I recently read the article, A View from the Edge – Creating a Culture of Caring by Dr Awdish in the New England Journal Of Medicine. It made me think back to my own personal experiences with the medical field. Experiences in which I was not the nurse dispensing care or information, but instead was the parent arriving directly to the intensive care unit at the hospital following a 14 hr flight after learning my son was involved in a motorcycle accident. Or the time when I myself was the patient after badly injuring myself in a fall and was suddenly waiting for the surgeon to arrive for surgery. And there was also the time when I was the adult child of a parent who was dying and had no clue as to what to expect or how to process it all. These experiences, I think, helped me to become a better hospice nurse. Having the perspective from the other side of the bed, so to speak, helped me to always remember the fact that although I deal with death and dying every day, for my patients and families this was was not ‘just another day’. This was not just my Tuesday 12 hour shift, this was a real family’s last 12 hours with their dad. That because I was comfortable in this medical world did not mean that my patient or family understood the why and what of what was happening. I could relate to the financial, physical and emotional strains that weighed heavily on the experiences unfolding before them.
One night around 9:30pm while I was folding laundry and my husband was doing paperwork we received a phone call telling us that our son had been in a motorcycle accident. Within less than an hour we were connected to the surgeon who hinted that my son may not ‘make it.’ “Throw some things in a suitcase, there is only one flight out today.” Fourteen hours later I was dropped off at the ICU mentally repeating, “Let me have the right words he needs to hear from me, please let me know the right words to say” as I made my way to the third floor. At this point in time I was a hospice nurse, I was familiar with hospitals, I was familiar with trauma. The nurses were aware that I was not from Hawaii and had just arrived from the airport. Although it was very late in the evening, because it was the ICU, I was allowed to see him. I sat several hours in a fold up chair at his bedside. Beyond the initial update of the situation, not one nurse came in to offer me a cup of coffee or see how I was doing. When I got up and looked for someone to ask for coffee, I was directed towards the cafeteria. It was around 2am or so at this point. Following her directions I eventually found the cafeteria down on the basement level which had a sign reading closed until 8am…Days later my son was moved out of ICU and on to a post surgical ward. Because he had a roommate I was not able to spend the night. I arrived the next morning to the charge nurse apologizing to the fact that my son’s pain pump had been allowed to run dry for over an HOUR and explaining to me why the night nurse thought telling my son ‘you’re not my only patient you know..’ was a good excuse for causing him excruciating pain that took hours to get back under control. I think it was that day that my son was moved to a private room and I was able to remain around the clock, sleeping in the recliner chair. When my husband arrived two weeks later we spooned in that one recliner chair each night. During the day we took turns who would stand and who would sit. Eventually, and very thankfully, we had to figure out the logistics of how we were to take him and his wheelchair up to the second floor of his dorm which he insisted on returning to…..It was an eye opening experience to have our world suddenly transform in an instant from tranquil to chaotic, from happy go lucky to stressed to the max. Decisions and actions were fueled by adrenaline. Suddenly we were being sucked into the medical merry go round and not being allowed to get off, even for a little break. That experience taught me a lot about what I did and did not want to take back to my hospice world. Simple things like offering, and then bringing a cup of coffee, tea or water means a lot to someone who is still numb and absorbing the situation. A smile and knowing your patient’s name when you come into the room makes you feel less a number. Just as importantly was remembering that families are an extension of your patient. They are scared, feel helpless and useless, and are still juggling to balance the other half of their lives such as children, work, finances, relationships, all complicated by the current crisis.
I have also experienced firsthand the excitement of a midnight ambulance ride, unfortunately for me it was lying on a stretcher in the back. My accident was not life threatening, but it was extremely painful. It was my first experience receiving IV morphine. When I arrived at the hospital it was soon decided that I needed an X-ray. This turned out to be the most traumatic memory of that whole experience. It was necessary to straighten my leg which I was unable to do myself. The slightest attempt to lift my leg brought forth tears and screaming I could not control, even after many doses of morphine. The X-ray tech obviously has seen this and worse every day, every shift. Her job is to straighten the leg to get the X-ray to determine the extent of damage. She was apparently immune at this point in her career to tears and screams. Luckily for me, the other tech was not, perhaps he was new, or in training, but this kind heart held my hand, explained the situation, acknowledged the procedure would hurt, and grabbed a foam pillow to minimize if at all possible what was to come. His partner just turned her back on us as he calmly and gently explained what was about to go down. I won’t say it didn’t hurt just because he did that, but it meant a lot to me as the patient to have my pain and fears be validated while being treated with kindness. A few days later I found myself upsetting the routine of my floor nurse by feeling nauseous and unable to swallow the pill she was offering. Trying to be the good patient I took the pill and accompanying water to only vomit it back up all over myself and my bed. The nurse stood there watching and said ‘ well, that was your pain pill and unless you show me that it came out I’m not giving you another one..’ Luckily I had the thought to push my call bell and as the aide came in and took a quick look at the nurse who was just standing there looking at me, he quickly donned gloves and grabbed a basin and then nicely held my hair back from my face as I continued to lose my lunch, breakfast and anything else that had been sitting in my stomach over the past week..Again, the experience taught me how to be a better nurse to my own patients. I liked the nurses that took the time to explain the how and whys, I appreciated the honesty and human connection some brought to their jobs. I appreciated a simple smile and friendly interaction. I surprised myself on how long it took for the haze of it all to subside and wondered what it was I had agreed to or thought I was understanding during that week long stay at the hospital. I also won’t forget the loneliness of hours spent while friends and family worked, the feeling of being a burden physically and financially, and humbled by the need for help from others. And the nervousness of being sent home because the bed was needed for someone ‘who really needs it.’
And finally, for me, the sting of my father’s hospice nurse saying ‘ he can hear you, you know’ after I had asked how long it would take as my dad lay unconscious and dying. Words that may have been spoken a bit too harshly to someone who had never gone through the experience before. The fact that it still bothers me this many years later is testament to the power the simple tone of those words had on me.
Reflecting back on all my experiences, I tried to hold on to what it felt like from each perspective so that I could be more aware of my own words and actions, so that I was open to the patient who needed to talk and unload, wasn’t offended by the family member who was distrustful of the medical environment, and simply more in tune to the whole situation not just my small part. Hopefully what I learned helped me be part of making scary and painful times into a less angry memories.