Decisions about long-term ventilation in children can be clinically contentious and ethically challenging. In this article, the relevant legal, professional and moral principles inherent in such cases are explored. We commend the central importance of deliberation in the assessment of best interests, and propose a practical framework to assist the parent–clinical team to reach decisions in as transparent and equitable a manner as possible.

Background The rate of tracheostomy with invasive ventilation (TIV) for patients with Amyotrophic Lateral Sclerosis (ALS) varies widely. Previous studies have shown that doctors’ values may affect decision-making. There have been no previous international qualitative comparisons of medical decision-making process for TIV or why practice varies.Methods We conducted semi-structured in-depth interviews with 16 doctors actively involved in the management of ALS patients from Japan (n = 7), the UK (n = 5), and the US (n = 4). We used (...) three hypothetical cases to explore decision-making. Conversations were transcribed and thematically analyzed.Results Our data reveals similarities but also marked differences in views between the US, the UK and Japan. Almost all participants stated that they ought to respect patient autonomy. However, their approaches varied. British participants wanted to (and felt that they should) respect patient autonomy, but they also believed that TIV was not a realistic option. US participants were likely to prioritize patient autonomy over other ethical principles, and Japanese participants were likely to limit patient autonomy indirectly. The option of TIV appeared to be heavily influenced by the availability of healthcare resources in all three countries. The high cost, limited availability and difficulty of treatment meant that particularly in the UK and the US, it is challenging to receive TIV even if patients wanted this.Conclusions Our study illustrates how the emphasis on autonomy varies along with variations in the way care is organized in the setting of highly resource intensive treatment and progressive severe disabling illness. There is a need to review elements of the decision-making process in all three countries. This includes the need for transparent, ideally centralized, decision-making guidelines about the provision of TIV. Although we investigated a rare neuromuscular disease, our results will be relevant to other diseases requiring highly resource-intensive treatment toward the end of life. (shrink)

With the aging of the general population and the ability of intensivists to support patients using ventilator support, tracheostomy has become a vital tool in the medical management of critically ill patients. While much of the medical literature on tracheostomy has focused on the optimal timing of and indications for performing this procedure, little is written on the ethical tensions that can revolve around decisions by patients, surrogates, and physicians on its use. This article will elucidate the ethical (...) dilemmas that can arise surrounding the use of tracheostomy in critically ill patients and how ethics consultants and committees can approach these cases to allow resolution. (shrink)

Research has documented the influence of ALS patients families’ attitudes on patients’ decision to accept or reject TIV, a treatment that in many cases will allow them to live long enough to experience locked-in syndrome ; under Japanese law the use of a ventilator cannot be terminated once it is essential to a patient’s survival, so to choose TIV means to choose the possibility of entering a locked-in state. Previous studies have not, however, elucidated the changes in family members’ attitudes (...) that take place after they receive pertinent information about the social systems and services available to them. This study aims to fill this gap by collecting and analyzing patients’ and family members’ narratives. In Japan, about 30% of ALS patients utilize TIV. This rate is much higher than in most other developed countries. Patients’ narratives illuminate the psychological and especially the contextual factors of their decision-making. Many Japanese patients who currently use a ventilator say that their family members encouraged them to prolong their lives through ventilation. These family members have done so because patients are able to use long-term ventilation for only ¥1000 per month, and can also access the latest communication devices and round the clock caregiver services in their homes at very low cost. Japanese caregivers who are supported by social systems and services including communication assistance, empowering factors such as patients’ associations, care provided by people outside the patient’s family, and a public nursing care system are able to encourage patients to decide to use longterm ventilation. (shrink)

