Walter Miller (a pseudonym) had put together an “A” team to cure his cancer, but it was actually killing him.
On my first day of vacation this summer, I am driving on the Long Island Expressway with my family when I receive a frantic phone call. Given my reputation among friends and family as an expert on death and dying, as well as my poor ability to set limits, I often receive panicked calls on behalf of someone’s loved one in the purgatory of dying.
“Jessica, you need to talk to my friend’s wife. He’s really sick and she’s not sure what to do. Can I patch her into the call? Listen, he’s a real fighter. Don’t mention death or dying. Talk your ICU talk.”
I am an intensive care unit physician with a patient-centered philosophy of care. That means I love to rescue people from the brink of death—but only if they want me to. I’m proud of the shiny machines in my toolbox, but I’m just as quick to counsel against them if they will not help. In the world of ICU superdocs, this type of behavior is not true to form, and I have been seen as a softie, a wimp. Now, even my friend was worried I might sound like I was trying to bump off his pal.
Stretching out an organ’s expiration date isn’t necessarily what a patient is looking for. But it’s something to do.
“Alright, put her on,” I say, as I fly by the first in a series of missed exits to New Jersey. For the next 90 minutes my husband holds the phone to my ear as I try to get us to our destination.
WALTER IS A 70-year-old man, wealthy and powerful, a scion of the community. He was diagnosed with pancreatic cancer three months ago and is in the throes of an aggressive treatment plan at a highly respected New York hospital. His wife, in a panic, reports that he is vomiting, delirious, and moaning in pain. It is Sunday night and his doctor isn’t available. He’s due for his next round of chemotherapy in the morning.
I take a deep breath. This man sounds too sick to turn over in bed let alone take an hour-long car ride to a chemotherapy appointment. I suggest the wife take him to their local emergency room for symptom management. She refuses. “Walter wants his ‘A’ team at Columbia Prez.” She makes Columbia Presbyterian Hospital sound like the Ritz. “You’ve heard of Dr. B?” I haven’t, which makes her nervous, and she tosses in a few other names from the elite fighting unit they’ve assembled. “Well they’re the best, the most aggressive. That’s what Walter wants. My son-in-law knows the CEO of MD Anderson and he told us they’re the best. If I take him to the ER here, they’ll admit him and then we’ll be stuck in New Jersey. We can’t get the chemotherapy if he doesn’t come into the city.”
I ask her if they have a palliative care physician on their team to manage his symptoms, which the American Society of Clinical Oncology recommends as standard protocol for anybody receiving chemotherapy. Such brutal treatment regimens demand aggressive pain management, as any “A” team would surely know. “Walter isn’t ready for that. He really wants to fight,” she says. “Palliative Care means you’re giving up. Dr. B says we’re not there yet.”
This man’s fate unfolds in front of my eyes. There will be a gruesome scene of paramedics and ERs, with an eventual admission to an ICU. Like a panicked swimmer fighting to stay above the waves, he will muster any remaining strength to beg for more of the treatments he assumes are helping him. When he finally tires, his family will carry on fighting in keeping with his legacy. Then he will be put on life support until he dies.
Walter is being treated to death. The more I learn of his case, the clearer it becomes: His cancer was deadly from the beginning, a tangled web of spidery tissue emanating from his pancreas and melting through the surrounding tissue planes. This is not surgically treatable and chemotherapy is more likely to be burdensome than helpful. Yet the family had hunkered down with their “A” team in the swankiest hospital in the New York metropolitan area to fight. And fight they did. As Walter continued to deteriorate, he kept asking for more. And there was always more—there always is. More appointments, more chemotherapy, more promises. Ask and ye shall receive.
By now I’ve missed my third exit. My husband’s arm is numb from holding the phone and the children in the back are cranky and irritable. I’ve been asked to call the next play in a doomed game. And the “A” team is nowhere to be found.
