The need to improve care for kidney failure
Nancy had two children already. She hoped she’d be going home soon with the third. Having experienced labor twice before without a problem, she had no fear. Why should the third be any different?
It wasn’t just different. It turned out to be a disaster. She suffered an uncommon and dreaded complication called pre-eclampsia, which led to kidney failure. The cards of normality fell in quick succession. The cost of kidney replacement therapy proved too much, and after a few months on dialysis, her family’s financial wherewithal was spent.
“I stopped going for dialysis.” She said.
“You stopped going for dialysis?!” I was incredulous. How? No kidneys and no dialysis: How could you survive? Was she suicidal, perhaps? I was afraid to ask that. I just looked at her quizzically.
“They cost too much. I mean the dialysis, the medicines, the catheters; I couldn’t afford it.” She said, attempting a smile.
A mother of three and erstwhile very active young lady, she was reduced, at only 26 years old, to what she termed “an item of pity.” That was how she put it. I didn’t disagree. I couldn’t disagree.
“I couldn’t be a mother anymore. That hurt the most. Most of the time, I was confined to the hospital wards. I could not be consistent with the dialysis. I couldn’t afford the medication, and many times, I would be admitted because of uncontrollable high blood pressure. Many times it was too high, dangerously high. When I went for dialysis, the blood pressure dived, and I had to be admitted because of low blood pressure. That wasn’t even the worst of times. My belly began to swell badly because fluid was accumulating there. The dialysis did not help; it couldn’t remove the fluid in the abdomen. They would stick a needle into my belly and drain several liters of the fluid. That felt better because the pressure in my abdomen decreased. But it caused my blood pressure to plummet, which meant again I ended up in the wards. This was my life week after week. Then they stopped removing the fluid because of the low blood pressure. The pressure in my abdomen got so bad that I had difficulty breathing and eating. By this time, I couldn’t even complete the scheduled time on the dialysis machine because the blood pressure fluctuations were very bad. The fluid remained. My lungs began to get congested, and life just went from bad to worse.
“Then, my husband left. My social life had disintegrated. I now had to depend on outsiders to help my little children. I have suffered, but I feel the poor children have suffered more. A mother is meant to be there for the children, not the other way round. In that regard, I am not a mother at all. I could bear with anything, but not what I have done to my children. To fail in that primal role is what pains me most.”
Speaking was hard labor for her. Yet she needed to speak it out, to let it out.
So it was that for two years she had been in and out of the wards with infections, excessive bleeding after dialysis, very low blood pressure or very high blood pressure and the swelling of the abdomen. During our first encounter, she had all of them. She came down with an infection, and her catheter had to be changed, which meant she was bleeding at the insertion site because of the blood thinners needed for dialysis. And because of the dialysis and the draining of fluid in her belly, she had very low blood pressure which, after treatment went to the opposite extreme. But after a day in the ward, she wanted to leave!
“Doctor, I need to go home.” She said, straining hard as if drowning in the fluid that filled her lungs.
“Are you serious?” I asked, hoping she was joking. Patients say this all the time. No one likes being in the ward; sharing beds, not getting any sleep, being a witness to the spasms of death all around you. I expected she was joking; I hoped she was.
“Now.” She said.
“Really, Nancy? You need at least a week.” I said, being quite the doctor.
“But I have to go doctor; otherwise things will be terrible at home.”
“You may not even get home given how weak you are.” Weak was euphemistic. That she could outlive her current condition was in doubt. But I didn’t know Nancy.
“Well, I have to be there. My children are alone, and some people are coming home the day after tomorrow to see how they can help. I have to be there.” She was persistent.
The conversation went on and on. With each point she raised, I realized that within that ravaged body was a soul stronger than any I had met. She, the person, the soul, the immaterial self, seemed to exist above and in spite of the damage her body had suffered. She would never allow herself, she told me, to go down with the body. I realized that within her dying self, held in this packaging that was falling apart, was a person more alive than I was. Death didn’t terrify her like it did the rest of us. She had been living with death for so long that it had become a constant companion; a fact not to be avoided but to be appreciated as innate to oneself. Why then would you need to stay in the hospital, to be near a doctor to keep death away? If dying means nothing, what is it that could make you miss a family moment because you are confined to a hospital bed? If you have witnessed so many others die on these hospital beds, wouldn’t you know too well they offer no security at all against an inescapable force?
“Don’t just look at my body. Don’t just judge based on what you see. I know you mean well doctor, but I have a life beyond this body. I have children. I have to look for money for hospital bills, for school fees, I have to do things, you see.” It took time to say this. Breathing, let alone talking, was too much work. The point was clear.
“I promise to be back after two days.” She continued, perhaps sensing I was caving in.
The choice wasn’t mine to make. When someone is so sure she won’t die, you’ve got to respect that.
She did reach home. I knew that because she came back to the hospital a few days later, her spirits high despite the numerous problems she faced.
After a few more weeks during which she was in and out of the wards with a frequency only she could bear with, I left the hospital and did not see her for an entire year. It was a year she technically lived in the hospital, covering the fifty kilometers between it and her home only occasionally. Twice a week, she attended dialysis. Just about each week, she would be admitted with this or other complication. Because she could not afford the supplements needed to help her body produce blood, she was always anemic. She needed blood transfusion, but this happened only occasionally because blood is a scarce commodity in every hospital. The infections continued. Blood pressure became difficult to control. Her abdominal swelling got worse. Breathing became difficult. Everything that makes life normal became a struggle.
When I returned on a visit a year later, I walked into the dialysis center to find her on the same couch on which she lay that day more than a year ago when I had left. I could tell things were worse from afar because she was propped up to near-vertical due to her breathing problems. She lay there, unable to turn even her face.
