DO NOT COPY. Objectives. Emergency Preparedness for Children With Special Health Care Needs (2010 Updated Version) Disclosures

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1 Emergency Preparedness for Children with Special Health Care Needs (2010 Updated Version) Loren Yamamoto, MD, MPH, MBA Emergency Preparedness for Children With Special Health Care Needs (2010 Updated Version) Loren Yamamoto, MD, MPH, MBA, FAAP, FACEP Professor of Pediatrics, Univ. Hawaii John A. Burns School of Medicine Emerg Med Director, Kapi olani Medical Center For Women & Children Objectives 1) Introduction to the Emergency Information Form (EIF) endorsed by the AAP and ACEP. 2) The role of the EIF in emergency/disaster preparedness. 3) Quality improvement programs in emergency/disaster preparedness. 4) Electrical power failure back-up strategies. Disclosures 1) No off label medication uses. 2) No financial relationship to any of the products mentioned. 3) I am a member of AAP COPEM and AAP/ACEP APLS Steering Committee (travel expenses covered). 4) I receive an editorial stipend and travel expenses from AAP/ACEP for APLS Editor. Children with Special Health Care Needs Cardiac, lung, renal disease Neuromuscular conditions GI conditions Hematologic conditions Endocrine conditions Genetic conditions Technology dependence Children with Special Health Care Needs CWSHCN, CSHCN Chronic medications High risk, complex treatment Technology dependence: Oxygen concentrator Ventilator Feeding pump Monitoring equipment CWSHCN - Cardiac disease Congenital heart disease Congestive heart failure Cyanotic heart disease Dysrhythmias Pacemakers Internal defibrillators Services is funded by FY 2008 Homeland Security Grant Program #2008-GE-T via the Hawaii State

2 Emergency Preparedness for Children with Special Health Care Needs (2010 Updated Version) Loren Yamamoto, MD, MPH, MBA CWSHCN - Lung disease Bronchopulmonary dysplasia Severe asthma Cystic fibrosis Tracheostomy care Respiratory failure CWSHCN - Renal disease Renal failure Wilm s tumor Nephrotic syndrome Peritoneal dialysis Hemodialysis CWSHCN - Neuromuscular disease Seizures Psychomotor retardation Myopathies Cerebral palsy Arthrogryposis Degenerative neuromuscular CWSHCN - GI conditions Short gut (home TPN) Liver failure GI malformation Idiopathic pseudo-obstruction Colostomy care CWSHCN - Hematologic conditions Leukemia, lymphoma Sickle cell disease Hemophilia Thalassemia Immunodeficiency CWSHCN - Endocrine conditions Diabetes Hypothyroidism, hyperthyroidism Congenital adrenal hyperplasia Addisonian crisis Growth hormone deficiency Services is funded by FY 2008 Homeland Security Grant Program #2008-GE-T via the Hawaii State

3 Emergency Preparedness for Children with Special Health Care Needs (2010 Updated Version) Loren Yamamoto, MD, MPH, MBA CWSHCN - Genetic conditions Trisomies Genetic malformations Metabolic conditions Enzyme deficiencies Tay-Sach s disease Maple syrup urine disease Children with Special Health Care Needs Complex medications Complex nutrition Complex fluid requirements Complex surgical repairs Complex resuscitation Technology dependence CWSHCN - Technology dependence Ventilator Oxygen tanks or concentrator Feeding pumps Mobility devices Monitoring equipment - pulse oximeter Home nebulizer, suction Stoma care Chest vest CWSHCN - Pharmaceutical dependence Insulin Anti-convulsants Digoxin Factor 8 Asthma meds Enzymes Transfusions Immune globulin Antibiotics Anti-dysthrhythmia meds CWSHCN - Nutrition dependence CWSHCN - Hospital dependence Total parenteral nutrition Enteral pump feedings Elemental feedings Special metabolic formulas Tertiary care specialists Pharmaceuticals Nutrition support Technology support Emergency department 24X7 Services is funded by FY 2008 Homeland Security Grant Program #2008-GE-T via the Hawaii State

