Thursday, February 16, 2006

The ethics of presumed consent

A private member's bill introduced in the Ontario provincial legislature on Thursday by New Democrat MPP Peter Kormos, says that Ontario hospitals should be able to freely harvest organs unless a dying patient objects beforehand. Kormos says the aim of his bill is to reduce the number of people who die awaiting transplants.

The policy advocated in the above bill is known as Presumed Consent. Presumed Consent as public policy means that a clinically and legally indicated candidate for cadaveric organ and tissue recovery is presumed to have consented to organ and tissue recovery if he or she had not registered a refusal. Also, there is no allowance for the donor's family to be involved in the donation process.

What prompted me to write this piece was several e-mail's I received about an interview by radio personality Andy Barrie with the CEO of Trillium Gift of Life Network, Dr. Frank Markel. I did not hear the interview but was given to understand that Mr. Barrie was an advocate for the private member's bill and opposed to existing Ontario government policy.

I personally do not advocate Presumed Consent but instead like the new strategy of Trillium Gift of Life Network (TGLN) in effect in Ontario, Canada since January of this year (RNR). RNR helps identify potential donors and ensures patients/families are given the opportunity to make an informed decision about donation, thus improving current donation rates and saving more lives.

Routine Notification and Request (RNR) is designed to maximize organ and tissue donation in Ontario. It is a provision of the TGLN Act passed in 2000, with the implementation of the RNR program in January 2006.

Under RNR guidelines, designated facilities report to TGLN when a patient has died or death is expected by reason of disease or illness. Once eligibility has been determined, the hospital then approaches the patient or the patients' family to discuss donation options.

Some countries have increased organ and tissue donation rates through a "presumed consent" policy, such as Belgium, France, Austria, Finland, Denmark and Singapore but their policies approximate "routine salvaging of organs".

Our society assumes that the individual, not the state, should control his or her physical disposition. Our society respects this principle by asking for the consent of the donor before organs are recovered.

This is my opinion. You can find many other opinions elsewhere and the best discussion I've read on this is in "A Report of the Presumed Consent Subcommittee, United Network for Organ Sharing Ethics Committee."

Please go the following link for this in depth analysis: Evaluation of the Ethics of Presumed Consent

Do you have an opinion on this? Leave a comment below.

10 comments:

Anonymous said...

Hi Merv; I like presumed consent. In Spain every child born is automatically registered as a donor, unless the family objects for religious or other reasons. As the child reaches the age of reason he/she can decide if they wish to be removed from the list for cause. Perhaps because of this , Spain has a ridiculously low waiting list, something less than two dozen patients. Just a thought.

Barry Chadbolt said...

Hello Merv

I also heard the interview on CBC this afternoon and whole heartedly agree with the idea of "presumed concent".

There are just too many individuals who have to wait for what seem like forever.. and in some cases they die waiting and or because their window of transplantibility closes then they die.

For my part i was lucky having a common lung size and blood type my wait was only 7 week for a bilateral lung transplant. We both know people at Toronto General Hospital and around the world who have been waiting more then 2 years for surgery.

This act would put an end to the unnessary and painful situation.

The potential doners (of which i am one). The idea of presumed consent should be no different then the idea of death and tax's. We all have to face these issues sooner or later. Why not pass on part of your self to some else and let part of you live on for many years to come.

Barry Chadbolt
double lung May 1/2005
Brantford Ontario

Anonymous said...

We all know this is complex. After much reading and discussion prior to my transplant I'm definitely in favour of presumed consent with rigorous procedures in place around time of harvesting to fend off rare & potential "trigger happy" docs. We need to be more assertive in this life-saving issue. Too many people are dying and too many healthy organs are waster. With respect in response to Barries outline of proposal I felt Dr. Markell did not put forth, or did not get to put forth a substantive position to address the serious issue we have other than talk of the "conversation with family" and "watch" them for the future.
We need to publicly debate and discuss as much as possible.

Vivian Rosenberg
Double Lung Recipient April 21-05 with gratitude and appreciation every day

Kurt Penner said...

Merv - The interview ( and similar ones across the province ) was in response to a Bill that was introduced today, in the Ontario Legislature. The M.P.P. for the Niagara area has brought forward a private member's bill to enact presumed consent. I expect there will be lots of interesting debate on this issue in the coming days, both in the Legislature and the media. - Kurt Penner (double-lung transplant recipient, 2002)

Anonymous said...

Hi Merv,

My Mom just received her new lungs after waiting a little over a year (rare blood type, small lungs). She is struggling with them and was told she was so sick before she received them she would have a tough road ahead. Maybe if she had received them earlier, it would have made it a little easier. Perhaps there could be a middle ground. If a donor card is found on a potential donor, I don't believe at that point the family should factor into it. It was obviously that persons wish. If no card is found, then I believe the family should be consulted. I realize there is much work to do to get more people to sign their cards, but even if some of those families who over-ruled the cards had not been able to, there would be at least a few extra transplants done. I do agree with presumed consent, but if it doesn't happen, how about a compromise? Chrissy Busscher

Merv Sheppard said...

