End of Life Care Conversations for Mesothelioma Patients

Nov 27, 2009

Mesothelioma is an incurable form of cancer that is primarily caused by exposure to asbestos.

Asbestos is a naturally occurring fibrous mineral that was once widely used in many industrial and construction products because of its insulating and fire resistant properties. Thousands of asbestos containing materials continue to exist in buildings, cars, and ships. Asbestos, when undisturbed and intact, does not pose a health threat. Asbestos only becomes dangerous when it becomes airborne and can be inhaled or ingested.

Once asbestos fibers enter the body they can lodge in the lining of the lung (pleura), abdomen (peritoneum), or heart (pericardium), causing the disease known as mesothelioma. Symptoms of mesothelioma take decades after initial exposure to first develop. Mesothelioma can be very difficult to diagnose as symptoms take so long to develop and even when they do they are similar to many other respiratory diseases or cancers.

Because of diagnostic challenges, most mesothelioma patients do not realize they have this form of cancer until it has reached late stages. Advanced stage cancer means that it can not be cured or controlled with medical interventions. At this point, most care turns towards making the patient as comfortable as possible in the final months of life.

Patients and family members most often feel quite devastated and overwhelmed when given a diagnosis of Stage IV mesothelioma. However, once over the initial shock, there are certain conversations that can be initiated that could hugely benefit both patient and loved ones. Although difficult to start discussions about dying and the end of life, research has shown that those that are able to ask questions and state desired care end up having more choice, dignity and peace as they near the end.

To help begin such discussions, the following may be used as a beginning guideline:

Find out as much information about your particular type of mesothelioma and what you can expect to occur after diagnosis. Ask your medical team about possible interventions, pain therapies, and hospice care.
Begin talking about making an advance directive which can be used as a legal document and lists all wishes regarding end of life care. Make sure the documents include very specific instructions and cover different possible scenarios that may occur.
As the mesothelioma progresses, continue to review the patient’s preferences of care and update advance care directives to reflect any changes as needed.

In addition to advance care decisions, some patients benefit from having a trusted individual or support group to talk about any regrets, fear, or concerns they may have as they approach the end of life. Asking hard questions like “If you had a chance to say something to anyone in your life, what would that be?” can help the patient feel like they have a chance to clean up any unfinished business.

Lastly, advance planning can include clarifying any legal or financial issues that may be pending so that there is less confusion or burden on loved ones after death.

Every person will have their own comfort level or desire to have these conversations. Sometimes a hospice worker, palliative nurse or clergyman can help to facilitate discussions between family members as well as other members of the medical care team.

If you or someone you know has been diagnosed with mesothelioma, please contact your local hospice agency at www.hospicefoundation.org. Also, just as you have a doctor who specializes in your particular disease, contact an experienced mesothelioma attorney who only specialized in handling asbestos lawsuits as they will be much more equipped to handle your case with expertise and efficiency.

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