Stacking the deck

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  • *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
  • Stacking the deck

    1. 1. Stacking The DeckA presentation by Regina Holliday
    2. 2. MyNakedQuantifiedSelf
    3. 3. WhatOpen and TransparentReally means…
    4. 4. The game that may not end.
    5. 5. If you could only take 4 toys to a desert island,what would you take?If you could only bring up 4 concernsduring your Doctor’s appointment, which would you pick?
    6. 6. When is a toy more than a toy?When does our play become asymptom of a much larger problem?.
    7. 7. AdverseChildhoodExperienceSurvey
    8. 8. Telling the story changes things.The way patients are treated reminds me child abuse in the 1980’s.No one talked about it.
    9. 9. Patient Reported Data
    10. 10. The Game We Play
    11. 11. On Friday March 13th, We went to the ER because Fred was in so much pain .We waited three hours before being sent home.
    12. 12. Fred was hospitalized on March 25th 2009for the administration of tests.On March 27th, he was told while alone thathe had “tumors and growths.”He was scared and confused and did not understand.His oncologist left town for the next four days to a medicalconference and was not reachable by phone or email.
    13. 13. What was the diagnosis? What were the treatment options? Would he get a pain consult?
    14. 14. This is my husband’smedical record.I was told it would cost73 Centsper pageAnd we would have towait 21 days to get a copy.
    15. 15. “She must not have tried very hard to get the record….”Comparing access to an unpublished book byStephen Kingto accessing theElectronic Medical Recordwhile hospitalized.
    16. 16. Going to Hospice.
    17. 17. Try to get an autopsy… I dare you.In the United States; hospital autopsy rates of 60% in the 1950s fell to 12% in the early1990s 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.
    18. 18. What if the patient’s story and clinical datawere equally valued?
    19. 19. Who taught you how to be a patient?
    20. 20. Freddie grows beyond peering througha door crack to walking in a Gallery.
    21. 21. Isaac grows up.He joins the gallery as an artist.His jacket is named “Feelings.”He is marching in a rally supportingpatient data access.
    22. 22. Why can’t we ask Hallmarkto make hospice cards?Would that help us talkabout end of life?
    23. 23. Why not think in new and child-like ways?
    24. 24. You can take a negative and turnit into a POSITVE.

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