Miroslav Světlák: "Each of us will deal with end of life, regardless of the cause."
He says that a machine, or rather the much talked about artificial intelligence, can never replace human contact. Yet doc. PhDr. Miroslav Světlák, Ph.D., Head of the Institute of Medical Psychology and Psychosomatics at the Faculty of Medicine of Masaryk University, received the Czech DIGI@MED Award, awarded annually by the biotechnology company Roche for innovative digital and mobile solutions in the field of healthcare. The judges of the competition praised MOU's Mind Care app, which he and his team developed with the ambition of bringing mental health support principles literally to people's homes through eight-week therapy programmes. At the current stage, only patients at the Masaryk Cancer Institute are able to use the app, but the authors' goals go beyond a single diagnosis. Although the words of Associate Professor Světlák convey concepts such as humanity and empathy, he also sees enormous potential in eHealth, or the use of information technology in healthcare, which can ultimately benefit both healthcare professionals and patients. How to fulfil it? What kind of psychological care do doctors provide to cancer patients? To what extent can computerisation relieve overstretched medical staff? And is it even possible to relax with a mobile phone in hand?
30 Mar 2023
When did oncology care start to place more importance on psychology and the psychological well-being of patients?
Several factors contributed to this. The first is that the survival time of people with cancer has increased significantly with the development of medicine. Cancers that thirty years ago people could die of within a few months are now chronic diseases that they can live with for another five to ten years. Another factor is that, based on new scientific findings, even hard medicine is increasingly realizing that the psyche has far-reaching implications for both the onset of disease and the course of illness and the healing process. We have the concept of epigenetics - the last twenty years of research shows that how we think, what we eat and how we move has an impact on how genetic information changes and how we change over the course of our lives. And I should also mention the evolution of society towards greater medical knowledge as a result of which patients' rights are increasing and they want to be communicated with more, explained more. So psycho-oncology has been talked about for some seventy-eighty years, but the change in psychological support for cancer patients has only been happening in the last, say, twenty years.
Is it an easy change?
It is a slow transition, more talked about and written about than actually done. When you talk to doctors in the outpatient clinic, you find that they have eight minutes per patient, that they have a pile of paperwork, and that doctors may not even believe in the principles sometimes. Although the Masaryk Cancer Institute is way ahead of the game. It is a European flagship in this respect, really several floors up compared to other hospitals I have had the opportunity to experience.
“We haven't yet gotten used to medical professionals naming our needs.”
What does psychological care for cancer patients look like nowadays and what does it lack to the ideal?
Nurses are most often in contact with the patient and then doctors. When they see that the patient is showing signs of mental illness, discomfort or stress, they usually refer the patient to a psychologist or psychiatrist. This, however, alludes to the fact that not all doctors trust psychology and psychotherapy, or that they do not always recognise this need. According to some research, only about a third of cases where the patient is under great stress are recognised. And when they do recognise stress and call a psychologist, we find that there are not enough of them in hospitals. For example, there are only a few full-time psychologists for hundreds of patients at the Yellow Hill (Masaryk Cancer Institute - author's note). Yet the moment patients discover that the care works - just the fact that someone comes to talk to you - the need increases.
What are patients' expectations of psychological care and, say, emotional support?
I guess that's individual. But generally speaking, patients - or rather people in the role of patient, because we are all future patients (smiles) - are often in a kind of subservient position towards the medical staff. We are polite, we don't want to be a nuisance, perhaps we have some fears, and we have not yet got used to naming our needs to the medical staff.
What qualifications should a health professional have to be able to support appropriate psychological care? Particularly in oncology, where there is probably more bad news than in other fields, it must be an enormous psychological burden for doctors and nurses too, right?
Our research shows that health professionals are usually not overburdened by the cases themselves, but rather by administration or an unsatisfactory company culture. In one hospital, they expressed it by saying that they like their job but are dissatisfied with it. By this is meant that the biggest stressor is the company culture, administration and workplace relations. Whether it's oncology or surgery doesn't usually address that. And to answer the question of what they should have, it's a very simple thing that we should all have: an openness to the fact that the other person is sitting across from me.
And isn't it the case that too much administration and an unsatisfactory company culture kills that empathy in people?
It's true, these people are stressed by the sheer number of responsibilities...
What do we do about it?
That's a question for the Minister of Health! (Laughs) I guess we all hope to at least simplify some of the processes from the computerisation of healthcare, but otherwise nobody seems to have come up with anything. Rather, it seems that with the complexity of medicine, the complexity of administration is increasing.
From the point of view of a cancer psychologist, what is the most challenging thing when a new patient with a cancer diagnosis comes to see you?
Some colleagues see this as a special event, but I see it as any other crisis for which there are universal psychological tools. After all, passing from life will be dealt with by all of us, regardless of the specific cause. In short, someone comes along who is desperate because he has heard terrible news, and you try to diagnose what resources he has, what he lacks, what can be supplied...
