It is understandable that so many people, like me, would find the New York Times article “Phony Diagnoses Hide High Rates of Drugging at Nursing Homes” horrifying. And to make matters worse it is my belief from experience that situations like this—using chemical restraints—are playing out far too often in long-term care facilities around our country. One case is too many, and we can likely multiply this instance by hundreds or thousands.
The article discusses Mr. Blakeney, a new nursing home resident with severe dementia. With no evidence of having Schizophrenia, Mr. Blakeney was given a diagnosis of the disease in order for the nursing home’s doctor to put him on Haldol, an antipsychotic medication used as a chemical restraint.
Giving someone a diagnosis of Schizophrenia, such as what happened to Mr. Blakeney, who was restless and agitated, in order to gain access to antipsychotic medications to “control behaviors” and sedate is irresponsible and inexcusable.
We must go deeper to understand why this is happening so that we can put realistic plans in place to get far better outcomes—outcomes that we can all be proud of.
All people, especially our vulnerable elders, deserve so much better. So, let’s go deeper and uncover some of the real issues in dementia care that underlie this failure to serve our elders with dignity, respect, and humanity.
The Catalyst for a Reduction in Chemical Restraints
In 2005 the FDA issued a black box warning label on antipsychotics (like Haldol, the medication prescribed for Mr. Blakeney) about the risk of increased mortality when used in the elderly for behavioral symptoms of dementia. Using these chemical restraints on our elders with dementia can cause significant harm—this well-known fact was a key catalyst for the Center for Medicare and Medicaid Services (CMS) to require nursing homes to reduce their antipsychotic drug use. But CMS also stated staff should use nonpharmacological interventions first, whenever possible. Herein lies one of the key problems.
Achieving Different and Better Outcomes
We can’t expect real and sustainable change to occur by simply declaring a mandate to alter what has been a far too common practice. The ability to reduce the use of drugs to “control behaviors” hinges on staff being able to implement person-centered and nonpharmacological interventions to prevent or calm behaviors, FIRST. There must be a commitment to the entire plan—and it must be realistic—in order to achieve different and better outcomes.
What good is a goal or a requirement without realistic plans to achieve the goal? New directives and regulations in an industry that has so many challenges and regulations can easily get pushed aside without the attention it needs and deserves to succeed. Simply taking drugs away was NEVER going to be an answer because behaviors such as hitting, kicking, and biting frequently occur. Let’s help nursing homes and other elder care providers by providing some realistic action steps to both train and mentor staff. Better yet, put regulations in place to ensure they receive employees who are already trained via their certification or education curriculums. Then it is more than fair to hold them accountable, and we must because lives are at stake.
I don’t believe all nursing homes medicate and use chemical restraints just so “they don’t have to hire more staff” as the NY Times article suggests. As in any industry, there are bad apples out there—far too many in fact. But there are also good nursing homes, especially those owned and operated by individuals or families who really care far more about the individual than their bottom-line profit.
We Need to Consider the Workforce
Although many facilities plan to be well-staffed, we can’t deny that we are currently in the midst of a nationwide labor shortage. Additionally, nursing homes often lose staff because they are afraid to go to work in fear of getting injured by an aggressive resident as a study showed. The 2006 study of nurses working in long-term care in Minnesota found a staggering 77% of the nurses said, “I expect assault as a possible consequence of the job.”
To really understand their fear, we must imagine walking a day in the shoes of a front-line staff person. A CNA for example, who is providing ADL care, can be frequently physically assaulted by a resident who is agitated. This is a root cause of this bigger problem of over-use of antipsychotics. The person in care feels threatened or violated and protects his/herself, causing the staff person to feel unsafe, and so we end up with three vulnerable entities in this recurring storyline. The patient/resident, the CNA, and the facility are all at risk.
Few of us would welcome a job in which going to work likely means we will be called horrible names, get hit, kicked, or punched.
If we put ourselves in the shoes of the worker, we understand they too are vulnerable.
Both the team member and the person in their care are vulnerable and deserve protection. The solution to this horrible problem is found in understanding the realities of the situation and empowering a compassionate workforce with education and training that makes a difference on the job, every day.
Remember that Behavior is Communication
Understanding the distress a person with dementia feels and the fact that their “behavior” is often a communication that something is wrong, is an essential perspective when putting together effective plans and solutions to achieve better results for all, especially the person living with dementia.
