And just like that, a month has flown by (and I must write another post to reach my monthly goal). Once again, I have waited as long as possible–Quito has not taught me how to avoid procrastination. I had good reasons for my procrastinating…I was waiting until I had some grand conclusion or profound wisdom to share about end-of-life care. After a month working at Hospice San Camilo, I felt I surely would have something of substance. As I reread through hospice notes and journal entries to prepare for this post, I began to shift my mindset.
I’ve always believed that end-of-life care is a personal decision to be made primarily by the patient with input from those they love. Even as I began planning for this possible journey over a year ago, I was careful when describing how I would try to study end-of-life care. I knew that I could not write my proposal with a guarantee that I would speak with patients and families about their decision-making process. It is just too personal.
I find it interesting then, that I also proposed to observe differences on a broader, institutional level. I mean, sure, it is very likely that the privately funded hospice I work at here will differ in its approach to palliative care than the hospice in rural Jharkhand. When I look at the mission statements of Hospice San Camilo and Kosish, however, both use the words holistic, compassionate, and supportive. At their core, I think most palliative care and hospice organizations will have similar goals. If this is the case, where do differences in care come from? My month of observations at Hospice San Camilo has left me wondering about the attention to details.
Hospice San Camilo is one of the only hospice centers in Ecuador. There are about 20 beds at the hospice, but on average I would say nine of them are full. The hospice is a private institution, meaning each patient and their families pay to be there. This also means that Hospice San Camilo accepts some untraditional “hospice” patients. Consider, for example, Doña Patricia*, an elderly woman with dementia who has been living at Hospice San Camilo for two years. While she isn’t exactly terminally ill, she is willing to pay and seems happy to be living there. The hospice employs three doctors, a physical therapist, a psychologist, and two priests, “to satisfy the physical, psychological, emotional, social, and spiritual” needs of the patients. After working with Dra. Gaby for three days, I texted my family explaining how the doctor I work with is incredible. Although the interdisciplinary team is readily available, Dra. Gaby incorporates each of these elements into her own practice daily.
Every Thursday, I leave with Dra. Gaby and Father Miguel Angel to deliver palliative care to the homes of patients in the south of Quito. Last weeks home visits were particularly striking and demonstrative of the attention and care Dra. Gaby brings into her practice. First we visited Don Jorge, a patient with a malignant stomach tutor. His family happily received us, and greeted each member of our team with a fresh lemonade. Don Jorge was sitting in an arm chair in the living room, alert and eager to meet with the doctor. Dra. Gaby and Don Jorge greeted each other with a hug, and then immediately dove into questions and concerns. Don Jorge had been running through his list of concerns for almost five minutes, when Dra. Gaby politely interrupted him.
“Don Jorge, excuse me, but are you Catholic?”
I think he had mentioned going to mass once in passing…I can’t be sure because honestly I probably only understand 70% of what is said in Spanish.
He said that he was, and Dra. Gaby responded with another question, “Abuelito, when was the last time you received communion?”
The whole room became silent. Don Jorge’s wife and daughter peered at him earnestly. None of them were sure of the answer.
Dra. Gaby asked Father Miguel Angel if we could work to arrange a time for Don Jorge to receive communion here at home with his family. It was decided that Father Miguel Angel would return to Don Jorge’s house the following Friday, and meanwhile Don Jorge’s family would arrange for more family members to be present for this special moment.
I had never seen a doctor so seamlessly weave religion into a conversation while reviewing a patient. It had always seemed too personal and too irrelevant to have a place in healthcare. Or at the very least, it had always seemed outside of the scope of the doctor’s role. But Dra. Gaby sensed something in the way Don Jorge spoke about mass, and she made it her responsibility to help address a spiritual and social need, not only a medical one. Father Miguel Angel led us all in a prayer before we said our goodbyes and set off to see the day’s next patient.
After four years working at a volunteer hospice and one month at Hospice San Camilo, I had seen a wide range of palliative care patients. When Don Ricardo’s son escorted us to his room, however, I still found myself somewhat shocked. Two beds were shoved into a small, windowless room. One was occupied by Don Ricardo, a frail man lying there with no pillow, no blankets, and no pants. Then, I noticed the smell.
Dra. Gaby continued, as if nothing was amiss.
“Hola, cielo. ¿Cómo vamos?”
She began to review Don Ricardo. Listening to his lungs and his heart, testing for a response in his eyes. She moved to check his brief, but first stopped at his hands. She turned to Don Ricardo’s son.
“When was the last time someone cut his fingernails?”
I hadn’t even noticed that his nails were practically curling over his fingers. Dra. Gaby asked the boy to bring her some nail clippers––it was the first time I had ever seen a doctor take the time to cut a patient’s fingernails.
In less than three hours, Dra. Gaby demonstrated how broad the role of doctor can be. From prescriptions to spiritual attention to fingernails, personal began to take on a whole new meaning. Even though Hospice San Camilo is a very well-run institution, I don’t think I would be as impressed by the care delivered if it weren’t for Dra. Gaby noticing a small piece of food left behind in a patient’s mouth, smelling the mucus that a patient coughed up, arranging one last birthday party for yet another patient…the list of these “little” things goes on and on. Maybe I still will find large-scale differences between institutions, but my time at Hospice San Camilo has definitely shaped me to observe the smaller, seemingly less significant things as well.
*All patient names have been changed to protect their confidentiality