Section D: Special Concerns or Circumstances in End-of-Life Planning
This section of "Living Faithfully in End of Life Decisions" caused me at times to say an enthusiastic, "Yes!" and at other times to be disturbed, discomforted, but only rarely to desire an addition or change to the text. Here the sticky wickets of end of life conversations abide—the things we ought, but rarely do, talk through in our communities of faith.End-of-Life Planning and Care for Chronically or Severely Disabled Persons
As a pro-life Presbyterian I found much to cheer here as the consideration of pastoral care of those "who are chronically ill or severely disabled" and those with "intellectual and developmental disabilities (IDD)." Far from being "less valuable that the lives of persons without evident disabilities" those who live with these challenges have much to teach us about the "interdependence of Christian community." When it comes to medical interventions, the decision "should have nothing to do with the assessment by outside observers of the value or worth of the person's life." Pastors play an important role in helping healthcare professionals see beyond "consequentialist" thinking (risk, benefit, and burden) to "making and keeping human life human" a quote from Paul Lehmann.The writers point out that pastors should know that the "life expectancy of persons with IDD has increased" making end of life issues more similar for all persons. Patients with IDD have the same rights to "make end-of-life choices and have those choices respected." They are a part of the church community. Pastors can facility the task of "shared decision making" between patients, parents, and caregivers always remembering that "a disability does not devalue the worth of a person's life." Advance directives (a prominent theme in this paper) are important for those whose bodies are more vulnerable and "who wish their lives to be prolonged by any beneficial means possible."
End-of-Life Decisions for Terminally ill or Severely Impaired Children and Pregnant Women
By now, I should not be surprised that the PCUSA does not value children in the womb—but I still found myself disappointed at the shift the paper takes in this section when it comes to pregnant women. First, though, the paper deals with the "wrenching loss" of children who die from terminal illness and their care at the end of life. The reader is reminded that God is present in our suffering and indeed placed his own Son on a cross for a terrible death. Still it is heart wrenching for parents and friends to bear the suffering and death of a child. Authors suggest a number of ways Pastors can help:
• Preserving the rituals of the church (prayer & communion) and even including those in advance planning.
Words have meaning and two words dominate the paragraph dealing with dying pregnant women in this paper. One is spoken: 'circumstances' and one is unspoken: 'choice'. Those are the same two words that dominate the PCUSA policy statements on abortion. In this paper as in the policy document on abortion the woman's circumstance and choice takes precedence over the life of the unborn child she carries. Her circumstances, say the writers, present "another theological challenge."
"Reformed theology does not require a specific course of action when making a decision about whether to keep a pregnant woman on life support when death is imminent or when she has already met the criteria for brain death (discussed below). The specific circumstances must be examined, and individual moral commitments and beliefs of the pregnant woman and her partner should govern whatever decision is made, in light of respecting the woman's right to govern what is done to her body." The writers state that "infants supported under these conditions . . . generally have poor outcomes." (They offer no support for this opinion,) and that "If maintaining the pregnant woman on life support violates her own wishes, it is not ethically defensible to impose that upon her." They also point to the importance of pastoral presence in discussions with the woman (if prior to her death) and her partner.
It is true that not all babies in utero survive the brain death of the mother and subsequent life support. Some die in utero and others through spontaneous miscarriage. It is worth noting that babies also die in the womb or due to miscarriage when mothers live. There are also numerous cases of healthy infants born after their mothers died see (here and here and here and here). Writers omit the fact that there are two lives at stake when a woman who is pregnant comes to the end of her life. The pastor can be an advocate for the unborn child and tenderly remind grieving families and healthcare providers that there is a second human being that lives in this situation and continues to need their nurture and protection.
Pastor can ask clarifying questions to guide family members making decisions about artificial nutrition and hydration: Is the potentially fatal condition reversible? If the answer is yes, then nutrition and hydration should be provided by normal or artificial means. If the condition is irreversible is the patient conscious? Is death imminent with or without interventions? If yes, then artificial nutrition and hydration should be given only when it provides comfort care to those that can experience comfort or respect care to those that cannot. In the last days of life it is normal for the digestive system to shut down. To begin artificial nutrition or hydration at this point may bring pain or discomfort. What is always very clear is that we should not withhold nutrition and hydration for the purpose of ending a human life. (Stewart, Gary P. and others, Basic Questions on End of Life Decisions, "Center for Bioethics and Human Dignity, 1998)
Again in this section words that haunt me from the abortion policy document appear, this time in reference to palliative sedation. "As a last resort" writers state, in "rare cases" when treatment of pain does not provide adequate relief, palliative sedation can be considered. The "purpose" is to "relieve uncontrolled pain and suffering, not to hasten a person's death." They provide a list of conditions that might merit its use: "agitated terminal delirium, intractable nausea and vomiting, uncontrollable pain, or unrelenting shortness of breath in actively dying patients who have not responded to the usual palliative treatments."
Full involvement of the family in decision-making about the use of palliative sedation is recommended and the involvement of hospice and chaplaincy encouraged.
