nursing home abuse

Long-term care: squeaky wheels and raging forest fires

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Although now retired, over a twelve-year period I worked in long-term care (LTC) wearing three different hats:

  • My first job in this industry was in the corporate office of a very fine assisted living and memory care company. In time, I decided to work in one of the company’s facilities so I could spend more time with the residents and families who chose our company for their LTC needs;
  • When I left the company, I took several years off to care for my father who had Alzheimer’s disease. A few years after his death, I became a certified long-term care ombudsman for the State of Washington – an advocate for vulnerable adults living in LTC settings;
  • Concurrent with my ombudsman work I became a trained Alzheimer’s Association caregiver support group facilitator, providing a listening ear to those on the caregiving path.

Given all that experience, I’ve seen and heard of many unfortunate and nasty occurrences where residents and patients were denied the basic rights each living person should expect to receive, especially those dependent on others for their well-being and quality of life.

I’m sorry to say that some nursing homes, assisted living/memory care communities, and adult group homes do not employ sufficient staffing to meet the needs of their residents. I can confidently say that the government agencies that oversee the LTC industry are also understaffed. When complaints are called in, those government employees have to apply grease to the squeakiest wheels and must turn their fire hoses on the most out of control fires in their case files.

That’s where you and I come in.

We must be the squeakiest darn wheels we can be so our complaint(s) are attended to.

We also need to be the hottest, most devastating fire imaginable so that our vulnerable loved one’s rights are respected.

One grievous example. This is just one example of common issues that arise in LTC settings. The complaint process I mention later in this post provides a good starting point when issues arise.

Nursing home call lights are being ignored so that residents/patients are left to defecate and urinate in their adult sanitary garments on a routine basis. Not only is such an act demeaning to the poor soul with no option but to let go of his/her bodily wastes, but said wastes are sure to cause skin breakdown and a urinary tract infection that is not only extraordinarily painful but can also be life-threatening.

What does the family member/good friend do about this indignity? They need to complain vehemently to the administrator of said facility and when she/he does nothing or very little, family and friends contact the local area’s LTC ombudsman program. This website will direct you to ombudsman resources right where you live: National Long-Term Care Ombudsman Resource Center.

Your local ombudsman program will investigate, work with the facility’s staff, and if need be, get the full force of the law to come to the defense of those in need. State ombudsman programs are staffed by paid and volunteer employees, therefore their staffing levels are usually higher than many government agencies. These ombudsmen all receive the same extensive training required for such a vital role. Once you’ve reached a dead end at the facility, ombudsmen are your most active line of defense. They are passionate about what they do and they will ceaselessly advocate for you and your loved ones. Their proximity to appropriate resources and their intimate knowledge of residents’ rights laws makes them an approachable and viable alternative for the common man’s (yours and my) needs. Caveat: if you suspect criminal activities such as physical or sexual assault law enforcement needs to be immediately involved in the matter. Additionally, severe lack of care that endangers the lives and well-being of adults more likely than not will also require law enforcement involvement.

Adults in long-term care settings are a reflection of you and me. By that I mean they were once active and self-reliant adults, just like many of you reading this piece, but they now find themselves unable to fend for themselves and need you and me to step in for them. Imagine, if you will, being in their shoes, unable to speak up for yourself. If you or I ever find ourselves in a similarly vulnerable situation, wouldn’t you want an advocate to step in on your behalf?

Advocacy for vulnerable adults falls on all of our shoulders. You can make a difference in the life of your loved one. Won’t you please step up to become their most important advocate?

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Long-term care residents’ rights: Part 4

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Photo credit: Ian Merritt
Photo credit: Ian Merritt

Welcome to Part 4 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.  Today’s topic addresses substandard and neglectful care.  Let’s look at this scenario:

Take the pressure off Mom

My mother was the quintessential social butterfly but not in the way one might imagine. Her social involvement didn’t include tennis or golf, nor did it center on being seen at extravagant galas around the city. My mother, Joan Young, socialized with the homeless, the hungry, and the vulnerable. Mom was a volunteer extraordinaire whose monthly calendar was filled with opportunities in which she would donate her time, her resources, and her compassion.

One of her most time-consuming, but most gratifying volunteer venues, was as an activity assistant at Shady Rest Nursing and Rehab Center. That same venue is now her permanent home where she’s lived the past month and a half since a massive stroke robbed her of the ability to speak or move her limbs. We think she understands what we say to her because oftentimes she’ll get a twinkle in her eye that appears to relay some sort of connection with us. The experts say she most likely still recognizes us, but even if that is not the case, I hope the presence of smiling, happy visitors go far towards improving her quality of life.

The last few days, however, mom was withdrawn, and more often than not, she slept through my visit. Because I live within close proximity of the Shady Rest, I visit her almost daily. Dad and his wife live another state over, so although they were on speaking terms prior to mom’s stroke, speaking to anyone isn’t really mom’s strong suit right now. I don’t mind carrying the torch for mom; she’d do the same for me.

