February 19, 2020
Newborn baby Everly is held by her mom Kim and surrounded by the love of her family, dad Kevin and brothers Mason and Maxx. The George family knew their time with Everly would be short, perhaps only hours, and planned for a photographer to be available as part of their palliative care plan at Sturgeon Community Hospital in St. Albert.
Story by Sharman Hnatiuk | Photo by Claudine Lavoie
ST. ALBERT — On Aug. 27, 2015, Kevin George and his wife Kim faced what they knew would be one of their most difficult days. It was the day their daughter Everly was born — and the couple knew their baby girl wouldn’t live long after birth.
Diagnosed with heart and genetic problems in the womb, Kevin and Kim had some time to plan how to spend their limited time with Everly.
They made the most of their 10 brief hours, and together with their two sons, Maxx and Mason, the family took photos and made mementos of her life — all while feeling supported, respected and cared for by healthcare professionals on the labour and delivery unit at the Sturgeon Community Hospital in St. Albert.
The careful planning for that day came from the experience they had in 2012, when their two-month old daughter Maddie passed away in the Neonatal Intensive Care Unit (NICU) at Stollery Children’s Hospital.
Kevin wanted to help ensure families in similar positions with their babies received the same compassionate support and respect during such a difficult time. To do that, he collaborated with nearly 60 doctors, nurses, chaplains, social workers and family members from across Alberta to develop a Neonatal Palliative Care Guide for healthcare providers working in Neonatal Intensive Care Units (NICUs).
“We met so many people along our care journey who wanted to provide us with extra care, but at times it felt like they were going out of their way or doing something they weren’t supposed to,” says George.
“Having a guide empowers healthcare providers and helps standardize care so all families across the province can be supported throughout such a difficult time.”
Palliative care embraces physical, emotional, social, cultural and spiritual foundations of care while including the management of distressing symptoms, care at the end-of-life and bereavement support.
This holistic approach means the infant is treated within the context of their family. The values and beliefs of the family are explored and supported in a model of shared decision-making.
The Neonatal Palliative Care Guide, which launched in 2019, provides detailed practice standards and practical steps for medical staff to take while providing palliative care in a neonatal unit.
It suggests techniques for having difficult conversations when establishing goals of care, including phrases to use or avoid, and questions to ask families about their values and wishes for their babies.
Dr. Kumar Kumaran, neonatologist at the Stollery Children’s Hospital, says he believes the collaboration from physicians and staff at NICUs across the province, combined with the family perspective, is a major step towards ensuring every infant and family member is treated with dignity and respect whatever their physical or intellectual ability, gestational age or size.
“Families were very forthcoming about their experience during a very vulnerable time in their lives, and we found the palliative care provided in the NICU was often ad-hoc and inconsistent,” adds Dr. Kumaran.
“We now have a guideline for providing the consistent care Albertans deserve. This guide incorporates knowledge and consensus based guidance from physicians, nurses, and allied health professionals from across the province.
“It offers the best palliative care practices for infants with life-limiting conditions and practical tips to support their families served in the NICU.”
The Neonatal Palliative Care Guide for NICUs, an innovative approach to a shared partnership around palliative care, is one of the initiatives supported by the Maternal Newborn Child and Youth Strategic Clinical Network.
