We conducted cognitive interviews with live liver donors who had previously donated a liver segment at Northwestern Memorial Hospital (NMH) (Chicago, IL) between November 2011 and April 2012.
Potential liver donors at NMH proceed through four-phases of evaluation: in Phase I, donors participate in group education and power point presentation about living donation led by a transplant surgeon, and undergo blood tests for ABO compatibility testing. In Phase II/Phase III (same day), about a week later, donors receive a psychosocial assessment by the social worker, independent living donor advocate, psychiatrist or psychologist, and a history and physical by a physician. Further testing (e.g., blood, special protocol MRI) is conducted to assess suitability for donation. The independent living donor advocate discussion entails an informed consent discussion about the risks, benefits, alternatives, voluntariness of donating, etc. A multidisciplinary team reviews all relevant information about the donor, such as the anatomic complexities of the MRI, and makes a decision as to whether the donor will be cleared for donation. The donor is then informed about the decision, and if cleared to donate, the donor is expected to take a “cooling off” period for approximately 10 days, to reflect upon whether to proceed with donation. In Phase IV, the last phase of the evaluation which occurs several days before the living donor procedure, the potential donor and transplant nurse discuss pre-operative instructions, donation risks, and specific details of the recipient surgery. If potential donors prefer to proceed, the surgery is usually performed two days later. Disclosure of the risks, benefits, procedures, and alternatives of donation occurs throughout this process through discussion with clinicians and distribution of booklets on the live liver donor transplant process.
Throughout the evaluation process, the living donor surgeon meets with the LD three times, first by telephone, when LDs call the donor hotline for their first encounter, again in person, during the donor medical/surgical evaluation (Phase II/III), and lastly in person two days before the scheduled surgery to discuss the surgical risks (Phase IV). Donors are informed in Phase IV that the mean hospital stay is two days after donation to avoid in-hospital infections.
Potential donors and recipients are always educated about the possibility of waiting for a deceased donor graft (ECD/DCD) or a split liver. They are given extensive data on the regional availability of this resource. Additionally, at Phase IV of the evaluation process, the transplant surgeon and coordinator again discuss with potential donors and recipients the possibility of cancelling the living donation in the event that a deceased donor graft becomes available. In the past five years, three LDLTs were cancelled due to availability of a deceased donor organ (in one case a split) and subsequent DDLT. After donation, LDs are followed extensively. LDs are discharged after 2 days in the hospital to stay at a nearby hotel (located 4 blocks away) for 2–3 nights (longer for out of state LDs) to reduce the likelihood of nosocomial infections, while keeping a close watch on them. NMH provides transportation between the hospital and the hotel. LDs return for follow-up care at 1 week, 1 month, 3 months, 6 months, 1 year, and 2 years post-donation.
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