Tracheostomy with invasive ventilation may be required for the survival of patients at advanced stages of amyotrophic lateral sclerosis. In Japan it has been shown that a proactive approach toward TIV may prolong the survival of ALS patients by over 10 years by preventing the lethal respiratory failure that generally occurs within 3-5 years of the onset of the disease. Measures to prolong life expectancy without foregoing quality of life have produced better results in Japan than in other developed (...) countries. This ‘Japanese bias’ has been attributed to socio-cultural and religious factors as well as to the availability of material resources in Japan. In this article, we use the concepts of onozukara in kadō and amae to illuminate features of patient care that may contribute to this ‘Japanese bias’. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Five More MinutesKristen Carey RockFive more minutes. How many times have you said the phrase, "I need just five more minutes"—perhaps to finish a note, clean up the kitchen, or read the kids a bedtime story? It is a seemingly insignificant amount of time. But what if you knew that these five minutes were the last five minutes you would spend conscious on this earth? The last five minutes (...) you would spend with your parents and your young children before you would receive a sedative and be transported down to the operating room, where you would be removed from life support and then donate your organs? In a hoarse rasp through his tracheostomy, he kept whispering, "Please. Just five more minutes."This is the reality that I walked into one Friday morning in 2021 as I took over the ICU service at my hospital. I am an ICU doctor at a busy academic center in the northeast and was on the frontlines of our COVID response, including the care of patients who required ECMO (extracorporeal membrane oxygenation)—the last resort for treating patients suffering from severe lung disease.I did not have the privilege of meeting this patient until the morning of his death, but I knew he had been in the hospital for close to three months due to acute respiratory distress syndrome (ARDS) due to COVID-19. On the spectrum of COVID symptoms, this problem is the worst of the worst, and it left his lungs in tatters—so much so that he had relied on an ECMO machine to perform the functions of his lungs for many weeks in hopes that he would either recover or become eligible for a lung transplant. During this time, many hundreds of doctors, nurses, nurse practitioners and respiratory therapists had gotten to know him quite well. They met his father, former wife, and his four school-aged children. They learned of his service to our country as a member of the Air Force and his subsequent devotion to his community as a religious leader and beacon in his community. As he recovered to the point where he was able to be awake and interactive with a tracheostomy, allowing him to mouth words, they also got to know him as a kind and gentle man with a fierce will to live and devotion to his family.Yet, after many weeks of ups and downs, progress and setbacks, it became clear that he could not survive without the help of his ECMO machine. Though it is possible for someone to survive for many months on ECMO, like most forms of life support, it is a bridge rather than a destination therapy. More complicated and invasive than other forms of life support, it is resource-intense and fraught with medical complications. And one day, came the heartbreaking news that due to too many blood transfusions during his illness, he would not be able to receive a lung transplant. He and his care team realized this meant there was no path forward. It came as little surprise to those who knew him that when he realized that he could not live independent of machines or outside the walls of an intensive care unit, his final act would be to help others. He would give others the opportunity for the organ transplant that he so cruelly could not receive.And so, the date and time were set. The transplant teams from other hospitals began to arrive. His final morning on earth would be spent with his family, except for a last trip outside to see the sunshine. With masterful coordination, his ICU room was recreated on the roof atop our helipad. As an army of caregivers attended to his tubes, pumps, and machines, he was able to feel the warmth of the spring wind as the Air Force sent an honor guard of fighter jets to pay their final respects. I watched him smile as the planes flew overhead, unsure if he could see or just hear them. Even though someone had the foresight to place a pair of sunglasses on his face, he still grimaced at the sunlight after months of artificial... (shrink)

Amyotrophic lateral sclerosis (ALS; also called motor neuron disease) is a devastating medical condition that progressively robs patients of their ability to move, speak and eventually breathe. At present, many physicians are hesitant to propose tracheostomy and respiratory support in the terminal phase of ALS. In accordance with the principle of patient autonomy, physicians should respect the right of the ALS patient to accept or refuse any treatment, including mechanical ventilation. Also, in environments where euthanasia or physician-assisted death is (...) legal, such requests can be acceptable. At least two conditions are necessary for full autonomy. To have a claim on full autonomy, people need to have intact cognitive abilities, and to exercise this right they must be able to communicate. In the past, the first condition was in doubt (indeed, overlap with other neurodegenerative diseases is sometimes suspected and some patients with ALS are thought to have associated frontotemporal dementia) and the second was severely compromised in patients with devastating motor impairment (communication being limited to the twitch of a finger or the blink of an eye). In this issue of J Neurol Neurosurg Psychiatry, Lakerveld and colleagues1 investigated cognition in 11 patients with late stage ALS (see page 25). They showed preserved cognitive functioning (ie, language, executive function, intelligence, learning and long term memory) compared with healthy controls. Assessments were exclusively based on a ‘‘yes–no’’ response mode. Because of the absence of verbal and motor communication, the neuropsychological assessment of these patients is complicated, and adapted testing is needed. By using a ‘‘yes–no’’ response mode based on the remaining motor abilities of the patient, this study proves the possibility of assessing patients with minimal motor capacities. (shrink)

