But that exam last summer wasn’t like any other she’d had in her 16-year, basically healthy life. Within minutes of learning the results from a urine test, she got two corroborating blood tests and was hustled off to Inova Fairfax Hospital. Lying on a gurney in the emergency room, she heard the word “diabetes” several times and knew from the urgent medical reaction that it was bad. Frightened and crying, she thought: “What have I done to myself?”

See Related Video: Learning To Cope With Type 2 Diabetes

Doctors had discovered that Annie had Type 2 diabetes, a disease that is often linked to being overweight. She never made it to summer camp. By the time she came home from the hospital a week later, she knew how to inject herself with insulin and she knew that she’d have diabetes for the rest of her life.

As recently as the mid-1990s, Type 2 diabetes was almost exclusively a disease of adults. But apparently fueled by the childhood obesity epidemic, cases in people younger than 20 have ramped up from virtually zero to tens of thousands in the United States in little more than a decade. The children who have it are breaking scientific ground: No one has any idea how they will fare over the course of a lifetime.

Annie says she was “most definitely overweight” at the time of her diagnosis, and she has already made major lifestyle changes to control the disease. By exercising and cutting back on carbohydrates, she has lost 12 pounds so far. She has reduced her need for insulin from several injections a day to just one each night, and she’s hoping that soon she’ll be able to put the needle aside and just use an oral medication, metformin.

Snyder

Although she is the only person in her household with diabetes, Annie’s diagnosis triggered a family response. Her parents got rid of the dining room table and turned that space into an exercise room, complete with a bowl of apples and artfully arranged bottles of water at the door. Everyone exercises, including her 15-year-old brother Stephen; everyone has given up sodas and snacks, everyone eats smaller portions.

“When I see my dad exercise, I know that I’ve helped get him motivated,” Annie says. “Before, exercise was a chore. I would sit and watch TV and eat snacks. Now, as soon as I come home, I put on my workout clothes.”

A Disturbing Trend

Today, about under the age of 20 receive a diagnosis annually of what used to be called “adult-onset” diabetes, according to the Centers for Disease Control and Prevention. That relatively small number makes it a rare disease in children, but it represents a trend with larger ramifications.

“In a little more than 10 years, the numbers went from nothing to something,” says Larry Deeb, a pediatric endocrinologist and past president of the medicine and science division of the American Diabetes Association. “And that’s something to worry about.”

The Two Forms Of Diabetes

Diabetes treatment is a hormonal balancing act, whether it’s type 1 or type 2. Type 1 was formerly called juvenile diabetes, and type 2, until recently, was referred to as adult-onset diabetes. Those terms have been discarded since about the mid-1990s when pediatricians for the first time began reporting cases of

Type 1 is an autoimmune disease in which the immune system destroys pancreatic cells that make insulin, the hormone needed to regulate glucose, or sugar, in the blood. It’s commonly diagnosed in childhood, and the majority of children who have diabetes have type 1. People with type 1 diabetes need insulin injections to live. Good diet and exercise also help them control their disease, but lifestyle had nothing to do with causing it. Some very thin people, Mary Tyler Moore for one, have type 1 diabetes.

With type 2 diabetes, the pancreas makes insulin, but the body develops a resistance to insulin and no longer uses it properly to regulate glucose, or fails to make enough to keep up with blood sugars. Where an individual’s body stores fat, and the kind of fat stored, are likely factors that influence who gets type 2 diabetes and who escapes it, but the links between weight and diabetes need more research. In any case, the blood becomes overloaded with sugars. Some people with type 2 diabetes need insulin injections, but many can control their disease with oral medications, a good diet and exercise.

Diabetes can cause a litany of medical woes, including heart disease, kidney failure, limb amputations and blindness. It costs the U.S. health-care system $174 billion a year, according to the National Institutes of Health.

Those statistics are grim enough when patients are in their 60s. When the diagnosis is made decades earlier, new fears are raised: Will these children suffer heart attacks in their 20s, need kidney dialysis in their 30s or go blind before they see their own children graduate from high school?

Because about 80 percent of Type 2 diabetes patients are , it’s not surprising that patients such as Annie ask if they’ve done this to themselves. But there are other risk factors that no one can control: family history, ethnicity (blacks, Hispanics and American Indians have higher rates of diabetes), genetics or a mother who had diabetes during her pregnancy.

Instead of wallowing in regret, doctors suggest that young patients and their parents seize the opportunity for a crash course on how to improve their health.

