Mortality audit
BHIVA Audit and Standards SubCommittee
Participating centres
Responses were received from 133 clinical centres:
 80% outside the NHS London region, 19% in the
London region, 1% unstated.
 19% serving 1-50 HIV patients, 23% 51-100, 20%
101-200, 21% 201-500, 17% more than 500 patients.
 40 centres reported no deaths among their adult
HIV patients in the preceding year, including 52%
of those serving 100 or fewer patients.
Information on deaths
Respondents were asked how they find out when
HIV patients under their care die in the
community (more than one answer was allowed):
 61% said via grapevine/WOM
 49% via routine follow-up
 41% via community HIV team
 13% formal network meetings
 21% other.
Information on deaths (cont)
When asked how they would find out if HIV
patients referred to tertiary/specialist services had
died:
 34% did not answer
 20% described active follow up
 26% described passive receipt of feedback
 3% gave answers suggesting they might not
always know
 Information was unclear for the remainder.
Reporting of deaths
76% of respondents said deaths of HIV
patients at their centres are routinely reported
to the Health Protection Agency
 2% said deaths were not routinely reported
 7% had experienced no deaths
 15% were unsure or did not answer.

Reviews of HIV deaths
Centre policies on reviewing deaths among adult
patients receiving HIV care:
 24% formally review all deaths
 11% review in specific circumstances
 20% review if clinicians have concerns
 39% no clear policy
 5% not sure or no answer.
Death review process
 22%
of centres involve hospital/community
MDT
 28% hospital MDT
 28% medical team only
 8% other
 14% no answer.
At 48% of centres at least some reviews involve
discussing the death at a meeting. Other methods
include reading case notes.
Death review content
Issues usually considered in reviews of HIV
deaths (more than one answer allowed):
 82% clinical care at the centre concerned
 59% clinical care elsewhere, if relevant
 59% social circumstanes
 55% pattern of attendance
 8% other.
Value of death reviews
5% of respondents rated as “very valuable,
have led to significant changes in policy or
practice”
 27% as “valuable, have led to modest
changes in policy or practice”
 31% “Useful for education only”
 2% “Not useful”
 35% not sure or no answer.

Impact and lessons learnt from death
reviews
Consultant-led decisions to test for HIV in
unconscious patients
 Stopped using D4T/ddI backbone
 Refer complex cases to regional centre early
in illness
 Check CD4 for new patients via pathology
computer link within 2 days instead of
waiting for paper results, and act if <200

Impact and lessons learnt from death
reviews, continued
Need for multi-disciplinary involvement at all
stages of care – established social worker post
for black/ethnic minority patients
 Influenced prescribing policy
 HIV team alerted each time a patient is
admitted (for reasons other than HIV)
 Previous 3 deaths in prisoners with
previously undiagnosed HIV. Agreed with
physicians to refer inpatients to large centre.

Impact and lessons learnt from death
reviews, continued
Greater awareness of causes of death
 Improving communication between parties
and setting up a care pathway
 Add antifungal agents in PCP at day 7 unless
much improved. Pericardial effusion - drain
always when necessary and assume it's TB.
Start TB treatment early in ill patients & try to
prevent stroke etc
 Review of diagnostic procedure.

Impact and lessons learnt from death
reviews, continued
Encourages involvement of primary care in
management of non-HIV-related health problems
 Alerted GPs to be more vigilant about atypical, and
usually late, presentation
 Decision to refer complex cases to regional centre
early
 Timely discharge summaries. Better liaison between
inpatient and outpatient HIV services
 Improved the procedures of shared care.

Impact and lessons learnt from death
reviews, continued
Improved readiness to use empirical TB therapy
 Hospital consultants & other medical colleagues
more aware about when to request HIV test
 Helped [?TB] teams to liaise and communicate with
more involvement of the HIV team
 Planned improved communication with other
parties
 Better liaison between surgeons and medical teams.

Impact and lessons learnt from death
reviews, continued
Managing complex cases in the community increase awareness amongst primary care,
district nursing and palliative care teams
 Increased awareness of lactic acidosis, its risk
factors and need to collect blood in right
bottle
 Clinical and management lessons.

