Brita Hudson-Smith went to her first meeting with her new oncologist in December armed with family.
She knew she would need help hearing, really hearing, what the doctor had to say about her shocking diagnosis: lung cancer.
The doctor entered the exam room at Penn Presbyterian Medical Center to find a crowd. Hudson-Smith, a nonsmoker whose work had involved encouraging healthy lifestyles, was there with her husband, her sisters, and her daughter.
With Hudson-Smith's diagnosis, they all hurtled into the excruciatingly complex realm of modern medical decision-making. Hudson-Smith knew she would need their help to digest mountains of information and to support her emotionally as she chose how to fight for her life.
In truth, she would need more.
But like thousands of others, she and her family - still emotionally raw and shaken from heartbreaking news - would largely be on their own to devise a crash course in her rare, relatively slow-growing cancer and figure out what to do.
It hasn't been easy. Hudson-Smith has second-guessed her decisions and felt torn between her doctor and her family, all the while worrying about the cost of her care. She has found the amount of information overwhelming. It's been hard to know what to believe, whom to trust.
"I call it a 24/7 kind of thing. All day long, you're thinking about 'What should I do? Who should I listen to?' And some days you just have to let it go," said Hudson-Smith, who is 64 and lives in Philadelphia.
"It just adds more stress because it's not clear, you know. Somebody can present you with information, but information is one thing. Truth is another."
A demand for more
Not that long ago, cancer patients expected their doctors to tell them what to do. Maybe there was only one treatment for a disease anyway. They could accept it or go home and wait to die.
Then patients began to see themselves as consumers. They demanded that their paternalistic doctors start giving them more say about what would happen to their bodies and their lives. They started shopping around and discovered how different doctors and hospitals are.
Now many find that this sea of change in the doctor-patient relationship has left them feeling responsible for decisions of monumental consequence. As death looms, patients may gain a heightened sense of control when they choose their treatments. But they sometimes pay for that control with mental anguish that doctors and hospitals are barely beginning to address.
Partly that's because there are more choices. Cancer research has exploded, and the number of options has exploded with it. Prostate-cancer patients can choose from two forms of surgery, three types of radiation, hormone therapy, cryosurgery, and high-intensity focused ultrasound, or, sometimes, they can do nothing. For other cancers, there are multiple chemotherapy drugs, new forms of radiation, clinical trials, vaccines. People with what one patient called the "uglier" cancers - the fatal, incurable ones - navigate a minefield of rock-and-hard-place choices between older treatments that don't work very well and cutting-edge experiments with little track record.
Patients trying to compare these options find a head-spinning array of Web sites hosted by competing hospitals, advocacy and support groups, alternative-medicine devotees, for-profit companies, and quacks. Even with all that, it's hard to know what will work for you and how it will make you feel.
It's a trigger for big-league anxiety when people are already awash in fear.
Overwhelmed is the word that comes up over and over as patients and medical experts describe how these medical dilemmas - choices where there often is no right answer - make patients and their families feel.
On the emotional extremes of choice, Kristina Orfali, a bioethicist at Columbia University, has studied how parents in the United States and France handled the decision to withdraw life support for their sick babies. In the United States, parents made the decision. In France, doctors did. The French parents coped better.
"This autonomy model is so prevalent in the U.S. that I'm not sure physicians understand what a burden this is," said Orfali, who was trained in France and called one of her papers "Autonomy Gone Awry."
Asked if patient empowerment had gone too far, Ronald Myers, a behavioral epidemiologist who studies decision-making at Thomas Jefferson University, said: "I don't think it's gone too far. I think it's gone too fast."
Most patients still wouldn't want someone else deciding for them whether to, say, remove their ovaries to prevent cancer or be the first to try a surgical technique, medical researchers say. They want to sign off on their treatment, even when the doctor has made a clear recommendation, as doctors still do with many cancers.
But there is increasing recognition that people need more emotional support and education than they are getting as they face "sharing" the life-and-death decisions that cancer and other deadly diseases demand. A growing cadre of researchers is studying personal preferences, how people make decisions, and how hospitals and doctors can help. A few hospitals now make "decision support" a routine part of care for some cancers. Some for-profit companies offer online decision aids that help people evaluate treatments.
Myers, who has developed a counseling program that helps patients understand their choices and clarify their preferences, said Jefferson plans to make the program available this year to patients with gastrointestinal, genitourinary, pancreatic, or breast cancer. Fox Chase Cancer Center also plans to take decision aids it has created for some cancers mainstream in the next year.
The big problem, experts around the country say, is figuring out who will pay for the extra time it takes to help patients with their decisions.
