Presumed consent for organ donation
BMJ 2008; 336 doi: https://doi.org/10.1136/bmj.39475.498090.80 (Published 31 January 2008) Cite this as: BMJ 2008;336:230
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It seems to me that this debate has managed to miss the critical
issues around donation and in doing so has failed to spot an alternative
to presumed consent that could achieve high rates of donation.
The key problem presumed consent is supposed to tackle is the large
gap between those who say they are happy do donate when asked (80-90%) and
those who actually sign up to the register (20-30%).
This gap exists for two key reasons: people are not often asked to
make this choice; and the default option when asked is not to donate. The
default option--whatever the choice--is the one most people pick (even if
it is more costly or has a lower reward than the alternative--I discussed
some evidence for this in a reply on a previous thread:
http://bmj.com/cgi/eletters/336/7636/111-a#188146, 24 Jan 2008)
This suggests a solution that avoids any presumption: pose the
donation question more regularly (eg electoral registration forms filled
in by adults once a year) and make the default option to join the donor
register. By exploiting what we know of the psychology of human decision
making, we can avoid presuming anything, make it easy for objectors to
stay off the register and (probably) get a registration rate three times
the current level.
Competing interests:
PA Consulting has commisioned opinion polling on attitudes to donation. The author's views are, however, his own.
Competing interests: No competing interests
Boehm advocates a proactive approach by asking people whether they
want to be an organ donor when they join a general practice[1]. In fact,
this question has been included on the form for registration with a
general practitioner for many years. According to the UK Transplant
website[2], people are also given the opportunity to opt in to organ
donation when completing an application for a passport, driving licence,
European Health Insurance Card or Boots Advantage card. The system that
Boehm proposes is thus precisely the one that is in current use and that
she says is not good enough. Simple it may be, but this approach has been
tried and found wanting.
1 Boehm S. A bad choice. BMJ 2008; 336: 345
2
http://www.uktransplant.org.uk/ukt/how_to_become_a_donor/registration/ro...
Competing interests:
None declared
Competing interests: No competing interests
The BMA' ethics committee's ethics are those of the ends they want
justifing any means, however unprincipled. They don't like the threat to
patients' trust in doctors inherent in presumed consent to accepting
electronic healthcare records. So they oppose this. They are right.
Capital punishment may reduce the incidence of murder. Public support
for its re-introduction may well exceed 64%. That doesn't make it right.
Torture of prisoners may extract information that saves innocent
lives. That doesn't make it right.
Presuming consent though you don't have it, may increase the
availability of organs. That doesn't make it right.
Organ donation is the ultimate altruistic gift. Converting everyone
into conscripts, save for conscientious objectors, would be disgraceful
and counter-productive in terms of public confidence in the medical
profession, given our history of doctors taking whatever they fancied
without attemting to obtain consent. The government unequivocally opposed
such a change only 3 years ago passing the Human Tissue and Mental
Capacity Acts to maximise individuals' opportunities to make positive
informed choices about how their bodies are treated. Explicit consent is a
core principle of all medical regulators' 'good medical practice'. Long
may it remain so.
Competing interests:
None declared
Competing interests: No competing interests
Presumed Consent for End-of-life Organ Donation: A Legislation
Undermining Values in a Multicultural Society.
To the Editor
Governmental, private professional organizations and advocacy groups
continue to mischaracterize organ donation as donation after death to make
it more palatable to the general public. The two types of organ donation:
heart-beating (with a confirmed diagnosis of brain death) and non-heart-
beating (cardiorespiratory arrest without a prior diagnosis of brain
death) are included within the legislation of presumed consent to donate
organs. Both types of organ donors (brain dead or not) are resuscitated
and maintained on artificial life support systems until the time when
organs are procured (1, 2). Death is certain after organs have been
removed from donors (3) and thus the accurate descriptor of this process
is end-of-life organ donation.
