DRAFT – NOT GOVERNMENT POLICY
Donation rates and trends in New
Zealand and the potential scope to
increase deceased donation
Contents
Purpose ...................................................................................................................... 3
Executive Summary ................................................................................................... 3
Donation rates and trends ...................................................................................... 3
Scope to increase deceased donation rates ........................................................... 3
New Zealand donation rates – how have they changed over time? ........................... 5
Figure 1: Number of deceased donors over the last 20 years (1995-2014) ............ 5
Figure 2: The rate of deceased donors (per million of population) over the past 20
years (1995-2014) .................................................................................................. 6
Figure 3: Instances of donation after brain death (DBD) and donation after
circulatory death (DCD) .......................................................................................... 7
Table 1: Ethnicity of deceased donors .................................................................... 7
Figure 4: Number and rate per million of population of live donors over the last 20
years ....................................................................................................................... 8
Donations rates - how well do we compare to similar countries? ............................... 9
Figure 5: Worldwide actual deceased and live organ donors 2013 (pmp) .............. 9
Figure 6: Worldwide actual deceased organ donors 2014 (pmp) ......................... 11
Figure 7: Donation rates (pmp) for New Zealand compared to Australia and the
United Kingdom .................................................................................................... 12
How well do we utilise the donations we have? ....................................................... 13
Figure 9: Total number of organs transplanted from New Zealand deceased
donors................................................................................................................... 13
Figure 8: Number of organs transplanted from New Zealand deceased donors ... 13
How much demand and unmet need is there? ......................................................... 15
Kidneys ................................................................................................................. 15
Figure 10: Number of patients accepted for kidney transplants (full and active
waiting list numbers at the end of the month) - January 2005 to October 2015 15
Figure 11: Average waiting time before a transplant for a kidney – 2005 to 2014
.......................................................................................................................... 16
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Figure 12: Number of patients removed from the waiting list without receiving a
kidney transplant – 2005 to 2014 ...................................................................... 16
Hearts ................................................................................................................... 17
Figure 13: Number of patients on the waiting list for a heart at the end of the
month - January 2005 to October 2015 ............................................................. 17
Figure 14: Average waiting time before a transplant for a heart – 2005 to 201418
Figure 15: Number of patients removed from the waiting list without receiving a
heart transplant – 2009 to 2014 ........................................................................ 18
Lungs .................................................................................................................... 19
Figure 16: Number of patients on the waiting list for a lung at the end of the
month - January 2005 to October 2015 ............................................................. 19
Figure 17: Average waiting time before a transplant for a lung – 2005 to 2014 20
Figure 18: Number of patients removed from the waiting list without receiving a
lung transplant – 2009 to 2014 .......................................................................... 20
Livers .................................................................................................................... 21
Figure 19: Number of patients on the waiting list for a liver at the end of the
month - January 2005 to October 2015 ............................................................. 21
Figure 20: Average waiting time before a transplant for a liver – 2005 to 2014 21
Figure 21: Number of patients removed from the waiting list without receiving a
liver transplant – 2005 to 2014 .......................................................................... 22
What is the potential for increasing deceased organ donation? ............................... 23
Death audit data - Time trends ............................................................................. 23
Table 3: Death Audit Numbers .......................................................................... 24
Table 4: Percentage of patients who progress though the potential donation
steps ................................................................................................................. 25
Death audit data – Scope to increase deceased donation .................................... 26
Analysis 1: Potential scope to increase deceased donation based on what
Australia has achieved ...................................................................................... 26
Analysis 2: Potential scope to increase deceased donation based on an analysis
of missed donation opportunities....................................................................... 27
Table 5: Summary of estimates of the scope to increase deceased donation .. 28
Appendix A: .............................................................................................................. 30
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Purpose
This paper summarises the main data available on organ donation in order to present a clear
picture of the current situation in New Zealand, how donation rates have changed over time,
and the potential scope for improvement that this review could aim to achieve.
Executive Summary
Donation rates and trends
New Zealand has low deceased donation rates compared to other countries. In 2014 (and
for 2015 year to date) the donation rate improved, although our performance is still low
comparatively and lower than the donation rate per million of population (pmp) achieved in
the late 1990s.
In contrast, the number of live organ donors has generally followed an increasing trend over
the last 20 years and New Zealand has comparatively high rates of live donors pmp.
The waiting list information provides a clear indication that the demand for kidneys is greater
than the number of kidneys currently donated by deceased and live donors and that this gap
is increasing. There is also some indication that the availability of hearts, lungs and livers is
not meeting demand, but the gap is stable or for livers possibly decreasing. This may reflect
the way the waiting lists for these organs are managed (for instance, if the criteria is based
on the likely availability of organs so that only those with the highest need are accepted onto
the list, with the expectation that those on the list will receive an organ promptly).
Scope to increase deceased donation rates
Only a small number of people (less than 1%) will die in circumstances that make it possible
for organs to be donated for transplantation. The two main circumstances where deceased
donation is possible are as follows: donation after brain death (DBD) and after circulatory
death (DCD) (otherwise referred to as cardiac death).
Based on the Death Audit Data, practices in clinical settings do appear to be improving with
an increase in the percentage of potentially brain dead patients tested for brain death and an
increase the percentage of formal family discussions on donation occurring. However, there
has been a decrease in the percentage of donation that occur following formal discussion
with families.
In terms of the scope for increasing deceased donation rates, the number of brain dead
patients provides the upper bound of the maximum possible number of brain dead donors.
This paper includes two analysis of the potential scope for increasing the number of donors.
The first analysis is based on the potential pool of brain dead patients and the rates
achieved at each stage of the donation process by Australia following its reform. This
provides an estimated increase of 39%, but is based on DBD only. Adding an additional
10%, to reflect the likelihood of some DCD occurring, results in an estimated increase in
donors of 52%.
Organ Donation New Zealand (ODNZ) conducted an analysis of the missed donation
opportunities based on the audit filters included in the death audit data it receives. Based on
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this analysis, ODNZ estimated there is the potential to increase the number of donors by 20
to 40%.
Considered together, a realistic objective for the review to aim for would be a 40% increase
in donation, which would result in 18 additional donors per year. If an average of three
organs were successfully transplanted from each deceased donor, this increase would result
in an additional 54 patients receiving an organ each year.
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New Zealand donation rates – how have they changed over time?
Figure 1: Number of deceased donors over the last 20 years (1995-2014)
50
45
40
35
30
25
20
15
10
5
0
Source: International Registry on Oran Donation and Transplantation
The number of deceased donors in New Zealand has been quite variable. The number of
deceased donors increased from 1995 to a peak of 46 in 1998, before reducing and
stabilising in the mid to upper 30s for the next 15 years, with a couple of particularly low
performing years in 2005, 2006, and 2008.
The increase in donors in 2014 returned New Zealand to level achieved in 1998. The figures
from January to 4 November 2015 indicate the increase in 2014 has been sustained, as
there have already been 46 deceased donors1.
