Managing Our Mortality: Why Some Terminally Ill Choose Death

New technologies now make it possible for many terminally ill patients to extend their lives. Here's why some decide not to.

The evidence of Jim Reales is everywhere. His signature is on the paintings on the walls, his mineral collection covers the shelves, his face fills the photo albums. His presence seems to fill this room. But Jim is gone. He died of heart failure nearly two years ago.

He might have been able to dodge that fate. Six months before his death, doctors told him they could extend his life. But the extra time would have come at a price.

It would have meant allowing a surgeon to make an incision from below the top of his breastbone down to a spot several inches above his belly button. It would have meant having his breastbone sawed in two, the halves spread with a retractor so the doctor could see his heart, having a cord tunneled under his skin, and more—all to enable surgeons to implant a partial artificial heart in his chest.

In the best-case scenario, he would have been out of the hospital in a week or two. In the worst (assuming he survived the surgery), the hospital would have become Jim's home, his inpatient stay dragging on for months and months, with more organs deteriorating as doctors hurried to save them, the tangle of tubes growing. Dialysis to save his kidneys. A hole in his neck and windpipe, accompanied by medical equipment, to keep him breathing. A feeding tube for nutrition.

Jim said no. The risks were too high; the anxiety of knowing his life would depend on the functioning of some device was too much. He didn't know which patient he'd be, and he didn't want to find out.

To be offered a chance to live in the face of terminal illness is a rare thing. Rarer still is to be offered that chance and to opt to die instead. But neither will likely remain uncommon for long. Already, we can replace a dying heart with a live transplant or support it with a mechanical pump. Kidneys can be swapped, or rendered obsolete by an external machine that does the job. Cancer can be beaten, removed, or suppressed again and again and again.

Indeed, gone is the time when a single malfunctioning organ meant a quick descent into darkness. Now, a person can be kept alive long after numerous parts of his or her body are functionally dead. For many people—and soon for many more—technology has made the timing of death a choice. We will no longer be taken. Rather, we will decide when to go.

But some doctors warn that unless we get as good at letting go as we've become at holding on, these tools can become traps. Without the knowledge, and the emotional wherewithal, to make informed decisions, very ill patients can wind up prolonging their lives by default—and sometimes wishing they hadn't.

"How do people accept that dying is part of life? How do you get to that philosophical place?" asks Dr. Dan Matlock, a geriatrician at the University of Colorado School of Medicine. "When are the benefits too small to be worth the costs? That is the discussion we probably need to have. And that's a hard discussion."

Americans are struggling with these questions and options already. The last few months of life in the United States are often a flurry of frequent hospital visits and intensive-care stays. About a quarter of Medicare dollars are spent on the last year of life. The majority of people in the United States die in an institutional setting, even though most say they'd rather die at home. We are living longer. But for some of us, our last moments aren't what we wanted.

VICIE REALES, Jim's wife of more than 15 years, remembers the beginning of the end for Jim.

One Sunday in July of 2007, Jim and Vicie headed to Golden Gate Canyon State Park to hike, hoping to shed some of the extra pounds they'd both put on. In the middle of the trail, Jim, in his early 50s, at 5 feet 10 inches tall and roughly 285 pounds, sat down. He smoked a cigarette and told Vicie he had excruciating pain in his arm. He stood, walked up a hill, and then stopped.

"I can't go any farther," he told his wife.

The couple whipped out their phones to call 911. The calls wouldn't go through. They were too deep into the mountains. A few minutes later, a pediatrician and his wife and son-in-law walked by. While the son-in-law went running for help, the doctor stayed with Jim. Soon, the park rangers arrived; then the paramedics came, tested Jim's heart's electrical activity, and called for a helicopter to fly him to what was then St. Anthony Central Hospital. A shaken Vicie followed in the couple's car, and when she got there, a doctor said her husband wouldn't live through the night.

"You're like you're in a different world," she says. "It doesn't seem real. None of it seems real, because just a few hours ago, you're out on the trail hiking, and everything in your life is fine. Just your whole life changes so quick."

