Planning hospital discharge with the patient: I wanted to watch him another day

Another story from Dr. Maren Batalden:
A few months ago, I treated an elderly gentleman with cancer who was getting chemo, so his immune system was compromised.  He got a urinary infection and ended up in the ICU [intensive care unit] with sepsis, needing specialized attention to support a very low blood pressure.  He got better surprisingly quickly with antibiotics and fluids.  He came to the regular medical unit late the following afternoon where I became the doctor in charge of his care.  I met him the next morning and he told me he felt fine and was ready to go home.  He’d been quite sick, so I wanted to watch him another day, especially because we didn’t yet have the culture results from the bacteria which caused his infection and we didn’t know which antibiotic would be safe for discharge.

I explained my concerns to him. “When will you have the culture results that describe my bacteria?” he asked.  I said tomorrow.  So he asked, “How about if you give me a dose in the hospital of an IV antibiotic that works for 24 hours, give me a prescription that is your best guess about an antibiotic pill that you THINK will treat my infection, let me go home, and call me tomorrow if we need to change the antibiotics. If we need to change it, we’ll change it then.”  I thought it was a great idea!  He said, “Why should I sit in the hospital waiting for lab results?!  If I feel terrible, I’ll come back.”  He did great!  I called him the next morning; the culture results confirmed that his bacteria was sensitive to the antibiotics I had prescribed. He felt well and continued his recovery without complication at home.

It used to be that when it was time to discharge someone, I figured it was largely my decision to make.  Many patients assume the same.  “You’re the expert, doc.  You tell me.”  But I have come to realize that it’s NOT my decision; it’s a shared decision. I understand what the labs and the physical exam are telling me.  But I don’t know really know how the patient feels compared to his or her usual state; I don’t really know what kinds of supports they have or don’t have at home.  Decisions about whether and when to admit a patient to the hospital and whether or when to discharge have to made together. To my surprise this framework has pretty significantly changed my practice.  I find myself keeping people in the hospital for another day or two, when left to my own devices, I might have discharged them earlier, or vice versa.  The best care, I have come to believe, is always “co-produced.”  

Thanks to Dr. Maren Batalden for her story. Read her article in the British Medical Journal on co-production of medical care.

Outside the chemo treatment room: Insurance denials

From Nicholas Kristof's column:

I regularly receive heartbreaking emails from readers simultaneously combating the predation of disease and insurers. One correspondent, Linda, told me how she had been diagnosed earlier this year with abdominal and bladder cancer – leading to battles with her insurance company.

"I will never forget standing outside the chemo treatment room knowing that the medication needed to save my life was only a few feet away, but that because I had private insurance it wasn't available to me," Linda wrote. "I read a comment from someone saying that they didn't want a faceless government bureaucrat deciding if they would or would not get treatment. Well, a faceless bureaucrat from my private insurance made the decision that I wouldn't get treatment and that I wasn't worth saving."

Advice: Insist that your representatives in Congress vote for a public plan that will cover people like Linda.

Read another story on an insurer’s denial of chemotherapy treatment.

Thanks to Nicholas Kristof for the source column in today's New York Times.

In New York, it was considered very stylish: Hair after chemotherapy

K. Jensen writes:

Dear Diary,
I lost my hair during chemotherapy treatments for breast cancer. When it came back, it grew first on the top of my head and then later filled in on the sides.

In New York, my new crew cut was considered very stylish – for women. People would stop me on the street, compliment me and ask me where I had it done. When another cancer patient also asked me about my "new do," I tried to explain: "It's chemo."

"Kimo?" she said. "He does a great job. Where does he work? What's his number?"

Read another surprising story about chemotherapy’s effect on hair. Thanks to Ms. Jensen, whose diary entry appeared in the Metropolitan Diary in the New York Times of June 17.

They declined to pay for chemotherapy: Overturning an insurer's denial

David Foglesong, a history professor from Montgomery Township, N.J., began searching medical databases soon after Horizon Blue Cross Blue Shield of New Jersey declined to pay for a targeted chemotherapy treatment for his wife, RoseMary. During one library visit, he found a new study that showed the treatment had helped patients with conditions similar to his wife's disease, advanced sarcoma that had spread to her liver.

The couple, advised by Patient Advocate Foundation, a nonprofit group, solicited new letters from RoseMary's doctors, and her primary oncologist argued on her behalf in a conference call with the insurance company's reviewers in June. The company reversed its earlier decision, and RoseMary, 49, got the treatment in July.