Hamm and Tizzard claim that presumed consent for organ donation is
the way to solve organ shortage and save 1000 lives annually who die of
end-stage organ disease awaiting transplantation (4). Is presumed consent
to organ donation the best approach to deal with problems of end-stage
organ disease in the United Kingdom (UK)? The healthcare problems related
to end-stage organ disease in society can be addressed by much more cost
effective and harmless alternatives. Primary and secondary preventative
healthcare services can dramatically decrease the development of end-stage
organ disease requiring transplantation (5). Does the legislation of
presumed consent to supply more organs for transplantation practice serve
the best interest of the UK population health? In 2006, the UK population
was estimated at 60 million with approximately 500, 000 deaths a year (6).
The legislation of presumed consent to donation will undoubtedly supply
organs greatly exceeding the demand required to save 1000 lives each year.
What is the fate of the surplus of organs removed?
Hamm and Tizzard cite a public opinion poll showing 64% of
respondents in favoring a soft system of presumed consent (4).
Nonetheless, they also wonder why 90% of the UK population favors organ
donation but only 24% has signed as organ donors. This discrepancy in the
results of opinion polls, however, can be explained by carefully phrasing
questions to obtain the desired response and findings. Therefore, how
people respond and behave in real life situations can be notoriously
misrepresented in opinion poll results.
So why is there so much interest to legislate presumed consent for
organ donation in the UK?
Traditional sociocultural concepts about human life are
systematically being altered to accommodate for maximizing deceased organ
donation and transplantation practice (7). Introducing presumed consent
for organ donation has much deeper societal consequences that are not
readily apparent to the general public. Through the process of
legitimizing presumed consent to donate organs at the end of life, this
legislation is silently dismantling the traditional boundaries of the
legal norms pertaining to death. The transplant community has
reinterpreted enacted laws in many countries to defend disputed end-of-
life practices in organ donation (8-10). Arbitrarily defining death (3),
wrongfully declaring brain death (11), and hastily determining
unsalvageability of patients are a few of the convenient end-of-life
vehicles to supply more human organs for transplantation. While certain
end-of-life practices in organ donation are inconsistent with existing
laws (10), they remain uncontested in many countries. It can be argued
that organ procurement practice is no different from other acts of
physician-assisted death or homicide except for its ability to circumvent
current prohibitive laws (12, 13).
Legislating presumed consent for organ donation implicitly denies
individuals the right of autonomy over their bodies and personal views
about end of life emanating from religious and cultural values and
beliefs. Consequently, this legislation also undermines the plurality of
religious and cultural differences about end-of-life practices in society.
Mandating procurement of organs through presumed consent breaches the
boundaries of forbidden areas of rituals about death and handling of the
deceased body in many religions and cultures. Several cultures and
religions object to practices that actively shorten the dying process
(14). Bodily mutilation and removing organs to save another life may not
be of a higher priority than offering dignity, peace and respect to
grieving families of the recently deceased (15).
Presumed consent for organ donation is also most likely to affect
certain vulnerable groups in society such as those with severe cognitive
and/or physical disabilities, the chronically institutionalized, the very
sick, the poor and the homeless who are without families or surrogates
that can stand up to defend them at the end of life. Society becomes a
participant in potentially sacrificing these vulnerable groups on the
premise of supplying organs to save others. Presumed consent to donate
organs infringes on the fundamental human right of individuals to
autonomously decide what happens with their bodies (16). Through
marginalizing traditional societal values, the subtext of presumed consent
to organ donation has much more dire consequences than advocates are
willing to disclose to the general public.
Joseph L. Verheijde, PhD, MBA, PT
Department of Physical Medicine and Rehabilitation
Mayo Clinic Hospital, Phoenix, Arizona, USA
Adjunct Professor of Bioethics,
Arizona State University, Tempe, Arizona, USA
Mohamed Y. Rady MD FRCS (Ed.) FRCS (Eng.) FRCP (UK) FCCM
Professor, Mayo Clinic Arizona,
Consultant, Department of Critical Care Medicine,
Mayo Clinic Hospital, Phoenix, Arizona, USA
Joan L. McGregor, Ph.D.
Lincoln Professor of Bioethics
Professor, Department of Philosophy,
Arizona State University, Tempe, Arizona, USA
Reference:
1. Snoeijs MGJ, van Heurn LWE, van Mook WNKA, Christiaans MH, van
Hooff JP. Controlled donation after cardiac death: a European perspective.