We describe a case of parents refusing a tracheostomy for an otherwise healthy newborn. The refusal was not honored because permitting the refusal would have violated state law, which required a child to have a qualifying condition (e.g. a terminal diagnosis, permanent unconsciousness, incurable condition with severe suffering) to remove or withhold life-sustaining treatment. However, this case strained the relationship between the parents and medical staff, who worried about sending the newborn home with a tracheostomy where she was (...) not wanted. While many ethical issues arise in treatment refusal cases like this, we focus on the opportunity for ethicists to help the medical staff reflect on the technological alienation of the parents, which may help foster empathy, reduce moral distress, and strengthen the quality of the doctor-parent-patient triad. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:The 12–Minute JourneyHeather A. CarlsonI met Jack for the first time when he was in the intensive care unit as he was just waking up from his emergent tracheostomy surgery. As I walked into his room he opened his eyes in panic and he struggled to take in a deep breath, fighting the ventilator that was trying to deliver slow steady breaths for him. His face was flooded (...) with fear and the ventilator alarms were blaring. He was surrounded by nurses and respiratory technicians all trying to calm him down, while adjusting the settings on the machine. “Just try and breathe slowly,” they instructed him, though this seemed to be impossible for him as he continued to try and suck in as much air as possible through the new hole in his throat. As his arm flailed out I grabbed his hand and while holding it in mine I just tried to emulate tranquility for him. I thought to myself this is exactly how I would react if I woke up in this condition and could imagine the fear that he was now feeling. While nurses rushed around with suction equipment and the respiratory technicians made adjustments and monitored the results I stood there holding his hand silently praying that he become calm. With all of our support he did eventually relax and find the ability to sync his breathing with the ventilator settings.I am a palliative care nurse practitioner and had been asked to see Jack to help with symptom management and establishing his goals of care as he had recently been diagnosed with head and neck cancer. He had presented to the hospital with complaints of difficulty breathing and it didn’t take long for the emergency room physician to determine that his airway was almost completely occluded by tumor. Jack had actually been diagnosed with this cancer the month before, and had met with a radiation oncologist who planned to start radiation as soon as possible to avoid tumor growth that could impair his breathing. Unfortunately Jack was so anxious and scared about this treatment plan that he never went back to the cancer center. Instead, he stayed in his room in the boarding house that he lived in, smoking cigarettes to calm his nerves. Jack was a recovering alcoholic who had previously been homeless and out on the streets for many years before becoming sober and finding shelter at the boarding house where he now lived. He was a heavy smoker and found that it was one thing that helped to ease his anxiety. The thought of being strapped down to a table with a tight mask over his head while radiation zapped the cancer in his neck had terrified him. His anxiety and claustrophobia had prevented him from following through with his cancer treatment.My initial visits with Jack were spent trying to treat his anxiety as well as the pain he experienced in his neck and head.Because he had undergone a tracheostomy and was now on a ventilator he was unable to speak. To communicate he pointed to a picture board that had common sayings on it, like “I have pain” and “I have to go to the bathroom”. He also used a clipboard with paper and pen and could write what he wanted to say, but this was a time consuming endeavor. Despite this, he was a very animated gentleman who had a lot to say and he wasn’t going to let the loss of his voice impair him. I found myself enjoying my visits with him each day, as he would tell me more about himself. I quickly discovered that he was a very spiritual man and his faith was his inspiration. He wrote on his clipboard “this cancer is actually a gift” and went on to explain that he had been on a fast track toward self destruction, but now feels as though he has been given another chance at life. He spent his time in the hospital reflecting on his life’s journey and how he would be able to help others in similar circumstances. He wrote on his [End Page 192] clipboard multiple... (shrink)

The doctors were frustrated. They could see only two options. Neither was very desirable. They could stop the ventilator and let the baby die. Or they could do a tracheostomy and start preparations to discharge him on a ventilator. The parents wanted a third option. They kept hoping that their baby would get better. The doctors were pretty sure that that wasn't going to happen.

