How to Become a Take-Charge Patient through Cancer
About the Lecture
Frustrated or confused about how to get good medical care? In her newest book, The Take-Charge Patient, Martine Ehrenclou, M.A., empowers patients to become proactive, assertive, well-informed participants in their own health care. Martine discusses the wealth of information provided in her newest book, filled with advice and stories from over 200 doctors, nurses, pharmacists, other medical professionals and patients. Patients and caregivers can learn to cut through red tape and navigate today’s complex health care system with confidence.
Martine Ehrenclou, M.A.,has a master’s degree in psychology from Pepperdine University and is currently completing a certificate program in patient advocacy. Martine regularly publishes articles on the topics of patient empowerment, patient advocacy, patient safety, successful communication in medical encounters, the collaborative relationship between patients and medical professionals, and other health/medical related issues. She has been interviewed on national TV, radio, newspapers and magazines, including NBC News, ABC News, KCAL 9/CBS News, NPR, Prevention Magazine, Woman’s Day, Family Circle, Los Angeles Times Magazine and many more. Martine lectures at universities, hospitals, and health organizations on patient empowerment, patient engagement, the collaborative relationship between physicians and patients in patient-centered care, and more.
She is also the author of the award winning, Critical Conditions and is a member of the Simms/Mann — UCLA Center for Integrative Oncology Advisory Board.
This is a summary of a lecture presented on March 11, 2014.
Who is a take-charge patient? It’s a patient who takes charge of what she can and meets her doctor or nurse half way. She is empowered, engaged, well informed, assertive, diplomatic, and confident. What do take-charge patients do? They participate in and get involved with their medical care process and ask questions. They seek out second opinions and are proactive about enlisting advocates when needed. They do credible research, and they take the time to understand their diagnosis thoroughly and evaluate their options in treatment plans.
Why do we do this? Well, there are three primary reasons that exemplify why this is necessary. By doing this, we have a part in increasing the overall quality of care, preventing additional medical errors, and improving patient satisfaction. To make sense of the importance of all these reasons, we need to understand what patients go through and experience. When going through the health care process, patients can be vulnerable and have anxieties and fears about their diagnosis or the prevalence of possible medical errors. They may also feel dependent on their medical providers. Some feel stripped of their identities as they endure the treatment process and may feel intimidated by their physicians. According to the Institute of Medicine, 1.5 million people are harmed by medication errors each year. Along with this alarming statistic are the approximately 195,000 occurrences of preventable, fatal medical errors every year (AHRQ). According to the Commonwealth Fund, 20% of hospital Medicare patients are readmitted. In addition to this, every year, 40 – 80,000 patients die due to misdiagnoses (Society to Improve Diagnosis in Medicine). Thus, patient safety is an important aspect of patient-centered care.
Patient Story: Debbie B (Cancer Survivor)
Debbie had a mammogram and ultrasound and was told her tests were clear. One month later, she found a lump after performing a breast self-examination check. Having made this discovery, Debbie became proactive in the care process, utilizing the tools that make a take-charge patient and is living cancer-free today.
The Patient’s Toolkit
Where do you begin? An excellent place to start is with the Patient’s Toolkit. This toolkit includes several forms with checklists, and questions to help guide each patient through key points in their medical care. These items include copies of your medical records, a prepared list of questions and your top three medical concerns, and an up to date list of medications and allergies. It’s important to provide your physician or nurse with a brief summary of your family medical history, such as chronic illnesses and health conditions. Also, try to keep copies of medical records that include at least 5 years’ worth of pertinent past medical history. Compile all of these forms and documents into a health file at home and remember to get a copy of each medical record at the time of each doctor’s appointment. To support your doctor’s efforts to arrive at an accurate diagnosis, create a symptom diary. Document when your symptoms started and if there was an associated physical event or new medication, what makes symptoms worse or better, and the time of day you experience these symptoms. It’s important to document not only the occurrence of these symptoms, but to share this information with your medical provider.
Many patients want to be or at least feel like they have control in their patient care. Prepare ahead of time for medical encounters, and you will feel more confident and in control. Preparation helps to maximize the time spent with your physician. In addition, obtain copies of your medical records, and review your medical records for possible errors. Having errors on your medical records can affect the quality of care you receive. Create a brief medical history for any new physician, complete with major medical events, diagnoses, and treatments. This allows your doctor a snapshot of what you’ve been through. By taking steps to gather and review your medical information you can reduce anxiety and stress and allow yourself to make the most of your time with medical providers. Create a Medical ID card with your name, physician’s names and contact info, diagnoses, current medications, and allergies to medications. Place it in the slot next to your driver’s license in your wallet Medical professionals can easily accessible this information in case of a sudden medical emergency. By coming prepared to office visits with your patient’s toolkit, you will also maximize the time you have with your doctor during each appointment by having everything already prepared, which increases the chances of getting your needs met.
