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.
Children's hospice services work with families from all faiths, cultures and ethnic backgrounds and respect the importance of religious customs and cultural needs that are essential to the daily lives of each family. Many have a chaplain who is familiar with a variety of faiths and customs. Each service is typically an independent charity which relies on public support to continue their work.[citation needed]
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.[1]
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.[citation needed]
United Kingdom children's hospicesEdit
Helen House in Oxfordshire was the world's first children's hospice.[2] 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.[3]
There are now over 40 operational children's hospice services open across the UK.[3] Children's hospice services in England receive an average of 5% government funding and rely heavily on public donations.
United States children's hospicesEdit
Community Hospice & Palliative Care Logo with a Pediatric Care Program called Community PedsCare
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 physicians 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 reached, 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.[5] 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 into consideration when making end-of-life care decisions are the importance to advocate for the best interest of their child. Also, the visible suffering, the remaining quality of life, and the child's will to survive is an influence.[6]
Key developments since the early stages of development in Children's Hospice care include:
1996: the Children's Hospice International's (CHI) Founding Director, Ann Armstrong-Dailey began collaboration with the United States Department of Health and Human Services (HHS) 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 (CHI PACC) 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.[7]
Through the efforts of CHI, most of the over 3,000 hospices in the U.S. will now consider accepting children. Also, approximately 450 programs have children-specific hospice, palliative, or home care services.[8]
There are a few independent children's hospice homes, including:
Community Hospice & Palliative Care In Jacksonville, FL Established in 1979
George Mark Children's Hospice, opened March 2004 in California[9]
Connor's House, in Philadelphia, Pennsylvania (Operational from 2007 to August 2016, defunct)[14]
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.[15]
Edmarc Hospice for Children in Portsmouth, VA. Established in 1978
Ethics involvement in children's hospicesEdit
Children's hospitals today have ethics consultation. Ethics consultation is a conference that is intended to help Patients, Staff and other resolve ethical concerns. It all begins with taking into consideration of the patient's ethical beliefs, families, and those professionals involved in the case. Different individuals tend to abide by different ethical beliefs and ethical dilemmas tend to rise out of the difference in values or the priority of those shared values. Additional Institutions that care for those patients have certain set of values. Some institutions are specialized in prioritizing patient care and others are devoted to research. Some Hospitals are public, others are private. Some serve their community and values can vary from community to community which can also cause disagreements.[16] Institutions and hospitals also have value of their own that are written in their Mission Statement of the Institution.
History of ethics consultationEdit
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. Before 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.[17]
Canadian children's hospicesEdit
Canuck Place Children's Hospice - opened 1995 in Vancouver, British Columbia
Daval Hospice - planned centre in Niagara Falls, Ontario
La Maison André-Gratton du Phare Enfants et Familles - opened 2007 in Montreal, Quebec
Australian children's hospicesEdit
Very Special Kids - Australia's first children's hospice located in Malvern, Melbourne, Victoria, was opened in 1996[18]
Bear Cottage - opened in 2001 in Manly, Sydney, New South Wales[19]
Hummingbird House - opened in October 2016 in Chermside, Brisbane, Queensland[20]
South African children's hospicesEdit
Iris House Children's Hospice[21] 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 hospicesEdit
Shooting Star Children's Hospices was formed in 2011 from the merger of two existing children's hospices. CHASE (Children's Hospices Association for the South-East) and The Shooting Star Trust combined to become Shooting Star Chase, which later became Shooting Star Children's Hospices in February 2019.[22]
Lilla Erstagården opened in 2010, and is located in Stockholm, Sweden. It is the first children's hospice in any of the Nordic countries.[23]
LauraLynn House opened in 2011, in Dublin, Ireland. It is the first children's hospice in the Republic of Ireland.[24]
Horizon House in Northern Ireland, opened in Belfast October 2001.[25]
The first Hungarian Child Hospice in Pécs, Hungary in 2011 Dóri House,[26] and the second in Törökbálint, Hungary Tábitha House.[27]
Children's Hospice in Poland. Foundation Podkarpatian Hospice for Children. Founded in 2006[29] and Pomeranian Hospice for Children in Gdańsk founded in 2008.[30]
The Ezgu Amal Charitable Foundation initiated "Taksin" ("Solace") a children's hospice for palliative care in the Zangiata District of Tashkent.[31] Opened on 25 August 2022, it is the first facility of its kind in Uzbekistan.[32]
^"Children's Charities - Children Hospices - Together for Short Lives". www.childhospice.org.uk.
