When Kevin George's two-month old daughter, Maddie, was dying from a rare form of meningitis in 2012, staff helped the family find a room in the hospital where they could spend her last hours together in private.
That wasn't standard practice at the time, but it is now, thanks to a new Neonatal Palliative Care Guide for Neonatal Intensive Care Units from Alberta Health Services.
"We were afforded that privacy given our circumstance, but now it's going to be ingrained," said George. "The guide is structured to help the medical team focus on the needs of children and their families, to try and make the best of a really bad situation."
Nearly 60 doctors, nurses, chaplains, social workers and family members from across Alberta, including George, worked to create the guidelines by consensus, led by University of Alberta assistant clinical professor Kumar Kumaran and associate professor Michael van Manen, both neonatologists at the Stollery Children's Hospital. The guidelines were co-written by Kumaran and van Manen, along with the University of Calgary's Amelie Stritzke, a neonatologist at Foothills Medical Centre, and the U of C's Deborah Clark, a neonatologist at Rockyview General Hospital.
Kumaran estimated that up to 10 per cent of infants admitted to neonatal intensive care units each year might benefit from palliative care at some point during their stay. They may have been born very early, with genetic disorders, heart defects or other life-limiting issues.
The guide 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.
"Palliative care is not merely a process of providing comfort for babies who are dying," said Kumaran. "It is caring for newborns who are going through critical, life-threatening illness for which one outcome could be death."
"We must weigh all the options and determine what is the right goal-is it comfort-only care, is it curative care or is it comfort and curative care? They can go hand in hand," he said.
"At the same time, we need to support families across clinical, psychological and spiritual dimensions. We must talk about the possibility of death, while not taking hope away."
Establishing realistic goals of care
George shared his experiences with Maddie and with another daughter, Everly, who died just one day after her birth in 2015.
For Maddie, the goals of care changed over time. She was born healthy, then had surgery to remove a tumour. She got meningitis while recovering and had to be resuscitated. Then her condition worsened steadily.
"Our mental space and ability to deal with the evolving goals of care lagged sometimes," George said. "There were all these things happening at a crazy pace."
George and his wife knew that baby Everly would not live for long after birth, as she had been diagnosed in the womb with a heart problem and genetic problems. Their goal of care for Everly was to allow the family, which includes two healthy boys, to do some of the usual things that families do to celebrate a birth.
"We had a photographer on standby and my mom with our kids, to rush over quickly to do family pictures," George said. "The hospital staff were supportive and aware and very respectful of the situation."
George said above all he appreciated when medical staff were open and transparent about his children's conditions.
"You can't smoke-and-mirrors the reality of the situation-you have to be respectfully honest," said George, who is now a member of the Stollery Patient and Family Centred Care Council and serves on the board of the Stollery Children's Hospital Foundation.
"You cannot execute a palliative strategy if you don't have the ability to communicate what's going on."
Tough conversations
The guide acknowledges that discussing palliative care options can be hard for health-care professionals who are used to focusing on life-saving care, but emphasizes that it's imperative they share decision-making with parents and are sensitive to parents' cultural, religious and personal beliefs and needs.
"Palliative care is not giving up care-it is reframing the goals of care," Kumaran said. "As physicians and nurses, we come into medicine to help babies. Now we have to realize, while we may not be able to impact the length of life in some babies, we're clearly impacting the comfort they can live with in whatever length of life they may have. That's the reframing we must do."
Kumaran acknowledged that using the right language is essential. For example, rather than using terms such as "withholding" or "withdrawal" of treatment in end-of-life situations, the guide suggests health-care providers discuss protecting the infant from unhelpful or painful interventions.
The guide encourages health-care providers to ask about the family's values, hopes and fears. It suggests using phrases such as, "I'm sorry for your loss" and, "I don't know what to say, but I am here for you," rather than things like, "It's best this way" and, "You can have more children."
Health-care providers are encouraged to be honest about their own emotions, without making value judgments for or about the families.
Marcia Ergezinger, a neonatal nurse practitioner in Edmonton with more than 30 years of experience who was also part of the guideline team, said the guide will be helpful for trainee doctors and nurses, or any staff member who is uncomfortable approaching palliative conversations.
"It allows them to not be so scared to talk to parents about bereavement," Ergezinger said.
The guide includes instructions to support pharmacological and non-pharmacological methods of alleviating symptoms right before death, including doses for easy reference.
Taking memories home
Ergezinger said another concrete action the guide suggests is providing the family with a memory box as they leave the hospital, including a teddy bear or blanket the baby used, plaster moulds of the baby's hands and feet, a lock of hair, or hand and foot prints. Photographs of the baby should be taken and offered to the family, and stored in case they change their mind later.
"Never let the families leave empty-handed," Ergezinger said. "You're trying to create positive memories for them of a life that was shortened."
Ergezinger likened the guide to a recipe book that will be followed by staff across the province.
"You don't get a do-over," she said. "You want to make it the least traumatic that you can for the families.
"With this guide, parents can know they are getting consistent care that has been shown to be helpful to other families."
Kevin George is confident neonatal staff and other families will now benefit from his own family's difficult experiences.
"Even if you know absolutely nothing about anything medical or science isn't your thing, you still have the right to chime in on what's going on with your child, but not all parents necessarily feel comfortable doing that," George said.
"If this guide can alleviate anxiety or lack of understanding for people who are in the throes of it, that to me would be a win."
The guide was published and funded by the Maternal Newborn Child and Youth Strategic Clinical Network of Alberta Health Services. Initial funding for research into the attitudes of medical staff toward palliative care was supported by the U of A's Department of Pediatrics, and additional expertise in research methodology was provided by the Women and Children's Health Research Institute, through funding from the Stollery Children's Hospital Foundation.