Kim Widger, PhD, is Associate Professor and Tier 2 Canada Research Chair in Pediatric Palliative Care at the Lawrence S. Bloomberg Faculty of Nursing, University of Toronto and Nursing Research Associate at the Hospital for Sick Children and Co-Chair of the all-day seminar, "Rethinking the "care" in Pediatric Palliative Care", Oct.19, 2022 at the .听
. 鈥淓very child diagnosed with a life-threatening condition should receive optimal palliative care throughout their illness,鈥� says the Associate Professor and Tier 2 Canada Research Chair in Pediatric Palliative Care at the Lawrence S. Bloomberg Faculty of Nursing, University of Toronto and Nursing Research Associate at the Hospital for Sick Children.
Given that only 18% of Canadian children who could benefit from palliative care actually receive it, she has her work cut out for her. Her research program is entitled Pathways to Enhanced Pediatric Palliative Care., and, as she points out, one of the key challenges for healthcare professionals working in the field is to identify children in need of palliative care at an earlier stage of illness. Early intervention is critical to helping children, parents and siblings cope with life-threatening conditions. 鈥淥ur role is to coach and guide families throughout the illness in what to expect, how to deal with grief, fears, and anxiety, and to identify their goals so that the care provided is in keeping with their wishes.鈥� notes Professor Widger.
Pediatric palliative care focuses on alleviating the physical, social, psychological, and spiritual suffering experienced by children and families while promoting quality of life, fostering family connections, and sustaining hope despite the possibility of death. This family-centered approach involves shared decision-making as well as sensitivity to the family鈥檚 cultural and spiritual values, beliefs, and practices.
While all forms of palliative care focus on symptom management, pain control and defining goals of care, end-of-life care for the pediatric population must consider the developmental stage of the ill child. For example, adolescence is a time for establishing an identity separate from parents, with peer groups taking on greater importance. Thus, palliative care for an adolescent may have a greater focus on actively involving them in making decisions about care, honoring their wishes, and supporting connections with their peers. In contrast, with infants and very young children, the burden of decision-making falls on the parents and the child will have support needs specific to their developmental stage. For example, Professor Widger recalls caring for an infant whose family took their newborn into the hospital鈥檚 play garden so that she could have the experience of being in the fresh air and sunshine while her sister played beside her before she passed away. 鈥淭here is so much we can do to help families make the best of a tragic situation,鈥� she insists.
As a member of the Executive Committee for the upcoming International Palliative Care Congress in Montreal, October 18-21, 2022, Professor Widger believes that the congress is an important forum for moving the field of palliative care forward. 鈥淭he Congress brings together people from all over the world to share their approaches and interventions. It gives us the opportunity to hear firsthand about research and other projects that we might want to replicate in our own corner of the world,鈥� she explains.
To that end, Professor Widger is excited about the pediatric palliative care program she and anthropologist Mary Ellen MacDonald have put together for the first day of the Congress. Presenters include Dr. Richard Hain, from the Children鈥檚 Hospital for Wales, who will speak on Pediatric Palliative Care: What鈥檚 the Difference? Another session entitled Caring Communications will feature Dr. Pam Hinds, a nurse researcher from Children's National Medical Center in Washington. Other sessions will focus on Innovations in Care and Caring for Ourselves and Each Other, highlighting the importance of self-care for professionals involved in this sometimes heartbreaking yet always necessary work.
Ultimately, concludes Professor Widger, 鈥淲e can鈥檛 keep children and families from suffering, but we can keep them from suffering for the wrong reasons. The congress allows us to share ideas and best practices so we can try to alleviate rather than add to a family鈥檚 suffering.鈥�
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