Patients faced with a serious diagnosis are often confronted with more questions than answers. Dealing with the shock of unexpected illness, while simultaneously learning about treatment options and navigating the labyrinth of insurance claims, can be overwhelming.
Andrea Wilson Woods, founder and president of Blue Faery: The Adrienne Wilson Liver Cancer Association, found out firsthand about the challenges facing both those suffering from liver cancer and those who care for them.
Ms. Wilson Woods didn’t start out planning to establish a nonprofit. But when, at age 22, she became the legal guardian of her 8-year-old sister, Adrienne, her life’s course changed dramatically and unexpectedly. At age 15, Adrienne was diagnosed with hepatocellular carcinoma (HCC), the most common type of primary liver cancer. Adrienne battled HCC for only 147 days after her diagnosis, before her death from the disease.
Following Adrienne’s death, Ms. Wilson Woods was devastated but also knew that their experience through the process of cancer treatment could have been better than it was. She told The Epoch Times:
“I was really lost, so I wanted to channel my grief. I looked around at the landscape and I knew that primary liver cancer was only going to get worse, and also there wasn’t a single organization in the U.S. at all, doing anything in this space.
“That’s why I started Blue Faery. I kind of joke that I don’t know a single nonprofit founder whose life dream was to start a charity.”
In the Dark About Hepatocellular Carcinoma
Ms. Wilson Woods found that there was a surprising lack of information available to patients about HCC, even though it’s the sixth most common cancer worldwide, and the third leading cause of cancer deaths. Having to do her own extensive research spurred her desire to help make information about HCC more readily available to others battling the disease.“When my sister was diagnosed, the surgeon who did her biopsy gave me all these sheets on her chemotherapy,“ she said. ”I said, ‘Well, that’s great, but I want to learn more about the disease itself.’ And he said, ‘Well, nothing exists.’ And he was right. This was 2001. There was barely anything even on NCI’s [National Cancer Institute’s] website about liver cancer.
“It definitely stuck in my mind that this is crazy that this information is not in layman’s terms and readily available. So from the very beginning, the very first year, we created patient materials. The education piece is so important. You make different decisions when you actually understand what’s going on in your body.”
Aside from a wide variety of educational materials relating to liver cancer and links to helpful resources for patients and providers, Blue Faery provides the opportunity for participation in an online community forum for both patients and their caregivers.
It’s a place where experiences can be shared, questions can be asked, and much-needed support can be given among those who share the reality of living with HCC, all in a safe forum that complies with HIPAA (the Health Insurance Portability and Accountability Act).
The website points to what many suffering from cancer long for: “Support from people that have had or are going through the same challenges as you provides something that doctors and medicines cannot—true understanding.”
Advocacy Makes a Difference
The organization also encourages patients and their caregivers to become effective advocates for themselves or their loved ones, through education, access to a multitude of available resources, and in some cases encouraging second opinions. The U.S. health care system is complex and can be difficult to navigate, even more so when faced with a devastating diagnosis. Patients often don’t know which questions to ask, or how to effectively keep track of the tangle of appointments, lab results, and treatment recommendations, let alone insurance policies and alternative options.Ms. Wilson Woods also points out that electronic health records often are not shared efficiently between different providers, placing the burden on the patient to inform multiple health providers about what happened at previous appointments.
However, informed patients can advocate for themselves, or have family members, friends, or other trusted people advocate for them. Advocates can help and support patients in many ways, including coordinating and keeping track of appointments, asking questions that the patient may not think of or is afraid to ask, keeping copies of medical records orderly and at hand, and helping with billing or insurance questions.
Ms. Wilson Woods said of health advocacy: “It’s everything. The patient doesn’t necessarily have to be the advocate, but they have to identify the person who will be that advocate for them when they’re too tired or ill. Sometimes it’s a spouse, sometimes it’s not, sometimes it’s an oldest child, sometimes it’s a sibling, it really varies.
“But they have to have that person who will write down everything, that will keep everything organized, that will be at every appointment. It’s everything to advocate for yourself. It really, really is.”
Organizations such as the National Center for Health Care Advocacy formed in response to a need to help patients make informed decisions and navigate the increasingly complex health care system and provide links to professional health care advocates. For elderly patients in particular, whose health needs often become more complex—having a designated advocate can help provide another set of ears to process and help explain complicated terminology, and relieve the burden of making decisions alone. They can also speak up when something is unclear or feels “off.”
“I think every patient doesn’t need a formal patient advocate, but they do need someone to be there with them, and fight those battles for them,“ Ms. Wilson Woods said. ”Because their focus needs to be on getting well, and feeling better, or getting to the next milestone.”
Tips for Informed Decisions
Whether you’re the patient or the one caring for a loved one with a serious diagnosis, learning to ask questions and get all the information necessary to make the best decisions possible is crucial. Keeping the following tips in mind can help.1. Research Ahead of Time
Take some time to learn about the condition as well as common treatment options. Also, learn the ins and outs of any applicable insurance policy and how billing works.2. Ask Questions
If you’re helping a loved one, inform yourself about the health condition, and also find out what their personal wishes and concerns are.Deb Gordon, co-founder and chief executive officer of Umbra Health Advocacy, told The Epoch Times: “To advocate for a loved one in their health care encounters, it’s critical to start by understanding your loved one’s wishes, priorities, and concerns. What are their questions? Those are the questions you should be focused on when you’re with them during a health care visit or hospitalization.”
3. Keep Organized Records
Especially when working with multiple providers, it’s crucial to keep records straight and easily accessible. Ms. Wilson Woods encourages patients to manage their records the low-tech way—print a copy of every appointment summary or prescription, and keep it in a binder.“You really need to print everything out,“ she said. ”Every single thing. The beauty of doing that is that you put it in a binder and then that binder goes wherever the patient goes. So let’s say the advocate for that patient for whatever reason can’t take them to a doctor’s appointment. Well, the binder can go with the patient, or the person taking them to the appointment, and so that binder is gold, and will have everything in it.”
Planning for appointments will be easier when the patient is fully informed.
“Keep in mind that health care visits are usually too short, so definitely prioritize your questions or discussion points,“ Ms. Gordon said. ”If you can’t get through everything, make sure you’ve covered the most important ones. Be respectful. Ask for clarification. Listen. Be firm if you need to be and stand up for your loved one who may not be able to do so for themselves.”
Advocating for yourself or a loved one is an important part of having the best possible health care experience, and it helps ensure a fully informed patient and a collaborative partnership between patient and provider.
