Difficulties in "Letting Go" When Medicine Can Do Little More

From Medscape Medical News
Zosia Chustecka

August 3, 2010 — End-of-life discussions are difficult for doctors, a surgeon/writer admits in an essay entitled "Letting Go" that appeared in the August 2 issue of the New Yorker magazine.

There is a fine balancing act in these discussions between not killing hope and confronting other possibilities, including death. However, "talking about dying is enormously fraught," writes Atul Gawande, MD, a general and endocrine surgeon at Brigham and Women's Hospital in Boston, Massachusetts. He is also an associate professor of surgery at Harvard Medical School, and has been a staff writer at the magazine since 1998.

Many doctors admit to finding end-of-life discussions difficult, and often delay them, as previously reported by Medscape Medical News. It is an issue that many oncologists have to grapple with on a regular basis in their clinical practice, and it is regularly discussed in scientific journals and meetings. But in writing on the topic at length in the New Yorker, a magazine known for arts and cultural essays and humorous cartoons, Dr. Gawande brings the issue to a public forum.

In the article, he asks: "What should medicine do when it can't save your life?"

He illustrates the piece with several case histories. One patient was a young woman diagnosed with advanced lung cancer late in her first pregnancy. Although terminally ill, she was always optimistic that another treatment would help, and Dr. Gawande describes how he was "swept along by her optimism" and was unable to confront her with her likely grim prognosis.

"Doctors are especially hesitant to trample on a patient's expectation. You worry far more about being overly pessimistic than you do about being overly optimistic," he writes.

At the back of his mind was the "long tail of possibility" that this patient might be the one who defies the odds.

There is nothing wrong with such hope, he says, unless "it means we have failed to prepare for the outcome that is vastly more probable." In the case of the patient he was describing, this hope unfortunately left her and her family unprepared to deal with her death.

"We've created a multimillion-dollar edifice for dispensing the medical equivalent of lottery tickets — and have only the rudiments of a system to prepare patients for the near-certainty that those tickets will not win," he writes.

Issue Is Pressing and Expensive

"The issue has become pressing, in recent years, for reasons of expense," he points out. The terminally ill account for a lot of the soaring cost of healthcare — 25% of all Medicare spending goes toward the 5% of patients in their final year of life, and "most of that money goes for care in the last couple of months, which is of little apparent benefit."

Spending on cancer tends to follow a pattern, he notes. There are high initial costs as the cancer is treated, and then, if all goes well, these costs taper off.

For a breast cancer survivor, the average medical spend in 2003 was $54,000, most of it on the initial diagnosis, surgery, and where necessary radiation and chemotherapy.

However, for a patient with a fatal version of the disease, the cost curve is U-shaped, rising again toward the end, he points out. For a breast cancer patient with incurable disease, the average medical spend in the last 6 months of life was $63,000 in 2003.

"Our medical system is excellent at trying to stave off death with $8000-per-month chemotherapy, $3000-a-day intensive care, and $5000-an-hour surgery. Bt ultimately death comes, and no-one is very good at knowing when to stop."

When to Stop?

This question of when to stop is a modern problem, Dr. Gawande points out.

"For all but our most recent history, dying was typically a brief process. . . . The interval between recognizing that you had a life-threatening ailment and death was often just a matter of days or weeks."

"These days, swift catastrophic illness is the exception; for most people, death comes only after long medical struggle with an incurable condition — advanced cancer, progressive organ failure. . . . In all such cases, death is certain, but the timing isn't. So everyone struggles with this uncertainty — the how, and when, to accept that the battle is lost."

In the article, Dr. Gawande praises hospice care, and gives several examples of patients who greatly benefited from such care, including a young man with advanced pancreatic cancer. But he admits that all this was a revelation to him; his new understanding was gained first-hand after having accompanied a hospice nurse on her rounds.

Previously, he had equated hospice with "giving up" and a morphine drip, and he is certain that this view is shared by many doctors and patients.

In a live phone-in question-and-answer session with readers, a hospice worker commented on how patients and their caregivers often say "we wish we'd known about you sooner," and asks: "Shouldn't this be a wake-up for physicians? For the benefit of their patients and their patient's families?"

The hospice worker also noted that there appears to be a reluctance among physicians to discuss hospice with their patients, but at the same time there is an enthusiasm for "palliative care." The 2 are actually very similar, she pointed out: "What can we do to make physicians understand that hospice is just an extension of palliative care?"

Another person phoning in highlighted cultural differences, and described several scenarios in the Netherlands in which patients' wishes to stop treatment and die were respected. Dr. Gawande acknowledged the point, and wondered if there is more of a problem in the United States than elsewhere. He mentioned statistics from Sweden, where there has been a shift from around 90% to 30% in cancer patients dying in hospital over the past 2 decades, although he noted that some American centers have seen similar shifts in end-of life care.

"Fear of death (and facing death) seems to be a uniquely 20th century American problem," suggested one reader in an online commentary. "Why shouldn't there be continuous end-of-life discussions, held more casually during life's progression and not under the gun (if you will) at the end of one's life."

That reader criticized doctors for not being straightforward in discussing death, and called for more honesty. This was also a theme that emerged from a panel discussion at the National Comprehensive Cancer Network earlier this year, when experts urged "straight talk with compassion."

However, Dr. Gawande questioned whether these issues "are THAT culture-specific. I think it is common everywhere to come across people who hope against hope that they can be saved," and suggested that this is "just human nature."

"It seems to me that our job in medicine is to just deal with it. If we have to wait for people to stop yearning for the long tail — for the lottery ticket — in order to help them, we will be hurting a lot of people for a long time to come," Dr. Gawande said. "Instead, we need to become more effective in using the techniques that experts already have for walking people through these moments in their lives."

One way to improve is through training. "Experience alone does not produce improvement. You can communicate badly for 30 years," he pointed out.

"But deliberate practice with coaching makes for measurable improvements," he said. "And that's likely what we need in medicine. We train and retrain for surgical skills. We probably need to do so for these discussions with terminally ill patients, as well," he concluded.