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Tuesday, December 30, 2008

For more than two years: Genetic tests and personalized medicine

For more than two years, Jody Uslan had been taking the drug tamoxifen in hopes of preventing a recurrence of breast cancer. Then a new genetic test suggested that because of her genetic makeup, the drug wasn't doing her any good.

"I was devastated," she said. She stopped taking tamoxifen, and is now evaluating alternative treatments.

Experts say most drugs, whatever the disease, work for only about half the people who take them. For the others, their genetic makeup makes the drug ineffective, e.g., because the person may lack an enzyme to process the drug appropriately. The hope of "personalized medicine" is that doctors will be able to consider the likely effectiveness of a drug for a particular patient in light of that person’s relevant genes, in deciding which drug to prescribe.

Scientists are learning about a growing number of genetic markers that determine the likely effectiveness of particular drugs. Some genetic tests are available, many at a cost of several hundred dollars. The Food and Drug Administration has formally recommended genetic tests to guide the selection or use of some drugs, but has not yet made formal recommendations on many others.

Advice: To avoid the side effects, cost, and nuisance of using certain drugs unnecessarily, talk to a genetic counselor if you use Herceptin (trastuzumah), Erbitux (cetuximab), Vectibix (panitumumah), chemotherapy for breast cancer, Tamoxifen, Ziagen (abacavir), Camptosar (irinotecan), Tegretol (carbamazepine), Coumadin (warfarin), or Celebrex (celecoxib). Ask the counselor whether you should have a genetic test to determine the drug’s likely effectiveness for you.

Read another story about the value of genetic counseling.

Thanks to Andrew Pollack for the source article in today's New York Times.

Monday, December 29, 2008

TBI is what I'm supposed to be doing: A brain injury survivor

On March 11, 2002, a freak accident on an airport shuttle bus changed Peggi Robart's life in an instant. A piece of ceiling or sign – Peggi can't remember which – came loose, hitting her in the head and knocking her unconscious.

There was no gaping head wound, and no blood. But the next day, at work, it became apparent that she was not herself. She had been an educator, lecturer, and published author before the accident. But afterward she stuttered greatly simply in trying to finish a sentence. The familiar streets of Boston became confusing.

"I'd get in the shower and ask, 'What am I doing here?,'" she says. "You had to write everything down. I had to put the labels on all my cupboards. You go to the supermarket holding onto your list for dear life."

She started attending a support group run by the Brain Injury Association of Massachusetts, based in Westborough. Since then, she has become an activist. Many survivors report difficulties in finding providers who recognize and understand injuries like hers. So she has been reaching out to providers, by attending conferences and networking to let them know the full range of treatment options for people with traumatic brain injuries.

Peggi sees these efforts as instrumental in her healing. She says she is at peace with the fact that she will never be equal to her "before" self. Yet she has made significant improvement: she no longer stutters; she needs fewer PostIt notes to carry on her life, and it's easier for her to drive a car.

"Part of getting better is that I want to contribute, I like to help. Apparently, TBI is what I'm supposed to be doing."

Advice to people with severe injuries: Helping others with your condition might help you heal.

Read another story of a TBI survivor who is helping others.

Thanks to Megan McKee for the source article in yesterday's Boston Globe.

Sunday, December 28, 2008

Deemed to have the power of judgment: A difficult heart transplant decision

Hannah Jones, 13, is not afraid of dying — she is afraid of spending her remaining days in a hospital bed. In a case that raises a host of medical and ethical issues, the British teenager from a small town northwest of London has won a battle to refuse a heart transplant operation.

That decision by British medical authorities has ignited a debate over whether children should have the right to refuse potentially lifesaving medical treatments or if health authorities have an obligation to intervene.

Hannah, from Marden, 145 miles from London, was diagnosed with leukemia at age 4. Doctors later found a heart defect. In eight years, she has had chemotherapy and nearly a dozen operations.

"I've been in hospital too much — I've had too much trauma," she said.

Hannah's story surfaced when her parents complained about medical officials who threatened to force her into a hospital.

"They phoned us on a Friday evening and said that if we didn't take her in they'd come and take her. We still refused to take her," said her mother, Kirsty Jones.

