Last week our government defeated a bill that could change the lives of many. Did they do it as some articles say for “partisan ” reasons ? Or do they really have other plans and much money put into provincial donor registries ?
This bill was defeated by the governing party, the Liberals being the majority of the Nays. The bill was a ” private members bill” from MP of Edmonton Manning, Alberta Ziad Aboultaif (Members Bill, C-223) which was to introduce legislation to establish the Canadian Organ Donor Registry and to coordinate and promote organ donation throughout Canada.
The purpose of this Bill was threefold:
- To establish the Canadian Organ Donor Registry, a compilation of information on organ donors and recipients and a system that links to compilations held by third parties.
- To develop a national strategy to promote organ donation in Canada and facilitate the exchange of information on organ donation between provinces. Canada is the only developed country without national organ donation legislation, such as the 1984 U.S. National Organ Transplant Act.
- To mandate an annual report.
This to me the important part of this is having a compiled list of those that wish to donate upon death that can be accessed in case the need arises. There is much work in my opinion to be done for efficiencies in the transplant programs, but that is another subject.
In Canada, deceased donor kidney transplants are distributed provincially, but other organs from deceased donors are distributed nationally and that registry works very well. A national registry for those with high antibodies needing a kidney transplant was established in 2014- again a good move.
I believe a nationwide donor registry is can and will help to save lives. Canada has a dismal rate of transplants at 23 per million, (this compares to the USA at 34 per million, or 50 per cent higher.) According to Dr. Phillip Halloran, professor of medicine at the University of Alberta and editor emeritus of American Journal of Transplantation and chair of the Swiss-based Roche Organ Transplantation Research Foundation, Canada is in the lower third of all developed countries, certainly below 50 per cent, of donation activity per population.
So why is this ? First of all since our health care is provincial in jurisdiction ( with some federal mandates ), each province can decide how to register their potential donors and a different system of procurement. This bill would not have changed the living donor rate or system ( though would have brought more awareness to that possibility) but would impact that deceased donor program and a national donor registry could change the face of transplants in Canada.
Lets just walk through a potential deceased donor scenario. First of all, to give a “solid organ” ( kidney, heart, liver lungs ) the potential donor has to be “brain-dead” – and yet have a beating heart and functioning organs. These are usually victims of a car accident or brain bleed or stroke, who arrive to the Emergency department on time to have been placed on a ventilator, as their brain is not telling them to breathe. At that time, or hours or days later, brain function is determined and if “no perceptible brain function” is determined, the patient is considered “brain-dead.” At this point, a nurse or transplant coordinator will approach the family and discuss organ donation. Usually, the wallet with the driver’s licence that may or may not display the patient’s wishes is not readily available or in the hands of a very distressed family member. This means the nurse or coordinator is starting from scratch – ” The very difficult discussion begins with ” do you know if your loved one ever expressed a wish to have their organs donated?” Fortunately (or unfortunately ) most families are not like ours – have discussed their wishes due to a personal relationship to a transplant. If the loved one has never discussed this, the decision must come from a very bereaved and distressed next of kin ( spouse, mother, father, daughter, son, sister brother). How difficult is that !!
Take a second scenario, same circumstances, but the nurse/coordinator can access a quick online registry, see that the patient has registered his wishes, and the conversation can begin from a different focus – ” I see that your loved one has placed himself on the donor registry, I am here to help you fulfil those wishes. The family may /will have some say yet, but rests easier knowing the wishes of their loved ones will be fulfilled. It becomes less of their decision and more of the person who will donate. I have heard many stories of those put in this tragic situation and knowing their loved one’s wishes made all the difference in how comfortable they were of the decision. Family rivalries decrease as the donor is dictating their wishes.
Other organs can be procured after death regardless of cause of death ( corneas to help someone see for example ). There are so many missed opportunities here. Again, the conversation can start from the donors wishes.
Our Federal Health Minister in her remarks to the defeated bill glibly stated that anyone can just go and register – so I tried to do that – HERE .There you can see that each province has a different way /route. Some like SK just have a voluntary paper ( and stickie that sometimes stays there ) that goes with your driver’s licence, others sign up with health care card, and some nothing. And if one of those residents happens to be in an accident in another province, there is no access to that persons’ wishes. If you click on Saskatchewan’s link you will see this:
I have a two very personal reasons for wishing a better way for this process to take place.
One being that my husband has spent 12 yrs on dialysis and we know the potential freedom a transplant would make. He was fortunate to receive a transplanted kidney in 2006 from a deceased donor. What an exciting and conflicting day that was. To know that someone died to give several people the gift of life was humbling and very emotional. Unfortunately the kidney my husband got was destroyed by a common virus and a high count of antibodies and other health concerns has made another transplant a poor option for him right now.
The other being my experience as an ICU nurse – where decisions like this were made, mostly in the transfer to a larger centre who did the actual conversation, but at times, we as nurses had to start the process with the doctor. I know opportunities are missed for both solid organs and other tissues.
The outcome of this vote was discussed in an article in Huffington Post which shows how much education needs to be done in regards to organ transplant procurement and donation. It appears that our MP’s missed the whole point of the registry. If 64 million dollars have been spent since 2008 on a national system – then where is it ??
This has been called ” petty politics” to defeat this bill and I am afraid it is. This bill could have been sent to committee for further discussion. Our Federal Health minister didn’t do the simple google I was able to do to stand informed. Shame on her ! Her comments were less than helpful.
I am upset – upset that we can change the words to our national anthem because a dying man requests it but cannot work toward something that can prevent many from dying.
The nature of a private members bill is that this member can only present one each elected term, so this will be a done deal for now. I guess the best we can do is express our opinion, hope for the government to present its own bill ( which it appears has been in the works since 2008 an 8 yr process !! ) Or to begin to see if our provincial legislation can be changed.
A start … enough ? I don’t think so but one must start.