“I used to wear a button that said ‘Stamp Out Guilt,’ ” says Fran Cogen, director of the Child/Adolescent Diabetes Program at Children’s National Medical Center in Washington, D.C. “I try to tell people that no one caused their diabetes. I emphasize that they can make changes now.”

Alarm bells are going off among those who study diabetes in children because of what they know about the adult version of the illness. More than 25 million Americans have diabetes (more than 90 percent have Type 2), according to the National Institute of Diabetes and Digestive and Kidney Diseases — but another 79 million have a condition called pre-diabetes, in which blood sugar levels are higher than normal but not as high as in diabetes.

Pre-diabetes isn’t a disease requiring medical treatment — it’s a wake-up call. A large national showed that adults with pre-diabetes who lost 7 percent of their body weight reduced their risk of diabetes by 58 percent.

Officials are concerned that the number of children already identified as having Type 2 diabetes is just the tip of the iceberg. In a national of 2,000 eighth-grade students from communities at high risk for diabetes, more than half of the kids were overweight or obese. Only 1 percent had diabetes – but almost a third of them had pre-diabetes, according to Lori Laffel, chief of the Pediatric, Adolescent and Young Adult Section of the Joslin Diabetes Center in Boston and a principal investigator on the study.

It’s crucial, she says, to find those children before their condition progresses to diabetes so that it can be reversed by lifestyle changes, without medication.

Making Progress

If there is any good news in childhood diabetes, it is that pediatricians are starting to look for it.

“It’s in the news, and all over the medical literature,” says Susan Conrad, a pediatric endocrinologist at Inova Fairfax Hospital. “Pediatricians are on top of it.”

Perrone

For example, sometimes children whose bodies are beginning to have problems regulating insulin develop a telltale dark, velvety rash around their necks. A decade ago, such a child might have been referred to a dermatologist.

In addition, CDC guidelines suggest that a child with a family history of diabetes, or one whose weight is above the 85th percentile for age and sex should be screened, with blood and urine tests, for diabetes.

Family experiences made John Perrone of Winchester, Va., aware of diabetes and its consequences. John’s mother, who developed gestational diabetes during all three of her pregnancies, now has Type 2 diabetes. His mother’s aunt had diabetes, and by the time she died in her 70s, she was on dialysis, in a wheelchair, legally blind and had suffered two strokes.

John got a diagnosis of Type 2 diabetes four years ago, and he has worked hard ever since to keep the disease under control. He says he’s gone from an overweight 11-year-old to a husky but fit 15-year-old. He has progressed from needing insulin injections to keeping his glucose under control with oral medication, combined with healthful eating and a lot of exercise.

He has learned enough to want to teach other kids with the disease. As an Eagle Scout project, he has developed a PowerPoint presentation aimed at youngsters. He has translated medical terms, such as glucose and glucometer, into words they understand, such as sugar and meter. He has also wanted to simplify for kids the basics of weight loss, which is so crucial for diabetes control.

“It’s all about in and out, what you eat, how much you exercise,” he says. “Maybe if kids understand it better, they can do it.”

ºÚÁϳԹÏÍø News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about .

USE OUR CONTENT

This story can be republished for free (details).

What would Bunny want them to do? Phil Olenick, 59, and his brother Steve, 57, knew that modern American medicine can offer few compassionate exits from this life. Artificial measures in the intensive care unit at Brigham and Women’s Hospital in Boston – things like ventilator-assisted breathing or feeding tubes – stood a chance of prolonging life for Bunny Olenick but in a condition they knew she would abhor.

In the era of modern medicine, there is often no easy way to navigate between an acceptable quality of life and a death with dignity. That was underscored by two recent studies in the New England Journal of Medicine showing that some aggressive measures might actually increase pain and speed declines among frail elderly.

Related Content

• Living Wills Often Ignored
• Hospice, Palliative Care Aim To Ease Suffering

But palliative care specialists, relatively new players on the health care scene, offer comfort, support, pain control and, if requested, spiritual counsel to people such as Olenick’s family, helping them sort through often confusing and ambiguous medical options. Unlike hospice care, which requires patients to forgo aggressive medical care, palliative care allows patients to continue any level of medical care they desire. They help people make tough decisions that are less about dying than about how they want to live at the end of their lives.

Palliative care specialists also have strong opinions about how the American health care system should be changed to help people confront the realities of their illnesses, grapple with their fears and ultimately be at peace with their decisions. In their vision, medical decision-making for critically ill patients would include information about options at the end of life.

