I know the subject I’m going to write about is grim and one of the reasons it is so grim is that until recently it is almost never talked about. One of the exceptions is Atul Gawande’s forceful essay, "Letting Go," in the August 2nd New Yorker. And in the Sunday Times Magazine a few weeks ago, Katy Butler wrote a heartbreaking account of what dementia did to her father and how the medical profession did nothing but prolong the agony of his life.
Again, in the Times last Tuesday, Roni Caryn Rabin described the dilemma faced by family members and caretakers of an Alzheimer’s patient near the end of life when faced with the choice of whether to provide nourishment or withholding it. Her daughter said, “I had this realization—wow—that no matter what we did, Mom was never going to get better. We were just prolonging the inevitable, and potentially causing more suffering."
With the rising costs and growing arsenal of medical interventions and the rapidly increasing number of elderly individuals, end-of-life care has become a critical issue. Butler reports almost a third of Americans over 85 have dementia. And Gawande writes that “Twenty-five percent of all Medicare spending is for the five percent of patients who are 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.” The days of a quick catastrophic illness leading to death at a comparatively early old-age are over. Today most individuals die only “after long medical struggle with an incurable condition”
How should medical professionals respond when they can’t save your life? Almost all doctors are reluctant to come right out and tell you this. And yet all the evidence presented in the foregoing accounts indicates that medical interventions for people in the last stage of their life cause more harm and suffering than doing nothing. Gawande reports: “…terminally ill cancer patients who were put on a mechanical ventilator, given electrical defibrillation or chest compressions, or admitted, near death, to intensive care had substantially worse quality of life in their last week than those who received no such interventions.”
Gawande also treats at some length the effects of hospice care for critically ill patients and says there is no difference in survival time between hospice and non-hospice individuals with breast cancer, prostate cancer, and colon cancer. Moreover, in a striking statement he says,“…hospice care seemed to extend survival for some patients; those with pancreatic cancer gained an average of three weeks, those with lung cancer gained six weeks, and those with congestive heart failure gained three months. The lesson was almost Zen: you live longer only when you stop trying to live longer.”
What is the solution to this growing, nationwide dilemma? Gawande proposes a very simple one: It is essential for individuals to have a serious discussion with their physicians about how they want to spend their final days. An Advance Directive given to your doctor may not cover all the bases. Absent a comprehensive statement, the default choice for doctors is do all they can to save their patient’s life.
Thus, end-of life discussions with physicians and family members need to be detailed and explicit. What kind of care do you want under the following conditions?
• Your mental condition deteriorates to the point that you are unable to communicate verbally or in written form in a fully coherent fashion
• Your physical health becomes uncontrollably and severely painful and you loose control of your bodily processes
• You develop an incurable disease or illness, which is clearly terminal and for which there is no known cure.
To bolster the importance of this discussion Gawande cites some impressive studies: Two-thirds of the individuals in a Coping with Cancer project who did NOT have this kind of discussion with their doctors suffered far more than the one-third who did. He cites the city of La Crosse, Wisconsin that has unusually low end-of-life hospital costs and attributes this to the fact that 85% have had end-of-life discussions with their physicians.
He concludes there are no rules for conducting a discussion with people about their terminal illness wishes except trying to determine what is most important to them. These “Breakpoint Discussions” as puts it are “… the conversation that we all need to have when the chemotherapy stops working, when we start needing oxygen at home, when we face high risk surgery, when the liver failure keeps progression, when we become unable to dress ourselves.”