Below are some tips to commonly asked questions that will help you become a responsible partner in your care.
What do I need to know about my medications?
As a patient, you have both the right and the responsibility to understand the medications you take. Your physician, pharmacist and nurse can teach you about medicines. There are also resources you can use to learn on your own. Below are some key questions to ask:
- What medications are known to be useful for treating my condition?
- What is the expected benefit from taking this particular medication?
- How will I know if the medication is working?
- How often should I take it?
- What do I do if I miss a dose?
- Do I need to take this medicine with food?
- Can I eat and drink anything I want?
- What side effects are most common and how are they managed if they occur?
- Which side effects should I call my doctor about?
- How long will I take the medicine before I am re-evaluated?
- If I choose not to take this medicine, what other choices do I have?
Medication problems caused by interactions between medications are more likely to occur when:
- you are seeing several doctors and do not inform each of what medications the others are prescribing.
- you have your prescriptions filled at more than one pharmacy. Pharmacists are very skilled at alerting physicians to potential interactions. Fill all your prescriptions at one location so the pharmacist can evaluate the total picture of your medicines.
- you take over the counter or herbal remedies without discussing potential interactions with your physician or pharmacist.
Providence St. Peter Hospital offers a medication record form you can print and use to keep track of medicines you take. This record is also very useful for doctor appointments.
If you decide to stop a medication, it is advised that you speak with your doctor because some medicines can cause unpleasant side effects or complications if they are stopped abruptly rather than gradually tapered.
To carry out your own research on medications, visit Medline Plus - Drug Information
How can I make the most out of my doctor appointments?
Doctor appointments are usually about fifteen minutes unless it is an initial visit or a special procedure. Patients who organize themselves for their visits are likely to be more satisfied. Here are some suggested steps (adapted from work done by the Bayer Institute of Health Care Communication) to help you organize for your health care appointments.
 Step 1: Plan
Think about what you want to tell your doctor and what you want to learn from your doctor. Write a list and number the most important items. Use a medication record form such as the one offered by the Bayer Institute for Health Care Communication to summarize all the information about your medicines. If it is a first visit with a new doctor you may want to make a brief written list of your history. List all major illnesses, hospitalizations, studies such as MRI or CAT Scan, treatments tried and the result, and also the symptoms of your current complaint.
To describe your symptoms, identify where you feel it, when it started, how often it is present, how intense the discomfort or pain feels, what makes it better or worse, and be prepared to be descriptive about what any pain is like: sharp, dull, sore, burning, stabbing, aching, pulsing, cramping, etc. Be ready to talk about the key events without being overly detailed. Though your doctor needs complete information, he or she is also challenged to work within a time frame. Your doctor will appreciate whatever you can do to provide a clear, well organized summary.
Step 2: Set the goal
Begin the visit by telling your doctor what you want to talk about during the visit and what you hope to learn.
Step 3: Exchange information
Tell the doctor what symptoms you are experiencing and ask questions.
Step 4: Participate
Discuss all the different ways of handling your health problem with your doctor. Make sure you understand the pros and cons about each choice.
Step 5: Agreement
After you have weighed the choices, work out an agreement with your doctor about a treatment plan you are willing to live with. If you and the doctor are in disagreement it is your right to seek a second opinion. Make sure you understand the potential risks of not following the doctor’s plan.
Step 6: Summarize
Finish the appointment by going over the plan and talk about what you will do to take care of your problem as well as anything the doctor has agreed to due as a follow-up to the appointment. Make notes if you need to or make an audio tape recording so you can refer to it later.
Resources
Medline Plus-Patient Issues lists a variety of patient resources.
What kind of emotional support for my illness can I find on the Internet?
Do you want to talk to others facing the challenge of illness? Do you have a relatively rare illness? You are no longer alone. You can communicate with people all over the world that have the same condition. The Internet offers a tremendous amount of health information but it also offers a unique opportunity for support. Whether your illness is rare or common, you can connect to others with similar experiences at all hours, from the privacy of your own home or at the public library.
Types of Internet support:
- List serves--you subscribe to an e-mail list. Whenever someone on the list writes on a topic (called a "thread") all subscribers receive the post as e-mail. Sometimes private e-mail exchanges develop from discussions. Some lists are moderated or monitored by a list owner who makes sure the conversation stays kind and on the list topic. Some lists are not moderated.
- Message boards--anyone can go to a message board and ask a question or just express a frustration. Visitors to the board may post a response for everyone to see or privately e-mail you. Many message boards are visited by a group of regulars who function as a warm support group.
- Chat rooms--like a message board except that the conversation is live, in what is called "real time" and the fastest typist gets to say the most. Sometimes chat rooms have scheduled appearances from experts.
- Personal web sites--many people are now developing personal websites. In some cases persons challenged by chronic illness provide useful links, personal stories and a space for others with the illness to contribute.
