doc w/ Pen

journalist + medical student + artist

Tag: palliative care

May 21, 2018

Among the child believers

Puddles and gray skies seen from the front porch of my lodgings in Naggalama, Uganda, some 40 kilometers northeast of Kampala. My thoughts about the cooling rain — and about issues like childbearing and marriage — are very different from those of many people I met in Uganda, as I discovered during my month-long stay there.

This morning it’s raining in Naggalama, Uganda. It’s been raining a lot the last two weeks, both brief, light showers and heavy deluges. Naggalama is my home base during a month-long Ugandan stay in which I’m visiting a number of rural hospitals as part of research into palliative care.

Around Naggalama, gray skies shroud the blistering, equatorial sun and the rain cools the usually hot air.

For me, it’s a welcome respite from sticky heat. But for the Ugandans I’ve talked to, this is their equivalent of frigid winter. While I walk comfortably in a short-sleeve shirt, I see others shivering in their sweaters and coats. They look at me wide-eyed, and I return the gaze. It’s not a critical look, more one of surprise; shock at my (or their) response to this weather.

Other differences have arisen, some of these more philosophical, cultural, and belief-driven.

A common topic of conversation here is family. Family is of utmost importance in Uganda. The measure of manhood for many here is how many children you’ve fathered. Not so in the United States. It is not surprising, then, that the average number of births per woman in Uganda (5.6) is more than 3 times that of the average woman in the United States (1.8, according to 2016 statistics from the World Bank). Some professionals I’ve spoken to want smaller families. But I’ve seen people in the rural villages with eight, nine, 10, even 11 children, and not always enough food for them all.

It’s hard for me to wrap my head around this practice. I understand the desire to have children but my heart breaks when I see families that have more than they can afford.

Similarly, it’s hard for people here to comprehend the fact that at age 36, I don’t have any children. And I may not have any, ever.

“Don’t you want a child?” many have asked me.

“No,” I’ve replied, simply.

The measure of manhood for many in Uganda is how many children you’ve fathered. Not so in the United States.
“But you will not be complete until you have a baby!” they’ve insisted.

“I don’t feel that way,” I’ve responded. “I find fulfillment in other things in my life.”

My principle always surprises, but the level of others’ incredulity varies.

“Lorien, are you normal?” one person asked me.

It took me a moment to fully understand this question. What did “normal” mean in this context? I realized later that normal might have been a euphemism for being heterosexual. The opposite, “abnormal,” then referring to being homosexual —still a crime in Uganda, although no longer one that gets you the death penalty.

This conversation about having children is inherently circular. I orbit my credo, and they theirs. But our diametric circuits never intersect.

Likewise, being divorced is a strange concept here. Being separated from your spouse, finding a new one, or simply having children with someone to whom you are not married — these things are commonplace. The act of a formal, legal divorce though, is not.

“Don’t you want to find a new husband?” people have asked me.

“I would like to,” I’ve said. “But I need to find the right man. It’s better not to be married than to be married to the wrong person.”

Frequently, after exhausting the topic of divorce, the conversation returns to children.

“But you didn’t even have one child when you were married?”

“No,” I’ve said. “And I’m glad I didn’t. It would be very difficult for me to raise a child on my own.”

Saying those words has always made me imagine what it would be like to raise a child as a single mother while also attending medical school. I shudder. I have the greatest respect for anyone raising children during this journey toward becoming a doctor, single parent or dual household. I find it hard enough to take care of myself, let alone take care of someone who is entirely dependent on me for their every need. I don’t explain all of this, although maybe I should.

“But we women in Uganda often raise our children alone,” one woman told me. “The husband often leaves. If you look at 100 schoolchildren, you would find that for 90 percent of them, the school fees are paid by the mother,” she said.

Puddles and gray skies seen from the front porch of the author’s lodgings in Naggalama, Uganda, some 40 kilometers northeast of Kampala.

Those statistics aren’t backed by research, of course. But I know that while there are many good fathers and husbands here, the suggestion that women are the ones who generally tend to the children has some truth in it. Many women do raise their children alone here. If a woman can’t bear children, or can’t bear any more children, her husband may leave her, I’ve been told time and time again.

