Juris Zuitiņš (Latvia) Confession of a psychologist of children’s palliative care

This work is the search of existential and psychological supports in working on a daily basis with incurable children, their families, in working with children’s death and the mourning of their relatives. My searches and contemplations are based on the experience of working in children’s palliative care. I have been working for over four years, and, at the moment, I continue to work actively in this sphere. Our team includes doctors, nurses, a chaplain, a social worker and me as a psychologist and psychiatrist.

To achieve more profound understanding and to gain support, I used the book In the Face of Death (Papadatou, 2009). Its author, Danai Papadatou, is a doctor of clinical psychology with considerable work experience in palliative care. The book singles out the main, most common patterns of the team in overcoming situations with death, and calls them dysfunctional patterns of the team in the circumstances of death. I think that they can be called overcoming or coping with these situations. Familiarising myself with this concept considerably helped me to understand what happens in the team.

A bad forecast or the diagnosis of a grave disease is a shock for the parents. It constitutes a large part of palliative care – helping the parents, so far as it is possible, to live with these hard circumstances. These are serious emotions also for me as a psychotherapist. But, working in children’s palliative care, I saw that the death of a child is not the most awful experience. It is far harder to acknowledge for oneself that one wishes death to one’s child because one cannot watch the child’s prolonged sufferings.

‘The toll for the privilege of being human is suffering’ (Lasmane,1995, here and further on translation by the author). While working in palliative care, one has to see, encounter and empathise with numerous sufferings. Because the hardest sufferings are meaningless ones, I have spent time and energy looking for the meaning of human suffering. Although I cannot announce an unambiguous result of my search, I can agree to the idea that the search itself eases the sufferings.

The hardest for me was a support group for mothers who have lost their child. It is very hard to make contact with the sufferings of these women, and it was hard to be with them at the time of such heavy suffering. But I was very much inspired by the women’s search for the meaning of their sufferings, the search for the sense of their children’s life! It was very courageous.

It is always harder for me to see the sufferings of children. I cannot see the meaning of it, and it makes the experience even harder. Sufferings purify! But these children have not yet been soiled, sometimes even in the literal sense. There is no point in looking for the meaning of children’s sufferings. We should not allow these sufferings.

The reactions of the relatives at the child’s death are hard to take in for doctors. At this time, all eyes are directed to the psychologist, the psychotherapist or the chaplain. This attention is turned to them usually even before the child dies, when it is necessary to prepare the mother for the child’s death. The request is not bad as such, but the expectations are often absurdly unrealistic. It is the frontline where the hardest battles go on between the psychologist, the psychiatrist and the doctor, at least judging from my experience.

The first reaction to a child’s death is the shock of strong and contradictory feelings and emotions. The mother often feels denial as a means of protection against the feelings of pain and guilt. Guilt for the relief and the end of suffering from caring for a very sick child. The sense of losing and gaining, for which one feels shame. Aggression as a result of helplessness, even if she had to live with helplessness for several years.

In most cases, the mothers think that they must not cry in the child’s presence, neither can they talk about death. The same is recommended by doctors. However, my observations at the department of oncology make me doubt this advice.

Do people mourn in a more complicated way? Or do more complicated theories help to understand the events? Or do theories replace real feelings?

The mother asks for help most often. In all the cases where I participated or in facing a mother’s grief, her first reaction after the child’s death is shock. At these times, you can expect any reaction from the person, from rage to serenity.

It is very hard for me to be present when such strong feelings are expressed. But it is also hard, and sometimes it is even harder, to witness closely humility, acceptance of the bitter fate and being left with naked, deep, merciless pain and its experience. When a mother shares the pain, there is a feeling that everything inside oneself is contracting, as if a cold hand is strangling the heart, and the belly is turned inside out, leading to real pain.

In meeting a family’s mourning, it happens very rarely that I work with the fathers, yet I find working with children very interesting, lively and full of feelings. They are the brothers and sisters of the dead children. I have organised groups for mourning children, and I also work separately in children consultancy.

There is also an analytic approach to the issue – exitus letalis. ‘I am sure that the idea of separation is, as a rule, characteristic for neuroses and psychosis and indirectly presuppose punishment, possibly for desiring an incest. The fear of separation from the mother (as a source of life or the object of incest) motivates the desire to return to the mother’s womb; but the regression does not mean only the loss of individuality, it is also the suppression by the destructive mother, who annihilates on purpose or to punish’ (Rheingold, 2004).

And the last, less frequent but equally enticing means of escaping the feelings is the escape based on acquiring some truth or even creating one’s teaching. The book by Thomas Bryson and Ursula Franke-Bryson (Bryson, 2013) represents such an escape; in it, the authors, using their experience of being in the hospice and palliative care, promote the need of practicing setting the priorities right.

So, how can one find the energy to go on without escaping along one of the above-mentioned paths? Possibly, by being oneself! By being open to one’s feelings and emotions. By being open to one’s feelings often means lingering at the limit of one’s ability, accepting one’s powerlessness. It means standing on the edge of the abyss with one’s life values, first of all, without fleeing. It always means doubts and indecision.

There are possible points of support. For me, they are my understanding of man and his life, based on existential psychology and philosophy, my understanding of existence, co-existence suffering and compassion. It helps me to talk about my feelings to our team. I am not afraid of showing tears in my eyes, but neither I am to argue with the doctors or to be angry with them. On the whole, having worked in palliative care, I became more emotional and began to show my feelings more, which made me calmer.

Also, my children make me happier. My family is a huge support. Another excellent remedy is provided by such a simple entertainment as a good concert. I would say that all my life greatly supports me in my work.

But my main source of support are my thoughts and relations with my own death. I find that someone has already expressed my thoughts long ago, and some of them have even been written down. That is why I do not think that my thoughts about death are my own, but they seem to me acceptable at this point in time. I think that my death will never happen for me. While I am, there is life. When death comes, I exist no longer. My death will exist only for others, and the same is true about other people’s death for me.

It is very important to look for satisfaction in working with incurable children and their families. People trust us, too. They trust when they let us come so closely to their deepest feelings, to their innermost, to the life and death of their child. How do we use this trust? Are we anxious, if only a little, when we deal with something valuable and fragile?

That is what I have thought of: ‘If there had been no anxiety, I would have had no possibility, and vice versa.’ Attempts at staying very confident only reveal inability or lack of motivation to control anxiety. By getting lost in illusions about getting rid of anxiety, we lose the possibility. We lose the possibility of being, experiencing, accepting and helping. The calmness is an apparent one. If I avoid something, anxiety and lack of confidence remain – it is very different to feel emotions and pain rather than to be over-confident.

Very often, the people I know think that I work with death. No! I do not work with death. I work with life.