Transplant Rev 2007;21:219-229.
2. Adrie C, Haouache H, Saleh M, et al. An underrecognized source of
organ donors: patients with brain death after successfully resuscitated
cardiac arrest. Inten Care Med. 2008;34:132-137.
3. Joffe AR. The ethics of donation and transplantation: are
definitions of death being distorted for organ transplantation? . Philos
Ethics Humanit Med. . 2007; 2:18. Available at: http://www.peh-
med.com/content/2/1/28.
4. Hamm D, Tizzard J. Presumed consent for organ donation. BMJ.
2008;336:230.
5. Health Resources and Services Administration of the US Department
of Health & Human Services. Reduce the Risk for Needing a Transplant.
http://organdonor.gov/reduce_risk/index.htm. Accessed February 9, 2008.
6. Office for National Statistics. UK National Statistics online.
http://www.statistics.gov.uk/. Accessed February 7, 2008.
7. Matesanz R, Dominguez-Gil B. Strategies to optimize deceased organ
donation. Transplant Rev 2007;21:177-188.
8. Shemie SD. Clarifying the paradigm for the ethics of donation and
transplantation: Was 'dead' really so clear before organ donation?
Available at http://www.peh-med.com/content/2/1/18 Philos Ethics Humanit
Med. . 2007; 2:18.
9. Rady MY, Verheijde JL, McGregor JL, et al. Organ donation after
cardiac death: legal and ethical justifications for antemortem
interventions. eMJA. 2008;188:186-188.
10. McGregor JL, Verheijde JL, Rady MY. Do Donation After Cardiac
Death Protocols Violate Criminal Homicide Statutes? Medicine and Law.
2008;27:in Press.
11. Laureys S, Fins JJ. Are we equal in death?: Avoiding diagnostic
error in brain death. Neurology. 2008;70:e14-e-15.
12. Truog RD. Brain death - too flawed to endure, too ingrained to
abandon. J Law Med Ethics. 2007;35:273-281.
13. Verheijde JL, Rady MY, McGregor JL, Truog RD. “Brain Death – Too
Flawed to Endure, Too Ingrained to Abandon” Letter to The Editor and
Author Reply. J Law Med Ethics. 2007;35:515; author reply 515-516.
14. Sprung C, Maia P, Bulow H-H, et al. The importance of religious
affiliation and culture on end-of-life decisions in European intensive
care units. Intensive Care Med. 2007;33:1732-1739.
15. Sque M, Long T, Payne S, Allardyce D. Why relatives do not donate
organs for transplants: ‘sacrifice’ or ‘gift of life’? J Adv Nurs
2008;61:134-144.
16. Verheijde JL, Rady MY, McGregor JL. The United States Revised
Uniform Anatomical Gift Act (2006): New challenges to balancing patient
rights and physician responsibilities. At http://www.peh-
med.com/content/2/1/19. Philos Ethics Humanit Med 2007;2:19
Competing interests:
None declared
Competing interests: No competing interests
For a voluntary, private medical scheme, it might be appropriate to
say that if people do not pay their membership fees, they will not receive
treatment. It might be appropriate for such a private medical scheme to
have a rule that if you are not an organ donor after your death, you will
not receive an organ transplant during your life.
However, such a principle would be inappropriate for a compulsory
state system of health care provision such as the NHS. There should be no
connection between the rules that regulate enforced contributions for such
schemes and the rules that regulate the provision of health care. To say,
for instance, that only those people who donate bed-pans to the NHS will
be provided with bed-pans would be absurd. It is no less absurd to say
that only those who are prepared to donate their organs will receive
organs. Moral dessert might be an appropriate consideration for judicial
punishment but not for the provision of health care.
Competing interests:
None declared
Competing interests: No competing interests
The public presume the right to receive a donated organ. It seems
to me that
in this case they should also accept the responsibility of donation. It
is NOT
someone else's job!
A central register should be created, to which people enter their
consent or
opposition to donation. Once this is established, donations should be
restricted to those who have registered their consent.
This will enhance the supply and reduce the demand: no more waiting
lists.