Horizon officials say the procedure was initially denied because it was deemed experimental and not the standard for Ms. Foglesong's condition. The company said a review committee reversed that decision because of the "whole totality of her case," including the medical literature.

Advice for denied insurance beneficiaries: Look into it like David did, and consider filing an appeal with your insurer.

Read another insurer denial story.

Thanks to Anna Wilde Mathews for the source story in the Wall St. Journal's Personal Finance section today.

I've done a lot: A prostate cancer patient's choice

Thirty years ago Forbes Hill of Brooklyn learned he had prostate cancer. At age 50, with a young wife and a fear of the common side effects of treatment—incontinence and impotence---he chose what oncologists call "watchful waiting." For 12 years, Forbes was fine. Then in 1990 his PSA count, a measure of cancer activity, began to rise, and he had radiation therapy. That dropped the count to near zero. In 2000, with the count up again, he chose hormone therapy, which worked for a while.

Three years ago, with his PSA level going through the roof, he learned that the cancer had spread to his bones and liver. It was time for chemotherapy, which Forbes said he knew could not cure him but might slow the cancer's progress and prolong his life.

His oncologist was candid but not very specific. His doctor told him that with advanced metastatic hormone-resistant like his, 90 percent of patients die within five years no matter what the doctors do, and about 10 percent survive six or more years.

"I took that kind of hard," said Forbes, an associate professor of media studies at Queens College. "I always thought I would live to 90, but I guess now I won't."

He just started radiation to the brain, perhaps with infusions of an experimental drug afterward. "I'll try chemo for six months, but if it gets too uncomfortable and inconvenient….,” he said, trailing off. "Having lived 80 years, I've done a lot. I don't have a reason to think I've been badly treated by life."

Forbes seems ready for a time when treating his cancer is no longer the right approach, replaced instead by a focus on preparing for the end of his life.

But doctors who have studied patients like Forbes say that often they do not know when to say enough is enough. In a desperate effort to live a month, a week, even a day longer, they choose to continue costly, toxic treatments and deny themselves and their families the comfort care that hospice can provide.

Advice: Make your own choice. Live life on your own terms.

Read another story about a cancer patient’s attitudes toward the illness.

Thanks to Jane Brody for the source article in the Aug. 18 issue of the New York Times.

I knew I had to live: A pregnant breast cancer survivor

Patty Murray, an attorney in Buffalo, was 35, very healthy and pregnant with her third child. Nearing the 17th week of her pregnancy, she noticed a lump under her arm.

An ultrasound exam revealed that she had aggressive breast cancer, which had spread to her lymph nodes. At that time, in 1995, little was known about cancer treatment of pregnant women, but her oncologist told her the chemo would have no effect on her fetus; if anything, the baby would be born without hair.

Surprisingly, according to a Norwegian study of 45,000 women diagnosed with cancer, pregnancy does not affect survival rates. Some women say that being pregnant increases their will to survive. "The baby inside me created a necessity for living," she said. "Whenever I felt him moving around, I knew that I had to live."

Ten long seconds after her baby boy was born, she heard him cry. "It was the most wonderful sound I ever heard," she said. The doctors brought him over, and unlike her first two children at birth, he had a full head of hair.

Twelve years later, in 1997 Patty founded Hope for Two…the Pregnant with Cancer Network. Its mission is to connect cancer patients.

Advice: Live like Patty, who created an organization to help people overcome what she overcame.

Thanks to Pamela Paul for the source article in the New York Times Magazine of August 31.

It's an inconvenience, but the alternative is death: Paying for cancer drugs

William Dexter, a 67-year-old retired Air Force sergeant and mail carrier, had been coming to his doctor's office for monthly intravenous immune globulin infusions to bolster his immune system after a bone-marrow transplant, radiation and chemotherapy and other drugs for non-Hodgkin's lymphoma, a cancer of the lymph system.

The infusions can leave patients drained and shivering, with low blood pressure. William liked getting them in his doctor's office, where nurses comforted him with coffee, blankets, and chats about his dogs and military history.

But with the gap between his Medicare policy and his doctor's expenses, the doctor's medical practice was losing about $500 on each infusion. Now, instead of one monthly doctor visit, William makes two 90-minute round trips: one to the doctor for a checkup and to open the IV port in his chest, and another to the hospital, where the four-hour infusion involves more delays and less comfort. "It's an inconvenience, but the alternative is death," William says.
"I knew the doctor had to do it to stay in business."

Advice to cancer patients who need to take costly drugs: Ask about the drug company's financial aid programs.

