Living-Will: The Ultimate Right over One’s Life
DOI:
https://doi.org/10.51333/njpsw.2021.v22.i2.280Abstract
Living-will is a written statement depicting individuals’ directions regarding future medical treatment in situations in which they are no longer able to express informed consent. Based on the secondary literature and substantiated with empirical findings, it carves out the need for death preparedness in general and endorsing living-will in particular. The paper covers the prevailing legislations and legal measures permitting passive euthanasia in different countries including India. It further entails all the essential requisites for writing a ‘living-will’ incorporating all the procedures and steps needed to be followed. The authors have tried to pinpoint the challenges encountered with their use briefly with special reference to India and have tried to add some valid suggestions. Lastly, to make it more user friendly, a suggestive format of writing a ‘living-will’ has also been provided.
Keywords: Advance directive, living-will, euthanasia, persistent vegetative state, patients’ rights
References
Age, U. K. (2020). Advance decisions, advance statements and living-wills: Factsheet 72. Retrieved on July 7, 2020, from https://www.ageuk.org.uk/globalassets/age-uk/ documents/factsheets/fs72_advance_decisionsadvance_statements_and_living_wills_fcs.pdf
American Academy of Neurology. (1995). Practice parameters: assessment and management of patients in the persistent vegetative state (summary statement). Neurology, 45(5), 1015–18.
Bernabei, R., Gambassi, G., Lapane, K., Landi, F., Gatsonis, C., Dunlop, R., & SAGE Study Group. (1998). Management of pain in elderly patients with cancer. Journal of American Medical Association, 279 (23), 1877-1882.
Bravo, G., Dubois, M.F., & Paquet, M. (2003). Advance directives for health care and research: prevalence and correlates. Alzheimer Disease & Associated Disorders, 17(4), 215-222.
Brown, B. A. (2003). The history of advance directives. A literature review. Journal of Gerontological Nursing, 29 (9), 4-14.
Chacko, R., Anand, J. R., Rajan, A., John, S., & Jeyaseelan, V. (2014). End-of-life care perspectives of patients and health professionals in an Indian healthcare setting. International Journal of Palliative Nursing, 20 (11), 557–64. https://doi.org/ 10.12968/ijpn.2014.20.11.557.
Cherniack, E. P. (2002). Increasing use of DNR orders in the elderly worldwide: whose choice is it? Journal of Medical Ethics, 28 (5), 303-307. Retrieved on July 3, 2020, from: http://jme.bmj.com/content/33/5/261.full
Childress, J. F. (1989). Dying Patients: Who's in Control? Journal of Law Medicine & Ethics, 17 (3), 227-231. https://doi.org/10.1111/j.1748-720X.1989.tb01099.x
Court Ruling, Aruna Shanbaug vs. Union of India, (2011, March 7). In the Supreme Court of India [cited 2016 Mar 13]. Available from: http://indiankanoon.org/doc/235821/
Covinsky, K. E., Goldman L, Cook EF, Oye R, Desbiens N, Reding D, Fulkerson W, Connors AF Jr, Lynn J., & Phillips RS. (1994). The impact of serious illness on patients’ families. Journal of American Medical Association, 272 (23), 1839–44.
Pinna, M. Á. C., Rubio, M., Trota, R. A., Gil, J. R., & Sancho, M. G. (2016). Qualitative research about euthanasia concept, between Spanish doctors. Revista de Calidad Asistencial 31 (1):18–26. https://doi.org/10.1016/j.cali.2015.07.002. Spanish.
DeLegge, R. L., & DeLegge, M. H. (2005). Percutaneous endoscopic gastrostomy evaluation of device materials: are we "failsafe"? Nutrition in Clinical Practice, 20 (6), 613-617.
Doorenbos, A.Z., & Nies, M.A. (2003). The use of advance directives in a population of Asian Indian Hindus. Journal of Transultural Nursing, 14 (1), 17–24.
Eiser, A.R., & Weiss, M.D. (2011). The underachieving advance directive: recommendations for increasing advance directive completion. American Journal of Bioethics. 1(4), W10.
Emanuel, L. L., & Emanuel, E. J. (1989). The Medical Directive. A new comprehensive advance care document. Journal of American Medical Association, 261 (22), 3288-3293.
Emanuel, L. L., Alpert, H. R., Baldwin, D. C., & Emanuel, E. J. (2000). What terminally ill patients care about: toward a validated construct of patients' perspectives. Journal of Palliative Medicine, 3 (4), 419-431.
Fagerlin, A., & Schneider, C.E. Enough. (2004). The failure of the living will. Hastings Centre Report, 34 (2), 30-42.
Fagerlin, A., Ditto, P.H., Danks, J.H., Houts, R.M., & Smucker, W.D. (2011). Projection in surrogate decisions about life-sustaining medical treatments. Health Psychology, 20(3), 166-175.
Fried, L. P., & Guralnik, J. M. (1997). Disability in older adults: evidence regarding significance, etiology, and risk. Journal of American Geriatric Society, 45 (1), 92-100.
Fried, T. R., & Mor, V. (1997). Frailty and hospitalization of long-term stay nursing home residents. Journal of American Geriatric Society, 45 (3), 265-269.
