Taking up a public policy matter, I want to highlight Atul Gawande's recent article "Letting Go" in the August 2, 2010 edition of The New Yorker, one of my favorite publications. Gawande's article is written from a surgeon's point of view, and it discusses how Americans deal with the final stages of terminal diseases; specifically, it addresses the "fight until the bitter end" mentality versus the "let's make the most of what I've got" mentality. The article tends to focus on cancer patients, but its points are easily translatable to any terminal disease. The article highlights several different cases where the patients, their families, and their doctors struggle between constant attempts for curative treatments or palliative care.
The policy issue is whether to permit people who are in the final stages of diseases like cancer pursue expensive and sometimes highly-experimental treatments or to force them into hospice care for palliative treatment in order to lessen the financial burden to others. Obviously, a person cannot have his or her legal rights to further treatment taken without due process and the like (and the outcome of any suspension of rights even with due process is slim to none), but the questions really looks at the connection of financial liability through insurance and the extreme costs of these extreme measures. Discussing the costs of treating a disease like cancer, Gawande wrote, "There are high initial costs as the cancer is treated, and then, if all goes well, these costs taper off. . . . For a patient with a fatal version of the disease, though, the cost curve is U-shaped, rising again toward the end -- to an average of sixty-three thousand dollars during the last six months of life with an incurable breast cancer." Gawande continued, "Our medical system is excellent at trying to stave off death with eight-thousand-dollar-a-month chemotherapy, three-thousand-dollar-a-day intensive care, five-thousand-dollar-an-hour surgery. But, ultimately, death comes, and no one is good at knowing when to stop." Comparatively, hospice care is a drop in the bucket, and its goals of making the patient comfortable are achieved without hospital stays, with few machines, and with limited medications.
Obviously, those who say that there should be a limit on insurance coverage for the terminal patient are arguing with the idea of "why should I pay for your treatment just because you can't give up?" It sounds a little harsh, but given the immense cost of treating patients with terminal cancer, it is also fairly realistic that we all have limited resources. Of course, though, then you get into the murky land of who is going to make the decision that the patient has received enough treatment? That is where Sarah Palin's "death boards" would enter. In addition, if I have paid for you to be treated when you are terminally ill, why should I also not be guaranteed the right for all stops to be pulled out for me? At some point, people are going to feel cheated (much like the anticipated end for social security). In contrast to similar situations, like that of social security, this issue deals with people's dying loved ones. Family members get touchy when it comes to their loved ones' lives.
Tied tightly with the end of treatment is the feeling of "my doctor is sending me away to die in hospice." If you take away a patient's right for treatment until the very end, you take away the right of the patient to be treated by his or her doctor. When that bond is severed, patients often suffer. In addition, the doctor's right to make decisions in the best interest of his or her patient would be eliminated if the patient is terminal and at end-of-life. It seems the doctor would have to tell the patient to go to hospice because he is barred for financial reasons from helping his patient. That is not desirable in the least, and it violates a doctor's autonomy for treatment.
In addition, I think a strong argument against any limitation on treatment of those with end-stage cancers is the need to make medical and scientific progress. Saving someone's life is a legitimate medical goal, and being able to bring a terminal patient back to the side of the living is a worthy goal. We would not be able to approach that goal without having patients who want to push until the end and who are willing to undergo whatever medical treatment in order to stay alive. I think a slippery slope also develops of where to draw the line of someone qualifying to receive expensive therapy and someone not qualifying to receive medical therapy. Theoretically, with the ability to treat end-of-life patients, medicine might get to the point of pushing that line further and further back (much like the definition of a "viable fetus" in the abortion debate). Of course, in that situation, there wouldn't even be a line to begin with.
Getting back to the article, Gawande highlights new trial programs by Aetna where it permits patients who are at end-of-life to enter into hospice care but still receive radical treatments, if wanted. The insurance program took what was a "this OR that" and made it an "AND" program. It had immense success -- the enrollment in hospice increased from 26% to 70%. Costs decreased by a quarter. This program shows the fear that patients, their families, and doctors have about hospice and death. It shows that people are wanting to have the rest and comfort that hospice provides, but they do not want to feel defeated. It is an amazing compromise. Moreover, strangely enough, patients who go to hospice tend to live longer than those who stay in hospitals receiving intensive treatment, and their families find much more peace with the dying process.
Speaking from a personal perspective, I lost my mother in October 2009 from endometrial cancer. She was diagnosed in January 2009, and she was given 6 months to live from February, which was when she had her major surgery. She spent the vast amount of her time from February 2009 to October 2009 in a medical treatment facility. Part of the reason was that she had many complications and needed highly specialized nursing care. However, part of it was that she did not want to quit. I remember her sobbing in her hospital bed that she felt her oncologist was giving up on her when he recommended she think about hospice. She felt he was sending her off to die. She finally agreed to enter a hospice facility under the agreement that she was going there to become stronger to then receive more chemotherapy. While at hospice, she gained strength, and she became much calmer. She was able to have good conversations, get some sleep, and take care of final issues. My mom was very clear that she did not want to die at hospice, and one week before she died, she had progressed to the point where they moved her to a rehabilitation facility where she was to undergo physical therapy. She died there.
Looking at her situation from the policy-perspective, she would have been much more willing to enter the hospice facility if she had been able to go there and still feel like she had the ability to receive treatment while there. Hospice took away all of the hourly doctor visits, the bright lights, and the cold rooms, and it gave her a place that looked a little more like home. I am eternally grateful that we were able to pursue all treatment possible. She had so many complications that included sepsis, perforating her small bowel, blood clotting issues, circulation issues that required amputating her feet, and ostomy issues. It was very relieving to know that we were able to pursue whatever it took to carry out her wishes.
Moving forward, I think that limiting someone's choices is not the answer. Rather, I think expanding the options to include coverage for treatment and hospice promotes the use of hospice, and it will permit patients, families, and doctors to receive some comfort while not having to give up hope.
