“Doc, I’m tired of this.”
I looked at V’s wan face. The vibrance that I adored had been sucked out of her over the last 9 months by chemotherapy and radiation. I remembered the moment she cried in my office, angry I hadn’t been the one to tell her that her breast cancer had returned everywhere.
Now she couldn’t muster up any emotion – no tears, no anger, no frustration.
Just tired.
She was coming in to see me today for her follow up hospitalization and LTAC (long term acute care) stay after her blood counts got so low she required several units of packed red blood cells and platelets. Of course, her oncologist was taking care of all that – my responsibility today was to address her high blood sugars.
“They kept poking me every hour of the day it felt! My fingers, my belly, my keister! And then they wouldn’t let me eat cake! Do you know how awful the diabetic diet is??
I can’t live like this. But… I guess they keep telling me they’re not ready to let me die yet.”
Though I hadn’t seen V in 4 months, I knew the oncologist’s reports. Metastatic breast cancer with lytic lesions riddling her spine, pelvis and now, new spots in her femurs. Super high doses of dexamethasone to help her deal with the bone pain, causing the known side effect of raising her blood sugars. Undergoing radiation to help decrease the size of these new cancerous spots to help with the pain and perhaps prevent her from shattering her brittle bones via a pathologic fracture if she were to fall.
Everything screamed palliation at this point – we weren’t treating to cure, we were treating to help her gain a few more months, maybe years. But she had already made it 9 months in and her cancer was taking over her skeleton – how much more could her 70 year old tired body take?
Did she know this? Had someone already told her the remainder of her life likely measured in months, not several more years? Isn’t it the oncologist’s place to say this to her, not me?
I scanned the chart of blood sugars she diligently kept track of. Finger pokes 6-8 times a day. Insulin shots 5-6 times a day while she was in LTAC, 1-2 units at a time. In looking at her blood sugars at home without insulin, however, none of the blood sugars registered above 180.
I could feel my blood start to boil. Classic example of someone following some preset algorithm for the sake of chasing “optimal” numbers. Just because we can, doesn’t mean we should.
“When I reviewed your notes, I saw they stopped the dexamethasone – have you actually stopped taking this medicine?” I asked.
V nodded her head. The temperature in the room rose as I clenched my jaw to prevent some choice words from coming out.
Had no one taken the time to think this through?? Why would we continue to treat the side effects of a medicine that has been discontinued, which are obviously improving as one would expect? In the meantime, she’d been stabbing her fingers 6+ times a day for over a week for absolutely no gain.
“We… you don’t have to do this,” I shook my head.
“I beg your pardon?”
“I’m not keeping you on insulin.”
“But, my oncologist said…”
“Yes, I understand what he said. And technically it would be great to have your blood sugars lower. But there’s not much to gain here by you poking yourself at least 10 times a day. That’s not adding to your quality of life at all, and in fact, it’s actually making it much worse.”
Tears collected in her eyes, but this time around there were no chest heaving sobs. She was so tired, she couldn’t even blink away the tears.
After a few silent droplets fell, she finally asked,
“Are you giving up on me, Dr. M? It’s because I’m about to die soon anyway, isn’t it?”
The keyboard tapping of my scribe, A, suddenly stopped, revealing the yawning void I inadvertently threw myself into.
Careful, M. Tread softly here…
Squaring my shoulders to hers, my eyes met her wounded ones.
What did she see in mine? Regret? Fear of saying the wrong thing? Or merely her reflection spilling tears like the waterfalls she loved to paint?
“We’re all going to die, V, one way or another. What I’m interested in is helping you live the way you want to live. And me making you check your blood sugars 6-8 times a day, then shooting yourself with insulin another 5-6 times a day, and telling you that you can’t have that damn piece of pie or cake that you want is not going to help you live your best life.
I want you to live your life, free from all that. I want you to be carefree about your food, to eat what you want, especially since you’re already so nauseous from the chemo. If you’re going to eat, I want you to enjoy it without being worried about the extra 2 pokes you’re going to have to give yourself to get some number down.
