The Empowered Patient: Ways You Can Get the Most From Your Medical Team

Shani L. Weber

Heather Butler-Pierce

The EDS Treatment Team

Team Captain:

You are the most important member of the team!!!

Your Medical Support

• Primary Care Physicians: Manage overall care and coordinate care among specialists

• Specialists: Varies by how EDS affects you

• Other Medical Providers: Physical Therapists, Hand Specialists, Pharmacists, etc.

Managing Your Team

• You are the coordinator of information between the team members

• Team will change according to your needs

• Know the member’s purpose before adding to your team

• Educate yourself on what each specialist does and what their limitations might be

What Does a Good Doctor Look Like?

• Ability to connect dots

• Interest in learning and trying new things

• Communicator and collaborator

• Transparent

What Does a Good Patient Look Like?

• Takes charge of their health

• Active participant

• Seeks support when needed

• Leaves emotions at door

• Comes prepared

• Honest

• Willing to try treatment options

• Aware when adjustments need to be made

What does good doctor-patient relationship look like?

• Collaborative

• Open communication

• Honest

• Mutual respect

• May not always agree but do respect what each brings to the relationship

But with EDS, we need more than one great patient-doctor relationship.

We need many great patient-doctor relationships!

This means you need to carefully select the members of your medical team.

How to Find Doctors for Your Team

Recommendations from:

• Support groups

• Family

• Friends

• Online groups

• Foundations

Interview Appointment ~ The Goal

You are looking for doctors who are…

• Willing to learn about EDS if they don’t

already know about it

• Communicating well with you

• Showing interest in helping you be as healthy as possible and feel as good as can be

Interview Appointment ~ Roles

• Figure out what role you want the doctor to fill then ask if the doctor is willing to fill that role

• Find out what role the doctor is willing to fill and decide if you are ok with that

Interview Appointment ~ Questions

• Do you accept my insurance?

• What hospitals do you use?

• How many patients with EDS have you treated?

• Will I see you each appointment or co-workers?

Interview Appointment ~ More Questions • Are you or your nurse reachable for questions?

• Are same-day appointments possible when ill?

• Are evening or weekend hours available?

• What is your health philosophy? Alternative medicine? Western medicine? Other?

After the Interview Appointment

Ask yourself:

• How long did you wait in the waiting area?

• Did the doctor listen to you?

• Did you feel at ease?

• Did you feel rushed?

After the Interview ~ The Decision

• Was the doctor familiar with

EDS or willing to learn?

• Was the doctor open to questions?

• Do you feel you and the doctor can work together?

Preparing for Your Appointment

• Agenda

• Medications

• Goal

• Timeline

• What you tried and how that worked

• Samples, pictures, or short video of symptoms

(see examples in appendix)

Sample Appointment Agenda • Date: 7-9-14 Doctor Seen: Dr. James Weight: BP: • Purpose of Appointment: Determine cause and review treatment

options for increasing dizziness. • Pre-existing Conditions: Ehlers-Danlos Syndrome, Hypermobility

type, POTS, Osteoarthritis • Current Medications: Tramadol ER 300mg/day, Vit. D3 2000IU/day • Health issues new since last visit: Becoming dizzy as many as 7

times per day, especially when standing for more than 10 minutes. Reported symptoms to pain management specialist Dr. Smith on 6-12-14 who said to consult you.

• Notes:

• Questions: 1. Should I buy a blood pressure monitor? 2. Can you recommend one? 3. When should I seek emergency medical care with this symptom?

Sample Appointment Agenda • Date: 7-9-14 Doctor Seen: Dr. James Weight: 120lbs BP: 98/52 • Purpose of Appointment: Determine cause and review treatment

options for increasing dizziness. • Pre-existing Conditions: Ehlers-Danlos Syndrome, Hypermobility type,

POTS, Osteoarthritis • Current Medications: Tramadol ER 300mg/day, Vit. D3 2000IU/day • Health issues new since last visit: Becoming dizzy as many as 7 times

per day, especially when standing for more than 10 minutes. Reported symptoms to pain management specialist Dr. Smith on 6-12-14 who said to consult you.

• Notes: Dr. said to increase sodium to 4000mg/day and to buy Thermatabs. Agreed to chart when dizzy, what I had been doing, how much fluids/salt I consume, and how that is working.

