Hospice care is something I experienced first hand prior to this year. In 2007, as my mother was in her final weeks battling stomach cancer, we moved her from our home to a hospice care facility. Although I was only twelve, I remember this move as the time I finally realized that her death was inevitable. When my mother was first diagnosed with stage IV stomach cancer, my family had told me that it was a disease she would beat. Remaining hopeful, I never imagined that this time would come where I would have to accept that she would pass. Moving my mother to hospice care provided her the care, comfort, and attention she needed in her final week of life. I remember my father, sister and I making the quiet 45-minute drive to her hospice facility, each of us at a different state in accepting the fate of her disease. I remember noticing the caring support staff, patient nurses and comfortable facilities. Hospice care provided a safe space for our family to spend our final days with my mother. Taking on the commitment of this year-long pre-med hospice volunteer program, I hoped to become the one providing that supportive care that my family benefited from.
In reading the interview with Dr. Lucy Kalanithi, her words about her role as a lasting representative and speaker for her husband, Dr. Paul Kalanithi, resonated with me. She said, “It’s not a decision about what you as a family member want. It’s what they would say if they could sit up and speak.” In the process of dying, there are often limitations in communication near the end of a life. From my initial visit with my first patient, he was limited with regard to his vision and memory. I was faced with the challenge of explaining my role as a volunteer to speak and be present with him. At first reserved, he assumed that I was only visiting to try to get money out of him. My first visit ended with him saying, “Okay I think it is time for you to leave now. Tell your people that I will not give any money.” I remember leaving that first meeting discouraged. Could this hospice program that I expected to learn so much from really be this? How could I breakdown the barrier to help this man become comfortable with my presence?
It was through my subsequent third and fourth visits, that my patient began to trust me. Although his communication skills were clearly declining, through his non-verbal emotions I noticed his serenity in my presence.
Communication is a fundamental aspect to medicine. Physicians must be able to recognize and understand their patient’s feelings, even if their patients cannot express them. In hospice care, often there is a fear to communicate. Through patient dialogue, effective questions, and taking note of non-verbal body language, we can ease the process of death.
Over these past nine months, the difficult interactions with both of my patients has forced me to understand the role of supportive care. Often times as challenging and uncomfortable as silence may be, we must realize it is important. To create an environment where the patient feels peace in passing, we must help them uncover their fears holding them back. Finding closure in life is not an easy process. As Dr. Lucy Kalanithi said so eloquently, “Death is not a medical event, but we still treat it like one.” As future physicians, we must remember to find a balance in our care for the individual and the disease.