A social worker was then sent to interview the teenager about her refusal to have a heart transplant to treat her cardiomyopathy, a serious disease where the heart muscle becomes swollen and sometimes fails. The social worker backed Hannah's decision.

Hospital officials said it is standard procedure to make sure both the child and the parents understand the consequences of any decision.

"Clearly the welfare of the child is paramount," said Dr. Sally Stucke, a pediatrician with the Herefordshire Primary Care Trust where Hannah was receiving treatment. "Pediatricians will always consider the child's best interests at all times and this would include the child's medical, emotional and psychological well-being."

"No one can be forced to have a heart transplant," she said.

In Britain, children younger than 16 aren't automatically considered legally competent to make decisions about their health care. Still, British courts have said that a child's decision can be valid if they have "sufficient understanding and intelligence to enable him or her to understand fully what is proposed."

According to the Department of Health, when a child is considered competent and refuses treatment, their decision will be respected. When a consensus can't be reached, the patient can be overruled by either parents or guardians, or in more unusual circumstances, by the courts.

Dr. Tony Calland, who chairs the British Medical Association's medical ethics committee, told BBC radio that a 13-year-old like Hannah, supported by her parents, should be "perfectly capable" of making such a decision.

"Decisions to refuse life-prolonging treatment are always extremely difficult and emotive," he said. "What is paramount is that decisions are made in the best interests of the patient."

Heart transplants are risky operations for any patient. Transplants often require patients to be on lifelong anti-rejection medication to prevent their body from attacking their new heart. The medicines sometimes have side-effects, which make the body more susceptible to dangerous infections.

"I just decided there were too many risks, and even if I took it there might be a bad outcome," Hannah said. "There is a chance that I may be OK, and there's a chance that I may not be as well as I could be, but I'm willing to take that chance."

In the United States, the issue of refusing treatment is generally decided on a case-by-case basis, said Dr. Jerrold Eichner, chair of the American Academy of Pediatrics committee on hospital care.

He said the ideal was when a child, their parents and their doctors agreed as to how to proceed. Disagreements can be handled by hospital ethics committees or, in extreme situations, by the courts — though Eichner said that was rare.

In Switzerland, anyone deemed to have the "power of judgment" can decide whether to receive treatment or not, and there is no formal minimum age. If parents contest their child's decision, then the minor can go before the state guardianship authority to ask for a ruling.

Michelle Salathe of the Swiss Academy of Medical Sciences said it was inconceivable that a doctor would force a child to undergo a heart transplant against the wishes of both the patient and the parents. In Austria, children under 14 are not allowed to refuse medical care, but 14- to 18-year-olds can. And under Greek law, parents have the final say on medical treatment until their child turns 18.

Advice to those advised to have major surgery: Look into it thoroughly, and make your decision with your family.

Read another story about a difficult surgical decision. Thanks to our source, Jennifer Quinn of the Associated Press.

Saturday, December 27, 2008

If that little girl in the picture can do it: Forgiveness after a severe wartime burn

Perhaps the most unforgettable Vietnam-era photograph shows a screaming, naked nine-year-old girl, afire and fleeing from a napalm attack. She is now a grown woman.

Kim Phuc's story of her long road to forgiveness:

On June 8, 1972, I ran out from Cao Dai temple in my village, Trang Bang, South Vietnam; I saw an airplane getting lower and then four bombs falling down. I saw fire everywhere around me. Then I saw the fire over my body, especially on my left arm. My clothes had been burned off by fire.

I was nine years old but I still remember my thoughts at that moment: I would be ugly and people would treat me in a different way. My picture was taken in that moment on Road No. 1 from Saigon to Phnom Penh. After a soldier gave me some drink and poured water over my body, I lost my consciousness.

Several days after, I realized that I was in the hospital, where I spent 14 months and had 17 operations.

It was a very difficult time for me when I went home from the hospital. Our house was destroyed; we lost everything and we just survived day by day.

Although I suffered from pain, itching and headaches all the time, the long hospital stay made me dream to become a doctor. But my studies were cut short by the local government. They wanted me as a symbol of the state. I could not go to school anymore.
The anger inside me was like a hatred as high as a mountain. I hated my life. I hated all people who were normal because I was not normal. I really wanted to die many times.

