Think Olive Garden: Innovative Patient/Family Advisory Councils

The CEO of Beth Israel Deaconess Medical Center recently had the pleasure of touting a major national award for patient satisfaction won by their NICU (neonatal intensive care unit): the Family-Centered Care Award, by the Society for Critical Care Medicine. I hope to describe their advisory council's role in that in a future blog post. In an earlier post on the role of the Advisory Council for the adult ICU, Paul Levy described their use of Family Pagers:

Our Advisory Council pointed out the feeling that they had to stay in or near the ICU at all times, in case anything happened. We now provide pagers (think Olive Garden) to families that allow them to go to the coffee shop, cafeteria, and nearby shops with the confidence that we can page them if they are needed. These have received rave reviews from families, nurses, and doctors alike.

Massachusetts General Hospital has been using several patient/family councils. One helped develop a "pathway for cardiac services" that portrays the steps in a patient's treatment, so patients will know what will happen during their hospital stay. I hope to describe this in more detail in a future blog post.

At Cooley Dickinson, the annual report in 2009 on the PFAC told of another committee involving consumers that performed "a SNF [skilled nursing facility, i.e., nursing home] hand-off communication survey, which resulted in an immediate improvement in patient and post-acute provider relationships through the discharge process."

BRAVO TO THESE PIONEERING HOSPITALS!

Advice to patient advocates: Tell your families and clients to get their care at hospitals like these that actively listen and heed the patient's voice.

Read another story about innovative patient/family advisory councils.

More days happy than in the blues: A coach for diabetes care

Maria is a 66-eary-old Hispanic woman with diabetes. She receives her primary care at Massachusetts General Hospital's Chelsea health center. At her last visit in June of 2006, Maris had far too much glucose [sugar] in her blood; her hemoglobin HbA1c was 12.6, far more than a normal level of about 7. Her doctor referred her to a diabetes "coach," a multilingual, bicultural layman trained to identify barriers to care management and to assist patients in addressing barriers.

After several counseling sessions, the coach learned that Maria was taking one of her medications "only when I feel my blood sugar is too high," and was not taking her other medication at all because "it makes me dizzy." Maria was overweight, and ate a lot of rice, bread, pasta and other carbohydrates, and foods high in cholesterol like pizza, pork, meat, and fried food. She would not eat at all when she felt that her blood sugar was elevated. She was not exercising and reported often feeling depressed and "in the blues."

After working with the coach, Maria began taking both of her medications regularly and eating better. She cut down on carbohydrates and started eating more vegetables and fruit. She also ate more frequently in small portions. Due to her arthritis, exercise was a challenge for Maria, but she managed to walk 20 minutes on most days. In just a few months she lost 30 pounds. After 11 sessions with the coach, Maria felt very pleased with her progress, she is more confident, and has "more days happy than in the blues." When last seen by her coach in December, Maria's hemoglobin HbA1c had fallen to 7.7.

Advice for people with diabetes or another chronic health issue: ask your insurer to assign you a health coach.

Read an athlete’s diabetes story.

Thanks for our source, the 2006 Annual Report on Mass General's Community Benefit Program.

No better way to pay back the universe: A cancer survivor's story

During Thanksgiving weekend in 2005, Henri Engle's throat swelled up. Two weeks later, while watching a movie, he began coughing up blood. He finished the movie before going to the Emergency Room at Massachusetts General Hospital. They took him into surgery immediately, and he awoke in the Oncology unit, diagnosed with a very rare cancer – synovial sarcoma of the throat.

The tall 24-year-old went through four doses of chemotherapy over five months, and six weeks of radiation treatment, twice a day for five days a week. He had to be fed through a gastric feeding tube, and he lost 85 pounds.

Now, he's cancer-free, and at 175 pounds he's in the best shape of his life. How? He attributes his strength to workouts with cast-iron kettlebells – which look like cannonballs, each with a handle, and weigh from 10 to 88 pounds.

Henri encountered personal trainer Anthony DiIuglio, the owner of the first American kettlebell gym, in East Providence, Rhode Island, and began working out. He progressed rapidly under Anthony's guidance. Anthony is himself a cancer survivor. He works with patients while they are undergoing radiation, to offset the scarring and stiffening ("fibrosis") of muscle tissue that radiation can cause.

Henri’s progress prompted him to ask Anthony for a license to open his own Punch Kettlebell Gym. Henri opened the gym this week in Newton Centre, Massachusetts. With the gym, he says, "I get to help people doing something I enjoy – there's no better way to pay back the universe than that. Not everyone gets that kind of direction in life."

Advice: Take heart; people are amazingly resilient. Some find that cancer has led them to find their calling.

Read another inspirational cancer survivor story.

Thanks to Rachana Rathi for the source article in today's Boston Globe.

