Preparing for death as care
The role of insurance
I recently spent several hours talking with Bridget, who was in her final experimental cancer treatment. She found meaning in “doing all I can” to survive, and had, in effect, donated her body to science while she was still in it. An attempted trial of an experimental drug left her so near death that the doctors pulled her off the medication.
That day, she was sunk into her bed as if none of the muscles in her body could bear her weight. She had lost over ten pounds and suddenly her teeth didn’t quite seem to fit in her mouth. Doctors came and went, offering the next experimental treatment. She described her journey as a “slippery slope” of experimental treatments, explaining “we tried that, now why don’t we try this? And even now, we think will we regret not having done everything we could.” She said she was ready to talk to hospice, but her physician said she “wasn’t there yet.” Why? Because she was still receiving low doses of chemotherapy to reduce her bone pain and blood transfusions to give her some energy in her last days. These were defined by her insurance as “active treatment,” not “palliative care.”
Why shouldn’t patients be able to plan for death while hoping for life? Shouldn’t this be part of caregiving by physicians and family members? My interactions with Bridget and her doctor took me back many years to a meeting I attended with my husband’s oncologist. He was facing his third cancer recurrence in five years, and had been offered a daunting array of experimental treatments. She said, “There are no perfect answers, but there is a good answer for every patient, given their values.” After a long discussion of the effects of various treatment possibilities, he said, “I’m either going to die of treatment or die of cancer, and I choose the latter.” He was in home hospice for nine months, during which time he completed his own “bucket list” and enjoyed life until it ended.
Clearly, insurance plays a major role in this conundrum. Most insurers will not cover hospice visits while patients are still pursuing “active treatment.” Nor will they authorize any treatment considered “curative” once a patient is in hospice care. For example, once on hospice, Greg could not receive localized radiation on a large tumor that blocked the circulation in his right leg causing severe nerve pain and numerous falls. Radiation treatment came under his insurer’s definition of active treatment. Yet towards the end of life, most “active” treatment is palliative in nature if not by definition.
A few insurers have shifted to “open access hospice,” which allows patients to continue to receive treatment while also receiving the symptom management, counseling, and spiritual benefit of hospice care. Large insurers such as Blue Cross/Blue Shield and Aetna have begun to experiment with open access and have found that patients are more likely to choose hospice if treatment is still an option. Significantly, Medicare has not yet joined this shift.
Most insurers are wary of the potential cost of open access hospice, particularly for patients using high-cost experimental drugs to extend life. Drugs that are typically used to extend life for only a few months can cost tens of thousands of dollars. Tensions between choosing high-cost, often high-toxicity drugs that promise to extend life and lower cost, lower toxicity drugs that may also extend life but are prescribed for palliation are complicated by the “fight to the death” mentality of most oncologists and other physicians. A recent study of attitudes among oncologists found that 62% of those surveyed believed that $70,000 was a reasonable price for a drug that extended life by 2-4 months, while an additional 20% approved if the drug promised 4-6 months. Yet many high-cost drugs actually extend life a few weeks or even a few days. These attitudes can lead doctors to prescribe costly, and sometimes debilitiating, treatments when the patient is not truly aware of the alternatives. And regardless of physican or patients priorities, these costs are likely to limit the adoption of a truly “open access” hospice insurance benefit for some time.
What do we lose as a potentially caring society when physicians and insurers define the fight for life in opposition to the search for a good death? In this dichotomous definition, death is failure for patients, phycians and family members alike, even though it is a human inevitability. In this context. patients and families lose the ability to plan for, discuss the dying process, to say good-bye, I love you, to mend wounds. We fail to manage pain as effectively as we could. We also often vacillate between one bad death and another, either overtreating and unnecessarily prolonging life in ICUs or undertreating in emergency rooms.
I do not suggest that hospice is for everyone. Even Alice wanted to leave no treatment stone unturned before she sought hospice help. I do suggest that a caring society should provide patients and families with every resource to prepare for death and that patients should not need to face these tough decisions alone.