by Tyra Phipps, Ed.D. (tyra.phipps@gmail.com)
Photo by Getty Images
I Know You Love Me---Now Let Me Die was written by Dr. Louis M. Profeta, an emergency room physician at St. Vincent’s Hospital in Indianapolis, Indiana. With a kind, loving heart and a brilliant scientific mind, this extraordinary man answers every email he receives from people who are in the throes of dying or making decisions for loved ones nearing the end of their lives. He is a prolific writer and speaker on spirituality in medicine. Dr. Profeta’s perspectives on life and dying follow:
I’ve been practicing emergency medicine for close to a quarter of a century now and I’ve cared for countless thousands of elderly patients. I, like many of my colleagues, have come to realize that while we are developing more and more ways to extend life, we have also provided water and nutrients to a forest of unrealistic expectations that have real-time consequences for those frail bodies that have been entrusted to us.
This transition to doing more and more did not just happen on a specific day in some month of some year. Our end-of-life psyche has slowly devolved and shifted and a few generations have passed since the onset of the Industrial Revolution of medicine. Now we are trapped. We have accumulated so many options, drugs, stents, tubes, FDA-approved snake oils and procedures that there is no way we can throw a blanket over all our elderly and come to a consensus as to what constitutes inappropriate and excessive care. We cannot separate out those things meant to simply prolong life from those meant to prolong quality life.
Nearly 50 percent of the elderly US population now die in nursing homes or hospitals. When they do finally pass, they are often surrounded by teams of us doctors and nurses, medical students, respiratory therapists and countless other health care providers pounding on their chests, breaking their ribs, burrowing large IV lines into burned-out veins and plunging tubes into swollen and bleeding airways. We never say much as we frantically try to save the life we know we can’t save or perhaps silently hope we don’t save. When it’s finally over and the last heart beat blips across the screen and we survey the clutter of bloody gloves, wrappers, masks and needles that now litter the room, you may catch a glimpse as we bow our heads in shame, fearful perhaps that someday we may have to stand in front of God as he looks down upon us and says, “what in the hell were you thinking?”
When it comes time for us to be called home, those of us in the know will pray that when we gaze down upon our last breath we will be grateful that our own doctors and families chose to do what they should instead of what they could and with that we will close our eyes to familiar sounds in a familiar room, a fleeting smile and a final soft squeeze of a familiar hand.
Challenges of Aging
Presently, 46 million Americans are caring for their elderly loved ones suffering from dementia and other physical frailties at home. The burden to families is great financially, physically, mentally, and spiritually. Yet, can there be an appreciation of the aging process? Ms. Amy O’Rourke, President of The Cameron Group spoke on the NPR program, Growing Bolder, March 13, 2016. She believes that the disruption of aging includes a body that slows down but inside there continues to be growth along with greater wisdom. Is there a way to prepare for the aging process that alters much of what can be physically accomplished, yet allows for a greater appreciation of the mental and spiritual capacities within?
Mr. Dave Berry wrote on May 21, 2016, “I have to stop and consider my place in the universe, at age 69. The frailty of the human machine poses ever-increasing challenges with age (and even without aging's effect). At this stage of my life, I have come to realize that the battle becomes one of the human spirit vs. the human flesh. We’re learning much about how the brain can lose its integrity, along with the associated bodily consequences. However, I don't think enough promotion has been given to "spiritual" findings. One particular study I'm thinking of involves the Duke University research on the effect of prayer. This is just one example of the power of spiritual forces and how they intersect with the physical realm.
My personal theory about dementia is that, although physical processes can certainly introduce it, a human's individual spiritual focus and intensity can have a long-term delaying effect. Of course the power in numbers of the masses of general society overwhelms the individual cases of spiritual victory over physical demise. I acknowledge that dementia is a significant global issue, but I think more needs to done in the area of spiritual studies. This problem is only going to get worse as life expectancy, especially here in the U.S., increases. For many Gen Xers and Millennials, living to 100 or beyond will be no big deal (unless, of course, robotic AI doesn't overtake them). I look at my four grandkids and ponder what wonders and challenges they'll face in their long lifetimes ..”
Long-Term Care When There Are No Other Options
What about the problem of no family, few friends left, or single and alone with the only option being long-term care? The following contributions shed light on the dark side of long-term care assisted-living, and skilled nursing along with dementia units that may be far from the preferred way to live out the last years, months, and days of a lifetime.
