Organ Donation Awareness Week

This is one of my favourite topics to draw attention to.

The annual week is upon us again – Apr. 22 to 28.

Something new to report is a website, https://beadonor.ca/ . It’s an online registry.

My family knows I don’t need my organs when I’m gone so I’d like someone else to make use of them.

It’s important both to register and let your family know your wishes.

About every three days someone dies waiting for a transplant, said Jane Tucker, president of the London Transplant Gift of Life Association.

What are you waiting for?

Above is a former wallet card the government created.

Has anyone gone to the registry site for a look or signed up?

Advertisements

43 thoughts on “Organ Donation Awareness Week

  1. It’s about time that the Registry was promoted by the Association.
    The Registry itself has existed for over 15 years as my Green OHIP
    of earlier years shows. It’s been online accessible for quite a while.
    It’s been appalling people have been told to “Sign a Donor Card”
    all this time when that wasn’t efficient. Who knows where a scrap
    of paper will be when their time is up ?
    A real virtue in the Registry and encoding on Green Photo card
    (or labelling on the old red and white card) is that when authorities
    access your card, the dying/deceased person’s intentions are
    available for all involved, and have been updated. Who really can
    be sure who will be their nearest kin to have speak to the issue in
    the unforseeable future?
    It is amazing how media have undermined the Registry, still going
    about a “donor card” when providing publicity to various human
    tissue donation interest groups.
    You might see if you can get more on the history of the Registry, as
    only a repetition of the longstanding nature of it will finish off the
    phrase “sign your donor card”.
    Driving licence renewers are being asked about this a vistor tells us
    showing her new encoded Green Photo Card. Not long ago OHIP
    staff on York St. weren’t asking, but had the yellow form available
    at the busiest point in their system.
    So talk to your kin about the possibilities and find out what their
    personal attitudes are to the various options of treatment of your
    remains, or the transplant issue involving living persons.
    Still have a relative’s Eye Bank card from 45 years ago which was
    in the wrong place at the wrong time – and up against hospital
    unwillingness to fund tissue retrievals.
    Another thing to keep in mind is that you may be willing, but not all
    offers are take up when the time comes. This topic needs further
    explanation so keen kin don’t feel cheated when deceased does
    not used for this good cause.
    And of course, there may be a list of transplant needers, but is
    no guarantee a suitable person will die in appropriate timeframes.
    Guilt doesn’t work, nor crying children in ads. Being knowledgeable
    about how the system works in this province in case you are called
    upon suddenly to be decisionmaker does work toward this good
    cause.
    How many groups have an interest in the various types of harvesting?

  2. Would a change in the Week’s name help? We can’t donate just
    because we feel like it and approve of the procedures, as we can
    with cash to disease fundraisers. Title doesn’t tell us what to do.
    What about gearing marketting to the week’s awareness goal of
    getting Ontarians 16+ registered in case they someday become
    eligible for harvesting and kin at that unknown future time must
    make a decision to endorse or refuse consent.
    Remember it may never happen, just an insurance of sorts that if
    your number does comes up, you’ve efficiently recorded “Wishes”
    for the guidance of whoever is next-kin then..no longer parents, maybe
    not even a spouse or a child of a sibling…someone yet unborn…?
    Remember donors noted in publicity as being 90 and 102 years old.

  3. Hi OHIP Donor,
    I could change it but that is the name of the week. There is a number of stories that come up by typing in Organ Donation Awareness Week.
    Thank you for letting readers know that just because you want to donate doesn’t mean organs will be accepted or used.

  4. It seems to be ‘National Donor Awareness Week’ but in
    Ontario we find Minister Matthews using the competitive
    Ontario Trillium group ‘Gift of 8’ slogan here in London.
    [ – Deb Matthews ‏ @Deb_Matthews Reply Retweeted..
    ‘At LHSC today w/ 8 great organ donor recipients.
    I’ve launch my Gift of 8 page, u should too.]
    A concern is when one promises to handle one’s dying
    LovedOne’s expressed final desire to be “harvested”, and
    it doesn’t happen, one is left with a twinge of guilt at letting
    that dead person down.
    Public needs to be told clearly that it is an gracious offer only,
    helping a create a huge pool of possible givers to match
    with the needs at that time of death. Wonder how your schoolage
    children and friends interpret messages at school..

