Appetite for life. A cancer patient needs to eat. Episode 15

Monika Rachtan
Good morning, Monika Rachtan. I would like to welcome you to another episode of our podcast "Patient First". Our guest today, and your guest today, is Aleksandra Kapala, MD, PhD. She is a clinical oncologist and a specialist in clinical nutrition. A very warm welcome to you, doctor.

Aleksandra Kapała
Good morning. Good morning to you.

Monika Rachtan
Today we will talk about clinical nutrition, but we will focus on oncology patients. Your doctor is both an oncologist and a specialist in clinical nutrition, so we will combine these two topics today.

I have delved into the data which shows that up to 20-30% patients are malnourished on admission to hospital. However, I would like us to clarify what this means. Are patients malnourished because, for example, they didn't eat breakfast, fearing examination? Or is this a more global problem?

Aleksandra Kapała
This is a global problem and one could say that it is a disease in itself. It is an additional medical diagnosis that we write down to the patient alongside a diagnosis such as cancer. Put simply, we do not need any sophisticated diagnostic tools for this. A patient who is malnourished is one who inadvertently loses weight, i.e. does not follow any diet or exercise, and yet loses weight. It is also a patient who has an appetite problem, eating little. If we compare the amount of food consumed now and, for example, a year ago and notice a decrease and the weight goes down, we can conclude that we are malnourished. As for the time criterion, for some patients it only takes a few weeks to lose weight significantly, for others the process takes longer, even six months or a year. It all depends on the pace of the disease.


Monika Rachtan
Doctor, let me remind you that our programme is primarily aimed at patients. We want to educate them, but we also want to speak their language and ask questions that interest them. There are no silly questions here.

Aleksandra Kapała
Of course, there are no stupid questions, just sometimes there may not be quite right answers. I will endeavour to give wise and understandable ones.

Monika Rachtan
This is a question that may be on the minds of patients. Can an overweight or obese person be malnourished when they go into hospital?

Aleksandra Kapała
Definitely yes. This is something that is difficult for not only patients but even doctors to understand. Since this is an educational programme, we all need to learn. In terms of the criteria for malnutrition, we are talking about two main areas. The first relates strictly to body weight, i.e. loss of more than 5% in six months or more than 10% in any period of time. The second area is loss of appetite, which we will probably talk about later. But let's focus on that 5% over 6 months. If a patient weighs 120 kilograms and has a cancer diagnosis, especially of gastrointestinal cancers, for them 5% is only 6 kilograms. This is not much. What's more, the patient may not even notice it, especially if he has a high body weight. He may even think, great, I'm finally losing weight.

Aleksandra Kapała
Yes, exactly. He may be happy that he's finally starting to lose weight, even though he's been unsuccessful for the last few years. He may think: "I'm not doing anything and I'm losing weight. My most active muscle is the one from my thumb that changes channels on the TV, and I'm losing weight." And then we have 120 kilograms minus 6, which gives us 114 kilograms. By any standards, the patient is still overweight. But in the context of oncology, such self-imposed weight loss is very dangerous and always leads to complications, increased risks in cancer therapy and other negative events, which we will probably talk about in a moment.

Monika Rachtan
Doctor, you said that a nutritional status assessment is like a second diagnosis. That is, next to the diagnosis, for example, "breast cancer," it should say "malnutrition." I'm sorry, but I've never seen such a description on a discharge card. You also said that this is easy to do, that you don't need special scientific tools to do it. So on what basis should the doctor assess the patient's nutritional status?

Aleksandra Kapała
Exactly, this is what the doctor should do. Firstly, take an interest in the patient's body weight. We oncologists do this naturally, because we need to know the patient's body weight in order to calculate the dose of drugs. This is basic. But we should focus not only on the number of kilograms, but also on the rate of this loss and in what time it occurred. This is very important information. If the patient meets the criteria for a diagnosis of malnutrition, this should be on the discharge card, because malnutrition has its own code in the ICD-10 classification and it is a disease in itself. Just as we write hypertension or diabetes on the chart, 'malnutrition,' should also appear if such a condition is indeed present.