This is not me giving up on you, V. This is me telling you it’s okay to take this part of your life back.”
V nodded, then unexpectedly reached out and took my hand. My tan hand contrasted against her frail, pale skin, punctuated by lines of blue veins that had remained untouched from IVs due to her port on her chest.
“I’m scared, Dr. M.”
“I know. And that’s okay. We can do the insulin thing, but I just want to let you know, we don’t have to. You always have a choice, even now.”
As she mulled it over, a hint of her first smile of the day brightened her pale face.
“So you mean I can choose to eat my apple pie with all the ice cream I want? And I won’t have to check my blood sugars?”
“Yes, exactly!”
“I think I’m going to like this better. But my oncologist…”
“You can tell him to call me if he feels that strongly about it. He and I can have a chat. But in the meantime, I want you to go home and do the things that you enjoy now that you’re out of the rehab facility. I want you take pictures of your kitty and try to paint something again, okay? Don’t spend any more mental energy on this blood sugar thing.”
V paused before she got up.
“Dr. M… I want you at my funeral. I just wanted you to know that because I know sometimes doctors don’t feel comfortable doing that. But I want you there.”
I smiled to hide the tsunami of guilt overtaking me.
You might not still be around for this, M. Because you’re choosing to abandon this woman for a new job.
“Thanks for the invite, V. I think that’s a first for me. I’ll be there.”
Exiting the room, I let out a big exhale.
A, looked over, concern written on his face.
“You ok, Dr. M?”
As I started to walk down the hall back to the workstations, I answered,
“When I was a resident working with my favourite oncologist, he once told me,
‘Some days you just can’t ride in on a white horse. And sometimes, that’s every day.'”
How’s that for a non-answer for you, A? Master of deflection right here.
I glanced at my watch and cringed.
“Let’s go see the next one… we are now 22 minutes late.”
Time is the currency of life
Where I spent my time today was well worth it – the ability to give back more time and mental energy to someone else’s life by taking away what didn’t serve them was within my power. It’s not something I take lightly.
Sure, I could have continued operating in the machine that medicine is:
- High blood sugar → insulin
- Cancer → chemo/radiation
- Low blood counts → transfusions
No one would fault me for providing good, “gold standard care”.
But people are not flowcharts. This kind of “care” doesn’t always provide real care for our patients. It doesn’t take into account their goals, the way they want to live, the way they want to die.
Sometimes the best medicine is to step back from the hamster wheel and ask ourselves,
“What are we actually doing? What goals are we trying to achieve here?”
What is the point if our actions aren’t actually helping people live the lives they want to live? We just throw on more and more in our crusade to “help people” without looking at the actual impact of the decisions we make to these patients’ daily lives. And, our patients continue on in an effort to please us when it isn’t about the doctors at all.
V should spend the rest of her life the way she wants to – she’s owed that much.
Who am I to demand she spend it any other way?
***
Photo taken of the Columbia River Gorge atop Wind Mountain, WA.
***
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You are a really good doc and an even better person. 🙂
Thanks for the kind words, VBMD 🤗. You’ve just made my day!
+1 on Vagabond’s comment. I remember having a similar – but lower stakes – conversation with the family of a chronically ill, demented, elderly, diabetic patient. His facility was restricting his dessert intake and he was pissed. So I wrote an order: “May have 2 portions of whatever dessert he chooses.” That was literally the only thing I did for him during that consultation, but it made him and his family so happy.
M, if you want to 10x your goodness, consider writing a short note on a greeting card and sending it to your patient prior to leaving, explaining that you’ll miss seeing her and she will be in your thoughts even after you no longer take care of her. Your guilt will be assuaged, she’ll feel cared for, and she will likely feel more loved than abandoned.
The card is a great suggestion, and one I hadn’t considered! I mean, who writes handwritten notes anymore? Definitely not us young folk 😉
I love that I have an endocrinologist’s stamp of approval to ignore the hyperglycemia. I’ve found it is the little things people appreciate the most, things doctors tend to overlook.
