Mortality audit

1. Mortality audit BHIVA Audit and Standards Sub-Committee

2. 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.

3. 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.

4. 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.

5. 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.

6. 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.

7. 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.

8. 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.

9. 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.

10. 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

11. 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.

12. 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.

13. 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.

14. 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.

15. 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.

16. 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”.

17. 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”.

18. 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.

19. Patient demographics Not stated 2% Not stated 4% Other 5% White 57% Female 24% Black-Caribbean 2% Black-African 33% Male 74%

20. Age and place of death Not stated 4% Not stated 1% <30 7% Outside UK 2% >50 27% UK community 22% 30-50 65% UK hospital 72%

21. 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.

22. CD4 and VL in last six months of life CD4 in cells/ml VL in copies/ml

23. Immediate cause of death Top bars: reclassified during audit Bottom bars: as initially reported

24. Scenario leading to death Top bars: reclassified during audit Bottom bars: as initially reported

25. Deaths not directly related to HIV 123 (32%) of deaths were considered not directly HIV-related. 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.

26. 29 lymphoma* 6 liver (of which 2 reported as liver disease rather than malignancy) 6 lung or bronchus 3 anal* 2 adenocarcinoma 2 kidney 2 oesophagus 2 penis 2 prostate 1 each bladder, bowel, breast, cervix*, Merkel cell, multiple myeloma, pancreas 5 not known or not stated** Malignancy deaths were as follows: * Considered directly related to HIV ** One considered directly related to HIV.

27. 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.

28. 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 HIV-related 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.

29. 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%.

30. 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 Causes of death related to late diagnosis Causes of deaths attributed directly to late diagnosis of HIV were:

31. 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).

32. HIV testing in the ill patient Two cases of clinician delay in diagnosis raise questions about HIV test procedures for ill in-patients: • 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.

33. 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.

34. 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.

35. 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 non-Hodgkins 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.

36. 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.

37. 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.

38. 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.

39. 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” Deaths due to poor adherence Causes of deaths attributed directly to treatment being ineffective because of poor adherence were:

40. 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.

41. 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 co-infection). No deaths were reported as due to treatment being delayed or denied because of ineligibility for NHS care.

42. 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

43. 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.

44. 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.

45. 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%).

46. 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.

47. 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.

48. 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.

49. Conclusions, cont. Specific causes of death are predominantly: • “Classical AIDS” including PCP, sepsis, lymphoma and TB • Malignancies • Liver disease due to hepatitis B/C co-infection and/or alcohol • Cardiovascular disease.

50. 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.