As written for Cancer Family Care, Cincinnati, Oh, January newsletter
Defining Progress
January 9, 2007
Recently, Stephan Keirnan, author of Last Rights: Rescuing the End of Life from the Medical Profession, was interviewed by Terry Gross of NPR. Early in the interview, Stephen spoke from personal experience. Steve’s father suffered a brain aneurysm at age 65. His mother helplessly stood by as a feeding tube was inserted in her husband’s throat, causing a dry tongue and raw cracked lips. Distraught over his physical discomfort, she persuaded the doctor to try something else. The doctor responded by performing a tracheotomy, which involved making a tiny slit in his throat for the feeding tube to run. “At the time,” Steve recounted, “we considered this progress.”
While listening to that interview, I heard disappointment in the author’s voice and knew it all too well. My husband, Devin, battled leukemia for three years. During his illness and subsequent death, there were many things I’d have done differently.
I would have let his mother, Judy, care for him more. Before Devin’s first treatment, I promised his mother, “You take of my son and I’ll take care of yours.” I wrongly assumed Devin would live and there would be plenty of moments for mother and son, both sets, to share in each other’s lives. As Devin’s wife, I knew to leave him alone when required. As a mother, letting our children be is not in our nature. But I still regret the time he and his mother missed. Devin was Judy’s son for forty years versus my husband of three years. Certainly she and Devin had more ground to cover than he and I ever would.
I also would have stepped in earlier in his process of dying. Six months before his death, we received word that Devin’s stem cell transplant, performed at Seattle Hutchinson Cancer Research Center, had failed. Over my objections, Devin’s first reaction was to call Seattle’s long-term follow-up team to ask about recommended next steps. LTFU suggested a process that was in its infancy stages and we would have once again uprooted our family, as we had done nine months prior, for a long shot at a cure. In the end, Devin was denied entrance in this clinical program – because there were no next steps.
I wish we could have had that talk –spoken in the tone of a county sheriff with a long southern drawl, “Whoa boy, you need to start slowing down.” Devin didn’t need to start dying but he and I should have had more discussions around how. Two months prior to his death, Devin’s leukemia had infiltrated his spine to such a great extent that he could no longer lie in bed without pain. During his final hospitalization, upon making the hospice decision, it was also suggested that we have Devin fitted for a back brace. I helplessly stood by and watched him grit his teeth, while three grown men – three - took turns shifting him around on the sheet in various positions so they could take the proper measurements and create a brace. Ironically, the brace would go unused.
In the end, I would have chosen to lie down beside Devin and let everyone else do the work. But I was afraid that giving in to that notion meant giving up. Perhaps then, I could have taken more time to help shape his last days, months and not always looked upon him as a patient. I would have talked more about my fear of his death, and of death in general. I would have nagged less, but I equated nagging to love. In so many ways, I gave care not love. In the end, Devin died at home, in the comfort of the office where he once felt energized, and when he let go, I was relieved to once again see the person I was meant to love.
Six years later, I remarried. My new spouse, Mark, is a doctor. His first wife Susan died of lung cancer, though not a smoker. When asked to consider what he would have done differently, Mark responded, “In my heart I feel I benefited greatly by knowing pretty clearly the medical situation, and that freed me somewhat to do what I thought was best for Susan without feeling bad that maybe the cure was just one last desperate treatment away. As you know, I feel strongly that health care professionals are ill-equipped to STOP treatments, to give up. It is just not in our nature, or the training. We need a better system, enhance hospice perhaps, to guide people to a softer landing when it comes to the end of life.”
It is not in a doctor’s nature to stop, nor was it in mine. I had been Devin’s first line of defense in securing blood products for transfusions, scrounging for soap and towels inpatient and even buying his new Merrell mocs, when they were still an unknown brand. Though a writer and computer programmer, I too felt ill-equipped in predicting when the clock would actually cease. No doctor, no human will ever be.
Stephan Keirnan could not have written his book without examining his own stories. If those who have been there continue share their views on "what I would have done differently" with honesty and candor, it will make it easier for others to say stop when the time is right.
Annette Wick is a local author whose memoir I’ll Be in the Car: One Woman’s Story of Love, Loss and Reclaiming Life from Three Arch Press is now available through bookstores or online at
www.Illbeinthecar.com. Her new husband, Mark Manley, M.D., is an anesthesiologist with Anesthesia Associates of Cincinnati.
