Welcome to Part 5 of my series on long-term care (LTC) residents’ rights. Part 1 focused on a resident’s right to make choices that are important to her. In Part 2, I discussed the topic of LTC admission procedures, specifically, a Waiver of Liability document that is oftentimes included in the admission packet. Part 3 addressed eviction/discharge from a long-term care facility, and Part 4 addressed abuse and substandard care. Today’s topic addresses a resident’s right to choose, or reject, prescribed medical care.
A pile of poo disguised as a hot dog
I guess when you don’t have a choice in the matter you gradually come around to liking life in the assisted living “community” as the staff at this facility like to call it. When I couldn’t get around my old place without the constant threat of falling in the neighborhood or falling asleep at the wheel of my 1994 Mercury Sable, I took my son’s advice as gospel, and let him move me five miles from my lady friends, and ten miles from the Baptist church I had attended for God knows how long.
Now, my only option is to attend an ecumenical service in the activity room each Sunday – it more or less satisfies those who rely on some sort of ritual to get them through the following week – and I have a completely new set of lady friends with whom I eat every meal.
It must be baseball season; for lunch today, the dining room is decorated with red, white, and blue crepe paper and the centerpieces contain a miniature bat and ball placed “just so” surrounded by a pile of sticky Cracker Jacks that we’re told are not edible, but I try one anyway and add credibility to the admonishment by spitting it out into my napkin.
Lord have mercy, we even have a special lunch menu from which we can choose what apparently is considered food one would eat at sporting exhibitions: hot dogs, hamburgers, fries, all served with a gigantic phallic-looking dill pickle on the side. Now, don’t act so shocked. The young people don’t think us older folk know what the intimate body parts are called and that we would never know what to do with them even if we did, but let me tell you, my group of lady friends have a laugh or two over things of a sexual nature. We’re not dead yet and most of our memories of such things are still intact.
The four of us ordered the chili dog special and got caught up on all the latest news since the previous time we saw each other. About ten minutes later, my meal was served, followed by everyone else’s, and the young server said, “Bon appetite!” But something was horribly wrong. Before the gal got too far away, I beckoned her back to the table. “Sweetie, what is this pile of dog-poop looking stuff on my plate?”
“That’s your chili dog.”
“My lady friends ordered the same thing I ordered and yet look at each of theirs: a hot dog is nestled into a bun, smothered by chili, cheddar cheese, and a few onions. My hot dog, on the other hand, looks like a pile of poo!”
The waitress addressed me, and therefore all the other ladies at the table. “We have a Special Menu report the kitchen & wait staff are required to review before each meal. There was an entry for you stating that all your food must be pureed because you’ve been having difficulty swallowing. Evidently, when you went out to dinner with your son a couple days ago, you almost aspirated on a piece of flank steak. Remember? The Maitre d’ of that restaurant had to Heimlich you. You could have choked! You won’t choke on pureed food – or at least we hope you don’t – so that’s what you have to eat. Doctor’s orders.”
My lady friends looked embarrassed for me and pretended that this youngster wasn’t talking about my health issues in front of everyone within hearing range. But that’s not the only thing that’s bothering me right now: I want to eat a chili dog that looks like the rest of the chili dogs on the table so I decided to tell the server. “I’m sorry, remind me of your name, sweetie?”
“My name is Jessica.”
I picked up the plate of poo and shoved it towards her. “Jessica, please toss this mess in the trash and bring out a real chili dog, and while you’re at it, I want a hefty serving of French fries as well.”
“I can’t do that Mrs. Bellamy, I’ll get in trouble.”
“You’ll get in trouble if you don’t provide me with the food that I’ve requested. Please take this plate away from me, my arm is getting tired holding it up.”
The youngster took my plate and with the other hand, signaled her boss to join her in the kitchen – no doubt to report my aberrant behavior. My lady friends, however, applauded my assertive efforts, and offered me a bite of their dogs while I waited for mine to be served.
Mrs. Bellamy’s pureed diet was prescribed by her doctor; as such, it is now a part of her medical profile at the assisted living facility in which she lives. Mrs. Bellamy chose to ignore her doctor’s orders – certainly her right whether she lived in her private home or this public facility. Residents at LTC facilities have the right to refuse prescribed treatments such as restrictive diets, medications, or physical therapy to name a few. As cognitively capable adults, they have the right to go against doctor’s orders, fully understanding the risks of not abiding by such orders.
42 CFR 483.10
(b) Notice of rights and services.
(1) The facility must inform the resident both orally and in writing in a language that the resident understands of his or her rights and rules and regulations governing resident conduct and responsibilities during the stay in the facility…
(3) The resident has the right to be fully informed in language that he or she can understand, of his or her total health status, including but not limited to, his or her medical condition;
(4) The resident has the right to refuse treatment, to refuse to participate in experimental research, and to formulate an advance directive as specified in paragraph (8) of this section; …
(d) Free choice. The resident has the right to –
(1) Choose a personal attending physician;
(2) Be fully informed in advance about care and treatment and of any changes in that care or treatment that may affect the resident’s well-being; and
(3) Unless adjudged incompetent or otherwise found to be incapacitated under the laws of the State, participate in planning care and treatment or changes in care and treatment. See also Washington State law RCW 74.42.040(3)
Additionally, Mrs. Bellamy’s medical condition should not have been discussed in front of everyone within hearing distance: her lady friends, other residents seated adjacent to Mrs. Bellamy’s table. The HIPAA Privacy Rule also applies in LTC settings. Jessica, the server, violated Mrs. Bellamy’s right to privacy by talking about her medical condition.
If you or a loved one need assistance regarding LTC residents’ rights, contact your local LTC Ombudsman office which can be located at the National Long-Term Care Ombudsman Resource Center.
Part 6, the final installment of this series, will deal with dignity and quality of life. Part 6 will be posted on Wednesday morning, November 26.