Life, Love and Loss

The suggestion of a referral to palliative care is often scary and overwhelming. Families approach referrals in individual ways. Some avoid it at all costs, some openly embrace it and there is a vast spectrum of responses in between. Some families feel like a referral to palliative care signifies “giving up” on their child or foregoing further treatment and care. Others find value in hearing how palliative care can make a difference to support their child and family.

In this episode, we hear from three parents who reflect on how their family tackled a referral to palliative care, how they managed their fears and hesitations, and what they would like to share with other families about the experience.

Good paediatric palliative care includes care of the whole family, including brothers and sisters. Parents are often fearful or anxious about how to approach conversations about illness, death and dying with siblings of their sick child. In this episode, we hear from two parents who share how they approached these conversations with their children. They share with us what worked, what was challenging, and how they keep the memory of their child alive in their family.

The death of a child is a profoundly devastating experience for every family. Families live with intense grief, many varied challenges, and a rollercoaster of often unpredictable emotions. Family’s experience and process grief in very individual ways. The loss of a child has lifelong impacts on all family members, together and individually as they piece together a new life without the physical presence of their child. In this episode we hear from parents who share their family’s grief experience following the death of their child only one year ago. They will discuss the challenges they have faced, the ways they continue to honour and remember their child and how they continue to live in the wake of such tragedy.

The death of an infant before or after birth is a profoundly sad experience with many layers of grief and loss for every family. New parents are forced to confront the death of their baby and the loss of their hopes, dreams, and expectations for the future life of their child and family. Parents may experience challenges to their own identity and how they are treated by their family, friends, and community. We hear from families discussing their experience of perinatal loss and the tragedy of the death of their baby.

The needs of individual children and families can be very different. This is the case when a child is living with illness, and at the end of their life. Families vary in where they wish to be, and who they want around them. Families need opportunities to ask questions and to feel supported with the right information at the right time. This episode explores how families prepare for and navigate the devastating loss of their child. Parents discuss their different needs for information and guidance, and how to know what you don’t know. They bravely share their thoughts and what they wish they had known so that other families can learn from their experiences.