Over the summer, the end-of-life issue touched off a political firestorm over the health care reform proposal being debated in Washington. The Democratic provisions included allowing Medicare to pay for periodic end-of-life counseling, but former Republican Gov. Sarah Palin of Alaska said the legislation would lead to “death panels.”

Some critics remain concerned that legislation that requirement reimbursement for palliative care could nudge people toward discontinuing aggressive medical care. “I would want to make sure that legislation would not tilt the decision-making,” says Dennis Smith, senior fellow in health care reform at the Heritage Foundation. Any end-of-life decision, he says, must rest with patients, their families, their doctors and their spiritual advisers with no outside pressure.

Supporters argue that palliative care strives to get patients and their families talking about their own values and wishes, and then carry them out. Studies show the frank discussions that palliative care engenders can ease pain, forestall guilt and increase the chances of a peaceful death. And, significantly, they can save money.

What Would Bunny Want?

Like most families with a terminally ill loved one, Olenick’s sons were not thinking about money. They were thinking about what she would want.

Their mother, whose passions were the arts and progressive politics, had lived an active and intellectually engaged life. Bunny lived about half of her life in New York, where she was assistant director of an art center on Long Island. When she and her family moved to Boston, settling in Brookline, she worked as an executive producer at the public television station, WGBH, where she created cultural programming including ice ballets, musicals with political themes and Soundings, a series designed to make the music of contemporary composers understandable.

She became tech-savvy enough to exchange daily text messages with her son Steve, a lawyer in Hubbardston, Mass. Her son Phil, president of the recording company Audiolink, and his fiancée Gwen Frankfeldt, live in nearby Cambridge and were frequent visitors to her Brookline apartment.

Steve and Phil Olenick paid close attention to her every move and gesture following her stroke. Unsure if she was asleep or unconscious, Bunny’s sons saw that she wouldn’t wiggle her toes on command – but she would return a hand squeeze. She repeatedly pulled out a temporary feeding tube.

Olenick had done all she could to give her family instructions about her death. She had spoken to her sons about her wishes, filled out an advance directive, a living will, and had named her sons as health care proxies – all legally accepted documents and procedures designed to insure that a person’s end-of-life wishes are spelled out and honored. Yet even they weren’t prepared for the many difficult questions they faced.

‘Why Am I Still Here?’

Bunny Olenick’s sons knew of her longstanding wish not to live in a highly dependent state. A few months before her stroke, when she fell and suffered a broken pelvis, thumb and upper arm and a detached lens in one eye. She spent five days in an intensive care unit, followed by seven weeks in a rehabilitation center. When her ophthalmologist told her that her vision would not get better, she was distraught. “I remember her saying, ‘Why am I still here?’ ” says Phil Olenick.

She never recovered fully, couldn’t drive any longer, was annoyed by her walker, and sometimes didn’t have the energy to join her friends in lunch or discussion groups.

Her sons saw her gestures and her rebellion against the tubes in her body as indications that she was ready to die. It was time to be direct. “Do you want to live?” her son Steve quietly asked her. She shook her head “no.” To convince himself that she understood, he persisted. “Do you want to die?” he asked. She nodded her head, “yes.”

He was as sure as he’d ever be. “I could see that she was afraid she’d live,” says Steve. “I kept saying, ‘Don’t worry, Mom. We’ll do what you want.'” Phil told her that her granddaughter, Jean, away at college, was on her way.

Her sons said that before her stroke, they had believed that they understood her wishes. Yet when they examined the decision-making grids and flow charts of her written instructions, they were confused about the details of the many complex options. She had decided that she didn’t want to be intubated or put on life support. Did that preclude temporary nasogastric tubes for nutrition? A respirator was against her wishes, but what about a short-term oxygen mask?

One neurologist told them it could be months before they knew the extent of her potential recovery. Another neurologist said it was unlikely she would regain the abilities to get out of bed, communicate or feed herself. A nurse was even more pessimistic, “saying, ‘I’ve seen a lot of this and, believe me, she’s not going to get better,’ ” recalls Steve Olenick.

With uncertain medical opinions, they called on Dr. Muriel Gillick, a palliative care specialist. “She was very neutral, very supportive,” says Steve Olenick. “By no means did she ever suggest that our mother shouldn’t be treated.”

