Dr. You

Despite its high costs, the U.S. healthcare system often fails to deliver optimal care because patients are not always recognized as the central decision-makers in their health journeys. Instead, physicians, healthcare providers, and insurance companies frequently take the lead in decisions regarding diagnosis, treatment, and care. This section takes you through each step to taking an active and leading role on your healthcare team.

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

The Lifesaving Power of Self-Advocacy. Krista, a CEO and advocate, trusted her instincts and took charge of her healthcare after receiving a questionable diagnosis. Following a standard ultrasound, her doctor diagnosed her with fibroids and recommended a myomectomy (surgical removal of fibroids). However, Krista felt uneasy about the diagnosis and explanation provided by her doctor. So, she decided to dig deeper.

When her symptoms worsened, she hired a radiologist to perform an MRI scan, which revealed something more concerning. The results were “highly suspicious of a malignancy,” contradicting the initial fibroid diagnosis. Determined to get better care, Krista sought out experts at UT Southwestern Medical Center. There, Drs. Como and Flagstaff, and nurse practitioner Kayla, listened to Krista’s concerns and provided compassionate and responsive care. They worked collaboratively with Krista, addressing all her questions and concerns.

Krista was ultimately diagnosed with cancer but received timely and effective treatment thanks to her proactive approach. She has since beaten cancer and now considers herself a “cancer thriver.” Reflecting on her journey, Krista emphasizes the importance of trusting your instincts and asking questions when something doesn’t feel right. Krista’s story highlights how taking an active role in your healthcare by questioning diagnoses, seeking second opinions, and finding the right medical team can be lifesaving.

Why You Need a Healthcare Team

When diagnosed with a serious or chronic illness, you will likely interact with a variety of healthcare professionals. Ideally, each team member’s expertise should contribute to a coordinated and efficient treatment plan. However, communication gaps and differing perspectives can hinder this process. As the patient, you are uniquely positioned to bridge any gaps in care and ensure that your voice is heard.

The Importance of Patient Leadership

No One Else Will Do It For You: While healthcare professionals provide care, they may not always fully understand your individual needs, preferences, and concerns. Taking the lead ensures that your values are respected and that your treatment plan aligns with your goals.

You Control Your Life: Your healthcare decisions impact your well-being and quality of life, not your doctor’s. While your doctor can offer guidance and recommendations, the final decisions about your health belong to you. Leading your healthcare team empowers you to make informed choices that reflect your values and priorities.

Taking the Lead: A Proactive Approach

It is not in your best interest to wait for the healthcare system to embrace patient-centered care. Start taking the lead now by:

• Becoming Informed: Research your condition, treatment options, and potential side effects. Utilize reputable sources such as the National Institutes of Health (NIH) and the Mayo Clinic to gather accurate information.
• Communicating Effectively: Clearly articulate your concerns, ask questions, and share your preferences with your healthcare providers. Do not hesitate to seek clarification or express any doubts you may have.
• Facilitating Communication: Encourage open communication among your healthcare team members. Share relevant information, test results, and treatment plans to ensure everyone is on the same page.

Overcoming Challenges

Leading your healthcare team can be challenging at times. You may encounter resistance from healthcare providers accustomed to a more traditional, paternalistic approach. However, remaining assertive, informed, and respectful can overcome these challenges and establish a collaborative partnership with your team.

You Are the Glue

A significant challenge in healthcare is the lack of established communication channels and effective teamwork among healthcare providers. To ensure everyone is aligned, you may need to prompt providers to communicate, keep track of information shared, and disseminate updates.

Taking responsibility for your decisions is crucial to leading your health team. Whether you accept or decline treatment, switch doctors, or explore alternative therapies, be prepared to own the outcomes.

Finding the Right Primary Physician

A crucial step is to find a primary physician who will respect your desire to lead your health team. This doctor should be open to collaboration, actively listen to your concerns, and involve you in all decision-making stages, from diagnosis to treatment and long-term care.

Become Your Health Team Leader

Leading your health team is easier if you have made health a priority before you are sick. Those who are active participants in their health are also more likely to seek answers, options, and advice in partnership with their health insurers and providers when they begin to experience symptoms, pain, or changes in their body.

Important Note: Leading your team is not the same as self-diagnosis. Always consult a qualified healthcare professional for an accurate diagnosis and personalized treatment recommendations.

Key Members of Your Healthcare Team

You

As the patient, you are the most important member of the team. You make the key decisions, set the goals, and ensure your voice is heard.

Your Primary Care Doctor

Your primary doctor should be a family doctor, general practitioner, internist, geriatrician, or osteopath who is familiar with your overall health and well-being. These doctors are all trained to focus on your broader health issues and overall well-being rather than an individual condition or illness.

Your primary doctor can be a big help when you need healthcare services during transitions from one healthcare provider or setting to another. The most common transition is from a hospital to a rehabilitation facility, nursing home, home care, or hospice. There are many important issues during and immediately after these transitions. They include transportation, transfer of clinical information, care planning, scheduling follow-up appointments, communication, support, and more. More detail on managing care transitions is provided in Guide 15 of this book.

