doc w/ Pen

journalist + medical student + artist

Tag: pain

End-of-life ethics

Medical school definitely has its drudgery. Thankfully there are also moments of beauty — interactions and experiences that remind me why I’m here. Moments that remind me that I am in the right place, doing the right thing. This week I had one of those moments.

It was after a morning small group ethics discussion. We’d been talking about end-of-life issues: palliative care, terminal sedation, physician-assisted death, and euthanasia. Following the session, a classmate from my group stopped me in the hall. She’s someone I think highly of, but don’t know well on a personal level. We travel in different social circles. So I was curious why she wanted to talk to me. I’ll paraphrase part of our conversation. She told me:

If any of my loved ones ever needs palliative care, I’m going to look you up and find out where you’re practicing. I want you to be their doctor. I can tell you have a heart for this.

Her words touched me profoundly. The fact that my passion for palliative care emerged — at least to this particular classmate — even in our rather contentious 50-minute discussion made my day.

It was a contentious discussion, though. Fervent, ethical arguments for and against physician involvement in the death of suffering patients dominated our debate. I do have strong opinions on this hot-button end-of-life issue, and others. Midway through the hour though, I brought up a perspective I believed was missing from the dialogue. Long before you arrive at a conversation about physician-assisted death, you do everything you can to help your terminally ill patient find meaning in the last days, weeks, or months of life. You strive to relieve both physical and emotional pain and suffering with an interdisciplinary approach. You do that through the cooperation of doctors, nurses, social workers, psychologists, chaplains, art therapists, massage therapists, music therapists, and other medical professionals, each of whom works a little different magic. You involve the family in this process too.

It is natural for a patient and their family to feel sad when faced with a life-limiting illness. But they don’t have to feel hopeless, or depressed. There is meaning and purpose to be found at the end of life. I’ve seen it, both here at the hospital in New York City, and during the home visits I did in rural Uganda. And that’s where you go first — in search of comfort and purpose (perhaps a redefined purpose). When those efforts fail, only then do I think it’s appropriate to have a conversation about physician-assisted death or terminal sedation.

I do believe in a patient’s right to physician-assisted death — with proper safeguards and regulations to prevent misuse and abuse. I do belive that terminally ill patients who have capacity deserve the autonomy to leave the world on their own terms. But I also do believe that is an option of last resort, when the suffering has become intractable and untreatable.

I have a long way to go before I’m a practicing physician. Whether I actually pursue palliative care, who knows. Whatever specialty I enter though, I will work with patients who are in pain, and who are dying. Belief in the power of hope and palliation will serve me and my patients well regardless of what specialty I choose. That these core beliefs of mine are evident to others — this tells me I’m on the right track to becoming the kind of doctor I want to be.

A computer lesson on pain control

Our required EMR training includes a 10-minute lesson on how to order PCAs.

Our required EMR training includes a 10-minute lesson on how to order PCAs.

$560 – $635 billion.

That’s the estimated annual cost of pain, according to a 2011 Institute of Medicine study called Relieving Pain in America.

Having spent this past summer immersed in the world of palliative care, I’ve seen how pain carries a heavy personal cost too. I’ve also seen the remarkable difference it makes in a person’s life when that pain is diminished or eliminated.

So as I continued to work on my mandated electronic medical records training last night, I was pleased to see a 10-minute module on how to order patient-controlled analgesia (PCA). PCA involves a computerized pump connected to the patient’s IV line. With PCA, it’s the patient who controls the amount of pain medication they receive (with a limit established by the prescribing physician). PCA is not appropriate in all situations, but it’s one more option in the doctor’s pain management armamentarium.

I don’t imagine PCA ordering is something medical students actually deal with, but I’m glad the module was there — if only to remind us all how important pain management is.

Tonsillectomy Tales

One surgery, 2 ambulance rides, 2 hospitals, 7 nurses, 8 ENTs (2 attendings and 6 residents), 40 hours in the hospital, and countless scoops of ice cream later, I’m feeling much better. But it’s been a nightmare. If you still have your tonsils, keep them if you can. For an adult, a tonsillectomy is serious business.

Losing mine was inevitable. Since having mono in March (read that story here), my tonsils remained very enlarged, to the point where swallowing was annoying. Add to that recurrent throat infections, and they were seriously interfering with my quality of life. So my ENT agreed that removing them was the way to go.

The surgery was brief, the procedure itself apparently lasting only about 15 minutes. Cut, cut, cauterize. No sutures, just a torched throat. I actually felt OK that night. Third day post-op was the worst. Swallowing ground glass would have felt better than every gulp I took. The thing about a tonsillectomy, unlike most surgeries, is that you can’t rest the affected area.

In the midst of the pain, I developed a bad cold. So along with pain medication, I was taking an antihistamine, a decongestant, and cough medicine. To prevent bleeding after the surgery, you’re supposed to avoid coughing or clearing your throat after the surgery. Needless to say, I was a total zombie. Right before I had my surgery, the ENT resident said to me, “I hope you have a lot of good books to read and movies to watch.” Yeah, right. I was lucky if I got out of bed.

Slowly, things started to improve. Minutely, but noticeably. Then nine days post-op, 7 p.m. to be precise, I started coughing up blood. First phlegm with blood, then just … blood. I’m not normally one to panic, but blood isn’t supposed to come out of your mouth in quarter-cupfuls at a time. Naturally, I called my dad, who lives not far away. Dads—especially dads who are doctors—can make everything right. Right?

“I’m coughing up blood,” I told him. “Can you take me to the ER?”

“If you are coughing up that much blood, you need to call 911,” he said. “They can get you there a lot faster than I can.”

