“You all know him better than we do,” the tall, distinguished Indian doctor in a conservative navy suit said. “We need your input to make sure we are respecting his wishes, since he is unable to tell us.”
In that moment, I realized I didn’t know what my brother’s wishes were.
My sister, niece, and I were standing outside my brother’s room in the intensive care unit of Mayo Clinic. A team of nine doctors and other specialists were making their afternoon rounds, some with laptops on carts, and others carrying tablets or notebooks.
Inside the room, my brother slept, heavily sedated, hooked to a forest of monitors and tubes, while a mechanical ventilator did his breathing for him.
It was his sixth day in ICU, and he had been unconscious for most of that time.
The medical team members discussed my brother’s case, making sure they were exploring every angle and doing everything they could for him.
The doctors expressed some concern they weren’t seeing more improvement.
If things do not change soon, they said, more invasive procedures might be called for, and they wanted to be sure the course they took respected my brother’s wishes.
But, what are those wishes?
These are not the kind of discussions that come up over the dinner table at least they never did in our house.
I have known my brother my entire life, as he is 10 years older than I, but we have never discussed his specific wishes in the event he should end up where he is now.
I know how he feels about politics, religion, and countless other subjects, but personal health preferences never came up.
We are fortunate, because he did have the foresight to sign over medical power of attorney to my sister, so she is authorized to make decisions on his behalf.
He also signed a DNR. A Do Not Resuscitate (DNR) order is a legal order written in a hospital or in conjunction with a doctor that states that you do not want cardiopulmonary resuscitation (CPR), advanced cardiac life support (ACLS), or intubation if your heart or breathing should stop.
In this case, while my brother was still conscious, he gave his approval to be temporarily placed on a ventilator.
But, what does temporary mean? A day? A week? A month?
It could mean different things to different people.
We are hopeful that my brother will pull through this crisis and recover. If things do not improve, however, some difficult decisions lie ahead.
No one expects to become incapacitated, or to be unable to express their wishes for their own care.
It can happen, however, and it can do so suddenly, without any warning.
It can be uncomfortable discussing health issues, even with our closest family members.
Some people avoid discussing end-of-life planning, because they don’t want to think about such things.
As difficult as these subjects can be, they are certainly no more difficult than the decisions faced by our family members if we do not provide clear and specific guidance as to our wishes should we be unable to speak for ourselves.
We can’t assume people will automatically know what we would want.
This situation has been an eye-opening experience for me, and I have already begun getting my own affairs organized in case anything should happen to me.
Perhaps it’s a bit like insurance. We may hope these documents and information are never needed, but if they are, we will be glad to have them in place.
Strange though it may sound, I suspect there are times when a medical crisis is harder on the family than on the patient.
Perhaps the kindest thing we can do for those we love is to make our wishes clear while we are able to do so.
These may be the kind of conversations no one wants to have, but they are conversations we absolutely should have, and we shouldn’t wait until we are gathered around a hospital bed to have them.