Effective SelfEffective Self--Advocacy: Advocacy...

1

Effective SelfEffective Self--Advocacy: Advocacy: Conversations on Being a Powerful PatientConversations on Being a Powerful Patient

Aplastic Anemia & MDS International FoundationAplastic Anemia & MDS International FoundationPatient & Family Conference 2010Patient & Family Conference 2010

Washington, DCWashington, DCWashington, DCWashington, DCJuly 12, 2010July 12, 2010

Janet OheneJanet Ohene--Frempong, MSFrempong, MSJ O Frempong & Associates, Inc.J O Frempong & Associates, Inc.

Clear Language GroupClear Language GroupPlain Language and Cross Cultural CommunicationsPlain Language and Cross Cultural Communications

©J O Frempong & Associates, Inc. - Clear Language Group

Self Advocacy

When you have aplastic anemia, MDS or PNHthere are times when you can feel UP…

Self Advocacy

…and there are times when you may feel DOWN

2

Self Advocacy

One worthy goal is to find ways to do what YOU can do to feel as physically and emotionally well as possible.

This can be somewhat of a climb, but there are, indeed, things thatYOU can do…

…and there is much help along the way.

Self Advocacy

A Few Barriers That Can Get in the WayA Few Barriers That Can Get in the Way(…(…and How to Deal with Them)and How to Deal with Them)

Potential Barriers to Getting Good CarePotential Barriers to Getting Good CareThat Have to Do with That Have to Do with the Healthcare Systemthe Healthcare System

Self Advocacy

First, be aware of certain SYSTEM barriers that people can encounter:

In some parts of the country, the shortage of doctors who have expertisein treating bone marrow failure diseases

The shortage of good interpreter services, in some parts of the country

The large amount of confusing paperwork required of both patients and providers

The small amount of time that providers are sometimes given to interact with their patients.

The cost of good health care

3

Potential Barriers to Getting Good CarePotential Barriers to Getting Good CareThat Have to Do with That Have to Do with Provider Skills and AttitudesProvider Skills and Attitudes

Self Advocacy

Also, be aware of potential PROVIDER barriers to working well with providers:

Not having the skill to make people feel respected and valued, regardless of how rushed the provider may be

Not having the skill to translate terms and concepts into language and information that even people who are not strong readers can understand

Not knowing how to work effectively with people from different cultures

Not being aware of how to find out if a patient truly understands or agrees with directives, even when the patient seems to

Having preconceived, and possibly erroneous, opinions about certain patients, and lowering treatment goals accordingly

Potential Barriers to Getting Good CarePotential Barriers to Getting Good CareThat Have to Do with That Have to Do with Patients, ThemselvesPatients, Themselves

Self Advocacy

Finally, be aware of potential PATIENT barriers to working well with providers:

Having opinions and beliefs that create distrust of certain or most providers

Being afraid, unwilling or unable to ask questions

Being afraid, unwilling or unable to provide information, offer opinions or make suggestions

Seeming to be uninterested in one’s own care or the care of one’s child

Being too busy, too tired or too confused to gather, read, understand and organize medical information

Missing scheduled appointments

7 Tips for Getting Good Care7 Tips for Getting Good Carein Spite of Various Barriersin Spite of Various Barriers

Self Advocacy

Tip 1: Find and keep good specialized care.

Tip 2: Know your providers and what they do.

Tip 3: Work well with your providersTip 3: Work well with your providers.

Tip 4: Gather and organize information.

Tip 5: Ask questions and get answers.

Tip 6: Get the extra support you may need from others.

Tip 7: Take good care of yourself.

4

Self Advocacy

Tip 1: Tip 1: Find and keep good specialized careFind and keep good specialized care

Tip 1: Find and keep good specialized careTip 1: Find and keep good specialized care

Self Advocacy

Why this is important:

They have more experience. They often have taken care of a larger number of people with your condition than non-specialists.

They keep up to date.Specialists keep up with research and new developments in the field.