• Questions: 1. Should I buy a blood pressure monitor? 2. Can you recommend one? 3. When should I seek emergency medical care with this symptom? 4. Where can I buy Thermatabs? 5. Does the sodium include what I eat?

Sample Chart

At the Appointment ~ Plan who is the point person

• You need a good thinker and advocate at the appointment ~ It may be you or it may not but plan ahead

• Bring a family member or friend as an advocate and extra pair of eyes and ears

• Take notes during the appointment or ask to record the appointment ~ it is too hard to remember everything

At the Appointment ~ Share EDS information

• Educate doctor about EDS

• Refer to EDNF Medical Resource Guides and peer-reviewed journal articles http://www.ednf.org/medical-resource-guides

At the Appointment ~ Bring your data

• Share pictures of the symptom or samples of body fluids that may help solve what is going on

• Share charts you make of symptoms, what you are trying for treatment, and how it is working

• Ask written questions ~ but limit to a few for shorter appointments

At the Appointment ~ Remember:

• They are experts of the human body and you are the expert of you

• You are not looking for validation, but are looking

for problem solving • The focus is on information sharing and

identifying priorities

• You need to be a good time manager

At the Appointment ~ This is key!

• Be open to trying different treatment options

• If you say no to everything proposed, then the doctor’s toolbox of treatment options is empty

How would you handle this conflict???

Five Steps for Conflict Resolution

• Step aside from the emotions

• Identify the Red Flag behavior

• Focus on your goal

• Evaluate

• Find a resolution

Step aside from Emotions • Notice your reaction (Anger, frustration,

indignation, invalidation)

• Remember not to personalize the situation

• Decide to step aside from the emotions to solve the problem

• Try reframing the situation

Identify Red Flag Behavior

Separate the person from the situation or behavior: • Communication issues • Condescending attitude • Unable answer questions • Unwillingness to discuss concerns • Unwillingness to try treatment options • Disrespectful • Not respectful of time Note: These behaviors can be exhibited by both doctors and

patients.

Indentify Goals

What are you trying to accomplish with this person or in this situation?

• Diagnosis

• New treatment plan

• Medication access

• New member for your team, etc…

Evaluate

• Do I need more clarity on this issue?

• Is there any valuable information or help being offered to me?

• Is this person a valuable member of my team? (Long term or short term)

• Are there other resources I can engage?

• Should I just be moving on…

Resolution

• Will look different in each situation

• Can result in improved relationship

• Usually will not be an outright apology

• Can be personal choice to move on

• Can also be amendment to medical record

• Letters to Administrators, etc…

Conflict Resolution in Practice

• Step aside from the emotions

• Focus on your goal

• Identify the Red Flag behavior

• Evaluate

• Find a resolution

What can we learn from this?

Conflict Resolution Do’s and a Don’t

• Focus on problem not person • Work on problems collaboratively • Use “I” statements • Repeat back in your own words what you have

heard to check for misunderstandings • Clearly state where there are agreements • Actively listen And… Don’t worry about blame or rightness, focus

on your best treatment plan and health possible!

Keeping Records

• Medical records

• Charts

• Journals

• Educational materials

• Health Apps

• Doctor portals

• Store in accordion files, binders, or scanned and uploaded documents

Sample Chart

The Emergency Room ~ Their Role

The role of the ER is to stabilize patients:

• So they can see their local doctors or

• So they can be admitted into the hospital

The ER ~ When to Go

Some examples are:

• Chest pain with vomiting or shortness of breath,

• Broken bones

• Sudden and sharp abdominal, chest or pelvic pain

• Unexplained or unceasing bleeding

• Difficulties with breathing or circulation

• Loss of vision

• Difficulties speaking or partial paralysis

• Sharp flank pain

The ER ~ When NOT to Go

• Your symptoms can wait for your doctor appointment

• You know the problem but want them to give you pain medication

• Your doctor(s) have not figured out what the problem is yet so you are hoping Dr. House is in the ER

Hospital Stays

Bring:

• Your list of doctors, medications, surgeries

• An advocate: family or friend

• A bag with a book or things to do to pass time

• Comfortable clothing

• A favorite pillow

• Your phone

• A copy of directives

Having EDS is not easy. But by being educated about your conditions and building a medical

team with whom you trust and work well, you can focus on living your life the best way possible.