She encouraged them to explore tough questions. How much function would Bunny Olenick need to regain in order to live a life she would deem satisfactory? How would she feel about living bedbound, either in a nursing home or with around-the-clock home care? She explained that when a neurologist talks about partial recovery, the doctor may mean wiggling a toe, not walking, talking, eating and interacting.

“She was dying, and would die no matter what they did,” says Gillick. “The issue wasn’t whether she would live or die. It was what the path was going to look like.”

‘This Is A New Experience For Mankind’

Predicting who will find an acceptable quality of life from modern medicine, and who will receive treatment that proves futile, frustrating and cruel can be next to impossible. Sometimes doing something is more harmful than doing nothing.

“I’ve had older, dying patients who would try to turn to Bible stories to get them through. But no one in the Bible died like this,” says Joanne Lynn, director of the Washington Home Center for Palliative Care Studies and author of books including Sick to Death and Not Going to Take it Any More. “This is a new experience for mankind.”

The players in each unique end-of-life drama often speak in what amounts to almost different languages, says Rev. George Handzo, vice president of HealthCare Chaplaincy in New York City, which provides palliative care. Physicians, speaking medicalese, can rattle off percentages, procedures, probabilities and a laundry list of interventions: respirators, resuscitation, feeding tubes. Patients are listening through a filter of their own values: Will I recognize my children? Will I walk, get out of bed, or taste food again?

“The medical system is talking science,” he says. “Families are thinking religion and values.”

A range of studies since 2000 have shown that palliative care programs increase patient comfort and relieve symptoms while improving the lives of caregivers and families.

The programs also save money. A study of 25,000 patients reported in the Sept. 8, 2008, Archives of Internal Medicine found that those who received palliative care and were discharged cost almost $1,700 less than those who didn’t receive palliative care. Among patients who died in the hospitals, those who received palliative care cost an average of nearly $5,000 less than those who did not receive such care.

The savings come, in part, when patients and their families choose less aggressive treatment. In his book, “Hard Choices for Loving People,” chaplain Hank Dunn describes both the benefits and potential hazards of typical end-of-life aggressive medical treatment. For example, less than 2 percent of frail, elderly patients survive a CPR attempt, and those who do could suffer broken ribs, punctured lungs or irreversible brain damage.

Yet in hospital intensive care units, short of a specific “do not resuscitate” order, CPR is the default response when a heart stops. “I think it’s insane that we offer patients and families interventions that have a 1 percent chance of doing any good, are extremely expensive and just don’t work,” says Gillick.

It is that type of intervention that Bunny Olenick’s sons sought to avoid.

Steve and Phil knew that there was a window of time following her stroke when their mother might die gently, and it was during that period that they decided to forego treatment for her in the hospital’s intensive care unit.

She was moved to a medical ward and put on comfort care. Four days after her stroke, Jean arrived. She brushed her grandmother’s hair and spoke softly. And as though waiting for that last good-bye, on Dec. 22, 2008, Bunny Olenick died peacefully.

ºÚÁϳԹÏÍø News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about .

USE OUR CONTENT

This story can be republished for free (details).

Related Content

• Bunny’s Last Days: When Living Will Isn’t Enough
• Hospice, Palliative Care Aim To Ease Suffering

“In the 1970s, we had a great confidence that there were some simple reforms that would help,” says Dr. Daniel Callahan, cofounder and president emeritus of the Hastings Center, a bioethics research center. But the reforms haven’t materialized, he says. A 2004 survey by FindLaw, which provides online legal information, found that 36 percent of Americans have a living will.

Even when people have filled out living wills, doctors often ignore them. “Good deaths are fewer than bad deaths,” says Rev. Dr. Walter Smith, clinical psychologist and CEO of HealthCare Chaplaincy, a New York research and clinical practice organization that combines palliative care with multifaith spiritual care. “When people’s wishes in the end are not honored, that’s a bad death.”

Living wills may be asking the wrong questions, says Dr. Terri Fried, researcher at the Veterans Affairs Connecticut Healthcare System. Her study in the April 4, 2002, New England Journal of Medicine, found that when older people with serious illness and limited life expectancy were told details of the outcomes and consequences of treatment, 88 percent of those who would accept lesser disabilities said they would opt out of aggressive treatment if it rendered them bed bound, unable to get to the bathroom alone, unable to recognize loved ones or in need of round-the-clock help.

“If you look at the language of living wills, they say ‘I would, or would not, want to receive X intervention,” says Fried. Better questions, she said, would probe how people want to live, or under what conditions they would not want to live.

ºÚÁϳԹÏÍø News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about .

