Ethical issues concerning the use of renal replacement therapy (RRT) for end stage kidney disease (ESKD) have been attracting much attention recently. The International Society of Nephrology (ISN) is in the process of developing recommendations concerning the provision of ESKD services globally.Reference Harris, Davies and Finkelstein1 While these recommendations will have a special focus on care in lower-resource countries, the same basic principles apply to all, including high income countries. The ISN emphasizes ensuring that a rational, fiscally sound, and integrated model of ESKD care is developed including hemodialysis and peritoneal dialysis, transplantation and conservative (non-dialytic) pathways with careful attention placed on monitoring outcomes and ensuring basic standards of care.2 Importantly, the ISN stipulates that this care must be delivered in an ethically responsible manner, promoting patients’ interests, offering access to care while maintaining procedural and distributive justice, minimizing the influence of financial incentives, and protecting the interests of vulnerable groups.Reference Martin, Bargman, Davies, Feehally and Finkelstein3
While the ISN initiative has been primarily focused on advising lower resource countries on how to develop and expand ESKD services, it also serves as a reminder that high income countries need to examine the fundamental principles on which ESKD care is delivered. Thus, it is important that the nephrology community in the United States (U.S.) reflects on how this care is provided and to what extent the care is consistent with the guidelines outlined by the ISN.4
The U.S. has one of the highest incident and prevalent rates of ESKD care in the world and international comparisons suggest that ESKD patient care in the US differs in several important ways from that in other high income countries.5 For example, the data presented by the Dialysis Outcomes and Patterns Study (DOPPS) groups have clearly noted for the last 20 years that ESKD patient mortality in the U.S. is substantially higher than in many countries in Europe or Japan, even when adjusted for known mortality risk factors.Reference Goodkin, Bragg-Gresham, Koenig and Wolfe6 This likely reflects differences in practice patterns that have not been fully identified as yet.7 What practice patterns might distinguish practice in the US compared with other countries? The U.S. Renal Data System (USRDS) has consistently shown that the percentage of patients maintained on peritoneal dialysis (PD) compared to hemodialysis (HD) is lower in the U.S. than in Canada, Australia, and many European countries despite the recent efforts of the government and dialysis providers to expand home dialysis treatments.8 Conservative (supportive, non-dialytic) care has been receiving increasing attention globally, particularly for elderly patients with various co-morbidities.Reference Muthalagappan, Johansson, May Kong and A Brown9 But conservative management in the U.S. is used infrequently (something nephrologists have been aware of for many years). Why is this? A recent publication suggests that the unwillingness of nephrologists to pursue conservative management is influenced by provider- and institutional-level barriers.Reference Ladin, Pandya and Kannam10 In contrast, well developed conservative care pathways have been developed in many countries, including Canada, Australia and the Netherlands.Reference van Loon, Goto and Boereboom11 Another important difference in the U.S. delivery of ESKD care is that the vast majority of RRT is provided by for profit companies that pay careful attention to the reimbursement of the services they provide.
The paper in the current issue of this journal addressing “Emergency-Only Hemodialysis Policies: Ethical Critique and Avenues for Reform” is, there-fore, a timely and relevant paper, calling attention to the ethical issues of providing RRT for the estimated 6,500 undocumented immigrants in the U.S. and who is responsible for the reimbursement for these services.Reference Lavingia, Raghavan and Morain12 Dialysis providers depend on patients’ insurance plans to underwrite the cost of dialysis care. If patients have no insurance, individuals must find a way to pay for services. Although dialysis providers as a rule accept insurance payments for ESKD care, charges for dialysis services for those individuals without insurance are generally far in excess of reimbursement offered by Centers for Medicare and Medicaid Services (CMS) or private insurance. These sometimes exorbitant charges are unaffordable for the vast majority of uninsured individuals. Thus, ESKD patients without private insurance and not eligible for Medicare or Medicaid support, such as undocumented immigrants, pose special problems. In the absence of a national policy concerning the care for these individuals, each state must decide whether to support the care of these individuals. Even at Medicare reimbursement rates, the annual cost for providing care for HD and PD patients is high: approximately $90,000 and $78,000 respectively, with the actual charges for the dialysis treatments representing less than 40% of these amounts (the rest being spent on hospitalizations, medications, access procedures, etc.).13
Lavingia et al. are correct that this situation is morally unjust and is certainly not consistent with the core principles of ESKD care outlined by the ISN. Having differing policies in each state is not a rational solution to this challenging problem. There surely needs to be a clearly articulated federal and/or CMS policy concerning the provision of care for the undocumented immigrants. The challenge of providing this care is the responsibility of the entire nephrology community, including dialysis providers, nephrologists, national nephrology organizations, hospital systems, and the government.
