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Children's Hospice Article Draft

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Benefits and Burdens of Children's Hospice[1]

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  • Benefits Associated with Children's Hospice[2]
    • Gives opportunities through the research process to an individual who is nonjudgemental as well as an opportunity to convey their emotions.
    • Therapeutic benefit from knowing an institution and care cohort is there to provide support and comfort when necessary.
  • Burdens Associated with Children's Hospice[3]
    • Guardians prefer to not be away from the patient when possible.
    • Topics associated with hospice and care is considered "sad" for many.
    • Some guardians reported feelings of anxiety and distress associated with coming to terms with this topic and the patient having to go through a medical journey not expected of their age.

Services

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A typical children's hospice service offers ​a wide variety of services that aim to support both the patient and their families:

  • Specialist children's palliative care, respite care, emergency, and terminal care (this may be at the hospice or within the child's home)
  • Bereavement counseling 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
  • Psychological therapy
  • Music and play therapy
  • Activities for siblings
  • Social services support

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.

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. Multiple studies have shown that chronic pain has a prominent, negative impact on quality of life, affecting aspects of living such as mental health, sleep, and personal relationships.[4][5] Hospice care aims to provide comprehensive total pain assessment and treatment by addressing the social, emotional, physical, and spiritual aspects of pain.[6] The image in Norris, et al. displays examples in each of these areas and illustrates how a multimodal care team composed of social workers, psychologists, chaplains, and medical providers can work to address these sources of pain. Pain can be managed via pharmacologic and non-pharmacologic approaches, such as art and play therapy.

United States children's hospices

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Community Hospice & Palliative Care Logo with a Pediatric Care Program called Community PedsCare
See 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.[7] 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.[8]

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.[9]

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.[10]

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[11]
  • Ryan House, opened March 2010 in Arizona[12]
  • Angel Unaware,[13] opened in July 2015 in Fort Worth, Texas[14] 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[15]
  • Connor's House, in Philadelphia, Pennsylvania (Operational from 2007 to August 2016, defunct)[16]
  • 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.[17]
  • Edmarc Hospice for Children in Portsmouth, VA. Established in 1978
  • The Elizabeth's Hospice in Escondido, CA. Established in 1978
  • Agrace for Kids opened in 1978, serving Southern Wisconsin counties.

Other nations' children's hospices

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  • Lilla Erstagården opened in 2010, and is located in Stockholm, Sweden. It is the first children's hospice in any of the Nordic countries.[18]
  • LauraLynn House opened in 2011, in Dublin, Ireland. It is the first children's hospice in the Republic of Ireland.[19]
  • Horizon House in Northern Ireland, opened in Belfast October 2001.[20]
  • The first Hungarian Child Hospice in Pécs, Hungary in 2011 Dóri House,[21] and the second in Törökbálint, Hungary Tábitha House.[22]
  • Sterntalerhof opened in 1999 and is located in Loipersdorf-Kitzladen, Austria. It is still the first and only children's hospice in Austria.[23]
  • Children's Hospice in Poland. Foundation Podkarpatian Hospice for Children. Founded in 2006[24] and Pomeranian Hospice for Children in Gdańsk founded in 2008.[25]
  • Malawi: Umodzi - is part of the Queen Elizabeth Central Hospital- founded in 2001 in Blantyre, Malawi
  • Indonesia: Yayasan Rumah Rachel (Rachel House)- located in Jakarta, Indonesia. It provides home- based care.
  • Belarus: Belarusian Children's Hospice (BCH) - founded in 1944 in Minsk, Belarus

