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How do i treat when there is no treatment
| Content Provider | Semantic Scholar |
|---|---|
| Author | Regier, Debra S. Andrew, Erin Bloom, Miriam Fisher, Deborah A. |
| Copyright Year | 2019 |
| Abstract | The majority of children in hospice care do not have cancer, but many have rare diseases. Thus, it is essential 6 that rare disease specialists have a functioning knowledge of the palliative care system and its role in meeting the unique 7 needs of pediatric patients with genetic disorders or inborn errors of metabolism. Creating a team of providers that both 8 understands the natural history of the specific rare disease and truly understands the principles of palliative care leads to 9 optimal outcomes for patients. Here, we discuss the importance of genetic counseling and describe the basic tenants of 10 palliative care. By approaching this topic from a rare disease perspective, we discuss the unique features of improving quality 11 of life for patients and families. In addition, we discuss the role of self-care in preventing care provider burnout of families 12 and medical providers. The thoughtful approach to palliation in rare diseases is essential to optimize the experience for all 13 participants in a patient's shortened life. 14 It is from knowledge tempered with humility that I know I will simultaneously be right and wrong 14 in my impressions, yet I share my experiences sitting in the sacred place of telling a family we know 15 why their child is suffering from disease, but have no way to stop it. This paper is dedicated to the 16 families that I have learned from–those that have been honest and courageous enough to tell me what 17 I did right (and more importantly wrong!). Those families who took the initiative to ask me when I 18 didn't know how to tell them the end was near. I do not live in this sacred space alone. Instead, I am 19 surrounded by an amazing community that finds a way to treat when there is no treatment. Our goal in 20 this manuscript is to equip care providers so that they can sit with families at funerals with no regrets. 21 |
| Starting Page | 1 |
| Ending Page | 7 |
| Page Count | 7 |
| File Format | PDF HTM / HTML |
| DOI | 10.3233/trd-190043 |
| Alternate Webpage(s) | https://content.iospress.com/download/translational-science-of-rare-diseases/trd190043?id=translational-science-of-rare-diseases/trd190043 |
| Language | English |
| Access Restriction | Open |
| Content Type | Text |
| Resource Type | Article |
