Monday, September 20, 2010

Revisiting my Dominican ghosts

Almost exactly one year ago I met a patient in the medical ICU at Columbia who has stayed vividly in my thoughts throughout the ensuing months. She was an older Dominican woman, in her eighties, diagnosed recently with a rare inflammatory disease causing shortness of breath and nerve damage in both legs. Before this bizarre disease had come her way, she had been an active and vibrant woman, with very strong ties to her family including children and grandchildren in the United States and in the DR. She was now much more limited in her independence and mobility, though her mind was not at all touched by the disease. I didn’t know this when I first met her, only later. When I first saw her, she was a frail, tiny figure, intubated, illuminated by the garish lights of the ICU, surrounded by tubes, lines and beeping machines, with, every moment, at least two members of her family keeping watch.

At the time, we thought that she either had an infection or this was a rapid progression of her inflammatory disease. We treated her with antibiotics and kept her oxygen levels up with the use of the ventilator. After a few days, she seemed to be improving and we began to talk about removing the breathing tube. As we went through all the necessary protocols to ensure that it was safe to take her off the ventilator, her nurses approached us and told us that they were getting the feeling from her that she did not want to be on the ventilator. At this point, I’m not sure anyone had the chance to ask her if she wanted to be on a ventilator: her family had no memory of talking with her or her doctors about her wishes and when she arrived at the emergency room this time, she had been too sick to answer any questions. Her family had made the decision that we should do everything to help her recover.

Now that she was a bit more awake, she seemed to be trying her best to communicate that she wanted the tube out as soon as possible. She passed all the necessary tests for a safe extubation, but we all knew there wasn’t a 100% guarantee that she would do well. We prepared to take out the breathing tube and initiate a conversation with her about whether she would want the tube again if she got worse. The answer we got was not in the least equivocal. She did not ever want to be intubated again. Even in the haze of the ICU and her recent overwhelming illness, there was no hesitation in her choice. She contemplated the question carefully, silently, and then told us no.

Sadly, the relevance of her answer became almost immediately apparent as her shortness of breath quickly returned and worsened. Immediately, her family, led by her daughter, intervened. Obviously, we had made

a mistake when we took her off the machine. Now, we needed to put her back on. I told them that we had to follow her wishes above all else. Her family then flocked to her bedside to try to convince her to change her mind, to convince me that she didn’t know what she was saying, or to do anything to get us to intervene. At this point, I remember worrying that she would change her mind under all that pressure and then I wouldn’t know what to do. I was even worrying that her daughter might just tell me she had changed her mind when she hadn’t and with all that Spanish flying over the bed between her and her

family, I might miss whether this was true.

But the patient was steadfast. She remained silent for long periods of time, thinking calmly despite her shallow breaths. I asked her again, did she understand that if she didn’t have the breathing tube again, she would likely die? She answered me the same as before: that breathing tube is the worst thing that ever happened to me. In the end, after almost 24 hours of attempts to make her better without the ventilator, we started a morphine drip and let her rest.

She stayed in the ICU on the morphine drip for almost a week before she died. Her family remained completely furious with us this entire time, constantly attempting to renegotiate her care with less morphine and more antibiotics and transfusions and on and on and on.

An unexpected question

One late night during this last week, her daughter called me into her room to discuss a transfusion that I thought was futile and she felt was necessary. As had been the case for days, the tension was palpable in the room before either of us spoke.

When the patient’s daughter finally spoke, she asked a surprising question of me. “Doctor, do you plan to work in the developing world?” I was taken aback for a second: how did she know that I wanted to work abroad? Why did this seem to make her more angry?

“I do,” I answered tentatively, “I worked in South Africa for a few years and would love to continue that work in the future.”

This was obviously not the answer she was expecting and I realized her initial question had been rhetorical. She assumed since I was working now among the cacophony of the ICU that it was not possible I would ever want to work anywhere else. Now this unexpected conversation was on unexpected ground for us both.

The daughter continued, “Do you think they would do this to her in our country?” At least this time I recognized that she did not expect me to answer. “They would not do this at home. They would not treat her like this.” My mind was spinning with all the possible things she could be talking about: the ventilator, the morphine drip, the transfusions, the young and petrified doctors like me manning the controls at night.