So, they are more likely to give you the best medical care.They are able to make better decisions about:

- precisely what your medical problem is- different options for treating it- handling problems as they arise

Plan to get care from a specialist.- This should be a hematologist or an oncologist.

Get your care at a teaching hospital, if possible. - The hematology/oncology department at a hospital affiliated with

the closest medical school is a good place to get treated.

Self Advocacy

Tip 1: Tip 1: Find and keep good specialized careFind and keep good specialized care

- The doctors there are in a research and teaching setting. So, they may be especially up-to-date in treating rare conditions.

Expect your primary care doctor to refer you to a specialist.- Most patients with aplastic anemia, MDS or PNH are referred to

a specialist by their primary care doctor.

5

Tip 1: Find and keep good specialized careTip 1: Find and keep good specialized careGet involved in the search for good care, if you want to.If you ever need to play a role in finding a good specialist, contact the Aplastic Anemia & Myelodysplastic Syndromes International Foundation (AA-MDSIF) for help.

- Ask about where there are teaching hospitals affiliated with medical

Self Advocacy

Ask about where there are teaching hospitals affiliated with medical universities in your area. Call their hematology/oncology department.

- Ask if you can be put in touch with others who have your condition.Talk to them and ask who they recommend.

- Ask how to go about finding 2 specialists so that you can get a first and second opinion on how you can be treated.

When a second opinion can help, or is needed:When you want to be sure about the diagnosis a physician makes. When you want to be sure about a treatment that a physician recommendsWhen a physician recommends surgery. When you are going to have elective surgery and your insurance company requires a second opinion

Self Advocacy


requires a second opinionWhen a physician, himself or herself, recommends that you get a second opinion

NoteIt is OK to do this. Many people do. Don’t’ be afraid to tell your first doctor about your need to seek a second opinion; your first doctor should not be offended.Check with your health insurance to make sure the visit is covered. Find out if you need to get written permission to get a second opinion.


Make sure that all providers work well together, see each other as allies, and share information.

If a provider is really not a good fit for you, switch if you can.

Self Advocacy

6

Tip 1: Find and keep good specialized careTip 1: Find and keep good specialized careFor patients and families who want more information on:

finding a doctorgetting second opinions

You can contact Leigh Clark, AA&MDSIF Patient Educator:

Self Advocacy

You can contact Leigh Clark, AA&MDSIF Patient Educator:Call her at: 800 747-2820 orOr email her at [email protected]

Current as of July 2010

Self Advocacy

Tip 2: Tip 2: Get to know your providers and what they doGet to know your providers and what they do

Tip 2: Get to know your providers and what they doTip 2: Get to know your providers and what they do

Self Advocacy


You are going to have a long-term relationship with your providers. Therefore you should know them by name and what they do.

You will be making decisions together. Y id i t k l l ith t k i t t d i iYour providers are going to work closely with you to make very important decisions. You should have mutual trust that comes from knowing each other well.

Providers are also human.

Everyone likes to be recognized and called by their correct name.

7

Know the different people who take care of you and what they do. Get an idea of how they can be of help if you have a problem or a question.

Your Main Healthcare Team (Outpatient and Some Inpatient Care)- Your primary specialist - A hematologist or oncologist- Other team members - A team of different healthcare professionals

Self Advocacy


Other team members A team of different healthcare professionals who help to take care of you

Your Inpatient Healthcare Team (Only Inpatient Care)- Healthcare professionals that you will only see when you are

hospitalized

Medical Consultants, as Needed- Other physicians who are called in to give advice on specific issues,

as needed

Be aware of who is on your “Main Healthcare Team”.

Your Primary Specialist- An Attending Physician who is a hematologist or oncologist- The one person who is ultimately in charge of your care

Other Members of the Healthcare Team

Self Advocacy


Other Members of the Healthcare Team- Other Attending Physicians (Doctors who supervise the medical team)- Fellows (Doctors training to become sub-specialists)- Residents (Doctors training to become specialists)- Medical Students (Students studying to become doctors)- Nurse Specialists or Nurse Practitioners (Nurses who tend to be

specialists in specific conditions)- Staff Nurses (General nurses)- Social workers- Program coordinators and research staff

Be aware of the “Medical Consultants” whom your doctor may ask to see you.

