As a young person with a blood or bleeding disorder, navigating the healthcare system can be challenging. That's why it's essential to know your rights and responsibilities. These include informed consent, timely access to specialty care, confidentiality, and understanding health insurance coverage and costs. To manage your blood or bleeding disorder effectively and work well with your care team, focus on maintaining a healthy lifestyle, engaging actively with health care providers, and making informed decisions.

This section of Talking to Your Health Care Provider covers:

Your Rights as a Patient

Your Responsibilities as a Patient

Emotional Intelligence in Communication

P.A.C.E Approach for Effective Communication

Your Rights as a Patient

Navigating the healthcare system can be complex, especially for people with blood or bleeding disorders. By understanding your rights, you can effectively manage your disorder. In collaboration with your care team, this knowledge helps you achieve the best possible health outcomes.

Anyone who seeks health care treatment has the following rights4:

Informed consent in treatment decisions

Informed consent is your right. This right ensures you understand the risks, benefits, and alternatives of any suggested medical treatment. Before you start any treatment, your health care provider should provide clear explanations. They should answer your questions to help you make an informed decision. Your consent should be voluntary. Your consent can also be withdrawn at any time if you change your mind or if you find new information.

Timely access to specialty care

When you have a blood or bleeding disorder, you will need specialized care. This may involve appointments with health care providers who specialize in treating blood or bleeding disorders (hematologists) or other medical specialists. Timely access to specialty care is important. When you can access specialty care you can manage your condition effectively, prevent complications, and make sure you receive the right treatment.

Confidentiality

Confidentiality is a critical aspect of healthcare. Your personal medical information should be protected. Personal medical information should only be disclosed to authorized individuals on a need-to-know basis. Health care providers must follow strict privacy laws and regulations, such as HIPAA5 in the United States. These rules keep your sensitive health information safe. These protections help to maintain trust between patients and providers and support open communication.

Clear and easily understood information about health insurance coverage

Understanding your health insurance coverage helps you navigate the healthcare system and make informed decisions about your care. Your insurance provider should give clear, easily understood information about their coverage. This should include any limitations, exclusions, or co-payments. With this knowledge, you can better choose treatments, health care providers, and plan for out-of-pocket expenses.

If you want more information about health insurance, please go to Insurance Basics.

A reasonable choice of providers and useful information about provider options

You should have access to a variety of health care providers, including specialists who are experienced in treating blood or bleeding disorders. This choice allows you to select a provider that aligns with your preferences, needs, and values. Your health care provider and insurance plan should offer information about available options. This should include provider education, certifications, experience, and patient feedback. This information will help you make an informed decision.

Complete and easily understood information about the costs of your care

Openness about the costs of your healthcare is vital for managing your finances and making informed decisions. Your health care provider and insurance company should provide clear, easily understood information about the costs of your care. This should include deductibles, co-payments, and out-of-pocket maximums. Additionally, they should explain the costs of specific treatments or procedures. This will help you to predict expenses and make the best decisions for you.

 

Your Responsibilities as a Patient

Living with a blood or bleeding disorder requires a proactive approach to health management. To ensure your well-being and minimize complications it's important to prioritize a healthy lifestyle. By taking charge of your health, becoming an informed advocate, and communicating regularly with your care team, you can overcome any challenges and ensure the best health for you.3

Here are some things you can do:

Follow a healthy lifestyle for overall well-being

A healthy lifestyle will help you with overall well-being and minimize complications. Following a healthy lifestyle may include a balanced diet, regular physical activity appropriate for you, getting enough sleep, and managing stress. Additionally, you should follow any specific recommendations from your health care provider, like avoiding certain activities or taking prescribed medications as directed.3

If you want more information about healthy eating, please go to Food Choices.

If you want more information about physical activity, please go to Physical Activity.

If you want more information about managing stress, please go to Managing Stress.

Become knowledgeable about your health insurance plan

It is important to become familiar with your health insurance plan and understand its coverage limitations. This knowledge helps you make informed decisions about your child’s care. It will also help you to anticipate out-of-pocket expenses and avoid unexpected costs. You may need to research or ask questions about your coverage. You can ask which providers and treatments are included, any exclusions, and details about co-payments, deductibles, and out-of-pocket maximums.3

If you want more information about health insurance, please go to the Financial Health and Insurance section.

