My mother was diagnosed with Non-Hodgkins Lymphoma in August, 2004. 
She underwent a bone marrow test to see if the cancer had spread to
her marrow.  It hadn't, but after the test, she complained of extreme
pain where they had drawn the sample.  I later read persistent pain at
the test site was not normal and a sign of infection.  I'm not sure if
she only complained to my dad and me, or also to her doctor.  A week
after her first and only round of chemo, her neck tumours had visibly
shrunk to almost nothing, but she was not able to eat and, thinking
her too lethargic, her GP had her check into the hospital for
observation. After a night's sleep in a regular room, she had a kind
of seizure due to a massive infection with a hospital superbug,
resistent pseudomonas aeruginosa, and was taken to ICU.  The infection
started around her lower organs, where they had done the bone marrow
test, and she went into septic shock.  (For her chemo, they didn't
give her any kind of medicine to up her WBCs.  Her WBCs had gone down
to 0.)  They put her on a ton of sedatives, and other medicines, of
course.  I kept telling them she was extremely sensitive to medicine
and that in Illinois, her doctor had always given her tiny doses. 
They didn't listen to me.  After shutting down, her organs amazingly
started working again and she came out of a week long coma (I'm not
sure how much of it was because of the sedation), and things were
looking up, but she couldn't regain her strength enough for the
doctors to feel comfortable removing the ventilator.  One reason she
didn't get stronger was that each time she started getting stronger,
some doctor, who'd never seen her before, would say he needed to
perform some diagnostic test to see why she was so weak.  These tests
always wiped her out, and always came back negative. I was with her
all the time, while the doctors and nurses came and went, and I saw
this happening.  I really think if they had just let her alone for at
least one week, she would have recovered enough to at least leave the
ICU. Anyway, after 29 days, she was still on the ventilator, though
her breathing had been at times strong enough to go without it. She
was breathing strongly at the end.  Physically, they said she was
doing great -- her edema was gone, her jaundice gone.  But, she'd been
lying on that cot for 29 days. (Near the beginning, during a BP drop,
one night nurse had told me I should think about my mother and let her
die, but then when I asked her GP, he said that was nonsense, and my
mother did come back from the BP drop and her BP eventually
stabilized.  Then another doctor in passing in the lobby brusquely
told my dad and me we should consider end of life issues before he
said he had to go.  We'd only seen him once before.  Then the cancer
doctor said my mom was making a miraculous recovery.)  
Psychologically, I think she decided to die when she heard they were
moving her to the telemetry room for more tests.  She had a massive
brain hemmorhage the morning of the scheduled move and they told us we
should pull life support so we did, and she died.

The death certificate lists brain hemmorhage as primary cause of
death, and cancer as secondary cause of death.  No one talked to us
about this -- once she died, I never heard a word from the doctors as
to what happened.  I left messages, and no one called me back.  To me,
it's clear that the bacterial infection killed her -- it should at
least be listed as the secondary cause.

Sorry for going on so long, but my friend said one can petition to
have the certificate changed to reflect reality.  Does anyone here
know what that involves?  Who do I petition and what sort of process
is it?  I'm not going to sue anyone, but I've found that I can't let
this go.  I feel like I'm letting them get away with a lie. (If they
don't list pseudomonas aeruginosa as a cause, then how many other
cases do they mislabel and then what are their statistics worth?)

Thanks very much.

---

Request for Question Clarification by pafalafa-ga on 23 Aug 2005 07:53 PDT

Sorry to hear about the ordeal your mother and her loved ones went through.

Can you tell me in what state and county the death certificate was
issued?  This will help in researching your question.

Thank you.

pafalafa-ga

---

Clarification of Question by kellas-ga on 23 Aug 2005 08:17 PDT

It was in Los Angeles, California.  

Thank you.

---

Request for Question Clarification by crabcakes-ga on 23 Aug 2005 10:16 PDT

Hello Kellas,

  Does the death certificate list "underlying causes" of death?

---

Clarification of Question by kellas-ga on 23 Aug 2005 12:15 PDT

I'll have to ask my father, who has the certificate.  He's enroute
from China right now.  He told me that cancer was listed as the
secondary cause, and he agreed when I said that sepsis caused by the
infection should have been listed.  Based on his response, I assumed
it wasn't mentioned at all, but I haven't looked at the certificate
myself.  I should have before posting a question, I suppose, but oh
well.  I'll be able to  find out tomorrow.
Thanks.

Hello again, Kella,

   Your mother's case is one I have seen several times before. It
should not be difficult to get the death certificate changed, if the
doctor is willing to do so. If not, you have further recourses.

