Q: Here is another question I got by email, with details changed:
I have a client (call him Joe) who has an unmarried partner (call her Abigail) with diminishing capacity due to encephalitis, secondary to liver disease. Abigail's capacity has diminished to such a point that Joe no longer feels he has a romantic partner, and he wants to dissolve their relationship and have her move out, possibly to a skilled nursing facility. He works full time and can't take care of her to the extent he thinks she needs now, although he has been helping take her to doctor's appointments and meet with specialists about her condition. Abigail doesn't want to move out, and may not be in good shape to make her own decisions about housing, finances, or medical care, nor to care for herself. Abigail has disability and Medicare. Joe would like her to have an evaluation of capacity, but doesn't know how to suggest it. Any ideas?
A: I am not sure of the exact cause of encephalitis, but it sounds as if this is not a condition that is going to get better without curing the liver disease, and possibly not even then. Instead, it sounds like she is getting worse. Basic ethics: Obviously, you know that Abigail needs a guardian who can look out for her best interests. Psychologically, it will be almost impossible for Joe, since he wants to end their romantic involvement, to be able to make an objective judgment of what is best for Abigail.
The first step to getting Abigail a guardian or temporary guardian would be to determine whether or not she can make her own decisions. I would suggest that the easiest approach would be that the next time Joe takes Abigail to her doctor, he should just ask for a capacity evaluation by a neuropsychologist, specifically to determine whether Abigail can manage what are called "instrumental activities of daily living": shopping and planning meals, managing finances, maintaining a home safely, knowing what to do in an emergency at home, preparing food, taking care of her own health, personal care, and medications. It sounds from Joe as if Abigail cannot do these things, but that is for a professional to determine. Joe will probably be an important source of information, since he's been living with her, but the neuropsychologist will also do some testing with Abigail, independent of Joe. I am surprised that no one has already done this for her if she has encephalitis. Joe needs to ask for it. Medicare will pay, though the neuropsychologist may have to bill it under a mental health code, rather than a medical code.
It might be helpful for Joe to write out some things that the capacity evaluation should address: Here are my suggestions:
How much can Abigail understand about how she gets her financial support?
Can she interpret a bank statement, and can she list her various bank accounts?
How much can Abigail understand about her own medical condition?
How much is Abigail able to understand the various housing options and health care options that are available to her?
How able is Abigail to fill out forms for Medicare, or forms to apply for other benefits?
Can Abigail understand and remember which medications she has to take?
Does she remember to take her medications?
Can Abigail describe the steps she would have to take to prepare a meal, including shopping?
Does Abigail drive? Has her driving been evaluated by a specialist?
Is Abigail able to understand that her romantic relationship with Joe is over?
Does Abigail always remember to turn off the stove?
Does she know what to do if something on the stove catches fire?
Could she handle an emergency, such as a fire, at home if she was by herself?
Until you start to break it down, you don't realize how many aspects of daily living require mental capacity and problem-solving. The courts won't need to know what Abigail scored on a neuropsych test as much as they will need to know how her performance in testing relates to these critical self-care abilities.
If Abigail really is incapacitated mentally and cannot take care of herself, then she needs someone to make important decisions for her. A guardian obviously cannot force Joe to continue to provide housing for Abigail if he doesn't want to, but if she can't make her own decisions about housing, then someone else, whose job it is to look out for Abigail, should be making those decisions to get her into a housing situation with home health care or a skilled nursing facility that can take care of her.
It sounds like a heart-wrenching and difficult situation, and Joe must feel terribly guilty. Please reassure him that he really cannot continue to make decisions for Abigail, and that he can best serve her by getting her the evaluation she needs, and then help start the process to get her an objective decision-maker who can help her.