4 Emergency Preparedness for Children with Special Health Care Needs (2010 Updated Version) Loren Yamamoto, MD, MPH, MBA CWSHCN - Emergency Information Form (EIF) 1999 Pediatrics, Ann Emerg Med EIF Benefits Facilitates medical care Past medical history summary Medication listing Management recommendations Baseline clinical status Contact information for specialists Highly beneficial in a disaster when medical records might not be available Services is funded by FY 2008 Homeland Security Grant Program #2008-GE-T via the Hawaii State

5 Emergency Preparedness for Children with Special Health Care Needs (2010 Updated Version) Loren Yamamoto, MD, MPH, MBA EIF Problems In a disaster, compromised: Not being used PCPs unwilling to complete the EIF Families do not maintain the EIF or bring it in during ED visits Difficult to update Does not integrate with EMR well Does not facilitate QA In a disaster, will the patient have it? Improving the EIF 2010 revised statement Computerizing the EIF Include acute exacerbation management Quality improvement mechanism Facilitate end of life planning, advanced directives Disaster preparedness Problems with computerizing EIF Sounds easy, but it isn t Agreement on standards, formatting Central repository compromises confidentiality During a disaster, internet access could be compromised Water-resistant paper back-up is still necessary Medical records access Information systems Communications systems Health care delivery systems Access to specialists Pharmaceuticals and nutrition products Computerizing the EIF Easier to update Easier to modify (include new features) Information content unlimited (vs limited by the size of the paper) Central repository, remote access Facilitates quality improvement programs Include acute exacerbation management Forces subspecialists to define management plans ahead of time Labs, IV fluids, drugs, etc. Emergency drugs might not be routinely available at all centers Declares whether patients can go to any medical center versus a specific medical center with special expertise, supplies, pharmaceuticals, etc. Services is funded by FY 2008 Homeland Security Grant Program #2008-GE-T via the Hawaii State

6 Emergency Preparedness for Children with Special Health Care Needs (2010 Updated Version) Loren Yamamoto, MD, MPH, MBA Quality improvement mechanism How many CWSHCN in practice? How many of these have EIFs? When was the EIF last updated? When was the last disaster drill for this patient held? Facilitate end of life planning Updating the EIF provides an opportunity to update end of life planning and advanced directives Many states have special forms for outof-hospital providers to honor advanced directives These forms could be attached to the EIF Disaster preparedness Suggested disaster types PCP, parents determine most likely disaster Drill disaster for their special health care needs Table top disaster drill Verbal discussion of what to do Hands on exercise to train what to do Computerized EIF Computerized EIF Computerized EIF Services is funded by FY 2008 Homeland Security Grant Program #2008-GE-T via the Hawaii State

7 Emergency Preparedness for Children with Special Health Care Needs (2010 Updated Version) Loren Yamamoto, MD, MPH, MBA Disaster preparedness Disaster shortages Earthquake Hurricane Tornado Flood Tsunami Blizzard Avalanche Land/Mud slide Fire, forest fire Infrastructure damage Shelter/structure Food/water shortage Meds, supplies, equip Nuclear radiation Explosion, blast Bioterrorism What kind of disaster drills should CWSHCN train for? Many different disaster types Fewer shortages Train for shortages How should the patient deal with shortage? What is the most common/likely shortage? ELECTRICITY Shelter, clothing Food, water, special nutrition Medication, oxygen Electricity Equipment Consultant expertise Information Services is funded by FY 2008 Homeland Security Grant Program #2008-GE-T via the Hawaii State

