Dr. You

Medical treatments can vary significantly depending on several factors, including location, the doctor you see, and insurance coverage. This section helps you make informed decisions about your treatment. It emphasizes the importance of collaborating with your doctor, understanding treatment options, working with your health insurance provider, and avoiding unnecessary or overly aggressive treatments.

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

Peter, 15 years old, was diagnosed with metastatic osteosarcoma, a rare bone cancer. He underwent a year of conventional therapy without success. Facing limited options, his doctors proposed experimental treatments. However, Peter expressed a desire to stop aggressive therapy and transition to hospice care, stating he wanted to “die on his terms.” His mother opposed this, insisting on pursuing further treatment and asserting her authority as his legal decision-maker.

This conflict raised ethical and clinical challenges. Peter’s maturity and understanding of his prognosis were evaluated. Despite being a minor, his ability to articulate his preferences (e.g., prioritizing quality of life over uncertain treatment outcomes) suggested a developing capacity to participate in decisions. Doctors balanced the legal standard of parental authority with ethical obligations to respect Peter’s autonomy as his condition worsened. The care team facilitated structured discussions to align Peter’s goals with medical realities. Questions focused on his valued life activities (e.g., spending time with friends) rather than solely on medical interventions. The physicians acknowledged the experimental nature of the proposed treatment and its low likelihood of success, ensuring both Peter and his mother understood the risks.

An ethics consultation was sought to address the conflict between Peter’s wishes and his mother’s insistence on continued treatment. The team explored harm reduction strategies, such as integrating palliative care while respecting his mother’s hope for recovery. The consultation resulted in the clinicians shifting discussions from “curative vs. palliative” to Peter’s definition of a meaningful life, including managing Peter’s pain and enabling him to engage in cherished activities.

After weeks of dialogue, Peter’s care team supported an approach that included immediate palliative care to alleviate suffering and limited experimental therapy to honor his mother’s request. Clear boundaries were set on the discontinuation of treatment if Peter’s quality of life declined. Peter’s case underscores the importance of integrating patient voice, clinical evidence, and ethical deliberation in high-stakes decisions

The Diagnosis

Before any treatment options can be considered, a diagnosis of the potential issue must be established. Your doctor may use the results of certain medical tests to help determine the cause of your condition. It is just as important to understand the benefits, risks, costs, and expectations for any medical test as it is to understand treatment options.

Medical Tests and Your Diagnosis

Before any treatment, you will need a diagnosis, which may involve medical tests. It is crucial to understand the tests your doctor recommends. Here are some questions to ask your doctor about medical tests:

• How is the test performed?
• What information will the test provide?
• Is this test the only way to obtain this information?
• What are the benefits and risks associated with the test?
• How accurate is the test?
• How do I prepare for the test?
• Will the test be uncomfortable?
• When and how will I receive the results?
• What are the next steps after the test?

Common Types of Medical Tests

• Analysis of Body Fluids: Blood, urine, or spinal fluid samples are sent to a laboratory for analysis.
• Imaging: X-rays, ultrasounds, CT scans, MRIs, PET scans, and angiographies provide images of the internal structures of the body. 
• Endoscopy: A flexible or rigid scope is inserted into the body to view internal organs.
• Measurement of Body Functions: Tests such as electrocardiograms (ECGs) and electroencephalograms (EEGs) measure the activity of the heart and brain.
• Pulmonary function tests measure lung capacity.Biopsy: Tissue samples are removed and examined.
• Genetic Testing: The analysis of cells to identify abnormalities in chromosomes or genes.

Ensuring Accurate Test Results

• Ask your doctor which lab they use and why.
• Check if the lab is accredited by a reputable organization, such as the College of American Pathologists or The Joint Commission.
• For mammograms, ensure the facility is approved by the U.S. Food and Drug Administration (FDA).

Accessing Test Results

Test results are often available electronically. Contact your doctor’s office if you do not receive your test results in a few days. Keep copies of all your test results for your records. If you doubt the accuracy of a test result, consider repeating the test.

Avoid Unnecessary Treatment

Millions of Americans receive unnecessary, costly, sometimes painful, or even harmful tests and treatments. Just because a treatment worked for someone else does not guarantee the same result for you. Seeing multiple specialists, undergoing repeated tests, or prolonged hospital stays does not always lead to better health outcomes. Overly aggressive treatment can lead to:

• Increased risk of infections.
• Medical errors.
• Higher out-of-pocket costs.
• Potentially shortened lifespan.

