"Home" Alone.

Abstract

"Home" Alone Andrea Hope Rubin and Monica L. Gerrek This narrative is a collaboration between Andrea Rubin, burn survivor, and Monica Gerrek, burn unit ethicist. Monica begins by describing Andrea's injuries and hospitalization. Monica On October 11, 2014, Andrea Hope Rubin was in a freak car accident. Though she was rescued from the burning car, she suffered a 58% total body surface area burn with third degree burns to her chest, arms, back, legs, head, and face. Andrea was left without a nose or ears, barely any lips or eyelids, and she lost partial vision in her right eye. She also suffered fourth degree burns on her lower right arm, which was quickly amputated just below the elbow. Andrea's scalp was so badly burned that her hair will never grow back and, to this day, she continues to seek treatment for the wounds on her head. Andrea spent approximately 12 weeks in the burn intensive care unit. She was intubated and sedated for about half of that time. After being discharged from the burn unit, she spent roughly eight weeks in a rehabilitation unit, which was located in the hospital. Because of this set up, Andrea was easily able to receive continuing treatment from the burn team and other providers. During this time, she was told repeatedly that she would be going to acute rehab for eight weeks upon discharge. Though Andrea was not looking forward to this, she was committed to ensuring the best possible recovery for herself and doing the necessary work to achieve independence. Needless to say, Andrea was elated when she was told she was too advanced with respect to occupational therapy to go to acute rehab and would be going home instead. No one had expected Andrea to recover so quickly. She had received a lot of praise during her time in inpatient rehab because of her diligence and dedication to regaining her physical abilities. Andrea knew she had worked hard and was proud of herself for being an overachiever. After hearing the news, Andrea quickly started making phone calls to family and friends to share her excitement with them. Her elation over her new discharge plans quickly turned to tremendous fear, however, when her family and friends panicked at the news. Andrea Everyone who asked about my going home asked about "acute care." I had to convince them that I was going home home, and I couldn't believe no one was happy that I was coming home five months after my accident. I was just so happy to go home that I figured surely insurance or someone will care for me. I didn't think beyond it. I was just so excited to get out of the institutionalized environment. Then I saw everyone around me panic and they started [End Page 210] talking about putting me in a nursing home and I didn't know who was going to pay for that. I got frightened. Monica Conversations with family and friends made Andrea realize that she couldn't actually take care of herself. She could barely feed herself or brush her teeth, let alone cook, shower, dress, or drive herself to the numerous doctors' appointments she would have upon discharge. When Andrea expressed her concerns to her providers and asked them to reconsider, they told her that it wasn't up to them—that according to her insurance company she was not eligible for acute rehab given she had met the standards for discharge to home. Andrea was incredulous. She couldn't believe anyone expected her to go home and manage activities of daily living or instrumental activities of daily living on her own. Andrea There was nothing that bridged the gap for care—from hospital to home. My family was so freaked out. What are we going to do with her? Who's going to do what and where and when and how? My family was so stressed out . . . I need rides, I need to get places, there was constant care. The exit strategy was non-existent. Monica In addition, Andrea didn't have a home to go home to. Prior to the accident, she had been living with a...