Monika Rachtan
But how is the patient supposed to know that the doctor has made this assessment? Is it enough that he has been weighed and measured? I can imagine a situation where a patient is admitted to hospital, this is the first visit and this procedure has been carried out. At the next visit he will be weighed and measured again. So how are patients supposed to know this?

Aleksandra Kapała
As they say, the devil is in the detail. The most important sign for the patient should be whether the doctor has taken any interest at all in his or her body weight and appetite. These are two key questions that should be asked at every oncology visit: "Are you losing weight?" and "How is your appetite?". If the doctor notices that the patient is losing weight and has problems with appetite, he or she should refer the patient to a dietician. This is a profession, this is a specialist trained within the health system, not only in Poland.

Monika Rachtan
Doctor, you said that assessing a patient's nutritional status is like a second diagnosis. That is, if the patient is malnourished, this should be included alongside the main diagnosis, for example "breast cancer + malnutrition". I'm sorry, but I have never seen such a notation on a discharge sheet. I say this, not just thinking about cancer patients. So how is the doctor supposed to make this assessment of nutritional status?

Aleksandra Kapała
What the doctor should do is pay attention to the patient's body weight. We, as oncologists, need to know this in order to choose the dose of medication correctly. We need to focus not only on the weight loss itself, but also on the rate of this loss and the period of time over which it occurred. If the patient meets the criteria for malnutrition, we should include this on the discharge chart. Malnutrition has its own code according to the ICD-10 classification and is treated as a separate disease.

Monika Rachtan
And how is the patient supposed to know that such an assessment has been made? Does the fact that it has been weighed and measured already mean that?

Aleksandra Kapała
The devil is in the detail. A key signal to the patient should be the doctor's interest in his or her body weight and appetite. The doctor should ask two questions: "Have you lost weight?" and "How is your appetite?". If the patient is losing weight and has appetite problems, the doctor should refer the patient to a dietician.

Aleksandra Kapała
All over the world, a nutritionist is the person who can accurately assess a patient's nutritional status and make the right recommendations. Not only body weight is taken into account, but also parameters such as the amount of fat, muscle, water and bone tissue. This information determines the type of malnutrition.

Aleksandra Kapała
In oncological disease, nutritional status affects the patient's life expectancy, risk of recurrence and complications of treatment. Therefore, in addition to assessing body weight and appetite, doctors should also take into account other parameters such as inflammatory markers, renal and liver function and the presence of diabetes.

Monika Rachtan
Intervention.

Aleksandra Kapała
Intervention, we need to intervene. And this is almost always the case. This information goes back to the doctor, because if we find that the patient is in a very poor nutritional state, he or she may need nutritional hospitalisation. We may need to insert a gastrointestinal access, a kind of gastric probe, mounted to the stomach through the abdominal shell. Or parenteral nutrition, which requires special venous access. At this stage, a dietician alone is not enough. Cooperation with a doctor is required, who in Poland has the right to issue referrals, prescriptions or referral to hospitalisation.

Aleksandra Kapała
Most patients who lose weight and have no appetite can be catered for with dietary advice supported by nutritional supplements. This covers around 90% patients. But we also have about 10-15% patients who will need more advanced nutrition. In these cases, again, the doctor must step in.

Monika Rachtan
I have a question because there is a lot of information about the nutritionist and the nutrition team. I am wondering what this looks like in Poland. I know that there are such teams in the National Institute of Oncology in Warsaw, in Gliwice, in Krakow. But what about small towns where there are only one nutritionist and all cancer patients are lumped together? What is that patient supposed to do? What should his or her family do if they are aware of the need for such a dietetic assessment? Should he pack his bags and go to the National Cancer Institute in Warsaw?

