Shades of Gold

I was enthusiastic about finally visiting John after hearing much about him. As we entered the homestead, his wife, who was cleaning clothes on the compound, excitedly received us. Walking into the house, you could easily miss John, lying still on the bed behind the door in his stuffy room. But after a few minutes, he began to cough. The nurse inspected his bottle of morphine, which had been brought during the previous visit, while the rest of us assessed his vital signs. His morphine was still adequate, but his heart and breathing rates were higher than usual. “Pneumonia? Breakthrough pain?” we pondered. In addition to routine monitoring, we brought him a gift today: a ripple mattress donated through the Gold Care Africa program.

John was a bedbound paraplegic patient with an advanced malignancy. After a prolonged previous hospital stay, he had been discharged for home-based palliative care. Our team had previously noticed the pressure sores and thought the ripple mattresses would serve him well. We turned him to inspect his sacral pressure ulcer, only to realize we were probably a few weeks late. It was already significantly large, with significant dead tissue. I regretted out loud why we hadn't carried a set for bedside debridement of the ulcer. But I was immediately corrected by the nurse, who explained that, with the lack of sterility at home, such a procedure would have only resulted in more challenges and complications.

After demonstrating to the family how to use the mattress, I walked out into the backyard, staring at the tens of houses scattered across the hilly landscape. How many such patients were isolated within the community who would never have the opportunity to receive such a visit? I wondered how the family maneuvers through the hilly terrain to bring him to the clinic at the hospital every month. Truly, a clinical consultation only tells half the story.

We had left the hospital truck almost a kilometre away. During that long, tiresome walk up the hill, I kept pondering our conversations at the Gold Care Africa meetings about what it meant to be a Gold patient in the United Kingdom: often having access to 24-hour free telephone consultations and priority assessments in the emergency department. How different was it in our setting! With our stretched resources, will we ever have the capacity to offer all the needed care for all our palliative patients? How can such a needy family maneuver through the complexities of home-based care? And with the ever-present tension between offering and withdrawing various forms of care, what would a good death mean to John and his family?

Although the end of life in itself is inevitable, we often overlook how its dynamics are influenced by economic, social, and cultural factors. We now routinely code end-of-life patients through the Gold Care project and offer advance care planning discussions to at least four patients weekly, but I believe this coding could be more consequential. Whilst many challenges in the provision of palliative care arise from systemic factors such as high patient burden and stretched staff, the lived experiences of patients cannot be overlooked. Nothing hinders a patient from having concrete preferences about their care more than disempowerment. Patients with little control over their lives will similarly have little control over the end of their lives. It is difficult to expect patients and their families to make sound decisions about their preferred place of care when they are unsure about their next meal. I often feel uneasy when some patients esteem doctors as gods and project all treatment decisions onto them. The journey of better involving patients as stewards of their own health begins with empowering them. This is a mountain we should be willing to climb, both institutionally and nationally. Community-oriented palliative care will be difficult to sustain without patient education and a strong primary care system to support patients and families through treatment decisions. It is our ability to make these investments that will determine the shade of gold our end-of-life patients will eventually adopt.

While the focus of John’s management is to add more life to his days, some palliative patients invariably need more days in their lives. Twenty-eight-year-old Jane, who lives two hours away from the hospital, for instance, comes for hemodialysis at the main hospital twice every week. When we visited her later in the afternoon, she cheerfully welcomed us with tens of juicy mangoes picked from a tree on her homestead. We chatted for a while, and she recounted how she had been diagnosed with kidney failure years earlier, forcing her to drop out of high school due to the frequency of her dialysis sessions. The nearby public hospital was fully booked, and so she had to make the two-hour journey twice weekly, costing her almost KSh 3,000 every week. Her face was visibly puffy, and despite the peculiar presentation of her kidney disease, she had never been referred to the medical clinic for further investigation.

When our chaplain was gifting her a Bible after a chat about the importance of regular clinic visits, she interrupted us with a unique request. She needed help supporting her primary school child, who also has a medical condition, with school fees. It was after she explained the need that I understood how high those weekly costs were for her family. After failing to complete school, the vicious cycle threatened to affect her child too.

Sometimes practicing medicine is a paradox. While we spend more time in medical school learning how to interpret kidney function tests, social determinants of health such as accessibility of healthcare services, education level, economic stability, and social and community context may determine clinical outcomes for patients with kidney disease more than our clinical decisions. Hopefully, Jane is not in her last year of life yet. But she will be a Gold patient earlier than most of her contemporaries. Ultimately, caring for her demands more than clinical expertise; it requires us to understand the realities that shape how people live, suffer, and die. Gold care is defined not solely by protocols or resources at the hospital, but by our willingness to listen, empower, and walk alongside patients and their families with compassion and dignity beyond its walls.