patient choice

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‘Medically Unnecessary, But A Choice:’ Tripling Of Women Who Have Healthy Breast Removed

Dr. Mehra Golshan performs a bilateral mastectomy (Courtesy Dana-Farber/Brigham and Women's Cancer Center)

Dr. Mehra Golshan performs a bilateral mastectomy (Courtesy Dana-Farber/Brigham and Women’s Cancer Center)

As Ellen Collins lay on the operating table, her mind beginning to fog over from the anesthesia, the surgeon who was about to perform her double mastectomy offered encouraging words: “I will meet you at the top of Vail Mountain.”

Three years later, when Collins marked the joyous milestone of surviving her aggressive breast cancer beyond the worst danger zone, the surgeon kept his word. Dr. Mehra Golshan and his family did indeed meet her at the top of the mountain to celebrate — and ski down.

That was back in 2013, and Collins remains grateful to this day. She has not a single regret about her double mastectomy and the reconstruction that followed.

Surgeon Mehra Golshan and patient Ellen Collins mark her breast cancer three-year survival milestone on Vail Mountain in 2013. (Courtesy)

Surgeon Mehra Golshan and patient Ellen Collins mark her breast cancer three-year survival milestone on Vail Mountain in 2013. (Courtesy)

“The peace of mind and the quality of life — I feel whole again, I feel complete,” she said. “I can look in the mirror and not feel deformed. I feel proud of myself and I feel healthy — it’s priceless.”

And Dr. Golshan, who is distinguished chair in surgical oncology at Brigham and Women’s Hospital, remains supportive of her choice. But he is also concerned about the trend she represents.

The number of women who have cancer in just one breast but choose to have both breasts surgically removed is rising ever more dramatically. From 2002 to 2012, the rate tripled, according to newly published research that Golshan oversaw.

Among the nearly half a million American women diagnosed with early invasive breast cancer during that time, double mastectomies rose from about 4 percent of patients to over 12 percent. And those numbers pre-date the boost from Angelina Jolie’s 2013 announcement of her own surgery.

Here’s the crux of the problem: For 90 percent of those women, those who lacked a clear genetic risk, the data show that double mastectomies did not improve their long-term odds of survival. That lack of survival benefit has been clear for years, but they underwent the major operation anyway.

“The number one concern for my patients is survival,” Golshan said. “And if I can’t say that removing the opposite breast is going to achieve that, well, is that something a woman should go through? And it’s a very difficult and a very personal decision, but our research is basically showing that if anything, it’s increasing, and not slowing down.”

‘I Don’t Want This Coming Back’

Why would more and more women be choosing an operation that involves a long recovery and carries risks that include recurrent infections, chronic pain and the need for more surgery?

Golshan’s own study offers a major clue: Far more women who have mastectomies are also undergoing breast reconstruction. The rate has risen from 35 percent in 2002 to 55 percent in 2012. Reconstruction itself has been improving significantly, he said.

So for a patient like Ellen Collins, a double mastectomy combined with reconstruction offers a double appeal.

The mastectomy left her feeling like she had done everything she could to reduce the risk of a recurrence, she said. Her children were in kindergarten and second grade when she was diagnosed at age 41.

“In a cancer situation, so much is out of your control,” she said, “but this was one piece that I could say with conviction that I want to do for me, and the main point is, I don’t want this coming back.”

Ellen Collins with her family -- husband Kevin, children Kaitlyn and Jack – in 2013. (Courtesy)

Ellen Collins with her family — husband Kevin, children Jack and Kaitlyn – in 2013. (Courtesy)

The reconstruction also gave her breast “parity” — so now, in a sales job in which appearance is important, “I feel confidence in anything I wear. I was able to get my life back.”

Also a possible factor: Rising public attention to breast cancer, including celebrities like Jolie who are open about their operations and model good outcomes.

Yet another possible factor: The findings on the lack of a survival benefit don’t make intuitive sense. If your diagnosis shows you’re prone to breast cancer, it seems obvious that removing a breast should lower risk.

But the risk of cancer in the opposite breast is extremely low, Golshan explained, and if cancer does develop there, it will likely be caught early. The greatest danger is cancer coming back elsewhere, in a woman’s lungs or bones or brain, he said.

And then there’s insurance: American health insurance generally covers “contralateral prophylactic mastectomy and reconstruction” — removing the healthy breast and doing a double reconstruction — even though the costs may amount to tens of thousands of dollars more than less involved options.

