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Resources ● Aging with Dignity

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○ https://agingwithdignity.org ● American Academy of Hospice and Palliative Medicine ○ http://aahpm.org ● American Association of Colleges of Nursing End of Life Nursing Consortium ○ https://www.aacnnursing.org/ELNEC ● CaringInfo (National Hospice and Palliative Care Organization) ○ https://www.caringinfo.org ● Center to Advance Palliative Care ○ https://www.capc.org ● Centers for Medicare & Medicaid Services ○ https://www.cms.gov/Medicare/Medicare-Fee-for-Service- Payment/Hospice#:~:text=Hospice%20Levels%20 References Š Agency for Healthcare Research and Quality (AHRQ). (2019). CAHPS hospice survey. https:// www.ahrq.gov/cahps/surveys-guidance/hospice/index.html Š Alsarqri, S. H. (2017). Stressors and coping strategies of the Saudi nursing students in the clinical training: A cross-sectional study. Hindawi Education Research International. https:// doi.org/10.1155/2017/4018470 Š AMBOSS. (2021). Postmortem skin changes. https://www.amboss.com/us/knowledge/ Death/ Š American Academy of Professional Coders (AAPC). (2018). Hospice billing and reimbursement essentials. https://www.aapc.com/blog/44501-hospice-billing-and- reimbursement-essentials/ Š American Association of Colleges of Nursing. (2016). CARES: Competencies and recommendations for educating undergraduate nursing students. https://www.aacnnursing. org/Portals/42/ELNEC/PDF/New-Palliative-Care-Competencies.pdf Š American Association of Colleges of Nursing. (2021). End of life nursing education consortium. Š https://www.aacnnursing.org/ELNEC Š American College of Obstetricians and Gynecologists. (2019). Perinatal palliative care. ACOG Committee Opinion No. 786. Obstetrics and Gynecology, 134, 84-89. Š American Family Physician (AAFP). (2020). Advance directives and do-not-resuscitate orders. https://www.aafp.org/afp/2000/1001/p1683.html Š American Holistic Nurses Association. (2017). Holistic stress management for nurses. https:// www.ahna.org/Home/Resources/Stress-Management Š American Hospice Foundation. (n.d.-a; retrieved 4/17/23). Debunking the myths of hospice. https://americanhospice.org/learning-about-hospice/debunking-the-myths-of-hospice/ Š American Hospice Foundation. (n.d.-b; retrieved 4/17/23). How is hospice care paid for? https://americanhospice.org/learning-about-hospice/how-is-hospice-care-paid-for/ Š American Nurses Association and Hospice & Palliative Nurses Association. (2017). American Nurses Association & Hospice and Palliative Nurses Association call for palliative care in every setting. https://www.nursingworld.org/news/news-releases/2017-news-releases/ american-nurses-association-and-hospice--palliative-nurses-association-call-for-palliative- care-in-every-setting/ Š American Nurses Association and Hospice & Palliative Care Nursing Association. (2021). Palliative Nursing: Scope and Standards of Practice (6th ed.). American Nurses Association. Š American Sentinel University. (2017). Nurse wellness: Positive stress-management strategies [Blog post]. https://www.americansentinel.edu/blog/2017/07/10/nurse-wellness-the-ana- says-balance-your-life/ Š American Society of Clinical Oncology. (2017). Benefits and risks of opioids in cancer care [Blog post]. https://www.cancer.net/blog/2017-08/benefits-and-risks-opioids-cancer-care Š Anderson, M., & Sacred Dying Foundation. (2017). Sacred dying journal: Reflections on embracing the end of life. Paraclete Press. Š Aus Med. (2021). PQRST pain assessment. https://www.ausmed.com/cpd/explainers/pqrst- pain-assessment Š Bowman, T. (2016). Spirituality and countertransference: Individual and systemic considerations. Death Studies, 41(3), 54-161. 10.1080/07481187.2016.1236851 Š Braganza, M., Glossop, A., & Vora, V. (2017). Treatment withdrawal and end-of-life care in the intensive care unit. British Journal of Anesthesia Education, 17(12), 396-400. https://doi. org/10.1093/bjaed/mkx031 Š Brent, N. J. (2016). Pronouncing patient’s death should be timely, respectful [Blog post]. https://www.nurse.com/blog/2016/04/06/pronouncing-patients-death-should-be-timely- respectful/ Š Byock, I. (1996). The nature of suffering and the nature of opportunity at the end of life. Clinics in Geriatric Medicine, 12(2), 237-252. PMID: 8799345 Š Camacho-Ávila, M., Fernández-Sola, C., Jiménez-López, F. R., et al. (2019). Experience of parents who have suffered a perinatal death in two Spanish hospitals: A qualitative study. BMC Pregnancy Childbirth 19, 512. https://doi.org/10.1186/s12884-019-2666-z Š Capital Caring Health (CCH). (2021). Patient and family training guide. https://www. capitalcaring.org/wp-content/uploads/PatientFamily-Hospice-Care-Guide.pdf Š Caring Info. (2021). Types of grief and loss. https://www.caringinfo.org/planning/grief-and- loss/types-of-grief-and-loss/ Š Center to Advance Palliative Care (CAPC). (2021). What is pediatric palliative care? https:// getpalliativecare.org/whatis/%20pediatric/ Š Center to Advance Palliative Care (CAPC). (n.d.; retrieved 4/17/23). The case for palliative care. https://www.capc.org/the-case-for-palliative-care/ Š Centers for Disease Control and Prevention (CDC). (2021). National vital statistics reports: Final data from 2019. https://www.cdc.gov/nchs/data/nvsr/nvsr70/nvsr70-02-508. pdf#:~:text=The%20preterm%20birth%20rate%20rose%20for%20the%20fifth,rates%20 both%20declined%20in%202019%20compared%20with%202018. Š Centers for Medicare & Medicaid Services (CMS). (2020). State operations manual. https:// documentcloud.adobe.com/link/review?uri=urn:aaid:scds:US:7699ab3e-4560-4738-a308- f27dd910e15f Š Centers for Medicare & Medicaid Services (CMS). (2021a). Medicare benefit policy manual. https://www.cms.gov/Regulations-and-Guidance/Guidance/Manuals/Downloads/bp102c15. pdf Š Centers for Medicare & Medicaid Services (CMS). (2021b). HIS manual. https://www.cms. gov/files/document/his-manual-v300022321.pdf Š Children’s Project on Hospice and Palliative Care (ChiPPS). (2017). Lilliana’s story. Pediatric Palliative and Hospice Care. 49, 10. https://www.nhpco.org/wp-content/uploads/2019/04/ ChiPPS_e-journal_Issue-49.pdf Š Cicolello, K., & Anandarajah, G. (2019). Multiple stakeholders' perspectives regarding barriers to hospice enrollment in diverse patient populations: A qualitative study. Journal of Pain and Symptom Management, 57(5), 869-879. https://doi.org//10.1016/j. jpainsymman.2019.02.012. Š Coalition to Transform Advanced Care (C-TAC). (2017). Policy barriers to advanced illness care models. https://www.thectac.org/wp-content/uploads/2018/05/Policy-Barriers- Report-5.1.18.pdf Š Comfort Matters. (2021). About comfort matters. https://comfortmatters.org/about-us/ Š Connelly, M. (2020). Kubler Ross five stage model [Blog post]. https://www.change- management-coach.com/kubler-ross.html Š Coté, C. J., Lerman, J., & Anderson, B. J. (2018). A practice of anesthesia for infants and children (6th ed.). Elsevier.