In the hospital, doctors used a small mesh tube called a stent to open and restore blood flow to a narrowed coronary artery, and hooked Jim up to a machine to help his heart pump. This helped save his life, though he never fully regained his strength. Suffering from advanced-stage heart disease, Jim lost interest in painting and jewelry-making, rock-collecting and fishing. He tried working again, but his heart continued to fail, forcing him to go on disability and leaving him most days in front of the television.

It wasn't the life Vicie and Jim remembered. A photo book that Vicie made after his death shows Jim as an 11-day-old baby and as the man he became—a creative, competitive outdoorsman who thanked his wife repeatedly for the care she gave him in his waning years. He enlisted in the Navy and later moved to North Carolina, where he worked at Circuit City, owned a gem and mineral shop on the side, and raised his two sons. After several failed marriages, he met Vicie over a card game at a friend's home. They married on Valentine's Day in 1996, so he'd never forget their anniversary, Vicie says with a laugh.

Three years later, they quit their jobs, and Vicie took all of the money out of her 401(k). The couple bought an RV and began traveling to gem and mineral shows across the United States.

(Yevgenia Nayberg)But after Jim's heart attack, his energy was gone, and his days were consumed with a succession of hospital visits for pneumonia and various infections. His failing heart compromised his immune system, and complications from diabetes took the possibility of a heart transplant off the table. Vicie cooked his meals and helped him bathe, her life revolving around his needs.

Time was running out. But then, doctors came to Jim with a potential solution.

It's one of the most aggressive life-saving techniques in medicine. The left ventricular assist device, or LVAD, is a medical marvel that supports a failing heart, assisting with the job of pumping blood through the body. When it was first used successfully, in the 1970s, the LVAD was a stopgap to keep a patient alive in hopes of a heart transplant. But over the ensuing decades, the technology evolved, says Dr. William Cohn, director of the Texas Heart Institute's cardiovascular research lab. The pump shrank from the size of a coffee can to about the diameter of a flashlight battery.

In 2001, a study determined that the LVAD could be a permanent fix for patients with severe, end-stage heart failure. No longer would they need to be healthy enough for a heart transplant. They could go through open-heart surgery, have the device implanted, and keep it for the rest of their lives.

In hospitals, it's not uncommon for a machine to take over for a damaged or dying organ. Ventilators help patients breathe. Dialysis machines remove waste and chemicals from the blood. Some hospitals also have a piece of medical equipment called an Extracorporeal Membrane Oxygenation machine, or ECMO, which supports the lungs and sometimes the heart. A pump inside the machine works with gravity to push blood through the tubes. The blood flows into the machine's mechanical lung, which takes carbon dioxide out and puts oxygen in. Right now, while this technology helps patients breathe, it confines them to a hospital bed. But researchers are hoping that won't always be the case. Funded by the National Heart, Lung, and Blood Institute (NHLBI), a group of researchers are working to create an LVAD for the lung—a portable, wearable version of the ECMO.

"All of us hope, as we get better at making the devices, using them clinically, that we're going to follow the same path as the LVAD world, where they can become destination-therapy devices for people who have end-stage lung failure," says Dr. William J. Federspiel, the director of the medical devices lab at the McGowan Institute for Regenerative Medicine in Pittsburgh. But at the moment, there's another focus, says Dr. Andrea Harabin, program director for the NHLBI's acute lung-injury and critical-care program. First, researchers are concentrating on a project to be completed within five to 10 years: a portable artificial lung that could be slung around the shoulders like a five-pound backpack or attached to the waist, allowing patients to get out of bed and walk around.

Federspiel hopes such a device would become a permanent fix for patients with end-stage lung failure who don't qualify for a transplant. Those patients could go home and live their lives, as those with the LVAD do, but with an artificial lung and oxygen tank attached.

That's astounding progress. But for other illnesses that afflict the organs, fixes are further away. Take the liver, for example.

"The liver literally does over 500 different things," says Dr. Duane Nash, chief business officer and executive vice president for a U.S. biotherapeutic company called Vital Therapies. "And we don't have machines or pills that are dynamic enough to replace that function."

