I met Judy when she was 27. She’d been the driver of a car that was T-boned, her head hit the driver’s window causing massive bleeding in her brain. She was flown to the trauma center where I worked, and was taken directly to the OR for neurosurgery, after which she became my patient in the Neuro-ICU.
Judy’s prognosis did not look promising. Full recovery wasn’t possible with the brain injury she’d sustained. There was a very real potential for her to remain in an unconscious, vegetative state permanently. Her parents, the first to come to her bedside, were understandably devastated. They wanted every viable treatment done, as any parent would. During the next visitation period, Judy’s husband arrived. He told me Judy would not want to live like Nancy Cruzan*. Unfortunately, Judy had no advance directives, her wishes were not documented. Her husband said they’d watched the media coverage of Cruzan, and Judy told him she would never want to live like that.
People who’ve lived through this tell us how painful their recovery from CPR is.
Since Judy’s heart was strong, she survived many resuscitations (Code Blue — CPR) because without her instructions written out, and a family divided on what type of health care to provide, as medical staff we’re obligated to continue treatment until all options are exhausted. Resuscitations require caregivers to compress a patient’s chest, frequently breaking ribs, until a heart rate returns. People who’ve lived through this tell us how painful their recovery from CPR is. Judy’s tragic condition persisted for several weeks in our Neuro-ICU, where she endured many painful procedures to keep her alive. When she was finally stable enough to transfer to the step-down floor, she’d not regained consciousness, she had a tracheostomy, a ventilator, and PEG tube (percutaneous endoscopic gastrostomy, a tube placed through the abdominal wall into the stomach for nutrition, fluids, and/or medications). While I don’t know her final outcome, one thing is clear, those who mattered most to her suffered much more than they would have if she’d spoken for herself through an Advance Directive and a Healthcare Proxy.
I wish I could tell you I made this story up. I can’t, and it still happens daily. In the blink of an eye. At exactly the wrong moment in life. There is no convenient time. We don’t know when our time will be.
Are you prepared?
In what way could an Advance Directive have benefited Judy and the ones that mattered most to her? Imagine they were having a BBQ and brought up the Nancy Cruzan story. All of them would’ve weighed in on it. It’s rare that stories such as these don’t elicit a great deal of controversy, so it would’ve been a lively conversation. That’s perfectly fine. Start that conversation. Chances are we all could find out more about what we do want and what we don’t want for healthcare at the end of our lives — no matter when that day comes. The more we talk, the clearer we get. If they would’ve had one conversation, perhaps they may have had some idea of what Judy wanted, and what she didn’t want for healthcare. The tragedy that happened would have been less traumatic, caused Judy less pain, her family less guilt, and perhaps she would’ve died a less painful death.
Have you had the conversation? Will you have the conversation?
*Cruzan was a 25-year-old woman who remained in a persistent vegetative state for 8 years until her tube feeds were legally allowed to be discontinued.