So, somewhat reluctantly, I dialed 911. Put my shoes on, got my purse and phone—somehow I thought to bring my phone charger too—and went outside to wait for the ambulance. It came, flashing lights, sirens, handsome paramedics and all. I stepped up into the ambulance (no stretcher? what about the stretcher?) and off we went to the community hospital. In better times, I could walk there in 15 minutes. Clearly, these were not better times.

The benefit to arriving at the ER in an ambulance, I suppose, is that you jump the queue. Immediately to a curtained-off gurney I went. Vitals taken, throat examed, IV fluids started. My dad arrived soon after to keep me company. He had left a message for my mom; I’m living with her, and she had just left for a church function before I started coughing up the blood. She called back while we were sitting there.

“Yeah, I’m here with Lorien,” my dad told my mom nonchalantly. “She’s covered in blood head to toe. There are these cool blood bubbles coming out of her mouth and nose.”

Laughing after a tonsillectomy is really painful, so I was trying not to—he was totally egging my mom on, as he has done since I can remember. I later found out that she believed him. I guess I can understand why—when she left I was fine, then she gets a voicemail that I’m in an ambulance and on my way to the hospital. She’s my mom. She gave birth to me. Of course she was traumatized.

“I was very fragile!” she told me later.

The ER doctor looked at my throat. She didn’t see any blood or evidence of bleeding. In fact, the bleeding had mostly stopped at that point. She called the on-call ENT doctor at the main hospital in the Chicago. They wanted to see me—at the Chicago hospital. Hence ambulance ride #2. No flashing lights or sirens this time, although I did get a stretcher. About time.

Déjà vu. This was exactly what happened when I got mono. Went to community hospital ER. ENT docs in Chicago wanted to see me. Ambulance ride to main hospital. I didn’t complain, though. Who knew if the bleeding would start again. I certainly wasn’t taking any chances.

Once in the Chicago ER, more IV fluids, more vitals, more doctors and nurses asking questions—not fun, since talking after a tonsillectomy is painful. Once the flurry calmed down, I looked around the room. The wall clock said 2:05. I did a double take. I knew it was closer to 10 p.m. Then I realized I was in the same room as when I had mono. The same broken clock, still broken. Déjà vu indeed.

Observation for 24 hours, and NPO (no food or drink) for the time being. That was the ENT verdict. So I tried to get comfortable. Not easy when you’re hooked up to an IV, a pulse oximeter, and a monitor. Not to mention that with all the IV fluids I was getting, I had to go to the bathroom every hour. At least, that’s how it seemed. But since I was so tied up, I had to call my nurse to unhook me from everything, and then hook me back up. For a person as self-sufficient as I am, being that helpless and needy was very hard to accept. I had no choice.

Since I couldn’t take pills, they gave me morphine via IV. I got four milligrams every four hours, which my hospice mom tells me is a low dose. Even so, it was … interesting. Almost instantly, my whole body felt heavy, invisibly weighed down. The morphine did a little, though not much, for my pain. At least it helped me sleep.

As this was a dedicated observation room, not a regular ER room, it had a normal hospital bed as opposed to a gurney. So I was much more comfortable. It also had a TV, although the first thing I did when the paramedics brought me in was to turn it off. I didn’t want to watch the news, the weather, sitcom reruns, or bad talk shows. I wanted to sleep. As I said, the morphine helped, some. But I quickly realized—or remembered, from last time—that the hospital is no place for resting. It is, in fact, the worst place for a sick person to be. Electronic monitors chirping constantly, people talking, walking by my room. At least I had a sliding glass door, which they allowed me to keep shut, and a curtain. That helped. The worst was the number of people who kept wandering in: doctors, nurses, social workers, volunteers. All had what I’m sure they considered to be important questions. But many of them seemed irrelevant to me at the time.

“Do you have stairs at your home?” was the worst question I got.

Say what? I had a tonsillectomy, not a hip or knee replacement. There’s nothing wrong with my legs. What does it matter that I live on the second floor? I understand that they ask everyone the same questions. But it was overwhelming, especially since my throat hurt so much.

My own ENT—the one who operated on me a week and a half prior—came to see me the next afternoon. Apparently, bleeding around day nine is not uncommon, he said. The scabs on the throat are starting to fall off, and sometimes healthy tissue is torn off too. My throat looked OK, he added. But since my pain was still uncontrolled, he suggested staying another night. I remained skittish, so I agreed. I would get a regular room on the floor soon.

My mom came to visit me that afternoon after my ENT left. It was a nice diversion, after trying somewhat unsuccessfully to sleep all day. At that point, I was on clear liquids (exciting!) so I feasted on green jello and apple juice. Considering how hungry I was, it actually wasn’t bad.

After she left, they took me to a regular room. More nurses, but no doctors this time, more questions. I discovered that they monitored different things on the floor than in the ER. My urine output, for one—what goes in must come out. They checked me for skin breakdown, and I had to wear inflating sleeves on my lower legs to prevent deep vein thrombosis (blood clots in my legs). My wonderful nurse apologized for the hassle.

“This is really for older people,” she said. “But we have to do it for everyone.”

Another night of morphine, in-and-out sleeping, hooking and unhooking to go to the bathroom. The next morning, I was more than ready to leave, regardless of my pain. Around 10 a.m., I unceremoniously took a cab home. And then I took a long nap.

I spent the weekend recovering from my hospital stay. I’m back to work, starting with half days for this week. I’m better, especially on the pain front, but I still don’t feel myself.

Like I said. If you still have your tonsils, do yourself a favor and keep them.

 

Author’s note: Those 40 hours were awful. But I want to thank everyone who cared for me at the two hospitals where I stayed: the doctors, nurses, and other staff. Especially the nurses. Without their help, those 40 hours would have been much, much worse.