ETHICAL CAREGIVING IN AGING AMERICA
See Dr. Winakur’s essays here: Meditations on Geriatric Medicine
LETTING JULIA GO
Not long ago, Julia died. She was in her 84th year and I had been her doctor for the last eleven years of her life.
She was a patient and stalwart woman. She had to be. I—along with a number of specialists—followed her for many complex medical problems, duly reviewed each time she came in for a visit. These issues included hypertension, hypothyroidism, ulcerative colitis, anemia, longstanding arthritis, osteoporosis, and recurrent urinary infections. In the last year or so Julia had become demented, a combination of age, hardening of the arteries as well as probable Alzheimer’s disease. She was on a score of medications including some very tricky and dangerous ones like corticosteroids and immunosuppressive agents. One by one her organ systems were toppling, like dominos–as one failed another was sure to follow.
As a geriatrician, I am used to caring for patients like Julia. This is how I spend my days, how I have spent my life. One after the other, my patients come in for their visits, or I check them day by day on my hospital rounds. I notice a small change here, a decline there. I remake and re-model the medical regimen a bit with every encounter, try a dosage change here, a substitution there. The object is always to get my patients, my friends, back on their feet, keep them at home, keep them going a while longer.
A day will come for each when I know I will have to let go, say my final good-bye, hope I have done my best. In a way I am used to this, my white coat starched to armor. How could I go on year after year as I do were I still as tender and green as I once was? Still, these losses do not roll off my back. They never have and they never will. I have learned to accept who I am.
Families, I know, are not so used to death, to losing their loved ones. Julia’s family is like this. The last time I hospitalized Julia, she was in for a month. She started out in terrible pain, a consequence of her brittle bones, cracking and breaking everywhere like eggshells, a complication of her age and chronic steroid usage. She was on pain pills and anti-anxiety pills and sleeping pills and became even more confused and agitated. She had hallucinations and kidney failure, lost her blood-clotting cells and developed bedsores.
Julia has half a dozen grown children that love her dearly. They wrung their hands, got upset with the nurses, probably even with me at times. They wanted their mother to get well, to be as she was a year ago or two years ago. They wanted me to do all I could do. And I tried. During her month-long hospital stay, Julia went through multiple tests and procedures, and saw many consultants. She did not get better and I often felt as if I were only adding to her suffering instead of helping. Finally, I realized that she was not going to get better.
I sat down with Julia’s children, all of them. I did my best to explain where we were heading. I told them it was time to get Hospice involved in Julia’s care. Julia’s family nodded; they studied each other’s faces. Some shook their heads. I told them how important it was for their family to agree on a plan, that the last thing I wanted was for them to be upset or angry or disappointed in each other with whatever decision they made. They were not yet ready to let go.
Julia went to a skilled nursing facility. She had another doctor caring for her there but the family wanted me to oversee her care and I did. A couple of times she became ill and I treated her at the facility and avoided other lengthy hospital stays.
Julia’s family was not happy with the care at the nursing home. Of course not–it was not like the care she could get at home with family. How could it be? It never is, but families—even large families—cannot keep up and cannot afford the 24/7 caregiving required to keep someone like Julia at home for very long.
She became ill one final time. Her daughter called me. It sounded as if Julia might have pneumonia once again.
“Don’t you think we should put her back in the hospital to find out for sure?” she asked.
I thought about the last long hospital stay, how much I had put Julia through, how little I had helped her despite the efforts of so many people. I took a deep breath; it is always hard to say these words.
“I’d like you to consider Hospice again,” I said. “If you take her home now and Hospice is involved, I think your family will be happier with the care and the Hospice staff will keep Julia comfortable and help all of you prepare.”
The line was silent for what seemed like a long time. There was a sigh, then an answer. Now Julia’s daughter and the rest of the family were ready to let go. It didn’t take long once the transfer back home had been made.
The day in and day out practice of medicine is hard on practitioners like me who devote our lives trying to do the best one patient at a time. I’ve had many sleepless nights these last decades. I am always worried about someone it seems. I am always trying to be perfect and, of course, that is impossible. I have made mistakes and I live with them every day.
But the rewards for me have been great. And I don’t mean the monetary ones. If a doctor wants this, he or she doesn’t become a geriatrician. A plastic surgeon, maybe. Or a radiologist or dermatologist. They don’t do what I do.
Here is my reward, here–in these few lines which came to me in a handwritten note shortly after Julia passed–is why I continue to go into work, to minister and guard my small flock of America’s old, old and oldest, old:
Words cannot express the sincere gratitude we feel for all the love and concern you showed our mother. In all the years she was your patient she was treated with the utmost respect and dignity that she well deserved. Her medical needs were always met with your kind, conservative approach. There was no problem or concern of hers too small for attention in your eyes. Speaking for all my brothers and sisters, we thank you from the bottom of our hearts, not only for the care you gave mom but for the time, love and concern you gave to each of us. As difficult as death can be, with your gentle spirit you guided us through every step until her last breath.
Tomorrow is another day. I will go into the office once again. Along with all my departed friends, Julia will be with me. What they—and their families– have taught me, I will bring to those who still come to sit in my waiting room.