Fried, T.R., van Doorn, C., O'Leary, J.R., Tinetti, M.E., & Drickamer, M.A. (1999). Older persons' preferences for site of terminal care. Annals of Internal Medicine, 131(2), 109-112.
Garas, N., Pantilat S. (2001). Advance Planning for End-of-Life Care. Making Health Care Safer: A Critical Analysis of Patient Safety Practices. Rockville, MD: Agency for Healthcare Research and Quality (AHRQ); Evidence Report/Technology Assessment, Number 43: AHRQ Publication No. 01-E058.
Ghooi, R.B., Dhru, K. & Jaywant, S. (2016). The urgent need for advance directives in India. Indian Journal of Medical Ethics, 1(4), 242-9.
Gill, C. J., & Voss, L. A. (2005). Views of disabled people regarding legalized assisted suicide before and after a balanced informational presentation. Journal of disability policy studies, 16 (1), 6-15.
Hawkins, N. A., Ditto, P. H., Danks, J. H., & Smucker, W. D. (2005). Micromanaging death: process preferences, values, and goals in end-of-life medical decision making. Gerontologist, 45 (1), 107-117.
Health Law Institute (1995). End of Life Law & Policy in Canada. Dalhousie University. Retrieved on July 15, 2020 from http://eol.law.dal.ca/?page_id=231
Heffner, J.E., & Barbieri, C. (2001). Effects of advance care education in cardiovascular rehabilitation programs: a prospective randomized study. Journal of Cardiopulmonary Rehabilitation, 21(6), 387-391.
Hickman, S. E., Hammes, B.J., Moss, A.H., & Tolle, S.W. (2005). Hope for the future: achieving the original intent of advance directives. Hastings Centre Report, 35(6), S26-S30. India Today (2020, April 2). 90-year-old woman dies of coronavirus after refusing to use ventilator: Save it for younger patients. Retrieved on July 21, 2020 from https://www.indiatoday.in/trending-news/story/90-year-old-woman-dies-of-coronavirus-after-refusing-to-use-ventilator-save-it-for-younger-patients-1662470-2020-04-02
Jezewski, M. A., & Meeker, M. A. (2005). Constituting advance directives from the perspective of people with chronic illnesses. Journal of Hospice Palliative Nursing, 7(6), 319-327.
Kagawa-Singer, M., & Blackhall, L. J. (2001). Negotiating cross-cultural issues at the end of life: "You got to go where he lives". Journal of American Medical Association, 286 (23), 2993-3001.
Kastenbaum, R. (ed.) (2003) Encyclopedia of Death & Dying. USA: Macmillan Reference.
Kaushik, A. (2014). Ageing Issues: Intervention Strategies. In book (Eds.) Tattwam Paltasingh & Renu Tyagi. Emerging Issues in Gerontology, New Delhi: Bookwell publications.
Kinlaw, K. (2005). Ethical issues in palliative care. Seminars in Oncology Nursing, 21(1), 63-68.
Kish, S.K., Martin, C.G., & Price, K.J. (2000). Advance directives in critically ill cancer patients. Critical Care Nursing Clinics of North America. 12 (3):373-383.
Knauft, E., Nielsen, E.L., Engelberg, R.A., Patrick, D.L., Curtis, J.R. (2005). Barriers and facilitators to end-of-life care communication for patients with COPD. Chest Journal, 127 (6), 2188-2196.
Kong, B.H., An, H.J., Kim, H.S., Ha, S.Y., Kim, I.K., Lee, J.E., Park, Y.J., Kang, Y.J., Kim, Y.R., & Kim, H.K. (2015) Experience of advance directives in a hospice center. Journal of Korean Medical Science, 30(2), 151–4. https://doi.org/10.3346/jkms.2015.30.2.151.
Law Commission of India. Report No 241. Passive euthanasia – a relook. Aug 2012 Retrieved on: Sep 10, 2016 from: http://lawcommissionofindia.nic.in/ reports/report241.pdf
Leonard Davis Institute of Health Economics (July 28, 2017). The Challenges of Completing an Advance Directive. Retrieved on June 28, 2020 from https://ldi.upenn.edu/sumr-blog/challenges-completing-advance-directive
Links to State-Specific Advance Directive Forms, 2014 [cited 2016 Mar 13]. Available from: http://www.americanbar.org/content/dam/aba/administrative/law_aging/Links_to_State_Advance_Directive_Forms.authcheckdam.pdf
Lorenz, K.A., Lynn, J., Morton, S.C., et al. (2005). Methodological approaches for a systematic review of end-of-life care. Journal of Palliative Medicine. 8. (Supl.1), S4-11.
Lynn, J., Teno, J. M., Phillips, R. S., Wu, A. W., Desbiens, N., Harrold, J., ... & Connors Jr, A. F. (1997). Perceptions by family members of the dying experience of older and seriously ill patients. Annals of internal medicine, 126(2), 97-106.