‘It’s Medically Unnecessary, But It’s A Choice’

So with all the factors in favor of preventive mastectomies, why all the concern from Golshan and other cancer specialists? Continue reading

Mass. Launches A Grand Experiment: Pricing Health Care

There’s a grand experiment underway in Massachusetts and we are all, in theory, part of it.

Here’s the question: Can we actually list prices for childbirth, MRIs, stress tests and other medical procedures, and will patients, armed with health care prices, begin to shop around for where (and when) they “buy” care?

One of the first steps in this experiment is a new requirement that hospitals and doctors tell patients who ask how much things cost. It took effect Jan. 1 as part of the state’s health care cost control law and we set out to run a test.

Our sample shopper is Caroline Collins, a 32-year-old pregnant real estate agent from Fitchburg who is trying to find out the price of a vaginal delivery. Her first call is to the main number at Health Alliance Hospital in Leominster. From there, she is transferred to the hospital’s obstetrics department. A receptionist there tells Collins to call the billing office at UMass Memorial Medical Center in Worcester, Continue reading

Special Report: ‘Menu’ Lets Patients Choose End-Of-Life Treatments

Horror stories about end-of-life care abound. Here’s mine. After a terrible car accident at age 56, my beloved mother lay in a vegetative state for nearly two years. She’d always been very outspoken about choosing death over life as a vegetable, so when all hope for any sort of recovery was gone, we brought her home to die.

It is illegal to kill. We couldn’t just give her an overdose. But we could “withhold care,” so we stopped her tube feedings to let her effectively starve to death. She lay in a hospital bed at home for nine days, slowly fading. Even knowing her wishes, and with support from the most saintly and sensitive hospice workers, it was a nightmare.

At one point, a hospice doctor told us that if my mother showed any signs of discomfort, her morphine dose could be increased. I remember snapping at him something like: “Why in the world would we wait for her to show ‘signs of discomfort’? Crank the morphine all the way up now! Why let there be even a chance of pain? The point here is for her to die, and if the morphine depresses her breathing and hastens that along, so much the better!”

It would have been good to be able to register a request for “absolutely maximal pain relief.” But there was no mechanism for that. There was no formal way to lay out our end-of-life instructions.

That is very likely to change soon. The coming thing for patients near the end of life in Massachusetts is a new official form that lets them discuss and document their choices for “life-sustaining treatments” — based on their own needs, their own preferences and what is medically appropriate. I think of it as “the final menu.”

Far more specific than a “Do Not Resuscitate” order, it asks: Would you want to be intubated? Put on a ventilator? How about dialysis? Do you want to be brought to the hospital, or remain at home? How about tube feedings? Anything else? (Personally, I think I’d write: “Please drug me up so intensively that I float into death in a happy morphine haze.” Doctors might not be able to comply, but I’d still ask. )

The form is not for everyone — unlike the health-care proxy form that everyone over 18 should fill out to designate a backup medical decision-maker. But if you have a chronic, advancing illness with no hope of recovery, you can choose to talk about your options with your clinician. Then together, and perhaps with your family as well, you convert that conversation into checks in boxes on the shocking pink form, called a MOLST, Medical Orders for LIfe-Sustaining Treatment.

The MOLST becomes a valid medical order, to be honored by all who treat you, whether the ambulance crew or nursing home staff or hospital physician. If you change your mind, you can always change your MOLST.

I call the MOLST the coming thing for two reasons: One, it’s not here yet. The form is available only in a small pilot project that has been running for just six months in Worcester, training hundreds of doctors, nurses and social workers to use the forms. The project’s managers are still evaluating it, and if it gets approval for use statewide, they want to roll it out carefully, possibly as soon as next year.

But two, those managers are already fielding frequent requests for the form, suggesting how popular it may become. The MOLST eliminates guess-work about a patient’s wishes, both for medical personnel and for families. And it is simply, appealingly explained in this 13-minute video.

MOLST in Massachusetts from Commonwealth Medicine on Vimeo.

“A lot of people hear about it, they see it, they want it,” said Andy Epstein, who co-chairs the MOLST steering committee as special assistant to the state public health commissioner. It involves “a process of discussing and communicating and ultimately honoring the patient’s wishes. and it’s very comprehensive — that’s the beauty of it.”
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