http://www.newyorker.com/reporting/2010/08/02/100802fa_fact_gawande?currentPage=all
Annals Of Medicine
Letting Go
What should medicine do when it can’t save your life?
Modern medicine is
good at staving off death with aggressive interventions—and bad at
knowing when to focus, instead, on improving the days that terminal
patients have left.
Sara Thomas Monopoli was
pregnant with her first child when her doctors learned that she was
going to die. It started with a cough and a pain in her back. Then a
chest X-ray showed that her left lung had collapsed, and her chest was
filled with fluid. A sample of the fluid was drawn off with a long
needle and sent for testing. Instead of an infection, as everyone had
expected, it was lung cancer, and it had already spread to the lining of
her chest. Her pregnancy was thirty-nine weeks along, and the
obstetrician who had ordered the test broke the news to her as she sat
with her husband and her parents. The obstetrician didn’t get into the
prognosis—she would bring in an oncologist for that—but Sara was
stunned. Her mother, who had lost her best friend to lung cancer, began
crying.
The doctors wanted to start treatment right away, and that
meant inducing labor to get the baby out. For the moment, though, Sara
and her husband, Rich, sat by themselves on a quiet terrace off the
labor floor. It was a warm Monday in June, 2007. She took Rich’s hands,
and they tried to absorb what they had heard. Monopoli was thirty-four.
She had never smoked, or lived with anyone who had. She exercised. She
ate well. The diagnosis was bewildering. “This is going to be O.K.,”
Rich told her. “We’re going to work through this. It’s going to be hard,
yes. But we’ll figure it out. We can find the right treatment.” For the
moment, though, they had a baby to think about.
“So Sara and I
looked at each other,” Rich recalled, “and we said, ‘We don’t have
cancer on Tuesday. It’s a cancer-free day. We’re having a baby. It’s
exciting. And we’re going to enjoy our baby.’ ” On Tuesday, at 8:55
P.M., Vivian Monopoli, seven pounds nine ounces, was born. She had wavy brown hair, like her mom, and she was perfectly healthy.
The
next day, Sara underwent blood tests and body scans. Dr. Paul Marcoux,
an oncologist, met with her and her family to discuss the findings. He
explained that she had a non-small cell lung cancer that had started in
her left lung. Nothing she had done had brought this on. More than
fifteen per cent of lung cancers—more than people realize—occur in
non-smokers. Hers was advanced, having metastasized to multiple lymph
nodes in her chest and its lining. The cancer was inoperable. But there
were chemotherapy options, notably a relatively new drug called Tarceva,
which targets a gene mutation commonly found in lung cancers of female
non-smokers. Eighty-five per cent respond to this drug, and, Marcoux
said, “some of these responses can be long-term.”
Words like
“respond” and “long-term” provide a reassuring gloss on a dire reality.
There is no cure for lung cancer at this stage. Even with chemotherapy,
the median survival is about a year. But it seemed harsh and pointless
to confront Sara and Rich with this now. Vivian was in a bassinet by the
bed. They were working hard to be optimistic. As Sara and Rich later
told the social worker who was sent to see them, they did not want to
focus on survival statistics. They wanted to focus on “aggressively
managing” this diagnosis.
Sara
was started on the Tarceva, which produced an itchy, acne-like facial
rash and numbing tiredness. She also underwent a surgical procedure to
drain the fluid around her lung; when the fluid kept coming back, a
thoracic surgeon eventually placed a small, permanent tube in her chest,
which she could drain whenever fluid accumulated and interfered with
her breathing. Three weeks after the delivery, she was admitted to the
hospital with severe shortness of breath from a pulmonary embolism—a
blood clot in an artery to the lungs, which is dangerous but not
uncommon in cancer patients. She was started on a blood thinner. Then
test results showed that her tumor cells did not have the mutation that
Tarceva targets. When Marcoux told Sara that the drug wasn’t going to
work, she had an almost violent physical reaction to the news, bolting
to the bathroom in mid-discussion with a sudden bout of diarrhea.
Dr.
Marcoux recommended a different, more standard chemotherapy, with two
drugs called carboplatin and paclitaxel. But the paclitaxel triggered an
extreme, nearly overwhelming allergic response, so he switched her to a
regimen of carboplatin plus gemcitabine. Response rates, he said, were
still very good for patients on this therapy.
She spent the
remainder of the summer at home, with Vivian and her husband and her
parents, who had moved in to help. She loved being a mother. Between
chemotherapy cycles, she began trying to get her life back.
Then,
in October, a CT scan showed that the tumor deposits in her left lung
and chest and lymph nodes had grown substantially. The chemotherapy had
failed. She was switched to a drug called pemetrexed. Studies found that
it could produce markedly longer survival in some patients. In reality,
however, only a small percentage of patients gained very much. On
average, the drug extended survival by only two months—from eleven
months to thirteen months—and that was in patients who, unlike Sara, had
responded to first-line chemotherapy.
She worked hard to take
the setbacks and side effects in stride. She was upbeat by nature, and
she managed to maintain her optimism. Little by little, however, she
grew sicker—increasingly exhausted and short of breath. By November, she
didn’t have the wind to walk the length of the hallway from the parking
garage to Marcoux’s office; Rich had to push her in a wheelchair.
A
few days before Thanksgiving, she had another CT scan, which showed
that the pemetrexed—her third drug regimen—wasn’t working, either. The
lung cancer had spread: from the left chest to the right; to the liver;
to the lining of her abdomen; and to her spine. Time was running out.
This
is the moment in Sara’s story that poses a fundamental question for
everyone living in the era of modern medicine: What do we want Sara and
her doctors to do now? Or, to put it another way, if you were the one
who had metastatic cancer—or, for that matter, a similarly advanced case
of emphysema or congestive heart failure—what would you want your
doctors to do?
The issue has become pressing, in recent years, for
reasons of expense. The soaring cost of health care is the greatest
threat to the country’s long-term solvency, and the terminally ill
account for a lot of it. Twenty-five per cent of all Medicare spending
is for the five per cent of patients who are in their final year of
life, and most of that money goes for care in their last couple of
months which is of little apparent benefit.
Spending on a disease
like cancer tends to follow a particular pattern. There are high initial
costs as the cancer is treated, and then, if all goes well, these costs
taper off. Medical spending for a breast-cancer survivor, for instance,
averaged an estimated fifty-four thousand dollars in 2003, the vast
majority of it for the initial diagnostic testing, surgery, and, where
necessary, radiation and chemotherapy. For a patient with a fatal
version of the disease, though, the cost curve is U-shaped, rising again
toward the end—to an average of sixty-three thousand dollars during the
last six months of life with an incurable breast cancer. Our medical
system is excellent at trying to stave off death with
eight-thousand-dollar-a-month chemotherapy, three-thousand-dollar-a-day
intensive care, five-thousand-dollar-an-hour surgery. But, ultimately,
death comes, and no one is good at knowing when to stop.
The
subject seems to reach national awareness mainly as a question of who
should “win” when the expensive decisions are made: the insurers and the
taxpayers footing the bill or the patient battling for his or her life.
Budget hawks urge us to face the fact that we can’t afford everything.
Demagogues shout about rationing and death panels. Market purists blame
the existence of insurance: if patients and families paid the bills
themselves, those expensive therapies would all come down in price. But
they’re debating the wrong question. The failure of our system of
medical care for people facing the end of their life runs much deeper.