USE OUR CONTENT

This story can be republished for free (details).

Related Content

• Bunny’s Last Days: When Living Will Isn’t Enough
• Living Wills Often Ignored

Palliative services are designed to help patients and their families sort through their options – ome of which may help restore the patient, while others may increase suffering for a minimal health benefit.

Recognized in 2007 as a specialty by the American Board of Medical Specialties, palliative care focuses on improving quality of life, regardless of treatment choices.

It is provided by a team headed by a doctor or nurse trained in the specialty, says Dr. Porter Storey, executive vice president of the American Academy of Hospice and Palliative Medicine. Most teams have a social worker who can help families find community resources such as home health or nursing home care, and many have a professional chaplain to provide spiritual counseling. Other team members can include a patient’s other doctors, physical therapists, dieticians, pharmacists and volunteer caregivers.

Patients or their families can ask their physician for a consultation with a palliative care team. “We are often called in when things are complicated and no one knows what to do next,” says Storey.

Sometimes, the consultation will result in a patient deciding to forego further aggressive treatment. But that’s not always the case. “In my practice I’ve seen people who thought they couldn’t tolerate more chemo because of nausea,” says Storey. “When that problem is taken care of, they can get more treatment. We often enable people to get the treatment they need.”

But palliative care isn’t always available. A 2005 report by the American Hospital Association found palliative care teams available in 70 percent of U.S. hospitals of 250 beds or more – but only in 30 percent of all hospitals.

To arrange for a palliative care consultation, Storey says, call your hospital to see if they have a team. Or call a local hospice provider. While hospice organizations provide a different kind of care, most can help people find palliative care specialists. “Lots of hospices are trying hard to fill the gap, working in collaboration with palliative care,” says Storey.

ºÚÁϳԹÏÍø News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about .

USE OUR CONTENT

This story can be republished for free (details).

LYNDONVILLE, Vt. — When Rita Pinard learned she had diabetes three years ago, she never imagined she would end up in an ambitious experiment that has become part of the national health care debate.

Initially, she didn’t think her diagnosis was all that bad. Her physician, Dr. Joyce Dobbertin, didn’t seem alarmed. “She gave me a spiel about losing weight and exercising and told me to come back in three months,” says Pinard, 57, who promptly ignored the lifestyle advice.

But in January, when Pinard’s blood sugar shot up, Dobbertin took a different approach. She turned her patient over to a nurse, a dietician and a diabetes educator who alternately encourage and nag Pinard to take steps to control her disease.

Pinard’s case is part of a state effort to improve care and reduce costs for the chronically ill. Under the approach, primary care doctors get extra money to put together teams, which might include nutritionists and behavior specialists, to treat people with illnesses such as diabetes, asthma and heart disease. They get bonuses if their patients show progress.

This coordinated approach, called “medical homes,” is being tried in Pennsylvania, Wisconsin and Maryland and other states, and is a major issue in the health care overhaul being debated in Washington. President Barack Obama, Senate Finance Committee Chairman Max Baucus, D-Mont., and others have stressed the importance of treating chronic illnesses more effectively.

The reform legislation offered by House Democrats calls for Medicare and Medicaid to conduct pilot programs for reimbursing medical home projects. The Senate Health, Education, Labor and Pensions Committee legislation would provide grants for community health teams that would support a medical home model.

The goal is to begin shifting the health care system from one designed to respond to urgent episodes, such as heart attacks, strokes and broken bones, to one that provides better care for chronic conditions-or, better yet, prevents those problems.

The approach is showing promise. North Carolina and some other states say their efforts are saving money. And early data from the Vermont program-called -show that diabetes patients are achieving slightly better control of their blood glucose levels after just one year-an improvement health experts hope will translate into fewer costly complications.

Still, putting the programs in place on a national basis will not be easy. Inevitably, the programs touch on hot-button issues involving how doctors are paid and health care is organized and delivered. And what works for any individual state could very well flop for the nation. For example, Vermont, with only 623,000 people, is far less ethnically and economically diverse than many other states or the U.S. as a whole.

Improving chronic disease care also means changing ingrained patterns. Primary care and specialty physicians must figure out how to work together better and accept payment changes that reward them not for how much they do but for how healthy they manage to keep their patients. Patients need to work to prevent illnesses rather than just relying on doctors and pharmaceuticals for cures, according to experts.

