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By Mia James
When you’re undergoing treatment for cancer, it can seem like you’ve put your life in the hands of your health care team. And though trusted experts are certainly an essential part of your recovery, your role in your care is no less critical. By becoming educated about your diagnosis and treatment options and taking an active role in decisions about treatment, you can become an empowered patient and can lead the way toward the best possible outcome.
Empowerment Starts with Education
The foundation of patient empowerment, according to Joel Granick, MD, a medical oncologist at Cancer Treatment Centers of America® (CTCA) in Goodyear, Arizona, is patient education. Health care providers are responsible for educating patients about the diagnosis—including providing them with a thorough understanding of the particular type and stage of disease as well as of the available treatments.
Dr. Granick says that there are several essential topics that a health care provider should cover as part of the initial patient/ physician discussion. These include information about available treatment options; a clear description of the advantages and the disadvantages of each option; and a discussion of whether no treatment is an appropriate option. The goal of this process, he says, is to help the patient make a decision based on personal preferences.
“Our main role is to become educators,” Dr. Granick says of
health care professionals’ responsibility in patient empowerment.
“We need to teach patients about the disease and the treatments
and to explain it in terms that they can understand.” He
goes on to explain that health care professionals can further enable patient empowerment by helping patients feel comfortable
asking questions (as many as needed to understand) and providing
written educational materials (in patient-friendly language,
of course) about diagnoses and treatments.
Effective patient empowerment requires a team effort among
health care professionals, patients, and caregivers. Basically,
your care team is responsible for providing the education; your
role is to make sure you understand that information and ask
questions when you’re uncertain.
Though you’ll likely have questions specific to your individual
circumstances, Dr. Granick suggests that you cover some
basic areas so that you know how significant aspects of your
life, such as family and career, may be affected. Ask about prescribed treatments—how they work, potential side effects, and
how likely they are to be effective—and about how your treatment
plan may affect your quality of life. And don’t be afraid
that any question is too basic; any topic that has an impact on
your treatment and your life as a whole merits attention.
There are also certain steps you can take to ensure that communication between you and your health care team is effective. Dr. Granick recommends bringing a list of questions to each appointment. You may want to keep a notebook with you at all times so that you can record any questions that come to mind and bring them to your doctor. And to keep track of the information you receive during your appointment, consider taking notes or bringing a friend or family member to help with the task. “Two sets of ears are always better than one,” Dr. Granick explains.
Why Become Empowered?
The benefits of patient empowerment are extensive and can affect many aspects of your care. To begin with, Dr. Granick says, for treatment to be successful, you need to believe in the medicines and the procedures that your plan comprises. “If you don’t have a belief that something may work, you’re not going to do as well as if you’ve been involved in the decisionmaking,” he explains, adding that patients who are involved in choosing their treatment are more likely to believe that their plan will be effective.
Another very measurable benefit of patient empowerment is compliance with the treatment plan. When you take an active role in deciding how you’ll be treated, Dr. Granick says, you’ll understand the importance of your plan and be more likely to follow it.
A New Way to Become Empowered
Because patient empowerment can make such a positive contribution to treatment, CTCA has partnered with the advocacy initiative Stand Up To Cancer (SU2C; standup2cancer.org) to launch a campaign that raises awareness about empowerment and helps patients achieve it.
Called the QN2A Project, the campaign includes both video and print public service announcements (PSAs) and an interactive online community, QN2A.org, where patients and caregivers share treatment and disease management questions they’ve found most helpful. The current PSA video, “Better Questions, Better Care,” features actor James Denton of Desperate Housewives and can be viewed at QN2A.org. Sue Schwartz, co-founder of SU2C, explains that the name QN2A “means that we’re turning questions into answers.
“The goals of the campaign,” Sue says, “are to provide patient empowerment as well as an online community that serves as a resource for both patients and caregivers.” The program is highly interactive— patients and caregivers share questions that will help others better understand a disease, treatment, side effects,
and other issues surrounding a diagnosis. Users can also vote on questions they find most helpful. And, Sue says, QN2A.org allows patients and caregivers to connect with others facing comparable challenges: “It’s really a social community—so that people can interact with others who are going through similar things.”
According to Shayma Kazmi, MD, a hematologist and medical oncologist at CTCA in Philadelphia, Pennsylvania, the mission of QN2A is to educate patients and caregivers to help them pursue the information they need. “The most important premise of the campaign is education,” she says, explaining that because cancer and treatments are so complicated, patients and caregivers are best able to understand diagnoses and therapies when given some structure for learning. If you know what types of questions to ask, you’ll come prepared to get the most out of the appointment and avoid confusion and anxiety over unanswered questions.
By using PSAs, which appear online and in print media, to raise awareness about patient empowerment and providing its educational online resource, QN2A is giving patients the tools to become active partners in their care. The tools in this case, explains Dr. Kazmi, are the questions that patients and caregivers
share on QN2A.org. “You really ought to know what your questions are,” she says, and she encourages patients to “do a little homework” before their appointments. By accessing questions on the site that other patients and caregivers have found useful, you can arrive at your appointment prepared to make the most of your time.
“I think that the overarching theme is that it’s about empowerment; it’s about asking questions,” Sue says, explaining
that the more you learn about a diagnosis, the more you can be in charge of your treatment. “What we say in the PSA campaign is that having questions doesn’t make you weaker—it makes you stronger.”
All You Have to Do Is Ask
The remarkable thing about patient empowerment is that it can have a big impact on your care and outcome with relatively little effort on your part. It’s as simple as asking the right questions. And with a resource like QN2A to help you choose those questions and a medical team ready to answer them, you’re already on your way to becoming empowered.
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