Dr. You

Communicating your health concerns, symptoms, and needs to healthcare providers is essential for accurate diagnoses and effective treatment plans. This section helps you prepare for and maintain open and honest communication with all providers, no matter how difficult the circumstances may be.

Patient Story – (The story is true; the patient’s and provider’s names have been changed.)

A powerful example of a patient openly sharing difficult information that helped doctors diagnose and treat their life-threatening illness involves Muhammad, a 35-year-old man with AIDS. During an appointment with his primary care doctor, Muhammad candidly expressed feelings of hopelessness, fatigue, and anorexia. He revealed that he had lost motivation to take his medications, believing that his efforts were futile because he was going to die regardless. His partner added observations about his behavior, including isolation and lack of interest in daily activities.

Through further questioning, the doctor uncovered symptoms of clinical depression, such as sadness, sleep disturbances, and recurrent thoughts about death. While these symptoms could have been attributed to the progression of AIDS, the physician recognized that depression was likely exacerbating Muhammad’s physical decline. She explained to him that addressing his depression could improve his ability to fight the disease and encouraged him to try antidepressant medication. Muhammad agreed to begin treatment.

This honest conversation allowed Muhammad’s doctor to identify depression as a critical factor affecting the patient’s health and adherence to HIV treatment. By addressing both the psychological and physical aspects of his condition, Muhammad was able to regain motivation and improve his overall health outcome

Steps to Prepare for Conversations

• Know your medical history: Gather information on past illnesses, surgeries, allergies, and current medications (including dosages and frequency). (Source: Mayo Clinic)
• List symptoms: Write down all symptoms you are experiencing, including when they started, how often they occur, and any factors that make them better or worse.
• Prioritize concerns: Identify your most pressing health issues and focus on addressing them during the appointment.
• Prepare questions: Create a list of questions you would like to ask the doctor.

Examples include:

• What could cause my symptoms?
• What tests do I need, and why?
• What are my treatment options?
• What are the risks and benefits of each treatment?
• What lifestyle changes can I make to improve my health?
• • Consider bringing a companion: A friend or family member can provide support, take notes, and help you remember information.

During the Conversation

• Be clear and concise: Describe your symptoms and concerns accurately, using clear and precise language.
• Speak up: Don’t hesitate to ask questions or express your concerns, no matter how minor.
• Be honest: Share all relevant information, including medications, supplements, and lifestyle habits, even if they are embarrassing or difficult to discuss. Withholding information can hinder accurate diagnosis and treatment.
• Active listening: Pay attention to the doctor’s explanations and ask for clarification if you don’t understand any part of them.
• Take notes: Write down important information, instructions, and recommendations.
• Respectful communication: Treat healthcare providers with respect, even if you disagree with their opinions or recommendations.

Important Considerations

• Medical Jargon: Don’t hesitate to ask the doctor to explain medical terms in simple, understandable language.
• Cultural Sensitivity: If you have cultural beliefs or practices that may impact your healthcare, please discuss them with your doctor.
• Second Opinions: Don’t hesitate to seek a second opinion if you are unsure about a diagnosis or treatment plan.
• Patient Rights: Familiarize yourself with your rights as a patient, including the right to access your medical records and to refuse treatment. (Source: U.S. Department of Health & Human Services)

After the Conversation

• Review notes: Make sure you understand all the information the doctor provides.
• Follow instructions: Adhere to the treatment plan and medication schedule as prescribed.
• Contact the office: Call the doctor’s office if you have any questions or concerns after the appointment.

Talking to Specialists and Surgeons

Visiting a specialist can be a crucial step in managing your health. Here’s what you need to know to make the most of those appointments:

• Referrals: Check with your insurance provider. They may require a referral from your primary care physician before you can see a specialist.
• Preparation is Key: Specialists often review your records beforehand, so they’ll already have some knowledge of your situation.
• Ask Questions: Don’t hesitate to ask the specialist to explain anything you don’t understand. For example, ask:
• “Can you explain this medical condition to me in simple terms?”
• “How might this condition impact my daily life?”
• “Do you have any written materials or trusted websites I can use to learn more?”
• Keep Your Primary Doctor Informed: Ask the specialist to send information about your diagnosis and treatment plan to your primary care physician. This ensures everyone is on the same page. Additionally, please inform your primary doctor about your specialist appointment and discuss how well any recommended treatments or medications are working.