I don’t remember much of the details of what came next. I do remember that I said I was sorry, as I always did in conversations with her, sorry that she was in so much pain, that she was so unhappy with the way that we cared for her mother. I also tried to address her question delicately, knowing that I was very unlikely that I could do anything to make her feel better. “From what I’ve seen in the developing world,” I said tentatively, “I don’t think she would have been better cared for at home. I think she would have been asked to pay before receiving any care and I think that is not at all better than what we have here.”

Pretty quickly, she gave up on the developing world line of inquiry, but she clearly did not feel any better and the end result of the conversation was that I acquiesced to ordering the transfusion.

On shaky ground with myself

This conversation and all the other interactions I had with this patient and her family made me realize something incredibly powerful but also confusing: I do firmly believe in our protocol for making end of life decisions and the ethical principles behind it. But, do I think this is the only way of making this decision, the clear choice for every culture, every medical system? Absolutely not.

It was clear in the eyes of this patient’s daughter that what we were doing was not at all the obvious way to do things. Faced with the loss of her mother, there was basically nothing I could say to convince her that our value system— autonomy, free will, the importance of the individual—was fair to her mother or her family as a whole.

Since that time, I have been haunted by the idea that my lack of understanding of Dominican culture resulted in me somehow failing this family when I could have helped them. I was reminded of this case when I first visited Santiago and saw several severely ill older patients who seemed to be receiving what I would consider rather aggressive care, especially when it came to feeding tubes. I began to wonder if attitudes towards end of life care were so different in the Dominican Republic, just as this patient’s daughter had told me that late night in the ICU.

My very own panel of experts

I had the chance this past week to address my nagging fears. I prepared a teaching conference for the geriatrics residents and decided to present this patient’s case and get their opinion on how she might have been cared for differently in the DR.

In the days leading up to the presentation, I got a bit of cold feet about the questions I was getting ready to ask. Given the financial situation of most of the patients the residents were caring for, my questions about a patient with a rare inflammatory disease that likely could never have been diagnosed in the DR seemed like they could fall completely flat. Not to mention the fact that a few residents asked me what I was going to present and when I tried to describe it, I got some pretty strange looks.

I restructured the talk a bit so that the first half addressed the diagnosis of the rare inflammatory disease, engaging the residents in some Columbia-style morning report questioning and participation. I felt like I earned their trust a bit in the first half, or at least garnered their attention. Then I dove into the details of what had happened with the patient and her family, pausing a few times to ask what would they would have done if the patient had been under their care (this required a rather terrifying trip into the Spanish subjunctive tense, but I did my best!).

The first question I asked involved the point at which the patient was first intubated in the emergency room. What would have happened to her at the residents’ hospital, Santiago’s public hospital? My audience literally laughed with disbelief. “She would die,” said several people at once.

But, why not intubate her? I pushed again.

Then, came an answer more practical than I could have even imagined: “we don’t usually have available ventilators. There are 10 in the whole hospital and most times they are in use. “

The residents and faculty went on: the general approach to the care of patients like my patient was that, for better or worse, economics drive the way decisions are made in the Dominican Republic. At the public hospital, I was not surprised to hear, patients are asked if they can pay for the ventilator before they are intubated, then charged a large daily fee for its use. For most, the fee is so high, they would never even consider saying yes.

Surprisingly, according to my colleagues, the situation was exactly the same at the private hospitals, possibly even more driven by money than in the public sector. There were some interesting nuances to what was described. Because it is the family who pays for medical services for older Dominicans, it is the family who makes the decisions. It is not that family ties are valued more than individual choices, but logistically, doctors cannot expect the family to pay for something to which they have not agreed.

Furthermore, because so much money is on the line, families are much less likely to agree to an expensive treatment that may or may not work. This brought to mind an interesting parallel with criticisms of our current health care system where there are virtually no direct consequences of how much we spend and therefore, some would argue, skyrocketing health care costs with little benefit to patients.

