What Price, Hope? With a subtext that all would be…
Comments: 0 - Date: July 29th, 2007 - Categories: Uncategorized
What Price, Hope? With a subtext that all would be well if we just had a set of universal treatment guidelines to follow and a bottomless pit of money with which to pay for that treatment, the New York Times presents this heartbreaking story of a young mother with metastatic colon cancer. This truly is a sad case, and one that falls outside the statistical norms of colon cancer, which is a rare disease to find in people in their thirties:
Karen Pasqualetto had just given birth to her first child last July when doctors discovered she had colon cancer. She was only 35, and the disease had already spread to her liver. The months she had hoped to spend getting to know her new daughter were hijacked by illness, fear and a desperate quest to survive. For the past year, she and her relatives have felt lost, fending for themselves in a daunting medical landscape in which they struggle to make sense of conflicting advice as they race against time in hopes of saving her life.
"It's patchwork, and frustrating that there's not one person taking care of me who I can look to as my champion," Ms. Pasqualetto said recently in a telephone interview from her home near Seattle. "I don’t feel I have a doctor who is looking out for my care. My oncologist is terrific, but he’s an oncologist. The surgeon seems terrific, but I found him through my own diligence. I have no confidence in the system."
Actually, she did have doctors who were looking out for her, but she didn't like their advice. And who can blame her? She's been told that she has a terminal illness when she stands at the cusp of the best years of her life. Her first doctors told her that they could buy her time, but not cure her. And the rest of the article is about her quest for a cure. She chose to go with aggressive chemotherapy and possible surgical resection of the tumors that had spread to her liver:
She chose an oncologist at the Swedish institute Dr. Philip Gold, who brushed aside her six-month death sentence and assured her that people with stage 4 colon cancer could live three to four times that long.
“His message to me as a patient was, ‘I have a lot of tricks up my sleeve, this is what we start with, and if it doesn’t work I have this, and then I have a clinical study,’ ” Ms. Pasqualetto said. “The feeling I got was, there was hope, and a plan of attack.”
Eleven months later, after 22 courses of treatment, she gave Dr. Gold credit for keeping her alive and giving her extra time with her daughter, Isabel.
Except that the tumor board at the hospital felt that her liver tumors were too extensive to offer her any true benefit from their removal. In other words, they felt they would be selling her false hope by doing surgery. But, it's always possible to find someone who thinks he can help, if you have the ability and the will to find him:
Her oncologist in Seattle hinted that it might be too late to operate, and that surgery could even make matters worse by spreading tumor cells around inside her body. She trusted him, and the thought of leaving his care frightened her.
"It would almost be easier if there was somebody telling me what to do," she said. "But there’s nobody saying, 'This is what you should do.' "
...On June 17, a Sunday, Karen Pasqualetto, her husband and Isabel caught a red-eye flight to Baltimore. Ms. Pasqualetto made a point of bringing Isabel, 11 months, to her first appointment with Dr. Choti, hoping that the baby’s blue eyes and cheerful grin would remind him just how high the stakes were and inspire him to try even harder to save her.
She emerged from the meeting a bit wistful. Though Dr. Choti had not criticized her previous care, he did say he would have operated much sooner, after a few months of chemotherapy.
In an interview, Dr. Choti said that Ms. Pasqualetto was a borderline case because the liver tumors were so extensive, and he could understand why the doctors in Seattle had decided not to operate.
She had the operation and the surgeon pronounced it a success:
The day after surgery, Dr. Choti said, "I think we got away with quite a complex operation."
The tumors were gone, but metastatic disease can be tough to beat in the long run.
"Roughly a third of patients will remain cancer free for a long time," Dr. Choti said. "About half will still be alive after five years. In a minority, there's a long-term cure. In some, we turn it into a chronic disease, if you will. She may recur, and we might be able to reoperate. We can prolong survival significantly."
