My mother died in her bed at age 90.8 in my home on August 13, 2008. Mom was full of pithy phrases, like the one that titles this piece, up until she slipped away that day after six weeks in hospice care. I crept into her room one early morning to see if she was awake. I came up close to her face as I couldn’t tell from a distance if she was still breathing. She abruptly opened her eyes and proclaimed, “I’m still here!” Joking, even unto death.
I cared for Mom during the last four years of her life and had the great fortune to listen and learn from her perspectives on living, aging, and dying in the Western world. Much of what I have come to write and speak about, I realize in retrospect, is anchored in the remarkable life of this Black woman born on a Louisiana plantation in 1917. Her life as a schoolteacher, mother, community leader and “race woman” embodied the practices of cultural humility described in the 1998 article I wrote with my colleague, Dr. Jann Murray Garcia.
Jann and I wrote the article in recognition of what we learned from community members we worked with from 1992–97. We see the cultural humility principles as guidance for practitioners in many fields who are struggling to understand what it will take to bring equitable engagement with the complex identities of people who arrive for services.
Cultural Humility Principles:
It's 2022 and I am now close to age 72, wrinkled, with a full head of curly white hair. Young people routinely interact with me as an elder, with the combinations of reverence, deference and loud voices as if my hearing has failed. It has not … yet. Still, they let me know that among my many identities, I am now part of the Tribe of Elders. Old people.
It takes courage to get old. In 2016 I was diagnosed with multiple myeloma, a blood cancer, and over the next several years, received chemotherapy and a stem cell transplant, which have placed me in remission. Death held my hand and walked with me during those years. Only over the past two years has the burden of wondering if I would make it from day-to-day changed into a perspective that helps me see the arrival of each day as a divine gift. Each moment, a divine moment.
More than presentations, trainings, coaching, formal teaching and conversations with people around the world about cultural humility, being a patient in the mysterious world of medicine taught me how cultural humility has the potential to transform the lives of people, who are, like me, “older.”
‘My doctor routinely invited me into the decision-making process.’
My oncologist is a young Black man who chose to specialize in the science and clinical treatment of people with multiple myeloma. At my first visit, I sat on the examining table waiting nervously for his arrival. He entered with a comfortable smile, reached out his hand and said, “Hello Dr. Tervalon, so good to meet you.” I immediately responded, “You don’t have to call me ‘Dr. Tervalon,’ Melanie is fine.”
He moved to the computer stand, took a seat, turned toward me, and said, “Yes, I do. I know who you are.” I instantly wept.
My doctor sat quietly and waited for me to be present with him. He then started the process of entering a relationship of meaning with me: He asked about my day thus far, my family, my feeling about the diagnosis. He mentioned that he had spent the evening before reviewing my chart—my medical history, labs and other pertinent information.
I credit this young man with saving my life. And for being an example embodying the principles of cultural humility. I endured several course corrections during the treatment of my disease. My doctor routinely invited me into the decision-making process in each instance, both out of respect for me as a physician, and out of respect for me as a patient. That these decisions were about my body and my life, drove the content of his conversations with me.
I was the expert on my life while he was the expert in the field. Whether I would continue to live, however, required a mutually beneficial partnership that fully considered the necessary scientific and emotional choices involved in each step of my therapy.
Here are the personal lessons about cultural humility that came through for me from this experience over the past seven years:
- It makes a difference who is caring for you when you are a patient—young or old. My doctor “saw me.” He respected me and brought both science and humanity into the room with him. Ah, yes, he was a Black man who understood the day-to-day presence of racism, and sexism, in my life as a Black woman physician. As an elder, find a practitioner who can see you with your multiple and complex identities, respect you, and honor your experiences in the world.
- Speak up for yourself. You are the expert on your life and the accumulated wisdom that is part of your body, mind and spirit during these twilight years. Guide those caring for you to understand that this is the one good life you must protect and honor, and you expect that they, too, will protect and honor your life. And take along a trusted friend to each appointment, who can take notes, step back, ask more questions, and advocate for you when you can’t find your voice, for whatever reason, in the moment of the visit.
‘I took it upon myself to “complain” to the administration that the policy was barbaric, and to get it changed.’
- Strive for partnership in decision-making at each step. These decisions can be life and death, and thus can’t be rushed, or taken lightly. Doctors are often multitasking in their brains, even in the presence of the patient. Slow the process down to your required speed. Waiting when the weight is heavy may be the wise choice before responding. Invite your practitioner to understand that processing might involve more than their usual pace of practice, because at this age, there are more physical and emotional variables to consider.
- Engage the institution directly in dialogue when there are practices that are racist, sexist, ageist or differential along the broad spectrum of “isms.” Change happens when we identify and speak plainly with others about what is inequitable in our care as demonstrated in tone of voice, choice of treatment, referrals, or lack thereof, to financial resources. During my diagnostic evaluation, I was subjected to several bone marrow biopsies. The first two were performed without anesthesia. Extremely painful! Each time I was told by two different male physicians, neither of whom had experienced the procedure on their own bodies, that “most people don’t complain.” I could feel the inference that I was simply a weak old woman. I took it upon myself to “complain” to the administration that the policy was barbaric, and to get it changed. My third bone marrow biopsy occurred with anesthesia. Expensive for the institution, but right for me, the old, Black, female patient.
My sense is that we elders are immersed in a particular set of social and cultural constructs that make assumptions about our being—biological age, gender, race, physical ability—with a quick glance at our faces and our bodies. These wrinkled bodies have served society, the communities we love, our families, and ourselves, fully and well. These aging bodies house great amounts of practical knowledge about living decade after decade in this society that is still stretching to actualize equitable treatment and care for each member.
Practitioners would do well to consider the principles of cultural humility when we elders, who have nurtured and raised you, arrive for care. Remember to treat us as the treasures we are.
Melanie Tervalon, MD, MPH, is a pediatrician by training. Her seminal article on cultural humility, co-authored by Jann Murray Garcia and published in the Journal for the Poor and Underserved, together with her hands-on leadership with public, private and nonprofit organizations has helped to change the way professionals, service providers, institutions—and entire fields—approach their work in the community and within institutions and organizations. In her current role as an independent consultant, Dr. Tervalon tailors services and products anchored in the principles and practice of cultural humility for clients in the public and private sector, spanning the disciplines of healthcare delivery, public health, education, public service and advocacy.