Pastoral guidebook on end of life holds potential & pitfall, Part II

This is Part II in a seven-part blog series analyzing a resolution coming to the PCUSA General Assembly on the end of life. The paper titled, “Abiding Presence: Living Faithfully in End of Life Decisions,” forms the rationale of the resolution and is offered to the church as a pastoral guide to end of life conversation. Part I can be found here.

Part II The Introduction and Contextual Settings

I’m convinced that nothing can separate us from God’s love in Christ Jesus our Lord: not death or life, not angels or rulers, not present things or future things, not powers or height or depth, or any other thing that is created. (Romans 8:38-39)

I love that this “handbook for caregivers,” opens with this scripture. God’s presence with us in our dying is a theme in the title, “Abiding Presence: Living Faithfully in End of Life Decisions.” I hope to find that theme continued throughout the paper along with the importance of our faithful response to God at the end of life.

“How do I want the end of my life to be?” (emphasis mine) This is the first, and probably not the best, question in the rationale of the resolution being considered for approval at the PCUSA GA in June. A better question for the church follows: “How do we best claim and practice the presence of Christ and the hope of resurrection at the end of life?” Now that’s a conversation starter for the church! It is a question worthy of discussion by the highest governing body of our denomination. I hope that time will be given for substantial consideration of this important topic both at GA and in our local congregations.

The key focus of the paper is “advance care planning.” The introduction lays out the opportunities that pastoral counseling and congregational life offer for education and conversation in the “context of a community of faith shaped by the Reformed tradition.” It delineates four foundational convictions in one of the strongest paragraphs of the document:

Some of our central convictions include: (1) that all life is a gift of God, (2) that life is best lived as a covenantal relationship between God, ourselves, and others, (3) that life is lived most fully in response to a sense of divine calling, and (4) that God’s presence and power are not limited by the boundaries between life and death. These significantly affect how we talk about the end of life in at least two ways. First, these convictions provide a context of faith and hope in which we can begin to understand our own mortality neither as a defeat nor as a meaningless event, but instead as surrounded and inhabited by the loving presence of God. In this way, we can avoid despair and be empowered toward honesty and clarity. Second, these convictions can guide us through the increasingly complex choices our medical technologies now allow us to make. Seen in relation to God, our deaths are neither an end to be embraced nor a crushing enemy to be resisted at all costs. Instead, they are a part of the ordering of God’s good world to which we are called and enabled to respond with imagination, love, and openness to God’s grace.

The introduction moves the reader along to consider relational contexts for end of life conversation. Our decisions about advance care planning are personal, but they are not made in a vacuum. As we seek to make decisions that reflect our deep and abiding faith there are many others who are impacted and who also have need to be heard: family, medical and spiritual caregivers, and friends. In depth conversations about advanced care planning are needed and have great benefit for patient, family, and healthcare professionals. Such conversations should take place early and often.
The A section of the paper seeks to acquaint the church with three particular contexts where communication at the end of life needs to take place: clinical, historical/legal, and theological/ethical.
The clinical context for patients facing the end of life is often complex and fragmented. Communication between various physicians attending to a patient (primary, hospital, specialists) may be lacking and “no single physician is responsible for end-of-life choices.” In the pastoral guide, the writing team seeks to address the problem that conversations are often delayed. The authors give us an insight into some of the reasons ACP conversations do not take place early and often as they ought:
  • Physician reluctance to broach hospice or give a true picture of dire odds of survival
  • Hectic pace and plurality of caregivers in hospitals
  • Office physicians also are pressed to see more patients due to lower reimbursement levels of Medicare/Medicaid
  • Lack of reimbursement for advanced care planning conversations
Writers acknowledge that when the Affordable Care Act sought to address the issue of reimbursement for physician/patient conversations about end of life there was a backlash of “allegations that these conversations will be used to nudge people toward forgoing treatment and hastening death.” While I happen to agree who voice concern that such conversations could be used in coercive ways, I don't believe the answer is to squelch the conversation, but rather to educate and prepare the patient before they talk with their physician.

The paper reveals efforts are being made to better prepare healthcare professionals for end-of-life conversations through “decision aids.”  It’s worth asking (and the authors do not) how these “tools” will be used. The writers hint at some controversy about that and move quickly to promote Advance directives. Authors cite as “foundational documents,” the Living Will and Durable Power of Attorney for Health Care. They add to these newer emerging documents such as Physician Orders for Life-Sustaining Treatment (POLST), Medical Orders for Scope of Treatment (MOST), and Clinical Orders for Life-Sustaining Treatment (COLST). (I will deal more with those later in this series).

The Historical/Legal Context portion of the paper details the path of court cases leading to an established “right to refuse treatment.” The 1990 Cruzan case clarified the need for “clear and convincing evidence” of the patient’s wishes either through written statements or oral statements made to family members or others close to the patient while conscious and competent. Congress then passed the Patient Self-Determination Act or PSDA (1990) obligating healthcare institutions receiving federal funds to “educate and assist” patients in creating advance directives for health.

While U.S. culture has essential agreement about “freedom of individuals to refuse medical treatment,” there is much less clarity about “artificial feeding and hydration” and whether they should be considered “treatment.” The Supreme Court has not ruled in favor of “any right to assistance in bringing about one’s death,” but allows states freedom to permit “physician aid in dying” (PAD). Five states have such legislation. “Active euthanasia,” defined in the paper as “a situation in which a physician or other person acts directly to cause the death of a suffering person,” is illegal in the United States.

