I keep a file of clippings from newspapers, journals, and magazines that might some day be used for a column. Most are not used, so I periodically discard some to make room for new ones. Two of the unused clippings were close together and their proximity started me thinking. Both items are well written and cover the same general topic, but make different points. That distinction is important and especially relevant to how we practice oncology.
The first article, by Dr. Atul Gawande is titled “Letting Go: What should medicine do when it can't save your life?” (The New Yorker, 2 Aug 2010). A caption on the first page summarizes the article: “Modern medicine is good at staving off death with aggressive interventions—and bad at knowing when to focus, instead, on improving the days that the terminal patients have left.”
He starts with the sad story of a 34-year-old pregnant woman. She began to cough and was found to have metastatic small-cell lung cancer. Not long after, she delivered a healthy baby. The oncologist explained that the cancer was inoperable but chemotherapy was available that could induce a “response,” and that “some of these responses can be long-term.”
What happened next is familiar to us oncologists. The patient and her family embraced these words and did not want to focus on statistics, which led them to opt for “aggressively managing” the disease. At this point, that seemed a reasonable course of action because of her age and situation.
But the subsequent course was difficult with severe side effects from chemotherapy, recurrent and debilitating pleural effusions, and increasing fatigue. Chemotherapy, which she tolerated reasonably well, was continued, and she spent the next several weeks at home caring for her baby with help from family members. A repeat CT scan, though, showed that the tumor and involved nodes had grown considerably. Another chemotherapy agent was tried, but she had a severe allergic reaction to it and began to lose ground, with increasing difficulty doing ordinary tasks. Another CT scan, though, showed continued expansion of the tumor and spread to the opposite side of the chest, liver, and vertebrae.
Now what? Gawande says that the public and politicians see this as a case of winners and losers, insurance companies, the public taxpayer, the patient and family, etc. But he believes that is the wrong way to look at it. On speaking to a colleague who works in the ICU of his hospital, she told him, “I'm running a warehouse for the dying.” She said only two of the 10 patients in her unit were likely to leave the hospital for any length of time. He then gave examples of octogenarians with terminal heart failure or cancer being sustained with tubes and tests and so forth. “Almost all of these patients had known for some time that they had a terminal condition. Yet they—along with their families and doctors—were unprepared for the final stage.”
Gawande points out that patients have concerns other than prolonging life and avoiding suffering. Surveys have shown that terminally ill patients have other top priorities, such as being with family, having the touch of others, being mentally aware, and not becoming a burden to others.
Our medical system fails to give proper attention to these important concerns. And the result is dealing with the effects of futile therapy: dying in ICUs, isolation from family and friends and no time to say “goodbye” or “I love you” or “I'm sorry” or “It's OK.”
Gawande goes on to describe conversations with hospice workers who complain, rightly so, that patients are sent to them too late to make much difference in the quality of the end of their lives and they often die within a day or two.
So what is the solution? I believe that any attempt to use “top-down” solutions will fail for several reasons. Many patients and their families want “aggressive management” (often with a far less convincing rationale than the young mother noted above); preparing a patient for death is unpleasant for the doctor and requires a lot of face time; we physicians have been trained to try phase 3, 2, 1 and phase X, because maybe we can learn something; or we kid ourselves that the patient may be the one in a million who gets a decent response.
The change, like all major changes in medical practice, should start with physicians and not with politicians and their “death panels,” or with insurance companies.
But oncologists have a poor record of getting terminally ill patients into hospice care in time for a “comfortable decline.” Most patients die within a few days of admission to a hospice, so the hospice becomes like the ICU described above—“a warehouse for the dying.” These late referrals to hospices entirely miss the desirable point of shifting care to one of comfort, family, and a humane approach to death.
So let's look at another approach, reported by Rebecca Mead, also in The New Yorker (“The Sense of an Ending,” 20 May 2013). It describes novel ways to manage progressive dementia, especially Alzheimer's disease, as the patient begins to approach the end.
Alzheimer's and aggressive metastatic cancer are certainly different. There is no effective way to slow or stop the former, and a loss of memory, sensibility, and other bedrock features of being human mark the course. But we also have no effective treatment for advanced carcinoma after the first two tries fail. I believe there are enough similarities that we may learn from the novel approaches to end-of-life care for patients with dementia. Some call it “a comfortable decline.”
As described in the article, the Beatitudes Campus in Phoenix, Ariz.; the Green House Project in Arlington, Va., and the Pioneer Network based in Chicago are meccas for the newer approach to progressive dementia. Beatitudes, for example, has an advanced dementia unit with men and women who can no longer live alone. The atmosphere is more like a hotel than a confinement facility. Meals are offered at the usual times, but patients may eat whenever they wish. They are not forced to shower at specified times as long as they maintain basic hygiene. There is a velvet rope, like at waiting lines in theaters or restaurants, across the elevator door to dissuade patients from getting on the elevator and wandering off. It is effective and humane.
Jed Levine, the head of the Alzheimer Association chapter in New York, visited Beatitudes and made the following comment: “What was most impressive was not what was going on but what wasn't going on—the absence of palpable distress”—apparently a rarity in most institutions that care for patients with dementia.
Thomas Kitwood sowed the seed that started changes in the management of dementia in his 1997 book, Dementia Reconsidered: The Person Comes First. In recommending a different approach to dementia, he said, “The problem is not that of changing people with dementia, or of managing their behavior; it is that of moving beyond our own anxieties and defenses” (italics mine).
The environmental and psychological differences between terminal cancer and terminal dementia may seem a bridge too far for us oncologists to learn from. But reading these two articles back to back has led me to believe we have a lot to learn from people at places like The Beatitude Campus.
We cannot say that we have found the best approach to managing terminal cancer that physicians adopt, and what strikes me is that a more humane, less torturing (for patient, family, and doctors) approach is out there that may be adaptable to the care of terminal cancer patients.
I would like to see senior representatives from Beatitudes invited to the ASCO Annual Meeting to describe the techniques and approaches they are using so effectively.