Thank you!

Appendix

Please enjoy the resources we provided in the appendix of this presentation to help you in getting the most from your medical team.

Nifty Tools

• MyMedical – Application for keeping personal health records

• Google Calendar – Features to record when doctor appointments are, sharing that information with others, alarms to remind you

• Loansome Doc – NIH department that allows you to order the full article to abstracts you have seen in PubMed

• Dragon Speak – Voice to text software

List of Specialists

• The world of medicine has become evermore specialized. Here is a great website for looking up many of the different types of specialties as well as the definition for each: http://intermountainhealthcare.org/providers/specialties.html#allergy

• Use resources like this to match your medical needs or symptoms with the appropriate specialist. Then use your tools to find who is best to see in your area.

Health Information Portability and Accountability Act (HIPAA) • HIPAA controls who can see your medical records

and how those records must be stored. It covers paper, electronic, and oral records. It is important you understand this act, how it affects you, and your rights under it.

• http://www.hhs.gov/ocr/privacy/hipaa/understanding/consumers/index.html

Don’t Forget to Schedule Regular Health Check-ups! • Annual physicals

• Dental

• Eye appointments

• Vaccinations

• Bone density

• Gynecological/Mammograms/Colorectal

• Cholesterol and blood pressure screenings

• Investigate with doctor any new symptoms

Care Notebooks • Keep ongoing journal and/or record of your

health and symptoms, examples here for Care Notebook: https://globalgenes.org/toolkits/becoming-an-empowered-patient-a-toolkit-for-the-undiagnosed/resource-guide/

Do’s

• When scheduling, request the

30-minute or longer appointment slot.

• The earlier in the day the appointment is scheduled, the less behind schedule the doctor will be (thus the less time you spend waiting to see the doctor).

• Know where the office is and plan to arrive early to fill out paperwork.

• Keep prescriptions through one pharmacy.

More Do’s

• Be honest about everything…it is the only way the

doctor will have the information she needs to develop a plan that may help. Shading the truth or leaving out important details helps no one.

• Contact your insurance company prior to treatments to be sure they are covered—same with specialists and clinics to see if they are in-network or how to get them labeled as such…saves you lots of stress.

More Do’s

• Understand the limits of the medical world: tests, images, prescriptions, and surgeries.

• Make addendums to medical records to correct mistakes.

• Maintain a hospital-ready kit ~ List of medications, doctors’ contact information, pillows, reading material, emergency contact numbers, insurance information.

And More Do’s

• Be clear about your symptoms…be ready to answer or have written ahead of the appointment: “When do you think it started? Is it getting better or worse? What makes it better? What makes it worse? Where is the pain? Does it radiate?”

Don’ts

• Don’t bad-mouth other doctors to your doctor. The one exception to this if you are merely reporting about a doctor this one refers patients to…but report in a clinical way and not a “victimized” way.

• Don’t lie about how you are taking medications or using treatment options.

• Don’t take it personally if a doctor is discussing weight or lifestyle choices ~ the doctor is sharing information on known risks to health.

More Don’ts

• Don’t assume a prescription or surgery is the solution for all problems ~ sometimes PT, OT, or alternative options will provide better outcomes.

• Don’t assume that your doctor can solve all problems in one appointment. Identify the most pressing problem early in the appointment.

• Don’t expect doctors to read articles during the appointment ~ only bring articles from scientific, peer-reviewed journals or national patient organizations.

EDS-Specific Resources

• EDS general medical resource guides…2007 and 2010: http://ednf.org/medical-resource-guides

• EDS in Practice: http://www.ednf.org/eds-practice • Dentistry Medical Resource Guide: http://ednf.org/dentistry-resource-guide • Ophthalmology Medical Resource Guide: http://ednf.org/ophthamology-

resource-guide • Pain Management Medical Resource Guide: http://ednf.org/pain-

management-resource-guide • Vascular Medical Resource Guides and booklets: http://ednf.org/vascular-

resource-guides • ER and Surgery booklet: http://ednf.org/er-and-surgery-information • An Educator’s and Parent’s Guide to the EDS Child:

http://ednf.org/sites/default/files/EDNF_ParentsGuideForEducators.pdf • The EDS Wallet Card:

http://ednf.org/sites/default/files/EDNF_WalletCard2010S.pdf

EDS –Specific Resources

• Ehlers-Danlos Syndrome, Classic Type http://www.ncbi.nlm.nih.gov/books/NBK1244/