To see this, you have to get close enough to grapple with the way
decisions about care are actually made.
Recently, while seeing a
patient in an intensive-care unit at my hospital, I stopped to talk with
the critical-care physician on duty, someone I’d known since college.
“I’m running a warehouse for the dying,” she said bleakly. Out of the
ten patients in her unit, she said, only two were likely to leave the
hospital for any length of time. More typical was an almost
eighty-year-old woman at the end of her life, with irreversible
congestive heart failure, who was in the I.C.U. for the second time in
three weeks, drugged to oblivion and tubed in most natural orifices and a
few artificial ones. Or the seventy-year-old with a cancer that had
metastasized to her lungs and bone, and a fungal pneumonia that arises
only in the final phase of the illness. She had chosen to forgo
treatment, but her oncologist pushed her to change her mind, and she was
put on a ventilator and antibiotics. Another woman, in her eighties,
with end-stage respiratory and kidney failure, had been in the unit for
two weeks. Her husband had died after a long illness, with a feeding
tube and a tracheotomy, and she had mentioned that she didn’t want to
die that way. But her children couldn’t let her go, and asked to proceed
with the placement of various devices: a permanent tracheotomy, a
feeding tube, and a dialysis catheter. So now she just lay there
tethered to her pumps, drifting in and out of consciousness.
Almost
all these patients had known, for some time, that they had a terminal
condition. Yet they—along with their families and doctors—were
unprepared for the final stage. “We are having more conversation now
about what patients want for the end of their life, by far, than they
have had in all their lives to this point,” my friend said. “The problem
is that’s way too late.” In 2008, the national Coping with Cancer
project published a study showing that terminally ill cancer patients
who were put on a mechanical ventilator, given electrical defibrillation
or chest compressions, or admitted, near death, to intensive care had a
substantially worse quality of life in their last week than those who
received no such interventions. And, six months after their death, their
caregivers were three times as likely to suffer major depression.
Spending one’s final days in an I.C.U. because of terminal illness is
for most people a kind of failure. You lie on a ventilator, your every
organ shutting down, your mind teetering on delirium and permanently
beyond realizing that you will never leave this borrowed, fluorescent
place. The end comes with no chance for you to have said goodbye or
“It’s O.K.” or “I’m sorry” or “I love you.”
People have concerns
besides simply prolonging their lives. Surveys of patients with terminal
illness find that their top priorities include, in addition to avoiding
suffering, being with family, having the touch of others, being
mentally aware, and not becoming a burden to others. Our system of
technological medical care has utterly failed to meet these needs, and
the cost of this failure is measured in far more than dollars. The hard
question we face, then, is not how we can afford this system’s expense.
It is how we can build a health-care system that will actually help
dying patients achieve what’s most important to them at the end of their
lives.
For all but our most recent history,
dying was typically a brief process. Whether the cause was childhood
infection, difficult childbirth, heart attack, or pneumonia, the
interval between recognizing that you had a life-threatening ailment and
death was often just a matter of days or weeks. Consider how our
Presidents died before the modern era. George Washington developed a
throat infection at home on December 13, 1799, that killed him by the
next evening. John Quincy Adams, Millard Fillmore, and Andrew Johnson
all succumbed to strokes, and died within two days. Rutherford Hayes had
a heart attack and died three days later. Some deadly illnesses took a
longer course: James Monroe and Andrew Jackson died from the months-long
consumptive process of what appears to have been tuberculosis; Ulysses
Grant’s oral cancer took a year to kill him; and James Madison was
bedridden for two years before dying of “old age.” But, as the
end-of-life researcher Joanne Lynn has observed, people usually
experienced life-threatening illness the way they experienced bad
weather—as something that struck with little warning—and you either got
through it or you didn’t.
Dying used to be accompanied by a prescribed set of customs. Guides to
ars moriendi,
the art of dying, were extraordinarily popular; a 1415 medieval Latin
text was reprinted in more than a hundred editions across Europe.
Reaffirming one’s faith, repenting one’s sins, and letting go of one’s
worldly possessions and desires were crucial, and the guides provided
families with prayers and questions for the dying in order to put them
in the right frame of mind during their final hours. Last words came to
hold a particular place of reverence.
These days, swift
catastrophic illness is the exception; for most people, death comes only
after long medical struggle with an incurable condition—advanced
cancer, progressive organ failure (usually the heart, kidney, or liver),
or the multiple debilities of very old age. In all such cases, death is
certain, but the timing isn’t. So everyone struggles with this
uncertainty—with how, and when, to accept that the battle is lost. As
for last words, they hardly seem to exist anymore. Technology sustains
our organs until we are well past the point of awareness and coherence.
Besides, how do you attend to the thoughts and concerns of the dying
when medicine has made it almost impossible to be sure who the dying
even are? Is someone with terminal cancer, dementia, incurable
congestive heart failure dying, exactly?
I once cared for a woman
in her sixties who had severe chest and abdominal pain from a bowel
obstruction that had ruptured her colon, caused her to have a heart
attack, and put her into septic shock and renal failure. I performed an
emergency operation to remove the damaged length of colon and give her a
colostomy. A cardiologist stented her coronary arteries. We put her on
dialysis, a ventilator, and intravenous feeding, and stabilized her.
After a couple of weeks, though, it was clear that she was not going to
get much better. The septic shock had left her with heart and
respiratory failure as well as dry gangrene of her foot, which would
have to be amputated. She had a large, open abdominal wound with leaking
bowel contents, which would require twice-a-day cleaning and dressing
for weeks in order to heal. She would not be able to eat. She would need
a tracheotomy. Her kidneys were gone, and she would have to spend three
days a week on a dialysis machine for the rest of her life.
She
was unmarried and without children. So I sat with her sisters in the
I.C.U. family room to talk about whether we should proceed with the
amputation and the tracheotomy. “Is she dying?” one of the sisters asked
me. I didn’t know how to answer the question. I wasn’t even sure what
the word “dying” meant anymore. In the past few decades, medical science
has rendered obsolete centuries of experience, tradition, and language
about our mortality, and created a new difficulty for mankind: how to
die.
One Friday morning this spring, I went on
patient rounds with Sarah Creed, a nurse with the hospice service that
my hospital system operates. I didn’t know much about hospice. I knew
that it specialized in providing “comfort care” for the terminally ill,
sometimes in special facilities, though nowadays usually at home. I knew
that, in order for a patient of mine to be eligible, I had to write a
note certifying that he or she had a life expectancy of less than six
months. And I knew few patients who had chosen it, except maybe in their
very last few days, because they had to sign a form indicating that
they understood their disease was incurable and that they were giving up
on medical care to stop it. The picture I had of hospice was of a
morphine drip. It was not of this brown-haired and blue-eyed former
I.C.U. nurse with a stethoscope, knocking on Lee Cox’s door on a quiet
street in Boston’s Mattapan neighborhood.
“Hi, Lee,” Creed said when she entered the house.
