Mo About Cancer

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    Is It a Choice?

    The research coordinator sat next to me and said “his insurance will only approve a phase 3 or phase 4 trial, and while this trial you are offering him is a phase 3 they have denied it anyway!” Frustrated she also added “we are in the process of appealing this, but it could take up to 30 days.” I stared into the cubicle I was sitting in. I never check which insurance company a patient has nor do I understand the “what is allowed or what is not.” I had met my patient a week ago and I counseled him with options that I felt would best serve his treatment and his goals. How do I explain that his recommended treatment is off -limits due to insurance, and we need to consider an alternative? Why should I? I honestly did not want to.

    I have practiced medicine in many different systems. In Jordan, recommendations for treatment are often coupled with a price tag. It is one of the big reasons why I do not practice there, and feel that a health care system does not need to discriminate in care based on a patient’s financial abilities. I have blogged about this hindrance previously and I do this again as I feel passionate about patient care and where it may be heading.

    In the modern health system of seeing patients in 20 min, we have to discuss an incredibly difficult and complex disease in the matter of minutes with our patients. The industry of medicine has truly become too demanding and very bulky. From a physician perspective there is a need to understand the exciting number of breakthroughs in cancer research at the same time present unbiased informed consent to patients explaining treatment options and offering a true reflection of what knowledge is out there. This is coupled with an explosion of technology, electronic medical records systems, the almost immediate availability of information, test results and expectations. The physician now faces the dilemma of appealing denied insurance claims to render his decision for the selected treatment “allowable”.

    Patient’s choices are limited by which insurance they belong to which clinical trials are available to them for cancer care. It’s the art of medicine to help the patient navigate such hard choices and ensure a good decision is made. I am a believer that everyone should have health insurance, however in our system it appears that some are better than others reminding me of the novel “Animal Farm.”

    My patient looked at me and said, “I want what you think is best for me in the treatments you have outlined for me.” This is a huge responsibility to walk a patient through a network of decisions influenced by the many changes taking place around us, yet we are being asked to do this in a very short period of time influenced by the politics of insurance companies. So I am left with a simple question today as I blog, is it a choice?

    Mo

     

     

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    Blog Holiday!

    Dear friends,

    I have enjoyed writing to you every week on my blog. We have had a few guest bloggers as well and the feedback from all of you has been great. This week I will not be blogging and will start doing that every 2 weeks with an occasional guest blogger jumping in on a break. Some of my patients would say “ Mo , you just needed a blog holiday” and I guess I am finally listening.

    Take Care

    Mo

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    “Stay out of trouble”

    “Nice to meet you Dr. Mayhem” he said mispronouncing my last name, but he had me smiling. “A pleasure to meet you too” I replied to my newly formed friend. In the background of the clinic, the laughter this word created reaches out to my depths and pulls out something I have longed to share. If you have seen me in clinic many times, my closing statement to each of my patient is “stay out of trouble.” It’s like my signature. I want to blog about what that actually means and why I say it.

    I will start by asking “the” difficult question. One you all know but maybe have never dared to ask. When a patient first gets diagnosed with cancer, be it melanoma or sarcoma or any other type, where do you think their mind goes? In my practice I have watched as my patients go to thoughts of death first. This is exceptionally vivid when I am the one who introduces this particular thought to them.  There is an awkward silence that usually follows. It is not awkward for me as I am the one being silent. This is broken on many occasions by a deep sadness, an overwhelming emotion that fills tears in everyone’s eyes who are watching. I create the space in time to accommodate and acknowledge this feeling. Silence has an end, it is not never-ending. My patients get into “trouble” trying to understand their cancer, their disease, their plan and how it is to be executed.  They are never left to do this alone. I will admit that initially they are lead to believe they are.

    Truth has a responsibility of being clear, sharp and honest. Telling a patient that they have a terminal cancer is no easy task. Yet I do that daily, begging the question from the observers of “how do you do this?”  To answer this statement of “stay out of trouble”, when asked to do the same, I end up saying “no I will not” because I am at the heart of it.  I have marveled at the psychology of the irrational fear of death that drives us towards a helplessness that cripples us to give up. I journey deep into these “hot waters” pulling my patients out of an irreversible outcome. No one does it better than the person on this journey and I end up learning so much from each of my friends as they face this certainty. So I walk beside them and find myself saying simply “stay out of trouble”.

