Category: Nurse’s Corner
Mesothelioma Treatment Goals May Change as the Disease Progresses
We are all goal-oriented in some way, although some more so than others. When patients are diagnosed with mesothelioma, their goals of care are discussed. No one wants the mesothelioma patient, or their family, to suffer with interventions that are not effective. The goals of therapy are individual and are, ideally, made jointly with the mesothelioma team. While goals established in a business environment usually have a timeline and benchmarks attached, for mesothelioma patients, it is not that clear cut.
When first diagnosed with mesothelioma, many people are determined to fight. They make it their mission to learn all about the disease: where to go for treatment, clinical trials, what can do they, what can their family do. Unfortunately, for many diagnosed with mesothelioma, disease progression can be rapid.
A patient I cared for this week had been diagnosed over two years ago. He and his supportive family have fought mesothelioma aggressively. Together they had been a force. Their goal was always to keep going, don’t give up. The patient had enjoyed some good times with his family and made some memories, but time and disease progression had taken its toll. He had lost weight, did not feel well, was in pain, had no appetite and was continually nauseous. He had also changed, he was accepting and quiet. His family was not. They continued to use their resources and energy to encourage the patient to keep fighting aggressively.
As the patient’s disease had progressed, the options for his therapy became limited. At this point it, it was time to take all that energy and redirect the goals of his care. Just as the family and patient had been a force of nature fighting the disease, it was now time to become a force to fight the pain and the nausea, and to make him comfortable.
People with mesothelioma all have a unique story to tell. Unfortunately, there is not a cure at this point in time. Goals should be set with the mesothelioma team, and as the individual’s disease progresses, the goals should be re-established, as needed.
My patient and his family did re-direct their goals. Now, he is comfortable, home, and they have had conversations that they never had while fighting the disease. Conversations that will become memories as time goes on.
“Disclaimers” Can Help Mesothelioma Patients Make Informed Decisions
On TV these days there are plenty of advertisements for medications. It is hard not to notice the long disclaimers at the end. Do not take if a, b, c, d! Notify your doctor immediately if you develop x, y or z. Who would take any of those medicines after they hear all that? When put in perspective, it is a very small percentage of people on these medications who develop the side effects. But the companies are required by law to inform patients with the disclaimers so they can make an informed decision.
Recently, while taking care of a mesothelioma patient after surgery, we talked about the balance of information. How much do you want to know versus how much you are told. What was the right amount of information for this patient?
Full disclosure is important so that people can weigh their options. Knowing from the outset that if you choose to have surgery, it will involve pain, it will be difficult, unpleasant and exhausting. You may or may not have a breathing tube in your mouth, a tube in your nose, tubes in the sides of your chest, and even a tube in your bladder. That it will be in your best interest to do things that you do not want to do, like walking. You will be restricted in your fluid intake. These are the basic facts. Not all of them, but important ones, about your surgical experience.
Should there be a lengthy disclaimer listing all the possible things that could go wrong? Would you feel better knowing all the possibilities ahead of time?
In my experience, most people want to know what is going on with them and their loved ones. They trust that there will be open communication and that everyone will do their best. It would be impossible to list all the possible scenarios that might happen before, during and after surgery. Everyone’s experience is unique.
Anyone with a question today about just about anything turns to Google to find the answer. During your mesothelioma journey, the information you find may or may not be pertinent to you. Sometimes the information can be confusing and complicated and not in the right context for your particular situation. If this happens to you or your loved one, ask your mesothelioma team. The journey with mesothelioma is a team effort, and hopefully, with open communication you will find the right balance of information, to make informed decisions.
My patient had found her balance, she and family members could concentrate on recovery, knowing that for her and her family, she had enough pertinent medical information, in the right context, to make her decisions.
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Mesothelioma Nurse Suggests “The Conversation Project” as End-Of-Life Resource
With the new year upon us, one resolution we should all have is to have a conversation with our loved ones about what we want to happen at the end of life. All the changes, medical breakthroughs, advances in care for diseases, do not change the fact that all of us, at some point, are still going to die. We are uncomfortable with this truth, and as a result do not make our wishes known, and most of us prefer not to talk about it.
