Hearings Gone Awry and a Plea to Advocates
I was recently involved in a case as an expert witness. The outcome of this matter was quite unfortunate on many levels and those of us involved wanted to share the experience in hopes of helping others avoid this outcome. I do have the permission of the family, and have changed the names and other particulars to protect their privacy.
Some years ago Neil was diagnosed with early-onset Alzheimer’s Disease. He and his wife, Betsy, immediately executed Advance Health Care Directives. They both understood the progression of Alzheimer’s Disease and knew that a time would come when Neil would no longer be able to make health care decisions on his own. He wanted to ensure that Betsy would be able to make them for him, and his advance directive was written to accomplish that. Neil also had many discussions with his family and friends about what would be a life worth living for him. He indicated that if he were not able to eat by himself, dress himself, and toilet himself, he would not want to remain alive.
Neil is currently in a memory care facility. He is unable to dress himself. He is unable to toilet himself. He is able to eat with his hands, but is no longer able to use a spoon or fork. He no longer recognizes his wife or child. Betsy asked the facility to refrain from assisting Neil with eating, citing the advance directive and what she knows her husband would want based on their many discussions. The facility honored this request and provided Neil with finger foods that he could eat on his own, if wanted. Often, Neil does feed himself; other times, he does not.
A newly qualified ombudsman volunteer came to Neil’s facility. (The Oregon Office of the Long-Term Care Ombudsman is a free service available to residents, families, facility staff, and the general public. Ombudsmen respond to a wide variety of resident concerns, their mission statement being to protect individual rights, enhance quality of life, and promote dignity for residents living in Oregon’s licensed long-term care facilities. [Oregon Long-Term Care Ombudsman Mission and Philosophy].) She observed Neil being offered sandwiches and other finger foods when the other residents were fed such things as soup, spaghetti, or mashed potatoes (food which requires the use of utensils to eat) and questioned it. A meeting was called which included the administrator of the facility, the ombudsman, and Betsy, during which the ombudsman insisted that Neil no longer be given finger food, and that he should be provided assistance with eating if he was not able to eat himself. Betsy objected on the grounds that this was no in line with Neil’s stated desires. While the ombudsman did ask if there was an advance directive in place, she never reviewed it.
The result was a court hearing at which the judge ruled against Betsy. The judge did not question Betsy’s motives; she understood Betsy was only asking of the facility what Neil would ask himself, were he still able to do so. In fact, the judge indicated that she knew her ruling was not what Neil would have wanted for himself. The facility is once again spoon-feeding Neil.
So, what happened here? From my perspective, there were a series of errors during the hearing in interpretation of what is law and what that supposed law may state. At any number of places during the hearing, the judge could have (should have) ruled in Betsy’s favor and issued the protective order, yet didn’t.
However, the single worst offense was the ombudsman’s failure truly understand what Neil wanted in this situation and to advocate for him. She appeared to be more interested in advocating based on her values, rather than Neil’s. Had the ombudsman truly advocated for Neil and what Neil wanted, there would have been no hearing and, therefore, no chance for misinterpretations of administrative rules. The ombudsman failed miserably in upholding her office’s mission statement of promoting dignity to the residents living in long-term care facilities, as well as their vision of ensuring these residents are free to make choices about their care. She was negligent in her duties and failed to protect Neil’s individual rights, enhance his quality of life, improve his care.
Please don’t take this as being anti-long-term care ombudsman, because I am not. I have seen ombudsmen do amazing things in long-term care facilities and, as an organization, I support them and their work fully. I do take issue with anyone who holds themselves out as a protector of those unable to speak for themselves, yet fails to do the work necessary to know what the protected person’s wants and desires are.
What I hope my readers take away from all this is the following: If you are a care-giver for someone (paid or not), if you work in a facility where people needing care depend on others to speak for them, please please please learn about those you are charged with protecting and truly advocate for them. Look at their advance directives, speak with their family, speak with them, learn everything you can about their wants, needs, and desires so that when you advocate for them, you are truly advocating for them. As caregivers, it is our job to be the voice of those for whom we are providing care; our own personal choices should be factor into the situation at all.