Aleksandra Kapała
If it is really not possible to find help locally, then yes, I agree. But going back to the beginning of our conversation, there is such a thing as the 'Healing through Nutrition' programme and the 'Good Nutrition Practice Hospital' certification. I was an expert in this programme. We have certified dozens of hospitals in Poland over the years. We check very carefully how the issue of dietetics looks like there. The number of dieticians, the type of advice they give, it is all under the magnifying glass. Mrs Monika, you have rightly pointed out the problem. The big centres have dietetic teams, but the further away from the big cities, the worse it gets. The European Food Safety Agency, or EFSA, says there should be one dietitian per 50 beds in a hospital. We saw hospitals with 700 beds that only had one or two dietitians. And what's more, they were often reassigned to work in the kitchen, which is a curiosity.

Aleksandra Kapała
This is incomprehensible, as this is not the case anywhere in the world, except perhaps in Third World countries. The unregulated status of the dietetic profession in Poland makes hospital directors reluctant to employ these specialists. In Poland, practically anyone can call themselves a dietician. Therefore, please, check your diplomas. A real dietician is a person with a five-year degree, not someone with a two-week course on the Internet or a celebrity promoting some diet.

Aleksandra Kapała
This is one of the main problems. Moreover, in Poland we train a lot of dieticians with the right diploma, but they cannot find work in hospitals. Instead, they go to private companies or change professions. We are working with various scientific organisations to change this. For example, there are already dietetic teams in hospitals in Bydgoszcz, Gdansk, Szczecin, Krakow or Warsaw. But this is not enough, we need to go further.

Aleksandra Kapała
The doctor should make the decision and refer the patient to a dietician who can take proper care of the patient. In situations that require cooperation with the doctor, we act together. This is the right model of management.

Monika Rachtan
After all, an oncologist who has 40 patients in an outpatient clinic in a day does not have time to think about what that patient should eat. That's what a dietician is for. Isn't it?

Aleksandra Kapała
That's right, that's right. This is unrealistic in our conditions. I myself, with 30 patients, for example, cannot take the time to analyse their nutrition in detail for each of them. There is a lot more at stake here than just weight and height. You have to take a nutritional history, establish what the patient has eaten today, calculate calories and compare this with the requirements. And this is still in the context of the disease, the severity of the disease and the planned treatment.

Aleksandra Kapała
In some centres we additionally use calorie tests, which are precise but also expensive. They are based on breathing tests and determine the exact calorie requirements. For example, when we carry out such a test, the machine will tell us that the patient needs exactly 1,326 calories. This is very important, especially for patients in intensive care units. As you can see, this is a really long appointment. In fact, to give factual advice, we need between 30 and 60 minutes.

Monika Rachtan
So I ask on behalf of patients: what should a patient do who lives in a small town where there is no oncology team and no possibility of commuting to Warsaw? Should he go privately to a dietician? Can he say to his doctor: "Dear doctor, send me somewhere or let's do something together"? Because I can see that there is something wrong with my nutrition. How can the family help in this situation? Especially when a patient in an advanced state of illness is unable to help themselves.

Aleksandra Kapała
Fortunately, when it comes to education about malnutrition, there is actually a lot of material available. For example, on the pages of the Polish Society for Enteral and Parenteral Nutrition, patients can find a wealth of information. In addition, the National Institute of Oncology in Warsaw offers free counselling five days a week. A referral to the metabolic disease clinic is required. We accept a really wide variety of patients, sometimes even without a referral. In urgent cases, you can also use our 'urgent surgery'. This is a place where a patient can go immediately after seeing a surgeon who determines that surgery is not possible due to the patient's poor nutritional status.

Aleksandra Kapała
However, teleportation is unfortunately limited at present. Nevertheless, I receive calls from doctors all over the country. If any of them have a patient they are not coping with and need help, you can call us. We cannot save the whole world, but we are working on systemic solutions. For me, after 20 years of working in clinical nutrition, this is simply a human right. Poland has signed the relevant convention, so every patient, everywhere in Poland, should be guaranteed adequate nutritional care.

Monika Rachtan
I will ask again from the perspective of a patient who is lying in hospital and gets one slice of bread or a small butter. We all know these plates from various pictures on the internet or from experience. So how can a patient think of his nutrition as a human right when he gets such meagre meals in hospital? What can be done about it?

