In a question to the Care Forum (previously PaedPalCare) Prof Gerri Frager from Halifax, Nova Scotia asked her international colleagues what they felt had been the most important advances in paediatric palliative care over the past 40 years. In responses from doctors, nurses and other professionals from around the globe an overwhelming number cited the increased emphasis on perinatal and neonatal palliative care to be one of the most important advances in paediatric palliative care.
The helpful website www.perinatalhospice.org describes the perinatal hospice approach as an approach that ‘walks with these families on their journey through pregnancy, birth, and death, honouring the baby as well as the baby’s family. Perinatal hospice is not a place; it is more a frame of mind. It is a way of caring for the pregnant mother, the baby, the father, and all involved with dignity and love.’ If this is the case, then perinatal palliative care can be provided in any situation, in any country, even those with the most limited resources. As long as those caring for the family take the time to listen to and understand their needs and then do whatever they can to provide the support that will allow them to survive, and to even perhaps find isolated moments of joy, on this difficult journey.
Also challenging the need for neonatal palliative care is the vast number of preterm babies born each year. According to statistics in the WHO Global Action report on preterm birth, Born too Soon (2012), more than 1 in 10 of the world’s babies born in 2010 were born prematurely, making an estimated 15 million preterm births (defined as before 37 weeks of gestation), of which more than 1 million died as a result of their prematurity. (Blencowe et al., 2012). Prematurity is now the second-leading cause of death in children under 5 years and the single most important cause of death in the critical first month of life (Liu et al., 2012). For the babies who survive, many face a lifetime of significant disability.
The report goes on to state that there is a dramatic survival gap for premature babies depending on where they are born. For example, over 90% of extremely preterm babies (<28 weeks) born in low-income countries die within the first few days of life; yet less than 10% of babies of this gestation die in high-income settings, a 10:90 survival gap.
Resources and information
Prenatal Palliative Care is the topic for the latest issue of the Children’s Project on Palliative/Hospice Services (ChiPPs) edited by Charles A. Corr, PhD, Christy Torkildson, RN, PHN, PhDc, and Maureen Horgan, LICSW. This issue contains a wealth of articles written by parents and practitioners. Their goal in this issue is to promote reflection and involvement in palliative and hospice care when these are applied to life and death at the earliest moments of a child’s existence. This newsletter can be downloaded from http://www.nhpco.org/resources/pediatric-hospice-and-palliative-care
The Perinatal Hospice and Palliative Care website ‘A Gift of Time’ provides a comprehensive list of programmes providing perinatal palliative care from around the world including those found in the United States, Australia, Canada, Ireland, Italy, France, New Zealand, Nicaragua, Norway, Poland, Spain and the United Kingdom. It also lists numerous websites and many useful resources on this topic.
The final words go to a mother, Siri Fuglem Berg from Norway, who wrote of her experiences in the ICPCN publication ‘Touching Rainbows’ published by ICPCN in 2011. In the story A Life of Three Days, Siri describes the difficulties she experienced when she chose not to terminate her pregnancy after the baby girl she was carrying was diagnosed with Trisomy 18. While her daughter, Evy Kristine, lived for only three days, each moment of those short three days was precious and treasured. Siri writes: “I long for hospice organisations to care for women whose babies are not expected to live. I long for a world where our children are not prejudiced on account of their number of chromosomes. I long for a true right to carry to term. I long for a true right for these children to receive necessary treatment and care, including comfort care.”