I recently read an article entitled “The family said, ‘Do everything.’” It described the case of an elderly patient at the end-stage of life. The article concluded that “If your loved one has reached an end-stage of life, do the right thing. Let them die peacefully.” While I agree with this author’s intent, recent experience has altered my perspective on the “right thing.”
My father died after complications from pancreatic cancer surgery. Mortality from that procedure back then was high, and his postoperative quality of life would be poor. He decided to have surgery anyway. There weren’t intensivists back then. He deteriorated postoperatively, and eventually, there was minimal hope. No one mentioned DNR, goals of care, hospice or palliative care. One morning our phone rang. My father had a cardiac arrest and died. I don’t remember fear. I didn’t cry or pray because I wanted to be tough. My father was a beloved physician. He was 52.
Thirty-nine years later, I’m an intensivist. Pancreatic cancer surgery patients do much better. We have modern ICUs, and often they are staffed by intensivists. We use terms like “bed management,” “turnover” or “ICU patient throughput” like patients were on an assembly line. We have palliative care, hospice, DNR and goals of care discussions. These measures are now commonplace. Hospice is profitable. Palliative care is cost-effective. Bills are pending in Congress to promote palliative care.
I was sure in cases when I “helped” families chose comfort or withdrawal of support that they were “doing the right thing.” Now, I’m not as sure. When families of patients for whom I believed care measures were futile wanted to continue care, I tried to counsel them, but also respected their wishes.
During my career, I’ve heard comments like: “They don’t understand,” “It’s a cultural thing,” or “It’s wasting resources.” These comments bother me much more now. I speak to my families daily. I’ve often hugged, prayed, and cried with families. Sometimes, I’ve cried and prayed for my patients in private. Despite all this, maybe I’m not as compassionate as I should be. In the past week, I’ve been terrified, cried and prayed a lot. The reason I find the above comments more disturbing, my fear, tears, prayers, and doubts about how we intensivists handle death and dying are all because of our kitten Zeus.
That’s correct. It’s about a kitten.
My wife and I adopted Zeus 10 months ago. We had just lost our beloved, wonderful elderly cat, Suki. Zeus had some big “paws” to fill. Zeus spent his first days with us hiding. Occasionally, he would venture out to explore a world that previously had been occupied only by other cats. Eventually, Zeus became braver and very affectionate. He loved being cuddled and constantly made us laugh. We were a happy family. Zeus had filled Suki’s “paws” and made them bigger. On a Thursday I noticed Zeus was sleeping more, not eating, and wouldn’t play. Something was wrong.
That night we discovered Zeus was in kidney failure. By Saturday, despite treatment, he was worse. Our decision was whether to euthanize him or have Zeus dialyzed. The prognosis was extremely poor, but we decided to save his life. At the advanced hospital, they inserted a urinary catheter, a feeding tube, and a dialysis catheter. If, after seven days of dialysis, there was no recovery, we would discontinue and let him die in peace in our arms. Like I wished that all my critical patients could tell me what they wanted me to do, I wished Zeus could tell us what he wanted. My wife and I prayed and didn’t sleep or eat much. We were terrified that Zeus would die. We questioned our decision to treat and cause him pain. We dreaded that “phone call” in the middle of the night.
Zeus’ first day there went well. However, on Sunday night, Zeus had a seizure. On Monday morning and I had my first “goals of care” discussion as a family member. We decided with Zeus’ doctors to continue. On Tuesday Zeus had dialysis, made some urine and looked better. We retired thinking that he had a chance, but early Wednesday morning, ”that dreaded phone call” came. Zeus, our beloved family member, had died, and we couldn’t be with him at the end to say goodbye. He was 17 months old.
Some readers might think that I’m silly — it’s only a cat, but your pets often become like your children. We loved Zeus very much, and the similarities between Zeus’ and my father’s story made Zeus’ loss far more painful. In both cases, the odds of survival were extremely poor, the care even “futile,” but we pressed on. Zeus reminded me that patients’ families cry, pray, don’t sleep, don’t eat, dread the call in the middle of the night, live in fear and experience the emotions we’ve experienced. I’ve learned that not being able to say goodbye is more heartbreaking than I could have imagined. Most importantly, Zeus reminded me that when a family continues care that to us might seem futile, it’s not culture, not getting it, or selfishness. For them even at the “end of life” there’s no “right” or “wrong.” They are trying to save their loved ones’ lives and, like us, they continue because the loss of someone they love so much is too much to bear. I’m beginning to wonder if we’re always taking this into account when we’re recommending “the right thing.”
If Zeus’ brilliant life and tragic death are to have meaning, then I resolve to pray more and think harder about guiding a family towards comfort care or withdrawal of support. I resolve to make every effort to ensure a loved can say goodbye before the end, to be more compassionate, and to walk more closely beside my patients and their families on this most difficult of journeys.
Farewell, Zeus. And thank you,
Safe journey onward, dearest friend.
Gary A. Lindenbaum is a surgical intensivist.
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