special report

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Caring For Kevin: An Autistic Man, An Exceptional Doctor, A Life Renewed

Kevin Fitzgerald, after surgery, his vision restored (George Hicks/WBUR)

Kevin Fitzgerald, after the second of two eye surgeries, with his vision restored (George Hicks/WBUR)

By Rachel Zimmerman

Kevin Fitzgerald is parked in a wheelchair near a set of elevators at Boston Medical Center, tense with fear.

He’s a big guy, nearly six feet and about 280 pounds. But because of his severe autism, Kevin can’t verbalize his thoughts. He can only moan.

Dressed in her scrubs, Dr. Susannah Rowe, Kevin’s eye surgeon, sits on the floor next to him. While waiting for a heavy dose of anti-anxiety meds to calm her patient, Rowe practices what she calls “verbal anesthesia.” “It’s OK to be afraid,” she tells Kevin. “Want to hold my hand?”

Institutionalized since childhood, Kevin, now 56, has been losing his sight for the past two years to the point that doctors said he can see little more than shadows. He’s here at BMC awaiting cataract surgery, a fairly simple procedure that generally takes about 30 minutes in the operating room. But for Kevin, who has long feared doctors and has a history of aggressive, unpredictable behavior — like hitting himself or inadvertently hurting others or running away when he’s in distress — the procedure isn’t simple at all.

Surgeon Susannah Rowe, anesthesiologist Oleg Gusakov, M.D. and nurse anestheticst Dale Putnam, CRNA, prepare Kevin for surgery. (George Hicks/WBUR)

Dr. Susannah Rowe, anesthesiologist Oleg Gusakov and nurse anestheticst Dale Putnam in the pre-op room with Kevin. (George Hicks/ WBUR)

It’s not simple for the doctors, either. They’re practicing a special art: medical care for the disabled and mentally ill. It often breaks the rules of traditional care, loses money for their practices and can even put them at physical risk if a frightened patient spins out of control.

But there’s a huge need for such specialized care. As many as 50 percent of people with intellectual disability (defined as an individual with an IQ of 70 or less and difficulty functioning in daily life, among other criteria) have vision problems, according to state experts. And a far higher proportion of these disabled patients have severe vision problems compared to the general population.

With delayed or limited access to treatment, these men and women can begin to lose their already-tenuous connection with the physical world; and their behavior, driven by fear and the inability to understand why things are growing darker, can deteriorate further toward what looks like aggression. Rowe, the surgeon, says anyone with a disability or severe mental illness whose mood, anxiety or behavior gets worse should immediately have their vision checked.

Join doctors in the operating room for Kevin’s surgery. Warning: It gets graphic.

Kevin’s situation may seem exceptional but he’s not alone. According to the state Department of Developmental Services, there are about 32,000 adults and children with intellectual disability (what used to be called mental retardation) eligible for services in Massachusetts. About 9,000 of these adults live in group homes.

But not everyone with an intellectual or developmental disability is getting the care they need, experts say. Consider:

  • A recent Massachusetts study found that people with autism still face significant barriers in accessing medical care, and it’s worse for patients like Kevin, who can’t fully communicate.
  • A 2009 survey of eye specialists from around the state found that while most providers believe patients with intellectual disabilities require 30-60 minutes longer for a medical appointment, the vast majority of the specialists didn’t allot that extra time.
  • According to a 2004 Public Health Reports article: “Research indicates that most individuals with developmental disabilities do not receive the services that their health conditions require…[and] individuals with mental retardation face more barriers to health care than the general population.

Research has also demonstrated that many primary care providers are unprepared or otherwise reluctant to provide routine or emergency medical and dental care to people with developmental disabilities.”

Andrew Lenhardt, a primary care doctor in Hamilton, Mass., who treats many disabled patients, including Kevin, says: “The level of dignity and respect and basic medical care that’s given to people with disabilities is often meager…These people can’t advocate for themselves, they’re an easy target to be treated inadequately or poorly.”