Citing "our Reformed tradition" authors state that we ought not "assume or project divine judgment on those who may hasten the end of their lives." They go further projecting the idea that "we have a positive responsibility to contribute to God's healing whenever we can—even when that healing is not a cure, but a grace-filled conclusion."
Again the writers lift up involvement of the family in "supporting the patient in making decisions consistent with the patient's lived experience and conscience." Then they go too far:
And if the General Assembly approves those words we go over the falls in the same way we ceded hundreds of years of historic Christianity's protection of the unborn from abortion by giving circumstances and choice priority over human life.
Whether the physician prolongs life or allows its cessation we should not see them as "playing God" but as "assisting God in the work of caring for us..." "They are not usurping God's role."
Authors then point to the Christian journey which does not end with death. "For Christians, however, this journey does not end with dying. While family, friends, pastoral leaders, and medical providers help us to the precipice of death, the next step on that journey beyond death is something with which no human can assist. At that point, we are lifted up into the communion of saints and the presence of Christ, an abiding presence from the beginning of life and beyond death."
Were it not for the one paragraph quoted above, I would gladly lift up this paper as worthy of the study of individuals and congregations across the church. The statement that "PAD might possibly be justified and done with reverence and even thanksgiving" takes the church outside our Presbyterian and Reformed understanding that "in life and in death" we belong to God. A decision to take a medication that ends one's life is very different from refusing a treatment that might prolong it for a time or ending nutrition when the body can no longer process it and death is imminent. It is much more a willful act of taking control over one's life in a power struggle against God.
• Facilitating discussions between parents and medical team to alleviate a sense of powerlessness and help them find peace.
• Discuss a prevalent concern that "faith in God requires that "everything be done" to keep their child alive." Writers mention dialysis, intubation, use of ventilator, and cardiopulmonary resuscitation as options that are reasonable if the "culminate in the return of function," or limited when death is imminent or "for whom a return to meaningful functioning is not a reasonable expectation." (emphasis mine) I find that term 'meaningful functioning' to be troubling. Who decides what is "meaningful" for a child? Is the value of the child's life reduced to function? Is that bodily function? Vocational function at some future date? Mental function?—Who decides?
• Pastors can also facility consultations with healthcare ethics committees and the child's parents and help healthcare teams understand the position of the church on end-of-life issues.
• Pastors may also make parents aware of opportunities for pediatric hospice and palliative care. They can help parents ensure the comfort of the child and the benefits and burdens of various treatments. The pastor may also help parents navigate concerns about the use of opoids for pain control.
Words have meaning and two words dominate the paragraph dealing with dying pregnant women in this paper. One is spoken: 'circumstances' and one is unspoken: 'choice'. Those are the same two words that dominate the PCUSA policy statements on abortion. In this paper as in the policy document on abortion the woman's circumstance and choice takes precedence over the life of the unborn child she carries. Her circumstances, say the writers, present "another theological challenge."
"Reformed theology does not require a specific course of action when making a decision about whether to keep a pregnant woman on life support when death is imminent or when she has already met the criteria for brain death (discussed below). The specific circumstances must be examined, and individual moral commitments and beliefs of the pregnant woman and her partner should govern whatever decision is made, in light of respecting the woman's right to govern what is done to her body." The writers state that "infants supported under these conditions . . . generally have poor outcomes." (They offer no support for this opinion,) and that "If maintaining the pregnant woman on life support violates her own wishes, it is not ethically defensible to impose that upon her." They also point to the importance of pastoral presence in discussions with the woman (if prior to her death) and her partner.
It is true that not all babies in utero survive the brain death of the mother and subsequent life support. Some die in utero and others through spontaneous miscarriage. It is worth noting that babies also die in the womb or due to miscarriage when mothers live. There are also numerous cases of healthy infants born after their mothers died see (here and here and here and here). Writers omit the fact that there are two lives at stake when a woman who is pregnant comes to the end of her life. The pastor can be an advocate for the unborn child and tenderly remind grieving families and healthcare providers that there is a second human being that lives in this situation and continues to need their nurture and protection.
