DC Medical Malpractice & Patient Safety Blog

That's all that a sick friend needs to hear from you. Two sentences. Nine words. Too often, what they hear instead is silence -- you don't know what to say, you're afraid to say the wrong thing, and so the friend winds up feeling abandoned in a time of need. Or, just as bad, friends will weigh in with unsolicited advice, or insensitive comments.

The best thing to do is to be present. And to listen. And respond.

More thoughtful comments and experiences from patients can be found in the NY Times blog piece on "When friends disappear during a health crisis."

Medical malpractice lawsuits are so frequently blamed for the high cost of medical care that when another, actual cause (not apocryphal, like lawsuits) of expensive medicine comes around, it's almost hard to believe. Exhibit A: End of Life care. This is the single most expensive segment of Medicare -- the last 30 days of someone's life, when aggressive practitioners throw everything they've got at an elderly patient's failing body to see if a miracle might result.

It's also a time of life that is virtually immune from malpractice suits. Few if any lawyers would take a case that argued the doctors were insufficiently aggressive, and Grandma might have lived a few more months.

The practitioners are not aggressive solely because they're paid to be, although it cannot hurt. Families in denial often egg doctors on to do everything possible technologically, when what the dying patient needs is peace, comfort and a chance to be with one's relatives.

Here's a story onend of life care, courtesy of one of our favorite blogs, The Pop Tort.

The handsome silver-haired doctor in the long white coat, standing at the nurse's station in a photograph accompanying a New York Times story, is the national medical director for a chain of for-profit long-term care hospitals. But he puts in barely ten hours a week for Select Medical Corporation, which has no physicians in its top management. Or nurses for that matter.

The founders of the publicly traded company, a father and son team, have made about $200 million since they started Select in late 1996, according to the Times. They also own stock worth many millions more.

From barely a handful in the entire country in the 1980s, the number of long-term care hospitals now exceeds 400, with growth fueled by Medicare payment rules that penalize hospitals when patients languish too long with a particular condition but reward those same hospitals if they can transfer the patient to a long-term care facility. Many of the long-term care hospitals -- and nearly all in the Select chain -- actually consist of a wing or floor within another hospital, so patients can be transferred just a floor or two and for reimbursement purposes be tagged as located in a wholly different facility.

According to the Times report, many of the long-term care hospitals have no doctors in the building overnight as routine practice. They have heart monitors watched by untrained clerks, or not watched at all. Patients have died from lack of appropriate attention.

Here are government inspection reports obtained by the Times from a Freedom of Information request. Statistics show that bed for bed, Select hospitals have four times as many official findings of poor quality than the average hospital.

Medicare rules pay long-term care hospitals more if the patient is hospitalized at least 25 days, but then reimbursement declines drastically for patients who need longer treatment. It's no surprise that the average length of stay at Select hovers at 25 days.

What is the appropriate role of profit making in American health care? Money can certainly drive improvements in technology and medications, but we have to question the role of profits in routine medical care.

Almost nothing is worse in medicine than a cold-hearted delivery of bad news that sucks all the hope out of a patient's lungs. And almost nothing is better than an honest dialogue between doctor and patient that explores the hopes and fears of a patient faced with a very serious condition, in a way that allows for hope in some form to continue to exist. Because we know that when all hope ends, life does too.

Dr. Chris Feudtner, a bioethicist at Children's Hospital of Pennsylvania, has a sensitive essay on this topic in the New England Journal of Medicine. He titled it "The Breadth of Hopes."

His idea is that all of us have a range of hopes that are necessary to carry on with daily life; some are fanciful and others are very concrete and specific.

Doctors need to nurture hope while helping patients redefine what it is they hope for. Even hoping for a miracle in the face of an incurable disease is not necessarily something that doctors should scoff at. As he writes:

Judging such a hope as either realistic or false misses the point; rather, we should judge ourselves as clinicians by the degree to which we can help nurture our patients' collection of diverse hopes.

This is not to say doctors should encourage unrealistic Pollyanna thinking by patients.

Dr. Feudtner hopes to develop better tools to help patients and families in the emotional end of coping with disease. He concludes: "as clinicians, we need to more carefully work through what separates the appropriate management of hopes from their inappropriate manipulation, because whether we want the responsibility or not, we constantly interact with our patients' hopes."

Many elderly patients suffer protracted, and expensive, deaths as health care providers pummel them with technological fixes for bodies that have already worn out. The dilemma is that while no doctor wants to give futile care that tortures more than it heals, no one also wants to be guilty of euthanasia or abandoning their patient.

A group of Roman Catholic nuns at a convent near Rochester, New York, has a new/old answer to this dilemma: Involve the patient in a warm and loving community where the patient's wishes are always paramount, but death is faced with realism, and care goals are clarified long before any final crisis. As Jane Gross reported in a beautiful article in the New York Times:

A convent is a world apart, unduplicable. But the Sisters of St. Joseph, a congregation in this Rochester suburb, animate many factors that studies say contribute to successful aging and a gentle death — none of which require this special setting. These include a large social network, intellectual stimulation, continued engagement in life and spiritual beliefs, as well as health care guided by the less-is-more principles of palliative and hospice care — trends that are moving from the fringes to the mainstream.

For the elderly and infirm Roman Catholic sisters here, all of this takes place in a Mother House designed like a secular retirement community for a congregation that is literally dying off, like so many religious orders. On average, one sister dies each month, right here, not in the hospital, because few choose aggressive medical intervention at the end of life, although they are welcome to it if they want.

“We approach our living and our dying in the same way, with discernment,” said Sister Mary Lou Mitchell, the congregation president. “Maybe this is one of the messages we can send to society, by modeling it.”

I recommend reading the entire article, which is one more example of a spirit that I have tried to imbue in my book, “The Life You Save: Nine Steps to Finding the Best Medical Care — and Avoiding the Worst.” When patients become actively involved in understanding their own health care, they can make decisions that best fit their own values.