And if a woman becomes seriously ill, her husband may also leave her. I’ve seen that firsthand with the palliative care patients we’ve visited in rural villages. From a trip I made to Uganda two years ago, I remember one woman who had terminal cancer. She had 11 children, some of them adults with their own families, but several of them young and still living with her. Her husband had left and found a new wife. He continued to “give care” — provide financial support — for the children while the patient was alive. But she worried about what would happen to her children when she died.

Uganda has no formal state safety net. No foster care, no welfare services, no alimony or child support.

To me, having a child in this environment sounds terrifying. But for many Ugandan women, this situation is all they’ve ever known. What frightens them more is the thought of not bearing any children at all.

At some point, I always steer the conversation toward another topic, knowing that we’ll get nowhere no matter how long we discuss the merits of having (or not having) children.

In the end, all I can hope for is that I’ve done my best to listen and remain open to hearing about and discussing beliefs other than my own. To consider why someone might hold those different beliefs, even as I do the opposite.

I remind myself that cultural exchange isn’t about convincing someone else that your ideas are better. It’s about sharing what you do, finding out what they do, and talking about why. And at the end of the day, doing your best to respect each other.

 

Note: This essay was first published in the online magazine The American, for which I write a monthly column called Bio-Lingual. You can read the original version here.

5 Comments
May 19, 2018

Home again, home again, jiggity-jig

The Emirates Airbus A380, which provided a much more comfortable flight than the domestic ones I’m used to, also harbored a hidden danger, as I discovered when I got home.
Image from Wikipedia.

I’m home.

And it’s good to be home, although the re-entry process hasn’t been without its own challenges.

Jet lag is brutal no matter how you slice it. Not only that. While the Airbus A380 that carried me to JFK was airborne at 35,000 feet, something else was apparently airborne too. As an almost-doctor, I identify my invisible assailant as an aspiring virus, one that must have targeted me while I tossed from side to side in my barely reclining seat. At least I had the aisle.

I’m gradually coming out of the viral haze, and starting to tackle the jet lag.

One thing — one day — at a time. It’s a good mantra for medical school, and for life in general.

I have two weeks left in this four-month research block. Along with continuing to recover my scattered faculties and resetting my sleep schedule, I’ll be entering my data and putting together a “Work in Progress” presentation on what I’ve done so far.

While the trip is fresh in my mind, I’ll also be posting more thoughts, reflections, and photos. I found so much to write about while in Uganda, but simply not enough time to write it all down in the moment. When an essay idea hit, but when I was short on time or energy, I’d hurriedly type a partial draft or even *gasp* an outline. (Normally, I am loathe to write outlines, and have been since I was in sixth grade, when my language arts teacher, Mrs. Piper, forced the cumbersome process on us.) When I didn’t have my laptop handy, I’d scrawl thematic threads in one of the three pocket notebooks I brought with me. A reporter is NEVER without her notebook and her pen, and she always brings spares, just in case. So stay tuned.

This is not the end of my project, though. January and February of 2019, I have two more months fully dedicated to it. At that time, I’ll be more formally analyzing my data, compiling results and conclusions, and writing my report. I’m sure I’ll have more to write about then as well.

Thanks to all of you who have been following and commenting on my jaunts through rural Uganda. As a writer, sharing my experiences is important to me. It’s a creative outlet. It also helps me process and reflect. I find this crucial all the time, perhaps especially so in a foreign country where it can take extra effort to make sense of the world around you.

As they say in Uganda: Weebale. (Thank you.)

2 Comments
May 10, 2018

It takes a village

The colorful interior wall of the hut where I stayed at Sina Village in Mpigi, Uganda. Read on for more details about the hut’s unique construction.

Last Thursday and Friday, I was Gombe Hospital to present my palliative care curriculum. There weren’t any hotels nearby. So Thursday night, I stayed at a place called Sina Village in Mpigi, 30-45 minutes from the hospital. It was intended as just a place to eat and sleep, and maybe write or work if I had some energy. These trips away are exhausting, so I knew I’d crash hard Thursday night.

Staying at Sina Village brought me so many smiles.

But it was so much more. By far my favorite accommodations away from Naggalama, Sina Village was a peaceful, rural respite. And by that, I mean as I sat on the private veranda of my little hut, staring out at the lush, green countryside, I actually felt at peace — something that’s hard to come by anywhere, and almost impossible in New York City. I find the sounds of human activity distracting. Birds, crickets, and cows, on the other hand, somehow allow me space to think. Sonic salve.

