Category Archives: Presumed Consent

A Two-Tier Approach to Increase Organ Donation


 

When a human organ is recovered and transplanted everyone involved gets paid, the physicians, the hospital and the OPO, and they deserve it.  The donor or donor’s family, however, gets nothing but a thank you. I have long  believed that the answer to the organ shortage is a combination of presumed consent and some sort of financial aid for living donors and for deceased donor’s families.

 

I will address both issues but first, presumed consent.  I fully endorse the policy proposed by David W. Courtney, an eminently qualified expert on the subject.  His full article and bio can be read at     http://www.trioweb.org/resources/YourChoiceFirstCourtney070107.pdf.  Presumed Consent is already in place in Austria, Belgium, Bulgaria, Czech Republic, Denmark, Finland, France, Greece, Hungary, Italy, Latvia, Luxembourg, Norway, Poland, Portugal, Singapore, Slovak Republic, Slovenia, Spain, Sweden, and Switzerland

 

Here is my edited version of Courtney’s proposal.  Again, I urge you to read the entire document.  According to Courtney, “Presumed Consent Policy in the US should be implemented with these four areas of integral capabilities:”

 

1) Notification, Education, and Awareness– Every adult will need to be formally notified of the law and given an opportunity to state their choice.

 

2) A Central Registry The most reasonable is a national “opt-out” registry. In Europe only 2% opt out of the program, so it would be easier and less expensive to track those that opt-out than those that opt-in.

 

3) Program management– As an extension of the OPO’s, we need a Dr. or at least a nurse in every hospital with over 150 beds to coordinate and manage the program.

 

4) Oversight- We would have to guard against abuses. We don’t want a system that promotes “death mongers” and we don’t want a system that allows any one person or part to be ignored or fail.

 

Courtney goes on to say, “Our current system with the United Network for Organ Sharing (UNOS), our regionally located OPO’s, and the existing transplant centers can be utilized continuing their current roles. We would still need the OPO’s to provide procurement coordination and donor family services and UNOS could be utilized to maintain a confidential “opt out” registry to verify a potential donor’s wishes while continuing their current mission. Making a choice remains the most important part of this policy as no one should be ridiculed for their choice and every one is entitled to have their choice honored.”

 

Scott Carney, an investigative journalist based in Chennai, India, quotes Eric Johnson, professor of business at Columbia University and a proponent of presumed-consent policy, as saying,  “Research shows that there would be an increase of between 16 percent to 50 percent in the availability of organs, and others have speculated that this would eliminate the shortage of organs in some categories,”

http://www.wired.com/medtech/health/news/2007/05/india_transplants_donorpolicy

 

My support for the Courtney plan is strong, but I do not think his plan alone will accomplish the goal.  In order for us to greatly diminish or even eliminate the organ and tissue shortage, we need to implement a financial incentive program.  This, too, could be managed by UNOS.   

 

1.    Living donors should be provided adequate lifetime healthcare insurance.  While the donor’s surgery and care is currently financed by the recipients insurance, the donor is responsible for any complications that may appear later.  They shouldn’t have to bear that expense. 

 

2.    Families of deceased donors should receive an amount not to exceed $10,000 to be used only for funeral and related expenses.

 

These payments could be financed a number of ways.  One might be a small surcharge (50 cents) for all drivers’ licenses in the fifty states or we could also involve the private sector and/or utilize other fund raising efforts to help raise the money.        

 

I know full well that this two-tier approach will be difficult to accomplish and may take awhile.  But at least it offers a solution to an ever broadening problem.  Since 1984 the effort to obtain more transplantable organs and tissue has depended entirely on altruism, on people who will do the, “Right thing.”  We have been very patient as a nation but it is now twenty four years after the first donor registered and more people are dying on the waiting list than ever before, fewer than two out of 10 U.S. families donate the organs of relatives after death.

 

It is time that politicians, regulators, opinion leaders and ethicists opened their eyes to what’s happening.   As long as we cannot decide what to do, we will have decided to do nothing, and good people will continue to die. 

 

 

Please read and comment on my World Wide Issues  blogs on http://blogsbybob.wordpress.com.   Also…visit my Facebook site, Organ Transplant Patients, Friends and You at  http://tinyurl.com/225cfh  OR — my Facebook home page  http://www.facebook.com/home.php

 

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Presumed Consent’s Time Has Come


Presumed consent simply means that everyone is presumed to be an organ donor unless they opt out.  Under our current system no one is presumed to be an organ donor unless they opt in.  That is the altruistic approach, “It’s the right thing to do so everyone will do it.”  But they don’t, and around 100,000 people have died since 1995 waiting for people to do the “right thing.” 

