Editor’s note: Finding ways to increase organ donation in the United States will remain an ongoing debate in 2016, primarily because the need is so dire. Incentives have been discussed—everything from funeral expenses, life insurance polices to outright buying and selling kidneys.
In the summer of 2014, the American Society of Transplantation and its Live Donor Community of Practice (LDCOP) convened a consensus conference to identify best practices and knowledge gaps pertaining to live donor kidney transplantation and living kidney donation. The LDCOP sought solutions that did not involve using financial incentives to increase donation.
The LDCOP, formed in 2012, is a group of clinicians with expertise in living donation. Its mission is to advocate, support, and advance knowledge to improve the education and care of the live organ donor.
The consensus conference aimed to identify the following:
- Approaches to improve access to donation and live donor kidney transplantation
- Optimal strategies for educating potential living donors about the long-term and short-term risks and benefits of live kidney donation
- Efficiency improvements for living donor evaluation processes
- Ways to reduce and remove financial and systemic barriers to live donation
The consensus conference participants made recommendations for education of clinicians, donors and recipients, improvements in clinical practice, standards for transplant programs, public policy recommendations, and research priorities .
NN&I asked Rebecca Hays, MSW APSW, the chair of the American Society for Transplantation Living Donor Community of Practice who co-chaired the AST conference, to discuss some of the recommendations and what projects are underway. Ms. Hays is also a Living Donor Social Worker and Independent Living Donor Advocate at the University of Wisconsin Hospital and Clinics in Madison.
NN&I: Can you give us a snap shot of living donation today? Are the numbers down, and do we know why?
Rebecca Hays: There is relatively compelling evidence to describe a decline in living kidney donor transplantation (LKDT) over the past decade, with the number of living kidney donors peaking in 2004 at 6,647, and declining lO years later to 5,819 living kidney donors. This trend is observed despite multiple innovations to expand LDKT, including paired kidney exchange, desensitization, and the use of non-directed kidney donors.
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The decline in living donation is almost certainly multifactorial, and has been attributed to factors such as the poorer health of the general population, an aging transplant candidate population, financial disincentives in an economic crisis, inadequate or uneven educational practices, inefficiencies in the donor evaluation process, UNOS policy changes, along with changes in donor selec tion criteria.
NN& I: You have expressed support for the Advisory Council On Transplantation (ACOT) recommendation #49, which proposes establish ing methods to track living donor outcomes and facilitate past living donors’ access to care. How would this tracking system be developed and who would manage it?
Hays: This is still in the recommendation phase, though UNOS/OPTN has mandated 2-year follow up. A previous consensus conference explored options for living donor fol low-up and outcomes tracking (Living Kidney Donor Follow-Up Conference Writing Group, Leichtman A, et al Am] Transplant. 2011 Dec; ll (12):2561-8), but a funding mechanism is still lacking. For me personally, I favor a narrowly defined Medicare benefit for past living donors to cover complications of living donation (which are of course rare and could be predefined). This would serve two purposes: ensure donors have access to care related to their gift, and provide a way to capture long-term data about complications. In addition, since complications are rare, costs would be pretty controlled.
NN&I: You are also working on a toolkit with transplant social workers Charlie Thomas, Cheryl Jacobs, and others. Can you describe the contents? Who are they directed to?
Hays: There are actually two toolboxes in process as a result of consensus conference recommendations, designed to be standardized, centralized, vetted education for people considering living donation. The Financial Toolkit includes the following content areas:
- Summary of known financial risks
- An interactive “cost estimate” tool
- Living donation and employment- Questions to consider
- Living organ donation for members of the military
- Living organ donation and insurability
- Living donor fundraising
- NLDAC travel grant program
- Other sources of financial assistance
- A description of state and federal laws directed at living donors.
The Medical Education Toolkit has a similarly designed set of specific breakout “chapters” to educate potential living donors. This will include:
- ESRD risk and mortality risk
- Complications and readmissions
- Nondirected donor needs and outcomes
- Emotional impact, family impact
- Kidney paired donation
- Specific medical situations and risks (a series of chapters here)
- Pregnancy after live donation
- Blood type matching and crossing the blood type barrier
- Informed consent
- Living donor transplant outcomes (for recipients)
- Life, long-term, after kidney donation
NN&I: Living donation is a very personal choice. So how do external parties-transplant centers, organ procurement organizations, UNOS play a role in this decision, and how can they do it successfully to increase donation?
Hays: It’s all about making high quality information accessible, the care experience thoughtful and efficient, and finding ways to reduce systemic barriers. That may, in the long run, increase live donation rates-but first and foremost it improves people’s comfort, decision-making process, and experience. There have been many small-scale efforts to do that, but the consensus conference used a structured forum to identify and disseminate promising best practices-and has provided a catalyst for ongoing innovation.