Impact and lessons learnt from
participating in this audit
Centre X:
 “I have found this a very educational exercise on
many levels.
 “… the sicker patients… have been in [referral
centre] at the time of their death…
 “… patients who are on the wards at [our own
centre] are under the care of the medics and
although we think we know about most of them this
is not always the case.
 [regarding the cases submitted] “…This has
immediately revealed huge data gaps and a lack of
communication between the various centres”.
Impact and lessons learnt from
participating in this audit, cont.
Centre Y:
 “… considerable disorder… many parts of
the clinical record were effectively
irretrievable…
 “… disregard for the importance of medical
records of the relatively recently deceased…
 “… a matter I will take up with our Medical
Director”.
Case note review
89 centres submitted case note review data for 397
deaths among adults with HIV:
 10 died outside the audit period of October
2004-September 2005 and were excluded
from analysis.
 The date of death was missing for a further 8.
These were included in the analysis.
Thus 387 deaths were analysed.
Patient demographics
Not stated 2%
Not stated 4%
Other 5%
Black-Caribbean 2%
Female 24%
Black-African 33%
Male 74%
White 57%
Age and place of death
Not stated 1%
Not stated 4%
<30 7%
Outside UK 2%
>50 27%
UK community 22%
30-50 65%
UK hospital 72%
Injection of non-prescribed drugs
309 (80%) of patients had no history of
injecting drug use
 33 (9%) had such a history but stopped prior
to their final illness
 18 (5%) continued injecting drug use until
onset of final illness.
 27 (7%) not known.

CD4 and VL in last six months of life
0-50
51-100
101-200
201-350
>350
Not available
0%
10%
20%
30%
40%
CD4 in cells/ml
>100,000
10,0011001-10,000
401-1000
51-400
0-50
Not available
0%
10%
20%
30%
40%
VL in copies/ml
Immediate cause of death
Bacterial sepsis
PCP
TB
Other OI
Lymphoma
KS
Dementia
Other malignancy
Multiorgan end-stage HIV
CVD
Renal
Other disease probably related to HIV
Chronic liver disease due to co-infection/alcohol
Suicide
Accident/injury
Overdose
Other, not related to HIV
Not known
0%
Top bars: reclassified during audit
Bottom bars: as initially reported
2%
4%
6%
8%
10%
12%
14%
Percentage of patients
Scenario leading to death
Death not directly related to HIV
Diagnosed too late for effective treatment
Under care but had untreatable complication
Treatment ineffective due to poor adherence
Chose not to receive treatment
Known HIV, not under regular care, re-presented too late
MDR HIV, run out of options
Successfully treated but suffered catastrophic event
Unable to take treatment - toxicity/intolerance
Died in community without seeking care
Treatment delayed/not provided because ineligible for NHS
None of above
NK/not stated
0%
Top bars: reclassified during audit
Bottom bars: as initially reported
10%
20%
30%
Percentage of deaths
40%
Deaths not directly related to HIV
123 (32%) of deaths were considered not directly HIVrelated. These comprised:
 30 (7.8% of all deaths) malignancies
 22 (5.7%) liver disease
 17 (4.4%) CVD
 7 (1.8%) suicide
 7 (1.8%) sepsis
 6 (1.6%) accident/injury, including one homicide
 4 (1.0%) overdose
 1 (0.3%) renal disease
 29 (7.5%) other or not stated.
Malignancy deaths were as follows:
29 lymphoma*
6 liver (of which 2 reported
as liver disease rather than
malignancy)
6 lung or bronchus
3 anal*
2 adenocarcinoma
2 kidney
* Considered directly related to HIV
** One considered directly related to HIV.
2 oesophagus
2 penis
2 prostate
1 each bladder, bowel,
breast, cervix*, Merkel cell,
multiple myeloma, pancreas
5 not known or not
stated**
Cardiovascular disease
CVD was the immediate cause of death for 25
(6.5%) patients. This was not all IHD:
 2 HIV-related pulmonary hypertension
 1 sub-arachnoid haemorrhage in alcoholic
patient with cardiomyopathy
 3 other cardiomyopathy
 1 viral myocarditis.
17 of the 25 CVD deaths were classified by the
reporting centre as not related to HIV.
Impact of late diagnosis of HIV
88 (23%) deaths were reported as due to HIV
diagnosis too late for effective treatment
 5 further deaths occurring within 3 months of
diagnosis were reclassified as due to late diagnosis,
giving a total of 93 (24% of all deaths, 35% of HIVrelated deaths)
This is a minimum as some deaths attributed to
untreatable complications of HIV involved conditions
which early treatment could have prevented. Also, there
may be under-ascertainment of deaths occurring without
involvement of HIV specialist services.