The conversation continued for another twenty minutes or so. The residents told me that the legality of end of life care decisions is never something they worry about: there are actually no laws in the DR dictating who can make these decisions and who upholds them. When I asked if these discussions ever happen when patients are healthy, they shook their heads. There are no health care proxy forms or living wills. The faculty members had seen these forms because sometimes well-educated Dominicans bring them from the United States, but they have never used them. I couldn’t quite get them to tell me why these discussions couldn’t happen in advance, but they did not seem optimistic about including them in their regular care.

Overall, I learned a lot. I had wondered beforehand if the doctors were the ones charged with making these difficult decisions in the DR, not individuals or families. But, clearly, families were the center of the decision, and not completely unexpectedly, the economics of the decision seemed to trump all else. I came away from the talk feeling less torn about the experience of caring for this patient at Columbia, mostly because I now had a dozen Dominican doctors who also recognized the complexity of her situation and the difficulty of making the decisions we did.

I also now understand a bit better the challenges I face in explaining our decisions to Dominican families who have experienced a system driven primarily by economics. When the economics are taken out of the equation in the United States—as they essentially are in an emergency, in the ICU and for patients with insurance—the decision making process changes greatly and I imagine, can seem totally inexplicable. It’s possible that if I had this insight before I took care of this patient, I might have been able to explain to the family better our reasoning.

Or, maybe nothing, not even flying in my new team of Dominican advisors, would have made them comfortable with what happened. At least now I can lay my concerns about my failure somewhat to rest. My inability to ease the pain of this family was less likely a sign of cultural differences and more a sign of culture universality: the loss of a loved one hurts deeply, inconsolably, in every imaginable part of the world.

Monday, September 13, 2010

Confusion Immersion

In the past two weeks since I arrived in the Dominican Republic, I have spent more time confused than in the last five years of my life.

Sometimes I don’t understand what people are saying, the conversation flashing past me in accelerated Dominican Spanish. Sometimes I don’t understand what people are doing: I follow people when I’m supposed to stay where I am just as often as I stay where I am when I am supposed to follow. But, worst of all, nearly all the time, I don’t understand what people are thinking.

This is not all together an unfamiliar sensation. I experienced this kind of confusion when I lived in South Africa, when I visited Santiago earlier this year and often when I interact with patients from various cultures and with variable levels of health literacy in New York City. But in recent years, as I have become more comfortable as a doctor and, really, as an adult, these times when I have felt completely out of my element have become increasingly scarce.

A worthwhile return to the basics

Though I don’t have this sensation as much as I used to, in the last few days, I have come to the conclusion that surrendering to my limited ability to understand the motivations of those around me is liberating.

Here is a example from last week: I attended a teaching conference for Geriatrics residents at the hospital where my rotation in based. A resident was presenting on an article from a medical journal. She began with the title of the article, an unbelievably long phrase which I could barely finish reading before she was onto the next slide. Soon after, however, she was interrupted by Dr. Medrano, the head of the residency program who sits in on most of the conferences. I didn’t catch every word that he said, but he seemed annoyed and then she seemed embarrassed and apologetic. As her presentation went on, he continued to interrupt her with questions and comments. At the end, he made a summary statement about the poor quality of something; this seemed to refer to the article, but also might have referred to the translation of the article or to the presentation.

Throughout the thirty minutes of the presentation, my mind was flitting all over the place trying to interpret what was going on in front of me. Was the resident unprepared? Was Dr. Medrano being malicious? Was this the usual teaching style for medical presentations in the DR? Or, was it something completely different, like the article was bad?

Despite my confusion, I noticed I was extremely engaged in trying to interpret what was going on. I used all sorts of observation techniques that I don’t often call upon explicitly when I’m in a comfortable situation: I paid close attention to facial expressions, body language, the reactions of the others in the room to the back and forth between Dr. Medrano and the resident. I’m sure these kinds of observations factor into my understanding of all situations, foreign and otherwise, but the way in which I was using them consciously made me realize how often I don’t listen to these observations closely enough.

If I had witnessed this situation at Columbia, I might have observed only for a minute or two before deciding that the resident was inexperienced or unprepared, or that the attending was a particularly engaged teacher or just cruel. Because I don’t trust my judgments here in Santiago, I kept my mind open to observe the situation for much longer.

