What is important to you? What do you want? For patients recently diagnosed with malignant mesothelioma, these questions are difficult to put into perspective.
For many years the medical community has been “teaching” patients about diseases and medications and what you should and should not do. The doctor would order the medication, treatment and recommend therapy. The patient’s role would be to follow the instructions, fill the prescriptions, take the medications as directed, make the appropriate follow up appointments, and follow the plan of care as outlined by their medical team. This system has limited success for many reasons. It allows for none of our own uniqueness as people and does not take into account that we are all individuals with our own unique perspective, goals and dreams for our own lives. Another factor contributing to the limited success is the financial cost of all this. Over 80% of Americans that are insured have deductibles. Can a patient afford the deductibles, the possible travel to a center, the cost of the medication, chemotherapy, and the time away from the family? Is that what they want? For some medical professionals, old and young, they have not yet embraced the importance of patient engagement, partnering with patients, and asking the important questions that help a patient choose what they want, after being shown the possible medical treatments that are options for them.
What do you do with this information? No one is trying to overwhelm you, they are trying to present the information so that you can then ask and answer the important questions with your family and friends. What do you- the patient – want? What can you tolerate?
This is a process- the decisions are not made in one day.
All of this involves taking the time to listen to patients and families, listening to their stories, concerns, hopes and fears. It involves the patients honestly deciding if this is the journey that they want to embark on or would they choose a different path.
Mesothelioma patients facing very difficult decisions need support. Recently a couple in there 50’s came to our mesothelioma center. They came with some information about mesothelioma, not the latest information and were surprised about what they heard. At the beginning of the day the patient was withdrawn, her husband did the talking. She had recently been diagnosed and had been told that mesothelioma was “a death sentence, that would happen very soon.” After listening to their story, they had their appointment with the mesothelioma specialist, they left with one thing they did not have in their pile of medical records at the beginning of the day- hope.
What they decide for their course of treatment is their decision- they have heard the options- they have found a community- they have hope. What is right for them is their decision.
– Ellie
