Effective SelfSelf-Advocacy: Conversations on Being a Powerful Patient Aplastic Anemia & MDS International Foundation Patient & Family Conference 2010 Washington, DC July 12, 2010 Janet Ohene Ohene--Frempong, MS J O Frempong & Associates, Inc. Clear Language Group Plain Language and Cross Cultural Communications
©J O Frempong & Associates, Inc. - Clear Language Group
Self Advocacy When you have aplastic anemia, MDS or PNH there are times when you can feel UP…
Self Advocacy …and there are times when you may feel DOWN
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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 that YOU can do… …and there is much help along the way.
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A Few Barriers That Can Get in the Way (…and How to Deal with Them)
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Potential Barriers to Getting Good Care That Have to Do with the Healthcare System First, be aware of certain SYSTEM barriers that people can encounter:
In some parts of the country, the shortage of doctors who have expertise in 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
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Potential Barriers to Getting Good Care That Have to Do with Provider Skills and Attitudes 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
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Potential Barriers to Getting Good Care That Have to Do with Patients, Themselves 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
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7 Tips for Getting Good Care in Spite of Various Barriers Tip 1: Find and keep good specialized care. Tip 2: Know your providers and what they do. Tip 3: Work well with your providers 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.
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Tip 1: Find and keep good specialized care
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Tip 1: Find and keep good specialized care 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
Self Advocacy
Tip 1: Find and keep good specialized care
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. - 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.
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Tip 1: Find and keep good specialized care Get 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 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.
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Tip 1: Find and keep good specialized care 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 recommends When a physician recommends surgery. When you are going to have elective surgery and your insurance company requires a second opinion When a physician, himself or herself, recommends that you get a second opinion Note It 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.
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Tip 1: Find and keep good specialized care
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.
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Tip 1: Find and keep good specialized care For patients and families who want more information on: finding a doctor getting second opinions You can contact Leigh Clark, AA&MDSIF Patient Educator: Call her at: 800 747-2820 or Or email her at
[email protected] Current as of July 2010
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Tip 2: Get to know your providers and what they do
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Tip 2: Get to know your providers and what they do Why this is important:
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 Your providers id are going i tto work k closely l l with ith you tto make k very iimportant t td decisions. i i 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.
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Tip 2: Get to know your providers and what they do 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 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
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Tip 2: Get to know your providers and what they do 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 - 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
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Tip 2: Get to know your providers and what they do Be aware of the “Medical Consultants” whom your doctor may ask to see you. For example: An infectious disease doctor A surgeon An interventional radiologist g A psychologist or psychiatrist Be aware of others who you may interact with or who may be involved in your care from time to time: Receptionists and clerks (both on outpatient and on inpatient floors) Phlebotomists (who draw blood) and IV specialists Radiology (x-ray) technicians Respiratory therapists Child life therapists (when the patient is a child)
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Tip 2: Get to know your providers and what they do Be 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
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
Note When you are in the hospital, your Primary Specialist team will still be involved in your care. This is your main hematologist or oncologist.
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Tip 2: Get to know your providers and what they do 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: ed ca issues ssues - medical - health insurance - home care - school or job issues - emotional issues - family issues
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Tip 3: Learn how to work well with your providers
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Tip 3: Learn how to work well with your providers Why this is important:
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 helps h l keeps k the th focus f on the th condition diti and d nott on other th problematic bl ti iissues. 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.
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Tip 3: Learn how to work well with your providers 10 Steps to Making the Most Out of Your Doctor's Visit Adapted from an article by Jennifer Frank, a Family Physician at University of Wisconsin School of Medicine and Public Health Appleton, WI Some helpful advice…
Adapted from Frank, 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
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Tip 3: Learn how to work well with your providers 10 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. 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
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Tip 3: Learn how to work well with your providers 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? - 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
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Be aware that time may be limited
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Plan ahead to make the best use of the time you have
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Develop and use good people skills
When providers seem rushed Try a little tenderness
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Tip 3: Learn how to work well with your providers Advice from a focus group discussion between people who go to public health center for their care: Older woman: “Don’t Don t end up getting really sick just you don don’tt want to deal with people who 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.”
