Since Baby Boomers and their family members face the possibility of arranging long-term care (LTC) housing for a loved one, or will be on the receiving end of long-term care, I am providing information related to what one can and should expect while living in a LTC setting. This will be a multi-part series wherein I provide a real-life scenario, and the Code of Federal Regulations (CFR) citation applicable to that scenario. Since I live in Washington State, I will also provide the applicable State statute, and I encourage those living in other states to do an internet search for “long-term care residents’ rights in your state” in order to locate your local laws. All scenarios assume that the resident in question is cognitively able to make his or her own decisions.
My kids aren’t the boss of me!
I’m so excited, my soaps are about to start and I have the whole afternoon to myself. I’m looking forward to seeing how they’re going to get rid of Sami. She’s been on Days of our Lives since she was a young teenager; that’s a long time in soap opera years. I’ll just wheel into my bedroom, get my knitting basket, and set myself up in front of the television.
All right, now I’m ready; it’s time to tune in!
There’s a knock at the door, drat, right when my first soap is about to start. “Come in!” Oh no, it’s that perky activity person. When they interviewed candidates for her job they must have had a perkiness contest as one of the criteria for hiring. I’ll see if I can get rid of her real quick-like. “Hello, Ruby, what can I do for you today?”
“What can you do for me? Don’t be silly, it’s what I can do for you that matters, Mrs. Tanaka. We’re showing a movie in the main living room that I’m sure you’ll like. It’s called, 101 Dalmatians, won’t that be great?”
A movie about dogs instead of my soap operas? Not going to happen. “That’s okay, Ruby, I’m happy just watching my TV shows. Maybe some other time.” Now I’ve gone and done it, Ruby looks baffled, not sure how to change the course of her task.
“Mrs. Tanaka, I was told to wheel you to the living room for the movie and not take ‘no’ for an answer.” She pulled a piece of paper out of her smock’s deep pocket and showed it to me. “Look right here. It says, ‘The family has requested that their mother not spend an inordinate amount of time in her room and that she attend at least four activities per week.’ It’s already Thursday and you haven’t even been to one event this week. We have to make up for lost time.” She bent over my wheelchair, unlocked the brake and positioned herself behind it.
“But I don’t want to see the movie, I want to watch television. I love my soap operas and today’s the last day Sami is going to be on Days. Please, I don’t care what my children have requested, I’d really rather stay in my apartment.”
Ruby leaned over, picked up my yarn and needles, and placed them in my knitting bag on the floor. “Come on, I’m sure you’ll like it once you get there.” Pushing with all her might, Ruby escorted me out of my room, thus bringing an end to all my plans for the afternoon. Those children of mine have no right meddling into my private life. “Ruby, whose opinion matters most: the person who lives at this assisted living facility, or those who don’t? This isn’t fair; don’t I have rights?”
Mrs. Tanaka was coerced to go somewhere she didn’t want to go; because she was confined to a wheelchair, her ability to stand her ground by refusing to attend an activity was compromised. Additionally, although this resident can get around her apartment in her wheelchair, wheeling herself long distances is very problematic for her; as a result, once in the living room she would require assistance to return to her room, rendering her a captive audience.
42 CFR 483.10 The resident has a right to a dignified existence, self-determination, and communication with and access to persons and services inside and outside the facility. A facility must protect and promote the rights of each resident, including each of the following rights:
(a) Exercise of rights.
(1) The resident has the right to exercise his or her rights as a resident of the United States.
(2) The resident has the right to be free of interference, coercion, discrimination, and reprisal from the facility in exercising his or her rights. See also, Washington State law: RCW 70.129.140
Mrs. Tanaka has the right to make choices that are important to her. She wanted to watch television – not attend a kids’ movie. Regardless of what her adult children want, Mrs. Tanaka’s rights trump theirs.
42 CFR 483.15 Quality of Life A facility must care for its residents in a manner and in an environment that promotes maintenance or enhancement of each resident’s quality of life.
(a) Dignity. The facility must promote care for residents in a manner and in an environment that maintains or enhances each resident’s dignity and respect in full recognition of his or her individuality.
