Our palliative care system operates as a network. This network involves the continuous integration of palliative care providers into the healthcare system and fosters collaboration between hospitals and hospices. It aims to unite those who support patients and help them manage their work more effectively—whether in hospitals, hospices, or at home.

In 2015, we had 98 palliative care units in hospices and hospitals. By 2020, the number had increased to 106 units, primarily due to the establishment of paediatric palliative care departments.

Today, we will talk about psychological pain from the perspective of Cicely Saunders’ approach and her concept of total pain.

Cicely Saunders was a unique individual of her time. The understanding of pain as something treatable, as a separate medical speciality, only came to us in the 2010s. This marked a shift from viewing pain as merely a functional issue or a symptom of a problem to studying its source and meaning.

Cicely Saunders wrote in the mid-20th century that pain should be understood as a more complex concept. It is not just one component but an entire volume of experiences that must be comprehended holistically. Mental disorders can significantly influence both the intensity and significance of physical pain. Sometimes, physical pain is not a signal from the body at all but a sign of a psychological disorder.

It is crucial to understand what pain means to a dying patient and its significance, as the pain experienced by a dying patient is different from ordinary pain.

Ms. Saunders emphasised not just pain itself but also communication between the patient and healthcare representatives. She said it is important not only what we say to the patient but also what we do not say. Sometimes, silence can be more meaningful than words.

Cicely Saunders was one of the first to listen to the patient's so-called narrative. She focused not only on the characteristics of pain but also on the patient's life story. All aspects of a patient's life matter when dealing with pain.

One patient described her pain to Cicely Saunders as: "It feels like everything about me is wrong like everything is not okay." This woman’s pain was not just physical; it was also social and emotional, including family problems—this is total pain. Pain is something inseparable from both the body and the whole person.

David Clark noted the paradox of total pain. On the one hand, it is a physical sensation; on the other, it is a symptom of human suffering, essentially a manifestation. Physical pain becomes total, and total pain becomes physical.

In his work, David Clark explains that we must humanise physical suffering. Humanisation is a crucial word here. We need to see the patient as a person, not just as a carrier of a physical symptom.

A large part of our pain experience, what we consider a physical experience, depends on our mental response and is often not a physical issue but a manifestation of psychological pain.

Like Cicely Saunders, Viktor Emil Frankl argued that everyone needs to understand the significance of their life. Therefore, it is essential to be predominantly responsible when interacting with a dying patient who is losing the meaning of life.

Total pain is not just a concept; it is an approach to life, how we perceive the patient, and how we treat them. We talk to the patient and listen to them; even the conversation is healing. It is not what we, as medical professionals, say to patients that matters but what we allow them to tell us. By listening carefully, we can identify the roots of total pain. It is important to involve the patient's social circle because suffering extends not only to the dying but also to their relatives and even the medical staff around them. This is what the holistic approach teaches us.

So, total pain is an all-encompassing and gripping emotional experience inseparable from its components. Physical, emotional, social, and psychological pain forms a single whole. It is not always easy to distinguish these components, as the patient is indivisible. However, it is crucial to pay attention to all aspects.

There have been many discussions about suffering. Three authors, Cicely Saunders, Viktor Frankl, and Eric Cassell, have shaped the concept of suffering, each with their own vision. They discuss very similar ideas but in slightly different ways.

Cicely Saunders refers to suffering as total pain. She pays significant attention to the patient's narrative, highlighting aspects such as emotional, psychological, social, and physical suffering.

For Viktor Frankl, finding the meaning of life through suffering was important. He called this transcendence. For him, it was a process of searching for meaning in life and the personal growth associated with this search. He developed his own psychotherapeutic approach to working with patients based on finding meaning in even the most challenging life situations, up to life-threatening ones. Much of Viktor Frankl's philosophy is based on finding meaning through suffering.

Eric Cassell said that suffering is not something experienced solely by the body. It is not about physical pain but the expression of various patient issues, revealing their personality and interactions with those around them. Eric Cassell criticised Cartesian dualism, which draws a clear line between the spiritual and the physical. He argued that a person should be perceived as a whole.

Suffering can have different characteristics. We can describe it, for example, simply as 'yes' or 'no' —whether it is present or not. We can describe it through dynamics, as suffering is not static or through intensity. Naturally, suffering is individual. It is also characterised by loneliness, alienation from the world, helplessness, hopelessness, and loss of meaning. We see that all these are negative concepts.
When conceptualising terms like suffering or total pain, we can say that all research on these topics points to existential crisis, emotional turmoil, and the loss of meaning in life.

Psychological pain is suffering, a multidimensional concept known as total pain.

Ultimately, people express their suffering in line with how they have lived. Of course, physical pain has a component of internal pain. When we listen to patients and inspire them to share with us, we can better understand the nature of their pain.

Palliative care is paramount in treating psychological pain, as it is based on suffering. Palliative care professionals play a crucial role in assessing psychological pain. We have the opportunity to work with patients whose needs are unique.

It is necessary to listen to the patient, focusing not only on their medical history but also on their experiences. Naturally, it is important to consider the patient's specific characteristics and always approach treatment individually. No two experiences of suffering are alike.

Finally, it is essential to consider the wide circle of people close to the patient, as suffering also extends to them.

