Photo by Chen Mizrach on Unsplash.
Together with the gift of life, I have received its finiteness, its perishability. As death is inescapable, when might I allow my life to end? Certainly, my life expectancy has to be longer than average, and I demand good physical and mental health right down to the last minute. Furthermore, my life must end without fear, without pain, without solitude, and without existential trials and tribulations. But how shall I recognize the last phase of my life if conditions of health and daily life are still favorable?
“Die at the right time!” Thus teaches Zarathustra regarding death as a consummation to life and the date be eligible for choice.1 The hypothesis of a freely chosen end-of life decision when the time has come is an essential cornerstone of modern palliative care, a hype prevailing more than ever. However, a free choice depends on many conditions, including unimpaired consciousness and unimpeded decision-making. While dying is an important phase of elapsing life, death has the dimensions of inconceivability and immenseness. Death is radical and irreversible and by far exceeds the mere decomposition of a body. Denial is a common attitude towards death. Unfortunately, blocking the certainty of death from the conscious mind may reinforce an unpleasant experience that frightens and alienates the bereaved.
Simone de Beauvoir wrote a scholarly piece about old age in different cultures and centuries.2 In her conclusion, she regarded old age as a travesty of life. This pessimistic point of view matches the image of “the sick man seen as parasite of society, vegetating, in cowardly dependence on physicians and machines.”1 Whereas in the consciousness of meritocracy old age and disease have no meaning unless someone makes money with them, in the consciousness of spirituality, old age, disease, and end of life are meaningful. Regardless of health status and socioeconomic and cultural background, old age and the end of life are seen as important phases in the life of every human being.
Ambivalence and euphemism are common when talking about the end of life. They are integral parts of terms such as “best supportive care” and “comfort therapy.” The “good death,” from εὖ θάνατος, euthanatos, in the word euthanasia, should no longer be used because of its former association with severe abuse of patients and health services in Europe eighty years ago. From a historical point of view, “legally correct” does not always mean “ethically correct.” Unfortunately, the elimination of the word euthanasia from everyday language, although “politically correct,” does not eliminate the underlying ideology. It may simply attach more importance to the envelope than to the letter.
The legislative framework has changed in the last decades. Older adults’ decision-making regarding care at the end of life is frequently delegated to others in the belief that the delegate would make appropriate decisions on their behalf. This offers some degree of control without being in control of decisions.3 Understanding patient preferences for end-of-life care is integral to caring for older adults when others take over responsibility based on “best interests” decision-making.4 We must accept that patients differ in their perceptions of benefits and burdens and that we never can ensure that all decisions have been carefully considered. Although most people want to be at home when their life comes to an end, most people die in hospitals or nursing homes.5 Hopefully the provision of nationwide palliative care and mobile hospices can help more people remain in their familiar environment when their time comes.
Historically, the institutional influence on decision making transitioned from spiritual advisers to health care professionals. Physicians who are certified in care of the elderly have a strong and often decisive influence when it comes to end-of-life decision making.6 Unfortunately, this frequently goes along with medicalization of the end of life and causes more and more people to become patients shortly before they pay their debt to nature.7 On the one hand, physicians play an essential role in clarifying the goals of medical treatment, defining the care plan, initiating discussions about life-sustaining therapy, educating patients and families, helping them deliberate, making recommendations, and implementing the treatment plan.8 On the other hand, physicians, owing in part to their own discomfort with death and dying, tend to avoid end-of-life discussions in the non-acute setting.9
There are countless options at the beginning of a life and just a handful of options when life comes to an end. However, medical treatment requires a patient’s consent. As long as someone can make his own decisions, he can refuse medical treatment. A person with capacity has the right to refuse any medical treatment. This includes the right to say in advance that he wants to refuse treatment in case of lost capacity in the future. Ideally, legally binding advance directives should be without barriers or the need for monetary compensation and not characterized by bureaucracy.10
Whether I can accept the last phase of my life without medical action depends not only on my wishes, but also on the legitimacy of my wishes and on society’s prevailing ethical values. It further depends on my prevailing state of health and my certified decision-making ability. Based on personal experience and knowledge of healthcare personnel, it also depends on the user-dependent estimate of the feasibility of medical intervention, as well as the varying assessment from a medical point of view. Finally, it also depends on the prevailing financial resources of the social and health systems, the expectations of family members and various relatives, and coincidental boundary conditions. I fear my ability to make my own decisions at the end of my life would seem to be an illusion.
- Dunea, G. “Friedrich Nietzsche—much afflicted philosopher.” Hektoen International 2020. http://hekint.org/2020/08/11/friedrich-nietzsche-much-afflicted-philosopher/.
- de Beauvoir, S. La Vieillesse, Paris, Éditions Gallimard, 1970 (ISBN 2070268020).
- Romo RD, Allison TA, Smith AK, Wallhagen MI. “Sense of Control in End-of-Life Decision-Making.” Journal of American Geriatric Society 65(3) (2017) e70-e75. doi: 10.1111/jgs.14711.
- Taylor HJ. “What are ‘best interests’? A critical evaluation of ‘best interests’ decision-making in clinical practice.” Med Law Rev 2016;24(2):176-205. https://doi: 10.1093/medlaw/fww007.
- Austrian Bioethics Commission. “Dying with dignity. Recommendations on assistance and care for persons in end-of-life situations and related issues.” 2020. https://bka.gv.at/DocView.axd?CobId=58509.
- Helton MR, Cohen LW, Zimmerman S, van der Steen JT. “The importance of physician presence in nursing homes for residents with dementia and pneumonia.” J Am Med Dir Assoc 2011;12(1):68-73. doi: 10.1016/j.jamda.2010.01.005.
- Lederer W. “Allowing Death – The Institutionalized End of Life.” Austin Palliat Care 2016;1(2):1007.
- Manalo MF. “End-of-Life Decisions about Withholding or Withdrawing Therapy: Medical, Ethical, and Religio-Cultural Considerations.” Palliat Care. 2013;7:1-5. doi: 10.4137/PCRT.S10796.
- Blackhall LJ. “Must we always use CPR?” N Engl J Med 1987;317(20):1281-5. doi: 10.1056/NEJM198711123172009.
- Spranzi M, Fournier V. “The near-failure of advance directives: why they should not be abandoned altogether, but their role radically reconsidered.” Med Health Care Philos 2016;19(4):563-568. doi: 10.1007/s11019-016-9704-7.
WOLFGANG LEDERER, MD, DTM&H, CTCM&H, completed medical school at the University of Innsbruck, DTM&H and MSc(CTM) Mahidol University; since 1996: Specialist in Tropical Medicine and Hygiene; since 2002: Specialist in Anaesthesiology and Critical Care Medicine, Module coordinator medical training in Emergency Medicine; since 2008: Associate Professor in Anaesthesiology and Critical Care, Innsbruck Medical University. He is married with 5 children.