Thus, what happens to the undocumented immigrants in the U.S.? In many states, lack of financial support results in dialysis providers denying permanent HD care in outpatient facilities. These unfortunate individuals must intermittently present to hospital emergency departments to seek life-saving dialysis. Lavingia et al discuss how the policy of “emergency only HD” (EOHD) for undocumented immigrants violates several core principles of medical ethics and contradicts the ISN's clearly enunciated principles of distributive justice and protecting the rights of vulnerable groups.14 Independent of the ethical concerns, the authors also correctly underscore how providing emergency only care rather than well-established, comprehensive care results in both poor outcomes for the individuals but also an increased financial burden for the health care system. The authors give examples of how different states have dealt with this problem in the absence of a well-articulated financial or ethical policy by the federal government or CMS.
One issue not discussed by the authors, however, is the responsibilities of the dialysis facilities to share in the burden of providing care for these patients. The cost of dialysis care in the U.S. is now largely provided by taxpayers through Medicare, Medicaid, and to a lesser extent by private insurers. Care for undocumented residents largely falls to hospital systems via emergency department visits, acute dialysis treatments and hospitalizations resulting in higher complication and mortality rates for these patients. Should not dialysis facility owners whose profits are virtually guaranteed by the federal and state governments through Medicare and Medicaid, share in the moral burden of caring for undocumented residents requiring dialysis?
In our own experience, Connecticut (not discussed by Lavingia et al.) does not pay for the care of undocumented immigrants. All patients, however, are cared for by hospitals and physicians with no reimbursement. When patients require outpatient dialysis care, some choose to move to neighboring states such as New York (which does provide financial support for dialysis services) or the hospital system negotiates with dialysis providers to accept a payment from the hospital to provide this care. This process is often prolonged by financial negotiations, resulting in unwarranted inpatient hospital days and disruptions in patients’ work and family routines.
Lavingia et al. are correct that this situation is morally unjust and is certainly not consistent with the core principles of ESKD care outlined by the ISN.15 Having differing policies in each state is not a rational solution to this challenging problem. There surely needs to be a clearly articulated federal and/or CMS policy concerning the provision of care for the undocumented immigrants. The challenge of providing this care is the responsibility of the entire nephrology community, including dialysis providers, nephrologists, national nephrology organizations, hospital systems, and the government.
Ethical issues concerning the use of renal replacement therapy (RRT) for end stage kidney disease (ESKD) have been attracting much attention recently. The International Society of Nephrology (ISN) is in the process of developing recommendations concerning the provision of ESKD services globally.Reference Harris, Davies and Finkelstein1 While these recommendations will have a special focus on care in lower-resource countries, the same basic principles apply to all, including high income countries. The ISN emphasizes ensuring that a rational, fiscally sound, and integrated model of ESKD care is developed including hemodialysis and peritoneal dialysis, transplantation and conservative (non-dialytic) pathways with careful attention placed on monitoring outcomes and ensuring basic standards of care.2 Importantly, the ISN stipulates that this care must be delivered in an ethically responsible manner, promoting patients’ interests, offering access to care while maintaining procedural and distributive justice, minimizing the influence of financial incentives, and protecting the interests of vulnerable groups.Reference Martin, Bargman, Davies, Feehally and Finkelstein3
While the ISN initiative has been primarily focused on advising lower resource countries on how to develop and expand ESKD services, it also serves as a reminder that high income countries need to examine the fundamental principles on which ESKD care is delivered. Thus, it is important that the nephrology community in the United States (U.S.) reflects on how this care is provided and to what extent the care is consistent with the guidelines outlined by the ISN.4
The U.S. has one of the highest incident and prevalent rates of ESKD care in the world and international comparisons suggest that ESKD patient care in the US differs in several important ways from that in other high income countries.5 For example, the data presented by the Dialysis Outcomes and Patterns Study (DOPPS) groups have clearly noted for the last 20 years that ESKD patient mortality in the U.S. is substantially higher than in many countries in Europe or Japan, even when adjusted for known mortality risk factors.Reference Goodkin, Bragg-Gresham, Koenig and Wolfe6 This likely reflects differences in practice patterns that have not been fully identified as yet.7 What practice patterns might distinguish practice in the US compared with other countries? The U.S. Renal Data System (USRDS) has consistently shown that the percentage of patients maintained on peritoneal dialysis (PD) compared to hemodialysis (HD) is lower in the U.S. than in Canada, Australia, and many European countries despite the recent efforts of the government and dialysis providers to expand home dialysis treatments.8 Conservative (supportive, non-dialytic) care has been receiving increasing attention globally, particularly for elderly patients with various co-morbidities.Reference Muthalagappan, Johansson, May Kong and A Brown9 But conservative management in the U.S. is used infrequently (something nephrologists have been aware of for many years). Why is this? A recent publication suggests that the unwillingness of nephrologists to pursue conservative management is influenced by provider- and institutional-level barriers.Reference Ladin, Pandya and Kannam10 In contrast, well developed conservative care pathways have been developed in many countries, including Canada, Australia and the Netherlands.Reference van Loon, Goto and Boereboom11 Another important difference in the U.S. delivery of ESKD care is that the vast majority of RRT is provided by for profit companies that pay careful attention to the reimbursement of the services they provide.