Competing interests:
None declared
Competing interests: No competing interests
I agree with Hamm and Tizzard that a vigorous debate on presumed
consent for organ donation is overdue[1].
I do not doubt the potential benefits of presumed consent for organ
donation rates. The attraction of this utilitarian approach to the
perennial dilemma of a shortage of organ donors is obvious.
However, I have significant reservations about the ethics of presumed
consent for organ donation.
It is intriguing that members of the BMA ethics department should
support such an unequivocally paternalistic policy.
What of the autonomy of individuals and patients? Is it acceptable or
just to presume that the sick and the dying are content to surrender their
organs after death? I remain to be convinced that the great British
public, especially the young and the healthy, can be forced to make a
properly considered, informed decision about whether or not they want to
donate their organs. Death is not something most young/healthy people give
serious consideration too.
For example, a 2006 survey of over 2000 people found that 92% of 18
to 29 year-olds have not made a will[2]. It seems unlikely that these same
people will give adequate time and effort to considering organ donation,
since most people would probably consider making a will a higher priority.
I believe that government, "the State", exists to serve the people,
not the other way around. Harvesting organs from citizens who have died on
the basis of presumed consent is the most macabre manifestation of the
latter that one could imagine.
Given the shortage of organs in the UK, the preoccupation with the
preservation of patient autonomy may seem dogmatic and possibly eccentric,
but this inconvenient concept underpins the ethics behind modern medical
practice. The State brushes autonomy and free will aside at its peril. If
the Government goes ahead with presumed consent for organ donation, it
will irrevocably alter the relationship between the State and its
citizens.
It might be better to review the ability of relatives to overrule the
wishes of their deceased relatives. Hamm and Tizzard's editorial stated
that this occurs in about 40% of cases where the deceased have agreed to
be organ donors. This is the Achilles Heel of both the status quo and the
proposed policy of presumed consent. This seems to me to be the elephant
in the room that looms so large in our field of vision that we are blinded
to it.
References:
1. Hamm D, Tizzard J. Presumed consent for organ donation. BMJ
2008;336:230
2. BBC News website: Most Britons "do not have wills" 22 Oct 06
http://news.bbc.co.uk/1/hi/uk/6065966.stm (accessed 6 Feb 08)
Competing interests:
None declared
Competing interests: No competing interests
We are given a false choice - opt in/opt out.
The current system is not good enough but opt out is not the only or the
best answer. Currently the opt in system is run passively - it relies on
people waking up one morning and deciding to plan the details of their
death - most don't.
We need a proactive approach: lets ask people - perhaps when joining a GP
practice -'do you want to be an organ donor?'. If yes - it should be our
responsibility to add their details to the register. This interaction
could also be an opportunity to suggest this decision is discussed with
the next of kin.
This approach is simple and could be very effective - much more efficient
than an opt out system which to remain ethically sound would require
continuous and strenuous efforts to ensure the entire population is
informed.
Competing interests:
None declared
Competing interests: No competing interests
Presumed consent is a very troublesome notion. Consent must be
voluntarily and knowingly expressed in order to serve the function of
morally authorising actions of other people towards and concerning the
consenting person that otherwise would be morally wrong. (See Hugh
McLachlan, ‘”Consent” at the heart of transplant debate- but what does it
mean?’, The Scotsman, 6th February, 2008, See:
http://thescotsman.scotsman.com/opinion/39Consent39-at-heart-of-
transplant.3695556.jp
Suppose that a couple have been married happily for many years. If
one of them made sexual advances to the other and no reluctance to proceed
was expressed when, if there was reluctance, it could have been readily
indicated, it would be curious to say that a rape has taken place. Consent
might reasonably be presumed in this particular sort of case but only
because actions in the past were explicit manifestations of consent.
If someone explicitly stated when he was young that he gave his
consent to the use of his organs when he was dead, we might presume that
he continues to consent if he dies as an old man without withdrawing his
consent. However, if he does not ever indicate that he consents to such a
use of his organs, if would be outrageous to say that we can reasonably
presume that he did consent on the grounds that, when he had the chance to
register the opposite of his consent, he did not take it. After all, if
someone had sex with an unconscious woman and tried to justify his action
by saying that, when she was conscious, she did not indicate that she did
not want to have sex, we would not accept this as a reasonable argument.