8 Pacific EMPRINTS Transcript Emergency Preparedness for Children with Special Health Care Needs (2010 Updated Version) Expert: Dr. Loren Yamamoto, M.D., M.P.H., M.B.A. Professor of Pediatrics, John A. Burns School of Medicine, University of Hawaii Vice-Chief of Staff, Kapiolani Medical Center for Women and Children Honolulu, Hawaii Date: March 31, 2010, Slide 1: Emergency Preparedness for Children With Special Health Care Needs (2010 Updated Version) The following presentation was recorded at Pacific EMPRINTS 2010 Pacific Preparedness Conference: Capacity Building to Address Vulnerable Populations in Natural Disasters, which took place on March 31, 2010, at the Manoa Grand Ballroom. Pacific EMPRINTS is honored to present Dr. Loren Yamamoto, Professor at the John A. Burns School of Medicine, and Emergency Medicine & Vice Chair of Staff at the Kapiolani Medical Center for Women and Children. Dr. Yamamoto also serves as the Chief Editor of Radiology Cases in Emergency Medicine and Advanced Pediatric Life Support, and as an Editorial Board member for the American Journal of Emergency Medicine and Pediatric Emergency Care. He is Chair of the AAP/ACEP Steering Committee on Advanced Pediatric Life Support and holds national positions with the American Academy of Pediatrics. Dr. Yamamoto also peer reviews more than a dozen journals in the field of pediatrics and/or emergency medicine, including JAMA and Pediatrics and Annals of Emergency Medicine. His clinical and research interests span across the fields of pediatrics, emergency medicine, maternal and child health, epidemiology, computer science, medical education, preventative medicine, health services administration, business administration, telecommunications, and parenting. Dr. Yamamoto has published 117 journal articles, and authored 38 textbooks and reference publications, as well as more than 70 electronic submissions. Here is Dr. Loren Yamamoto giving his presentation entitled Emergency Preparedness for Children with Special Health Care Needs., Slide 2: Objectives, Slide 3: Disclosures The first two slides are disclosures and the objectives, those are in your book, so, dispense with this.

9 , Slide 4: Children with Special Health Care Needs So you ll see this acronym, CWSHCN or CSHCN, this stands for Children with Special Health Care Needs, and of course all children are vulnerable populations, and these children with special health care needs are particularly more vulnerable than the rest of them. They have chronic medications, they are at high-risk medical conditions, their treatment is very complex, and many of them are dependent on technology. Typically, the more important technologies that might sustain life are oxygen concentrators, ventilators, feeding pumps, and monitoring equipment that they re on., Slide 5: Children with Special Health Care Needs It s just a brief listing of some of the conditions that they might have, but this list is very numerous., Slide 6: CWSHCN Cardiac disease Just a few cardiac conditions., Slide 7: CWSHCN Lung disease Some common lung diseases that they have., Slide 8: CWSHCN Renal disease Some common kidney diseases that they might have., Slide 9: CWSHCN Neuromuscular disease Neuromuscular disease is a lot of the patients I see in the Emergency Department., Slide 10: CWSHCN GI conditions Gastrointestinal conditions., Slide 11: CWSHCN Hematologic conditions And some hematologic conditions., Slide 12: CWSHCN Endocrine conditions Endocrine conditions., Slide 13: CWSHCN Genetic conditions Genetic conditions. These conditions are so rare and uncommon that typically the parents are telling me how to take care of this when they come in, because they re so unique, each of these., Slide 14: Children with Special Health Care Needs So, children with special health care needs, they have complex medications. They have complex nutrition needs, it s not something you can go to Long s or Safeway and buy this stuff off the shelf. Our pharmacy at Kapiolani has to make this for them, or they have to order it special, or from a pharmaceutical supply stores. They have complex fluid requirements, they have complex surgeries that they ve had, their resuscitation is complex, and they re often dependent on technology.

