Between Life and Death

by Between Life

  Care plans and quality measures for nursing homes and other settings, however, focus almost exclusively on narrow issues of health and safety like fall prevention, management of feeding tubes, nutrition, pressure ulcers and so on. These are important. But just as, if not more important to people who need help with their needs for day-to-day living is the ability to have a say over matters like privacy, the risks they are permitted to take, when they go to bed and when they wake up, how they furnish and decorate their rooms, opportunities to pursue purposes larger than just mere existence, and who will make decisions when they cannot.12

  Such statements illustrate that, ironically, while as a society we praise autonomy at all costs, we strip this freedom away from the wisest and most experienced among us. At times we infantilize those who have accumulated the most knowledge and memories and deprive them of the spiritual riches that infuse meaning into their days. This unsettling trend highlights the crucial importance of hospice and palliative care, initiatives that sift through the diagnoses and the labels to focus on the individual—packed with potential, aglow with memories and dreams—lurking beneath the illness.

  As believers, we are called to care for those afflicted with severe illness (Matt. 25:36–40). Such support is not limited to the medical trappings of a double room with curtain dividers or a hospital bed with a plastic mattress and an alarm but extends to nurturing the heart and the mind. Christian fellowship mandates that we help the terminally ill in their quest to continue the activities that add abundance to life and to foster intimacy, trust, and togetherness such that no struggling person falls prey to the lie that he “would be better off dead.”

  When the disarming effects of disease strip us of dignity and drain away our hope, as Christians we turn to the hope that endures even when our bodies twist and warp. We witness a renewal in Christ that surpasses the limits of our failing minds (1 Pet. 1:3). While misery steals our voice and cripples our limbs, we cleave to the assurance of a new heavens and a new earth, when disease no longer darkens hearts. We wash ourselves in the hope of that day, when our hearts “shall rejoice in your salvation” (Ps. 13:5), when with renewed bodies and invigorated minds, we sing, “I trust in the steadfast love of God forever and ever. I will thank you forever, because you have done it” (Ps. 52:8–9).

  Take-Home Points

  In physician-assisted suicide (PAS), a doctor provides a terminally ill patient with medication to end his or her own life. Although controversial, this practice is increasingly common in the US, now legal in seven states.

  Legality does not always equate with Christian morality, and PAS exemplifies this rift. Although support for PAS emphasizes compassion and patient autonomy—both honorable pursuits—these tenets do not justify killing.

  PAS differs from comfort measures in intent. The goal in PAS is to facilitate death. In comfort measures, the aim is to alleviate suffering from futile or excessively burdensome measures. In the latter, if patients survive once organ support is discontinued, no actions are taken to speed death.

  Most people who pursue PAS seek relief not from intractable pain but from dependence upon others and poor quality of life in the setting of debilitating illness. Such data highlight our inadequacy in supporting those stricken with terminal illness. As Christians, we as a community of believers have a responsibility to aid those among us facing severe illness, through hospice and other support.

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  Advance Care Planning

  Few subjects bring conversation to a screeching halt as dramatically as musings about death. The topic strikes us with fear and casts a pall over a room upon its mere mention. Yet when we stalwartly avoid the issue, we suffer through interventions intolerable to us, cannot voice our objections, and heave the burden of our care upon loved ones without equipping them for the task.

  Advance care planning aims to avoid such turmoil. An umbrella term, advance care planning encompasses all documents and processes intended to help us discern our wishes for end-of-life care and includes healthcare proxy forms to designate a surrogate decision maker, orders for life-sustaining treatment, and living wills. When approached with care, advance care planning can offer solace to our loved ones as they tackle difficult decisions on our behalf.

  At the Bedside

  I had never met her; I did not know her voice or the unique flash of her smile. But during a terrible ten-hour period, I plunged my hands into her bleeding abdomen three times.

  A colleague had called for help in the operating room. He was peeling away a tumor from her pelvis when it tore open a tangled network of adherent vessels, releasing a tide of blood into her abdomen. When I arrived, the anesthesiologist was performing CPR, and my colleague, sweat drenching his scrub cap, was scrambling to stop the bleeding.

  We packed her pelvis with gauze and transfused liters of blood. When she regained a pulse, we rushed her to the angiography suite, where radiologists attempted to control the bleeding with catheters. Their procedure dammed back the flood but did not dry it up. We explored her abdomen again, clamped and tied vessels, packed more densely. She seemed to stabilize, so we brought her to the ICU.

  Still, the hemorrhage continued. When I explored her abdomen for a third time, every surface oozed with blood that had thinned to the consistency of water. Her blood could no longer clot, and her kidneys shut down. As the levels of acid in her bloodstream climbed, her heart intermittently convulsed into dangerous rhythms.

  Trembling, my heart leaden with dread, I called her sister. We had already spoken several times that evening, each time with our focus on the urgent need to act. This call would be different.

  “Please come in,” I said, my voice unsteady. “Quickly, if you can. Please just come.”

