Patient Advocacy: The Importance of Advanced Care Planning
With special guest: Ashton Nesmith-Kochera, BCPA (@apatientadvocate)
While my usual content revolves around research, medicine and the science behind complex chronic illnesses like the Ehlers-Danlos syndromes (EDS), postural orthostatic tachycardia syndrome (POTS) and mast cell activation disorder (MCAD), today, I am excited to shift the focus to a topic that can make an immediate impact in your healthcare - patient advocacy.
Living with chronic illness, especially those that lack education and awareness can mean that making decisions about your healthcare falls just as much onto the patient as the provider. I am thrilled to collaborate with Ashton Nesmith-Kochera, a Board Certified Patient Advocate, to shed light on the significance of patient advocacy and advanced care planning. Ashton has been kind enough to share some tips and resources below:
Ashton Nesmith-Kochera, BCPA:
Living with EDS presents a unique set of challenges. Navigating the complex healthcare system is a challenge in itself. It can often leave us feeling defeated. My frustration with the healthcare system continues to fuel my passion as a Board Certified Patient Advocate. I am excited to join forces with Dr. Cortney Gensemer, who understands the healthcare system all too well. Our goal is to spotlight the significance of patient advocacy and the critical need for advanced care planning within the EDS community.
Person-Centered Advocacy:
As a person within the diverse EDS community, learning to articulate individual symptoms, concerns, and treatment preferences can be overwhelming. Yet, its importance is crucial due to the complex nature of EDS. Person-centered advocacy leads us to become a well-informed advocate in our healthcare so that we are empowered to make our own informed decisions.
Advanced Care Planning:
Advanced care planning involves the creation of several important documents that outline your healthcare preferences and decisions. Imagine it as a thoughtful conversation with your future self, allowing you to express how you wish to be cared for and defining healthcare and medical decisions that align with your individual beliefs. Your voice echoes through every aspect of your medical care, especially if you experience a situation where you can not speak for yourself.
It is never too early to start these documents. Anyone 18 or older, regardless of health status, should consider securing their healthcare preferences. This proactive approach not only ensures personalized care but also provides peace of mind for individuals and their loved ones when one is not able to speak for themselves. It contains choices for medical care, surgery, life support treatment, resuscitative efforts, and blood transfusions, among other options.
Far from a single decision, Advance Care Planning is an ongoing process that evolves with life's changes. However, you can start today by creating a simple Advanced Directive. The process does not need to be overwhelming. There are resources available to help make it easier. I have provided a list of the first steps to take the initiative and begin the process of Advanced Care Planning.
Reflecting on Your Wishes: Pondering your desires for future healthcare in the face of critical illness or injury, shaped by experiences, cultural and religious views, values, and goals.
Choosing a Health Care Agent: Select a trustworthy individual to act as your healthcare decision-maker if you can't make those choices yourself.
Open Dialogues: Engaging in crucial discussions with your healthcare agent and loved ones can help bring peace of mind. Though challenging, these conversations are pivotal, potentially preventing future conflicts.
Documenting Your Wishes: Completing an Advance Directive. Starting with this document is a great way to begin the Advanced Care Planning process.
Sharing: Distributing copies of your Advance Care Planning documents to your health care agent, physicians, and loved ones. Ensure your Advance Directive is part of your medical record.
Updating: Regularly review documents to update names, contact information, and healthcare wishes. It's important to provide everyone you share the documents with updated versions.
Enduring the challenges of Ehlers-Danlos Syndrome necessitates resilience and a sense of personal empowerment. With a focus on person-centered advocacy, individuals grappling with EDS, as well as other health conditions, can confidently navigate the intricate process of advanced care planning.
Additional Resources:
There are initiatives like The Conversation Project and PREPARE for Your Care™ that are valuable free resources for anyone seeking guidance on navigating this aspect of life.
Patient Advocate Foundation (Case Management Assistance & Resources)
*Disclaimer: Please note that laws and regulations can vary by location. Check with local resources and ensure that any documents created align with applicable legal requirements in your jurisdiction. It's important to consider consulting with your healthcare provider or a legal professional in regard to specific concerns and questions about the medical or legal aspects of advanced care planning. All information is for general informational purposes only. It is not a substitute for any advice. Content is subject to change without notice.
Ashton Nesmith-Kochera is a Board Certified Patient Advocate who works within independent practice specializing in the intersection of chronic illness and neurodiversity. She offers public and private sector collaboration opportunities with a mission to advocate, educate, support, and inspire others. You can find Ashton on Instagram and TikTok @apatientadvocate or through her website at www.AshtonBCPA.com.
References:
https://theconversationproject.org
https://prepareforyourcare.org/en/welcome
https://www.statesidelegal.org
https://www.patientadvocate.org