10 , Slide 15: CWSHCN Technology dependence Here s just a few of those things that I mentioned earlier., Slide 16: CWSHCN Pharmaceutical dependence These are some of the complex pharmaceutical agents that they will need., Slide 17: CWSHCN Nutrition dependence And some of the complex nutrition that they need., Slide 18: CWSHCN Hospital dependence Basically, these children are highly dependent on tertiary specialty children s centers, or other general hospitals. In this town, it s largely Kapiolani Medical Center for Women and Children. A lot of these medications are compounded by our pharmacy, or they are brought in by special order and stockpiled there, or they re supplied by a third party pharmaceutical company that supplies the medications and the nutrition things for them. They re fortunate that this community has a specialized emergency department that s available for them 24/7, so they are often highly dependent on the hospital., Slide 19: CWSHCN Emergency Information Form (EIF) The American Academy of Pediatrics, in conjunction with the American College of Emergency Physicians, so AAP, and ACEP are the acronyms that are used. In 1999, published a statement on the use of a form that they called the EIF, the Emergency Information Form. Now, most of what we mentioned here is applicable to adult medicine as well, it s just that in pediatrics, the concept of children with special health care needs, and their vulnerability in disasters has received special attention. And, in 1999, prior to most of the modern disasters that we can think of, you know, had the foresight to come up with a form like this, and the purpose of the form is for parents or caretakers of children with special health care needs to identify the special needs that they have to facilitate providers like me to provide them with care when they come to our emergency departments., Slide 20: Emergency Information Form for Children With Special Needs Although I m a specialist in pediatric emergency medicine, the kinds of problems that they present with are very specialized, and most of the time we re reliant on forms like this, reliant on instructions from sub-specialists, and usually reliant on the parents on how to manage their children s problem. So this is just an example of the first page, what it would look like., Slide 21: Diagnoses / Past Procedures / Physical Exam: Next page., Slide 22: Diagnoses / Past Procedures / Physical Exam continued: Next page. Medications, management data.

11 , Slide 23: Immunizations The top part of this page shows the immunization table, and herein lies one of the problems of a paper form is that in 1999, this was current for the type of immunizations that children get, but it s rapidly outdated, pretty much every year. And by 2010, where we are now, this table is seriously short of any of the immunizations that children get now., Slide 24: EIF Benefits So the EIF, the Emergency Information Form has several benefits. It facilitates medical care. It gives you the past medical history summary. Now we have a very fancy and very expensive electronic medical record at our medical center, and most people that are not medical care providers that don t use these computerized EMRs think that I have instant access to everything, and if you hear some of these Kaiser commercials, that s what it might lead you to believe, that I have instant access to everything about this patient. To some degree that s true, but the issue is I have to find it in this EMR, and it s not as though I think in my brain, I need to see this piece of information. I have to go find it in this massive computer search there. It s not exactly the friendliest way to look for it. In the days of paper charting, where we have little tabs like in your book there, you could look for a tab and just open it. But in the electronic medical record, I have to negotiate it, and each one of these looks different, whereas in the paper days, the paper charts all look the same. In our community, Kaiser, Queen s, and Hawaii Pacific Health all use the epic EMR system, but in other communities where there are multiple EMRs in use in the various parts of town, a doctor that s going from one hospital to the other has to learn to negotiate all of these EMRs differently. So, locating the past medical history is difficult even in the EMR age, so the EIF sort of facilitates that, it puts it on one or two pieces of paper. The medications are listed there. Management recommendations are present, so a patient with a special problem can have that outlined how I need to take care of that. It describes what their basic baseline clinical status is. I know what a normal exam is like, and I know when it s abnormal, but if a patient is chronically abnormal, I need to know whether their degree of abnormality has changed from what their baseline is. I need to know their contact information for their specialists, and this is potentially highly beneficial in a disaster when medical records might not be available. See, even the EMR at our hospital is highly reliant on a network system that is working. If the networks are not working, the server is not working, the system will go down. Even in optimal times, when Hawaiian Electric is feeding electricity properly, Hawaiian Telephone, Hawaiian Telcom is supplying the internet infrastructure optimally, a network is never working at 100% efficiency. For those of you that are network experts, you know this. And trying to figure out why that network is not working optimally is a big challenge. So when infrastructure goes down, like in a disaster, these things probably will not work like what we expect them to work., Slide 25: EIF Problems What is the problem with the EIF right now? This policy statement came out in 1999 and the revision to the statement, for which I m the author, and I think that s why I was asked to do this talk, is about to be published this week, next week, something like that, it s basically hot off the, I could have brought it, but it s embargoed by the American

