It all happened with such numbing swiftness. Just two weeks after his predawn agony, Ponzo’s medical options were dwindling. As his hope for life faded, replacing it was not the peaceful certainty of death but the terrifying unknown of dying. His body could not tolerate more surgery. Although poisonous wastes were building up in his system, dialysis had to be halted because it triggered his angina. He was slipping in and out of consciousness; soon his lungs would be no more able to gather in oxygen than a punctured balloon. Ponzo’s wife of 31 years was summoned to a tiny “family room” outside the MICU, where three doctors and a nurse waited for her. “Is he dying.?” asked Adeline Ponzo, 67, as soon as they sat down. “It looks pretty glum,” replied Dr. Joel Snider, Ponzo’s personal physician. For the next 20 minutes, the doctors delivered the same fundamental message in many different ways: without massive and heroic intervention, her husband would almost certainly die within 48 hours. They counseled her not to request any extraordinary measures that, as they put it, would only prolong his misery. Grasping for the ungraspable, Mrs. Ponzo asked, “Do you mean just let him go?”
The doctors explained that there were no reasonable medical options. A ventilator to breathe for him, drugs to support his blood pressure, electric shocks to jump-start his sputtering heart might keep him alive for another week or so. But to what end? The best course, they said, was to keep him comfortable and permit him a peaceful, dignified death. “We’ll do everything short of ’everything’,” promised Dr. Scott Weiss, a pulmonary specialist and the attending physician on the MICU that month. Weiss, whose candor and forcefulness at times make him appear brusque, assured her that it was the right decision. “It may be for you, doctor,” Mrs. Ponzo said softly, more in sorrow than in anger. “But he’s all I have.”
Early the next morning, the cloud seemed to lift from Ponzo’s mind, and for a brief few moments he saw his wife, and perhaps his end, with a calm lucidity. They exchanged final “I love yous.” “I just held him in my arms, " Mrs. Ponzo said. “I took off his [oxygen] mask-he didn’t need it anymore-and held him and held him until his final breath.”
It was a good way to die, as dying goes, for sometimes it goes horribly. “A peaceful death,” Weiss said softly as he led interns and residents past Ponzo’s closed door on morning rounds a few hours later. It could even be counted a sort of success. Ponzo did not suffer the outrage of “people sticking needles in [him] and thumping on [his] chest. That’s a violent and brutal way to depart this world,” said Weiss to the interns and residents gathered around, and to a reporter who would spend 21 straight days in the unit, seeing and hearing how doctors, nurses, patients and relatives wrestle with the siren of high-technology medicine that offers both hope and peril. If there is a philosophy that unites Beth Israel’s staff, it is that just as tubal feeding, or surgery, or a ventilator is a medical option, so is death. “You have a responsibility not to drag out the dying,” says Weiss. “I don’t believe in euthanasia. But I don’t think we’re here to do things that are inappropriate. Some doctors think that once you invoke the high tech, you can’t get off the train. But you ought to be able to opt out.”
The option that more and more patients, and their families, demand is to leapfrog dying if death is all that awaits. While many people choose death, no one chooses dying. Although there are no national statistics, anecdotal evidence suggests that more than half of hospital deaths follow a decision to limit or withhold life-sustaining treatment. This is not suicide, or euthanasia, for both of those mean ending life. It is, rather, a desire to end dying, to pass gently into the night without tubes running down the nose and a ventilator insistently inflating lungs that have grown weary from the insult.
Yet so often the life leaves few clues to how the dying should come. The Ponzos had never discussed what to do in such a situation, even though Domenic had a history of diabetes, chronic pulmonary disease, high cholesterol, obesity, peripheral vascular disease, hypertension, high blood pressure and angina. A pack-and-a-half-a-day smoker for 50 years, Ponzo, 69, experienced shortness of breath after walking a single block. Adeline Ponzo, who had worked as a medical assistant for the past years, would sometimes raise the subject of death and dying, but her husband would shush her. “If I brought up anything to do with it, he’d just say,‘I don’t want to discuss it.’ He’s not a weak-type person, but he just couldn’t discuss this type of thing. "
But there is a danger in not discussing. If the patient and family do not clearly state their preference doctors are obliged by Hippocratic oath to err on the side of intervention. One distinguished physician who became a patient in the unit requested they do “everything possible”-except snake tubes down his throat and into his veins. Since “everything possible” includes intubation almost by definition, the MICU staff followed his first request without caveat. He died two weeks later. Tubes stuck out of every orifice of his body.