  5. My children have said they want to donate some organs but not the whole body and not the heart.
    But of course they don’t really think about death or really understand it fully so organ donation is a hard topic to disect (sorry about the pun).

  6. Well then children need to find out what the Human Tissue
    Donation system can use. It seems a logical subject in a class
    on health or whatever it’s called where they learn anatomy.
    Remember there is also Lliving Donor Transplantation so
    death is not the main focus. It’s more miracles of modern
    medicine.
    Why not the heart, which is often wanted for transplant ?
    Can they explain their feeling?
    Tissues also are harvested but this is not well explained.
    Don’t see a single interest group to promote it, even Eye
    bank system gone
    ‘Body to Science’ is not for everyone, although nowadays
    I hear one can get individual ashes back for a family burial
    vs. annual expense-free common grave one at Woodland,
    Anglcan backed)cemetery.Another thing is what really is
    the cadaver need nowadays ?

  7. It is hard for the children to articulate but I it seems to be one’s heart is associated in popular culture with one’s being. “He had a great heart; always helping others.” Or in hockey, “He played with heart.”
    I think they feel the heart is an integral part of their being on more than the physical level.

  8. Intriguing.
    ‘Heart’ in this sense is long familiar. Think Good Hearted,
    Soft Hearted, Faint Heart never won fair lady..
    But makes one wonder if it would be thrilling to think that after
    my time is over – circumstances permitting – my heart could
    beating on the breast of another, sort of a second life. Does it
    even suggest one should take care of one’s body better, so
    parts would be ‘Donor Worthy’.
    Off the poetry books for a hearty look at earlier references at
    the edge of my memory. Try that on kids – heart in literature,
    beyond Saint Valentine..

  9. I wonder if your children got to see children close to their own age who have had a heart transplants, they might change their mind…

  10. Hi Joanna,
    How are you?
    I think that would help. The whole process is difficult for them to grasp, but seeing a child who had a heart transplant might bring it home.
    How is your daughter doing?

  11. I am doing well! Thanks for asking Kathy. We’ve been very busy with NOTDAW. I recently started a volunteer group in Oxford County focused on raising awareness of this issue and we have made some great progress already. Ryley is doing very well! She is looking forward to participating in the Canadian Transplant Games again this summer in Calgary this time. If your family is free, you might consider attending the London Majors game on June 16. We will be there that night speaking about organ donation and Ryley will be throwing the first pitch. I have always found that by putting Ryley’s face to the issue, it really helps kids to understand she wouldn’t be here if it wasn’t for organ donation. But it is definitely a hard concept for them to grasp. Even this morning I was having a conversation with Ryley about what “brain death” was.

  12. Joanna – glad to hear from someone who has been on the receiving
    end of our longstanding offers to Donate if needed.
    -When youngsters see that another kid is recovered from transplant,
    don’t any of them take it further and deduce that another child had to
    die to make that organ available on the transplant “market”?
    And was the Ontario Registry a factor in the successful match that
    returned your daughter to health?
    Glad things are going so well for your family thanks to “miracles” of
    modern medicine. What year was that first transplant in South Africa?

  13. Kathy…our group’s website is http://www.lifedonationawareness.com and our contact info for our local group is oxfordcountyldaa@hotmail.ca. We also have groups in the KW Region, Niagara and Hamilton/Burlington/Oakville.

    OHIP 9Z…Because my daughter is only 6, most kids her age haven’t fully processed the concept that someone has to die. We have explained to my daughter that another child was going up to heaven and didn’t need their organs anymore so they gave their heart to her because she needed to be on this earth longer. As she gets older we get more direct questions and I anticipate that she will get those from her peers so we keep her very informed and involved so that she can be prepared for questions she may get. Though sometimes she comes up with questions that we never anticipated! 🙂 We also make sure that we honour her donor and their family and the decision they made to save lives even though they themselves were going through tragedy. Even before Ryley, my husband had already discussed that we would be organ donors and I know if the shoe was on the other foot, I would make the same decision as Ryley’s donor family did. As for the registry…no, Ryley did not benefit from the registry for a couple of reasons. One, the registry did not come into effect until after a Citizen’s Panel recommendation in 2007 which created a database with Service Ontario that registered wishes connected to your health card information. Ryley had her heart transplant in 2006. Second, we do know that Ryley’s heart came from the US so we benefited from the good relationship between the two countries in ensuring children’s lives are saved and no organs are wasted. And I believe the first human to human heart transplant was performed in 1967 🙂

