Abstract
A
The first day I made my initial home visit with Paul, the chaplain. His mood radiated positivity and assurance in a way that seemed to make everyone around him light up with a smile, myself included, despite my increasing dread. He approached death with ease, and I watched in awe as he knowingly morphed himself into a pillar of support to fit the individual needs of those around him. As we approached the first house he confidently walked to the door and knocked, as I stood in a semi-stiff state of nerves almost attempting to hide behind him. We were visiting an 84-year-old female, Mrs. K, who had end-stage COPD and cardiovascular disease. Her husband came to the door and, to my shock, greeted us with a smile and led us into the living room. I wondered how he could be so at peace when his wife lay there dying? In the living room our patient was nestled in a cozy bed enjoying a warm fire. Despite not being able to walk, she had access to everything she needed and appeared comfortable and content. For a moment I forgot she was dying.
I sat down next to Mrs. K and asked how her day was going. She coughed up a laugh and stated, “Entertaining.” Perplexed by this response, I dug deeper. She told me she was facing one of the biggest challenges of her life. Being a medical student, I wrongly assumed she was referring to her state of health. Yet she was quick to continue, stating “I'm attempting to teach my husband to bake my cornbread, his favorite treat, so he can enjoy it after I'm gone.” Her eyes were bright with amusement, and despite having to take many pauses to catch her breath as she spoke, her voice held a friendly, teasing tone. She lifted a thin arm to point towards a crumbled mess of cornbread that sat on the coffee table. She shook her head with a smile. “See what I have to work with?” she mused. Meanwhile, her husband joined in and added, “You should have seen the first attempt if you think this is bad!” I was stunned. Where was the suffering patient I had envisioned? Where was the grief-stricken family I was so afraid of disturbing? Instead, I found myself in a cozy home comfortably chit-chatting with Mrs. K as Paul went over more practical details with the husband. We wrapped up our visit with a hug, and Paul made a point to let the family know he was always available.
In the car I had time to reflect, as the next home was a good 20 miles away. I realized the knots had disappeared from my stomach, and I even felt relaxed. I had not walked into a house focused on death and suffering, but rather a home filled with love. Her state of ill health was not being ignored but rather addressed in such a matter-of-fact way that it was easier to view Mrs. K as a person instead of focusing on her illness and suffering. Only then did it occur to me that in the hospital I had never ended a patient encounter with a hug as I did with Mrs. K. Or that I rarely knew how my hospitalized patients lived, much less what a normal day would consist of for them outside the confines of the hospital. In the hospital it seemed acceptable to focus on the disease, the medications, and the symptoms, but I had failed to truly grasp the sense of the person. Now in my first home visit I had met the person, and only focused on her health as a component of a more complete picture.
Over the following two weeks I witnessed wide variations from the experience of my first visit. I have come to realize the weight of the burden placed on many caregivers and how grateful they were when I inquired about how they were coping. I met a few patients who were in pain, and others who were angry and not ready to accept their illness. I learned that even though I could not cure them, I could work with the nurses to ease their pain and anxiety with a carefully chosen mix of medication and kindness.
I learned what the “death rattle” sounded like, and even then there was more that could be done. I learned how important it was to reassure the caregiver about how great a job they were doing in times so close to death. I went to funerals of people I had only met once, and was surprised to have family members approach me and thank me for my mere presence. I learned that I did have something to offer, although often not something I had learned in the past two years of book studying. I learned that healing and patient care extended beyond providing the correct diagnosis and treatment. It also included empowering caregivers to meet the needs of their loved ones, and easing anxiety and anger by simply listening and being present.
As the clerkship came to a close I realized I still could not imagine what it was like to be in my final months of life. Thoughts of my own death were still too unsettling for me to fully embrace. However, I am starting to accept the notion that death does not have to be terrible as I once thought. Every person I met had their own unique approach to accepting mortality. I learned that despite my inability to fully comprehend the notion of dying, I will always have something to offer, whether it is medicine or simply being present. I also realized that to me, hospice was no longer equivalent to death. Instead, hospice is a forming of partnerships with patients as well as their loved ones to work towards comfort, acceptance, and peace in the face of end-of-life challenges. As I continue on my journey to becoming a physician, I hope that I will remember this experience, and realize that referring a patient to hospice is not admitting defeat, but is a means to allow other therapeutic options to come into play. I also hope that I will always remember the significance of a hug, and the important role that even cornbread can play in helping one to find peace in a more comfortable and dignified death.