“We don’t want to have our lives extended artificially, by machines, other invasive procedures or feeding tubes, if there is no hope to live a vital life,” Judy stated. A simple declarative sentence. How naive we were!
Daniel J. Whitlock, MD
Judy A. Whitlock, RN
Judy and I have thought long and hard about how we want to die. So, with that in mind, we completed our Advanced Directives, filed them with our physicians and health system, and distributed them to our children via email.
We thought that by sending the directives to the kids, they would understand what we were thinking and asking for and that would be the end of the conversation. A one-way communication; a simple declarative sentence. But, as this story goes, we learned that was not the case for our children and we suspect it may not be the case for other people’s children either. We also had the naive expectation that all our children would agree with each other regarding a course of action, when it came time for us to die.
A few weeks after we sent the directives to the kids, the family gathered for Thanksgiving. As families do, we were all in the kitchen together, and Tim, the sensitive son, said “Mom, this Living Will, you sent us last week; I’d like all of us to discuss it. Could we do that after dinner?” Judy was quite surprised but also very pleased that Tim would ask about this and was especially happy that his siblings agreed also.
Our Thanksgiving gathering included Judy’s three adult children, and 9 of her 10 grandchildren and as the excitement of yet another Thanksgiving dinner settled, the adult kids gathered in a room off the kitchen, laughing and exchanging stories and political invectives. But then Tim, again, made his request to discuss our Living Wills.
I secretly cringed because I didn’t know what this conversation might entail! But as Judy talked about our wishes for our last days, especially if we were in a hospital and especially if we were in an ICU, their attention began to shift to the “what-ifs” of the dying process.
We know that most hospital deaths do not occur in an ICU setting, this was the one they most asked about. If we were to be on a medical or surgical unit, not in an UCU, these advanced directives will most likely prevent escalation into an ICU. The real dilemmas occur, once care has escalated to the mechanical-intervention stage – the Intensive Care Unit.
“We don’t want to have our lives extended artificially, by machines, other invasive procedures or feeding tubes, if there is no hope for us to live a vital life”, she stated. This simple declarative sentence was quite clear to Judy and me; Judy is an RN and I am a physician with extensive ICU experience. We want life support technology to be used only as a bridge to our meaningful recovery. We knew what we wanted but we slowly began to understand that they had a huge raft of questions, questions that revealed their lack of understanding of what would be required of them, when we faced the ends of our lives.
As a clinician, I was prepared to launch into the minutia of “Brain Death” or “Persistent Vegetative State”. I naively thought that was what they wanted. I was wrong.
And that wasn’t what they wanted. It was about their fear of losing control, control in a situation they barely knew anything about. They wanted to know what constitutes the process of decision making in an intensive care or other setting, how decisions are made and who is the boss! They were fearful about not knowing even what questions to ask, of sounding stupid and ultimately becoming irrelevant in a situation, not of their choosing; a situation that is extremely important. Facing the death of a loved one, is scary, especially if daughters and sons have the responsibility for supporting care options, of which they have little prior experience. Death, for them was something that was introduced by e-mail, text or a phone call in the middle of the night. The announcement of death was always something that HAD happened, not something that needed their input BEFORE it happened.
None of them had ever sat beside the ICU bed of a loved one, as important decisions regarding care needed to be made. Our kids knew about brain death and that it is a fact-driven diagnosis and has a certainty, that can’t be argued away. They knew that, with brain death, protocol would take over and that life support would be terminated as per State law.
But would it be done, without the family there? Would the family have the chance to express their grief and last goodbyes? Could it be a private process? What if one member of the family disagreed with the diagnosis?
Travis, the oldest child, asked “what does the phrase, ‘no hope to live a vital life’ mean”? Does “No hope” really mean “No hope”? “And if it does, how do we know? What if the doctors are wrong?” Can’t doctors do what they want to do, unchallenged? Who speaks for the patient?
Judy then made it clear that if this situation were to ensue, she wanted to be home in St. Cloud, among a supportive community and in a hospital where we had experienced trusted care, for the last 25 years. “Bring me back, if you can”, she said, “I want to be among friends and family – even though I might be unconscious.”
As Judy talked about being in the dying process, she talked about unconsciousness. And if the end were uncertain, she wanted the kids to know that it was alright to “let me go”. She didn’t want a feeding tube, to sustain her life if living would mean not being able to meaningfully interact with her loved ones. She doesn’t want to suffer, unnecessarily, just to prolong her life. But Tim, the highly sensitive son, says, “And what if they say there is NO hope, but I see a twinkle in your eye?”
And Mindy, the ordained minister, asked “Is it ever OK to stop care if something, anything, can be done to sustain life?
These were all excellent questions; questions we had not anticipated. But the questions continued as if we had ignited a brush fire. It seemed like everyone wanted in on the conversation.
Travis, again, “We understand that if you are brain dead then there is no hope. But what if you’re not brain dead but just unconscious. How will we know what decision to make? Will doctors allow us to make decisions, or will they do whatever they want to do without our input? And, what is the point of a Health-Care-Directive if we aren’t allowed to make the decisions that we think you want, Mom”.
And Mindy quickly stated “And do the doctors have the power to just make the decisions they want? What if the three of we kids can’t agree? What if one sees a twinkle in your eye and another doesn’t? Who gets to decide?”
The wildfire erupted into a range-fire!