In lieu of an abstract, here is a brief excerpt of the content:What Power Do I Have? A Nursing Student’s Concerns Lead to a Passion for EthicsAnonymous OneThe day began like many in our ten–week rotation, around the large table in the brightly lit ICCU nurses’ station. Report, which was given by the night charge nurse, included information on all the patients on the unit. Since I had cared for A. G. the previous day, I was eager to know how (...) she had spent the night. She had a debilitating neuro–muscular disease known as myasthenia gravis. Placed on the ventilator days before, it was reported that she was likely to be dependent on the machine for life. In the late 1970’s there were very few facilities that accepted ventilator dependent patients. She might be with us for a long time.When I entered her room for the first time, I saw a frail older woman with kind eyes and a warm smile. She was breathing with the help of the ventilator through her tracheostomy tube. I learned through her chart that she had no known family. On the day I took care of her, no one came to see her and she had no visitors the previous evening. She lived in a local long–term care facility and was brought to the hospital after she developed respiratory distress. A. G. was unable to move in the bed due to her condition and required frequent suctioning along with turning and repositioning for comfort.Despite her weakness, A. G. was able to communicate silently by mouthing the words for what she wanted and by nodding and shaking her head. I found her to be quite skilled in non–verbal [End Page 93] communication since it took minimal effort to understand what she wanted, but the activity tired her easily. I had just completed A. G.’s morning care when her physician came in to examine her. After completing his assessment, he stopped and leaned in closely to speak with her. He began asking a number of questions about whether she wanted to spend the rest of her life in this way, on a ventilator. She shook her head. Continuing the line of questioning in different ways, she responded to him. I wondered why he was asking these questions. After seeing her response, the physician asked me to get 30 mg of morphine from the narcotics cabinet. Although I didn’t understand the implication of the request, I complied.While I was retrieving the medication from the narcotics cabinet, the charge nurse came to tell me I was being reassigned to a new admission. When I asked why, she told me she couldn’t discuss it, but asked me to please do what she said. I left her standing there, wondering what was going on. After assisting with the new admission, I went back to see A.G.; her door was closed. When I opened the door, the ventilator tubing hung over the side of the machine. Looking down at the bed, I was shocked to find A.G. had been disconnected. She was dead. In a state of disbelief and panic, I sought out the charge nurse to find out what happened. It was clear that I was not to know. I asked her a number of questions but she adeptly changed the subject and redirected me to other activities. By then it was lunchtime and my instructor had left the unit. I asked to be excused and went to seek her out.When I told my instructor what happened, a look of doubt came over her face. “You think Doctor M. killed your patient? That would never happen.” Although I tried to tell her the story, she too, dismissed me, telling me my story didn’t make sense. I was distraught. An overwhelming sense of dread came over me and I began to cry. She encouraged me to go home, which I did.Happily, I had the weekend to recover before returning to clinical. I never found out what happened to A. G. and neither my instructor nor the charge nurse ever spoke to me about my experience. In fact, it seemed no one believed my story... (shrink)

Born at 24 weeks gestation, Baby G now lies in a neonatal intensive care unit two months post-birth. He has pulmonary hypoplasia, congenital scoliosis, and swallowing issues that will require placement of a feeding tube, and bowel dystonia that interferes with his ability to absorb feedings. Shortly after birth, he experienced a cardiopulmonary arrest and now has obvious neurological impairments. As a result of incomplete development of his lungs and severe chronic lung disease, he cannot breathe on his own. Because (...) of his chronic respiratory failure, tracheostomy and long-term assisted ventilation was offered as an option that would allow him to be discharged from the acute care setting. However, his congenital.. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:UnbefriendedJean Watson“Can you be a friend to someone who needs one right now?”That probably wasn’t the question that our hospital clinical ethicist asked, though that is what I recall. It sounded like something my mother would encourage me to do. It sounded like something I would like to do. It sounded easy. It was none of that and so much more.Two weeks earlier, a man was found down in (...) his apartment, unresponsive. He had had a stroke. He was hospitalized in our ICU on a ventilator. He had no family or friends to speak on his behalf. Decisions needed to be made. Should he undergo surgery to place a tracheostomy and feeding tube to continue his life?The hospital hired a private investigator who performed yeoman’s work, trying to find someone who knew this man, someone who might be able to share information about his values so that we could act in accord with them. Remarkably, no one was found. The patient had been retired from work for more than a decade. Though he rented an apartment, his landlord did not know him. No family was discovered. No friends came forward nor were identified. No medical records were uncovered. He had not seen a doctor or visited a clinic or hospital in the area until now. He was a solitary person, a human being without close relationships. His apartment was unkempt; beer bottles were strewn about the place.The clinical team requested an ethics consultation. Though the hospital does not have a formal policy for decision making at moments like these, our ethicist is well-versed in a variety of ways these circumstances are handled. Sometimes a treating physician functions as both the attending and a surrogate. This can be fraught with potential conflicts of interest. Unconscious bias could influence one’s thoughts about the value of a life and the cost to sustain it. Sometimes the attending provider presses on with therapies regardless of the likelihood of successful treatment. This choice fails to acknowledge individual autonomy. It fails to weigh the suffering required to live another day. It sidesteps the thorny issues that are discussed everyday between providers, patients, and loved ones.The ethicist gathered a group to serve as informal surrogates for this patient. Three of us agreed to act as friends and decision makers for this man, helping the treatment team determine next steps. The ethicist provided a few rules and much oversight.We met for a family conference. The intensivist and neurologist shared the diagnosis and treatment that the patient had received. They detailed information about the decisions that needed to be made. The patient’s nurse, the social worker, and the spiritual care intern attended the meeting to watch the proceedings and contribute to the discussion. We three, the patient’s friend group, were invited to ask questions. We had some.I am a hospitalist, an internist working in a hospital caring for patients. I have done this work for 25 years. I know the intensivist and the neurologist well. We have worked together, caring for many people over the years. My two surrogate partners were a nurse and a chaplain. The nurse had decades of professional experience, including in the intensive care unit. The chaplain was experienced in her work and comfortable with the challenges that arise in a hospital.The three of us had a robust discussion. I shared what most patients tell me when I ask about resuscitation status. “I don’t want to be kept alive on machines,” or “I don’t want to be a burden.” The ethicist gently reminded us that we were tasked with making a decision on behalf of this person, irrespective of what others would decide for themselves. It was challenging to tease out clues [End Page 10] that could guide us to what this man might choose for himself.Because of the location of his stroke, the patient was not expected to regain consciousness. He had been off sedation for more than a day and had not woken up. For the rest of his life, he would be institutionalized, ventilator dependent, and sustained with nutrition administered via a... (shrink)

