If tests done during pregnancy indicate the baby's terminal, life-threatening condition, the doctor supervising the pregnancy usually refers the woman for an abortion service, in line with an option offered by the Polish law. Sometimes, however, the expectant mother for various reasons excludes such option or hesitates. Unfortunately, in such case parents are usually left to themselves. Very often they are exposed to pressure and biased opinions. Being under the influence of strong emotions and great stress, parents are at a risk of making a hasty, uninformed decision, or even the one that goes against their conscience.
The aim of perinatal palliative care is to fill the gap in the system of care over a pregnant woman and her baby
Perinatal palliative care is addressed to those expectant parents who find out that their baby has an adverse diagnosis and who choose to continue their pregnancies. Support and psychological advice is also offered to those parents who hesitate about deciding on an abortion and need to consider and discuss the consequences of either decision. Information given in an unbiased way and greater knowledge about what to expect from either solution helps parents to take a fully conscious, autonomous decision.
As part of perinatal care the hospice extends its care over unborn babies with diagnosed lethal defects, that is the ones which result in the baby's death already in the mother's womb, around birth or in early life. Should parents be under perinatal palliative care and the baby's condition after birth should allow to discharge him or her from hospital, the hospice will provide home care for the baby and his or her family and continue it as long as necessary.
The cooperation between the hospice and the family takes place from the time of diagnosis, through the pregnancy, birth, the time while the baby is alive and after he or she has passed away.
Our aim is to provide the baby with the care focused on ensuring the best quality of his or her life in accordance with the principles of palliative care, while remaining attentive to the voice of the Parents and their codeciding. Having the dignity of the baby in mind, all the actions taken by the hospice are directed towards abstaining from the actions that bear the hallmarks of persistent therapy and instead actively taking such actions that give the baby a sense of comfort and closeness to his or her Parents.
Another vital aim is the support given to the family: parents and other children during the whole process of coping with welcoming the ill baby and later with grief. Parents can count on various kinds of support: psychological, medical, spiritual, if they wish it, and social, if needed. Parents have a chance to feel that they are not utterly left alone in their experience and that they are not utterly helpless – they have an influence over many aspects of going through this period and the very meeting with the baby.
As priest Joseph Tischner, the patron of our hospice, said, “Love itself is incomprehensible, but thanks to love we can comprehend everything”. In our work and each meeting with parents and ill children we seek to understand the sense of these words anew.
To bring the idea of perinatal hospice closer to you, we invite you to watch a moving film documenting the day of birth and death of 34-week- old Erin, who was under the care of an American perinatal hospice together with her parents. (Acknowledgements to the Priest E. Dutkiewicz Hospice in Gdańsk for sharing the film).