What a phenomenal article. I do this frequently as a hospitalist too. Thank you for helping people see this part of practicing medicine.
Thank you for reading! Somewhere along the way, we’ve forgotten that we’re supposed to “Do No Harm”. I’m glad to hear there are others there that remember this edict.
We have a very strong action bias in medicine. We all want to do something and not just stand there when we have all these fancy gizmos and interventions to fool around with.
Antibiotics for colds, albuterol for bronchiolitis. Insulin for sugars that aren’t that high and not going to matter in the long run
To make it worse, add on a status quo effect (continue what you are doing because that’s what you’ve been doing).
Doing what you did was hard and framing it in a positive way was even harder. I would have frozen at her question, eyes darting, palms sweating.
You do right by people.
Thanks Kpeds. I did freeze for a moment.. fortunately the words came to me.
I try to be a human first, doctor second. That’s what patients and their families want, and that’s what they deserve.
You done good doc. We need more humanism in doctoring.
💯 agree. We also need more time scheduled in our day to be human… there’s no way running on a q15 minute schedule, always behind, allows for this type of conversation.
You are the kind of doctor I hope I have when I’m near end of life. There has to be a point where you say do you want to live 2 months more in complete misery or enjoy what is left but with less days to do so. I take path b every time.
As physicians we are almost Pavlovian in nature with stimulus response. We see a lab abnormality and our instinct is to do everything to correct it. Kudos for you looking at the big picture and not focusing on the insignificant.
You definitely earned a place of honor with this particular patient. I doubt many doctors get invited to their patient’s funeral from the patient themselves.
M,
Great Post.
“Had someone already told her the remainder of her life likely measured in months, not several more years? Isn’t it the oncologist’s place to say this to her, not me?”
My experience has been this is always the PCP’s or Hospitalist’s job. Now, when the oncologists actually do it, we probably don’t see those patients, so I am sure they do at times. But more often than not, it is our job, because the oncologists are busy fighting cancer to the death.
What I love about end-of-life medicine is we get to throw the algorithms out the window. We get to practice old-school, human-based medicine, the patient finally is allowed to return to the center of everything. It is such a gift to us and to the patient, if we choose to take advantage of it.
If only more of medicine could be like that….
You mean we don’t actually practice patient centered care? Imagine that.. when it’s plastered everywhere in healthcare system marketing ploys.
Ah, my cynicism is showing, but I’ve grown tired of the never-ending insurance fights that detract from me being able to practice human-based medicine. But, I’ll keep fighting the good fight for now.
Every time I’m faced with this conversation, I always think back to the Ken Murray essay: How Doctors Die. We choose to die differently because we know what medical intervention entails, and we’ve see the traps of doing “something” which don’t ultimately end up in better quality of life.
I’ve been struck by how often patients are just waiting for our cues to tell them they don’t need to keep doing all the things. I wonder if anyone else feels the guilt of keeping people on fruitless regimens when we know these are very low yield, but we keep doing it because at least we’re “doing something”.
We need more docs like you—you’re amazing and have you thought of a hospice pallimed fellowship? 😉 Not that I’m biased or anything….
OMG.. thank you so much for your kind words! It means a lot to me, especially coming from you!
I have thought about doing a palliative fellowship, especially since there is such a need in the pediatrics world. But, the idea of going back into training makes me want to crawl into a cave, never to emerge again!
I’m not saying no… just not right now. We’ll see where the next step in my journey leads me 🤔 In the meantime, I’m more than happy to refer to my very capable and appreciated Palliative/hospice colleagues.
Actually, the fellowship was a lot less painful than I had anticipated. But that’s because I had an amazing Fellowship director who was open to letting me do self-directed learning. I was allowed to design a lot of my rotations to tailor to what I had a hankering to learn about.
Write on my friend, you’ve got writing chops! 🙂
Thanks for the encouragement!