In the end, was I able to reach a conclusion on what was going on? No. But I did succeed in lengthening the list of possible factors contributing to the interaction: the journal played a role, the translation, the structure of the presentation, the resident, the audience, the attending and on and on. As I participate in these teaching conferences during my time here, I can take this list with me and both refine it and, inevitably, expand it, as I continue to try to make sense of everything new and unfamiliar I am observing.

Taking this message home with me

There is an obvious parallel between my attempts to understanding the motivations of individuals in this foreign setting and my similarly challenging attempts to understand my patients in New York City who come from vastly different backgrounds. In my outpatient clinic, when I urge my patients to follow my instructions (to take their medication regularly, to check their blood sugar, to follow a particular diet), I know I often jump to conclusions when things don’t seem to be going well:

This patient is never going to understand how important it is to take their blood pressure medication.

This patient’s life at home is hopelessly complicated and preventing them from following a healthy diet.

This patient clearly does not believe a word I’m saying.

These interactions are layered with complexities that I cannot even begin to characterize—language, education, culture, life at home. Yet, I jump at the chance to label the reason behind my failure to communicate even when I know there’s a good chance there is much I don’t understand about the lives of my patients. My experiences this past week have made me think that I need to surrender more to my inability to quickly and easily understand my patients.

When I know things are not getting across, I need to acknowledge it and tell myself it’s possible I do not possess the tools to understand exactly why. If my time here is any indication, I should then be able to continue to brainstorm the reason behind the obstacle. Rather than shutting down the process before I get anywhere, I can put it on hold until my next opportunity to interact with the patient and keep thinking broadly. Ideally, this approach will enable me to catch the opportunities that do pop up for improved understanding of my patients. If nothing else, I will stop fighting the confusion and stay engaged in the conversation.

Tuesday, May 4, 2010

From Jess: Community Health Centers

While we spent most of our time with the Geriatrics residents, Dr. Medrano thought that it would be a worthwhile experience for us to be exposed to the Family Medicine Residency Program so we spent a morning learning about their Community Health Centers. We visited a Health Center in a community in Santiago called Korea.

I thought that by far the most interesting part was the second year experience: essentially each second year Family Medicine resident is assigned a small community in Santiago or the surrounding area and is responsible for the health of that community. The resident sees their patients both in the hospital and in their homes; what better way to really understand your patients? Each resident makes a map of his or her community and denotes with push pins the medical problems that each member of the community has – for instance every one with HTN gets a red pin, everyone with DM gets a green pin, etc. The maps make for a unique representation of the health of each resident’s community. Based on the diseases prevalent in their community, the residents (with assistance from their community health workers) develop educational sessions to improve health literacy and the general health of their community. I loved the maps – here are two of my favorites with close ups of the legends.

I wonder how much better I could care for my outpatients if I visited each of them once in their own homes? I think in addition to demonstrating to the patient that you truly care about them as an individual, you get a sense of whether they have a system for taking their medications, what type of food they have in their fridge, if they have shaggy carpet and exposed wires contributing to their fall risk, the list goes on... I know that we have VNS that can go out into the community and ascertain some of this information for us, but I feel like seeing firsthand how your patients live is pretty powerful. Time constraints of residency make it impossible to see all of our patients in their own homes but when I got back from the DR I was inspired to contact one of our attending who makes home visits to the homebound elderly to set up a few home visits so I can learn more about some of my geriatric patients that I am most concerned about.

Monday, May 3, 2010

From Jess: Consulta (aka Outpatient Clinic)

I spent the first morning in consulta, or outpatient clinic with one of the fourth year geriatric residents. After inpatient morning rounds we slowly meandered downstairs to the first floor where the outpatient clinics are located. The resident that I was paired with, FiFi, picked up a stack of blue and pink cards with patient’s names on them and then we proceed to walk back to the clinic room and call the first patient.

The clinic room was simple. There were 4 chairs, 2 on either side of desk. There were no computers but there were several stacks of unorganized forms on the floor. (When I asked what the forms where for, Fifi told me that she didn’t actually no, she had never needed to use them.) The room had an exam table, a sink and a scale. The air conditioner was on full blast and there was seemingly no way to control the temperature.

