Memorandum by Patient Concern
SUMMARY
1. Patient Concern is concerned about the
shortage of donor organs and wishes to see more active methods
taken to recruit potential donors. However, we are equally concerned
about push towards the coercion of an opt-out policy and any suggestion
that organ donation, which should be a generous gift, should be
regarded as an obligation.
2. We campaign against the introduction
of a presumed consent system but support all efforts to spread
awareness and increase the donor pool.
PRESUMED CONSENT
3. Presumed consent is no consent at all.
It relies on inertia and ignorance to achieve a desired goal.
In the UK we have fought hard, over the last 15 years, to achieve
a situation where informed consent is recognised as an essential
foundation of health care. The force of organ donation propaganda
must not be allowed to undermine this important principle.
4. When comparing the systems adopted in
various countries it is necessary to take account of the value
placed on personal autonomy from country to country. UK Transplant
has taken the view that an opt-out system could damage patient
confidence in the transplant system.
5. An opt-out system, dispensing with the
need for explicit consent, runs counter to the Department of Health's
"Good practice in consent" and the principles
underlying the Mental Capacity Act 2005, which aims to maximise
each individual's capacity to make their own informed decisions.
The BMA's enthusiasm for an opt-out system shows an unfortunate
tendency for the medical establishment to abandon explicit consent
when they fear that not enough people are willing to do what they
believe is the "right thing".
6. The Alder Hey scandal has left a deep
rooted suspicion of organ removal in the UK, resulting in the
Human Tissue Act 2004, which aimed to restore trust and confidence
in the medical profession. The issue of presumed consent was fully
debated in Parliament at the time and was rejected.
7. Expediency, the need to combat the shortage
of donor organs, is not a sufficient reason to overturn all the
ethical issues accepted by Parliament at the time. It may sound
like an easy option but could be counter-productive.
8. The transplant service in the UK is renowned
for its openness and transparency, due in part to the fact that
consent has always been an integral part.
9. Supporters of an opt-out system point
to the discrepancy between the number of people who declare themselves
willing to donate organs in opinion polls and the number who sign
up to the donor register. But giving a "feel good" answer
in the street is very different from facing the reality of the
process, so it cannot be assumed that a "yes" in these
circumstances represents a considered decision.
10. The soft option: If the so-called
"soft option" on presumed consent, where organs will
not be removed if relatives voice objections, is followed, relatives
are likely to come under psychological pressure, at a time when
they are most vulnerable, simply because the patient did not get
around to opting out.
11. The hard option: The hard option,
where relatives objections are not taken into account, may have
meant, in Austria, that almost everyone who needs a kidney transplant
can obtain one, but it has no place outside a totalitarian state.
Our bodies are not the property of the state, either in life or
death.
TAKING INTO
ACCOUNT THE
VIEWS OF
RELATIVES
12. Claims that an opt-out system is advantageous
to relatives because it "relieves them of the burden of making
a decision" is insulting. Some 20% of bereaved relatives
report that they were never asked about the possibility of organ
donation, which suggests that many doctors find the task too onerous.
Four out of 10 bereaved relatives who are asked about donation
in the UK refuse.
13. The success of the organ donor programme
in Spain, the only country where there has been a year on year
rise in organ donors over the past 10 years, is often held up
as an example of the opt-out system. However the law on opt-outs
was changed in 1979 and only showed a marked impact when transplant
coordinators were introduced into every intensive care unit (ICU)
in 1989. These coordinators monitor possible donors in the ICU—a
questionable practice which might lead to patients perceiving
that they will be more valuable as a set of spare parts than as
a seriously sick individual. But they are also highly trained
in approaching and explaining to relatives. Surveys indicate that
a high number of relatives change their mind from an initial "no"
once the process has been properly explained.
14. The Human Tissue Act laid down that
if anyone has indicated their wish to donate an organ after death,
the donor's wishes take priority over the views of relatives who
may object. Patient Concern supported this change as it fully
accords with the principles of patient choice. However, doctors
are unwilling to wave the law in the face of grieving relatives,
so this change has had little effect. Perhaps part of the problem
here is that sufficient emphasis has never been laid on the need
for willing donors to discuss the issues with their family.
OBSTACLES TO
DONATION
15. UK surveys always show a sizeable majority
willing to donate organs, though only one in four registers their
willingness. This indicates that giving the "feel good"
or politically correct answer in the street is very different
from facing the reality of the process. The 2006 European Commission
12 survey showed that though 60% of students favoured the idea
of donation, this dropped to less than half in those aged 55 and
older—in other words, those more likely to see this as a
reality in their lives.
16. The focus on the positive aspects of
organ donation has failed to recognise and deal with the fears
that may prevent many people from signing up.
Some of the arguments are as follows:
— Brain stem death, when someone's
heart and lungs are still working, is not death in the ordinarily
understood sense—nor is it death in any universally accepted
neurological sense. It is part of the dying process and at such
a time, the medical duty of care should be concentrated on the
"dying" patient and not with any third party.
— In the UK, organ removal may
be performed when the body is paralysed but not anaesthetised.
This may be so that the organs can be harvested in the best possible
condition but whatever the reason, it leads to the impression
that the recipient is more important than the donor, as no one
can ultimately prove that no feeling is possible. The Royal College
of Anaesthetists and many in the patient movement believe that
full anaesthetic should be mandatory, to obviate any risk of suffering.
— Some doctors and patients believe
that the tests used to ascertain brain death—notably the
crucial apnoea test—may induce rather than diagnose brain
death and thus some patients may be deprived of recuperative treatment
too hastily.
— The concept of brain death and
brain stem deaths are not universally accepted. In countries where
they are accepted, methods of making the diagnosis and the number
of doctors required to certify this condition vary. Given that,
once organs have been harvested, there is no way back, this is
a matter for grave concern.
— The emphasis placed on cost
savings and benefits in the EU document (EN50) may only serve
to confirm suspicions that a seriously sick person has far less
value than a potential organ donor.
INCREASING THE
DONOR POOL
17. In Patient Concern's view, the government
and medical community could make far more vigorous efforts to
encourage organ donation within the UK:
— Ensure that there is a simple
and direct system within doctors' surgeries, hospitals, pharmacies,
blood donation centres etc for signing up the to donor register—not
simply handing out donor cards.
— "Payments by results"
for putting certain categories of patients on drugs etc has proved
very successful within the NHS. Perhaps it would be productive
to pay for numbers of patients signed up to the donor register.
— Fund special training is needed
for those who approach bereaved relatives about the possibility
of organ donation—but consider that having these same people
identifying potential donors may be counter-productive.
— Offer relatives the option of
seeing the brain stem death tests performed, preferably with the
support of the specially trained individuals.
— All organ should be harvested
under full anaesthetic.
— When the regular campaigns to
persuade people to carry donor cards and sign up to the register
are launched, emphasise that it is essential to discuss your choice
with relatives.
ORAL EVIDENCE
Patient Concern would be pleased to elaborate
on these issues orally if required. Patient Concern has given
oral evidence to the Shipman Inquiry over two days, the Joint
Scrutiny Committee of the House of Lords and Commons on the Mental
Capacity Act and the Health Select Committee of the House of Commons
on electronic patient care records.
18 September 2007
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