DC Medical Malpractice & Patient Safety Blog

The question will never be answered with any certainty. But it's worth thinking about, because many of us will eventually be required to make our own hard choices about what kind of treatment to get for a scary disease.

The known facts about Jobs are these. He had an unusual form of slow-growing cancer of the cells in the pancreas that make insulin. His kind of cancer is called an "insulinoma" or an islet cell cancer. When the cancer was first found in 2003, he put off surgery to cut it out for nine months, while he tried dietary treatments advocated by his friend and diet doctor Dean Ornish.

Ornish is a controversial physician with one foot in the camp of scientific medicine but the other dipping deep into the stream of unproven, "alternative" therapies. He advocates a vegan diet that most people find very difficult to adhere to.

Did the delay in surgery doom Jobs to an early death? The best answer seems to be, "Hard to say, but it didn't help him any in the long run." A blog called Science-Based Medicine, written by oncologist David Gorski, has some interesting thoughts. I enjoyed his piece, and especially his back-and-forth with a commenter on his site who identified himself as a medical oncologist. Here is Gorski's bottom line about the allure of "magical thinking:"

Just eat this root, do these colon cleanses, let this healer manipulate your energy fields, and everything will be fine. No nasty invasive surgery that will permanently alter your body and how it functions. No poisonous chemotherapy. Unfortunately, reality doesn’t work this way, no matter how powerful the reality distortion field. Ultimately, reality intrudes, as it did for Jobs. When it did, when a followup scan apparently revealed that his insulinoma had grown, Jobs realized he had made a horrible mistake and tried to correct his course by undergoing surgery right away. It’s not clear whether his time in his self-created medical reality distortion field ultimately led to his demise or whether his fate was sealed when he was first diagnosed. Again, there’s just too much uncertainty ever to know for sure, and even if Jobs did decrease his odds of survival significantly it’s impossible to say whether the delay meant the difference between life and death in his specific case. What is clear is that no reality distortion field can long hold cancer at bay. Reality always eventually wins over magical thinking, no matter how much it might appear that magical thinking is winning at any given time.

My own take is this:

Cancer is scary, and even brilliant patients like Steve Jobs can become desperate, and tempted into trying an unorthodox treatment – remember laetrile? And although many cancer treatments have terrible side effects, at least they are based on science, not wishful thinking. Before you or a loved one decides to depart from what established medicine recognizes as the best practice for your diagnosis, learn about the science, not the magic, involved in those choices.

To help separate reality from fantasy, consult Quackwatch.com, a nonprofit resource that addresses health-related frauds, myths, fads and questionable therapies.

Paralleling the growth of the hospice industry, the number of hospital-based palliative care programs has more than doubled since 2000. According to a new survey by the Center to Advance Palliative Care, nearly two-thirds of hospitals surveyed had palliative care teams.

Palliative care focuses on easing the symptoms, stress and pain of serious illness, whether chronic or terminal. In the latter case, it often precedes hospice care, whose goal also is to alleviate suffering, but only for people who are terminally ill.

The report concludes that, thanks to the growing cost of treating an aging population and because it’s simply more humane, palliative care should receive more financial support. The researchers say that previous studies conclusively demonstrated that many seriously ill patients suffer treatable pain and distress, and are financially devastated because of the high costs of medical care. Palliative care, they argue, offers a logical and patient-centered approach to improving medical care by focusing on quality of life and by matching to patient and family needs.

As reported by Kaiser Health News, unlike hospice services, palliative care programs are more common at nonprofit hospitals. That accounts for some stark geographic differences in the survey results – nonprofit hospitals are less common in the South.

As described on WebMD, a Center to Advance Palliative Care poll showed that 9 in 10 people have no idea what palliative care is. But once it's explained to them, 9 in 10 say they would want it for themselves or for their loved ones.

But that requires a prescription – only a doctor, not the patient or relative – can request palliative care. And sometimes you must remind your doctors that you need to be treated as a whole patient, not a body part. If a doctor is focused on treating your tumor, he or she might not ask about your trouble sleeping, your skin rash, how exhausted your spouse is. But that’s exactly the job of a palliative care professional.

Now, for the study’s state-specific report card.

Regions where larger hospitals more were most likely to have palliative care teams:

• District of Columbia -100%


• Vermont - 100%


• Maryland - 90%


• Nebraska - 93%


• Minnesota - 89%


• Oregon - 88%


• Rhode Island - 88%


• Washington - 83%

The District, which only has big hospitals, is the only jurisdiction where every hospital patient has access to palliative care.

States where hospitals were least likely to have palliative care teams:

• Kansas - 47%


• New Mexico - 44%


• Georgia - 43%


• Louisiana - 43%


• Texas - 42%


• Arkansas - 38%


• Oklahoma - 30%


• Alaska - 29%


• Alabama - 28%


• Delaware - 20%


• Mississippi - 20%

If you or someone you love is planning a hospital visit with the potential for ongoing treatment, find out if the facility where you will be treated has a palliative care program. If not, consider the options within your health plan network, and if none offers a palliative care program, ask your insurance company why not.

And make sure your primary care doctor and your surgeon understand your interest in receiving such care.

Every patient and every doctor know that delivering bad news is something that physicians sometimes have to do. But too many doctors don't realize that the way they communicate can cause terrible and needless emotional injury.

A flat, heartless delivery of bad news can make patients feel abandoned and devastated. A touch of compassion, on the other hand, may not extend a patient's life by a single day, but does make them feel that they are still part of the community of the living.

Patient advocates say that Compassion is one of the four C's that patients have a right to expect. (The others are: Competence, Communication and Convenience.)

William Branch, an internist and professor at Emory University School of Medicine in Atlanta, has conducted studies for two decades to determine if physicians can be taught to be more compassionate.

Dr. Branch maintains that “our healthcare system does not lack compassion,” and that compassion can be taught, though not in a single training session.

In research conducted at five medical schools in 2009, Branch studied two sets of faculty members on their compassion skills as evaluated by their medical students and residents. The students watched the faculty members interact with patients, and they scored those interactions plus the quality of their direct teaching of caring skills.

One faculty group underwent a two-year program that combined experiential learning of skills such as role modeling along with reflective exploration of values through writing narratives and other activities. The other group had no intervention. The study found that the compassion-training group rated significantly more compassionate with their patients.

However, just as it can be taught, compassion also can be lost. A 2008 study of 419 medical students showed that women had twice the empathy scores of men and that scores declined at the end of the third year, when students had begun regular exposure to patients during clinical rotations — exactly at the point where they needed more, not less, empathy. But this trend can be prevented; another study of 209 students at the Robert Wood Johnson Medical School found that empathy was maintained among third-year students who received specialized training.

Source: Washington Post

You can read Dr. Branch’s research paper in Academic Medicine here.

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.