English Subtitles for Making life and death decisions | Brian Shepard | TEDxRVA

Subtitles / Closed Captions - English

in November

thousand and twelve weldon Bradshaw was waiting for a new liver his doctors had told him that he had less than a week to live and that had been six days ago well have been healthy all his life he was a runner he was a cost country coach of the collegiate school and even in 2009 when he was first diagnosed with liver disease symptoms at that point we're fairly minimal but by the summer

of 2012 taken a real turn for the worse and in November he was lying in his VCU hospital bed with his cell phone on his chest and in his own words it wasn't so much the eleventh hour as it was 11 55 and the clock was ticking welding got his call he got his new liver and has plans to data and said his granddaughter's wedding z Nicole's could be identified by the backpack secured with her everywhere she

went she carried the backpack because inside it was a device called the freedom driver and what the freedom driver does is power the artificial heart that was keeping Xena live in her husband had four children and we were hoping to have the men are tree of life ceremony at you know sit around Christmas time but she was too sick to leave the hospital by februari she was still in the hospital still quite sick but sure that by valentine's day she'd

have the heart that she was waiting for on februari the 23rd Xena died before her match was found how many of you have that hard on your driver's license or have signed up to be an organ donor that's terrific thank you very much you could save as many as seven lives by doing that but if you given any thought to how the recipients of your organs

might be found as of today there are 120 1910 Americans waiting on the organ transplant waitlist if this is a typical year about 28,000 of them will find transplants some of the ones who are waiting and don't get there call this year will be able to keep waiting and hope for a call in the future some of them won't be able to wait so 79 times a day somewhere in the United

States and organs donated and a decision has to be made one with life and death consequences how do you make such an impossible decision let's imagine that we are writing the waiting list rules from scratch we can start by ruling out any organ that won't match the recipient any organ that medically would might be rejected by their bodies so no a type blood donors in to be type recipients no bees into a is no A's B's rabies and O's but

that's just the first layer we asked transplant centers about a hundred and thirty different antigens that could provoke an immune response in their patient that would endanger their transplant so will rule out the folks for whom that organ might not work but that still leaves many people in case of kidneys thousands of candidates for whom each organ might work and we're gonna need to put them in some kind of order

so let's start with the easy way let's put them in order according to when they registered on the waiting list we all know how to stand in line right what could be any fairer than that will give the next organ to the candidate who's been waiting the longest it's easy to measure it's easy to understand and the system can treat everyone in exactly the same

way so now let's look at the list that we put together say today candidate one on the list has that lucky body chemistry that says almost any organ might work in his body what candidate to on the list she wasn't as lucky she's got more of the potential immune responses

she's much harder to match finding that special organ for her is like finding a needle in a haystack now we've screened for this organ that's why they're both on this list and we know that it will work in either one of them if we don't get an organ to candidate number one he'll probably be able to find an organ tomorrow because he's easy to match

we don't get an organ to candidate number two was much harder to match it could be months it could be years before we find another one that fits the unique body chemistry that she has that's a relatively minor adjustment so we can make that tweak for those really hard to match candidates and still basically be working from a line still basically have a

first-in-first-out system one that we all understand so let's put another wrinkle line another organ is offered for donation and another decision has to be made in this time candidate won again it's at the top of our list because we're using waiting time candidate to this time though is much much sicker if candidate one doesn't get an organ today

chances are he'll be here tomorrow for the next offer candidates who might not be surely that's an adjustment that we can make to in fact even candidate one could probably decide himself to step aside and say here you have this one in a situation like that so we move candidate to to the top because she's sicker and leave candidate one behind her until we look through the rest of the list and we realized that

there are not one sec candidate but dozens and dozens of desperately ill candidates many of whom might not make it until the next offer so are we going to ask candidate one to stand aside for all of them now we could do that and we wouldn't have to leave them behind because eventually candidate one will become one of them they too will be so sick that the day will come when they need a transplant

today right now and they can get to the top of the line that way so now we have a completely different system we started by saying that waiting in line with the right way system treat everyone the same now we're talking about a medical urgency based system a sick his first system where everyone has at least an equal chance at getting that transplant before it's too late

but here comes another candidate and she's got another question she's clearly progressing towards end stage organ failure but she's relatively healthy today the candidate in front of her is sicker than she is there's no question in fact he's so sick that even if he gets the transplant he might not survive the year

