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.

Take heart: Compassionate care at the end of life

Jay's story:
Nine years ago, my wife lost her battle with cancer. She also endured harsh, unfeeling treatment at work. The week we learned that additional treatment would not prolong her life, she came home in tears due to a nasty comment from a co-worker.

The next day, I accompanied my wife to her office and asked the supervisor for permission to address those co-workers. The supervisor was clueless about what had been going on. I said, "My name is Jay and I’m Jena's husband. I love her with all my heart, but we found out this week she is dying and there is nothing more that can be done.” The silence was deafening. I took my wife's hand, told her I loved her and said if she didn't want to work there anymore, she could come home so I could take care of her. With tears in her eyes, she replied, "Let's go."

By the time we arrived home, our answering machine was full of kind messages from her co-workers. The supervisor came by a week later to see how she was doing and informed us that three employees had been fired for "creating a hostile work environment."

My wife died in my arms six weeks later. She had forgiven them and so have I. To all the survivors out there, take heart. Every day that goes by will give you a little more strength to get through.

Advice to cancer patients facing tough choices: Follow love.

Read another story of another tough choice at the end of life. Jay's letter to Annie's Mailbox appeared in today's Boston Globe.

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.

Cancer is not a football game: Teddy Kennedy's brain cancer

The mantra of "fighting" cancer drives me nuts. The caring behind it is wonderful; the metaphor is not. Cancer is not a football game. The fighting metaphor is insidious because it implies that if you fight, you can "win." And if you don't fight hard enough, you are therefore a "loser."

The challenge for Teddy Kennedy, just diagnosed with brain cancer, is to figure out where the locus of our limited control lies. He can't change the fact of his diagnosis. But he can, and already has, chosen his doctors wisely. He is putting his resources now, appropriately, into learning about his cancer, what drives it, and what might slow it down. He may have to choose additional doctors, anywhere in the world. That's great. That's the stuff that really is under his control. As is choosing how to spend his time and energy. He is already doing all the right things.

So, I would change the mantra to "Breathe, Ted, breathe." Sail your boat. Kiss your wife and your kids. Trust your doctors. Keep doing the work you love.

Advice to cancer patients: Focus, like Teddy, on what is within your control.

Read last week’s post on Teddy.

Thanks to Judy Foreman for the source article in the May 27 issue of the Boston Globe.

Only these four words of welcome: The role of prayer

It was one of those beautiful winter days after Hanukkah….I sat waiting in the outer office. Finally, I was ushered in. There were no smiles, no polite exchanges, nothing that softened the numbing reality I was about to face. Only these four words of welcome: "Your wife has cancer."

That day in the surgeon's office and the journey of the spirit that followed were the greatest challenges of my personal faith in God – and that of my family – that we ever experienced. It is part of this challenge that I share here. I offer a brief glimpse into our own struggle, hoping that it might help you with yours.

Three items proved most helpful and effective. One: we discovered that all human beings, even rabbis and their families, struggle, have doubts, and have lapses of faith. Two: like others, our faith was in desperate need of repair. It was my wife's courage and conviction in the face of her illness that allowed us to pray unabashedly to God. Through prayer and the process of spiritual renewal, our faith was literally restored to us. Three: we learned that we all need a rabbi, someone to lead us through our crises of faith, a madrich ruchani (spiritual mentor) to support us in our journeys. The rabbis of the Talmud wrote, "One cannot fully understand Torah unless one has stumbled in it." Sheryl’s cancer caused us all to stumble, but we did not fall.

We don’t know where the cancer came from, but during her illness, Sheryl taught our family that faith means not to passively accept what life deals you – whatever it is. Rather, we must seize life and struggle with it, using the force of disease against itself, not against the self – which we are prone to do. Physicians do not set the parameters for our struggle. We set the terms, always striving to remain in control, trying not to allow the disease to get the upper hand. This posture is bolstered by faith in ourselves, reflective of faith in God and the covenant we share with the Divine. Faith is the force in the world that makes for healing.