● Dignity in Care

○ https://dignityincare.ca/en/ ● Hospice and Palliative Nurses Association ○ https://advancingexpertcare.org ● Hospice Foundation of America ○ https://hospicefoundation.org ● National Association for Home Care & Hospice ○ https://www.nahc.org ● National Hospice and Palliative Care Organization ○ https://www.nhpco.org

Š Cross, L. A. (2019). Compassion fatigue in palliative care nursing: A concept analysis. JHPN, 21(1), 21-28. https://doi.org/10.1097/NJH.0000000000000477 Š De Swardt, C., & Fouché, N. (2017). “What happens behind the curtains?” An exploration of ICU nurses’ experiences of postmortem care on patients who have died in intensive care. Intensive Critical Care Nursing, 43, 108-115. doi: 10.1016/j.iccn.2017.05.005 Š Doka, K. J. (1996). Coping with life-threatening illness: A task model. OMEGA: Journal of Death and Dying, 32(2), 111-122. doi: 10.2190/0WEH-QUBG-67VG-YKJK Š Efstathiou, N., & Ives, J. (2017). Compassionate care during withdrawal of treatment: A secondary analysis of ICU nurses’ experiences. Nursing Ethic,. 25(8), 1075-1086. https://doi. org/10.1177%2F0969733016687159 Š Elsevier Clinical Skills. (2020). Postmortem care. https://elsevier.health/en-US/preview/ postmortem-care Š Endsley, S., & Main, R. (2019). Palliative care in advanced dementia. American Family Physician, 99(7), 456-458. PMID: 30932458 Š Ernedoff, N. C., & Cox, C. E. (2017). Spirituality, palliative care, and the intensive care unit: A new approach. American Journal of Critical Care Medicine, 195(2), 150-152. https://doi. org/10.1164/rccm.201608-1598ED Š Fitch, M. I., & Bartlett, R. (2019). Patient perspectives about spirituality and spiritual care: Asia-Pacific. Journal of Oncology Nursing, 6(2), 111-121. https://doi.org/10.4103/apjon. apjon_62_18 Š Frankl, V. E. (1969). Man’s search for meaning: An introduction to logotherapy (rev. ed.). Washington Square Press. Š Glaser, B. G., & Strauss, A. L. (1968). Time For Dying. Aldine. Š Harle, L. (2017). Postmortem changes. https://www.pathologyoutlines.com/topic/ forensicspostmortem.html Š Hospice Foundation of America. (2018). Signs of approaching death. https:// hospicefoundation.org/Hospice-Care/Signs-of-Approaching-Death Š Jordan, T. R., Khubchandani, J., & Wiblishauser, M. (2016). The impact of perceived stress and coping adequacy on the health of nurses: A pilot investigation. Nursing Research and Practice, 1(11). https://doi.org/10.1155/2016/5843256 Š Kilcullen, M., & Ireland, S. (2017). Palliative care in the neonatal unit: Neonatal nursing staff perceptions of facilitators and barriers in a regional tertiary nursery. BMC Palliative Care, 16(32), 1-12. https://doi.org/10.1186/ s12904-017-0202-3. DOI: 10.1186/s12904-017-0202- 3 Š Kilcrease, J. W. (2021). Introduction to tasks of dying. https://kilcrease.com/index.php/ about-dying/stages-phases-tasks/tasks-of-dying/introduction-to-tasks-of-dying Š Kübler-Ross, E. (1969). On death and dying. Macmillan. Š Landers, S. (2017). Repeat after me: “Hospice means more care, not less” [Blog post]. https://www.huffingtonpost.com/steve-landers- mdmph/repeat-after-me-hospice-means- more-care-not- less_b_9176170.html Š Livestrong. (2020). Palliative care to improve quality of life. https://www.livestrong.org/ we-can-help/emotional-and-physical-effects-of-treatment/palliative-care-to-improve-quality- of-life Š Mayo Foundation for Medical Education and Research (MFMER). (2021). Hospice care: Comforting the terminally