“It is easier to talk about working with human suffering than it is to work with truly suffering people.”
Or as it says on the pictures hanging in the hallway outside your office: not necessarily to overcome, but rather to embrace?
Not only research but also Eastern wisdom shows that acceptance is one of the highest ways of regulating emotions. For example, when we offer our app to people in the waiting room, there are those who don't want to talk to us at all. They don't want an app that reminds them that they were or are sick. Those people don't seem to be alive at the moment, and they tell themselves they'll start living when the illness is over. Except in a lot of cases it never ends, and even when it does, they start worrying about it coming back for a change. Acceptance will help you accept the simple fact: here I am, I don't know how much time I have - which you and I don't - and I'm going to take the time that comes and do what I can, what my health allows. So acceptance is a goal that we take different paths towards, but we don't always get there. Not all of us have the capacity to accept such terrible things as death, loss, illness or old age.
It's easy to say, but harder to realize or accept when one learns something terrible...
Yes, absolutely. And I'd be glad if you'd put what I'm about to say into the conversation, even if it means shooting myself in the foot. But it's a fact. Psychotherapy, about changing people's experience and working with people's suffering, is much better lectured and written about than it is actually done with suffering people. That's a lot more work and realistically months, sometimes years of work that may not be successful at all.
How accurate is the assumption that a diagnosis is often better tolerated by the patient than by their family members?
It is not a rule, but the assumption is correct. We observe this really often. And the only thing that can be done about it and that we encourage is for people in the family to communicate openly. Not to be afraid, not to hide it. Because often abandonment happens because the patient doesn't want to worry their loved ones and vice versa. But if people keep it to themselves, it swells up inside them and then they become desperate and scared.
Is there data on how many cancer patients require psychological care?
We did a survey at the Masaryk Cancer Institute and found that forty to fifty percent of people in palliative care - that is, in a state where the disease cannot be cured but can be stabilized - showed signs of above-average stress. But how many would actually need help, I don't know, we didn't find out...
How is such a high level of stress actually detected?
Most often by direct questioning or questionnaires, where you find out how people are doing with sleep, nervousness, forgetfulness, or if they suffer from bouts of unpleasant thoughts. Some psychological colleagues often want to do face-to-face work, psychotherapy, psychodiagnostics, crisis interventions... But within moments they have overwhelmed outpatient clinics. I would find it more conceptual if hospitals had a stable psychological support open to all. So, for example, twice a week there would be a group in the common room open for 90 minutes for anyone who wants to come. The psychologist would come in for a round, have a few words with people, and get an idea of who has what needs, and at the same time sort out who to give time to, and who might get a book, who might get an app. After all, that's why we did it.
With that, I think of the group sessions, pictures of which we know from American movies, but where it is often an initiative of various community centers. Doesn't something similar work here?
As far as I know, at Yellow Hill, and elsewhere, yes, but in general there is rather little interest in this kind of support. I myself ran such a closed group with a colleague for two years and we managed to invite only seven people to it, despite recommendations from doctors and other health professionals. A lot of people are shy to go, some are afraid that they would not be able to control their emotions... But this is also about "company culture", to take a visit to a psychologist as something natural. "So you're going to see a psychologist, so what?" It's not just the physical side that needs to be taken care of, but the mental side as well.
“When people feel well during treatment, they cope better.”
Doc. Světlák při přebírání ocenění Czech DIGI@MED Award 2022 za aplikaci MOÚ Mind Care
Your Mind Care app is designed to benefit both healthcare professionals, whose hands it can free up, and patients, whose relief it can bring with minimal contact with a doctor. What was the main impetus for you to embark on its development?
I came from personal experience where I was getting reactions like "Gee, you should have reminded me of that last night." or "Wait, I have to make a note of that." I began to think about how to get the basic principles of mental health promotion into people's homes. So I had the idea 20 years ago. (smiles) But back then, there weren't the options that we have today, so my colleagues and I would write notes on cards for people, or we would address it with books and pamphlets. With eHealth you can be in touch with a person through a smartphone whenever they need you. You can upload a podcast, a video, submit a text to read, or remind them of something.
Currently, to use the app, I have to be a patient at Masaryk Cancer Institute, and before that I have to fill out a questionnaire that assigns me to one of the programs that I go through step by step. Do I understand this correctly?
Yes. There are three programmes - or arms as we call them - in total, plus one control group. In this one, we're still collecting data and verifying for whom and at what stage of the disease the app works best, because not all principles are universal. Once we have this study behind us, the app will be available for patients at other institutes.
How do the different arms differ?
