In 2016, most of us will “Google” the topic to get information. Not all the information is right, not all the information is current, and not all applies to you and your case of mesothelioma. Information is designed to empower people. The concept of patients being an active participant in their care is one that historically has not happened in dealing with the health care system. Your parents did not question the doctor if he said that you had a disease, or needed a therapy – that is what happened. We have progressed from the past to where the medical community now is actively seeking patients to be involved in their own care – patient empowerment.
The definition of patient empowerment, from a researchers point of view, is not agreed upon as of yet. A definition from the McGraw-Hill Concise Dictionary of Modern Medicine, “patient empowerment is the providing of information regarding therapeutic options so a patient can actively participate in the decision on whether to undergo a diagnostic or therapeutic procedure, or pursue alternatives.”
Where does a person diagnosed with a rare life threatening disease turn?
Allow others in. Seek out a medical center, where you will be treated by a team of professionals. You are the focus of the team. The team should include a doctor who specializes in mesothelioma, experts in the fields of oncology, radiology, pulmonologists, nurses, social worker, and a chaplain. Have someone with you for your meetings and appointments. Have a spouse, partner, child, or friend that can listen and take notes if possible. Once presented with recommendations by the medical team, ask questions. Remember, you are the expert of your life.
The road on the journey of mesothelioma is not always smooth, simple, or what we planned. Get as much information as you are comfortable with. Engage in as much emotional support as you need. The decisions that you need to make are difficult. Be at peace that these decisions are yours to make. You have weighed your options and made decisions based on your wishes. That is patient engagement in the year 2016. Sometimes the decisions that patients make are not what is expected.
A patient from another state, this past month had a complicated post-op course. His wife had been at his side the entire time, she had lost weight, was both physically and emotionally exhausted. He had progressed and, although weak, was ready for discharge. It was assumed by the team that they would stay locally for a short while and then return home. The patient, knowing the stress his wife was under, knowing how he felt, and the amount of assistance he still needed, explored his options. He decided to send his wife home, but chose to go to a rehab close to the hospital with his team. He needed the time to focus on regaining his strength. He would not be worried about his wife, driving back and forth. She would go home and visit on weekends, with friends. They would talk frequently on the phone. When we visited him at rehab he was getting stronger, had gained a small amount of weight, was sleeping at night and did not have one complaint regarding the rehab facility. His wife was much better at home. He reported that she was able to rest and now was anxiously awaiting his return home. He was at peace with his decision to go to a local rehab and it had worked the way he wanted. Without his active participation in his care he would have returned home after his surgery. By knowing his situation and asking questions he was able to seek out and make decisions that were right for him .
Like life– things do not always go according to plan!