Albert Knox (left) visited his son Richard in college around 1966.
Courtesy Richard Knox
Courtesy Richard Knox
Albert Knox (left) visited his son Richard in college around 1966.
Courtesy Richard Knox
Making Plans: A Living Will
A living will is a valuable guide to deciphering a patient's general wishes. If you don't want to be kept alive indefinitely, it's a good way to make your wishes known.
According to current thinking, however, a living will is not enough — even if more people executed them. (According to one estimate, only 9 percent of Americans have.)
"The living will provides guidelines, but it is impossible to predict the situation one is going to be in," says Mary Meyer of Concern for Dying, a New York-based organization that mails out at least 40,000 sample living wills each year. "A living will can't cover every contingency."
In addition, the law on living wills is a patchwork. Forty states and the District of Columbia have statutes recognizing such "advance directives." But many laws are so restrictive they rule out large categories of patients. And many living wills are so vague that they are often useless when the time comes to make hard decisions.
"Living will statutes deal with the easiest cases — the person who will die in a relatively short period of time, for whom nothing can be done," says Leonard H. Glantz, Boston University professor of health law. "Very often, decisions have to be made on behalf of people who can live for long periods of time with treatments that are very invasive."
Currently the most controversy centers on withdrawal of tube feeding and hydration from patients who are not "terminally ill" but are not expected to recover. Just such a case is headed for the US Supreme Court in its 1990 term.
Because of such disputes, some living will advocates say citizens have an advantage if they live in states like Massachusetts, which lacks a living will statute but has a solid body of case law upholding relatives' right to decide what the patient would want.
But the living will should be supplemented, many experts say, by a simple document called a durable power of attorney that designates a person authorized to make medical decisions on behalf of an unconscious or mentally incompetent patient.
Neither the living will nor the durable power of attorney requires the assistance of a lawyer. In general, a living will should be witnessed and a durable power of attorney should be witnessed and notarized. Both forms are available from Concern for Dying at 250 W. 57th St., New York, NY 10107.
If you execute such directives, Glantz urges, make sure you inform those close to you, such as your family and your physician, of their existence and whereabouts.
Has the BU professor executed a living will and a durable power of attorney? "No, I haven't," Glantz admits. "But I plan to live forever."
NPR reporter Richard Knox tells the story of his father's last weeks of life. Throughout the roller-coaster course of kidney and liver failure and multiple cardiac arrests, Knox struggled to make the best decisions for his father's care. Hardest of all was deciding when to fight and when to let him go.
This piece was originally published Oct. 8, 1989, in the Boston Globe Sunday Edition and is reprinted with permission from the Globe.
Any adult past a certain age who has a living parent keeps the possibility somewhere at the back of his mind. Still the call seemed to come out of the blue. "Your father is in the hospital. They think it's terminal," said my stepmother, who is given more to stoicism than alarm. "They want to know if we want heroic measures."
Heroic measures. The very phrase breathes futility.
Wait a minute! How can this be? Yes, he's 78. Yes, he's had emphysema for 15 years — but he gets around fine and doesn't require oxygen. Yes, he's been getting radiotherapy for a prostate tumor — but he only had a week's more treatment to go and the specialists were sure the cancer was limited and curable.
"His liver and kidneys are failing," my stepmother replies in a shaky, far-off voice. "The doctor thinks he may have cancer throughout his abdomen."
I'm skeptical. Before recommending radiotherapy the doctors at the regional cancer center in Tampa had done X-rays, CAT scans and bone scans, seeking evidence the cancer had spread. They found none.
It's Saturday. The community hospital in Florida can't do a CAT scan until Monday morning to verify the admitting doctor's alarming suspicion.
"Let's do whatever is necessary until we find out what's going on," I suggest. Without hesitation she agrees. Within an hour he's been transferred from a regular floor to the critical care unit, where they can resuscitate him if his heart stops before we find out what's killing him. Meanwhile, I'm talking to airlines about flights to Orlando.
Behind the emotional turmoil, I make a mental note: In Florida, where death seems as much a part of the environment as mildew, doctors and nurses seem to expect families of terminally ill patients to "let them go" rather than fight. I have no quarrel with that. The issue for us is: What is "terminal"? And when?
If any situation kindles the impulse to be heroic, it's the threatened death of one's father, mother, spouse or child. The feeling is so primal that we are regularly warned against medical heroism these days, when every community hospital has its intensive care unit and somebody else is paying the bill. Don't, ethicists caution, yield to the temptation to keep your loved one alive beyond any rational purpose.
