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Recently, an insight penetrated the fog of a busy firehouse shift. My epiphany, after 23 years in emergency response? Death is undefeated.
I'm not being glib. I have seen hundreds of people die, witnessed far too many bad deaths, and watched stricken families flail against the inevitable. We can break the denial and incomprehension surrounding death with a simple but challenging fix: Talk about it.
What is a "bad death"? My crew responded to an older woman who broke her hip. She was tiny and stoic; the pain was significant. We had to immobilize and carry her through the house, pivoting around furniture and down stairs, then secure her to the stretcher so the paramedics could transport her to the emergency department. Her injury led to a carousel of hospitalizations and steady deterioration: opportunistic infections, cardiac and respiratory problems, physical and mental debility. We responded weeks later to her home for generalized weakness, infections, chest pain — plus her tender hip. Another emergency transport. The family's perspective was, "She broke her hip — why are they talking about her lungs and her heart? When can she come home for good?"
The family did not understand that this cascade of accumulating issues would be fatal. Many interventions were attempted — costly, brutal on the body, largely futile. No one was explicit with either the family or the patient over the three months from fall to death. She died in a bleak room, under fluorescent lights, on a much-used institutional bed. Her family's grief was compounded by guilt and confusion. They felt powerless and ashamed they'd let her down.
Another: We responded to a sweet nonagenarian with heart failure, which meant his heart could not pump effectively, causing persistent respiratory issues and fluid buildup in his lungs and limbs. We trundled him from the armchair where he spent most of his time through the cluttered house and out to the ambulance. No doctor made explicit to the family that draining the fluid and easing his symptoms was a losing gambit — that he was running out of time. We responded a few more times, always the same, him struggling for breath in that armchair, wheezing but pleasant. On the final call he was in severe distress, gasping and gaping. He told his family he was tired of it all: no more transports to the hospital, no more procedures. I'm done, he croaked. Let me go.
His adult children were distraught and panicked. They had not completed any advanced directives, had not begun hospice or palliative care. The man was 90 yet they had no plan. The paramedics were legally unable to provide any sedatives to help him die peacefully. He was drowning in his own secretions. It would be hours, not minutes, of agony. We were all helpless.
Even with a terminal diagnosis, too many families hold out blind hope. They cannot or will not accept that terminal means unwinnable. Too many medical providers fail to make explicit the realities. When no conversation or planning has occurred on advance directives, the results are distressing, exorbitantly costly, often futile treatments that destroy quality of life — and then compulsory post-death attempts to revive the patient. These are bad deaths.
Many hospitals and clinics now incorporate mental health screenings into their admission assessment, which normalize conversation about depression, anxiety and mental health. Why not do the same with dying? At every medical appointment for someone over 60, say, let's have a standard questionnaire: What is important to you when you think about "being alive": walking? talking? feeding yourself? breathing on your own? Do your family members know your preferences? Do you have a DNR/DNI? Would you like information on what they mean and how to complete them?
This would begin a process of practical and existential consideration for individuals and families. Talking about dying does not summon the reaper; making plans for the inevitable is not giving up. There are several critical end-of-life conversations to be had: the process of decline and bodily failure, comfort-care palliative measures, dying as the end point, CPR or intubation. Hospice and palliative care remain underutilized in the medical model. Our fear of death and reluctance to talk about its approach can cause more unintended suffering than death itself.
A good death: A friend's 75-year-old mother had terminal cancer. The doctor was blunt: The patient had perhaps 12 months to live. My friend helped her mother fine-tune her estate and burial plans; arrangements were made for the end of her life; hospice took over with beds, meds and advice, and post-mortem details. When she died, no 911 calls were made. Instead of sirens and bills and glaring hospital lights, grief and dignity abounded. No one "quit" on Mom. The family let her go with love.
The brutal corollary to that? Procrastinated or avoided conversations about advanced directives ensure that total strangers — EMS workers in the home, emergency room or care facility — will be forced to brutalize the unsavable body when it fails. The number of times I have knelt on a hard floor and pulverized a dead person's chest — someone who should have been allowed the peace of a final passage — is shocking.
Families offer the same fraught refrains: We didn't want to upset him with talk of death. We didn't want her to think we'd given up. We meant to — we were waiting for a good time.
CPR on an old person or one ravaged by cancer does bloody violence to the body. It is horrible for the family to witness, crappy to perpetrate as a responder. It does the dead no favors and it haunts all of us who remain.
If we break the silence and improve our understanding, we can provide better comfort care and improve the dying person's time with us. Everyone should have an advanced directive, and know why.
Please, let's make peace with death and talk about dying. We will live more fully if we do.
Jeremy Norton is a firefighter/EMT with the Minneapolis Fire Department. He is the author of the upcoming memoir "Trauma Sponges: Dispatches from the Scarred Heart of Emergency Response."