"As the number of cancer survivors grows, I think the demand for this kind of improvement in care is going to grow," Myers said. "Perhaps funding will follow."
As recently as the 1980s, there wasn't much information about cancer available to patients, and that was OK with most of them, said Suzanne Miller, director of psychosocial and behavioral medicine at Fox Chase. "No one was expected to ask anything, and if they did, it was sort of troublesome to the system and really bad form."
Now the expectation is 180 degrees different. Patients routinely get second, third, and fourth opinions, sometimes hundreds of miles away. They e-mail their doctors daily. "You're now considered kind of deficient if you don't seek everything out, if you don't walk in with reams of paper, if you haven't been mining the Web," Miller said.
As a result, she added, patients have gone from having "no information to so much information that a normal human being trying to figure out all that information could simply not be able to do it."
"The complexity of the decisions is rising exponentially," agreed Deborah Watkins Bruner, a University of Pennsylvania Health System nurse who studies decision-making and supports patient autonomy.
"There are people that are just like, 'Just tell me what to do. Just tell me. I've tried to understand it.' "
Most people, Bruner said, want joint decision-making with their doctors. But it's getting harder for them to understand what they're doing.
First there's the sheer volume of data. Google breast cancer, for example, and you get almost 40 million links. Intrepid Web researchers quickly find this is not like reading People. They might need to understand genetics, statistics, chemistry, and biology, plus enough about medicine to evaluate potential side effects.
The vocabulary alone is too much for a lot of people. "There are 90 million English-speaking Americans who can't understand most of the health information that's given to them," said Terri Ades, director of cancer information for the American Cancer Society.
Imagine them going to clinicaltrials.gov, the National Institutes of Health's listing of clinical trials, to find what's being tested for lung cancer in Philadelphia. Among the choices are these two: "GSK1572932A Antigen-Specific Cancer Immunotherapeutic as Adjuvant Therapy in Patients With Non-Small Cell Lung Cancer" and "High-Dose or Standard-Dose Radiation Therapy and Chemotherapy in Treating Patients With Newly Diagnosed Stage III Non-Small Cell Lung Cancer That Cannot Be Removed by Surgery."
Don't expect information there that would help you choose one over the other.
In some cancers, there is a clear standard of care through several stages of treatment, experts said. Patients may up the anxietal ante by choosing a different path or visiting multiple doctors, a course that is reassuring when the doctors agree but distressing when they don't.
But even in highly treatable cancers, like prostate or early-stage breast cancer, patients may have tough choices. Radiation, surgery, or watchful waiting in one. Lumpectomy or mastectomy in the other.
Things become murkier as the cancer gets worse, the treatments get less effective, and the trade-offs get more unpleasant. "The higher the stakes, the scarier the decision," said E. Dale Collins, a breast surgeon and director of Dartmouth University's Center for Informed Choice. "The more equivalent the choices, the harder the decision."
One of the tricky things about helping people figure out what to do is how different they are.
About 40 percent of us are what Fox Chase's Miller calls blunters, people who don't want a lot of information and might ignore some of what they're told. Another 40 percent are monitors, people who drive themselves crazy trying to learn every last fact. They're never done and constantly question their decisions. The remaining 20 percent are adaptive monitors, people who gather lots of information, make a decision, and move on.
Bill, 69, a prostate-cancer patient at Fox Chase who did not want his full name used, didn't want to read a lot about his cancer. "It might scare me," he said.
He was glad that he felt such confidence in his doctor, who steered him to a combination of radiation and hormone therapy. "I didn't want to make the decision," he said. "I wanted somebody to make the decision for me."
But Niki Perry, 36, of South Philadelphia, whose malignant brain tumor was diagnosed in June 2006, has researched treatments at cancer centers throughout the United States. She rejected a second round of chemotherapy and radiation, which are often used to treat the disease, because of their side effects.
Instead, after exhaustive research into treatments around the country, she joined a vaccine trial in Pittsburgh. Her visits and consults at nearly 20 centers didn't come cheap. Even with insurance, the co-pays, travel, and mailing expenses reached about $21,000. She estimates that she spends $700 to $800 a month to participate in the trial. Her medical debit is now about $22,000. "Nobody can afford cancer," said Perry, who added that many organizations offered financial help.
She was so frustrated that doctors wouldn't tell her about trials at other hospitals that she now collects information for other patients. "I wouldn't be alive if I hadn't made the decisions I made," she said.
Even though she found the decision process "hugely overwhelming," she sees her research as a way to exert control over a frightening situation. "I'm really scared of what I don't understand, so I need to understand it, and I need to feel less helpless," she said.
