Introduction of an opt out presumed consent system in the context of Organ Transplantation Public De

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Introduction of an opt out (presumed consent)
system in the context of Organ TransplantationPu
blic Debate2008
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Welcome

• Peter Carr
• Meeting Facilitator
• Welsh Assembly Government

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Why we are here today

• Today we would like to
• Understand your views on organ donation
• Tell you a bit more about some of the actions
  already identified to increase organ donation
• Get your ideas for other ways of increasing organ
  donation within the current opt in system
• Explore your views of alternative systems used in
  some other countries i.e. opt out systems

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A Public Debate

• Public meetings around Wales
• Website and discussion document
• Online poll
• Writing in or emailing views
• Telephone interviews
• Seeking the views of public and voluntary sector
  organisations

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The Public Meetings

• Cardiff Monday 27 October
• Brecon Tuesday 28 October
• Haverfordwest Wednesday 29 October,
• Caernarfon Friday 31 October
• Aberystwyth Monday 3 November
• Wrexham Tuesday 4 November
• Newtown Thursday 6 November
• Anglesey Thursday 13 November

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What will happen after the public debate?

• All views collected together and reported to the
  Minister for Health and Social Services
• All views gathered from the public meetings will
  be anonymous no individuals will be named
• The Minister will use the feedback to help inform
  the decision on whether Wales should seek a
  legislative change in order to introduce a system
  of presumed consent

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How todays meeting will work

• Group discussions with everyone following same
  agenda
• Information and facts provided to help your
  discussions
• No right or wrong answers and no expert knowledge
  needed
• Make time for everyone to contribute
• Take a break when you need one
• Mobiles off please

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• Name of Clinician
• Title

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What is organ donation?

• Organ donation is the gift of an organ to help
  someone who needs a transplant. Specific tissues
  of the human body are removed from a person who
  has recently died, or from a living donor, for
  the purpose of transplanting or grafting them
  into other people to save or dramatically improve
  their lives.

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What is organ Donation?

• Today we will be concentrating on donation after
  death and organ donations for transplant, not
  organ donations for medical research.

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In 2007/8 over 3,200 people in the UK received an
organ transplant
Kidney (most common transplant) Liver, heart and
lungs Also tissue transplants (skin and bone)
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Organ transplants can work well

• After 1 year, 85 of transplanted organs still
  work well
• Even after 5 years, 70 of transplanted organs
  still work well
• These figures keep improving because of better
  drugs and methods

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The process within the current law the opt-in
system

• (1) Did the person agree to be an organ donor?
• Were they on the NHS Organ Donation Register?
• Did they carry a donor card or write down their
  wishes elsewhere?
• (2) If the person had registered as a donor
• Before removing organs, it is good practice to
  talk with relatives where possible
• Did they know about the persons wishes? Will
  they support those wishes?
• Are there any known reasons (such as a disease)
• against organ donation?

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• (3) If the person had not registered as a donor
• The relatives will be approached to discuss how
  they feel about donation
• Relatives are more likely to say yes if the
  person had talked about their wishes while still
  alive
• Many relatives do not know the persons wishes
• If this is the case 40 of relatives among all UK
  adults will say no
• However, if they were on the organ register, only
  10 will say no

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Two types of donors after death
(1) Non-heart beating donors (cardiac
death) People who have died and whose hearts have
stopped beating.
(2) Heart beating donors (brainstem death) People
who have died while on a ventilator which
continues to keep their hearts beating. These
are the most common types of donors.
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What are your views on Organ Donation?

• Discussion
• 5 minutes to discuss in groups
• Write down your views on the yellow sheets
• Some group feedback and discussion

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People have to wait for transplants

• Currently there are around 500 people waiting for
  an organ transplant in Wales
• There are not enough donated organs available to
  do all these operations and the situation is
  getting worse

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The list is getting longer
Source UK Transplant
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What limits the supply of organ donations?

• Because transplantation has to happen very soon
  after death, organs can only be donated by people
  who die in hospital
• In addition to this, only 25 of UK adults have
  signed up to the NHS Organ Donation Register
  (although surveys show that between 60 and 70 of
  people would be happy to be donors)
• And many people do not know their relatives
  wishes

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The Organ Donation Taskforce

• The Organ Donation Taskforce was set up in 2006
  to look at the different ways we could improve
  this situation by
• Identifying barriers to organ donation
• 14 recommendations to increase levels of donation
  in the current system (these have already been
  accepted by the Welsh Assembly Government and are
  being actioned)

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Raising awareness

• Welsh Assembly Government funded a publicity
  campaign in 2008
• Tell a Loved One campaign
• Run by Welsh charities
• Celebrity fronted TV and media adverts
• Public events
• Key message to discuss organ donation with your
  loved one and to register as an organ donor

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Ideas for improving organ donation rates within
the current legal system?

• Discussion
• 5 minutes to discuss in groups
• Write down your views on the green sheets
• Some group feedback and discussion

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• We have already discussed ways to improve
  donation rates within the current opt in system
  in the UK
• Now we would like to introduce you to other
  systems used in other parts of the world and to
  hear your views on these

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Opt in vs. Opt out

• In an opt in system, such as the current system
  in the UK, people can choose to donate their
  organs by stating their desire to do so whilst
  they are alive - such as by joining the National
  Organ Donation Register or carrying a donor card
• In an opt out system (or presumed consent) organ
  removal can legally occur after death unless a
  person has stated that they are against this
  whilst they are alive. Their relatives can also
  do this for them in soft opt out systems

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The Choice to Opt In or Opt Out

• People can register their choice to opt in or opt
  out
• People must register their choice to opt in or
  opt out also called mandated choice

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Questions about these various systems for organ
donation?

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What are your initial views on these various
systems for organ donation?

• Discussion
• 10 minutes to discuss in groups
• Write down your initial views on the pink sheets
• Some group feedback and discussion

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Practicalities and Communication

• What safeguards would need to be put in place
  with your chosen system?
• What practical issues would need to be taken into
  account with your chosen system?
• How to notify authorities that you wish to opt in
  or out?
• How to keep record of who has opted in or out?
• How a database may be used to support this?
• What kinds of communications/publicity
• would be required?

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Exclusions?

• What exclusions might your chosen system require?
• For instance
• Certain organs
• Children and those incapable of giving consent
• Religious groups

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What is your preferred system?
Please use Handout 4 to indicate your preferred
system by ticking the boxes next to the option in
the list and then hand these in before you leave
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Thank you for contributing to this important
debate
Please complete the evaluation form provided.
You can also send us your views following this
meeting by email organdonation_at_wales.gs
i.gov.uk Or you can write Presumed
Consent FREEPOST NAT8910 CARDIFF CF10 3BR