“Despite what some people may tell you mental illness is a disease and it can complicate the care of the patients you treat” – wise words from a nurse named Nicole on my Transplant Surgery rotation. We had a patient struggling to thrive after her Roux -N-Y complicated by the death of her parents 2 weeks post op. Her surgeon was growing very frustrated and was unable to fathom how she was allowing this to interfere with her health. She wasn’t thriving or obeying the rules she had previously agreed to before her surgery. Nicole commented on how it’s very tempting to judge her and discuss how she should push through and want to do better but it wasn’t that simple. We had a great conversation about the nature of depression and grief. She cautioned us not to be the doctor who doesn’t address their patients’ mental illness when treating it is guaranteed to improve their health. She said she had seen depression cause everything from hospitalizations to organ rejections.
She talked about how cynicism and complete disregard towards mental illness was something she sees in a greater degree in our generation of upcoming physicians – something I hope is not true. Even if we can’t understand out patients’ mental illness we at least need to understand that it matters and it affects their recovery and outcomes. It may complicate your care or prolong your visits but mental illnesses are not something we can ignore. One of the reasons I am drawn to psychiatry is the stigma associated with mental illness even in the medical community and my desire to advocate for my patients. We advocated for this patient to have a psych consult, a very vital component to her health management.
As I move forward in my career I will endeavor to never underestimate and never overlook recommendations of team members no matter how tired or busy I may be. Nicole had sat with this patient and she had heard her story and everything she was struggling with outside of her recent surgery. She offered valuable insight that completely changed they way we viewed this patient and what she needed to best address her long term management. Nurses, PCAs, social workers are all members of the team that interact with our patients in different ways and each of them bring unique viewpoints. Patients will always be better served when the entire medical team is working together in their best interest.
This case also reinforced in me the need to always see my patients as a whole – not just a disease or a problem. We see patients in snap shots, isolated moments in time when they come to us to address a specific need. But we need to remember that they are people outside of their diseases; people with experiences, concerns and worries that can complicate their health. I truly felt for this patient and I understood her struggles. I lost my mother my first year of medical school and I understood grief. Grief is a monster that we all struggle with in different in ways but one thing it never is, is easy. Grief is not always so easily compartmentalized for the sake of your health, your relationships or even your future. And when complicated by mental illness grief becomes a whole new monster. My own struggles and those of my patients have emboldened me to speak up when I feel the situation calls for it. I may not be a psychiatrist yet but since the moment I put on my short white coat, I am a patient advocate. And I will always ensure that their diagnoses are not ignored no matter how “inconvenient” they may be.
My patient and I both shared a love of writing. She kept a daily diary following her parents’ death as a way to cope based on a recommendation from her therapist. I’ve loved writing since I was a kid. I used to write everything, from poems to my mother when she wasn’t feeling well to reflections about the world I was growing up in. When I mentioned my love of writing to my psychiatrist he recommended using it as a tool to cope and heal. The following is an essay that I wrote and got the courage to submit to our literally magazine Ether Arts about my own struggle with grief and depression. I won first prize in prose for my submission.
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The Art of Recognizing Death
It seems a simple thing that doesn’t even need to be taught especially for medical students, right?
Death can be defined in many ways, cardiac arrest or simply enough the absence of life. According to any of those definitions my mother died on March 22, 2014. But for me she died December 12, 2014. It took me almost nine months to recognize death.
I was the normal medical student in the spring of my first year of medical school pushing through a grueling Neuro block when the call came. My mom had been hospitalized again. She had been in out of the hospital numerous times leading up to that day but this time was different. The doctor called needing my consent to do an emergency surgical intervention. I dropped everything and rushed home. Thinking back now I can’t recall when I left school or how long I was gone and I have no idea when I even made it back. When I got home I knew this was not another “routine” hospitalization to stabilize her and send her back home. Her ejection fraction had been steadily dropping but now it was so low there was barely enough blood perfusing her body. She was no longer in heart failure, her heart had failed. It had reached the end of its ability to do what nature intended; it was no longer able to sustain life on its own. And as many of us know when we reach the end of our body’s capabilities we have two options: to set it free of our demands or intervene. And intervention in this day and age has extensive possibilities that are steadily growing each day. But limitless as these interventions are they are not always desired and that was the case for my mother.
One of the last conversations I remember having with my mother was her asking me if she was doing the right thing; she needed assurance that she wasn’t making a mistake. Many people, even some in my family, saw her refusing intervention as giving up. So they raged. They forgot the twenty-year battle she had waged with her body and soul to get her to that point. They forgot the twenty years of ten pills a day, hundreds of days spent in the ER and a lifetime of pain. She saw it as an answer to her prayers, God telling her it was time to come home now.