Aleksandra Kapała
OK, so let me make one thing clear straight away: catering in hospitals does not fall under the remit of the food teams. These are separate, large tender contracts in which the catering companies participate. The decision on the choice of the tenderer is made by the management. We as the nutrition team could only consult on the parameters of the diet. At our institute, there are twenty different diets that a patient can order. We also set the parameters for calories, proteins, fats and so on. But we have no control over the quality of the catering that goes into the hospital. And I realise that this is a problem nationwide.

Monika Rachtan
Now I would like to ask a very important question. If malnutrition is a disease, why is nutritional status so important to the patient's subsequent fate?

Aleksandra Kapała
Exactly, and here we are broadening the definition of poor nutritional status. We focus on malnutrition, but obesity is also an issue. Both malnutrition and obesity affect the outcome of oncology treatment and the length and quality of a patient's life. Both conditions increase the risk of surgical and other complications. Therefore, the patient may lie in hospital for longer, which increases treatment costs. And, in the worst case scenario, it may even result in the discontinuation of oncology treatment because the patient will not be fit for it.

Aleksandra Kapała
We need to be aware of some numbers. If a patient loses 40% of their body weight, the risk of complications is 100%. This means that we are treating extremely debilitated people and the risk of complications is unfortunately built into what we do. So how can I give a patient the full dose of therapy? In oncology, we usually only have one chance for effective radiotherapy or chemotherapy. I want to optimise the conditions so that the patient is in the best possible biological state. This increases his chances of survival, fewer complications, a shorter hospital stay and a lower risk of recurrence.

Monika Rachtan
I will still ask about these complications. You said that there is a 100% chance of them occurring when a patient loses 40% of body weight. A lot of people probably think these are some insignificant things, like hair loss or rashes.

Aleksandra Kapała
No, the complications are serious. Sometimes they are even fatal: sepsis, non-healing wounds after surgery, complications after procedures that require another operation. And the risk of infection is high, from pneumonia to sepsis.

Monika Rachtan
Such pneumonia does not just mean some coughing. These are often very widespread inflammations that can be fatal.

Aleksandra Kapała
Exactly, these complications can shorten a patient's life. It is easier to spend about 150 zloty a day on nutrition than 1500 zloty on antibiotics. I would like you to know this, because the cost of antibiotics can amount to several tens of thousands of zloty a year.


2 / 2

I have read the passage given carefully. Below is a revised version of the text:

Monika Rachtan
We must not underestimate the side effects of drugs on the patient's body. If they are not necessary, it is better to avoid them. Now I would like to ask using a concrete example. Let's assume that my grandmother is admitted to hospital and finds out that she has cancer. The doctor has acted in an exemplary manner, referred her to a nutritionist and it turns out that nutritional support is needed. How can I help her? Grandma will probably be given certain measures that she will need to follow at home. If she can eat normally, should I pay particular attention to her diet? What can I do to help her?

Aleksandra Kapała
This is an excellent opportunity to involve the family. In an ideal scenario, every cancer patient should receive dietary advice - even if it is only about healthy eating habits. But unfortunately, such situations are rare. In most cases, patients require more comprehensive nutritional support over a long period of time. Every patient is different, so the approach must be individual. And as a family, the most important thing is to follow the doctor's and dietician's recommendations. You also have to ask what the recommendations are and whether the right nutrition has been provided. If the patient is elderly, as in your grandmother's case, you also need to take their eating habits into account and adapt the recommendations to their ability and comfort.

Monika Rachtan
So it could also just be a temporary situation.

Aleksandra Kapała
Yes, there are other areas that require specific recommendations and work. What else should the family know? It seems crucial to me that the situation in oncology is very dynamic. If things are good today and a patient leaves the facility with an 'OK' status, this does not mean that the situation will not change. An oncological disease can dramatically affect a patient's nutritional status in just a few months. If you see at home that something is starting to go wrong, that your health is deteriorating, go back to the dietician. Incidentally, I would advise against choosing nutritional preparations yourself - there are hundreds of them on the market and you need to know what to suggest to whom.