Read another chemotherapy story.

Thanks to Marilyn Chase for the source article in today's Wall St. Journal.

The furthest you could be from courageous: Attitudes toward one's own cancer

Although public figures like Teddy Kennedy promote enduring impressions of the stalwart, pumped-up spirit, Dr. Joseph Finns says patients themselves often describe a more nuanced, evolving journey.

When Robert Kosinski was told he had a tumor on top of his brain stem, entwined with his optic nerve, "Everything went dark, went blank," he recalled. "I was overwhelmed by the idea that I had a brain tumor stuck inside me. The train ride home lasted so long and I just kept wondering, 'How long do I have to live?'"

Faced with potentially harrowing repercussions from a biopsy, Robert, a husband and father in Jersey City, said he felt depressed and ultimately alone with his decisions.

He chose not to have the biopsy, and went through chemotherapy. He would endure a dozen blood transfusions. Optimism, or even stoicism, were not part of his emotional makeup during those grueling months. "I never felt brave or courageous," he said. "I don't know what that means. I was scared. I was the furthest you could be from courageous."

That was 15 years ago. Now 61, he paints and attends a monthly support group, where he ascribes his odds-defying survival to luck and medical expertise, rather than personal will. "Some people in my group don't want to hear the upbeat scenario," he said. "The way they're coping is completely the opposite because they feel they may not make it."

Dr. Finns' advice to patients: There's no scripted way to handle this. Write your own script based on your own narrative.

Read a story about Teddy Kennedy’s brain cancer.

Thanks to Jan Hoffman for her source article in the June 1 issue of the NY Times.

He has resumed athletic activities: Attitudes toward one's own cancer

Brian Wickman, a manager at a luxury hotel in Manhattan, needed to refrain his loved ones' language. Two years ago, an oncologist told him there was little published data about the aggressive tumor on his ankle because it was so rare and because "no one wants to publish when all the subjects die." A month later, Brian, then 30, a skier and a rock climber, had his left leg amputated. He was also found to have thyroid cancer. He reacted severely to chemotherapy, and spent two months in intensive care.

His awestruck friends would say, "You're so brave, I don't know how you do it; you're my inspiration." "They would put me on a pedestal," Brian said. "That doesn't allow me to be human an in pain, angry or depressed."

His email messages reveal a spirit of great equanimity and eloquence. He now wears a prosthesis and has resumed athletic activities, and will attend graduate school in the fall for a joint degree in social work and divinity.

But in his darker moments, he refused to construct a front. He would write bluntly about feeling grumpy, frustrated and afraid nobody would date him. "This is not a call for pity responses," he would add. "Just let me be where I am."

Advice to friends and families of cancer patients: Try to just let them be where they are.

Read another story about the role of hope.

Thanks to Jan Hoffman for the source article in the NY Times of June 1.

As if they were old friends: Compassionate physicians' cancer care

Four years ago, my sister found out she had two types of cancer at the same time. It was like being hit by lightning twice.

She needed chemotherapy and radiation, a huge operation, more chemotherapy and then a smaller operation. All on all, the treatment took about a year. Thin to begin with, she lost 30 pounds. The chemo caused cracks in her fingers, dry eyes, anemia and mouth sores so painful they kept her awake at night. A lot of her hair fell out. The radiation burned her skin. Bony, red-eyed, weak and frightfully pale, she tied scarves on her head, plastered her fingers with Band-Aids and somehow toughed it out.

She saw two doctors quite often. The radiation oncologist would sling her arm around my sister's frail shoulders and walk her down the corridor as if they were old friends. The medical oncologist kept a close watch on the side effects, suggested remedies, reminded my sister she had good odds of beating the cancer and reassured her that the hair would grow back. (It did.)

People in my family aren’t huggy-kissy types, but my sister greatly appreciated the warmth and concern of those two women. She trusted them completely, and their advice. Now healthy, she says their compassion played a big part in helping her get through a difficult and frightening time.

Bedside manner can go a long way toward helping people with cancer understand their treatment, stick with it, cope better and maybe even fare better medically.

Advice: Find a doctor whose skill set includes compassion.

Browse for related stories in the index at the very bottom of this page, or read a story on the role of compassion in healing.

Thanks to Denise Grady for the source story in the NY Times of Jan. 8.

Attaboys from his teammates: Jon Lester’s Win over lymphoma

After six chemotherapy treatments over the winter, he was declared free of the anaplastic large cell lymphoma that had interrupted his solidly successful rookie season as a pitcher with the Boston Red Sox.