Late-diagnosed patient characteristics
Among patients whose deaths attributed to late
diagnosis of HIV:
 10.8% were aged under 30 compared with
5.8% dying in other scenarios
 31.2% were white compared with 65.0%.
Causes of death related to late diagnosis
Causes of deaths attributed directly to late diagnosis of
HIV were:
28 PCP
16 OI
9 TB
8 lymphoma
8 sepsis
7 multi-organ HIV
3 KS
3 CVD
2 renal
1 malignancy
6 other or multiple HIV
related
2 not known
Clinician delay in diagnosis
In 16 cases, the narrative suggested possible
clinician delay in diagnosing HIV after the patient
had presented with symptomatic illness:
 8 (50%) of these patients were over 50 at
death (7 of whom were white), compared
with 96 (26%) of other deaths
 Co-morbidity may have confused the picture
in at least two cases (established IHD,
previous lung cancer).
HIV testing in the ill patient
Two cases of clinician delay in diagnosis raise
questions about HIV test procedures for ill inpatients:
 Case 1: Admitted with weight loss and
diarrhoea. Diagnosed HIV+ by GUM health
advisor while on general medical ward, after
which care transferred to ID team.
 It is unclear why the medical team did not test
for HIV without requiring involvement of
GUM health advisor.
HIV testing in the ill patient, cont
 Case
2: Presented with PUO 3/52 before GU
involved. Xray showed features of PCP
months before admission. Case was formally
reviewed at grand round which concluded
that “sexual history taking should be
mandatory” as part of PUO investigation.
 It is unclear why sexual history taking was
identified as the priority, rather than HIV
testing.
Starting HAART
Six deaths resulted from new or worsening disease
soon after starting HAART, including three due to
cryptococcal meningitis.
These deaths may have included cases of IRIS.
Adverse reactions to therapy
Five deaths were reported as definite or probable
adverse reactions to HIV-related therapy:
 3 lactic acidosis
 1 fulminant liver failure attributed to isoniazid
 1 pneumonia possibly associated with nonHodgkins lymphoma chemotherapy-related
bone marrow suppression.
One death was reported as an adverse reaction to
non-HIV therapy – osteoporosis due to steroids
for polymyositis, leading to tibia fracture and then
bronchopneumonia/sepsis.
Adverse reactions, cont.
Reported “possible” adverse reactions were more vague,
but included:
 Patients who deteriorated after starting HAART as
reported above
 3 CVD/MI - one reported as heavy smoker, TC 5.4
TG 3.5, no family history
 Cardiac arrest possibly secondary to hyperkalaemia
in lymphoma patient
 Liver failure secondary to NASH, “multifactorial
aetiology including NRTIs and alcohol”
 Possible bowel perforation related to KS or steroid
therapy for PCP.
Catastrophic events
Seven deaths were classified as catastrophic events
in patients on treatment:
 3 lactic acidosis + 1fulminant liver failure
(from previous adverse events slide)
 1 MI - strong family history not recognised
because adopted
 1 right temporal lobe infarction secondary to
VZV vasculitis
 1 pulmonary embolus.
Patient factors
Patient choice not to receive treatment accounted for 18
deaths. At least 3 had previously taken ART.
26 deaths were directly attributed to treatment being
ineffective through poor adherence.
A history of poor adherence was noted in five other cases
– 3 where death was attributed to running out of
treatment options for MDR HIV and 2 attributed to
untreatable complications. Poor attendance was noted in
2 further untreatable complications cases.
Deaths due to poor adherence
Causes of deaths attributed directly to treatment being
ineffective because of poor adherence were:
12 sepsis
2 PCP
2 multi-organ HIV
1 KS
1 systemic leishmaniasis
1 PML
1 dementia
1 pulmonary hypertension
1 disseminated MAI
1 presumptive MTB
1 cerebral toxoplasmosis +
nosocomial bronchopneumonia
1 died with severe muscle wasting
/ diarrhoea
1 “advanced HIV disease”
Patient factors, cont.
