“Why Us?” — Reflections on Grief and Loss

“Why Us?” — Reflections on Grief and Loss

Inas Abuali, MD, FACP

@inas_md
Jul 27, 2020

I am writing this on July 17, 2020. As I drive to work with a mental checklist of patients I need to see, consultants to contact, and documentation to complete, I take a few deep breaths before I step out of my car to steady myself, because today is also 10 years since I lost my mom.

My mom was always an early riser. Every morning at 5 AM, you could smell the fresh pot of coffee she brewed as she prepared for her long workday. At 55, she had an energy that I could not muster in my 20s, and her long shifts as an OBGYN seemed to simply energize her more. We often shared a cup of coffee before I too headed to work as a medical intern. One of those mornings, she casually told me that she had felt a lump in her breast “a few months ago” but had been “too busy” to see a doctor about it. I immediately said, “Your mammogram last year was just fine. You have had fibroadenomas before; it’s probably nothing.” Thus was my unshakable belief in my early 20s that of course everything was fine.

Things were not fine. Upon further workup, my mom was found to have triple-negative breast cancer that had metastasized to her bones. Despite experiencing an early response to chemotherapy that her oncologist said was promising, she died after a few brief months from complications related to acute liver failure. Her doctors could not give us an answer to why her liver failed. I did not get a chance to say goodbye. I did not get a chance to say what I needed to say because I thought we had more time.

During the whirlwind of navigating a new life impacted by a cancer diagnosis, I asked my mom, “Why us?” as I struggled to make sense of the unfairness of it all. My mother was a woman of deep faith. Her response was simple and graceful: “Bad things just happen. But perhaps someday you will help others going through what we have gone through and that’s how something good will come out of this.”

So here I am, 10 years later, reflecting on who I am today and what I have learned from the loss and grief that propelled me to relocate across the globe and dedicate my career to serving patients with cancer.  

A cancer diagnosis is just as devastating to the patient’s loved ones.
I remember my own sense of impending doom and panic during my mom’s oncology appointments. I wish someone had acknowledged those emotions. Because of that, I take the time to know my patients’ families. I encourage them to seek counselling and ensure that they are provided with appropriate resources to navigate the often catastrophic mental health and financial ramifications of being a caregiver to a loved one with cancer.

One size doesn’t fit all in the complex care of a patient with cancer.
My mom was fiercely independent and deeply passionate about patient care and advocacy. She believed that a day not spent in the service of others is a day wasted. She wore many hats, from volunteer work in the community to leadership positions in her institution, and she devoted endless hours in clinic to her patients. It was important for her to continue with her work for as long as she could. She needed an individualized chemotherapy plan that fit into that schedule. Because of this, I spend as much time as I can exploring my patients’ goals and values. I support and honor their wishes regarding the importance of quality versus quantity of life and their need to have a degree of control over a life impacted by illness.

Fear and denial are very real emotions that will cause patients to present in later stages.
My mother was a physician who knew the red flags for a malignant mass. However, she was also someone who had recently watched her best friend struggle with breast cancer and was too scared to undergo further workup when she initially felt a lump. While she had an aggressive, rapidly progressing cancer subtype, I have constantly wished that she sought medical help earlier while this was a still-curable malignancy. Because of this, I understand the fear that drives some patients to put off workup and treatment. I make every effort to address and support the underlying emotion of behaviors that may seem irrational from a detached clinical perspective, without judgment or blame.  

It is a privilege to be part of this field in this era of rapid therapy advances.
Every time I see a patient with breast cancer, I am reminded that I can offer them treatment options that did not exist for my mother. If their cancer progresses and we move to subsequent lines of therapy, I hope for newer therapies that can further improve their quality of life and prolong survival. This motivates me to seek available clinical trials for my patients and to personally contribute to research that can advance our field forward.

The global and national socioeconomic disparity in oncology care is astounding and we all have a responsibility to actively bridge this gap.
In Egypt, my native country, there is a significant lack of access to clinical trials and new therapies. My family was privileged in being able to afford health care others cannot afford, and we were able to navigate a complex health care system by virtue of being part of it. Health disparities and health equity are critical issues around the world, including the United States, where I currently practice. This prompts me to actively pursue available resources for my patients and to investigate institutional and national barriers to equity in oncologic care.

Your patients and their families will remember how you made them feel.
 I remember my mom’s oncologist as always rushed, barely making eye contact, barely asking, “How are you doing?” My mom, who was a gentle soul with impeccable bedside manners, always felt like “another chart” rather than a person. I also distinctly remember the ICU physician who was kind and gentle as she explained my mom’s clinical condition in layman’s terms to my siblings who are not in the medical field. This is a daily reminder for me to pause, reflect, use silence as needed, and actively listen to my patients and their loved ones despite the rushed and hectic nature of our job. Our inclination as physicians is to want to save lives and often we view death as a failure. I have come to accept that sometimes the best thing I can do is to offer a hand to hold, a listening ear, and ensure that there is a focus on dignity and comfort at the end of life.

Ten years later, I do not have an answer for “why us?” I will always think of my life as divided into who I was before and after this profound loss. I grieve today and every day. But I find meaning and healing in a life dedicated to the service of others who are going through what my family went through.

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