I spent my daytime in the library to read a lot of religious books to find a purpose for my life. One of the books that I read was the Holy Bible.

In Christmas 1982, I accepted Jesus Christ as my personal savior. It was an amazing turning point in my life. God helped me to learn to forgive — the most difficult of all lessons. It didn't happen in a day and it wasn't easy. But I finally got it.
Forgiveness made me free from hatred. I still have many scars on my body and severe pain most days but my heart is cleansed.

Napalm is very powerful but faith, forgiveness and love are much more powerful. We would not have war at all if everyone could learn how to live with true love, hope and forgiveness.

If that little girl in the picture can do it, ask yourself: Can you?

Kim Phuc has started a foundation, Kim Foundation International, which aids children who are war victims. She is a patient advocate hero.

Advice: Live like Kim Phuc.

Read a story about the ways faith and prayer help healing.

Thanks to Anne Penman of the Canadian Broadcasting Corporation for the source story, rebroadcast today on National Public Radio.

Friday, December 26, 2008

He was more concerned about my health: Elective breast surgery

Knowing that her mother had had breast cancer at 49, Kerry Herman of Brooklyn, New York had her first mammogram at 38, just before her first full-term pregnancy. She was told her breasts were cystic and very dense but otherwise healthy. When she stopped nursing her daughter, she had a second mammogram, at 41, and then annually after that.

She was in her early 50s when the mammograms started to show calcifications. By then sonograms were readily available to supplement her breast exams. At age 55 her mammograms revealed a different pattern of calcifications in her left breast. Though the radiologist and surgeon told her they did not think this was worrisome, a biopsy was recommended and done in three locations. It revealed very early cancer called ductal carcinoma in situ, or D.C.I.S.

Faced with removal of her left breast and biopsies of the right, she said in an interview, "I decided to be more proactive. After consulting my husband, who said he was more concerned about my health than my breasts, I had a bilateral mastectomy and reconstruction."

"I have never regretted my decision [about the elective surgery], she said. "For me, having to go through this every year and wondering if I would beat the Grim Reaper was agony."

A friend of hers with the same findings chose to wait and see, Kerry said. She ended up with an invasive cancer that had spread beyond the breast by the time of her next exam.

Advice to people with a friend at risk of breast cancer:
Help her consider all the options, and be supportive of her tough choice.

Read about another woman's very difficult decision on elective surgery

Thanks to Jane Brody for the source article in the New York Times of Oct. 21.

Wednesday, December 24, 2008

They regarded me as a rare pelt: Prostate cancer treatment

Dana Jennings's story:
I have prostate cancer, but it sometimes seems as if…the cold intent of many people was to translate me into an abstraction, to deny my damaged and tiresome flesh-and-bloodness.

My insurer did not want to hear that my radical open prostatectomy last July would demand a higher level of care because previous abdominal surgery had created a tortuous internal topography of scar tissue and adhesions. My insurer, despite the insight and strong protests of my doctors, kept insisting that any knife would do. Was Sweeney Todd available?

And some doctors I spoke with before my surgery – not my current team at the Cancer Institute of New Jersey – seemed to regard me as a rare pelt, a fascinating wrinkle in their volume business in prostates.

Cancer is a crucible in which we patients are somehow, we hope, reborn. It's a rite of passage as resonant as any other – a graduation, a baptism, a wedding – and should be treated that way. Some days, maybe because I'm still undergoing treatment, I don't want to hear about another stat, another study, another hare-brained cure. How about a smile, a kind word, and a hug?

The bewilderment, shame and fear often stun men into a passive and depressed silence. Nurses and doctors say that many men barely speak during treatment and office visits, letting their wives, partners or children do the talking. They are quiet waiting room wraiths, perfecting their thousand-yard stares. And if they speak, it's in murmurs, as if cancer required whispers. No one scratches you behind the ears and says "Good boy" for being mute.

Because I had surgery at a teaching hospital, I woke up each morning to the rustle and jostle of a gang of residents. Young crows with bright and clever eyes, they flapped into my room – almost like Keystone Kops in white coats – to take a poke at the old crow.