Withholding/Withdrawing Nutrition and Hydration in End-of-Life Care
There is much helpful education in this section about the intake of food and fluid at the end of life and the ways "the human body is preparing itself for death." Writers discuss the natural decline in eating and drinking and in feelings of hunger and thirst, that dehydration may actually offer some pain relief, and the problem of difficulty in swallowing that may lead to aspirated food and pneumonia. Feeding through a PEG tube may be appropriate for patients who have a "potentially reversible condition" but in other cases may lead to "protracted death with poor quality of life." Generally once a patient has ceased to eat or drink death follows within two to three weeks. The writers state that "medical evidence very clearly indicates that this is a painless compassionate way to die" but they do not cite any support for that statement.Pastor can ask clarifying questions to guide family members making decisions about artificial nutrition and hydration: Is the potentially fatal condition reversible? If the answer is yes, then nutrition and hydration should be provided by normal or artificial means. If the condition is irreversible is the patient conscious? Is death imminent with or without interventions? If yes, then artificial nutrition and hydration should be given only when it provides comfort care to those that can experience comfort or respect care to those that cannot. In the last days of life it is normal for the digestive system to shut down. To begin artificial nutrition or hydration at this point may bring pain or discomfort. What is always very clear is that we should not withhold nutrition and hydration for the purpose of ending a human life. (Stewart, Gary P. and others, Basic Questions on End of Life Decisions, "Center for Bioethics and Human Dignity, 1998)
The Roles of Palliative and Terminal Sedation in End-of-Life Care
"It is not uncommon for dying persons, especially those in severe physical or emotional pain, to ask their physician to help hasten their death." "The fear of suffering" is significant and many who request aid in dying are really "calling for help—either for relief of ph8ysical pain or relief of profound spiritual and emotional suffering." Depression and anxiety are common risks in the end stages of disease. Ministers and chaplains "can be invaluable in helping patients come to terms with this suffering."Again in this section words that haunt me from the abortion policy document appear, this time in reference to palliative sedation. "As a last resort" writers state, in "rare cases" when treatment of pain does not provide adequate relief, palliative sedation can be considered. The "purpose" is to "relieve uncontrolled pain and suffering, not to hasten a person's death." They provide a list of conditions that might merit its use: "agitated terminal delirium, intractable nausea and vomiting, uncontrollable pain, or unrelenting shortness of breath in actively dying patients who have not responded to the usual palliative treatments."
Full involvement of the family in decision-making about the use of palliative sedation is recommended and the involvement of hospice and chaplaincy encouraged.
The Determination of Death and Considerations About Organ Donation
Organ donation is presented in this paper as a concrete way of fulfilling "Christ's command to love and serve others" and "a compassionate act. . .as long as doing so does not cause one's own death." Writers include a helpful discussion of when death occurs and the various ways it may be determined as well as controversy about the criteria for determining death. Also discussed is the separation between medical care teams caring for the patient and the transplant team. The authors overtly "encourage consideration of organ donation by all Presbyterians."Pastoral Care of Persons Seeking Physician Aid in Dying
While Christians have a "presumption toward life" . . . "when our callings appear blocked. . . then sometimes in resignation, anger, grief, or to spare others the burden of our dependence, we may consider ending our lives." Physician aid-in-dying (PAD) and physician-assisted suicide (PAS) is legal in several states and "while Presbyterians hold many views on the legalization of PAD, and while the PC(USA) has not taken a position in opposition to such legalization, pastoral and communal support of persons considering PAD needs to take into consideration a number of important factors."- Palliative sedation manages pain by inducing some level of unconsciousness—a "state of anesthesia" which relieves suffering.
- U.S. Supreme Court has legalized the "withdrawing artificial feeding and other life-support technologies, leading to death by 'natural causes or processes
- "Hospice programs have turned pain control into an art form and there is hardly any pain that is uncontrollable."
- Writers wonder then "why there is so much interest in legalizing PAD?" They propose some answers: avoidance of greater physical and mental deterioration; non-physical anxiety or suffering, greater control over timing of death.
- Authors note that there are restrictions on PAD. The patient must administer the medication themselves without assistance, otherwise it becomes "active euthanasia" which is illegal in all 50 states.
Citing "our Reformed tradition" authors state that we ought not "assume or project divine judgment on those who may hasten the end of their lives." They go further projecting the idea that "we have a positive responsibility to contribute to God's healing whenever we can—even when that healing is not a cure, but a grace-filled conclusion."
Again the writers lift up involvement of the family in "supporting the patient in making decisions consistent with the patient's lived experience and conscience." Then they go too far:
"If it is indeed consistent with the values and beliefs of the dying patient, if the kinds of goodbyes and closings that they seek can be better accomplished, then the option of PAD might possibly be justified and done with reverence and even thanksgiving."
And if the General Assembly approves those words we go over the falls in the same way we ceded hundreds of years of historic Christianity's protection of the unborn from abortion by giving circumstances and choice priority over human life.
Whether the physician prolongs life or allows its cessation we should not see them as "playing God" but as "assisting God in the work of caring for us..." "They are not usurping God's role."
Authors then point to the Christian journey which does not end with death. "For Christians, however, this journey does not end with dying. While family, friends, pastoral leaders, and medical providers help us to the precipice of death, the next step on that journey beyond death is something with which no human can assist. At that point, we are lifted up into the communion of saints and the presence of Christ, an abiding presence from the beginning of life and beyond death."
Were it not for the one paragraph quoted above, I would gladly lift up this paper as worthy of the study of individuals and congregations across the church. The statement that "PAD might possibly be justified and done with reverence and even thanksgiving" takes the church outside our Presbyterian and Reformed understanding that "in life and in death" we belong to God. A decision to take a medication that ends one's life is very different from refusing a treatment that might prolong it for a time or ending nutrition when the body can no longer process it and death is imminent. It is much more a willful act of taking control over one's life in a power struggle against God.
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