Mr. David Cravey wrote on May 19, 2016, “Nursing home information visit today. The patient, stroke victim, was only given a shower every 15 days. Also, a patient that had a stroke, forgot how to eat. Nursing aides set her tray in front of her and left, picking up the untouched tray later. Man’s inhumanity to man.”
Ms. Julie Kreger wrote on May 20, 2016, “I, too, am appalled by the things that happen in these homes. Many of those people don’t have an advocate, or someone to stand on their behalf, to help them with a situation. Before being my aunt’s caregiver, I was naïve to this going on and now, it just sickens me. I am sure there are those that have a real passion for doing the job but there are too few of those people out there, most unfortunately.
Up until my aunt’s ordeal, I wasn’t sure how I felt about the dying process but after the doctors used her for science as a guinea pig, society should be better to people….we should be more humane towards our loved ones. I certainly believe in what Jack Kevorkian was trying to do! Hopefully, more states choose to, “Let Me Die.” When the gal (I can’t remember her name) was dying, last summer (??) and she moved to be able to die legally, I said to my family at that time, that is what I wanted to do because what my aunt went through was just awful. If there would have been a pill to give her, or a shot to give her, I would have done that for her. So many nights that I sat there with her, I really thought about unplugging her oxygen and feeding tube, since it was heart-wrenching to see her agonizing daily struggle when we both knew what the future was going to be anyway. Sorry to go on and on.
Lillie’s best days were at the Hospice House in Somerset. They were so kind and professional there! She had the very best care with the most loving nurses! Fortunately, she could afford that the last 2 months of her life. We were truly blessed with those angel ladies!!!”
Ms. Jan Bond wrote on May 8, 2016, “We definitely need to learn to take care of each other. It’s imperative to our own health and sanity. Is especially important for those who don’t have immediate family to help them. I think we need a giant complex that allows us to stay in our own dwellings and support each other, including taking each other to the geriatric playground to swing, ride a merry go round and have fun. I really believe it’s possible. I have never been a fan of nursing homes and even more so now. They take your money only to turn around and treat you like a day old garbage. If they don’t want you around, they simply toss you aside and move you on without a single care about what they’ve done to you. I believe we can learn to take care of each other. The money hungry nursing homes are nothing but geriatric prisons. I feel that way after watching my grandmother and aunt die in less than 6 months of moving to one. And my aunt was mobile and in fairly good health-6 months of living there killed her!”
The Choice to Be at Home
Given a choice, most people would rather die peacefully in their homes with familiar sounds and smells, and family surrounding them. Planning in advance for the unknown is so difficult. Dealing with one’s own mortality can be overwhelming. However, the following true stories are examples of people who were fortunate enough to avoid hospitals, noises, bright lights, needles, tubes, and bloodied gloves. Their wives contributed the personal stories. These are testaments to what can be done to let the loved one die with dignity.
Mr. John Barber was a high school social studies teacher in Orlando, Florida, in the 1960s. The first air-conditioned classroom building built on the campus of Maynard Evans High School was named after him. He was very popular with all of the students and the faculty. He had quite a weight problem, but no one ever really noticed. He smiled broadly, joked and held the attention of everyone in any group. He moved into administration. Then after retirement, he developed COPD and there were more problems with his heart and ambulation. There were many visits to rehabilitation facilities. His body rallied to keep him going, but the last time his wife asked him if he wanted to go back to rehabilitation, he said, “No, I’m comfortable here.” His wife, Barbara went into action securing a hospital bed, Hoyer lift, and other medical necessities to rearrange a room in his home where John could be comfortable. He passed away of heart failure in the family room he loved with memories of sitting in the leather chairs where he had enjoyed conversations with family and friends.
He was a professor who looked forward to conducting the jazz ensemble at the end of every semester in the academic years at Frostburg State University. He was a composer and conductor of quartets and symphonies. He was respected by colleagues and students alike. After retirement, a routine visit to the doctor ended with a referral to a specialist. During that appointment, Dr. Jon Bauman learned that he had only a few months to live. The physician told him to get everything in order in his life. He said, “Okay.” He spent as much time as possible with his wife. She was his primary caregiver and in the end, asked, "Do you want to go to the hospital, Jon?” He said, “No, I just want to go over to this window area and look at the backyard.” He was in a wheelchair and breathed as long as he could take a breath. He had been a heavy smoker. By the time lung cancer was diagnosed, it had ravaged his 69-year-old body. He passed away in the serenity of his own home with his wife beside him.
May, 2019