Dr. Warren Summer of Johns Hopkins Hospital has a philosophy: "Life is not measured in how long you live, but how well you live."
After reviewing one of his cases, Summer says he mistakenly imposed his philosophy on someone else.
Summer says that last year he turned off the respirator supporting an 81-year-old retired steelworker named Raymond Strickler because he believed Strickler's quality of life had fallen below an acceptable level.
For three months, Summer had tried every possible means of weaning Strickler from the respirator. Without the machine, Strickler could not breathe. With it, he could survive--a week, a month, perhaps indefinitely.
Summer, who was then just half Strickler's age, says: "I made a decision that there was nowhere for this guy to go, and that he was better off dead than alive."
So, one day early in January of last year, Summer decided on his own to enact his philosophy, his way. He told Strickler they were going to try again to get him off the respirator. "He didn't protest," Summer says. "But the thing is, he had been weaned maybe half a dozen times, failed, and been put back on. I never said to him, 'If you don't make it, this is it.' So he had no reason to protest."
Sometime in the next 12 to 15 hours, Summer says, Strickler lapsed into a coma and died.
Summer says he now believes he should have asked Strickler what he wanted. While very sick, Strickler was usually conscious and alert. The respirator tube prevented him from speaking, but he was still able to communicate his feelings and needs through gestures.
Summer says he could not imagine himself, or anyone else, wanting to live as a prisoner of advanced technology. Summer is an active man, a respected physician who cares for hundreds of patients and saves many of their lives; a devoted father who makes time for his family; a prominent researcher and teacher who travels to professional meetings around the United States and in Europe; an avid tennis player who keeps in good health.
"When you're young, you look at your patients through the eyes of a young person," he says. "Therefore you project. You project your feelings of frustration or unhappiness, onto them. And so, I don't think that I, as a young man, would have been able to tolerate being stuck on a respirator at this time of life.
"I struggle with it," he says. "When I quit, I was not convinced that I should have quit. I think he had failed my best efforts maybe five or six times to get him off the machine. And so I realized that I had tried everything under the sun, every resource possible, and it was hopeless to get him off the machine.
"What never dawned on me is that somebody actually could live on a machine and have some quality of life. Never entered my mind. It has now entered my mind."
SS ummer has decided that it is difficult to judge another person's quality of life in the S highly impersonal atmosphere of the intensive care unit (ICU).
"Quality of life is so hard to define," says the Rev. Clyde Shallenberger, the Hopkins chaplain who makes daily rounds with Summer in the ICU. "What is meaningful for me, in terms of my quality of life, could be very different for the patient."
Dr. William Hazzard, a Hopkins administrator who specializes in treating the elderly, says, "Physicians are biased, and they carry their own biases in there. So you really have to wonder. And what might be right for the physician may not be right for the patient.
"Most physicians, being what they are, would define a good life as one in which their brains were intact, in which they had food in their stomach, in which their family was well and adequately looked after. . . . For a person who's never had a roof over his head, never had a full belly, never had a profession or identity like that, maybe just another 24 hours, any kind of existence, is worth having.
"You have to ask yourself, 'Is it my own biases? Am I pulling the curtain on this patient because they're old, black, poor, smell bad, demented, or am I doing it out of some conscious decision?' "
There are no written guidelines governing the withdrawal of life-support systems from critically ill patients in the Hopkins medical ICU, according to Summer. Summer often faces the issue and says he has to rely on his best medical judgment.
"Now we're in a new domain. We're running out of resources. Because of helicopters, better ambulance services and emergency numbers in the city, we are now in the situation where people arrive here in time to be saved who would not have before," he says.
When doctors save a life, then later find that the situation is hopeless and they are artificially postponing the death of a patient, Summer says, "Is it reasonable to just pull back? I think that's okay."
Summer recalls one patient making the decision for him. A middle-aged man suffering from terminal cancer repeatedly asked Summer to disconnect the respirator, which the man said was prolonging his agony. At first Summer hesitated. Then he got a frantic call at home. He was told the man had yanked out his breathing tube and was demanding that it not be replaced. "I realized that he wanted to die," Summer says. "I said, 'Okay, let him.'
"I think we often try to tell people that we want them to participate in their care. But in the ICU they really don't participate very much. They're very passive and allow us to do our thing. I think to some extent, it was a very courageous move, and a very difficult move, and I respected the guy tremendously."
In another case, in which Summer decided it was reasonable to pull back, he was amazed by his patient's determination. She was an elderly woman with a terminal disease who had been rushed to the ICU more times than Summer can remember. Each time, she made it clear she wanted to be saved. Each time, Summer would save her and usually within a few weeks, she would be back.
