1. Dealing with medical uncertainty
MEDICAL CERTIFICATION OF Cause of death,
TONGA
November, 2018

2. Uncertainty is a fact of life (and death) as a doctor
The medical certificate records the facts surrounding the cause of death – to the best of your knowledge
There will always be an element of uncertainty in this diagnosis
In most cases there is some information available about the cause of death
Ill-defined or unknown (or variants of this – old age, sudden death, DOA) should only be used where it is not possible to make a reasonable or “most likely” diagnosis
Similar to a principal diagnosis (vs differential diagnosis) – except that you only get to do it once~
Dealing with medical uncertainty: As we have heard over the last couple of days, the medical certificate cause of death records the facts surrounding the cause of death to the best of your knowledge. So we might come across a person who hasn’t seen a doctor in many years and so has little medical history available and no obvious cause of death, or we might simply have to certify a death of a person whose cause of death is unclear, despite appropriate history and investigation and testing. So, to the best of your knowledge might look very different for different deaths. In any case, there will always be, or very often an element of uncertainty when certifying a death; however, in most cases, there will be some information available about the person, their history and/or the circumstances of their death that may give us clues as to how the person died. Ill-defined or unknown terms, such as old age, natural causes, sudden death etc, should only be used when it is not possible to make a reasonable deduction as to the cause of death with the information available.
Certifying a death is similar to principal diagnosis. Where principal diagnosis is defined as the condition after study which is chiefly responsible for occasioning the patient’s episode of care in hospital. Put simply, the underlying reason the person presented to hospital. When certifying a death, we want to think about the underlying cause of death; that is, the disease or injury which initiated the train of morbid events leading directly to death; or the accident or violence which produced the injuries. In any case, we are always thinking about the train of events, and looking for the starting condition which caused the train of events. However, a big difference between principal diagnosis and underlying cause, is that you only get one chance to certify a death.

3. Ill-defined cases
Leaving a cause of death as an ill-defined cause means that it is not counted in the statistics – and therefore may have policy, resource and funding implications
For example – if we do not record probable cancer related deaths because we have not done a biopsy, cancer does not appear to be as big a problem in the country as it may be.
What are the implications of ill-defined causes? If we leave a cause of death as ill-defined (that is, natural causes, undetermined, old age), that death will not be counted in the statistics for major causes of death and therefore does not factor into decision making around policy. For example, if we had to certify the death of a person who we strongly suspected had end-stage cancer, but no biopsy or definitive testing was conducted and the death was certified as “undetermined”, this death will not appear in our cancer statistics, despite the probable likelihood that the death occurred due to cancer. Therefore the statistics may represent undercounts in certain causes of death and the condition may not appear to be as big a problem as it actually is, which has implications for funding, resourcing and other policy issues.

4. Common Sources of Uncertainty
Complex medical histories/ multiple co-morbidities
Diagnostic tests were not available
Missing information/ not familiar with the case (i.e. DOA cases)
So how does uncertainty occur when certifying a death? I’ve briefly mentioned missing information and unfamiliarity as common sources of uncertainty, but even having too much information can cause confusion and doubt. It is becoming more and more common to see deaths of people with multiple comorbid conditions, usually with related risk factors. In these cases it may be difficult to deduce exactly which condition caused the morbid train of events leading to death and in fact, it may be a combination of multiple conditions.
Another source of uncertainty is the unavailability or lack of diagnostic testing. Cancer is most commonly affected by this issue and it is important to use your best clinical judgement in certifying the most probably cause of death, taking into account other sources of information, such as medical history, hospital records etc
Lastly, it may be common to come across deaths of a person who has little clinical history, or you are unfamiliar with the case and have no access to medical history or records.

5. COMPLEX medical History
Where a person has died with multiple co-morbidities it can be very difficult to determine exactly which of those causes directly led to the death occurring.
For example: A 65 YO M with the following conditions: prostate cancer, diabetes, ischemic heart disease, historical rheumatic heart disease, hypertension – dies of heart failure.
When determining what to put on the certificate - think about all the conditions and document these. Consider how these link together and what possible progressions may have occurred.
The heart failure may be caused by many of the conditions listed here.
Once you are clear which is the sequence that had the most direct effect in causing this death – document this sequence (from immediate cause working backwards) and record the other conditions in Part II
1: Heart Failure 1: Heart Failure
2: Ischaemic Heart Disease 2: Ischaemic Heart Disease
3: Rheumatic Heart Disease 3: Diabetes
Part II: Prostate cancer, Hypertension, Diabetes Part II: Prostate cancer, Hypertension, RHD
So what do we do when we have a complex medical history?
Where a person has died with multiple co-morbidities it can be very difficult to determine exactly which of those causes directly led to the death occurring.
For example: A 65 YO M with the following conditions: prostate cancer, diabetes, ischemic heart disease, historical rheumatic heart disease, hypertension – dies of heart failure. While we want to certify heart failure as the mechanism of death, heart failure is considered an ill-defined cause of death in that it is often caused by another, more chronic condition. For this reason, we don’t want heart failure to be certified as the underlying cause of death.
When we are deciding what to put on the certificate and as importantly, where to put conditions on the certificate, we should think about all the conditions and how these link together and all combinations of possible progressions.
In the example listed, heart failure can be caused by almost all conditions listed here so we need to think carefully about what sequence we want to put on the certificate.
When you have decided upon a sequence, you should document the sequence from the most direct effect (ie. The heart failure) working backwards to the condition which started the sequence of events leading to death. Any other conditions you believe are relevant to the death and have contributed in some way, record in Part 2.
In the example provided, there are multiple potential sequences, and you would use other information such as progression of each disease, management of disease etc, knowledge of major complaints prior to death to decide what the sequence should be.

