specifically, it is a good primer for understanding why it is as important
to study and report death as it is to study diseases prior to death.
As noted by Dr. Jason elsewhere, deaths in CFS patients tend to occur two
decades earlier than is normal for the general population. Deaths from
virally related cancers are very prominent as is suicide (which may be
correlated with both the severity of the disease and/or the amount of
stigmatization patients routinely face).
Dr. Andrew Lloyd and the psychiatrists from the Kings College Institute of
Psychiatry automatically exclude CFS patients who have cancer. It doesn't
mean that if you have cancer that you no longer have CFS, it is simply one
way of winnowing out patients so that the population studied fits the
researcher's hypothesis. The argument being that the cancer is causing the
symptoms not CFS therefore the patient does not have CFS. It also allows the
argument to be made that CFS can be triggered by acute infection, but that
patients rapidly recover and somehow continue to think they are sick. That
this defies logic is not addressed.
This line of thought may also allow researchers with this viewpoint to
ignore other research that shows the continuing reactivation of viruses in
CFS may perpetuate the disease in patients. The insistence that patients
cannot be diagnosed with CFS until they have signs and symptoms for at least
six months also means that viral damage to organs such as the brain and
heart may be irreversible by the time patients are diagnosed. Nor does this
specific view point take into account which appeared first: the CFS or the
cancer or allow for co-morbidity.
The protocol for acknowledging that diseases may not directly result in
death, but are closely associated with diseases that do cause death in a
specific population is already in place. All doctors have to do is use it
properly. As in the example below, HIV doesn't cause death in AIDS, but
other diseases and infections may be a consequence of AIDS or HIV. This can
also be applied to CFS. *
*Official Cause of Death *
A question recently hit my inbox about what the official cause of death
would be listed as on a death certificate of a person who died of cancer. As
I don't deal much with that end (pun not intended) of the health care
spectrum, I did a bit of digging and found out that writing the "cause of
death" statement is surprisingly complex and yet also a thing of simple
beauty. Ok, so I'm a bit morbid.
A typical cause of death statement might read:
*Acute Myocardial Infarct *
Now, if you aren't an MD or a nurse, that might look like a load of
gibberish, but really it just says "heart attack". Simple, right? er... not
quite as simple as that. Actual cause of death statements are written in two
parts. The purpose of these statements is to allow tracking bodies to
develop statistics on diseases and processes that kill people, *and the
things that put us at greater risk for these conditions*. So if a coroner or
MD writing a death certificate has more information (ie from medical history
or an autopsy), they are going to fill this section in with as much data as
The purpose of part 1 is to determine the series of medical events that lead
up to the death, in reverse order, starting from the most recent condition
and working backwards to the oldest relevant condition that lead directly to
the death. So that very basic heart attack up there would become something
more like heart attack due to hardening of the arteries that feed the heart,
or in medical jargon:
*Acute myocardial infarct*
due to or as a consequence of *Athrosclerotic coronary artery disease*
As another example, if you had someone die of a pneumonia because they had
AIDS, their cause of death statement would look like:
due to or as a consequence of *Acquired Immune Difficiency Syndrome*
due to or as a consequence of *Human Immunodeficiency Virus infection*
If there isn't a lot of data on what lead up to the death, or if the person
was terminally ill from a known disease but there isn't a way to determine
what complication of that terminal disease exactly killed the patient, you
can sort of guess or just leave it off. As below:
*Acute myocardial Infarct*
Due to or as a consequence of *Probable Atherosclerotic coronary artery
*Adenocarcinoma of the prostate*
Part II is to list risk factors that lead to the sequence of events that
lead to the death. These can include other diagnoses, like high blood
pressure (hypertension) or diabetes (diabetes mellitus type I or type II),
or behaviors, like alcohol abuse, IV drug abuse, etc..
*Do's and Don'ts*
*Don't report signs or symptoms as the cause of death*
So a person cannot be said to have died of a cough, fever, or elevated blood
alcohol level. They can die of pneumonia (that caused the cough), or a
specific infection (that caused the fever), or alcohol toxicity (with the
high blood alcohol level would diagnose, but the blood alcohol level itself
is a test, not a diagnosis).
*Don't report mechanistic causes of death*
Mechanistic causes of death are the physical process that stopped or failed
due to disease or trauma, rather than the disease or trauma itself.
As in cardiac arrest caused by a heart attack, or respiratory arrest caused
*Do be specific and exact*
Don't oversimplify or under-report.
For instance, a doctor wouldn't write that high blood pressure killed
anybody. High blood pressure may have lead to stroke that killed someone, or
it could have lead to hardening of the arteries and a heart attack.
It's better to include too much information rather than too little.
*Why is cause of death important?*
Cause of death statements also allow us to track which diseases and problems
are killing us, and thereby allow us to work harder on cures, treatments,
and solutions to those same diseases and problems. Keeping mortality and
morbidity statistics is one of the best ways to start tracking the impact of
disease and death. (This is one of the CDC's jobs.)
Of course, the cost of disease and death can't just be measured in death.
Quality of life, healthcare costs, the costs to survivors, and other factors
must be weighed as well.