Consider these two end-of-life scenarios
One family faced death with no idea of treatment wishes. The other had a plan.
By EILEEN WEBER
September 11, 2009
Minneapolis Star Tribune
As a nurse who has worked mostly in critical-care settings, I have been struck by the fear-mongering about "death panels" and "pulling Granny's plug."
I remember the night in a busy ER when a young woman in cardiac arrest, dying of cancer, was brought to us, accompanied by lights and sirens. There had been no advance discussion of her final days, no clarification of her wishes and no outline of treatment goals to fulfill those wishes. I still ache remembering her husband's lost expression and disbelief. Per routine, the ambulance crew had called ahead to us with her name and medical record number, giving us moments to check her chart. While our full cardiac-arrest team continued the resuscitation that the medics had started, the doctor stood at the foot of her stretcher with her dazed husband quietly explaining her deadly situation -- her less-than-slim chance of biological survival, let alone of ever having another human interaction. Resuscitation continued to fail, and the husband agreed to let her go. There was no saying goodbye to one another, no shared forgiveness, no discussion and fulfillment of final wishes. Sudden death of a loved one is brutally hard on those left behind, but when death is foreseeable and yet uninformed, undiscussed and uncounseled, I believe it is medical malpractice as much as taking someone to surgery without informed consent.
In a coronary-care unit where I worked, we once had a woman with cardiac amyloidosis, sometimes called "stiff heart syndrome." Her heart was losing its ability to pump oxygenated blood to the rest of her body. When the pump fails, the rest of the body does, too. Her primary doctor was an aloof sort with a bit of old-fashioned medical elitism. But this woman and her husband had a profound, prayerful faith and devotion to each other that touched all of us, even him. One of our night nurses was also deeply religious, and as unusual as it was for a night nurse to be a patient's primary nurse, everyone agreed when she asked to be the nurse in charge of writing this woman's care plan, coordinating care, monitoring the patient's progress or lack thereof, working and praying with the family, and caring for the patient every night.
There were many discussions with family, patient, nurses and physicians. What was the likely course of this cruel disease? How long did she have? What would the end be like? Would there be pain? Would she feel like she was drowning? Would she be alert? How could we increase her comfort? What about eating and drinking, intravenous fluid and feeding tubes? If death was inevitable, did we want to prolong the agony with CPR, more needles and tubes and a ventilator that would prevent her from talking to and praying with her loved ones? Even the Catholic Church says such extraordinary measures are unnecessary.
Information, discussion, presence and faith in a power greater than modern medicine brought this couple peace. In a bit of unconventional rule-bending, the patient's doctor convinced the hospital to let her stay with us for her few remaining days despite the plan to replace our usual death-defying measures with comfort care. Everyone understood that if another critical patient needed the bed, we would have to move her, but that was different than moving her just because the rules said so.
Which woman was abandoned? Was it the one whose doctor did what the factless "death panel" fear-mongerers rant and rail against, counseling a patient about disease and death and customizing care to fulfill final wishes as her condition deteriorated? Or was it the one whose doctor apparently was more in line with the wishes of the ranters who seem to believe that preparing for death means you are bringing it on? When third-party payers pressure doctors to spend less time with patients instead of more, is it really in a patient's best interest to deny her doctor payment for the time to prepare her and her loved ones for death? This part of life is scary enough. The politically driven shouldn't make it worse with denial and deception.
Eileen Weber is a nurse attorney serving on the board of directors of the 4th District Minnesota Nurses Association. She lives in Washington County.
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