Some physicians refuse to perform life-sustaining interventions, such as tracheostomy, on patients who are very likely to remain permanently unconscious. To explain their refusal, these clinicians often invoke the language of “futility”, but this can be inaccurate and can mask problematic forms of clinical power. This paper explores whether such refusals should instead be framed as conscientious objections. We contend that the refusal to provide interventions for patients very likely to remain permanently unconscious meets widely recognized ethical standards for (...) the exercise of conscience. We conclude that conscientious objection to tracheostomy and other life-sustaining interventions on such patients can be ethical because it does not necessarily constitute a form of invidious discrimination. Furthermore, when a physician frames their refusal as conscientious objection, it makes transparent the value-laden nature of their objection and can better facilitate patient access to the requested treatment. (shrink)

Martin was a twenty-nine-year-old anthropologist working on animism in Siberia when a bear leaped on her. He raked her with his claws, put her head into his mouth, and was about to crush her skull when she stabbed him with her ice axe. He loped off into the woods, carrying part of Martin's lower jaw and, if Martin is right, half of her soul—but leaving half of his soul in return. Martin lay bleeding in the snow. She managed to fashion (...) a tourniquet that slowed the bleeding from her leg. Miles away, a friend was fishing. He fell backward and blacked out. When he came to, he knew that something bad had happened to Martin.But was it bad?It certainly seemed so for a while. A Russian helicopter lifted her to hospital. Her wounds were treated, but the hospital seemed more brutal than the bear. She was strapped to the bed, unable to move her arms or legs. She wheezed through a tracheostomy tube. A malevolent nurse rammed food agonizingly into her with a syringe. Copulating doctors and nurses moaned and grunted in the side room next to her. Her jaw was roughly screwed together. On the plane back to France, the low cabin pressure reopened her scars. Her weeping mother dabbed at the blood with a tissue. In the French hospital, Martin took off her bandages in front of the mirror and wept “for my bear, for my old, lost face.”She had been invaded. She was now half-human, half-bear, a Siberian friend had told her: “He didn't want to kill you, he wanted to mark you. Now you are medka, she who lives between the worlds.” To be healed, she had to forgive the bear, for she would not otherwise forgive herself. At night she went “underground” to “speak to my bear.” Her head was “a ball scored with swollen red-claw marks and sutures. I am nothing like myself anymore, and yet I've never looked more like my own spirit; it has been imprinted on my body.”The invading bear had created a bridgehead into her. Other entities followed. The most immediately dangerous were bacteria and surgical scalpels. The surgeons did not know what they were toying with: “My body has become a territory where Western surgeons parley with Siberian bears. Or rather, where they try to establish communication.”The surgeons never did establish communication, and so their sort of healing would not work. Martin knew that she would only find healing in her “lair” in the Siberian forest, from those “who know bears and the questions they bring with them, who still speak with them in their dreams, who know that nothing happens by chance.” And so back she went.There was no epiphany. But there was the quiet healing that comes from recruiting all the agencies in the tundra; in distilling agency itself and dripping it over her wounds. And asking the right questions can heal too. The right questions are questions that are too big for answers.What is this book about? Martin is clear that what did not happen was that “a bear attack[ed] a French anthropologist somewhere in the mountains of Kamchatka.” What did happen was that “a bear and a woman [met] and the frontiers between two worlds implode[d].... Mythical time meets reality; past time joins the present moment; dream meets flesh.”Eye of the Wild poses an unnerving set of fundamental questions about what it means to say, as we all blithely do: “I am”—about how many souls we can accommodate, how we can broker a respectful or at least tolerable conversation between them; about our porosity to the cosmos we comfortingly assert is out there. This book is plangent, frigid, and chilling. It is a mosaic of jagged fragments that, viewed in the right light, perhaps add up to the scarred face of a young woman, all the lovelier for the scars. Yet the fragments do not add up to a proposition, for this is a book about what happens when you are brave enough to go to a place where no proposition could ever land. (shrink)

