Managing health care is not an easy task for any of us. Coping with a life-threatening illness makes it even more difficult and stressful. There are actions, however, that you can take to get the best care from your health care providers. The number one point to recognize is that you are the ‘captain’ of your health care team. Your doctors, nurses, LHIN case managers, Evergreen Hospice staff and client volunteers, therapists, pharmacists and family members all ‘work’ for you. As team captain, you need to follow the treatments prescribed, but the team can do its best for you when you are an active player. The following suggestions will help you get the most from the health-care system.
Make your visits with health-care providers count!
Part One – Before your visit:
Want answers? Ask questions.
- Plan your questions in advance. When you think of a question, write it down in a notebook
- Decide which questions are most important. This helps organize your thoughts ahead of time
- Start a symptoms ‘diary’ to record your symptoms, outlining any pattern regarding the timing or worsening of your condition, and/or side effects of medications
- Call ahead to be sure your diagnostics and/or any test results are there and ready for viewing
- Call to confirm your appointment before heading out
- Take someone with you to all appointments. It helps to have two people listening
- Interpreting what is being said. The other person can remind you of issues of concern that you may have forgotten in the tension of the interaction with your provider
Take charge of your team and keep it connected – when you build relationships, you build your information file.
During your visit:
- Bring your Personal Health Care folder (including your notebook) to all appointments.
- Ask your questions. Don’t be shy. When it’s your health, there are no dumb questions. Don’t be afraid to ask “Why?”
- Write down the answers. If you don’t have time during the appointment, make notes
- Immediately afterward while the information is still fresh in your mind.
- Consider bringing a small, portable tape recorder with you and asking if you can record what is being said.
Ask questions such as:
- What exactly is my diagnosis?
- Why are you prescribing this treatment?
- What are the treatment options?
- What are the possible side effects of treatments?
- What are the risks and/or benefits to the treatment?
- Why is it important for me to do this?
- Will I need to buy any equipment or supplies?
If you need a test, ask:
- How is the test done?
- How will it feel?
- What do I need to do to get ready for it?
- How will I get the results (and when)?
- If you do not understand the answers, speak up. Often ‘medical jargon’ can get in the way of our understanding. If you don’t know the meaning of a word, ask until you do.
- It is important to understand what will be happening in your treatment. Ask questions to make sure you understand
- Studies show that people who understand health instructions make fewer mistakes when they take their medicine or prepare for a medical procedure. They may also be able to better manage their health condition
- Let your doctor know if you are concerned about being able to follow your treatment plan for whatever reasons
- If you have researched a topic, share the information with your doctor
- Bring a current list of any medications and/or vitamin supplements and their dosages. Note any prescription refills you may need
- List any homeopathic or naturopathic therapies— they might contain chemicals that may conflict with pharmaceuticals
- Consider bringing all of your medicines and supplements to your doctor visits so you can talk about them and discuss any problems
- Tell your doctor about any allergies and adverse reactions you have had to medicines
- If you think a prescribed medicine may be causing a problem, mention it. There may be something different you can try
- When your doctor writes a prescription for you, make sure you can read it. If you cannot read your doctor’s handwriting, your pharmacist might not be able to either
You should leave the office knowing how and when to manage any new medication. Ask for information about prescriptions in terms you can understand—both when they are prescribed and when you get them:
- What is the medicine for?
- How am I supposed to take it and for how long?
- What side effects are likely? What do I do if they occur?
- Is this medicine safe to take with other medicines or dietary supplements I am taking?
- What food, drink, or activities should I avoid while taking this medicine?
- Tell your health care providers everything about how you are feeling and what you are thinking
- Often we will say what we think they want to hear, or say we’re doing better than we really are
- Talk about what is changing, what is better, and what is worse
- Speak up about the amount of pain you are in
- Talk about other conditions you may have
- Be honest about your health habits, whether or not you smoke, what you drink and eat, and how much you exercise. If you miss taking your medications, say so
- Tell them if you have been feeling depressed or anxious
- Ask for any patient education handouts and/or medically valid internet resources
- Know when you should return for a follow-up visit and/or what factors should prompt you to call and make a follow-up appointment
- Be assertive, but polite and positive/empathetic/ appreciative
Part Two – After your Appointment:
- Call back if you are unclear about any instructions or have more questions. Have your records ready. Take notes in your Personal Health Care folder: write down the date, the name of the person you’re talking to, and the details of the conversation. Especially note if the information has changed since the last time you spoke with someone
- Call as soon as you see a change in your condition. If you notice something on Wednesday, call then. Don’t wait until 4 p.m. on Friday when the pain is unbearable and everyone has gone for the weekend
Talk to the pharmacist: When you pick up your medicine from the pharmacy, ask:
- Is this the medicine that my doctor prescribed?
- If you have any questions about the directions for using the prescription, ask. For example, ask if “four times daily” means taking a dose every 6 hours around the clock or just during regular waking hours
- Ask your pharmacist for the best device to measure your liquid medicine. For example, many people use household teaspoons, which often do not hold a true teaspoon of liquid. Special devices, like marked syringes, help people measure the right dose
- Ask for written information about the side effects your medicine could cause. If you know what might happen, you will be better prepared if it does or if something unexpected happens
There are other times when you should follow up on your care:
- If you experience any side effects or other problems with your medications
- If your symptoms get worse
- To get results of any tests you’ve had. Do not assume that no news is good news
- To ask about test results you do not understan
Take someone with you to all appointments:
- It’s hard to keep track of all the advice you get, and often there is a lot you need to do to follow up. Bring a family member or friend. It can make you feel more comfortable and more confident, and help you have a better conversation with your health care provider
- Your family member or friend, who knows what your day-to-day life is like, can help you follow through with your doctor’s advice and manage your care once you leave the office
Take charge of your team and keep it connected – when you build relationships, you build your information file:
- Get to know your health care team – know everyone involved and what the role of each one is.
- Know what skills each member brings to the team
- Know how to reach members of the team when there’s an emergency – who would I call and what would I expect?
- Tell each health care provider about other health care providers you are seeing. Each player on the team needs to know the big picture. You are the only person who knows everything that is going on with you. Your job is to keep the team informed
Keep your Personal Health Care folder up-to-date and take it with you to all appointments. Include:
- Health card
- Insurance information
- A list of doctors, including specialists, and their phone numbers
- A list of all health care providers on your team and their phone numbers, including personal extensions
- A list of medicines and dosages
- Information about your medical conditions both treated and untreated, past illnesses, treatments, surgeries, reactions
- Notes from all conversations, face-to-face and phone
- Copies of all documents you mail
Let everyone on the team know what is working for you and what is not. Talk to each one of them openly. If you are not comfortable with someone and feel that you can’t talk to him or her about your health care needs, or you are not getting the care and attention you need, you are better off making a change—no matter how difficult it may seem.
Make sure health care providers receive your phone messages.
- Know your LHIN’s main number who would coordinate care in your “community” and also the extension number of your LHIN case coordinator
- If you have an emergency or a burning question for a health care provider, press ‘0’ when you call the LHIN, to speak to a live person during office (open from 8:30 am to 8:30 pm). Voice mails are not always received in time to respond
- If you have to cancel an appointment with one service provider because of another appointment, avoid voice mail. Make sure you talk directly to the people who will cancel that first appointment