This article celebrates the 50th anniversary of hospice care in America. It also offers a brief recounting of one person’s reflections on some aspects of the history, achievements, and current status of American hospice care.
American Academy of Pediatrics, Section on Hospice and Palliative Medicine and Committee on Hospital Care. (2013). Pediatric palliative care and hospice care: Commitments, guidelines and recommendations. Pediatrics, 132(5), 966–972. https://doi.org/10.1542/peds.2013-2731
2.
BoydenJ. Y.ErsekM.DeatrickJ. A.WidgerK.LaRagioneG.LordB.FeudtnerC. (2021). What do parents value regarding pediatric palliative and hospice care in the home setting?Journal of Pain and Symptom Management, 61(1), 12–23. https://doi.org/10.1016/j.jpainsymman.2020.07.024
3.
BrueraE.HigginsonI.von GuntenC. F.MoritaT. (Eds.), (2021). Textbook of palliative medicine and supportive care (3rd ed.). CRC Press/Taylor & Francis.
4.
ByockI. (2014). The four things that matter most: A book about living (10th anniversary ed.). Atria.
5.
CagleJ. G.Van DussenD. J.CullerK. L.CarrionI.HongS.GuralnikJ.ZimmermanS. (2016). Knowledge about hospice: Exploring misconceptions, attitudes, and preferences for care. The American Journal of Hospice & Palliative Care, 33(1), 27–33. https://doi.org/10.1177/1049909114546885
6.
CarlsonM.HerrinJ.DuQ.EpsteinA. J.BarryC. L.MorrisonR. S.BackA. L.BradleyE. H. (2010). Impact of hospice disenrollment on health care use and Medicare expenditures for patients with cancer. Journal of Clinical Oncology: Official Journal of the American Society of Clinical Oncology, 28(28), 4371–4375. https://doi.org/10.1200/JCO.2009.26.1818
7.
CheathamC. (2015). Hospice whispers: Stories of life. SCIE Publishing.
8.
ChernyN.FallonM. T.KaasaS.PortenoyR. K.CurrowD. C. (Eds.), (2021). Oxford textbook of palliative medicine (6th ed.). Oxford University Press.
9.
CoraceB. (2001). End-of-life care: A personal reflection. In SolomonM. Z.RomerA. L.HellerK. S.WeissmanD. E. (Eds.), Innovations in end-of-life care: Practical strategies and international perspectives (vol. 2, pp. 81–82). Mary Ann Liebert Publishers.
10.
CorrC. A.CorrD. M.DokaK. J. (2019). Death & dying, life & living (8th ed.9th ed.). Cengage. to be published in 2024.
11.
CravenJ.WaldF. S. (1975). Hospice care for dying patients. American Journal of Nursing, 75(10), 1816–1822. https://doi.org/10.2307/3423575
12.
DaviesB.SehringS. A.PartridgeJ. C.CooperB. A.HughesA.PhilpJ. C.Amidi-NouriA.KramerR. F. (2008). Barriers to palliative care for children: Perceptions of pediatric health care providers. Pediatrics, 121(2), 282–288. https://doi.org/10.1542/peds.2006-3153
GansD.HadlerM. W.ChenX.WuS. H.DimandR.AbramsonJ. M.DiamantA. L.KominskiG. F. (2015). Impact of a pediatric palliative care program on the caregiver experience. Journal of Hospice and Palliative Nursing, 17(6), 559–565. https://doi.org/10.1097/NJH.0000000000000203
KuebelbeckA. (2023). Perinatal palliative care: Past, present, and future. In Pediatric e-Journal (#70, pp. 19–22). National Hospice and Palliative Care Organization.
21.
KuebelbeckA.DavisD. L. (2023). A gift of time: Continuing your pregnancy when your baby’s life is expected to be brief (2nd ed.). Johns Hopkins University Press.
22.
LackS. A.BuckinghamR. W. (1978). First American hospice: Three years of home care. Hospice.
23.
LiegnerL. M. (1975). St. Christopher’s Hospice, 1974: Care of the dying patient. JAMA, the Journal of the American Medical Association, 234(10), 1047–1048. https://doi.org/10.1001/jama.1975.03260230047022
24.
LimboR.WoolC.CarterB. (Eds.), (2020). Handbook of perinatal and neonatal palliative care: A guide for nurses, physicians, and other health professionals. Springer.
25.
LyckholmL.NortonK.DowningJ. (2021). End of life: Care of the dying. In Servaty-SeibH. L.ChappleH. S. (Eds.), Handbook of thanatology: The essential body of knowledge for the study of death, dying, and bereavement (3rd ed., pp. 151–180). Association for Death Education and Counseling.
National Hospice and Palliative Care Organization (NHPCO) (2015). NHPCO facts and figures: Pediatric palliative and hospice care in America. NHPCO.
29.
National Hospice and Palliative Care Organization (NHPCO). (2022, Dec). Hospice facts and figures: 2022 edition. NHPCO. https://www.nhpco.org/factsfigures
30.
NORC at the University of Chicago (Originally, National Opinion Research Center) (2023). Value of hospice in Medicare. NORC at the University of Chicago.
31.
RhodesR. L.TenoJ. M.ConnorS. R. (2007). African American bereaved family members’ perceptions of the quality of hospice care: Lessened disparities, but opportunities to improve remain. Journal of Pain and Symptom Management, 34(5), 472–479. http://dx.doi.org/10.1016/j.jpainsymman.2007.06.004
32.
RichardsonA. (2007). Life in a hospice: Reflections on caring for the dying. Radcliffe Publishing.
33.
SaundersC. M. (1976). The challenge of terminal care. In SymingtonT.CarterR. L. (Eds.), Scientific foundations of oncology (pp. 673–679). William Heinemann.
34.
StoddardS. (1992). The hospice movement: A better way of caring for the dying (rev ed.). Vintage.
35.
Tataj-PuzynaU.WęgrzynowskaM.RyśM.SysD.BączekG.BaranowskaB. (2023). “This pregnancy makes sense”: Experiences of women who have decided to continue pregnancy after lethal fetal diagnosis. Death Studies, 47(2), 149–158. https://doi.org/10.1080/07481187.2022.2038310
36.
TenoJ. M.ClarridgeB. R.CaseyV.WelchL. C.WetleT.ShieldR.MorV. (2004). Family perspectives on end-of-life care at the last place of care. Journal of the American Medical Association, 291(1), 88–93. https://doi.org/10.1001/jama.291.1.88
37.
TibbettsE. (2001). Learning to value every moment. In SolomonM. Z.RomerA. L.HellerK. S.WeissmanD. E. (Eds.), Innovations in end-of-life care: Practical strategies and international perspectives. (vol. 2, pp. 78–79). Mary Ann Liebert Publishers.
38.
WareB. (2015). The top five regrets of the dying: A life transformed by the dearly departing (rev ed.). Hay House.
39.
WehrJ. (2015). Peaceful passages: A hospice nurse’s stories of dying well. Quest Books.
40.
WoolC.LimboR.Denney-KoelschE. M. (2018). “I Would Do it All over Again”: Cherishing time and the absence of regret in continuing a pregnancy after a life-limiting diagnosis. The Journal of Clinical Ethics, 29(3), 227–236. https://doi.org/10.1086/JCE2018293227
41.
WyattK. M. (2012). What really matters: 7 lessons for living from the stories of the dying. Sunroom Studios.