Kavod on the Road: Advocate Resources

Kavod Senior Life provides ongoing, engaging programs for active older adults in the greater Denver community, and JFS is proud to be a member and community partner of the organization. At this year’s Kavod on the Road Conference, Rachel Rotach, MSW, JFS Director of Aging Care & Connections, and Heidi Wald, MD, MSPH Member, JFS Board of Directors, presented on “How to advocate for yourself and your loved ones as you age.”

Find tips, helpful information, and resources from the presentation below:

  • Advocate ad· vo· cate (noun)
    One who pleads the cause of another

    The healthcare system in complex. When a person is dealing with a medical condition, they are already feeling stressed and overwhelmed and may have limited functions. It’s for these reasons and more that everyone getting medical treatment should have someone to support them, help raise questions, take notes, enhance communication with medical staff, and make sure they are receiving patient-centered care.

    Such an advocate can help organize support from others, help review treatment options, and generally support a patient’s needs throughout their care and treatment. And the sicker, less “on top of things” the patient is, the more that advocate is needed.

    Advocates can:

    • Support safe and effective care by:

      • Being your eyes/ears for safety, including hygiene.

      • Speaking up, respectfully; expressing thanks, as well.

      • Assisting with record keeping and information gathering.

      • Providing or arranging for direct caregiving.

      • Coordinating health care activities, resources, and services.

    • Assure your rights (e.g., translation services) and protections (e.g., privacy).

    • Provide peace of mind/emotional support.

  • Self-advocacy is the ability to communicate your needs, preferences, and rights, clearly and assertively. It requires you to understand what you need and the strengths and challenges of the situation that you need to overcome.

    Why is advocacy hard?

    • Health and care navigation is new, and it’s ever-changing with lack of information, new topics, and complex systems.

    • Questioning authority can be intimidating, thinking that a professional is highly educated, and they are the expert.

    • Ageism. 20% of older adults feel dismissed and fear being a burden.

    • Gender. Sexism plays a role in how symptoms are perceived, as well as societal perceptions (e.g., women were often taught not to speak up or self-advocate and to focus on “others”).

    • Marginalized communities. Intersection of these issues, along with people of color, disabilities, low socioeconomic status, etc. = the importance of advocating.

    When it comes to your care, it’s up to you to make sure you are heard. Self-advocacy is a skill that can be learned and practiced at any age.

    Key factors to being a strong advocate.

    • Educate yourself on your health conditions, care planning options, and know about available resources.

    • Understand what you don’t know and what you need to know.

    • Know YOUR priorities – what do you most want right now – treatment ASAP, working around future plans, independence, staying in your home, etc.

    • Identify the doctors and partners in care who you will trust, so can make collaborative decisions.

    • Adapt your communication style to ensure your needs are heard.

    • Create a support team who will help you (e.g., the person or people who will listen and support you, understand your goals, and step in when needed, whether it’s a friend, family member(s), neighbor, or healthcare provider, etc.).

  • It’s essential for you to educate yourself with trusted resources.

    • ‍Visit libraries and review resources through health departments, government resources (NIH/CDC) to understand all available treatment options, including risks, benefits, and alternative options, before making decisions.

    • Review condition/disease-specific resources. This is a great way to address gaps in education and knowledge to address complex medical needs and approaches.

    • Find fact sheets, webinars, support groups, classes, and treatment updates.

    ‍When you are more engaged in treatment plan options, you’re more likely to stay on track with health goals.

    Some trusted organizations include:

  • It’s important to stay on top of your own health experience and feel empowered to push for the best care when you need to, and staying organized is key to succeeding. You should:

    • Know your medical history

    • Have a list of your medications, dosage, and timing.

    • Share any allergies or side effects—and be honest about what you’ve experienced.

    • Have updated legal documents.

    • Know your insurance providers.

    • Take notes or record appointments. Also, bring someone to an appointment or call them on speakerphone. Feel comfortable to use this person to take notes, ask the questions you don’t want to, and be a second set of ears, especially in important appointments that can be stressful or contain lot of new information.

    • Can’t remember what you/the doctor said? Follow up and ask your provider to check your notes and re-explain.

    Tip: Repeat back what you heard by saying, “So what I hear you saying is…”  or “Could you explain that in a different way?” “Can I please repeat back what the next steps are?”

  • Shared decision-making is the process; informed consent is the result.

    • Have a two-way conversation about your goals, priorities, and values with your doctors.

    • Know risks, benefits, and options.

    • Have your questions answered.

    • Make your own choice with all the information you need.

    • Decide together

    The goal of self-advocacy is to ensure that your choices are central to the care process. You and your doctor are meant partners in your care.  Remember, you have the right to say yes or no, and you can change your mind at any time, or ask for alternative options, ask for time to think and make a decision. It's about making your own choices with all the information you need. You decide to agree, or you don’t! The takeaway should be something you fully understand and want to pursue.

