Something can come out of the child's death that will help others. I feel good knowing that it (autopsy) could help to prevent this from happening to another child or family. —Quotes from parents whose children died of a rare brain cancer, and whose tumors were collected at autopsy Post-mortem examination or autopsy, meaning to see for oneself, has been an important foundation of medicine since…
The world is round and the place which may seem like the end may also be the beginning. —Ivy Baker Priest Organ transplantation is a potentially life-saving treatment option for those with end-stage organ failure. When organ transplantation began in the 1950s, kidneys were procured from either living related donors or from patients who suffered cardiopulmonary arrest after illness or injury. Legislation, passed in 1968 in…
The world is full of suffering, it is also full of overcoming it. —Helen Keller Relief of suffering is fundamental to the practice of palliative care. On occasion, children with life-threatening illness may suffer from severe or escalating symptoms that are not ameliorated by the usual palliative interventions. When the overriding goal is comfort for the child, palliative sedation therapy (PST) provides a means to relieve…
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Only connect. That was the whole of her sermon. Only connect the prose and the passion, and both will be exalted, and human love will be seen at its height. Live in fragments no longer. —E. M. Forster, in Howards End The majority of children who die in the United States do not die at home. Nearly three-fourths of pediatric deaths occur in the hospital, mostly…
Hope is the thing with feathers that perches on the soul and sings the tune, without the words, and never stops at all. —Emily Dickinson The introduction of palliative care into the plan of care for a pediatric patient can be challenging. It is important to understand that palliative care is not synonymous with end-of-life care. The World Health Organization (WHO) defines palliative care as: The…
People are disturbed not by things but by the view they take of them. They may forget what you said, but they will never forget how you made them feel. —Carl W. Buechner Perhaps the most important thing we bring to another person is the silence in us. Not the sort of silence that is filled with unspoken criticism or hard withdrawal. The sort of silence…
The best way to become a better “helper” is to become a better person. But one necessary aspect of becoming a better person is via helping other people. So one must and can do both simultaneously. From the basic principles of human physiology, such as the heart first pumps blood to itself, to airline instructions in case of emergency, put your oxygen mask on first and…
This chapter is intended to provide the reader new to pediatric palliative care with an understanding of how to create an optimal environment for children and their families. For the experienced reader, this chapter provides an integrated, holistic perspective based upon the authors' experiences in several pediatric palliative care settings and, in doing so, offer new refinements and insights. The ultimate goal is to create the…
If they don't have scars, they haven't worked on a team. Teams don't just happen. They slowly and painfully evolve. The process is never complete. The work involved is usually underestimated. —Balfour Mount By its very nature, and in fact by legislative decree in the case of hospice, the discipline of palliative care is a team sport. The overall goal of teamwork is to enhance patient…
“I wish you knew …how much difference your caring and support can make. We encountered so many people I view them as our comrades who were truly fighting for us and Ryan while our family was being bombarded. It is these relationships that gave me the strength to be brave, the strength to endure, and in some cases, the inspiration to be a better person.” —Anne…
The tide recedes, but leaves behind bright seashells in the sand. The sun goes down, but gentle warmth still lingers in the land. The music stops, and yet echoes on in sweet refrains. For every joy that passes, something beautiful remains. — Unknown The Relationship with the Child When first meeting a child with a life-threatening illness, there are many unknowns. From your introduction to the…
Today, the road all runner's come, Shoulder high, we bring you home, And set you at the threshold down, Townsman of a stiller town. —A.E. Housman. Ethics committees and consultation in pediatrics are both relatively recent phenomena. In the 1970s, only a few hospitals had ethics committees. By the end of the 1980s, most hospitals did. The stimulus for the development of ethics committees was the…
I want to know if you will stand in the center of the fire with me and not shrink back.… I want to know if you can sit with pain–mine or your own–without moving to hide it, or fade it, or fix it. I want to know if you can be with joy–mine or your own; if you can dance with wildness and let the ecstasy…
You're a song, a wished-for song. Go through the ear to the center where sky is, where wind, where silent knowing. Put seeds and cover them blades will sprout where you do your work. —Rumi This chapter delves into interdisciplinary education and training in pediatric palliative care, both its basis in the underlying principles of adult education and its creative initiatives specific to the field. The…
No one can whistle a symphony. It takes an orchestra to play it. — Halford E. Luccock While the actual number of patients in pediatric palliative care is small relative to the number of adults, the scope of the field is vast. There are many areas and opportunities for research with the children, parents, siblings, extended family members, and peers, as well as the teachers, clinicians,…
If we listen closely, children who are dying and their families will tell us everything we need to know to care for them: they want to be loved, to be cared for and cared about, to know that their lives have meaning and purpose, to be remembered as the special people they are. Most of all, they want the people caring for them to appreciate and…
Culture does not change because we desire to change it. Culture changes when the organization is transformed; the culture reflects the realities of people working together every day. —Frances Hesselbein, The Key to Cultural Transformation, Leader to Leader, Spring 1999 The field of pediatric palliative care has evolved over the past decade in response to an escalating acknowledgment of need and a call to action by…
In thinking about where your child will die, at home or in the hospital, you have to contemplate something that is utterly heartbreaking. Recognize that you are doing the hardest, most selfless, and most loving work a parent ever could do. Take credit for that. —Joanne Hilden and Daniel Tobben This chapter explores the settings in which children with life-threatening conditions and their families receive palliative…
It takes a village to raise a child. —Igbo Proverb This well-known Igbo proverb highlights the key role played by the community in the healthy development of its members. Such a community takes an active role in the transmission of its beliefs, values, priorities, and practices. It provides the conditions that help infants, toddlers, children, and adolescents develop into responsible, emotionally healthy adults who form respectful…