Joan had a bad experience at a short-term rehabilitation facility that I will call by the fictitious name Sandalwood. Shortly after Joan arrived, the facility's doctor implied that it would cost Sandalwood more to take care of her than he had expected. He seemed annoyed about this issue. The rest of Joan's stay reflected a similar lack of focus on helping her recover.
Joan was very weakened after barely surviving serious complications of a medical treatment. She could not even shift position in bed. She required very frequent and thoughtful hands-on attention to keep her safe and comfortable and to improve her health.
It is a best practice in healthcare facilities to put patients with the greatest needs closest to the nursing station. But the opposite was done when Joan arrived at Sandalwood. She was taken via wheelchair to a room at the absolute opposite end of a very long hall from the nursing station, and put into the bed there.
Joan rapidly concluded that Sandalwood was seriously understaffed, because pressing the call button had no effect. She reported, "I remember vividly lying in my own s--- for 2-1/2 hours, trying to get someone to come down, (pressing the call button)."
Two years later, she is still angry. Given her many medical problems, this lack of attention wasn't simply annoying and degrading. "I could have died," she pointed out. As it was, "I was in extreme pain because I was lying in a position that was not comfortable." And this sort of neglect went on the whole weekend.
Her husband Greg set up a meeting on Monday with the Director of Nursing in which both he and Joan complained forcefully, and Joan was moved to a room much closer to the nursing station. But pressing the call button still did not summon help. Day after day, Joan's basic care needs were not met.
She continued to struggle. Her son and his family flew in from across the country, hoping to cheer her up. Shortly after they left, Joan turned her head towards Greg and said beseechingly, "Help me. I just can't breathe. I really can't breathe."
Greg, she reported, responded by "flying down the hall" to summon help. Within 20 minutes, an ambulance arrived to take her to the emergency room. There, she noted, "They took six liters of fluid from my body. I was blown up like a balloon. My lungs weren't working right and they said I was in congestive heart failure. My electrolytes were all screwed up. I was starting to have kidney problems, too, because of all the fluid." In other words, she was dangerously close to dying.
All of these problems could have been avoided, and Joan improved once she started getting the proper care. Her recovery was slow, however, because she had declined so much - after starting out in a very weakened state - during her 10-day stay in a facility that didn't meet her medical needs.
How can you avoid similar spectacular failures in care? Greg's initial impulse is a sound one: Talk to a higher-ranking staff member such as the Director of Nursing. Clearly explain the problems, noting dates, times, and staff members involved if relevant.
Joan added, "Don't take excuses." You may be told, for example, that problems arose because it was the weekend or someone was on vacation or the right equipment wasn't available. None of those facts justifies a failure to provide essential care to residents in any care facility. People need to be taken care of 24/7 - that is why they are there - and it is predictable that nights and weekends will arrive, that staff will take vacations, and that equipment will be needed.
There is no unspoken requirement that you patiently subject yourself to the indifference or negligence that our healthcare system sometimes displays. You are not obliged to pay with your life for trying to cooperate with your care providers and simply accept the care you are given.
Cut your losses if the situation does not rapidly improve enough to safeguard your health once you have pointed out the gaps. Start looking for another site to move to. Next week's column will discuss how to choose one.