Poor families without health insurance present unique challenges for pediatricians who want to do what is best for the children who are their patients. Families are often willing to make tremendous sacrifices to pay for recommended and needed medical care. Physicians may have to decide whether, or how strongly to, recommend expensive treatments, especially when any good outcomes associated with such treatments are not guaranteed. How should we balance the considerations of justice and of the child’s best interest with the grim realities facing poor families? In this article, we present a case from a tertiary care hospital in India in which doctors and parents struggled to figure out the best options for a young man with end stage renal disease.
- CKD —
- chronic kidney disease
- FSGS —
- focal segmental glomerulosclerosis
Poor families without health insurance present unique challenges for pediatricians who want to do what is best for the children who are their patients. In some cases, families are willing to make tremendous sacrifices to pay for the recommended and needed medical care. These problems exist in industrialized countries but are even more prevalent in low- and middle-income countries in which many families live below the poverty level, few have health insurance, and children have complex chronic diseases. Physicians may have to decide whether, or how strongly to, recommend expensive treatments, especially when any good outcomes associated with such treatments are not guaranteed. How should we balance the considerations of justice and of the child’s best interest with the grim realities facing poor families? Here, we present a case from a tertiary care hospital in India in which doctors and parents struggled to figure out what the best options were for a young man with end-stage renal disease.
A 3-year-old boy was referred to a nephrology center in Bangalore, India, because of concerns about nephrotic syndrome. He was diagnosed with focal segmental glomerulosclerosis (FSGS), and later progressed to chronic kidney disease (CKD) within a couple of years. By age 11, the boy needed dialysis and was listed for a kidney transplant and neither parent was medically fit to be a kidney donor.
The boy was the elder son of an unemployed, alcoholic father and an uneducated, albeit highly enterprising, mother. Despite extreme poverty, her zeal to keep her son alive was simply amazing. At every single step of his management of CKD, she would somehow raise the funds needed to buy medications and regularly required tests. She even managed to find enough money to pay for her son’s hemodialysis.
In India, there is no support from the government or medical insurance to take care of CKD or a kidney transplant for most children. Thus, transplants are generally an option only to the affluent. For poor families, the only options are to seek support from non-governmental organizations or to find a community that will give individual donations to pay for such treatment. This boy would need ∼$2000 per year for hemodialysis and ∼$600 for medications. With the help of the doctor’s team, the patient’s mother raised the money. She worked constantly and often had just enough for each dialysis session. The boy was on a waiting list for transplant for 7 years, and during that time he continued dialysis treatment.
When he was 18 years of age, a kidney from a deceased donor became available. He would need $3000 for the transplant and then another $1000 per year for medications. The mother was overwhelmed at the thought of raising this sum. But with the doctor’s encouragement, she doubled her fundraising efforts. She expressed complete faith and trust in her doctor’s recommendation that her son’s life would be better after the transplant.
The surgery went well, but within the first week the boy developed acute graft rejection and renal failure. He was treated with anti-rejection drugs and multiple plasmapheresis sessions. His kidneys did not open up and he was back to dependence on dialysis.
The mother was tearful and speechless. She had spent everything she had for nothing. The doctor asked herself, “Have I done more harm than good to this young man and his family? Was I wrong to push a family with limited resources to undertake an expensive treatment that had no guarantee of success? Should I take the family’s economic situation into consideration when I make medical recommendations?”
Arpana Iyengar, MD, Comments
This case illustrates 2 important issues in the care of a patient with chronic disease over a decade: the dyad of a doctor–patient relationship relating to the patient’s utmost trust in the doctor and the doctor’s fiduciary responsibility to act in the best interest of her patient.
I had been this boy’s doctor since he was an infant. All through those years of care, the mother placed her utmost trust in my recommendations. Over the years, I was humbled by the mother’s untiring efforts to sustain life for her ailing son. During those years, I had frequently struggled with questions about whether to recommend expensive treatments and medications. When faced with a poor family like this one, the doctor has a number of options.1
To forgo tests and investigations although they are absolutely essential
∘ This strategy is commonly employed by doctors in India when patients cannot afford treatment. This is often done without consent. Thus, patients and families want and expect optimum care. If we recommend treatments that we know they cannot afford, we put them in a terrible situation. They must either reject our recommendations or devote all their resources to medical treatment.
To strive for a concession or funding support
∘ In many situations of this kind, doctors strive to seek the help of support groups to provide concession or fund the tests and medications to continue care. This is an extra demand on the doctor, one that could not be done for every patient.
To transfer the patient to a public hospital
∘ Public hospitals in India provide care to poorer patients, but they don’t have the resources or expertise to provide highly specialized care, especially for children. This patient could not have received the care he needed at a public hospital.
At this point, I had recommended an expensive treatment for an indigent patient. His mother wanted to do everything possible to save his life, but I knew that she was coping with tremendous financial and social challenges. It ignited a deep sense of moral responsibility. My concern and compassion for the mother and her family situation was combined with my desire to do the best possible for the young boy.
