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Organ Donation

A lecture for Year 2 medical students at UCL Medical School, as part of the Ethics and Law programme.
by

Laura-Jane Smith

on 23 July 2013

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Transcript of Organ Donation

Year 2 Ethics and Law
UCL Medical School

Organ Donation
Organ transplantation in the UK
The front line
A brief history of transplantation
These developments are all very recent. It is a challenge to ensure our ethics and law keep up with scientific advances
Let's hear from a Transplant surgeon and Specialist Nurse in Organ Donation
Dr Laura-Jane Smith
Clinical Teaching Fellow
1905
2007
1954
1908
First reported cornea transplant
Blood transfusion established
First successful kidney transplant
1968
First UK heart transplant
1981
Donor card launched in UK
2004
Human tissue Act 2004
First UK altruistic non-directed kidney transplant
Transplantation: the law
The Human Tissue Act 1961
The Anatomy Act 1984
The Human Organ Transplants Act 1989
The Human Tissue Act 2004
Regulates the storage and use of human organs and tissue from the living, and the removal, storage and use of tissue and organs from the deceased, for specified health-related purposes and public display.
Created the Human Tissue Authority
Makes it lawful to take minimum steps to preserve the organs of a deceased person for use in transplantation while steps are taken to determine the wishes of the deceased
Extends to England, Wales and Northern Ireland
New offence of DNA "theft" applies throughout UK
Consent
Fundamental principle underpinning lawful retention of body parts, organs and tissues, from living or deceased, for specified health purposes or public display
Human tissue excludes:
cell lines
hair and nail from living people
live gametes and embryos (HFEA 1990)
Consent required
hospital post-mortem
most research
public display
obtaining genetic info
transplantation
Penalties of up to three years imprisonment or a fine, or both, are provided in the Act as a deterrent to failing to obtain or to misusing consent.
Exceptions to consent
Some research on anonymised cell samples
Apply to Human Tissue Authority (ie not possible to trace donor and tissue used for obtaining medical/genetic information)
Adults lacking capacity - act in best interests
Extreme public health emergency (Secretary of State power)
Who can consent?
Opt-in or Opt-out?
Austria: hard opt-out
99.98% consent rate
Germany: opt-in
12% consent rate
Strategies for increasing organ donation
Education/nudge
Increasing living donors
Using 'high-risk' donors
Opt-out system
Mandated choice
Financial incentives
Social incentive programs
Alternative sources
What are the arguments for and against opt-out?
Organ distribution
How should we allocate organs?
Concept of distributive justice
1. To each person an equal share
2. To each person according to need
3. To each person according to effort
4. To each person according to contribution
5. To each person according to merit
6. To each person according to free-market exchanges
Equal access distribution
Maximum benefit
free of biases based on race, sex, income level, geographic distance from organ
free of medical or social ‘worthiness’ (smokers, prisoners)
medical need
probable success
Agree or disagree?
1. Someone who has received 1 organ transplant should not be able to have another one
2. Someone whose lifestyle (smoking, drinking, alcohol, obesity) has caused their organ failure should not get a transplant
3. If someone is on the donor register their organs should be taken for transplantation even if their family object
4. A person who has young children should be given a transplant before a single person
5. Someone in financial difficulties should be able to sell an organ such as a kidney
6. Prisoners should not be given organ transplants
Dr Laura-Jane Smith
Clinical Teaching Fellow
@_elljay_
http://www.scoop.it/t/ethics-and-law-of-organ-donation

Beliefs vs actions
UK Law
How can we distribute them fairly?
How can we increase the pool ethically?
Organs are scarce
An example
Jo, who is 19, is on her moped when she is hit by a car.
She carries a donor card and is on the organ donation register
She suffers major injuries and is taken to intensive care
She never regains consciousness and tests of brainstem function are conducted, twice by 2 Consultants
"Storage and use of organs and tissues after people died without proper consent was commonplace"
1. Learning from Bristol: The Report into Children's Heart Surgery at Bristol Royal Infirmary (July 2001)
2. The Royal Liverpool Children's Hospital Inquiry Report (January 2001) HC12-II
3. Dept of Health (May 2003) The Investigation of Events that followed the death of Cyril Mark Isaacs; Dept of Health (July 2003) Isaacs Report Response
What might people ask you as a doctor?
"I'm not sure if my religion allows transplantation."
No major UK religions are opposed to organ or tissue transplantation.
Exceptions:
Some of the Roma gypsy community and some Jehovah's Witnesses
"Can I be sure doctors will fight as hard to save me if I'm on the register?"
Yes. We have a duty of care to try to save life first.
If, despite our efforts, the patient dies, organ and tissue donation can then be considered.
A completely different team of donation and transplant specialists would be called in.
Questions from donors
"Will my relatives' body be disfigured? Can I see them afterwards?"
Organs and tissue are always removed with the greatest of care and respect. This takes place in a normal operating theatre by specialist surgeons Afterwards the surgical incision is carefully closed and covered by a dressing in the normal way.

