The Voice

Elevating the Patient’s Voice in Lung Cancer Treatment

By Grace Ballenger

Faced with a frightening diagnosis, an onslaught of technical and medical information, and a variety of treatment options, people with lung cancer can often feel that their voice and needs get lost. However, a combination of self-advocacy and help from others can aid those diagnosed with lung – or any other – cancer make sure their voice is heard throughout treatment.

While every person with cancer has different opinions and priorities following their diagnosis, a 2018 survey of more than 450 cancer patients found that they valued maintaining their independence (which included having strength and energy to care for themselves and having agency to make their own decisions) and communicating with their healthcare team in a way that is honest as well as understandable for someone who is not in the medical field.

Areas in which patients feel they don’t have a voice.

The survey found that many patients ranked honest conversations with their health care team among the most important priorities and felt that they had a lot of control in that area. Other factors, like whether their cancer would recur, end of life planning, and financial stressors brought on by their cancer, were also important, but were areas where patients felt that they had less control.

In 2020, the Cancer Support Community updated its 2018 research with results from a survey of the more than 2,500 patients in their Cancer Experience Registry. They found that 1 in 3 patients felt they did not participate enough in their treatment decisions, and only 1 in 2 felt prepared to discuss treatment options with their doctor. Although many patients valued honest communication with their medical team, 1 in 3 did not tell medical professionals about a side effect or symptom. There were also lapses in how doctors and nurses communicated, as 4 in 10 respondents felt they did not have information about long-term side effects of treatment, and the same number felt unprepared to manage those side effects.

The 2020 survey by the Cancer Support Community also included a breakdown of responses from 299 lung cancer patients. Among those patients, 65% felt involved in making decisions about their treatment, but only 39% felt ready to discuss their treatment with a doctor.

What is self-advocacy?

One effective way for people with cancer to address some of the worries and difficulties they face is self-advocacy, which author and cancer survivor advocate Dr. Lynne Eldridge defines as patients taking an active role in their diagnosis and treatment plan. This includes understanding their diagnosis and asking about and considering the risks and benefits of different treatments. The Cancer Survivor’s Handbook from The National Coalition for Cancer Survivorship (NCCS) defines self-advocacy as patients gathering the skills and tools they need to assert themselves and communicate clearly about their care needs, so they have more control over the circumstances. The handbook emphasizes that it is important for patients to be involved in their treatment choice because each person uniquely understands what’s best for them, and which side effects they can tolerate.

Advantages and disadvantages of self-advocacy

By helping people to find their voice and empowering them to make sure it is heard, self-advocacy can improve communication. Dr. Eldridge points out that when patients direct their cancer care plan, it can help reduce some of their anxieties and fears. At least one study of women with advanced cancer found that self-advocacy improved their quality of life and reduced the burden of symptoms.

However, self-advocacy can also be difficult. Some people are not naturally assertive, or dislike confrontation, which may make them hesitant to advocate for themselves. Others may be shy or feel inarticulate and have trouble speaking up for themselves. In addition, many people are raised to be a “good patient” and not ask too many questions that seem to be challenging medical authority.

It seems startling that a third of cancer patients underreport their symptoms, but many may fear coming off as hypochondriacs, or reporting strong symptoms too quickly for fear that later symptoms may be dismissed. Other patients may not have the time or energy to research different treatment options.

How patients can advocate for themselves (if they want to)

Although self-advocacy may not be for everyone (and we will address solutions for those who do not feel comfortable with self-advocacy in the next section), here are some tips on self-advocacy for patients who do want to consider it. The NCCS breaks self-advocacy down into four key skills: information-seeking, communication, problem-solving and negotiation. Dr. Eldridge and the National Coalition for Cancer Survivorship also provide sequential steps for how to self-advocate, but it may be helpful to consider the steps in terms of those four functions as well.

Dr. Eldridge suggests that patients do the following when they are diagnosed:

Learn about their cancer. This includes reviewing any information that the medical team provides, doing online research from trusted resources (more on that below), or reaching out to a cancer patient group that knows the latest trends in cancer care.
Ask questions. It often takes a lot of clarifying questions to understand cancer as someone without a medical background. Appointments can be a crucial place to ask questions, and Dr. Eldridge suggests that patients not leave appointments until they feel that they understand the answer to every question they had. She also recommends keeping a list between appointments with less-urgent questions.
Get a second opinion (and a third if needed). Between 2011 and 2015, more new drugs for lung cancer treatment were approved than in the 40 years prior. It’s difficult for every doctor to keep up with every new treatment and clinical trial, so getting a second or third opinion from physicians who treat a lot of lung cancer patients, especially at a respected medical center, is important. In addition, if multiple medical professionals recommend the same type of treatment, it can provide patients with peace of mind about their treatment plan.
Make sure online medical advice is sound. Dr. Eldridge recommends sticking to websites that end in .org, .edu or .gov while researching a diagnosis, as these tend to be reliable organizations that are likely to publish valid information. She also recommends articles that are written by medical professionals in medical publications, and that clearly list their sources or provide places to look for more information.
Focus on making a good medical decision. There are a lot of options that are available, but it’s important for patients to remember to take their time (it’s okay to decide within a few days, or even weeks); talk to people who know them, know the treatment options, or have gone through similar experiences; and weigh the pros and cons of each treatment. Patients who do these things are usually able to make good medical decisions, and not ones that are rushed.
Approach insurance methodically. It’s important forpatients to read through their insurance policy carefully and consider negotiating with their insurance company on out-of-network care to keep costs down. They can make a case to their insurance if they believe their case should be an exception to a rule, and always call if they don’t understand a bill or see charges they don’t expect (sometimes there are mistakes in the billed amount).

Who else can make sure the patient’s voice is heard loud and clear?

If people with lung cancer feel daunted about advocating for themselves to make their voice heard, there are people and organizations that can help. Cancer groups are not only valuable sources of information, but they also provide resources like support groups, which offer patients the chance to talk to others who have or have had lung cancer.

The following organizations may prove useful for someone with a lung cancer diagnosis:

A doctor or hospital may also provide information about patient advocates or nurse navigators, who know a lot about the medical and financial context of the disease and are skilled at helping patients understand what their doctors are saying. A friend, loved one or caretaker can also be an effective advocate, as they know the patient well and can discuss with them how they would like their treatment to progress. Friends and family members who serve as advocates may not be medical experts like professional advocates, but they may have time to help with research, or be willing to ask tough questions of doctors if the patient is unwilling to or physically drained after treatment.

For patients, a combination of self-advocacy and turning to resources that are available can ensure that their voice and preferences are heard throughout their treatment process.

Resources

Amplifying the Patient Voice in Cancer Care, Cancer Support Community
Power to the Patient, Cancer Support Community Very Well Health
National Coalition for Cancer Care Survivorship
National Institute for Health