(b) Self-determination and participation. The resident has the right to:
(1) Choose activities, schedules, and health care consistent with his or her interests, assessments, and plans of care;
(2) Interact with members of the community both inside and outside the facility; and
(3) Make choices about aspects of his or her life in the facility that are significant to the resident. See also Washington State law RCW 70.129.140
Note: there are even more legal citations applicable to the above scenario; a quick search of 42 CFR 483 on the internet provides all laws relating to long-term care residents rights. 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 2 of this series will deal with the illegal practice of requiring residents to sign a Waiver of Liability prior to being admitted to a facility.
Alternate Title: Give me a damn beer!
Lately I’ve read various blog posts mentioning that employees of long-term care (LTC) facilities are routinely disregarding the rights of their residents. What’s that you say? You didn’t know that when these older folks walked through the doors of a facility, thus giving up their cherished long-term independence, they actually gained rights that they never had before? Here’s some information that will benefit you and your loved ones. I’ll explain by way of providing a few examples:
- Charlie moves his mother into a facility and the head of Health and Wellness strongly suggests that he not visit her for awhile so she can adjust to living in a different environment.
WRONG! If mom wants her son to visit her, Charlie should ignore the “advice” of the H&W employee and visit mom as often, and as long, as he and his mom wishes. Logic: What do you think benefits mom most? The calming presence of her son who has been the only constant in her life, or the absence of any person or thing that would lessen the feeling of abandonment in a strange environment?
- June, who is confined to a wheelchair, is forced to go to an activity by facility staff. Apparently June’s family has asked staff members to make sure that June gets out of her room and socializes with other residents. On this particular day June would rather stay in her apartment and watch game shows on television.
Who wins this argument? June should because it’s her life, and neither staff, nor family, can force her to do anything. Logic: Doesn’t someone who’s lived at least 7 or 8 decades have the right to make decisions that are important to her? Yes – and that right is protected by law. Legal implications: June is reliant on others to transport her to and from places, therefore when she’s taken to the activity room against her wishes, the law considers that action as physical restraint because she is “stuck” in the activity room and in her chair, and not able to physically move herself elsewhere on her own steam. Additionally, the facility is guilty of coercion – forcing June to do something she doesn’t want to do.
- George joins his buddies in the dining room for lunch and orders a chili dog and a Bud Lite. When the meals for him and his buddies are served, George’s chili dog has been pureed and his beer has been substituted with a glass of iced tea.
Dilemma: The server tells George that his doctor ordered a pureed diet because George almost choked on a roll at a nearby restaurant and he risks aspirating on his food. The server then tells George, and anyone within hearing distance, that his doctor also said George should not drink alcohol because of his diabetes.
Rights infractions: The server talked about a medical condition in front of his buddies by mentioning two medical conditions: George’s choking hazard and his diabetes. That’s a violation of his privacy rights. George is aware of the choking incident – and he is also aware that alcohol may not be such a good idea because of his diabetes – but he is making an informed decision to eat and drink what he wants, knowing all the risks involved. Solution: Oftentimes facilities are worried about liability in these types of situations – very understandable. To resolve such a concern, all that is needed is to conduct a “care conference” in which the health & wellness director, George, and perhaps his doctor by phone, discuss the risks inherent with George’s decisions. They can easily discern that George has weighed the pros and cons and that although he acknowledges that doctor’s orders have been issued, George decides to disregard said orders. Care conference notes should indicate the gist of the discussion; perhaps everyone in attendance signs their name agreeing that what is written in the notes accurately reflects the points covered in the discussion, and then everyone should be happy and no lawyers need to be involved.
I strongly suggest that you contact the long-term care ombudsman in your state should you have any inkling that your loved one’s rights are being neglected. Visit the National Ombudsman Resource Center (NORC) and join with them to advocate for your loved one. Everyone deserves to be treated with dignity, and certainly all of you would agree that all people should have a satisfying quality of life regardless of ones’ age and residential environment.
Final thought: put yourself in your loved one’s position … what would you want done on your behalf?
Submitted by Boomer98053, a retired Certified Long-Term Care Ombudsman.