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The Perspective
The Perspective

February 13, 2020

Talking to families about advanced care planning: Perspectives of families and health-care providers

Drs. Julia Orkin and Reshma Amin  are SickKids leaders in the care of children with medical complexity who are technology-dependent. Dr. Orkin is the Medical Director of the Complex Care Program and Dr. Amin is the Director of the Long-term Ventilation Program. SickKids is home to the largest program in Canada for children with medical complexity as well as for long-term ventilation. Their new study, Understanding of Advance Care Planning in Children with Medical Complexity, was published February 13, 2020 in Pediatrics.

Two women, Julia Orkin and Reshma Amin, dressed in business casual smiling
Lead authors of the study, Drs. Julia Orkin, Medical Director of the Complex Care program at SickKids (left), and Reshma Amin, Director of the Long-term Ventilation Program at SickKids (right)

In caring for families who have children with medical complexity, we recognized early in our careers that training was limited for physicians on how to best support these families in discussing their goals of care. Often, these discussions, known as advance care planning discussions, focused only on end-of-life care at times of crisis.  Families however often wanted to discuss their goals for their child and family more broadly in terms of goals related to quality of life and school attendance or family time. This broader definition of advance care planning was coming through in our clinical encounters and this stemmed our interest in researching the topic.

Children with medical complexity often have life-limiting conditions with no unifying diagnosis and an unclear prognosis, so advance care planning conversations need to be uniquely tailored to this population.

Historically, much of the literature and expertise in this area has been focused on populations with a clearer trajectory of illness, such as oncology. Our research team’s primary objective was to develop an in-depth understanding of the advance care planning experiences from the perspectives of both parents and health-care providers of children with medical complexity.

We conducted 25 semi-structured interviews with parents of children with medical complexity and health-care providers from various disciplines. These interviews revealed that families wanted their clinical teams to come to these discussions with a holistic mindset, understanding the families’ beliefs and values, hopes and goals, and perceptions of quality of life. Families wanted to be supported to be partners in decision-making with early and ongoing conversations. Many health-care providers reflected that they did not have specific training in this area, other than on the job or through mentorship and role modelling from colleagues and others.  

Our study confirmed the need for family-centred advance care planning for children with medical complexity and their families. As physicians who have seen firsthand how important these conversations can be to families and to their care teams, we are committed to helping to enhance this critical component of care. Our goals include the development of tools to ensure these rich and valuable exchanges can take place and help to shape individualized care plans for this patient population.