• Ehlers-Danlos Syndrome, Hypermobility Type http://www.ncbi.nlm.nih.gov/books/NBK1279/

• Ehlers-Danlos Syndrome Vascular Type http://www.ncbi.nlm.nih.gov/books/NBK1494/ and http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1971255/

• Ehlers-Danlos Syndrome, Kyphoscoliotic Type http://www.ncbi.nlm.nih.gov/books/NBK1462/

• COL3A1 haploinsufficiency results in a type of EDS- Vascular type with delayed onset of problems and a longer life expectancy http://www.ncbi.nlm.nih.gov/pubmed/21637106

Doctor Appointment Agenda Sample

Type up a one-page summary of what has been going on, why you are here today, and what you want.

Preexisting Conditions: Ehlers-Danlos Syndrome, etc… Current Medicines: Listed all meds, doses and times per day here. Highlighted med changes since last visit Medical Hx updates since last visit: 10/12 Hospitalized at _________. (gave details concisely). Gastric diverticulum noted and measured in CT during testing. See hospital report. 12/5 Dx with vision issue by Dr. R at _____. GI issues since last visit: Noted here the most remarkable issues in last 6 months or symptoms he has wanted to monitor. Questions/Concerns I have: 1.Possible med changes after hospitalization 2.Is recurrent stomach pain from the diverticulum? 3.Managing fiber intake with GI issues. 4.Wrap up questions.

Sample Timeline for Appointments ~ What has been going on, what has been tried, what are the results, etc.

Preexisting Conditions: Ehlers-Danlos Syndrome, etc… Current Medicines: (Listed by mg. dose, times per day)

Supplements: (Also listed by mg, dose, frequency)

Week of Oct. 5th

Felt tightness in esophagus region that wouldn’t go away. Removed acidic and spicy food from diet, reduce caffeine to am only as week progresses pain and

heartburn increases. Tums, Pepto-Bismol not effective.

Oct. 8th

See primary doctor ____________ who suggests I start a 14 day course of Prilosec. Pain and heartburn improve. Feeling of lump when swallowing gets

better, but still present.

Weekend of Oct. 25th,

Tightness in chest and pain with swallowing starts within 3 days of stopping Prilosec. Lump becomes more noticeable. Start a BRAT diet and remove all

caffeine. Start experiencing loss of sleep waking up with pain or discomfort. Restart Prilosec.

Nov. 10

Return to PCP. Start Protonix and Carafate. Told to wait 2 weeks and if not resolved see specialist. Raise bed, start supplementing with Boost.

Weekend Nov. 13

Burning in stomach improves but swallowing worse. Start liquid diet as swallowing becomes too painful – weight loss reaches 10 lbs.

Nov. 24

See Dr. C_____________ .Swallow Study and Endoscopy. Suggests Nexium which is denied by insurance company so I went back on Prilosec, twice daily.

Nov. 24

Swallow study – no structural abnormalities seen. See report.

Nov. 26

Endoscopy done at _______ by Dr. C. No evidence of Barrett's esophagus, esophagitis, a hiatus hernia, rings or bands, or stenosis in the esophagus found.

Gastritis noted. See report.

Nov. 27-Present

Continuing with Prilosec and Zantac. Pain in chest constant, worsens with swallowing even saliva. Regurgitation is continuous. Unable to eat solids. Eating 6

oz. of yogurt or drinking liquid such as Boost takes 2+ hours. Loosing 3-4 lbs a week even with nutritional support from _____________ at _________. Total

weight loss 34 lbs in 10 weeks.

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Can purchase at many stores for less than $10.00. Organize medical records, PT exercises, appointment notes, practitioner contact information, medication history, surgery history, flyers about EDS, and future appointments.

Contact Information

• Shani Weber SASOEDS@gmail.com

• Heather Butler-Pierce Heatherbutlerpierce@yahoo.com

Thank you and Gentle Hugs ~ Shani and Heather