Every day was a bonus: Heart transplant survivor

John Scripter's heart was failing. Without a transplant, he had six months to live, doctors at Massachusetts General Hospital in Boston said. With a transplant, he had a chance to live five years.

John, then a 45-year-old manual laborer from Greenville, New Hampshire, asked his cardiac surgeon how many heart transplant he had performed. The answer: None. John would be the first.

John underwent the novel surgery in 1985, giving him 22 more years of life. He died Friday, after spending the afternoon with one of his nine children.

"After five years, every day was a bonus," said his wife of 46 years. "It was a day that he might not have had. We lived every day like it was the last. It was still scary because it was a whole new avenue. And he got a second chance. He was so fortunate. We had our good times, we had our bad times. He said, 'You know, I've had it all. It's wonderful. I've seen everything. I've seen my kids grow up. I've seen their kids.'"

Life wasn't easy; John was not able to return to work. He battled heart infections caused by his heart medications, said his cardiac surgeon. He lost his right leg to infection in March.

But he never gave up, said his wife Linda. "He said, 'Look, fit me for an artificial leg and I’ll keep going.'"

Advice: Live every day like it's the last one.

Browse for related stories in the index at the very bottom of this page, or read a story from a blog about zestful living in the bonus round.

Thanks to Anna Badkhen for the source article in yesterday's Boston Globe.

A jolt of pain wrenched him from sleep: Cardiac rehab

Last February, a jolt of pain wrenched him from sleep. It was a heart attack. Ninety minutes later, he was at Massachusetts General Hospital, where doctors cleared a potentially lethal clog from one of his heart arteries.

Then they told Arthur Manjourides, 66, it was time to change his life. They gave him prescriptions for both pills and cardiac rehabilitation. Now he's 55 pounds lighter, and has lower cholesterol – and fewer hours at work.

"I wanted to get better. I wanted to get healthy. I would rather not be alive than have to be crippled by not doing things," he said.

A study in the October issue of Circulation by Dr. William Stason and others said few older survivors of heart attacks (14%) and few heart surgery patients (31%) enter cardiac rehab, though many more would benefit from it. Bypass surgery and artery-clearing procedures don't actually cure patients; they only address the most pressing symptoms of heart disease. Lifestyle changes and medications fix the underlying problems.

Advice to advocates for heart attack and heart surgery patients: Ask the doctor whether cardiac rehab would help.

Browse for related stories in the index at the very bottom of this page, or read a heart story.

Thanks to Stephen Smith for the source article in today's Boston Globe.

Curt was able to get rid of one curse – let’s see if he can get rid of another: ALS patient advocate

Bruce Statham wasn't dying of Lou Gehrig's Disease, he was living with it. For more than a decade after his diagnosis, he lived on, and became a spokesman abut the disease. He helped raise funds for research on ALS, also called Lou Gehrig's Disease, and helped Harvard Medical Students understand what is was like to live with the disease. He died this week at age 39, of complications from ALS.

He worked with the Angel Fund, a nonprofit that raises money for research at the Cecil B. Day Lab for Neuromuscular Research at Mass General Hospital. There, soon after the Boston Red Sox won the World Series, he was invited to introduce pitcher Curt Schilling, who raises money for the National ALS Association. He said, "Curt was able to get rid of one curse; let's see if he can get rid of another."

Advice for survivors: See if you can help others with your disease by being a patient advocate

Read another ALS story, or read more from Bryan Marquard's story in the October 9 Boston Globe.

He’s turning his disease into a business plan: ALS patient advocacy

He was a platoon leader in the Israeli army, and later was accepted to Harvard Business School. Then came an odd tremor in his right forearm. It persisted, and once in Boston, he was diagnosed with ALS. Now, almost three years after his diagnosis of ALS (Lou Gehrig’s Disease, amytotrophic lateral sclerosis), his wheelchair has a Borat sticker.

"Avi moved very quickly from the anger stage after diagnosis to a very applied, entrepreneurial stage when he said, 'Let’s get on with it. Let’s find the solution. Let’s put the resources on the table to empower research,'" said his neurologist, Dr. Robert Brown of Mass General Hospital. He raised money with a guarantee to donors: If there’s no solution to the problem, they would get their money back. With the help of friends from the business school and neurologists, Avi started a scientific competition called Prize4Life. Scientists will win prize money only after solving crucial questions about ALS that could speed the discovery of drugs to slow the disease. The first question, with a $1 million prize and deadline in November 2008, asks researchers to identify markers of the disease’s progression. So far, Prize4Life’s scientific advisors have selected the five winners of small cash awards in the first round.

Learn more at Prize4Life.

Read another of our hero stories, or read Stephen Smith’s source story in Monday’s Boston Globe.