We called the first patient. She was a 73 yo woman with pink card and history of stroke, DM and HTN who came to clinic with her husband and her family. Her blood pressure was 130/90. No one in the room (patient, family, or doctor) knew which medications the patient was taking because most patients don’t have a clinic chart. Fifi named some medications for the family and they agreed that HCTZ sounded the most familiar so she grabbed the equivalent of a prescription pad and wrote a script for HCTZ and told her to take one pill once a day. Then Fifi filled out what was essentially an order sheet and told the family the patient should get her fasting glucose checked before the next visit.

After the first few patients I learned most of the basics: the pink card meant the patient had no insurance, the blue card meant that the patient had government insurance. The interview consisted of figuring out what conditions the patient had, what pills they were taking and sorting through the stack of papers detailing lab results for any new or pertinent data. Not one of the patients that we saw that morning had a complaint about pain, no one was dizzy, and if any one had depression or mood symptoms, we didn’t talk about them. The exam was BP, HR, listening to the heart and lungs, and checking for edema. The visit concluded with the resident filling out the prescription form (note that the form only has space for three medications, none of the patient’s were taking more than three pills so we never had to give any patients more than one prescription) and an order form for diagnostic tests (which typically included things like a fasting glucose, BUN/cr, urine dip, and total cholesterol).

Besides the lack of somatic pain complaints, it could have been AIM clinic at least in terms of the diagnoses. The second patient was a 76 yo man with DM and after sorting through the records that he brought with him we realized his fasting glucose was 178 so we started a sulfonylurea. The third and fourth patients just got refills of there antihypertensives (the families of both patients brought in a copy of the prescription from the last visit so we were a little bit more confident about the medications that the patients were actually taking). The fifth patient was an 80 yo man with HTN who had new lower extremity edema and his family volunteered that he had been sleeping sitting upright in a chair for the past few weeks. His BP was 130/90, lungs were clear, and he had 2+ pitting edema to the knees. Fifi stopped his HCTZ and started him on lasix for what was presumed heart failure. No further work up was needed she told me, it would be too expensive and wouldn’t really change what would be offered to the patient. The sixth patient was an older woman who present 10 days earlier with dysuria and had a positive urine dip so was started on ciprofloxacin twice daily. She returned to clinic now with continued symptoms and the results of her urine culture (which was ecoli sensitive to cipro). Some detective work eventually revealed she was only taking the antibiotics daily, she thought the cipro was too strong to take twice a day. The last two patients were 95 and 105 year old, and both suffered from “la memoria”. Fifi asked the caregivers if the patients were eating well enough, sleeping well enough or agitated at night. Both patients were quite pleasantly demented and doing quite well at home with a tremendous amount of attention and dedication from their families. The last family gave Fifi a basket with cheese and crackers to thank her for the care she had provided to their loved one.

After we had seen all 8 of the geriatrics patients who were waiting to be seen, Fifi asked me what I was scribbling in my notebook. I explained I was writing a little bit about each patient and keeping a running list about how things were similar and different between her clinic and AIM clinic; most of them I’ve already touched on above.



*lack of temperature control in the rooms

*no PIC, no attending involvement

*patients and family members often have no idea what medications they are taking

*no patient records

*same diseases (DM, HTN, CVA, MI, dementia)

*many fewer labs ordered, many fewer diagnostic tests

*patients take many fewer medications

*no ancillary staff other than 1 woman who seemed to be registering patients for all clinics

*no continuity, patients see different resident each visit

Tuesday, April 27, 2010

From Carrie: First impressions

Rhea, Jess and I also had the opportunity to travel to Santiago. We were in the Dominican Republic for 2 weeks in the beginning of April. We were hosted by Dr. Martin Medrano, head of Geriatrics at the public hospital in Santiago, who also hosted Janina. The public hospital, Hospital Universitario de Jose Maria de Cabral y Baez, provides free care for those without insurance and for the underinsured (often with the government insurance).

Our first day on rounds with the Geriatrics team was interesting, we saw a wide array of patients, many of them hospitalized for similar reasons as our patients at Columbia, although the plan of care often differed due to resources. The layout of the Geriatrics floor consisted of 2 large rooms, each with 4 patients. There was a nursing station outside in the hallway, so if the patient or families needed anything there was usually a nurse nearby. The nurses usually knew where to find the doctors if they needed help, they didn't use pagers!

