End-of-Life Care

Abstract

Mesothelioma is a complex disease and manifests with physical and emotional symptoms as well as social issues. These symptoms and issues can be more burdensome to those with mesothelioma, family caregivers, and other carers than other diseases. One issue that is unfortunately common is that a patient or family member of this rare disease is often treated in a setting where there are few, if any, other patients with mesothelioma. This experience can exacerbate the symptoms and problems due to isolation, lack of support, and lack of specialized services. The process of this disease has additional layers of complexity as the vast majority of people diagnosed with mesothelioma were exposed at work and the reality that the current outcome of the disease is death. This chapter presents information on how people respond to an upcoming death, the actual dying process, and after the person with mesothelioma has died. This chapter includes the typical physical symptoms that are often the hallmark of the beginning of the end of life. Information about decisions that can be made to promote as much comfort care as possible at the end of life by both the patient and the caregiver is offered. The process that must be followed after death from mesothelioma, including information on whom to call and the differences between being in the United States vs. some countries in Europe, is presented in the Addendum. The goal of this chapter is to offer healthcare professional an understanding of what the end of the disease process might look like and how patients and their families may feel and concrete tasks that can be done in the least complicated and most sensitive manner.

Addendum: End-Life-Care and the Legal Process

While the discussion on the legal process may not be germane to the direct care of mesothelioma patients due to the high mortality, elucidating the legal process as it relates to end-of-life care may be an important resource for patients and their families, because financial and legal matters may be important to maintaining quality of life for the patient and his family.

The information presented below should not be interpreted as legal advice. Healthcare professional should exercise caution when discussing the legal process with patients and their families.

1.1 Legal Process

As mesothelioma is most often the result of occupational exposure to asbestos, filing a claim for compensation is a common course of action. There is an abundance of law firms around the world who claim to focus specifically on working with people with mesothelioma. Be thoughtful about how you select your legal assistance. When filing a claim against a previous employer where the exposure took place, it doesn’t matter if the company knew they were putting employees at risk or not.

With the extended time between the exposure to asbestos and the diagnosis of mesothelioma, statutes of limitations have been revised to take this into account. The statutes of limitations are rules related to how long a person has before they must file a claim. In most cases, the time starts with exposure or when the injury took place. In the case of mesothelioma, the statute of limitations, which differs by state and the type of legal claim, the time to file ranges from 1 to 4 years from diagnosis (Hartley and Hesdorffer 2017).

There are three main routes to file a claim for the exposure that resulted in mesothelioma. The first is through a bankruptcy trust, the second is litigation, and, finally, if you are a veteran and you think your exposure was during your service, you would file veterans claim. A bankruptcy trust is a fund the companies where exposure to asbestos was known to have occurred were required to set up before they either close or claim bankruptcy to cover future legal claims. Litigation is when a lawsuit is filed with the intention of appearing in court. In many cases, these lawsuits can be settled out of court. A veteran who thinks they were exposed to asbestos while on active duty will file a claim for disability compensation through the Veterans Benefits Administration (https://www.benefits.va.gov/benefits/). You will also want to contact the VA Environmental Health Coordinator. You can find your local coordinator at https://www.publichealth.va.gov/exposures/asbestos/index.asp. There are two types of claims: personal injury and wrongful death.

When the person diagnosed with mesothelioma files a claim, it is a personal injury claim, within the statute of limitations for mesothelioma in the state you are filing. The claim can be filed to cover medical expenses, lost income (past, present, and future), and psychical and emotional pain. If the person with mesothelioma filed a claim after they were diagnosed and before they died, once the claim is settled, it becomes a part of the estate. This means that the executor of the estate will continue working with the lawyer the person with mesothelioma was working with to finalize the claim. There will likely be changes in what is covered once the person with mesothelioma dies. Since there will be no additional medical costs and the emotional distress does not continue beyond the death, the amount of the settlement may be impacted. Surviving family members can contact their local government office for state-specific information regarding legal proceedings and compensation (Hartley and Hesdorffer 2017).