References

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  1. ^ Weaver, Meaghann S.; Mooney-Doyle, Kim; Kelly, Katherine Patterson; Montgomery, Kathleen; Newman, Amy R.; Fortney, Christine A.; Bell, Cynthia J.; Spruit, Jessica L.; Kurtz Uveges, Melissa; Wiener, Lori; Schmidt, Cynthia M.; Madrigal, Vanessa N.; Hinds, Pamela S. (2019-08). "The Benefits and Burdens of Pediatric Palliative Care and End-of-Life Research: A Systematic Review". Journal of Palliative Medicine. 22 (8): 915–926. doi:10.1089/jpm.2018.0483. ISSN 1557-7740. PMC 6755658. PMID 30835596. {{cite journal}}: Check date values in: |date= (help)
  2. ^ Weaver, Meaghann S.; Mooney-Doyle, Kim; Kelly, Katherine Patterson; Montgomery, Kathleen; Newman, Amy R.; Fortney, Christine A.; Bell, Cynthia J.; Spruit, Jessica L.; Kurtz Uveges, Melissa; Wiener, Lori; Schmidt, Cynthia M.; Madrigal, Vanessa N.; Hinds, Pamela S. (2019-08). "The Benefits and Burdens of Pediatric Palliative Care and End-of-Life Research: A Systematic Review". Journal of Palliative Medicine. 22 (8): 915–926. doi:10.1089/jpm.2018.0483. ISSN 1557-7740. PMC 6755658. PMID 30835596. {{cite journal}}: Check date values in: |date= (help)
  3. ^ Weaver, Meaghann S.; Mooney-Doyle, Kim; Kelly, Katherine Patterson; Montgomery, Kathleen; Newman, Amy R.; Fortney, Christine A.; Bell, Cynthia J.; Spruit, Jessica L.; Kurtz Uveges, Melissa; Wiener, Lori; Schmidt, Cynthia M.; Madrigal, Vanessa N.; Hinds, Pamela S. (2019-08). "The Benefits and Burdens of Pediatric Palliative Care and End-of-Life Research: A Systematic Review". Journal of Palliative Medicine. 22 (8): 915–926. doi:10.1089/jpm.2018.0483. ISSN 1557-7740. PMC 6755658. PMID 30835596. {{cite journal}}: Check date values in: |date= (help)
  4. ^ Hadi, Muhammad Abdul; McHugh, Gretl A.; Closs, S. José (2019-06). "Impact of Chronic Pain on Patients' Quality of Life: A Comparative Mixed-Methods Study". Journal of Patient Experience. 6 (2): 133–141. doi:10.1177/2374373518786013. ISSN 2374-3735. PMC 6558939. PMID 31218259. {{cite journal}}: Check date values in: |date= (help)
  5. ^ McCarberg, Bill H; Nicholson, Bruce D; Todd, Knox H; Palmer, Trish; Penles, Leslie (2008-07). "The Impact of Pain on Quality of Life and the Unmet Needs of Pain Management: Results From Pain Sufferers and Physicians Participating in an Internet Survey". American Journal of Therapeutics. 15 (4): 312–320. doi:10.1097/mjt.0b013e31818164f2. ISSN 1075-2765. {{cite journal}}: Check date values in: |date= (help)
  6. ^ "Pediatric Palliative Care". Primary Care: Clinics in Office Practice. 46 (3): 461–473. 2019-09-01. doi:10.1016/j.pop.2019.05.010. ISSN 0095-4543.
  7. ^ 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.
  8. ^ 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.
  9. ^ "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.
  10. ^ "Who We Are". Children's Hospice International. Archived from the original on 2007-07-24. Retrieved 2007-07-08.
  11. ^ "George Mark Children's House".
  12. ^ "Ryan House".
  13. ^ "Angel Unaware Pediatric Hospice". Archived from the original on 2016-01-22. Retrieved 2016-04-27.
  14. ^ "About Us – Angel Unaware Pediatric Hospice". angelunaware.wpengine.com. Archived from the original on 2016-01-30. Retrieved 2016-04-26.
  15. ^ "Sarah House".
  16. ^ "Connor's House - About Us". 2012-10-17.
  17. ^ "Ladybug House Timeline". Archived from the original on 2017-10-16. Retrieved 2017-10-16.
  18. ^ "Här får döende barn lindrande vård « Dagen.se - Nyheter om kyrka och samhälle". Archived from the original on 2011-07-16. Retrieved 2010-11-25.
  19. ^ "State's first hospice for children 'just a godsend'". The Irish Times.
  20. ^ "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.
  21. ^ "Szememfenye.hu - dóri ház". Archived from the original on 2013-09-17. Retrieved 2013-06-27.
  22. ^ "Tábitha - Gyermekhospice – hogy mindig legyen segítség". www.tabitha.hu.
  23. ^ "About us - Sterntalerhof". www.sterntalerhof.at.
  24. ^ "Fundacja Podkarpackie Hospicjum dla dzieci - Komu przekazać 1% podatku?". www.hospicjum-podkarpackie.pl.
  25. ^ "Fundacja Pomorskie Hospicjum dla dzieci". www.pomorskiehd.pl.
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