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Tip 4: Gather and organize information
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Tip 4: Gather and organize information Why this is important:
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.
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 you and 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 you better prepared if they know that YOU are well-prepared.
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Accumulate
- Information about your condition - Medical records – especially blood count reports - Treatment Information - Lab Results and Transfusions - Important Contact Numbers - Health insurance and billing information
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Gather
From Books and Brochures
From the Internet (Ask for a list of reliable sites)
From Webinars From Newspapers
From Meetings and Seminars
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Organize
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Tip 4: Gather and organize information 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 organized 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 it more portable and accessible, for example: on a laptop, tablet, or smart phone
Self Advocacy
Tip 4: Gather and organize information 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”.
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Tip 4: Gather and organize information 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.
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Tip 4: Gather and organize information 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 tthe e results. esu ts Some 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.
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Tip 4: Gather and organize information Include Important Numbers. Keep a list of: The names and numbers of your doctors and specialists The names and numbers of your social workers The numbers for your health insurance company Contact information about research studies The names and numbers of other patients
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Tip 5: Ask questions and get answers
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Tip 5: Ask questions and get answers Why this is important:
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.
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Tip 5: Ask questions and get answers 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 notes, or audiotape the session session. It tends to encourage providers to think clearly about what they say.
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Tip 5: Ask questions and get answers 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 #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 #2 The medical assistant just let the patients wait and be seen by the doctor, as usual.
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Tip 5: Ask questions and get answers Here’s what they found: Patients in group #1 vs. patients in group #2 The 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.
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Tip 5: Ask questions and get answers 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. Hall Doctors Talking with Patients / Patients Talking with Doctors: Improving Communication in Medical Visits, 2006, pp. 171-172,
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Tip 5: Ask questions and get answers 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 EE-tee-AH-lo-gee) 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. Hall Doctors Talking with Patients / Patients Talking with Doctors: Improving Communication in Medical Visits, 2006, pp. 171-172,
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Tip 5: Ask questions and get answers 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…_ 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. Hall Doctors Talking with Patients / Patients Talking with Doctors: Improving Communication in Medical Visits, 2006, pp. 171-172,
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Tip 5: Ask questions and get answers 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 you to 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”
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Tip 6: Find the support you need
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Tip 6: Find the support you need Why this is important:
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.
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.
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Tip 6: Find the support you need Find ways to get and keep support when you need it Different things will work for different people. Here are some suggestions from 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.
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Tip 6: Find the support you need 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
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Tip 6: Find the support you need 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.
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Tip 7: Take care of your needs
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Tip 7: Take care of your own needs Why this is important:
It is good for you physical health. Eating right, getting enough rest and minimizing stress can make you g care of yyourself. feel better than yyou would if yyou didn’t take good
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
Tip 7: Take care of your own needs
Ask you doctor how much exercise is right for you.
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Tip 7: Take care of your own needs
Get plenty of sleep.
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Tip 7: Take care of your own needs
Find ways to cope with fatigue.
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Tip 7: Take care of your own needs
Eat well.
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Tip 7: Take care of your own needs
Plan ahead when traveling.
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Tip 7: Take care of your own needs
Find time to have fun.
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Tip 7: Take care of your own needs
Add some humor to your life and laugh.
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Tip 7: Take care of your own needs
Learn some methods of lowering stress. Guided Imagery Progressive Muscle Relaxation Deep Breathing
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Tip 7: Take care of your own needs
Know how to get help when you’re feeling down.
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Tip 7: Take care of your own needs Seek peace in whatever way works for you…
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Once Again… 7 Tips for Getting Good Care Tip 1: Find and keep good specialized care. Tip 2: Know your providers and what they do. Tip 3: Work well with your providers 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.
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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 will want to feel that you have done the very best for yourself or for your child.
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