“Hi,
Sarah,” Cox said. She was seventy-two years old. She’d had several
years of declining health due to congestive heart failure from a heart
attack and pulmonary fibrosis, a progressive and irreversible lung
disease. Doctors tried slowing the disease with steroids, but they
didn’t work. She had cycled in and out of the hospital, each time in
worse shape. Ultimately, she accepted hospice care and moved in with her
niece for support. She was dependent on oxygen, and unable to do the
most ordinary tasks. Just answering the door, with her thirty-foot
length of oxygen tubing trailing after her, had left her winded. She
stood resting for a moment, her lips pursed and her chest heaving.
Creed
took Cox’s arm gently as we walked to the kitchen to sit down, asking
her how she had been doing. Then she asked a series of questions,
targeting issues that tend to arise in patients with terminal illness.
Did Cox have pain? How was her appetite, thirst, sleeping? Any trouble
with confusion, anxiety, or restlessness? Had her shortness of breath
grown worse? Was there chest pain or heart palpitations? Abdominal
discomfort? Trouble with bowel movements or urination or walking?
She
did have some new troubles. When she walked from the bedroom to the
bathroom, she said, it now took at least five minutes to catch her
breath, and that frightened her. She was also getting chest pain. Creed
pulled a stethoscope and a blood-pressure cuff from her medical bag.
Cox’s blood pressure was acceptable, but her heart rate was high. Creed
listened to her heart, which had a normal rhythm, and to her lungs,
hearing the fine crackles of her pulmonary fibrosis but also a new
wheeze. Her ankles were swollen with fluid, and when Creed asked for her
pillbox she saw that Cox was out of her heart medication. She asked to
see Cox’s oxygen equipment. The liquid-oxygen cylinder at the foot of
the neatly made bed was filled and working properly. The nebulizer
equipment for her inhaler treatments, however, was broken.
Given
the lack of heart medication and inhaler treatments, it was no wonder
that she had worsened. Creed called Cox’s pharmacy to confirm that her
refills had been waiting, and had her arrange for her niece to pick up
the medicine when she came home from work. Creed also called the
nebulizer supplier for same-day emergency service.
She then
chatted with Cox in the kitchen for a few minutes. Her spirits were low.
Creed took her hand. Everything was going to be all right, she said.
She reminded her about the good days she’d had—the previous weekend, for
example, when she’d been able to go out with her portable oxygen
cylinder to shop with her niece and get her hair colored.
I asked
Cox about her previous life. She had made radios in a Boston factory.
She and her husband had two children, and several grandchildren.
When
I asked her why she had chosen hospice care, she looked downcast. “The
lung doctor and heart doctor said they couldn’t help me anymore,” she
said. Creed glared at me. My questions had made Cox sad again.
“It’s
good to have my niece and her husband helping to watch me every day,”
she said. “But it’s not my home. I feel like I’m in the way.”
Creed
gave her a hug before we left, and one last reminder. “What do you do
if you have chest pain that doesn’t go away?” she asked.
“Take a nitro,” Cox said, referring to the nitroglycerin pill that she can slip under her tongue.
“And?”
“Call you.”
“Where’s the number?”
She pointed to the twenty-four-hour hospice call number that was taped beside her phone.
Outside,
I confessed that I was confused by what Creed was doing. A lot of it
seemed to be about extending Cox’s life. Wasn’t the goal of hospice to
let nature take its course?
“That’s not the goal,” Creed said.
The difference between standard medical care and hospice is not the
difference between treating and doing nothing, she explained. The
difference was in your priorities. In ordinary medicine, the goal is to
extend life. We’ll sacrifice the quality of your existence now—by
performing surgery, providing chemotherapy, putting you in intensive
care—for the chance of gaining time later. Hospice deploys nurses,
doctors, and social workers to help people with a fatal illness have the
fullest possible lives right now. That means focussing on objectives
like freedom from pain and discomfort, or maintaining mental awareness
for as long as possible, or getting out with family once in a while.
Hospice and palliative-care specialists aren’t much concerned about
whether that makes people’s lives longer or shorter.
Like many
people, I had believed that hospice care hastens death, because patients
forgo hospital treatments and are allowed high-dose narcotics to combat
pain. But studies suggest otherwise. In one, researchers followed 4,493
Medicare patients with either terminal cancer or congestive heart
failure. They found no difference in survival time between hospice and
non-hospice patients with breast cancer, prostate cancer, and colon
cancer. Curiously, hospice care seemed to extend survival for some
patients; those with pancreatic cancer gained an average of three weeks,
those with lung cancer gained six weeks, and those with congestive
heart failure gained three months. The lesson seems almost Zen: you live
longer only when you stop trying to live longer. When Cox was
transferred to hospice care, her doctors thought that she wouldn’t live
much longer than a few weeks. With the supportive hospice therapy she
received, she had already lived for a year.
Creed enters people’s
lives at a strange moment—when they have understood that they have a
fatal illness but have not necessarily acknowledged that they are dying.
“I’d say only about a quarter have accepted their fate when they come
into hospice,” she said. When she first encounters her patients, many
feel that they have simply been abandoned by their doctors. “Ninety-nine
per cent understand they’re dying, but one hundred per cent hope
they’re not,” she says. “They still want to beat their disease.” The
initial visit is always tricky, but she has found ways to smooth things
over. “A nurse has five seconds to make a patient like you and trust
you. It’s in the whole way you present yourself. I do not come in
saying, ‘I’m so sorry.’ Instead, it’s: ‘I’m the hospice nurse, and
here’s what I have to offer you to make your life better. And I know we
don’t have a lot of time to waste.’ ”
That was how she started
with Dave Galloway, whom we visited after leaving Lee Cox’s home. He was
forty-two years old. He and his wife, Sharon, were both Boston
firefighters. They had a three-year-old daughter. He had pancreatic
cancer, which had spread; his upper abdomen was now solid with tumor.
During the past few months, the pain had become unbearable at times, and
he was admitted to the hospital several times for pain crises. At his
most recent admission, about a week earlier, it was found that the tumor
had perforated his intestine. There wasn’t even a temporary fix for
this problem. The medical team started him on intravenous nutrition and
offered him a choice between going to the intensive-care unit and going
home with hospice. He chose to go home.
“I wish we’d gotten
involved sooner,” Creed told me. When she and the hospice’s supervising
doctor, Dr. JoAnne Nowak, evaluated Galloway upon his arrival at home,
he appeared to have only a few days left. His eyes were hollow. His
breathing was labored. Fluid swelled his entire lower body to the point
that his skin blistered and wept. He was almost delirious with abdominal
pain.
They got to work. They set up a pain pump with a button
that let him dispense higher doses of narcotic than he had been allowed.
They arranged for an electric hospital bed, so that he could sleep with
his back raised. They also taught Sharon how to keep Dave clean,
protect his skin from breakdown, and handle the crises to come. Creed
told me that part of her job is to take the measure of a patient’s
family, and Sharon struck her as unusually capable. She was determined
to take care of her husband to the end, and, perhaps because she was a
firefighter, she had the resilience and the competence to do so. She did
not want to hire a private-duty nurse. She handled everything, from the
I.V. lines and the bed linens to orchestrating family members to lend a
hand when she needed help.
Creed arranged for a specialized
“comfort pack” to be delivered by FedEx and stored in a
mini-refrigerator by Dave’s bed. It contained a dose of morphine for
breakthrough pain or shortness of breath, Ativan for anxiety attacks,
Compazine for nausea, Haldol for delirium, Tylenol for fever, and
atropine for drying up the upper-airway rattle that people can get in
their final hours. If any such problem developed, Sharon was instructed
to call the twenty-four-hour hospice nurse on duty, who would provide
instructions about which rescue medications to use and, if necessary,
come out to help.