- Newsgroups--newsgroups are similar to message boards and list serves. You subscribe to a newsgroup on a topic and then you can choose between reading posts on a message board or posts can be delivered to you as e-mail.
- Penpals--many people have discovered that participation in the places listed above brings about an e-mail friendship.
How do I find these places?
Use a search engine, such as google.com, to take you to topics of interest. A search engine uses terms you enter to go out and look for relevant Internet sites.
A word about safety…The Internet is like a huge city full of strangers. As in any city, many people are kind and trustworthy, but not all. To protect yourself, do not give out personal information such as your full name, address or phone number and make sure all children in your house follow that rule as well.
How do I know the web site I am using for health care information is trustworthy?
Not all sites are created equal, and not all "facts" on the web are true. Anyone can put up a web site and make healthcare claims. The Internet is a fabulous resource for health information, but users must know how to distinguish reliable sites from sites that offer incorrect or dangerous claims. Here are questions to ask to help you evaluate health information sites.
- Who runs the site?
Any good health related site will make it easy for you to determine who runs the site. Hospital, government, university and credible national organizations (e.g. the American Cancer Society) are good places to start. Our library has an excellent set of health care links. Be wary of personal web-sites, sites that ask you to pay for information or sites without a clearly identified sponsor.
- What is the purpose of the site?
Read "about this site" or " mission statement" to see if the goal of the site is to provide unbiased health information. If the site is designed to influence you or sell a product that it claims will cure you, beware.
- Can the information be checked?
Credible sites provide you with the sources of information so that you can check for accuracy or investigate in more depth. Opinions or advice should be clearly separated from fact. Information that is "evidence based" or based on research results should give specific references.
- Who pays for the site?
Watch for sites that are sponsored by drug companies or other corporations. If a corporate sponsor heavily supports a site, it is likely to slant the information offered. Does the site sell advertising? If so, how might those advertisers influence site content?
- How current is the information?
Web sites should be reviewed and updated on a regular basis. This information should be presented on each major page, e.g. " this page last updated on 7/6/00." Be wary of sites that are old or have no evidence of reviews and updates.
- What information about you does the site ask for?
Web sites routinely track the path visitors take through their sites to determine what pages are being used. Retail sites will learn about your buying habits and offer you products that fit your profile. Some sites ask you to "subscribe" or become a "member." Any credible health site will not charge for information, and it will tell you exactly what it will and will not do with information it collects about you. Be certain that you read the fine print and understand any " privacy policy" or similar language on the site. Be cautious about what personal information you offer.
My doctor tells me I am "chronic." What does that mean?
Illnesses are generally described as "acute" or "chronic." The table below highlights some key differences.
(Source: bmj.com)
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Differences between acute and chronic illness
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Acute disease
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Chronic disease
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Onset (how it starts)
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Abrupt
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Usually gradual, or as an acute illness that does not go away
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Duration (how long it lasts)
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Limited
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Lengthy, indefinite
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Cause
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Sometimes single
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Usually multiple and may change over time
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Diagnosis
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Usually accurate
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Often uncertain
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Prognosis
(prediction about how severe and how long)
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Usually accurate
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Often uncertain
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Interventions
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Usually effective
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Usefulness uncertain, may be adverse effects
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Outcome
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Cure
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No cure
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Uncertainty
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Minimal
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Pervasive (a great deal)
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Knowledge
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Professionals knowledgeable and patient inexperienced
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Professionals and patients have complementary knowledge.
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Support
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Usually a lot of support comes to the patient.
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The patient has to seek out support and ask for what they need.
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Some tips on managing chronic illness:
- Be an active partner in your care. You know better than anyone does what it is like to live every day with the illness. You carry all the history of what treatment has occurred so far. Develop a relationship with a doctor who treats you as a knowledgeable partner; do not settle for anything less.
- Learn to manage your symptoms. Through trial and error, in partnership with your doctor, discover what works best to manage your symptoms. Pay attention to what makes things worse and what helps. Keep tinkering with different combinations. Realize that illness is a full of changes and what works great today may have to be changed tomorrow.
- Discover what helps you to keep going. Chronic illness is a huge challenge, never before has it been so important to take good care of yourself. Find out what soothes you, what feels replenishing, what helps the pain and discomfort, what lifts your mood. Develop your own list of " healing activities, people and places." Each person has to make their own list, but here are a few examples:
- Listen to music
- Write in a journal
- Volunteer
- Sit outside at night
- Look at photographs
- Take walks with your dog
- Set short-term plans for fun
- Talk to others with chronic illness. People who are having similar challenges can be a great source of support and strength. They really understand in a way others may not. Look for support groups connected to hospitals, clinics on the Internet or connected to organizations for the particular illness.
- You are more than an illness. You are a person with an illness; the illness is not all of who you are. Realize that "healthy" and "healing" can be defined by you. It is possible to have a chronic illness and be healthy. Bernie Siegel, a physician who has written several books says, "True good health is the ability to do without it."
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