Experiences like that push the MICU staff to help family members reach the most difficult decision they will ever face. Their mandate is to spare the relatives the sense that they bear the entire burden of the decision and its outcome. “It’s important not to say, ‘What do you want?’” says Weiss. “It’s not fair. Deciding is a heavy burden to lay on someone,” and one that even professionals for whom death is an intimate acquaintance have trouble shouldering.
Sometimes the staff gets lucky, as luck is measured in the MICU. Sometimes they have an exceptional case, in which a fully alert patient questions a prolonged dying. Helen Reynolds, 63, had undergone operations in January and April to repair and then replace a heart valve that was not permitting a smooth flow of blood. But by May her feet had turned the color of overripe eggplants, their mottled purple black an unmistakable sign of gangrene. The consensus was that, at best, she would emerge from Beth Israel’s MICU a “pulmonary cripple,” almost surely sentenced to live out the rest of her life in a chronic-care facility, perhaps forever yoked to a ventilator. But Reynolds had no intention of giving up. Leashed to the softly whooshing ventilator, she was prepared to offer her very flesh if that would appease Thanatos. In June she chose to have first her right leg, and then her left, amputated in hopes of stabilizing her condition. The doctors were skeptical about the surgery, but deferred to her wishes.
The gutsy decision was very much in character. Reynolds’s first husband had committed suicide by strangling himself in 1971. To support two teenage daughters still living at home and to hold onto her home in Norfolk, Mass., she worked three jobs: in a paint shop at a Corning Glass Works plant and waitressing at two local restaurants. She had to stop working when her heart problems began, in 1978. Between the first and second heart operations, she lived in a rehabilitation hospital, oxygen tank beside her and, despite chronic breathing problems, cheerily chatted with her visiting daughters and 83-year-old mother until long after she should have been resting.
Even when the April heart operation at Beth Israel forced her onto a ventilator, she never withdrew from what her life had become. She delighted in the MICU nurses doing her hair and makeup. When doctors turned down her television so they could talk during their morning rounds to her room, she gestured for it to be turned back up immediately after they left. In May she and her family celebrated her 63rd birthday, with balloons, flowers and a two-foot-tall HAPPY BIRTHDAY FROM ALL OF us card, there on the ninth-floor MICU with its picture-window view of Boston’s western suburbs. She occasionally watched videos that the MICU nurses brought in. It was during one incongruous double feature-the elegant “Room with a View” and the teen dance flick “Shag”-that nurse Ruth Scanlan told her, “Helen, it really stinks. You know if you don’t want all this stuff done, we can stop it. We can let nature take its course.” Reynolds shook her off. She knows what I mean, Scanlan thought. She wants to live. Asked how she so stoically weathered every indignity done to her, Reynolds replied simply, “I want to get home.”
But then Reynolds uncharacteristically began talking about her pain. On that Sunday afternoon in June, a nurse beckoned intern Dr. Randall Evans. Evans, a graduate of the University of New Mexico Medical School who planned a career in the critical-care field, was immensely popular with the nursing staff for his cordial and sympathetic manner. But, unlike the MICU nurses, he had difficulty reading Reynolds’s lips (the ventilator made it impossible for her to speak aloud), and asked her to write down her request. Laboriously, she scrawled 16 words on the note pad: “I have decided to end my life as I do not want to live like this.”
Evans asked her if she knew what her decision meant. She pointed to her head to indicate she wasn’t crazy. Asked if she might change her mind, she shook her head vehemently. As Evans prepared to leave, Reynolds mouthed a final wish: “I don’t want to make a big deal out of this.”
