Recently, I happened to be involved with two patient families that were struggling with the question: What is the right thing to do for my loved one who has advanced dementia? In one case, an elderly gentleman was the primary caretaker for his wife. She had a series of falls at home and presented with a wrist fracture. Her husband was persuaded by others to place her in a nursing home where she promptly fell again; this time, she fractured her right hip. After surgery to repair the hip, she was discharged to a different facility. However, not long afterward, she was back in the emergency department, with a fracture of her other hip. What really left a lasting impression on my mind was her husband's comment:
I should have kept her at home. Everyone was telling me she would be better off in a facility and I went against my own judgment when I should have taken her home. No one can take care of her like I did.
The second situation occurred a week later. I was called to see Mary, a 92-year-old woman with advanced dementia, who presented with a stage 3 decubitus ulcer to the emergency department. The consult stated that "she was too much for the family to care for and she needed to be placed." I met with her three daughters who had been caring for her at home with absolutely no assistance for a period of many years. One daughter had quit her job so she could be the primary caretaker for her mother; one of her sisters was hemiplegic after a cerebrovascular accident, and the other sister took care of the hemiplegic sister and assisted the primary caretaker as best as she could.
As I sat there, it became apparent that this was a family committed to caring for their mother at home. The woman who was hemiplegic was holding her mother's hand and talking to her. The daughters were not the ones saying they could not care for mother at home; the visiting nurse, who had made a first visit that day, had said she needed to be seen secondary to the decubiti. The patient herself was bed-bound and nonverbal, but she was at rest and looked quite peaceful.
The sisters did not want to place their mother in a nursing home. I spoke with the family and her primary care physician who said he would prefer to get the patient home; the patient and the family had been very clear that they wanted to avoid placement if at all possible and to have her die comfortably at home. I was able to order a hospital bed; arrange for a skin care nurse consult, increased nursing and home health aide support, and a physical therapy evaluation to see the family's ability to transfer her; request a referral to elder services to see about the possibility of getting the family some respite care; and ask that she be screened for increased services in lieu of nursing home placement. And the patient went home!!
Both of these families did their very best to deal with very difficult situations. Sometimes there is no right or wrong answer, and people need to be given all the available options with pros and cons so they can make an informed decision as to what is the right choice in their situation at that time. Too often, members of the healthcare team pass judgment and pressure people into doing what they feel is best. The nursing homes were considered bad because the patient fell twice. Well, reality is that some people are at high fall risk and will fall wherever they might be.
Our job is to keep them as safe as possible. The home nurse felt that the family could not care for Mary and she needed to be placed. Yet Mary's family was doing the best they could with no support. I strongly feel that the goal of the case manager and the healthcare team is to assess the situation and provide information to the families, to let the patient and families decide what they feel they need to do. It is our job to support the decisions they make and to mobilize the available resources to assist them in being successful. The worst thing that might happen is they fail at home, but at least, they would know they did the best they could do. As case managers, we are frequently working with people when they are most vulnerable, but it is so important that we hear what they tell us and that we support them in the choices they make. It is very difficult for families and they need our assistance and support, not our judgment.