And then, on a serious note…

Posted by on October 17, 2012

Today isn’t going to be a fun blog post (and, after writing it, I realize that it’s a very long post). A lot’s happened since I last wrote; I felt my very first “earthquake” (in quotes because it was more of a tremble), I visited the zoo on the top of that hill I always talk about, and I visited a Mapuche community (the Mapuche are the most significant indigenous community still alive in Chile).

Yet as awesome as the past week has been, I’m not going to write about any of that. I’m going to write about what I did today.

For those of you who don’t know, I am pre-med at Wofford. As an aspiring physician, I picked the perfect place to study abroad. The IES program in Santiago has a Clinical Observation Internship, in which a group of us spends the first half of the semester learning about the healthcare system in Chile and the second half visiting local clinics and hospitals to observe the system in action. So far, it’s been really interesting, and I could write pages on the healthcare system in Chile (which is funny, because I sure couldn’t do that for the healthcare system in the United States…and by funny I mean sad…and by sad I mean I have a lot to learn before I actually become a doctor). But today was a “system in action” day, and we spent our morning visiting La Clínica Familia, a palliative care hospital in Santiago.

As a palliative care clinic, the hospital cares for terminally ill patients, the majority of whom have either cancer or HIV/AIDS (although there was one woman with Alzheimer’s there as well). As someone who is studying to be a pediatrician, I’ve always thought of being a doctor as making sick people better—to be told, on the first real day of observation, that every patient I was to see would soon die came as entirely too much of a shock to me.

The first thing we saw when we drove up to the clinic was the enormous bed of roses. It’s spring in Chile, and today was one of the nicest days I’ve spent here. The roses were in full bloom, in every color you could imagine; it was breathtaking. As we parked, I looked over to a magnificent view of the cordillera (the mountain range) under the bluest sky I can remember seeing. For a place that was sure to house such sadness, it sure seemed beautiful.

The first place we visited on the tour was the capilla (chapel). Although the chapel is nondenominational, Chile is a predominantly Catholic country, and the chapel was adorned as such. However, the woman in charge of the clinic (or at least in charge of us) pointed out two rather special features to us—the figures of Jesus and the ring of ribbons. There were two notable figures of Jesus: outside, above the entrance to the chapel, and inside, above the altar. The one outside was the crucified Jesus—skinny, haggard, and in pain. The one inside was the resurrected Jesus—adorned in white, smiling, and peaceful. The woman explained to us that the Jesus outside is how a lot of patients enter the chapel (and the clinic): tired, weary, and hurting. The Jesus inside the chapel signifies the peace that can be found in the chapel and at the clinic. The clinic focuses healing not the body, but the soul. The patients that end up at the clinic are past the power of medicine, so the clinic prepares them for the reality of what is to come, helps them make peace with themselves and their fate, and brings their families to that same peace so that the healing is shared among those that are left behind. The Jesus above the altar represents the healing experienced at the clinic.

And then, after showing us the Jesus figures, the woman lifted up a circular rack (like the ones you used to hide in at the clothes store, before your mom pulled you out by your ears and told you to behave, but smaller) with dozens, hundreds, of yellow ribbons hanging from it. Each ribbon, she explained carefully, represented a patient who had passed away at the clinic. I was in the back of the chapel, so I couldn’t see it too well, but she told us that each one had a name on it. And with that sobering thought in mind, we said a Padre Nuestro (Our Father) together and exited the chapel.

That’s when we headed up to the floor with the patients. We passed a sign that listed the basic rules for those who work at and visit the clinic. There were the basic rules: respecting the patients, not using cell phones, and washing hands. The last one, however, stuck out to me. It reminds everyone that the main goal of the clinic is what every worker and volunteer is supposed to promote: el amor (love) as the best and primary form of medicine.

On the floor, there were about ten rooms, each with two or three beds, and each named after a Catholic saint. Not every bed was occupied, and there were even empty rooms. But what I remember most is the smell that instantly washed over us when we walked in. I remembered the last time I’d been in the visiting quarters of a hospital – the last time I saw my grandfather. I pushed that thought out of my mind as we were ushered into a waiting room that I assume is for families waiting to see loved ones. We were all kind of uncomfortable—I can’t speak for the others, but if they were anything like me, they were still thinking about that ring of yellow ribbons.

