Interview: Palliative medicine is about life, but it also introduces medical students to dying

When I look at the data on palliative care, for example, the ratio of patients to workplaces providing palliative care, I feel that it is a relatively young topic in the Czech Republic. But how big is it?
The need for palliative care is great, and it is true that we have a lot of catching up to do when we compare ourselves with other countries. There is a need for palliative care in many areas, whether it is hospital care, outreach care or palliative care in specialised facilities such as hospices. In some services, the needs are met more, in others less, and the situation also varies by region. A major challenge is to teach palliative care at faculties. Many people have the idea that palliative care equals dying. It is, on the contrary, about life. It's about living with illness, but living well. Nor is it true that palliative care is only for cancer patients. While up to eighty per cent of adult patients in specialist palliative care facilities are cancer patients, epidemiological data suggest that cancer patients account for only forty per cent of the set of palliative diagnoses, i.e. those in which palliative care is needed at advanced and end stages.

Can you specify in which services palliative care is better fulfilled, and vice versa?
For example, in our region we have two stone hospices - in Rajhrad and in Brno - which is sufficient. But for example, there are not enough field providers or home hospices, which is a kind of "hospital inside out", where the staff goes to the patient's home...

Recently, the average life expectancy has been increasing, but the number of years lived in good health has not changed significantly. In this context, how is the palliative care delivery system responding to medical advances?
Indeed, today we can observe the chronification of diseases, and data show that by 2030 we will have twice as many patients over the age of 80 as today, so the need for palliative care for geriatric patients will continue to grow. And every patient with a so-called palliative relevant diagnosis should have a care plan made to determine how they should spend the end of their life. We as healthcare professionals can offer something, but the patient must first say what they would like, what their preferences and values are. Together, we then try to put together a care plan to make the patient's end of life as good as possible.

Your colleague, Dr Ladislav Kabelka, in his presentation Priorities of palliative care in Brno and the South Moravian Region 2025, mentions the term "Effective combination of the art of the possible and the useful"...
...what I'm saying here professionally, Laďa said in a very poetic way. (smiles)

How can this effective combination be found?
Only by having a professionals who knows what they can offer talk to the patient and their family. We also talk about the adequacy of care and treatment, and it is our job to find this adequacy in dialogue with the patient. There used to be a paternalistic attitude on the part of doctors, where we pretended to know best what was good for the patient and offered it to him, whether he agreed to it or not. Nowadays, the patient is much more a part of the decision-making and the creation of the care plan.

When you mention then and now, how is the palliative approach perceived by the older generation of doctors?
It's not natural or easy for them. I also grew up in so-called victorious medicine, when we were determined to win at all costs and death was seen as a kind of failure. But it's great to see that doctors are now beginning to distinguish not only whether or not a patient will survive, but they are also concerned with the quality of life they will survive with. They're addressing how he's going to be doing in a year, whether he's returned to work, for example, what it means economically for society, what his symptoms are, not just physically but psychologically... In a way, the patient is getting back to the centre of our care, and I'm terribly glad to be part of the process. Because in the broader context of palliative care, it represents a humanistic approach where we see the patient not just as a case and a number, but holistically as a person with his own story. And it's important to teach this systematically to medical students at school.

You have already mentioned that a high percentage of patients in palliative care are cancer patients. However, a dramatic increase is expected in the next few years, particularly in patients with neurodegenerative diseases. How is the profile of palliative patients changing?And is the palliative approach succeeding better in some areas than in others?
In oncology, in geriatrics, in intensive care medicine or in internal medicine, it is asserting itself quite naturally. In other fields, such as surgery, it is not so easy. Surgeons are encouraged to be confident and decisive, and there is more of a winning mentality to win those battles... But I don't judge it by that, I understand it completely. We just have to work with that in implementing palliative care.

What is the interest of students in palliative care?
Overwhelming! The students are soaking up the topics like a sponge. They're interested in issues of communication, ethics, being and dying. These are topics that one has within oneself, but at the same time fears. How do you communicate a serious message? How do you tell someone that something is ending, that their life is limited? It's not just students, these topics are difficult for young doctors... And actually not only young doctors... Palliative is a guide that shows that, for example, communicating a serious message is not a skill one is born with, but it can be learned. That talking about death is perfectly normal and that patients and relatives are actually waiting for it...

Today's young generation is said to have trouble communicating and establishing real relationships, and there is talk of alienation caused by how much we are turning to the digital world. What challenges does this pose in teaching a subject that is about communication and empathy?
It brings big challenges just in teamwork, which has to have some dynamics. As you say, young people are taught to communicate through electronics, and suddenly they have to work face to face, where they have to open up a little bit and create a safe environment, learn to work with emotions...