1
Data provided by ODNZ
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Figure 2: The rate of deceased donors (per million of population) over the
past 20 years (1995-2014)
Rate per million population
14
12
10
8
6
4
2
0
Deceased donors
20-Year Average
Control Limit (99.7% CI)
Source: International Registry on Organ Donation and Transplantation
Looking at the rate of donors (as measured by the number of donors per million of
population (pmp)) over the past 20 years, there has been no sign of significant fluctuation
from the twenty year average of 9.3 pmp (ie, any year to year change has been within the
control limits of normal variance).
While the number of donors achieved last year was a definite improvement over the number
of donors achieved in the last 15 years, our rates per million of population are still lower than
they have been in the past. This could be considered to imply that there is potential for
New Zealand to increase its rates to at least the level previously achieved. However,
donation rates are impacted by the potential pool of donors (i.e. the number of people that in
intensive care units who have suffered a fatal illness or injury which has led to severe and
irreversible brain damage). The number of road deaths in New Zealand has been decreasing
since the late 19802, which is likely to have impacted the size of the pool of potential donors.
The section on ‘what is the scope of improvement’ later in this paper (pX) considers what the
scope for improvement might be, based on the size of the potential pool of donors.
2
http://www.transport.govt.nz/research/roadtoll/annualroadtollhistoricalinformation/
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Figure 3: Instances of donation after brain death (DBD) and donation after
circulatory death (DCD)
50
45
Number of donors
40
35
30
25
20
15
10
5
0
2008
2009
2010
2011
Donation after Brain Death
2012
2013
2014
Donation after Circulatory Death
Source: ODNZ. 2014. Annual Report 2014.
The majority of New Zealand’s deceased donors donate following brain death DBD).
Donation following cardiac death (DCD) does occur in New Zealand, but to a much lower
extent. The national protocol for DCD was established by ODNZ in 2007.
Given the current low number of DCDs increasing the number of DCD could be an avenue
for increasing New Zealand’s overall donation rates. However, the identification of a potential
DCD is more difficult, as it requires a clinical judgement of how long it will take for the patient
to die following the withdrawal of treatment. DCD is only possible if the patient dies within a
timeframe that allows for the organs to be removed and still function well in recipients (this is
currently 60 minutes for kidneys)3.
Table 1: Ethnicity of deceased donors
European /
Caucasian
Māori
Pacific
Islander
Asian
Other
Total
2010
32 (78%)
2011
30 (79%)
2012
28 (74%)
2013
29 (81%)
2014
36 (78%)
Average
31.0 (78%)
5 (12%)
1 (2%)
3 (8%)
4 (11%)
6 (16%)
1 (3%)
3 (8%)
0 (0%)
5 (11%)
1 (2%)
4.4 (11%)
1.4 (4.0%)
2 (5%)
1 (2%)
41 (99%)
1 (3%)
0 (0%)
38 (101%)
3 (8%)
0 (0%)
38 (101%)
3 (8%)
1 (3%)
36 (100%)
1 (2%)
3 (7%)
46 (100%)
2.0 (5.0%)
1.0 (3.0%)
39.8 (101%)
Source: ANZOD Registry. 2015 Annual Report.
Averaged over the past five years, 11% of donors were Māori, while 16.6% of the population
were classified as Māori in the NZ Health Tracker (for the year ended 2013). Four percent of
donors were Pacific Islanders, while Pacific Islanders make up 7.3% of the population. Five
percent of donors were Asian, while none percent of the population are classified as Asian.
3
Dr Stephen Streat. Intensivist and Clinical Director, ODNZ. Personal communication. 6 November 2015.
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This information suggests that these ethnicities are under-represented in terms of organ
donation. However, whether this is an issue depends on the degree to which the ethnicity
impacts the matching of donors to recipients (ie. are there clinical differences between
ethnicities that impact whether an organ from a patient from one ethnicity will suit a recipient
from another ethnicity?). This is something we need to understand further.
Figure 4: Number and rate per million of population of live donors over the
last 20 years
80
20
18
70
16
60
14
50
12
40
10
8
30
6
20
4
10
2
0
0
Number of live organ donors
Live donors per million population (pmp)
Source: International Registry on Organ Donation and Transplantation
New Zealand’s number of live organ donations has generally followed an increasing trend
over the last 20 years. However, after peaking at 76 in 2008, the number dropped
successively in each of the next four years, declining to 57 by 2012. From 2012 numbers
increased again, possibly linked to initiatives introduced as part of the 2012 and 2014
Budgets. By 2014, numbers had regained 2008 levels. It is unclear whether this recent
improvement will be sustained.
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Donations rates - how well do we compare to similar countries?
Figure 5: Worldwide actual deceased and live organ donors 2013 (pmp)
Deceased Organ Donors, Per Million People
Source: International Registry in Organ Donation and Transplantation
Deceased Donors
Live Donors
Spain
Croatia
Malta
Belgium
Portugal
USA
France
Austria
Estonia
Slovenia
Italy
Norway
UK
Czech Rep.
Ireland
Uruguay
Belarus
Finland
35.1
35.0
34.0
29.9
28.3
25.9
25.5
24.6
24.4
24.3
22.2
22.0
20.8
20.5
18.8
18.3
18.0
17.7
35.1
35
34
29.9
28.3
25.9
25.5
24.6
24.4
24.3
22.2
22
20.77
20.5
18.8
18.3
18
17.7
Turkey
South Korea
Netherlands
Cyprus
Lebanon
Iceland
Saudi Arabia
Iran
Macedonia
USA
Denmark
Israel
UK
Kuwait
Mexico
Sweden
Switzerland
Japan
Latvia
Australia
Lithuania
Sweden
Canada
Hungary
Poland
Netherlands
Lexembourg
Switzerland
Argentina
Brazil
Iceland
Slovak Rep
Germany
Denmark
Israel
Iran
South Korea
17.0
16.9
16.7
16.0
15.7
15.6
15.4
15.3
14.9
13.7
13.5
13.2
12.3
11.1
10.9
10.1
9.5
8.7
8.4
17
16.9
16.7
16
15.7
15.6
15.4
15.26
14.9
13.7
13.5
13.2
12.3
11.1
10.9
10.1
9.5
8.7
8.4
Norway
Costa Rica
Australia
Argentina
Germany
Tunisia
Belgium
Azerbaijan
Austria
Spain
Ireland
Malta
Brazil
Czech Rep.
Trinidad & Tob.
Georgia
El Salvador
Hong Kong
New Zealand
8.1
8.1
7.76
7
6.6
6.4
6.3
6.1
5.6
5
4.6
4.3
3.9
3.7
3.7
3.7
3.2
3
2.9
2.5
2
1.8
1.8
0.8
0.6
0.5
Cyprus
Colombia
Romania
Chile
Panama
Hong Kong
Greece
Turkey
Costa Rica
Eduador
Paraguay
Venezuela
Mexico
Kuwait
Peru
Bulgaria
Russia
Saudi Arabia
Trinidad & Tob.