The paper in the current issue of this journal addressing “Emergency-Only Hemodialysis Policies: Ethical Critique and Avenues for Reform” is, there-fore, a timely and relevant paper, calling attention to the ethical issues of providing RRT for the estimated 6,500 undocumented immigrants in the U.S. and who is responsible for the reimbursement for these services.Reference Lavingia, Raghavan and Morain12 Dialysis providers depend on patients’ insurance plans to underwrite the cost of dialysis care. If patients have no insurance, individuals must find a way to pay for services. Although dialysis providers as a rule accept insurance payments for ESKD care, charges for dialysis services for those individuals without insurance are generally far in excess of reimbursement offered by Centers for Medicare and Medicaid Services (CMS) or private insurance. These sometimes exorbitant charges are unaffordable for the vast majority of uninsured individuals. Thus, ESKD patients without private insurance and not eligible for Medicare or Medicaid support, such as undocumented immigrants, pose special problems. In the absence of a national policy concerning the care for these individuals, each state must decide whether to support the care of these individuals. Even at Medicare reimbursement rates, the annual cost for providing care for HD and PD patients is high: approximately $90,000 and $78,000 respectively, with the actual charges for the dialysis treatments representing less than 40% of these amounts (the rest being spent on hospitalizations, medications, access procedures, etc.).13
Lavingia et al. are correct that this situation is morally unjust and is certainly not consistent with the core principles of ESKD care outlined by the ISN. Having differing policies in each state is not a rational solution to this challenging problem. There surely needs to be a clearly articulated federal and/or CMS policy concerning the provision of care for the undocumented immigrants. The challenge of providing this care is the responsibility of the entire nephrology community, including dialysis providers, nephrologists, national nephrology organizations, hospital systems, and the government.
Thus, what happens to the undocumented immigrants in the U.S.? In many states, lack of financial support results in dialysis providers denying permanent HD care in outpatient facilities. These unfortunate individuals must intermittently present to hospital emergency departments to seek life-saving dialysis. Lavingia et al discuss how the policy of “emergency only HD” (EOHD) for undocumented immigrants violates several core principles of medical ethics and contradicts the ISN's clearly enunciated principles of distributive justice and protecting the rights of vulnerable groups.14 Independent of the ethical concerns, the authors also correctly underscore how providing emergency only care rather than well-established, comprehensive care results in both poor outcomes for the individuals but also an increased financial burden for the health care system. The authors give examples of how different states have dealt with this problem in the absence of a well-articulated financial or ethical policy by the federal government or CMS.
One issue not discussed by the authors, however, is the responsibilities of the dialysis facilities to share in the burden of providing care for these patients. The cost of dialysis care in the U.S. is now largely provided by taxpayers through Medicare, Medicaid, and to a lesser extent by private insurers. Care for undocumented residents largely falls to hospital systems via emergency department visits, acute dialysis treatments and hospitalizations resulting in higher complication and mortality rates for these patients. Should not dialysis facility owners whose profits are virtually guaranteed by the federal and state governments through Medicare and Medicaid, share in the moral burden of caring for undocumented residents requiring dialysis?
In our own experience, Connecticut (not discussed by Lavingia et al.) does not pay for the care of undocumented immigrants. All patients, however, are cared for by hospitals and physicians with no reimbursement. When patients require outpatient dialysis care, some choose to move to neighboring states such as New York (which does provide financial support for dialysis services) or the hospital system negotiates with dialysis providers to accept a payment from the hospital to provide this care. This process is often prolonged by financial negotiations, resulting in unwarranted inpatient hospital days and disruptions in patients’ work and family routines.
Lavingia et al. are correct that this situation is morally unjust and is certainly not consistent with the core principles of ESKD care outlined by the ISN.15 Having differing policies in each state is not a rational solution to this challenging problem. There surely needs to be a clearly articulated federal and/or CMS policy concerning the provision of care for the undocumented immigrants. The challenge of providing this care is the responsibility of the entire nephrology community, including dialysis providers, nephrologists, national nephrology organizations, hospital systems, and the government.
Annex 1 Summary of key legislation on cancer care coverage in Connecticut, Maine, and New Hampshire
Abbreviations: AHFA-DI = American Society of Hospital Pharmacists’ American Hospital Formulary Service Drug Information, AMA DE = American Medical Association’s Drug Evaluations, CT = Connecticut, DOD = Department of Defense, FDA = Food and Drug Administration, IRB = Institutional Review Board, ME = Maine, NCI = National Cancer Institute, NH = New Hampshire, NIH = National Institutes of Health, USP DI = U.S. Pharmocopoeia Drug Information Guide for Health Care Professional, VA = Veteran Affairs