It did take me a little while to adjust to the environment, though. I checked in late Thursday morning, and before going to Gombe Hospital for my 2 p.m. presentation, made myself some coffee for a little energy boost. As I was stirring the sugar in, an unfamiliar burst of sound hit me like a wave.

Moooooooooooooooooooo …

The sound didn’t register as anything I’d ever heard while standing in my own bedroom. It sounded like it was coming from my veranda, its mysterious maker on the verge of storming my little hut. I almost dropped my precious cup of coffee.

Regaining my nerves, I cautiously stepped onto the veranda and peered outside.

I’ve been around cows plenty. But standing in my bedroom and hearing one moo? That was a first.

A cow.

A cow? Yes, “mooooo,” of course. I knew the sound, have been around cows plenty and heard their distinctive wail, but have never heard one while standing in my bedroom.

I chuckled at my skittishness — a genetic trait I inherited from my maternal grandmother, I am sure — and at my city slicker reaction.

For the next 24 hours of my stay, plaintive mooooing pealed outside at irregular intervals. At each moo, I smiled.

The bottle hut where I stayed at Sina Village, built with recycled plastic water and soda bottles. The lovely veranda is behind the hut. I will post photos of the view from it soon.

The construction of my “bottle hut,” too, made me smile. “Bottle hut” was literal nomenclature. The building was constructed of plastic water and soda bottles, which had been packed with the ubiquitous, red Ugandan earth and laid like bricks with cement to hold them in place. The picture at the top of this blog post is of my interior wall; below are photos of bottle hut exteriors. The gray-toned hut is where I stayed. The earth-toned hut was down the path from me.

Another aspect of my hut’s exterior made me smile. Each hut at Sina Village had the name of a different African country stenciled onto its metal door. Appropriately, I stayed in “Uganda.”

A view of my bed, and of my “private bathroom.”

I spent an extra $10 for a private bathroom and veranda. “Private bathroom” really means “private toilet.” To wash your hands or take a shower, you have to go outside to the common bathroom facilities. This isn’t what I’m used to, but it did not detract from my stay.

These amazing huts are constructed by local people (see photos below of bottles waiting to be packed with dirt, and a partially constructed hut). Sina Village is not only a cluster of little huts for lodgers. It has a mission — to teach entrepreneurship and job skills. This is much needed in Uganda, where so many people are subsistence farmers, and good jobs are hard (to impossible) to come by.

Bottles for building huts
Partially constructed bottle hut

The place was magical. So were the people. In particular, Flavia, the woman who coordinated my meals and other needs while there, was so kind and welcoming. She also made the best beans and rice I’ve had in Uganda.

If I’m ever in Mpigi again, this is where I will stay.

3 Comments
May 5, 2018

Necessity, that dear old mother

The room where I presented my educational modules at Masaka Hospital in Uganda. Setting up for a technology-heavy presentation in rooms like these can be a challenge.

If I were presenting my educational modules at New York Presbyterian Hospital in New York, I would take several things for granted. Access to a projector, for example. A screen to project images or videos on to. Electrical outlets. Electricity.

In the hospitals here in rural Uganda though, things can be a little more challenging.

At Nakaseke Hospital, for example, the electricity went out during a rainstorm. There went my access to power, and to my projector. Thankfully my laptop and little Bose bluetooth speaker had been charging the whole time. So Howard held up my laptop to show the videos, and I held up the speaker. It wasn’t ideal, but it worked.

Electricity was an issue at Masaka Hospital too, but in a different way. Electrical outlets here are sparse. Many rooms have only one. At Masaka, the only outlet was at the back of the long, narrow room. The projection screen had been set up at the front of the room, near the door. It was hanging from a nail tacked high on the wall. My cords wouldn’t reach to the front of the room where I needed to place my projector, not even with my extension cord, and they didn’t have another one.

Rubber bands connecting the projector screen to the nail underneath the window casing.

So a couple of the nurses who arrived early for my session helped me improvise. We carried the screen over near the outlet and balanced it on three heavy, wood chairs. But there was no nail here to hang the screen from. Not in easy reach, at least. And without something holding the screen up, it simply flopped to the floor.