  When she arrived, I immediately noticed the family resemblance: the wide-set eyes, the soft, rounded features. For a wonderfully absurd moment, I flirted with the idea that this woman who sat jingling her keys in the waiting room was my patient, that all was well, that my mind had fabricated the entire horror. But her eyes met mine, their gaze fragile with grief, and all fantasy dwindled away.

  She spoke first: “You’re going to tell me my sister is dying, aren’t you?”

  I nodded, then sat down and recounted the awful events. After only a few sentences, she held up her palm.

  “She would not want all the machines you’re talking about keeping her alive,” she said. “Not if she’s dying, and there’s no hope.”

  “She talked with you about this?” I asked.

  “Oh, so many times. We both watched our mother die a horrible death after two months in the ICU. After that, my sister filled out a living will. She made sure I had a copy.” She glanced through the glass doors into the ICU. “She doesn’t want any of what you’re doing in there.”

  I nodded and waited while she stared for a few moments at the floor. When she spoke again, her voice was cracking. “Can I be with her, when you let her go?” she asked.

  “Of course. And you can stay as long as you need.” I reached out and placed my hand on her arm, as my own tears broke through. “I’m so sorry that this happened. I’m sorry we couldn’t save her.”

  She bit her lip, wiped her eyes. “I know. I know you’ve done all you could,” she said kindly. “I just don’t want her to suffer. She was so clear about this kind of thing. If God’s calling her home, she doesn’t want us getting in the way.” Her eyes met mine again. “I don’t want to lose my sister. But at least I don’t have any doubt about what she would want.”

  Why Participate in Advance Care Planning?

  This case scenario offers an example of how advance care planning can guide those we love through heartbreaking circumstances. The power of this process to protect is not just hypothetical. In one study of four thousand people at the end of life, care decisions rested upon the shoulders of loved ones in nearly half of cases.1 Research shows that in such circumstances, advance care planning protects against care that contradicts our values, guides physicians and care
givers when death nears, and prevents futile and aggressive treatment that prolongs dying.2 Furthermore, studies reveal less depression, anxiety, and stress among loved ones when we provide instructions for them ahead of time.3

  As Christians, advance care planning has even deeper value. The focus on our final days permits us to prayerfully consider our lives and to seek after the Lord as our narrative draws to its conclusion. It allows us to echo the psalmist, who declares: “I will meditate on your precepts and fix my eyes on your ways” (Ps. 119:15). The process offers a window for spiritual preparation, to lay up for ourselves treasures in heaven (Matt. 6:20). With the span of our lives receding behind us, the memories crowding together like cobblestones, we can offer up praise for his mercies and thanks for his blessings and pray about the shadows that linger, the dark hollows that remain unfilled in our hearts. We can intentionally focus on God’s saving work through Christ, our reconciliation, and the facets of our lives through which we can more fully honor him. We can embrace Paul’s directive: “Whatever you do, work heartily, as for the Lord and not for men, knowing that from the Lord you will receive the inheritance as your reward. You are serving the Lord Christ” (Col. 3:23–24). Advance care planning, even while it may unnerve us, grants us an avenue for worship through faithful discernment before catastrophe wrenches speech, thought, and prayer from us. When we embrace advance care planning with our minds on heaven, the process evolves into an ongoing dialogue rather than remaining an awkward and unwelcome hurdle to overcome.

  Introduction to Advance Care Planning

  Documentation in advance care planning focuses on two key areas: surrogacy and care preferences. Phrased more simply:

  1. Who will make decisions for me if illness incapacitates me?

  2. Which approaches to treatment are consistent with my goals and which are not?

  Most advance care planning forms address these two questions.

  As we consider a daunting array of documentation, we may fear that such measures will limit our freedom and bind us to a fate to which we may later object. However, advance directives intend not to constrain our choices but give us a voice when illness claims our ability to speak for ourselves. We should regularly reappraise our care goals as our baseline health status improves or deteriorates to protect against treatment at odds with our values.4

  Legal documentation varies between states, and the array of options can confuse those of us already struggling with difficult issues. Although the forms themselves provide crucial instructions in the event of our incapacitation, contemplation and candid discussion matter most. Conversations with trusted doctors, pastors, and family to work out our convictions carry more import than does any individual checkbox form.

  In the following discussion, we will review the major categories of advance directives. Appendix 2 provides links to resources on state-specific documentation, and reference to these sites will provide details unique to your state of residence. The appendix also includes a draft of my own living will, offered as an example.

  Healthcare Proxy

  A healthcare proxy, also called a healthcare durable power of attorney, legally designates whom physicians should consult for medical decisions on our behalf when we cannot communicate. The form usually denotes a primary surrogate decision maker and a secondary backup. Proper documentation requires signatures from all involved parties, i.e., from you, from one or two surrogates, and from two witnesses.

