Children's Hospice

The article concludes with a look at hope, the concept of simultaneous care and the vision of Children's Hospice for the future. ______________________________
Vacel Havel once said of hope:
Hope is not the conviction that something will turn out well but the certainty that something makes sense, regardless of how it turns out.Children's hospice programs are helping children and families hold on to hope...how ever that hope may be defined...by helping things to turn out well and embracing healing even when there is no cure.
Hopes for Children's Hospice Programs Two of the major children's hospice organizations have offered their look at the future of children's hospice.
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The first comes from the Children's Hospice and Palliative Care Coalition. Their vision is:
To ensure that seriously ill children and their families get the compassionate medical, emotional, and spiritual support they need to hold on to hope - whatever form hope takes- whether it be hope for a cure, a family vacation, time with family and friends, finishing the school year, graduation, or relief of pain and a peaceful death.
Finally Ann Armstrong-Dailey, Founding Director and CEO of Children's Hospice International hopes for Children's Hospice are that an integrative approach to care will emerge:
Our ultimate goal is to so ingrain the hospice concept into pediatrics that it isn't considered a separate specialty, rather, an integral part of health care for children and adolescents.
Therefore, the goal for children's hospice programs is to make the hospice style of care available for all children who need it, regardless of where they are in the treatment, whether they have a terminal illness or not. The elements of hospice or palliative care are offered at the time of diagnosis and continued throughout the course of illness, whether the outcomes ends in cure or death. Hospice becoems part of an integrative approach to medical care.
Simultaneous Care - Care Throughout the Course of Illness
The goals for the future of children's hospice are similar to the approach being called Simultaneous Care. With a Simultaneous Care approach the system of care is one that enhances patient choice by allowing patients and families to have access at the same time to two beneficial options--palliative care and continued medical therapies.
The Simultaneous Care approach optimizes hospice and palliative care goals of treatment while at the same time offering patients with advanced cancer access to new and potentially better therapies. According to one of my adult hospice mentors, Dr. Fred Meyers, simultaneous care...
...is not about giving up. It's about increased quality of life and enhanced coordination of care. It is not about dying. It is about living with cancer. It's not less care. It's more care.
With this kind of simultaneous approach to care, hospice or palliative care becomes one of the many options available to children's physician to take care of their young patients. ______________________________
© 2006 Kirsti A. Dyer MD, MS, FT. Licensed for use to About.com.
About Children's Hospice and Palliative Care Coalition The Children's Hospice and Palliative Care Coalition places the priority on the needs of the entire family when a child is diagnosed with a life-threatening condition. Children's Hospice works with hospitals, hospices and community organizations to improve the well-being of the child by promoting compassionate, family-centered care from the time of diagnosis and throughout the course of treatment. Their mission is to ensure that children with life-threatening conditions can live well and die gently.
About Children's Hospice International Children's Hospice International (CHI), a non-profit organization, was founded in 1983 to promote hospice support through pediatric care facilities, encourage the inclusion of children in existing and developing hospice, palliative, and home care programs and include the hospice perspectives in all areas of pediatric care, education, and the public arena. CHI provides education, training and technical assistance to those who care for children with life-threatening conditions and their families. Their mission is to ensure that the hospice concept becomes an integrated and integral part of health care for children and adolescents.
Sources: Children's Hospice International. Who We Are. 9 December 2006. <http://www.chionline.org/whoweare> Children's Hospice and Palliative Care Coalition. Mission Possible: About Us. 9 December 2006. <http://www.childrenshospice.org/about/> Committee on Bioethics and Committee on Hospital Care. American Academy of Pediatrics: Policy Statement. Palliative Care for Children. Pediatrics 2000 106;2:351-357. <http://aappolicy.aappublications.org/cgi/content/full/pediatrics;106/2/351> Morain C. It's About Living. UC Davis Magazine. Fall 2005. Vol. 23: No. 1. 9 December 2006. <http://ucdavismagazine.ucdavis.edu/issues/fall05/feature_1.html> Meyers FJ, Linder J, Beckett L, Christensen S, Blais J, Gandara DR. Simultaneous care: a model approach to the perceived conflict between investigational therapy and palliative care. J Pain Symptom Manage. 2004 Dec;28(6):548-56.
Additional Resources
Hospice, Palliative Care for Newborns, Infants and Children
The Nick Snow Children's Hospice and Palliative Care Act of 2006
What is Hospice?