The notion of presumed consent to the use of our organs after our deaths
is no more reasonable.
To say that it can reasonably be presumed that we consent to donate
our organs if we do not specifically say that we do not consent is absurd.
It is a deceitful piece of sophistry.
There might be a good utilitarian case for having an opt-out rather than
an opt-in system of organ donation. However, this would mean that there is
a case for using our organs even in the absence of our consent. If consent
matters in this area, then only the explicit consent of the people
concerned can justify the using of their organs after their deaths. If
consent does not matter and the use of their organs can be justified
without it, then consent does not matter. We should not appeal to the
bogus notion of presumed consent.
Professor Hugh V McLachlan
School of Law and Social Sciences
Glasgow Caledonian University
H.McLachlan@gcal.ac.uk
Competing interests:
None declared
Competing interests: No competing interests
Asking the question: Improving organ donation rates for eyes need not require a change in policy.
There has been considerable interest recently regarding consent for
organ donation as a way of increasing the number of cadaveric donors. The
government is exploring the possibility of an “opt out” system for donors:
that is unless you have specifically stated you do not wish to donate your
organs after death, they will be requested. The British Medical
Association (BMA) favour the “soft” presumed consent model, where the next
of kin are always consulted and can veto the deceased wishes (1). There
is considerable public support for this model but it will require a change
of law and has recently been rejected by the Welsh Assembly. Another
option is “mandated request”, making it compulsory for relatives of any
suitable candidate for kidney, liver, lung or heart donation to be
approached for consent within the intensive care setting and is used in
several European countries with success (2).
But what of the case for eye donation? Put simply we can improve
donor rates by either increasing the pool from which we can retrieve, or
recruit more efficiently from the available pool. I would argue that a
lot of the ethical, moral and financial wranglings discussed by the BMA
and Organ Donation Task Force do not apply to eye donation (1,3). We do
not have dilemmas over brainstem death, prolonging intensive care while a
decision is made, or acting against the best interests of the patient in
order to maintain organs in the best possible state. For most solid organ
donation, less than 1% population are likely to be suitable candidates,
but most of these exclusion criteria do not apply to eyes.
Before we becoming embroiled in exploring the ethics and expense of
an opt out scheme, let us take a step back. The Organ Donation Taskforce
(3) aims to create an environment where donation is the normal choice; to
make it usual, rather than unusual to be approached for organ donation
after death. A French study approached 600 families whose relative was a
potential eye donor within 24 hours of death, either in person or by
phone. They retrieved 433 eyes over the year long study. In contrast to
health professionals’ fears, families were in general pleased to find
something positive out of a tragedy, feel their relative could “live on”
and give something back to their community (4). Is it more unethical to
approach a grieving family offering them a chance to give, or to allow a
precious resource go wasted and countless patients go blind or put their
lives on hold while on a waiting list? Do we not have a duty to society to
utilise the skills and resources we already have, to lead the way in
improving donor rates by simply asking?
The BMA acknowledge that improving infrastructure and donor rates are
interdependent (1). UK centres with a dedicated eye retrieval specialist
have higher rates of donation than those without: if we are to be
successful in improving donation rates, this needs to be addressed.
Over nine thousand people die a week in England and Wales. We
already have a large enough pool of potential eye donors. We need not wait
for a change in law or policy. Eye donation has open to it a practical
and inexpensive solution: just ask.
1 Presumed Consent for Organ Donation. 2008. British Medical
Association
2 Wolfslast, G Comparative European legislation on organ procurement
Best Practice & Research Clinical Anaesthesiology 1999; 3 :117-119
3 Organs for Transplantation: report of the Organ Donation Task Force
2008. Department of Health
4 Geissler A, Paoli K, Maitrejean C, Durand-Gasselin J. Rates of
Potential and Actual Cornea Donation in a General Hospital:Impact of
Exhaustive Death Screening and Surrogate Phone Consent. Transplantation
Proceedings 2004:36; 2894–2895
Competing interests:
None declared
Competing interests: No competing interests