Observe. Let’s say this is the decision I have to communicate to my patient. I analyze the data in front of me and come to the conclusion that the best therapy is to do nothing. To leave this patient alone and watch their disease rather than interfere. Easier said than done. I believe this is one of the hardest decisions I have to make sometimes, because we as a society have become used to the idea of doing something. Doing nothing is just not acceptable. Why is that? Pressure from guidelines and treatment algorithms, difficulty in teaching my students who are learning the concept of observation, and exceptionally hard to explain to the patient and the caregivers.
There is an itch to treat. I compare it to an itch because it is hard to ignore. I feel it. It builds up inside us telling us to do something. We just can’t stand there and watch. Even when the odds are low, or the statistics are not favorable. That irresistible feeling to do something comes roaring from the inside. Where does it come from? Why do we listen to it? I ask these difficult questions because sometimes I think I should just shake my head and say no, leave it alone Mo. I think your best option is to watch. Allow the disease to declare itself, and show you what you need to do. “I am a good salesman, about to sell you a crappy car” I find myself quoting quite a lot to patients as I navigate this decision. I don’t want my patients to feel abandoned or dismissed.
I have evolved in the way I treat my patients today. When I was younger I was eager to get a treatment plan in place for a patient. I believed that it was important to have that ready to help patients fight their disease. Over time I have also seen my decision-making change. I am more observant, waiting for the right moment to intervene with a therapy. I always hope I make the best decisions for my patients. It involves engaging the patient, the family and their goals. Slowing down and trying to let the decision be made for me by observing has proven very valuable.
To truly help you as a patient, I want to be in your shoes. So let’s reverse the roles, I am now you. Faced with a difficult disease, being bombarded with knowledge that overwhelms and intimidates. Yes I can be that person since I am vulnerable to this disease and its effects. I self-reflect to what I hold sacred as I ask the deepest parts of me. I value my quality of life, my sense of well-being, and my vitality to those around me. I do not want to interrupt my life, I do not want to be sick or out of sorts; What would change my mind to accept a treatment, cure? If that cannot happen, then why subject me to this treatment? What’s the goal? Doctor can you please answer me? What can you possibly offer me that may make a difference to me? Why is it necessary to put me through this? Why do I have to suffer?
Important questions that I ask as the patient and should be asked as a doctor. Can you be me for a change? In the eyes of this doctor I seek understandings in why I have to present a treatment that may not be helpful to my patients. Perhaps the best treatment is “do not touch”……..reminiscent of the oath I took of “do no harm”.
What does that word mean to me? My patients battle daily with cancer and the therapies I impose on them. Coming in for their chemotherapy; tolerating the side-effects. They grow weaker and more tired as the cycles trudge on. It’s like doing 100 miles on a bicycle ride. The first 25 miles has me saying “I can do this”, the last 25 miles I am screaming “when will this end?” That is the closest I can come to imagining what they are possibly going through.
I watched today as I told my patient “let’s take a break, a holiday; a chemotherapy holiday”.
He looked at me and said “really?”
It is always fun for me to break this type of news. It’s when I get to really say “yes, you’re done with the therapy and your tumors are stable and not growing, I do not see a reason to push this treatment any further. Take a break”. I smile ecstatic, “stay away from Mo” (that brings a laugh). “Let me see you back in 8-12 weeks”.
“Wow that long huh?” This is usually followed by a sigh of relief, and I sometimes see a small “Mo are you sure?” or the even better look “3 months away from you, I think I will miss you.”
It tickles me to send them off. They need this break. It’s what they fought for. They go back to life; to their days, it’s a road to recovery. Like the changing seasons. On therapy, it’s like autumn becomes winter, and off therapy it’s like winter wakes up to spring. I bet you cannot guess what I look forward to the most. Go on… guess?
There is a joyous moment in my heart in meeting my patients 3 months after they are done with their chemo, and it truly is that I forgot what they looked like with hair.
Everyone in the room is quiet. I feel like the old man leaning forward looking through my glasses understanding the situation but not fully. As an observer I have seen it, can describe it but I am not experiencing it myself. No one in the room can appreciate that struggle. Three situations have made me think differently this week about cancer and what I do. So lets navigate the spheres of care. The psychological, the spiritual, and the physical realms that humans use to perceive their surroundings.