For example:An infectious disease doctorA surgeonAn interventional radiologist

Self Advocacy


gA psychologist or psychiatrist

Be aware of others who you may interact with or who may be involved in your carefrom time to time:

Receptionists and clerks (both on outpatient and on inpatient floors)Phlebotomists (who draw blood) and IV specialistsRadiology (x-ray) techniciansRespiratory therapistsChild life therapists (when the patient is a child)

8

Tip 2: Get to know your providers and what they doTip 2: Get to know your providers and what they doBe aware of who is on your “Inpatient Healthcare Team”.

These are people who will interact with you when you are hospitalized

Physicians and Medical Students- Residents- Medical Students

Self Advocacy

Nurses and Nursing Students- The Head Nurse or Nurse Manager (in charge of nursing on the floor)- The Charge Nurse - (in charge of the nurses on a particular shift) - Staff Nurses (focused on taking care of patients who are assigned to them)- Student nurses

NoteWhen you are in the hospital, your Primary Specialist team will still be involved in your care. This is your main hematologist or oncologist.

Politely find out who is who, and who does what:Ask people to write down their names and what they do.Or ask if they can leave their business cards for you to refer to.Find out whom to talk with about:- medical issues

Self Advocacy


ed ca ssues- health insurance- home care- school or job issues- emotional issues

- family issues

Self Advocacy

Tip 3: Tip 3: Learn how to work well with your providersLearn how to work well with your providers

9

Self Advocacy


It allows you to benefit the most from what they have to offer. When you do work well with your providers, it enables them to focus on your condition and to make to best use of the time they spend with you.

It h l k th f th diti d t th bl ti i

Tip 3: Learn how to work well with your providersTip 3: Learn how to work well with your providers

It helps keeps the focus on the condition and not on other problematic issues.When you do not work well with your providers, then YOU become the issue,and not your condition.

Inability to use time well, follow agreed upon instructions, keep appointments, get along with various providers distracts from the actual delivery of care.


10 Steps to Making the Most Out of Your Doctor's VisitAdapted from an article by Jennifer Frank, a Family Physician at University of Wisconsin School of Medicine and Public Health Appleton, WI

Self Advocacy

Some helpful advice…

Adapted fromFrank, Jennifer. How to Talk to Your Doctor: Getting the most out of a short-but-sweet office visit

[Internet]. Version 7. Knol. 2009 Aug 18. Available from: http://knol.google.com/k/jennifer-frank/how-to-talk-to-your-doctor/1sx1wpgiybdpu/4

Tip 3: Learn how to work well with your providersTip 3: Learn how to work well with your providers10 Steps to Making the Most Out of Your Doctor's Visit

1. Identify your agenda. (Think about what you want to accomplish.) - Come prepared. Make good use of the time available.

2. Make a list of your questions and concerns. - Write down the top 3 things you want to discuss. This helps you not to forget.- Add a few other questions to ask, in case there is enough time.

Self Advocacy

Add a few other questions to ask, in case there is enough time.3. Ask for the time you need.

- Do this when you make the appointment. Let them know if you have a special concern.- If there still was not enough time, ask if there is a way to call or email concerns.

4. Be honest and forthcoming. - Share symptoms, no matter how small or embarrassing. (Doctors have heard it all.)

5. Be patient.- Allow time for your doctors to make a diagnosis and decide on a treatment plan.

Adapted from: Frank, Jennifer. How to Talk to Your Doctor: Getting the most out of a short-but-sweet office visit

10


10 Steps to Making the Most Out of Your Doctor's Visit

6. Be nice. - Be polite and respectful of all staff. Establish and maintain cordial relationships.- Show appreciation. It helps.

7. Make sure you understand. Try the Ask Me 3 approach:- What is my main problem, at this point?

Self Advocacy

- What do I need to do?- Why is it important for me to do this?

8. Tell the doctor about barriers. - Don’t be afraid to politely disagree or complain.- Don’t be afraid to admit that you don’t understand or don’t read so well.