Reynolds broke the news to her daughters. Maureen Labrie emerged from the room in tears. “I was surprised she stuck it out so long,” she said. “I think she hung on more for us than herself.” Gayle MacPherson, her eldest daughter, listened and asked if she wanted, to see a priest. Reynolds, apparently afraid that the priest would try to change her mind, declined firmly. “I’m not trying to talk you out of it, " Gayle assured her. “It’s been your decision all down the line. Whatever you decide is OK. That doesn’t mean we won’t be sad, but it’s OK. I don’t want you to have the anxiety of worrying about if we’re going to be upset with you. I don’t blame you.” Asked the next morning how it had gone with her daughters, Reynolds mouthed, “Not too well. "
Yet her daughters had expected the decision weeks before. When Reynolds chose to have her second leg amputated, Gayle recalls, “I thought at this point she would say, ‘Enough already, I’m tired.’ I wouldn’t blame her. I’m tired too. But if she wants the surgery, that’s fine. We’ll support whatever she wants.”
The doctors understood Reynolds’s decision, but they could not grant her wish right away. “We’re going to string this out a couple of days,” intern Evans told the medical team. “I want her to tell me the same thing many days in a row.” Explained Dr. J. Woodrow Weiss, director of the MICU, “We need to be certain this isn’t a whim.” Reynolds did reiterate her decision-countless times-to Evans, to Weiss, to her family and to psychiatrist Eran Metzger. It was his task to determine whether Reynolds was competent and whether her decision was based on “appropriate” rather than “inappropriate” depression.
On Thursday evening, Woody Weiss, Evans, Metzger and Reynolds’s primary nurse Judith Ayotte met with her three daughters, mother and a granddaughter. “What she has told us basically is that she doesn’t want to be kept alive, that she doesn’t want to continue going through all that she’s gone through,” said Weiss. “Our feeling both ethically and legally is that we should respect her wishes.” The best way was to remove her from the ventilator, lines and tubes. The principal concern was pain and discomfort. “She told me she’d just like to go to sleep,” Gayle said. “She’s tired. She’s had it.” The doctors said they would give her mother morphine for pain. The only question left was when to remove the ventilator. Reynolds rejected out of hand her family’s suggestion that she might like a few more days to say her goodbyes. Her patience and endurance were at an end. She was ready.
“I want you to know I admire you a great deal,” Evans told her as he prepared to remove the ventilator on June 20, four days after her imploring note to him. “We’re going to help you do what you want.” “Thanks for listening to me,” Reynolds whispered. The family gathered round. “Life won’t be the same without you,” her mother said. In a few hours Reynolds drifted off to sleep, breathing easily. Her family headed home.
Reynolds was undoubtedly the most surprised and unhappy person of all when she awoke the next morning. She managed a laugh at the bitter irony, and clung to life for another three days. She died early on Monday, June 24. It had taken a little more than a week for her wish to be granted.
The hovering presence of death breeds a steely attitude on the MICU. Nurses and doctors regularly declare that they want “DNR” (Do Not Resuscitate) incised on his or her chest. “But until it’s you or yours,” says Miriam Greenspan, chief nurse, “I’m not sure you really know.”
Even patients, or families, who think they know often do not. The most common shock is finding out that not deciding is, in fact, deciding: if a family or patient does not refuse a respirator, feeding tube or other life-sustaining measure the doctors can not and do not withhold it. And few people are prepared for what follows. “Too often,” says Greenspan, “it’s only after we’ve [started life support] that the family truly understands and says, ‘Oh my god! That’s what “do everything” meant’.” That’s why the MICU staff regards “living wills” as less than perfect: these documents stipulate what a patient will and will not want, but they cannot anticipate the grim complexities of disease. Perhaps a despised ventilator will be needed for only a few days, perhaps tubes for only a few hours. It may be better to designate a health proxy, someone who understands the patient’s attitudes toward dying. The proxy is charged with making medical decisions when the patient cannot, and can weigh the specific circumstances of the illness and the choices available. The proxy’s legal standing varies from state to state. But designating one may avoid the added tragedy of death bed fights. Says Weiss: “The daughter who’ been visiting the father every day for years might say, ‘I want to do what’s best for him.’ The son who hasn’t visited in five years flies in and says, ‘I’m not going to let you kill my daddy’.”