    I usually say it as I leave the room; I point and stare deep into my friend’s eyes as I say it. I mean it; it is a real, reflex almost. I fought hard to get them out of the tribulation that they are being faced with. I want them to live fully and embrace what moments they have left. As important, I also point at those around them reminding them of the diamond that sits amongst them, that soon they may be forced to part with.

    Stay out of trouble my friends.

    Mo

     

     

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    Ambiguity

    “You have to go home, you have a blog to write” my breathless patient uttered the words as he awkwardly ended our conversation last night. I was tired, but not nearly as much as he was. Yet he was there, caring about what I still had to do tonight. It had been a long day for him, a long week to be honest and now has been admitted. Patients get admitted for different reasons. Some to get chemotherapy, others with symptoms that are hard to manage at home.

    It takes me one look at them to know that they need to be admitted to the hospital and that this is another battle they must face. Putting them in the hospital allows many aspects of their care to take place. They are right at the heart of the “factory”, with all the nurses, the physicians, the pharmacists, the medication, the machines and technology. He looked back at me and he knew that I would admit him. It was clear he was struggling and it was time to offer relief to him and his wife who cried but agreed this would be the best thing to do.

    What will happen? Is it the cancer? They and I hoped for many other things and many outcomes, something I could possibly remedy. It’s not easy to see my patients struggling with their symptoms. They are trying hard to “fight”. They get stoic and a little stubborn. I promised to see him the next day to talk over the tests that I had asked the team taking care of him to do.  The ambiguity of not knowing his outcome was a thought that floated in my mind as I went home. I am ending my night praying for a result of a vision of him feeling better.

    I walked away from the hospital, leaving my patient behind, but in the good careful hands of the staff in the hospital. I think of his words, “you have a blog to write” and I smile. Sure, I will work on my blog. He was one of my friends that read what I write every week.  It touched me that he read it, anticipated it and knew that I did that on Tuesday at the end of my day. I never know what I will write about, I just do. I let my day and mind settle. Tonight, like many nights, my thoughts are with those who are in the hospital. They linger with those that have ambiguity in what their outcome might be. It is a difficult place to be. Please know I am with you.

    Goodnight my friends.

    Mo

     

     

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    7 Days of Jim

    It was my first day to meet Jim. He walked in and sat down, a well-appearing middle-aged man. I introduced myself and said I was just going to look at his scan and I would be back to discuss what I saw. In the back room, where patients sometimes wonder what we do I examined his CT-scan. His tumor had wrapped itself around his windpipes. I made a few calls and then walked back into the room and sat in front of Jim. He barely knew me. I had a solemn stare as I walked him through the scan and my fears that this might occlude his breathing pipe soon. I explained in detail that I would like a specialist to perform a procedure to look down his pipe to see if they could give me a better assessment. I also shared that they could do this today. With a trusting tone he agreed to have the procedure done on the same day. Until today I wonder why?

    To do this procedure, he had to be placed on a ventilator –a breathing machine. I got a strange call from my specialist. “The procedure went well”, but he explained to me that they could “not remove Jim from the breathing tube”. They were worried if they did this that his lung may collapse, and he was being admitted to the intensive care unit (ICU) on a ventilator. I confess this is not the outcome I wanted. This patient came in walking and now was on a breathing machine in the ICU. I finished my clinic and made my way up to the unit to see how he was doing and to think up a plan. This is when I was met with all his family. “Get out of this one” my mind said. It was surreal. Many eyes were staring, asking me questions, wondering who I was and trying to understand why their loved one got instantly sicker after he had met with a doctor for the first time in the clinic.

    I was going nowhere; I pulled up a chair, and sat down. I talked to Jim’s family, honestly and with great care and empathy I chose my words. Jim stayed in the ICU for 7 days. During these 7 days, I watched his family’s emotions, their courage, their faith, and their gratitude. As he lay there sedated and intubated, his family made difficult choices for him. Through this tumultuous period we bonded. With their help the tumor shrank with the treatment I had thought would be best. When Jim woke up, he could not remember any of it. His voice was hoarse, he did not know me, did not recall a thing that he went through, could not understand the days that had gone. It was ironic how the diagnosis, the ICU, the procedure and the waiting was an affair of his family and not him.

    I have seen many things in my life, but the miracle of a family is something I appreciated that day.  I believe the days that Jim could not remember were long and memorable by those who are alive today. To Jim it was a mirage that we could only tell him about never felt or seen, for the family and I it was how we got to know each other.

    Mo