Sometimes, the decisions that really bother people are not what you would expect.
June White, a 70-year-old Sicklerville woman who learned she had breast cancer in 1995, asked for chemotherapy after her lumpectomy. That's not the standard protocol, but she had a strong family history of cancer and wanted to be extra careful. After the cancer came back in 2005 and 2007, she readily accepted her doctor's recommendation to have mastectomies.
The decision she struggled with, though, was whether to be tested for a gene that increases cancer risk. The results would affect her four children, who had mixed feelings about knowing their potential fate. "It was a very pensive time," she said. "It was hard." She eventually did the test, which was negative.
Rachel Fiol, 43, of Lansdowne, has been treated for thyroid and uterine cancer and now leukemia. The decisions, she said, are sometimes "heart-rending."
She is scheduled for a bone-marrow or stem-cell transplant in July. Side effects from other treatments made that decision relatively easy.
It was much harder to stop radiation for the thyroid cancer because of side effects in 2006. "I was in so much pain. I couldn't swallow pain medications," she said. "It was the hardest decision I've ever had to make in my life. I felt like I was letting people down. . . . It was more painful to live that way than to live with cancer."
Once the decision is made, patients feel better. Bonnie Adams, 47, of New Gretna, has rectal cancer and got two different opinions from three well-respected surgeons. She chose a treatment recommended by two of the three doctors.
"When I made the decision, I was just tremendously relieved," she said. "It was a release, a letting go of everybody that was in my ears, and saying now I can go on with my life."
Brita Hudson-Smith has had clear guidance from a doctor she trusts, and still she finds herself wondering what to do.
After that meeting with her oncologist, James Stevenson, at Presbyterian, she signed on to a clinical trial of a drug. It didn't work for her. Now she's trying a cocktail of chemo drugs he recommended.
She, her sisters, and her daughter have all looked at as much information as they could handle and reached different conclusions.
They share one thing, which has colored every word they have read: their pain. "Why did this happen to our family?" asked Opal Elliott, 59, Hudson-Smith's sister. "It just feels so personal. . . . The whole family is involved once someone gets treatment."
She wants Hudson-Smith to get a second opinion at a "top gun" hospital. "I think we want validation that she's on the right track," she said.
She has read and read about treatments. "You become an Internet doctor. . . . You can stay on that Internet for hours," she said. "I'm looking for the glimmer of hope, so I don't mind reading it."
Meanwhile, her younger sister, Carmen Martin, 54, quickly decided she couldn't stand it. Hudson-Smith, who has been almost a surrogate mother to her since their mother died, was just too close.
"I cannot imagine my life without my sister," she said, her voice cracking. When she read about lung cancer, it was hard to imagine anything else. "There's not a lot of upbeat information about lung cancer," she said.
Martin decided to leave the research to others and concentrate on her sister's emotional health. She vowed to call every day. "She will never be alone," she said. "That is my promise to my sister."
Hudson-Smith's daughter, Michelle Hudson, a Philadelphia dentist, felt strongly that her mother should try alternative treatments and sent her a 400-page report on the subject. It has been tough for her to watch her mother suffer from the chemotherapy, which Hudson thinks may be doing more harm than good.
"I kind of feel not hopeless, but helpless," she said. "Every day I'm just watching to see how it's going to take an effect on her."
At her daughter's suggestion, Hudson-Smith has tried acupuncture and meditation and liked both. She has found it helpful to talk to other cancer patients at the Wellness Community, a nonprofit support organization. She has read enough to know that the drugs her doctor is using are recommended for fighting her cancer. She feels guilty about not having made an appointment for a second opinion, but she likes her doctor, who, she points out, works for Penn's Abramson Cancer Center, one of only 40 National Cancer Institute-designated comprehensive cancer centers in the country.
She already has a lot of medical appointments, and can't help but think about how much it would cost to check out other hospitals. Hudson-Smith, who is well-insured, estimates that her co-payments have already cost her $5,000 to $7,000 since her diagnosis. She's now embarking on yet another line of research: figuring out how to get some financial assistance.
She wishes someone would streamline things for people like her. She tried the National Cancer Institute's site and gave up. "Oh, my God, this is Greek to me," thought Hudson-Smith, who left college one semester short of a biology degree and has worked as director of advocacy for the American Heart Association of Pennsylvania.
"I could spend hours on the Web looking," she said, "but I don't want to spend hours. . . . I want to see where the information is really sorted out well."
Despite her doubts, she wouldn't return to the days when patients just accepted what doctors said. "The bottom line," she said, "is I have to make the final decision."