  14. OHIP 9Z…just reading some of your past comments and wanted to clarify that what the registry does is lets families know that their loved one wanted to become and organ donor in the case that they had not had that conversation with their family. If the family is aware of their loved ones wishes to be a donor, 90% of the time they will go along with that. If the family is not aware, only 50% will make the decision to donate. That is alot of lives lost just because of lack of communication. Although the back of the green health card has said Donor Z9 for years, it was never recorded in a centralized database until the last few years that medical personnel could access and let the families know of their loved ones wishes. But at the same time, the family still has the final say even if their loved one did register because we do live in Canada and that would be against our culture to disagree with the family.

    • I realize the advantage of the OHIP card in telling the current
      responsible kin what I want if the situation ever arises. We got
      caught in the old Drivers Licence situation, one mismarked
      and it was very unpleasant. Time had passed and the senior
      member of the family was not long available when the person
      died, as had the original person who blindness got us thinking
      about the ‘GIft of Sight’ in appreciation of VAC and CNIB help.

      My understanding when opting into the Registry was that those
      who might be asked in the future to Consent to my choices even
      if at that moment in other provinces with different legislation or
      abroad would have access to my most recent code.
      A scan of the Card puts the information into their hands. And is
      available to that branch as people pass on and communication
      lessens and social norms change.
      My view is that the “family” one communicates with today may
      not necessarily be the same individuals who’d be available
      in the unknown future. That’s why I value the coded Card,
      after dealing with verbal and wallet card information in the
      old days.
      It’s not a “cultural” issue with us, but a willingness to accept an
      adult’s informed preferences if a situation of Human Tissue
      Act donation ever comes up. Obviously with a minor there
      is no OHiP card and parents need to discuss possiblility
      of a child being either in need or a likely donor candidate.
      Will certainly check if my Registration has always achieved
      what I intended, as my 3 year renewal comes up this year. I
      usually make a bit of production of Registering as potential
      donor as so few people in the waiting room seem to know
      about the opportunity to Register one’s wishes, reception
      desk doesn’t tell us or hand out the yellow form,and I need
      to know I have the facts right.
      The date when the Registry became efficient for authorities and
      kin would be interesting if you have it. I see online the Minister
      had Registered before we elected her as our MPP a decade
      ago.

      Kathy, you have a good chat going and you are surely raising
      awareness of the issues ..

  15. I did a bit of searching and it does not look like there was alot of fanfare about the central registry becoming available to the medical personnel to let your family know your wishes. This is what I did find from Aug. 2007: http://www.health.gov.on.ca/english/media/news_releases/archives/nr_07/aug/bg_20070803.html
    You’ll notice the part where it says: “Make available to hospitals information that identifies people who expressed their wishes to donate their organs after death. This will help ensure that individuals’ organ donation wishes are known and respected.”
    So I maybe incorrect in saying there was no registry. The MOHLTC had the information recorded, but that information was not shared with the people who needed it the most so that is why everyone still had to carry around the little wallet cards. And then with the launch of the online registry last year, it made things that much simpler. Especially when talking to the younger gereration who does everything online! Even my kids run around the house yelling “beadonor.ca!” lol Though my 3 year old it comes out more like “beadonor dopsy day” 🙂

  16. Joanna, glad you joined the conversation, and that I haven’t
    had to walk in your shoes. Going back to your earlier posting-
    What was wondering is how Other children you talk to react
    if/when they figure out that they could be the dead donor, not
    a lliving recipient. (Our children born earlier were well aware
    of childhood death, crib death, Rh, drowning in family/neighbors).
    -Reading the history of this online I am getting more and more
    confused. The old Human TIssue etc legislation got renamed for
    this Trillium transplant-overseeing provincially-appointed group
    a while back – not the perfect marketing approach ! Gift of 8
    is equally uninformative..
    Wish I could find my old correspondence with the Registry when
    Green Card was coded 15 years ago, updated several time
    since of course and copied to PA /C, executor nominees, kin.
    ,,Bernaard of South Africa did the first successful transplant
    heart after failures and Baker of the States was close behind.
    but need to read up on these history-makingl events in Centennial
    era.

