A story with questions: "A Time To Be Sure"
My father had generally been a happy man who enjoyed many aspects of life. Sadly, during his last four years, several strokes led to major deterioration. Once a successful electrical engineer and active in both golf and tennis, now, all he could was sit in front of the TV in our living room, and open his mouth to eat when someone (usually me) fed him or gave him a drink. I tried to make his life more interesting by sharing the daily events of my life and by commenting on what I noticed he watched on TV. I also tried to bring joy to his life by preparing his favorite foods, even though they had to be pureed.
According to his neurologist, Dad had an “expressive aphasia.” He could understand language perfectly, but he couldn’t talk at all. That’s because one of his strokes knocked out the part of his brain that is essential for creating speech. So, to learn what he wanted, I had to guess by asking a series of questions. That may sound frustrating, however it usually didn’t take long before he stopped shaking his head “No,” and nodded “Yes,” instead. Still, I’m sure he missed our regular conversations as much as I did. --No, definitely more since, after all, I could talk with other people.
I could figure out how Dad was feeling from the expression on his face, whether or not his eyes were keenly focused, and how much enthusiasm he showed as he shook or nodded his head. Sometimes, Dad looked depressed but I never asked him directly since I feared asking that question might make him wonder if he was a burden to me. Yet at other times, Dad would brighten up, especially as we’d toss a volleyball back and forth. I loved to see him smile when I fumbled or threw a wild ball. But his joy didn’t always last. If he wanted to stop playing, he’d hold on to the ball to signal that our game was over.
One day, Dad coughed up green phlegm and his temperature rose to 102. I called his doctor and received a shock – some unasked-for advice. He said I should not feel morally obligated to treat Dad’s pneumonia, that before the antibiotic era, pneumonia” was called the “friend of the old and sick.” I felt stunned as I hung up the phone. Dad’s doctor had just given me a clear message that I could choose to let Dad die untreated. I looked at my father. He was so sick that he couldn’t even respond, “Yes,” or “No,” to my questions. How could I make a life-or-death decision for him, without knowing for sure what he wanted? I called the doctor back and asked him to treat Dad aggressively. Dad spent five days in the hospital where he was treated with IVs and antibiotics. He recovered completely from his pneumonia and returned home.
But he seemed even more depressed after he came home. He would refuse more meals, even his favorites. He closed his eyes in front of the TV. Worst of all, he wouldn’t look at me when I tried to talk to him. And when I threw him the volleyball, most of the time he held onto it right away. That was his way of saying that he didn’t want to play at all.
One morning I woke up and realized I might have been avoiding the harsh reality of what Dad was trying to tell me by his behavior – that he really didn’t want to live any longer.
I begged a psychiatrist to make a home visit. He spent more time talking to me than trying to relate to Dad. I guess psychiatrists usually have patients who can talk. Any way, he admitted that he little to offer. Even though he said antidepressants would not change the reality of Dad’s physical condition, he left a prescription to help Dad with his anxiety and sleep. He suggested I called hospice, which surprised me since the neurologist did not consider Dad’s strokes to be “terminal.” I had been under the impression that hospice accepted only patients who were expected to die within six months. But when I called hospice, they informed me about their new criteria. After I described what was going on with Dad, they said they would evaluate him for the condition called “failure to thrive syndrome,” which would be sufficient to enroll Dad in hospice.
I asked the hospice nurse how long Dad might go on living like this. She said he could last many, many months. She only saw one way out. “Wait until your father gets pneumonia again,” she said, “and then do not treat him with IVs or antibiotics.” Again I asked, how long? This time she admitted, “It could be a year or more.” I lost sleep myself, wondering whether Dad felt trapped in his almost non-functioning body. Maybe Dad was depending upon me for a way out. Maybe the first doctor had been right. Maybe that’s why Dad was so depressed when he came back from the hospital. I was desperate to learn what Dad wanted, but I didn’t know how to I find out, let alone be sure.
My brother, who lived in the Midwest, called every week. The next time he called, I discussed my conundrum. I was surprised that my logical brother had something definite to offer. He referred to statistics courses he had taken in graduate school, and stated: “If Dad answers a number of questions consistently, then we could be certain about what he wanted.” How many questions? “To be ‘within a reasonable degree of medical certainty,’ scientists and doctors insist on 95%. So if Dad answers five questions consistently, we could be sure. Let me explain: 0.5 times 0.5 times 0.5 times 0.5 times 0.5 = 0.03, so the level of certainty would be 97%.” I nodded my head and said, if you say so.
Some days were better than others for my father, so I decided to wait to pose the ultimate question until one of his better days. When that occurred, I gave him a chance to play ball by enthusiastically throwing the volleyball at him. He threw it right back. Then, I purposely did some silly antics. I tossed the ball over his head and I pretended to strain as I stretched to make a “difficult” catch. It worked! Eventually, I got him to smile. Then, I followed the plan I had previously devised with my brother. I asked, “Dad isn’t this a lot of fun?” I waited for him to nod or to shake his head, but he just threw the ball back. Then I asked, “Doesn’t it make your life worth living?”
