Sugar Land Neurologist
I remember when I first started seeing this particular patient. Her daughter, who was her primary caregiver, always accompanied her to her visits. Mrs. X. was a little combative at times, but I could always make her smile. Her diagnosis was a probable moderate Alzheimer’s-type dementia. Her memory loss and dementia had progressed to the point where she could no longer take care of herself at home, and her daughter was finding it increasingly more difficult to provide the care her mother needed at her home. Collectively we decided that it was time for her to move into an assisted living facility with a special memory-care section. At first there was resistance from Mrs. X, but with continuous efforts and support, she started participating at the assisted living facility and interacting with her neighbors. Everything regarding her care was going as well as could be expected until a series of events turned the case upside down. In spite of a few discussions about the subject in clinic, this particular patient had never officially established her daughter and caregiver as her health care proxy under a durable power of attorney. A durable power of attorney is a legal document that allows for a person to designate someone else to act on his or her behalf if the person becomes disabled or incompetent.
What happened in this case is this: One of Mrs. X’s other children, a son, decided that he wanted to assume the care of his mother. Unfortunately, there appeared to be some financial incentives for him to do so. Since no official durable power of attorney was in place, he was allowed to move his mother out of her assisted living facility into a nursing home closer to where he lived. By this point I had received several calls from my patient’s daughter seeking my assistance to stop her brother from what he was doing. I even received calls from their personal banker because the brother was trying to draw the majority of the mother’s estate. Lawyers got involved, but unfortunately I couldn’t do much more than declare that the patient did not have capacity to make her own decisions and let the courts handle it. Capacity is a medical term that has to do with a person’s ability to understand his or her medical condition and to make good decisions regarding his or her health care. Competency is a legal term and must be established by the judge. In the meantime, my patient was being moved to a new environment in which I had little oversight into her care. Though this patient was not competent enough to make sound medical and financial decisions on her own, because the appropriate documentation was not in place, she was taken advantage of.
I share this story to bring up an important point. In my neurological clinic, I see a number of patients with dementia or other memory impairments. It is important that we begin the conversations early on regarding medical-legal documentation. When people have a neurological condition that causes their memory and decision-making capacity to slowly deteriorate, they will eventually need someone or some entity to assist in making sound health care and financial decisions. It is for this reason I begin the discussion earlier rather than later. By asking questions early, I help the patients themselves retain much more power and influence over their own affairs. The most common complaint I hear from families and from patients is that I am trying to take away patients’ independence. It’s actually my goal to do the opposite. The goal of these conversations is to help them maintain their independence by documenting their wishes and fully communicating with whoever they would like to make health care decisions for them if they are no longer able to do so. Doing so could cut back on future conflicts involving family and friends. Having a neurodegenerative disease like Alzheimer’s disease or other dementias is serious enough and causes many challenges for the patients and their families. Having these conversations regarding a person’s wishes and documenting them in the appropriate way provides a layer of security, decrease stress, and creates an environment for the best long-term care. I wish in this case I had pushed the issue more. Then potentially this long and drawn-out legal battle could have been avoided.
In summary, to avoid situations like this and provide the best long-term care for my patients, I have incorporated discussions about legal documentation early in my clinical relationship with patients, particularly in situations where I feel a lack of documentation could pose an issue later on. We owe it to our patients to make sure that we discuss all aspects of their care, even ones as difficult as this.