Monika Rachtan
From what you say, it makes me think of the importance of the patient's role in treatment. It is not enough to just come to the doctor and trust that he will do everything for us. It is how we observe ourselves and follow the doctor's recommendations that is key.

Aleksandra Kapała
Exactly, we are all part of the system. The doctor, the patient, the nursing team, but also the NFZ payer, the Ministry of Health, the hospital director - all make up this multifunctional organism. To make it all work, all parties need to understand each other's needs. When it comes to clinical nutrition, we are still at the beginning of the road, even though 20 years have passed.

Monika Rachtan
But we are doing something, something is happening nonetheless.

Aleksandra Kapała
Yes, everything is in motion.

Monika Rachtan
It is worth emphasising that everyone must be involved in the process: the patient, the family and also the doctors. The doctor alone cannot do everything. What is the situation of a patient who has lost the ability to eat normally as a result of oral cancer surgery? Are there institutions that teach these patients how to cope with this new situation? Where can they go?

Aleksandra Kapała
First of all, it is important to understand the concept of inability to swallow, which has many causes. Tumours of the head and neck organs are one of the reasons by which swallowing food becomes very difficult. For example, the inability to chew, bite or swallow food is common in cancers of the head and neck organs, such as cancers of the tongue or mouth. If a patient consumes less than 60% of daily requirements and this situation persists chronically, he or she has an indication for the insertion of a gastrointestinal access. This may be a probe, which is inserted through the nose into the stomach to administer a nutritional mixture. Another access is a gastrostomy, inserted directly into the stomach. We perform many of these procedures each year. Which access is appropriate is decided jointly by the doctor and the clinical dietitian. Sometimes my team calls me with the patient's information and I decide on the next steps.

Aleksandra Kapała
Exactly so! This collaboration between specialists should look just like that. As for my competence and yours, everything works then. The dietician can keep the patient on an oral diet, even a modified or liquid diet. We can also create a valuable diet in liquid form. In some cases, this is sufficient. In others, we may additionally use oral nutritional supplements. But sometimes access to the gastrointestinal tract becomes necessary.

Monika Rachtan
I would like to come back to the question of how to deal with a patient who goes home with this kind of access. It is probably a challenge for the family too.

Aleksandra Kapała
Definitely, the first thing: we do not leave the clinic unless we have a referral to the nutrition clinic. This is a team of specialists who take care of the patient's nutrition at home. The diets are fully reimbursed. The specialists come to the patient's home and administer the diet, for example for a gastrostomy. The patient leaves our clinic with a referral and complete recommendations. Usually, these recommendations are taken over by the nutritional clinic and implemented at home.

Monika Rachtan
So someone comes and explains everything to us at the beginning and helps us?

Aleksandra Kapała
Yes, we train the patient before they leave the clinic. We teach how to care for the access, because this is crucial. Inserting the access is one thing, but complications can start later if the care is inadequate. If we don't do the training in the clinic, the specialists at the nutrition clinic will do it. They take charge of the access and the feeding process. The patient himself or his family administers the diet. It is simple: there is a tube and a syringe, and the feeding mixture is administered into the tube.

Monika Rachtan
I recently read a comment on a Facebook group from a daughter who writes that her father has lost the ability to eat normally after cancer treatment and is fed through a tube. She wrote that she doesn't see the point of it all anymore. As someone with many years of experience, what would your doctor advise in such a situation? Who should we go to?

Aleksandra Kapała
The first thing that comes to mind is a psychologist or even a psychiatrist to treat depression. After all, if the oncological disease is progressing and further ailments occur, including artificial access to the gastrointestinal tract, the patient may not cope mentally. It is therefore important to have the support of a psychologist or psychiatrist who will prescribe antidepressants.

Monika Rachtan
Is antidepressant treatment safe for a patient who is already on cancer treatment?

Aleksandra Kapała
Yes, there is usually no collision. We treat many patients simultaneously for both depression and cancer.

