Trapped inside
There’s a time to live and a time to die — but how do we prepare for what lies in between?
Trapped inside his own body, Martin Pistorius was forced to watch “Barney” reruns over and over at a care facility. “When I try to speak, I’m silent. When I will my arm to move, it stays still,” the South African recalled of his days spent unable to communicate.
Yet while in this state, Pistorius’ mind “leaps and swoops, turns cartwheels and somersaults as it tries to break free.” Were it not for an observant caregiver, the South African might still be existing in unwelcome silence and not a successful author.
Ecclesiastes refers to a time to live and a time to die, but modern science has shone a light on a netherworld inbetween inhabited by Pistorius for over a decade and by thousands of other patients in nursing homes and acute care hospitals around the world.
One study estimates that over one quarter of a million people in this country — assumed to be unconscious after suffering a severe brain injury — are actually existing in this so-called “minimally conscious state,” cut off from rehab, as reported by Houston Chronicle reporter Mike Hixenbaugh in his four-part series, “Alive Inside,” the first segment appearing in today’s paper.
Let that sink in. Some people with functioning minds but unresponsive bodies are being warehoused in nursing facilities. Minimally conscious patients are lying in hospital beds without music or even a purple dinosaur for company. An indeterminate number of men and women deemed vegetative could, with rehab, go on to live a life in the outside world.
This cruel treatment is not only the “civil rights issue you never heard of,” as noted by medical ethicist Joseph Fins, but its discovery has profound implications for all of us.
If you are one of those people who has told your spouse, “If I’m unconscious and intubated without a clear path for recovery, pull the plug immediately,” you might want to rethink your instructions. Since consciousness isn’t a switch that you turn on and off, you should consider asking those who will decide your fate to do a complete, accurate and continuous assessment of your condition before removing life support.
If you’ve executed a living will, that’s a great first step, but it’s not sufficient to take care of all possible futures that you could have. Do you have a firm grasp today of what you’d want to do if an illness left you minimally conscious with a chance of recovery? Families should talk about end of life and, where possible, include their medical providers in the conversation. They should do this while they’re healthy.
As the brain is more resilient than previously thought, families, their physicians and other medical personnel should take more time over life and death decisions. For instance, as many as 2,300 cardiac arrest patients could be saved each year simply by waiting three days before removing life support, according to a study. “Without a doubt,” Fins told Hixenbaugh, “we are letting people die in the hospital who might otherwise recover.”
Trauma surgeons, medical personnel, insurance agents and families dealing with brain-injured patients assumed to be unconscious need to routinely ask themselves: Am I missing something in this debilitated patient? No one wants to raise false hopes for grieving families and friends, but no one wants to look back and wish that they had handled an end of life decision differently.
In the past, dying happened soon after a life-threatening illness or injury occurred, and few had to endure prolonged existence in a suspended state. Now, along with opportunities for life that past generations never dreamed of, scientific advances pose challenges that only wisdom can resolve.
“All come from dust, and to dust all return,” Ecclesiastes says. It’s up to mankind to nurture, protect and cherish all life in between as best we can.
As the brain is more resilient than previously thought, families, their physicians and other medical personnel should take more time over life and death decisions.