Children's hospice
A children's hospice is a hospice specifically designed to help children and young people who are not expected to reach adulthood with the emotional and physical challenges they face, and also to provide respite care for their families.
Services
A typical children's hospice service offers:- Specialist children's palliative care, respite care, emergency, and terminal care
- Bereavement counselling and support, typically offered as individual home support, as well as groups and work with brothers or sisters
- Information, advice and practical assistance
- 24-hour telephone support
- A system of contact or key workers who work with named children and families to ensure support is consistent and continued between visits
- Physiotherapy and many complementary therapies
- Music and play therapy
- Activities for siblings.
Children's hospice services are dedicated to improving the quality of life of children and young people who are not expected to live to reach adulthood and their families.
They provide flexible, practical and free support at home and in the hospice to the entire family, often over many years and at any stage of the child's or young person's illness. This includes short breaks and daytime activities enabling families to get a rest; help with the control of pain or other distressing symptoms; and support for family members, including brothers and sisters.When the end of a child's life approaches, children's hospice services are there to provide end-of-life care and bereavement support for as long as it's needed, helping families and friends approach death with dignity and peace.
United Kingdom children's hospices
in Oxfordshire was the world's first children's hospice. It opened in November 1982. Helen House sprang from a friendship between Sister Frances Dominica and the parents of a seriously ill little girl called Helen, who lived at home with her family but required 24-hour care.The first children's hospice in Scotland Rachel House, run by Children's Hospice Association Scotland opened in March 1996.
There are now over 40 operational children's hospice services open across the UK. Children's hospice services in England receive an average of 5% government funding and rely heavily on public donations.
United States children's hospices
The children's hospice movement is still in a relatively early stage in the United States, where many of the functions of a children's hospice are provided by children's hospitals. In 1983, of the 1,400 hospices in the United States, only four were able to accept children. When physician's have to decide that a child can no longer be medically cured, along with the parents a decision is made to end care, keeping in mind the best interest of the child. When a decision between the parents and physicians cannot be reach, which is a very small percentage. The Physicians are then not obligated to provide any therapy care that the doctors have not deemed necessary towards the care goals of the child. Most parents of the children that have serious development disorders actively share the end of life decision making process. The main factors that parents take in consideration when making end of life care decisions is the importance to advocate for the best interest of their child. Also, the visible suffering, remaining quality of life and the child's will to survive is an influence.Key developments since the early stages of development in Children's Hospice care include:
- 1996: the Children's Hospice International's Founding Director, Ann Armstrong-Dailey began collaboration with the United States Department of Health and Human Services to produce a better solution for families and the Medicaid program at large.
- 1999: Congress approves first year CHI PACC appropriation.
- June 2005: HHS approves CHI's Program for All-Inclusive Care waiver for the state of Florida.
- September 2005: Former HHS Secretary Tommy Thompson receives CHI's "Mattie Stepanek" Award for his distinguished service on behalf of children's health care.
There are a few independent children's hospice homes working to get started, including:
- Community Hospice & Palliative Care In Jacksonville, FL Established in 1979
- George Mark Children's Hospice, opened March 2004 in California
- Ryan House, opened March 2010 in Arizona
- Angel Unaware, opened in July 2015 in Fort Worth, Texas Website not operational
- Dr. Bob's Place, opened in Fall of 2011 in Baltimore, MD, no longer operational
- Hospice of Michigan has a dedicated Pediatric Program, based out of Grand Rapids.
- Sarah House, in Cincinnati, Ohio
- Connor's House, in Philadelphia, Pennsylvania
- Crescent Cove of Minnesota, set to open November 11, 2017 in St. Louis Park, Minnesota
- Providence TrinityCare Hospice, TrinityKids Care opened in 2001, serving Los Angeles and Orange counties in California.
- Ladybug House, in Seattle, Washington. Trademarked in May 2017.
- Edmarc Hospice for Children in Portsmouth, VA. Established in 1978
Ethics involvement in children's hospices
History of ethics consultation
Ethic committees began in the late 1960s and early 1970s. The original purpose was to bring voices to conversations about ethically controversial clinical situations. The original voices brought to the table of discussion of ethic committees were Theologians, philosophers, social scientists, scholars in the humanities and other experts. Over the years ethics consultations have become more widely accepted. Most hospitals in the United States and across the world now have ethics committees and process for ethics consultation. In the early 1970s many experts realized that the medical education was not designed and physicians were not trained to deal with ethical issues associated with new technologies such as mechanical ventilation, dialysis and transplantation. After the creation of such technology kidney failure was sure to be fatal, now physicians were starting to make choices about where, when, and how someone could die. One of the solutions was to invite theologians, philosophers and social scientist that would help physicians think and solve complicated ethical issues.Canadian children's hospices
- Canuck Place Children's Hospice - opened 1995 in Vancouver, British Columbia
- Daval Hospice - planned centre in Niagara Falls, Ontario
- Rotary/Flames House - opened 2009 in Calgary, Alberta
- Philip Aziz Centre - planned centre in Toronto, Ontario
- Roger's House - opened 2006 in Ottawa, Ontario
- La Maison André-Gratton du Phare Enfants et Familles - opened 2007 in Montreal, Quebec
Australian children's hospices
- Very Special Kids - Australia's first children's hospice located in Malvern, Melbourne, Victoria, was opened in 1996
- Bear Cottage - opened in 2001 in Manly, Sydney, New South Wales
- Hummingbird House - opened in October 2016 in Chermside, Brisbane, Queensland
South African children's hospices
- Iris House Children's Hospice in Cape Town, South Africa. Founded in 2011, this is a children's hospice encompassing a holistic approach to care for the whole family.
Other nations' children's hospices
- Lilla Erstagården opened in 2010, and is located in Stockholm, Sweden. It is the first children's hospice in any of the Nordic countries.
- LauraLynn House opened in 2011, in Dublin, Ireland. It is the first children's hospice in the Republic of Ireland.
- Horizon House in Northern Ireland, opened in Belfast October 2001.
- The first Hungarian Child Hospice in Pécs, Hungary in 2011 Dóri House, and the second in Törökbálint, Hungary Tábitha House.
- Sterntalerhof opened in 1999 and is located in Loipersdorf-Kitzladen, Austria. It is still the first and only children's hospice in Austria.
- Children's Hospice in Poland. Foundation Podkarpatian Hospice for Children. Founded in 2006 and Pomeranian Hospice for Children in Gdańsk founded in 2008.