The Red Sox had gone slowly in bringing back Jon Lester, waiting until last night to give him the ball. In the sober words of the New York Times journalist Bill Finley, "he made a dramatic and effective return….[H]is ability to get outs has apparently not been diminished by his battle with cancer."

At the beginning of the game he received a warm round of applause from fans of both the Cleveland Indians and Red Sox. His teammates gave him good run support, scoring four times in the first inning.

Six innings later, he was pulled from the game, ahead, 5 – 2. He got slaps on the back and attaboys from his teammates. The Red Sox fans in the Cleveland stadium cheered, and Manager Tony Francona congratulated him.

Lester was supportive to others, wearing a red wristband in support of the Lester Project, an offshoot of another cancer charity, the Jimmy Fund.

Advice to cancer patients: Get a group of supporters who are as fanatic as Red Sox Nation.

Read another of our cancer survivor stories, or read the source stories by Nick Cafardo, Amalie Benjamin, and Bill Finley in the Sports sections of today’s Boston Globe and New York Times.

Sorry, you didn’t have cancer: A misdiagnosis story

Suffering from chest pain and difficulty breathing, Muriel Lavallee went to the hospital, and was sent to another hospital. There, doctors drew fluid from around her heart, which the pathologist reported was cancerous. Doctors immediately began chemotherapy, in November 2004. Over the next four months, she was hospitalized five times, spending 42 days in the hospital, with various infections, weakness, and outbreaks of the C. difficile bacterium. She became so ill that the doctor decided to stop the chemotherapy.

A week later, she was shocked to hear, "Sorry, you didn’t have cancer. You can go home now."

Then 59, she had lost her hair, and a sense of feeling in her hands and legs. Muriel is still suffering the loss of feeling, which prevents her from returning to her job at WalMart. She is seeking $155,000 from the Quebec Superior Court, which is scheduled to hear her lawsuit in July.

Advice to chemo patients: Ask the doctor the false positive rate of the test that showed you have cancer, and consider asking for an independent retest.

Read a cancer advocacy story, or read Dene Moore’s source story in the Toronto Star.

What chemo dose should my 150-pound Golden Retriever take?: An adverse drug reaction story

Dr. Lawrence Burgh has a sober outlook on life. A 48-year-old physician whose career has centered on treating seriously ill patients, he himself was diagnosed with cancer in December 2006. He has begun dosing himself with DCA, a simple laboratory chemical that has never before been used to treat cancer in people.

Last month, he learned the cancer in his thigh had spread to his lungs. "My prognosis is very poor," he says. "Standard chemotherapy would give me only a slim chance of survival at five years." So he turned to DCA, after reading about the promising lab experiments in New Scientist (20 January, p 13).

But Lawrence (a pseudonym) has yet to see DCA make any impact on his cancer. Medical scans on 19 March showed that the primary tumour in his thigh has shrunk, and is less active, but this may be due to the delayed effects of radiotherapy and chemotherapy Burgh had in January. The number of metastatic tumors in his lungs has not changed since last month, and they are larger and more active. "These results are very preliminary," he stresses, "but I was really hoping for better results." On 21 March, he stopped taking the drug after noticing symptoms which by 24 March included a numbness in his hands, which he believes to be a sign of a disease of the nervous system (neuropathy), and a hypoglycemic attack. He advises other people with cancer not to self-medicate with DCA except under medical supervision. "I am concerned others may try this drug on their own in desperation," he says. "DCA is chemotherapy, a serious drug with potentially serious side effects."

DCA is not patentable as a medication, so there is no incentive for pharmaceutical companies to run the clinical trials necessary to make DCA legal as a cancer treatment. So two Web sites sprang up: one with research papers and chat rooms to discuss DCA, and another site selling DCA supposedly for use in pets with terminal cancer. Both sites are run by a California man who operates a pest-control company. The FDA is investigating both web sites because DCA hasn't gone through clinical trials or been approved for human use. Even marketing DCA for pets is illegal. Even so, researchers have been getting emails from people asking for dosage information for, say, a 150-pound "Golden Retriever."

Advice to patients with advanced cancer: Read Linda Geddes’ article in the New Scientist, the research, and the web site of the Abigail Alliance, which advocates faster drug development for critically ill patients, then discuss it with your oncologist.

Read another chemo story.

Thanks to April Rabkin of Mother Jones for summarizing the New Scientist article.

