Unsafe to go home.

My research assistant thought Mr H was handsome despite his Amyotrophic lateral sclerosis (ALS). He was a 40 something, stylish in gym clothing, and looked like he might get up from his wheelchair if he had reason to. He was a little unkempt, because he could not raise his arms to comb his hair, and he complained that the one nursing home attendant capable of shaving him was off that week. His speech was slurred. We had great trouble understanding him and made some embarrassing misinterpretations. He patiently corrected us. We were one of his only visitors in the nursing home, and our ability to keep track of him as he discharged himself from a series of long-term care facilities must have impressed him. He was an accountant and estranged from his wife. His wife had barred him from seeing their son. He insisted she was an incompetent parent. He cried when he told us how their 8-year-old son called him at the nursing home once and asked how to make dinner. The mother was out and had not arranged anything. Social services placed the boy with his mother, but she refused to bring his son to the nursing home. The only family visitor was a reluctant sister who refused to take him into her home. He had his first ALS symptoms over the summer, fasciculations and inability to move his thumb, then fatigue, and slurred speech. By October, the neurologist had made the diagnosis. He managed reasonably well for the next 2 years. He stopped working and went on disability. He began receiving home care from United Cerebral Palsy, 8 hours a day. Fortunately, his apartment hallway and doors were wide enough to allow wheelchair access. With a van equipped to carry the wheelchair and a sympathetic home attendant, Mr H was able to maintain an intensive program of physical therapy that he had designed for himself. He made sure he got to the gym daily where he used exercise machines for strength training. He worked his arm and leg muscles as best as he could. This was his passion. He said he had no interest in hastening his death: ‘‘Would I be doing all this therapy in that case?’’ He received quarterly evaluations at the ALS clinic, participated in clinical trials when eligible, and by all accounts seemed to be managing well. His situation changed when he fell one evening. He was alone in the apartment and unable to get up and back into the wheelchair. The home attendant discovered him the next morning on the floor, battered, and bloody. Mr H asked the home attendant not to call emergency medical service (EMS) and instead use the Hoyer lift in the apartment to put him back in the wheelchair. But the home attendant called his supervisor and was advised to call EMS. Mr H also asked the paramedics to put him back in his chair and leave him at home, but they were concerned about his safety. He was admitted to the hospital. From then on, Mr H heard the same refrain ‘‘We don’t feel safe doing that’’ from the hospital discharge planner who refused to authorize discharge back to his home and sent him to a nursing home; ‘‘without family or 24-hour home care support, we cannot discharge you’’ from nursing home staff. Mr H was officially ‘‘medically unsafe to go home.’’ He railed against this treatment. ‘‘Whether I die in 2 months or 7, I will still die. They just want me to die safely! They have absolutely nothing for me here but think they’re doing me a favor.’’ At the first skilled care facility, he quickly alienated staff who responded with impressive bureaucratic revenge. First, he was told that physical therapy opportunities at the facility were inappropriate for him. When he protested, he found that the physical therapist was available only at 8 AM, when he was receiving morning bathing care and breakfast. Then, he was told that since he had ‘‘refused’’ physical therapy, his insurance would no longer pay for it and he would not have access to the therapist. His efforts to leave were also thwarted. When pressing for discharge to hospice, he discovered that the nursing home considered him a suicide risk, hence the delay. Then, there were the daily indignities of nursing home care. He claimed he was left on the toilet for an hour and a half, which led him to quip, ‘‘I might as well be on my own at home.’’ When his Gatorade was stolen for the fourth time (he had already given up recovering stolen clothing items), he asked, ‘‘If this is happening to me now, what will happen to me when I can’t move at all?’’ He participated in a meeting with staff, which he requested, but failed to get redress for any of his concerns. Despite this series of setbacks, he proudly reported that