Is My Father Suffering?

Is my father suffering?

His brain is deteriorating from undiagnosed neurodegenerative diseases that result in a set of symptoms termed “dementia.”

He is able to make sounds but not to form words with his mouth. He is unable to focus his eyes. To the best of my ability to read my father after 63 years of knowing and speaking with him, to discern that he has awareness, and knowing his wishes should he develop dementia, my sister and I believe my brave father voluntarily and intentionally stopped eating and drinking 11 days ago.

When my father’s grandparents, parents, and step-mother became elderly, they went to nursing homes, were kept warm and dry, kept pain-free and distress-free with medications, and died as people do. In 2011, my mother died at home under my father’s care, supported by hospice. The stories of their deaths were sad, not harrowing.

Although my advance directive for dementia care is written in first person, its precision results from the saga of torment my father has endured as he has begun to decline. With an advance directive, with a supplemental directive for dementia care, at a highly-rated private  facility that provides compassionate, meticulous care, with a well-respected hospice service, my father has endured immeasurable suffering because he is only allowed to have certain medications, at particular doses, under some conditions, assessed by archaic measures, at specified intervals.

My phone is full of photos of his face in anguish, of him prostrate on the floor, scraping up the particulate matter created in his perception by his individual horror story of dementia-related psychosis.

Have you ever tried to *make* somebody do something? Try to make the current health care system give anti-psychotics, sedatives, anti-anxiety and pain medications, in sufficient doses with sufficient frequency, to its elderly citizens, stripped and helpless, distraught by the side of the road. Holding fast to ill-begotten beliefs that “Medicine is bad” and “Painkillers cause addiction,” the priest and the Levite fold their arms in disapproving righteousness as one of their kindest, most devoted citizens, Robert H. Giles, Jr., Virginia Tech Professor Emeritus, a former member of the U.S. Army Rangers reserves, grimaces in anguish, hand to his head.

Where is the Good Samaritan now, who sees reality and humanity as they are, unfiltered by dogma, and offers mercy?

I’ve heard one too many health care providers declare that my father isn’t aware of what he’s experiencing. Their statements, born of subjective, personal experience, perhaps based on practice wisdom and work experience, are hypotheses. They are not research data.

My father lies in a bed, nearly unable to move. He is shifted by staff members to prevent sores. He is given medication on a prescribed schedule. Today is Thursday. On Saturday, when I put my head on the ribs that have become his chest (What, does he weigh, half of his normal, fit, 200 lbs., maybe 100 lbs. now?), he reached his hand, fingers in a claw, to hold my head. On Monday, I watched and listened in horror as he sat straight up in bed, arms outstretched, crying out in wordless agony for air. We had to wait 15 more minutes for his next dose.

What does science say? Is the end-of-life brain comparable to the brain under anesthesia for surgery, the focus of much research on consciousness? Is the end-of-life brain with dementia, in an unknown pattern of decay and, therefore, of unknown functionality, comparable to a “normal” end-of-life brain? And what are the authoritative definitions of the terms we throw around: unresponsive, unconscious, unaware? How about “pain,” “distress,” “agitation,” “suffering”?

One of the last sentences my father, with great effort, uttered to me was: “I am worried about you.” The last word I made out when my sister and I were together with him was, “Wonderful.”

My father loved life and he loved us. Did my father sit straight up in bed due to an activated brain stem? Or, rather than lie in victimized, resigned silence, did he “not go gentle into that good night,” but protest, burning and raving at this forced closing of his life and love?

The only misstep my father took was trusting society and medical science to take care of him as an old man, as society and medical science took care of his parents, his grandparents, and my mother.

“What would Daddy do?” introduces a new level of belief-based dogma to the conversation. Daddy’s – anybody’s – beliefs, however wise they might be, are not facts and data. But my father explicitly asked me to write anything from his story that I thought would be helpful to others.

In this 2013 Radiolab interview with physicians – including reports on studies of interviews with many physicians – about their own ends of life, what did the vast majority of physicians ask for? No antibiotics, no restorative procedures or meds, no hospitals. Only thing they wanted? Pain meds.

How do I interpret all my observations and my reviews of the research literature?

All I can think to suggest is to take matters into your own hands while you can.

1) Hire an attorney to write the most comprehensive AND specific advance directive possible in your state or nation.

2) Create a supplemental advance directive for dementia care by copying and pasting into a Word or text doc the research-informed version I published on my blog here. Modify the text to suit your own values and situation, and run it by your loved ones, your designated health care agent, and your attorney.

3) Make an appointment with the physician you expect to give you end-of-life care. Take a copy of your advance directive and your supplemental advance directive for dementia care to the appointment, present them, and ask the physician if they will honor your wishes.

In 2002, Perkin and Resnick wrote, “These patients [at the end of life who are gasping for breath] have some level of brain activity and it is at least possible that they can feel pain and suffer. Given this lack of certainty, we believe that the morally most defensible position is to err on the side of relieving possible pain and suffering instead of erring on the side of not relieving pain and suffering. There is a great deal we do not know about human sensation, awareness and, nociception, the noxious sensation of pain as such, without regard to its emotional significance.”

Ask your physician if they will have mercy and “err on the side of relieving possible pain and suffering instead of erring on the side of not relieving pain and suffering.” Watch their faces as you listen to their answers. Granted, your reading of their faces and words isn’t scientific data. I hypothesize your observations, however, will speak volumes.

4) Make an appointment with the assisted living facility at which you expect to receive end-of-life care. Take a copy of your advance directive and your supplemental advance directive for dementia care to the meeting, present them, and ask the facility’s representative if they will honor your wishes. Again, as you watch and listen, collect your own case study data.

5) Make an appointment with the hospice service with which you expect to receive end-of-life care. Repeat.

6) Be brave. Don’t turn away. As my father would say, “Do the best you can.”

It is now 5:45 AM on Thursday. We have an agreement that I will be messaged if my father seems near death. I check my phone. No messages. My father lives.

Is my father suffering?

Oh, Daddy. I am so sorry.. . . . .

Update 6/15/22

My dear father, Robert H. Giles, Jr., died 5/5/22. Here is his obituary.

“Increasingly, people of all ages are concerned about their own future dying experience, especially after having witnessed the prolonged and sometimes horrific deaths of loved ones occurring in institutional settings across the United States…Consequently, a growing disparity remains between individual desires to die well, on one’s own terms, and the reality of how people actually die in the United States.”
– Black and Cskikai, 2014

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