Understanding Your Diagnosis

Once your doctor has a diagnosis of what they believe is wrong, ask them to explain it in simple terms. Here are some questions you may want to ask:

• What are the medical and common names for your condition
• Is the problem generally fixable?
• What are the most common treatments for this condition?
• Do most people achieve a full recovery and return to their normal lifestyle?
• Do you think I will need to make changes in your daily life or require special assistance at home?

Learn About Your Diagnosis

Confirm what your doctor(s) have told you and learn about other treatments from trusted medical websites and artificial intelligence from reputable and professional organizations.

Tip: Search by both the medical and common name for your problem.

Best of the Best Medical Websites

www.healthfinder.gov: This site is provided by the U.S. Department of Health and Human Services. It is one of the most comprehensive sites available for research on almost any condition.

http://www.nlm.nih.gov/medlineplus: One of the most comprehensive health sites on the web from the U.S. National Library of Medicine and the National Institutes of Health.

www.medicare.gov: Centers for Medicare and Medicaid Services. 7500 Security Boulevard, Baltimore, MD 21244-1850, 800-MEDICARE (1-800-633-4227)

http://www.nih.gov: National Institutes of Health (NIH). The government is the primary source for conducting and funding clinical research. 9000 Rockville Pike, Bethesda, MD 20892, 301-496-4000

http://www.ahrq.gov/consumer: This is the Consumers & Patients page of the Agency for Healthcare Research and Quality (AHRQ) website. It contains comprehensive information and resources on safe, quality, and affordable health care, 800-358-9295.

The National Guideline Clearinghouse.™ You can find clinical practice guidelines for many illnesses. The Clearinghouse was developed by AHRQ, the American Medical Association, and the American Association of Health Plans.

Choosing the Right Treatment

Making decisions about your medical treatment can feel overwhelming. Remember that medicine does not always offer perfect solutions, and the best choice is a personal one. It depends on your health, lifestyle, finances, emotional well-being, support system, and your goals.

Key Considerations

• Understand all your treatment options before deciding.
• Understand the risks, benefits, costs, and likely outcomes of each treatment.
• Consider how each treatment will impact your life.
• When the information about treatment options, benefits, risks, and likely outcomes does not lead to a clear choice, seek further guidance from your doctor, a trusted source, or via a second opinion.
• Communicate with your health insurance provider to determine which treatments are covered and what your out-of-pocket costs will be.
• Utilize your doctor’s expertise, trusted Online resources, artificial intelligence, and patient support groups to help you learn about treatment options.

Steps to Informed Decision-Making

Step 1. Gather Information.

Step 2. Talk to Your Doctor. Discuss all of the treatment options, including the option of no treatment. Ask the following questions:

• What is the recommended treatment and why?
• Are there alternative treatments? What are their pros and cons?
• What are the chances that the treatment will be successful?
• What are the expected results, and when will I see them?
• What are the potential risks and side effects? How can they be managed?
• How painful is the treatment, and how will the pain be controlled?
• How quickly do I need to decide?
• What happens if I choose not to have treatment?
• What is the cost of the treatment, and will my insurance cover it?
• Are there any relevant clinical trials I should consider?

Step 3. Seek Multiple Opinions. Do not hesitate to consult with other medical professionals and people with the same diagnosis for different perspectives.

Step 4. Consult with family members, friends, or trusted advisors to engage your support system.

Step 5. Research your diagnosis through reputable online resources to learn about your condition and treatment options.

Avoiding Poor Care

The best thing you can do to avoid poor care is to be an active participant in your care. Start by helping your doctor understand what is wrong by:

• Having your past medical records available for the doctor’s review. If possible, send them before your appointment. Often doctors collect this information online via their health portals.
• Write down your questions before your appointment. Examples of questions were included in Guide 3. 
• Describing your pain and symptoms in detail: Explain when your symptoms began, how often they occur, and what triggers or alleviates them. Use a pain scale (0-10) to communicate the severity of your pain.
• Explaining how your symptoms impact your daily life, including activities such as eating and sleeping.
• Sharing any medicines or treatments you have tried and their effects.

