When it was announced on Sunday April 15th that Barbara Bush, the wife of one President and the mother of another, would be receiving comfort care, there was confusion as to what that meant. Comfort care refers to focusing on the symptoms of a disease and not focusing on curing the disease at the end of life. Hospice and palliative care are forms of comfort care. Comfort care is about maintaining dignity and managing patient’s symptom and maximizing the quality of the time that a person has left. The goal is care and not a cure of the underlying disease. There is a shift from fighting the disease to fighting the symptoms, the pain, and shortness of breath or whatever the symptoms may be.

The decision to change the focus of care is a personal one. Mrs. Bush chose to stop trips to the hospital for further aggressive treatment. Her choice and the choice of any patient who choses comfort care at the end of life, does not mean the patient is not cared for. We are all mortal, we all have a limited time on this earth. Although we know this in our head most of us avoid talking and dealing with this inevitable conclusion to our time on earth. Mrs. Bush announcement included a quote, “Life has been good and while more would be great this is enough.”

By opening up the conversation regarding care at the end of life it brings attention to a topic that most people are not comfortable with, our own mortality. April 16th, 2018 had been declared National Healthcare Decision Day. Medicare has a Voluntary Advance Care Planning benefit for people to make important decisions that give them control over the type of care they receive at end of life, and when they receive it. There are organizations that are trying to bring the importance of thinking about end of life issues and what our wishes are, to the forefront. The Conversation Project, End of Life Resources for Patients and Families, www.caregiver.org, www.nia.nih.gov, are all resources that can be used to start the conversation.

The choice is a one that not all family members arrive at or understand in the same time frame. Some patients look upon this decision as empowering. There is also some confusion as some patients and family members look upon this as “giving up.”

For many patients with malignant mesothelioma the end of the journey may come after months or years of dealing with disabling symptoms, along with having some quality time. It is very important that you speak to your medical team and make your wishes known.

Thank you, Barbara Bush for sharing so much of your private life and most intimate wishes.
Because of you this will give the power and courage to help people guide themselves through the pathway to the end of life. Hopefully the door has been opening to change the culture to openly talk about what matters most to all of us at end of life and share it with our loved ones.

“All human beings are born free and equal in dignity and rights.” In 1948, after World War Two this declaration with the Universal Declaration of Human Rights, it is thought of as the beginning of the modern-day human rights movement.

Dignity is the one thing we all value and take for granted. We just assume we are going to function independently and our goals will be met. Diseases like Mesothelioma try to rob individuals of their dignity. It is hard as a loved one to witness a person struggle and not jump in and take over. I have watched an individual over the last few months become plagued by the disease and continue to maintain his independence and dignity. From an outsider’s viewpoint everything seems to be such a struggle and it is heartbreaking to watch. We recently had a conversation about some of his activities that he does independently. As he explained to me, the physical symptoms are the hardest. Shortness of breath is one and the fluid has made his mobility almost impossible. There are a few activities that he still enjoys and feels he can still do. As he continues to control his medical journey independently he has learned to ask for help when needed. The activities that he performs independently he hangs onto and is unwilling to give up despite the thoughts of others. Perhaps his family or friends could do it quicker or better, but he still can do it. We must respect what people can do despite how it appears on the outside. We all need to know we can perform somethings independently.

As we watch so many people battle with their illnesses we realize all we really can do is support them. Sometimes just watching can be the hardest but possibly the most important. Often, we can be guilty thinking “if that was me I would do this.”. Truth be told I believe no one really knows what they would do. For this individual he continues to fight despite what others think he should do. The one thing Mesothelioma has not stolen is his power to make decisions about how he will travel through his journey. Choices are freedom and he continue to make these for himself.

This has to be one of the hardest parts of watching someone deal with Mesothelioma, how it steals someone’s self- worth. How do we help someone preserve this component that makes us all individuals? Being able to care for ourselves independently gives us self-worth. For this person the mere task of dressing, putting on shoes, still provides self-worth. It would be easier for a loved one to step in and do some or all of it, and sure would be quicker, but we must allow a person to continue to provide himself with the simple tasks of caring for himself. No doubt the fight and will are still there so we must support these people. Taking over for a loved one who is having difficulty with anything can dash their hopes and dreams. If we don’t allow patients to try, then what have we left them with.

Being diagnosed with malignant mesothelioma is a life altering event. How does one handle and function when facing the voice in your head that cannot be turned off? A growing number of patients are finding relief in a way of thinking known as mindfulness.

One definition of mindfulness in Psychology Today is: “Mindfulness is a state of active, open attention on the present. When you’re mindful, you carefully observe your thoughts and feelings without judging them good or bad. Instead of letting your life pass you by, mindfulness means living in the moment and awakening to your current experience, rather than dwelling on the past or anticipating the future.”

Mindfulness is a way to “rewire the brain for the better.” This is not a new technique it has roots that go back thousands of years to Buddhism and Hinduism. The modern-day movement is thought to have started in the 1970’s. In 1975 the Insight Meditation Society was started by 3 people. Another leader is Jon Kabat-Zinn is credited with starting the conversation regarding the clinical effects of mindfulness. In the late 1970’s he founded the Center for Mindfulness in Medicine Health Care and Society at the University of Massachusetts Medical School in Worcester Ma. He currently is a Professor of Medicine Emeritus at UMASS. He developed a stress reduction and relaxation program called “Mindfulness- Based Stress Reduction” (MBSR), putting mindfulness in scientific context. His program is 8 weeks long, mindfulness-based stress reduction, and continues to be taught and practiced.

Mindfulness must be practiced. It is not something that clears your mind of all thoughts and concerns, it is not a way to relax. It takes time and practice to incorporate it into your life and get results. It helps both the mind and spirit. Meditation is a part of mindfulness.

There are classes available to learn about mindfulness. Cancer Centers, or Centers for Integrative Health Care, might have one available or be able to tell you were the nearest one is. There are classes available on line, books, apps, all different ways to learn about mindfulness.

One book, Mindfulness- Based Cancer Recovery, by Linda Carlson, includes research that shows mindfulness can lead to a 65% reduction in stress symptoms, has a measurable biological affect, slows the cells aging and maintained the shortening of telomeres. According to Carlson, “the goal is to focus on the events in your life as they are instead of ruminating about what could have been or what might still be.”

In a 2017 pilot study a researcher from the Mayo Clinic, Robert Benzo MD, found that people with lung cancer who practiced mindfulness before and after lung surgery, had fewer complications and better lung function.

A study published by Britta Holzel, a research fellow at Harvard and Giessen University in Germany, demonstrated that through meditation, the brain was able to create new gray matter. Practicing meditation can play an active part in increasing our quality of life, while helping reduce a number of symptoms.

People diagnosed with malignant mesothelioma and their loved ones are under enormous stress. Practicing mindfulness may be a way of letting go what you cannot change and become comfortable in the present moment.