Presumed consent’s time has come.  Don’t ask me why, but the ethicists, the numbers crunchers and those who are so smart they can tell us what to think, say presumed consent is highly controversial, faces innumerable roadblocks, will take a long time, cost a good deal of money and in the end won’t work.  To prove their point they will show you thousands of pages of Excel spread sheets that will cause you to get dizzy and fall on your head.  I’ve always thought that if you torture numbers long enough they’ll confess to anything, these folks prove it.

We know that some very powerful, influential people and organizations will vigorously oppose presumed consent because they are anti-almost everything, mostly they are think tankers, bureaucrats, professors of obscurity, editorial deep thinkers and ethicists.  None of them eat or drink, they unplug from the wall each morning and join their counterparts in a breakfast of toasted standard error, poached average deviation and a dollop of confounding factor. 

These same negative thinkers existed when President Kennedy said we were going to the moon, a somewhat understandable conclusion being as no one had ever done it.  King Ferdinand of Spain didn’t have a plan either when he funded Columbus’ journey across the “Ocean Sea.”  But with presumed consent there are existing plans — the ones used by Italy, Spain, Belgium, Norway, France , Finland, Austria, Switzerland and Sweden.  In the  20 years since Belgium adopted a presumed consent policy less than 2 percent of the population has registered an objection to organ donation that is 98 percent acceptance http://virtualmentor.ama-assn.org/2005/09/pfor2-0509.html  (The UK, incidentally, is seriously considering adopting a presumed consent program).

This is America folks.  We don’t give up!  Where we would be if we quit trying every time someone in authority said, “It can’t be done.”  Most certainly, there would be no USA (breaking from the British Empire? — Impossible!).  We’ve always been surrounded by people of great power with absolutely no vision, for example:    

 “I think there is a world market for maybe five computers.” Thomas Watson IBM Chairman 1943,     

 “Everything that can be invented has been invented.” Charles H. Duel, Commissioner U.S. Patent office 1899,

“We don’t like their sound, and guitar music is on the way out!” Decca Recording Co. 1962 as they rejected the Beatles.  

There are always naysayers, “Can’t be done” people.  It’s about time we told them to crawl back into their black holes of negativity and stay there.  We don’t need negative thinkers, we need problem solvers.  In the mid to late 70’s I worked for Minnesota Governor Rudy Perpich who told me that if I ever brought him problems he’d fire me.  “Bring me solutions,” he said, “And together we’ll choose one that will work.”  My God, what uncommon common sense.   

 The organ shortage in the U.S. is so severe that each year the gap between available organs and the number of people who need them continues to widen.  It is so bad that as many as 19 people die every day while waiting.  Think about real, not statistical death.  Real death is 19 funerals, 19 grieving families and 19 good people forever gone.  This is not about statistics it is about real people and the most profound of human issues, living and dying.  To allow the technocrats to reduce this national tragedy to columns of numbers is shameful.  Shame on them for doing it and shame on us for not standing up to them (I wonder if any political candidate has given any thought to naming a Secretary of People whose only job would be to remind government types that we are people with names. I don’t know anyone named 27 or 1,000,006, do you?).    

Do the math, the longer we wait to try something new the more people will die.  Each of us shoulders the responsibility of helping to tend to the sick.  Isn’t that a major tenet of almost all religions?  Since when did Americans see their neighbors dying and refuse to help them?  As Mark Twain said, “That’s un-American, it’s un-British, it must be French!”   

It is time for action, time to take some chances, make a mistake or two, but we must try!  I can’t remember who said it but the quote went something like, “If you’re not making mistakes you’re not trying anything!”  I’m not asking for us to take shots in the dark in hopes we will hit something, but rather to use the experiences and the evidence developed by knowledgeable people around the world and put it to use.  We don’t have to reinvent the wheel, we just need to add a wheel to the one we have so the carriage can move?  

Altruism is the current coin of the realm.  Supposedly it is the ideal motivator for organ donation even if it doesn’t work, which it doesn’t.  The mindset among the people who make these decisions is, “Yeah, presumed consent might work in Spain but not for long.  Just wait, it will fail — you’ll see!”  And then they crawl back into their depressing holes to return to crunching their nameless, faceless, emotionless numbers.   

