Wednesday, July 15, 2015
Peace and permission
My paternal grandmother, my Mudear, was out on the West Coast visiting family for the holidays when it all started. She had these abdominal pains and a few other symptoms that eventually nudged her children to take her to a doctor. One hospitalization and a few scans later, they'd found an answer for it.
They offered her treatments, which included chemotherapeutic agents and the like. The particular kind of malignancy that my Mudear had was one that could only lead to meaningful recovery via two ways: a miracle (which can happen sometimes) or a major abdominal surgery. Mudear was in her ninth decade and had already lived through her share of health scares. “Getting cut on” wasn't an option.
And so. The doctors offered her palliative chemotherapy which, in my opinion, probably isn't terribly unreasonable for any patient to consider. But sometimes an offer sounds like an endorsement. Patients may not realize that they have a choice and that saying “No, thank you,” in some circumstances is perfectly sane to do.
So somewhere in all of this, my Mudear had my auntie and dad call me in Atlanta. I'd just become an attending physician at Grady that year and I had the distinction of being the only human doctor in the family. And so. Mostly I asked my grandmother about her wishes. I asked her what things she loved doing and got an idea of her general philosophy on the time of her death.
“I don't want nobody cutting on me. Nawwww. I don't want that at all,” she said in her Alabaman accent.
“Okay. Mudear, you don't have to have surgery. But you also don't have to have chemo. You could just go home to Birmingham and spend the rest of your days doing the things that make you happiest.”
“That sound good.”
“What do you like doing, Mudear?”
And that's when she told me that, given her way, she'd just like to sit in her chair and watch her “stories,” cook a little something in her kitchen, visit with folks on her porch and maybe do a little something in her garden. And all of that sounded wonderful to me and exactly like what my grandmother should go to do.
And so she did.
My daddy got her out of Los Angeles before I could even hang the phone up good. And let me be clear, my Mudear was a smart and elegant woman. She'd made up her mind long before I spoke to her and this was her decision. But I will always appreciate her giving me the honor of weighing in as counsel.
Anyways. By the time Mudear got to Alabama, she was still fine actually. There was no immediate awful that punctuated it all. She wasn't stuporous or on all fours. Nope. Mostly, she was fine. Fine enough to sit in her chair and watch her stories, cook a little something in her kitchen and visit with folks. It was actually January when all of this happened so the garden part and the sitting out on the porch part I can't fully recall happening. But the point is that she decided to forgo the hellacious cancer treatments suggested for her 89-year-old body for the things that gave her the most peace.
Family came pouring in. And since she had 11 kids and more than 25 grand babies, that was a lot of kinfolk. And mostly, it was the ones who were closest to her. One of those grandkids was my sister, Deanna.
Deanna had gone to law school in Birmingham. She grew close to Mudear during that time and, at this point, was up in D.C. working for the U.S. Patent and Trademark Office. She called me in her Deanna way and asked me to “break this shit down” to her. She wanted to know what she needed to expect out of this cancer news with her grandmama.
“You need to book a flight or get in your car and drive to Birmingham—right away,” I told her matter-of-factly. And this part I do remember perhaps better than any other part.
“When? Now?” Her voice sounded incredulous. “I thought she was doing okay. That's what daddy and them said.”
“Mudear is about to be 90, Deanna. She is at her home and all of her kids are coming to see her. She's at the house she shared with the love of her life doing everything that makes her happy. She is doing well but I've learned that once folks get to a certain point of peace of mind, they will themselves away long before the health part catches up.”
“Wait. You think Mudear is going to die really, really soon?”
“I think she sounds peaceful. And I think if she has permission from the family, she will make her transition soon. So yes. I think that.”
“Are you coming?”
“Leaving in a few hours.”
Which is exactly what Deanna did. She got down there and saw her Mudear. She sure did. She stroked her face and laughed and cried and talked to her. She hugged on my daddy and our aunties and our uncles and cousins, too. And, from what she told me, all of it was magical. It was.
The last person to talk to my grandmother was my father. She'd called all of her living kids in 1 by 1 to speak with them and he was last. And my stoic, pragmatic daddy was dutiful and diligent in all of those logistical things that you don't want to think about at times like this. But she also knew that that same spirit of his would permit her to let go.
“I'm counting on you to make sure everything works right,” she told him. “I'm tired. And I think I'm ready to go now.” And he knew that this wasn't just about her funeral or anything like that. She meant everything. The family. The harmony. The everything.
“Mudear,” daddy told her. “You've lived a good life. It's okay.”
And you know what? Mudear looked at her son, took 3 big breaths and closed her eyes. And that was that.
I just want to be sure that one piece isn't lost here. Mudear wasn't gasping for final breaths or in and out of consciousness. In fact, if someone had just gone by the medical data points available to them, nothing about her condition suggested she'd pass away on that day. But once you live long enough or work in a hospital like Grady long enough, nothing about her transition would come as a shock.
