Between Life and Death

by Between Life

  In contrast with cases of dementia and dying, the role of artificially administered nutrition among those with severe neurological injury, as in the case of Terri Schiavo, is more complicated and controversial. Coma and persistent vegetative state (see chapter 9) render people unconscious and unaware of pain. Artificially administered nutrition in such cases should not cause physical discomfort, although it might invite complications through recurrent inhalation of the food, or diarrhea, or tube dislodgement. Tube feeding in severe brain injury may also prolong our lives under conditions that conflict with our convictions about life and service to God. Decisions in these cases are highly individualistic and depend on our personal concept of suffering and our understanding of life in Christ. We will discuss concerns about brain injury and advance directives in greater depth in chapters 9 and 12. For now, I recommend that as you consider this issue, you examine the facets of life that have enabled you to serve God in faith and love and consider how severe brain injury and tube feeding would transform your walk with the Spirit.

  The Bread of Life

  While we navigate difficult choices with our own faculties and free will, ultimately our lives depend upon God’s grace: “Man shall not live by bread alone, but by every word that comes from the mouth of God” (Matt. 4:4). God provided food from heaven for his people in the wilderness (Ex. 16:11–12). Jesus fed five thousand people with a child’s portion of bread and fish (Matt. 14:13–21). “I am the bread of life,” he said. “Whoever comes to me shall not hunger, and whoever believes in me shall never thirst” (John 6:35). While such verses may not direct our decisions about feeding tubes and formulas, they offer comfort. While we should seek to feed the hungry in love, we need not force calories into our failing bodies in the twilight of life. Through Christ, we cling to a nourishment far richer than any tube can provide.

  Take-Home Points

  When critical illness impairs our ability to eat, physicians can provide nourishment artificially.

  Nutrition can be delivered through tubes entering our gastrointestinal tract through the nose or abdominal wall or via catheters placed in large veins. Of these two modalities, tube feedings, in general, are preferred for their lower infection risk.

  Artificially administered nutrition creates uncomfortable side effects, including diarrhea, bloating, discomfort from tubes, and infection.

  Although we may be tempted to pursue nutrition at all costs, we must realize that its drawbacks may be burdensome in specific scenarios. In particular, at the end of life and in advanced dementia, tube feeding worsens discomfort without proven benefit.

  8

  Dialysis

  Organ failure warns of life-threatening illness at minimum and impending death at worst. Some of the sickest people in the hospital require a ventilator for respiratory failure. Heart failure claims the lives of hundreds of thousands each year. Liver failure deranges nearly every system in the body, progressing until transplantation is the only life-saving option.

  Until the 1940s, renal failure followed this pattern and was always fatal. The advent of dialysis, however, has transformed renal failure from a death sentence into a chronic medical problem. In contrast with other classes of organ failure, we can supplement or replace kidney function for as long as decades. The unusual case of dialysis poses its own unique dilemmas as we consider end-of-life care, so in this chapter we will review those peculiarities and tease out when it can preserve life and when it threatens to prolong suffering and death.

  At the Bedside

  For three weeks, she drifted in and out of delirium. She would cry out to loved ones long departed as nurses dressed sores on her buttocks. At one end of her bed, a continuous dialysis machine alternately murmured or blared its alarms to announce a clotted circuit. At the other, a tree of IV pumps issued pressors into her bloodstream. Throughout it all, her husband, stooped with age, sat beside her and intermittently held her hand.

  She had severe disease of her heart valves but was too ill to undergo cardiac surgery. Her failing heart could no longer tolerate the routine hemodialysis that had supplemented her shriveled kidneys for decades. Even on the gentle continuous dialysis in the ICU, her blood pressure dipped to dangerous numbers, and she required increasing doses of pressors to keep her alive.

  Her dialysis access—the conduit between her bloodstream and the machine—posed recurrent problems. The surgically constructed fistulas in her arms had clotted years ago and now lurked useless beneath skin riddled with bruises and scars. After veins in her neck also clotted, she relied upon a stiff catheter in her groin; with that catheter in place, she could no longer bend her legs or get out of bed.

  For weeks, heart and kidney specialists grappled over options for her. She could not withstand procedures to reconstruct her heart. With her heart valves narrowed and leaking, her blood pressure dropped precipitously low with every attempt at dialysis. Were she ever to leave the hospital, her heart would not withstand dialysis at an outpatient center.

  After each somber conversation with her husband, he would listen to our words, then look at his beloved. “I hear what you’re saying, Doc,” he would finally answer in a low, subdued drawl. “But she’s my wife. Just do what you can, please. You gotta help her.”

  One morning, her dialysis catheter failed again. She would need yet another procedure to replace the line in order to resume dialysis. The nurse practitioner who cared for her delivered the news with slumped shoulders. “Should we really replace this catheter?” she asked. “I mean, what’s our end point? How much more can we do to this poor woman?”

  As if on cue, the senior kidney specialist (nephrologist) crossed the ICU to speak to us. “We have no more options,” he admitted. Although eighteen patients occupied the ICU, we knew about whom he spoke.