Lebanon
Dom. Rep.
Tunisia
Japan
Malaysia
7.8
7.0
6.6
6.4
6.3
6.1
5.6
5.0
4.6
4.3
3.9
3.7
3.7
3.7
3.2
3.0
2.9
2.5
2.0
1.8
1.8
0.8
0.6
0.5
New Zealand
France
Italy
Portugal
Panama
Hungary
Greece
Uruguay
Romania
UAE
Venezuela
Latvia
Belarus
Dom. Rep.
Columbia
Moldova
Finland
Lithuania
Russia
Poland
Malaysia
Slovak Rep.
Ecuador
Paraguay
Bulgaria
Croatia
Estonia
Peru
46.6
36.5
31.2
29.8
27.2
24.7
24.7
20.0
19.0
18.8
18.7
18.2
17.8
16.7
16.7
16.4
14.2
14.2
46.6
36.5
31.24
29.75
27.2
24.7
24.7
20
19
18.8
18.7
18.2
17.8
16.7
16.7
16.4
14.2
14.2
13.6
13.5
13.2
10.8
10.2
10.1
9.9
9.6
9.3
9.0
8.6
8.3
8.0
7.9
7.9
7.7
7.1
6.7
6.7
13.6
13.5
13.15
10.8
10.2
10.1
9.9
9.6
9.3
9
8.6
8.31
8
7.9
7.9
7.7
7.1
6.7
6.7
6.4
6.3
6.1
5.2
4.6
4.0
4.0
3.6
3.4
3.3
3.0
3.0
3.0
2.8
2.5
2.5
2.4
2.3
2.1
1.9
1.9
1.8
1.7
1.7
1.6
0.9
0.8
6.4
6.3
6.1
5.2
4.6
4.03
4
3.6
3.4
3.3
3
3
3
2.8
2.5
2.5
2.4
2.3
2.1
1.9
1.9
1.8
1.7
1.7
1.6
0.9
0.8
In 2013, New Zealand had a low deceased donation rate compared to other countries,
placing in the bottom half of comparative graphs (refer figure 5).
In contrast, New Zealand has comparatively high rates of live donors per million of
population (refer Figure 5) ranking 19th out of the 64 countries that provide data to the
International Registry on Organ Donation and Transplantation. Although there is a large
difference between the rates of the countries ranked in the top third of countries, with the top
performing country reporting 46.6 pmp compared to the 21st highest performing country
reporting 13.2 pmp.
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One potential reason for New Zealand’s higher performance in relation to rates of live donors
is that the low deceased donation rates and resulting long waiting list for kidneys has led to
patients seeking live donors. Countries with high deceased donation rates generally have
much lower live donation rates and vice versa (although the USA is an exception; while it
has higher deceased than live donation rates, it is in the top 10 performing countries for
both) (refer Figure 5).
Each live donor donates one organ (or part of one organ) compared to deceased donors
who donate an average of around three organs (refer figure 9). Therefore, while live
donations do assist in addressing the gap between those that need organs and the number
of organs available, it takes a greater increase in live organ donors to achieve the same
outcomes as a lesser increase in deceased organ donors. In addition, live organ donation is
not possible for all organs. In New Zealand live organ donation occurs for kidneys and
livers4. Therefore, deceased organ donation is particularly important for patients requiring a
heart or lung. Although it is worth noting that patients with a live donor kidney transplant
show improved survival compared to those with a deceased donor transplant5.
4
ONDZ. 2014. Annual Report 2014.
5
Beechey et al. 2013. Improvements in live organ donation project: Live kidney donor fact
warehouse.
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Figure 6: Worldwide actual deceased organ donors 2014 (pmp)
0
Spain
Croatia
Malta
Portugal
USA
Belgium
Austria
Italy
Slovenia
Norway
Finland
Uruguay
UK
Hungary
Belarus
Sweden
Australia
Poland
Latvia
Netherlands
Estonia
Brazil
Switzerland
Denmark
Ireland
Argentina
Romania
Germany
Lithuania
New Zealand
Iceland
South Korea
Iran
Kuwait
Israel
Colombia
Lexembourg
Cyprus
Bulgaria
Hong Kong
Turkey
Costa Rica
Trinidad & Tob.
Saudi Arabia
Russia
Dom. Rep.
Japan
Canada
Chile
Czech Rep.
Eduador
France
Greece
Lebanon
Malaysia
Mexico
Panama
Paraguay
Peru
Slovak Rep
Tunisia
Venezuela
5
10
15
20
25
30
35
40
36
35
28.6
27.7
27
26.8
25.5
23.1
22.8
22.6
22.1
20.7
20.4
20.1
17.5
17.1
16.1
15.4
15.3
15.3
15.2
14.2
14.1
14
13.8
13
11.2
10.7
10.3
10.2
9.2
9
8.7
8
7.7
7.3
7.3
6.5
5.4
5.4
5.4
3.8
3.8
3.4
3.2
3
0.7
Source: International Registry on Organ Donation and Transplantation
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For 2014, New Zealand’s rate has improved to 10.2 deceased donors per million people
(pmp). However, this continues to place New Zealand in the bottom half of the countries that
have reported 2014 figures (particularly given a greater proportion of the lower performing
countries have not yet reported data). New Zealand’s 2014 donation rate at 10.2 pmp is still
much lower than the highest preforming country (Spain with 36 pmp) and countries that have
recently undertaken reform programmes, eg, the United Kingdom (with 20 pmp) and
Australia (with 16 pmp).
Until the mid-2000s New Zealand and Australia had very similar rates of deceased donation
per million of population to New Zealand (refer figure 7). Following a taskforce in 2007-08,
Australia has successfully implemented a reform agenda to increase its donation rates.
The United Kingdom has previously had higher rates than both New Zealand and Australia.
Following its own taskforce in 2007-08, it has also been successful in increasing donation
rates, resulting in an increasing gap between its rates and New Zealand’s (refer figure 7).
Although, both Australia and the United Kingdom experienced a slight decrease in donation
rates in 2014.
Figure 7: Donation rates (pmp) for New Zealand compared to Australia and
the United Kingdom
25
20
15
New Zealand
10
Australia
United Kingdon
5
2014
2013
2012
2011
2010
2009
2008
2007
2006
2005
2004
2003
2002
2001
2000
1999
1998
1997
1996
1995
0
Year
Source: International Registry on Organ Donation and Transplantation
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How well do we utilise the donations we have?
Figure 9: Total number of organs transplanted from New Zealand deceased
donors
(Note, some organs from New Zealand donors are transplanted to Australian recipients and vice versa)
160
Number of organs
140
120
100
80
60
40
20
0
2005
2006
2007
2008
2009
2010
2011
2012
2013
2014
Source: ODNZ Annual Report 2009, 2010 and 2014
While the number of deceased donors had been tracking downwards from 2009 to 2013, the
number of organs transplanted from deceased donors over this time period have been
reasonable stable (ranging between 114 and 123 organs per year). In 2014, there were 136
organs transplanted from a deceased donor, reflecting the increase in donations that year.
