Monday, March 14, 2016

Presumed Consent and Organ Donation

There has been some significant discussion in the last couple of weeks surrounding the concept of Organ Donation and Presumed Consent.  To put this discussion into context we need to understand what presumed consent is, as it applies to organ donation is.

The presumed consent or opt-out system allows people to register their unwillingness to donate after death. If there is no registered opt-out the default or presumed position is that they wish to donate their organs.
Koffman & Singh 2011
Ann R Coll Surg Engl. 2011 May; 93(4): 268–270.

That’s it!  Instead of the present system where you or your loved ones have to declare your intent to donate organs the reverse occurs where it is assumed your consent is assumed unless you or your loved one’s indicate otherwise.
This subtle difference is significant due to the reality that the demand for donated organs far outweighs the availability of donor organs.  People die waiting for a donor organ.  Does presumed consent increase the number of the available organs.  Yes.  Studies indicate that in this type of system organ donation does increase.  One study is cited below, but it is important to note that other factors do effect the increase in donations.   
In the four best quality between country comparisons, presumed consent law or practice was associated with increased organ donation—increases of 25-30%, 21-26%, 

 Presumed consent alone is unlikely to explain the variation in organ donation rates between countries. Legislation, availability of donors, organisation and infrastructure of the transplantation service, wealth and investment in health care, and public attitudes to and awareness of organ donation may all play a part, but their relative importance is unclear.
BMJ 2009;338:a3162
Those who know me and know my family’s story often bring up the subject of organ donation with me.  We have been through the process once (Russell) and the possibility does exist that Susan could go through this process as well.  This issue hits very close to home.  What some may not know is that we know the circumstances under which Russell’s donated heart became available.  We also know a family who donated their child’s organs several years ago.  When Russell was listed for transplant I had a lengthy discussion with this family about the process they went through.  It helped me understand the gravity of the situation and be able to sympathize with a family posed with the question “to donate or not to donate.”

Dispelling Myths

Organ Trolls do NOT exist

Some people believe that if you sign your donor card or indicate a willingness to donate your organs that there are ghouls who roam hospital corridors looking for willing donors to abscond with their organs.  I have talked to many First Responders and Emergency personnel who unequivocally state that they have never looked for an organ donor card or ever given a second thought to doing anything than saving someone’s life.  Many medical professionals do not even know how the process works.  They have no secret phone number they call when they think they may have a ”suitable candidate.”  All of this behind the scenes work is done by the appropriate organ donation organizations.  The idea that appropriate medical might be withheld from a person just to harvest their organs is absolute balderdash.  To summarize, if you are unfortunate enough to sustain a life threatening injury the medical staff has an ethical, legal, and moral duty to do everything in their power to save your life.  The consideration to donate organs is only discussed after the medical team has done everything in its power to save you and has exhausted every avenue.  This is when the discussion to donate organs can take place and NOT before.

Families cannot be cut out of the decision making process

Another theory I hear again and again is that if you declare your wish to donate your organs that the family does not need to be contacted or asked if they agree with the wish to donate.  This is not true.  If family is available and is competent to make a decision they will be asked for consent (even if a signed donor card exists).  The family can counter the wish to donate.  Even if there is a signed donor card the family can rescind the request and the medical staff will respect the decision of the family.  Families are always respected and consulted.  This is especially important when you consider presumed consent.  Even if legislation were passed to enact presumed consent.  It is still incumbent on the transplant team to discuss this with the donor family.  If at that point they refuse, then again the wishes of the family would be respected.  Presumed consent is not a license for Doctors to do what they want without consulting families.  Any law that would take away this right of donor families I would vehemently oppose.

From my statements above, some may ask, why presumed consent can make a difference.  If families can still refuse what difference does it make?  I think presumed consent changes the conversation.
It must be one of the most difficult tasks for anyone to go to a family that is in the midst of a crisis to ask them if they would consider organ donation.  Something I would never want to have to go through.  I think having presumed consent in place can take some psychological burden off of the family.  Being a family and to actively make the decision to sign paperwork to allow organs to be taken and used for organ donation must be a huge psychological burden.  If presumed consent is in place it places less burden on the family.  They can simply not oppose.  It may not seem like a big difference but given the magnitude of the decision I think it does have an impact.  Anything that makes that moment easier is huge.

Organ Donation is an amazing process.  It encompasses strong emotions for those who experience loss and those who receive a monumental gift.  What makes this issue even more difficult is when people do not have factual information on the topic.  This has become abundantly clear as I hear people call into radio talk shows.  I hope people get better informed on this issue.  What I have stated above merely scratches the surface of this issue.  I just thought it was good idea to share some of our experience; having been through the process.  It is a conversation worth having.

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