Vital signs were taken by nurses on a regular schedule (2-3 times every 24 hours), and by the interns when pre-rounding. Records were all kept in a paper chart which was often at the bedside. The paper record included much of what we have in the computer: progress notes, consultant notes, a list of medications (updated daily), allergies, vital signs and blood glucose levels, blood and urine test results, as well as notes from ancillary services such as PT, OT, and nutrition. One thing I noticed about having a paper chart, and few computers, was that it brought care back to the bedside. Compared to our normal days at Columbia, the doctors were more likely to go into a patient's room to find information, and follow up rounds were at the bedside. This also made communication more frequent between the patient families and the medical team.

There were often multiple family members with patients at all hours of the day. Instead of being a burden to the nurses or doctors, these family members were expected to be there. On the rare occasion when family was not present, it was usually a sign of severe poverty and even neglect. While family members were throughout the hospital with patients on all services, there seemed to be the greatest number of family members present on the geriatrics floor. The family members were responsible for providing information on rounds (such as overnight events, current state compared to baseline, and ability to pay for future tests) and were in charge of the patient’s lab results and radiology films (which were often stored under the mattress). Families also helped with much of what we view as nursing activities, including chest PT, exercises, and helped to prevent falls in high risk patients (there were no nursing 1:1s).

I wondered, was the family presence in the hospital a Dominican thing, or was it only at the public hospital? According to my host mother, Bienvenida, there were more family members with patients at the private hospitals because there was more space and private rooms! So it was definitely a Dominican thing...

This made me think of the large families which often visit my Dominican patients at Columbia. My experience at Columbia is that when large numbers of family members arrive, the staff often gets overwhelmed and the family is asked to leave, particularly if it is late at night. Often there is at least one family member who stays as long as possible with the patient, but at times this person is thought to be checking up to make sure that everything is done correctly, or wanting it done in a different way. My experience is that this type of family behavior is the exception at Columbia instead of the norm. Looking back on it, the Dominican families must feel a bit helpless, as they are not counted on for lab results, x-rays, or PT, they are not always included in the minutiae of the daily plan. This has made me recognize that the family’s presence in the hospital is a cultural expectation, nothing more and nothing less than a demonstration of their love and respect for the patient.

Friday, March 26, 2010

From Janina: La Clinica

One of my goals for my time in Santiago was to see a variety of clinical settings, including both outpatient care and the private sector. It took me a few days to sort out how to even ask about these activities because, as it turns out, the clinics in the DR are referred to as “los consultorios” and the private hospitals are called “las clinicas.” So, after several attempts to ask if there were clinics (las clinicas) in the public hospital (the answer being no, which initially made me concerned that there was actually no outpatient care for uninsured patients, but actually meant that there were no private hospitals in the public hospital. Obviously!), I successfully arranged to accompany Dr. Medrano, my host, to his outpatient clinic in the private hospital, La Clinica Corominas.

This turned out to be an incredibly informative experience as the patients that Dr. Medrano saw seemed to be the demographic that I see most often in my clinic at Columbia. In fact, one elderly woman who came for her first visit accompanied by her daughter had just been sent back to the DR by one daughter who lives in the Bronx because behavioral problems related to her dementia were becoming to difficult to control. Dr. Medrano asked the daughter in his office, had she received a CT scan of her head? Lab tests? Where and when was this diagnosis of dementia established? The daughter knew her mother had been hospitalized several times in the US (St. Barnabas, perhaps?), but, unlike in the DR, she had not been sent home with her records so there was really no telling what kind of evaluation she had. This was an interesting flip side to the patients who I have seen in my clinic in Washington Heights, recently arrived from the DR. I have one patient who was diagnosed with colon cancer in the DR, treated with surgery and chemotherapy and then came to the US for further care. She arrived with a giant package of records and letters detailing her previous care. Her oncologist in New York was even able to get her pathology slides shipped from the DR for review. Practically speaking, this experience made me realize that, when my clinic patients tell me they are headed for a long stay in the DR, I need to print out their important medical history (medication lists, recent labs and studies) to facilitate their medical care if they need it while in the DR. But in a grander sense, seeing the struggle of this family with roots in both DR and New York City to find the best setting for their ailing mother, brought to light the incredibly complex relationship between NYC and the DR and the way this straddling of worlds plays out in the medical sector.

