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Gifts of life in short supply
Justin Roake
In common with most westernised countries, New Zealand has
developed organ transplant services to a high degree and achieves excellent
outcomes. However, it has had less success in meeting the challenge of organ
donation and this is now the critical factor limiting transplantation. In this
respect, New Zealand and Australian states (with the exception of South
Australia) stand out as low achievers in stark contrast to the USA and most
European countries, where cadaveric organ donation rates are substantially
higher than our own. Spain in particular has more than doubled its donor rate
over the last decade, and now consistently reports cadaveric donor rates above
30 per million population per year.
In New Zealand over the last decade, there have been between
34 and 46 (10 – 12 per million population) cadaveric organ donors per
year.* In 2000, 41 cadaveric donors contributed 75 transplantable kidneys, 34
livers (7 used in Australia), 13 hearts, 16 lungs (4 used in Australia), 3
pancreases and other tissues. These donors were exclusively people who were on
ventilator support in an intensive care unit and had suffered brain death,
usually from trauma or intracranial haemorrhage. Consent to proceed to organ
donation had been obtained from the families of the donors, and the enormous
contribution that these families have made requires recognition.
Organs for transplantation may also be obtained from living
donors in the case of kidneys and (occasionally) livers. In New Zealand,
approximately one third of kidneys transplanted come from living donors (31 of
106 in 2000). The donors are most commonly blood relatives (usually parents or
siblings) or emotional relatives (spouses or friends), but occasionally there is
no relationship between the donor and recipient. The ethics of
“altruistic” donation have been debated, but there does not appear
to be any substantial argument against this type of practice and, in the view of
many health professionals, it should receive greater acceptance. Overall, living
donors make a substantial contribution to our transplant programmes at
considerable personal cost for which they receive little recognition and no
compensation.
The demand for organs for transplantation exceeds supply and
the shortage is most marked (in terms of numbers) for kidney transplantation.
The number of kidney transplants performed in New Zealand each year has remained
relatively static, at between 96 and 112, in the years from 1996 to 2000. This
is in the face of an increase in the number of patients awaiting kidney
transplantation; that number now stands at well over 300. Furthermore, the
number of new patients who require treatment for end-stage renal failure each
year is increasing and reached 411 in 2000. Most patients now wait in the region
of two or three years before receiving a transplant, unless they are fortunate
enough to have a living donor. Waiting is associated with relatively poor health
and consumes large quantities of health resources, principally because dialysis
is very expensive. Transplantation, on the other hand, substantially improves
quality of life, improves survival, and is cheaper.
There are many reasons for the low cadaveric organ donation
rate in New Zealand, but experience from Spain, the USA and South Australia
suggests that it should be possible to improve our performance by addressing
three key factors.
First, we must ensure that intensive care unit staff
recognise all potential donors. Many more people die each year in intensive care
units from brain injury than become organ donors. When this subject has been
studied, it has been clear that some people who suffered brain death were not
considered as potential organ donors. Sometimes this is through oversight,
sometimes through misunderstanding of what is required to be an organ donor, but
probably more frequently because of early withdrawal of treatment before formal
brain death testing.
Second, it is imperative that consent for organ donation is
sought in an appropriate way in all cases. Organ donation is usually considered
under difficult circumstances. The trauma suffered by grieving families and the
intensive care unit staff can lead to some reluctance to approach families about
organ donation. Often it is felt that to do so may increase the burden placed on
the family, but evidence suggests the opposite and that by not being asked
families are denied the opportunity of some good resulting from tragedy. It is
known that consent rates are influenced both by the timing and method of
approach and that staff need specific training on how these difficult
circumstances are best handled.
Third, other issues that lead to low rates of consent for
organ donation need to be addressed. Enhanced public education on the need for
organ donation and the benefits that result is much needed. The recording of
donor status on driving licences, often an important “point of
contact”, will never achieve significant results in isolation and may have
inhibited other initiatives. New Zealand’s focus on donor registration may
be one reason resources have not been put into more effective means of promoting
organ donation and raising national consciousness of the issues. In New Zealand,
for legal, ethical, cultural and pragmatic reasons, the family of potential
donors will always be consulted for permission to proceed to removal of organs.