Vital Therapies has made a bioartificial liver-support system, called an ELAD, to take over liver function temporarily for those with acute liver failure—meaning a reversible ailment that occurs suddenly, due to a virus, toxin, autoimmune disease, or, more commonly, alcohol.

"Often, these patients are desperately ill," says Dr. Winfred Williams, associate chief of the Division of Nephrology at Massachusetts General Hospital, which is one of more than 50 hospitals testing the device. "This really is an end-of-life therapy."

To be offered a chance to live in the face of terminal illness is a rare thing.

Clinical trials are ongoing, and the hope, Nash says, is for the company to submit its findings to the Food and Drug Administration by the end of next year, and to commercialize the ELAD by early 2017. The treatment looks like this: A patient with a damaged liver is hooked up to a shopping-cart-sized machine that uses human-liver-derived cells to support the organ and let it rest for several days. After treatment, the patient is unhooked with the hope that the liver will have fully regenerated, Nash says.

That's the primary focus. But it's possible that this bioartificial liver could become much more than an intensive-care-unit treatment. In the future, Vital Therapies could decide to look at patients with chronic liver disease, Nash says, and attempt to use the device as a bridge to a transplant or as a permanent treatment. And since the ELAD is the only technology of its kind in the clinical arena for the organ, it could be the best hope for a mechanical "cure" for patients with end-stage liver failure.

"I think this is a huge void that needs to be filled, and that this is a step along the way," Williams says.

Even medical professionals are awed by what is now possible—and what might soon be. "Think about this," says Dr. Daniel Herr, chief of surgical critical care services and director of the cardiac surgery unit at the University of Maryland Medical Center. "I can put all these machines in series. So, I can put an ECMO machine for your heart and your lungs. That's one machine. I can put the dialysis machine hooked up to that, and I can hook up this new ELAD machine to all of it, and I can literally have your blood run through three machines and replace four organs: the heart, lung, liver, and kidney."

Is this where medical care is headed?

"Well, probably, some day," he says, then pauses. "Then we shrink it down and make you a bionic person, right?" he offers with a laugh.

Williams and Federspiel can even envision a time when such devices could be bridges to transplants of organs grown specifically for a patient in need, using his or her own cells. "We are not at the point now where we can just take organs off the shelf, but these technologies are moving in parallel, and I think it is a huge potential," Williams says. "And we're just at the beginning."

Until then, however, such mechanical advances aren't cures. They offer a few more months, even a few more years. But what are those months or years really like for the patients and their families?

Dan Matlock has seen what happens when these technologies are used reflexively.

Late one evening about 10 years ago, a man in his mid-70s was admitted to a Colorado hospital where Matlock, then a second-year resident, was making the nightly rounds. The patient's heart and kidneys were failing, but he didn't want much medical care. Matlock gave the man some medicine to ease the pain and headed home.

The next morning, Matlock swung by the patient's room. The man was gone. He was being fitted for an implantable cardioverter defibrillator, a small device that provides a shock like a horse kick to the chest when the heart goes into a potentially lethal rhythm.

Matlock spoke to the man after the device was already implanted. It seemed like the patient had no idea what he had just gotten. He told Matlock that a doctor said he needed it. "He said this thing will help me live longer," Matlock recalls the patient saying.

"And now he's got this resuscitation device in his body, which was completely discordant from what he'd told me the day before," Matlock says in the lobby of the Denver DoubleTree, the distress in his voice evident even a decade after the incident. "And I remember being wound up and incensed and frustrated and, like, thinking medicine is terrible."

There was not much more Matlock could have done. This he knows. Still, he regrets not talking to the patient more. He regrets not helping the man exert his will over his own health care.

Vicie Reales says her late husband, Jim, "did not want to be hooked to a machine for rest of his life." (Ray Ng)The incident has become one of the driving forces behind Matlock's research, to which he has increasingly devoted his life; he now sees patients only one day a week and spends the rest of his time studying shared decision-making. Matlock's aim is to dismantle the power differential in the doctor-patient relationship so that a patient can make an informed decision, fully understanding both the benefits and the risks.