  17. Interesting enough, I do presentations at high schools and many that I have done, when asked if they have registered as an organ donor or thought about it, most kids say no. Today I spoke at a high school where a good number of hands went up saying they had already registered. I wonder if it is because recently one of the students at their school passed away in an accident and the parents donated his organs. I think that when the kids can see real life examples of organ donation happening whether it be as donor or recipient and it is to someone their age or someone like Ryley, then it makes them think…and even inspires them. Where if they are not presented with that opportunity, then they don’t think about it because they think they’re pretty invincible.

  18. We are not talking about little ones now, 16 being the age
    of eligibility.. about grade 10. Strongly relate, because a school
    friend was killed on his new motorcycle, and friends visited
    his parents for a long time after -our neighborhood’s introduction
    to youthful death besides polio stories and war losses.
    Admire your efforts and Ryley’s “paying back” with the loss of
    personal privacy. .What is not clear is the likely age of
    any anonymous Donor – quite a range of age-eligible final-stage
    patients, isn’t there?
    Ideally upper schools, with parental approval might have Register
    Now campaigns, with information about the various reasons
    for needing tissue/organ and the broad range of use of
    “harvested” human material. This would engage the interest
    of non-Registered parents. ..The special interest agencies
    publicity overshadows for us the scientific side of what’s becoming
    possible in this field.

  19. Joanna, we are out of step a bit in postings. Thanks for the 2007
    lookup.
    We didn’t all carry around a ‘Wallet card’, as anyone could figure
    out the information on it won’t be available to their responsible
    relatives who live elsewhere unless you send them a copy of the
    dated pledge to think about in case they have to act some day.
    If they outlive me, which not all family members did/or will do.
    And need toupdate it occasionally as with other end-of -life
    information.
    For a long time anyone who gets their hands on my Green Card
    can see on the back what I told the ministry. Drawing it to clerks’
    attention each routine visits, found many didn’t know what I was
    talking about which turned me into a bit of an activist on the topic.
    Even nearby doctors were unaware !

    .

  20. PS it is also on my typed up personal information sheet,
    and have told pre-paid funeral people, so they can respond
    appropriately when they pick up my mortal coil…

  21. It’s great to hear you’ve given this so much thought! There is definitely a long way to go. This year has been an amazing year for media coverage on organ donation so hopefully we can keep up the momentum and get awareness out there. Typically heart transplants last 10-15 years so Ryley will likely need another one at some point so the motivates me to keep sharing her story. I want her to live a very long life! 🙂

  22. Kathy, a parting comment – let’s drop the phrase ‘Sign up’ which
    comes from the paper wallet card imagery, and remind those
    eligible to “Register”.
    Cheers.

  23. Also interesting to note what Facebook is doing in the US to register/sign-up organ donors…http://newsroom.fb.com/News/Organ-Donation-Friends-Saving-Lives-15f.aspx
    ideas that one could hope would also percolate to Canada and around the world. http://www.pcmag.com/article2/0,2817,2403832,00.asp

    After all, the need for organs is global…and needless to say, so far there is only one place in the whole known universe that can answer the appeal. All of us, as collective planetary residents here, we must all recognize our responsibility, each to each other, our fellow mortal, transient, and ever vulnerable, human inhabitants…and in essence learn to become “our brother’s keeper.”

  24. Let’s not confuse the issue with foreign and other provinces’
    legislation. One can only Donate/Receive within the framework
    of Ontario legislation, whatever it may be at the time of our or
    a significant relative’s die with a donation-worthy body, and
    Ontario funding rules. (Joanna may want to speak to the costs
    of going outside our system and how local doctors feel about
    doing the followup care.)
    The point of the Week was to get Ontario Registrations, to broaden
    Canada’s pool of possible organs and tissues. Most people approve
    in theory but few are bothering to put their wllingness to be harvested
    some time in the future on Ontario’s official record – the Registry.
    Glad Matthews approached you – what did you tell her?…hope
    she will read through this blog chat you’ve kicked off and see what
    issues are on Londoners’ minds that need clarification..
    Too much of the publicity was on happy recipients, too little on precise
    details of the giver side of the system.

