Showing posts with label death with dignity. Show all posts
Showing posts with label death with dignity. Show all posts

Tuesday, June 16, 2015

Peace and permission.




My paternal grandmother 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.

Cancer.

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.

Nope.

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.

Yeah.

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.

Yep.

Family came pouring in. And since she had eleven kids and more than twenty five 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. Patents 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."

"Damn."

"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 one by one 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 any thing 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 three 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.

Nope.

When I was an intern, I had this amazing patient who had a non-healing ulcer on his foot and two 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.

Nope.

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--one 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 4PM 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.

Yup.

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.

Yup.

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.

"Permission?"

"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.

Sure did.

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.

Yep.

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.

Yep.

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.

Yeah.

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.

My Mudear in the center, surrounded by all ELEVEN of her children.  What a lady.
Words my sissy wrote to me before I got married.


***
Happy Tuesday.

Wednesday, May 4, 2011

This and that.

fairy dust


Your symptoms were classic. It was as if you had read the textbook before they even spoke to you. A bread and butter presentation of a common problem. That is what they reported when you first came in, but as it turns out, your examination suggested something else. Totally unexpected.

"That was what I initially thought," my resident explained, "but then I found this. I was expecting only that; no one mentioned anything about this." 

And so we came to discuss it with you.

"When you came in we thought it was simply that, but then we found something we didn't expect," we said.

"What does it mean?" you asked.

"It could mean this or it could still mean that."

"Which do you think it is? This or that?"

"That was why you were admitted, but this is why we need to keep you."

 "But what do you think? Do you think it is this or do you think it's that?"

"My concern is that it is this. Or this and that."

"This and that?"

"I'm afraid so."

"What's worse? This or that?"

"This is very serious. If it is this it could be at a point that would make it very difficult to treat. If it is that, then there are things we can do to treat it."

"Well, my life has been long and perfect.  If it's this,  I don't want anything that could cause me to feel bad."

"Okay. I will make sure to make a note of your wishes."

A few more days yields a few more answers. Turns out it was definitely this, and wasn't even that at all. You aren't ready to fully deal with this yet, so we follow your wishes and discharge you from the hospital.

 A few weeks later I see you.  This has made you sicker. So sick in fact that it was hard for stoic you to stay at home.

"Hey there," I said.

"This is too much," you replied.

"What would you like for me to do?"

"Just stop this from hurting me so much. Can you do that?"

"I can try."

"I sure hope you can."

"No, I will."

"Okay," you said with a relieved smile. "Okay."

Another week passes and I run into your family member in the Grady hallway.

"This has gotten pretty bad," he said.  He tells me that you asked for me.  He said you asked for me to see about you. "I know you aren't the doctor over this, but still. Can you come?"

"Yes," I said.  "I will come."

I walk in and you seem happy to see me. I am happy to see you, too.  This has really taken a toll on your body.

"I hate this," you said. And then you laugh. Robust and hearty, and not even sick-sounding. You pat the bed beside you and I sat right there on your bed with you.

"Whatcha know good?" I teased using language we both know well. I hoped it would make you feel better. At least a little bit.

"Whew. This is nothing to play with," you replied with a grimace.

"Neither are you," I shot back with a wink. You winked back. "You okay?"

"No," you responded. "I'm not okay."

I looked uncomfortable with that answer because I am a doctor and that kind of answer makes a doctor feel like a failure. You sensed that, and elaborated. "See, I'm not scared of this but I am so scared to leave my family behind. I am the one who always keeps everything together." You shook your head.  "This is so going to be so hard for them."

I don't know what to say. Because you're right and it is going to be hard. I had seen their faces loving on you and flanking you in bedside chairs and wished I had a magic potion for that part even more than the illness itself. Or at least some fairy dust.

"I'm glad you came to see about me."

"I am, too."

You reach over and gave me a hug, tangling me in IV tubing. I hugged you back just the same. After that, we sat and talked and laughed about a lot of different things. And barely even spoke about this and never even mentioned that.  You asked about my children and wanted to know about my marriage. I listened intently, taking mental notes as you shared with me about yours because, to quote you, I was still "new to the game."  I asked you to "school me" on what you thought I should know, and you did just that.  It was great.

That was my last time seeing you.  A colleague contacted me today to tell me that you'd slipped away. Peacefully, just like you'd wanted, surrounded by the people you loved the most.  They were braver than even you expected them to be.  "I will not let this cast a shadow over the end of what has been a glorious life," you'd told me.  And you were right.  You didn't let this win over you or your final hours.

It's weird.  As sad as it makes me to know that a simple visit for that snowballed into all of this, a part of me believes that if had only been that, I never would have gotten to know you in the way this allowed me to.  That would have made your time with me fleeting, your hospital bed simply a revolving door. So if there was even a tiny piece of silver lining in this, I guess I could selfishly say that was it. Because as bad as this was, you still took the time to share a piece of yourself with me. And to school me.

"What's the key to living this long and keeping your family together and happy?"  I asked you as I leaned my elbow on my knee and rested my chin in my hand.  I gazed up at you like a child, waiting for your wisdom to be sprinkled upon me like that fairy dust I'd longed for earlier.

"It's simple," you told me, "for everything in life, all it takes is a little bit of this and a little bit of that. You got that?"


Got it.

***

Friday, April 1, 2011

Beyond belief.

image credit

"One day I'll fly away
Leave your love to yesterday
What more can your love do for me?
When will love be through with me?

Why live life from dream to dream. . .
. . and dread the day that dreaming ends?"