Understanding Surgery

If surgery is recommended, you will need to choose a surgeon. Surgeries are done in hospitals, surgery centers, and even doctors’ offices. The more complicated the surgery is, the more crucial it is to have additional resources immediately available to address any problems that may arise. The best practices for choosing a surgeon are discussed later in this handbook.

Your First Appointment With Your Surgeon

Once you have selected a surgeon, you will schedule an appointment to review your diagnosis and discuss treatment options. During your first appointment, ask your surgeon the following questions:

• Why is surgery necessary?
• What type of surgery is recommended?
• What are the benefits and risks associated with surgery?
• How often does this surgery help with my specific condition?
• How many times have you performed this surgery in the past year or two?
• Are there alternative treatments available for the surgery?
• Where will the surgery be performed? Which hospital is best for this type of surgery?
• Is there more than one surgical approach?
• What are the potential complications and side effects?
• What kind of pain can I expect, and how will it be managed?
• How long will the surgery last?
• What will happen in the first 24 hours after surgery? What happens after that?
• How long will it take to recover?
• Will I need assistance at home? What kind of help?
• What happens if I delay or decline surgery?
• Will my health insurance cover the surgery?
• Can I get a second opinion?

Tip: If you choose surgery, ask the surgeon if they mark the site they will operate on before the surgery begins.

Anesthesia Options

Discuss the risks and side effects of anesthesia with a qualified healthcare professional, such as an anesthesiologist or nurse anesthetist. Inform them of any allergies or medications you are taking. The common types of anesthesia are:

• Local Anesthesia: Numbness in a small area of the body.
• Regional Anesthesia: Numbness in a larger area, such as the lower extremities.
• General Anesthesia: Complete unconsciousness.

Minimally Invasive Surgery (Laparoscopy)

Ask if your surgery can be performed laparoscopically. This technique utilizes small incisions, a camera, and specialized instruments, often resulting in faster recovery times.

Once you have a basic understanding of your condition and the recommended treatments, consider connecting with other patients who have been diagnosed with or are currently living with your condition. Read what they have to say and ask your own questions. 

Online Patient Communities

• PatientsLikeMe: A large online community where patients can connect with others who have the same condition, share experiences, and track their health.
• HealthUnlocked: Offers condition-specific communities where patients can ask questions, share stories, and get support.
• Inspire: Hosts support groups and discussion forums for various health conditions in collaboration with national patient advocacy organizations.

Social Media Groups

• Facebook Groups: Numerous condition-specific groups exist where patients share their experiences and offer advice.
• Reddit: Subreddits dedicated to specific health conditions often have active communities of patients sharing information.

Examples of Condition-Specific Organizations

• Alzheimer’s Association (800) 272-3900 
• American Cancer Society (800) ACS-2345
• Arthritis Foundation (800) 283-7800
• National Multiple Sclerosis Society (800) 344-4867
• HIV/AIDS Treatment Information Service: (800) 448-0440

Mobile Apps

• MyTherapy: Enables patients to connect with others who share the same condition and share their experiences.

In-Person Support Groups

• Local hospitals and clinics often host support groups for various conditions.
• Community centers may offer health-related support groups.
• Always verify information shared by other patients with healthcare professionals, as individual experiences can vary. These resources can provide valuable emotional support and practical tips but should not replace professional medical advice.

Avoiding Healthcare Fraud

Be cautious of unproven or fraudulent treatments. The U.S. Food and Drug Administration (FDA) defines health fraud as products that are advertised or distributed as effective in diagnosing, preventing, curing, treating, or mitigating disease, but have not been scientifically proven to be safe and effective for such purposes. Be wary of products claiming to cure serious illnesses like AIDS, cancer, or multiple sclerosis.

Key Takeaways

• You are an active participant in your healthcare decisions.
• Familiarize yourself with the benefits and requirements of your health insurance policy.
• Work closely with your doctors and healthcare providers.
• Do not be afraid to ask questions and seek clarification.
• Learn as much as you can from your doctors, trustworthy online resources, artificial intelligence, and other patients.
• Trust your instincts and choose a treatment plan that aligns with your values and goals.

This information is intended for general knowledge and informational purposes only and should not be considered medical advice. It is essential to consult with a qualified healthcare professional about any health concerns or before making any decisions related to your health or treatment.