Patient's With Special Needs

A Special Kind of Patient

Part of my work with The PULSE of NY Patient Safety Advisory Council is working with specific groups and teaching them about patient safety and learning from them, what it is about the care they receive which makes them feel unsafe or, incapable of getting safe, quality care.

One of the groups I have been working closely with is people with disabilities. People who have various disabilities are an extremely unique patient. They can’t possibly be treated the same as all patients. They are often in need of additional and very specific care. Most importantly they need to be treated, as all patients with dignity and respect.

 A patient who I recently visited in the hospital could not move her legs and had very limited use of her arms. She couldn’t turn her head and was very large, making it difficult to move her. Her mind is sharp and has a quick sense of humor but when the medical staff sees her, they want to assure her that they know what to do for her. There is no way anyone “knows” how to handle someone with disabilities unless they ask them. Some people have no feeling in their lower extremities, some do.

 When trying to move her, staff pulled on her leg that has very limited movement and pulled her tendon, leaving her in terrible pain causing an additional day in the hospital while getting x-rays.

 Another patient I have been seeing had surgery and is unable to move her legs and most of her upper body. Most patients are encouraged to get out of bed immediately following surgery. In many cases these patients can’t. They need the support of staff to help move them and it is critical that they are moved constantly. Disabled patients have special needs for their toileting and movement. They may take extra time but it can be time well spent if they ask the patient, “How can I help you”.

 While at the hospital, I saw how hospital staff left for the patient in the next bed, also disabled, her breakfast tray on a table out of reach. Her son came and found she had not eaten since she arrived the day before.

 This patient I was visiting asked me to move her leg for her. Something as simple as getting comfortable in bed is impossible when you can’t move. I helped shift her leg and watched her grimace. Fearful that I was hurting her she assured me it was ok and encouraged me to continue. She was grateful for my help. It lasted less than one minute. That afternoon she told me a nurse’s aide came in and when she asked for help moving her leg she went too fast and injured her.

 When transferred to a rehabilitation center, she was given a bed too narrow. Not able to control her body in the sitting position, she feared she would fall out. The rails, she explained were just not high enough. With a phone call I got the hospital to send over her old bed.

Patients with disabilities need to speak up and hospital staff should be taught to listen. I was told once by a hospital administrator that they tell nurses to spend more time with patients with disabilities. “Do you” I asked him, “give them less patients or just tell them to work harder?” He agreed that there was no system in place to offering them the care they need.