13 patients with a previous positive HIV test had
not been under regular care and re-presented too
late for effective treatment (including one who had
not returned to receive the test result).
4 patients who were diagnosed late with HIV were
reported to have previously refused testing.
UK residency and NHS entitlement
12 patients were known to have arrived in the UK
within six months of death:
 9 died as a result of late diagnosis of HIV
 One death was not directly related to HIV
(hepatocellular carcinoma, hepatitis B/C coinfection).
No deaths were reported as due to treatment being
delayed or denied because of ineligibility for NHS
care.
Other possibly remediable factors
26 cases suggested other possibly remediable factors:
 Various communication and shared care issues
 Delay in critical care admission/incomplete medical
review on transfer
 Need for pre-HAART CRAG testing for Africans
with low CD4
 Awareness of lactic acidosis and collecting blood in
the right bottle
 Earlier consideration of CMV treatment
Other possibly remediable factors, cont.
 Need
for early oncology input in KS
 More intensive therapy for Burkitt’s
lymphoma
 Greater support for patient in denial re HIV
status
 Missed histology report
 Importance of encouraging people to start
treatment when indicated
 More aggressive management of
osteoporosis.
Post mortem and review
 Post
mortems were known to have been done
in 57 (15%) cases.
 Of these, 41 were coronial, 11 consented and
information was missing for 5.
 Refusal of consent was cited as a reason for
not performing a PM in 22 cases.
 Lack of access to pathology was cited in 13
cases from 7 centres.
Post mortem and review, cont.
 104
(27%) deaths had been reviewed at the
reporting centre, and review was planned for
34 (9%).
 211 (55%) deaths had not been reviewed.
 Information was lacking for 38 (10%).
Certification of deaths due to HIV
According to the centre questionnaire:
 60% of respondents always write HIV on the
certificate and/or tick the box to indicate
more information available
 1% sometimes neither write HIV nor tick the
box
 35% have not certified HIV deaths
 5% were not sure or did not answer.
Death certification, cont.
 However,
in the case note review, HIV was not
written on the certificate and the box was not
ticked in 39 (10%) cases.
 Only 12 of these 39 deaths were reported as
not directly related to HIV (a further 4 were
re-classified as such during the audit)
 Information about the certificate was lacking
in 195 (50%) cases.
Conclusions
Late diagnosis and causes not directly related to
HIV account for the majority of deaths in adults
with HIV.
There is some evidence of clinician delay in
diagnosing HIV.
Deaths due to adverse reactions to HIV therapy
are reassuringly rare.
Conclusions, cont.
Specific causes of death are predominantly:
 “Classical AIDS” including PCP, sepsis,
lymphoma and TB
 Malignancies
 Liver disease due to hepatitis B/C coinfection and/or alcohol
 Cardiovascular disease.
Conclusions, cont.
This study has identified some specific issues, including:
 Mechanisms for informing centres when patients
have died in the community or at tertiary referral
centres
 Importance of good communication and prompt,
effective referral pathways
 Value of death reviews
 Awareness of lactic acidosis
 Need for improvement in death certification.
Conclusions, cont.
For some centres, data gathering for this study has
been an instructive exercise in itself, and has
identified issues of communication and recordkeeping.
Recommendations
 BHIVA
requests its members to discuss these
findings at local grand rounds, to
communicate the impact of late HIV
diagnosis to non-HIV clinicians and jointly
consider how to facilitate rapid diagnosis and
transfer of patients to specialised HIV care.
 BHIVA asks EAGA and the Department of
Health to consider how to promote more
routine HIV testing in generic services as well
as specialist HIV/GU/sexual health settings.