Another way in which I had the chance to glimpse more of these links between New York and the DR was through my extraordinary host family, the Vargas. I stayed in the home of Maggy Vargas and her two children, Miguel, a young lawyer and Leiny, an intern at the University hospital. They were incredibly generous hosts and best of all, welcomed me into their large extended family, most of whom still live in Santiago (though others live in Washington Heights, of course. Everyone seemed intimately acquainted with the Wendy’s on 165th and Broadway). The matriarch of the family, La Abuela, is 91 years old and spends her days napping and sitting in a rocking chair on the terrace of her 2nd floor apartment above the cafeteria owned by her family. She had twelve children, about half of whom I had the chance to meet, including Maggy (my host mother), Jacqueline (who owns a salon in Santiago), Tete (who I believe owns the cafeteria and lives in an apartment connected to her mother’s), Altagracia (who actually lived in New Jersey and New York for at least 15 years. Her daughter, Glory, was born in the US and lived their for her first 15 years but returned two years ago to Santiago, a difficult transition according to her aunts) and Eduardo, who remarkably received a kidney transplant at Columbia twelve years ago (I believe from Tete) and now travels twice a year to New York for his follow up appointments.

Overall, I didn’t even come close to processing the many ways in which the DR and New York City are linked in families like that of the Vargas. I heard stories of how travel to the US provides opportunities for education, work and medical care (even kidney transplants!). I also heard how returning home provided security as well: free university education, work in the family business, family support unlike anything I’ve seen in the US. What a fascinating relationship between two very different countries! I feel very lucky to have had the opportunity to see a little of the DR side of things, to hold in my mind and heart when I interact with patients in the ER, the clinic, the wards, or even my neighbors at 173rd St. and Haven. One final image that I will carry with me from this experience: as I got ready to board my plane back to New York City, I noticed the remarkable number of elderly people in wheelchairs preparing to board with me. What kind of flight has 15 people in wheelchairs? Are they returning from a visit to family in Santiago? Are they traveling to the US for medical care? Are they my future patients? If they are, at least now I have gained a tiny sense of where they might be coming from, why they may have decided to make this journey, and a little bit of what they may be leaving behind.

Thursday, March 25, 2010

From Janina: Los ancianos en sus casas (The elderly in their homes)

On my second day in Santiago, I traveled with one of the geriatrics residents, an attending, a medical student and a nurse to visit the homes of four geriatric patients who had been referred for evaluation. The patients had been seen in the ER of the hospital or admitted to a different service (like the orthopedics service for a broken hip) and then referred to Geriatrics for a home visit. In most cases, this visit happened months later.

The first patient we visited was a woman in her 80s. She had been admitted for a seizure and was now back home with her family taking various medications to prevent further seizures. The most eye-opening aspect of this visit was the home environment in which this woman was living. She lives in a small house in a neighborhood full of what appear to be new apartment complexes. But her house did not appear to be new and was, in fact, bursting at the seams with people, mostly small children and their young mothers. In her bedroom, where we found her lying in bed at 10am, there were two large double beds pushed together to fill the entire room and it appeared that at least four or five people were sleeping in the two beds. When we arrived, she got up and immediately became extremely agitated, complaining of unrelenting pain in her legs and back. I got the feeling from her young relatives (who were also her caretakers) that she was often agitated in this way. The visiting doctors seemed very concerned that there was a large element of dementia with behavioral problems contributing to her current state. They wrote for refills of her seizure medications and a referral to the geriatrics clinic at the hospital. I learned at this point that the referral means that one of her relatives must travel to the hospital to make the appointment and then return on the day of the appointment with the patient, a daunting series of events given how many young children for whom the caretaker also seemed to be responsible. Most remarkably, though, throughout the whole interaction, the grandmother yelling and gesticulating, the concerned doctors discussing her case and making recommendations, a small boy of 2 years or so slept peacefully in the middle of the room.

