Was it Worth It?

Posted by on Dec 2, 2013 in Blog, Stories | 3 comments

Was it Worth It?

By Meera Gupta, MD

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.

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Meera Gupta is a PGY6 resident in general surgery at the Hospital of the University of Pennsylvania.  Her clinical interests include adult and pediatric transplant surgery.  Meera plans to practice surgery in an academic setting where she can devote time to research focusing on surgical outcomes of pediatric and adult organ transplant recipients, patient safety and quality, and resident education.  She recently completed the University of Pennsylvania Health System Resident Healthcare Leadership in Quality Training Track and earned a Master’s Degree in Clinical Epidemiology and Biostatistics in 2013 from the University of Pennsylvania.

3 Comments

  1. I’d like to know where Dr. Gupta’s 10% morbidity statistic originated. A2ALL, the US largest adult-to-adult live liver transplant study to date, claims a 40% complication rate, which is corroborated by many other studies from various countries. They also determined that the experience of either the surgeon nor transplant center reduced that rate:

    http://livingdonorsarepeopletoo.com/40-of-living-liver-donors-experience-complications/

    I also take issue with the assertion that “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.” It’s been nearly 60 years since the first living kidney donor transplant yet we only implemented the barest of national standards of care in 2013.

    Living liver donors *still* have no national standards of care.

    In addition, we have no comprehensive short or long-term data on living donors’ health or well-being. We have *no* idea what happens to living donors 10, 30 or more years down the road. If transplant professionals were so concerned about the ‘personal costs’ of donation, why don’t they encourage the creation of a national registry? Recipients have one, after all. And why don’t they treat their living donors more like weight-loss patients, and enroll them in support groups from the beginning of their evaluation process until a year post-donation?

    If Dr. Gupta cares about living donors as much as she claims, I strongly encourage her to join an OPTN committee, apply for a spot on ACOT and work actively work to change the system in a positive way.

  2. I think that these points are well taken and thank you to livingdonor101 for posting. The essay expresses concerns for patients from a provider’s standpoint and raises points that focus on the need for support to living donors, even when they are trying to be strong. I truly believe that the complication rate for any living organ donor should be zero. But, we also have to recognize that living liver donation is a huge operation with very high risks long term. The post from livingdonor101 discusses the A2ALL study, which covers at least 10 years of follow up reporting on a number of complications that may not have been considered in other studies. There are, however, studies supporting that living liver donation is safe and with good outcomes. According to Johns Hopkins researchers, individuals who donate a portion of their liver for live transplantation usually recover safely from the procedure and can expect to live long, healthy lives. This study is published in Gastroenterology. Segev and his team reviewed data from all 4,111 donors in the U.S. between April 1994 and March, 2011 in order to determine the safety of live liver donation. Patients were followed for an average of 7.6 years. Over the study period, 7 donors died in the 90 days following the procedure. However, according to the team, long-term survival rates for donors was similar to that of live kidney donors, as well as a healthy control group selected from the National Health and Nutrition Survey.
    The 10% complication reported in the essay stems from multicenter data referring to complications occurring within 90 days of surgery, similar to the A2ALL study which states a 3-15% complication rate depending on the complication. I think the point is also well made that we need a database with donor outcomes over a long period of time in order to understand how outcomes are changing. We all agree that living liver donors need a lot of support due to long term risks after a large operation like this, but they are also in the same boat as other people with large operations for other reasons. And I agree – I think having advocates for living donors on the Advisory Committee on Organ Transplant would benefit everyone, especially potential donors. Thank you.

  3. Thought provoking post, with even more thought provoking commentary. Outcome metrics on complex medical conditions are only just starting to be fully disclosed in 2013. Media headlines will trumpet new discoveries, but not the outcomes of the treatments delivered by those new discoveries. Even simple TX protocols are almost unicorn-like in their difficulty to ID.

    I love “Name”‘s call for patient advocates on the transplant advisory committees that provide governance for organ donation/transplant activity. Transparency of outcomes AND cost are the only way to determine value, and deciding “is it worth it?”

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