I don't want to be too tough on them, because they're only kids, and they have so much to learn in such a short time. But to most of them, I suspect, I was just a case, one of each morning's many medical exhibits.

I preferred the humane, morphine-woozy middle-of-the-night conversations with the aides who took care of me. The guy who talked about superhero movies after checking out the Iron Man figurine my sons had given me. And the guy who, as he gently drained my ileostomy pouch – not related to my cancer – told me how he'd had to wear a temporary pouch after he'd been shot when he was young and stupid.

Dana's Advice: To keep from being reduced to a cipher, a mere "case," you need to be conscious and verbal. As a patient, when you don't speak, when you try to take on the cool and detached manner of a doctor, all you become is "meat," quiet meat.

Read a story about compassionate doctors.

Thanks to Dana Jennings for his source article in the December 16 issue of the New York Times.

Sunday, December 21, 2008

He's now a normal little boy: Cord blood donation

Happy Chanukah to our Jewish friends – tonight is the first night of the holiday. Jews celebrate the miracle in which a small amount of oil burned for eight full days, long enough to illuminate their temple restoration work.

Today's blog post tells of the vastly disproportionate restorative effect of a small amount of a very different fluid – a modern miracle. And it even gives you a holiday gift suggestion; read on.

Jack’s story:

Jack was born a healthy little boy but at around six months old he developed a simple cold. During the day he appeared to have recovered from his cold but at night he couldn't seem to shake off a persistent cough. Jack was admitted to hospital where blood tests revealed he was suffering from Severe Combined Immunodeficiency (SCID). SCID is a rare, inherited disorder causing a severe abnormality of the immune system, making it difficult for the body to fight infections. It can be fatal if left untreated.

Upon diagnosis, Jack was transferred immediately to the intensive care unit at Great Ormond Street Hospital in London, where they began the search for a stem cell transplant – Jack's only chance of survival. A perfect match to Jack's tissue type was found with a cord blood donor and on November 7th 2003, Jack received his life-saving cord blood transplant.

Steve and Ruth, Jack’s parents, said, "Looking at Jack now, you'd never know he'd once been so ill. He's now a normal little boy who goes to playgroup and plays with his toys. The cord blood donor gave us the chance of life for Jack and we will be forever grateful."

Ken's advice for an inexpensive, meaningful and readily available last-minute holiday gift: If you're having a baby, donate his or her umbilical cord blood. If you're not, call the Red Cross at 1-800-GIVE-LIFE (1-800-448-3543) to schedule a blood donation by you and your family.

Read a story about a man who survived with the help of numerous blood transfusions.

Thanks to the British National Health Service Cord Blood Bank for the source story on their web site.

Saturday, December 20, 2008

The humble pinkie has earned my respect: Finger surgery & finger therapy

Dana Scarton's story:
Last April, I tripped while jogging and my 132-pound frame crashed onto the bone at the base of my right pinkie, a bone the width of a pencil. It snapped in the metacarpophalangeal, or MCP, joint, where the finger links with the hand.

Five months later, my finger would not bend unassisted. I could not make a fist, swing a tennis racket with control, or securely grasp a dumbbell or the handle of a vacuum cleaner. Because the injury occurred in my dominant hand, writing was cumbersome.

Repairs to a broken small finger can involve pins, srews, and plates. Eight days after my fall, two pins were inserted through the MCP joint during outpatient surgery, then a cast was applied from fingertips to elbow.

Twelve days later, the cast was removed and physical rehabilitation began. I had never heard of finger therapy, but it exists, and it's painful.

Treatments include heat, ultrasound, neuromuscular stimulation, splinting, and manual exercise.

I got therapy quickly but was assigned a therapist who was too timid to manipulate my finger. By the time I located a competent replacement, my finger was rigid, and scarring appeared to be well underway. My finger was stuck.

In October, I underwent flexor tenolysis, in which the surgeon meticulously freed the tendons. The day after the surgery, I started physical therapy. Earlier this month, I completed the treatment, and my finger now bends with ease and my hand strength has returned.

And the humble pinkie has earned my respect.

Dana's advice: It's of paramount importance to begin physical therapy promptly after surgery, if needed, to prevent scar tissue from proliferating and stiffening the joint.

Read a story about the value of good physical therapy.