Among medical personnel the practice is called "flogging," as in, "Don't flog a dead horse."
Who can disagree? Apparently a shrinking American minority. A plethora of polls in recent years consistently shows that more than 4 out of 5 people approve of terminating "extraordinary" life-support measures if the patient has no hope of recovery. Recently the consensus seems to be broadening to not-so-extraordinary measures, such as "tube" feeding and intravenous fluids.
Most of these polls are couched in terms of life support for terminally ill patients. But a 1988 poll of Ohio residents found 88 percent would not want to be "kept alive by extraordinary means if there were only a small chance of living a normal life."
All well and good, but when it's your father-mother-wife-child, the question is no longer academic. Suddenly you need facts and explanations. What's wrong? Can it be treated? If he survives, will he be the same as before? Will he be normal?
I know from 20 years of writing about medicine that even the best physicians often can offer no immediate answers to questions like these. I also know that doctors and nurses vary enormously in their ability and willingness to communicate medical information.
But the next two weeks will teach me anew how hard it is to extract and assimilate the data families need to answer the awful question: "Do you want heroic measures?" I will also learn firsthand that the question is often far from cut-and-dried, as many thoughtful people imagine when they fill out living wills or declare, "I never want to be maintained on a machine."
Just as you think you've grasped the situation and made some decisions you can live with — whether it's "go all out" or "let him go" — some surprise, nasty or hopeful, demands new analysis, new decisions, more emotional energy.
In these discoveries we have plenty of company. This year something like 1.5 million elderly Americans will die, more than 1 million of them in hospitals. I hope not many have as harrowing a time as my father, but the odds are against it.
At one point in my father's roller-coaster course, our favorite intensive care nurse tells us that patients and their families often change their minds about such things as respirators when confronted with real choices about life and death. "Not many people," she observes, "can put a plastic bag over their heads and say, 'Now I'm going to stop breathing.' "
Soon after I arrive in Florida, encumbered by the gloomiest thoughts, one crucially important thing becomes clear. As we suspected, the CAT scan shows it isn't metastatic cancer. "I'm glad I didn't let Dr. A. tell him it was cancer," says my stepmother Elizabeth, universally known as Tommie since her tomboy girlhood. "That would have killed him all by itself."
I know what she means. My paternal grandfather died of prostate cancer in 1937, when there was nothing (at least in small-town Illinois) to treat or palliate the disease. Dad never said much about his father's death, but I knew he lived in secret fear of a similar fate. A few days before he fell ill, Tommie confides, he emerged from his morning shave to declare, "I have it. The cancer complexion."
What he had was the look of kidney and liver failure. As acute illnesses go, that's as grave as they get.
Still, ruling out cancer as the cause is both hopeful and complicating. Hopeful because it means he still has no "terminal" diagnosis. Complicating because it's much simpler to decide against all-out, aggressive intervention if the patient is "going to die anyway."
Such nice distinctions are not evident from his appearance. The poor guy looks as if he's been run over by a truck, I think, looking down at his unconscious body battered by assaults external and internal. The visible wounds are bruises caused by intravenous lines, insertion of a Swan-Ganz catheter in his neck artery (to measure cardiac output) and countless vampire sticks for repeated monitoring of two dozen different metabolic indices. Also, most of his toes are an alarming combination of deep blue, purple and black — why, I don't know yet.
I wonder how many families, gazing at their loved ones tortured on such a rack, cry: "Stop! He wouldn't want this." Completely understandable, but the evidence of our eyes is not enough. We've got to find out what's going on, whether it may be reversible, and at what cost.
So we tell the doctors we want him treated aggressively, including resuscitation and respirator support, if necessary, "as long as there is a purpose in it."
We cannot know how much we'll agonize over the next three weeks — swinging repeatedly from "heroic measures" to "do not resuscitate" — as dad's condition and prognosis fluctuate. He will surprise us all by surviving four cardiac arrests, two episodes of respirator care and a drug-induced coma.
Trust is an essential ingredient of good communication at a time like this. But I am not predisposed to trust the 150-bed hospital where dad is being treated. For one thing (a small thing, I admit), the wall-to-wall carpeting gives it a musty smell, combining hospital with cheap motel. More to the point, a year before it was the scene of a crisis involving dad that didn't inspire confidence.
A surgeon there removed several colon polyps he suspected were cancerous. When serious bleeding ensued, he proposed immediate total colectomy — removal of the entire colon — even though he had no biopsy results yet indicating the polyps were cancerous. We sought a second opinion at a regional cancer center in Tampa, where specialists burned and snipped out seven more polyps. None was cancerous. The bleeding, they said, resulted from the local surgeon's clumsiness with the electrocautery knife.