9. Follow up as directed. - Follow instructions. Keep scheduled appointments.

10. Be the coach.- See yourself as someone who can to take an active role in your own care.

Adapted from: Frank, Jennifer. How to Talk to Your Doctor: Getting the most out of a short-but-sweet office visit

Self Advocacy

Be aware that time may be limitedBe aware that time may be limited

Self Advocacy

Plan ahead to make the best Plan ahead to make the best use of the time you haveuse of the time you have

11

Self Advocacy

Develop and use good people skillsDevelop and use good people skills

When providers seem rushedWhen providers seem rushed

Try a little tendernessTry a little tenderness


Self Advocacy

Advice from a focus group discussion between people who go to public health center for their care:

Older woman:“Don’t end up getting really sick just you don’t want to deal with peopleDon t end up getting really sick just you don t want to deal with peoplewho aren’t nice. If one person isn’t helpful, find one who is.”

Older man“Do your part. I found out that if you are nice and act like you care about your own health, people tend to treat you a little better. It shouldn’t matter, but it does.”

Tip 4: Tip 4: Gather and organize informationGather and organize information

Self Advocacy

12

Self Advocacy


The old saying that “knowledge is power” is true.Having information you need, at hand, helps you to know the full story of what has happened. This helps you in making decisions about how to move forward.

Tip 4: Gather and organize informationTip 4: Gather and organize information

Gathering and organizing helps you to do YOUR part in getting good care.Having information handy takes some work, but it is another way for youand your family to be actively involved in your care.

It commands respect (in a good way).Providers are likely to pay even more attention to you if they know that you are gathering information and keeping track of things. They may come to youbetter prepared if they know that YOU are well-prepared.

AccumulateAccumulate

Self Advocacy

- Information about your condition- Medical records – especially blood count reports- Treatment Information- Lab Results and Transfusions- Important Contact Numbers- Health insurance and billing information

GatherGather

Self Advocacy

From the InternetFrom Books and Brochures

From WebinarsFrom Newspapers

From Meetings and Seminars

(Ask for a list of reliable sites)

13

Self Advocacy

OrganizeOrganize


Self Advocacy

Create a notebook.Try to keep all information about your care in one place.Consider using a 3-ring binder to make information easy to find and use.Keep it where you can easily find and use it.Take the binder with you to your appointments.Get a 3 hold puncher and some dividers to help keep things organizedGet a 3 hold puncher and some dividers to help keep things organized.Consider including the following sections:

- Health Information- Treatment Information- Lab Results and Transfusions- Important Numbers

Or keep some information electronically.Some people may refer to keep certain information electronically to make itmore portable and accessible, for example: on a laptop, tablet, or smart phone


Self Advocacy

Include Health Information.Write down the dates of upcoming appointments.Make and keep lists of any questions you have.Keep any notes that you take as you get your questions answered. Keep any instructions from your doctors.Make and keep a list of your medicines and any herbs, supplements or over-the-counter medicines you are taking.File any new information you find out about your condition.Keep notes on how you are feeling, both physically and emotionally.Consider keeping a “Health Diary”.

14


Self Advocacy

Include Treatment Information.List the treatments you are on and ones you have been on.Collect and keep information about new treatments and research updates.Make and keep a list of medicines and any side effects.


Self Advocacy

Include Lab Results and Transfusions.Keep copies of your lab results.

- Be sure to ask for copies of all important lab results.- Consider making a chart to more easily keep track of

the results.t e esu tsSome people use the computer to make a chart.• You can use an EXCEL spreadsheet • Or you can use an MS Word table

Write down the dates of your blood tests. Write down the dates of your transfusions.


Self Advocacy

Include Important Numbers.Keep a list of:

The names and numbers of your doctors and specialistsThe names and numbers of your social workersThe numbers for your health insurance companyContact information about research studiesThe names and numbers of other patients

15

Tip 5: Tip 5: Ask questions and get answersAsk questions and get answers

Self Advocacy


Self Advocacy


Your health is important; asking questions means you care.

