As I lay on the table staring up at the ceiling tiles and waited for my biopsy to begin, I suddenly became keenly aware of the fact that I was now entering a very strange place. I was now a patient. I could no longer offer hope and comfort. Instead, I was hanging on every word spoken, seeking the meaning behind the eyes of every person who spoke with me about my disease, and realizing that my life would forever be different. I had worn many labels in the past: daughter, wife, mother, student, teacher, nurse, and nurse practitioner. My new horrifying, frightening, and disconcerting role as patient began to engulf me.
Fear and frustration
Instead of being the provider who controlled information and shared it with the patient, I was no longer allowed to have full access to my personal medical records. Before surgery, the records clerk on the phone informed me that I could not retrieve them through the medical records system because that would be a breach of HIPAA (Health Insurance Portability and Accountability Act) rules. I was told I would have to come in person to request the records and provide a reason why I needed the information. “Why I needed the information?” I thought. I needed that information to stay sane, to stay in control, to stay alive.
I began to evaluate every interaction with my providers and gauge whether I should tell them about my professional background, for fear they might treat me differently or compromise my care. I had never felt this level of fear and trepidation about anything in my life, and nothing I had been through before really prepared me for it. I was used to being in charge and setting the pace for my relationships. I took on new challenges with abandon. Direct and straightforward, that was me—before cancer crept into my world. But now, just now, who was I, what was I becoming, and how would I cope?
A painful beginning
I remember the young resident who performed the biopsy, flanked by his supervising physician and a seasoned nurse colleague. I remember feeling he was young, but he needed to learn, and after all, I was a good “first attempt” at learning to do a fine needle aspiration. I mean really, I was in relatively good health, no real risk factors, no hypertension, no diabetes, no renal disease or liver disease, no cardiac disease. I was a picture of health…so why was I here again staring at those ceiling tiles?
As the young resident performed the procedure, he made an error leading to a hematoma that began to occlude my airway. The nurse and his supervising physician intervened and instructed him through applying pressure and using a different approach how to “correct” the situation. I must admit, during this process of scans, rescans, blood tests, and biopsies I had never really considered this disease a worthy opponent. But at that moment, lying on that table, unable to take a full breath or find comfort, I truly realized for the first time that being a patient is not so easy and defeating cancer not so assured.
Walking down the hallway with my husband after my biopsy, I completely broke down, sobbing almost uncontrollably. I had not experienced that level of collapse since the sudden loss of my mother one year earlier. My husband was jarred to say the least. This person clinging to him and unable to speak looked nothing like the woman he married over 25 years earlier. When someone in your life changes so rapidly, it changes everything. Relationships readjust, expectations change, and perceptions of health and wellness change. Suddenly when people ask, “how are you,” they mean, “are you dying yet, or are you in pain, or how long do you have to live?” They look at you as if you are broken, fragile, helpless. They stop telling you things that are upsetting, they whisper more and argue less.
What patients need
As providers, we think we know what it means to be a patient and we try very hard to empathize. We relieve pain, give medications, hold hands, offer comfort, and provide information and advice. But what is it that patients want from us, what do they need from us, and how do we give that to them? That sentence, what do they want from us, hits home to me because I am both one of us and one of them. I now have to identify as both patient and provider. During the day I may see colleagues in the cafeteria who know me as a patient. Before cancer, I would simply say hello or talk to them about their day. Now there is an expectation of boundary, space, and distance. There is a sense of not becoming too familiar. I respect that space for them, my providers, my surgeons, my nurses, my radiation oncologists, but I never feel comfortable in it. When they look at me, do they see a weak, vulnerable “40+ yo WF”, or do they see me? That is my most pressing question and one that is only infrequently answered.
I remember being a nurse on the oncology unit and caring for patients in various stages of treatment and disease. I remember that the first patient I ever cared for who passed away had succumbed to cancer. I remember all those years ago, how devastating his loss was to me, and I was “just” his nurse. I realize now how important I was to him, to his family. I realize now that all of those interactions with all of those patients before and after him have had import. I hope that I have treated them the way I now understand I would want to be treated. I hope I allowed them to be their truest self, to grieve, to be angry, to be happy, to laugh, and most importantly to not feel broken or fragile or damaged all the time. I hope that I was able to get to know them, not just as patients, but as human beings.
After my time on the oncology unit I became a hospice nurse. As I drove from house to house and family to family, I was keenly aware of the need to be present with that family and with that patient. I remember feeling that these patients and families were so brave to reach the point in their treatment that they knew the outcome, but continued to love each other, care for each other, and be there for each other. I noticed that most of these families initially spoke softly, stood silent vigil, and tried not to upset or worry the patient. Slowly, as the patient remained home and they had the support team of nurses, social workers, chaplains, and volunteers, the interactions became more real and less polite. There was more time living life in an honest place with true feelings expressed including anger, happiness, laughter, with celebrations of birthdays and holidays. It’s not that they forgot that they or their loved one was dying, but rather that they chose to not allow it to steal their living. I was reminded of them, all of them, as I recovered from my surgeries, went through my treatments and continue down this path I prefer not to travel. I am reminded that our job as providers is to allow our patients to be whomever they choose to be. Our job is to give them information, give them professional competent care, and give them the dignity of their personhood.
Karen S. Moore is an assistant professor and coordinator of the adult-gero nurse practitioner program at Saint Louis University in St. Louis, Missouri.
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