ill. https://www.mayoclinic.org/healthy-lifestyle/end-of-life/in- depth/hospice-care/art-20048050 Š McClement, S., & Thompson, G. (2018). The meaning of dignity in psychosocial care. In M. Lloyd-Williams (Ed.), Psychosocial issues of palliative care: A community-based approach for life limiting illness (3rd ed., pp. 136-148). Oxford University Press. Š Medicare Payment Advisory Commission (MedPAC). (2020). Report to the congress. https:// documentcloud.adobe.com/link/track?uri=urn:aaid:scds:US:b1dadd44-6d95-4fc3-85e7- 12ed1be75d9a Š Merkel S., Voepel-Lewis T., Shayevitz J., & Malviya S. (1997). The FLACC: a behavioral scale for scoring postoperative pain in young children. Pediatric Nursing, 23(3), 293-297. PMID: 9220806 Š Moazzami, K., Dolmatova, E., Maher, J., Solanki, P., Klapholz, M., & Waller, A. (2017). Trends in utilization of inpatient palliative care services and racial disparity of disposition to hospice care among patients with heart failure in the U.S. between 2003 and 2012. Journal of the American College of Cardiology, 69(11). doi: 10.1016/S0735-1097(17)34184-0 Š Moestrup, L., & Hvidt, N. C. (2016). Where is God in my dying? A qualitative investigation of faith reflections among hospice patients in a secularized society. Death Studies, 40(10), 618-629. doi: 10.1080/07481187.2016.1200160 Š National Coalition for Hospice and Palliative Care. (2017). Summary report: National Consensus Project Stakeholder Strategic Directions Summit. http://www. nationalcoalitionhpc.org/wp-content/uploads/2017/04/NationalCoalition1702_ SummitReportUpdated.pdf Š National Coalition for Hospice and Palliative Care. (2018). National Consensus Project for Quality Palliative Care: Clinical practice guidelines for quality palliative care (4th ed.). https://www.nationalcoalitionhpc.org/wp-content/uploads/2020/07/NCHPC- NCPGuidelines_4thED_web_FINAL.pdf Š National Conference of Commissioners on Uniform State Laws (NCCUSL). (1980). Uniform Determination of Death Act. https://www.uniformlaws.org/HigherLogic/System/ DownloadDocumentFile.ashx?DocumentFileKey=341343fa-1efe-706c-043a-9290fdcfd909 Š National Hospice and Palliative Care Organization (NHPCO). (2019a). General inpatient care: Fact sheet. https://www.nhpco.org/wp-content/uploads/2019/05/GIP_FAQs.pdf Š National Hospice and Palliative Care Organization (NHPCO). (2019b). Respite care: Tip sheet. https://www.nhpco.org/wp-content/uploads/2019/05/Respite_Tip_sheet.pdf Š National Hospice and Palliative Care Organization (NHPCO). (2020). Facts and figures. https://documentcloud.adobe.com/link/review?uri=urn:aaid:scds:US:05dac25d-fceb-40c8- be69-ebfa993af2b4 Š National Hospice and Palliative Care Organization (NHPCO). (2021). Common misperceptions about hospice. https://www.nhpco.org/resources/community-outreach- tools/community-outreach-tools-media-templates-tips-talking-points/attachment/common_ misconceptions_about_hospice/ Š National Institutes of Health, National Institute of Nursing Research. (2021). What is palliative care? https://www.ninr.nih.gov/newsandinformation/what-is-palliative-care Š National Institutes of Health, National Institute on Aging. (2017). What happens when someone dies? https://www.nia.nih.gov/health/what-happens-when-someone-dies Š National Palliative Care Registry. (2019). Latest trends and insights. https://media.capc.org/ recorded-webinars/slides/Final_Registry_Presentation_August_2019_6y0ElUf.pdf

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