For a minority of children managed in the NICU, there is a need for more complex technologic assistance in order to sustain life, mitigate a more chronic debilitation from a pervasive life-limiting condition, or provide a bridge from life-sustaining therapy to a more semi-permanent treatment such as organ transplantation. This chapter will address two major types of technology assistance for infants and children—tracheostomy and assisted home ventilation, and dialysis—and the myriad complications and considerations that they raise. Some attention to (...) why clinicians may be so inclined to impose technology as a solution to life-limiting conditions will be noted, as well as why some parents may seem to insist on pursuing technology. (shrink)

For a minority of children managed in the NICU, there is a need for more complex technologic assistance in order to sustain life, mitigate a more chronic debilitation from a pervasive life-limiting condition, or provide a bridge from life-sustaining therapy to a more semi-permanent treatment such as organ transplantation. This chapter will address two major types of technology assistance for infants and children—tracheostomy and assisted home ventilation, and dialysis—and the myriad complications and considerations that they raise. Some attention to (...) why clinicians may be so inclined to impose technology as a solution to life-limiting conditions will be noted, as well as why some parents may seem to insist on pursuing technology. (shrink)

This article addresses a common yet rarely discussed aspect of hospital care—a pro-active approach to ethical dilemmas. Potential ethical conflicts often present warning signs to clinicians, analogous to the warning lights on a car’s dashboard. Using a recent case study, a commonly encountered clinical decision—a conflict about whether to terminally extubate a critically ill patient versus whether to offer a tracheostomy— we describe a pro-active approach to ethical conflicts and outline three learning objectives: (1) the need for a robust (...) understanding of the term “futility,” (2) the need for an appreciation of the various and often conflicting interpretations of “improved/improving,” and (3) the need to understand the challenges of surrogate decision making. (shrink)

James is a seventy‐two‐year‐old man with end‐stage dementia who was transferred from another hospital. At the time of transfer James had sepsis from two multidrug‐resistant organisms, respiratory failure requiring ventilatory support, renal insufficiency, pancytopenia, and hypotension requiring vasopressors. He has severe contractures and foot drop, has a feeding tube, and has been nonverbal for several months. His son, Paul, is requesting full code and treatment focused on recovery despite James's extremely poor prognosis.Paul is James's only child, and James's wife is (...) deceased. Paul says he has the “gift of prophecy” and knows for certain when God is speaking to him. “God,” he says, “doesn't lie.” He says that he and his father spent years preaching together and have witnessed many healings. He believes that they are being “rebuked” because at a time when his father was too tired to travel much, they held fewer revivals and did not save enough souls.James's condition has worsened slowly. He has almost no urine output and does not breathe over the ventilator. He is extremely volume overloaded; his toenails have bloodied and popped off. By hospital‐day twenty‐one, he had only corneal reflexes. The medical team is troubled; if James is to stay on the ventilator, he will need a tracheostomy, but this would only further prolong what has already been an agonizingly prolonged dying process.Paul continues to pray for his father to get up. (shrink)