End of Life Decisions 101
Dennis M. Sullivan, MD, MA (Ethics)
The care of patients near the end of life can be ethically challenging. Physicians and other health care professionals may find certain concepts vague and hard to understand. Furthermore, there must be a balance between two extremes: a treat-at-all-costs vitalism on the one hand, and a too-rapid withdrawal of potentially beneficial treatments on the other. The purpose of this article is to provide some conceptual clarity.1
A terminal condition is a disease or disease process that will result eventually in a patient’s death, no matter what treatment is given. Of course, this may include cases where death is inevitable but far off, as in patients with cancer who live for years with their disease. On the other hand, the expression imminent death is used when death is expected within a short time, usually days or weeks.2
The word euthanasia comes from two Greek words: eu for “good,” and thanatos for “death.” Thus the term means a “good” or “gentle” death.3 Active euthanasia is the overt, deliberate killing of a patient, e.g., by injecting an overdose of morphine or by giving potassium chloride to stop the heart. Passive euthanasia refers to the withdrawing or withholding of treatment, while the disease process takes its course to cause death.4 In other words, the distinction is between killing and letting die, but the intent in both is the patient”s death.
Most would condemn active killing. “Letting die” may seem to be more acceptable, though it can be just as unethical as active killing. Some ethicists would thereby argue that there is no morally relevant distinction between active and passive euthanasia.5 However, this oversimplifies the reality of medical care. “Letting die” may be morally justifiable in medicine if a particular intervention is truly futile, or if a patient or her authorized surrogate refuses it.3 Thus, the medical cause of death does have moral relevance, though not in and of itself. For these reasons, the term passive euthanasia has only added confusion to the ethical debate, and should be discarded.
Another way to look at euthanasia involves three categories: voluntary, nonvoluntary, and involuntary. Voluntary euthanasia is the act of bringing about a competent patient”s death at his request. Nonvoluntary euthanasia means ending the life of an incompetent patient, usually at the request of a family member, as in the Karen Quinlan case. In 1975, the New Jersey Supreme Court granted Miss Quinlan”s father the right to authorize removal of the respirator from his comatose daughter.6 Involuntary euthanasia means taking the life of an competent patient who does not wish to die.7 A moment”s reflection will demonstrate that these are not morally helpful distinctions. As mentioned earlier, the active taking of a patient”s life is usually considered wrong, even if a patient requests it. The focus here is on the agent who gives consent, rather than on the ethical merits of the act of killing or letting die. Physician-assisted suicide is a variation of voluntary active euthanasia, where the agent who causes the death is the patient herself, with means provided by the physician.
Finally, the omission v. commission argument is frequently cited in making a distinction between withholding treatment, i.e., not starting it, versus withdrawing treatment, i.e., stopping an intervention already begun. Historically, the latter has always been more difficult in medicine than the former, though this is probably more psychological than real. Bioethicists Beauchamp and Childress call the distinction “both irrelevant and dangerous.”7
Another aspect of end of life decisions involves terms relating to neurological functioning. The Terri Schiavo case fostered a great deal of discussion around the diagnosis persistent vegetative state (PVS). PVS is a state of severe brain injury, characterized by wakefulness (i.e., the presence of sleep-wake cycles), but no awareness of oneself or the external environment. This is due to severe damage to the cerebral cortex, with preservation of the brainstem. Patients in PVS have their eyes open, and may make non-purposeful movements. The presence of “sustained visual pursuit” (the ability to track movement) or “visual fixation” (the ability to sustain gaze upon an object) should cast doubt on the diagnosis of PVS.8,9
The minimally conscious state (MCS) is a closely related diagnosis, but differs from PVS in that MCS applies to patients who are awake and show minimal signs of responsiveness. There is greater activity of the cerebral cortex in MCS patients, and this may be dependent on the “emotional relevance” of the external stimulus.10 Both PVS and MCS are clinical diagnoses; in other words, such determinations are made at the bedside from careful examinations repeated on several occasions.
Finally, there is the state of brain death, or more accurately, death by neurological criteria. Brain death is not as controversial as PVS and MCS, and is well accepted by most physicians. According to this definition, death has occurred after massive neurological injury to both the cerebral cortex and the brain stem. Clinically, this means that no reflexes are present, there is no spontaneous breathing (the patient is ventilator dependent), and an electroencephalogram is isoelectric or “flat,” after two readings taken 24 hours apart.11 Under these circumstances, it may be ethically appropriate to discontinue life support or consider organ donation.
A full discussion of the ethical issues raised here goes beyond the scope of this article. Hopefully, these definitions will serve as a starting point.
1. Portions of this article were excerpted from: Sullivan D. “Euthanasia versus letting die: Christian decision-making in terminal patients.” Ethics and Medicine. 2005;21(2):109-18.
2. Kilner JF. Life on the Line. Bannockburn, IL: Center For Bioethics and Human Dignity; 1992.
3. Feinberg JS, Feinberg PD. Ethics For a Brave New World. Wheaton: Crossway Books; 1993.
4. Kilner JF. “Foregoing Treatment.” In: Kilner JF, Miller AB, Pellegrino ED (eds). Dignity and Dying: A Christian Appraisal. Grand Rapids: William B. Eerdmans, 1996:69-83.
5. Rachels J. “Active and Passive Euthanasia.” In: Beauchamp T, Perlin S (eds). Ethical Issues in Death and Dying. Englewood Cliffs, NJ: Prentice-Hall, 1978.
6. Healthcare Ethics www.ascensionhealth.org/ethics/public/cases//case21.asp. Accessed October 3, 2006. Ascension Health, 2003.
7. Beauchamp TL, Childress JF. Principles of Biomedical Ethics. Fifth ed. New York: Oxford University Press, 2001:121.
8. “Medical Aspects of the Persistent Vegetative State (Part I).” New England Journal of Medicine. 1994 May 26, 1994;330(21):1499-508.
9. “Medical Aspects of the Persistent Vegetative State (Part II).” New England Journal of Medicine. 1994 June 2, 1994;330(22):1572-9.
10. Laureys S, Perrin F, Schnakers C, Boly M, Majerus S. “Residual Cognitive Function in Comatose, Vegetative, and Minimally Conscious States.” Current Opinion in Neurology. 2005 December, 2005;18(6):726-33.
11. Sullivan J, Seem D, Chabalewski F. “Determining Brain Death.” Critical Care Nurse. 1999;19:48-52.