Thanks to Dana Scarton for the source article in the Dec. 16 issue of the New York Times.

Monday, December 15, 2008

But I am living in a new world: Accepting multiple sclerosis

Ruth Just's story:
I have had multiple sclerosis (MS) for 35 years. I have lost one ability after the other. I am now completely dependent on the care of other people.

Over the years I have learned that although I can't choose not to have it, I can choose my attitude about living with the disease.

The first thing I must do is accept MS. I must accept it not just once but over and over again. Whenever anger, grief and envy rise in me – when I see what other people can do and what other people have – I must remember that I have decided to accept MS.

When my whole family goes to Germany and I have to stay home, I must remember my decision to accept MS. Every time I have to spend several months in bed healing a pressure wound and think what fun it would be to go on a bike ride with my sisters, I must remember my decision to accept MS.

I struggle and I groan under the weight of this responsibility. But I am living in a new world. New opportunities abound. And I'm amazed to find that I feel very thankful for this new world.

MS has created a special bond between my husband and me. He has stayed with me and offered me his love and support through all these years. Would I have seen the fine mettle of this man were it not for MS?

Many of the people who take care of me are new immigrants from African countries. Getting to know these people has been the most enriching experience of my life. They are part of my new world. We encourage each other, and our friendships are rich.

My diminishment has also made me a member of the MS community. The many fine people I have met inspire me with their courage. We share each others' joys and sorrows. I need these people and they need me.

Advice to people with such diminishments from a chronic illness: Read the book that has guided Ruth: On Hallowing One's Diminishments, by John Yungblut.

Read another multiple sclerosis story.

Thanks to Ruth Just for her source article in the November/December issue of Neurology Now.

Friday, December 12, 2008

Like a genie liberated from a bottle: A stroke of luck

Here is an excerpt from an interview of Jill Taylor by Mark Matousek:

In her best-selling memoir, My Stroke of Insight, Harvard-trained brain researcher Jill Bolte Taylor, age 49, tells of the rare form of stroke she suffered in 1996. It shut down the left hemisphere of her brain, where language, logic and linear thought are based. For months she was unable to walk, talk, read, write, or recall the events of her life. Remarkably, this shut-down, and the silencing of mental chatter, left her in a state of bliss. After eight grueling years of rehab, she regained full brain function, yet could still access, at will, what she describes as a state of complete peace and well-being.

Q. Can a person tap into this bliss without suffering a stroke?
A. Absolutely! When you're really paying attention to the richness of the present moment, that's right-minded awareness. The left hemisphere is preoccupied with past and future, projecting fears, contemplating ideas that aren't relevant to the here and now. Once you realize you have these two different brains, you can learn to choose, moment by moment, how you want to live. Of course, you do need the push as well as the pause to function properly.

Q. The "push as well as the pause"?
A. I use the tools of the left hemisphere to push into the world, but as soon as it becomes stressful, I can feel that in my body, and I switch to the right hemisphere to pause. I may prefer the pause because it feels better. I'm more joyful, cooperative. People like me better. As I recovered my skills, I consciously chose not to let that left-brain circuitry dominate again. Stress is a frame of mind. If I'm in traffic and there's no solution in sight, I relax and enjoy the few moments I have. Standing in line at the store, I observe rather than engage. You can say, 'If I pull the plug on this circuit, I don't have to think [stressful] thoughts anymore.'

I feel like a genie liberated from a bottle.

Indeed, the long-haired blond medical school professor looks the part of a genie….

Advice: Prof. Taylor has used her disease to cultivate a higher form of consciousness. She teaches others about this in her courses, and by writing a book. That makes her a patient safety hero. Learn from her example.

Read another stroke survivor’s story.

Thanks to Mark Matousek for the source story in the November/December 2008 issue of AARP magazine.

Thursday, December 11, 2008

If David could speak from his grave: Regulations on drug companies' gifts to doctors

David Olson's story appeared here more than a year ago.

Officials in the Massachusetts Department of Public Health are now writing regulations about the disclosure of gifts that doctors get, e.g., from drug companies, according to an article by Liz Kowalczyk in the Boston Globe of Dec. 6.