There was a nail above the window, behind where we were trying to hang the screen. But the nail was obscured by a piece of window moulding. The hanger on the screen wouldn’t reach into the tiny, tight space.

One of the women asked if I had a piece of string. I didn’t have string. What I did have was rubber bands. It took a few tries to figure out how to combine them (think back to physics: in parallel? in series?) to hold up the screen. But we got it to work, as evidenced by the photos here.

My most recent adventure brought me to Gombe Hospital, this past Wednesday and Thursday. When I arrived Wednesday afternoon, I was ushered into the lecture room, and began to set up my equipment.

“Do you have a screen?” I asked the administrator who was helping me. “Or should I project onto the wall?”

I crossed my fingers for a screen, because the wall was a mint green color. Both the patients and the palliative care team in my videos would look permanently seasick if I projected their faces onto this background.

The taped-up paper “screen” at Gombe Hospital.

“We will use the wall,” she said. “I will get some paper.”

She disappeared. A few minutes later she reappeared, with sheets of butcher block paper and masking tape. We taped two of the sheets on the wall, contiguously to make a reasonably sized “screen,” as you can see from the photos.

The first day, participants told me it was hard to see the videos. I realized there was too much sunlight in the room. For Day 2, I closed all the curtains, and it was much better.

Would it have been easier to have projection screens and accessible outlets at every hospital? Of course. But being able to use what you have rather than what you wish you had is an important life skill, wherever you are.

This was good practice for me. It was also a reminder that when put to the test, I readily adapt. That’s a good feeling.

The room where I presented at Gombe Hospital, with the improvised, taped-up paper “screen” at the back of the room.

2 Comments
April 22, 2018

My first palliative care presentations in Uganda: Naggalama and Nakaseke

A group photo from an educational session I led in Nakaseke, Uganda.

Last week, I started pilot testing our curriculum, “Digital Modules for Palliative Care Education in Rural Uganda.” Through these three sessions, the participants have learned from me. And I have certainly learned from them.

Leading a palliative care educational session in Naggalama, Uganda.

I began by presenting the first module, “Basic Communication Skills in Palliative Care,” at my home base, St. Francis Naggalama Hospital. Naggalama is where I came to experience palliative care in Uganda in 2016, and where I am staying in between my forays to other rural locales.

Then I traveled to Nakaseke, a rural hospital about 2.5 hours from Naggalama. I presented the first module again, as well as the second, “Delivering Bad News.” We got lost on the way (PSA: don’t rely on Google maps in rural Uganda). And then the electricity went out during a rainstorm midway through my first presentation (but we adapted; Howard held up my laptop so people could see the videos, since we could no longer project them onto the wall). So in the end everything worked out there, too.

I’m now entering my data from our pre- and post-presentation surveys. And I’m processing the lessons learned from these three sessions. What is clear, though, is that people want this kind of teaching. They struggle with communication skills and delivering bad news just like we do in the United States, but don’t have access to the kind of educational resources we do. And they’re hungry for it.

-reading guide

The participants all wanted to keep the teaching guides that I brought for the sessions. I took this as high praise.

I got a variety of feedback from the three sessions, but one comment was constant. When asked what we could change about our printed teaching guides to make them better, I was told, “Let us keep them!” Suitcase weight limits (2 suitcases per person; 23 kg each) prevented us from bringing enough printed guides for everyone. But the message was clear, and I took it as high praise.

At Nakaseke, at the end of each session, the participants also did this amazing thing to show their appreciation where they clapped several times in unison and then threw out their hands toward me like they were showering me with thanks. It seemed like their version of a standing ovation. Below are still photos from this beautiful gesture.

Apparently, I’m pretty into the material too. I didn’t realize until I saw photos of myself (below) from the sessions how animated I can get.

This week, I travel to Masaka and Kitovu, two other rural sites. I will be presenting four times in two days – a much more grueling schedule. These sessions last 2-3 hours each, and at the end of each I’m exhausted. But after last week’s successes, I know I’m up to the challenge. I know there will be bumps in the road, too (both figurative and literal, given the quality of rural dirt roads here). But I also know it will be worth it – for them, and for me.

April 8, 2018

Boxes, boxes, everywhere

My pile of “savory” snacks to bring to Uganda.

In a peaceful coup, Uganda has assumed control of my tiny, 1-bedroom apartment.

