Abstract
Dear Editor:
When I was 15 years old, I was diagnosed with cancer. I endured two years of treatment and a bone marrow transplant—which came with a 32% chance of survival. I can attest that the time of a medical emergency is not the time to make decisions about your health care. “Advance Directives/Care Planning: Clear, Simple, and Wrong” has some opposing thoughts that I would like to address. 1 Although you state your opinion well, the only portion I could find some agreement with is “…goal concordant care will not be achieved until health care is not overwhelmingly driven by the profit motive and financial incentives do not influence decision making so strongly.” I can see a point where some institutions (or providers) may be more concerned with profit and less concerned with the patient's decisions. There is research to show that lower income or minority patients receive more life-sustaining treatments. 2 Thus, providing the institution with more financial gain and a poor quality of death for the patient. 3 Yet another reason there is more research to be done, as well as advocacy with our politicians, on behalf of our patients who need a voice to help stop institutions from these practices. We know this is an issue, let us continue to do the work to correct this health disparity.
However, I completely disagree with Advance Care Planning (ACP) decisions being made in the moment of a medical emergency. Although I do not have the experience of a physician role in these situations, I can speak to it from a nursing standpoint with my patients, a personal standpoint, as well as dealing with death and the dying process with family members. In each of these situations, my experience has been that this is not the time to make decisions. These conversations should be ongoing as illness trajectory does change over time. I had cancer and no kids at age 16 and at that point, after aggressive chemo, radiation, and bone marrow transplant, I would have said no to any more treatment. It was enough and the symptoms were unbearable to go through again. Now that I am on the other side with small children and a family of my own, I feel I have more fight in me and I would go back and change that decision to continue all treatments.
My grandmother, 84 years old, had numerous conversations with me before she became ill. My certification as an ACP Facilitator with Respecting Choices and my experience having ACP conversations with patients and families prepared me for these conversations. I knew the steps to take to help her “die with dignity” when she had her medical crisis and she could not speak for herself. To this day, I feel confident in the way I was able to be sure she got the care she would have wanted for herself. I was not overcome with emotion; I felt prepared and honored to step up and speak for her. All of this is why ACP research is important.
Your commentary was provocative, but only encouraged me to continue the research to find effective ways to meet the needs of families, so ACP can become the norm for all families.