Nicolás, the nursing student from the university who was in charge of us (God bless him), introduced us to other nursing students, who were doing their internships at the clinic. They explained that what they liked best about working there was the opportunity to really connect with the patients and help them at a very difficult time. They told us how rewarding it is to help patients come to terms with their illnesses and reach a state of peace. After their explanation, we split up into groups and began visiting patients.

I was horrified. The people we visited were really, really sick…sicker than I’d imagined. And what really got me was that there wasn’t going to be any improvement for them. We met patients with terminal cancer, PML (a brain disease that arises when HIV/AIDS is left untreated for years), and various other terminal conditions. As we went around, I noticed the signs on the doors that indicated a schedule for moving patients (the nurses have to help patients change position so that they don’t develop ulcers and sores from lying in the same position all day), the supply closets that contained packs of adult diapers, and the thousands upon thousands of pain medications to make the process of dying a little easier. I saw patients that couldn’t speak, patients who were so thin that I was afraid that their bones would snap right in front of me, and patients who appeared to be wasting away in the beds in front of me.

We were instructed to walk in and introduce ourselves to the patients in the beds. As we all went through and said the usual (name, where in the US we’re from, why we’re in Chile), I couldn’t help but think, “Why?” I doubted any of these patients cared that I’m from Charleston, SC, or that I study biology at Wofford College. Why are we bothering them during a time when they’d probably rather be left alone? If I were in the bed, I’d demand a curtain and a television and chase all the gringos out of the room. (This was also the time that I figured out that I’m going to end up being the crabby old lady in the nursing home that yells at the candy stripers.) These people were incredibly sick, and I felt like a huge, awkward nuisance, intruding on what should have been a private time.

I’ve been very lucky in my life. I have a very limited experience with death. I lost my grandfather two and a half years ago, and even though I’ve thought about him every day since, I was fortunate in that I never saw him like I saw the patients today. I have only memories of him as being strong, funny, and hopeful. I am so blessed to have a family as healthy as mine is; however, that very luck made it so that today came as a huge shock. I actually had to excuse myself to go sit in the bathroom and pull myself together (I don’t think I’d ever seen my face that white before). I sat down, said a quick prayer for strength, and walked back out.

I came back and got ready to go into the next patient’s room when Nicolás pulled me aside to talk to me. He asked me if I was okay, and I responded that of course I was. He gave me a look, and I gave up. I said, “It’s just that I could never do this. It’s sad. It’s difficult. I can barely be here observing. But I’m fine. I’ll go in with everyone else.” He looked at me again and shook his head. “No, come with me.”

“I know this is hard, but you can’t understand how good and necessary it is until you talk to some more patients. I know how many yellow ribbons you saw, but you have to recognize the good of this place. Death is a part of life, of every life. This center helps people prepare for that stage in a way that brings them both grace and dignity.”

He brought me to the other side of the floor, to a room with a single bed in it. A woman in a pink nightgown was sitting up in bed, watching TV and finishing some meal or other. She had no hair, and I assumed that she had cancer. Nicolás and I walked in to talk to her. He introduced himself, and made me do the same. She told us her name was Julia. I noticed she didn’t speak very loudly, so I tried to pay attention. From what I understood, she was diagnosed with breast cancer, which then spread in her chest to her lungs and then to her vocal cords (thus the difficulty in talking). We asked her a little bit about her life. She told me she has two children, a 22 year old and a 24 year old. When we asked about her grandson, she responded that he’s a bandido (a rascal, scamp—or, as my grandma would say, a holy terror). She was smiling and seemed to be proud to talk about her family. But the most interesting thing she said came after Nicolás asked her if there was anything else she’d like to share.

“Positivity. You have to stay positive. I fought a war with this cancer, and I’ve stayed strong. I haven’t lost as long as I stay positive.”

Nicolás looked at me to make sure I got it, and said, “Thank you, ma’am. It was nice meeting you, and thank you so much for talking to us.” Then he brought me out of the room and gave me yet another look, this one as if to say, “Now do you see?”

Up until then, I had been walking around the hospital seeing death everywhere, and this woman, who actually WAS dying, was seeing nothing but life. It was humbling, for sure, but even more than that, it helped me see the clinic (and palliative care in general) in a whole new way.