   I called Vital Records for Los Angeles County, at 213-240-8374, and
briefly relayed your story. The person I spoke with was surprised that
the sepsis was not mentioned at least as an underlying cause. The very
nice woman I spoke to (Whose name I did not get)said that you need to
start with your mother?s primary physician first. S/he is the one to
amend the death certificate. If the doctor refuses, your next step is
to call the pathologist who performed an autopsy, if one was
performed.

If no autopsy was performed, and the primary care physician will not
amend the certificate,  call the medical examiner?s office. I have
also posted other offices who deal with death certificates, further
down in the answer, who may be helpful. I could do no more, as the
office wanted your mother?s information, and that I could not supply.

County of Los Angeles-Department of Coroner Program
Office of Chief Medical Examiner-Coroner
1104 North Mission Road
Los Angeles, CA 90033-1578

 If you find no satisfaction there, the office of Vital Records told
me your next step is to find a lawyer who will help you get the
certificate changed. Sometimes a simple call from a lawyer to an
unwilling doctor will do the trick!


About Death Certificates:
=========================
On Page 17, of this CDC document on preparing death certificates, you
will read that infection (sepsis) may be too vague to post on a
certificate.
?The cause-of-death section is designed to elicit the opinion of the
medical certifier. Causes of death on the death certificate represent
a medical opinion that might vary among individual physicians. A
properly completed cause-of-death section provides an etiologic
explanation of the order, type, and association of events resulting in
death. The initial condition that starts the etiologic sequence is
specific if it does not leave any doubt as to why it developed. For
example, sepsis is not specific because a number of different
conditions may have resulted in sepsis, whereas human immunodeficiency
virus syndrome is specific.?
?When a number of conditions resulted in death, the physician should
choose the single sequence that, in his or her opinion, best describes
the process leading to death, and place any other pertinent conditions
in Part II. ??Multiple system failure?? could be included in Part II,
but the systems need to be specified to ensure that the information is
captured.?

However, on Page 39, you will notice that ?sepsis? and ?septic shock?
are listed as terms used on death certificates. This may help you in
at least getting the sepsis (infection) listed on the certificates as
to what started the chain of events.
http://www.cdc.gov/nchs/data/misc/hb_cod.pdf

On Pages 28 and 29, you will see a case history of a woman who died of
Pseudomona aeurginosa infection (sepsis), and which IS listed on the
death certificate.
http://www.cdc.gov/nchs/data/misc/hb_cod.pdf

From the CDC, here is a standard US death certificate. Notice that
there are spaces to enter the underlying cause of death, as well as
the actual cause of death.
?The cause-of-death section consists of two parts. Part I is for
reporting a chain of events leading directly to death, with the
immediate cause of death (the final disease, injury, or complication
directly causing death) on line a and the underlying cause of death
(the disease or injury that initiated the chain of events that led
directly and inevitably to death) on the lowest used line. Part II is
for reporting all other significant diseases, conditions, or injuries
that contributed to death but which did not result in the underlying
cause of death given in Part I. The cause-of-death information should
be YOUR best medical OPINION. A condition can be listed as ?probable?
even if it has not been definitively diagnosed.?
http://www.cdc.gov/nchs/data/dvs/DEATH11-03final-ACC.pdf


The National Association for Public Health Statistics and Information
Systems (NAPHSIS)
?The National Association for Public Health Statistics and Information
Systems (NAPHSIS) is a national association of state vital records and
public health statistics offices which is based in the Washington, DC
area. The association was formed in 1933 to provide a forum for the
study, discussion, and solution of problems related to these programs
in the respective members' health departments.?
http://www.naphsis.org/about/index.asp

According to NAPHSIS:
?The causal chain should begin with the cause that was closest to the
time of death and work backwards to the initiating condition which is
called the underlying cause of death. For example, the physician might
report a death for which staphylococcus pneumonia occurs closest to
the time of death; however the physician also reports that the
pneumonia is due to carcinoma metastatic to both lungs, which in turn, is due to
poorly differentiated adenocarcinoma, unknown primary site.?
http://www.naphsis.org/projects/index.asp?bid=409

The following statement came from a Vanderbilt University, in
Tennessee, but it should apply to California as well.:? Death
certificates are legal documents. Do not attempt to change a death
certificate, especially if there are questionable circumstances,
without notification and discussion with the medical examiner's
office. If a change is requested (for example, by the family), the
attending physician should be notified immediately?