Matlock began studying how physicians present information to patients, and what he found was startling. Some doctors said they were afraid to tell patients about a surgery's risks. They didn't want the patient to make a "poor decision"—that is, one that would likely lead to a quicker death. "It's not just money-grubbing doctors and demanding patients. It's really well-meaning doctors," Matlock says. "This is paternalism in the best, well-meaning sense of the word."

But for Matlock, being a doctor isn't always about keeping people alive. It's about giving patients all of the information. If they decide they're too weak for treatment, that being hooked up to a machine for the rest of their lives isn't for them, that's all right. That's what it is to be a good physician, Matlock argues. That's medicine.

For Cliff Phillips, medicine meant a chance to live even when his heart couldn't.

Phillips was in his late 50s in April of 2011 and suffering from advanced-stage heart disease. A heart transplant was out of the question—a consequence of his peripheral vascular disease, a partial blockage in his arteries—and Phillips's vitality was ebbing.

That year, Phillips sat with University of Colorado doctors and his three children to discuss a plan that would keep him alive.

Cardiologists said Phillips was a candidate to receive an LVAD—the same device that had been offered to Jim Reales. The pump itself is about three inches long and is attached to the heart. One tube carries blood from the left ventricle to the pump. A propeller then pushes the blood into a second tube that goes to the body's main artery, which then circulates the blood throughout the body. Hooked to the pump is a cord, called a driveline. It's inserted under the skin and connected to a controller fastened like a fanny pack around the waist, which is then connected to batteries or plugged into an electrical outlet.

For Phillips, the LVAD was a "destination therapy," meaning the device would never be removed. This concept was studied with favorable results in 2001; before that, the LVAD was implanted in patients temporarily to keep the heart pumping while they were on the transplant list.

The implantation process is a bloody, risky, hours-long ordeal, and the perils don't end there. Complications after leaving the hospital can include a disabling stroke, a device-related infection, and serious bleeding.

A device that assists his heart allows Cliff Phillips, 62, to keep up with his grandkids. (Ray Ng)Phillips was lucky: He suffered no major complications. He's like the LVAD poster child, says Dr. Larry Allen, the director of the University of Colorado's advanced heart failure program. Allen was Phillips's main doctor, and he says he has never seen another patient so lucky.

Now the pump is Phillips's for life, its existence betrayed by a cord that snakes out from a hole in his stomach to a control pack at his waist connected to a battery in each pants pocket. It is about seven pounds of equipment he will carry every day. Without it, his advanced heart disease would quickly take its toll. With it, he can move freely for 12 hours at a time. When the device must be recharged, Phillips removes the batteries and charges them on a console. He plugs the controller, still attached to his waist, into a wall outlet, tethering him to a long cord.

But whatever the risks and complications, Phillips has no regrets, he tells me on a September afternoon in a Denver park.

Six years ago, Phillips was so sick he could barely walk. He'd maneuver from his bed to the television in the living room. He'd grab two sodas from the fridge to avoid the agony of standing up a second time. At family functions, he sat in the corner. In parks, he sat on the bench. His deteriorating health and failing heart left him weak and sluggish.

Phillips is 62 now, and he's a kinetic grandfather. More than three years after getting the pump, he competes in cornhole competitions; when we spoke he was ranked third in the Denver area, gunning for the No. 1 spot. He watches four young grandchildren, ages 3 to 11, three to four days a week. His mechanical, partial artificial heart has exponentially increased his energy.

During our visit to the park, Phillips is conscripted into 3-year-old Jacob's search for a missing plastic sword. "Grandpa, want to help me find it?" Jacob asks.

Phillips heads to the jungle gym, climbs the wooden fortress, peruses the area, and then points to the missing sword. A few minutes later, he helps free 5-year-old Brock, the second grandson in his care on this day, who got himself briefly stuck while climbing in a replica backhoe. "Five years ago, I couldn't do that," he says, returning to his spot on the bench. "I would have sat there and said, 'You can get yourself up.' "

Watching Phillips play with Brock and Jacob, it's hard to imagine why anyone would choose death over the heart pump. But it's not so simple. For one, Phillips is a living best-case scenario.

