Partial liver donation is the only life-saving deed that a non-surgeon can do for another person suffering from end stage liver disease. On the other hand, a major operation on a healthy individual with no indication for surgery has been viewed by society with caution and skepticism.
One could wonder why a young, healthy individual would succumb to an elective high risk procedure. Simple answer: they want to save a life. In the world of transplantation, patients and donors are scrutinized in detail by providers, surgeons, and social workers for eligibility. They are also screened carefully by psychiatrists for mental/behavioral stability and sound judgment.
Potential donors spend countless hours and even days at a time away from work to attend pre-transplant visits with teams from multiple disciplines and previous donors who can describe their experience. Eligible donors meet in large conference rooms with the operative surgeons, medical specialists, social workers, transplant coordinators, psychiatrists, etc., engage in serious conversation, and with a clear mind, accept the risks and consequences of the donor operation; no amount of money or fear could convince them to walk away.
As a student, I often found myself sitting down and having impromptu conversations with living partial liver donors. On occasion, I mustered up the courage to ask these good samaritans what motivated them to give this precious gift. Many donate to a loved one: child, spouse, friend, or neighbor. For the most part, they feel that their liver was worth the time without suffering for their loved one.
When they didn’t have a clear answer for me, I followed up with another question: “Well, was it worth it?” One conversation was with a middle-aged woman during her third readmission in two months for abdominal pain after partial liver donation. Her belly was full and distended, and she appeared incredibly uncomfortable. She was not allowed to eat, and she had a tube traversing her nose into her stomach. She paused for a few minutes to think, and then let out a long sigh. Just as I was regretting the question, she looked at me and said without hesitation, “I can deal with it. I’m on temporary disability from my job and my husband is at home getting better every day. Pretty soon this will be behind us and we can get on with our lives, raise our kids, and be happy.”
Her words were positive, but I sensed frustration, fear, and the uncertainty of her financial situation. More importantly, I think she needed someone to listen and give her hope. I leaned in and responded sincerely, “I really hope that happens soon, too. If there’s anything I can do, please let me know.” I sat with her for a few more minutes before I was called away. I still wonder, if I had the opportunity to stay longer, would she tell me why she looked so worried? Did she know what this was costing her?
Personal costs associated with living donor liver transplantation are incredible and patients are relatively unacquainted with the potential outcomes. Although the reported mortality rate from donor liver resection is less than 1% in experienced centers, the reported morbidity associated with this procedure is 8-10%. Living donors often feel placed second in priority to the transplant recipient by providers and resources, they perceive insufficient gratitude from the recipient and family, and are disappointed by lack of attention to their postoperative pain and recovery. They may not tell us how they feel, but we can feel what they are not telling us. Every transplant provider is aware of this and does his/her best to make these living donors feel as comfortable as possible and put them on a steadfast road to recovery.
The financial burden of living donor liver transplant extends beyond the cost of pre-transplant evaluations, hospital admission and operation, and postoperative care. The Millman Research group reported 268 living donor liver operations and over 6300 liver transplant operations in 2006. The total cost billed for a liver transplant from 30 days prior to transplant to 6 months after transplant was estimated on average $577,000.00, which is a significant financial concern for the healthcare system, though a lesser burden than chronic disease management. Post-transplant admission cost was estimated at $94,000.00. We must remind ourselves that this doesn’t include non-medical costs including food, lodging, travel, child care, lost wages, etc. One can estimate that while patients may not bear the entire financial burden, there are significant personal and ancillary costs that accompany a procedure of this magnitude. This is something that we as providers often marginalize and overlook.
As providers, we have the obligation to pay attention and act towards minimizing personal and monetary costs for our patients, turn our focus towards patient-centered care, and facilitate an affordable and sensitive healthcare environment. Sometimes it only takes a sincere conversation, acknowledgement of their concerns, and resources provided for continued support.
Meera Gupta is a surgery resident.
This post originally appeared on the Costs of Care Blog. Costs of Care is a 501c3 nonprofit that is transforming American health care delivery by empowering patients and their caregivers to deflate medical bills. Follow us on Twitter @costsofcare.