There are boxes everywhere …

A box of food. LOTS of food. I don’t consider myself a picky eater. But on my first trip to Uganda, which lasted 3 weeks (this one is a month), I discovered quickly that I wasn’t getting as much protein as I was used to. We had fruit, wonderful fresh fruit, but almost no vegetables — we can’t eat them unless they’ve been peeled because we can’t drink the water. In general, the diet there is very starch-heavy, which is not what I eat at home. As a result, I was also just eating less than usual. I’ve tried to remedy all that with an assortment of goodies that I’ve pictured here, separated out into “sweet” and “savory” piles on my kitchen table so you can see the variety. Some things are from Trader Joe’s, some from Amazon Pantry, some from my grocery delivery service. When I put everything into those piles, and realized how much I’d bought, I thought I’d gone overboard. I said as much to my research mentor, Dr. Randi Diamond. She didn’t think so. “Bring as much of it as you can,” she told me earlier this week. Luggage weight permitting, I will.

My pile of “sweet” snacks to bring to Uganda.

Not pictured here is the mound of coffee I’ll bring. I survived on tea last time, but it wasn’t pretty. I’m not in any way religious, except perhaps about my morning routine: coarse ground, brewed in a French press for precisely 5 minutes while my ceramic mug heats up too, filled with extra boiling water from my electric kettle. I add a little sugar and half-and-half, take a sip, and then, finally, can really take on the day. After some searching on Amazon, I found a travel French press that I’ve tested and found to pass muster. I’ll have sugar there, but no cream; refrigeration is iffy due to frequent power outages. It may be rough, but I’ll survive.

Boxes of our teaching guides. Twenty-five each of red, black, and blue plastic folders, the kind with metal prongs. One of my trip-preparation tasks has been to put the correct number of sheet protectors into the folders for each of our three modules (11, 10, and 9 sheet protectors, respectively), and then shimmy each printed page into each sheet protector.

One of the 72 little notebooks we’re bringing with us to Uganda, to encourage reflective writing.

A box of notebooks. I mentioned in my last post that in our teaching guides, we include reflection questions to try to get people thinking about how these lessons apply to their own lives and practice. We’re going to encourage discussion of their thoughts, as well as journal writing. So we’re bringing along 72 little notebooks, each with a sticker I’ve designed and stuck on identifying it as part of our program.

A box of surveys. This box holds a 4-inch-high stack of stapled packets, color coded in green and yellow printer paper so we know what’s what.

A box of office supplies. There’s no Amazon Prime in rural Uganda, no Office Depot, no Staples. So we’re bringing along our own stapler, scissors, paper clips, binder clips, pens, tape, a Sharpie, Post-it notes. Some of the items, we know we’ll need. Others we’re not sure of. But we might need them, and there’s no good way to get them in rural Uganda. So into the suitcase they go.

In addition to the boxes, I’ve also got some stacks going, and some piles.

There’s a stack of paperbacks I’m bringing with me, for my downtime. Due to limited suitcase space (and weight), I’m also downloading a bunch of audiobooks onto my phone.

Then there’s the pile of clothes and toiletries that I’ve set out to pack. Bringing everything you need for a month — but not so much that your suitcase goes over the 51-pound weight limit — requires some serious thought. Especially when you need to dress for multiple occasions. I’ll be wearing “professional” clothes (nice pants, a blouse, dress shoes) for the days when we’re out doing our research sessions at the various rural hospitals. I hope to head out with the Palliative Care Outreach Team too, during some of my downtime. On those days, I’ll wear casual clothes and tennis shoes.

I’m constantly stepping over these boxes, stacks, and piles; shifting them from kitchen table to desk to floor and back depending on what I’m doing and where I need space. But it’s a welcome merry-go-round, a constant reminder that exactly five days from the moment I’m typing these words, I’ll be at JFK airport, waiting to board my flight.

I can’t wait.

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April 3, 2018

Back to Uganda …

In less than 2 weeks, I’m headed back to Uganda for another palliative care research project. This picture was taken during my first trip there in July of 2016.

I’ve mentioned in several recent posts that I’m on a four-month research rotation. Then I realized that I haven’t said anything about what I’m actually doing. It’s time to change that.

Before I delve into the details of the project itself, though, I need to provide some background and context so that the project itself makes sense.