A stubborn, competitive man, he fought through his recovery. Doctors said he could be released from the ICU after he walked the length of the hallway. The next morning, he did just that. Some patients wind up in the hospital for many weeks. Phillips was released within 14 days. And doctors said he'd need a caregiver at home for several months. His children stayed with him for about a month.

But not everyone has had such success.

Within a year of the surgery, at least half of those who undergo it are readmitted to the hospital, according to a guide put together by the doctors at the University of Colorado. About one in five patients develop a severe device infection, and the same number bleed to the point of requiring medical attention. One in 10 have a serious stroke that causes disabilities. Some patients need surgery to replace their LVAD, which a patient named Dale, an elderly man with a raspy voice, describes in a 30-minute video that Matlock, Allen, and nurse practitioner Colleen McIlvennan helped create to force patients to grasp the real risks at play.

More than one-quarter of adults in the United States have given minimal—if any—consideration to their end-of-life wishes, let alone written down or expressed those wishes to their loved ones.

At first, Dale's recovery was speedy, and he felt his health improving. Then, complications ensued, Dale says, and he underwent a second surgery to replace the device, interrupting the recovery pace he and his wife, Ruth, were expecting. Would he receive yet another LVAD? "I would decline," he says, looking directly into the camera, "simply because my body couldn't handle it."

"We have this mind-set that technology is available, we must use it," says Dr. Ariel Green, an assistant professor of geriatrics at the Johns Hopkins University School of Medicine. "But for some patients, at a certain point of serious illness, it may have more potential to cause harm than benefit."

Dale's story is meant to help patients do something that Matlock and his colleagues know people are generally unprepared to do: confront their own mortality. More than one-quarter of adults in the United States have given minimal—if any—consideration to their end-of-life wishes, let alone written down or expressed those wishes to their loved ones, according to "Dying in America," a report written for the nonprofit Institute of Medicine and released in September. They haven't told their spouse when to turn off life-prolonging equipment. They haven't told their child they want to die at home. They haven't had a frank conversation with their doctors, family, and loved ones—or even thought much themselves—about when it's time to say, Enough, no more treatment, it's time to go.

But Jim Reales did. In August of 2012, doctors suggested open-heart surgery to implant an LVAD in his chest. Vicie told Jim she'd support whatever he chose to do.

Jim learned of the potential side effects. He'd be susceptible to a stroke and internal bleeding. He might not survive the surgery, but if he did, the road to recovery probably wouldn't be easy. His body would be left weakened, and it could take months for him to regain his strength. The wound site would need to be cleaned often, with the bandages changed three times a week. Showers were more complex, as the device can never get wet.

But without the pump, Jim was told, he had only six months to live.

"He started weighing all of those things," Vicie says, counting the possibilities off on her fingers. He could go with the unknown. Or he could live the way he wanted for his final six months, which is what he did. "And I never heard him ever say he regretted that decision," Vicie tells me at a downtown Denver café. "He did not want to be hooked to a machine for the rest of his life."

During the time they had left, husband and wife enjoyed each other's company while Jim was still lucid. They traveled with loved ones to the mountains in Colorado. They went gambling at Black Hawk casinos, Vicie wheeling Jim to and from the slot machines.

Soon, though, he weakened and eventually was confined to a bed set up in his living room. Vicie began to fear coming home from work, afraid Jim might have died without her there.

The end came on a Friday. Blood seemed to be pooling in Jim's legs; they were turning black, a sign to Vicie that death was near. "He's going to go this weekend," the hospice nurse told Vicie.

Vicie stayed beside her husband, watching him fade. She sat on one side, Jim's uncle on the other. He died on Feb. 22, 2013, holding their hands.

"The only thing I could tell him was that I loved him," she says, her voice cracking. "He told me he loved me back."