Questions to Ask a Specialist

Consider asking these questions during your appointment:

• What is my diagnosis, explained in a way I can understand?
• What treatment do you recommend, and why? How soon should I start?
• Will you coordinate my care with my primary doctor?
• What are the medical and common names of each treatment option?
• How will each recommended treatment help my specific situation?
• What does each treatment involve (e.g., medications, procedures, lifestyle changes)?
• How will each treatment affect my daily life and activities?
• Does my insurance cover this treatment?
• What will my out-of-pocket costs be?
• What is your experience with this treatment? What are the success rates you’ve seen?
• What is the expected outcome of each treatment option?
• What are the potential risks and side effects associated with each treatment? How can these be managed?
• How soon should treatment start, and how long will it last?
• What would happen if I chose not to have any treatment?

Navigating Surgery

If surgery is recommended, navigate the process by:

1. Choosing a Surgeon

• Begin by verifying with your insurance provider to determine which surgeons are included in your network.
• Credentials and Experience: Research the surgeon’s qualifications, experience, and areas of specialization.
• Referrals: Ask your primary care physician or specialist for recommendations.
• Learn About the Surgery: Gather information about the procedure, recovery process, and potential risks and benefits.

Preparing for Your Appointment

Prepare for your appointment with the surgeon just as you would for any other necessary medical appointment. Please bring a list of questions, your medical history, and a list of any medications you’re currently taking.

Questions to Ask Your Surgeon

• What will be done during the operation?
• Are there any reliable reading materials, videos, or websites that I can review to better understand the procedure? Consider reaching out to reputable medical organizations, such as the Mayo Clinic or the American College of Surgeons, for resources.
• Will I need to stay overnight in the hospital, or is it an outpatient procedure?
• Will I need someone to drive me home after the surgery?
• What is the success rate of this operation? How many times have you performed it?
• What are the common problems or complications that can occur with this surgery?
• What kind of pain or discomfort can I expect after the surgery, and how will it be managed?
• What type of anesthesia will be used? What are the risks and benefits?
• Are there any specific risks associated with this surgery for someone my age or with my medical conditions?
• How long is the expected recovery period? What will it involve (e.g., physical therapy, wound care)?
• When can I expect to return to my normal routine and activities?

Your Hospital Stay: What to Expect and How to Advocate for Yourself

Hospitals can be overwhelming. Here’s how to make your stay safer and more comfortable:

• Choose a Support Person: Before going to the hospital, designate a family member or friend to serve as your advocate. Ensure the hospital staff is aware of this person’s identity and how to reach them.
• Patient Representatives: Many hospitals have patient representatives or advocates who can assist you in navigating the system and addressing any concerns. Determine if your hospital has one and obtain their contact information.
• Know Who’s in Charge: Identify the person responsible for your care when your primary doctor is unavailable.
• Verify Your Information: Double-check your wristband to ensure the information is accurate.
• Medication List: Please bring a current list of your medications and their corresponding dosages. This is crucial for preventing medication errors.
• Be Vigilant About Medications: Pay attention to the medications you are given, including the dosage and the reason for their administration. If anything seems incorrect or you have questions, speak up.
• Hand Hygiene: Don’t hesitate to ask healthcare providers to wash their hands before touching you. This helps prevent hospital-acquired infections.
• Keep a Notepad: Bring a small notepad and a pen to write down questions, concerns, and important information.
• Comfort Items: Consider bringing these items to make your stay more comfortable:
– A robe
– Your own pillow
– Music and headphones
– Earplugs
– A reading light
– Reading material
– Your own toiletries
• Hospital Routine: Learn the hospital’s daily schedule, including the typical times when doctors make rounds. Knowing the routine can help you plan your questions and manage your time.
• Doctors in Training: If you’re in a teaching hospital, you may be examined by medical students, interns, residents, or fellows. These doctors-in-training can often provide valuable information and support.
• Standing Orders: Ask your admitting doctor to provide “standing orders” for pain and sleep medication, so you can receive them promptly when needed.

Questions to Ask During Your Hospital Stay

About Prescription Medications

• What is this medicine for?
• Is there a generic version available?
• How will this new drug affect my current treatment plan?
• What is the name of the medicine?
• How do you spell the name?
• How am I supposed to take it?
• When should I take my medicine?
• How much medicine should I take?
• How long do I need to take the medicine?
• When will the medicine start working?
• Can I stop taking my medicine if I feel better?
• Can I get a refill?
• Are there any side effects?
• When should I report a side effect to someone?
• Do I need to avoid any food, drinks, or activities?
• Does this new prescription mean I should stop taking any other medications I’m currently taking?
• Can I take vitamins with my prescription?
• What should I do if I forget to take my medication?
• What should I do if I accidentally take more than the recommended dose?
• Is there any written information I can take home with me?
• Are there any tests I need to undergo while taking this medicine?