  25. – Matthews is up to nearly 40% of her huge personal goal.
    Some people here listed their names but have no recruitment
    goals and just want to lecture others. A real turnoff.
    – Checked out the G8 re what 8 body parts were received by
    their celebrants and got this information.
    -Organs that could be recovered (based on test outcomes:
    heart, lungs, liver, pancreas, kidney, And in rare cases,
    stomach and small bowel. [5 + 2 ]
    -Tissues recoverable: heart valves, eyes/corneas, skin, bone [4]
    So still unclear what G8 group at an event up at Western apparently,
    received..
    If one moves to another jurisdiction or country, suppose we should
    put our intentions on its Registry if any. Our farflung kin seem to be
    under somewhat different rules .
    Well done Kathy, you’ve proven people like to discuss the complexities
    of the system, a goal of any Awareness Week.

  26. Is there any information as to whether our Royal family supports and/or is registered with an organ donation program?

    How about any religious leaders of any faith or hierarchy?

    What is the percentage of organ donors among our politicians? our military? males vs. females? What occupations, age groups and social position (i.e. doctors, lawyers, students, factory workers) tend to be represented or actually targeted for organ donor appeals?

    Moreover, in my opinion there should be more efforts directed to funding and finding wider support for stem cell research. Further strides regarding the engineering of replacement tissues and organs is the real future, seen along the line of the ground-breaking work at Duke University Medical et al .

  27. We can debate all the complexities of the system and who is and isn’t registered. There is plenty of information on the Trillium Gift of Life website on religion and the views. All major religions support organ donation. If you google the pope you will find a quote where he endorses organ donation. But to me what it comes down is basic human compassion. If someone was dying before your eyes and you could do something to save them, would you? Then if so, do it when you die and no longer need those organs from your body. And since you won’t be able to speak at that point to tell people that’s what you want to do, tell them now. It doesn’t matter how much money it costs. Yes, our system needs to be improved. But the bottom line is, lives need to be saved. So what are you going to do to change that? You register, you talk to your family and you talk to other people about the issue. And you help to create a culture of compassion and caring. My daughter is the first in the family to actually receive a heart transplant. We discovered after her diagnosis and transplant that 3 family members before her, died waiting for a heart. One was 9 years old. 3 other family members were affected by the same heart disease but were never listed. And now my cousin who is 25 years old, a young mother, is waiting for a heart and has been waiting for 2 years now. My family’s lives actually depend on the generosity and compassion of others making this decision. So yes, we’re one of those sappy stories that are used to get people to register. But that is apparently what it takes to get people to realize the importance of registering and talking about it. In the words of Nike….Just Do It! Register!

  28. Right on, Joanna.
    If the bell tolls tomorrow for someone for whom your
    views would be sought to allow organ/tissue removal,
    are you ready to make a decision, be it parent, sibling,
    spouse, child?
    *Register, understand what it means, copy the coding to
    relevant kin. [And update it as time passes and nearest
    kin change. Registration documentationcovers situations
    where one cannot instruct those likely to speak on your
    behalf.]
    Then, if the shoe is on the other foot and one of the above
    – or you yourself – is declared in Need of organ or human
    tissue, you will appreciate the Ontario recorded pledges of
    thoughtful strangers. And accept with a clear conscience..

    Good Week work Kathy. Now into the merry month of May.

  29. Joanna,
    My question is about who participates, not who “endorses.” Endorsing is not the same as participating? Wondering if the Pope is registered? How about the Queen and her kin and anybody else of power and high society status (and not necessarily celebrities) who endorse the program.

    Of course tissue donation with the so-called Royal blood, or Holy blood, coursing through common veins might be somehow anathema to some harbouring irrational mythic illusions on those subjects. This is just one part of the steep curve of ignorance that inhibits a commitment from those in quarters of privilege to participating in scientific progress.

    I’m glad your daughter received a heart.

  30. Anyone P.I. – what’s relevant to the Ontario Registry is
    Ontario registrants.
    Foreign countries are outside its scope.
    If you want to know if the best people have registered,
    start with Rideau Hall and the extended Johnston family.
    They will of course want to know if you and your kin are
    registered in Ontario. Which is more than Ryley’s family
    or Kathy’s followers yet know about you. -30-

  31. For the philosophically inclined amongst us: perhaps we can contemplate whether there should be formal societal incentives to encourage organ donation.