Some people, however, may prefer to receive their primary care from a physician with specialized expertise or training. For example, people older than sixty-five or so may want to seek out a geriatrician, especially if they have multiple age-related problems, such as hearing loss, cognitive decline, and urinary incontinence. Women going through difficult menopause or considering having a child may opt to use an obstetrician/gynecologist as their primary caregiver. People with specific chronic disorders that require frequent monitoring and medication adjustment could consider doctors with special training for those problems. For example, someone with diabetes may consider an endocrinologist and an individual with rheumatoid arthritis may prefer a rheumatologist. Before you select a specialized physician for your primary care, make certain that they are willing to perform the more general tasks required of a primary physician.

Medical Specialists

Your doctor may refer you to a specialist or several specialists throughout the course of your treatment. Each specialist is trained and practices in a specific area of medicine. Common specialists include surgeons, cardiologists, oncologists, neurologists, orthopedists, anesthesiologists, and second-opinion doctors trained in nearly every aspect of medicine.

Insurance Provider/Case Manager

A representative from your insurance company can help you navigate the complexities of coverage, billing, and access to care. You will not receive medical advice from insurance companies, but you may find other, more practical advice about costs and coverage.

Pharmacist

Pharmacists have advanced training and ongoing education in how drugs work to alleviate symptoms, their side effects, and how they work in combination with other medications and foreign substances in your body. Thus, they are an excellent resource for you to discuss your options. Pharmacists are often aware of less expensive alternatives that you can use when you want to reduce the expense of high-cost drugs.

Other Team Members:

• Other Specialists
• Other Patients (support groups)
• Dietician
• Nurses
• Physical Therapist
• Other Therapists
• Dentist
• Hospital Case Manager
• Home Care Professionals

The Medical Home Model

The “Medical Home” model is a promising approach to patient-centered care that emphasizes:

• A long-term relationship between the patient and their primary care doctor.
• Care coordination by the primary care doctor, involving all healthcare team members.
• Use of electronic medical records and clinical support systems to facilitate information sharing.
• Collective responsibility for the patient’s ongoing care.

This model aims to provide comprehensive, coordinated, and proactive care focusing on the patient’s overall health and well-being.

The Patient’s Role in Reducing Medical Errors

Medical errors, defined as unintended incidents during medical care that harm patients, can occur in various healthcare settings. The most common mistakes involve medications, surgery, infections, diagnoses, equipment, and laboratory reports. Communication breakdowns between doctors, patients, and other healthcare providers frequently contribute to these errors.

Prevention Strategies: What You Can Do

The single most effective way to help prevent errors is to be an active member of your healthcare team. That means asking a lot of questions and being involved in every decision about your healthcare. Research indicates that patients who are more actively involved in their care tend to achieve better outcomes.

Medications

• Readability: Ensure you can read your prescriptions. If not, ask your doctor or pharmacist to clarify.
• Medication Reconciliation: Maintain an accurate and up-to-date list of all medications, including prescription medications, over-the-counter drugs, and dietary supplements. Share this list with your healthcare providers.
• Allergy Awareness: Inform your doctor about any allergies or adverse reactions you have experienced with medications.
• Ask Questions: When your doctor prescribes a new medication, ask the following questions:
o What does the medicine do?
o How should I take it, and for how long?
o What are the potential side effects?
o Can it interact with other medications or supplements I am taking?
o Are there any foods, drinks, or activities I should avoid?
o Written Information: Request written information about potential side effects.

Hospital Stays

• Hospital Selection: If possible, choose a hospital with experience in performing the specific procedure or surgery you require.
• Discharge Planning: Before leaving the hospital, ensure that your doctor clearly explains your at-home treatment plan and requests a meeting with the hospital’s patient service representative and/or the leader of the discharge management team. Discharge planning should not be delayed until the day before discharge. It should start within twenty-four hours after your hospital stay begins.
• Surgical Verification: If you are undergoing surgery, confirm with your doctor and surgeon the exact procedure that will be performed, and ensure that the surgical site is clearly marked prior to the procedure.

Other Tips for Reducing Medical Errors

• Identify Roles: Ask each healthcare provider about their specific role in your care.
• Ask Questions and Voice Concerns: You have the right to ask questions and express any concerns.
• Designated Care Leader: Ensure that someone, preferably your primary care physician, coordinates your care, especially if you have multiple health issues or are hospitalized.
• Information Verification: Ask all healthcare professionals if they have the necessary information to perform their duties effectively.
• Advocacy: Enlist a family member or friend to serve as your advocate, especially if you are unable to speak on your own behalf.
• Test Results: Ask about the results of your tests and ensure you understand their implications.

References

Institute of Medicine (US) Committee on Quality of Health Care in America. Crossing the Quality Chasm: A New Health System for the 21st Century. Washington, DC: National Academies Press (US); 2001.

Coulter, A., & Ellins, J. (2007). Patient-Centered Approaches to Healthcare: A Review of Literature. Picker Institute Europe.

Resources

National Institutes of Health (NIH): https://www.nih.gov/
Mayo Clinic: https://www.mayoclinic.org/
American Academy of Family Physicians (AAFP): https://www.aafp.org/
Agency for Healthcare Research and Quality (AHRQ): https://www.ahrq.gov/
Agency for Healthcare Research and Quality. https://www.ahrq.gov/patients-consumers/diagnosis-treatment/diagnosis/5q.html