I used to think of legacy in terms of things - memoir, photos, recipe book, quilt, jewelry.
Perhaps it is because many of the patients I see are those who are at a time of self reflection, whose lives are dramatically changed because of a serious diagnosis, a critical illness, or the dying process itself. I episodically experience an onslaught of need to create a legacy project, to feel that I am leaving a piece of myself in this world and that I matter. I am writing a book based on my work as a palliative care physician - and even started this blog! - in part to leave behind a concrete representation of what is so important to me.
One day, the word "legacy" took on a different meaning for me.
A former social worker colleague who sees palliative care patients in an academic hospital said something that made me revisit one of my most haunting patient interactions. "Sometimes people expect us to create a legacy project with a 45 year old father and wrap up his life with a pretty bow. That's not a reasonable expectation! Many times a patient, especially a young patient, isn't ready. They are not in the frame of mind where they want to think or talk about leaving their family and this world. Some don't want to spend their already limited energy on a legacy project. We remind them whether or not they create something tangible, that they have already created a legacy. Their legacy is how their words, actions, attitudes, and perspectives have changed, and are still changing, the lives of other people."
Intentionally or not, we are already creating and leaving behind our legacy.
I did not really see the value of palliative care, the specialty I practice currently and the profession that I now consider a part of my identity and my way of contributing to society, until I took care of several memorable patients very early in my career as a hospitalist (a hospitalist is an internal medicine physician who takes care of patients admitted into the hospital before turning care over to the primary care physician after patients are discharged from the hospital).
Changing details to protect patient privacy, I would like to tell you about a woman who unintentionally profoundly affected me a little over a decade ago. I remember vividly the slender 55 year old Black housekeeper who was resuscitated by her daughter, visiting home between college and graduate school. "I had to do CPR on my mom. I was so scared."
Ms. P had gone into cardiac arrest (that is, her heart had stopped pumping; read Post 5: CPR on TV versus CPR in Real Life - Three Ways They Differ) due to severe electrolyte abnormalities. The electrolyte abnormalities themselves were due to a breast cancer recurrence that no one had known about until that hospitalization. Ms. P learned that her breast cancer had returned and spread after she regained alertness in the intensive care unit (ICU).
The ICU physicians transferred Ms. P to the general medicine floor with the words "She is refusing lab draws. She is refusing our help. She needs to go home with hospice."
My communication with Ms. P began with earnest pleas for her to allow lab draws so we could monitor the electrolytes in her blood. After all, her heart had stopped due to severely abnormal electrolyte levels! This angry woman would stare out the window, unwilling to give voice to the reasoning behind her refusals.
After two days of bargaining attempts, I sat down at her bedside and for the first time in my young professional life, paused. I paused not because of a wise decision on my part but rather due to a profound feeling of helplessness with my inability to reach this woman with her stony silence.
I sat there wordlessly for so long that she opened her mouth.
"I did everything I was asked to do. I prayed to God. I got the surgery. I did the chemotherapy. I suffered through the nausea and fatigue and kept going. Even when I was done with treatments, I kept all my appointments. Every visit I asked my cancer doctor if we should check for cancer coming back, and every visit she said we didn't need to at that time. I trusted her. I did what I was supposed to do. And now some random doctor says the cancer is back, it's spread, and that I should get my affairs in order!"
I wish I could say that I was able to recognize this opening for the gift that it was and start a conversation with this single mother of three children, ranging from high school to college aged.
Instead, I brought the conversation back to our need to check her electrolyte levels to determine if she were stable for discharge home, and Ms. P retreated back into herself.
I did not know how to acknowledge the profound sense of betrayal, anger, confusion, and sadness I felt on her behalf. I felt myself empathizing with and feeling her emotions. I did not know if I was allowed to empathize so strongly. Was this a violation of professionalism?
Ms. P was eventually discharged home with hospice support, casting fierce looks of accusation to anyone who made eye contact with her as she was wheeled outside her hospital room.
I understand now her looks of accusation. She had trusted in the healthcare system to give her the best care possible. She had felt betrayed and abandoned when she was surrounded by so many healthcare providers who did not know how to listen to her.
I had briefly met Ms. P for three days near the end of her life. I think of her, and I am driven to not squander another opening to truly listen. This is Ms. P's unintentional legacy.
Over the next decade, I transitioned from working as a hospitalist to working as a palliative care physician (Read Post 1: What Exactly Does a Palliative Care Specialist Do?). I learned how life altering even a single conversation can be, both for patients and for family.
Legacy items that loved ones can read, see, hear, smell, touch, or taste may bring comfort to loved ones for years (Read Post 12: Legacy Work and the Five Senses). Know that even if you are never able to create such a tangible item - whether it be due to lack of time, strength, energy, interest, or mental readiness - that you are still leaving a legacy with your interactions with the world.