"You watch people as they get older, and they don't want to die," Summer says. "They come back for more. They lose a leg. They lose an arm. They lose an eye. They get one heart attack. It's so surprising for a young person to watch as someone ages--both a relative or a patient--that they don't want to go. I don't know what the hell is left here, but they don't want to go."
WW hile there is no policy in the ICU on withdrawing respirators, the hospital W does have a "no resuscitation" policy that authorizes physicians to deny lifesaving therapy to certain critically ill patients.
The policy cites as examples patients with intractable heart failure or rapidly spreading terminal cancer. Such patients could be resuscitated--perhaps only to face imminent death again. The Hopkins policy encourages physicians to consult with the patients and their families before "declaring a patient not a candidate for resuscitation," but does not require a doctor to obtain the patient's consent.
Recently, staff physician Reed Pyeritz challenged the Hopkins policy as a form of professional hubris, saying it gives too much power to physicians in making "quality of life" decisions for their patients.
Pyeritz says the policy "tends to protect the physician as one who doesn't do wrong."
"It's just a reflection of the paternalistic form of medicine which I've never been a part and parcel to," says Pyeritz. "I've just always wanted to view myself as a person who worked with my patients, rather than some God overseeing their care."
He says he tends to agree with Boston College law professor Charles Baron, who has written: "A decision to end the life of a terminally ill patient is no more a mere 'medical question' to be decided by doctors than a decision to declare war is a mere 'military question' to be decided by generals."
Pyeritz recently proposed that Hopkins adopt a new policy that would "insure that the rights of the patients and family are protected." The proposal went nowhere. One opponent was the author of the current policy, Dr. Robert Mason. "I think the wording in Pyeritz's proposal was that there be a consentual decision between the physician of record and the guardian," Mason says. "But that word, as defined in the dictionary, means that it is a shared decision, and I feel quite strongly that it shouldn't be shared, can't be shared properly. It has to be one person's decision."
SS trickler, a longtime resident of the Dundalk section of Baltimore, was a curly-haired S man who liked to pinch the nurses and who seemed to enjoy it when Summer joked with him. Strickler entered Hopkins in October 1981. He had been hospitalized many times before. In the 1920s, he had had a kidney removed; later, a hernia operation, an ulcer, emphysema, asthma, dizzy spells and a broken hip. He was a chronic smoker who once fell asleep at home and set his bed afire.
Strickler was still demanding cigarettes on his final trip to the emergency room.
His cantankerous and feisty manner endeared him to the members of the ICU nursing staff. "You could talk to the man," Martha Conlon recalls. Says Tina Bergman: "He had a cute way about him."
"The nurses had such a good time with him," says Summer. "They loved him like a puppy dog. They did his hair in curls. They played with him like a little doll. . . . He liked the attention.
"He'd light up and smile when I saw him in the morning. And I'd light up when I saw him."
Helen Strickler, 79, was also ailing and only could visit her husband a few times. "They had him on the respirator," she recalls. "They had him on the heart monitor. I know I counted, I think, maybe eight needles in that right arm. And they had one in the foot, in the bottom of the foot.
"I think a couple of times they just unhooked the respirator . It must not have turned out very good because they said they'd have to put him right back on."
The process went like this, Summer says: "About once a month, when we really thought we were making progress, we'd try to wean him off the respirator." At times he could remain off the respirator for a short while. But his breathing would always deteriorate, and Summer would have to return him to the machine. Summer was stymied.
"This guy was loving," Summer says. "He could have stayed for months. . . . I mean, if we didn't keep trying to wean him, he was doing terrific. Every time we got in trouble it was because we created it by trying to get him off and putting him in a compromising position. This is the curse of the respirator.
"But I made a conscious decision which I don't know if I'd let someone else make about my father, that this guy should not be alive."
It was the first week of January 1982.
"I tried to be enthusiastic," Summer recalls. "I said, ' We're going to give it another chance. We're going to give you another chance to maybe get out of the unit, to go home for the new year . . . . '
"I think he knew that he wasn't going to make it . . . . I can't disguise my voice."
Summer removed Strickler from the respirator the final time.
To some of the young nurses and members of the medical staff, the decision not to return Strickler to the respirator when his lungs failed seemed reasonable. They knew Strickler would not die immediately and believed there was even a small chance he might survive on his own this time.
Some nurses believed that the ICU was only perpetuating Strickler's unhappy existence. "We were just causing him more suffering than anything else," recalls head nurse Carol Laprade.