Medical care for serious conditions can be very complex. So, it is expected that patients will ask questions.

You cannot be expected to make the right decisions or follow the care plan, if you do not understand the issues involved.

Providers are impressed by patients who pay attention and ask good questions.They tend to give them more information.


Self Advocacy

Note: - Have a list of questions. You can ask a family member or a friend to help you make a list.

- Bring someone to help you ask, listen and write, if you want to.Take notes or audiotape the session It tends to encourage providers to think- Take notes, or audiotape the session. It tends to encourage providers to think clearly about what they say.

16

Tip 5: Ask questions and get answersTip 5: Ask questions and get answersSelf Advocacy

The special importance of asking questions:

In a series of studies of patients with different conditions (peptic ulcer disease,diabetes and hypertension), patients were divided into 2 groups.

Here’s what the researchers did:

In group #1In group #1(During the 20 minutes right before seeing the doctor, a medical assistant:

Reviewed the patient’s medical record with each patient.Explained the treatment for the patient’s medical condition.Encouraged the patient to ask questions about his or her care.Encouraged each patient to discuss treatment decisions with each doctor.

In group #2The medical assistant just let the patients wait and be seen by the doctor, as usual.


Here’s what they found:

Patients in group #1 vs. patients in group #2The patients in group #1:

Were significantly more active in the conversation with the doctor.Were much more assertive.Elicited (got) twice the number of factual statements from the doctor.Reported significantly fewer physical limitations in the weeks that followed the visit.Reported less limitation on their ability to work and perform important social roles.


Here’s what they found:

In addition:The more active they were in the visit (talking more, asking more questions, being more assertive), the better was their reported health later.Patients seemed to like this new role, for they expressed a significantly stronger preference for active involvement in medical decision making.The hypertensive patients that received this extra encouragement:

- Had improved quality of life.- Had improved functional status ratings (ratings of how well they were doing).- Has lowered blood pressure measured during the follow-up period.

The same held true for patients with diabetes and with breast cancer.From:

Debra L. Roter and Judith A. HallDoctors Talking with Patients / Patients Talking with Doctors:Improving Communication in Medical Visits, 2006, pp. 171-172,

17


Categories of issues that you can ask questions about:

About What Your Medical Problem Is (Also Called the Diagnosis)

About What is Causing the Medical Problem (Also Called the Etiology pronounced EE tee AH lo gee)(Also Called the Etiology – pronounced EE-tee-AH-lo-gee)

About How Serious Your Medical Problem Is and the Likely Outcome (Also Called the Prognosis)

About How Providers Will Care for You(Also Called the Treatment)

From: Debra L. Roter and Judith A. HallDoctors Talking with Patients / Patients Talking with Doctors:Improving Communication in Medical Visits, 2006, pp. 171-172,


Categories of issues that you can ask questions about:

About Tests You May Need to Have(Needed to Find Out What to Do)

About Your Medications(For each one prescribed(For each one prescribed…_

About Other Things You Can Do To Get and Stay Well (Sometimes Called Lifestyle Changes)

About How You Can Prevent Problems (Also Called Prevention)

From: Debra L. Roter and Judith A. HallDoctors Talking with Patients / Patients Talking with Doctors:Improving Communication in Medical Visits, 2006, pp. 171-172,


Send for the AAMDS Foundation to receive a guide for your particular condition.

Each guide has a sheet that is designed so you can tear it out and take it with youto your doctor’s appointments.

Your Guide to Understanding Aplastic Anemia- Has “11 Good Questions to Ask Your Doctor”

Your Guide to Understanding MDS (Myelodysplastic Syndromes)- Has “15 Good Questions to Ask Your Doctor”

Your Guide to Understanding PNH (Paroxysmal Nocturnal Hemoglobinuria)- Has “13 Good Questions to Ask Your Doctor”

18

Self Advocacy

Tip 6: Tip 6: Find the support you needFind the support you need

Self Advocacy

Self Advocacy


These conditions can be demanding - both physically and emotionally.Having any of these conditions can be overwhelming for most people.It is important to be able get help taking care of things when you don’t feel up to doing so yourself. It can help you feel better if you lighten your load.

