*Paying Our Last Respects: The Neonatal Autopsy as Continuing Care and Ethical ObligationJane Donohue Battaglia, MD, MA*+Author Affiliations*Associate Clinical Professor, Anesthesiology, Pediatrics and Preventive Medicine, Center for Bioethics and Humanities, University of Colorado School of Medicine, Denver, COOBJECTIVESAfter completing this article, readers should be able to:List the benefits of a postmortem examination.List possible reasons for the decline in autopsy rates.DECREASING RATES OF AUTOPSYEthical discussions of autopsies usually center around consent: how it must be requested, who may give it, or limitations on the procedure. All of these issues should concern us, but the real ethical issue about autopsies is that the procedure itself is not being done. The worldwide trend of falling autopsy rates (1) involves the United States; hospital rates of 60% in the 1950s fell to 12% in the early 1990s and less than 5% in nonteaching hospitals. (2) The average United States hospital rate of autopsies was 50% in the 1940s and 38% in 1973. (3) A review in 1983 at an adult teaching hospital documented a 75% rate in 1960, 71% rate in 1970, and 38% rate in 1980. (4) Although neonatal autopsy rates have maintained a higher level than those of adults, (5) they too are falling. In Scotland, rates began to decline in 1994. (6) In Wales, some rates fell below 50%, with neonatal perioperative autopsy rates at 45%. (7) The rate in one Australian center was 43% (8) and 39.7% in another. (9) In the United States, one study documented a decline in neonatal autopsies from a range of 63% to 81% down to 52% (10), and a 10-year series from 1984 through 1993 demonstrated a decrease from 71.2% to 47.7%. (11)http://www.npr.org/2012/02/05/146355717/fewer-autopsies-mean-crucial-info-goes-to-the-grave
Even a child
When the abuse becomes too bad call this number.
I met Fred Holliday in a scenic painting class atOklahoma State University.
We would talk of Stephen King’s Dark Tower.
We would fall in love.
You know it is true love when you sell your comic book collection to pay for the wedding.
In 1998 Freddie Holliday III was born 4 weeks
early at Lawrence Memorial Hospital in Lawrence, Kansas.
He needed to stay in the NICU.
We we able to stay with him the entire week
in the Segebrecht Room.
In Kansas I would paint one painting.
I would paint it for one patient on a hot summer day.
When we moved to DC, I would paint
I would also
teach art at a local preschool.
I would work in a toy store.
In 2005 Fred would get a PhD in film studies
and would write his dissertation on “Buffy the Vampire Slayer.”
In2006, Isaac Holliday was born.
Everything we ever wanted…
Resolutions January 2008:
1. Get Medical Insurance for the whole family
2. Get little Freddie into a special needs school
3. Fred gets a job in his field
4. Spend more time together as a family
5. Get a two bedroom apartment
Fred was happy with his new job.
But he was very tired,
He went to the doctor and was
diagnosed with hypertension.
During the months of
January, February and
March of 2009,
On Friday March 13th, We went to the ER because Fred was in so much pain .
We waited three hours before being sent home.
Fred was hospitalized on March 25th 2009
for the administration of tests.
On March 27th, he was told while alone that
he had “tumors and growths.”
He was scared and confused and did not understand.
His oncologist left town for the next four days to a medical
conference and was not reachable by phone or email.
What was the diagnosis? What were the treatment options? Would he get a pain consult?
After waiting for
days for a transfer
to another hospital for a second opinion,
We were sent with an out of date
and incomplete medical record
and transfer summary.
The new staff spent
hours trying to
cobble together a current medical record
Using a telephone and a fax machine.
The Power of a Sticker:
This is thevital clinical
information from Fred’s
electronic medical record
presented in the style of the
Nutrition Facts Label.
Then painted on the wall of
Pumpernickel’s Deli in
“What about the
We were told the order had been placed.
It did not come.
I am trying to talk with Christine Kraft and epatient Dave.
Why did we get more help and answers from
than from our local hospital ?
Within one day were in email contact
and then spoke on the phone.
By ten o’clock May 4th 2009, I was
talking on the phone with Dave’s
Oncologist about my husband’s cancer.
There may be delays on
our way to patient data access.,
The Patient Portal and Clinical Decision Support for Patients
In orderfor patient input to have equal weight compared to clinical measures,
patients/caregivers must have access to the tools of data creation and capture.
Patients must be part of the active data creation process from system design, triage andthrough
the entire episode of care culminating in a personal discharge summary.
Inside of every EMR there is a patient story,
And sometimes it is told by Betty of Bellin Health.
2 year study at Primary care settings of Beth Israel
Deaconess Medical Center, Geisinger and
90% patients responded they understood what they
had read & were not bothered by it.
1-2% were concerned/offended by the contents of
87% of those patients enrolled in this study did
check the notes.
Doctors said the study either only added a modest
increase in work or that it was negligible.
80% Patients claimed greater adherence to
medication protocols due to access to the notes.
Telling the story changes things.
How would the child in me change things?
The way patients are treated reminds me child abuse in the 1980’s.
No one talked about it.
Then we heard of Adam Walsh and saw faces on milk cartons.
Prototype Consumer Reporting System for Patient Safety,
When the abuse becomes too bad call this number.
Data transparency must continue unto the end of a life and beyond.
In order to provide necessary data for evidence based medicine we must reinstate a statistically
significant autopsy rate.
In the United States; hospital autopsy rates of 60% in the 1950s fell to 12% in the early
1990s and less than 5% in nonteaching hospitals.*
Private autopsy services begin at $2,000.00 and are far out of reach of many consumers.
In addition, studies find that there is disagreement between pre and post-mortem diagnoses in almost 30% of cases.
The more stickers that are out there the more important it seems.
The more important it seems, the more people want to know what it is.
The more they ask they ask each other.
real power from perceived power.-Shepard Fairey
Freddie grows beyond peering through
a door crack to walking in a Gallery.
David Lee Scher, MD
All over the world, patients
Are demanding their data.
They are demanding access
to the data from their doctors,
from their hospitals,
and from the devices
inside of their bodies.
Blue Button: More than app for veterans
and the story of Peter L. Levin
Shares the story
of his brother’s
life and death
upon his back.
Isaac grows up.
He joins the gallery as an artist.
His jacket is named “Feelings.”
In this year’s jacket he focused
on diabetes care.
Standing out and looking different,
Can be uncomfortable or frightening.
But is often needed for advocacy.
You can take a negative and turn
it into a