'It Was An Act Of Love' - Letting A Dying Child Go
Annukka died of a brain tumor at the age of three. Her parents, who were by her side until the end, tell their story amidst a growing push to extend assisted death to children.
Hanna Sabass and Daniel Gerecke, both of whom have university degrees in geography, had been working for a decade in international development. And it was within the framework of a professional project that in 2009 the married couple intended to leave for the Fiji Islands with their daughters Annukka, 2, and Antonia, 8. But shortly before departure, Annukka got very sick, and four months later an aggressive brain tumor was diagnosed.
At two-and-a-half, our daughter Annukka was diagnosed with a particularly aggressive brain tumor. Before we even knew what was the matter with her, she’d lost her eyesight and ability to walk. After the diagnosis, there was a year filled with innumerable examinations, surgery, chemotherapy, and stem cell transfusions. After a brief but active and life-affirming period of convalescence our daughter died at the age of three-and-a-half.
Under present German law, well-advised parents can make a dying child’s process easier, and even make it somewhat shorter without resorting to active assistance. However this requires awareness, courage, devotion and mainly the ability to let go.
When it became clear that we had lost the fight against Annukka’s cancer, the first question to deal with was her remaining time. What possibilities were there, we asked, of prolonging her life? And what would the conditions of that be? The only possibility to prolong Annukka’s life by a few months was high-dosage radiation therapy which would have had to be administered over 30 consecutive days under complete anesthesia. This would be not only painful but would have had serious side-effects both psychological and physical. The decision was ours to take.
In the weeks preceding this news, both of us had privately been running scenarios through our heads and fearing that we would have to make just such a decision. We were also scared that we might not agree with each about what to do. We had already accompanied our daughter in many agonizing circumstances, always with the idea of perhaps saving her life. But now things were different. This was about dying, about time, and pain, and dignity. We decided against the radiation therapy.
It was a decision for a fast but dignified death. Other parents might have decided differently. They would have had their reasons and their right to make their own choice. We couldn’t ask Annukka what she wanted because by this time she was in no condition to give us an answer. But we feel certain she would have said: Mama, Papa, I don’t want to go back to the hospital.
Trained for survival
Then came the really hard part: the dying. How did that work? And where was the best place for it to happen? Everybody said it was best to let it take place at home. The hospital said we were welcome to come there, but we asked ourselves what was really the point.
The nursing staff and doctors are all focused on survival, the fight against cancer, healing. They are not focused on dying. The child oncologist, on whose every word we hung during therapy, was suddenly rendered helpless when we asked him to explain what we could expect now and how we could help our daughter. The pediatrician, an émigré, had no experience in this regard and no palliative training. He also didn’t know any other pediatrician in Bremen he could refer us to. We were clueless – and very frightened.
Help finally came from the Bremer Engeln (Bremen Angels) who got in touch with us after hearing at the children’s hospital about our case. This is an association that provides care for seriously ill children and their families. We already knew the two pediatric nurses from the child oncology department at the hospital – they were the only ones with any training in palliative care.
But the association couldn’t do home visits in emergency situations either, because alongside their hospital shifts the women were looking after kids in all of Bremen and its surrounding area. But at least somebody was able to finally explain to us the paths that death can take, and that most children should be at home when they die. The women organized pain and epilepsy medication, a special-care bed and brought us literature on accompanying somebody to their death.
Talking to them it became clear that if we wanted to accompany Annukka we had to listen to her, and this would require a major turnaround for us as well: because just as hospitals are there to keep life going and to heal, parents are there to nurture their kids to adulthood. Now we were being asked not to do that. If Annukka didn’t want to eat, she didn’t eat. If Annukka didn’t want to drink any more, then she didn’t drink. Her medication was aimed at lessening her pain.
Not at any price
Our task from then on in was to be aware. To observe our daughter carefully and fill her needs, not ours. It was very hard, but the fear of prolonging her pain by force feeding her was greater. We had to learn that we couldn’t call an emergency doctor because he or she would have been obliged to try and save Annukka’s life at any price, and to send her to the hospital even if that meant unnecessary stress for all of us, particularly Annukka. We were left to our own devices, and we suffered from being left on our own in this way.
Increasingly we entered a timeless space of uncertain waiting. Annukka was fading fast, but wasn’t suffering as far as we could make out. In fact she was happy when she was alert, although she was often mentally absent. Finally we moved to the Löwenherz child hospice in Syke where all of us were looked after according to our needs. Here there were doctors with palliative training who were able to tell us how to proceed. Two weeks later, Annukka died. No, it wasn’t peaceful, and no, it wasn’t without pain. But it happened in her own time. And we all, her sister, her mom and dad, were there. We were able to sing her a final lullaby.
For us it was an act of love for our daughter. She, our little one all of three-and-a-half years old, led us along the path to her death at her own pace and with so much dignity. It never occurred to us to actively bring on her death or to charge somebody else with doing so.
We are absolutely convinced that no child wants to be killed. If this wish is uttered, it is down to extenuating circumstances, pain, and the overload on the child and his or her entourage. The child might even believe that a death brought on artificially might be preferable to a natural death. But in cases like this what needs to be done is find out what the sources of the overload are and how the conditions for both child and parents can be improved.
Palliative specialist Professor Dr. Zernikow was absolutely right when he said in an interview with the Süddeutsche Zeitung that the debate in this regard is hypocritical. The real scandal is that what is missing is the urgently needed professional guidance and support for both parents and children to learn about dying at home. It’s only natural that parents are so far out of their league when they have to accompany a child facing major cramps and horrific pain to her death. And just as naturally that a child becomes afraid and feels responsible when she sees that her parents are suffering and feel overwhelmed.
Palliative medicine and some psychology should be part of a doctor’s mandatory medical school curriculum. What we need is a network of nursing staff and doctors in a position to deliver 24-hour emergency care for outpatients, and that care should be financed by health insurance policies.
Edited by Violetta Simon.