Amending a death certificate:
=============================

You may get some help from Alan Oppenheim (916-324-1100) or Jessica
McCarroll (916-322-5179), who work for the automated vital statistics
system.
http://www.avss.ucsb.edu/tag/tag0601.htm

Michael Rodrian
State Registrar and Chief
Center for Health Statistics
mrodrian@dhs.ca.gov
http://www.drbecky.com/birthcert.html     

Here is the contact information for the death records section, of L.A.
County, CA. Branch addresses are also on  this site for in-person
visits.

Birth, Death and Marriage Records Section 
P.O. Box 53120 
Los Angeles, CA 90053-0120 

Certificate Information.....................(562) 462-2137
http://lavote.net/recorder/birth_death.htm

Request for certificates
http://lavote.net/recorder/infoSheet.htm



The county health officer may be able to assist you as well:

Jonathan Fielding, M.D.
313 North Figueroa Street
Los Angeles, CA 90012
Jfielding@dhs.co.la.ca.us
Office (213) 240-8117
FAX (213) 975-1273

Belinda Towns (Acting)
Medical Director, Public Health
313 N. Figueroa St., Room 806
Los Angeles, CA 90012
btowns@dhs.co.la.ca.us
Office (213) 250-8685
FAX (213) 481-9853
http://www.dhs.ca.gov/hisp/chs/OVR/LocalRegistrar/CountyReg2.htm#Los%20Angeles

Bone Marrow Biopsy
==================
  While complications from bone marrow biopsies do occur, they are
rare. A bone infection is called osteomyelitis. Hopsital acquired
infections are far more common in cancer patients, as the have such
lowered immunity. You  mentioned your mother?s white blood cell count
(WBC) had gone down to zero! This made her highly susceptible to
infections that lurk in the hospital, especially an opportunistic
organism as P. aeruginosa. I can?t say with certitude, but your mom?s
infection likely came from another source, and not the bone marrow
biopsy. You can see the procedure outlined on this page. (You may have
to sign up for free registration to view this page.)
http://www.emedicine.com/med/topic2971.htm

According to Textbook of Bacteriology, P. aeruginosa is an evil
attacker of cancer patients:
?It causes urinary tract infections, respiratory system infections,
dermatitis, soft tissue infections, bacteremia, bone and joint
infections, gastrointestinal infections and a variety of systemic
infections, particularly in patients with severe burns and in cancer
and AIDS patients who are immunosuppressed. Pseudomonas aeruginosa
infection is a serious problem in patients hospitalized with cancer,
cystic fibrosis, and burns. The case fatality rate in these patients
is 50 percent.?
http://textbookofbacteriology.net/pseudomonas.html


Osteomyelitis:
Symptoms:
·	A general feeling of illness (malaise).
·	Fever, chills, and sweating.
·	Deep bone pain.
·	Pain that is worse when pressing on the infected area or when standing.
·	Swollen and red skin (sometimes) over the affected bone.
·	Drainage of pus from the wound.
?Antibiotic treatment is necessary to prevent destruction of bone
tissue. If the osteomyelitis is severe, surgery may be required.?
http://my.webmd.com/hw/health_guide_atoz/sto167507.asp?navbar=hw200221

  Good luck in your quest to change the certificate. Your mother?s
experience is not untypical of managed health care in the US. Stand
though, that even if tests came back negative, tests have to be run on
very ill patients, to assess their condition. A negative test can help
doctor?s rule out something, allowing them to focus on the real
problem. Tests such as blood cultures, that are drawn often on septic
patients, need to be drawn frequently. Some will come back negative,
and some can reveal a bacteria that is causing a fever. Most tests
ordered are very useful, and serve a purpose. I truly understand your
feeling that many tests seem unnecessary and may have caused pain and
anxiety in your mother. The fact that the doctors did not call you
back is inexcusable though. You have a right to lodge a complaint, if
you like. (You might want to wait until after the death certificate is
amended!) You can also call the hospital patient advocate services and
tell them about your experience at the hospital, along with the
doctor's names. SOmeone will then look into it.

Contact for information about filing a complaint:
Jonathan Fielding, M.D.
313 North Figueroa Street
Los Angeles, CA 90012
Jfielding@dhs.co.la.ca.us
Office (213) 240-8117
FAX (213) 975-1273

I?m sorry you and  your mother had to endure such an illness and the
subsequent treatment. Wishing you the best!

If any part of my answer is unclear, please request an Answer
Clarification, before rating, and I will be happy to respond.

Sincerely, Crabcakes


Search Terms
=============
Los Angeles + death certificates + changing cause of death
Los Angeles + amending death certificates
LA county medical examiner
Pseudomonas aeruginosa + nosocomial infections

Thanks very, very much.