Figure 8: Number of organs transplanted from New Zealand deceased
donors
70
60
Number of organs
50
Kidneys
40
Heart
Lungs
30
Liver
Pancreas
20
10
0
2005
2006
2007
2008
2009
2010
2011
2012
2013
2014
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Source: ODNZ Annual Report 2009, 2010 and 2014
In terms of the specific organs transplanted from deceased donors, in 2014 there 67 kidneys
transplanted, 17 Hearts, 20 lungs, 32 livers and 2 pancreas.
As a result, 130 patients received a transplant (with one patient receiving a double kidney,
one combined heart and lung transplant, two combined liver and kidney transplants and two
simultaneous kidney and pancreas transplants).
Another way to consider how well donations are utilised would be to analyse the average
number of organs donated per deceased donor. However, changes in the types of
deceased donation that occur will impact the average number of organs retrieved per
deceased donation. For example, if one of the mechanisms to increase the number of
donors was to encourage more donation after cardiac death or apply wider criteria for
donation after brain death criteria, this would result in more organs overall, but a smaller
average number of organs per deceased donor. Therefore, the more relevant metric is the
total number of organs transplanted.
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How much demand and unmet need is there?
There is no perfect measure of demand or unmet need. The best indication is provided by
the number of people ‘accepted’ for a transplant. However, this is likely to be lower than the
number of patients who would benefit from a transplant, as access to waiting lists could be
impacted by the availability of organs. If there were more organs available it would be likely
that the criteria would be amended and more patients would be accepted for a transplant,
particularly for lungs, livers, and hearts. The number of patients accepted for waiting lists is
also impacted by advances in the therapies available to treat different conditions. Waiting list
data does not include information on ethnicity.
Kidneys
Figure 10: Number of patients accepted for kidney transplants (full and active
waiting list numbers at the end of the month) - January 2005 to October 2015
800
700
600
500
400
300
200
Kidney - active
Linear (Kidney - total)
Linear (Kidney - active)
Source: NZ Blood Service
The ‘total’ line in figure 10 includes all those patients accepted for a transplant, including a
proportion who have been temporarily suspended since then. The ‘active’ line includes only
those patients who would be available to receive a kidney if one was to become available
today.
Both lines have been gradually increasing over the last 10 years, suggesting a growth in
demand that has not been meet by the generally stable number of donations (although the
number of donations were lower in 2006 and 2008). Since 2013, the number of patients
waiting for a kidney transplant (total and active) appears to have stabilised.
15
Sep-15
Jan-15
May-15
Sep-14
May-14
Jan-14
Sep-13
Jan-13
May-13
Sep-12
Jan-12
May-12
Sep-11
May-11
Jan-11
Sep-10
Jan-10
May-10
Sep-09
Jan-09
May-09
Sep-08
May-08
Jan-08
Sep-07
Jan-07
Kidney - total
May-07
Sep-06
Jan-06
May-06
Sep-05
May-05
0
Jan-05
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Figure 11: Average waiting time before a transplant for a kidney – 2005 to 2014
35
30
Months
25
20
15
10
5
0
2005
2006
Mean
2007
2008
Median
2009
2010
2011
Linear (Mean)
2012
2013
2014
Linear (Median)
Source: NZ Blood Service
Another way to look at how well the demand is being met is to look at the average waiting
time. Figure 11 includes both the mean and the medium waiting time, as patients with acute
conditions get prioritised to receive an organ much more quickly than those with chronic
conditions, although this is more relevant for livers, hearts and lungs (which are graphed
separately below).
Both measures of waiting time indicate an increase in waiting times since 2005. In 2014, the
mean waiting time was 32 months (2.7 years) compared to 25 months (2.1 years) in 2005. In
2014 the median waiting time was 30 months (2.5 years) compared to 22 months (1.8 years)
in 2005.
Figure 12: Number of patients removed from the waiting list without receiving a
kidney transplant – 2005 to 2014
120
Number of patients
100
80
60
40
20
0
2005
2006
2007
2008
2009
2010
2011
2012
2013
2014
Source: NZ Blood Service
The waiting times above only include those that receive a kidney. Therefore, to consider the
full picture, you also need to look at the number of patients removed from the waiting list
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without receiving a kidney. These patients would generally have been removed as they
became too unwell (which could be due to their original condition deteriorating or another
condition developing or deteriorating), although some may have been removed for other
reasons, such as psychosocial complications. Between 2005 and 2008, the number of
patients removed from the waiting list without receiving a kidney was quite variable. Since
2009 it has steadily increased, with a decrease in 2014. The decrease in 2014 may reflect
the increase in both deceased and live donors that year.
Taken together these three graphs (figure 10, 11, and 12) indicate the demand for kidneys is
much greater than the availability. There are a large number of patients waiting for a kidney;
they are waiting for around two and half years; and for many of these patients their health
deteriorates during this time to the point when they are no longer able to receive a kidney.
The gap between demand and availability appears to be increasing for all three measures.
Hearts [Helen Gibbs from the Heart and Lung Transplant centre has
concerns with the accuracy this data, so has arranged for it to be checked]
Date
Heart
Linear (Heart)
Source: NZ Blood Service
From 2011 until the end of 2013 the number of patients waiting for a heart transplant was
generally higher compared to the previous 5 years. The number deceased until mid-2014,
after which point it has been generally increasing.
The number of patients waiting for a heart is much lower compared to those waiting for a
kidney, so the differences reflect only a few patients. Looking at the trend line over the last
10 years, the number of patients waiting for a heart transplant has increased by around four.
17
Jun-15
Jan-15
Aug-14
Mar-14
Oct-13
May-13
Dec-12
Jul-12
Feb-12
Sep-11
Apr-11
Nov-10
Jun-10
Jan-10
Aug-09
Mar-09
Oct-08
May-08
Dec-07
Jul-07
Feb-07
Sep-06
Apr-06
Nov-05
Jun-05
18
16
14
12
10
8
6
4
2
0
Jan-05
Number of patients
Figure 13: Number of patients on the waiting list for a heart at the end of the
month - January 2005 to October 2015
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Months
Figure 14: Average waiting time before a transplant for a heart – 2005 to 2014
9
8
7
6
5
4
3
2
1
0
2005
2006
Mean
2007
2008
2009
Median
2010
2011
Linear (Mean)
2012
2013
2014
Linear (Median)
Source: NZ Blood Service
Over the past 10 years the mean waiting time before a patient receives a transplant has
been variable, but averaged over that time it has been reasonably constant. Over the past
10 years, the median waiting time has decreased slightly. In 2014, the mean waiting time
was same as it was in 2005 (7 months). In 2014 the median waiting time was 4 months
compared to 3 months in 2005.