Dave and Sharon were finally able to sleep
through the night at home. Creed or another nurse came to see him every
day, sometimes twice a day; three times that week, Sharon used the
emergency hospice line to help her deal with Dave’s pain crises or
hallucinations. After a few days, they were even able to go out to a
favorite restaurant; he wasn’t hungry, but they enjoyed just being
there, and the memories it stirred.
The hardest part so far,
Sharon said, was deciding to forgo the two-litre intravenous feedings
that Dave had been receiving each day. Although they were his only
source of calories, the hospice staff encouraged discontinuing them
because his body did not seem to be absorbing the nutrition. The
infusion of sugars, proteins, and fats made the painful swelling of his
skin and his shortness of breath worse—and for what? The mantra was live
for now. Sharon had balked, for fear that she’d be starving him. The
night before our visit, however, she and Dave decided to try going
without the infusion. By morning, the swelling was markedly reduced. He
could move more, and with less discomfort. He also began to eat a few
morsels of food, just for the taste of it, and that made Sharon feel
better about the decision.
When we arrived, Dave was making his
way back to bed after a shower, his arm around his wife’s shoulders and
his slippered feet taking one shuffling step at a time.
“There’s nothing he likes better than a long hot shower,” Sharon said. “He’d live in the shower if he could.”
Dave
sat on the edge of his bed in fresh pajamas, catching his breath, and
then Creed spoke to him as his daughter, Ashlee, ran in and out of the
room in her beaded pigtails, depositing stuffed animals in her dad’s
lap.
“How’s your pain on a scale of one to ten?” Creed asked.
“A six,” he said.
“Did you hit the pump?”
He didn’t answer for a moment. “I’m reluctant,” he admitted.
“Why?” Creed asked.
“It feels like defeat,” he said.
“Defeat?”
“I don’t want to become a drug addict,” he explained. “I don’t want to need this.”
Creed
got down on her knees in front of him. “Dave, I don’t know anyone who
can manage this kind of pain without the medication,” she said. “It’s
not defeat. You’ve got a beautiful wife and daughter, and you’re not
going to be able to enjoy them with the pain.”
“You’re right about that,” he said, looking at
Ashlee as she gave him a little horse. And he pressed the button.
Dave
Galloway died one week later—at home, at peace, and surrounded by
family. A week after that, Lee Cox died, too. But, as if to show just
how resistant to formula human lives are, Cox had never reconciled
herself to the incurability of her illnesses. So when her family found
her in cardiac arrest one morning they followed her wishes and called
911 instead of the hospice service. The emergency medical technicians
and firefighters and police rushed in. They pulled off her clothes and
pumped her chest, put a tube in her airway and forced oxygen into her
lungs, and tried to see if they could shock her heart back. But such
efforts rarely succeed with terminal patients, and they did not succeed
with her.
Hospice has tried to offer a new ideal for how we die.
Although not everyone has embraced its rituals, those who have are
helping to negotiate an
ars moriendi for our age. But doing so
represents a struggle—not only against suffering but also against the
seemingly unstoppable momentum of medical treatment.
Just
before Thanksgiving of 2007, Sara Monopoli, her husband, Rich, and her
mother, Dawn Thomas, met with Dr. Marcoux to discuss the options she had
left. By this point, Sara had undergone three rounds of chemotherapy
with limited, if any, effect. Perhaps Marcoux could have discussed what
she most wanted as death neared and how best to achieve those wishes.
But the signal he got from Sara and her family was that they wished to
talk only about the next treatment options. They did not want to talk
about dying.
Recently, I spoke to Sara’s husband and her parents.
Sara knew that her disease was incurable, they pointed out. The week
after she was given the diagnosis and delivered her baby, she spelled
out her wishes for Vivian’s upbringing after she was gone. She had told
her family on several occasions that she did not want to die in the
hospital. She wanted to spend her final moments peacefully at home. But
the prospect that those moments might be coming soon, that there might
be no way to slow the disease, “was not something she or I wanted to
discuss,” her mother said.
Her father, Gary, and her twin sister,
Emily, still held out hope for a cure. The doctors simply weren’t
looking hard enough, they felt. “I just couldn’t believe there wasn’t
something,” Gary said. For Rich, the experience of Sara’s illness had
been disorienting: “We had a baby. We were young. And this was so
shocking and so odd. We never discussed stopping treatment.”
Marcoux
took the measure of the room. With almost two decades of experience
treating lung cancer, he had been through many of these conversations.
He has a calm, reassuring air and a native Minnesotan’s tendency to
avoid confrontation or overintimacy. He tries to be scientific about
decisions.
“I know that the vast majority of my patients are
going to die of their disease,” he told me. The data show that, after
failure of second-line chemotherapy, lung-cancer patients rarely get any
added survival time from further treatments and often suffer
significant side effects. But he, too, has his hopes.
He told them
that, at some point, “supportive care” was an option for them to think
about. But, he went on, there were also experimental therapies. He told
them about several that were under trial. The most promising was a
Pfizer drug that targeted one of the mutations found in her cancer’s
cells. Sara and her family instantly pinned their hopes on it. The drug
was so new that it didn’t even have a name, just a number—PF0231006—and
this made it all the more enticing.
There were a few hovering
issues, including the fact that the scientists didn’t yet know the safe
dose. The drug was only in a Phase I trial—that is, a trial designed to
determine the toxicity of a range of doses, not whether the drug worked.
Furthermore, a test of the drug against her cancer cells in a petri
dish showed no effect. But Marcoux didn’t think that these were decisive
obstacles—just negatives. The critical problem was that the rules of
the trial excluded Sara because of the pulmonary embolism she had
developed that summer. To enroll, she would need to wait two months, in
order to get far enough past the episode. In the meantime, he suggested
trying another conventional chemotherapy, called Navelbine. Sara began
the treatment the Monday after Thanksgiving.
It’s worth pausing to consider what had just happened. Step by step, Sara ended up on a
fourth
round of chemotherapy, one with a minuscule likelihood of altering the
course of her disease and a great likelihood of causing debilitating
side effects. An opportunity to prepare for the inevitable was forgone.
And it all happened because of an assuredly normal circumstance: a
patient and family unready to confront the reality of her disease.
I
asked Marcoux what he hopes to accomplish for terminal lung-cancer
patients when they first come to see him. “I’m thinking, Can I get them a
pretty good year or two out of this?” he said. “Those are
my
expectations. For me, the long tail for a patient like her is three to
four years.” But this is not what people want to hear. “They’re thinking
ten to twenty years. You hear that time and time again. And I’d be the
same way if I were in their shoes.”
You’d think doctors would be
well equipped to navigate the shoals here, but at least two things get
in the way. First, our own views may be unrealistic. A study led by the
Harvard researcher Nicholas Christakis asked the doctors of almost five
hundred terminally ill patients to estimate how long they thought their
patient would survive, and then followed the patients. Sixty-three per
cent of doctors overestimated survival time. Just seventeen per cent
underestimated it. The average estimate was five hundred and thirty per
cent too high. And, the better the doctors knew their patients, the more
likely they were to err.