    Some questions to ask are:

    • What causes this condition?

    • What are the early signs, progression, and complications?

    • What are evidence-based treatments and their side effects?

    • Are there special considerations for older adults (e.g., drug interactions, comorbidities)?

    • What lifestyle changes may help?

    • What additional care or resources are there to help me during this time?

    Tips:

    • Know who you are speaking with, a social worker versus a doctor, for example, and what they each do.

    • Make a list of questions before an appointment and prioritize them. If you can’t think of any questions, start with your needs/goals/concerns.

  • We know we need shared decision-making and our family/support person on board with our goals, but the reality is it may not be that easy, so let’s discuss HOW we communicate these things using something called “I” statements.

    “I” statements are a communication tool to express your thoughts, feelings, and needs.  These examples may help:

    Situation 1:  Doctor ignores symptoms

    Ineffective:  “You never listen to me”

    Effective:  “I feel dismissed when my symptoms aren’t addressed”

    Situation 2:  Family not helping

    Ineffective:  “You don’t care”

    Effective:  “I need help and feel overwhelmed managing everything on my own”

    Situation 3:  Care recipient resists care

    Ineffective:  “You’re being stubborn:

    Effective:  “I feel worried when you don’t take your medication”

    By using an “I” statement, you focus on your own feelings and experiences, rather than blaming the other person for their actions. This can help to improve communication and prevent defensiveness. Shift from YOU to “I feel.”

    Feeling emotionally supported while being heard and understood gives us a sense of being valued, and it may also diminish feelings of isolation and loneliness.

    When people advocate for themselves and communicate openly, they are more likely to receive timely care, maintain their independence, and enjoy a higher quality of life—both mentally and physically.

  • ‍Pulse Center for Patient Safety shares patient and family resources.

    ‍The National Institute of Aging has great checklists for medications, questions to ask your doctor, and resources.

  • As a patient, you have the right to....

    • ‍Be informed about your care.

    • Make decisions about your care.

    • Refuse care.

    • Know the names of your caregivers.

    • Be treated with courtesy and respect.

    • Have an interpreter.

    • Receive information in a way that meets your needs, such as if you have impaired vision

    • Religious or spiritual services.

    • Copies of your test results and medical records.

    • Have a patient advocate with you during your care.

    • Privacy of your health information

    • Ask that pictures or videos taken of you be used only to identify you in your care.

    • Care that is free from discrimination.

    ‍ If something isn’t right:

    1. ‍ You can escalate concerns to nursing leaders, and in many hospitals you may call a rapid response team.

    2. If the nurse leader cannot resolve the issue, you can ask for support from the hospital advocate or ombudsperson.

    3. Complaints and grievances can be submitted via hotlines or letters/emails to the hospital and will be addressed by the hospital. There are regulations that govern complaints and grievances.

    4. Patient rights must be posted in the hospital.

    Learn how you can complain about poor medical care that you’ve received in a hospital, including while you’re at the hospital or if you don’t agree with you bill at on the U.S. Department of Health and Human Services site.

  • Under the Health Insurance Portability and Accountability Act (HIPAA), patients have the right to access and obtain copies of their medical records, ensuring their health information is protected and private.

    Key Rights Under HIPAA

    • ‍Right to access: Patients have a legal right to inspect and obtain copies of their medical records and billing records maintained by healthcare providers and health plans. This right extends to all forms of health information, whether electronic, written, or oral.

    • Requesting copies:  Patients can request copies of their medical records, and healthcare providers must comply within a specific timeframe, typically 30 days. Providers may charge a reasonable fee for copying and mailing the records but cannot charge for searching or retrieving them.

    • Right to amend: If patients find inaccuracies in their medical records, they have the right to request corrections. Healthcare providers must respond to these requests and amend the records if they created the information in question.

    • Privacy protections: HIPPA establishes strict guidelines to protect the privacy of pateints’ health information. Providers must safeguard medical records and can only share them with others under specific circumstances, such as with patient consent or for treatment purposes.

    • Exceptions: There are certain exceptions to these rights. For example, patients do not have the right to access psychotherapy notes, which are kept separate from other medical records. Additionally, healthcare providers can withhold information that is not part of the designated record set.

    Patients' rights to their medical records are fundamental to ensuring their privacy and control over their health information. By exercising these rights, patients can better manage their healthcare and ensure the accuracy of their medical records. For more detailed information, you can refer to the official guidelines provided by the U.S. Department of Health and Human Services. 

  • Aging isn’t easy, dealing with new issues and asking for help is hard, but it’s essential if you want to maintain your independence and feel connected during hard times instead of feeling isolated. Tapping into local resources can help with everything from affordable healthcare options to transportation services, meal programs, and recreational activities.