    How about immigration preferences for those willing to donate a kidney upon being granted citizenship. Perhaps, forgiving those with murder convictions, vehicular manslaughter, or child molestation convictions in exchage for a irrevocable contract for donation of their organs upon their demise.

    What about a government pension to those who donate a kidney or an eye while still alive? This isn’t as preposterous as it may seem; afterall people who serve in the armed forces receive a pension when they loose (or donate) an arm or a leg to the cause and service of the country. Could there be a greater cause than the health and welfare of our neediest citizens? Why not then a medal and a cheque to those who answer the call on the homefront?

  32. If this were a BIO-ETHICS 101 class, we might participate in such a setting and state of mind by actually welcoming further examination of Organ Donation programs by considering the following:

    Why do we expect organs to be donated but surgeons and staff to be paid?

    What is the record of unsuccessful (rejected post-operative), failed (due to doctor incompetence), wasted (lost, late arrival, and variously poorly handled and co-ordinated) organ donation protocol and what is the record on procedures by individual hospital facility, and province-wide as a whole?

    If there were on any given day, say 1,000 hearts available (because of wide-ranging awareness and donor registration) and there was say a needy 1,000 critically ill persons requiring such hearts, are there in fact sufficient trained and qualified surgeons immediately availble to facilitate all the needed operations?

    What if there were 1,000 hearts available but only 500 persons waiting…what happens to the overage?

    What happens when there are only 500 hearts and 1,000 waiting…who decides?…should the deliberations be part of public knowledge?…should there be a Public Policy with checklists and public verifiable provisions that proscribe the process of qualification/disqualification (in other words who can live and who must die)?

    A similar example as the one above: If there is one heart availble and a decision must be made between two potential recipients as to who should get the transplanted heart and what public benefit is served, who decides?…I.E…A very sick 9-year-old girl needs the available heart but her parents are Jehovah’s Witness, or Christian Scientists and oppose the operation on their own religious grounds, and claim they should be making a decision on behalf of the little girl (and in their rejecting the heart perhaps therefore sentencing her to imminent death). But on the other hand, there is a very healthy 29-year-old prisoner serving a life sentence who happened to be stabbed in the heart during a melee caused by substandard security and supervision conditions at a poorly run prison, he needs the heart to survive. What role does the public have to weigh the allocation of scarce resources to make the decision?

    Everyday, there are decisions and choices being made and they don’t happen by themselves. Should we therefore be satisfied by who makes the decision and how these choices are weighed when we as a public have little input other than complying with a donor registration campaign?

  33. @For whom the bell tolls,
    The “what’s relevant,” as you say, is in my opinion the part of the discussion that donation organizations avoid. Upbeat positive reinforcement and promotional awareness is not enough. Many donation web-sites skirt or completely avoid a complete explanation of ‘informed’ consent. How about full transparency… show a video of all the steps, the real-life ‘final talk’ and the decision process, the actual harvesting, the potentially harmful pre-mortem interventions necessary to preserve organ utility that may actually hasten death, include a complete medical definition of ‘end of life’ vs. ‘end of life support’; ‘brain death’ vs. ‘cardio-circulatory cessation’ and explain who ultimately decides and how that point is arrived at. One often reads that organs are removed only after ‘nothing more can be done’, but nobody explains that this is in itself an arbitrary and relative point on a continuum that depends on a variety of subjective standards (as is everything in medicine—doctors are the first to say, “Medicine is an art as well as a science.”)

    Isn’t it curious how ever so helpful organ donor websites seldom, if ever, provide helpful (I would say necessary) outside links toward encouraging a ‘campaign’ for the dissemination of a throrough understanding of what truly ‘informed’ consent means for such decisions? Nor ever assume any responsibility to link the public to further study or analysis via the mountains of professional journal articles where a wide-range of biomedical issues are again, thoroughly, rationally, expertly discussed in relation to medical, legal, moral, ethical, societal imperatives. The kinds of multi-faceted, intelligent perspectives that should provide a serious foundation for the examination of the many levels of complexities and considerations involved for individual, family and public policy decision-making.

    Things aren’t as simple as may be represented during feel good “Organ Donation Week” promos.