The mean and median waiting time for a heart is much lower than for a kidney. For example,
the mean waiting time in 2014 for a heart was 7 months compared to 32 months for a
kidney. This may be a reflection of the urgency associated with requiring a heart transplant
(as opposed to a kidney transplant where dialysis is an option).
Figure 15: Number of patients removed from the waiting list without receiving a
heart transplant – 2009 to 2014
14
Number of patients
12
10
8
6
4
2
0
2009
2010
2011
2012
2013
2014
Source: ANZOD. 2015. Annual Report 2015.
Aside from a large increase in 2013, the number of patients removed from the waiting list
without receiving a transplant has been largely stable in the past size years (between three
and seven). While these numbers are quite low, they are quite significant when considered
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against the number of patients on the waiting list (between 2009 and 2014 on average eight
patients were waiting for a heart transplant).
Considered together, the trend is that slightly more people are being accepted for a
transplant, they are waiting around the same time or slightly less (depending on the
measure) and a sizable proportion are being removed from the list due to complications,
health deterioration, or death. This would suggest that the availability of hearts is not
matching the demand for them, but this gap has been reasonably stable.
Lungs [Helen Gibbs from the Heart and Lung Transplant centre has
concerns with the accuracy this data, so has arranged for it to be checked]
Jun-15
Jan-15
Aug-14
Mar-14
Oct-13
May-13
Jul-12
Dec-12
Feb-12
Sep-11
Apr-11
Jun-10
Nov-10
Jan-10
Aug-09
Oct-08
Mar-09
May-08
Dec-07
Jul-07
Feb-07
Sep-06
Apr-06
Nov-05
Jan-05
18
16
14
12
10
8
6
4
2
0
Jun-05
Number of patients
Figure 16: Number of patients on the waiting list for a lung at the end of the
month - January 2005 to October 2015
Date
Lung
Linear (Lung)
Source: NZ Blood Service
Over the past 10 years the number of patients waiting for a lung transplant has generally
increased (by around 4 patients), although it has varied quite a lot. In mid-2009, there was a
3 month period where there was no-one waiting for a lung transplant. However, between
mid-2009 and mid-2012 the number of patients waiting for a lung transplant increased to a
peak of 17, before trending downwards until mid-2014, followed by a sharp increase
upwards again in early-2015. This year, the number of patients waiting for a lung transplant
seems to have decreased.
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Figure 17: Average waiting time before a transplant for a lung – 2005 to 2014
10
Months
8
6
4
2
0
2005
2006
Mean
2007
2008
2009
Median
2010
Linear (Mean)
2011
2012
2013
2014
Linear (Median)
Source: NZ Blood Service
Reflecting the low numbers accepted for a lung transplant in 2009, the mean and median
waiting time was very low that year. From 2010 to 2012 both measures increased and then
decreased between 2012 and 2014. In 2014, the mean waiting time was 5 months compared
to 7 months in 2005. In 2014 the median waiting time was 3 months compared to 7 months
in 2005.
Figure 18: Number of patients removed from the waiting list without receiving a
lung transplant – 2009 to 2014
14
Number of patients
12
10
8
6
4
2
0
2009
2010
2011
2012
2013
2014
Source: ANZOD. 2015. Annual Report 2015.
The number of patients removed from the waiting list without receiving lung transplant has
been quite variable over the past six years, ranging from one to thirteen.
While waiting times have improved slightly, the variability in the number of patients removed
from the waiting list without a lung transplant makes it difficult to comment on how well the
availability of organs is meeting demand.
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Livers
Figure 19: Number of patients on the waiting list for a liver at the end of the
month - January 2005 to October 2015
Number of patients
35
30
25
20
15
10
5
Jun-15
Jan-15
Aug-14
Mar-14
Oct-13
May-13
Jul-12
Dec-12
Feb-12
Sep-11
Apr-11
Jun-10
Nov-10
Jan-10
Aug-09
Oct-08
Mar-09
May-08
Dec-07
Jul-07
Feb-07
Sep-06
Apr-06
Nov-05
Jan-05
Jun-05
0
Date
Liver
Linear (Liver)
Source: New Zealand Liver Transplant Unit, Auckland DHB
While the number of patients waiting for a liver at the end of the month has slightly increased
over the past 10 years, it has generally been trending downwards since mid-2011.
Figure 20: Average waiting time before a transplant for a liver – 2005 to 2014
8
7
Months
6
5
4
3
2
1
0
2005
2006
Mean
2007
2008
Median
2009
2010
Linear (Mean)
2011
2012
2013
2014
Linear (Median)
Source: New Zealand Liver Transplant Unit, Auckland DHB
Over the last 10 years the mean waiting time has trended upwards and the medium
downwards. In the last 3 years, both the mean and the median waiting time have decreased.
The mean waiting time in 2014 was the same as it was in 2005 (4 months). In 2014 the
median waiting time was 2 months compared to 3 months in 2005.
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Figure 21: Number of patients removed from the waiting list without receiving a
liver transplant – 2005 to 2014
14
Number of patients
12
10
8
6
4
2
0
2005
2006
2007
2008
2009
2010
2011
2012
2013
2014
Source: New Zealand Liver Transplant Unit, Auckland DHB6
The number of patients removed from the waiting list without receiving a liver transplant
increased from 2008 to 2011 and has deceased since then. In 2014, seven patients were
removed from the waiting list without receiving a transplant due to their health deteriorating.
Since 2012 the number of patients waiting has generally decreased, the waiting time has
decreased, and the number of patients who are removed from the waiting list due to
deteriorating health has decreased. As there are still patients being removed without
receiving a liver, this could suggest the availability is still not adequate for demand, but the
gap has been reducing recently.
6
Note, for kidney, heart, and lung the number of patients removed from the waiting list without receiving a transplant included
all patients removed. However, for liver it does not include the small number of patients that are removed from the waiting list
as their health has improved or due to psychosocial complications.
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What is the potential for increasing deceased organ donation?
Death audit data - Time trends
Only a small number of people (less than 1%) will die in circumstances that make it possible
for organs to be donated for transplantation. Deceased donors in New Zealand are people
who die in an intensive care unit (ICU), who have suffered a fatal illness or injury which has
led to severe and irreversible brain damage and have been mechanically ventilated during
their treatment in the ICU.
The two main circumstances where deceased donation is possible are as follows: brain
death (DBD) and circulatory death (DCD) (otherwise referred to as cardiac death).
Brain death occurs when there is irreversible and complete loss of vital brain functions and
the ventilator is all that keeps the bodily organs alive. Two separate assessments are
required to be carried out by two doctors to confirm that the patient's brain has died.
Some people with non-survivable injuries to the brain never become brain dead because
they retain some brain stem function. In these circumstances donation after cardiac death
might be an option when it is clear that the individual is dependent on ventilator support and
cannot survive. A decision to withdraw treatment is made by the medical team and the
family, independent from any discussion about donation.