  “We’ve feared the same for a while,” I said.

  “I know. I just had a long conversation with her husband. He’s having a hard time, but at this point further dialysis is futile. Please, don’t replace her catheter. I’ll discontinue the dialysis orders.”

  Her nurse, who had listened warily to our conversation, breathed a sigh of relief. “He’s going to be heartbroken,” she said with a tremulous voice. “But it just needs to stop. All she does is moan in pain and shout for people who aren’t here. What we’re doing to her is awful.”

  Back in her room, we found her husband with his head in his hands.

  “You’re giving up on her,” he groaned when we entered. “You can’t stop the dialysis. She’ll die if you do.”

  I placed a hand on his shoulder and felt the bones beneath his shirt shudder against my palm.

  “I’m sorry. I know it’s so hard. But we can’t get her well. Nothing we’re doing is helping her, and if we continue, we’ll only be hurting her.”

  “I’ve been with this woman for sixty years,” he answered, his jaw set. “I promised God I’d cherish her always. But now you’re telling me that I’m losing her. That I’ve failed her. How can I accept that?”

  An Introduction to Kidney Failure

  Shifts in the volume of urine you excrete daily hint at the versatility of the kidneys and their capacity to tightly regulate the fluid in your body. Your kidneys filter toxins and maintain the normal balance of water, electrolytes, and acid in your bloodstream. They moderate blood pressure and influence platelets that help form blood clots when you injure yourself.

  In kidney (renal) failure, excess fluid leaks out of the bloodstream, soaking your lungs and swelling your limbs. Potassium and sodium, both vital for the function of your heart and nerves, rise to dangerous levels. The acid concentration in the blood increases, further worsening breathing and disrupting the delicate balance your cells require to function. By-products of metabolism, normally removed through the urine, linger in the bloodstream and can cause confusion, which if left untreated progresses to delirium and even stupor. If end-stage renal failure is left untreated, drowsiness progresses to coma, and you can develop fatal respiratory failure or a
dangerous heart rhythm. Until the advent of dialysis, this was the outcome for most with kidney failure.

  Supporting the Kidneys When They Fail

  A host of long-standing conditions can cause chronic kidney impairment, among them diabetes, chronic heart failure, liver cirrhosis, and autoimmune diseases. Kidney failure in these scenarios often occurs gradually over months to years until it declines to a point requiring dialysis.

  In contrast, kidney failure in the ICU usually occurs suddenly, often secondary to shock. As discussed in chapters 3 and 6, dehydration, bleeding, widespread infection, and acute heart failure are common culprits. Kidney failure in this setting is a common problem, affecting 35 to 67 percent of ICU patients, but the majority recover, with only about 5 percent of people requiring dialysis.1 Those who need dialysis, even in a temporary fashion, are often the most severely ill, with over 50 percent dying in the hospital.2

  When shock occurs in those of us who are otherwise vigorous, kidney injury is often reversible, with only a brief decline in function. The kidneys still produce urine, and physicians simply monitor the kidneys.

  More severe damage, when urine production stops entirely, may prompt ICU physicians to give diuretics, i.e., medications that stimulate the kidneys to filter fluid and remove potassium. If these medications cannot control the dangerous effects of kidney failure, and laboratory values and symptoms threaten life, nephrologists start dialysis.3 Sometimes dialysis is only a temporary measure; however, in the most extreme cases, when shock is profound or when chronic medical conditions predispose us to kidney damage, kidney failure can be permanent. In such cases we continue dialysis after we leave the ICU and over time receive care from a nephrologist who determines whether we will need a kidney transplant.

  Understanding Dialysis

  Dialysis mimics the kidneys by restoring the normal chemical environment of the bloodstream. Specifically, it filters out dangerous accumulations of electrolytes and waste products and replaces these with safe amounts of molecules key to life. Dialysis also eliminates excess fluid that would otherwise saturate the lungs.

  Ninety-four percent of people with end-stage kidney disease in the US receive hemodialysis, usually at specialized outpatient centers.4 In hemodialysis, blood is pumped into a specialized machine where it is filtered and then returned to you through a catheter or surgically altered blood vessel. You will usually require hemodialysis three times weekly, with each session lasting three to five hours. Long-term hemodialysis requires a surgically created connection between an artery and a vein in your arm designed to withstand the high pressures of dialysis. In an urgent setting, a catheter, similar to the central lines described in chapter 6, can fulfill this requirement; however, chronic use of such lines risks infection and increases mortality.5

  In the ICU you are usually too sick to tolerate the rapid fluid shifts necessary for hemodialysis to work. To achieve dialysis safely in the ICU, clinicians use continuous dialysis, which is essentially hemodialysis that runs continuously at a gentle, slow rate. Continuous dialysis still filters the blood but does so slowly to avoid the swings in blood pressure so hazardous for ICU patients. Once you stabilize from shock, physicians may try taking you off continuous dialysis and transition you to hemodialysis.