What is Palliative Care?
What is Simultaneous Care?
Support Children's Hospice by Purchasing a Hospice Bracelet
When Children Die: Improving Palliative and End-of-Life Care for Child - Online Book Resource


Children's Hospice - End of Life Care for Children
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Embracing Healing - Even When There is No Cure
Children ≠ Hospice When most people think of hospice care, or care provided at the end of a life, they don't usually think about children, perhaps because the concepts of children and dying and death don't go together in the typical American culture.
Melissa Gilbert, President of the Board of Directors for Children's Hospice and Palliative Care Coalition offers some wise words on this topic:
...the words 'children' and 'hospice' shouldn't go together, but they do. Children should be allowed to pass on with grace and dignity. Children's Hospice addresses the needs of the entire family...mind, body and spirit...embracing healing even when there is no cure. The support that the Children's Hospice and Palliative Care Coalition provides is invaluable.
While no one would electively choose to have their child need hospice care, it is good to know that the climate and the options for children needing hospice is changing.
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Children's hospice programs focus on treating the whole person and the family; they also embrace healing even when there is no cure. Most of all they are helping children and families hold on to hope...however that hope may be defined.
History of Children's Hospice The hospice and palliative care movement has grown rapidly in the past years, with more than 4,160 hospices in the United States. Sadly, children have often not been included in many hospice programs for a variety of reasons. The Children's Hospice International (CHI) estimate that there are more than 7 million children and their families around the world could benefit from children's hospice programs or palliative care. Additionally, CHI estimates that less than one percent of children needing hospice care in the United States receive it.
In 1983 there were 1,400 hospices in the United States, but only four were able to accept children. Through the efforts of dedicated individuals and groups by 2006 many of the hospices in the United States now consider accepting children as patients for hospice care. In addition, there are over 450 programs have children-specific hospice, palliative or home care programs.
Being Eligible for Hospice or Palliative Care Children may have problems receiving hospice care because of the current requirements to be eligible for care. In order to qualify for hospice care the child's doctor must state that the child has only six months to live and the child must agree to stop all treatment to try and cure their disease.
While a standard requirement for adult hospice programs, this concept of an "all or nothing" approach is difficult for many who have or treat children to understand. This dichotomy can cause a great deal of heart-ache, unnecessary confusion, anxiety and stress among the patients, medical professionals, families and caregivers that can ultimately compromise the child's care.
Nick Snow, neuroblastoma survivor and former spokesperson for Children's Hospice, was the child known to have "flunked" hospice twice. He had once said about this dichotomy of care:
I don't understand why you should lose all this great support just because you want to live.
Fortunately things are starting change.
Changing Views on Children's Hospice Mattie Stepanek, inspirational child poet and peace-maker who was afflicted with Dysautonomic Mitochondrial Myopathy, offered these wise words about children and hospice support or palliative care in February of 2000:
We don't have to wait until we are very sick and know that this might be 'it.' We can get support from the day we learn something could happen.
Later in 2000, the Committee on Bioethics and Committee of Hospital Care of the American Academy of Pediatrics published a policy statement on "Palliative Care for Children" that stated their views on providing palliative care. The American Academy of Pediatrics supports an integrated model of palliative care, one in which "the components of palliative care are offered at diagnosis and continued throughout the course of illness, whether the outcomes ends in cure or death."
Furthermore, they went on to state in their position paper that:
If palliative care is reserved for children who are dying or have a terminal condition, other patients who may benefit from these services may not receive them....With a broader definition that includes children living with a life-threatening condition, all children who need palliative care may benefit.
Another benefit of introducing an integrated palliative care approach (or a simultaneous care model) is that including symptom management and counseling early on in the course is beneficial in helping the child and the family to better cope with the illness.
Changing Legislation - The Nick Snow Children's Hospice and Palliative Care Act In September 2006 California Governor Arnold Schwarzenegger signed Assembly Bill 1745 into law. The new law, also know as "The Nick Snow Children's Hospice and Palliative Care Act of 2006," was named after Nick Snow, a child hospice patient and advocate. Nick died in April 2006, cancer free, following an intestinal infection.
This landmark legislation allows children in California diagnosed with serious illnesses to receive hospice and palliative care. The new law replaces older regulations that only provided hospice and palliative care to children whose families had legally given up all chance of their recovery. It is estimated that 10,000 to 14,000 children in California and their families will benefit yearly from the new legislation.