End of Life Conversations for Those with Mesothelioma

Mesothelioma is a terminal cancer caused by exposure to asbestos. Asbestos was widely used in many products and trades until the mid 1980’s, when many of its uses were banned or became highly regulated. Asbestos is a known carcinogen, and exposure can cause many serious illnesses, including mesothelioma. 

 

Mesothelioma develops when asbestos is inhaled into the body and lodges in the lining of the lungs (pleural), the heart (pericardial) or the abdomen (peritoneal).   Often the illness is not diagnosed until it has reached advanced stages because of the long latency period between development of symptoms and first exposure and because symptoms of mesothelioma are very difficult to identify.   For many, the time between diagnosis and end of life is short, anywhere from a few months to a couple of years. Life expectancy beyond a year is considered to be quite rare, although much research into new treatments may change this in the future.

 

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 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.

 

We provide these articles in hopes that offers understanding, comfort and support to anyone diagnosed with mesothelioma, and for loved ones.  For more information, please call toll free 1-800-440-4262.