I looked at her and said, “What do you want to do Mama?”
“Les,” she said, “I wanna go home.”
So that was what I did. I signed a DNR, and took my mother home knowing even then I was welcoming death to follow us there. But it still took me nine months to recognize that it came and left in a flash.
When I was younger and my mom couldn’t sleep I used to read to her. I read her poems, short stories, goofy things, sad things– really anything that was available. It became our tradition for years. I would sit on the floor by her bed reading until her eyes closed and I could tell she was asleep; then read a bit longer. When she was in hospice, I remember vividly recalling one of the poems we had read, and debated the meaning of endlessly. Dylan Thomas’ “Do Not Go Gentle Into That Good Night”:
“Do not go gentle into that good night,
…Rage,
rage
against the dying of the light.”
It was like a terrible song that gets stuck in your head; the more you ignore it the stronger it becomes. For a while I raged. The part of me who only wanted her mother and cared less about the consequences of extending a painful life, raged against the dying of her mother’s light. I wanted so badly to gather the dying embers of the life I saw fading and keep them going.
I called the funeral home to pick up my mother on the night of March 22nd. Sometime after that, on a day my mind has refused to remember, we had a memorial service for her. Around that same time, my mind and soul decided to go on vacation, as one last act of defiance or defense when faced with a terrible but irrefutable truth. We’ve all seen it right? That dramatic scene in the movie where the person stands still as everyone bustles around them. It is the most vivid and accurate picture I can paint. I was still moving forward and yet stuck. I carried on surviving but not living; doing but experiencing nothing. I felt no pain, no joy, no hope but no despair. Until I was jarred awake and reminded that no one is allowed to hide from death forever. Nine months later, on my birthday no less, death made me recognize its face.
On the morning of my birthday December 12, 2014, I made the mistake of eating meat. A mistake for me because I have Eosinophilic Esophagitis; basically the foods I eat sometimes cause inflammation in my esophagus and gets lodged there. So I spent my birthday with food in my throat in the ER. This culminated in them putting me under to take it out. Unfortunately, I also didn’t react well to the anesthesia. It affected my breathing and took awhile for me to wake up. As the anesthesia wore off and I kept opening my eyes trying to wake up, and saw no one beside me– this, this is when I recognized death. But perhaps I should go back a few years…
When I was twenty years old, I had to have a tonsillectomy. It was a pretty routine tonsillectomy but in this instant as well, I reacted badly to the anesthesia and took awhile to wake up from it. As I went in and out of consciousness I remember my mother standing at the end of the bed and every time I opened my eyes she said,
“Its ok Leslie, I’m here”.
So on December 12, 2014 as I came in out of consciousness, death came into focus more and more. I kept opening my eyes hoping the scene would change but it didn’t, and couldn’t. With every raise of my eyelids, I could no longer deny death its recognition. I knew without a doubt if not for death she would have been there. If not for the absence of life, the cessation of her heart, the extinguishment of her light she would have been right beside me telling me,
“Its ok Leslie I’m here.”
She was my beacon, my light not only in waking from anesthesia but also in my everyday life. Her voice started and ended my day. It was her hugging me as if I had been away a thousand years that brought me home. Without her light mine dimmed considerably for a short while. Lying in that hospital bed I felt so keenly the lack of her light in me. So perhaps this is the basis in the art of recognizing death.
Maybe the art of recognizing death is seen in the dying of the light. Not necessarily the dying of the light in those who we lose, but the dying of their light in us. Our lives in this world are so inexplicably intertwined. We meet people and engrave ourselves in their hearts; shining our lights on theirs and receiving light from them in return. In times of struggle when our lights dim and flicker, loved ones gather around shining their lights even brighter giving us the strength to keep moving forward. They hold us up ensuring that though we may waver, our lights are never extinguished completely.
So perhaps this is why I stood still, to give my light time to be strong in the absence of hers. Her light was the basis on which I learned to build my own. That nothingness in which I dwelled for months, call it depression…absolutely, coping…maybe, reigniting the fire…definitely. Maybe I stood still to allow my light time to remember how to burn bright on its own. It should be no question then why soul mates that were married for 50 years die so close together. They have shined and nurtured each others’ lights for so long, took turns being the one shining and the one needing the light. It’s no wonder then why when one light is extinguished, the other cannot keep burning for too long on its own.
And knowing this, how much we affect the light in others and they in us; is it really so hard to understand why we
RAGE
AGAINST
THE DYING
OF THE
lights…
Patient Care CEO 1.1
Approach the care of patients as a cooperative endeavor; integrating patients’ concerns and ensuring health care needs are addressed.