Our second visit was to the home of a gentleman of 101 years, a patient well known to the geriatricians, who is visited at home only because he is wheelchair-bound and it is too difficult for him to travel to the hospital. He was perched happily in his wheel chair on the veranda of his family’s small house, enjoying the breeze, sheltered from the sun, smiling brilliantly. The doctors checked his blood pressure, joked that his girlfriends had come to visit him, and chatted with his daughter (also his caretaker) as she swept the floor of their living room. It struck me at this point how much nicer this man’s life seemed to be than many of the elderly patients I have met in Washington Heights. Elderly Dominicans in the US may find themselves isolated in a dreary apartment (not to mention the often dreary weather outside: certainly no verandas in our neighborhood like this one!), their family members working most of the day, sometimes cared for by a home health aid, sometimes alone. This man seemed so content, even in spite of his limited mobility. It was obvious to me why some of the patients we care for want nothing more than to return to the DR. Why should they care if they will no longer have easy access to a cardiac cath lab or hemodialysis? They can sit in the breeze, surrounded by family, and enjoy the time they have left on this earth.

The final two patients we visited, however, shattered this utopian (and na├»ve) view of the life of elderly patients in the DR. Next we visited a man in his 70s who had been admitted to the hospital several months previously. He was now gravely ill. According to his family, he had been bedbound for 2 years, but for the last several days had now stopped talking and eating, and was bleeding from both his upper and lower GI tract. When we arrived, he was lying in bed in a large wooden shack, covered in a mosquito net, obviously because he did not have the strength to swat away the many flies in the room. Our exam revealed an emaciated man, eyes open, breathing shallowly, with dried blood on his mouth and teeth. The nurse and resident set about examining his back, which caused him obvious pain, though he could only grimace and didn’t make a sound. On his backside was a giant gaping sacral ulcer. The doctors immediately began discussing his condition with his family and recommending they bring him immediately to the hospital for hydration. Unfortunately, this was not the kind of family who could call an ambulance for assistance (ambulances also must be paid for their services in the DR). As the discussions continued, it was revealed that his daughter and caretaker was one of eight children, all of whom seemed to have different opinions on what was best for their father and also, whom should pay. Obviously, this man looked like he needed quite a bit of help, but, to me, he also appeared to be close to death no matter what interventions we might make. Having seen the emergency room at the public hospital, it was difficult to imagine putting this man through the agony of transporting him there and waiting on a gurney in the halls before he could be admitted. I think if I saw this man at home or in the emergency room in New York City, I would immediately refer him to home hospice, but this service does not exist in Santiago. As we left, more and more family members of all ages were gathering in his shack to discuss their next steps. I got the sense that there were many layers of family dynamics to which I was not privy that would determine his fate. The main caretaker promised they would organize transportation to the hospital, but as of six days later, when I left Santiago, the man did not appear.

The final home visit was to a more rural area, though still within the city limits of Santiago. The patient was a woman in her 70s who lives with several of her daughters in a large airy house surrounded by fields, gardens and animals. We actually needed to be escorted to her house by one of her daughters on a motor scooter since street signs were scarce in this area. The patient had been admitted a few months previously for pneumonia. However, when we arrived, we learned from her family that she had collapsed two days earlier and had been unresponsive since then. We found her laid out comfortably in a large bed, surrounded by innumerable family members, several bibles and pictures of Jesus and a priest (not to mention a candle which nearly set my white coat on fire as I entered the room, obviously not paying enough attention to my surroundings). The woman appeared entirely comfortable, but did not open her eyes or react to stimulation of any kind. Her blood pressure was elevated, but otherwise her exam was only notable for her altered mental status. The doctors discussed among themselves. They thought it likely she had had a stroke, probably catastrophically, from which she would not wake up. She was not able to eat or drink. Again, the doctors recommended the family bring the patient to the hospital for evaluation and hydration. Again, I worried that we would do her more harm than good by taking her from her home into the chaos of the hospital, but it seemed unheard of to the doctors and her family that they could tolerate her being unable to eat or drink. Her family seemed genuinely motivated to bring her in, though she did not actually appear at the hospital until five days later. She was still unresponsive and unfortunately, at the time that I left Santiago, still awaiting a bed in the emergency room. Her case was marked on the white board the residents use as their list of currently admitted patients with a special symbol and the words “muy mala” (very bad).