According to the guidebook, 26 years after Congress passed the PSDA only 20% of the population has completed advance directives and few of those had input from their physicians before writing them. Lack of specificity “leaves surrogate decision makers in a difficult position” and leads to inaccurately interpreting the wishes of the patient. This is compounded for those who have little access to healthcare. Where does this lead us? The writers conclude:
“All of these problems highlight the importance of the church’s role in promoting advance care planning, which, in order to be successful, needs to be a community effort undertaken among patients, providers, congregants, and others.”
This raises my concern: Again, as in the clinical context section, writers of the paper point to POLST forms which are signed by physicians and act as “a detailed checklist of conditions requiring a decision.” Although the paper alludes to “many considerations and conversations that need to occur before the specific issues outlined on POLST forms are decided,” no cautions are given about the power of a POLST form in your medical file. Once signed by the physician (signatures of the patient or patient’s durable power of attorney are not required) the POLST form appears first in your medical file and treatment is administered or withheld accordingly even if your situation has changed. The agent you have appointed to make decisions on your behalf in an advance directive may be rendered powerless. Critics warn that POLST forms are “biased toward restricting life-sustaining treatment and care.”
Authors of the pastoral guide do reflect a valid concern about barriers to conversations about end-of-life choices in nursing homes and other long-term care settings. Understaffing, aides with minimal training and rapid turnover, residents with dementia, isolation and impersonal care, residents may be vulnerable to having their care determined by state-appointed guardians.

The section on Theological/Ethical Context reads as though designed to support the goals of promoting advance directives and personal autonomy in end-of-life decision making rather than an honest attempt to convey the doctrinal foundations of the reformed tradition. It strikes me as being more about human empowerment at the end of life than about the activity and presence of God which engenders hope for us in our dying.
Some statements I can affirm

“…[T]he spiritual and moral perspectives of Christianity should offer something distinct to the end-of-life conversations between a person of faith, their families, physicians, and others.”

“What we believe about God has a profound impact on how we understand our own life and death and on how we should navigate them.”

Three key affirmations follow and are a mixed bag
“First, God is “sovereign.” This means that God is a power and presence that is not diminished by any event in life or in death.” Although it is a strong affirmation that “God is always at work in everything that happens” writers could not resist introducing the theme of “patient autonomy” and I cannot help but wonder to what purpose?
“Second, God both blesses and orders (or “governs”) …Life goes on in the power of this blessing and to participate in it is joy….But the blessing is not given without limits…Death is one feature of this context.” The authors seem to backpedal from describing death as a just penalty for human sin in a fallen world. Instead the focus is put on the “permanent loss of relationships that death entails” as being what is most “intolerable.” In this perfect place for its’s inclusion, no mention is made of the resurrection and the promise of eternal presence in relationship with our Father God. One feels that the statement about the loss of relationships is a set up for a later sentence, “When these (i.e. pain and suffering) are overwhelming, and when they destroy the capacity for human relationships and steal the joy from living, we may reasonably conclude that God is calling us to face our limitations and to accept the inevitability of death.” Sounds perilously close to an argument for the choice to hasten one’s death does it not?

“Third, God orders or governs life in part by means of “covenantal” relationships. Here the writers describe the relationship between God and humans as one of “covenant-partners.” It seems not quite reflective of the appropriate humility of our position as servants or even slaves of Christ. In the theological context of end-of-life decision making one would expect the paramount relationship to be our relationship to God as our Creator and to Christ as our Savior and Lord.

The paper moves on to introduce the concept of “quality of life” and the “effects that the continuation or ending of one’s life might have on others.” Referencing the “norms implicit in medical practice” to do no harm and advance the good of the patient authors apply those concepts to the end-of-life citing an obligation to “avoid harm (both to ourselves and our loved ones.)” The writers then segue to the topic of suffering. “We can ask ourselves, therefore, whether enduring pointless suffering does not amount to the infliction of unnecessary harm on ourselves.” The section ends with the rather unsatisfying paragraph below:

Of course, this principle also applies to the sustenance of life. The obligation to do no harm should give us serious pause when contemplating ending medical treatments or requesting treatments that would hasten our deaths. In both cases, however, the obligation to do no harm must be balanced against the obligation to promote the good. Again, where good is defined relationally, as in the context of the Reformed tradition, decision making becomes less focused on narrow considerations about the morality of specific acts or interventions, expanding instead to include a broader set of people and circumstances. Sharing a vision of God’s ordering of human life in relation to others, we may view death as being subject to forces in God’s world that we do not control. These forces are not limited to injury and disease but also include pain and suffering. When these are overwhelming, and when they destroy the capacity for human relationships and steal the joy from living, we may reasonably conclude that God is be calling us to face our limitations and to accept the inevitability of death. However, it is also true that individuals with very limited capacity to respond to others may still possess sufficient capacity to be in relationship with those they love and trust. Ultimately these decisions rest with particular individuals and emerge from their various conversations, but the theological context offered by the Reformed tradition provides a distinct and important frame for persons of faith who are struggling with these issues. (p.14)

I’m left concerned that some will hear these words as an obligation to avoid becoming a burden to friends and family or an affirmation that they are to escape suffering by hastening their own death. I’m left feeling that I still haven’t heard that “something distinct” that Christianity brings to our conversation at the end of life. Perhaps I’ll find it in the pastoral support and clash of cultures segment which I’ll deal with in Part III.