Sometimes the doctors themselves do not know-not about whether death will come, but when. Richard (not his real name) certainly seemed to have almost no time left when he returned to Beth Israel in June for the 41st time since March 1988. An alcoholic, Richard suffered from cirrhosis of the liver and its consequence, esophageal varices. In this condition, blood is unable to flow through the liver and detours in excessive quantities through the esophagus. There, blood vessels and veins unable to handle such a flow continually rupture.
That’s why Richard kept showing up at Beth Israel. He had received enough transfusions to refill a man 18 times. He had also received the standard treatment for varices: a tube down the esophagus releases an agent that stops the bleeding. When his throat could not tolerate the tube, Richard began receiving intravenous pitressin, a drug that reduces the flow of blood to the overtaxed esophagus. Then he would go home until the next rupture.
Their recidivist patient was amiable enough-soft spoken, a man who loved his dog and his flower garden behind his home a short distance from Beth Israel. He lived with a roommate, who visited Richard faithfully during his stays at Beth Israel. At the MICU Richard relished his favorite lunch-mounds of vanilla Haagen-Dazs washed down with ginger ale. He said he’d stopped drinking a few months before, but still the staff found it hard not to view the fortyish lab technician as a victim of himself. In a prominent big-city teaching hospital like Beth Israel, medical care is plentiful; it’s sympathy that has to be rationed.
Now medicine could not offer much, either. Gastroenterology fellow Dr. Deborah Proctor broke the news to Richard on a glorious Friday afternoon, as sunbeams danced on the off-white linoleum floor. They had run out of options, she said. Surgery to insert a shunt in his liver to carry blood through was out of the question; the cirrhosis had so debilitated him that he would likely die on the operating table. He had earlier tested positive for HIV, which causes AIDS; that made him a poor candidate for surgery. “Richard, there are no options for you left, “Proctor told him. “We can’t keep pouring blood into you. You’re going to die.”
His face betrayed no emotion. “If that’s what’s going to happen, that’s what’s going to happen,” he finally answered. Proctor said she needed his consent for a DNR order. He agreed. She asked if he accepted that there would be no more transfusions or pitressin. If his esophageal veins ruptured again, the staff would not staunch the bleeding. He would quickly lose consciousness. He would bleed to death.
Richard understood. He acquiesced.
“I do mind dying,” Richard said soon after his talk with Proctor. “But I haven’t any choice. They explained it all to me, and there wasn’t any other decision they could make. My life has come to a point where it can no longer succeed.” The doctors, too, emphasized the uselessness of it all. “It’s a question of futility,” said MICU resident Dr. Ira Oliff. “We don’t keep corpses on ventilators either.” Scott Weiss agreed: “He’s had a good run for his money.”
Richard spent the weekend preparing for death. His roommate came by with pictures of Richard’s home, dog and garden, as if to distract his eyes from the pitressin IV whose imminent removal might kill him. They each knew that such a moment might come, discussed it. “I guess we should have,” he said. “But it’s his decision, and I support it.” Richard himself had no desire for long goodbyes. There was no one else he wanted to see. He was estranged from his family. “If we’re going to do it, " he said, “let’s get it over with. "
Monday dawned gray and overcast. Doctors removed the IV. Richard did not look like a man consumed with his own mortality. He watched Regis Philbin and Joan Rivers from the 12-inch screen jutting out from the wall. The bleeding did not resume.
Later that week Richard was transferred out of the MICU. He did get more blood-two units-but not to replace any lost by hemorrhaging: it was to boost his red-cell count. He was going home. Ten days after his death sentence, Richard returned to his roommate, his garden and his dog.
It was a sobering reminder of medicine’s fallibility. Though there was still little doubt that Richard did not have long to live, when it comes to predicting how long, “we’re not that good and we never will be,” said Woody Weiss. Richard knew that he would be back at Beth Israel. “I just hope it’s not too soon,” he said. He had been delivered from dying, but death still beckoned. The next time, Richard would have to decide anew whether to follow.