6. DIAGNOSTIC TESTS WERE NOT AVAILABLE
You are requested to record your best CLINICAL judgement based on what you do have available
Use all the information you do have – other tests/ medical record etc
Cancer cases are the most common causes affected by this issue
Tumour/ mass – probable cancer without biopsy
It is OK to state “Probable” to indicate uncertainty in the diagnosis. This indicates to the coder that you were confident enough in the diagnosis that the case should be counted as such
AVOID: Suspected, Ruled out, Possible, and other such variants – in this case you expect the coder to decide and they will code it to ill-defined
Give as much specific information as you can.
As I’ve mentioned, you should use your best clinical judgement based on the information you have available. If you don’t have diagnostic or definitive testing available, use all other information available to you, such as medical records, blood tests, information from previous treating doctors. As I mentioned, cancer cases are the most common causes affected by this issue, so in these cases, if you have a degree of certainty it is okay to state probable to indicate there is a degree of uncertainty in the diagnosis, such as “probable lung cancer”, “probable prostate cancer”. BY stating probable you are indicating that while there is uncertainty, you have enough confidence in the diagnosis that the case should be counted in the statistics toward that cause.
While “probable” indicates a “most likely” scenario, try to avoid using terms such as “suspected”, “possible”, “ruled out” and other similar variants, as these terms indicate significant uncertainty and puts the burden of decision onto the coder; in these cases, the coder will code to ill-defined.

7. doa/ No prior knowledge of the case
Discuss the case with the treating doctor (if one is known)
Attempt to connect with a health facility that may have information on the patient
Make attempts to access medical history and review case history
Ask questions of the family to assist in understanding what happened
Consider using a verbal autopsy - a formal way to interview family and friends regarding potential causes of death
Consider an autopsy/ refer the case for formal investigation
Particularly for sudden, premature deaths where no further information is known
When you have either missing information or no prior knowledge of the case presented to you, there are multiple sources of information you can reference in an attempt to gain an understanding of the persons health at the time of death. If there is a known treating doctor, discuss the case with them, including medical history, current state of health at the time of death, when the patient was last seen, any major health issues present that may reasonably result in death etc. You can also try to connect with other health facilities that may have information on the patient and access medical records and review the case history.
Another option is to request information from the family of the deceased to assist in understanding the persons death, and you may even conduct a formal verbal autopsy, which is a formal interview to friends of family regarding potential causes of death
If the death is sudden and /or premature, and no information can assist in reasonably deducing a cause of death, then you may consider referring the death for an autopsy, or formal investigation if this is possible
Add extra slide on DOA- common in pacific- is there a health facility you can connect with that may have extra info on the patient

8. Policy and legislation
 be aware of legislation, hospital policy
how do these translate to your obligations as a certifying doctor?
talk to hospital director, hospital review committee if you are unclear of legislation and policy requirements
SAMOA BDM ACT 2002
47. (5) Every doctor required to provide a medical certificate under subsection (3) must -
(a) Carefully question every person who was present at the death and who recently was with the deceased before death; and
(b) Make such other inquires as in the opinion of the doctor are reasonable in the circumstances to determine the cause of the death.
When certifying a death you need to be aware of your own legislative requirements and hospital policies regarding the process and your obligations as a certifying doctor. If you are unclear as to the legislation, how it may apply to you or how to interpret it, talk to your hospital director or the hospital review committee for clarity.
Here is an example of legislation relating to certification from the Samoan BDM act (a) Carefully question every person who was present at the death and who recently was with the deceased before death; and (b) Make such other inquires as in the opinion of the doctor are reasonable in the circumstances to determine the cause of the death. This type of legislation helps to improve practices around investigation into specific causes of death where documentation may not be available or complete.