  34. Many have been considering these issues for nearly a half century
    since the first successful human kidney transplant was announced
    to the world. Skin reuse was developed during the wars. You are
    not opening new territory.
    However the topic chosen by the host was a cause she supports –
    the need for more people to register willingness to be a donor if this
    hould be requested some day, and to be willing to agree if asked to
    consent to donation from the body of a near kin.
    If “anyone” has personal issues with various competing publicity
    campaigns he could speak to the sponsors, as others do/have done..
    Perhaps offer his medical and marketing expertise, even financial
    assistance to carry them out.
    Meanwnile others here will take up Kathy’s message and Joanna’s
    plea to help build the largest possible pool of resources for when
    little Ryley is next put on a heart transplant wait list. Even the driver’s
    licence offices have finally decided to be more proactive according to
    news on TV.
    What’s unclear is the ‘anyone’ family will be among those names in the
    pool of those offering, or sitting on the sidelines. Something heartless
    in the approach to the issue in this context – undermining the host’s
    point of simple action, now.
    – Kathy, were at a hospital today and when the clerk read through all
    the OHIP background on the file, asked why she didn’t read out the
    Donor code too — such a fluster,,, not a procedure etc. Maybe we
    should all do this, until the system recognizes our need to know that
    they understand our position on this particularly when we are in their
    hands.

  35. Dear (symbol of period) “.”

    Let me just borrow your words: “…until the system recognizes our need to know…” and stronglly make the point that I agree with that sentiment.

    I submit: The system does not want us to know.

    Think about how relevant that statement is, especially following the heated earlier discussion here on post mortems. You’ll recall that someone else (or, the system) was making a decision as to whether an autopsy would be allowed to be performed.

    Aren’t you curious how our “system” doesn’t have an “Autopsy Awareness Week” that promotes and educates and offers quick/easy sign-up and registration for an autopsy. No sacchrin, maudlin appeals or exhortations for encouraging and supporting autopsies even though if there were an equivalent number of autopsies as the number of persons registered as organ donors, the field of medical science and care, diagnosis would advance exponentially. (this is a fact not just my opinion).

    The believe the “system” is making choices for us. That is why I am skeptical.

    I believe that the system of popularly accepted doctrinal ideas on Organ Donation policy needs full intellectual interogation by everyone, on every level, by you, me, every citizen, the expert, the professor, the reporter, legislator, the everyday public. Its not just a matter of supporting a cause as a matter of sentiment, or being a booster, being a fan, offerring as you say, “medical and marketing expertise, even financial assistance.” Of course it can be all that, but more importantly: critical thinking is the most vital, essential and necessary ingredient when pledging allegiance to any cause, or yes, even when being contrary, rejecting and oppossing it.

    It’s thinking, talking about, engaging in an informed, intellectual discourse, opening a full conversation as a society, as taxpayers and supporters and beneficiaries of an established public medical system…all must be heard, all have a right to challenge and confront established assumptions and dogma in the open marketplace of ideas.

    This is what this is here, afterall.

    For the greater public good of a society, I am for public intellectual intervention in shaping policy.
    Yes, many have written much and many technical milestones have been achieved in the fifty years since the first transplant but I don’t believe that over the same period, public policy on this topic has progressed as much, or has shown in practice to have become better-reasoned at sorting out some of the many untold failures and heart-aches.

    Even now, as we are on the cusp of when perhaps organs won’t be just donated, but grown (if you think the concept of organ donation was hard to accept, and devolp an informed following…we should want to see our governments and policy-makers, rather than avoiding and currently remaining silent on this, should start laying the financial and infomational framework to start the process of understanding and acceptance of any number of the possible ramifications that are no longer science fiction). I’m afraid the lag in knowlwdge ,will result in the lag for funding, and a lag in opportunities to guide and participate in the unfolding medical-ethical issues that will quickly be at hand.

    Issues such as: Should samples of cells and tissues be extracted from all citizens at time of birth?
    Should countries limit their citizens from participating, purchasing, selling, exchanging, organs and tissues abroad. Are organs and tissues sovereign?
    Who will control or have access to any of the latest techniques and technologies—poor vs rich; developed vs developing world; male vs female; fundamentalist vs communist, socialist, democratic or totalitarian systems of government?
    Should any government or nation have the right to prevent scientists and corporations from developing products, or stop individuals from participating in any number of techniques, technologies, or entrepreneurship involving their bodies or otherpeople’s bodies and tissues beyond borders.

