The Art of Dying: The Delicate Balance Between Curative and Palliative Care
First impressions often guide our thinking and decision-making in medicine. As physicians, we think in scripts based on previous experiences and expertise. In the following essay, I ask you to reflect on the story of my 95-year-old father-in-law, who was living a wonderful quality of life in a Columbus, Ohio, nursing home the week he became seriously ill. He had just cast his absentee ballot in the Ohio primaries, sent his tax information to his accountant, and was up-to-date with fellow residents and family members on the most recent world news and Ohio State basketball. Parenthetically, he had previously survived bowel resections and septic episodes numerous times in the past ten years, all to the amazement of the healthcare team and his family. As I relate how his last number of days evolved, I hope to convey factually and emotionally that what occurred to him and our family is a story not traditionally found in textbooks and the curricula of medical students and residents. In addition, complex and difficult decisions around curative versus palliative care that families are forced to confront during a highly emotional time are not as clear-cut as physicians would like to believe.
With a long history of Crohn’s disease, intermittent congestive heart failure, and rheumatoid arthritis requiring long-term steroids, my father-in-law suddenly became ill with an upper respiratory infection and laryngitis, followed by fever, intractable groin pain, peripheral edema, and leukocytosis. His caring internist, taking no chances, admitted him to a local hospital, where on exam he was noted to have necrotizing fasciitis in the groin and perirectal area.
A young and aggressive colorectal surgeon suggested a debridement to stop the ongoing necrosis. As he stated, “Doing nothing would result in a very difficult death, and surgery might be helpful to ongoing pain relief.” The family (two daughters, one son, and spouses) struggled with this acute decision to do nothing or to do a surgical debridement. The contract with the surgeon was that if the necrosis was wider-spread than anticipated, he would cease operating, with the postoperative goal to make my father-in-law comfortable. With little time to think, the family opted for limited surgery.
So, up to this point, you might be logically thinking that this man has lived a full life well beyond expectations, considering his underlying medical problems. In addition, he might represent the stereotype of the geriatric patient in whom some would suggest that there be limited resources for what appeared to be end-of-life care. Perhaps you’re thinking the best plan is to make him comfortable and spare him further intervention.
Well, the story continues. The surgery involved a widespread debridement around his groin and perirectal area, and the application of a vacuum to enhance wound healing. The surgeon estimated that he would be on a ventilator for 48-72 hours with a central line, and the recovery—if he survived the immediate postop period—would be 4-6 weeks in a rehabilitation environment. He survived the surgery with no need for pressors or other life-enhancing medications.
The next two days our family arrived at crossroads #2, as it appeared he would also survive the immediate postoperative period. Confused and not knowing if he had a chance for a quality-of-life survival, we sought help in our decision-making at this point from his long-time, caring internist and an ostomy/wound care nurse, who has some experience with like kinds of problems. My father-in-law was not alert enough to decide what he wanted for himself. His internist was optimistic about effecting adequate pain control but felt that he would need further significant interventions, including a diverting colostomy. The wound control nurse agreed and estimated the healing process to be 4-6 months (not weeks) in a 50-75-year-old patient.
Taking these assessments into account, the family met with the Palliative Care Team to discuss concerns and options. By postoperative day 3, my father-in-law’s ventilator was discontinued. He was vacillating between being awake but not alert. He was unable to fully comprehend the enormity of his illness and extent of his long-term rehab. Realizing the importance of quality of life to him, we elected to admit him to the palliative care floor, have the wound vacuum removed, antibiotics stopped, and the central line pulled. His vital signs were reduced to one measurement/day without monitors.
After three-plus days of fear, anxiety, uncertainty and self-assessing about whether we were doing the “right” thing, we experienced an amazing transformation in this new environment: moving from high-tech and aggressive care to a more peaceful setting. It was in this environment that the family’s decision-making appeared more certain, and that closure to a wonderful life of the patriarch of our family was evolving.
Over the next four days, my father-in-law presented us with a gift that will linger forever. He taught us all how to die with dignity, how to be in control of his dying as much as his vital functions would allow, and how to spend quality precious moments with family that meant everything to him. During his lucid interludes he was able to say his goodbyes to each family member in person (except for the great-grandchildren) in his own way, giving them his unconditional love and advice. He did this one-on-one and by telephone. He conveyed his love and feelings to his great-grandchildren. He participated in the Sabbath prayers over wine and bread, and recited the ancient Hebrew words of the Shema, as a commitment to God and his religion. (He asked me if I was keeping a diary of events that had occurred for future reference!)
His death was truly a remarkable and unique event for each of us. We learned so much from him and matured in the process, watching him evolve from a hopeful situation to an end-of-life one. Prospectively, the fine line between hopeful and end of life was blurred, but it became clearer with time. Whereas he was unable to participate in the decision-making, the family pooled its resources and wisdom, along with the help of the hospital staff and his physicians, to lead him down the “right” road, painful to us as it was. We learned as a family that the “right” road was the one that seemed the best choice for my father-in-law at the given moment and based on his previous wishes.
One could never learn this end-of-life care that we experienced from textbooks and/or from lectures. You can only get this dealing with one patient and one family at a time, each situation with its own specifics and set of characters. As a committed medical educator and academician, I believe that there is a clear message for physicians: Make no assumptions, be open in your thinking, and make certain that you know the patient and family before formulating opinions. If there is a lesson to be learned, it is to understand what patient/family has a disease, not what disease the patient/family has.