Those of you who have been following along for a while may remember that I went to rural Uganda in July of 2016, the summer after my first year in medical school. I went with a palliative care physician from Cornell, Dr. Randi Diamond, to do both clinical and research work, looking (in part) at the understanding palliative care patients there have of their illnesses, and why people present at such late stages of illness to the medical system.

One thing palliative care patients told us during that trip was that they perceived their health care workers to have poor communication skills. And as a result, the patients were distrustful of medical workers, and the health care system as a whole.

In rural Uganda, it’s also important to know that medical workers have limited access to continuing medical education (“CME”). Much of the palliative care CME (and CME in general, for that matter) is Internet-based. As I learned during my first trip there, even in places that have the equipment for Internet, it’s completely unreliable. Not only that, but medical education materials are mostly developed for a Western audience like ours — one with incredible resources. What’s discussed and taught isn’t always relevant to medical workers in rural Africa, who work in a very different environment, as you can see from pictures I’ve included below, taken during my first trip there. (If you want to read in more detail about the hospital environment in Uganda, here is a post I wrote about it in 2016.)

Surgical laundry
OPD (outpatient department).
Emergency room
Rural homes
Adult hospital ward

All of this got Dr. Diamond and me thinking about whether we could do something to help improve communication skills among health care workers in rural Uganda.

As did some things we learned from an organization we’ve now partnered with on this new project, the African Palliative Care Organization (APCA). APCA has developed its own palliative care curriculum for use in Africa, and one of the key competencies is communication. In developing this curriculum, they did a needs assessment, and found “communication” to be one of the gaps in both skills and knowledge in health care workers there. They also found a shortage of culturally appropriate materials for teaching palliative care.

Putting all this together, there is a clear need for culturally appropriate continuing education directed at communication skills.

Both Dr. Diamond and I found ourselves in a unique place to help fill that need. During Dr. Diamond’s last two summer trips to rural Uganda (2016 and 2017), a documentary film crew accompanied her and the local Ugandan palliative care outreach team on home visits to palliative care patients. So she has footage of palliative care taking place in rural Uganda, with local medical workers, that could be used to illustrate best practices.

As part of Cornell’s curriculum, I have 6 months to do full-time research, 4 months now and 2 months at the beginning of 2019. After my first trip to Uganda in 2016, I knew I wanted to work with Dr. Diamond again, and go back to Uganda. From my past life as a textbook editor and freelance writer, I also have experience in developing educational materials.

It was a perfect match.

In less than 2 weeks, we leave for Uganda to pilot test the multimedia educational modules we have developed. There are 3 different modules:

  • Basic Communication Skills in Palliative Care
  • Delivering Bad News
  • Pain Assessment (with a focus on the communication aspect of assessing pain)

Each module includes the video clips I mentioned, and a teaching guide that Dr. Diamond and I wrote. The teaching guides have educational content as well as reflection questions to get people thinking about how what they’re learning applies to their own lives, and their own patients. This kind of “reflective practice” is so important in palliative care (and all of medicine, really). It’s not done much in Uganda, but it’s something that APCA has identified as a goal for integration into medical education there.

To give you an idea of what we’ve created, here is a page from the “Basic Communication Skills in Palliative Care” module:

Here are the basics of our research design:

Hypothesis: Communication training with culturally appropriate modules will enhance health worker confidence in, and knowledge base about, communicating with PC patients.

Methods:

  • Pilot test the modules at 6 different rural sites in Uganda, identified by APCA
    • Hoping for 6-12 participants per site (targeting medical workers such as physicians, nurses, and nurse assistants who interact with palliative care patients)
    • Planning to test 2 of our modules at each site
  • Conduct pre- and post-intervention surveys to assess the effectiveness of the modules
    • Surveys will assess both knowledge base about, and confidence in, palliative care topics and skills
    • Future data analysis will measure whether there is a change in knowledge and/or confidence after the participants complete the module

This project is not just about research, though. It’s also about leaving something behind that people can actually use. At the conclusion of each pilot testing session, we will leave printed copies of our teaching guides, as well as flash drives with the video clips and the teaching guides in PDF form. Hopefully, this strategy resolves the access issue; while Internet is spotty, these rural sites do have computers.

I’m in full trip-prep mode right now: assembling the printed guides, survey packets, mosquito repellent, and lots of protein to take with me for the month I’ll be there (the Ugandan diet is mostly starch based).