Monika Rachtan
In the context of weight loss in our society, we tend to see it as something positive. But in a cancer illness, every kilo lost is at a premium, right?

Aleksandra Kapała
Yes, exactly. If we start losing weight for no apparent reason, this is a signal that something is wrong. It could be cancer as well as other disease entities. Spontaneous weight loss is an alarming symptom. In addition, losing weight during ongoing cancer treatment contributes to a poorer prognosis and a higher risk of complications.

Aleksandra Kapała
Precisely, any complications of chemotherapy take longer and are more severe in malnourished patients than in those of normal weight.

Monika Rachtan
This will probably be my last question about nutrition. Should the PCP be involved in this matter, especially if we are cancer patients? Is it worth going to him or her?

Aleksandra Kapała
We would like the PCPs to support us in this process. This is the part of the system that I think I even left out in my previous speech. Communication between GP and specialist is very important. Nevertheless, in our experience, patients tend to be sent back to the referring units with the thought "they will take care of you there". We expect far more from GPs.

Monika Rachtan
At the end of our conversation, what should our listeners remember from what you said? What are the three most important things?

Aleksandra Kapała
Firstly, if you are starting to lose weight spontaneously, start diagnosing yourself because something worrying is going on. Secondly, fight for good nutritional status during cancer treatment. Ask a dietitian for advice, especially if you are losing weight. Thirdly, let's be vigilant and involved, working together as part of a system. Let's make sure that dietitians in hospitals show up, because both pressure from professionals and patients can change this situation. This is something I very much believe in. Maybe I am an idealist, but that is what I believe.

Monika Rachtan
There are various campaigns underway, but...

Aleksandra Kapała
I believe in...

Monika Rachtan
Yes, I think it's worth a try.

Aleksandra Kapała
This is an important thing to remember: nutritional status changes dynamically. That is to say, if things are considered good now, this does not mean that it cannot change for the worse, but also for the better. If it is bad now, it can also be improved.

Monika Rachtan
I think cancer patients, if they don't have a scale at home, should get one. It often happens that people forget to weigh themselves, especially if they have an obesity problem. When the diagnosis comes, I think it's worth getting one.

Aleksandra Kapała
Definitely yes. The scale is also in every doctor's office. I would like my patients to understand this. Going on the scale should be a habit, just like examining the abdomen or auscultating the lungs. It should also be an element of curiosity for the patient that they want to know how much they weigh.

Monika Rachtan
My programme partner is the Institute for Patients' Rights and Health Education, which promotes the humanisation of medicine. We have already talked a lot about this topic, but can I ask you to summarise a few words? What does the dehumanisation of medicine mean to you?

Aleksandra Kapała
I would like to focus on my area, which is clinical nutrition. As I mentioned earlier, proper nutrition is a human right. It is not just a medical issue, a diagnosis or an ICD-10 code; it means much more. Nutrition has many functions: not only does it provide the body with protein, vitamins and various other components, but it also creates social situations. Sitting at the table with loved ones and enjoying a meal gives us respite and relaxation. To take this aspect away from the patient is very hurtful. Being able to satisfy these needs is therefore very important, even for people undergoing cancer treatment.

Aleksandra Kapała
My dream is that even in situations where we are battling an incurable disease, we should be able to take some of the suffering away from the patient in this very area. Treatment is not just about an operation or administering a drug, but also about meeting many other human needs. Only then does treatment have a chance of being effective.

Monika Rachtan
I hope our conversation today has convinced everyone that it is worth paying attention to your weight at the doctor's surgery. It is also worth consulting a nutritionist if necessary. I hope that every oncology patient who listens to us will sign up for such a consultation.

Aleksandra Kapała
I also invite you to visit the Institute if you feel the need. In particular, I appeal to patients with tumours of the gastrointestinal tract or head and neck organs. Here you will receive professional advice in a safe manner. And I would like to warn you about "magicians from the internet", who you should avoid. I wish you good health and all the best.

Monika Rachtan
Thank you for accepting the invitation and for participating in the programme. Thank you also for your attention.