The truth is, there are no long-term survivors of metastatic colon cancer. Surgery may prolong survival, but it doesn't cure it. The survival rate for this kind of surgery is 37% at five-years and 22% at ten years, though the short term survival in some circumstances is slightly better.
But that survival comes at a price:
Karen Pasqualetto is exceptional not only for her determination and confidence in dealing with problems that would intimidate many other people, but also for her financial wherewithal. So far her treatment has cost more than $400,000, almost all of it covered by health insurance from Starbucks, where her husband works in disaster-response planning.
When she joined a cancer support group, she recalled, "It was amazing to me the different experiences people were having based on what they could afford or who their provider was. I was able to say, 'If the provider won’t pay, my family will. I don’t care, I’m going for a second opinion.'"
In the support group, it saddened her to hear other patients with advanced disease take the word of a single oncologist, because she believes that if she had done that, she would already be dead. She has come to think that survival may depend on money and access, and, she said, on "your own drive and motivation — are you Type A? — your education and your ability to sort through the medical world and the insurance world terminology."
Ms. Pasqualetto’s doctors have accepted her insurance payments, but if they had not, she said, "I would find resources. I would get people to pay. I do have resources. I have access to people who wouldn’t sit by and let me die because of $200,000."
At what point do we tell people that we will no longer sell them hope? In this vignette, there have been a succession of doctors who drew the line at various points in the "maze" of treatment options - a maze, by the way, that the patient chose to enter of her own free will. They each had different levels of tolerance for the cost of treatment vs. the benefit. And not just in financial terms. There's an emotional cost to selling false hope to people, too. Time and energy that could be spent with family or putting affairs in order are instead spent on chasing down the latest "best" treatment and dealing with its consequences and side effects.
It's never a good idea to base public policy on individual anecdotes. There will always be heartbreaking cases of illness that cry out for our empathy, but it would be fiscally impossible to pay for every possible treatment out there for every possible disease, especially treatment that is unproven. We've been down this road before, with bone marrow transplants for metastatic breast cancer. The treatment was widely publicized as a cure for breast cancer that was kept from patients only by the nefarious insurance companies. It turned out, the insurance companies were right, the treatment was ineffective.
UPDATE: In the comments, Orac says I'm wrong about curing colon cancer that has metastasized to the liver. He considers a ten year survival a cure.
Karen Pasqualetto had just given birth to her first child last July when doctors discovered she had colon cancer. She was only 35, and the disease had already spread to her liver. The months she had hoped to spend getting to know her new daughter were hijacked by illness, fear and a desperate quest to survive. For the past year, she and her relatives have felt lost, fending for themselves in a daunting medical landscape in which they struggle to make sense of conflicting advice as they race against time in hopes of saving her life.
"It's patchwork, and frustrating that there's not one person taking care of me who I can look to as my champion," Ms. Pasqualetto said recently in a telephone interview from her home near Seattle. "I don’t feel I have a doctor who is looking out for my care. My oncologist is terrific, but he’s an oncologist. The surgeon seems terrific, but I found him through my own diligence. I have no confidence in the system."
Actually, she did have doctors who were looking out for her, but she didn't like their advice. And who can blame her? She's been told that she has a terminal illness when she stands at the cusp of the best years of her life. Her first doctors told her that they could buy her time, but not cure her. And the rest of the article is about her quest for a cure. She chose to go with aggressive chemotherapy and possible surgical resection of the tumors that had spread to her liver:
She chose an oncologist at the Swedish institute Dr. Philip Gold, who brushed aside her six-month death sentence and assured her that people with stage 4 colon cancer could live three to four times that long.
“His message to me as a patient was, ‘I have a lot of tricks up my sleeve, this is what we start with, and if it doesn’t work I have this, and then I have a clinical study,’ ” Ms. Pasqualetto said. “The feeling I got was, there was hope, and a plan of attack.”
Eleven months later, after 22 courses of treatment, she gave Dr. Gold credit for keeping her alive and giving her extra time with her daughter, Isabel.