I’ll be based at the same place where I stayed during my last trip, St. Francis Naggalama Hospital, working with the wonderful Naggalama Hospital Palliative Care Outreach Team. I will sometimes have Internet access there (hopefully, more often than not). As I do, I will try to post updates on my trip.

5 Comments
July 9, 2017

s/p surgery rotation, week #1

My 6-oz. water bottle, which fits in my white coat pocket, helps keep me hydrated throughout the day. Its small volume keeps me hydrated enough that I don’t get lightheaded, but not so hydrated that I have to go to the bathroom all the time. In surgery, hydration is a delicate balance.

Medical student with a past life history significant for journalism, art, and piano, s/p* starting her surgery rotation 1 week ago, presents with aching feet and legs. The symptoms are most consistent with walking all over the hospital and standing for hours in the OR with inadequate footwear. The student does note that these symptoms have not affected her enthusiasm for the surgery rotation, and that assisting in several surgeries last week has only enhanced her desire to improve her surgical skills. Recommend the student continue to read more about the field of surgery, practice suturing and knot-tying at home, and buy shoes that are more comfortable to stand in for extended periods.

Part of writing up a patient note is including your “Assessment and Plan.” It’s just what it sounds like — a very brief synopsis of the person’s presenting symptoms, what you think the cause is (and why), and what you plan to do about it. The paragraph above is my own Assessment and Plan after 1 week of my surgery clerkship. In other words, the main issue is that my tennis shoes simply aren’t cutting it. Aside from that (and being tired from waking up at 4 a.m. — which is just a given), I’m really enjoying the rotation so far.

Of course, I did learn some lessons from my ob/gyn clerkship that have helped. Those of you who follow my story may remember my near-fainting incident during a C-section earlier this spring (see “Getting back up” from The American, the online magazine I write for every month). After that experience, which I attributed to hunger and dehydration, I now keep quick snacks, as well as an adorable 6-oz. water bottle, in my white coat pockets. They come in handy.

I’ve found several flavors of KIND bars (high protein, lower sugar) that keep me fed when there isn’t time for a real meal. String cheese is great too.

On Friday, for example, we had a lot of cases booked, and in two different rooms — eliminating the room cleaning break in between surgeries that gives you time to get something to eat or drink, and use the bathroom. It was around 4 p.m., and I hadn’t had time for lunch. I was staying late that evening too, and didn’t anticipate time to eat dinner either. At the completion of one case, as everyone readied to go to the next, I approached one of the residents.

“Do I have for a 2-minute snack?” I asked.

She looked intently at me as she quickly thought about my question, knowing we were on a tight schedule.

“Two minutes,” she replied.

Thank heavens for that packet of string cheese in my white coat, which was hanging in the hallway just outside the suite of operating rooms. I ate it in three quick bites, and was indeed back in about two minutes.

The clerkship orientation I mentioned in my last blog post has also come in handy. During a laparoscopic cholecystectomy (gall bladder removal), I got to “drive” the camera for part of the procedure. I also did my best to suture closed one of the port sites used to insert the instruments. Getting that needle just where you want it is harder than it looks though, so the resident had to rescue my effort. But I’m resolved to improve.

Those were things I’d practiced (a little), and expected to try. I didn’t expect to get to help with an ulcer debridement. Debridement is the process of removing dead or damaged tissue from a wound, and in this case it was done to try to help the wound heal. After watching the resident and intern, I was allowed to snip away bits of the yellow, gooey fibrinous exudate that we wanted to eradicate. But even after we cut away as much as we could, there were little bits still stuck down, too small to remove with scissors. So we (that includes me!) used another tool.

Before we started with it, the resident picked up the handheld device, and asked me what I thought it was.

“Well, it looks like a water gun,” I told her.

She told me that’s essentially what it was — a combination water gun and suction device. It sprays a high-powered stream of water into the wound, loosening the remaining gunk, and simultaneously sucks it up.

The resident then pointed to a shield surrounding the nozzle.

“This is to keep us from getting sprayed,” she said. “Don’t spray us.”

Then after a brief demonstration, it was my turn. I considered my time with the fancy water pistol a full success: I helped clean up the dead tissue, and I avoided spraying my resident and intern in the face. Even with our eye protection, that would have been … less than ideal, to say the least.