Mayo Clinic (n.d.). Living Wills & Advance Directives for medical decisions. Retrieved from July 23, 2020 from https://www.mayoclinic.org/healthy-lifestyle/consumer-health/in-depth/living-wills/art-20046303
Ngo, L., Kelly, M., Coutlee, C.G., Carter, R. M., Sinnott-Armstrong, W., & Huettel, S. A. (2015) Two distinct moral mechanisms for ascribing and denying intentionality. Scientific Report: Nature. 4(5), 173-90. https://doi.org/10.1038/srep17390.
NSW government (2019) Making an Advance Care Directive. Retrieved on June, 20, 2020 from: https://www.service.nsw.gov.au/transaction/make-advance-care-directive-living-will#:~:text=An%20Advance%20Care%20Directive%2C%20is,unable%20to%20make%20decisions%20yourself.
Pfeifer, M. P., Mitchell, C. K., & Chamberlain, L. (2003). The value of disease severity in predicting patient readiness to address end-of-life issues. Archives of Internal Medicine, 163 (5), 609-612.
Population Reference Bureau & the World Fact-book (Central Intelligence Agency) (2011). World Birth and Death Rates: Ecology Global Network. Retrieved on November 15, 2019, from: http://www.ecology.com/birth-death-rates/
Quill, T. E. (2000). Perspectives on care at the close of life. Initiating end-of-life discussions with seriously ill patients: addressing the "elephant in the room". Journal of American Medical Association, 284 (19), 2502-2507.
Radbruch, L., Leget, C., Bahr, P., Müller-Busch, C., Ellershaw, J., de Conno, F., & Vanden Berghe, P. (2016). Board members of the EAPC. Euthanasia and physician-assisted suicide: a white paper from the European Association for Palliative Care. Palliative Medicine, 30 (2), 104–16. https://doi.org/10.1177/0269216315616524
Robijn, L., Chambaere, K., Raus, K., Rietjens, J., & Deliens, L. (2015). Reasons for continuous sedation until death in cancer patients: a qualitative interview study. European Journal of Cancer Care (English). Oct. 29. https://doi.org/10.1111/ecc.12405.
Savitha, S. & Kiran K. (2013). Health seeking behaviour in Karnataka: does micro-health insurance matter? Indian Journal of Community Medicine, 38 (4), 217–22. https://doi.org/10.4103/0970-0218.120156.
Seymour, J., Gott, M., Bellamy, G., Ahmedzai, S. H., & Clark, D. (2004). Planning for the end of life: the views of older people about advance care statements. Social Science & Medicine, 59 (1), 57-68.
Shrank, W. H., Kutner, J. S., Richardson, T., Mularski, R. A., Fischer, S., Kagawa-Singer, M. (2005). Focus group findings about the influence of culture on communication preferences in end-of-life care. Journal of General Internal Medicine. 20 (8):703-709.
Shukla, R. (2016). Passive euthanasia in India: a critique. Indian Journal of Medical Ethics, 13(1), 35–38.
Steinhauser, K. E., Christakis, N.A., Clipp, E.C., McNeilly, M., McIntyre, L., & Tulsky, J.A. (2000). Factors considered important at the end of life by patients, family, physicians, and other care providers. Journal of American Medical Association. 284(19), 2476-2482.
Teno, J.M. (2000). Advance directives for nursing home residents: achieving compassionate, competent, cost-effective care. Journal of American Medical Association, 283(11), 1481-1482.
Teno, J. M., Clarridge, B. R., Casey, V., Welch, L. C., Wetle, T., Shield, R., & Mor, V. (2004). Family perspectives on end-of-life care at the last place of care. Journal of American Medical Association, 291(1), 88-93.
Thakur, J., Prinja, S., Garg, C. C., Mendis, S., Menabde, N. (2011). Social and economic implications of non-communicable diseases in India. Indian Journal of Community Medicine, 36 (Suppl 1):S13–22. https://doi.org/10.4103/0970-0218.94704.
Times of India (June 13, 2018). Health spending pushed 55 million Indians into poverty in a year: Study. Retrieved on July 15, 2020 from: https://timesofindia.indiatimes.com/india/ health-spending-pushed-55-million-indians-into-poverty-in-a-yearstudy/articleshow/ 64564548.cms
US Government Accountability Office. (1995). Patient Self-determination Act: Providers offer information on Advance Directives but effectiveness Uncertain. HEHS-95-135. Retrieved on July 18, 2020 from: https://www.gao.gov/products/HEHS-95-135.
Wenger, N. S., Phillips, R. S., & Teno, J. M. (2000). Physician-patient communication in Support. Journal of American Geriatric Society, 48 (Suppl. 5), S52-60.
Wilkes, J.L. (1996, August 20). Nursing home nightmares. USA Today. P.7 A4.
Williams, G. (2020). Questions to ask before writing a living-will. Retrieved on June, 20, 2020 https://money.usnews.com/money/personal-finance/family-finance/articles/ questions -to-ask-before-writing-a-living-will
World Health Organization. (2018). Global Health Observatory Data- 2016. Retrieved on July 25, 2020 from: https://www.who.int/gho/ncd/mortality_morbidity/en/
Downloads
Published
How to Cite
Issue
Section
License
Copyright (c) 2021 National Journal of Professional Social Work
This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.