Second, we often avoid voicing even
these sentiments. Studies find that although doctors usually tell
patients when a cancer is not curable, most are reluctant to give a
specific prognosis, even when pressed. More than forty per cent of
oncologists report offering treatments that they believe are unlikely to
work. In an era in which the relationship between patient and doctor is
increasingly miscast in retail terms—“the customer is always
right”—doctors are especially hesitant to trample on a patient’s
expectations. You worry far more about being overly pessimistic than you
do about being overly optimistic. And talking about dying is enormously
fraught. When you have a patient like Sara Monopoli, the last thing you
want to do is grapple with the truth. I know, because Marcoux wasn’t
the only one avoiding that conversation with her. I was, too.
Earlier that summer, a
PET
scan had revealed that, in addition to her lung cancer, she also had
thyroid cancer, which had spread to the lymph nodes of her neck, and I
was called in to decide whether to operate. This second, unrelated
cancer was in fact operable. But thyroid cancers take years to become
lethal. Her lung cancer would almost certainly end her life long before
her thyroid cancer caused any trouble. Given the extent of the surgery
that would have been required, and the potential complications, the best
course was to do nothing. But explaining my reasoning to Sara meant
confronting the mortality of her lung cancer, something that I felt ill
prepared to do.
Sitting in my clinic, Sara did not seem
discouraged by the discovery of this second cancer. She seemed
determined. She’d read about the good outcomes from thyroid-cancer
treatment. So she was geared up, eager to discuss when to operate. And I
found myself swept along by her optimism. Suppose I was wrong, I
wondered, and she proved to be that miracle patient who survived
metastatic lung cancer?
My solution was to avoid the subject
altogether. I told Sara that the thyroid cancer was slow-growing and
treatable. The priority was her lung cancer, I said. Let’s not hold up
the treatment for that. We could monitor the thyroid cancer and plan
surgery in a few months.
I saw her every six weeks, and noted her
physical decline from one visit to the next. Yet, even in a wheelchair,
Sara would always arrive smiling, makeup on and bangs bobby-pinned out
of her eyes. She’d find small things to laugh about, like the tubes that
created strange protuberances under her dress. She was ready to try
anything, and I found myself focussing on the news about experimental
therapies for her lung cancer. After one of her chemotherapies seemed to
shrink the thyroid cancer slightly, I even raised with her the
possibility that an experimental therapy could work against both her
cancers, which was sheer fantasy. Discussing a fantasy was easier—less
emotional, less explosive, less prone to misunderstanding—than
discussing what was happening before my eyes.
Between the lung
cancer and the chemo, Sara became steadily sicker. She slept most of the
time and could do little out of the house. Clinic notes from December
describe shortness of breath, dry heaves, coughing up blood, severe
fatigue. In addition to the drainage tubes in her chest, she required
needle-drainage procedures in her abdomen every week or two to relieve
the severe pressure from the litres of fluid that the cancer was
producing there.
A CT scan in December showed that the lung
cancer was spreading through her spine, liver, and lungs. When we met in
January, she could move only slowly and uncomfortably. Her lower body
had become swollen. She couldn’t speak more than a sentence without
pausing for breath. By the first week of February, she needed oxygen at
home to breathe. Enough time had elapsed since her pulmonary embolism,
however, that she could start on Pfizer’s experimental drug. She just
needed one more set of scans for clearance. These revealed that the
cancer had spread to her brain, with at least nine metastatic growths
across both hemispheres. The experimental drug was not designed to cross
the blood-brain barrier. PF0231006 was not going to work.
And
still Sara, her family, and her medical team remained in battle mode.
Within twenty-four hours, Sara was scheduled to see a radiation
oncologist for whole-brain radiation to try to reduce the metastases. On
February 12th, she completed five days of radiation treatment, which
left her immeasurably fatigued, barely able get out of bed. She ate
almost nothing. She weighed twenty-five pounds less than she had in the
fall. She confessed to Rich that, for the past two months, she had
experienced double vision and was unable to feel her hands.
“Why didn’t you tell anyone?” he asked her.
“I just didn’t want to stop treatment,” she said. “They would make me stop.”
She
was given two weeks to recover her strength after the radiation. Then
she would be put on another experimental drug from a small biotech
company. She was scheduled to start on February 25th. Her chances were
rapidly dwindling. But who was to say they were zero?
In 1985, the
paleontologist and writer Stephen Jay Gould published an extraordinary
essay entitled “The Median Isn’t the Message,” after he had been given a
diagnosis, three years earlier, of abdominal mesothelioma, a rare and
lethal cancer usually associated with asbestos exposure. He went to a
medical library when he got the diagnosis and pulled out the latest
scientific articles on the disease. “The literature couldn’t have been
more brutally clear: mesothelioma is incurable, with a median survival
of only eight months after discovery,” he wrote. The news was
devastating. But then he began looking at the graphs of the
patient-survival curves.
Gould was a naturalist, and more inclined
to notice the variation around the curve’s middle point than the middle
point itself. What the naturalist saw was remarkable variation. The
patients were not clustered around the median survival but, instead,
fanned out in both directions. Moreover, the curve was skewed to the
right, with a long tail, however slender, of patients who lived many
years longer than the eight-month median. This is where he found solace.
He could imagine himself surviving far out in that long tail. And he
did. Following surgery and experimental chemotherapy, he lived twenty
more years before dying, in 2002, at the age of sixty, from a lung
cancer that was unrelated to his original disease.
“It has
become, in my view, a bit too trendy to regard the acceptance of death
as something tantamount to intrinsic dignity,” he wrote in his 1985
essay. “Of course I agree with the preacher of Ecclesiastes that there
is a time to love and a time to die—and when my skein runs out I hope to
face the end calmly and in my own way. For most situations, however, I
prefer the more martial view that death is the ultimate enemy—and I find
nothing reproachable in those who rage mightily against the dying of
the light.”
I think of Gould and his essay every time I have a
patient with a terminal illness. There is almost always a long tail of
possibility, however thin. What’s wrong with looking for it? Nothing, it
seems to me, unless it means we have failed to prepare for the outcome
that’s vastly more probable. The trouble is that we’ve built our medical
system and culture around the long tail. We’ve created a
multitrillion-dollar edifice for dispensing the medical equivalent of
lottery tickets—and have only the rudiments of a system to prepare
patients for the near-certainty that those tickets will not win. Hope is
not a plan, but hope is our plan.
For Sara,
there would be no miraculous recovery, and, when the end approached,
neither she nor her family was prepared. “I always wanted to respect her
request to die peacefully at home,” Rich later told me. “But I didn’t
believe we could make it happen. I didn’t know how.”
On the
morning of Friday, February 22nd, three days before she was to start her
new round of chemo, Rich awoke to find his wife sitting upright beside
him, pitched forward on her arms, eyes wide, struggling for air. She was
gray, breathing fast, her body heaving with each open-mouthed gasp. She
looked as if she were drowning. He tried turning up the oxygen in her
nasal tubing, but she got no better.
“I can’t do this,” she said, pausing between each word. “I’m scared.”
He
had no emergency kit in the refrigerator. No hospice nurse to call. And
how was he to know whether this new development was fixable?
