1. 1. End Of Life Decisions Soumya Niranjan, BPharm., MS, CCRP Sociology of Death and Dying SOC 760
2. 2. Talking about death What are End of Life Decisions (ELD)? Dying in America Evidence supporting end of life discussions End of life is a public health issue Summary OVERVIEW
3. 3. Family is more aggressive than patient. Family estimate of patients preference is not improved by living will, but improved by talking with the physicians. Ditto PH, Danks JH, Smucker WD, et al. Advance directives as acts of communication: a randomized controlled trial. Arch Intern Med. 2001;161:42130. J Pain & Sympt Manag 2005;30:498-509. Talking about death-Family factors
4. 4. Physicians who are uncomfortable with death (physicians with increased death anxiety) tend : Treat more aggressively. Less tolerant of clinical uncertainty. Like elderly patients less. Merrill J, Lorimor R, Thornby J, et al. Caring for terminally ill persons: comparative analysis of attitudes (thanataphobia) of practising doctors, medical students and student nurses. Psychol Rep 1998;83:1238. Talking about death-Clinicians perspective
5. 5. The act of the physician (administering drugs, forgoing treatments) The intention of the physician concerning the life-shortening effect (explicitly/partly intended, only taken into account) The involvement of the patient (actively involved in the decision making process or not) V Provoost, L Deliens et al. Acta Paediatr 2004, 93:301-5 Definition of ELD
6. 6. How we die What we want Nearly half of all Americans die in a hospital What happens That number increases to 70% when nursing homes / long- term-care facilities are included Centers for Disease Control (2005)
7. 7. How we die (contd.) What we want 7 out of 10 Americans say they would prefer to die at home. Time/CNN Poll (2000) What happens Only 25 percent of Americans actually die at home. Centers for Disease Control (2005)
8. 8. How we die (contd.) What we want More than 80 percent of patients with chronic diseases say they want to avoid hospitalization and intensive care when they are dying. What happens Hospitalizations during the last six months of life are rising: from 1,302 hospital admissions per 1,000 Medicare recipients in 1996 to 1,442 in 2005 Dartmouth Atlas of Health Care (2005)
9. 9. Particularly relevant to the seriously ill and the elderly. When do ELDs matter the most?
10. 10. Discussions about EOL were NOT associated with feeling Depressed, sad, terrified, worried or meeting DSM criteria for mental disorder Patients who had discussions about EOL with physicians were More likely to: Accept diagnosis as terminal Prefer medical treatment focused on relieving pain / discomfort over life extending procedures Complete a DNR order Wright, Alexi A., et al. "Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment." Jama 300.14 (2008): 1665-1673. Does end of life discussions harm patients?
11. 11. In final week of life, QOL decreased with increasing number of aggressive interventions In final weeks of life, QOL increased with hospice care Wright, Alexi A., et al. "Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment." Jama 300.14 (2008): 1665-1673. What about Quality of Life (QOL)?
12. 12. No! If physicians discussed EOL options/the future with patients, bereaved families reported: Higher satisfaction with communication from physician Better understanding of what to expect as family member died Teno JM, Lynn J, Connors AF Jr et al. The illusion of end-of-life resource savings with advance directives. SUPPORT Investigators. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment. J AmGeriatr Soc 1997;45:513518. Does it harm families?
13. 13. High impact Major burden Potential for preventing suffering associated with illness Rao, Jaya K., Lynda A. Anderson, and Suzanne M. Smith. "End of life is a public health issue." American journal of preventive medicine 23.3 (2002): 215-220. End of Life is a public health issue
14. 14. There is no unanimity regarding the statistical threshold for a treatment to be considered futile. Medical futility has been conceptualized as a power struggle for decisional authority between physicians and patients/surrogates. This situation is not optimal for neither the patient nor the family---its best to not rely on this method Medical futility in end of life care
15. 15. End of life decision making should not be the result of semi- informed guesswork. We need to be able to create well-functioning health care delivery systems that make end of life care genuinely available. We deserve no less Summary
16. 16. Letting Go: What should medicine do when it cant save your life? - Atul Gawande The New Yorker, August 2, 2010 http://www.newyorker.com/reporting -An interesting read
17. 17. -An alternative point of view Its Not Just About Quality of Life-- Sandeep Jauhar http://www.nytimes.com/2015/05/03/opinion/sunday/sandeep- jauhar-its-not-just-about-quality-of-life.html