If David could speak from his grave, he might want his voice heard loud and clear on this. A drug company was paying David's psychiatrist thousands of dollars for participating in a drug study. After David's death, the state medical board criticized the doctor, concluding that he had "failed to appreciate the risks of taking Patient 46 off Clozaril, failed to respond appropriately to the patient's rapid deterioration and virtually ignored the patient's suicidality." It's hard to avoid concluding that the payment of thousands of dollars for recruiting each of a number of patients into the drug trial had affected the doctor's judgment.

Worse, this was no "bad apple." The doctor was the president of the Minnesota's psychiatric society.

Officials in Massachusetts are now considering whether doctors must disclose payments for research and research-related activities. Note that, whatever they decide, doctors will be free to receive these payments. The issue at stake is only whether patients will be able to find out about it.

Advice: Work to ensure that doctors disclose the sources of their money.

Read a story about a different conflict of interest by a doctor.

Wednesday, December 10, 2008

She was pregnant when her insurance ran out: The 60th Anniversary of the United Nations' Universal Declaration of Human Rights

Her father had worked in the Archway cookie factory in northern Ohio for 24 years. Starla Darling, a 27-year-old mother of a young boy, had worked there for eight years. Archway provided excellent health benefits for her through Blue Cross Blue Shield. Starla became pregnant again. Several months later, on Oct. 3, she and the other factory employees received a letter from the owners of the company – an equity firm in Greenwich, Connecticut: the factory would close; their jobs were being eliminated; and insurance benefits would expire on Oct. 6.

"When I heard that I was losing my insurance," Starla said, "I was scared. I remember that the bill for my son [Colt]'s delivery in 2005 was about $9,000, and I knew I would never be able to pay that by myself." So she asked her midwife to induce her labor two days before the insurance expired. "I was determined that we were getting this baby [Kathryn] out, and it was going to be paid for." Starla rushed to the hospital, took a medication to induce labor and then had an emergency Caesarean section.

The insurer denied her claim, leaving her with more than $17,000 in medical bills.

Many people in Starla's situation can maintain their health benefits through a provision in COBRA (the Consolidated Omnibus Budget Reconciliation Act of 1986). Unfortunately, because the Archway employees' group health plan no longer exists, that is not an available option for her. In effect, the COBRA section of the safety net has a hole that the 275 factory workers fell through.

Starla's story is especially poignant because today is the anniversary of the UN's Universal Declaration of Human Rights, which draws from the US Constitution, and particularly from the Bill of Rights. Article 25 states:

"Everyone has the right to a standard of living adequate for the health and well-being of himself and of his family, including food, clothing, housing and medical care and necessary social services, and the right to security in the event of unemployment, sickness, disability, widowhood, old age or other lack of livelihood in circumstances beyond his control. Motherhood and childhood are entitled to special care and assistance."

Advice to citizens: Fight to get access to affordable care – a universal human right - for people like Starla, Colt, and Kathryn.

Read another story of unaffordable care.

Thanks to Robert Pear for the source story in the Dec. 7 issue of the New York Times.

Tuesday, December 9, 2008

George Morrison: A fatal patient fall

George Morrison died on Nov. 17 from a fall in the hospital at age 89. He had been the US Navy commander of the fleet during the Tonkin Gulf incident that led to the escalation of the Vietnam War. He is the father of the late Jim Morrison, the lead singer of the Doors.

Advice to people with an elderly family member in the hospital: Ask the nurse if your family member is at risk of falling, and what can be done to prevent a fall in the hospital. Hospitals often have protocols to reduce the chance of a fall for at-risk patients. The drugs that many elderly people take sometimes have dizziness as a side-effect.

Read a story of successful fall prevention.

Thanks to William Grimes for the source story in today's New York Times.

Sunday, December 7, 2008

For the long and painful process of being angels: Gratitude for family caregivers

As a 75-year-old mother living alone in Boca Raton, Florida, and with my son, a computer research scientist, living in Olympia, Washington, I found it eye-opening to read "More Men Take the Lead Role in Caring for Elderly Parents" [in the New York Times].

Although I am physically fit with no major medical problems, the time will come when I need help.

But men caring for their elderly parents does not necessarily begin when debilitation sets in. My son has been my sole financial caregiver, when I have needed it, for more than 15 years, and if and when I have physical needs, I would guess he'd be there for me then also.