Tip 6: Find the support you needTip 6: Find the support you need

People want to help, and you can give them a chance to do so.Friends and family rally around, not out of pity, but because they want to lend a hand. When you allow someone to help - and let them know what would help -it is also an act of friendship. It is a gentle gift to allow someone to help you.

Professional help is also available, and you are entitled to it.In addition to family and friends, there are also professionals who are trained to provide support. The social worker on your healthcare team can help you find support in handling with a number of important issues.

19

Self Advocacy

Self Advocacy


Self Advocacy

Find ways to get and keep support when you need itDifferent things will work for different people. Here are some suggestionsfrom the AAMDS Guide. Think about what kinds of things might work for you.

___ Use some conversation starters that will make it easier to ask for help.___ Keep a checklist to show people when they ask what they can do.___ Keep in close touch with your family. ___ Keep in close touch with your friends.___ Read all you can about your disease to see what you can do to manage it.___ Rely on your healthcare team for support.___ Talk to a member of the clergy.___ Talk with a counselor.___ Join a support group to talk with others who have the same condition.___ Join an online chat group with people who have your condition.

20


Self Advocacy

Find ways to get and keep support when you need it

___ Learn ways to keep the people in your life informed about how you are doing, when you don’t have the energy to do it yourself.

___ Learn ways to keep friendly lines of communication open with people. For example, learn:

- How to keep family members from feeling left out- Ways to respond to your children or grandchildren who may be having a hard time adjusting to your illness

- Things you can say and do to stay connected with family and friends when your energy is low

- How you can make people feel comfortable when you think they may be afraid to ask questions


Self Advocacy

Find ways to get and keep support when you need it___ Last, but not least, you can contact the patient educator at AA&MDSIF to:

- Get connected with other people who have your condition.- Get support from their patient educators.- Order their free booklets on your condition.

Tip 7: Tip 7: Take care of your needsTake care of your needs

Self Advocacy

21

Self Advocacy


It is good for you physical health. Eating right, getting enough rest and minimizing stress can make you feel better than you would if you didn’t take good care of yourself.

Tip 7: Take care of your own needsTip 7: Take care of your own needs

y y g y

It is good for your mental health.Many people do not like feeling helpless. So it is good to know that there are things that you can do to stay as healthy as possible.

You are likely to gain a greater sense of self-confidence from doing YOUR part, rather than just having OTHER people do things for you.


Self Advocacy

Ask you doctor how much exercise is right for you.


Self Advocacy

Get plenty of sleep.

22


Self Advocacy

Find ways to cope with fatigue.


Self Advocacy

Eat well.


Self Advocacy

Plan ahead when traveling.

23


Self Advocacy

Find time to have fun.


Self Advocacy

Add some humor to your life and laugh.


Self Advocacy

Learn some methods of lowering stress.

Progressive Muscle RelaxationProgressive Muscle Relaxation

Guided ImageryGuided Imagery

Deep BreathingDeep Breathing

24


Self Advocacy

Know how to get help when you’re feeling down.

Self Advocacy

Tip 7: Take care of your own needsTip 7: Take care of your own needsSeek peace in whatever wayworks for you…

Once Again…Once Again…7 Tips for Getting Good Care7 Tips for Getting Good Care

Self Advocacy

Tip 1: Find and keep good specialized care.

Tip 2: Know your providers and what they do.

Tip 3: Work well with your providersTip 3: Work well with your providers.

Tip 4: Gather and organize information.

Tip 5: Ask questions and get answers.

Tip 6: Get the extra support you may need from others.

Tip 7: Take good care of yourself.

25

Self Advocacy

A closing perspective…Better and easier treatments are being researched and developed.

You CAN take steps that will help you to get the best out of what the medical system has to offer.

No matter the ultimate outcomes of your care, you willwant to feel that you have done the very best for yourself or for your child.

Effective SelfEffective Self--Advocacy: Advocacy...

Documents

Transcript of Effective SelfEffective Self--Advocacy: Advocacy...