Within that potential pool of deceased donors, the donation rates achieved are then
determined by the outcome of a number of key steps, i.e. the percentage tested for brain
death, the percentage of families formally spoken to about donation, and the percentage of
families that provide consent. Organ Donation New Zealand collects information on these
steps. Refer to Appendix A for background information, explanatory notes and definitions.
The number of deaths of persons ‘ventilated with severe brain damage’ includes all potential
instances of donation after brain death (DBD) and donation after circulatory deaths (DCD);
however, it also includes patients that would not be suitable to become a donor.
The number of brain dead patients provides the upper bound of the maximum possible
number of brain dead donors
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Table 3: Death Audit Numbers
ICU deaths
Deaths of persons
‘ventilated with
severe brain
damage’
Persons ‘possible
brain dead’
Persons ‘possible
brain dead’ tested
Referrals to ODNZ
of potential organ
donors
Formal organ
donation
discussions with
families
Number of
donors7
2008-2012
Yearly average
(baseline period)
1134.4
350
2013
2014
2015 YTD
(1 Jan – 4 Nov)
1202
371
1242
411
968
310
119.8
116
153
126
74.6
70
91
88
94.6
103
112
107
75.2
91
115
112
38.2
36
46
46
Source: ODNZ
These figures highlight the reasonably small number of patients involved in each step.
While the table indicates some increases and decreases by year, these numbers need to be
considered within the context of the number of patients in the stage above. The table below
analyses the percentage of patients that progress from one step to the next, assuming the
following pathway: ‘potential brain dead’, ’possible brain dead tested’, ‘formal donation
discussion with families’ and ‘donation’.
Note, the number of formal discussions with families will include discussion with the families
of potential DCD patients, meaning the percentage is likely to be higher than if it only
included the discussion with families of potential BDB patients.
To attempt to reflect how well potential opportunities for DCD are occurring, table 4 also
includes the percentage of family discussions considered against the number of deaths with
severe brain damage. The optimal percentage for this step is unknown, as not all those with
severe brain damage would be suitable for donation. However, it is useful to include in order
to see whether the percentage has increased or not.
7
This would include all those that have consented, but not any that consented but were unable to proceed for medical reasons
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Table 4: Percentage of patients who progress though the potential donation steps
Percentage of
death with
severe brain
damage where
formal
discussion with
the family
occurred
Percentage of
‘possible brain
dead’ tested
Percentage of
patients tested
for brain death
where formal
discussion with
family occurred
Percentage of
formal
discussions
where donation
occurred
Percentage of
death with
severe brain
damage
referred to
ODNZ
2008-2012
Yearly average
(baseline
period)
21.5%
2013
2014
2015 YTD
(1 Jan – 4 Nov)
24.5%
28.0%
36.1%
62.3%
60.3%
59.5%
69.8%
101%
130%
126%
127%
51%
40%
40%
41%
27.0%
27.8%
27.3%
33.9%
Source: ODNZ
The information collected indicates that the percentage of possibly brain dead patients
tested to confirm brain death has increased. However, there is still scope to improve with
only around 70% of possibly brain dead patients tested this year to date.
The information indicates that a larger number of families are being approached to discuss
organ donation than the number that would be expected based on the number of patients
tested for brain death (ie, above 100%). As mentioned above, this may reflect the fact that
donation is discussed with families of patients who could potentially donate after circulatory
death. It may also reflect that some ICUs are approaching families before testing for brain
death. ODNZ has indicated that some clinicians do discuss potential DBD organ donation
with families prior to brain death confirmation and some may not confirm brain death if the
family do not agree to donation.
Regardless, the high percentages indicate that organ donation discussions appear to be
occurring when potential donation opportunities occur. The change in the percentages
indicates an improvement since the baseline period of 2008-2012. This is supported by the
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increase in percentage of instances where formal discussions are occurring with families of
patients with severe brain damage.
The percentage of instances where donation occurs following a formal discussion with the
family has decreased. Note, this does not reflect the “family consent rate”, as it also includes
situations where the family provided consent but the donation was unable to proceed due to
medical reasons (e.g. medical contraindications, when DBD was discussed but brain death
did not develop, or when DCD was discussed but was not possible).
Families of European patients are statistically more likely agree to organ donation compared
to families of non-European patients. Numbers in the other ethnicities are too small to reach
statistical significance8.
There is a substantial and statistically significant difference between the 11 larger ICUs in
the donation steps; i.e the rates of discussion with ODNZ, the formal discussion of organ
donation with families of patients; and in the proportion of possibly brain dead patients who
are tested for brain death. In smaller ICUs, the numbers are too small to reach statistical
significance9.
Death audit data – Scope to increase deceased donation
A key question for the review is: what is the scope for increasing deceased donation rates
given the size of the available pool of potential donors in New Zealand? This paper includes
two analyses considering this question. The first is based on a top down approach starting
from the potential pool of brain dead donors. The second analysis is a bottom-up approach,
based on the death audit filters implemented by ODNZ to help identify where a potential
might have been “missed”.
Analysis 1: Potential scope to increase deceased donation based on what
Australia has achieved
Australia has a target of organ donation to be formally discussed with families of confirmed
brain dead patients 100% of the time and achieved 96% in 2013. It has a target of 75% of
families’ consenting to organ and tissue donation. In 2013 the rate of family consent was
62%10.
If New Zealand achieved similar request and consent rates to what Australia has currently,
then it could increase the number of deceased donors to 64 per year, an increase of 39%
(compared to 46 in 2014). This would increase our rate of donors per million of population to
14.211.
This is based on the following assumptions/targets:


an average of 124 potentially brain dead per year (based on the average of 2008-2014)
100% of potential brain dead patients are tested
8
J Judson, Medical Specialist, ODNZ. Personal communication. 11 November 2015.
J Judson, Medical Specialist, ODNZ. Personal communication. 11 November 2015.
10 Organ and Tissue Authority. 2014. Annual Report 2013-2014.
11
Based on a population size of 4,509,700 the estimated population for June 2014 (Statistics New Zealand. 2015. New Zealand
in Profile 2015)
9
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



4% are found not brain dead12
Where a patient is confirmed as brain dead, a formal discussion about donation occurs
with the family in 95% of instances
60% of families provide consent.
and 6% are unable to proceed for medical reasons13.
The estimate above is based on what has been achieved to date in Australia. If New
Zealand achieved the targeted rates of Australia (i.e. a discussion with families occurred in
100% of instances where brain death is confirmed and families consented 75% of the time),
the number of donors would increase to 84 (18.6 pmp), an increase of 83%.
The estimates above are based on the potential pool of DBD donors only, so does not
include potential DCD donors. In 2014, 13% of deceased donation occurred following
circulatory death. However, in the four previous years this was much lower, ranging from 0–
5%.