There is ample evidence that better treatment is needed for chronic diseases, which are responsible for seven out of 10 deaths in the U.S., and eat up 75 percent of health care dollars, says the Centers for Disease Control and Prevention. Some 23.6 million Americans, or 8 percent of the population, have diabetes, and nearly two-thirds of those don’t have their disease under control, according to the American Diabetes Association.

Part of the problem: Many primary care physicians are ill-equipped to deal with chronic illnesses, experts say. When a patient is newly diagnosed, the doctor often takes 10 or 15 minutes to explain a complicated condition, talks up the benefits of a healthier lifestyle, maybe writes a prescription, and tells the patient to come back in three months.

Testing The Model In Vermont

In Vermont, the medical home concept is being tested in two Vermont communities–rural St. Johnsbury, where Dobbertin works, and urban Burlington. Physicians get state grants to put together chronic-care teams that focus on nutrition, exercise and behavioral health.

The goal is to allow doctors to provide services that usually aren’t covered, says Elliott Fisher, director of the Center for Health Policy Research at the Dartmouth Institute for Health Policy and Clinical Practice.

Providers also get bonuses from insurers if the patients make progress according to national quality measures. “All providers in a practice have a stake in having a higher score,” says Dr. Craig Jones of the Vermont Department of Health.

Beyond that, providers in four other communities are focusing on diabetes prevention as a first step toward becoming full-fledged medical homes. The goal is to expand the medical-home concept across the state.

In Pinard’s case, her blood glucose numbers stayed in the safe range for more than two years after diagnosis, and she remained mostly sedentary and overweight. But when her blood sugar rose a few months ago, Dobbertin, a doctor in a group practice, sent her to Mitya Schoppe, a nurse who is the chronic care coordinator for the group’s eight health care providers.

Pinard, who works in an office at a local hospital, was shaken by Dobbertin’s increased concern. “I was devastated,” she says.

Pinard’s team drew up a treatment plan, listened to her concerns and gently nudged her with phone calls, e-mails, clinic visits or home visits to eat better and to exercise. She met with Shauna Brittell, a community health educator, who came up with a walking program. She had weekly meetings with Ginny Flanders, a registered dietician who carefully explained the role of carbohydrates in Pinard’s diet, gave her a glucose meter and told her it was best to eat carbohydrates early in the day.

“I had never been told how to lose weight, or what to eat,” Pinard says. “I couldn’t believe they had people like that who could sit and talk to me about what I needed.”

The Vermont program began in 2003 with just $145,000 from the state legislature. In 2006, the program became a part of the state’s comprehensive health overhaul, which is designed to ensure that 96 percent of residents have health insurance by 2010. The state’s three major health insurers, Blue Cross-Blue Shield, MVP Health Care and Cigna, are required to help pay for the program. Last year, the total funding for the program was $4.8 million.

The team approach makes for a more gratifying job, says Dobbertin. “It’s no longer just me seeing patients appointment to appointment,” she adds, saying she acts as a quarterback, calling the shots but leaving the execution to others.

Physicians have always wanted to follow up with their patients, “but they don’t have the time or resources,” says Ken Thorpe, chairman of the department of health policy and management at Emory University and executive director of the Partnership to Prevent Chronic Disease, a coalition that focuses on the economic impact of chronic disease. Thorpe has worked for the state as a consultant on health care overhaul efforts.

But changing payment methods to funnel more money to primary care doctors raises sticky questions. “The long-term question needs to be asked: What is fair pay? What is a reasonable income?” says Fisher.

Some specialty care doctors may resist, says Hoangmai H. Pham, senior health researcher at the Center for Studying Health System Change, a nonpartisan research organization in Washington. “They’re concerned that eventually the money will have to come from somewhere, including their own reimbursement,” she says.

Indeed, both specialists and primary care physicians are adamant about expecting payment to coordinate care, according to an April study by the research organization.

Figuring out exactly how to set up a medical home is a challenge as well. Physician groups can look for guidance to standards set by the National Committee for Quality Assurance, a Washington nonprofit that provides quality measures of health care organizations. But most of the guidelines have yet to show proven results, says Pham. And some aren’t clearly defined.

These days, Pinard is a believer. She has lost 24 pounds since January, when her care was put in the hands of a medical team. Most evenings, she walks three miles, often with her daughter and grandchildren. “I didn’t go into this expecting people to cure me,” she says. “I know diabetes is mean to people. I don’t want to be babied. They’re part of my team, but I’m doing all the work.”

ºÚÁϳԹÏÍø News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about .

USE OUR CONTENT

This story can be republished for free (details).