It’s just the crumb of a muffin but Martha Galvis must pick it up. Lips clenched, eyes narrowed, she goes after the morsel, pushing it back and forth, then in circles, across a slick table top.

“I struggle and struggle until,” Galvis pauses, concentrating all her attention on the thumb and middle finger of her left hand. She can’t get them to close. “I try as much as I can. And if I do it I’m so happy, so happy,” she says, giggling.

Galvis, 62, has just finished a session of physical therapy at Brigham and Women’s Faulkner Hospital where she goes twice a week. She’s learning to use a hand doctors are still reconstructing. It’s been two years since she almost lost it.

On April 15th, 2013 Martha and her husband Alvaro Galvis headed for three spots from which they’d enjoy the race and boisterous crowd. Their last stop would be at or near the finish line.

Watching the marathon was a ritual that began in the mid 1970s when the Galvises, who are both from Columbia, met in Boston. Their three children grew up with the marathon as family holiday. The Galvises planned to continue the annual event after retirement.

“But not anymore,” says Martha Galvis, waving both hands in front of her face. “I don’t feel secure to do this.”

The former preschool teacher tries not to think about the moment when a pressure cooker bomb placed on the ground exploded, hurling nails and BBs into her left leg and hand. It was just at that moment that Galvis reached down for her bag at her feet.

“My hand was destroyed, destroyed, it was so bad,” she says.

Dr. George Dyer, with Brigham and Women’s Hospital, began rebuilding Galvis’s hand about 30 minutes after the bombs went off. Dyer decided he would try to save everything except Galvis’s ring finger.

“She had a very beautiful wedding ring that was two fine bands kind of wrapped around each other,” Dyer says. “The force of a bomb going off right next to your hand, it’s kind of like a miniature hurricane. It unwrapped these fine gold bands and then wrapped them together very tightly around her finger and just cut it off in place.”

Dyer picked pieces of the wedding ring out of bone and tissue and saved them for Galvis. He salvaged parts of the ring finger to replace joints and tissue missing from its companions. In surgery number 16, Dyer took bone from Galvis’s hip, where the marrow has the best potential to stimulate healing, and grafted it to a joint in her pinky. Doctor and patient are waiting to see if she’ll need further operations. Galvis calls Dyer a magician.

There were just a few serious hand injuries because the deadly spray went sideways, not up. Martha Galvis also severed nerves in her left leg. Two years of surgery and rehab, Galvis feels worn down.

“Then I’m thinking about when I was going to the marathon and I was cheering the people and I say, come on, keep going, keep going, one more mile,” Galvis says. “So I look my hand and I say come, come on, keep going, you can do it, this is like a marathon. And I can feel people in Boston say yes you can do it, come on keep going, keep going.”

The jeweler in Boston who made Galvis’s original wedding ring took the shattered, twisted pieces and molded a new band. But Martha Galvis, who is devoted to her husband, says that for a long time, she was afraid to put it on.

“It’s silly maybe,” Galvis says with a sheepish shrug, but she says she couldn’t shake the worry that, “something might happen and I could lose my hand again, the other hand.”

For some marathon bombing survivors, the emotional and psychological scars are healing more slowly than the physical ones. Martha Galvis pauses and reaches over to stroke the back of her husband.

“People tell me time heals, but it’s a very slowly turning clock to me,” says Alvaro Galvis. He is a health insurance salesman. He had two surgeries to repair his leg. He says a 1 inch by 2 ½ inch piece of pressure cooker removed from his right leg was introduced as evidence in the trial of now convicted bomber Dzhokhar Tsarnaev.

“I don’t know if we are wired as human beings to be able to deal with tragedies like this. I don’t know if we will ever be able to. We’re trying, we keep trying,” he says.

Alvaro Galvis struggles with flashbacks, he’s jittery and anxious. He says he can’t get used to the feeling that he has no control over his surroundings.

“You think about a lot of things you know, in two years of trying to understand,” says Galvis. “That’s part of the healing.”

Neither Alvaro or Martha Galvis has been able to return to work since the bombing and they aren’t sure if they ever will. They say they were getting better, before the trial. But with the verdict last week, the race anniversary this week and sentencing next week, they are constantly on edge. So Martha Galvis prays.

“I ask God, please,” Galvis begins, “in my heart, I don’t want to hate him. I don’t want to hate him because its no good for me to feel I hate him. And I ask God for him. But he has to be punished because he did horrible things and he has to be punished.”

Martha and Alvaro Galvis stop the interview. This is too much for them. They leave the hospital arm in arm, supporting and protecting each other as they enter a world they’ve learned they can not control.

This story is part of a partnership that includes WBUR, NPR and Kaiser Health News.

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation.

Dr. Robert Wachter is a long-time patient safety advocate who has written extensively about the trends affecting quality and safety in health care. Wachter, associate chair of the University of California-San Francisco department of medicine, years ago coined the term “hospitalist” and predicted the rise of that profession.

In his new book, “The Digital Doctor: Hope, Hype and Harm at the Dawn of Medicine’s Computer Age,” he turns his attention to technology in health care, and the risks and rewards as we digitize everything from medical records to office visits. We talked recently about his new book. This is an edited and condensed version of that conversation.