My motto has always been, “Practice 2 things in your dealings with disease: either help or do not harm the patient.”2 In this case, I wasn’t sure. How does a doctor decide what is best for her patient and the patient’s family? Should I look only at the patient’s medical issues? Or should practicing in the best interest of the child lead to broader concerns? In this case, it seemed that what was best for the child could cause harm to the family.
In India, my patients are often not well-educated. They do not feel empowered to make complex medical decisions. In those circumstances, the doctor has an additional responsibility of prioritizing the patient’s needs while abiding by ethical values and norms.
My decision to recommend a kidney transplant was based on the concept of “discernment” as proposed by Aristotle.3 Discernment requires us to act with a proper balance of reason and desire.
A kidney transplant was the best available form of renal replacement therapy for my patient. If successful, he would have a better quality of life than relying on lifelong dialysis. However, a transplant is not always successful, and it is always expensive. My hospital is one of the leading centers offering kidney transplants for children in the country. The graft survival rates at our center ranges from 98% at 1 year to 80% at 5 years and 40% at 10 years. In this boy, there was an additional problem of him contracting a kidney disease (FSGS) that had the potential to reoccur in the new, transplanted kidney. In our experience, 20% of children transplanted with FSGS had a 40% rate of recurrence of disease. After another expensive treatment regimen for recurrence, >60% of children responded well with normal kidney function. I knew that I would be asking the family to make a significant financial sacrifice with only a 40% to 50% chance of success. These facts were discussed with the mother many a times during the years of care. She always expressed optimism and did not waver in her decision to pursue the transplant, although her decision relied heavily on the fact that I was recommending the transplant. I don’t know what she would have done if I recommended against it.
I had to decide what was best for this child and this family. In the end, I was focused on the child’s right to live.4 With that in mind, I strongly recommended the transplant.
Looking back on that decision and knowing the outcome, I am not sure I made the right choice. Instead, perhaps I should have recommended against the transplant and convinced the family that my decision was based on the fact that they would be unable to afford the post-transplant medical care. I don’t know if the mother would have accepted such a recommendation. If not, and if she still wished and pleaded to undertake treatment, I would have acceded. However, I would now know that I had made it clearer to her that I was not recommending transplant.
Knowing that the transplant was not successful, it is natural for the family to feel dejected, deprived, and deceived. The doctor is also left with feelings of guilt, conflict, and defeat. Despite these feelings, and considering my misgivings as noted above, I might change the way I talk to parents about their options in similar cases in the future. In my communication with the parent from time to time, I did convey to her about the chances of failure and the high possibility of medical complications. However, down the line, I seem to have had taken up a role of facilitating the mother with decisions that tilted more toward medical recommendations rather than focusing on other equally critical issues. With this experience, I would take additional measured steps in my communication with the mother, patient, and family in projecting all of the issues concerned in the same measure and confirming their understanding of them. I would be more explicit in my communication regarding the possibility of an unsuccessful outcome despite the big sacrifices made by the family. Finally, I would be more clear, in my discussions with the family, that my focus is always on what is best for the patient.
Sanjiv Lewin, MD, Comments
Decisions such as the one faced by this nephrologist are more difficult in resource-constrained settings like India than they are in many places in the West.
In our resource constrained settings, a consideration of the economic consequences of decisions is of paramount importance. This might be considered as social ethics rather than individual ethics. Veatch advises us to look not only at individual patient welfare, but to also consider the welfare of other persons and society.5 Catholic moral theology distinguishes between ordinary and extraordinary measures, defining the latter as being those measures that involve a grave burden to other people.
Chatterjee and Srinivasan6 explain how, for both families and for society, costly patient care has opportunity costs. Paying for health care means we cannot pay for other important goods. In India, unlike many western countries, 82% of total medical expenses are paid out of pocket.
In this context, respect for patient autonomy requires us to consider the ways in which each individual is dependent on support provided by an extended family, especially elders and bread-earners. This may run the risk of not always considering the wellbeing of the individual patient. But this risk must be weighed against the benefits of extended families as a social welfare support net, but one with limited resources. The medical decision to recommend a transplant in the adolescent with CKD is almost certainly in the best interest of the patient. In general, a transplant will reduce long-term morbidity and mortality.
Still, in this case, I am a bit wary of the description of the sole caretaker (the mother) as being zealous and highly enterprising. Is there an element of denial or guilt? If so, then the doctors need to be more watchful than usual in not exacerbating her guilt. A dysfunctional family in extreme poverty is a frightening prospect when it is an enterprising woman who is willing to go to any lengths to provide for her child. Is she being unrealistic? Will she turn to the local money lender, sell the land, bond herself to a landlord, sell her cattle, sell her home, or even worse? What would be the implications of these decisions on our patients and their families even if the transplant was successful? What will it cost? What will be killed? Physicians should not turn a blind eye to these socio-cultural realities. The stronger our understanding of the family (beyond purely medical details) and their social, economic, and cultural factors, the more informed will be our decision.