I recount this episode to Dr. A, the man in charge of dad's case this time. "Who was the surgeon?" he asks. "I don't remember," I say. "We only have three. Was it Dr. X?" he asks. "Yes," I say, recognizing the name. "I'm not surprised," he says.
Dr. A gains a notch on my confidence scale.
My father's crisis seems to be largely iatrogenic — that is, caused by medical care. It stands as a warning to elderly people on multiple medications and to doctors who prescribe for them.
The kidney specialist thinks, and other doctors eventually agree, that dad suffered a toxic reaction to a widely used analgesic called Pyridium. A urologist first prescribed it after a routine prostate operation, to quell what dad called "a feeling like razor blades" whenever he urinated.
The "Physicians' Desk Reference" entry on Pyridium warns that even the usual dose can lead to toxic reactions, including liver and kidney failure, in patients with already-impaired kidney function — which, the reference notes, is "common in elderly patients."
An advertisement I chance upon in a doctors' publication implies the drug should be used only for "the first couple of days of urinary tract infection" to relieve burning and urinary urgency before antibiotic therapy has had a chance to kick in.
Dad's prescription was renewed three times over a two-month period by two different doctors. "This has been an eye-opener for me," one of them volunteers during a conversation outside the critical care unit. He is clearly anguished by the situation and looks in on dad regularly, though he's under no obligation to do so.
Gradually it occurs to us that dad's case has the makings of a malpractice suit. After Tommie and I overhear a corridor conversation between two doctors, we're aware that they think so, too. Discussing it between ourselves, we quickly and firmly dismiss any notion of suing. A mistake may have been made, but it wasn't gross incompetence and we don't feel vengeful.
But, as many patients and families are finding these days, we discover that the unspoken possibility of litigation adds static to our communication with doctors and nurses. As I probe for data on dad's condition — information we need to make decisions about his care — I can sometimes sense them wondering, "Is he building a case?"
Kidney and liver failure are bad news, especially for the elderly, because these organs must filter toxins from the blood and manufacture a host of vital substances without which blood cannot clot, blood pressure falls, arms and legs swell with fluid and drugs build to toxic levels. The buildup of waste products, called toxemia, depresses the brain, irritates the heart and disables the immune system. Moreover, when the liver shuts down, so does the nutrition to fuel the whole enterprise.
On the other hand, all these things are potentially reversible if therapy can correct the underlying problem without causing a host of new ones.
But it turns out that kidney and liver failure are not dad's only life-threatening problems. He also suffers from something called diffuse intravascular coagulation, or DIC, in which blood inappropriately clots in small blood vessels throughout the body. This may have caused his toes to turn black and purple — although it's possible it was due to low blood pressure.
Paradoxically, DIC leaves its victims open to the risk of major bleeding because all the available platelets and clotting factors are used up by this kidney shutdown.
Whatever the cause, the DIC complicates virtually every aspect of his care. Necessary punctures for intravenous catheters and IV lines and blood-drawing require many minutes of pressure to stop blood loss. We worry about major internal bleeding or a hemorrhagic stroke.
On the sixth day of his hospitalization, I get a call from Dr. B, dad's nephrologist, or kidney specialist. This brainy, blunt-spoken, obviously dedicated young woman was brought in as a consultant, but as dad's metabolic derangements pile up, she has taken over a major share of managing the case.
"The numbers are worse: He has a fever of 102.8, his prolonged uremia prevents his white cells from functioning and his brain and heart from working," she reports crisply. "I'd like to give him a spot of dialysis. It's either that or let him go down the tube."
I authorize the temporary artificial kidney treatments. But 10 minutes later she calls again.
"I've been thinking about it some more and I'm uncomfortable with dialysis because of the risk of bleeding," Dr. B says. "I don't want to be the one to cause his demise." She is not asking if she should dialyze him despite the risk. She is telling me she won't take the risk.
I hang up feeling — wrongly, as it turns out — that the game is up. The episode is one of a dozen Catch-22s we'll encounter in three weeks of intensive care, all of them textbook examples of the diceyness of geriatric medicine.
Replacing natural products such as platelets and albumin involves infusing large volumes of fluid that further strain his overburdened heart. A staph infection acquired in the hospital sends his temperature soaring past 103 and requires antibiotics that tax his battered liver. A resuscitation effort leaves him with a minor myocardial infarction — a patch of dead heart tissue. A drug necessary to stabilize erratic heart rhythms puts him in a profound coma that leads his doctors and us to the verge of turning off his respirator.