Do staff know how to identify distress behaviors? Do they know what to do in the moment to calm and prevent escalation to a crisis, and in the process protect the resident(s) and themselves from harm? From my experience, they often don’t. This is where real change in the trenches needs to happen and means staff must be prepared with advanced knowledge and skills. Let’s look at a common scenario.
- Too often a patient/resident with dementia will express a distress behavior like pacing, restlessness, or refusal and the staff member does not stop and address those feelings. Instead, they ignore the feelings and “push through to get the task done.”
- And in response to the patient/resident’s expressed refusal, that staff member may say something like, “Come on Mr. Smith, let’s take a shower now.”
Ignoring the distress and “pushing through to get the task done” is akin to unknowingly throwing gasoline on the flame.
The resident who is restless, pacing, or refusing is likely frightened. Ignoring this fear or making statements that take control away—or can be misinterpreted as such—sound like the aide is forcing the resident to shower. These staff responses to resident/patient distress can be a catalyst for escalation to agitation or aggression.
But, if the team member was trained to use a nonpharmacological approach first, having the skills to stop and skillfully respond to calm at the earliest signs of distress, escalation to a crisis could be avoided and chemical restraint use may not be necessary.
I’ve worked in a variety of environments serving elders with dementia for over 30 years—nursing homes, assisted living, home care, hospitals—and the scenario I lay out above happens multiple times a day, every day. We must educate and empower staff with practical, day-to-day knowledge and skills to use care approaches that demonstrate respect and dignity, gain or regain trust and agreement, and calm when distress behaviors arise . . . and they will.
Distress Behaviors Occur in a Continuum
A key point to keep in mind is that distress behaviors, such as restlessness, anxiety, refusal, and physical or verbal aggression, occur in a continuum. If we successfully intervene when we observe a person to be restless, which is a lower behavior severity level, we have a very good chance of reducing the likelihood that it will escalate to agitation or aggression.
Read the NY Times article again with this new perspective. If when Mr. Blakeney became restless and staff used the nonpharmacological interventions first to respond to meet his needs and calm him, perhaps the frequency and severity of his agitation would have been minimized; rendering the sedating and dangerous drugs like Haldol to be unnecessary. That’s the goal and the two parts to a solution: 1. train and empower staff and 2. successfully decrease the use of antipsychotics to “control behaviors.”
Delivering Better Care for Better Outcomes
Those living with dementia are vulnerable and have a high risk of becoming stressed and experiencing distress behaviors. Those behaviors are their way of telling us something is wrong. They have an unmet want or need. They are feeling anxiety, sorrow, or fear. They are telling us that, in that moment, they are feeling extremely lonely, sad or vulnerable, anxious, out of control, violated, or threatened. The priority for all of us who work in health care is to compassionately respond and skillfully alleviate the causes of those feelings rather than rely on chemical restraints as the first solution.
When we know better, we must do better. We must protect the vulnerable, which are our elders living with dementia and our nursing home staff. Dementia care is hard, complex work. Learning how and when to use nonpharmacological interventions must be a priority for all who provide care to elders with dementia. When a CNA gets their training, it likely includes little to no instruction on how to support a person at different stages of dementia, or how to use nonpharmacological approaches to respond and calm distress behaviors. Think about how life could have (and should have) been different for Mr. Blakeney, and for the workforce, if staff had this expertise.
In my opinion, what are the key pieces to better care that deliver a better outcome for all?
- Establish realistic goals and plans to reduce unnecessary use of these dangerous antipsychotic drugs.
- Make high-quality dementia and behavior training a requirement for any person working with elders with dementia and mental illness.
- Make a requirement that any certification/training program for nursing assistants, nurses etc. must include some amount of training on dementia care and nonpharmacological interventions. Don’t put all the burden on the employer (aka the nursing home) to do the training. Make it a condition of receiving the nursing assistant certification, via their mandated education.
- Have a non-biased, educated committee review and approve quality training programs that can be used.
We must STOP any unnecessary use of these powerful drugs that were developed for diagnoses like Schizophrenia, and not for elders with dementia.
I don’t want one more person to have to experience the horror that Mr. Blakeney and his family endured. I don’t want one more nursing assistant, nurse or any other caregiver have to go to work unprepared, fearing for their safety, and getting injured on the job.
Real and good change can happen for all. We can increase quality of life for the elder and decrease staff abuse. But broader plans such as the above must be put in place, or it won’t. That’s the sad truth. Let’s take action and make the world a better place for those living with dementia, their loved ones, and all those who care for them.
Kim Warchol, OTR/L, is President and Founder of Dementia Care Specialists at Crisis Prevention Institute.