During the last week of December, Blue Cross Blue Shield of Massachusetts announced they will begin offering “some of the newest and most comprehensive end-of life benefits in the nation, aiming to prod patients and health care providers to discuss death openly and expand services to help people live out their last days,” according to a Dec. 28 article in the Boston Globe. Medicare will also begin covering these conversations, no matter when patients want to have them.
Why are these conversations so important? If your loved ones know what your wishes are and what is important to you, it can make decision-making at a very emotional time easier for all. All our journeys through life are unique, as is a patient’s journey with mesothelioma. There are unexpected twists and turns. However, knowing what your loved one, and you want the end to look like, can make this time comforting.
To help start these conversations, there is a non-profit group called The Conversation Project. The organization’s goal is to have these conversations with our loved ones so that our wishes are followed. They offer a starter kit and suggestions on how to have these difficult conversations. The web site reports that 90% of people say that talking with their loved ones about end of life care is important, but only 27% have actually done so.
The Conversation Project would like to move these conversations from the ICU to the kitchen table. From experience I can tell you many conversations that have been held over the years in the ICU have included quotes such as: “We never discussed dying,” “He didn’t want to upset me with talking about death,” and “I always thought I would go before him.” And many more from family members too confused and frightened to be faced with this challenge.
Having these conversations before time is critical does not mean that you have stopped fighting mesothelioma, rather, it means you have taken control of an important part of your unique life.
Let’s make 2016 the year that we raise that figure from 27% to 100% and have an end-of-life conversation, in each of our own unique ways, communicating our end of life wishes to our loved ones.
If you have any questions regarding any aspect of your mesothelioma care, feel free to email me at [email protected].
When the Changes Caused by Mesothelioma Slowly Creep Up
When you see someone everyday as they undergo treatment for mesothelioma, the physical changes can start gradually. As the caregiver, you accept and adjust to the changes. As your loved one changes over time, daily, you become accepting of them, and sometimes you don’t even see them or you discount them as being anything. When you are in the throes of caring for someone, you can lose perspective on how sick someone has become. You become accustomed to the symptoms of the disease progressing.
Maybe it is shortness of breath, pallor, swelling of the lower extremities, or the patient’s physical activity that has declined. When you step back and look at your loved one, away from the hospital setting, back in familiar settings, sometimes it is shocking, that you had not recognized the changes that are now glaring. How did you not see these changes?
Probably because you have been busy administering medications, providing comfort, pushing for more and better nutritional intake. It just happened. But now others are asking why you didn’t let them know, why you didn’t call or why you kept saying that everything is fine.
The truth is that the caregiver did not see it. Many people have been in this situation: the reality is that the disease is progressing. This is difficult to see and accept.
At this point, it is important to take a deep breath. Re-focus on fighting the symptoms, but accept what you cannot change and understand that time may well be limited and precious. By just being there you are providing emotional comfort and you are helping. Express your feelings, reminisce about the past, sit quietly.
Time is precious, and it only comes once, don’t miss it.
Mesothelioma Nurse Encourages Families to Celebrate Their Loved Ones
This past month, an older couple left a big impression on all the health care team members that they encountered. The patient, the woman, was bubbly and talkative; her husband was reserved and quiet. Together they were devoted to each other with an unshakable bond. They were a team facing mesothelioma, but it was not going as planned. Through their stay, before surgery, after surgery, and through the woman’s complications, one thing was clear: they loved each other.
They are a very loving couple, they have had a wonderful life together, but now she has mesothelioma and he is helping her. Their goal was to be home for the holidays. To have one more Christmas and to welcome in one more New Year in their own home, with their family and their traditions. The road has been short from diagnosis to this point. They have followed their mesothelioma team’s recommendations, but, unfortunately, she has not responded to the treatment as hoped.
They are now facing some big decisions about what is next. As their journey with mesothelioma continues, the rhythm of their lives is forever altered. They will be home for the holidays, savoring every moment, creating memories together, as they have been before mesothelioma. Together they will face the next chapter in their lives, and together they did make it home.
As we celebrate the holidays, remember to enjoy your loved ones, celebrate the joy in life, and remember to reach out to someone who might be alone and having a hard time this holiday season.
A Happy, Healthy New Year to all!
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