Yesterday I was privileged to accompany Dr. Nisla Camaño Reyes, (Coordinadora Nacional de Cuidados Paliativos de la Caja de Seguro Social, and President of the Panama Palliative Care Association) and the “Equipo de Cuidados Paliativos del Hospital Rafael Estevez,” on four home visits in the region of Aguadulce, a three hour drive from Panama city. Nisla and I set out at 5am in an official car, as the palliative care program in Panama is supported by the Caja de Seguro Social (Social Security Administration).
The first visit was to Melquisedek, a six-year old child with Down’s Syndrome suffering from a rare leukemia. Dr. Roxabel Barcelo, and Rita Ortiz RN checked his symptoms and medications, while social worker Odilia Delgado chatted with Melquisedek’s mother, who is his primary caregiver. M doesn’t speak, but is clearly receptive to touch and energy of our presence. The house was in a humble rural neighborhood with potable water but no sewage disposal system. Blackwater runs in ditches around all the houses.
Our second patient was Rodrigo a 73 year old gentleman suffering from prostate cancer, cared for by his sister, Adela, an upbeat and joyful woman who brought us plates of sweet watermelon while the team examined her brother and chatted about his care and medications. Rodrigo’s pain was managed with Oxycodone and morphine, supplied by the CSS pharmacy. Adela explained that she gets terrific social support from her evangelical church, which comes and prays with her, plays music, and ensures her basic needs are met.
Our next patient was Armenia, an 83 year old lady with COPD and debilitating weakness, who had been overusing the emergency room at the local hospital in order to manage her frightening breathlessness. The team reviewed her oxygen and counseled her about pain and appetite. Her husband is her primary caregiver, but her son came appeared at one point during the visit to bring some his parents some food from his restaurant.
Our last patient was Graciela, a 67 year old lady suffering from advanced stomach cancer, whose primary caregiver was her daughter. Dr. Barcelo sees a lot of patients with advanced stomach cancer, which she attributes to modern Panamanian diets, which no consist of locally produced foods, but of imports that are often genetically modified and laden with sugar and salt.
The team assessed Graciela’s pain and symptoms, advised her to eat smaller amounts more often in order to avoid vomiting, and to stay hydrated. Her daughter, a supermarket manager, came home at lunchtime to learn how to insert a saline drip and keep her mother hydrated as necessary. It is extraordinary to witness the burden that falls on family caregivers of palliative patients, in terms of their energy, commitment, and skills. Essentially they become nurses’ aides, and indeed trainee nurses, administering meds, injections, and learning to how to move, change, and feed their loved ones, many of whom are completely dependent. They do this under difficult economic circumstances, often holding down full time jobs and looking after other family members, including small children. Without these caregivers, trained by palliative care teams such as the one I was privileged to accompany, they would be entirely abandoned, or left to die alone in hospital wards.
I am humbled by, and bow to, each member of extraordinary palliative care teams such as these. They go to work every day, for very little pay, to care for patients and their families dealing with serious illness and health related suffering. After seeing the morning’s patients, we repaired to a local restaurant, got to know each other a bit on a personal level, and enjoyed a delicious lunch with our drivers before Nisla and I headed back to Panama City to prepare for the Central American Launch of the Lancet Report on Pain, Palliative Care, and Universal Healthcare.