Discussing End of Life Care with Mesothelioma Patients

Being diagnosed with mesothelioma,  a terminal cancer,  is devasting and overwhelming.  It requires great courage and support to enter into end of life conversations, and yet can be one of the most helpful things to do to ensure more choice, power and dignity about how and where one would like to spend their final months.

Receiving a diagnosis of mesothelioma, especially if it has progressed to advanced stages and is inoperable, is extremely devastating and overwhelming, causing a cascade of complex emotions.

Coming to terms with the end of one’s life can be extremely difficult for everyone. Knowing that you have terminal cancer can shake even the strongest person. It also creates the opportunity to think about end of life issues that have never been considered before.

Knowing there is no cure and that death is inevitable, mesothelioma patients and their loved ones will need a lot of support, care and comfort. Someone who can open up conversations about the cancer, and all the feelings, fears and physical challenges that will occur provides more choice and can make the process easier to cope with. Most importantly, these conversations need to take into account and be respectful of the individual’s beliefs, needs, and desires.

Many family members, friends and even doctors and members of the medical team will not know how to begin such conversations. It may be helpful to know that research has shown that talking openly and directly about matters concerning death and dying have had hugely positive impacts for both the mesothelioma patient as well as their loved ones, before death and after.

Many fear talking about dying because of a variety of fears: fear that the patient may give up hope, that it will be interpreted as giving up, that speaking of it will make it real and final (which it already is.) In truth, having conversations about ones preferences can help patients and loved ones feel more peace and more empowered during such difficult times.

Having the courage to bring up the topic of death affects how and where patients choose to die. Many would prefer to die at home and to avoid aggressive, painful measures that may or may not prolong life. Without talking about how one wants to die, mesothelioma patients are at the mercy of the medical teams decisions and family members are not given as much of a chance to better adjust to the loss. Often times, patients will feel relief at having the reality of death acknowledged, significantly reducing anxiety and feelings of hopelessness and fear.

Most importantly, end of life conversations serve to ensure that patients and family member’s wishes and particular preferences around treatment and pain management are communicated to the medical team. In this way, patients are more likely to get the kind of care they want and feelings of pain, loss, and powerlessness can be reduced.

Everyone needs help to have such difficult conversations, but by having the courage to talk about dying, the patients’ wishes can be discovered which usually eases the process and can create stronger relationships not only between loved ones but also with the health care team and mesothelioma specialists.

Many are willing and wanting to discuss issues of death and dying. They are grateful for the opportunity to resolve family matters, discuss end of life wishes, utilize spiritual resources, and reflect on their lives and choices they have made. Often such conversations will strengthen relationships.

For family members, questions and practical matters can be explored, such as funeral arrangements and financial and legal issues. This can be extremely helpful in easing the grieving process after losing a loved one.   Hospice workers are experienced in facilitating such conversations.

Please check out our articles under Living with Mesothelioma.  We offer these in hopes that they provide information, comfort and support to anyone diagnosed with mesothelioma, and for loved ones.   If you have been diagnosed with mesothelioma and want help

Why Mesothelioma Patients Encouraged to Discuss End of Life Care?

esothelioma (or, more precisely, malignant mesothelioma) is a rare form of cancer that develops from transformed cells originating in the mesothelium, the protective lining that covers many of the internal organs of the body. It is usually caused by exposure to asbestos. The most common anatomical site for the development of mesothelioma is the pleura (the outer lining of the lungs and internal chest wall), but it can also arise in the peritoneum (the lining of the abdominal cavity), and the pericardium (the sac that surrounds the heart), or the tunica vaginalis (a sac that surrounds the testis).

Most people who develop mesothelioma have worked in jobs where they inhaled asbestos, or were exposed to asbestos dust and fibers in other ways. It has also been suggested that washing clothes of a family member who worked with asbestos increases their risk for developing mesothelioma.Unlike lung cancer, there seems to be no association between mesothelioma and tobacco smoking, but smoking greatly increases the risk of other asbestos-induced cancers. Some people who were exposed to asbestos have collected damages for asbestos-related disease, including mesothelioma. Compensation via asbestos funds or class action lawsuits is an important issue in law practices regarding mesothelioma (see asbestos and the law).

Signs and symptoms of mesothelioma include shortness of breath due to pleural effusion (fluid between the lung and the chest wall) or chest wall pain, and constitutional signs such as unexplained weight loss. The diagnosis may be suspected with chest X-ray and CT scan, but must be confirmed pathologically, either with serous effusion cytology or with a biopsy (removing a sample of the suspicious tissue) and microscopic examination. A thoracoscopy (inserting a tube with a camera into the chest) can be used to acquire biopsy material, and allows the introduction of substances such as talc to obliterate the pleural space (a procedure called pleurodesis), preventing more fluid from accumulating and pressing on the lung. Despite treatment with chemotherapy, radiation therapy or sometimes surgery, the disease carries a poor prognosis. Research about screening tests for the early detection of mesothelioma is ongoing.