Except that the tumor board at the hospital felt that her liver tumors were too extensive to offer her any true benefit from their removal. In other words, they felt they would be selling her false hope by doing surgery. But, it's always possible to find someone who thinks he can help, if you have the ability and the will to find him:
Her oncologist in Seattle hinted that it might be too late to operate, and that surgery could even make matters worse by spreading tumor cells around inside her body. She trusted him, and the thought of leaving his care frightened her.
"It would almost be easier if there was somebody telling me what to do," she said. "But there’s nobody saying, 'This is what you should do.' "
...On June 17, a Sunday, Karen Pasqualetto, her husband and Isabel caught a red-eye flight to Baltimore. Ms. Pasqualetto made a point of bringing Isabel, 11 months, to her first appointment with Dr. Choti, hoping that the baby’s blue eyes and cheerful grin would remind him just how high the stakes were and inspire him to try even harder to save her.
She emerged from the meeting a bit wistful. Though Dr. Choti had not criticized her previous care, he did say he would have operated much sooner, after a few months of chemotherapy.
In an interview, Dr. Choti said that Ms. Pasqualetto was a borderline case because the liver tumors were so extensive, and he could understand why the doctors in Seattle had decided not to operate.
She had the operation and the surgeon pronounced it a success:
The day after surgery, Dr. Choti said, "I think we got away with quite a complex operation."
The tumors were gone, but metastatic disease can be tough to beat in the long run.
"Roughly a third of patients will remain cancer free for a long time," Dr. Choti said. "About half will still be alive after five years. In a minority, there's a long-term cure. In some, we turn it into a chronic disease, if you will. She may recur, and we might be able to reoperate. We can prolong survival significantly."
The truth is, there are no long-term survivors of metastatic colon cancer. Surgery may prolong survival, but it doesn't cure it. The survival rate for this kind of surgery is 37% at five-years and 22% at ten years, though the short term survival in some circumstances is slightly better.
But that survival comes at a price:
Karen Pasqualetto is exceptional not only for her determination and confidence in dealing with problems that would intimidate many other people, but also for her financial wherewithal. So far her treatment has cost more than $400,000, almost all of it covered by health insurance from Starbucks, where her husband works in disaster-response planning.
When she joined a cancer support group, she recalled, "It was amazing to me the different experiences people were having based on what they could afford or who their provider was. I was able to say, 'If the provider won’t pay, my family will. I don’t care, I’m going for a second opinion.'"
In the support group, it saddened her to hear other patients with advanced disease take the word of a single oncologist, because she believes that if she had done that, she would already be dead. She has come to think that survival may depend on money and access, and, she said, on "your own drive and motivation — are you Type A? — your education and your ability to sort through the medical world and the insurance world terminology."
Ms. Pasqualetto’s doctors have accepted her insurance payments, but if they had not, she said, "I would find resources. I would get people to pay. I do have resources. I have access to people who wouldn’t sit by and let me die because of $200,000."
At what point do we tell people that we will no longer sell them hope? In this vignette, there have been a succession of doctors who drew the line at various points in the "maze" of treatment options - a maze, by the way, that the patient chose to enter of her own free will. They each had different levels of tolerance for the cost of treatment vs. the benefit. And not just in financial terms. There's an emotional cost to selling false hope to people, too. Time and energy that could be spent with family or putting affairs in order are instead spent on chasing down the latest "best" treatment and dealing with its consequences and side effects.
It's never a good idea to base public policy on individual anecdotes. There will always be heartbreaking cases of illness that cry out for our empathy, but it would be fiscally impossible to pay for every possible treatment out there for every possible disease, especially treatment that is unproven. We've been down this road before, with bone marrow transplants for metastatic breast cancer. The treatment was widely publicized as a cure for breast cancer that was kept from patients only by the nefarious insurance companies. It turned out, the insurance companies were right, the treatment was ineffective.
UPDATE: In the comments, Orac says I'm wrong about curing colon cancer that has metastasized to the liver. He considers a ten year survival a cure.