But the very next time I threw the ball to him, he held on to it. Then he fiercely shook his head to say, “No.” I anticipated that might happen, so I had written down a number of questions, to ask him. I knew I’d feel nervous, so I had a pad of paper nearby, to write down his answers. This was our conversation:
1. Are you saying that life is NOT worth living for you?
He nodded.2. Does that mean that you do NOT want to go on living?
He nodded.3. Wouldn’t you want to enjoy what you still can in life?
He shook his head.4. Do you want to hasten your dying by not eating or drinking, as long as you are kept comfortable?
He nodded.5. Wouldn’t you want to continue to eat, as long as I offer you your favorite foods?
He shook his head.6. Are you and I talking about something that’s of life or death consequences?
He nodded.7. Are you glad I’m giving you the opportunity to express yourself?
He nodded.8. Would you like to talk about something else, like this evening’s newscast?
He shook his head.9. Do you NOT want to go on living?
He nodded.10. If you can be comfortable, would you want to continue to eat and drink?
He shook his head.11. Would you like to hasten your dying?
He nodded.
During this entire conversation, Dad looked at me intensely. I asked many more than the minimum of five questions my brother said we needed, to reach “a reasonable degree of medical certainty,” but still, it took only a few minutes. I wanted to avoid having any doubts later on. Still, there was a possibility that Dad’s mood might be only temporarily down, so I ended our conversation with,
“Dad, I’m willing to honor your wishes, but I need to make sure you’re not just having one bad day. Could we have another conversation like this one, again, say in a day or so. Okay?”
He nodded.
Two days later, every one of Dad’s answers was the same.
We had a whole month’s supply of medications for anxiety and insomnia so I asked Dad, several times to be sure, if he eventually seemed uncomfortable but could no longer nod or shake his head to indicate what he wanted, if he would prefer more medication or food or water. He clearly indicated he would want medication. Actually, the question never came up. For the next three days, I continued to offer Dad his favorite foods and a variety of fluids at regular intervals, but he consistently shook his head to refuse them. And when I asked if he wanted more medication to lower his anxiety and help him sleep, sometimes he nodded and at other times he shook his head. Every time Dad woke up, I’d offer him the same choice. He never chose to resume food and fluid. He was only awake for short times before he resumed what seemed to be a calm and comfortable sleep. The times between his waking up got longer and longer. Eventually, he didn’t wake up but remained in what looked like a very deep sleep. After a total of eight days, he peacefully passed on.
I’ve often reflected back on the way my father died. When I do, I experience almost no guilt. I will explain the “almost” part in a while. First of all, I was sure that I had asked a sufficient number of questions to be sure of what Dad wanted. Second, I asked him at his best possible moments. Third, I gave him multiple opportunities in those first three days to ask for food or fluid.
So why “almost” no guilt? Because it still bothers me that, with the benefit of hindsight, I’m now sure Dad would have not wanted me to instruct his doctor to treat his pneumonia. That is really my only regret. I wish I had used the multiple-question technique – to find out what Dad wanted – before he got so sick that he couldn’t indicate Yes or No to tell me whether he wanted to be treated.
When I tell this story, people sometimes ask if I consider my role in helping my father as assisting him to commit suicide. My answer is definitely NO, even though the process most likely hastened his dying. I am certain that the medications Dad took did not end his life. Most important, he always had the opportunity to change his mind to eat and drink. Since Dad always had that choice, my role was limited to only helping him accomplish what he chose. I’ve spoken to medical doctors and attorneys and they all insisted that since Dad was mentally competent, he had the legal right to refuse food and fluid, like any other treatment.
One final note: Having seen how peaceful this plan worked for Dad, I hope that when the time comes for me to make my final transition, someone will have the courage and patience to discuss this option while I can still answer Yes or NO, and will then honor my last wishes. That might not be necessary, however, since I put my last wishes in writing and had them witnessed. I even included this story, to be clear and convincing.
Just because a person can no longer speak does not mean s/he has lost decision-making capacity. Since some relatives tend to speak for patients due to their impatience, I added the following paragraph to my Advance Directive:
“As long as can indicate ‘Yes’ or ‘No’ – even if only by squeezing a hand or by blinking my eye, I want all concerned to have the patience to ask me what I want. Please ‘listen’ to me, letter-by-letter, if necessary.”
Asking a person to choose letters increases their ability to interact with the environment, which is an essential quality of being alive. It expands the option to respond to questions that others compose (as above) by permitting them to initiate their own statements. That could be full-time job, but it is so important that Philip Kennedy et al [2004] have developed a brain communicator system to overcome this challenge in people with profound paralysis and mutism. They record EEG-like signals from conductive skull screws.