You are also working at the Department of Simulation Medicine at the Faculty of Medicine of the Masaryk University. In simulated scenarios, the death of a patient is not part of them at all, so that it does not negatively affect the student. So what is the right way of opening the topic of death, which naturally belongs to palliative care, in teaching?
In simulation, we really don't want the patient to die. On the other hand, the fact that a patient dies is a message that medics should get. Because some of their patients actually do die in real life. It sounds terribly trite, but if we teach them that we always win, then they will be surprised by death and see it as a failure. Because at the moment, because of the way teaching is structured, a medic does not have to experience a patient dying at all. But I think it's really important that they experience it, that they see what dying looks like.

Some physicians working with terminally ill and dying patients testify to the importance of distancing themselves so that one is not emotionally overwhelmed by such close contact with death. On the other hand, palliative care cannot do without empathy. How does it fit together?
That's a good question. I see empathy in palliative care as a key ability to imagine what the patient may be experiencing - physically and psychologically - but also to recognize that I am not experiencing it myself. We encounter some really difficult things in practice, and if we relate too much to ourselves, it would quickly get us down. There has to be a line that can be well drawn by seeing ourselves as guides who can make the patient's end of life as good as they want it to be. And at the same time we realise that we are not responsible for patient´s situation. Remorse or negative feelings do not help us in this work. On the contrary, what we can bring to the situation is an emotion of calm, acceptance, and sometimes humor when there is room for it. Even in the most difficult moments, we can find something human that helps.

Can this approach be learned universally ? Could such a setting be unattainable for someone by their nature to the point that they simply cannot handle working with the dying?
It is just that, for us, perhaps a good outcome is that the patient may die, but dies at home, in a home hospice, among loved ones. In a way, we rejoice if we can make the end of the patient's life as he or she wishes. I think it is also good for us as professionals to establish what brings us hope and a source of joy in a context that is, at first sight, sad for others, and that is the feeling of a job well done and job satisfaction.

To what extent is the topic of perception of death influenced by culture? In some cultures, death is seen as part of the life cycle and after death, the life lived by the deceased is celebrated. In our country, the prevailing theme is grief over loss and mourning...
The important thing is to see life as a gift that is not granted and which ends with death - and it is natural. Religious ceremonies in particular, with their metaphorical language in the form of so-called rites of passage, can help with many things - giving support and strength for the coming change in our lives. I now have a fresh experience with a colleague, a professor, who had not heard from me for some time, and only after some time wrote to say that his mother had died, being 96 years old. I expressed my condolences to him, although of course it is a respectable age, and he wrote back saying that they had conceived of it as a celebration of her life, exactly as you say, a celebration of life. But in a way, that's what happens here too, where after the ceremony, in which negative emotions predominate, comes the kar (a commemorative act), which is also a celebration of life...

How prepared are we as a society in the Czech Republic for home hospice care? Again, I think of comparisons with countries and cultures where it is natural for elderly and sick family members to be cared for by their loved ones at home. In our country, I feel that the prevailing tendency is to place people in an institution where they are cared for by others...
It's called the institutionalization of death. Since the last regime, more than fifty percent of patients die in an institution. Although recently we've seen a trend towards more people dying at home, which is really positive. It is the development of palliative care or outreach services that makes this possible. However, it must be said that not every patient wishes - or can - die at home. The typical situation is that the patient wishes to die at home, but needs a caring person to do so, which they do not have.

Generally speaking, what about our fear of death?
The fear of death is in us naturally. But I think as a society we collectively come to terms with it and stop being afraid of death. I also work in home hospice and many families initially fear that they can't handle the situation and home care. People aren't sure if they're ready for when the end comes. That's a given socially. But the vast majority of families eventually make it through, including dying. In the end, there is some satisfaction for them when they realise that they did the best they could for their loved one and that they stayed with them until the end.

What are the most important ethical issues in palliative medicine? For example, how does it view assisted dying?
We deal with what treatment to give, what patient to indicate, what condition to prolong, what not to prolong... I encounter that let's say one in five patients tell me that they would like to die, to be put to sleep, that they would like euthanasia. Often there's a cry for something behind it. It may not only be a manifestation of physical distress, but also of existential distress, where patients realise that in time they will no longer be here. We're here to help them with processing, with acceptance. And in terms of physician-assisted suicide, palliative care sees it as a service, but one that goes beyond palliative care in a way.

What do you mean?
It's something we can all take an ethical stance on. From my personal point of view, but also from a religious point of view, euthanasia is appropriate in some cases. It's not against my beliefs. On the other hand, to introduce it in the Czech Republic at this time, when palliative care has so many challenges and unmet needs, would not seem to me to be appropriate. Let us first of all concentrate on palliative care, let us draw up a strategic plan to improve it, and then let´s talk about euthanasia.

So what are the biggest challenges of palliative care in the Czech Republic today?
The biggest challenge is to transform palliative care into medicine that is not about dying, but about living well. We would like to reframe this established narrative and thinking and have other doctors embrace palliative care. To show that the palliative care physician is not a specialist in dying but rather a facilitator and mediator, to show that palliative care is not just one thing, that it takes many forms... And last but not least, to increase the number of palliative care professionals and the number of services. Because as we said at the beginning, the need for palliative care is high. And to meet these challenges, we need to show students that palliative care is a cool field!

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