    There are disparate policies, prohibitions and strictures currently on many of these issues.

    So don’t be dismissive of those offerring to discuss any number of different perspective on the topic here of organ donation, because there are many and attendant medical ethics issues that (pardon the word) bleed beyond what you may comfortably think.

    The public square welcomes all ideas, all comers whether controversial or already in-step with prevailing wisdom.

    As Socrates said, “The unexamined life is not worth living.” So examine away. Don’t shirk your responsibility to all of us…Sign-up and register to examine life.

    In not wanting to take a good look to examine the “system” well then maybe one might as well just opt for he hemlock and let the “system” win.

    Honest intellectual curiosity should be commended, encouraged, welcome. Not feared and censored and held suspect. The free examination of all ideas in the public square of ideas is the only way to separate vested interests, lies and special agendas, from the pursuit of truth and awareness. We must try to pursue an understanding of the choices, alternatives and all the elements that are influencing our personal decisions, to gat a better handle on what’s at stake, and to better get a stake in what happens in the bigger picture that affects us all.

  36. ..Until that hospital’s computerized data-checking format at Reception
    recognizes an incoming patient’s need to know that authorities there
    are aware of his/her Donor intentions, in case all does not go well …
    is that clearer?
    Not much time to philosophize if you or your loved ones are expiring and
    responsible kin have to make a quick decision for or against permitting
    harvesting —if it is asked.
    And those awaiting transplant, as many of us or our loved one may in
    the unknownable future, again doesn’t allow time to ponder larger issues.
    Feel free to organize an autopsy awareness week just as Transplant
    Canada promotes an Organ Donation Week. Interesting question of
    compatibility – Family OK an organ/tissue donation? OR keep the body
    complete for autopsy even if cause of death is pretty obvious
    -Organ/tissue removal does stop “body to science” donations. Registrants
    need to think this through when checking off coding boxes and advising kin of
    last wishes.
    Yeah he should have refused to take the hemlock and let them finish him off
    another way.

  37. Dear (symbol of period) “.”

    If you believe as you say, (that there is) “Not much time to philosophize if you or your loved ones are expiring and responsible kin have to make a quick decision for or against permitting
    harvesting” then I would say certainly, it would seem that the best time to philosophize,,.would be now.

    You might also be surprised to know how your choices (no matter how well-reasoned, as the case may be) are dependant on the choices that are made by others, whether directly or indirectly. Not to mention the time of day and who is available on call.

    I’ve been involved in plenty of end-of-life conferences and yes there is much philosophizing done (if you want to call it that) by doctors and hospital administrators, sometimes including the principal but more often their proxies. You may also be surprised at how trying and emotional it can become trying to navigate the disappointing pace, the strange considerations, the obliviousness to “time” (whose time is it anyway? of the so-called system. Or seeing the display of tacit and overt assumptions, the insertion of third-party (institutional, and staff) values and of the rampant general ignorance of the law, and how ill-prepared, inconsistent and over-worked, distracted and disorganized everyone is at the ultimate moment.

    The notification, registry, last wishes, or consent isn’t even half the battle.

    Questions arise along with many, many other factors that you’ll never read about on all those nice sponsoring websites. They have good reasons for not wanting to even begin to discuss mistakes, and culpability. So you see, if one thinks one will leave it to the “system”, no matter how well intentioned, there will be disapointment.

    The “system” needs scrutiny.

    So scrutiny and philosophizing now will maybe enable the system to be adjusted. This will then perhaps serve to effect attitudes and quality of care when needing the system to work.

    Unfortunately, there are not that many ways for the average person to influence change in this sphere.

    I for one haven’t been part of any meaningful discussion after-the-fact. Nobody (doctors, hospital administrators) were interested, or prepared to discuss lessons learned at the times I was a party.

    It’s nice that you believe the story that the system works. Many however don’t believe the easy answers, the slick messages and official testimonials.

    I and others still believe the system is broke. It certainly is closed, inefficient, resistant to change…and more often than not, shielded from bright lights of public scrutiny and open discussion.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s