The first is classic autogenic training, a basic method of relaxation. One learns not so much new attitudes and thoughts, but how to calm oneself, because when the body calms down, the mind calms down. The second method is based on the concept of positive psychology, which teaches people the basic idea that even though the world is troubled and there are many bad things in it, the good things prevail. And that we often suffer because we have a negative optics. But it's not about putting on rose-colored glasses. It's more about allowing people to see the whole spectrum. That is, to see the good that remains even in suffering. The third arm is called mindfulness, and in collaboration with Trish Bartley from Oxford University, we have developed it into an eight-week programme for cancer patients who, through meditation exercises, change their attitude not only to reality but also to how they perceive themselves.
That's what it sounds like to me, programs that I can take whether I'm a patient or not...?
Yes, that word "illness" only appears maybe three times in the entire app. And our goal is to ultimately make it a program for anyone. And maybe, when we have enough data, it will turn out that we can use the three arms to create one unique program that will be even better at relieving people's suffering.
You've already made the connection, but how important is psychological well-being, the will and determination to overcome the disease for cancer patients - and indeed for patients in general? In other words, how important a role does the soul play in healing the body?
Crucial! A whole body of research shows that the state of the psyche has an impact on the immune and stress response. Some studies even show that people who are mentally well have a lower risk of the disease returning. Although it's hard to say how strong the relationship is. But the main idea is that people should be well already during treatment, because then they will manage it better. When I'm mentally well, I observe myself less, attach less importance to sub-symptoms, and as a result, maybe I sleep better, which in turn has an impact on a better immune system response.
Have you noticed in practice that people with different types of cancer react differently to their diagnosis?
It's probably impossible to say, but it turns out, for example, that women with secondary and higher education, around middle age, respond best to psychological methods in oncology. On the other hand, the least responsive are...
Exactly! Mature men, often with prostate or gastrointestinal disease. For them, psychological support seems to be beyond the options they see. There are probably more reasons, but it's a shame, because they are clearly suffering too. I think it's probably also cultural, the idea that men don't cry, that they're tough... At the same time, there is still a kind of institution of the pub where men prefer to talk among themselves, although from what I observe, I feel that most such pub talk is superficial and vague. Jokes, jokes, stories, but mostly monologues... They don't ask each other how they are, how they feel. Maybe the guys have different valves, different strategies, but even if they keep it in, they don't hide that they're not feeling well... Anyway, it's not resignation on my part. The question is how to reach them, what channels to use to reach our male soul.
By the way, the progression through the different parts of the programs in the app is linear, not interactive, right?
Yes. If we were to be interactive, we would have to create dozens of scenarios, which would be extremely challenging. The question is how this area will be transformed by artificial intelligence, which in the future will probably be able to infer such scenarios and maybe even animate the characters that will be featured in the app. That's a bit of a dark future... In one research, they have already tested such a psychological conversation between a human and an AI, and the conversation was good and relieving, until the person learned that he was not communicating with a human but with a machine.
I sense that you are a little sceptical about the much talked about use of AI in healthcare...
AI can be a huge help in diagnostics and analysis, but in my opinion it can never replace human contact.
To take an analogy from the world of art, AI can already compose music, for example, and even the problem of generating vocals is slowly falling away, but I still feel that a person for whom music is not just a backdrop can distinguish whether it was created by a computer or by real musicians...
Mainly, we need the story behind it. When you listen to a song, you usually want to know what kind of people are making it. When Ewa Farna sings that she got her mother's hips like a wardrobe, you see a woman you believe. If we consider just our evolution as social mammals, our first entry into life is contact with a caring person. The touch, through which we form a bond that we carry on into our lives and form relationships based on it. That's why I don't think it can ever work that an artificial intelligence machine would create a living person for us...
Which brings me to the fact that even Mind Care is really just an app, something I have on my phone. While its purpose is to help, and progressing through the various programs can be a motivation in itself, some may find its use and constant connection to already ubiquitous technology annoying...
But we put a lot of thought into user freedom, so they can choose whether or not to receive notifications. We don't attack them in any way, and I think it's important that there are videos in the app where they can see us directly, the live people who created the app. The app is structured in such a way that a person can pull out of it, at a knowledge and skill practice level, what they would probably get in, say, a year of psychotherapy. The advantage of psychotherapy, of course, is that the psychotherapist can time the steps according to the person's needs and moods.
Apart from the aforementioned intention to open Mind Care to a wider audience, what do you plan to do next with the app?
The number one plan is to deliver scientific evidence that the eHealth app is essential for a certain percentage of cancer patients and that it is one of the pillars of mental health care. We would then like to develop an improved program for cancer patients based on the data, and thirdly we would like to get to a position where we have some reputation behind us in eHealth and we can attract investors and start making more sophisticated apps to take it even further. For example, an app for teachers is something that primary schools are waiting for. If only the apps could talk to each other so teachers and kids could go down the same path, that would be great. We have some pretty bold plans! (laughs)