We’ll
go to the hospital, he told her. When he asked if they should drive,
she shook her head, so he called 911, and told her mother, Dawn, who was
in the next room, what was going on. A few minutes later, firemen
swarmed up the stairs to her bedroom, sirens wailing outside. As they
lifted Sara into the ambulance on a stretcher, Dawn came out in tears.
“We’re
going to get ahold of this,” Rich told her. This was just another trip
to the hospital, he said to himself. The doctors would figure this out.
At
the hospital, Sara was diagnosed with pneumonia. That troubled the
family, because they thought they’d done everything to keep infection at
bay. They’d washed hands scrupulously, limited visits by people with
young children, even limited Sara’s time with baby Vivian if she showed
the slightest sign of a runny nose. But Sara’s immune system and her
ability to clear her lung secretions had been steadily weakened by the
rounds of radiation and chemotherapy as well as by the cancer.
In
another way, the diagnosis of pneumonia was reassuring, because it was
just an infection. It could be treated. The medical team started Sara on
intravenous antibiotics and high-flow oxygen through a mask. The family
gathered at her bedside, hoping for the antibiotics to work. This could
be reversible, they told one another. But that night and the next
morning her breathing only grew more labored.
“I can’t think of a single funny thing to say,” Emily told Sara as their parents looked on.
“Neither
can I,” Sara murmured. Only later did the family realize that those
were the last words they would ever hear from her. After that, she began
to drift in and out of consciousness. The medical team had only one
option left: to put her on a ventilator. Sara was a fighter, right? And
the next step for fighters was to escalate to intensive care.
This
is a modern tragedy, replayed millions of times over. When there is no
way of knowing exactly how long our skeins will run—and when we imagine
ourselves to have much more time than we do—our every impulse is to
fight, to die with chemo in our veins or a tube in our throats or fresh
sutures in our flesh. The fact that we may be shortening or worsening
the time we have left hardly seems to register. We imagine that we can
wait until the doctors tell us that there is nothing more they can do.
But rarely is there nothing more that doctors can do. They can
give toxic drugs of unknown efficacy, operate to try to remove part of
the tumor, put in a feeding tube if a person can’t eat: there’s always
something. We want these choices. We don’t want anyone—certainly not
bureaucrats or the marketplace—to limit them. But that doesn’t mean we
are eager to make the choices ourselves. Instead, most often, we make no
choice at all. We fall back on the default, and the default is: Do
Something. Is there any way out of this?
In late 2004, executives
at Aetna, the insurance company, started an experiment. They knew that
only a small percentage of the terminally ill ever halted efforts at
curative treatment and enrolled in hospice, and that, when they did, it
was usually not until the very end. So Aetna decided to let a group of
policyholders with a life expectancy of less than a year receive hospice
services
without forgoing other treatments. A patient like Sara
Monopoli could continue to try chemotherapy and radiation, and go to the
hospital when she wished—but also have a hospice team at home focussing
on what she needed for the best possible life now and for that morning
when she might wake up unable to breathe. A two-year study of this
“concurrent care” program found that enrolled patients were much more
likely to use hospice: the figure leaped from twenty-six per cent to
seventy per cent. That was no surprise, since they weren’t forced to
give up anything. The surprising result was that they did give up
things. They visited the emergency room almost half as often as the
control patients did. Their use of hospitals and I.C.U.s dropped by more
than two-thirds. Over-all costs fell by almost a quarter.
This
was stunning, and puzzling: it wasn’t obvious what made the approach
work. Aetna ran a more modest concurrent-care program for a broader
group of terminally ill patients. For these patients, the traditional
hospice rules applied—in order to qualify for home hospice, they had to
give up attempts at curative treatment. But, either way, they received
phone calls from palliative-care nurses who offered to check in
regularly and help them find services for anything from pain control to
making out a living will. For these patients, too, hospice enrollment
jumped to seventy per cent, and their use of hospital services dropped
sharply. Among elderly patients, use of intensive-care units fell by
more than eighty-five per cent. Satisfaction scores went way up. What
was going on here? The program’s leaders had the impression that they
had simply given patients someone experienced and knowledgeable to talk
to about their daily needs. And somehow that was enough—just talking.
The
explanation strains credibility, but evidence for it has grown in
recent years. Two-thirds of the terminal-cancer patients in the Coping
with Cancer study reported having had no discussion with their doctors
about their goals for end-of-life care, despite being, on average, just
four months from death. But the third who did were far less likely to
undergo cardiopulmonary resuscitation or be put on a ventilator or end
up in an intensive-care unit. Two-thirds enrolled in hospice. These
patients suffered less, were physically more capable, and were better
able, for a longer period, to interact with others. Moreover, six months
after the patients died their family members were much less likely to
experience persistent major depression. In other words, people who had
substantive discussions with their doctor about their end-of-life
preferences were far more likely to die at peace and in control of their
situation, and to spare their family anguish.
Can mere
discussions really do so much? Consider the case of La Crosse,
Wisconsin. Its elderly residents have unusually low end-of-life hospital
costs. During their last six months, according to Medicare data, they
spend half as many days in the hospital as the national average, and
there’s no sign that doctors or patients are halting care prematurely.
Despite average rates of obesity and smoking, their life expectancy
outpaces the national mean by a year.
I spoke to Dr. Gregory
Thompson, a critical-care specialist at Gundersen Lutheran Hospital,
while he was on I.C.U. duty one recent evening, and he ran through his
list of patients with me. In most respects, the patients were like those
found in any I.C.U.—terribly sick and living through the most perilous
days of their lives. There was a young woman with multiple organ failure
from a devastating case of pneumonia, a man in his mid-sixties with a
ruptured colon that had caused a rampaging infection and a heart attack.
Yet these patients were completely different from those in other
I.C.U.s I’d seen: none had a terminal disease; none battled the final
stages of metastatic cancer or untreatable heart failure or dementia.
To
understand La Crosse, Thompson said, you had to go back to 1991, when
local medical leaders headed a systematic campaign to get physicians and
patients to discuss end-of-life wishes. Within a few years, it became
routine for all patients admitted to a hospital, nursing home, or
assisted-living facility to complete a multiple-choice form that boiled
down to four crucial questions. At this moment in your life, the form
asked:
1. Do you want to be resuscitated if your heart stops?
2. Do you want aggressive treatments such as intubation and mechanical ventilation?
3. Do you want antibiotics?
4. Do you want tube or intravenous feeding if you can’t eat on your own?
By
1996, eighty-five per cent of La Crosse residents who died had written
advanced directives, up from fifteen per cent, and doctors almost always
knew of and followed the instructions. Having this system in place,
Thompson said, has made his job vastly easier. But it’s not because the
specifics are spelled out for him every time a sick patient arrives in
his unit.
“These things are not laid out in stone,” he told me.
Whatever the yes/no answers people may put on a piece of paper, one will
find nuances and complexities in what they mean. “But, instead of
having the discussion when they get to the I.C.U., we find many times it
has already taken place.”
Answers to the list of questions
change as patients go from entering the hospital for the delivery of a
child to entering for complications of Alzheimer’s disease. But, in La
Crosse, the system means that people are far more likely to have talked
about what they want and what they don’t want before they and their
relatives find themselves in the throes of crisis and fear. When wishes
aren’t clear, Thompson said, “families have also become much more
receptive to having the discussion.” The discussion, not the list, was
what mattered most. Discussion had brought La Crosse’s end-of-life costs
down to just over half the national average. It was that simple—and
that complicated.