But it was only after reading Peter Nicholson’s perspective in the article that I realized what my son may go through: "As a teacher, he could measure his contribution by the students' progress. But with his mother, he can only watch her decline." And, "there is the lingering sense that whatever they do is not enough."

Perhaps mothers and fathers, before they grow into senility, should write a letter to their prospective caregiver, son or daughter, expressing gratitude for whatever decisions and actions they may, or may not, in the future, take in their long and painful process of being angels.

A thank-you letter in advance might ease the torment of one's beloved offspring.

-Malka Kornblatt

Read a story about tough love by a family caregiver.

Thanks to Malka for the source, the letter she wrote to the New York Times editor, published today.

Tuesday, December 2, 2008

The calming presence in the middle of a storm: A breast cancer patient navigator

Chris Ross is a 52 year old tutor from St. Andrews, New Brunswick, Canada who found a lump in her breast; she then had a biopsy that confirmed cancer. "I remember my first meeting with Wendy [Cyr]," says Ross. "My family physician had referred me to the breast clinic at St. Joseph's Hospital and I met with Wendy and my surgeon. There was a lot of information to take in, but Wendy had prepared a complete package explaining everything I was about to go through. I knew immediately that she was going to help me get through things; that she would be a terrific support. She has a way about her, and I just knew."

"Wendy has literally been there for me every single time I've reached out to her," says Chris. "And there was a lot of reaching out! Wendy really personalizes her approach. She helped lessen my worries and understand what to expect. I think she has a tough job – but she just knows how to interact with people, how to reach people."

Wendy can connect newly diagnosed breast cancer patients with a variety of people and resources they might need. "Dealing with a breast cancer diagnosis is complex,” she explains. "Every patient is different; some need financial assistance, some need couples counselling, others have transportation issues or need prosthetics or wigs. There are so many things, outside of their treatment, that can present as they navigate through treatment and recovery. I try to act as a consistent presence. I want our patients to know that if they call me, I will be there to assist them in whatever way I can, and I will arrange contact with the appropriate people."

Chris has completed her treatments and is cancer-free, but she is still in regular contact with Wendy. "I just love knowing that she’s there. Not a day goes by when I don't wake up and think about cancer. But Wendy keeps a close eye on me; if I call her she's right there for me to do whatever she can."

Advice to women with breast cancer: Find a navigator like Wendy.

Read another patient navigator story.

Thanks to Erin Barnes of Atlantic Health Sciences Corporation for the source story in the December issue of Hospital News.

Monday, December 1, 2008

His nine patients already were seated: Shared medical appointments

When Dr. Eugene Lindsay arrived to see his 4:30 appointment on a recent Thursday, his nine patients already were seated on folding chairs arranged in a semicircle around a table of snacks. For the next 90 minutes, he examined them, one by one, discussing their personal medical details out loud.

Dr. Lindsay, a cardiologist and CEO of Harvard Vanguard Medical Associates, now sees patients only in such groups, called "shared medical appointments."

"It was fabulous," said Nicholas Poly, an 80-year-old retired engineer. "I have problems similar to what other people have. I get to hear their questions too, and that's good."

Walter Kelly, on the other hand, attended two group visits, and then said he would rather see Dr. Lindsay individually if that were an option. Walter, age 89, had begun seeing Dr. Lindsay five years ago, after he got a pacemaker for his heart murmur.

The groups attempt to increase the satisfaction of patients and doctors by allowing more time in the visit, at the expense of privacy and modesty.

For the group appointment to work, additional staff and privacy and confidentiality policies are needed. A medical assistant takes vital signs and gives immunizations privately, in a nearby room. A nurse wrote patients' questions on a white board in the conference room used for the visit. Patients can talk to the doctor privately if they have questions they don't want discussed publicly, e.g., about sexual problems.

My hunch is that, as in group therapy in the behavioral health world, much of the clinical success of a group depends on the similarity of patients in the group.

Advice to people with delayed individual medical appointments: Ask your doctor about shared medical appointments.

Read a very different group visit story.

Thanks to Liz Kowalczyk for the source story in yesterday's Boston Globe.