (in Spain). Therefore, the products available on the market are not perceived as part of everyday diet, rather like another medicine, as something good for a short period, to get an energy and nutritional boost during the most burdensome part of their treatment. However, cancer patients do not want to have a food perceived as a medication as part of their everyday lives, as expressed by two patients from the UK and Spain respectively:

I see food differently now. I certainly did not see food as pleasure because there was no pleasure in it. I saw food as a necessity. Various people actually told me, you have just got to see food as a medicine and three times a day, you have got to have medicine in the form of food. I am not sure that worked but I got through it. Now that I’ve been off treatment for over a year, I am gradually beginning to see a bit of pleasure in food again. There is the pleasure of being normal, which is very strong, it is the sensation of feeling I am no longer ill because I am eating again, there is the pleasure of being able to share a table with my wife or friends and there is also the pleasure of exploring and experimenting again. (Male, patient, 60 y.o., UK).

When I was in the hospital, they gave me a similar product (shakes). I found the taste horrible, and the shakes seemed quite expensive to me. They were usually given to people in the hospital, and I didn't continue taking them after leaving the hospital. (Woman, patient, 68 y.o., Spain).

Cultural differences among countries for food perception

There were some differences between countries in terms of importance of the pleasure of eating. In Poland, the pleasure of eating seemed to be crucial—the pleasure of greasy, unhealthy, fried (which is not usually allowed during treatment) meals and alcohol. On the other hand, eating out was not as important as in the UK and Spain. Pleasure of eating in those countries was more connected to its social aspects—especially in Spain where food is a part of social life. Maintaining a social life seems to be very important—social gatherings with family/friends are part of normal life and food is at the centre of it.

We don't realise how important food is until it is taken from us. This is not just from an energy or nutritional point of view, but the social aspect of eating and just the day-to-day aspect of eating like being able to go and have a cup of tea and cake with friends or go out for a meal. All that is taken away from you because you cannot eat, or you don't want to eat, and it is just huge and very stressful. I spent all day wondering what I could eat and what I wanted to eat. (Male, patient, 60 y.o., UK).

Characteristics of the ideal food products

Apart from pleasure, other important characteristics of food for cancer patients in all three countries were variety, practicality and naturalness. As previously stated, most of the products on the market are sweet milkshakes, but patients need more flavours/tastes options to choose from. Products should also be practical. Most patients and caregivers are usually absorbed by all the side effects of the illness on a patient’s life and do not have the time to prepare complicated meals. They also do not have the knowledge and abilities to balance the meals that would reduce taste alterations. For a patient, sometimes even heating up a simple soup could be a challenge.

There are times during treatment when you wouldn't get out of bed to do anything, not to see what's in the fridge, not to cook it or not to eat. If I can't get up, my husband is working, my kids are in school, what can I do? Then I have looked for services that send me food at home. (Female, patient, 53 y.o., Spain).

Nutritional composition is crucial while choosing and preparing meals. Most patients are looking for a healthy food product on the market. They care about nutritional composition in terms of fat and, especially, sugar. They try to avoid sugar and “added sugar” products. The healthy and natural characteristics of food are the key factors for them. They look carefully at the ingredients lists of every product to avoid putting additional “chemicals” into their body. This is not limited to the product itself, but also its packaging. Foods should be easy to store and prepared at any time. The healthy lifestyle seemed especially important for the participants from the UK; they seemed to have more knowledge about food and a healthy lifestyle in general than participants from the two other countries.