^"Helen & Douglas House - the World's first children's hospice providing hospice care for children and young adults". www.helenanddouglas.org.uk. Retrieved 19 March 2014.
^ ab. Helen & Douglas House. Archived from the original on 2007-05-16. Retrieved 2007-07-08.
^McIver, Brian (2016-03-21). "Inspirational Scottish CHAS hospice Rachel House celebrates its 20th birthday". www.dailyrecord.co.uk. Retrieved August 20, 2017.
^Puckey, Michele; Bush, Andrew (2011). ""Passage to Paradise" Ethics and end-of-life decisions in children". Paediatric Respiratory Reviews. 12 (2): 139–143. doi:10.1016/j.prrv.2010.10.003. PMID 21458743.
^Zaal-Schuller, I.H.; De Vos, M.A.; Ewals, F.V.P.M.; Van Goudoever, J.B.; Willems, D.L. (2016). "End-of-life decision-making for children with severe developmental disabilities: The parental perspective". Research in Developmental Disabilities. 49–50: 235–246. doi:10.1016/j.ridd.2015.12.006. PMID 26741261.
^(PDF). Children's Hospice International. October 13, 2005. Archived from the original (PDF) on September 28, 2007. Retrieved 2007-07-08.
^. Children's Hospice International. Archived from the original on 2007-07-24. Retrieved 2007-07-08.
^"Our story". Shooting Star Children’s Hospices. Retrieved 2023-05-09.
^. Archived from the original on 2011-07-16. Retrieved 2010-11-25.
^"State's first hospice for children 'just a godsend'". The Irish Times.
^. Archived from the original on 2013-10-02. Retrieved 2013-09-03.
^. Archived from the original on 2013-09-17. Retrieved 2013-06-27.
^"Tábitha - Gyermekhospice – hogy mindig legyen segítség". www.tabitha.hu.
^"About us - Sterntalerhof". www.sterntalerhof.at.
^"Fundacja Podkarpackie Hospicjum dla dzieci - Komu przekazać 1% podatku?". www.hospicjum-podkarpackie.pl.
^"Fundacja Pomorskie Hospicjum dla dzieci". www.pomorskiehd.pl.
^"Uzbekistan's first children's hospice opens in Zangiota". daryo.uz/en. 2022-08-25. Retrieved 2023-02-21.
^"Children's hospice was opened in Zangiata district of Tashkent region". uzdaily.com. 28 August 2022. Retrieved 2023-02-21.
October 22, 2023
children, hospice, this, article, multiple, issues, please, help, improve, discuss, these, issues, talk, page, learn, when, remove, these, template, messages, this, article, reads, like, directory, wikipedia, policy, generally, considers, directories, articles. This article has multiple issues Please help improve it or discuss these issues on the talk page Learn how and when to remove these template messages This article reads like a directory Wikipedia policy generally considers directories in articles to be unencyclopedic and potential spam Please improve this article to conform to a higher standard of quality and to make it neutral in tone If it cannot be properly modified the article is likely to be merged redirected or deleted September 2018 Learn how and when to remove this template message This article relies excessively on references to primary sources Please improve this article by adding secondary or tertiary sources Find sources Children s hospice news newspapers books scholar JSTOR September 2018 Learn how and when to remove this template message Learn how and when to remove this template message 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 Demelza Hospice Care for Children in Kent England Contents 1 Services 2 United Kingdom children s hospices 3 United States children s hospices 3 1 Ethics involvement in children s hospices 3 1 1 History of ethics consultation 4 Canadian children s hospices 5 Australian children s hospices 6 South African children s hospices 7 Other nations children s hospices 8 See also 9 ReferencesServices EditA typical children s hospice service offers citation needed Specialist children s palliative care respite care emergency and terminal care this may be at the hospice or within the child s home 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 work with families from all faiths cultures and ethnic backgrounds and respect the importance of religious customs and cultural needs that are essential to the daily lives of each family Many have a chaplain who is familiar with a variety of faiths and customs Each service is typically an independent charity which relies on public support to continue their work citation needed 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 1 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 citation needed United Kingdom children s hospices EditHelen House in