  In many cases of severe and sudden kidney injury, we cannot know the likelihood for kidney recovery for weeks, sometimes even months. Such predictions involve review of multiple data points over time, with careful consideration of your baseline medical conditions. When considering if dialysis will be temporary or long-term, ongoing and explicit conversations with your kidney specialist are crucial.

  Living with Dialysis

  Although dialysis can sustain us for years, it so alters daily life that sufferers compare its burdens to those of cancer and HIV.6 A three-times weekly hemodialysis schedule jeopardizes independence and our ability to work, constraints that can dishearten us as we seek to serve the Lord through our vocation. An array of distressing physical symptoms also accompany dialysis. More than half of patients who require chronic hemodialysis report crippling fatigue, bone pain, sleep disturbances, and pain from repeated needle sticks at the dialysis access site.7 Unsurprisingly, depression arises frequently among those who suffer such symptoms.8

  In the US, patients who require dialysis are quite sick in general, with an annual mortality rate of 20 percent, and as high as 60 percent within a year of initiating dialysis.9 This high death rate among dialysis recipients exceeds that in other countries, possibly due to the greater burden of advanced cardiovascular disease in the US.10 The take-home point from such statistics is that the need for dialysis should trigger conversations about the burden of disease. Dialysis should prompt questions about our overall risk for prolonged suffering with aggressive treatments.

  When Dilemmas Arise

  Decisions about whether to start or continue dialysis can distress us. In the scenario described at the beginning of this chapter, the fragile patient suffering from irreparable heart failure had no further options for recovery. In her case, continuing dialysis would delay death for a short time but at the cost of prolonged suffering without reprieve. Without avenues for cure, dialysis represented a futile intervention.

  To her doting husband, however, dialysis had been her lifeline for decades. During all those long years, during the wearying litany of complications, setbacks, and bad news, he had remained at her side. From his point of view, to stop dialysis meant abandoning his life partner when she needed him most.

  Issues surrounding dialysis are so highly complex that in recent years, specialists have proposed guidelines to discern when dialysis threatens to harm.11 These guidelines recommend against dialysis when our prognosis from other illnesses is poor, e.g., if we have advanced cancer or end-stage cardiovascular disease.12 Similarly, dialysis can be harmful if we require restraints or sedation to tolerate it, e.g., if we suffer from advanced dementia and are prone to pulling out dialysis needles.13

  Dialysis guidelines attempt to improve communication about end-of-life issues. Although over 20 percent of people on dialysis die annually, in one study from 2013 only 30 percent discussed life-sustaining measures with their nephrologist.14 This statistic is disturbing in light of high mortality rates among elderly patients who start dialysis. In one study, among nursing home residents older than seventy years of age, within one year of starting dialysis 58 percent had passed away, and 87 percent suffered a progressive decline in vigor and independence.15 Although chronic kidney failure increases our risk of death and debility, few of us who need dialysis discuss end-of-life care.

  Should We Withhold or Withdraw?

  In the outpatient setting, we have ample time to discuss whether dialysis aligns with our goals of care. In contrast, when kidney failure occurs suddenly, threat to life eliminates the luxury of time. Urgency compels us to make decisions about dialysis quickly, with scant opportunity to carefully weigh the options.

  Conflicts about dialysis in the ICU fall into two general categories: (1) whether to withhold dialysis in a patient with sudden, new-onset kidney injury, or (2) whether to stop chronic dialysis when other illness threatens life. In the remaining sections of this chapter we will explore some questions to better organize our thoughts when dealing with such dilemmas. As always, the priorities of protecting God-given life, acknowledging God’s authority, and extending mercy must steel us.

  Questions to Ask

  While statistics can reduce highly complicated issues to concrete checkpoints, they cannot capture the stories, fashioned by experience and our God-given dignity, that transform an issue from perfunctory to heart-wrenching. Especially in the case of dialysis, an organ-supporting technology that can sustain us for years, our unique tapestry of life experiences, personality traits, values, and medical history should guide us. As we decipher whether dialysis would honor God through protection of life belonging to him, or whether it would constitute cruelty, we must keep the preciousness of each person as an image bearer—
and our hope in the gospel—at the forefront of our minds.

  A few questions can help us navigate the waters. I would encourage discussing these points at length with a trusted physician.

  Is the illness responsible for kidney failure reversible?

  As we have discussed in preceding chapters, the effectiveness of any life-supporting technology depends upon the reversibility of the causative illness. If kidney failure occurs secondarily to a recoverable infection, dialysis may preserve life. In contrast, if it arises from progressive disease without potential for improvement, as in the case of the woman with untreatable heart failure at the start of this chapter, then dialysis may prolong death and inflict suffering without benefit.

  How do other medical conditions influence likelihood for survival?

  A condition that is manageable in an otherwise healthy patient may devastate those of us shouldering serious illnesses. For example, a young man without previous health problems who develops pneumonia has a greater chance for recovery than does one already crippled with advanced diabetes, chronic heart failure, and end-stage emphysema. Guidelines suggest that dialysis harms more than helps those of us older than seventy-five years who at baseline have extensive comorbidities, severe malnutrition, and limited independence.16 In such cases, we should pursue dialysis only with caution.