If the number of donors estimated above was increased by 10% (to reflect additional DCD
donors) the:


first estimate, based on Australia’s current achievements, would increase to 70 donors
per year and 15.2 pmp (an increase of 52%)
second estimate, based on Australia’s targeted rates, would increase to 92 donors and
20.4 pmp (an increase of 100%).
Analysis 2: Potential scope to increase deceased donation based on an analysis of
missed donation opportunities
In 2012, the death audit was expanded in scope by adding five “audit filters” which can be
triggered at the time of data entry if certain conditions are met. Four of the five filters were
designed to help identify (and provide explanation for) situations where a potential donor
might have been “missed” or where donation might have been possible if clinical practice
was different. These four filters detect:




missed potential DBD donors
missed potential DCD donors
patients possible brain dead but not tested for brain death
patients who died with severe brain damage but were neither brain dead, nor had an
artificial airway removed prior to death.
The fifth filter (tested for brain death and found not to be brain dead) identified situations
where brain death testing may have been undertaken prematurely. There are no particular
implications for organ donation per se of triggering this filter, but it is ODNZ’s view that this
should be a rare event and that each occasion where the filter is triggered should be
reviewed as it might have implications for education and clinical practice.
Between 1 July 2012 and 30 June 2015, one or more of the five audit filters was triggered for
410 patients14. The explanations given by ICU staff for triggering the audit filters were
12
ONDZ. 2014. The ICU Death Audit – 25 November 2014 (a presentation)
In 2014, 6% of intended donors (3) were unable to proceed (ANZOD Registry. 2015. 2015 Annual Report)
14 Data provided to the Ministry of Health by ODNZ on 6 November 2015.
13
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retrospectively classified by ODNZ. The main explanations were: donation was
unsupportable (24.4%), family declined donation before formal discussion (22.4%), judged
medically unsuitable by the ICU without discussion with ODNZ (12.9%), no potential for
donation as determined by ODNZ 8.3%, and the ICU decided not to discuss donation with
the family (5.9%).
ODNZ reviewed the responses and considers in at least 165 occasions (40%) there are no
changes in practice that could have led to possible organ donation. There were 14 occasions
(4% of patients who triggered filters) over the three year period where a potential donation
opportunity was missed. In between these numbers (4 and 40%)clear extremes there may
be instances where changes in practice may have resulted in a different outcome.
Based on this data, ODNZ consider it may be possible to increase the number of deceased
donors by around 2-4 donors per million, representing a 20-40% increase (based on the
2014 donation rate of 10.2 pmp).
Table 5: Summary of estimates of the scope to increase deceased donation
Based on only DBD
Analysis 1A:
Based on Australia’s current
formal discussion with family
and consent rates
Analysis 1B:
Based on Australia’s target
formal discussion with family
and consent rates
Analysis 2:
Based on audit filters
64 donors
(an increase of 39%)
Including an estimation of
DCD
70 donors
(an increase of 39%)
84 donors
(an increase of 86%)
92 donors
(an increase of 100%)
An increase of 20-40%
Given Australia has taken 8 years to raise its request and consent rates to current levels, it
seems more realistic for New Zealand to, at least initially, aim for the rates Australia has
currently achieved rather than its targeted rates.
When considered alongside ODNZ’s analysis of the audit filters, it would appear a potential
objective for the review to aim for would be a 40% increase in deceased donations (18
additional donors per year), which would result in a donation rate of 64 donors per year and
14.2 pmp.
If an average of three organs were successfully transplanted from each deceased donor, this
increase would result in 192 patients receiving an organ each year, an increase of 54
patients.
Given the reasonably low number of patients waiting for a heart, lung and liver (12 for a
heart, 8 for a lung, and 16 for a liver as of the end of September 2015) an increase of this
size would mean all those currently identified as requiring a heart, liver and lung would be
able to receive one quite promptly. In addition, there would be scope to adjust the criteria for
those waiting lists so that patients who would benefit from a transplant but do not currently
meet the criteria would be able to receive one.
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In contrast, at the end of September 2015 there were 449 on the active waiting list for a
kidney and 634 patients that had been accepted for a kidney transplant. An additional
18 donors a year would help reduce this list (particularly given each donor could potentially
donate two kidneys), but the waiting list would still be quite significant.
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Appendix A:
Notes provided by Organ Donation New Zealand (ODNZ) to accompany data prepared
for the Ministry of Health for the Expert Advisory Group on Organ Donation
Prepared by Dr Stephen Streat FRACP, Intensivist and Clinical Director, ODNZ
6th November 2015
Introduction
Organ Donation New Zealand (ODNZ) created a confidential, voluntary, on-line national
audit (“The ODNZ ICU Death Audit”) of all deaths in the 24 ICUs in New Zealand public
hospitals in late 2007. Data are contributed to this audit by staff from each of the ICUs soon
after the death of any patient in that ICU and are stored in a secure encrypted state in by a
private IT service provider. ODNZ has access to the de-identified data but the identity of the
patient is known only to the staff in the ICU, and not discoverable by ODNZ. ICU staff enter
the data in a timely way and the data are comprehensive and of high quality.
The data are used by ODNZ and the ICUs as part of an integrated comprehensive program
of clinical practice improvement, in accordance with the requirements in the ODNZ service
specification to “further develop, maintain and enhance nationally consistent processes for
deceased-donor organ donation in New Zealand” and to “provide as many highest quality
organs and tissues as possible for transplant recipients in New Zealand.”
ODNZ also reports data quarterly from the audit to the Ministry of Health. The data are
sensitive and can be misinterpreted without an understanding of the processes involved in
deceased donation, including donation after brain death (DBD) and donation after circulatory
death (DCD). These explanatory notes are given to provide some of that understanding.
Explanatory notes and definitions
1)
Deceased donors in New Zealand are persons who die in an intensive care unit (ICU),
and who have suffered a fatal illness or injury which has led to severe and irreversible
brain damage, most commonly as a result of spontaneous bleeding into the brain and
less commonly as a result of physical injury (trauma) or as a result of inadequate blood
flow to the brain during a period of cardiac arrest, due to heart disease or various forms
of asphyxia.
2)
These patients have been mechanically ventilated at some stage during their treatment
in the ICU; some of them will have become brain dead while others who are not brain
dead will die after intensive treatment (including mechanical ventilatory support) has
been withdrawn as it is no longer in the patients best interest. Such decisions to
withdraw treatment (in patients who are not brain dead) are taken by consensus
between the treating clinicians and the patients family and are prior to and independent
of consideration of possible organ donation.
