Discussing End of Life Care with Mesothelioma Patients

By Sally Clapper

Mesothelioma is a rare form of cancer that begins in the mesothelium, or thin lining on the surface of the pleura (lungs), peritoneum (abdomen), or pericardium (heart). Malignant mesothelioma is primarily caused by asbestos exposure.

Asbestos is an insulating, fire-resistant material once commonly used in all types of insulation, ceiling and roofing products, brake linings, and cement. Currently, about 2,500 to 3,000 new cases are diagnosed in the United States each year with higher numbers occurring in other parts of the world.

Mesothelioma is not easy to accurately diagnose. Because of a long latency period between initial time of exposure and development of symptoms of mesothelioma, patients are usually in their 50's to 70's at time of diagnosis. In addition, mesothelioma symptoms are often missed or misinterpreted to be a different form of cancer or breathing illness. It is common that mesothelioma is not identified until after the cancer becomes widespread.

For many mesothelioma patients and their family members, there are months of struggle in finding out the diagnosis and then going through medical interventions, only to find out that the cancer is too advanced for further treatment. "Advanced mesothelioma" means the cancer has spread to other parts of the body and can not be cured or is beyond the stage of responding to any kind of therapy.

Finding out that there is no cure or treatment and that you have less than a year to live can be overwhelming and distressing. It can be very difficult for everyone to accept that most patients with advanced mesothelioma have only months to live.

Once over the initial shock, there are some things that a patient and caregiver can do to help during such difficult times. One is to learn as much as possible about what to expect and also explore options where choices do exist. Another is to continue to demand excellent care from your medical team and on-going support from others. Talking about any concerns, as well as any regrets and specific wishes you may have can be very helpful. Make sure to write down how you wish to live and how you wish to die, and enlist the help of others to make sure this happens. Having a support group to share any feelings and express grief can be hugely supportive.

Other avenues to explore are whether there are any existing treatments that could slow the progression of the disease or help alleviate any pain or side effects. Palliative care and hospice workers should be able to help keep the patient in as much comfort as possible. Find out from your oncology specialist what other options may exist in your area.

Standard therapies (radiation, chemotherapy, and surgery), alternative treatments, hospice and/or home care are the typical options for patients diagnosed with Stage IV mesothelioma. Usually your medical team, made up of doctors, nurses, family members and yourself, will make choices based upon your specific situation and needs. Advance care directives will help to make sure that everyone follows your wishes about treatments and interventions up until the end.

Cancer takes a toll on everyone, physically and emotionally. Being able to have conversations about dying can sometimes help patients as well as loved ones to experience more control, dignity and peace. It helps to have strategies in place and a good support network. Advance planning can help relieve any financial, legal or emotional burden on your loved ones and help them in their own grieving process. It can be hard to bring up topics related to death. Yet, talking about death openly can be essential to avoiding potential problems later.

It can be very challenging to have or know someone who has advanced stage mesothelioma. At the same time, some use it as an opportunity to resolve unfinished business, heal old wounds, realize what is most important, and focus on moments of love, joy and gratitude. Everyone will have a different reaction and approach to death. Be respectful that some patients and loved ones will be more comfortable than others with having open conversations about dying and end of life care.

If you need help with the costs of medical treatments and getting financial compensation, contact an attorney who specializes in asbestos litigation and mesothelioma lawsuits. Like physicians that specialize in treating asbestos related cancers, a mesothelioma lawyer will have expertise that more effectively and quickly gets you and your family the help you need.

Many patients and caregivers wish they had known to ask certain questions before the cancer had progressed too far. If you have been diagnosed with late stage mesothelioma and want to have the most choice in the months ahead, please do not hesitate on having these conversations. - 30540

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