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NN&I: Was there any discussion at the consensus conference about financial incentives for living donation?
Hays: We intentionally left this topic off the agenda, given that it has been addressed in other venues and has been historically a divisive topic for the transplant community. We wanted to have time to devote to other priorities. Rather, this conference had a strong consensus to promote financial neutrality for living donors.
NN&I: What are the next steps for this report and the group?
Hays: In addition to the primary set of meeting recommendations, we’re building the Live Donor Education Toolkits. For programs and nephrology practices, we’re build ing checklists of recommendations to facilitate program growth and improvement.
Live Donor Community of Practice (LDCOP) recommendations
The consensus conference participants made recommendations for education of clinicians, donors and recipients, improvements in clinical practice, standards for transplant programs, public policy recommendations, and research priorities to improve living organ donation.
- Develop a philosophical approach that living kidney donor transplantation (LDKT) is the best option for most transplant candidates and reflect this philosophy in educational processes
- LDKT education of patients with advanced stages of CKD should occur repeatedly throughout disease progression and transplantation processes (e.g., at evaluation, at waiting listing, at re-evaluation)
- Standardize LDKT content and processes across centers to include comprehensive risk and benefit information about living kidney donation (LKD), known fears or concerns about living kidney donation, and stories about real-life LDKT and living kidney donation experiences
- Provide patients and their caregivers with training about how to identify and approach potential living donors
- Provide more culturally-tailored LDKT education to racial/ethnic minority patients, with historically lower LDKT rates, and their support systems
- Educate community nephrologists and primary care physicians about LDKT so patients have access to trans plant education earlier in the disease process
- Develop a process to ensure that transplant and dialysis team members attain competency in living donation risks, methods for communicating risks and benefits, and ways to provide guidance to transplant candidates on effective and ethical approaches to engaging potential donors
- Improve and expand the use of technology to better educate patients
- Implement an independent, national clearinghouse(e.g., website) for the general public and potential donors
- Increase awareness of the National Living Donor Assistance Center among providers, patients, and potential living donors
- Create a living kidney donation Financial Toolkit, which includes a sum mary of living kidney donation financial risks, estimation of costs, available financial resources for the donor, state tax laws pertaining to donation, and how the Medicare Cost Report can best be optimized by programs.
Transplant program recommendations
- Develop a culture among members of the transplant center staff supporting the living kidney donation program
- Hire dedicated living donor personnel, including a liv ing donor coordinator and dedicated physician champion or director
- Ensure that systems and personnel are in place to
- Respond immediately and thoroughly to living donor inquiries
- Carefully evaluate medically complex donors and inform donor candidates who are turned down because of these issues that they may have access to donation at programs with different eligibility
- Create an expedited process for transplant candidates with potential living kidney donors who are at lower risk/lower morbidity or who may be able to receive a transplant pre-emptively
- Participate in an active KPD program, or refer potential incompatible pairs to programs that do
- Collect and systematically review live donor metrics to measure efficiencies
- Create a quality improvement program to ensure ongoing evaluation and improvement of transplant candidate and living donor education about LDKT
Public policy recommendations
- Actively pursue strategies and policies that achieve the goal of financial neutrality for living donors, within the framework of federal law
- Improve and clarify CMS auditing of current transplant education practices within dialysis centers
- Expand OPTN policy pertaining to required educational elements for potential living donors, to include the higher risk of ESRD and pregnancy complications in kidney donors and additional psychosocial risks/benefits associated with donation and non-donation, as the evidence base evolves
- Modify the National Living Donor Assistance Center to eliminate financial means testing and to include some reimbursement for living donor lost wages
- Inform transplant programs of program-specific living kidney donation metrics (i.e., LDKTs performed, LDKT rate, proportion of living donors by key sociodemographic characteristics in which disparities exist, and utilization of the NLDAC pro gram), in comparison to regional and national data
- Develop and pass legislation that prohibits denial of coverage or increase in premiums of life or disability insurance for living donors
- Develop and pass legislation that ensures living donor surgery is considered a qualifying health condition under the Family Medical Leave Act
- Develop and disseminate uniform guidance to payers on coverage for living donor expenses
- Modify state tax laws to include a credit (vs. deduction)for living donation
- Create a living donor VISA program for non-residents
Recommendations for research
- Examine the effectiveness of different strategies to optimize informed decision-making about LDKT and liv ing donation
- Evaluate the impact of strategies to strengthen partner ships between community nephrologists, dialysis providers, and transplant programs on LDKT education, access, dis parities, and rates
- Evaluate quality improvement initiatives to optimize the donor evaluation process and experience, reduce delays, and increase participation in kidney-paired donation
- Examine strategies to reduce financial barriers to living donation, with particular attention to the impact on current disparities in LDKT.