What is the difference between a grief and loss counselor and a spiritual counselor? As a family with a child who needs pediatric palliative care, how can you get support from them? And do you have to be religious to be assisted by a chaplain?

The Knowledge Center for Palliative Care for Children went to investigate and asked mourning specialist Leoniek van de Maarel and chaplain Hans Evers. To find answers to these questions, we first zoom in on what both functions actually entail.

Grief and loss counselor

Leoniek is a grief specialist at Emotions Enzo and a member of the Holland Rijnland Integral Child Care Network ( NIK ): 'The core as far as I am concerned is to help mourners look at, investigate and feel the loss in such a way that they can cope with it. integrate into their lives. I do this by having several conversations with someone, asking in-depth questions and using a guideline. We also call this guideline the grief theories. I experience that these theories give mourners peace because you can explain well what they are going through.

I do not accompany the child who needs pediatric palliative care, but the family members around him/her. Parents, siblings. I help a family to say goodbye properly, to discuss matters and I help them to start a conversation with each other. Death and mourning must be able to be there in all openness. I'm working on that with them.'

Mental caretaker

Hans Evers is a chaplain at the Leiden University Medical Center (LUMC) - where he worked in Pediatric Intensive Care for 15 years - and he is also a member of the NIK Holland Rijnland. Hans says: 'I assist people when life is anything but self-evident. I stand next to a patient or a mourner to see who he or she is, where we are and which way is possible. I help someone turn on 'the flywheel of inner reflection' in order to find themselves again. Who are you? What are your own intrinsic considerations?

Imagine a huge statue. To comprehend the image you have to walk around it and look at it from all sides. In the morning and afternoon. When it rains and when the sun shines. All these different images create a coherence of the image. This way you can also look at yourself and at all the positions you take in your life. For example, that of mother / father / son / daughter, partner, employee and as a child of your parents. You experience what you feel about this. From all these sensations you get an inkling of the meaning and coherence of yourself. That walk. That's my thing. I'm going on that walk looking for you.'

What drives you in your work?

Leoniek: 'I want children to be able to be children. That is so enormously thwarted by illness or death. However, a child's life need not be disrupted by it. That's my motivation. For example, a 16-year-old young lady recently came into therapy. Her sister passed away. On her birthday she had received a present and her parents had given a speech. That speech was all about how well she was doing despite her sister being dead. The relationship was continuously established with her sister. Parents don't do that consciously, of course, but I draw their attention to it and make it negotiable. I invest in the rest of the family's life.'

Hans: 'I have counseled many parents of children with a congenital heart defect. These are parents who have already had bad news with the 20-week ultrasound and who know that if their child comes, he/she will have to undergo a series of operations. These parents have to choose again and again. What fits? What do I think and what do we think is useful to do? To go through those inner considerations very carefully with them and then make a choice can be comforting. Because of that care you can never blame yourself for jumping into the deep end and only doing something. I have heard back from parents that they have been able to draw lasting comfort from that.'

In your opinion, what is the difference between grief and loss counseling and spiritual care?

Hans: 'Grief and loss counseling is therapeutic action. That is, based on a request for help, working with a therapist who will try to clarify your question. This may also result in assignments or actions. A chaplain will not agree on steps. I ask: what is going through your mind? What are you doing?

If a parent has also lost himself/herself in addition to the loss of his/her child, my experience is that therapy often does not have to be used yet. Usually it is enough to stand next to someone in that loss. I help someone crank up that 'flywheel of inner considerations' and find themselves again. becoming self. That is often already a gift. Nowadays we tend to quickly psychologize something. A therapist is soon deployed for all kinds of problems. Mourning must be over soon. That's not how life works. However, if that flywheel does not turn again with a simple push from my side as a chaplain, then it is wise to look deeper into why it is stagnating. That is better in a therapeutic situation. However, I will never step into the role of a therapist myself. That doesn't fit.

However, spiritual care can be a supplement to therapeutic action. For example, I supervised someone who could no longer do the work he was doing due to an accident. After a rehabilitation process, he came to an occupational therapist. He stated: you know what your disability is and now we will get to work to help you find a job.

But this man had not only lost his legs, but also himself and who he was in this new body. I was then called in to guide this man to come to himself first. Once we had achieved that, we went back to the employment expert to look for a suitable job. I am in the conceptual phase and I guarantee the duration. Because when I work with therapists, I continue to support the person who needs help in his / her process. As long as necessary.'

Leoniek: 'In the conversations I have I follow a guideline, those grief theories, or I use a certain method to help someone further. What I do as a grief specialist is to keep an eye on whether someone goes through all the stages of grief. Is someone only concerned with the past and is someone unable to also take the step towards the present/future? Or is someone purely focused on the future and does he/she avoid the loss of what is now? I keep an eye on whether that 'back and forth movement' is there, because that movement is the most important.

I think the difference with a chaplain is that he focuses more on meaning and looks at what comes up in conversations. I have a different approach in that regard. In addition, as a therapist I have many methodologies that I can use. I always know how to find a way how someone with grief and / or loss can get started. If someone is unable to talk about it, then we work with the feeling, for example through art therapy. But I also use EMDR, hypnotherapy, play therapy and cognitive behavioral therapy, for example.'

What are the similarities?

Leoniek: 'I think what we all do is empathize with someone. Be really present. I even think that a chaplain might be even more so. Because he/she is not hindered by guidelines or methodologies. I also think that both a chaplain and a grief therapist do not talk about themselves, we really offer a listening ear. We are 100% there for the other person.'

Hans: 'There is an enormous synergy between the role of chaplain and that of grief and loss counsellor. We all encounter limitations in our lives that we cannot overcome without the support of others. We all need wise, kind people in our lives. People with patience.'

Since June of this year, the Ministry of Health has been giving an extra boost to the use of spiritual care in palliative care. Families with a child who needs child palliative care can also make use of this scheme. This concerns a contribution to the use of spiritual care and grief and loss counseling in the home situation. Read more about it in this article.

Do you notice that – because of the impulse to spiritual care and grief and loss counseling – families find it easier to find you for help and support? And can you also appeal to spiritual care if you are not religious?

Leonie: 'Yes. We have been asked three times since June if we had room. And now we have really received an active registration from the NIK, so we are going to work with that. I'm so glad that impulse exists. Therapy should simply be available, and it should not depend on money or budget. I am very happy with this initiative!'

Hans: 'I sometimes hear that people turn down spiritual care or think they have no chance because they are not religious. But you don't have to be religious at all to get in touch with a chaplain! The chaplain is often seen as the outpost of the church. A kind of ambassador. But that is an old image and no longer of this time. I work very differently, not from science or from the church. I go along on the journey of discovery based on my own perception and experience. What lives in you?

"As a pulmonologist fits your lungs and everything that has to do with it, so a chaplain fits the continuous inner dialogue that is in you. You talk to yourself."

Due to the new impulse, we have already had dozens of consultations. Within the hospital there are therefore many parents and children to whom you can make an offer for help, but we also sometimes refer to an extramural person if a child is discharged. I think it's fantastic that this facility, this impulse, has been created. People often do not know the difference between grief and loss counseling and spiritual care. Hopefully this impulse will contribute to this and will also ensure that more families have access to this help. As far as I'm concerned, it highlights the importance of inner dialogue. Nowadays a lot is about 'the outside', but everything that happens in your life has to do with whether you can be yourself. Your becoming. And that is more than important to me. So yes, this new impulse makes me very happy!'

Need support?

Do you need support from a spiritual caregiver or grief and loss counselor? Please contact the Network Coordinator of the NIK in your region. This can help you further.