You can spend time with your family member after the organ removal.
"How do you know he's really dead? He's still breathing."
Death is confirmed by doctors who are entirely independent of the transplant team. Death is confirmed in exactly the same way for people who donate organs as for those who do not.

For those on ventilators brain stem tests are done. There are very clear and strict standards and procedures for doing these tests and they are always performed by two experienced doctors.
Questions from relatives
"What will happen if my relatives object?"
They will be encouraged to accept your wishes and it will be made clear that they do not have the legal right to veto or overrule those wishes.

There may, nevertheless, be cases where it would be inappropriate for donation to go ahead.
Questions from recipients
"Can I pay someone to donate an organ to me?"

1. spouse or partner (including civil or same sex partner)
2. parent or child
3. brother or sister and other relatives
4. friend of long standing.
Who counts as a 'qualifying relative'?
The Human Tissue Act 2004
Her treating team break the news to her family and contact the transplant co-ordinating team
A specialist nurse in organ donation (SNOD) meets Jo's family and discusses organ donation.
Jo is kept on the ventilator so that she can be a heart-beating donor. Matching and screening tests are done
Her organs are removed in an operation and she is taken off all the machines. Her family then spend time saying goodbye
Malia is 22 and has SLE (lupus) which has caused renal failure. She has been on the transplant list for 8 months and has haemodialysis three times a week. She is studying human rights and plans to be an international aid worker
She has a rare blood group type.
Organ trade
Illegal trade - India, China, Africa
Legal trade - Iran (since 1998)
UK Law: it is absolutely illegal to trade in organs or tissue
For and against opt-out
For
Social incentive programmes
ie preference given to those on the donor register, and to relatives of donors
Education/nudge
eg on drivers licence, Boots card, facebook
UK: these strategies are in use
UK: has an opt-in system. There are proposals that were put before parliament Dec 2012 to move to an opt-out system in Wales.

The BMA's Medical Ethics Committee produced a report Feb 2012 recommending that the UK move to an opt-out system with safeguards.
No. It's absolutely illegal to trade organs in the UK
"Can we decide who gets my relatives' organs? I don't want a criminal to have them."
No. All organs donated in the UK by people who have died are donated freely, voluntarily and unconditionally. They are allocated on the basis of need and the best match
Living adult
Deceased adult
His /her consent
1. His/her consent before death
2. if no prior consent, consent of a nominated representative
3. If no representative, consent of a qualifying relative
What happened behind the scenes?
Following the brainstem tests, the national transplant service were contacted by Jo's doctors to alert them to the possibility of donation.
UK: there are no social incentives that affect organ procurement or allocation
"Can I contact the family of my donor to thank them?"
No. This is not permitted in the UK
Blood and cell samples were taken for tissue matching and sent to the national transplant service.
The results were fed into a computer which matched the blood and tissue to all patients awaiting transplants in the UK.
The computer followed a complex algorithm to generate a list of suitable patients who were well matched, of a similar age, had been on the waiting list for a while, and were in an acceptable geographical area
ABO blood group
HLA match
Against
It would increase the pool of donors
Vulnerable people would not opt-out
There were 28 altruistic non-directed transplants in 2010/11
What about altruism?
Legal after physical and pscychological assessment
Strong utilitarian arguments to save lives
Changes nature of 'gift' of organ donation
Reduces autonomy if don't opt out
Takes pressure off families
May induce backlash and reduce donations
Mixed evidence about whether would increase pool
Increases autonomy of donor
Same choice being made, just changes default position
Mum, I sold my kidney for an iPad
Actually fulfills many people's wishes
Cost
George is 64 and has end stage renal failure due to poorly controlled diabetes. He has haemodialysis twice a week and has been on the transplant list for a year. He has a BMI of 45.

He works from home as a computer programmer and looks after his 3 children as a single parent.
Who gets a kidney ?
I need a kidney
I need a kidney
'Bones' is 41 and has end stage renal failure due to a rare rapidly-progressive renal disease, focal segmental glomerulosclerosis. He is on haemodialysis four times a week.
He has a number of complications:
thrombosed AV fistula on L arm
two previous serious infections requiring iv antibiotics
malnutrition
He is serving life imprisonment for murder
I need a kidney
Local centres reviewed the list and discounted anyone known to be currently unwell.
UK Law
getting the best match
medical need
Full transcript