~ "One Day I'll Fly Away"
lyrics by Will Jennings, music by Joe Sample

(now hearing this version on my mental iPod)

____________________________________________________________

My rounds were quiet and peaceful that day. The interns had the day off, and the resident was putting out fires on other floors. This time for you would not be divided by medical student queries or carefully guided tours of your physical findings (with your permission of course.) I was all yours that day.

It was a weekend day, so there weren't even any meetings to race over to be late to or conference calls to dial into or students shuffling their feet in front of my office door or urgent emails to return. The kids were somewhere climbing jungle gyms or splashing in puddles or licking syrup off of their hands with their dad who had kindly sent a text that simply said, "We're fine." So that meant that, on this day, I was all yours.

This day, I saw you in morning light so bright that it made me take pause. Despite the overcast sky and its imminent plans to deliver a torrential downpour, somehow the rays that were stubborn enough to come out any way managed to find you. Your hands were idle, folded over your abdomen; your eyes tired and fearful. It had been a rough night; the pain had been at almost a 'ten' until finally you told someone and ultimately received a higher dose of pain medication.

"I hate to be a bother," you tell me.

"But you aren't a bother," I quickly reply. "If you are in pain, I have failed you."

"Okay." Your face washes over with a blanket of childlike comfort, but not your eyes. I can still see fear. Cancer is something to be afraid of. Especially this one.

I glance over at the window sill. Not a single card or flower. No photos of you posing with loved ones during the honeymoon that preceded this diagnosis and no worried significant other abruptly rising from the bedside chair upon my approach to examine you. It was just you. And today, just me.

"Are you? In pain, I mean?"

"No. I am okay."

"Good."

I carefully pull back your cover and examine your cachectic body. My stethoscope rocking over your ribs; their perfect outlines like some kind of skeletal relief sculpture. Your lungs sound surprisingly clear on this day, and outside of the mild tenderness around your feeding tube, your sunken abdomen is equally unremarkable. I inspect your legs for any asymmetry; your backside for redness from the pressure of lying in bed more than standing up and making it.


No, your exam is not normal. But for this day, it looks pretty close. With the exception of your fearful eyes, it is normal enough to plan your discharge.

"There is so much to coordinate," I say softly. "Our plan will be to get all of this done for you and discharge you first thing in the morning. How does that sound?"

"That sounds good."

"What questions do you have for me?"

Your smile is warm and genuine. Your bony cheeks and wasted temples perfectly framing your every expression. "I think you answered them all."

I reach down and put my hand on your soft cheek. "Are you sure? Is there anything you need?"

You smile again and shake your head. "I'm okay."

"Okay."

I step back from the bed and delicately arrange the covers over your tiny shoulders. I fluff the pillow and tuck another blanket around your neck; enveloping you in as much safety as I can.

"I'll see you later, okay?" I say after finishing my fuss over the bed.

You nod and smile once more.

I walk away from your bed and that morning light. . . . around the thick pink curtain dividing it from the other side of the room where the neighboring bed was empty. Suddenly, I abruptly stop in my tracks. The next thought I continue to replay because it was so memorable. It was simple and clear--like the single chime of a tiny bell--and enough to halt me in place:

Maybe I should go and just sit with you. And hold your hand and maybe even. . . . pray with you. Or better yet just be with you a little longer.

The Grady elders might call this "The Lord puttin' something on your heart." And they call listening to such a thing "being obedient." Others might call it something else or even be uncomfortable thinking about it. Regardless of what you call it, it was something. Something strong yet fleeting that I somehow allowed to come and then go in the blink of an eye.

I lean back around the curtain and into your light again.

"Ma'am?"

You raise eyebrows and turn in my direction.

"Umm. . . you. . . make sure you remember what I said about the pain medicine, okay?"

"I will," you murmur quietly. "I will."

And with that. . . . I leave. Thinking I can do it tomorrow. Letting go of that moment in time on my solitary rounds.


Early the next morning, the intern covering the team on call left a message on my voicemail. You were found pulseless. They worked on you as hard as they could to bring you back. But unfortunately, they could not.

No! I must be hearing wrong!

I remembered your pleading eyes and those words put on my heart. I replayed the message and immediately felt my pulse quickening and my eyes welling.

No! It wasn't time yet!

But actually, it was. That morning, I stood listless in a hot shower crying and crying. Not because I could have saved you. And not because I could have cured you, either. But because I didn't listen. And regardless of what you believe or who you pray or don't pray to, sometimes you get a little nudge that tries to give you a message. This time, your eyes tried to tell me. And even after your eyes tried, something else tried, too. But I missed my cue.

Now I know. That day, I was supposed to be the cards on your window sill and the flowers on your tray. And even though you weren't in pain, in a way I did fail you. I should have yielded to that tug, that magnetic force that was pulling me back to you. And I'm sorry. I'm so, so sorry I didn't.

But.

Today, I will dry my eyes and honor you. And for you, I will never ignore that whisper laid upon my heart again. Because that time was your time. And on that day it was just you and just me. So next time, for you, I will be obedient.

***

Wednesday, December 29, 2010

The Good Fight.




I am reflecting on these words today:

"I have fought the good fight, I have finished the race, 
I have kept the faith."  

~ 2 Timothy 4:7



You fought the good fight. And you fought it your way. For you, this was a death with dignity indeed.

Thank you for your wisdom, your bravery, your trust, and your honesty. Thank you for teaching us all how to better honor our patients. Thank you for . . . . . everything.





"Alright then, friend."