The American transplant list is not just a list.  It is thousands of people who are dying.  Doesn’t that fact impress these green visored gnomes?   You or someone you love could be on that list very soon.  Don’t we owe these dying people something?  How would you feel if you were on such a list and you knew that no one was doing anything to make the list of donor organs exceed the list of people who need them.  That’s what it will take you know.  The number of available organs will have to exceed, not just meet, the number of people on the waiting list.  That is the only way we can stop the dying.

An added note and perhaps the subject of future blogs.  Maybe, just maybe there is no one solution.  Maybe we need to combine solutions.  How about a presumed consent/financial incentives approach?   Think about it.  Or, as one of our readers commented, “Cloning is a viable option. — we have the technology.”

Peace 

Controversy: Should We Take Organs Without Consent?


In my on-going effort to promote organ donation I’ve found that the altruistic approach, (doing one’s civic duty) while admirable, has not done enought to increase the number of available organs.  Thousands are dying each year because the number of people needing organs is outpacing availability.  Something must be done!  In that light I have embarked on an effort to explore alternatives to altruism.  Today’s blog explores one of them. 

Implied or presumed consent is the norm in several European countries and the Prime Minister of England has stated that he would like the system in place by the end of the year.  In effect presumed consent means that unless you have pre-registered your desire NOT to be an organ donor, your organs may be taken upon your death with permission from no one.  The idea is has been studied in the U.S. for some time with the idea that adopting such a policy might cause a significant increase in the number of available organs.

OPTN (The Organ Procurement and Transplantation network) is a part of UNOS (United Network for Organ Sharing) the Government regulated organization that matches available organs with those who need them.  

In 1993 an OPTN committee determined that such a policy was not appropriate at that time.  But now, it is 15 years later and the need for organs is far outpacing the supply.  Is it time to begin considering presumed consent again?  Below are the OPTN pros and cons.

OPTN URL:   http://www.optn.org/resources/bioethics.asp?index=2

 Excerpt from OPTN, the Organ Procurement and Transplantation Network:

Advocates of presumed consent advance the following in support of their position:

  • Efficiency is Good. Increasing the supply of organs — that is, supply-side efficiency — is a worthwhile goal. It is sufficiently important to collect more organs that other goals and values, within limits, may be compromised;
  • Asking for Consent can be Cruel. Presumed consent would obviate the need to ask the donor’s family for consent at a time of family’s painful grieving.
  • Individual Conscience Can be Respected. Presumed consent respects the principle of individual choice by giving objectors to organ donation an opportunity to empower their anti-donation preference;
  • Individuals Owe Society the Effort to Register their Objection. Individuals who object to organ donation should be burdened with the task of registering their preference to the public authorities because organ donation is, presumptively, socially desirable. The burden of communicating objection should be placed on objectors to organ donation.

Presumed consent, advocates argue, combines the principles of supply-side efficiency, respect for individual conscience, and individual’s positive, yet qualified, duty to promote the good of society.

Opponents of presumed consent base their position on the following presuppositions:

  • There will be false positives, that is, persons who were ‘presumed” to consent but who, in fact, objected to donation. Under a policy of “presumed consent,” some individuals who do object to organ donation in principle will not register their preference with public authorities because of one of many factors. For instance, individuals on the margins of society might not learn of their option to register their refusal. Furthermore, individuals have differential access to the mechanism for registering refusal, as in the case of itinerant persons who may not receive a postcard informing them of the opting-out alternative
  • Problems in Registering and Transmitting Objection Status. The mechanism for registering and transmitting objection status is likely to be inadequate. Only a nationwide database of objectors is ethically justified because individuals may suffer irreversible cessation of brain function outside their state of residence. There is uncertainty whether mailed-in objection notices will be entered on the database and whether the information will be distributed to organ procurement organizations in a timely fashion.
  • Individual Autonomy Speaks to a Core Value. Asking individuals to publicly express their objection to donation does not respect the individual’s right not to choose. Individuals do not have a social duty to express an objection.
  • To Decide Whether to Consent is Not a Dichotomous Choice. Individuals should have the right to delegate the decision to family members. Presumed consent would authorize collection of organs of a non-objector who had trusted his family to make the decision.”

Once again I am asking for your comments.  Increasing the number of organs is a real matter of life and death.  One over which we have total control.  We must continue to talk, but we also need to do something — we need action.  My action is to get people to think and then pass your comments on to policy makers and opinion leaders across the U.S.  What’s yours?  What are you going to do?

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