3)
Brain death is a condition which develops only in ICUs. It occurs when there is an
increase in the pressure inside the (closed box) skull as a result of a progressive
process of brain swelling and sometimes bleeding and this pressure eventually rises to
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the point where it is so high as to cut off the inflow of blood to the whole brain, which
then dies. However, mechanical ventilatory support (which had been earlier
commenced) is continued during this process. As a result, when the persons
spontaneous breathing stops (when the whole brain dies), the ventilator continues to
provide oxygen to and remove carbon dioxide from the blood and the circulation of
blood continues. Brain dead persons are immobile, unresponsive and do not
spontaneously breathe. In Australia and New Zealand brain death is determined to be
present according to a strict and explicit protocol (which is part of the “ANZICS
Statement on Death and Organ Donation”). This protocol requires that there be
evidence of brain damage sufficient to account for the findings of brain death, the
absence of issues (such as sedatives or hypothermia) which might confound the
examination findings, a period of at least four hours of observation of “apparent loss of
brain activity” and two separate examinations of brain function (including brain stem
reflexes and the ability to breathe) carried out by two separate doctors. Where this is not
possible (for example in the presence of long acting sedatives), the protocol requires
that the complete absence of blood flow to the brain must be demonstrated by a reliable
method of imaging.
Persons who are brain dead are (in both New Zealand and Australia) legally dead at the
time that brain death is confirmed (when the entire protocol for the determination of
brain death is complete). Although both ANZICS and ODNZ recommend that all persons
“apparently brain dead” undergo the formal process of examination or blood flow
determination required to determine that brain death is present, there is no legal or other
requirement on doctors to do so and there is variability in the extent to which brain death
is determined. Accordingly, the exact incidence of brain death is unknown (in New
Zealand or in other jurisdictions). The number of brain dead persons provides the upper
bound of the maximum possible number of brain dead (DBD) donors and can only be
estimated.
4)
DCD (currently) in New Zealand takes place according to a national protocol established
by ODNZ in 2007, in consultation with transplant services and with national ethics
committee approval. This protocol is entirely consistent with the ANZICS Statement on
Death and Organ Donation and with the (Australian) national DCD protocol. In New
Zealand potential DCD donors must have severe brain damage, be aged 60 or less, and
be about to have intensive treatment (including mechanical ventilatory support and an
artificial airway) withdrawn, as a result of a consensus decision of the treating clinicians
and the patients family that continuing such treatments are no longer in the patients best
interests. Such a decision must take place prior to and independent of any consideration
of possible donation. Potential DCD donors must also be considered “likely to die within
a time frame after treatment withdrawal which allows for organs to be removed after
their death and function well in recipients” – currently 60 minutes (for kidneys). Family
agreement to organ donation under a DCD condition involves an informed consent
discussion around the process of withdrawal of treatment, the presence of the family,
the location of treatment withdrawal, the use of medication if required to ensure patient
comfort during the dying process, the determination of death after circulatory arrest, and
other issues. ODNZ recommends that families of potential DCD donors only have a
discussion about DCD donation after the treating ICU team has discussed the situation
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with ODNZ medical specialists. However, there is no legal or other requirement for them
to do so.
5)
ODNZ recommends that “formal discussion” of organ donation only take place after
brain death has been confirmed (in potential DBD donors) and only after the family
understand and accept that treatment will soon be withdrawn (in potential DCD donors).
While it is very likely that this recommendation is strictly adhered to with respect to
potential DCD donors, it is well known that some clinicians do discuss potential DBD
organ donation with families prior to brain death confirmation, and some may not
confirm brain death if the family do not agree to donation. Recognising this practice
variability is essential to an understanding of the relationship between the number of
formal discussions, the number of patients tested or confirmed to be brain dead and the
number of organ donors.
6)
As part of the process of audit-based clinical practice improvement, ODNZ has sought
to increase the number of referrals to ODNZ, the number of occasions in which patients
“possibly brain dead” are tested for brain death and the number of occasions in which
there is a “formal discussion of donation”, as these three events (inter alia) are crucial
steps in the process of deceased donation and can be expected only to increase (and
not decrease) the number of occasions in which donation actually takes place.
7)
The ODNZ ICU death audit uses the following definitions of the data elements in the
database:
a) Patients “ventilated with ‘severe brain damage’” are those who die in ICU, having
been ventilated at some time during their ICU admission, and (in the opinion of the
senior nursing and/or medical staff) had ‘severe brain damage’ (not otherwise specified).
Although this is clearly subject to varied interpretations, all organ donors (DBD and
DCD) will come from within this group of patients.
b) Patients ‘possibly brain dead’ are a subset of the patients “ventilated with severe
brain damage” who, “just prior to death, had fixed pupils, and no other evidence of brain
stem function (e.g. responsiveness, tracheal/cough reflex, corneal reflex or spontaneous
breathing). This subset will include an unknown number of patients whose CNS
examination is confounded by the presence of sedative or other medication, and it does
not require a formal examination of brain stem function, only “no other evidence of brain
stem function” of a type which can be expected to be easily observable without
complete examination.
c) Patients ‘tested for brain death’ are those who had either one or two clinical
examinations. Some patients ‘tested for brain death’ according to this definition, will
have had a single test, and then a discussion of organ donation at which donation was
declined, and a second test might not have been performed. Accordingly, since brain
death is only confirmed when both sets of tests have been completed, such patients are
not recorded in the database as having been brain dead.
d) “Formal discussion of organ donation” is a meeting at which organ donation is
formally discussed by the patients family and a doctor (usually a specialist working in
ICU) and (almost always) the ICU nurse looking after the patient. These discussions
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take place in circumstances when organ donation is a real option in the near future. At
these meetings the family are given whatever information they require and an
opportunity to have any questions answered about donation and supported in their
decision-making – in a process of informed consent. Such meetings are distinguished in
the database from “the possibility of organ donation being mentioned or raised” by either
the family or a health professional. “Mentions of donation” do not constitute a “formal
discussion of organ donation”.
e) Referrals to ODNZ include all patients who are referred to ODNZ because the health
professional wants advice or assistance about possible donation. These data are kept
by the donor coordinators of ODNZ and are separate from the ICU death audit data.
Some of these patients might not be found in the ICU death audit database (e.g. if they
did not die in the ICU but died later in hospital after transfer to a ward). All actual donors
are (at some stage) “referred to ODNZ”, as are most patients about whom a formal
discussion of donation occurs (but not all of them as some clinicians may conduct such
formal discussions and not contact ODNZ if the family decline organ donation).
8)
In 2012 the audit was expanded in scope by adding five “audit filters” which can be
triggered at the time of data entry if certain conditions are met. Four of these filters were
designed to help identify (and provide an explanation for) situations where a potential
donor might have been “missed” or where donation might have been possible if clinical
practice was different.
These four filters detect:
a) Missed potential DBD donors
b) Missed potential DCD donors
c) Patients possibly brain dead but not tested for brain death
d) Patients who died with severe brain damage but were neither brain dead, nor had an
artificial airway removed prior to death.
The fifth filter (tested for brain death and found not to be brain dead) identifies situations
where brain death testing may have been undertaken prematurely. There are no
particular implications for organ donation per se of triggering this filter, but it is ODNZ
view that this should be a rare event and that each occasion when the filter is triggered
should be reviewed as it might have implications for education and clinical practice.
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