Oxfordshire was the world s first children s hospice 2 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 3 The first children s hospice in Scotland Rachel House run by Children s Hospice Association Scotland opened in March 1996 4 There are now over 40 operational children s hospice services open across the UK 3 Children s hospice services in England receive an average of 5 government funding and rely heavily on public donations United States children s hospices Edit nbsp Community Hospice amp Palliative Care Logo with a Pediatric Care Program called Community PedsCareSee also Hospice care in the United States 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 physicians 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 reached 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 5 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 into consideration when making end of life care decisions are the importance to advocate for the best interest of their child Also the visible suffering the remaining quality of life and the child s will to survive is an influence 6 Key developments since the early stages of development in Children s Hospice care include 1996 the Children s Hospice International s CHI Founding Director Ann Armstrong Dailey began collaboration with the United States Department of Health and Human Services HHS 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 CHI PACC 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 7 Through the efforts of CHI most of the over 3 000 hospices in the U S will now consider accepting children Also approximately 450 programs have children specific hospice palliative or home care services 8 There are a few independent children s hospice homes including Community Hospice amp Palliative Care In Jacksonville FL Established in 1979 George Mark Children s Hospice opened March 2004 in California 9 Ryan House opened March 2010 in Arizona 10 Angel Unaware 11 opened in July 2015 in Fort Worth Texas 12 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 13 Connor s House in Philadelphia Pennsylvania Operational from 2007 to August 2016 defunct 14 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 15 Edmarc Hospice for Children in Portsmouth VA Established in 1978Ethics involvement in children s hospices Edit Children s hospitals today have ethics consultation Ethics consultation is a conference that is intended to help Patients Staff and other resolve ethical concerns It all begins with taking into consideration of the patient s ethical beliefs families and those professionals involved in the case Different individuals tend to abide by different ethical beliefs and ethical dilemmas tend to rise out of the difference in values or the priority of those shared values Additional Institutions that care for those patients have certain set of values Some institutions are specialized in prioritizing patient care and others are devoted to research Some Hospitals are public others are private Some serve their community and values can vary from community to community which can also cause disagreements 16 Institutions and hospitals also have value of their own that are written in their Mission Statement of the Institution History of ethics consultation Edit 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 Before 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 17 Canadian children s hospices EditCanuck 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 The Children s Hospice planned centre in Toronto Ontario Roger s House opened 2006 in Ottawa Ontario La Maison Andre Gratton du Phare Enfants et Familles opened 2007 in Montreal QuebecAustralian children s hospices EditVery Special Kids Australia s first children s hospice located in Malvern Melbourne Victoria was opened in 1996 18 Bear Cottage opened in 2001 in Manly Sydney New South Wales 19 Hummingbird House opened in October 2016 in Chermside Brisbane Queensland 20 South African children s hospices EditIris House Children s Hospice 21 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 EditShooting Star Children s Hospices was formed in 2011 from the merger of two existing children s hospices CHASE Children s Hospices Association for the South East and The Shooting Star Trust combined to become Shooting Star Chase which later became Shooting Star Children s Hospices in February 2019 22 Lilla Erstagarden opened in 2010 and is located in Stockholm Sweden It is the first