Altman, Lawrence. "Getting It Right on the Facts of Death," New York Times, 22 December

 

Altman, Lawrence. "Getting It Right on the Facts of Death," New York Times, 22 December
1998, p. F7.

The final fact of life is that when you die, a doctor is required to fill out your death certificate,
specifying the cause of death.

Assigning a cause is more than an exercise in morbid curiosity. The certificate has important
legal and social purposes. For families of the deceased, the certificates can affect health and
finances. For policy makers, the documents provide information to track national trends in
diseases and form a basis for setting spending priorities. For researchers, the information is
crucial to scientific studies.

The importance of death certificates ha grown in recent years as thee autopsy rate nas plummeted
to about 10 percent from about 50 percent in the 1960s. Without autopsies, death certificates
become official declarations of why people have died. Still, death certificate information is often
flawed, and that misinformation can affect policy.

"Doctors don't realize that millions of dollars are actually allocated on the basis of that little
statement that they put on the death certificate," Dr. Harry M. Rosenberg, a senior statistician at
the National Center for Health Statistics said in an interview.

New evidence of flawed death certificate information comes from researchers at the federally
financed Framingham Heart Study in Massachusetts. The study, begun in 1948 and involving
some 10,000 people, suggests that doctors overstate coronary artery disease as a cause of death
on death certificates, particularly among the elderly.

Apparently, coronary artery disease is the default diagnosis for the death certificate when doctors
are not sure of the cause of death. The situation, however, is complicated: Many cases are so
medically complex that assigning a single cause, particularly in older people with multiple
ailments, can be virtually impossible, but doctors still must cite a primary cause and can add
secondary causes. In such cases, doctors may differ about the main cause.

Despite the importance of the death certificate, the message about the frequent flaws is unpopular
in medical circles because it implicitly criticizes medical education and practice.

Studies in the United States and elsewhere have documented varying degrees of inaccuracies in
death certificate information, with some showing an error rate of 30 to 40 percent. Critics say that
improving the accuracy will permit more reliable detection of trends in deaths from various
diseases. Rare conditions, child abuse and suicides are among the conditions that are believed to
be under-reported.

When autopsies are performed, amendments to the death certificate are allowed. But many times
the information is not forwarded, or the certificate is not altered.

Doctors have been required to sign death certificates in all states since at least 1933. Yet formal
instruction on how to assign a cause of death is spotty. Instead, the learning generally comes
informally during residency training when doctors may ask colleagues "How do I fill this thing
out?" Answering the question: other doctors, nurses, medical records workers, and, occasionally,
even funeral directors.

In the Dec. 15 issue of the Annals of Internal Medicine, the Framingham authors add to earlier
pleas that have urged improved training for doctors in how to complete death certificates. The
National Center for Health Statistics has distributed instructional laminated plastic cards and
audio- and videotapes to hospitals through state health departments. Yet examinations for doctors
rarely include questions about death certificate procedures.

The death certificate aims to provide the best possible explanation of why a person has died. In
signing a certificate, a doctor is supposed to list a specific cause of death. Breast cancer,
pneumonia and diabetes are examples. The designation of "natural causes," which some doctors
have used, is neither specific nor meaningful. Other terms sometimes used, like cardiac arrest or
respiratory failure, are mechanisms of death, not causes, since everyone's heart and lungs
eventually stop at death from whatever the underlying ailment.

The scientific imperative to provide accurate information is growing daily. As more is learned
about the hereditary nature of many diseases, survivors and unborn generations may someday
want to look up a family member's cause of death.

Beyond that are more immediate and practical issues. Death certificates can help settle estates
and affect insurance claims. If an autopsy showed that someone died of a heart attack that led to a
car accident, the beneficiaries might not be eligible to collect on double indemnity clauses.
Occasionally, misinformation on death certificates has led to malpractice suits. In a recently
reported case, a heart attack was listed as the cause of death of a 48-year-old male heavy smoker.
His widow sued his doctors, charging that they had failed to diagnose and treat the heart attack.
But an autopsy showed no evidence of a heart attack and found that death probably resulted from
inflammation of the heart.

Family pressures, even hospital billing practices, can influence what is listed as a cause of death.
In trying to comfort survivors of a suicide victim, some doctors put down another cause of death,
justifying comments in medical journals that some certificates "are pure fabrication."

In part to encourage doctors to provide more accurate death certificates, New York and some
other states have restricted public access.

Because heart disease is the most common cause of death in the United States, Dr. Daniel Levy's
team at the Framingham Heart Study resolved to determine the accuracy of death certificates for
heart disease. The Framingham study has become arguably the most influential heart disease
research project, helping to shape the understanding and treatment of heart disease throughout the
world.

Dr. Levy's team compared the cause of death listed by a patient's doctor on the death certificate
with the one determined by a panel of three experts. The panel routinely reviews each death in
the Framingham study after examining the patient's medical records and interviewing the next of
kin. The panel does not use the death certificate in making its determination.

However, the Framingham authors agreed that expert panels are not infallible. Also, the treating
physician may have information that is not in medical records.

Dr. Levy's report involved 2,683 participants in the Framingham Heart Study who died from
1948 to 1988.

The death certificate cited coronary disease as the cause of death for 942, or 35 percent, of the
deceased, compared to 758, or 28.3 percent, for the expert panelists. Further statistical analysis
showed that certificates attributed 24.3 percent more deaths to coronary artery disease in all age
groups. The expert panel agreed with only 635, or 67 percent, of the coronary causes of death
listed on the death certificate.

In the study, the tendency to assign more deaths to coronary heart disease increased with age. In
those 85 and older, death certificates listed coronary heart disease twice as often as the panel did.

The Framingham researchers cautioned against extrapolating findings from one community to a
wider area. And even if the inaccuracies in the Framingham study were confirmed on a national
scale, heart disease would not drop to second place behind cancer, Dr. Levy said in an interview.
The findings have important implications for research determining risk factors for various
diseases.

It would make it difficult, if not imposslible," Dr. Levy said, "to identify risk factors for a disease
when the level of misclassification on death certificates is similar to what we observed for
coronary disease."

Dr. Rosenberg, the National Center for Health Statistics official, said use of the Internet would
eventually make death certificate information more reliable and retrieval of data speedier.

Doctors can now consult the Web site (www.cdc.gov/nchswww/about/dvs/moredata.htm) for
help in completing a death certificate. Salso, an electronic filing system is being tested in Iowa,
New Hampshire and New York. Doctors who connect with the New York health department's
Web site will see an image of the death certificate. "Prompts, edits and tutorials will guide the
user," Dr. Rosenberg said.

"It's out best hope," he added, "but we're not there yet.