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Dear Chairman and Health and Social Security Scrutiny Panel
May I first register my dismay at what appears to be the government's preferred method of communicating with the public - via twitter using #asktheministerjsy and #organdonationjsy - as indicated on the JEP website.
E-government, Digital Jersey etc. are by no means what the propagandists make them out to be and, in some cases, digital technology entirely alienates certain sections of the community.
Twitter and "tweets" are for "twits", a role currently ably portrayed by the President of the United States and Twitter text capacity is far too limited to properly communicate the numerous reasons why - in my opinion - "OPT OUT" organ donation is wholly unacceptable.
Firstly, consider the language being used in current media releases, as follows:
Following responses gathered in the Jersey Opinions and Lifestyle Survey, the Health Minister has pressed ahead with a soft opt-out' scheme, which would still involve doctors talking to a potential donor's family before organs were harvested.
The use of the word "harvested" accurately highlights the utter indifference of the Health Minister, the Health Department and, it would appear, the government of the Island as to the sanctity of the human body, both in life and after death. This attitude, reflected by the agricultural analogy, is repugnant to any person of religious faith, as it should be to any other member of society.
Whilst I may personally consider that, post mortem, my inanimate corpse is all that remains of me and any subsequent surgical butchering will not damage my health or be painful, this is not a view shared by all other Islanders.
A view supported by a JEP survey on the subject which, I understand, recorded fewer than 20% of respondents in favour of switching to an "Opt Out Scheme".
Our spare part enthusiasts may claim that simply carrying a card in one's wallet will ensure that any declaration in life to be maintained as a corporate whole in death will be respected.
As States Members, you should know better than most that the Health Department is, from time to time, extremely unreliable and I am sure that I do not need to list some of the fatal surgical failures that have occurred over recent years as the clearest examples of that.
Initially, why should "spare part donor objectors" be obliged to carry a card 24/7/365 (in case of sudden demise) and what happens if the card is left at home? I understand that there will be a confirming check on a database before any carve up commences, but how reliable will that be?
I happen to have a French surname with a prefix nobiliary particle and regularly encounter indexing failures due to being listed under "Fs" and not "Ds" and vice versa. So if I am wrongly accessed on a database and deemed to have "opted in" that, presumably, is just an unfortunate administrative error and plain bad luck.
Let me assure you that the existing Health Department IT system is wholly unreliable and such errors are highly likely.
I am aware of a patient being prescribed drugs for early onset dementia and additionally powerful hormone therapy to treat multiple cancerous tumours. Neither the Cancer Clinic nor the Memory Clinic knew of the other drugs being prescribed and, in case it is not apparent, the patient suffering from dementia was unaware of the potential danger of the situation either.
Please don't think that the young person on "work experience" assigned to check the OPT OUT Register, is likely to do any better than current failures within holistic patient care.
The FACT is that the Health Department does not even know current patient care operational details and, therefore, CANNOT GUARANTEE that a desire to OPT OUT will be honoured and - on that basis ALONE - the proposal should be scrapped.
Apart from the Health Department not, in practise, "Knowing its Patient", the converse is the case with the client/ patient.
Let me clearly state that I do not wish to opt in or to be opted in and this is partly because I know my own body better than anyone else. I know what I have put into it over the decades, which bits work 100% and which don't. My body should probably be deemed a "Health Hazard" and tattooed accordingly, which is not a measure I am presently prepared to undertake. It should most definitely NOT go onto a "spare part menu" just because it is more convenient for our authorities to assume decision making for brain death victims functioning on life support - an area of intensive care that is, itself, fraught with diagnostic complexity.
Allowing a government authority to assume "ownership" of bodies in the "life support phase" of existence is a switch to an extremely "slippery slope".
When analysing basic principals, such as this one, I have often found it helpful to assess the more extreme scenarios or what some may describe as the "unintended consequences".
Look no further than than the 1978 film "Coma" (MGM/ United Artists), based on the novel by Robin Cook and directed by Michael Crichton. The pen sketch review notes - When a young female doctor notices an unnatural number of comas occurring in her hospital, she uncovers a horrible conspiracy.
In short, healthy patients undergoing minor surgery suffer induced brain death, so that their various organs can be "harvested" for sale to other medical institutions at huge profit.
40 years later, this horror fantasy is not so far fetched. There is a flourishing market in purchasing spare kidneys from the desperately poor in under-developed countries. On occasion, people are simply murdered to obtain vital internal organs that are not in duplicate within the body.
In an Island with an above average number of ageing multi-millionaires, what is the risk assessment for medical diagnosis of readiness for organ donation being swayed by a large financial donation? What is envisaged with talk of "Health Tourism"?
Putting the extremes to one side, any overview of this proposal should bear in mind the latest advances in medical science. The whole business of matching donor organs to patients in spare part surgery stems from the problem of organ rejection. This is now being overcome by the use of "stem cells", such that the patient's own body cells are used to "grow" the required body part on a framework in a laboratory, entirely eliminating rejection issues and hugely reducing the demand for donors.
There is no fundamental need to switch to the "Dark Side" of an Opt Out process, when stem cell derived organs are being developed.
In the face of known public distaste, I now gather that the Health Minister apparently intends to embark on a £20K Public Relations initiative to allay the fears surrounding his outmoded proposal - after, it would appear, the law/ regulation has already been passed by the States Assembly. Quite apart from the affront to public consultation and the democratic process, that money would be far better spent on a marketing campaign to encourage more of the local community to "Opt In" to the current organ donor process. I would encourage the H&SS Scrutiny Panel to ensure such an outcome.
Guy de Faye March 2018