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.

When dealing with a diagnosis of malignant mesothelioma it is vital to take the best possible care of yourself. One of the ways to do that is to get enough sleep. The amount of sleep that can provide you with optimal physical health, optimum immune function, mental health, and cognition, is what you need to obtain. This is often easier to say and to intellectually know but to achieve can be challenging.

Sleep is a basic need of the body for physical and psychological well-being. The importance of sleep for best health cannot be underestimated. Sleep is something that has been undervalued by many of us. The amount of sleep we need varies with age. According to the National Sleep Foundation, adults age 18-64 should get between 7 and 9 hours of sleep a night. Age 65 years and older 7 to 8 hours are recommended. Infants and younger people require more sleep. Over time not sleeping, called short sleep deprivation, can lead to various health problems, including cardiovascular disease, obesity, and all-cause mortality. The immediate effects of not getting enough sleep are irritability, negativity, bad mood, inability to concentrate, short term memory loss, apathy, poor communication and questionable decision making.

Sleep and its effect on the human body is studied by sleep doctors. These specialized experts are called somnologist- from the word “somnus” meaning sleep. These physicians have additional training in the science of sleep medicine and are board certified by the American College of Sleep Medicine. The American Academy of Sleep Medicine, is dedicated to achieving optimum health through advancing the field of sleep medicine at the state and local levels.

There have been many studies conducted regarding sleep and its effects. In our culture often people admire someone who claims to get only 4 hours of sleep a night. In one study nearly 30% of adults in the United States reported that they sleep 6 or fewer hours a week.

Research has shown that long-term sleep disruptions may raise the risk of diagnosis of certain types of cancer. The findings that lack of sleep increases inflammation and disrupts normal immune function. Involved in the sleep cycle is a hormone called melatonin, which we produce with sleep, this hormone is thought to have antioxidant properties that help prevent cellular damage.

March 11-17 is Sleep Awareness Week. “Begin with Sleep” (#YourDayBeginsWithSleep), the focus of this week is to educate people about the importance of good sleep health for individuals to best achieve their personal, family, and professional goals. The week is sponsored by the National Sleep Foundation. The foundation is dedicated to improving health and well being through sleep education and advocacy.

Being diagnosed with cancer can lead to sleepless nights. In the middle of the night unable to sleep our darkest fears can seem to be reality. It is important when this happens that we realize that what we think at 4 a.m. is often shrouded in lack of sleep, and a negative hopeless frame of mind. It is important for all of us to take care of ourselves and get enough sleep for our physical and emotional well-being.

“The best bridge between despair and hope is getting a good night’s sleep.” – E. Joseph Cossman

One may ask what happens when you arrive at a comprehensive mesothelioma center. What is the difference between a local doctor and a doctor with years of experience? First of all, a comprehensive mesothelioma center offers customized treatment for each individual. This is not a cookie cutter package where everyone has the same treatment method. Every diagnosis is unique and treated individually. A person will have a battery of tests that will tell exactly where the mesothelioma is and what condition the body is in. There are a variety of options that may be presented to you. While treatments may appear similar to another person’s, I assure you no two treatment plans are the same.

Most often the hardest question asked is what do you want? As we sit in a generalized orientation meeting it is explained that this factor is just as important as any other medical decision. Some people despite how minimal or advanced their disease, want everything done. Other patients may take a different route and choose to take a more passive option. Emotionally this can be difficult. This question requires reflection and conversations with your loved ones. Most people who enter our center have decided they want some treatment but have no idea what their options are. There is no right or wrong answer, and everyone is entitled to make their own decision.

Everyone’s body is different, with its own strengths and weaknesses. This is another reason for all the tests that must be done. Each organ needs to be evaluated for the treatment plan. Some people feel that all of these tests are overkill. However, it is important to remember knowledge is power. Think of your body as a machine with its own assets. While nothing is one hundred percent guaranteed, the more information we have about your body the better we can devise a treatment plan. The other factor involves one’s mental state, what has this diagnosis done to you mentally? If your diagnosis has caused anxiety, restless nights, fear and worry, you are not alone. These emotions are real and can make you feel overwhelmed. Most comprehensive centers offer social workers, chaplaincy and psychiatrists. A serious illness like this can cause emotional issues and you are not alone. Researchers at Baylor University Medical Center have found that 77 percent of people with a terminal illness experience depression. Remember there is no right way to feel about your illness, but it is good to identify these emotions and share with people how you are feeling. Another feature of a comprehensive mesothelioma center is support groups. These centers often provide support groups related to your illness. There are other people who are going through what you are currently experiencing or have been through something similar.