As a result of yesterday's announcement that NDP MPP for Ontario Peter Kormos introduced a private member's bill advocating a presumed consent policy for organ and tissue donation in Ontario, letters to the editor in many major papers include a wide range of opinions about what our organ and tissue donation policy should be. Following the introduction of the bill it was reported that several other Liberals, New Democrats and Conservatives, including Health Minister George Smitherman, said they would vote for the bill because too many people die while waiting for a transplant because an organ's not available. It would appear that a free vote in the Ontario Provincial Parliament will stimulate lively debate. Whatever the final outcome is, I hope that any new policy will have all the safeguards to prevent the wholesale salvaging and trafficking in organs that is suspected of taking place in some countries. See the U.S. Department of State's report on The Sale of Human Organs in China. Merv.

Rebecca Skiffington said...

Hi Merv (& all reading this),
First off thank-you Merv for offering a place to discuss this very important & somewhat controversial topic. Since my husband received a double lung transplant I tend to have a biased view on the "presumed consent" bill. I personally think it is a great idea. But even when I step back & look at it from a totally unbiased side of things (& I like to think I can do this haha) I still feel the same way.

I think one of the downfalls regarding organ donation is the lack of information & advertising that the general public hears.
Often people say that they just "haven't gotten around" to consenting for organ donation. I strongly feel however that if someone were against donating his or her organs, making this decision known would become a priority.

I hope this doesn't come across the wrong way, but people tend to take action when they will be directly effected. It's human nature.

By offering presumed consent there will be no more "missed opportunities" from potential donors who just “never got around to” signing their cards or informing their families.

I believe it's a win, win situation. More lives will be saved and less viable organs will be "wasted". Families will no longer have to make that, often heart wrenching, decision at an extremely difficult time.

So I am all for "presumed consent". I am also going to let my local MP, MPP and the Premier know why I believe this is a great idea. A bill like this will need a lot of support from the community & voters as a whole.

Just my 2 cents - thanks
Rebecca Skiffington

Ricardo said...

Waiting for a ‘Gift of Life’
I was Given Life, only because someone bothered to ask and a very special family said yes. Indeed, I was very fortunate for not everyone gets their transplant in time. In a perfect situation, our current system looks great, but it is just not happening 100% of the time.
You cannot find much argument with a system such as Spain's 'presumed consent'. It managed to obtain 33.6 organs per million of population in 1999, compared with only 9 per million in Toronto (2003 figure.). We in Toronto are the hub of Canadian transplantation and are fighting hard to change this paltry average.
If it works in areas of Europe, let’s make some changes ASAP.

Dick Winter
Liver TX 1990

Dick said...

Waiting for a ‘Gift of Life’
I was Given Life, only because someone bothered to ask and a very special family said yes. Indeed, I was very fortunate for not everyone gets their transplant in time. In a perfect situation, our current system looks great, but it is just not happening 100% of the time.
You cannot find much argument with a system such as Spain's 'presumed consent'. It managed to obtain 33.6 organs per million of population in 1999, compared with only 9 per million in Toronto (2003 figure.). We in Toronto are the hub of Canadian transplantation and are fighting hard to change this paltry average.
If it works in areas of Europe, let’s make some changes ASAP.

Dick Winter
Liver TX 1990

Merv Sheppard said...

The new system that went into effect in Ontario this January, is very similiar to the one that's been in effect in the Philadelphia area (with a population about the same as Ontario). They have a donor rate of 33.1 per million population compared with Ontario's 13 per million. It's the most successful program in the U.S. and is called the Gift of Life.

Many readers responding to the recent post about a new system of Presumed Consent proposed for Ontario said they liked the idea, mainly because there is a shortage of tissues and organs and too many people are dying while on the waiting list for a transplant. Some quote Spain's example where over a 10 year period organ donation in Spain rose 146% to 33.6 donors per million population. People automatically assume that Spain has an "opt out" system similiar to the one proposed for Ontario. But Spain's "presumed consent" system is not enforced. In fact, Spain’s laws and practices respecting organ donation are similar to those in the U.S. and Canada. Following brain death, organs can only be retrieved after obtaining consent from the family, and no compensation can be provided for donated organs.

The increase in organ donation in Spain was not driven by statutory changes, and there has not been an increased reliance on living donors to fill the donation gap as in Canada and the U.S. Almost all – 99 percent – of organ donations in Spain are from deceased donors. Spain’s success can be attributed to the creation of the National Transplant Organization (ONT) in 1989, and its network of specially trained physicians who are paid to work as hospital transplant coordinators. These physicians work part-time as transplant coordinators while they maintain their medical practices –primarily as intensivists or nephrologists. These physicians are responsible for identifying potential donors, managing donors and approaching families.

The law in Pennsylvania stipulates that every death in a hospital must be referred to Gift of Life in order to determine if the person's organs are suitable for transplant. It is not up to medical staff – doctors and nurses – to persuade families to allow relatives' organs to be used for transplants. If there is a suitable donor, a trained co-ordinator from Gift of Life visits the hospital to seek the family's approval, but only after the attending physician has told the family the patient is dead.

The "presumed consent" or "opt out" system being proposed for Ontario doesn't sound very ethical to me. What if someone for religious reasons, for example, does not want their organs removed? They may not know of the requirement to sign a document saying they do not want their organs removed in the event of their death.

Now that Ontario has in place a program similar to Philadelphia's in many ways, why not give it a chance to become successful with the potential to achieve the same organ and tissue donation rates? This way, families will not be taken out of the decision making and can still be involved in the donation of their loved one's organs and tissues. I think it's a win-win situation for all concerned. Merv.