It often seems medicine is at war with itself on the battleground of my father. But recognizing when to press on or when to surrender involves the most difficult series of decisions I had ever encountered, or ever hope to.
For the most part, my stepmother, my brother Tom and I are pleased with dad's care. Certainly the critical-care nurses are first-rate, as care-givers and as people. Dr. A, the attending physician, is a bluff fellow whose main fault is a tendency to overstatement but who has the redeeming virtue of common sense. Dr. B, the nephrologist, is competent and caring. The neurologist and hematologist seem conscientious, able, approachable.
The exception, Dr. C the cardiologist, represents such an extreme of the blind-interventionist school that we shudder to think about his future encounters with elderly patients and their families.
My first impression of him is merely that he's one of the jumpiest persons I've ever met. The trouble begins a few days later when I'm back at my desk in Boston and Tommie calls to say Dr. C wants to helicopter dad to Orlando for a series of electrophysiologic tests on his heart, which is tap-dancing to an ominous rhythm all its own.
This sounds rash to me. By this point, my father has already been resuscitated from two cardiac arrests. Though his organ failure and blood clotting problems show signs of improvement, he's in frail shape. The proposed tests, I know, involve giving a test drug and then deliberately trying to induce a potentially fatal heart rhythm called ventricular tachycardia to see if the drug will prevent it. If drug A fails, the process is repeated with drug B, and so on.
I call on a Boston specialist in abnormal heart rhythms to see what he thinks. "It sounds very aggressive to me," he says. "If he were at the Brigham we wouldn't be doing it at this point."
I call Dr. A. He agrees with my Harvard adviser but says "I've got a board-certified cardiologist here who says it needs to be done." He agrees to discuss it with the Orlando specialist who would do the tests. Twenty minutes later he reports the opinion is unanimous against Dr. C's recommendation.
When Tommie and Tom communicate our decision to Dr. C at the hospital, he appears highly offended. "Under the circumstances, I have no choice but to remove myself from this case," he announces.
This astounds me. Dr. A has already told me Dr. C is the only cardiologist on the staff. How can he walk away from a critically ill old man just because the family wants him to follow a more conservative course?
Days later, when I feel we need additional cardiologic advice, I ask the hospital administrator for help. That evening Dr. C calls to say he would be "honored" to come back on the case if we wish. I say we wish it only if he is willing to do the best he can short of risky, invasive tests. Grudgingly, after 90 minutes of hashing it out, he agrees.
On paper the guy looks super. Trained at some of the best schools and hospitals on both coasts, even has a PhD in cardiac physiology. But there's no doubt in my mind he doesn't belong in a community hospital if he can't practice within limits set by the institution's capabilities and families' wishes.
Things have been looking up for a few days. Dad slowly awakes from a profound coma — at one point the neurologist erroneously calls it a "persistent vegetative state." (Turns out it was a reaction to lidocaine, a drug that was used to suppress his erratic heart rhythms.)
Tommie has supported curative treatment and resuscitation. But she begins to have major doubts about dad's quality of life should he survive. Now that he's gaining ground, she's thinking about the difficult road ahead and how he'll respond to what surely will be a grueling and incomplete convalescence.
Nevertheless, we arrive at the hospital for the 11 a.m. visit feeling pretty upbeat. A minute later an urgent voice on the paging system calls "Code 44! Code 44!" and people start running toward the critical care unit. We look at each other and we know.
Presently a social worker arrives and escorts us down the hall to a kiddies' playroom, where we perch on tiny chairs and count our own heartbeats. Dr. B., the nephrologist, rushes in, her large eyes wider than usual. "Mr. Knox is undergoing CPR. Do you wish me to intubate him?" In other words, shall she put him back on the respirator or let him die? Before we can answer, she is called back. I tell the social worker: "Tell Dr. B. we do not want him intubated."
Moments later the doctor is back. Either she didn't get the message or she wants to make doubly sure. "Do you want me to intubate him?" Again, we say no. I marvel that the words come more easily than I would ever have imagined.
"Then I will call a halt to the code," she says slowly, gravely.
"Yes, we understand," we reply numbly. She disappears.
That's it, our eyes say to each other. He's gone. I ask the social worker where to find a phone to call my brother.
When I return from that duty, I find a nurse telling Tommie that when they stopped thumping on dad's chest (the code has lasted 20 minutes), they found he had a heartbeat, a pulse, spontaneous respiration, blood pressure.
"It just couldn't have been smooth, could it?" I blurt out, sending the nurse's and social worker's eyebrows toward the ceiling. "It had to be another roller-coaster ride." I stomp off to tell Tom to suspend his grief.