“How are you, Nancy? It’s been so long.” I said
“You…you..disappeared!” She struggled to get that out. She struggled to smile. Everything was a battle.
“Am sorry. How have you been?”
“I…I…am…fine.” She was struggling. Her condition had deteriorated so much that I felt compelled to ask then forbidden question, the one I had been afraid to ask, perhaps the one that had compelled me to visit.
“How do you keep going, given the circumstances?” I asked.
“My children. I told you last year, my suffering is nothing compared to what I have made them go through.” It took a long time and several pauses to complete that sentence.
“It must be very hard, even for someone as strong as you are,” I commented.
“It is. But I just adapt. I do not ask too much from my damaged body. I can’t afford the medication that would make it stronger, so I have to bear with it. I used to live a day at a time. Now I live a breath at a time. All the other things, eating, sleeping, anything, is just wishful.” Her straining was visible.
Had the complications reduced her chances? Something about what was being done or how it was being done wasn’t in her best interest. Nothing we (as professionals and as a system) had been doing for years was in her best interest. It wasn’t any single factor but rather the constellation of factors which defined her circumstances. The professionals who served her did so to the best possible way. Yet their efforts weren’t enough to offset the deleterious effects of all that she had no access to. She hadn’t seen a nephrologist more than three years since her kidneys failed. Maybe I should have referred her to one back when things weren’t as bad.
But then, I remembered one patient who I had referred for specialist review at the national hospital. I had started him on dialysis after years of poorly managed diabetes, and hypertension and undetected chronic kidney disease led to failure of both kidneys. He had presented to the hospital in severe distress due to congestion of the lungs. His body was badly swollen, and he had lost vision in both eyes. He had all the textbook end-organ complications of diabetes and hypertension. After admission, he deteriorated so fast he had to be admitted in the ICU. For a whole week, he was moved between the ICU and the dialysis center. Afterwards, he improved and started regular dialysis sessions. With all those complications, he was a patient who needed several specialists to review him, but a nephrologist was most urgent. I wrote a referral summary with an emphasis on urgency. On arrival to the national hospital, he was, like everyone else who is referred there, put on the list. He died before he got close to his appointment. That was always the fate of those on the list. It still is.
How would it have been for Nancy? She had survived so far not because of, but in spite of what the healthcare system was doing for her. For more than three years she attended dialysis erratically, she took medicine only occasionally and never as prescribed, she hardly ate, she rarely received the necessary supplements, blood transfusion was inconsistent and anemia a constant problem, infections hit too often and the antibiotics were out of reach: all because of a single thing; cost. This was a person so strong she survived under circumstances incompatible with, even hostile to life itself.
As it had been for more than three years, nothing got better for her. Her condition worsened, and she spent every day of her final month in the ward: the same one in which, a year earlier, our dramatic first encounter had occurred. This time she would leave without promising to return. The permanence of her departure seemed contradictory to what all who had interacted with her had come to expect.
But what is it that we had come to expect really? Should we expect more than the results of what we offer? And what did she expect? What really kept her coming back to the same place even when her condition deteriorated in spite of the efforts she and those who cared for her made? In health, when does it mean when the best efforts seem to fail so spectacularly?
There are numerous reports about the increasing prevalence of kidney failure in Kenya. It is a cause of serious morbidity and mortality. Perhaps what some of the reports have failed to capture is the sheer human suffering caused by this problem. Individuals and families dealing with kidney failure face insurmountable challenges. These challenges are typified in the above story attached to their living human form. It is of course not possible to capture the reality of human suffering in written words. This is just an attempt to bring a human face, to inject a sense of urgency to our progress in the care of kidney failure.
It is distressing to know that the system has not responded appropriately to the increasing morbidity and mortality caused by kidney failure. Instead of improving dialysis care, the response has been to ratio it. Dialysis rationing is where patients undergo fewer dialysis sessions than recommended. With rationing comes the accummulation of toxic metabolic products in the body and the earlier onset of complications. Many Kenyans receive only two sessions a week instead of the recommended minimum of three. This is because the NHIF only pays for those two sessions. For poor people without NHIF, it is all they can afford. Besides this rationing, patients have to buy other necessary items such as dialysis catheter and pay for the procedures. The majority do not have the recommended permanent dialysis catheter and have to depend on the temporary one which comes with serious risks of infections, blockage, clot formation and bleeding.
It is commendable that the national government purchased more dialysis machines and opened more dialysis centers. This increased access to dialysis for many who would otherwise be locked out. However, it did not address the important issues raised in the case presented above. The first issue of dialysis rationing and the costs pushed to patients is a serious oversight. We should not set care priorities on purely economic terms because this could lead to loss of any benefits intended at its inception. It is necessary to tailor health care to the seriouness of a condition and specific patient needs. When we set a standard limit of two sessions for everyone, we presume that all people are the same. This is a fundamentally flawed assumption. Organ replacement therapy should be tailored to the physiological needs of each person if benefits are to be had.
The lack of specialists is a crucial problem. As in all cases of organ failure, treatment must be guided by specialists. Only they can determine the number of sessions a patient needs, the type of drugs they can or cannot use and other factors necessary in increasing survival and reducing suffering. When this is absent, dialysis may become a danger in itself. Like all methods of treatment, it has its side effects. When a patient continues to receive dialysis without being reviewed by a nephrologist, it is likely that its negative effects will cause irreversible damage over time.
Dialysis is an important form of organ replacement. Since kidney transplantation remains out of reach for many, dialysis services should be improved so that people with kidney failure are able to live near-normal lives.