It is therefore vital that family members are aware of each other’s wishes
through open discussion. Other factors that may reduce consent rates are lack of
public understanding about brain death and its implications, and lack of trust
in doctors and other health professionals.
Particular attention must be given to Maori and Pacific
peoples, who have substantially higher rates of renal failure than do other New
Zealanders. This is principally because of a far greater prevalence of diabetes
and diabetic nephropathy and is reflected in the patients on dialysis. In 2000,
fully one third (34%) were Maori and another one fifth (19%) were Pacific
peoples, far in excess of the expected proportions based on the New Zealand
population (15% Maori, 4% Pacific peoples). However, only 34% of Maori and
Pacific people with renal failure were waiting for a transplant in contrast to
59% of other New Zealanders, and disproportionately fewer actually received a
transplant. In 2000, Caucasoids received 76% of renal transplants, but only 12%
went to Maori, 4% to Pacific people and 8% to others, mostly Asians. The
national organ allocation system introduced in 1999 is fairer than its
predecessor, but its focus on tissue matching probably largely explains this
discrepancy. The chance of a good tissue match for Maori or Pacific people is
low because very few of them become cadaveric donors. In fact, in the 5 years
from 1996 to 2000, 94% of 204 donors were Caucasoid and only 3.5% Maori, 1%
Pacific people, and 1.5% other ethnic groups. Opinions on why this is so vary.
Some Maori have cultural objections to organ donation, but these may be less
widespread than is often supposed. Nevertheless, consent rates among Maori and
Pacific people are particularly low and may reflect unfamiliarity with the
concept of brain death and its acceptance, mistrust of medical staff, and issues
such as the retention of organs and tissues at autopsies. There is also a
general lack of public knowledge of the particular transplant needs of Maori and
Pacific people.
If New Zealand is to increase its donor rate, specific
action is needed. Excellent work is already undertaken by our organ donation
coordinators but they are grossly under resourced. Existing efforts are simply
not enough and have failed demonstrably. The hallmarks of successful donor
programmes elsewhere in the world include: proactive donor detection in
intensive care units staffed by specifically-trained and motivated nurses and
doctors; systematic audits of all deaths occurring in intensive care; and
fostering of a positive or supportive social atmosphere with a coordinated
national public focus on transplantation.
What should be done in New Zealand? Immediate action to
ensure that all potential donors in intensive care are recognised and
considered; formal brain death protocols in all ventilated patients with severe
brain damage and fixed dilated pupils; and discussion of all such cases with the
national donor coordinators. Development of a National Donor Organisation with a
formally-appointed medical director and appropriate budget is urgently needed.
This would permit greater support for existing education initiatives for
intensive care unit nurses and medical staff (including the Link Nurse
Programme, Medical ADAPT (Australasian Donor Awareness Programme) and Nursing
ADAPT), and would be a vehicle for quality initiatives such as audits of
intensive care deaths. It would make medical advice readily available to donor
coordinators and be a force for national public education and the promotion of
organ donation issues within the Ministries of Health and Education. Specific
education initiatives that might be considered would include introduction of
organ donation issues into school curricula, and specific partnerships with
Maori and Pacific people to assist in addressing their needs.
* Figures quoted are taken from Statistics New Zealand
and the 2001 annual reports of the Australia and New Zealand Dialysis and
Transplant Registry (ANZDATA) and the Australia and New Zealand Organ Donation
Registry (ANZOD).
Author information:
Justin Roake, Professor and Head of Department of Surgery, Christchurch
Hospital
Correspondence:
Professor Justin Roake, Department of Surgery, Christchurch Hospital, P O
Box 4345, Christchurch. Fax: (03) 364 0352; email: JustinR@cdhb.govt.nz
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