At the end of the day one needs to know they made the best choices possible about their health. It really is about being comfortable about your decisions. Not everyone chooses to travel to a mesothelioma center and that is fine. Often people prefer to stay close to home because that is what works. As research and treatment options continue to progress hopefully the ingredients to a successful treatment plan will be shared and will be available to other areas of the medical community.

A diagnosis of cancer can affect every aspect of a person’s life. We know that receiving a diagnosis of a rare, life threatening cancer such as malignant mesothelioma, can cause stress for both the patient and the patient’s family. Stress can be caused by many factors, physical, emotional and social. One of the goals of the patient, family and medical team when deciding on treatment is the effect on the person’s quality of life. Is the treatment going to maintain their quality of life? The stress can be significantly increased when the patient and the patient’s family also is worried about money. There are costs associated with treatment that are covered and not covered by private insurance or Medicare. These out of pocket expenses, co-pays for medications, co-pays for doctors’ visits, parking, eating at the facility, hotel rooms, are some of the examples that patients and families have to pay for when being treated for cancer. For some the effect on their personal finances can affect their choice of treatment options and their quality of life.

The cost to a patient’s health, due to the stress of financial problems created during cancer treatments is not something that is being ignored by the health care team. The impact of finances on a patient’s cancer journey is now being studied by many health care researchers. A few facts are listed below:

– The term “financial toxicity” refers to insured out of pocket expenses related to treatment- costs. It has been found that these expenses can diminish quality of life and impede delivery of the highest quality of care. Research has identified both objective financial burden and subjective financial distress as key components of financial toxicity

– The cost of cancer care in the United States for the year 2015 was 107 billion dollars.

– Keytruda – Pembrolizumab is $14,500 per month

– In 2014 cancer patients paid nearly 4 billion out of pocket for cancer treatments- total spending on cancer-related health care 87.8 billion in 2014

– In 2015 Americans spent 284 billion on prescriptions -about 9%- 32.6 billion spent on oncology drugs- another 11.1 billion spent on supportive care treatments which help with the side effects of strong chemotherapy drugs

– Newly approved cancer drugs cost an average of 10,000 dollars per month with some therapies topping 30,000 dollars per month- patients typically pay 20 to 30% out of pocket for drugs-average years supply would cost 24,000 thousand-to 36,000 thousand in addition to health insurance premiums

– Patients report lower quality of life who have financial toxicity- studies show that patients with cancer who file for bankruptcy may be more likely to die than those who do not file

– Financial difficulties that stem from dealing with cancer have an effect on people avoiding or delaying treatments, care or drugs- can lead to stress that can lead to mental and physical health problems

– 2013 study in the Oncologist found nearly half of cancer patients with insurance cut back on their spending on food and clothing or dipped into savings to pay for treatment

– Patients that have financial difficulty also have increased mental health issues

– A report commissioned by the American Society of Clinical Oncology found 27% of cancer survivors or close relatives of a cancer patient said they skipped doctor visits or had taken other steps to reduce health costs

Some of the ways that the medical system is attempting to help patients deal with this reality is trying to identify patients and screen cancer patients for financial stress. There are navigators in most hospitals that specialize in health insurance plans, and are knowledgeable about resources available. Social workers that know the community resources available are included in the health care team. General awareness has also increased to the importance of knowing the patient and his financial concerns.

Mesothelioma patients who have financial issues need to reach out for the resources that are available to them. It is vital that they use their energy to deal with their serious health challenge, and not be drained by financial concerns.

Sources:

• U.S. News and World Report-by LacieGlover www.usnews.com/topics- July 1,2015
• www.nerdwallet.com/blog/health/2015/06/23/behind-health-insurance- premiums-continue-pay-claims
• www.ncbi.nlm.nih.gov/pmc/articles Financial Toxicity, Part I: A New Name for a Growing Problem S.Yousuf Zafar, MD. MHS and Amy Abenathy MD- financial toxicity the patient level impact on the cost of cancer care
• National Cancer Institute- Financial Toxicity (Financial Distress) and Cancer Treatment www.cancer.gov/about-cancer/managing-care/track-care-costs/financial-toxicity
• Web MD- www.webmd.com/cancer/news/20171024/many-cancer-patients-skip-treatments-due-to-cost