Life, Love and Loss: Recent Episodes
The Royal Children's Hospital, Melbourne
This five-part series focuses on the experience of parents of children who have died or are likely to have a short life. Despite advances in health care, children and young people still sadly die from a range of life limiting conditions. The parents in this series have been supported by palliative care teams to face multiple challenges in caring for their children. These parents bravely share the love and beauty of their children and the joy and sadness of their individual experiences. The parents in this series hope that their voices can support, inform, and better prepare other families who may need to face similar challenges. This podcast series is a collaborative project funded by the Quality of Care Collaborative Australia (QuoCCA) in partnership with The Royal Children's Hospital, Melbourne and the Victorian Paediatric Palliative Care Program. We warmly thank the parents who have generously taken part in this series.
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.
Families function in individual ways, with parents taking on various roles and responsibilities across the parenting spectrum. This episode focuses on the experiences of two fathers caring for and parenting their children with life limiting illnesses.
The death of every child is unimaginably devastating and tragic. The grief that follows is individual, powerful and lifelong — a rollercoaster of often unpredictable emotions. Families tell us it's okay to be okay, and it's okay to not be okay. In this episode, two bereaved parents discuss the range of emotions and triggers that impacted them and their family. They share the love and beauty of their children, the enormity of their losses and how connections and memories allow them to continue to live meaningful lives.
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.
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.