  Without a healthcare proxy on file, physicians will still seek out your family for guidance, giving your spouse first priority, followed by your children. Although law does not require a proxy form, official designation avoids conflict and uncertainty within families and opens the channels of communication, promoting an exchange of thoughts regarding what matters to you most in life. Not only does this process protect you against unwanted treatments, but it ameliorates the guilt, stress, and doubt that your loved ones shoulder when critical illness claims your speech.5 When we appoint someone we love to assume our voice and couple that designation with in-depth conversations, the hard decisions remain ours, not theirs. Families who designate a surrogate and discuss wishes ahead of time often voice relief. “I know this is what he would have wanted,” they say. “This is so hard to do, but at least I know I’m honoring his wishes.”

  When designating a healthcare proxy, carefully consider who will best weather the emotional storm that end-of-life decisions unearth. Once charged with the responsibility of acting on your behalf, your healthcare proxy may need to make decisions that conflict with his or her own preferences.6 Carefully consider, therefore, whom God has equipped for the task.

  Physician Orders for Life-Sustaining Treatment

  Over the past decade, a nationwide initiative has promoted “physician orders for life-sustaining treatment” (POLST). The POLST program aims to protect us against unwanted interventions in emergency settings through a standardized checkbox form that documents preferences for specific interventions, including resuscitation, ventilation, and hospital transfer. You or your surrogate signs the form, as does a treating physician, ideally after extensive discussion about end-of-life care.

  POLST forms quickly and clearly communicate preferences for life-sustaining treatment when time is crucial and especially protect against unwanted treatment during transfers between facilities, when communication can be chaotic.7 Emergency responders, e.g., paramedics, emergency medical technicians, police officers, and fire department workers, are trained to look for the form when providing medical aid to you in your home.

  The usefulness of POLST forms hinges on their simplicity. They declare in clear, unambiguous terms whether emergency responders should intubate us and perform CPR. The streamlined approach of these forms, however, also creates drawbacks, as they do not permit an elaboration of our values in nuanced terms.

  Given the limitations, I would recommend against completing a POLST form until your chronic medical conditions become debilitating or life threatening.8 For example, when enrolled in hospice for untreatable cancer, or when struggling daily with worsening end-stage heart disease, CPR and intubation can inflict clear harm. In these scenarios, POLST forms can protect you. On the other hand, when your list of medical conditions is limited to well-controlled hypertension and diabetes, with treatment options readily available and with a further life expectancy of years, POLST forms provide little help. In fact, such a categorical approach may create arbitrary dividing lines in moments that call instead for discernment and discussion. When doubt persists about whether to complete a POLST form, I strongly encourage in-depth discussion with your doctor.

  Living Wills

  Living wills outline treatment preferences, as do POLST forms; however, they are not limited to checkbox items. They often include space for narrative exposition of values and prompts about specific concerns. For example, the living will form for the state of Alabama includes fields to discuss terminal illness and permanent unconsciousness, as well as artificially administered nutrition. Forms from New York and Oregon include sections that address intolerable pain. Such details provide doctors and loved ones with vital guidance when you cannot communicate your wishes. All advance directive documents can help, but of the options we have discussed, when completed carefully the living will is the most expansive and informative.

  Unlike POLST forms, you can complete a living will without a physician’s authorization, although most forms require signatures from witnesses. To view your state-approved forms for living wills and other advance directives, visit the National Hospice and Palliative Care Organization (NHPCO) website. Another helpful tool is the Five Wishes program, a living will template that elaborates end-of-life preferences in plain language. Web addresses for NHPCO and Five Wishes appear in the Further Reading section in the back of the book.

  Reflecting upon Our Days

  The most helpful advance directive I’ve ever read used no official forms. As my team and I agonized over worsening vital signs, a family member dr
opped a packet of stapled pages into my hands. The narrative detailed the moments in my patient’s life that he most treasured and the ideals that had fueled his days. As I read his words, my patient’s personality and convictions, which his illness had screened from me, unfolded in vibrant strokes on the pages. Although he hypothesized about various medical scenarios, his reflections revealed, most importantly, who he was and what mattered to him. His medical conclusions seemed inevitable, the only conceivable ending to a well-crafted story.

  Such attention to principles has enormous value. Advance directives are a tool. The predominant merit of advance directives resides not in their technicalities but in the conversations they promote and the guidance they convey. Rarely can we predict every possible medical calamity that might befall us. While we should carefully consider the potential risks we face, we are foolhardy to tackle a laundry list of diagnoses without binding them together with unifying principles. Statements of our beliefs as Christians can help. Additionally, clear and simple examples of the moments when our lives bloom with meaning contrasted with moments that hobble us in suffering can help to guide others when we cannot speak for ourselves. Contemplating the intricacies of our lives—our values, our worth in Christ, our memories and hopes—and sharing our conclusions with those dear to us, casts light upon otherwise grim situations. It throws open a door through which sunlight can filter, chasing away the shadows and the cobwebs.

  One story provides an example. A few years ago I oversaw the care of a severely debilitated woman who struggled through complications in the ICU for months. The longer she stayed, the more infections she developed. Soon illness had emptied her of all strength, and even during brief moments of improvement she could barely lift her head from a pillow without assistance.