if we could get a transplant to the healthier candidate before disease weakens her body she might leave a decade would it be wasting an organ which there are not enough of to give that organ to the sicker candidate have a third option we've talked about an option based on waiting time where the system treats everyone the same even if it allows them to all have different outcomes we talked about an option based on 6 first it says everyone should have

a chance even if we don't get the best use of the organs and now we're talking about a very different principle which is whether we should try to maximize the benefit of a very scarce resource and that's the hardest one of all because to pursue that third option you have to be willing to turn some very sick people away now even if you think you've figured out how best to do this for one organ you look

at the others and you realize that the balance will be different for them all for kidney rules for which there is an effective mechanical substitute dialysis we can lean more towards the waiting time system for livers for which there is no plan B we lean more towards a medical emergency plan lungs are generally based on medical urgency but lungs have that benefit piece that acknowledges that there is a point at which its fuel to transplant

pancreas heart intestines they all have their own set of rules and they'll reach that balance in their own way and there are hundreds of other questions to answer should prisoners be allowed to donate and receive organs is it ever appropriate for a child to be a living donor should we pay donors or their families with that create more donations or fewer should we treat citizens and non-citizens on the waiting list the

same in july of this year a new federal regulation will give us oversight over hand and face transplants for the first time and that's causing us to take a look at how those might be similar to other organs and how they might be different for example we have never allowed a transplant recipient to demand an organ from a donor of a particular race or gender but does that still makes sense if we're talking about hands now we can debate these questions

endlessly and we can have a lot of fun doing it but to do our job we have to actually have an answer and we're very conscious that we work in in an environment that is completely dependent on goodwill so it's important not only that we get the answer right but that we get the answer right in a way that maintains the public confidence in the system and allows people to continue to be comfortable making the decision to be

organ donors so we work very hard to make sure that our decisions are transparent consistent and timely our policymaking process is transparent throughout any one of you right now can go online and look up all the organ allocation rules on our website our committees to make recommendations in our board of directors that approves new policies are democratically elected any proposal that

our committee makes to change the allocation rules has to go out for public comment and has to include both the values and the data that support their recommendation not only are researchers but researchers outside of our organization are allowed to look at our database to consider that data to question our decisions and to make suggestions of their own

now consistency in organ allocation relies in large part on the use of the computer while our committees will wrestle with big questions when it's time to a legate each specific organ no human could make those kind of decisions the emotional push and pull of saying yes and no to individual identified candidates would make it impossible to treat everyone the same but once the computer starts to run it

doesn't know whether you're rich it doesn't know whether you're famous doesn't even know whether you're nice the computer takes this most personal gift of all and it allocates it in a completely impersonal way the computer also helps us make sure that our decisions are timely if every time an organ was offered for donation for transplant

we had to rehash all the issues that go into an allocation decision real people would die while we talked while no system will ever be perfect and we continue to try to make the system better and better as we go when an organ becomes available the people on the waiting list need the best decision that is possible right now that's why just a few blocks away

right here in downtown Richmond Virginia there are biostatisticians at computers poring over data from thousands of past transplants there are policy writers working with committees of medical experts breaking down the kinds of questions that we've been talking about here there are IT teams reprogramming the allocation computers to get the most current data and the most up-to-date policy rules into the system and right

in the middle of all of that is the organ center the organ center is the air traffic control system for the National transplant Network and it's right here those folks are on working the phones and working the computers 24 hours a day seven days a week to help the transplant professionals in the field in their patients because 79 times a day and organ is offered for transplantation and

someone is going to have to make an impossible decision thank you yeah yeah

Video Description

Brian Shepard, CEO of the United Network for Organ Sharing (UNOS), directs the efforts of more than 300 UNOS staff to ensure that the nation's transplant network efficiently and fairly serves the needs of transplant candidates and recipients, living donors and their family members, and medical transplant professionals. Shepard joined UNOS in 2010 as the director of policy and then served as chief operating officer and interim CEO before assuming the position he holds today.

Prior to joining UNOS, Shepard spent 15 years in various positions in Virginia state government, capped by a term as director of policy in Governor Timothy M. Kaine's administration. In that position, Brian worked with Governor Kaine on budget, legislative, and policy issues.

Brian was born in Richmond and grew up in Roanoke. He holds a bachelor's degree in history from Virginia Tech and did postgraduate work in peace studies at the University of Bradford, England. A decade ago, Shepard returned to the River City, where he today lives with his wife, Ellen, and their two sons. He can most often be found coaching one or both of the boys' Little League baseball teams in Byrd Park.

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