After four days of a significant reduction in alertness, I talked to the head floor nurse to discuss mom’s change in condition. She assured me that one can expect sudden changes in levels of cognition after the assault that was placed on her body as a result of the stroke. The nurse told me to toss my cares aside and trust the Shady Rest staff with mom’s care. “She’s in good hands, Robin. There’s no need for you to worry. If there is ever anything that needs medical attention, be assured we’ll take care of her.”

But they didn’t.  Three days later, I noticed a fetid smell as soon as I entered her room. At first I thought that perhaps mom had gone Number 2 in her adult diapers but when I lifted up the sheet that covered her body, I saw she wasn’t wearing any.  But oh my God, the smell was even worse. I looked behind me to see if anyone was looking, and seeing that the coast was clear, I gently rolled my mother’s body away from me and discovered the source of the stench: an oozing, red and green sore about the size of a quarter on her left buttocks. I couldn’t help myself; I ran into the bathroom and threw up the lunch I had eaten prior to arriving.

Then I pushed the Call Button which is supposed to summon a health worker post-haste – or so I was told when mom first moved in. Three minutes ticked by: no response. I pushed the button again, this time walking to the doorway of mom’s room to look up and down the hallway for signs of incoming staff members. Not a soul in sight.

I left my mother’s room in search of a staff person and landed in front of the nurses’ station. I pounded on the counter, “Hello! I’m Robin, Joan Young’s daughter. I called you twice from my mom’s room.” That’s when I heard, for the first time, a sound that in the past always seemed to be an indeterminate background noise: the persistent dinging of Call Button tones from various rooms on the floor. A quick glance up and down the hallway also showed lights blinking above numerous rooms that coincided with each ding.

I pounded the counter again and pointed at the LPN sitting at a computer. “You, follow me.”

“Miss Robin, I’m finishing up a report, I can’t leave my desk right now.”

I tossed all protocol to the side, walked behind the counter, pulled the computer mouse out of her hand, jerked her chair back and tilted it forward. “Come with me, now.”

That seemed to work but I didn’t take any chances. I held her hand and pulled her down the hallway into my mother’s room. “Do you smell that?” And then I pulled down the sheet on my mother’s bed, gently rolled her away from us and added, “Do you see that?”

“Oh my, Mrs. Young has a bed sore.”

“Ya’ think? This sore didn’t just materialize in the past three hours ya know. It’s been festering.”

“You could be right.”

“No, I am right. I want you to summon the head of nursing and I want you to summon her now. Tell her to meet me in my mom’s room, ASAP.”  The LPN didn’t move, so I pushed her out the door. “Go!”

*****

The bed sore – or decubitus – had yet to go bone deep. Had that been the case, mom would most likely not have recovered from the infection. As it was, her health never returned to its previous state, even with the excellent care she receives at a different nursing home, thirty miles away from where I live. Sunnyside Nursing Home wasn’t as fancy as the other place, but obviously, looks can be very deceiving. What my mom saw as an activity assistant volunteer was far different from what she experienced as a patient. When we chose Shady Rest as her new home, we did so without the benefit of readily available resources that would have provided red flags as to the quality of care provided. We figured, “Heck, mom loved volunteering at Shady Rest, why look any further?”

Shame on us.

Joan Young was the victim of willful inaction that caused a potentially fatal injury to her person.  Joan’s inability to verbalize or express her pain and discomfort, other than the withdrawal and malaise eventually recognized by her daughter, put Joan at even greater risk of serious health decline resultant from the unattended bedsore.  Facilities must assure that a resident’s body is routinely turned to different and varied sitting and lying positions in an effort to prevent such bedsores.  In addition to bedsore prevention, if Joan had been diligently cared for – for example, if her ongoing bathing and care plan had been strictly followed – any skin abnormalities would have been immediately noted and attended to and infection could have been avoided.

42 CFR 483.25 Quality of care. Each resident must receive and the facility must provide the necessary care and services to attain or maintain the highest practicable physical, mental, and psychosocial well-being, in accordance with the comprehensive assessment and plan of care …

(c)  Pressure sores.  Based on the comprehensive assessment of a resident, the facility must ensure that –

(1)  A resident who enters the facility without pressure sores does not develop pressure sores unless the individual’s clinical condition demonstrates that they were unavoidable; and

(2)  A resident having pressure sores receives necessary treatment and services to promote healing, prevent infection and prevent new sores from developing.  See also Washington State law RCW 74.34.

Some of you readers might be thinking, Well, if her daughter had been more attentive, she would have noticed the sore earlier or Why didn’t she say something about her mother’s malaise right away instead of waiting several days?  Being an armchair quarterback is a very easy position to play.  The very unfortunate – yet somewhat understandable – attitude of some family members and/or patients is: This is a licensed facility staffed by medical professionals; who am I to question their ability to take care of my mother?  The answer to that is obvious: even when a family member moves into a long-term care setting, you must continue to exercise your role as family advocate.  I understand the relief one feels of trusting ones care to a staff of professionals, but the unfortunate truth is sometimes that trust is misplaced.

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 5 of this series will deal with a resident’s right to make choices about their own medical treatment.  Part 5 will be posted on Friday morning, November 21.