Over the last several years, patients diagnosed with pleural mesothelioma or peritoneal mesothelioma have benefitted from a new member of their cancer care team: The patient navigator. Patient navigators are invaluable guides through the healthcare journey, smoothing the way for those facing a new reality and taking on numerous tasks to make things as easy as possible amid tremendous emotional, physical, and financial challenges.
What Is a Patient Navigator?
The American Cancer Society may say it best: A patient/cancer navigator “connects a person with cancer with the help and support they need.”[1] Patient navigators are staff members within oncology departments who are there to help patients and their families overcome the various obstacles they are likely to encounter following a patient’s diagnosis — and in some cases before they get a diagnosis.
Most cancer patient navigators are oncology nurses or other medical professionals with clinical expertise. Their training is geared towards improving communication and collaboration with the care team, helping patients make informed decisions. They work to overcome the fragmentation and complexity that is often unavoidable within cancer care.
Though the patient navigator role was historically created to help reduce barriers for the medically underserved, it has evolved to address the needs of those whose cancer presents at an advanced stage or represents a poor prognosis with decreased survival.[2]
The service provided by patient navigators has come to be recognized as an integral element of high-quality, patient-centered cancer care. Cancer patient navigators are on staff at almost every NCI-designated Comprehensive Cancer Care facility, and many specialized care programs – including those for mesothelioma – employ navigators who are specifically trained to the complex needs of their patients.
What Does a Patient Navigator Do?
Patient navigators take on a wide range of responsibilities meant to alleviate the burdens faced by cancer patients, their families, and their caregivers. From improving access to screening and arranging for diagnostic appointments to coordinating patient care with multiple physicians and modality centers, patient navigators provide comprehensive assistance, including communication with healthcare providers; information on symptom management; financial, legal, and social support; and coordinating with insurers.
How Does a Dedicated Patient Navigator Help Mesothelioma Patients?
A dedicated patient navigator’s job is to offset the fear and confusion that comes with a mesothelioma diagnosis. In the face of an overwhelming situation and fear, they are there to be a voice of calm and provide the resources patients and their families need, including:[3]
- Educational resources about malignant mesothelioma, whether pleural mesothelioma or peritoneal mesothelioma. A mesothelioma patient navigator will provide information on what causes malignant mesothelioma, potential treatments your care team may recommend, access to clinical trials, and ways to manage stress and daily needs. They will also help address issues surrounding survivorship and taking ownership of your care.
- Employment is often a significant concern for mesothelioma patients and their caregivers. Mesothelioma disrupts lives, and the patient navigator can help find ways to accommodate the illness and its treatment. This may include help accessing available benefits and programs like the Family and Medical Leave Act (FMLA) and disability benefits, or suggestions for flexible work arrangements that meet the needs of both the patient and their employer.
- Financial assistance is often needed when facing a devastating illness like malignant mesothelioma. Patient navigators can help you identify resources specific to your situation and need and can help with the application process and any medical documentation that’s needed.
- Medical insurance is complicated at the best of times, but in the face of catastrophic medical bills, the process of seeking reimbursement can be overwhelming. Patient navigators can help decipher your coverage and copays and refer you to others who can provide more assistance if needed.
- Local resources are available within every community, but may not be readily identifiable to the family of a mesothelioma patient, especially if they have traveled to an unfamiliar location to access care at a major metropolitan hospital. These organizations are well known to patient navigators, who can refer you to their services based on your needs.
- Lodging that’s close to the major academic teaching hospitals that offer the best mesothelioma care can be expensive, but there are several programs specifically available to cancer patients and their families. The patient navigator will be able to connect you with several options.
- Navigation refers to more than a patient navigator’s title! They can also help you find your way around the medical campus, whether your questions are about parking or the location of various appointments and physician offices. They can also help you with transportation to and from your lodging, and even to and from home.
Mesothelioma Patient Navigators Free Patients and Their Family Members to Focus on Their Care
A diagnosis of malignant mesothelioma affects more than just the patient. It also places a heavy physical, emotional, psychological, social, and financial burden on the patient’s caregiver, whether that is a spouse, adult child, other family member, or friend. Dedicated mesothelioma patient navigators can free caregivers of many of those impacts, allowing them to focus on the patient’s care.
Patient navigators make a significant improvement in quality of life, diminishing much of their distress and confusion, eliminating the sense of being overwhelmed, and empowering them to actively and more confidently participate in their care. They inform, educate, and eliminate the distractions created by extraneous details. They significantly add to the value of the care patients receive from the multidisciplinary mesothelioma team.
