I have a hunch that this chapter will be very unlike other chapters in this book. I have been a nurse for over 13 years. Seven of those years have been spent in critical care. I work in a neurovascular intensive care unit (ICU) in a major university hospital. Many times patients come to us in an obtunded state and never become fully awake during their stay. Other times their admission uncovers a life-threatening or a life-changing diagnosis and quality-of-life and end-of-life questions are staring them in the face. I have seen in my recent experience greater use of palliative care services utilizing a multidisciplinary approach with clearly defined goals and priorities. I have learned a lot from being a participant in these end-of-life discussions. They provide a forum for families to gain information and communicate their worst fears, their best hopes, and their wishes for their loved ones. However, the greatest lessons that I have learned about death have come from my patients.
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I consider an intervention inappropriate when, quantitatively, it has a minute likelihood of success, that is, it probably will not postpone death for more than a few days, or when, qualitatively, it is outside the standard of practice, although the two are not equivalent. See, Robert D. Orr and Leigh B. Genesen, “Requests for ‘inappropriate’ treatment based on religious beliefs.” Journal of Medical Ethics 1997;23:142. The determination that the known risks of the burdens of an intervention outweigh the potential benefits is an ethical one, but such a determination would necessarily mean that the intervention in question is inappropriate.
From an ethical standpoint, there is no difference between withdrawing and withholding life-sustaining interventions. However, for some families, there is a greater psychological resistance to withdrawing as opposed to withholding interventions.
Ann Alpers and Bernard Lo, “Avoiding family feuds: responding to surrogate demands for life-sustaining interventions.” 27 J.L. Med & Ethics 74 (Spring 1999). Instances of substituted judgment will be excluded, where the patient’s views are known and faithfully reported to his physician. Note that it is an open question whether the substituted judgment standard differs substantially from the best interests standard in actual practice.
I believe that waking a patient so that the family can say goodbye is inappropriate because it violates the consent requirement and the principle of beneficence, inter alia. See, Anna Batchelor, Leslie Jenal, Farhad Kapadia, Stephen Streat, Leslie Whetsine, and Brian Woodcock, “Ethics roundtable debate: should a sedated dying patient be wakened to say goodbye to family?” Critical Care 2003, 7. This article is available online at http://ccforum.com/inpress/cc2329.
This is one reason why family presence at a resuscitation attempt can decrease anxiety and worry that “everything” has not been done.
Harold G. Koenig, Michael E. McCullough, and David B. Larson, Handbook of religion and health. Oxford: Oxford University Press; 2001:74.
Ideally, nurses who have developed a relationship with the family should be present, and monitors should be turned off.
This was the case with Terry Schiavo.
I strongly disagree with the contrary position taken by Robert D. Orr and Leigh B. Genesen in “Requests for ‘inappropriate’ treatment based on religious beliefs.”
Alpers and Lo.
For a discussion of the redemptive nature of suffering, see, United States Conference of Catholic Bishops, Ethical and religious directives for catholic health care services. 4th ed. Washington, DC: National Conference of Catholic Bishops; 2001:§ 5. The directives are online at http://www.usccb.org/bishops/directives.shtml.
Pius XII, Address to an International Group of Physicians (February 24, 1957); Sacred Congregation for the Doctrine of the Faith, Declaration On Euthanasia (May 5, 1980), § IV; John Paul II, Encyclical Letter Evangelium Vitae (March 25, 1995), § 65 (“To forego extraordinary or disproportionate means is not the equivalent of suicide or euthanasia; it rather expresses acceptance of the human condition in the face of death”).
James F Buryska, “Assessing the ethical weight of cultural, religious and spiritual claims in the clinical context.” Journal of Medical Ethics 2001;27:118.
It is often helpful to use the New Testament for Christians. See, for example, Luke 13:1, John 9.
See, David M. Smolin, “Praying For Baby Rena: religious liberty, medical futility, and miracles.” 25 Seton Hall L. Rev. 960 (1995).
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(2008). Comments from Ancillary Healthcare Providers. In: Crippen, D.W. (eds) End-of-Life Communication in the ICU. Springer, New York, NY. https://doi.org/10.1007/978-0-387-72966-4_12
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