12 Academy of Pediatrics until it actually comes out in official print. Well, it s not being used. The primary care physicians are unwilling to complete the EIF for patients, it s not that they don t want to, it s just that it takes a lot of time, and they don t have that kind of time to do these. Families might not necessarily maintain the EIF or bring the EIF with them during emergency department visits. It s like a patient who is severely allergic to bees and carries around an epinephrine injector. What s the probability that they have that epinephrine injector with them when they get stung by a bee? If you don t have it with you when you come to the emergency department, it s not very useful. It is rather difficult to update. It does not integrate with current electronic medical records well. The paper form did not facilitate quality improvement, quality assurance, and in a disaster, will the patient have it?, Slide 26: In a disaster, compromised: In a disaster, several things that we take for granted are compromised, so access to medical records is compromised, information systems are compromised, communication systems are compromised, health care delivery systems are compromised. We don t have access to specialists if we don t have communication infrastructure. And pharmaceuticals and nutrition products that need to be delivered to the state, or need to be distributed from state stockpiles into the community, that will be compromised as well., Slide 27: Improving the EIF 2010 revised statement So, in 2010, this statement, we ve completed the revision, and it s gone through the lengthy review process, multiple stakeholders have reviewed the initial drafts of it and have signed off on it, so it s about to be published. The improvements now are how can this EIF be computerized? It also includes acute exacerbation management and a quality improvement mechanism, and we ve also suggested that we use it to facilitate the end of life planning and advanced directive discussions that physicians typically are very uncomfortable bringing up with patients. And then, disaster preparedness is also a new feature in the 2010 revision., Slide 28: Computerizing the EIF If the EIF was computerized, it would be easier to update. It would be easier to modify. It, in theory, has a size limit, but a computerized form can sort of keep opening up more and more and more areas, so in theory it s not limited, but if you print it out, it is limited by the size of the paper. This idea of a central repository and remote access is now possible, and it facilitates quality improvement programs., Slide 29: Problems with computerizing EIF Now, this sounds very easy, but it actually isn t. In the 2010 revision, we would like to have had an electronic EIF, but it was not possible to gain sufficient consensus to say, Here is what it looks like. So the 2010 policy statement, all it says is, This is what s possible. And one of these days when we get agreement on what this thing looks like, then this is what the potential holds. So the agreement on standards, the agreement on formatting is very difficult, it was impossible to achieve consensus on this, so we were not able to achieve this portion. Another thing that people need to understand is that this central repository concept, in other words, universal access to information from very