About Tests

• What is the test for?
• What will the test show you?
• What will happen if I don’t have the test?
• How is the test done?
• Where is the test done?
• How much pain will I experience during and after the test?
• How accurate are the test results?
• Are there any alternatives to the test?
• What are the benefits and risks associated with undergoing this test?
• What do I need to do to prepare for the test?
• How many times have you performed the test?
• When will I get the results?
• What will the results tell me?
• What are the next steps after the test?

About a Recent Diagnosis

• What is my diagnosis?
• What is the technical name of my disease or condition?
• What does the diagnosis mean to me and my life in plain English?
• What is my prognosis (outlook for the future)?
• What changes will I need to make?
• Will I need special help at home with my condition?
• Is there any treatment?
• What are my treatment options?
• How soon do I need to decide about treatment?
• What are the benefits and risks associated with my treatment options?
• Is there a clinical trial (research study) that is right for me?
• Will I need any additional tests?
• What organizations and resources do you recommend for support and information?

Speak Up! If you sense that something may be wrong, speak up. Your healthcare team needs your input to ensure the highest quality of care.

Leaving the Hospital

Planning for a Smooth Transition

Discharge planning is crucial for a successful recovery. If you don’t feel ready to leave the hospital, speak up. If you feel faint, dizzy, groggy, unclear, or in severe pain, you should probably not leave the hospital. Other concerning conditions include the inability to urinate or go to the bathroom with minimal assistance and the inability to keep food or drink down.

Advocate for Yourself

If you don’t feel that your concerns are being heard, you can appeal to your doctor, the hospital discharge planner, the hospital’s patient representative or advocate, and even the state health board. Don’t wait until you’re being wheeled out to discuss your care after you leave. Ensure you thoroughly understand your condition, the necessary follow-up care, the medications you need to take, any warning signs that indicate something is not right, and what to do if you experience any problems. If you don’t have someone to help you at home or in your new care setting, find someone. It’s not in your best interest to try to do everything alone.

The Basics of Discharge Planning

• Evaluation: A professional assessment of your condition.
• Discussion: A discussion with the health professional, the patient, and/or the patient’s primary caregiver.
• Care Plan: Planning for care in whatever your new care setting may be.
• Training and Support: Determination of the training and support required in the new care setting and for future needs.
• Referrals: Recommendations for services in your local area.
• Follow-up: Arrangements for follow-up appointments.
• Medical Records: Transfer of all medical records from your hospital stay or any other facility to the patient, other care settings, and their doctors.
• Communication: Communicate with your doctors and healthcare providers all relevant information pertaining to your transfer of care and condition.

Discharge to Another Facility (Nursing Home or Rehabilitation)

If you are being transferred to a nursing home or rehabilitation facility, you may not have much time to choose the one that is right for you. Safety, quality, affordability, and convenience should be the primary factors that drive your decision.

Questions to Ask When Being Discharged to Another Facility

• How long do you expect me to stay in the facility?
• Who will choose the facility?
• Does the facility have experience working with individuals like me, my condition, and my cultural background?
• How is the facility rated by the Centers for Medicare and Medicaid and other oversight groups?
• Does the food support the diet that I like and need?
• Has the facility had any safety or quality issues in the last year?
• Is the location convenient for my family and caregiver?
• What is the nurse-to-patient ratio?
• Is there a social worker on the staff?
• How easy is it for my family and friends to visit?
• What plans have been made to ensure that medical records are readily available to the clinical staff?

Tip: Be sure to ask if follow-up appointments have been scheduled with your doctor(s) and/or other providers. If they have not been made, determine who to contact, obtain their phone number, and schedule an appointment as soon as possible.

Discharge Summary

Ensure that you and your admitting doctor have access to a discharge summary. This is a clearly written document detailing what you should and can do in your new care setting. It should include a list of medications that were prescribed for you in the hospital and that you should continue to take.

Medical Records

It is also essential to ensure that you and any doctors or healthcare professionals treating you have access to your medical records, both before you enter the hospital and during your stay. You can also request a copy of your medical records, including doctor and nurse notes, as well as all test results, upon admission to the hospital. This way, the hospital is on notice that you want copies as soon as it’s possible.