Guida Da Ponte:

A patient will tell you a lot. There are things that may seem insignificant at first glance, but these are the things to pay attention to, as they can help assess psychological pain. Never forget the concept of total pain, which includes emotional, social, and psychological pain. The social aspect can also be very useful. For instance, is there a problem in the patient's family? Is the patient suffering because they are dying and do not want to tell their loved ones, children, or spouse? Are they afraid of more severe suffering? Do they have financial difficulties? We know that, for example, cancer patients may face financial challenges because treatment can last for a long time, forcing many to stop working—a social problem. Do they understand what is happening? Have they lost the meaning of life and feel helpless? Are they unsure what to do next, where to find their place in the world, or what will happen to their family after they pass away? All these concerns can significantly distress the patient.

There are various scales that can help determine the level of mental stress, but I believe conversations with patients are far more important and valuable.

Guida Da Ponte:

Psychological and emotional pain are in the same field. An example of psychological and emotional pain could be the manifestation of depression, where a person stops enjoying life as they used to. This can be a symptom of specific mental processes in the person’s mind and a sign of corresponding emotions.

Spiritual pain is somewhat different. It relates to a person’s identity and beliefs.

In other words, they have become a different person. Here, it is essential to focus on this definition: 'I am not who I used to be.' One of the difficulties people face is defining themselves through their activities. I am a mother if I have the physical strength to work in the garden or care for my children. But if I am going through chemotherapy and constantly feel nauseated, I am no longer the mother I was; this is a different role. It feels like changing roles and becoming a different person. This is an example of a spiritual problem.

Spiritual pain can be divided into so-called existential issues: who you are, what kind of person you are, what you do, what you mean to the world, and a religious crisis. I understand that religiosity and spirituality are often seen as interchangeable, but they are not. You might even feel angry at God. Why did He do this to me? What did I do to deserve this? This is also a spiritual component of pain.

Guida Da Ponte:

Of course, there are children with different features, including neurological ones. However, they are still people, and according to the humane approach, you can identify the pain experienced by this specific patient, taking into account their characteristics and how they communicate with the world. Depending on the level of impairment, we can use more primitive methods, if I may use such an expression, including to identify suffering, as children with developmental or communicative disabilities may express it more primitively.

In the end, what do you need to do? You need to identify what kind of suffering this specific patient is experiencing. What specific suffering is the family experiencing? And you need to support them. I believe we can always help with any illness or suffering.

Sometimes, the problem is that we, as professionals and healthcare specialists, complicate things that are actually very simple. We tend to overthink.
If there is a terminal illness. You asked about children, but I will give an example with elderly patients. What do people want? Usually, they want very simple, basic things. This is what people define as pleasure. In this sense, giving them love and significance is often not as difficult as it may seem. This is relevant for children, especially those with mental characteristics. I believe they can also have elementary needs.

Comment from a Participant Narine Movsesyan:

With children who have developmental or speech impairments, it is very difficult to determine how much suffering is specifically related to pain. Suppose the child has stereotypical behaviour that fits into their usual life pattern. In that case, you know how this child usually behaves—any behaviour differing from this stereotype can signify distress.

From our practice, I can say that in cases where we cannot use specific scales for children, we can simply administer a test dose when there are behavioural deviations, according to the mother’s or caregiver’s words.
We do the same with adult patients. We just give a test dose of pain relief medication and observe. If the patient responds and calms down, we can indirectly understand that it is pain.

Guida Da Ponte:

Narine said something useful. A particular patient's different behaviours and patterns can tell us a lot. In psychiatry, we see different deviations in neurological behaviour and different neuro disorders, and the same applies to elderly patients with dementia.
I encounter various impairments in some adolescents, although I work more with adults as a psychiatrist. Do not forget what Cicely Saunders said. The most important thing is to understand the patient and their environment and the context in which they live.

Guida Da Ponte:

Elisabeth Kübler-Ross described the stages of grief, well known to palliative care professionals. Of course, they manifest differently depending on the illness and the limitations the patient experiences.

Usually, people in the final phase of life do not have a mental disorder if it was not present earlier. However, they do experience psychological pain. The closest to comfort for such patients is when they are prepared for what is called a good death.
I will try to explain briefly. A good death, simplified, means death without suffering. It does happen. There are different psychotherapeutic techniques to help patients approach a good death, such as psychosocial therapy, aimed at helping patients on the threshold of death find meaning in life.

Psychiatrists mainly deal with treating depression. But the most challenging part is existential and spiritual pain. We do not have medication for spiritual pain. There are psychotherapeutic interventions that have proven effective. But still, this is perhaps the most difficult aspect of helping a patient.

As for whether anyone hides their pain—I think at the final stages of life and illness, pain is so pervasive that it is extremely difficult to hide and easy to recognise. Most often, patients show their pain or talk about it. Existential pain cannot be hidden; it is visible. It can be identified in children and people with developmental disabilities.

You can use scales, of course, but if you do not talk to patients, observe them, or listen to their narratives (I will repeat the word: narrative is very important), if the patient does not tell you about their experiences and does not show them, it will be very difficult to identify this suffering. Talking to the patient and forming a connection is the most important thing.