13 distant areas. If somebody from Kansas comes to Hawaii, can I look at their EIF through some central repository? The more we improve accessibility, the more this compromises confidentiality. And if anyone expects perfect confidentiality and great, great, great access, you need to understand that those two issues are totally incompatible with each other. So there needs to be some happy medium, and we need to have some compromise, we need to be able to accept some degree of compromise in confidentiality in order to gain wide access. During a disaster, the internet is likely to be compromised, so a central repository reliant on the internet, that will not work, which means that ultimately we have to rely on good old paper, water-resistant paper is still necessary., Slide 30: Include acute exacerbation management The acute exacerbation management issue forces subspecialists to define the management plans ahead of time. So what kind of laboratory studies the patient needs, IV fluids, drugs, etc. Emergency drugs might not be available at all centers, and it declares whether a patient can go to any medical center, the closest medical center, or they need to come to a certain medical center, so depending on where the patient lives and what type of hospitals are available in their environment will dictate where that patient goes., Slide 31: Quality improvement mechanism A quality improvement mechanism that a primary care office could do is they could identify how many children with special health care needs are in their practice, and how many of these have emergency information forms. And when the EIF was last updated, and when was the last disaster drill for this patient held. So you could take the number of EIFs and divide it by the top line there. And that fraction is a quality improvement number that can improve over time. Similarly, when was the last EIF updated, you know, you could take a mean of when it was, how old the updates are, and as this mean number gets smaller and smaller, that indicates the quality improvement in your practice., Slide 32: Facilitate end of life planning It facilitates end of life planning. But I m sort of a little bit short on time, so I won t go into this in great detail., Slide 33: Disaster preparedness Disaster preparedness is what we re here to talk about. So there s suggested disaster types, and the PCP is the Primary Care Physicians and parents, ultimately must determine which disaster type is most likely to affect their child. And then we should drill this disaster for the special health care needs in a table top disaster drill, or just simply a verbal discussion of what to do. A hands on exercise to train them what to do with some actual materials is fairly difficult to prepare when you re talking about a private doctor s office. But usually a verbal discussion will help you think about things ahead of time and prepare you better., Slide 34: Computerized EIF Here s what a computerized EIF could look like, it could look like something like this, which is a spreadsheet. And although these lines look like they re limited, when you type in more stuff, it just opens up more lines. You need a consent here, and you need a date

14 as to when you last updated it, your specialist here, how you get in contact with them, etc. Primary pharmacy., Slide 35: Computerized EIF Some baseline status about their clinical information, some medications., Slide 36: Computerized EIF And in this area here, we re now coming to the disaster preparedness issues. So which disaster is most likely to affect the patient, and which one will you drill for, down here, and when was the last type of drill you did, and whether it was a verbal review, a paper review, table top model, computer simulation, etc., Slide 37: Disaster preparedness So these are some potential disasters, and which ones of these are we at most risk of, but, we had a hurricane, we ve had several hurricanes, we ve had an earthquake recently. We ve had a tsunami warning recently. So as time goes on, you know, we sort of, this list on what my community is more vulnerable to, it sort of grows and grows and grows and grows. And then pretty soon we re gonna get into blizzard, and avalanche, and that sort of thing too, perhaps., Slide 38: Disaster shortages But my point is this list is very long, and it grows and grows and grows. But they have many things in common. And the things that they have in common is that they result in shortages. So, rather than go through a list like this that has the different disaster types, really, whether it s a hurricane or an earthquake, or a high wind warning that knocks down utility poles, or a car that runs into a major utility pole and knocks it down, we really should look at shortages instead. So, you look at these shortages and ask yourself, which one of these shortages have you experienced personally, or, if you ve experienced multiple of these, you know, which one have you experienced the most often? Well, how many of you have experienced shortages of shelter and clothing? How many of you have experienced a shortage of food and water, or special nutrition? Medication or oxygen, electricity, equipment, the need to consult with a subspecialist. Or just a need for information. I think most of us would say that we ve experienced electricity shortage, because this doesn t take a disaster, it just takes a truck driver driving into a utility pole and knocking it down next to your house, and then your house now has no electricity. Or a high wind warning. We didn t even have a hurricane, but the most recent electrical outage was just due to high winds., Slide 39: What kind of disaster drills should CWSHCN train for? So there are many different disaster types, but there are fewer shortages, so I think one of the strategies could be to train for shortages when you re talking about children with special health care needs. And the most common likely shortage is electricity. Now electricity for most of us means that we have to keep our refrigerator door shut so that you don t open it because we want to keep the food cold, and hopefully the electricity comes on pretty soon. But if you re on a home ventilator, that means something different to you, right?

15 Resources: 1. American Academy of Pediatrics: 2. American College of Emergency Physicians: 3. Univ. Hawaii Pediatrics, Kapiolani Medical Center: 4. EMSC Resource Center: