The Institute of Medicine’s report, “When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families,” addresses the critical need to improve the quality of care that children with life-limiting illnesses receive. The report highlights the difficulties faced by children and their families when dealing with end-of-life care, and the need for health care providers to offer comprehensive and compassionate care.
The experience of losing a child is one of the most difficult and traumatic events that a parent or caregiver can go through. It is an experience that is often described as indescribable, and it can have a profound impact on one’s physical, emotional, and psychological wellbeing. Parents who lose a child often experience a range of intense and conflicting emotions, including shock, disbelief, anger, guilt, and profound sadness. These emotions can be overwhelming and may lead to feelings of isolation and hopelessness. The grieving process for the loss of a child can be a long and difficult journey that is different for everyone.
Parents who have lost a child often experience physical symptoms as well, such as exhaustion, loss of appetite, and difficulty sleeping. These physical symptoms can exacerbate the emotional pain and make the grieving process even more challenging. The experience of losing a child can also have a significant impact on one’s relationships with others. Parents may feel a sense of distance from their partner or other family members who may not fully understand their grief. They may also feel unsupported or misunderstood by friends and colleagues.
Furthermore, losing a child can also have financial implications, particularly if the child required significant medical care before their death. Parents may also need to take time off work to grieve and cope with the loss, which can impact their income and financial stability.
The report emphasizes the need for healthcare providers to offer palliative care, which is aimed at improving the quality of life for patients and their families by addressing physical, psychological, social, and spiritual needs. It also stresses the importance of communication between healthcare providers, children, and their families, to ensure that patients receive the care they need and that their preferences and values are respected.
One of the key themes of the report is the importance of taking a family-centered approach to care. This approach involves recognizing that the patient is not just the child, but also the family unit as a whole. It means acknowledging the unique needs of each family and providing support and resources to help them navigate the difficult experience of losing a child.
The report also highlights the need for healthcare providers to be trained in the unique needs of pediatric palliative care, which differs from adult palliative care in several important ways. One significant difference is that children receiving palliative care often require more emotional support and care from the medical team, as well as their families. Children may have difficulty understanding their condition and the implications of their treatment, which can lead to fear and anxiety. Thus, palliative care providers need to be skilled in communication and education and a collaborative and holistic approach, with a focus on addressing the needs of the whole family. The report emphasizes the importance of supporting parents and caregivers in addition to the child receiving palliative care, as they may also be experiencing significant stress and grief.
Pediatric palliative care may also involve different ethical considerations. For example, the decision-making process for children with life-limiting conditions often involves complex considerations related to the child’s best interests, quality of life, and long-term prognosis. Thus, providers need to be skilled in navigating these complex ethical considerations and communicating with parents and caregivers. It emphasizes the importance of interdisciplinary care, involving healthcare providers from a range of specialties including pediatricians, nurses, social workers, chaplains, and psychologists.
Another key theme of the report is the importance of ensuring that children receive appropriate pain management, including access to opioids when necessary. The report acknowledges the concerns around opioid use in children, but emphasizes that when used appropriately, opioids can be an important tool for managing pain and improving quality of life.
Losing a child is a deeply personal and devastating experience that can have a significant impact on every aspect of one’s life. The report “When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families” emphasizes the critical need to improve the quality of care that children with life-limiting illnesses receive. It is important for parents who have experienced this loss to seek support and care from loved ones, mental health professionals, and support groups to help them navigate the difficult grieving process and come to terms with their loss. The report highlights the importance of taking a family-centered collaborative approach to care, providing appropriate pain management, and ensuring that healthcare providers are trained in the unique needs of pediatric palliative care.
Reference:
Author(s): Field MJ, Behrman RE (eds) Title: When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families
Publisher: National Academies Press
Year: 2003
Place of publication: Washington, DC