There is nothing funny about it at the time, but several days later Tommie and I will be able to have a laugh about it and look forward to telling dad the story someday. It's the kind of thing he would appreciate.
This dry run of death spurs some serious rethinking. Hour after hour — every waking minute, in fact — Tommie and I wrestle with what to tell the doctors to do the next time dad's heart stops.
Dr. B urges us to do nothing, no resuscitation at all. "I'm an all-or-nothing doctor. I don't like to go halfway," she says. "If it were my father, I would not resuscitate him."
Dr. C, our errant cardiologist now back on the case, still thinks we ought to send him to Orlando, a decision that only makes sense if we are willing to put him back on the respirator, should that be necessary. We are adamant: Not that merry-go-round again. Short of that, he presses us to leave orders for a "segmented code." They would use heart-stimulating drugs, do CPR, shock his heart back to life if necessary (so far it hasn't been), but not intubate him.
I lean toward the "semicode." How can I cope with the euphoria of getting him back, seeing him eat jello and cracking wise, while saying we're going to withhold something as simple as a thump on the chest the next time his heart stops? What has all this been about?
"We've come this far," I argue. "His liver and kidneys are coming back. Despite everything, his brain seems intact. It'll take a long time, he may never be the same, but he can come back to some enjoyable quality of life."
Tommie knows him too well. Since my father retired in 1980 as publisher of the Edwardsville (Ill.) Intelligencer, a small-town daily newspaper, he had joined those legions of men who never really adjust. After a lifetime of hard work, of prevailing over adversity, of enormous zest in his work and in other people, he has been a little lost in his leisure. The last 18 months have been troubled by a string of medical nuisances. After a lifetime of good health and fierce independence, he has no patience with being a patient. And I can imagine how he's going to react to the news that his gangrenous toes - all 10 of them - are going to have to be amputated and he'll have to struggle to walk again. If he can survive the operation.
"I know you have trouble seeing it from my point of view," Tommie says. "You're young. You have a lot of life ahead of you. But he's 78. He's had a good life and he'd be miserable if he couldn't be the man he was. He wouldn't understand. He wouldn't understand what has happened to him.
"You have to understand, Dick: I'll take him back in any condition and I'll give him the best care I can. I want him to survive! I love this man! I've loved him for 24 years! But I'm not going to do anything more to help him survive if he's going to be miserable - and Lord, would he be miserable! Is that clear?"
It is. I know she's right and I assent. The "Do Not Resuscitate" order stands. But it will take me a couple of days to make my peace with the decision. And of course, the order may be moot. He may surprise us all again and survive.
Our thrashing-through of life-and-death decisions — yet again and let's hope for the last time — makes us miss the evening visit. Tommie suggests I go alone.
Charmin, his 30-year-old night nurse, has a heartening report. He's trying to provoke her by calling her "grandma" and chiding her for being a "cheapskate" because she's turned his dose of blood pressure medicine down from 17 micrograms all the way to 8 (great news). "Needle him back," I advise her. "The best medicine."
The first thing I notice is his face. Through all this illness, his features had melted into a heart-wrenching slackness, a death mask. Now he's in command of his face again.
I find him in a talkative mood, though I have to strain to catch the words. "You look like your old self," I say.
"With the emphasis on 'old,' " he replies.
"Someday I'd like to tell the story of your medical care," I say. "In fact, I'm writing a magazine article about it right now. Do you mind?"
"As long as we split the proceeds" is his comeback. Is there anything more miraculous, I ask myself, than a sense of humor that can survive all this?
After some more easy chitchat, it's time to go. He's tiring. By way of Godspeed, I hear myself say something I don't recall ever saying directly to his face. It would have embarrassed us both, until now.
"Good night, dad. I love you. You're a great dad."
"I've had a lot of practice."
"Yeah, but some people never get it right."
He likes that. As I leave the room, he's smiling.
My father, Albert L. Knox, died at 10 a.m. on the 24th day of his hospitalization.
It wasn't apparent until two or three days before the end that he wasn't going to make it. During that time, he had surmounted liver failure, kidney failure, blood clotting problems, shock, cardiac arrests, infections, drug-induced coma. His emphysematous lungs performed amazingly well through all this.
He fought a valiant fight, but in the end he ran out of steam. Though the lab values continued to look good, he stopped talking, stopped eating, finally lost the energy to cough. Without the ability to bring up secretions, his lungs filled with fluid. Eventually he just stopped breathing. They told us he was peaceful at the end.