There are other ways that this scenario could be ethically problematic. In many private hospitals in India, physicians are pressured to meet productivity targets by performing a certain number of procedures. For example, if doctors were pushing for a transplant at a private hospital rather than referring the patient to a government hospital in which the transplant would be subsidized, it would be considered ethically problematic. It would also be problematic if all treatment options were not explained to both the patient and his mother. It is not uncommon for the mature adolescent to be left out of the decision-making process.
Assuming that the consent was adequate and that transplant was in the patient’s best interest, then the doctor’s conscience should rest easy because he or she would have followed a medically appropriate and ethically respectable decision-making process.
But that is not the end of the analysis. The doctor should also think about the economic implications for families.
I am not saying that the principles of ethics differ in different settings. Instead, I suggest that one needs to understand how societies, communities, and families function and interact in supporting each other. Justice is as important to ethical decision-making as are autonomy and beneficence. Sometimes, to be fair to all, we must temper our enthusiasm for autonomy. Sometimes, we need to safeguard families against their own desire to do everything. It is common for the poor and marginalized to sell their meager land or cattle, or fall prey to money lenders. This can push families into bonded labor as they endeavor to raise the resources needed to save a loved one. This is not good for anyone, including the patient.
Such considerations are not unjust or discriminatory. McKneally et al7 discuss resource allocations and the way in which it is ethically problematic to make decisions on the basis of clinically irrelevant factors such as religion or sexual orientation. Equal access to organ transplant must be free of biases on the basis of race, sex, income, and geographical distances from sites. But they do not need to be free of consideration of the real economic costs for families. Diverting resources from other necessary essential needs is unethical.
How, then, do we weigh these competing interests? The only way is to try our hardest to make sure that the family does not feel coerced to make 1 choice or another. If they were given information about options, with details of all short- and long-term resources required (ie, time, financial, shelter, nutrition, follow-ups, etc), then the responsibility for the choice and its implications rests with the family and not with the medical team.
In this case, it seems that all the options were discussed by the nephrology team. The informed consent and shared decision-making process included the mother and the adolescent. This adolescent had a unique perspective as someone with 15 years of experience with kidney disease and treatment. I will assume that all options were discussed. If not, then the consent would have been inadequate and unethical.8
The fact that the patient had a bad outcome does not mean that the doctor’s decision was wrong. We have limited ability to predict medical outcomes post-transplant. All we can do is use our best, evidence-based, clinical judgment. As noted above, that would have, and should have, led to a recommendation for transplant in this case.
John D. Lantos, MD, Comments
In 1985, Feinstein9 coined the term “chagrin factor” to characterize a common feature of clinical decision-making. In that article, he talked about situations in which doctors must choose between an active option and a passive option, both of which have known and quantifiable risks and benefits. He notes that, “The combination of the selected option and the ensuing outcome produces a result, which will then be used, in retrospect, to classify the original decision as right or wrong.” Bad results, he notes, will cause the physician to feel chagrin about the choice. Because chagrin is so unpleasant, such feelings will then shape future decisions in such a way as to avoid the possibility of chagrin. Furthermore, we tend to feel more chagrin for actions taken than for actions not taken. The result can be a preference for the status quo, even if evidence favors other choices. Feinstein9 notes that this can lead to major problems that together work to increase cost, decrease favorable outcomes, and, in the end, increase patient dissatisfaction. In the present case, it is easy to see why both the doctor and the mother might wish that they made a different decision. It does not, however, mean that the decision was the wrong one. The solution, as Lewin notes, is transparency and shared decision-making. Feinstein writes, “If the selected option was chosen after suitable evaluation by the patient and family, the clinician will have little or no chagrin to feel afterward, because a wrong result with the chosen option will have been suitably anticipated and will probably be designated as ‘bad luck’ rather than chagrin.” I would only suggest that Feinstein’s suggestions that physicians will have little or no chagrin is wishful thinking. Instead, physicians should have little or no chagrin. But, as Iyengar’s comments suggest, they often do. Acknowledgment of the chagrin factor and recognition of its emotional power is the only way to begin to counter its potentially detrimental effects on future decisions for future patients.
- Accepted April 12, 2017.
- Address correspondence to John D. Lantos, MD, Department of Pediatrics, Children’s Mercy Hospital, 2401 Gillham Rd, Kansas City, MO 64108. E-mail:
FINANCIAL DISCLOSURE: The authors have indicated they have no financial relationships relevant to this article to disclose.
FUNDING: No external funding.
POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose.
- Sokol DK
- Unguru Y
- Veatch RM
- Chatterjee C,
- Srinivasan V
- McKneally MF,
- Dickens BM,
- Meslin EM,
- Singer PA
- Copyright © 2018 by the American Academy of Pediatrics