A Good Death

When envisioning our death, many of us imagine our family around us at home, surrounded by love. Our mortality and our death loom in our minds even, or maybe especially, if we are not someone who talks easily about such things. They are specters, often instilled with fear and anxiety, and therefore something from which we shy away. We all want a “good death,” but I have come to see that it comes in many forms. We always consider patients as whole people, their family and support network a large aspect of who they are. Most physicians share a similar conception of a “good death” and consider death in the ICU or after futile CPR failures. This contributes to the moral distress I often encounter when ward teams consult palliative care: A patient doesn’t “get” what is coming, but the team does, and they want to avoid it. I often hear “I don’t want to code this patient,” or “they shouldn’t be a full code.” I’ve felt that myself at times. But I have sat with many families and patients at various stages of processing, accepting, and grieving an impending death, that and I have come to see those cases differently and have found a peace in letting go of the outcome, of how and where a death occurs, trusting that the process will play out how it needs to, for the best possible conclusion for those intimately involved.

Dan died in the ICU, attended by a nurse he’d met only a few hours earlier, his wife and daughters at his bedside, on the day he was supposed to discharge home. He’d been rushed there in the middle of the night as he vomited up copious amounts of bright red blood and his blood pressure plummeted. He agreed to transfer to the ICU and let his nurse call in his family, but before he was deemed too unstable for an EGD, he had decided he was tired and just wanted to be “done with it all.” The day before, he had looked forward to getting home on his 7-year-old granddaughter’s last day of school to spend his last summer with her and his other grandchildren after being diagnosed with metastatic esophageal cancer. I had the rare but sacred opportunity to speak to him on the verge of death, still coherent with a systolic blood pressure in the 60s. He was clear about wanting a quick death, for us to remove the final tether to this world, his vasopressors. I tried to convey a sense of peace for his journey, gratitude for allowing me into his final days on earth, and an honoring of who he was and his autonomy and dignity into a hand squeeze and a moment of eye contact, then left his family for his final moments. I thanked the universe that they were not in an ambulance on the way to the ER and that he hadn’t vomited blood before a terrified granddaughter.

Jerry had spent weeks in the hospital, increasingly unable to tolerate dialysis sessions even than he had been for months before being admitted. Tied down at the wrists, his blood was forced through the dialysis machine for hours a week until his agitation broke through restraints and medications and he was no longer safe to dialyze at all without ICU-level sedation. His wife seemed too overwhelmed by his medical complexities to make decisions on his behalf. Every conversation circled back to a magical hope and brewing grief expressed as a surety that if she signed him out AMA and dropped him off at dialysis, everything would be fine again. How could anyone blame her when at times he calmed down to his old self, happily strumming his guitar or calling her in the morning to say he wanted to come home? When she finally saw that without dialysis his time was very short, her plan to take him home and care for him on hospice by herself seemed as shaky as her earlier reasoning. Did she understand what caring for a bedbound adult entailed even if he wasn’t agitated? She wanted to honor his wish to be home as soon as possible and insisted we prepare for his discharge in less than 24 hours. But the insulin he’d gotten for hyperkalemia in the absence of functioning kidneys worked too well and he became hypoglycemic. When his wife saw him stabilized in the ICU yelling for us to “let me die” and “stop doing this,” she didn’t need a goals of care conversation to convince her that he was truly done with dialysis. She requested we stop all interventions and make him comfortable, with the hope she could bring him home with hospice. He died the next day in the ICU.

Cheryl celebrated her 45th birthday on a ventilator. In fact, it was the date of her planned terminal extubation. Miraculously, soon after extubation she was alert enough to reverse her code status. Though slightly delirious at times, she moved out to the med-surg floor and spent some time visiting with her three teenaged children over the next week. Then, she declined rapidly. Her small bowel obstruction would not clear, tied as it was to her peritoneal metastases. Within three days, after a day of “rallying” to visit with her large family, she was actively dying, comfortable, with her mother at her side. She died the day before her son’s birthday, a macabre gift sparing him the double anniversary for the rest of his life.

None of them died the “good death” we see in the media or think of for ourselves. All were in noisy hospitals, their deaths barely noticed by anyone other than their loved ones by the bedside. But all were comfortable, their deaths anticipated at least enough to have family and friends with them. And a death is experienced and remembered by those who are left behind. A good death can be one that spares a sole caregiver from the stresses of caregiving alone. A good death can avoid a traumatic memory for a cherished grandchild. A good death can be one that is quick, sparing a spouse watching her husband beg for release. A good death can be a young mother taking advantage of every treatment offered, no matter how futile, to show her children she wouldn’t abandon them without a fight, leaving them with a legacy, if not a parent. Even a futile code can be a good death if it honors a patient’s desire to utilize every possibility of extending life, or a bereaved family’s need to honor an incapacitated patient’s stated wishes or feel they didn’t prematurely “give up.” If we as providers can let go of our conception of how death should go, and that certain patients “should not” be coded, or “should” understand their poor prognosis and stop unhelpful treatments; if we can understand death as the end to an individual life and therefore an event that should reflect that person’s character, values, and roles, we may feel less moral distress when it doesn’t follow the script of a “good death.” We may even be able to console ourselves that we helped facilitate, intentionally or not, the best death possible.