Abstract
K
On our first day we were greeted in typical African fervor, with singing, clapping, and joy—from staff and the ‘guests’ who were well enough to come and welcome us. This reception culminated in a ceremonial fruit tree planting and naming in honor of us. And the daily tears started to flow. In America I don't think we can match such gratitude and humbleness in the face of so little.
On touring the hospice I quickly learned how Kimbilio has been planned with sustainability as a core objective, allowing operational and future financial self-sufficiency. Evidence of this included the on-site deep-bore well (used also by the village), the backup diesel generator, and the recently opened funeral home. The quality of care demonstrated at the funeral home is superior to the local government-run mortuary. It has expanded into a “one-stop shop” for the broader community, offering the sale of affordable handmade caskets (cremation is not customary), fresh-cut flowers, meeting tent rentals, and transportation assistance allowing burial at the homestead. Additional self-sustaining efforts include the cultivation of adjacent acreage to ensure the availability of nutritious crops for both guests and staff.
In America we are used to “doing,” to being unendingly busy with tasks. Facing the biggest cultural adjustment of all, my ability to exercise the palliative skill of being present was put to the test. At Kimbilio there is little technologically advanced medical treatment to offer. Maybe the odd nasogastric feed, a complex dressing change, or expert pain and symptom management, albeit with a limited pharmacy. Thinking outside the box becomes key, such as the use of crushed Flagyl tablets topically to combat the extreme smell of many wounds and to aid healing. This lack of resources does have some unanticipated benefits, however. Juli McGowan Boit, NP, founder of Kimbilio, explained that due to the diagnosis of life-limiting illnesses happening late, people are frequently opioid naive and respond excellently to morphine sulphate in moderate doses.
As we compared practices we realized how similar our missions are, such as with ongoing education that palliative care is not just about end-of-life care, but supporting and promoting quality of life. Guests are often discharged, returning later for respite, ongoing pain and symptom management, or for end-of-life care. Consequently the newest project is the construction of an outpatient clinic to offer physical therapy, palliative care services, and a dispensary. Education is highly sought after, and I had the privilege of teaching about the nuances of pediatric palliative care, but not without hesitation. How could I relate? How could I understand what it was like to care for people with so little? Again, our similarities and the team's expertise humbled me. As we shared stories we encouraged each other, laughed while coloring mandalas and eating American candy for self-care!
The team shared challenges in discussing with families the benefits of reducing or halting feeds at the end of life, especially with children, as food is a culturally important and valuable commodity. How, if people have money, they chose maximum medical care in spite of increased suffering. Hurdles exist within the broader Kenyan medical community too. Local physicians discharge patients with the description of a tumor in a letter, avoiding bad news. As guests arrive at Kimbilio they have to be told the truth, that of metastatic disease or incurable cancer. Even if there are treatments available, finances, distance, extensive waiting lists (such as up to six months for radiation), and fear preclude people from obtaining them—accessible treatments and care we take for granted in the United States.
Kimbilio's outreach team follows up on guests discharged home and oversees the care of those not sick enough for admission. We visited two malnourished young sisters whose mother was too mentally ill to care for them. The team attempts to keep children with their families and linked with the few community resources available, not simply giving handouts like many other NGOs (nongovernmental organizations) tend to. We were welcomed into the homes of two women who had been near death with HIV while at Kimbilio. Now empowered with independence to care for themselves, they attend monthly clinics to receive ARV (antiretroviral) medicines. One recounted how she had curled up in a ball on the floor of her home, too depressed and sick to live. Then hope arrived, hope to live, to be a mother and grandmother again, the cord or lifeline of palliative care restoring her purpose.
The full realization of the hope offered at Kimbilio became most apparent after a visit to the local government hospital. The imagery was overwhelming. Patients were jammed into small wards, IV medicines in glass bottles hung from rusty bed frames, cleaners swept piles of rubbish off the floors, multiple fledgling doctors and nurses conducted rounds while learning their trade. As I followed the small palliative care team we came face to face with the powerful presence of misery and despair. Patients could only use the bathroom or get a meal if they could do so themselves. Families were allowed to visit for a mere couple of hours a day as there was no room for them. If lucky enough, some patients were left pain medicines at their bedsides to self-administer, ensuring they would receive them at all. The team described how most patients are diagnosed late in their cancer (a leading cause of death) and frequently die. With high rates of sepsis and complications from chemotherapy plus few intervention or surveillance methods to assist, death lurks close at hand. Finally, patients are often prevented from being discharged until their insurmountable bills are paid.
As expressed in some educational materials of the Kenya Hospices and Palliative Care Association (KEHPCA), the goal of palliative care is, “To heal often, to cure sometimes, to comfort always.” This is eloquently demonstrated by the care provided to guests at Kimbilio. Offering new life, new hope, and even a new purpose, the people of western Kenya are cared for with acceptance and compassion. And now, having returned to the busyness of life in the United States, I catch myself remembering the care, compassion, and love so freely given that causes me to do the same.
