“Every family and every farewell is different.”
Interview with Kathrin Hauri, MD, and Michèle Widler
Kathrin Hauri, MD, is a senior physician and Michèle Widler a psychologist on the Paediatric Palliative Care Team at the University Children’s Hospital Basel (UKBB). The UKBB is one of currently four certified centres of excellence for paediatric palliative care in Switzerland, where, together with their families, children and adolescents with life-shortening or life-threatening illnesses receive comprehensive and holistic care.
Ms Hauri, how does palliative care for children and adolescents with cancer differ from that for adults?
Palliative care in adulthood most often concerns older people. In contrast, children with cancer are at the very beginning of their lives, and adolescents are already on the way to defining their own path in life. They are surrounded by family and friends, may already be attending school or undergoing training. They are full of energy and have plans and aspirations for the future. Everything is geared towards life and development. When a child is terminally ill, this complex system is completely thrown off balance. In paediatric palliative care, we provide holistic support for these children and their families – medically, psychosocially and ethically. The focus is always on improving quality of life when there is no longer any chance of recovery.
Ms Hauri, what do parents need most urgently when it becomes clear that the therapy isn’t working for their child?
Open and honest discussions are particularly important during this phase. And a clear position is needed on the question of what is good for the child right now and what might not be. If it makes more sense to dispense with further stressful therapies, we focus on alleviating the symptoms. We support families in deciding together where the line should be drawn for them. This involves questions such as: “What is still justifiable, and what does quality of life actually mean for the child?” The answers to these questions vary considerably. We, the Palliative Care Team, are there to support parents through this decision-making process. Quality of life is our top priority.
Ms Widler, as a psychologist, how can you support affected parents?
Parents are torn between the knowledge that the end of life is approaching and the hope that stays with them until the very end. As a psychologist, it’s important to give this area of tension space and simply be there to talk. Parents constantly ask themselves: “How can I be a good mother or father to my child?” The answer to this question varies greatly from one person to the next; there is no right or wrong answer. We at the Palliative Care Team try to work with the family to find the path that is right for them. We want to empower parents so they can look back and say: “We did everything that was important for our child – and that was the right thing to do.” This means we have to be as open and transparent as possible with parents about the approaching end of life and also ensure that the child’s wishes are taken into account.
Ms Hauri, how do the children or adolescents affected deal with the subject of death?
They often sense very clearly what is happening to them. Some address the topic directly, others open up in different ways. It’s important that we as adults recognise these signals and give space to their feelings and needs. There is often a lot of life left between the realisation of their own mortality and death. Many children ask themselves: “What else do I want to do? What is important to me right now?” At this stage, they are often surprisingly mature and clear-headed. Children in particular struggle far less with their fate than adults, perhaps because they are more anchored in the here and now. The Palliative Care Team listens carefully, tries to fulfil wishes and helps parents to remain capable of acting in this extreme situation. This also includes explaining the dying process to them. Knowing what medical treatment their child will receive enables parents to make the right decisions for them. For example, if their child wants to die at home. We closely accompany this process and can be present around the clock if required.
Ms Widler, how can parents manage to let go in this dreadful situation?
It’s not really about letting go. The idea of losing something deeply loved triggers fear and despair. Instead, we try to convey to parents and siblings that the deceased child will have a new place in the family. The child should be allowed to remain present beyond death. Rituals and places of remembrance, which vary from one family to the next, can help with this. However, this process also requires a network of helpers who are available and provide support – both emotionally and organisationally. At first, many parents continue to function normally. It’s often the weeks and months that follow, when there is more room for grief, that prove difficult. It’s our task to find out if they or the siblings need anything, perhaps visit them and stay in touch. But here too: every family and every farewell is different. Grief doesn’t follow a linear path. It doesn’t simply vanish, but changes over time.
Ms Widler, siblings are also under a lot of emotional strain during this time. What do they need to be able to cope with the death of their sister or brother?
Above all else, siblings need normality. This means that they should go to school, continue their hobbies and be with people they know. The daily routine provides security and gives them the feeling that they are not being forgotten – both during and after the illness. Children do not grieve in the same way as adults. They tend to grieve at specific moments and can laugh and be cheerful in between. This is precisely where the immediate environment can provide concrete support by giving the affected siblings time and attention while at the same time taking the pressure off the parents. It’s important to let siblings decide for themselves how much they want to be involved in the dying process. Some might want to say goodbye actively – with a letter, a drawing or a final visit. Grieving siblings need their own space and individual support.
Ms Hauri, how can those around them best support the grieving family?
It’s often seemingly small gestures that are valuable, such as cooking a meal, looking after a sibling or paying a visit. It’s important to show that you are there, not only in the first weeks and months after the funeral, but also later on. Grief doesn’t simply disappear with the passage of time. Anniversaries, birthdays and Christmas are often particularly difficult for families, even years after the death of their child. Many parents fear that their child will be forgotten and feel that nobody cares about them anymore. That is why it’s so important to ask how things are from time to time and indicate your willingness to talk – even though this isn’t always easy.
Ms Widler, is death, especially the death of a child, still a taboo subject in our society?
Definitely. If death were no longer a taboo subject, we as a society would be able to deal with it better. In my experience, grieving parents want to talk about their child when the time is right for them. By talking about it, a space opens up where grief and the child have their own place. It’s often the case that friends and acquaintances do not know how to talk to parents about the loss of their child. One way of going about it could be to say: “I really don’t know what to say. I am at a loss for words.” That is far better than remaining silent or downplaying death. If we do not learn to deal with this topic more openly in our society, these inhibitions will remain. We need more courage and determination to address this issue.