One Saturday morning last
winter, I met with a woman I had operated on the night before. She had
been undergoing a procedure for the removal of an ovarian cyst when the
gynecologist who was operating on her discovered that she had metastatic
colon cancer. I was summoned, as a general surgeon, to see what could
be done. I removed a section of her colon that had a large cancerous
mass, but the cancer had already spread widely. I had not been able to
get it all. Now I introduced myself. She said a resident had told her
that a tumor was found and part of her colon had been excised.
Yes,
I said. I’d been able to take out “the main area of involvement.” I
explained how much bowel was removed, what the recovery would be
like—everything except how much cancer there was. But then I remembered
how timid I’d been with Sara Monopoli, and all those studies about how
much doctors beat around the bush. So when she asked me to tell her more
about the cancer, I explained that it had spread not only to her
ovaries but also to her lymph nodes. I said that it had not been
possible to remove all the disease. But I found myself almost
immediately minimizing what I’d said. “We’ll bring in an oncologist,” I
hastened to add. “Chemotherapy can be very effective in these
situations.”
She absorbed the news in silence, looking down at the
blankets drawn over her mutinous body. Then she looked up at me. “Am I
going to die?”
I flinched. “No, no,” I said. “Of course not.”
A
few days later, I tried again. “We don’t have a cure,” I explained.
“But treatment can hold the disease down for a long time.” The goal, I
said, was to “prolong your life” as much as possible.
I’ve seen
her regularly in the months since, as she embarked on chemotherapy. She
has done well. So far, the cancer is in check. Once, I asked her and her
husband about our initial conversations. They don’t remember them very
fondly. “That one phrase that you used—‘prolong your life’—it just . .
.” She didn’t want to sound critical.
“It was kind of blunt,” her husband said.
“It sounded harsh,” she echoed. She felt as if I’d dropped her off a cliff.
I
spoke to Dr. Susan Block, a palliative-care specialist at my hospital
who has had thousands of these difficult conversations and is a
nationally recognized pioneer in training doctors and others in managing
end-of-life issues with patients and their families. “You have to
understand,” Block told me. “A family meeting is a procedure, and it
requires no less skill than performing an operation.”
One basic
mistake is conceptual. For doctors, the primary purpose of a discussion
about terminal illness is to determine what people want—whether they
want chemo or not, whether they want to be resuscitated or not, whether
they want hospice or not. They focus on laying out the facts and the
options. But that’s a mistake, Block said.
“A large part of the
task is helping people negotiate the overwhelming anxiety—anxiety about
death, anxiety about suffering, anxiety about loved ones, anxiety about
finances,” she explained. “There are many worries and real terrors.” No
one conversation can address them all. Arriving at an acceptance of
one’s mortality and a clear understanding of the limits and the
possibilities of medicine is a process, not an epiphany.
There is
no single way to take people with terminal illness through the process,
but, according to Block, there are some rules. You sit down. You make
time. You’re not determining whether they want treatment X versus Y.
You’re trying to learn what’s most important to them under the
circumstances—so that you can provide information and advice on the
approach that gives them the best chance of achieving it. This requires
as much listening as talking. If you are talking more than half of the
time, Block says, you’re talking too much.
The words you use
matter. According to experts, you shouldn’t say, “I’m sorry things
turned out this way,” for example. It can sound like pity. You should
say, “I wish things were different.” You don’t ask, “What do you want
when you are dying?” You ask, “If time becomes short, what is most
important to you?”
Block has a list of items that she aims to
cover with terminal patients in the time before decisions have to be
made: what they understand their prognosis to be; what their concerns
are about what lies ahead; whom they want to make decisions when they
can’t; how they want to spend their time as options become limited; what
kinds of trade-offs they are willing to make.
Ten years ago, her
seventy-four-year-old father, Jack Block, a professor emeritus of
psychology at the University of California at Berkeley, was admitted to a
San Francisco hospital with symptoms from what proved to be a mass
growing in the spinal cord of his neck. She flew out to see him. The
neurosurgeon said that the procedure to remove the mass carried a
twenty-per-cent chance of leaving him quadriplegic, paralyzed from the
neck down. But without it he had a hundred-per-cent chance of becoming
quadriplegic.
The evening before surgery, father and daughter
chatted about friends and family, trying to keep their minds off what
was to come, and then she left for the night. Halfway across the Bay
Bridge, she recalled, “I realized, ‘Oh, my God, I don’t know what he
really wants.’ ” He’d made her his health-care proxy, but they had
talked about such situations only superficially. So she turned the car
around.
Going back in “was really uncomfortable,” she said. It
made no difference that she was an expert in end-of-life discussions. “I
just felt awful having the conversation with my dad.” But she went
through her list. She told him, “ ‘I need to understand how much you’re
willing to go through to have a shot at being alive and what level of
being alive is tolerable to you.’ We had this quite agonizing
conversation where he said—and this totally shocked me—‘Well, if I’m
able to eat chocolate ice cream and watch football on TV, then I’m
willing to stay alive. I’m willing to go through a lot of pain if I have
a shot at that.’
“I would never have expected him to say that,”
Block went on. “I mean, he’s a professor emeritus. He’s never watched a
football game in my conscious memory. The whole picture—it wasn’t the
guy I thought I knew.” But the conversation proved critical, because
after surgery he developed bleeding in the spinal cord. The surgeons
told her that, in order to save his life, they would need to go back in.
But he had already become nearly quadriplegic and would remain severely
disabled for many months and possibly forever. What did she want to do?
“I
had three minutes to make this decision, and, I realized, he had
already made the decision.” She asked the surgeons whether, if her
father survived, he would still be able to eat chocolate ice cream and
watch football on TV. Yes, they said. She gave the O.K. to take him back
to the operating room.
“If I had not had that conversation with
him,” she told me, “my instinct would have been to let him go at that
moment, because it just seemed so awful. And I would have beaten myself
up. Did I let him go too soon?” Or she might have gone ahead and sent
him to surgery, only to find—as occurred—that he survived only to go
through what proved to be a year of “very horrible rehab” and
disability. “I would have felt so guilty that I condemned him to that,”
she said. “But there was no decision for me to make.” He had decided.
During
the next two years, he regained the ability to walk short distances. He
required caregivers to bathe and dress him. He had difficulty
swallowing and eating. But his mind was intact and he had partial use of
his hands—enough to write two books and more than a dozen scientific
articles. He lived for ten years after the operation. This past year,
however, his difficulties with swallowing advanced to the point where he
could not eat without aspirating food particles, and he cycled between
hospital and rehabilitation facilities with the pneumonias that
resulted. He didn’t want a feeding tube. And it became evident that the
battle for the dwindling chance of a miraculous recovery was going to
leave him unable ever to go home again. So, this past January, he
decided to stop the battle and go home.
“We started him on hospice
care,” Block said. “We treated his choking and kept him comfortable.
Eventually, he stopped eating and drinking. He died about five days
later.”