Out of sheer exhaustion, I tell Walter’s wife the simple truth. Your husband is dying, I say. There is a stunned silence on the other end of the line. I explain that Walter has very little time left. This is a disease that has not responded to Herculean efforts, and it won’t.
But there is so much to do that can help, I tell her. His symptoms, which have been building for weeks, can be tamed. Palliative care teams bat 90 percent at conquering most of the symptoms that accompany life-limiting illnesses such as pain, nausea, vomiting, delirium, and existential angst, to name just a few. The typical “A” team, while busy fighting cancer, leaves the patient alone with their symptoms. Anything less than curing cancer seems like child’s play. But the data show that cancer patients receiving excellent palliative care may live up to a full month longer than those who continue disease-directed treatments.
Now his wife is really confused. I see that she is in a terrible position: She wants to honor her husband’s wishes to fight, but she’s no longer sure what that means.
I suggest we speak to Dr. B together. Surely the hero doctor will release this man and his wife from their suffering. Walter can only qualify for hospice—intensive symptom management at home—if there are no more plans for active treatment of his cancer. Dr. B is the key to helping this family switch the goals of care from treating the disease to improving his quality of life. But Walter’s wife is terrified that Dr. B will be upset. “He’ll feel like we’ve lost our faith in him,” she says. “He might not want to keep working with us.” I convince her that when he hears how sick her husband has become over the past several weeks he will agree that chemotherapy is no longer helpful. She is reluctant to call him.
The next morning, I leave my children in the hotel watching television and head to Walter’s house. When I see the state he’s in, I insist we call Dr. B right away. Walter’s wife doesn’t want him to know that she’s a part of this, so over the speakerphone I introduce myself as an ICU doctor who also practices palliative care. I explain how thankful the family is to him for all that he’s already done. And I tell him things have now deteriorated to the point where it seems chemotherapy is contraindicated. Does he agree?
Dr. B’s answer makes me feel that we are in two different conversations: “I’d really like to know if his abdominal pain is worsening carcinomatosis or peritonitis,” he says. But all I need from him is a simple yes or no. We don’t have a lot of time to cogitate. I try a different angle. “The family just needs to know if you think further chemotherapy is in Walter’s future right now. If not, they’ll bring in hospice. Tonight.” Now he is annoyed. “It’s up to them if they want hospice,” he says. “Whatever they want.” Now Walter’s wife is getting nervous. Her star player is restless; He may leave before the game is over. So I change course altogether. “If Walter enrolls in hospice and begins to feel better, might he be able to disenroll and come back for more chemotherapy?” But before I finish the question, Dr. B snorts. “That’s not going to happen,” he says.
Well, there you have it, I mouth to Walter’s wife. There’s your answer.
HIGH-INTENSITY CARE HAPPENS by default in this country. Rich or poor, black or white, salvageable or clearly dying, our ICUs and chemotherapy suites are ready to serve. We can keep a dying body alive for an awfully long time. I’ve watched patients’ bodies melt into their beds as they die at the end of a machine. Stretching out an organ’s expiration date isn’t necessarily what a patient is looking for. But it’s something to do.
It’s not surprising that the most privileged and powerful can get the largest portion of the Kool-Aid. These are people who have learned to bend reality to their wills, to make good things happen and bad things disappear. They convene the best teams out there and go to war. But because they’ve assembled such a powerful machine, they’re even less prepared to stop it from running amok.
Doctors don’t like to talk about death. It sounds too much like failure—and it feels mean. Patients don’t even realize there’s anything to talk about: They assume the flurried activity means they stand a fighting chance. But too often, it’s just smoke and mirrors.
That afternoon I create a different kind of “A” team for Walter. A hospital bed is whisked into his bedroom. Two palliative care nurses transfer him into it and bathe and medicate him. His eldest son arrives from Colorado that night to be at his bedside. The vomiting and delirium stop. The moaning ceases. Walter lives for another three days. He dies in his own room, holding his wife’s hand as they listen to the opera music he loved.