by Theresa Spranger, Bioethics Program Alumna (MSBioethics 2012)
Earlier this week my dad had surgery. He has Amyotrophic Lateral Sclerosis (ALS, also known as Lou Gehrig’s disease) and has recently been experiencing pulmonary issues from a weakening of his diaphragm. The surgery was for the placement of a diaphragmatic pacer. Basically, he has wires running through his diaphragm muscle, and they gather into a plug on the outside of his abdomen. He can exercise the diaphragm by connecting to a wall outlet. The electricity allows the pace maker to move his muscle up and down.
He is one of about 500 people who have had this new surgery. It was originally developed for patients with spinal cord injuries, but it has been approved by the US Food and Drug Administration (FDA) for humanitarian use in ALS patients. The pace maker has been seen to slow the deterioration of the diaphragm muscle in ALS. It helps some patients stave off the dreaded ventilator and is assumed to help lengthen the life and enhance the quality of life for the patient.
Being a patient’s family member at a hospital is a change for me and I am always watching closely to be an advocate for my loved one or to pick up tips if I am impressed with how the workers handle situations. My observations on these days often end up in my posts. I believe patient advocacy and interacting well with patients is a vital, but often lost art in medicine. See my post “Otherwise Alone” for the tale of my aunt and her hospital admission after several mini-strokes.
That post was one of disappointment in the hospital staff; this one however is going to be far more uplifting. I saw some truly wonderful things at Henry Ford Hospital in Detroit and believe praise should be given generously and that other medical professionals (myself included) can learn from members of their team.
Dad was the first surgery of the day and taken in right on time. Some of the staff were kind enough to overlook the extra two family members huddled around Dad’s bed in pre-op, that is until his nurse came and cut the party in half. She didn’t make a great first impression. (lesson: watch the tone, when talking to patients, even when…no…especially when enforcing the rules) However, she later proved herself to be incredibly kind and thoughtful. As they wheeled Dad away, Mom and I (the only family left in pre-op) were rather emotional watching him go. It’s been a long and painful journey on this ALS road and the surgery was another scary step into the unknown. The nurse was so kind; she put her arm around Mom and assured her that Dad had one of the best surgeons in the hospital and he would take very good care of her husband. The nurse was calm and patient, she was truly empathetic and nurturing; in total, she was a credit to her profession.
The surgeon had given us a timeline and appeared to speak with us right on schedule. The surgery had gone perfectly; Dad was breathing on his own and should be awake and able to have visitors within an hour. The surgeon answered all of our questions and in no way gave the impression that he had anywhere else to be, though I know from experience that he probably had several things on his list that day. He took time to talk to us about the new device, how we would be trained, and validated our desire to have more than one family member at the training.
Though this surgery can be outpatient, Dad’s surgeon likes to watch his ALS patients overnight to make sure they are not having complications. Dad was admitted quickly to his private room. Mom had told the staff earlier that she intended to stay with Dad overnight and that we had his motorized wheelchair with us. So, when he was admitted he was given one of the biggest rooms on the floor, complete with a couch and extra pillows and blankets.
Dad’s nurse and nursing assistant continued the great care. His nurse told him about a project she had done in school regarding ALS patients and that she had specifically requested to have him as a patient. She specifically requested the complicated, wheelchair bound, ALS patient? Outstanding…I certainly haven’t seen that before. The last time Dad was admitted to a hospital they didn’t know what to do with him and kept trying to ignore that fact that he had ALS…um…it doesn’t work that way guys…it would be cool if it did, but it definitely doesn’t. What a refreshing change to have a nurse who truly wanted to care for him, in spite of the complications ALS brings to a hospital stay.
The nursing assistant was another home run, she was Mom’s favorite member of the team: cheerful, hardworking, and helpful. She never made a sour face when asked to do something, she was eager to help, and willing to allow Mom to help her with some of the tasks. This was fantastic, Mom takes care of Dad every day and allowing her to help made Dad more comfortable and allowed Mom to pick up some tips on “how the professionals do it.”
At the end of surgery day, the surgical resident came in during his rounds. Mom and Dad had seen him about 12 hours before and commented on his long day. He cheerfully said it was normal and he would probably be on his way home in a half hour or so. He did not give off any of the rushed, overworked resident vibe I so often see. In spite of his long day, the fact that he was on call, and would have an even longer day tomorrow he sat and chatted with Dad for almost 15 minutes. He talked about the surgery, how dad was feeling, and reassured him that the shortness of breath he was experiencing was expected and would resolve. He treated Dad like a friend and chatted with him about why he chose to be a surgeon, he answered all of Dad’s questions about residency and the path to becoming a doctor like it was the first time he had heard them, and then told us about his future plans for his career. My dad is a social butterfly and can make friends anywhere, with anyone, but it isn’t often you find a physician who will take the time for a conversation like that at the end of a long workday.
Overall, I was extremely impressed with the care and attention given my Dad at Henry Ford this week. Mom spoke with one of the nurses about the care and how much we had all appreciated their kindness and compassion. The nurse told her that at Henry Ford they were trained to treat each patient like they were your only patient and give every interaction your full attention. What a wonderful way to train your employees! In my opinion it is working well and other hospitals would do well to adopt this policy.
There is no deep bioethical analysis in this post, but I think it is important and can be inspiring to look at the successes in patient care. Henry Ford cares for the whole patient as an individual, emotionally as well as physically. This is a monumental task and they made it look effortless. Imagine if every hospital experience were like this one…
[This blog entry was originally posted in a slightly edited form on Ms. Spranger’s blog on May 25, 2013. Its contents are solely the responsibility of the author alone and do not represent the views of the Bioethics Program or Union Graduate College.]