In the light of the recent law passed by the Belgian government to allow active euthanasia of children, a brave German couple have written a very personal essay describing the loss of their daughter to an aggressive brain tumour. The essay, written exclusively for the German newspaper Süddeutsche Zeitung, gives the reader insight into the harrowing experiences and the difficult decisions parents must make when faced with the imminent and unpreventable death of a child.
One year after diagnosis and numerous failed treatments aimed at reducing the tumour, Hanna Sabass and Daniel Gerecke, made the heart-rending decision not to subject their three-and–a-half year-old daughter, Annukka, to further chemotherapy which would have possibly prolonged her life for a few months. Faced with the reality of their daughter’s imminent death they describe their oncologist as being ‘rendered helpless’ when asked to explain to them what could be expected as she neared the end of her life and how they could best help their daughter. Without training or experience in palliative care, the paediatrician was unable to provide them with the guidance they so desperately needed.
They were fortunate to find help from an association known as the Bremer Engeln (Bremen Angels) who provided a bed along with the information the couple so desperately needed at this difficult time. The nurses from this association taught them to listen to their daughter and not to force any unwanted food or drink on her but were not equipped to provide the constant support for the family so necessary at this time.
This support they eventually found at the Löwenherz children’s hospice in Syke where Annuke, her parents and her sister were looked after according to their particular needs. Here they were supported by doctors and nurses with palliative training who accompanied and guided them skilfully through the two weeks preceding Annukke’s death.
As a result of their experience Annukke’s parents are convinced that when good quality palliative care is an option, no child or parent would need or want euthanasia. Her parents describe allowing the natural process and being with Annukke as she died, surrounded by those who loved her singing a final lullaby, as an ‘act of love’. In their words, ‘…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.’
In full agreement with their sentiments, child palliative specialist, Dr Boris Zernikow, says, ‘The real scandal is 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.’
The moving essay concludes with a call for palliative medicine and related psychology to be a part of every doctor’s mandatory medical school curriculum.
Read the full article: ‘It Was An Act Of Love’ – Letting A Dying Child Go