The next patient we visited was a man with an enormous tumor on the side of his face. It was covered by a bandage, but it had distorted the entirety of his face, and made speech difficult for him. Yet when I walked in with four other girls (and Nicolás, of course…I kind of became his fangirl after that), he told us all about his life. He is from the coastal city of Valparaíso, Chile, but spent years and years traveling throughout Europe and Asia—Sweden, Egypt, and Russia were the three places I remember him saying, but he listed at least ten more. He told us a few stories about his travels, and then he thanked us for listening to him.

Maybe we weren’t annoying the patients. Maybe they were excited for the chance to share a little bit about their lives, even if it was with complete strangers (and foreigners, to boot). Nicolás told us that talking and sharing can be very important in the process of preparing for the end. I don’t know much about that, but, in any case, it seemed like the patients enjoyed it.

We even got to see a therapy session. There was a young man with HIV/AIDS (only 30 years old) who, when Nicolás met him, only weighed 29 kilograms (64 pounds) and couldn’t move, not even to change position in his hospital bed. When we saw him today, he was moving his own wheelchair to the therapy room, and weighed closer to 100 pounds (still not much, but what an improvement!). In the therapy session, the physical therapist helped him walk a short distance, turn around, and walk back. He was told to sit on a giant ball and balance himself on a beam with first one hand, then the other. For the whole time I was at the clinic, he didn’t say a word, but I saw the faintest trace of a smile as he managed to balance without either hand for a couple seconds (to the delight of the therapist). It was small, but I suppose that improvement is improvement, even in the worst conditions. Nicolás told us that if the patients improve enough, they can be moved to other types of care facilities that aren’t necessarily palliative. It was nice to end the visit to the floor on a hopeful note…I’ll never forget the half-smile on John’s face.

(Also weird. The song “Highway to Hell” was playing during the therapy session. I realize that most people in the clinic don’t understand the English lyrics and that it is a pretty good song to get yourself fired up, but…really?)

That’s about all I have for the patient floor. After that, we walked around the grounds for a bit. The clinic has facilities where families of patients can stay, to be closer to their loved ones. The houses are beautiful and are surrounded by the same roses that enchanted me at the beginning of the visit. I even saw a little jungle gym (for Julia’s bandido and other grandchildren, I’m assuming). A little further down were the rooms where the social workers and counselors meet with the families. It really felt like, in all aspects, the clinic cares for the patients and their families. Even the grounds of the center seem to bring tranquility.

I don’t know what I was expecting when I got in the van to go to a clinic for terminal patients. I don’t even know what I’m feeling about it now. I’m still trying to sort through everything I saw today. I still don’t know if I could ever work in palliative care, but I left La Clínica Familia today with a greater appreciation for the people who do. I’m coming to realize that palliative care is not about death; it’s about celebrating life in all its stages and bringing dignity to people at every stage of life.

I think before, I was afraid of palliative care because I thought it would be sad to work so closely with death. Now, I’m thinking that it’s not a sadness thing; it’s a strength thing. I feel like it would take a lot of strength to see so many people in so much pain and recognize the peace within the pain and the joy beyond the suffering. I feel like it would take a lot of courage to get up, come back, and do that every day. I’m not sure I have that strength or that courage.

I know this blog is supposed to be about my experiences abroad and not about life and death and faith. But every day I’m here, I’m learning something, something that helps me see the world a bit differently. And what’s really amazing is that it’s the same in the United States. People get sick and die everywhere, and it’s awful and sad everywhere; that’s what makes palliative care so necessary. The father of two of my swim team girls is a hospice/palliative care doctor, and I’ve always kind of wondered why he loves his job so much. I don’t understand how he’s able to come to swim meets and laugh and joke around with me and the other coaches when, at work, he deals with death every day. I think maybe he’s come to understand something that I’m still struggling with…exactly what that is, I’m not sure (as I said, I’m still struggling with it).

Maybe it’s something about understanding that life is to be appreciated and lived to the fullest in every moment. Maybe it’s having the firm belief that there is something more after our time on Earth. Maybe it’s just knowing how profoundly that type of work can touch a person’s life. I’m not sure. All I know is that the work done by both him and the people I met today (and caregivers at other palliative care facilities) is both necessary and utterly amazing. They are necessary and utterly amazing.

And my last thought for the day? The world is lucky to have people like them.

One Response to And then, on a serious note…

  1. Jill

    You are an amazing person! I loved reading this and thank you for sharing! You will be a great doctor and your patients will be lucky to have you and the wonderful care you will give them!!