9. Components of the WHO verbal autopsy guidelines
Questionnaire for interview with family members and/or caregivers :
Neonates (<4 weeks)
Infant and children (4 weeks to 14 years)
Adults, 15 years and over
The WHO verbal autopsy allows for simple and inexpensive investigation into causes of death in places where no other routine system is in place and in areas where many people may not have much or any contact with the health system. It contains a standardised questionnaire used to elicit information of signs, symptoms, medical history and circumstances preceding death. There are three types of questionnaires: one for neonates (under 28 days); infants and children (4-14 weeks) and adults, 15 years and over .
With completion of the questionnaire, it is signed off by a trained medical professional and in most cases, it is run through specialised software which uses automated algorithms to interpret results and apply ICD-10 coding rules.
Application of ICD-10 to verbal autopsy interviews
Certification by medically trained personnel
Professionalised coding; use of automated algorithms

10. Using VA to Complement A medical diagnosis
Verbal autopsy tools were designed to assist in determining population level cause of death patterns in areas where doctors are not available to determine cause of death
They are reasonably accurate at the population level, but much less so at the individual level
However – the structured questionnaire can be used by doctors to ADD to their examination and assist in making a diagnosis.
Verbal autopsy is not designed to replace the medical opinion
In places where many deaths occurring away from health facilities may be less likely to be recorded in cause of death statistics. As a partial solution, the verbal autopsy can become a very useful source of information. VA can be used to obtain a reasonable estimation of the cause structure of mortality at the population level; however, it is worth noting that on the individual level, it is less accurate for attribution of cause of death information. However, at the individual level, the structure questionnaire can be very helpful in as an additional source of information and in combination with other sources of information, can aid in determining a diagnosis. It is not designed to replace the medical opinion of the medical professional.

11. Verbal autopsy questionnaires
Respondent should be primary caregiver (usually family member) who was with the deceased prior to death.
Short recall periods preferable (< 1 year).
Careful determinant of timing of the interview- consider appropriate mourning periods
Local adaptation of questionnaire usually needed.
Interviewer does not need to be medical doctor but should have some medical knowledge (e.g. community health worker) and training
Response-based sequencing
When administering a verbal autopsy, the respondent should be the primary caregiver who was with the deceased in the period leading to their death or a witness to the death or accident; however, it is not uncommon that the primary caregiver requires assistance from other household or family members in answering questions as accurately as possible. The interview should be carried out as soon as practically possible after the death; however, prescribed mourning periods should be taken into consideration when deciding the timing of the interview.
Local adaptation of the questionnaire is usually needed, where changes to the wording of existing variables for the purpose of enhancing local comprehension or ensuring cultural acceptability of questions should be undertaken. Users are permitted to add questions to the interview, but no questions should be removed, which can compromise the comparability of the instrument. In particular, adding new questions about diseases of interest may bias the results of the interview if a disproportionate amount of information about one condition is available in the cause of death assignment process. Local-specific questions that are added will not be used by the software in determining the cause of death. Any modification should be shared with WHO, as well as rationale for the modification which can help inform future revisions of the instrument.
Interviewers also should be trained on using the instrument and conducting the interviews. The interviewer should have good working knowledge of the local language and some medical knowledge and training; however ideally they should be a medical professional. It is recommended that interviewers carry out at least monthly interviews to retain their proficiency in administering the tool.

12. Verbal autopsy questionnaires
Common elements
Unique ID or reference number
Date, place, time of interview; identity of interviewee
Informed consent statement
Respondent characteristics
Time, place and date of death
Name, sex and age of deceased
Causes of death and events leading up to the death, according to the respondent
Here are some examples of information that is collected as part of the verbal autopsy. As has been mentioned several times in the last couple of days, demographics are as important as cause of death information in mortality statistics, as they allow us to identify and track specific disease trends in sub-populations and areas. Also, informed consent from the respondent ensures you are meeting your ethical obligations in administering the questionnaire.

13. Verbal autopsy questionnaires
Additional elements
History of previously known medical conditions (of the deceased or of the mother in the case of an infant death)
History of injury or accident
Treatment and health service use during the period of final illness
Data abstracted from death certificates, antenatal or maternal and child health clinic cards
Other medical records and relevant documentary evidence at the household level.
Other elements allow you to begin to ascertain a picture of the persons health prior to death and begin to form a picture around the circumstances of the death, such as was it natural or external? Was there a particular health complaint that was more prevalent prior to death? Or was the person being treated for something in particular prior to death?

14. Here is an example of the neonatal verbal autopsy questionnaire
Here is an example of the neonatal verbal autopsy questionnaire. As you can see the questionnaire contains items relating to behavioural patterns such as bottle-feeding behaviour, as well as clinical symptoms, such as convulsions and then if the answer to particular questions is a yes, subsequent questions will ask for further detail regarding that behaviour or symptom. Where the answer is no, the sequencing format allows you to skip questions as specified in the far right hand column.
16/02/2019
Carla AbouZahr

15. This is an example of an all ages questionnaire
This is an example of an all ages questionnaire. It is similar in that there are questions relating to behaviour and clinical symptoms and also follows question-sequencing based format.
16/02/2019
Carla AbouZahr

16. This is an example of where the respondent is asked to provide their account of the circumstances of the death and what they believed was the cause of death. Again, this is only to be used as additional information to multiple other sources of information to form the clinical opinion.
16/02/2019
Carla AbouZahr

17. RESOURCES
WHO 2016 Verbal Autopsy Instrument