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2026 Convention Workbook 202 THEOLOGICAL DOCUMENTS —COMMISSION ON THEOLOGY AND CHURCH RELATIONS MEDICAL/hyphen.capETHICAL CONSIDERATIONS 29 7. “Vegetable” vs. “Persistent Vegetative State” Lay use of the term “vegetable” for a person in a coma or a vegetative state represents a horrible misinterpretation of the meaning of the medical term “persistent vegetative state” (PVS). While the word may be acceptable within the scope of its clinical use, the casual use of it may mislead people greatly. /T_he term “coma” refers to the lack of both awareness and wake- fulness, whether in an open-eyed or closed-eyed coma state. Patients in a vegetative state may have regained consciousness from a coma, but still have not regained awareness. PVS represents a disorder of consciousness in which patients with severe brain damage are in a state of partial arousal rather than true awareness. Typically the classi/f_ication of “vegetative state” (VS) gets applied to such persons in the /f_irst weeks with the classi/f_ication “persistent vegetative state” coming a/f_ter four weeks. While some commonly describe those in a persistent vegetative state as brain dead, that misunderstands the injury. Patients with PVS have a healthy and functioning lower brain stem. Although very rare, PVS patients may sometimes regain full consciousness. One man, Conley Holbrook, was classi- /f_ied as “comatose” for eight years. On Feb. 25, 1991, he awakened. According to Bartlett and Rehder, 26-year-old Holbrook was not only able to call each of his relatives by name, but he was even able to identify the small children who had been born while he was unconscious. 140 Another person, Patti White Bull, emerged from her unconscious state on Christmas Eve in 1999 a/f_ter 16 years.141 8. What Do/Did They Want? vs. What Is Best for Them? As Christians, the question “What did he/she want?” should not be primary in our thinking. A better question for Christian surrogates at the bedside of a dying loved one should be, “What is best for this person?” 142 H. Hospice Care Hospice care, in-patient or at home, can become a valuable partner to both the family and the dying person. Unlike health restorative therapies and procedures common in hospitals, hospice aims at palliative relief of pain and symptoms of a ter- minally ill patient. 143 Hospice programs also incorporate attending to the emotional and spiritual needs of the patient. Note that the spiritual support provided by a secular organization that conceives of the idea of “spiritual” in the most generic and ecumenical way will be something quite different from pastoral care offered by a Lutheran clergyman.144 Lutheran pastors will want to provide Word and Sacrament ministry to a terminally ill person on a regular basis. /T_hey will typically want to prepare the dying saint and his or her family for impending death with the use of the “Commendation of the Dying, ” found in the Pastoral Care Companion. 145 Because of the focus on palliation of a terminally ill patient’s pain and symptoms, the priority falls on comfort and quality of life through the reduction of pain and suffering. Hospice provides an alternative to therapies aimed at prolong- ing life through means of therapies and procedures. Current treatments for cancer, for instance, carry with them potential unwanted side effects and additional symptoms that may prove extremely burdensome to an elderly patient. Outside the 140 Bartlett and Rehder, “Ventilators, Feeding Tubes, and Other End-of-Life Questions, ” 5. Conley Holbrook identi/f_ied his cousin as his attacker following awakening from his semi-comatose state, resulting in the man facing trial for attempted murder. “Brain-Damaged Man’s ‘Miracle’ Recovery Lands a Cousin in Jail: Tragedy: /T_he Two Boyhood Chums Grew up to Be Drinking Buddies. A Head Injury Le/f_t One of /T_hem Speechless for Eight Y ears. Was It Assault or Just Another Family Fight?” Los Angeles Times, April 21, 1991, latimes.com/archives/la-xpm-1991-04-21- mn-846-story.html. 141 “ Awakening from 16 Y ears in near-Coma. ” Los Angeles Times, Feb. 3, 2000, latimes.com/archives/la-xpm-2000-feb-03-me-60571-story.html. 142 /T_his point is discussed in more detail under the section on advance directives, particularly as related to the durable power for health care proxy (see pages 17–21). 143 /T_he very notion of hospice care stands against the ideology of suicide and euthanasia. As Dyck notes, “Hospice was founded to provide comfort-only care that would help prevent suicide and euthanasia. Hospice physicians repeatedly report that once they provide comfort-only care, patients who expressed a desire to end their lives, or have it ended, change their minds, or no longer pursue ending their lives as an option, ” Life’s Worth: /T_he Case Against Assisted Suicide (Grand Rapids: Eerdmans, 2002), 47. 