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Personal Health
Grace Notes is a series of essays by Sound Medicine contributor Dr. Larry Cripe, an oncologist specializing in palliative care at Indiana University Hospital in Indianapolis. Dr. Cripe reflects on how we might make the experience of dying more livable and meaningful, before, during and after a person passes.

The Shadow of Death Is Cast Wider When We Refuse To Speak Of It

shadow of a dune in Death Valley
By Brocken Inaglory (Own work) [GFDL (http://www.gnu.org/copyleft/fdl.html) or CC BY-SA 4.0-3.0-2.5-2.0-1.0 (http://creativecommons.org/licenses/by-sa/4.0-3.0-2.5-2.0-1.0)], via Wikimedia Commons
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This Grace Notes essay originally aired on August 30, 2009.

Moments before I said goodbye to her family, I had gripped the hand of her brother-in-law as her pastor finished the prayer that he began with the Twenty-Third Psalm. He offered up his thanks for the miracle of her life, for the doctors and nurses who cared for her during her several-month struggle with acute leukemia, and for the steadfast love of her family.

Then I watched as the family watched the nurse, who administered medications to assure she would experience no distress and the respiratory therapist, who prepared to remove the tube that connected her lungs to the mechanical ventilator. Both were gentle and respectful. Within the hour she died and her family left with her belongings. 

It may strike you as callous that I thought about the health care reform debate at such a profound moment, but I did. I am deeply troubled by the conservative distortion of the Living Will provision of the Senate's proposal into "death panels." I fear we have lost, in their rhetoric, the opportunity for a life-affirming national conversation on an essential question: how will the ways in which we die impact the lives of our loved ones? 

In the thirteen days since she had been referred to me to discuss further treatment options, there were no easy decisions. She did not want to die. Yet she almost certainly would. She did not want palliative care because it offered no chance of the remission she hoped for. She was willing to accept significant risks, if reasonable. I was apprehensive of the burden and distress of further active treatment. I did not want her to die receiving futile care. In the end she agreed to participate in a clinical trial. However, a series of complications prevented the planned treatment. The last night she lived, I spoke with her and her family. I acknowledged we could introduce life support, if further complications occurred, but I felt it would be futile. She seemed to agree. We planned to meet the next morning early to reach a final decision. But that would prove too late. At 3 a.m. she bled into her brain and was intubated.

As I walked out of the medical intensive care unit I wondered what the young nurse who cared for her as she died feels about the health care debate. Is he concerned with limiting appropriate care? I believe that it's more likely that he would share story after story of people who lingered with untold and unacknowledged suffering for them and their family because conversations about care were avoided or incomplete. What would he say about my patient? I hope he understands that I profoundly regret that our first real conversation about dying occurred too late to prevent her from enduring this in the final hours of her life. 

Americans are stuck, I believe, in an overly optimistic and unrealistic sense of what we can accomplish with medical technology. We maintain the misconception that at critical points in an illness, "choice" is simply selecting between options for active treatment ... rather than the need for careful and deliberate conversations about values, about cost--financial, emotional, spiritual, and existential. For many of us there will be a trade-off between a death, perhaps earlier, with comfort and family presence as the stated goal and aggressive medical intervention.

The Pastor's recitation of the Twenty-Third Psalm echoed in my head as I walked away: "Even though I walk through the valley of the shadow of death, I will fear no evil." The shadow of death is cast wider when we refuse to speak of it. The conservative distortion of the debate reflects their lack of faith in the American people. Do we truly have so little trust in ourselves that we are afraid to create a system to foster honest discussions about the harm inherent in a heedless insistence on no decisions to limit care? Meaningful conversations about what is appropriate medical care near the end of life between a physician and a person with a life-limiting illness will only occur if we all expect such conversations. We are the system. And I have more faith in us.