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Personal Stories of Advance Care Planning
It’s been three years since my husband, Bill, died of pneumonia. Bill had been diagnosed with terminal cancer in October 2008 and contracted pneumonia in February 2011. He had been admitted to the local hospital’s intensive care unit, placed in a medical coma, and put on life support to give his lungs time to heal. Or so we hoped.
At the time of Bill’s death in February 2011, I was not aware of Light the Legacy (St. Cloud, Minnesota); Honoring Choices Minnesota (Minneapolis, Minnesota); or Respecting Choices (La Crosse, Wisconsin). As I look back at my experience during Bill’s last days, I realize we could have been a blind case study to show that their approaches and processes work.
I never thought much about needing a formal health care directive until Bill was diagnosed with terminal cancer. I learned in Bill’s last days what a gift a health care directive is and how critical those conversations about quality of life and end of life can be as I navigated through the chaos of that medical event.
Having been through that medical event, I can’t emphasize enough how crucial it is have those conversations about what one’s health care directive means before the moment of crisis or loss of communication.
It wasn’t just one conversation that guided me. Four different conversations ultimately became the foundation that gave me peace of mind, allowing me to implement Bill’s wishes as documented in his health care directive.
The first key conversation had been with our attorney after we completed our health care directive. We talked about “even though modern medicine can, doesn’t always mean modern medicine should.” We talked further about the impact of life support, especially on the terminally ill, and how sometimes life support no longer supports one’s life but instead prolongs one’s death. I would later call that “fuzzy” transition between life and death “The Gray Zone.”
The second key conversation Bill had with me. It was more personal and painful. It was the conversation I didn’t want to have with him about his definition of quality of life and end of life. We had it anyway. He took great pains to ensure I understood his definitions of both. Bill was explicit about what he needed me, as his health care agent, to tell the medical team if he were unable speak for himself and if treatments no longer supported his quality of life.
The third conversation was the running dialogue with the medical team while Bill was in intensive care on life support. The medical team I relied on included Bill’s oncologist (a much-needed familiar face) and the intensive care doctors, nurses, and staff. We formed a partnership with frequent and transparent communication. All of us focused on maintaining Bill’s quality of life. We all knew the next steps when it became clear that treatment options no longer supported Bill’s quality of life but were prolonging his death.
The fourth conversation was one I ended up having with myself while Bill was on life support. While I intellectually understood what being Bill’s health care agent meant, I had failed to realize I would be “wearing two hats”: one as Bill’s wife and the second as Bill’s health care agent. I was unprepared for the internal, highly emotional conflict I was experiencing while simultaneously wearing both hats. As Bill’s wife, I wanted him to live as long as possible, even if that left Bill an invalid. As Bill’s health care agent, I needed to be willing to remove life support if and when the medical data suggested Bill’s definition of quality of life was no longer being met. As hard as it was, I needed to remember this was about Bill, not me. I needed to respect and honor Bill’s choices and implement his wishes.
Because of the guidance provided in Bill’s health care directive and the gift of those conversations with Bill while we were still able to talk, it was emotionally painful, but I was able to honor Bill’s wishes, remove life support, and let him go.
Bill had a good life. And because of his health care directive, our conversations regarding quality of life and end of life, and the partnership with the medical team, Bill had a good death.
Copyright 2014 Deborah Day Laxson. All rights reserved.
Mary and I have been big supporters of end of life discussion and began this conversation with our parents long before they became ill. My mother was a perfect example. My mother was receptive before her dementia took over. We had a great talk with the help of a social worker from ANW home care. I was able to explain many terms in her language with my health care background. She asked very good questions and my brother and I were happy with her response to all issues. It looked as though everything was in place.
I come from a very large family and, although we made efforts to inform my siblings of my mother’s wishes, it was hard to gauge their understanding. After surgery to repair a broken hip, my mother developed a blood clot. She was on a post-surgical floor at Mercy Hospital and it was in the middle of the night. My sister called me and informed me that my mother was very short of breath. I assumed the worst and headed for Mercy Hospital. In the meantime, the nursing staff, sensing my sister’s panic, transferred my mother to ICU and began resuscitation procedures ignoring the DNR/DNI band on her wrist. She lay there with her chest exposed, ready for CPR and other procedures. When I arrived I asked what they were doing and told them to stop immediately. I looked at my mother’s face and saw her confusion and then asked the priest, who was standing in the hallway, to come and be with her. My mother died within a few minutes according to her wishes.
The point is that, if I had not been there, she may have been put through many resuscitation procedures that she had not wanted. Because of my concern, Mercy Hospital is looking at its policies in regard to my mother’s situation. The bottom line for me was that, even with the proper paper work in place, things can happen that you may not want. My family and I have talked about this often since my mother died. We are all more aware of the need to be with your loved one as often as you can during hospitalizations. We also have spent a lot of time discussing our own end of life wants.[divider]
Advance Care Planning Case Studies
Without an advance care directive
53 year old man with cancer metastatic to the brain hospitalized three and a half weeks with severe sepsis related to aspiration pneumonia, then discharged to nursing home, was admitted to the hospital 2 months later with a large decubitus ulcer with underlying bone infection and sepsis. In spite of the information from the doctors that further aggressive cares would not be beneficial, the patient’s wife stated she “continues to have hope that full supportive measures would prolong his life in a meaningful way”. In subsequent days, he had daily blood draws and required multiple attempts to replace his IV. He underwent placement of a feeding tube in his stomach. He experienced repeated episodes of aspiration, and developed a painful heel ulcer. He was not cognizant or able to communicate meaningfully. At his death 25 days after admission, he weighed 113 pounds, his doctor documented the day prior to death: “He is very cachectic and I can almost encircle his thigh with my hand.”
With an advance care directive
78 year old man with advanced COPD and severe aortic valve stenosis was admitted to the hospital with severe shortness of breath. His health had been declining over the past 2-3 years to the point that he was unable to hunt or fish any longer. He and his wife had moved from a lake home to an apartment due to his difficulty with maintaining the home. He was treated initially with a ventilator for two days, appeared to be improving and was then transferred to the medical floor. His condition deteriorated and he was returned to ICU with respiratory distress. He declined resumption of the ventilator, but because he was confused, the decision was given to his wife. He had an advance directive in place which stated: “If I had a reasonable chance of recovery, and were temporarily unable to decide or speak for myself, I would want those medical treatments geared toward facilitating my recovery while preserving my self-determination, comfort and dignity. However, if it becomes evident that no reasonable chance of recovery remains, I would want all medical treatments of any kind to be discontinued.” His wife had discussed the Advance Directive with him previously and understood his wishes. After confirmation of very poor prognosis for recovery with his doctors, and discussion with their daughter and son-in-law, they all agreed that his wishes should be honored and that only treatments intended for his comfort should be continued. He died peacefully the following day, surrounded by his loved ones.