I walk into a room and pull up a chair. I feel separated from my patient because of a new unfortunate event. I start to talk. The power of words, trying to reconnect and asking politely to let me back into their struggle. My patient said to me “Mo I can handle the pain but not the emotions of this struggle”. I acknowledge this. I do not underestimate it. Anxiety and depression makes a patient alone as if orphaned by their diagnosis struggling at their core to make sense of things. The psychological scramble.
My patient sits across from me, my last one for the day I think to myself, going home soon, the day is done. Then out of the blue as I describe the cancer, I hear the words “Mo you talk about cancer very spiritually.” Revelation. Taboo, should not talk to this person about this right now, no religion allowed. That’s the training. My indoctrination. But honest that was one of the best conversations I have ever had with someone with this disease.
Challenged. My patient stares at me but does not understand. Waves at me and smiles. That innocent oblivious smile. Someone else is making this decision for them. They are in pain and the people around perceive the situation but are unable to communicate it truly and fully. How can this paradox exist you might think? In a challenged intellect perhaps where explaining the physical does not help, words are of no use and an orphan appears.
Three unique situations. Each one with no real guidance on how to approach them. Am I the pioneer then? Don’t want to be. But clearly we have to start thinking of this disease as different and evolve more holistic approaches to help those who it encompasses. Perhaps we have to explore it in places we dared not go before. Like orphans exploring parenthood for the first time.
“You got me this far” he told me. And then making it more difficult “I trust you” he added. Perhaps these should be easy words to hear and I should be proud that I was able to do something and be commended. But it’s the other words that linger “I trust you” he repeated. As I build my relationship with patients I become part of their successes, goals and their life. I am someone that they know, have shared their hardships and deepest thoughts. I am told that it is best to have barriers and not to get involved with them. I am told that I should find ways to separate me from them.
To me this responsibility, this trust is crushing. It generally sends me reeling trying to make sense of the inevitability. Perhaps now I understand the spouse and her tears. How do I comfort? With my knowledge that has failed? With my compassion that I disguise?
But it does not end there; there is a question that I have loathed. “How long do I have?”
Is there a stamp with an expiry date? Perhaps I missed it in my examinations. That is what I say out loud, angrily perhaps? Do you say you did not climb Everest when you got only half way? When you stood at the bottom of the mountain and your first words were “I cannot do this?” Now that you are half way, what should I say about the journey so far? What about the goals we reached the times we shared? Just because I could not get you to the top what should I do? That is why my patients are amazing. It’s the first statement “you got me this far” that makes me heal.
It reverberates deeply in my mind. What strikes me down to my core beyond words that I feel do not understand.
How do I say goodbye?
It’s about a mile walk from my clinic to my office. A small part of that walk is outside. Grey was the sky, a cold wind penetrated my shirt but not enough for a jacket I thought. A light drizzle of rain. I guess this is the “Ambience” of this blog. I sighed deeply as I walked, the conversation of the day speaking inside me. I could feel each step, each bone in my body ached. And I walked distracted.
“I am sorry but your insurance will not accept me treating you on this clinical trial.”
I did not go into medicine to be forbidden to treat someone with what I felt would be the best option for them. I imagined myself a rare bird stuck in a cage realizing the boundaries of the system that I existed in. My wings unable to soar. My perceived freedom now defined by outward forces beyond my control. I felt the bars close in and force my decisions. A slave to the system that I have now discovered is not easy to navigate. “This is all I have to treat you with”. I did not even want to be in the room anymore as I spoke to this human. Where did my compassion go? I longed for the freedom to decide the best treatment. I wanted to soar and my anger rattled me. I flew into the bars wanting them to bend. I felt the imposition of the system. Where are the tools to help my patient today? This is coming from someone who does not take “no” lightly.
I walked to my office, and talked to my boss. An incredible man to say the least. He let me talk. Like a cushion he absorbed this shock. This is not the first time that this has happened.
I have always liked the political cartoons of the past. They speak volumes in pictures. Intelligently portraying the issues of the time. I sat and read some of the “Far Side” cartoons on my couch. Humor a mature psychological defense mechanism like an old teacher showing the way.
Here is my picture for you- “Imagine”:
That despite this cage; this bird today sang.
I still found a way to deliver my care.