Mesothelioma is an aggressive form of cancer that concentrates on the layer of tissues surrounding the internal organs. The disease is usually caused by asbestos exposure (according to the American Cancer Society, eight out of 10 cases can be traced to asbestos inhalation). It is rare, hard to treat, and the survival rates are daunting, so a patient who receives a mesothelioma diagnosis needs as much support as you can provide.
As patient educators, nurses can help to significantly ease patients’ fears and uncertainties. Below are some strategies to help you support a newly diagnosed mesothelioma patient, prepare them for living with this cancer, and encourage them to be active participants in their own treatment.
Mesothelioma Basics: Causes, Symptoms, and Treatments
Symptoms: There are four types of mesothelioma, all of which affect different areas of the body. However, pleural mesothelioma is the most common and is found in the lining of the lungs. The most common symptoms of mesothelioma—regardless of the type—include:
- Chest pain
- Coughing and wheezing
- Abdominal pain
- Difficulty breathing
- Fatigue and muscle weakness
- Fever and night sweats
- Fluid buildup
- Loss of appetite
- Unexplained weight loss
Diagnosis: It could take anywhere from 10–20 years after being exposed to asbestos for mesothelioma to develop. This can make it difficult for patients to remember when and where they were exposed— in part because the disease is often detected in the later stages. Also, the prognosis for mesothelioma is poor, with a life expectancy anywhere between 18 to 31 months.
Treatment: Current treatment options for mesothelioma include surgery, chemotherapy, radiation therapy, or a mix of the three. However, there are clinical trials that are continually being done to make advancements to these treatments.
Starting on the Right Foot: Educate, Communicate, and Guard Against Misinformation
Nurses and health professionals are responsible for assessing how the patient is feeling physically and emotionally, educating them and their families about treatment plans and potential outcomes, being aware of the patient’s lab results and medical history, and instructing them on where they can find support groups and further information.
Before you start relaying information to your patient, you’ll want to figure out the patient’s health literacy—their ability to understand health information. It’s important for nurses to know about health literacy because it improves communication with the patient and can greatly improve the outcome of their disease. If your patient is constantly missing appointments, giving excuses for why they can’t fill out their forms or read materials or are behaving overly nervous or indifferent, then they may have a low health literacy.
A lot of the information associated with mesothelioma can be upsetting and confusing.
Listen to patients if they say that they’re done learning for the day, and avoid overloading them with information all at one time.
In explaining a cancer diagnosis, avoid polysyllabic medical terms and jargon (but do point patients to a good glossary, so they can “study up”). You should also try to answer common questions about mesothelioma (even if the patient tells you they don’t have any) to steer them away from 2 am Google sessions leading to dubious sources. Key questions to cover are:
- What other tests will they need before and during treatment?
- What are the goals of the treatments? Are they palliative or do they aim to cure the cancer?
- How will the patient know when treatments are working?
- How will treatments affect their everyday activities?
Lastly, nurses and healthcare providers should utilize teach-back to ensure that the patient understands the information they were given. Have them explain their disease, treatments, and other information as if they were discussing it with a friend or family member. Use this time to clear up any misinformation that the patient may have.
Get a Handle on their Learning Style
Everyone has different learning styles, so your education efforts should align with how the patient learns best. Find out what sort of learning materials s/he finds easiest to absorb.
Ask them if they would rather have their information given to them via text, video, audio, or in person. You could also ask if pictures, charts, and models are more helpful than just written words. Often providing the same information in multiple formats is the most effective way to share information.
Lastly, make sure that the patient’s family and friends have access to this information as well. These people act as a support system for them and will be able to help them remember facts once they’re at home. Give them the opportunity to ask questions, and give them materials to study. Include them in demonstrations and instructions.
Practice Your Caritas Processes
Mesothelioma is an aggressive disease that has a low survival rate. This is a scary fact, and your patient may be having a difficult time accepting it. It’s important to be sensitive to their feelings and to allow them the time to absorb the gravity of their disease. Here, more than ever, you will want to practice the classic Watson Caring Science principles such as being present, compassionate, sensitive, coaching, and understanding a patient’s need to express both positive and negative feelings.
You want to give your patient realistic expectations on how mesothelioma will affect their lives. However, you don’t want to use fear tactics to encourage them to do treatment or follow medication instructions. Instead, focus on the positive outcomes of them following these instructions.
Be mindful that a lot of the information associated with mesothelioma can be upsetting and confusing. Listen to patients if they say that they’re done learning for the day, and avoid overloading them with information all at one time. Following these practices will ensure that your patients will are well informed about their condition and the treatment options that are available to them.
Resources on Mesothelioma
To learn more about mesothelioma, check out these additional sources:
- Handling Your First Talk with a Newly Diagnosed Mesothelioma Patient - August 13, 2021