children s hospice in any of the Nordic countries 23 LauraLynn House opened in 2011 in Dublin Ireland It is the first children s hospice in the Republic of Ireland 24 Horizon House in Northern Ireland opened in Belfast October 2001 25 The first Hungarian Child Hospice in Pecs Hungary in 2011 Dori House 26 and the second in Torokbalint Hungary Tabitha House 27 Sterntalerhof opened in 1999 and is located in Loipersdorf Kitzladen Austria It is still the first and only children s hospice in Austria 28 Children s Hospice in Poland Foundation Podkarpatian Hospice for Children Founded in 2006 29 and Pomeranian Hospice for Children in Gdansk founded in 2008 30 The Ezgu Amal Charitable Foundation initiated Taksin Solace a children s hospice for palliative care in the Zangiata District of Tashkent 31 Opened on 25 August 2022 it is the first facility of its kind in Uzbekistan 32 See also EditChildren s palliative careReferences Edit Children s Charities Children Hospices Together for Short Lives www childhospice org uk Helen amp Douglas House the World s first children s hospice providing hospice care for children and young adults www helenanddouglas org uk Retrieved 19 March 2014 a b History Helen amp Douglas House Archived from the original on 2007 05 16 Retrieved 2007 07 08 McIver Brian 2016 03 21 Inspirational Scottish CHAS hospice Rachel House celebrates its 20th birthday www dailyrecord co uk Retrieved August 20 2017 Puckey Michele Bush Andrew 2011 Passage to Paradise Ethics and end of life decisions in children Paediatric Respiratory Reviews 12 2 139 143 doi 10 1016 j prrv 2010 10 003 PMID 21458743 Zaal Schuller I H De Vos M A Ewals F V P M Van Goudoever J B Willems D L 2016 End of life decision making for children with severe developmental disabilities The parental perspective Research in Developmental Disabilities 49 50 235 246 doi 10 1016 j ridd 2015 12 006 PMID 26741261 Secretary Thompson receives the Mattie Stepanek Champion Award from Children s Hospice International for his dedication to helping children in need PDF Children s Hospice International October 13 2005 Archived from the original PDF on September 28 2007 Retrieved 2007 07 08 Who We Are Children s Hospice International Archived from the original on 2007 07 24 Retrieved 2007 07 08 George Mark Children s House Ryan House Angel Unaware Pediatric Hospice Archived from the original on 2016 01 22 Retrieved 2016 04 27 About Us Angel Unaware Pediatric Hospice angelunaware wpengine com Archived from the original on 2016 01 30 Retrieved 2016 04 26 Sarah House Connor s House About Us 2012 10 17 Ladybug House Timeline Archived from the original on 2017 10 16 Retrieved 2017 10 16 Carter Brian Brockman Manuel Garrett Jeremy Knackstedt Angie Lantos John 2018 Why are there so Few Ethics Consults in the Children s Hospitals PDF HEC Forum 30 2 91 102 doi 10 1007 s10730 017 9339 y PMID 28975473 S2CID 207149577 Archived from the original PDF on July 14 2021 Retrieved 2019 04 18 Carter B Brockman M Garrett J Knackstedt A Lantos J 2018 History of Ethics Consultation HEC Forum 30 2 91 102 doi 10 1007 s10730 017 9339 y PMID 28975473 S2CID 207149577 Very Special Kids celebrates 30 years www vsk org au About Bear Cottage 2014 01 07 That house that Queensland built official opening of Hummingbird House via eHospice Home 14 September 2011 Our story Shooting Star Children s Hospices Retrieved 2023 05 09 Har far doende barn lindrande vard Dagen se Nyheter om kyrka och samhalle Archived from the original on 2011 07 16 Retrieved 2010 11 25 State s first hospice for children just a godsend The Irish Times Horizon House provides new focus for children s hospice care Northern Ireland News Archived from the original on 2013 10 02 Retrieved 2013 09 03 Szememfenye hu dori haz Archived from the original on 2013 09 17 Retrieved 2013 06 27 Tabitha Gyermekhospice hogy mindig legyen segitseg www tabitha hu About us Sterntalerhof www sterntalerhof at Fundacja Podkarpackie Hospicjum dla dzieci Komu przekazac 1 podatku www hospicjum podkarpackie pl Fundacja Pomorskie Hospicjum dla dzieci www pomorskiehd pl Uzbekistan s first children s hospice opens in Zangiota daryo uz en 2022 08 25 Retrieved 2023 02 21 Children s hospice was opened in Zangiata district of Tashkent region uzdaily com 28 August 2022 Retrieved 2023 02 21 Retrieved from https en wikipedia org w index php title Children 27s hospice amp oldid 1153975256, wikipedia, wiki, book, books, library,
