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 naïve) 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).
What struck me in all these narratives was the primacy of family, and family caretaking. Whether it was the small boy in the room with his demented grandmother (or great-grandmother, grand aunt?), the daughter taking care of her 101 year old father, or the complex web of family relationships in the two final cases, family seems to play a vital role in shaping what medical choices are made, or what options are made available to the patients. How does one juggle the care of a small child and an elderly person with dementia, all in one room? And who gets to decide when and how a very sick old person gets taken to a hospital? What are the mechanisms at work here, and how do they differ from models in the U.S.?
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