Participate in decisions about your health care

Taking an active role in your healthcare decisions is important to ensure your well-being. This includes asking questions, discussing any concerns, and sharing your preferences with your health care provider. Collaboration with providers allows for a more personalized approach to care, tailored to your unique needs and values. Remember that you are the most important advocates for your health. Your input is needed to shape your healthcare journey.3

Create mutually accepted treatment plans

Once you and your health care provider have agreed upon a treatment plan, follow the plan closely. This may include attending scheduled appointments, taking medications as prescribed, following any recommended lifestyle changes, and completing necessary tests or procedures. This ensures that your care is consistent and effective. It will also help to prevent complications and optimize your overall well-being. Remember that communication is key. If you have concerns or difficulties following your treatment plan, discuss them with your health care provider to find a solution that works for all of you.3

 

Emotional Intelligence in Communication

Emotional intelligence is important when communicating with your health care providers. This includes social skills, self-regulation, motivation, empathy, and self-awareness. Emotional intelligence can improve interactions with your provider. Quality interactions lead to better understanding, trust, and more effective care.1

Social Skills

Having strong social skills helps you communicate effectively with your health care provider. These will foster a positive relationship and ensure that your concerns and preferences are understood. By actively listening, maintaining eye contact, and showing gratitude, you can collaborate effectively and encourage open dialogue.1

Self-regulation

Self-regulation is managing your emotions and remaining calm when talking with your health care provider. This can be particularly important when discussing sensitive topics or receiving difficult news. By staying calm and composed, you can better process information, ask relevant questions, and make informed decisions about your care.1

Motivation

Being motivated to help you take charge of your health and actively participate in your care is important for your well-being. You can show a proactive attitude by seeking information, asking questions, and following your treatment plan.1

Empathy

Empathy allows you to understand and appreciate the perspective of your health care provider. It will foster a sense of shared respect and collaboration. Recognizing the challenges and pressures that health care providers face can help you be patient, compassionate, and understanding. This will contribute to a stronger patient-provider relationship.1

Self-awareness

Self-awareness involves recognizing your emotions, strengths, weaknesses, and personal biases. By being self-aware, you can better understand how your emotions and beliefs might affect your interactions with health care providers. When you are self-aware you can manage your expectations, address any misunderstandings, and have an open mind. This will allow for more effective communication and decision-making.1

 

P.A.C.E. Approach for Effective Communication

The P.A.C.E. approach (Presenting, Asking, Checking, and Expressing) offers a structured method to improve communication and understanding between you and your care team. You can do this by clearly stating your symptoms and medical history, asking relevant questions, verifying your understanding of the information given, and expressing your feelings and preferences. By using the P.A.C.E. approach you can foster a strong patient-provider relationship. This will promote personalized and effective care that is tailored to your unique needs and values.2

Presenting
  • Clearly describe your symptoms, medical history, and concerns to your health care provider.
  • Be honest and thorough to ensure that your health care provider has all the necessary information.
  • Bring your treatment log to your appointment.
Asking
  • Inquire about your diagnosis, treatment options, and any potential risks or benefits associated with your care.
  • Don't be afraid to ask more questions if you don't understand something or need more information.
Checking
  • Confirm your understanding of the information provided by your health care provider.
  • Restate what you have learned to ensure that you and your provider share the same understanding.
Expressing
  • Share your feelings, preferences, and concerns with your health care provider.
  • Open communication helps to build trust ensuring that your provider takes you and your needs and values into account when making treatment decisions.

 

References
  1. Goleman, D. (2023, March 3). Emotional Intelligence Has 12 Elements. Which Do You Need to Work On? Harvard Business Review. https://hbr.org/2017/02/emotional-intelligence-has-12-elements-which-do-you-need-to-work-on
  2. National Hemophilia Foundation. (n.d.). Communicating with Providers [Slide show; Presentation].
  3. Patient Responsibilities | ama-coe. (n.d.). https://code-medical-ethics.ama-assn.org/ethics-opinions/patient-responsibilities
  4. Patient Rights | ama-coe. (n.d.). https://code-medical-ethics.ama-assn.org/ethics-opinions/patient-rights
  5. Rights, O. F. C. (2022, October 19). Summary of the HIPAA Privacy Rule. HHS.gov. https://www.hhs.gov/hipaa/for-professionals/privacy/laws-regulations/index.html