144 Hospice organizations may assume that they will be responsible for the spiritual care of the dying person. It may be necessary for the family to request that their pastor rather than the hospice chaplain provide spiritual care and counsel for the dying. 145 “Commendation of the Dying, ” in Lutheran Service Book: Pastoral Prayer Companion (St. Louis: Concordia Publishing House, 2007), 81–94. MEDICAL/hyphen.capETHICAL CONSIDERATIONS 30 United States, the term “hospice” o/f_ten denotes facilities and institutions. Usage in the United States applies to both in-pa- tient and out-patient (home-based) programs that began to spring up and proliferate in the early 1970s. In 2017, almost 1.5 million patients took part in hospice in the United States. At present, the United States Medicare program only covers hospice care if the hospice provider is Medicare- approved. One can determine if the hospice provider quali/f_ies as Medicare-approved by inquiring with your physician, the hospice provider, the state hospice organization or the state health department. 146 If the hospice has been Medicare- approved, “once your hospice bene/f_it starts, Original Medicare will cover everything you need related to your terminal illness. ” 147 Current law permits two 90-day bene/f_it periods, followed by an unlimited number of 60-day bene/f_it periods. /T_his includes the right to change hospice providers once during each bene/f_it period. Depending on the speci/f_ic needs of the terminally ill person, the number and quality of hospice programs in the area, and one’s own ability to assist in the care of the dying loved one, a person may prefer to opt for receiving hospice in a nursing home or long-term care facility where hospice services are added onto the regular nursing, housekeeping and dietary services. Most people profess to prefer dying in “my own bed” rather than in a hospital, nursing home or other institutional setting. However, if the spouse may be too frail or impaired to assist the hospice team actively, an in-home program may not be practical. At times, the decision whether or not to use home-based hospice will hinge on the avail- ability of family members (and/or hired help) to support the terminally ill person. A frail, elderly spouse suffering from early stages of dementia, for instance, would not be a suitable person to attend to an obese patient with uncontrolled incontinence. Increasingly, patients are encouraged to become intelligent consumers of their usage of medical science and its myriad bene/f_its. In the area of hospice, differences of practical pain and symptom management exist. For instance, some hospices may not perform glucose monitoring for diabetics as they see it as “treatment toward a cure, ” even though not monitoring glucose could cause hypoglycemia (critically low levels where a patient goes into coma and death) or hyperglycemia (crit- ically high levels). Both are considered clinical emergencies. Other hospices recognize glucose monitoring is not curative, but that it prevents harm in maintaining acceptable levels and waiting for death from another condition (e.g., cancer, heart failure). Asking questions of the staff before entering into an agreement may assist patients and their families in making a wise selection. And while the Medicare website declares that “Original Medicare will cover everything you need related to your terminal illness, ” that should not be understood to mean that nothing is expected of the family. Different hospice providers carry out their duties in myriad ways, some handling most of the care needs, others expecting family members or the hospital or senior facility to shoulder some of the responsibilities. Again, asking enough questions in advance and probing to ensure a full understanding of how a particular organization operates will increase the likelihood of having a satisfying relationship with their services and support in a time of need. Note that a person is not obligated to accept the leads and recommendations from hospital discharge planners. While they may be invaluable in a search for a provider, their information should not substitute for one’s own efforts to secure the hospice that will meet the family’s expectations. 146 Because Medicare Advantage programs must offer the same bene/f_its as traditional Medicare, one may also take advantage of hospice through a Medicare Advantage program. However, the list of providers will be limited to those approved by the Advantage program. “How Hospice Works, ” Medicare, medicare.gov/what-medicare-covers/what-part-a-covers/how-hospice-works. 