Mr. Ford was 92. He was scheduled to be discharged from the hospital on the following day. Plans had been made by his physicians and his Care Manager to send him to a Skilled Nursing Facility (SNF). He would go there to get his strength back since he had become generally weak and was no longer able to walk.
He had spent the prior two weeks in the hospital. His family brought him to the emergency department when he became increasingly debilitated at home. He was admitted when lab work showed that he was dehydrated. During his admission more problems were discovered by his medical team. He had congestive heart failure that was making it difficult for him to breath and he was infected with C. dificile diarrhea.
Until two months ago Mr. Ford had been healthy enough to live independently with his wife, but also needing the strong support of family living near by. His mental status was never in question. He was fully aware of all the events that had led to this admission. He had never fully recovered from a bout with pneumonia two months earlier. It was the antibiotics he took to treat the pneumonia that caused his susceptibility to the C. dificile diarrhea. It was his second bout of this infectious diarrhea. His doctor thought he was getting better when it returned with a vengeance. He just couldn’t get rid of it and it was about the worst experience of his life. He had become so weak he could no longer walk to the bathroom. And that meant that he needed to wear adult diapers and he needed someone to change them when they were soiled. It seemed that the diarrhea was constant for awhile. His wife wasn’t able to help with this part of his care. She was 87 and not even able to care for herself. The Ford’s granddaughter, Lisa, had agreed to stay with them to see them through this crisis. The home health aide and visiting nurses were a help when Lisa had to go to work. It had been six weeks now. She had been a godsend and she loved her grandparents very much.
When Mr. Ford arrived in the room where he would be admitted, the staff noticed that he had dried feces on his legs and buttocks. They cleaned him efficiently and politely. He was humiliated. Again. He had grown tired of all of this. His diarrhea eventually subsided with the help of the intravenous medications he was given. But he had no energy to eat. He even lacked the energy to talk to his family when they visited him. But he apologized to his wife for this as she sat sadly and quietly at his side. The heart failure was not getting better and he knew that it would not. His heart was old. He was old and feeling so worn out. A tear slid down his cheek as he tried to make his wife understand that he was tired. He told her he was ready to let his life be over. If only he could return home just one more time.
When her grandparents told her this, Lisa called her family together to see what was possible. Could they help Mr. Ford to go home? Would they agree to let him accept the care of hospice? Could they help him to go home to die? Were each of them ready to let him go? The large family was ready to give Mr. Ford his wish to go home to die.
The following day, three members of Mr. Ford’s family were in his room when his physicians arrived to tell them that they had completed all the paperwork, the ambulance had been scheduled. Everything was ready for him to go the SNF. His family told them of the change of plans. They told them that Mr. Ford wanted to go home. They told them that they were ready to take care of him. And, yes they knew that he would likely die in a few months. The physicians seemed to be upset by this news. They were insistent that Mr. Ford should go to the SNF. He shouldn’t give up. He could get better. He didn’t need to accept death now. They eventually won the family over and Mr. Ford was discharged to the SNF for rehabilitation.
This is a story from my experience in an acute care teaching hospital. It is one that makes me feel sad and angry even today as Mr. Ford’s wishes for end of life care, though clearly stated by the patient and his family, were over-ruled by the medical staff. To me it is an abuse of the power when families that don’t have the savvy to negotiate these complex care systems are dissuaded from enacting their own values. Mr. Ford was never strong enough to return home and died in the nursing home where he never wanted to find himself.
Tomorrow’s post will be a discussion of some of the factors at play for patients like Mr. Ford.