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Surgery Under Scrutiny: What Went Wrong With Vaginal Mesh

On a rainy night in early September, six women gathered for dinner at a Macaroni Grill restaurant in Gaithersburg, Maryland. They had come from around the country: Utah, Georgia, Florida, New York, Texas. But their mood wasn’t festive. All six were in town to speak publicly about their personal medical traumas in front of an advisory panel for the U.S. Food and Drug Administration.

Between them, the women figured they had undergone 45 surgical procedures to try to undo the damage resulting from vaginal surgery using synthetic mesh devices. The mesh implants were supposed to free them from the intimate discomforts that millions of women face after childbirth and as they age: pelvic organ prolapse, in which stretched, weakened tissues can allow the bladder or other organs to sag or bulge into the vagina, and stress urinary incontinence, which can lead to involuntary leakage with every laugh or cough. Once implanted, the hammock-like mesh was meant to shore up the supportive pelvic tissues and help keep sagging organs in place.

But rather than fix their problems, the mesh led to a range of far more awful complications. For some, the material eroded through the vaginal lining, causing infections and nerve damage, as well as excruciating pain, the inability to sit down or urinate without a catheter, multiple hospitalizations and a halt to their sex lives.

“I was in the most horrendous pain I’ve ever experienced,” said Amy Gezon, a 43-year-old mother of three and one of the women who testified before the FDA advisory panel. “I finally ended up in the ER after expressing a desire to end my life just to escape the pain. If I knew one-tenth of the information out there in the literature…I would have never consented to this surgery.”

A Higher-Risk Device

The FDA, which has already detailed the serious complications linked to vaginal mesh surgery in a series of public health alerts – one in 2008 and an update this summer – is now considering reclassifying some of the devices into a higher-risk category that would require more evidence of safety and effectiveness, including clinical studies. Continue reading

Poster Child For Coming Health Reform: ‘Better Care Is Cheaper’

For a glimpse of the future of Massachusetts health care as Gov. Deval Patrick envisions it, consider Phyllis Minsky.

CommonHealth’s interview with Phyllis Minsky, whose story suggests big potential savings in health care costs in Massachusetts.

At 82, Phyllis is complex. Medically, that is. Widowed young and veteran of 35 years in the financial services industry, she comes across as a resilient spirit, all backbone and humor and gratitude for small favors. But there’s no denying she’s up against a lot: diabetes, asthma, chronic lung disease, a blood pressure problem that leaves her prone to sudden blackouts. At one point, she was on 20 different medications.

Luckily, Phyllis has a secret weapon these days: Wendy Atamian. A nurse with 35 years of experience, Wendy is Phyllis’s “nurse care manager,” which means that she stays on top of Phyllis’s health: She helps coordinate her doctors’ visits and medications; sets up home-based services after hospital stays; advises her if she’s in pain or can’t sleep. Wendy even suggested a simulator test to help determine whether Phyllis should still be driving.

“Wendy is always there when I need her,” Phyllis said. Together with Phyllis’s primary care physician, Dr. Michael Bierer, “I think they’ve saved me many trips to the emergency room and urgent care” — “which is a blessing.”

15 percent of Medicare patients make up over 75 percent of health care spending.
It’s not just a blessing for Phyllis — it’s a money-saver for the health care system. Older patients with multiple chronic diseases are the biggest consumers of health care; some 15 percent of Medicare patients make up over 75 percent of health care spending. Cutting the costs of their care is a must if the relentlessly rising health cost curve is ever to be bent — the goal of the next phase of Massachusetts reform.

Multiply Phyllis Minsky by 3,200. That’s the number of patients in the five-year-old pilot project that she’s part of, the Mass General Care Management Program. Begun at Mass General, the care management program has now expanded to Brigham & Women’s Hospital and the North Shore Medical Center, for a six-year total of more than 8,000 patients.

And that may be only the beginning.
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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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