Patient Empowerment through Self-Advocacy
By Maureen Elliott, BA, MA
Senior Manager, Programs and Support
This article was originally published by Heal Canada in their digital magazine, E3 Advocacy, Issue 8.
Pancreatic cancer is known as the world’s toughest cancer with only marginal advancements in survival rates over the past 50 years. Often considered to be a death sentence, a diagnosis of pancreatic cancer is incredibly distressing and can be made worse by your doctor or care team having little advice, direction or support beyond “go home and getting your affairs in order.”
However, more and more patients are demanding better from their healthcare providers and the system in general; they are seeking treatment beyond Canadian borders and asking more questions of their care team to receive more personalized treatment plans. Self-advocacy can be used throughout the pancreatic cancer experience as a tool for gaining control, ensuring the best treatment, and improving both physical and emotional well-being when dealing with pancreatic cancer.
Self-Advocacy in Pancreatic Cancer: Why It Matters
1. Personalized Care and Treatment Options: Engaging in self-advocacy allows individuals to actively participate in their treatment decisions. Pancreatic cancer treatment options can vary based on the stage and type of cancer, and advocating for oneself ensures that the patient explores the most effective and personalized treatments available.
2. Better Communication with Healthcare Providers: When you advocate for yourself, you establish open and clear communication with your doctors, which can help clarify your needs, preferences, and concerns. This promotes a collaborative relationship where you can ask questions, address fears, and ensure that your voice is heard in treatment planning.
3. Access to Clinical Trials and New Treatments: Self-advocacy can help patients stay informed about the latest clinical trials and experimental treatments. By actively seeking out opportunities, individuals may gain access to cutting-edge therapies that are not part of standard treatment protocols.
4. Emotional and Psychological Support: Navigating a cancer diagnosis can be emotionally overwhelming. By advocating for oneself, patients can seek out necessary mental health resources, counseling, or support groups, which can provide a strong foundation for coping with the emotional challenges of the disease.
5. Navigating the Healthcare System: The healthcare system can be complex, especially with serious illnesses like pancreatic cancer. Advocating for yourself ensures that you are aware of all available resources, insurance options, and support systems, which can be crucial for managing finances and accessing the right care.
6. Improved Outcomes: Studies have shown that patients who actively engage in their healthcare decisions and advocate for themselves tend to experience better health outcomes. This is especially true in cancer care, where timely interventions, proactive treatment, and proper monitoring are critical.
7. Empowerment and Control: Being diagnosed with pancreatic cancer can often leave patients feeling powerless. Self-advocacy restores a sense of control over the situation, enabling patients to make informed decisions and take an active role in their health journey, which can positively impact their overall well-being.
Pancreatic Cancer Canada (PCC) actively emphasizes the importance of self-advocacy for individuals diagnosed with pancreatic cancer, providing resources and support to empower patients in their healthcare journey. Our goals, programs, and supports are in place to assist the pancreatic cancer community in their self-advocacy journey and the community that we work alongside supports this vision.
For instance, Nancy Tavares acted as an advocate and caregiver for her husband, George, during his pancreatic cancer journey. While she was initially hesitant to question the doctors and nurses, she realized that she needed to speak up on George’s behalf. To be an effective advocate and a caregiver, she learned to be persistent, inquisitive and strong.
Pancreatic Cancer Canada’s “Ask An Expert” program is designed to empower patients, caregivers, and those affected by pancreatic cancer by providing access to specialized information and support, thereby fostering self-advocacy.
Key Features of the “Ask An Expert” Program:
1. Personalized Information: The program offers tailored responses to inquiries about pancreatic cancer, helping individuals understand their diagnosis, treatment options, and care plans.
2. Assistance in Locating Specialists: If a second opinion or specialized care is desired, the “Ask An Expert” service can help identify and connect patients with appropriate healthcare professionals. Patients have the right to seek second opinions to ensure the best course of treatment.
3. Accessible Communication Channels: Individuals can submit questions through an online form or by leaving a voicemail. PCC commits to responding within two business days, ensuring timely support.
Additionally, the accessible and downloadable resources on the Pancreatic Cancer Canada website support self-advocacy by providing individuals with the tools, information, and guidance needed to make informed decisions about their care. Here’s how these resources contribute to self-advocacy:
1. Easy Access to Information: PCC’s website offers a variety of downloadable resources, such as guides on treatment options, managing symptoms, and questions to ask doctors. These resources allow patients and caregivers to access vital information at any time, ensuring they are well-prepared for appointments and treatment discussions.
2. Empowerment through Knowledge: Resources like the “Questions to Ask Your Doctor” offer a comprehensive guide designed to empower patients by facilitating informed and proactive engagement with their healthcare providers. Other informational posts on available treatments enable patients to become active participants in their healthcare. By having key questions and information at their fingertips, patients can take control of their medical journey and ensure they fully understand their options.
3. Encouragement of Second Opinions: Access to resources supports patients in seeking second opinions to ensure the chosen treatment aligns with the patient’s needs and preferences.
4. Support for Informed Decision-Making: The downloadable resources cover various aspects of pancreatic cancer care, from diagnosis to treatment and follow-up. By providing clear, understandable information, these resources ensure that patients can make decisions based on accurate and comprehensive knowledge, which is essential for effective self-advocacy.
5. Easier Communication with Healthcare Providers: With resources that help prepare for doctor visits and treatment decisions, patients can feel more confident and empowered when communicating with healthcare teams. They can ask the right questions, voice concerns, and advocate for their needs more effectively.
6. Convenient Access for Diverse Needs: PCC’s resources are designed to be easy to download and print, making them accessible to people with varying technological capabilities or those who prefer physical copies. This ensures that all patients, regardless of their background or situation, can benefit from the tools provided.
Through these efforts, Pancreatic Cancer Canada underscores the vital role of self-advocacy, offering support, facilitating access to expert knowledge and resources to help patients and their supportive community become more informed, prepared, and confident in advocating for their healthcare needs, ultimately improving their ability to manage and navigate their pancreatic cancer journey.
Author Bio: Maureen has over 10 years of experience in the not-for-profit and community health sectors. Passionate about patient advocacy and support, she focuses on creating accessible, sustainable programs. Currently, she serves as Senior Manager, Programs and Support at Pancreatic Cancer Canada, dedicated to innovative ways of supporting patients and their communities.
Contact Maureen Elliott via email at melliott@pancreaticcancercanada.ca
Recent Comments