Susan Block and her father had the
conversation that we all need to have when the chemotherapy stops
working, when we start needing oxygen at home, when we face high-risk
surgery, when the liver failure keeps progressing, when we become unable
to dress ourselves. I’ve heard Swedish doctors call it a “breakpoint
discussion,” a systematic series of conversations to sort out when they
need to switch from fighting for time to fighting for the other things
that people value—being with family or travelling or enjoying chocolate
ice cream. Few people have this discussion, and there is good reason for
anyone to dread these conversations. They can unleash difficult
emotions. People can become angry or overwhelmed. Handled poorly, the
conversations can cost a person’s trust. Handled well, they can take
real time.
I spoke to an oncologist who told me about a
twenty-nine-year-old patient she had recently cared for who had an
inoperable brain tumor that continued to grow through second-line
chemotherapy. The patient elected not to attempt any further
chemotherapy, but getting to that decision required hours of
discussion—for this was not the decision he had expected to make. First,
the oncologist said, she had a discussion with him alone. They reviewed
the story of how far he’d come, the options that remained. She was
frank. She told him that in her entire career she had never seen
third-line chemotherapy produce a significant response in his type of
brain tumor. She had looked for experimental therapies, and none were
truly promising. And, although she was willing to proceed with
chemotherapy, she told him how much strength and time the treatment
would take away from him and his family.
He did not shut down or
rebel. His questions went on for an hour. He asked about this therapy
and that therapy. And then, gradually, he began to ask about what would
happen as the tumor got bigger, the symptoms he’d have, the ways they
could try to control them, how the end might come.
The oncologist
next met with the young man together with his family. That discussion
didn’t go so well. He had a wife and small children, and at first his
wife wasn’t ready to contemplate stopping chemo. But when the oncologist
asked the patient to explain in his own words what they’d discussed,
she understood. It was the same with his mother, who was a nurse.
Meanwhile, his father sat quietly and said nothing the entire time.
A few days later, the patient returned to talk to the oncologist. “There should be something. There
must
be something,” he said. His father had shown him reports of cures on
the Internet. He confided how badly his father was taking the news. No
patient wants to cause his family pain. According to Block, about
two-thirds of patients are willing to undergo therapies they don’t want
if that is what their loved ones want.
The oncologist went to the
father’s home to meet with him. He had a sheaf of possible trials and
treatments printed from the Internet. She went through them all. She was
willing to change her opinion, she told him. But either the treatments
were for brain tumors that were very different from his son’s or else he
didn’t qualify. None were going to be miraculous. She told the father
that he needed to understand: time with his son was limited, and the
young man was going to need his father’s help getting through it.
The
oncologist noted wryly how much easier it would have been for her just
to prescribe the chemotherapy. “But that meeting with the father was the
turning point,” she said. The patient and the family opted for hospice.
They had more than a month together before he died. Later, the father
thanked the doctor. That last month, he said, the family simply focussed
on being together, and it proved to be the most meaningful time they’d
ever spent.
Given how prolonged some of these conversations have
to be, many people argue that the key problem has been the financial
incentives: we pay doctors to give chemotherapy and to do surgery, but
not to take the time required to sort out when doing so is unwise. This
certainly is a factor. (The new health-reform act was to have added
Medicare coverage for these conversations, until it was deemed funding
for “death panels” and stripped out of the legislation.) But the issue
isn’t merely a matter of financing. It arises from a still unresolved
argument about what the function of medicine really is—what, in other
words, we should and should not be paying for doctors to do.
The
simple view is that medicine exists to fight death and disease, and that
is, of course, its most basic task. Death is the enemy. But the enemy
has superior forces. Eventually, it wins. And, in a war that you cannot
win, you don’t want a general who fights to the point of total
annihilation. You don’t want Custer. You want Robert E. Lee, someone who
knew how to fight for territory when he could and how to surrender when
he couldn’t, someone who understood that the damage is greatest if all
you do is fight to the bitter end.
More often, these days,
medicine seems to supply neither Custers nor Lees. We are increasingly
the generals who march the soldiers onward, saying all the while, “You
let me know when you want to stop.” All-out treatment, we tell the
terminally ill, is a train you can get off at any time—just say when.
But for most patients and their families this is asking too much. They
remain riven by doubt and fear and desperation; some are deluded by a
fantasy of what medical science can achieve. But our responsibility, in
medicine, is to deal with human beings as they are. People die only
once. They have no experience to draw upon. They need doctors and nurses
who are willing to have the hard discussions and say what they have
seen, who will help people prepare for what is to come—and to escape a
warehoused oblivion that few really want.
Sara
Monopoli had had enough discussions to let her family and her oncologist
know that she did not want hospitals or I.C.U.s at the end—but not
enough to have learned how to achieve this. From the moment she arrived
in the emergency room that Friday morning in February, the train of
events ran against a peaceful ending. There was one person who was
disturbed by this, though, and who finally decided to intercede—Chuck
Morris, her primary physician. As her illness had progressed through the
previous year, he had left the decision-making largely to Sara, her
family, and the oncology team. Still, he had seen her and her husband
regularly, and listened to their concerns. That desperate morning,
Morris was the one person Rich called before getting into the ambulance.
He headed to the emergency room and met Sara and Rich when they
arrived.
Morris said that the pneumonia might be treatable. But,
he told Rich, “I’m worried this is it. I’m really worried about her.”
And he told him to let the family know that he said so.
Upstairs
in her hospital room, Morris talked with Sara and Rich about the ways in
which the cancer had been weakening her, making it hard for her body to
fight off infection. Even if the antibiotics halted the infection, he
said, he wanted them to remember that there was nothing that would stop
the cancer.
Sara looked ghastly, Morris told me. “She was so short
of breath. It was uncomfortable to watch. I still remember the
attending”—the oncologist who admitted her for the pneumonia treatment.
“He was actually kind of rattled about the whole case, and for him to be
rattled is saying something.”
After her parents arrived, Morris
talked with them, too, and when they were finished Sara and her family
agreed on a plan. The medical team would continue the antibiotics. But
if things got worse they would not put her on a breathing machine. They
also let him call the palliative-care team to visit. The team prescribed
a small dose of morphine, which immediately eased her breathing. Her
family saw how much her suffering diminished, and suddenly they didn’t
want any more suffering. The next morning, they were the ones to hold
back the medical team.
“They wanted to put a catheter in her, do this other stuff to her,” her mother, Dawn, told me. “I said, ‘
No.
You aren’t going to do anything to her.’ I didn’t care if she wet her
bed. They wanted to do lab tests, blood-pressure measurements, finger
sticks. I was very uninterested in their bookkeeping. I went over to see
the head nurse and told them to stop.”
In the previous three
months, almost nothing we’d done to Sara—none of our chemotherapy and
scans and tests and radiation—had likely achieved anything except to
make her worse. She may well have lived longer without any of it. At
least she was spared at the very end.
That day, Sara fell into
unconsciousness as her body continued to fail. Through the next night,
Rich recalled, “there was this awful groaning.” There is no prettifying
death. “Whether it was with inhaling or exhaling, I don’t remember, but
it was horrible, horrible, horrible to listen to.”
Her father and
her sister still thought that she might rally. But when the others had
stepped out of the room, Rich knelt down weeping beside Sara and
whispered in her ear. “It’s O.K. to let go,” he said. “You don’t have to
fight anymore. I will see you soon.”
Later that morning, her breathing changed, slowing. At 9:45
A.M., Rich said, “Sara just kind of startled. She let a long breath out. Then she just stopped.”
♦
