During a House Energy Committee hearing before the Congressional Recess, Rep. Paul Tonko (D-NY) asked Chief of the Organ Transplant Branch at the U.S. Department of Health and Human Services Dr. Raymond Lynch about a case study conducted in Kentucky about organ procurement.
00:00The chair recognizes a gentleman from New York, Mr. Tonko, for his five minutes of questioning.
00:05Thank you, Mr. Chair, and congratulations on your appointment.
00:07I look forward to working with you, and I thank you and Congressman Clark for hosting this hearing.
00:12Families of patients have to make agonizing decisions about the care of their loved ones under great stress.
00:18This is especially true when their loved one is on life support and may be nearing death.
00:23It is essential that the communication with families by hospital staff and OPOs about the patient's condition is indeed accurate and delivered appropriately,
00:32so families can make well-informed decisions that respect the wishes of their loved one.
00:36HRSA's investigation identified a troubling record of the Kentucky OPO's communication with patient families.
00:43In one case, the OPO employees seeking consent to begin preparation for organ donations spoke with a patient's brother who had a cognitive impairment.
00:53This individual was described as, and I quote, childlike in case records.
00:58In a separate case, the OPO spoke with two family members who were, quote, clearly inebriated.
01:04So, Dr. Lynch, in your review, did you determine why the OPO would approach family members like those in these examples
01:11who are not in a position to make serious decisions like consent or organ donation?
01:18The records that we reviewed don't describe the motives of the individuals that did this,
01:23but the inability to reconsider the options and to consider the humanity and the autonomy of these patients and their families is troubling.
01:30And were OPO employees responsible for seeking consent from families for organ donation trained to interact with families this way?
01:40That would be one of the core functions expected of the OPO.
01:43And what do you think needs to change so this doesn't keep happening?
01:48So, we have a corrective action plan in place that includes the requirement that the OPO perform up-to-date education
01:57and setting expectations with the family, with the health care team,
02:02and in making sure that if at any point either the health care team or the family has a concern,
02:07that there is a pause in the process to allow for adjudication of that.
02:11And this seems like a manipulative and overly aggressive strategy.
02:16The sister of the Kentucky patient has said that she was never told that her brother had started to wake up
02:20after she had given consent for donation.
02:23She says she only found out years later.
02:26So, Doctor, the corrective action plan from HRSA directs the OPTN to develop system-wide policies
02:34for improving communication with families and empowering them,
02:37along with medical teams and other involved stakeholders,
02:41to request a pause in response to a patient's changing condition.
02:47What are the gaps in patient-family communication that you found in your investigation?
02:53So this is, as you pointed out, one of the most horrible and challenging times in a family's life.
02:59The events that lead to somebody becoming a potential organ donor are usually sudden and tragic.
03:05Interacting with a grieving family, helping them to make educated decisions,
03:11providing compassionate and fair information,
03:14and a complete sense of what the procurement process will look like, those are skills.
03:19They are skills that some OPOs clearly perform better than others,
03:23but they are skills for which the OPO is responsible.
03:27And why did HRSA conclude that the creation of a system-wide policy
03:31that includes a clear role for patient families was necessary,
03:37and what do you hope will change after that policy is in place?
03:40One of the things that we have done with the new and unconflicted board that came in
03:46was to help them understand that the greater system of patients than we normally hear from,
03:52and the new board on its first meeting heard from a family member
03:55who was a nurse of 25 years' experience.
03:57Her sister was a kidney transplant recipient,
04:00but her nephew, unfortunately, had suffered poor care from a different OPO,
04:05not from the OPO that we're here today discussing.
04:07Making sure that we make clear to the OPTN, to its members,
04:12that this is something that matters,
04:14that the, you know, to paraphrase a hundred-year-old sentiment,
04:17the key to the care of the patient is caring for the patient.
04:21Those are the key elements here.
04:24And how will HRSA evaluate the effectiveness of the OPTN board's policy proposals
04:29and oversee compliance of the policies when they are established?
04:33As we move forward with this, we have several ongoing innovative areas of improving patient safety.
04:39We are making sure that there is appropriate patient and family representation on these deliberative groups,
04:44on these committees within the OPTN, so that those perspectives can be honored.
04:48That's one of the key parts.
04:49Well, again, thank you.
04:50And the committee looks forward to receiving updates as the OPTN board and HRSA collaborate
04:55on clarifying this policy that will affirm the communication throughout the process,
05:00leading up to planned organ donation that patient families are entitled to.
05:04So it's obviously needed, and your efforts are a step in the right direction.
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