Q. As I read your book I couldn’t help thinking about the elderly. Many older people aren’t tech savvy. They’re intimidated by looking up information on computers, sending email to their doctors and the like. They’re also bigger health care users than many younger people. What needs to be done to help them get and stay engaged as technology advances?

A. It’s an important question. It’s not natural for them the way it is for the next generation and beyond. But most older people are at least using email and know how to surf the Web. Silicon Valley has woken up and realized this is a huge market. As consumer-oriented tech companies enter the health care field, I think they’re going to design tools and technology and ways of interfacing that make it seamless for the people who need to become engaged. This will allow older patients to at least do the basic stuff, like renewing their medications, the stuff that’s just incredibly annoying in the paper world.

Q. In your book, you talk about moving away from fee-for-service payments to doctors and hospitals and toward payments based on a population of people, adjusted for their baseline health. From a patient perspective, will that change how they pay for their care? At the most basic level, could that finally mean the end of incomprehensible “explanation of benefits” insurance forms, for example?  

A. I wish I were more hopeful. Of all the nuts we have to crack, this is the one I’m least optimistic about.

If everybody is in an accountable care organization or the like, providers get a single payment when they treat someone. But as long as they’re still doing an adjustment for the relative sickness of the patients, the organization will need to account for all of the details. And I’m afraid the patient may also still see a confusing itemized bill, unless we can get to a point in which you’ve paid for the year and you’re done.

The movement away from piecemeal payments is hopeful, and so are the digitization of health care and the entry of Silicon Valley companies with a consumer sensibility. I guess the question is: Do all of those trends — when woven together — lead to something that’s more user friendly? When it comes to clinical care, I think the answer is yes. I see how we can get to a much happier place, with better care through digital medicine, in five to seven years. But the idea that you could get a simple, clear insurance bill that you pay with one click… that still feels like a moon shot to me. So maybe in 10 to 15 years.

Q. To what extent can technology really help people comparison shop for health care? To date, we’ve seen that it seems to work best for procedures like colonoscopies or MRIs, where the service performed is fairly comparable and relatively inexpensive. Could people really comparison shop for cancer treatment? Would we want them to?

A. Sure, why not? Some of this comes down to your fundamental belief in capitalism and the market. But we do have to pay some attention to fundamental differences between health care and other markets. For example, in health care, we can’t accept haves and have nots, while we readily accept this with other luxury goods. That said, I’m pretty convinced that if you create an environment where patients have the information they need to make those decisions, that the market will help them make good choices.

The area I worry about is the science. How do we really know that one doctor or hospital is better than another? Most aspects of quality measurement are not very advanced.

Another real challenge is fragmentation. If I get my colonoscopy at one place because it’s the best and cheapest but it’s in a different system than the one my primary care doctor is in, that’s a problem if the electronic records don’t talk to each other. As a patient, I’ve got to think about the advantage of receiving the cheapest procedure compared to the negative consequences of no one doctor having a complete view of my health.

Q. I want to touch on the Affordable Care Act. Do you think the health law requirement that people have health insurance positively affects their engagement in their own health care or the health care system?

A. I think everybody should have health insurance. The system works better and people have better health and health care with universal insurance. And the law was the most politically feasible way to make that happen, so I support it. When people have health insurance, it creates a connection to a system that is largely mediated through a primary care doctor. To have 40 to 50 million people floating outside the system – able to access the system only episodically and when they’re very ill – is crazy.

Has having insurance increased their engagement? Yes, but at a level that’s pretty wimpy. Now you can see a primary care doctor to manage your blood pressure in an office visit every six months, but is that the level of engagement we should aspire to? Nowhere near it. The hope is that by having everybody part of an organized health care system, now it’s in the interest of the system to have engaged patients – since that engagement should lead to fewer office visits, ER visits, and hospitalizations. But this is the sort of thing that takes years, if not decades, to develop.

Q. What about initiatives like OpenNotes that allow patients to read their doctors’ electronic notes about their care? How do they change the patient-doctor relationship?

A. OpenNotes illustrates the democratization of the health care system, which is going to challenge all of the system’s fundamental underpinnings. Digitization is an enabler. It’s changing the relationship between doctors and their patients from an extraordinarily paternalistic one to one that is more democratic. In the new world, a patient’s choice is no longer just, “Do I see doctor A or B?” but “Do I even need to see a doctor at all?” OpenNotes is part of this trend.

As wonderful as patient sharing access to their information is, along with new tools to self-manage and things like telemedicine that allow patients to receive care outside the traditional system, in a world of high copays you are going to see some patients making some very bad choices. In the old days, the sick patient had to go see a doctor. Now they can go to MinuteClinic. Or they can Google their symptoms. I wouldn’t want to turn back the clock, but it raises the question, “When is self-management a bad choice?”

As health care finally goes digital, some people believe that it’s no different than travel or banking. But no one is getting harmed by using TripAdvisor or Fidelity. I think you could argue that health care is fundamentally different.

Please contact Kaiser Health News to send comments or ideas for future topics for the Insuring Your Health column.

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation.

HHS announces $1 million in new grant programs to help improve sharing of health information

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