When I was an intern, I had this amazing patient who had a non-healing ulcer on his foot and 2 gangrenous toes. After a significant number of pack-years of smoking, his circulation was pretty much nonexistent. That same tobacco history had left him with advanced emphysema and COPD. The only way to help him would be to amputate his foot above the knee. But there were two problems with that:
1. His circulation was so poor that an amputation would be unlikely to heal.
2. No anesthesiologist would be willing to intubate him for the surgery given his bad lung disease.
And so. Mr. Farrell, my patient (name changed), was essentially left with a dead limb attached to his body. And that? That isn't compatible with life.
Mr. Farrell had this little Jack Russell terrier that he absolutely adored that was home during his hospitalization. Though his grandson was caring for him, he worried about his pup incessantly. And mostly, I just listened because there wasn't really much I could do about it.
After several days of wound care, pain control and futile antibiotics, my attending—1 of the most senior physicians in that hospital—decided to refocus our goals of care. He sat the team down and laid out his game plan. And then, in true big boss fashion, he left the ward.
My marching orders were pretty simple: He told me to call as many of Mr. Farrell's family members as I could, urging them to come in and see him—today. I admit that I was confused by the urgency because, much like Mudear, he hadn't taken some acute turn for the worse. But I did as told and made those calls.
Family trickled in and out all day. They hugged Mr. Farrell's neck and laughed and spent time with him. Daughters, sons, nieces, nephews. Neighbors, old coworkers, bowling team mates. Grandkids and the kids of those grandkids, too. All had gotten the word that it was time to come see him and all, like me, shocked on arrival to find him looking so great.
Finally, around 4 p.m. or so, my attending physician reappeared on the ward. He was a tall man with great presence, so any time he came into any space, it was noticeable. But this time, it was even more unforgettable. While we made those phone calls to family, he was upstairs flexing his big boss muscle to do something rather unusual.
Suddenly, there was the skitter of puppy claws on the slick hospital linoleum and tiny yips interrupting the ambient hospital sounds. Yes. A dog was on the ward. My big boss attending had gotten the green light for Mr. Farrell's grandson to bring his dog in to see him. His dog, y’all!
Maaaan. That sweet little Jack Russell terrier nearly exploded with excitement the moment he heard Mr. Farrell's voice. Oh how happy that man was! He stroked that dog's back and nuzzled his face into his fur. And his grandson promised him that he would care for that dog as long as Mr. Farrell needed and Mr. Farrell wept when he said that because he knew it was true.
My attending pulled me aside and told me to not to be too surprised if Mr. Farrell passed away that night. And again, I thought he was sort of overreacting but since he was such a big boss, I nodded and went along with it.
“Peace is a mighty thing. That and permission,” he said.
“Yes. Some people just need permission to die. They need to know that it's okay for them to go.”
And that? That made sense to me. It did.
The following morning, I went straight to Mr. Farrell's room. The bed was empty and the sheets were off of the bed. I scurried to find his nurse who quickly notified me of what had happened.
“He went on to glory early this morning. Sure did.” And she said that with a warm, knowing smile.
I think of those pivotal moments so often. The one with Mudear and the one with Mr. Farrell. Now when patients are facing some irreversible illness that has brought them near the end of life—or for those blessed near-centurions who've simply stopped thriving—along with the management of symptoms and pain, I focus on those two things as a part of my treatment plan: Peace and permission.
Last week, I told the family of one of my patients about my Mudear and her final days. They'd asked me what else I thought they should do for their loved one who was very advanced in age and now on the way to hospice care.
“Give her your permission,” I said. “Let her know that you'll be okay and that it's okay for her to go on home.” And that is exactly what they did. She was gone less than 48 hours later.
I guess I'm writing about this because it isn't really scientific, you know? But damn is it important. Sick people nearing the end of their days need those things more than we realize. Peace and permission, man. It was important to my Mudear to know that things would work right. And my daddy promising her that they would helped her to have peace. That and seeing those loving faces of all of those special people and being in her home. And Mr. Farrell? Well, my attending was wise enough to recognize that getting that Jack Russell terrier into the hospital was the very best thing that he could do. And wisdom for doctors? It's one of the most important yet impossible-to-find-in-a-book things there is.
You know? I think lack of peace and angst are often mistaken for vitality. Holding out for peace and permission can translate into will to live. And now I know that, even when the monitors aren't wailing impending doom nor are the vital signs circling the drain, just handling those two items--peace and permission--cuts the O2 off on the will part. But in the very best and most beautiful way.
I'm glad for the lessons I received in death with dignity from Mr. Farrell and my Mudear. They've given me a new way to advocate and a different way to fight. So now? I'm thinking. Constantly, constantly thinking. And trying to find whatever it is that will get my patient closer to having peace and permission. Then fighting like hell to help them achieve both.
Kimberly Manning, MD, FACP, FAAP is an associate professor of medicine at Emory University School of Medicine in Atlanta, Georgia where she teaches medical students and residents at Grady Hospital. This post is adapted from Reflections of a Grady Doctor, Dr. Manning’s blog about teaching, learning, caring and growing in medicine and life. It has been adapted and reprinted with permission. Identifying information has been changed to protect individuals’ privacy.
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