The ulcer debridement was a procedure I had really wanted to scrub in for. Having talked so much with my mom, a hospice and palliative care nurse, about wound care, I wanted to see it in action.

Along those same lines, it was interesting for me to see bedside wound care too. Several times last week, I went along with an intern to change a dressing. The intern did most of the medical work. My main role was to distract the patient from the pain, inevitable in spite of pre-medication. So I put my palliative care hat on, glad to help ease a patient through this temporary, painful event.

More than once, an intern has apologized to me that there isn’t anything “interesting” going on for us to see. The intern was referring to the fact that some days, there are few, if any surgeries going on while us medical students are there. On the other hand, there are also days when we’re booked back-to-back, plus emergency add-on procedures. You simply never know. My response is always that (of course!) while I’m excited to scrub in for surgeries, I’m also just glad to be part of the team, helping with the little things like gathering supplies for a bedside dressing change or procedure.

It’s all part of the learning process. And that’s why I’m here.

 

*s/p, which stands for “status/post,” essentials means “after.” It’s often used in reference to procedures, such as surgeries. For example, a patient who had their gall bladder taken out 5 days ago would be referenced to as “s/p cholecystectomy 5 days ago.”

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May 22, 2017

Presenting a poster, and reigniting my passion

Posing with the poster I presented at the American Geriatrics Society’s annual meeting this past week in San Antonio.

I spent the last few days in San Antonio at the American Geriatrics Society’s annual meeting. I wasn’t just an attendee — I also presented a poster on the palliative care research I did last summer in Uganda. It was a wonderful experience to go through the process of writing and submitting an abstract, creating a poster, and then presenting my work to other medical practitioners.

Talking with people about my research, getting feedback on what we’d done in the past and hope to accomplish in the future, also reignited my passion for the project. I’m ready to dive back in and use the information we learned last summer to try to make positive change. I won’t have to wait long to do that. I will be continuing my work in Uganda during my four-month “Area of Concentration” research block next year.

The work we did last summer was a pilot project that aimed to better understand why some patients in rural Uganda do not seek medical treatment until their condition has progressed to being terminal, and therefore present for palliative care. We also hoped to learn what the patients understand about their illnesses, and what both patients and medical workers see as barriers to seeking medical care. Here is a link to a larger image of the poster I presented, detailing our results and conclusions: Understanding Illness Perceptions and Care-seeking behavior in Older, Palliative Care Patients in Rural Uganda.

One key thing we learned last summer is that poor communication from providers to patients is a factor that affects whether people seek medical care. Patients don’t trust the medical establishment because they feel belittled rather than heard or understood. So they are discouraged from seeking medical care from physicians. Instead, the patients turn to traditional healers who actually listen to their concerns. This is a problem when a patient has breast cancer, for example, and months or years of using ineffective herbal treatments means that her cancer progresses beyond the point where it can be cured. So my project for next year is to develop a multimedia educational module to teach better communication skills to medical workers. Specifically, the module will address the topic of how to deliver bad news to patients, such as a frightening diagnosis. We’ll be using film footage that was taken during palliative care home visits in rural Uganda last summer. The project has yet to be formally approved by my research committee, but so far I’ve gotten very positive initial feedback. I look forward to sharing my progress as this new project moves forward.

It truly takes a village to make a project like this possible. It’s impossible to mention everyone who played a part, but these are the key players. Thanks to my research mentor, Dr. Randi Diamond, for her hard work, dedication, and ongoing support. I also want to thank Weill Cornell’s Division of Geriatrics and Palliative Medicine for sponsoring my trip to the conference, as well as my initial research funding from the Howard Olian Endowed Scholarship in Geriatric Medicine. I also want to acknowledge those who worked with me on the project last summer. From New York: Dr. Howard Eison, Dr. Jemella Raymore, Dr. Carol Capello, Dr. Veronica LoFaso, Dr. Cary Reid, Dr. Ron Adelman, Dr. Kelly Trevino, Lauren Meador, Allison Maritza Lasky, and my fellow MSTAR/Adelman scholars. From Uganda: the St. Francis Naggalama Hospital administration, physicians, and staff; and the Naggalama Hospital Palliative Care Outreach Team.

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December 3, 2016

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.