But the magazine said he was a Super Doctor: An overdose lawsuit

The cancer doctor’s web site touts the fact that he was named in Texas Monthly as a so-called “Super Doctor" in December, 2005. But earlier that year he had lost the biggest malpractice suit in the county’s history--$600 million!--and a month later, another patient died from a chemo overdose under his care.

How does a physician become a Texas Monthly “Super Doctor?” Or for that matter, a Best Doctor for D Magazine?

“Super Doctors” is actually the trademark of Minneapolis-based Key Professional Media, which has made a business of publishing “Super” lists. Key Media is secretive about how its “Super Doctors” are chosen, and would not disclose how many doctors vote, saying that number is “proprietary.” Every voter can vote as many as ten times. Lorelei Calvert of Texas Monthly says Key basically buys a section of the magazine, labels it a “special advertising section” and sells the advertising space to doctors.

D Magazine asks “Which Dallas Doctors would you trust to send your loved ones to for medical care?” Rogers says the D survey is announced to hospital PR staffs before it is mailed to doctors. This allows them to stump for votes among their own staffs. Each surveyed doctor could cast as many as 117 votes over 39 different specialties. D says it got about 25,000 responses from 1,014 doctors, and selected 640 people as “Best Doctors.” Doctors are offered the chance to buy an ad in D Magazine to “maximize their exposure” when they’re notified they’ve been chosen as a “Best Doctor.” It is the best selling issue of the year.

Advice on finding a super doctor: Start by checking the profile yourself, if you can. In Massachusetts, you should first look them up in the Board of Registration in Medicine’s web site.

Read the article by Byron Harris.

Now, a Model Patient: Partnering with your doctor

Velda Model had had surgery—twice—to remove a tumor from her breast. Then she endured chemotherapy that made her fingers and toes numb, and radiation that made her tired all the time. She was given Aromasin pills to prevent the cancer from coming back, but they made her body ache, and her heart race. So she stopped taking them, saying “I can’t live like this.” Her cancer doctor (an oncologist) eventually convinced her that the hormone’s benefits outweighed the discomfort.

Now she contacts the doctor’s office when she experiences severe side effects, allowing the doctor to discuss alternatives. She has been able to reduce the flu-like symptoms of the hormone treatment by taking the pills after dinner rather than before dinner.

That partnership between the patient and physician is our goal. In her case, that’s especially important, because women with hormone-responsive early breast cancer who do not take five years of hormone therapy pills increase their risk of recurrence by 50%.

Advice to patients with side effects from drugs: Tell your doctor, and explore alternatives with him or her.

Read Sunday’s Boston Globe article by Scott Allen, or the full study by my buddy Dr. Saul Weingart et al in the British Medical Journal.

His Handwriting Could Be on our Wall: Overdose lawsuit

On Wednesday I described the chemo overdose that took the life of Armando Castellanos. Two features of his story are especially troubling: His family wasn’t told of the error. And his story is almost untold.

In the days following Castellanos’ death, the medical center was knocked not just for the medical error but also not alerting his next of kin about the Cisplatin overdose on Aug. 12 until just before he died. Medical personnel reportedly discovered the mistake — 500 mg instead of 50 mg — but stayed mum while Castellanos’ health declined. In the end, his family was informed of the dosage before they removed him from life support. The hospital did not inform the Coroner about the overdose, though the law requires the Coroner to investigate all questionable deaths in the county.

Second, Armando’s story has been reported only in his hometown newspaper. We need to tell his story more widely, to give each victim a name, to honor him, and learn from this error to protect ourselves. The Japanese quality improvement experts say, Every defect is a treasure. We say, Amen, and each person is a treasure. If we don’t learn from his story, we’ll be condemned to repeat his experience….

Advice: Get an advocate who can help you know if an error is occurring, and help you handle it.

Tell his story.

Read Michelle Durand’s newspaper story.

Handwriting: A chemo overdose lawsuit

The trouble began with a doctor’s illegible handwriting, continued with clarification of the order not being recorded and a pharmacist misreading the medicine dose on the prescription, according to the report by the expert investigators at the Institute for Safe Medication Practices. Armando Castellanos’ doctor had written a prescription for 50 milligrams of Cisplatin as part of Armando’s chemotherapy. But he received 10 times that dose, causing his death several days later. The family of the middle-aged Californian man received a settlement from the medical center.

Advice: Read the doctor’s handwriting on your prescription when you get it, and ask the doctor to rewrite clearly anything you can’t read.

Read another overdose story, or read more in Michelle Durand's newspaper article last month.

Warn your friends and family.