147 Coverage may not be as complete as some expect. For more information about what Medicare considers “everything you need related to your terminal illness, ” see “How Hospice Works, ” above. MEDICAL/hyphen.capETHICAL CONSIDERATIONS 31 Medicare suggests that the following questions may aid families in the selection of a hospice provider: • Is the hospice provider certi/f_ied and licensed by the state or federal government? • Does the hospice provider train caregivers to care for you at home? • How will your doctor work with the doctor from the hospice provider? • How many other patients are assigned to each member of the hospice care staff? • Will the hospice staff meet regularly with you and your family to discuss care? • How does the hospice staff respond to a/f_ter-hour emergencies? • What measures are in place to ensure hospice care quality? • What services do hospice volunteers offer? Are they trained?148 148 “How Hospice Works, ” medicare.gov/what-medicare-covers/what-part-a-covers/how-hospice-works. PASTORAL AND SPIRITUAL DIMENSIONS 32 IV . Pastoral and Spiritual Dimensions A. Dealing with Our Uncertainty and Sinfulness /T_he discussion of end-of-life decision-making must also take account of the ambiguity inherent in all human experience. As fallible creatures with circumscribed consciousness, we must admit that we may not always know clearly what the “right thing to do” might be in a particular situation. More than one disciple of Christ has felt the force of St. Paul’s phrase “we see in a mirror dimly” ( 1 COR. 13:12) when confronted with the uncertainties attending to bedside decision-making for a dying loved one. A/f_ter opining that the unbroken tradition from “Genesis to Heidegger” differentiates animal life from human life by the presence of “human consciousness of self, ” /T_hielicke admits that there are no casuistic rules to offer us infallible direction on how to handle the bedside choices families and physicians must render. He resorts to the notion that “one must simply run the risk of making the decision — and be prepared in so doing to err, and thereby to incur guilt. As a Christian, I would say that whoever hopes to come through it all without illusions or repressions will have to live in the name of forgiveness. ” 149 /T_he 1993 document of the CTCR reminded us that “any decisions made in this highly complex area, and any actions taken that may later appear to have been wrong, have been redeemed by that forgiveness which is available to all who put their trust in the work and merits of mankind’s Savior and Redeemer. ” 150 To sinners burdened in conscience by the guilt of the Law, our /f_inal word must always be one of Gospel and forgiving grace in Jesus Christ. Whether hindsight reveals the inadequacy of our calculations here or not, we dare not stop with the penultimate word of Law but press on to the ultimate word of Gospel. As Luther wisely observed, “ Are we to rate the price of his blood so low as to say that it has redeemed only what is lowest in man, and that what is most excellent in man can take care of itself and has no need of Christ? 151 At one level, such counsel should reassure those who confess that all human efforts carry the taint of sin and that motives can never be 100% pure. We all live by faith and in light of the forgiveness of God, a/f_ter all. For faithful loved ones carrying a burden of guilt over the death of a loved one and torturing themselves over whether they could have “done more” or done it differently, this message may be an important part of sensitive pastoral care. One can hardly gainsay the liberating promise of divine forgiveness and the blessed state of absolution. However, we are never permitted to substitute divine pardon for legitimate human agency. We dare not adopt a cavalier attitude that it does not really matter what we decide to do since we know that God will forgive us in the end anyway. Neither are families exempt from the difficult prayerful conversations that attend to living in Christ through faith as we serve our neighbor through love. 152 149 /T_hielicke, /T_he Doctor as Judge, 21. See the entire section, 16–21, for his argument. 150 CTCR, Christian Care at Life’s End, 21. 151 LW 33:227. 152 In Luther’s “/T_he Freedom of the Christian, ” he writes: “We conclude, therefore, that a Christian lives not in himself, but in Christ and in his neighbor. Otherwise he is not a Christian. He lives in Christ through faith, in his neighbor through love, ” LW 31:371.