"With someone older," says nurse Janice Stangroom, "it's a lot easier to say 'They're going to die. It's time to die. . . . They lived out their life. They lived a good life.' It's a way to rationalize it . . . a defense mechanism."
"I think in the end that although it may not seem appropriate, age certainly ends up playing a role," says Dr. Terry Boulware, then a 28-year-old physician in the ICU. "Someone's lived 80 some-odd years. . . . Why support them, and cause them to live a miserable six months or a year when that would be spent all in a hospital?
"I think the way you have to look at this," Boulware says, "is as a gentleman who has a disease that has been self-inflicted. . . . Everyone looks at the patients who chose to continue to smoke, who chose to continue to deteriorate their lung function, a little differently than they do a poor person who is stricken by--through no fault of his own--some horrendous infection. . . . I don't think the care of those patients is any different but I think overall our attitudes and our acceptance in what is the ultimate outcome is a little different."
"He knew he was dying," Stangroom says. "He would take your hand. A lot of us spent that night going in and out of his room, holding him."
Strickler died quietly after 12 to 15 hours off the respirator, according to Summer and the nurses. The official cause of death was respiratory failure.
SS ummer says now: "I was making a decision on the quality of life. I looked at my quality S of life . . . and said his is so bad that he must . . . want to die . . . . He never told me that. I didn't know it. I didn't broach it with him.
"I am just not sure that I was right in making that decision. I did play God. I did it. It doesn't bother me from the point of view that I will have to make that decision again. It is only: Am I capable of making that decision correctly, for that individual, at that time? That's really the problem. Was I right? Was my timing right? If I had left him alone, would he have died by himself a couple of days later?
"Playing God is not hard. It's playing God poorly that's hard.
"Doctors do play God. They make decisions without fully informing families, fully informing patients. . . . I think if I would have asked him, he wouldn't have let me quit. I think he would not have. . . . I decided I knew what his quality of life is. I have no right to do that. . . . I'm a year older. I'm a year smarter. I have a lot of nerve. . . . I have a lot of audacity. I just assumed it, as a young impulsive son of a bitch that that person's quality of life wasn't worth living. . . . This has all been very educational for me. Who the hell am I to decide on quality of life?
"Many people continue to surprise me in feeling it is how long they live--not how well they live. Many, many people, given options of a couple more hours, a couple more days, a couple more weeks, will choose that at a great expense of pain, discomfort, money. I don't understand that--how they want to go on, even in the worst situations.
"I find that under these circumstances, what still continues to happen is that older people don't want to quit. As their worlds constrict, their expectations also shrink, and they grow to accept their limits.
"If they are alert enough to be aware of their surroundings, there are still some joys of life. . . . It could be seeing the grandchild, seeing the child, having one good meal, laughing at a good joke, seeing someone's eyes twinkle. It is unbelievable how much people will tolerate for those brief periods of joy. . . . What I see now . . . the more I think about it and talk to other people, is that there are joys for those people--that are diminishingly small--but joys themselves. How courageous people are. How long they want to go on.
"To me . . . whose world is open, to be stuck in my house would drive me bananas; on a respirator, intolerable. So there's my projecting. . . . It's not such a contraction for them, and I will remember that.
"And what do you really know--you who's learned science, and studied electrolytes and cardiac function--what the hell do you know about people and their quality of life? And in truth, the doctor has a hard time making that decision because he has no cotton-picking idea what 'quality of life' is."
To Summer, knowing a patient is dying makes it easier for the doctor to rationalize his actions. "If what you say is, 'I know the ultimate outcome here . . . it's going to turn out bad, and therefore what I'm doing now is one step to the end' . . . then I think we all do that, and we do that not infrequently.
"The question that becomes a moral dilemma is, 'Which step are you willing to take?' "
If Summer turned off a respirator and a patient died, was Summer the executioner? Or merely a lowly carpenter hammering together the wood to construct the gallows?
"Are you going to push the guy, or chop his neck, or are you going to make the steps or the rope?" Summer asks. "These are all different things. I don't know when mine's making the ropes, or the wood, or the nails."
HH elen Strickler remembers her last visit with her husband at the end of DecemH ber. "He had that tube," she says. "He said something about he's dying. I said, 'No.' I said, 'I don't think you're going to die. They are trying to get you better.'
"He had that attitude. You could tell. He knew he wasn't getting any better. A lot of times he'd say, 'I wish I was gone. I wish I was dead.' So I said, 'Well, you live till you die. That's the only thing I know.' "
The morning of Jan. 4, 1982, Helen Strickler received a phone call at home.
"They called us and told us he had passed away," she recalls. "Complications, I guess, and everything like that."
Tomorrow: Part 5