To be diagnosed and live with malignant mesothelioma is a life changing event. It is a long and winding road for many, with twists and turns that cannot be predicted or planned for. This week we saw a patient and his wife who are dealing with the end of life. He was diagnosed two years ago with malignant pleural mesothelioma. He has been through surgery, chemotherapy, a clinical trial, he has made the decision, after there were no more treatment options left for him, to enter hospice care. He has fought the disease for two years and now, he and his wife together, are trying to provide a peaceful death for him.
This sounds like something that should happen peacefully, and the way they want, at home. In talking with them, and many others through the years, this phase is uncharted for them. People are often eager to share their experiences with doctors, hospitals, and treatments, but not many talk specifically, about how they would like their final days to be.
Medicare, the country’s largest insurer, has recognized this as an issue and now provides coverage for patients to have these important conversations before being diagnosed with a terminal illness. Advance care planning is not a form to fill out, it is a process. It is not enough to say that you have an advanced directive or living will. It is not enough to think about what you might want- you need to write it down-and share it with your loved ones.
Since January 2016, the Center for Medicare and Medicaid Services (CMS) has added Advanced Care Planning to the list of reimbursable procedures. This service is a series of conversations with a healthcare professional to assist you in finding out what is important to you. Your wishes for the end of life are your right.
If somewhere in your journey with malignant mesothelioma someone hands you a form to fill out, an Advance Care Directive, know that it is something that requires thought and soul searching for you. It is not a form to be checked off – it a process that you personally need to be involved with. It is your life you decide what is important to you at the end of it!