Frequently, we think of prayer in terms of the "how-to" of the liturgical process: what to say, how and when to say it, and which ritual accompaniments are required. Our family learned that we could not nurture our individual relationships with Almighty God without essential prayer. In the face of cancer, perhaps even because of it, we learned to allow the words articulated by those who came before us to truly sing through our own souls – while adding our own – and then our prayer became the powerful force in the universe that we always hoped and prayed it would be.

A spiritual teacher helps us to learn how to reach out to others, inward to self, and upward to God in order to gain inner strength, tranquility of spirit, and healing of body and soul. Like so many others, our family had taken its spiritual journey for granted. Through our encounter with Sheryl’s illness, we were reminded about it

I thank God each day that we are alive to celebrate. For us, that indeed is the miracle that we recall not only during the eight days of Hanukkah, but every day throughout the year. May you join us in the celebration, finding strength in the journey and faith along the way.

Advice: Pray with your loved ones for strength.

Read another story about faith.

Thanks to Rabbi Kerry Olitzky for the source, “Facing Cancer as a Family.”

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.

You’ve got to get up and make changes: Activist after mother’s cancer misdiagnosis

As a young woman growing up in segregated Lynchburg, Virginia, Vivian Pinn saw how doctors misdiagnosed a cancerous tumor in her mother's leg, which eventually led to her death.

"I identify with the struggle that women have had to make to get proper health care. I saw a doctor talk down to my mother, telling her that she needed orthopedic shoes because he didn't properly diagnose her condition," she recollected.

"I consider myself to be an activist. I believe that you can't just sit back and complain about things. You've got to get up and make changes," she said. Fueling her lifelong crusade for the inclusion of women and minorities in health care research has been her own personal commitment to social justice.

She graduated from medical school, and later served as Chair of the Pathology Department at Howard University. While at Howard, she served as president of the National Medical Association, a national organization that represents some 20,000 African-American physicians. Later she led the Office of Research on Women's Health at the National Institutes of Health.

The experience of teaching and managing a department at a predominantly Black institution proved to be a gratifying experience. She said she especially enjoyed mentoring and teaching at Howard, and maintains close contact with her former students.

"I've enjoyed teaching and being a role model to students. It comes easily to me because I know how difficult it can be when there's no one around like yourself to be supportive," she said.

Advice: Turn your anger at medical errors into helping others live.

Read another of our activist stories, or read Ronald Roach’s source story.

Each of the three placed the blame for her ordeal on another party in the courtroom: Cancer misdiagnosis lawsuit

Michelle Kachurak knew someone was responsible, and went to court to figure it out.

Doctors had detected high levels of hCG in the Pennsylvania woman’s blood, in fall 2000. Pregnancy and certain types of cancer are the only sources of HCG. In hindsight, it is clear that a rare protein in her body interfered with the test, yielding a false positive result. Though she likely never had any hCG in her system, doctors diagnosed her with choriocarcinoma, a life-threatening reproductive cancer associated with the uterine wall.

She began chemotherapy that September. The hCG never seemed to fully leave her system, even with increasingly aggressive chemotherapy.

She researched her symptoms on the Internet, and insisted on a urine test, which occurred in February 2001. The urine test showed no hCG. Unfortunately, her doctors failed to properly review the test results, and she only obtained the results months later. In the meantime, her chemotherapy continued—through a total of 12 rounds, over seven months.

Each of the three placed the blame for her ordeal on another party in the courtroom. The lawyer for the doctor who overlooked the urine test blames the doctor who made the misdiagnosis. The lawyer for the doctor who made the misdiagnosis blames Abbott Laboratories, which makes the blood test. Lawyers for Abbott Laboratories blamed both doctors, saying the product’s instructions clearly warned against using it to diagnose cancer. The doctors filed suit against Abbott, but have since dropped the lawsuit.

Advice: Read about your lab tests in TauMed’s free directory, and make sure you get a copy of the test results. After doing Internet research like Michelle, you may need to insist on additional tests.

Read another cancer story, or read Wade Malcolm’s source story.

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.

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.