Performing research as a patient is essential. It’s about becoming well informed so you can make wise choices for yourself with your doctor’s guidance. However, you must do thorough research to ensure that the information you reference is credible. It’s important to resist the temptation to type your symptoms into a search engine when researching your symptoms or diagnosis; try to utilize websites that are accepted by the medical community. Credible websites are medical academies, medical societies, academic medical schools, and disease-specific health organizations, and they end in .edu, .org and .gov. Another part of becoming well informed is getting second opinions. Find a specialist who is highly experienced in your illness or disease, e.g., someone affiliated with a respected medical school or hospital who is board-certified in that specialty. You can begin your search to find a qualified second opinion by reaching out to a good doctor you respect, asking loved ones and colleagues, researching online patient communities and support groups, and getting in touch with those in the medical field such as registered nurses in the ER. Consider visiting weekly health tweet chats on Twitter that are disease specific (go to http://www.symplur.com/healthcare-hashtags/tweet-chats/ to find chats).
If you don’t feel well enough to do this yourself, enlist the help of a loved one for assistance. Don’t be afraid to ask for help, it’s never easy, but it can make a difference.
You can take action towards preventing the possibility of medical errors throughout your care process by becoming an active participant in your care. The more familiar you are with your disease or condition, the more in control and confident you will feel and the more effective conversations you will have with your providers. For patients who have a serious illness, asking a friend or loved one to help you as your advocate can have a tremendous impact on improving your care experience. Have them go with you to medical appointments and encourage them to be an advocate on your behalf. Create your own support system and take care of your emotional health. Throughout this process, it’s important to keep your primary care physician in the loop. Ask them to review your diagnosis and proposed treatment plan. Do your research to make the most out of choosing an appropriate treatment plan. Talk to other patients, reach out to support groups and online communities and ask about the risks and benefits of each treatment option. Get additional opinions from specialists and ask about alternative options to treatment plans.
Medical Provider & Patient Collaborative Relationships
According to the Joint Commission, collaborative care is associated with improved patient outcomes. Collaboration is vital between you and your physicians, nurses and medical care team, in order to optimize the quality of care through shared decision-making. Shared decision-making is mutual agreement between the patient and medical provider on the management of the treatment. The collaborative relationship between a patient and medical provider is the cornerstone of quality care. The goal of this partnership is mutual agreement through respectful discussions.
Emotional Connection between Medical Provider and Patient
An emotional connection or bond is an important part of a collaborative relationship (BMJ). Patients need to trust that medical providers will act in their best interest. The basis for emotional connection between patients and their medical providers is trust, empathy, mutual respect, mutual understanding, and effective communication. Good doctors are successful communicators. Mutual trust is fundamental because the patient has to feel that they can trust their medical provider and be honest with them. If you are suffering, you need empathy and acceptance. The results of poor relationships between medical providers and patients can have negative impacts on the quality of care. It leads to decreased patient satisfaction, decreased treatment adherence and decreased patient safety. As a patient, if you ever feel as though you’ve been dismissed or overlooked by your medical provider, it might be time to re-evaluate the relationship you have with them.
Communication Strategies for Patients
Patients need skills to communicate effectively. Communication is a major component of successful relationships. Doctors tend to be cognitive thinkers. As a patient, it’s important to practice effective ways of communicating with your doctor that include: speaking in an even tone, sticking to the point of each topic, humanizing yourself, asking questions, being respectful and staying actively involved in your care.
Research has shown that patients don’t always accurately remember the information presented to them by their doctors. 40 – 80% of the medical information that patients retain is incorrect. Why is it so hard to remember what your doctor says? Well, there are many possible factors that might contribute to a patient experiencing difficulty retaining medical information. Anxiety or other types of emotional triggers can inhibit a patient’s ability to retain the information presented to them by their doctors. Patients can be affected by a severe illness or condition, and might be embarrassed by symptoms. Healthcare information can be complex, and this may overwhelm and intimidate patients. Take notes on what your medical provider explains to you about your diagnosis, proposed treatment plan and next steps. It’s always helpful to bring someone with you to the appointment, so there’s an additional person who takes notes. Ask them to be your advocate and to help you research your diagnosis, good physicians and treatment options. An advocate should be someone that has time available, is attentive, detail oriented, assertive and diplomatic, supportive to you, and is a patient person.
What You Can Do
As a patient, it’s important to know your medications and dosages. Keep a list with you in your smart phone, or in an app or on a piece of paper. Include your allergies to medications. In 2008, the Pennsylvania Patient Safety Advisory Board reported that 3,800 patients were prescribed medications to which they were allergic! Become more proactive in your patient care to ensure that this won’t happen to you. Use your pharmacist, who is often an untapped resource. Try to purchase from a single pharmacy and make appointments, as needed, to speak with your pharmacist. Once again, the take-away message of this article is that you need to be involved in your healthcare and always ask questions and document the answers so you can refer to them later. Prepare ahead of time, do credible research, get a copy of your medical record from each encounter at the time of service and take back some control of the quality of your care. Be an active participant in your own healthcare.