An Exploration of the Bioethical Dilemmas Associated with the Costs of End-of-Life Care Aaron Held University of Montana Abstract Background: Medical Care for patients nearing the end of their lives is an extremely complicated bioethical topic. From determining what is futile care, to finding a clear and concise definition of patient death, the field of bioethics explores a huge variety of issues regarding end-of-life (EOL) care. Cost is a major issue that is discussed with reservation in bioethical literature. Purpose: This project explores the bioethical dilemmas associated specifically with the costs of EOL care. Methods: Database wide searches in Pubmed, EconLit, JSTOR, and Web of Science using the search words “End-of-Life care costs” yielded data regarding the costs of EOL care for patients, their families, and society. Special considerations such as pediatric EOL care and physician assisted suicide were explored using the data bases listed above as well as the current data reports from Oregon’s Death with Dignity Act. Searches in Philosopher’s Index, and PhilPapers using the search term “End-of-Life care” provided the bioethical framework of the project. Conclusions drawn from the economic review were integrated into the bioethical framework, yielding novel bioethical considerations for EOL care. Findings: Multiple studies have found that close to 30% of Medicare’s annual spending (approximately $60 billion) is spent on the 6% of patients who die that year. Of that $60 billion, about one third is utilized in the last 30 days of life. However, even considering Medicare and private insurance coverage, patient out-of-pocket costs in the last 5 years of life averaged about $39,000 and exceeded total household assets 25% of the time. This disproportionate spending elicits major bioethical concerns of futility, autonomy, and justice. Significance: This research represents one of the first bioethical analyses of EOL care focusing explicitly on cost implications. It conceivably serves as a starting point for the considerate inclusion of financial discussions in EOL decision making. Special Considerations Pediatric Palliative Care: Medical costs decrease by an average of $3,331/month Total number of hospital stays and average length of stay are also drastically reduced Savings are highest for patients at the higher end of the cost spectrum Physician Assisted Suicide/Aid in Dying No specific studies addressing how this affects Medicare or patient spending Medications used can range from $400-$25,000 Potential for these prices to rise dramatically Many who receive prescriptions for these medications never take them Costs of End-of-Life Care 16% of Medicare budget (~$32 billion) is spent on patients in the final 60 days of life In 1990 27.9% of Medicare spending went to the 5.9% of patients who died within that year 1/3 of a person’s medical expenses come in the last 30 days of life Patient out-of-pocket costs Average costs in final 5 years of life: $38,688 for individuals, $51,030 for couples Expenditures exceeded baseline total household assets 25% of the time Spending in the last 5 yrs of life ranged from $31,069 for gastrointestinal disease to $66,155 for Alzheimer's disease Bioethical Considerations Definition of futility: Can it be defined in a universal way? Are futility case judgements valid and/or cost efficient? Autonomy Should the patient get to decide what end-of-life care they want regardless of cost? At what point are cost saving measures infringing on patient autonomy? Justice Should this much money be spent on these patients when some lack any form of healthcare? Allocation of medical funding and resources Effects of patient’s family Duty to die? Futility Autonomy Justice Effects on End-of-Life Care Costs Advanced directives: Only 5-15% of the population has an advanced directive Palliative Care: Total medical costs actually increase Average costs per day decrease by $117 Hospice: Mixed results Savings seem to depend on diagnosis Citations Campbell, D. E. (2004). Medicare Program Expenditures Associated with Hospice Use. Annals of Internal Medicine,140(4), 269. doi:10.7326/0003-4819-140-4-200402170-00009 Coppa, S. (1996). Futile Care: Confronting the High Costs of Dying. The Journal of Nursing Administration,26(12), 18-23. doi:10.1097/00005110-199612000-00007 Death with Dignity Act. (2017, February 10). Retrieved from https://public.health.oregon.gov/ProviderPartnerResources/EvaluationResearch/DeathwithDignityAct/Pages/index.aspx FAQs. (n.d.). Retrieved from https://www.deathwithdignity.org/faqs/ Greer, J. A., Tramontano, A. C., Mcmahon, P. M., Pirl, W. F., Jackson, V. A., El-Jawahri, A., . . . Temel, J. S. (2016). Cost Analysis of a Randomized Trial of Early Palliative Care in Patients with Metastatic Nonsmall-Cell Lung Cancer. Journal of Palliative Medicine,19(8), 842-848. doi:10.1089/jpm.2015.0476 Kelley, A. S., Mcgarry, K., Fahle, S., Marshall, S. M., Du, Q., & Skinner, J. S. (2012). Out-of-Pocket Spending in the Last Five Years of Life. Journal of General Internal Medicine,28(2), 304-309. doi:10.1007/s11606-012-2199-x Martin, H. B., & Sas, D. F. (2015). Autonomy vs. Selflessness at the End of Life. Ethics & Medicine,32(2), 109-123. Schneiderman, L. J. (2011). Defining Medical Futility and Improving Medical Care. Journal of Bioethical Inquiry,8(2), 123-131. doi:10.1007/s11673-011-9293-3 Steinbock, B., Arras, J. D., & London, A. J. (n.d.). Moral Reasoning in the Medical Context. Yang, Y. T., & Mahon, M. M. (2011). Palliative care for the terminally ill in America: the consideration of QALYs, costs, and ethical issues. Medicine, Health Care and Philosophy,15(4), 411-416. doi:10.1007/s11019-011-9364-6 Introduction Medical care at the end of life is a topic that has been thoroughly explored in bioethical literature. The field is defined by its exploration of numerous issues Definition of death Medical futility Advanced directives/living wills Proxy decision making Physician assisted suicide/aid in dying Patient autonomy and the patient physician relationship Cost is a major concern that is rarely considered in discussions about EOL care, despite its blatant importance to patients, their families, and society.