Meet Jenny, an 80-year-old nursing home resident who suffered from dementia, hypertension, diabetes, and depression. She was hospitalized because of rectal bleeding. What happened next is a common scenario for the elderly suffering from dementia. In the hospital, Jenny became agitated, commonly seen in patients with dementia due to the foreign environment. The response to her agitated behaviors was to order Haldol (an antipsychotic) and Ativan (an anti-anxiety) medication. Jenny was already taking an antidepressant. Now she was on three psychotropic medications, which were continued when Jenny returned to the nursing home. Jenny’s return marked the beginning of an 86-day, downward spiral that ended in her death.
Timeline of events upon her return:
· Day 1: Jenny was extremely agitated, screaming and crying to go home. The nursing home responded by injecting her with Haldol, 1mg intramuscularly. (This antipsychotic medication was on top of the daily dose carried over from the hospital stay).
· Day 3: Jenny was lethargic and had hyperextension of her neck. (Both are known side effects of the antipsychotic medications.) She was sent to the ER for evaluation; the Haldol dose was reduced by 0.5 mg.
· Day 13: Jenny refused to take her medications and had one episode of screaming and crying. The physician was notified. The facility’s response was to change Haldol to liquid form for easier administration and to increase its dose. There are notations on this same day that Jenny’s body was rigid and her appetite poor. (Both possible side effects of the medication.)
· Day 15: Jenny had increasing rigidity of her trunk and was unable to sit in the wheelchair, so she was placed in a reclining chair.
· Day 28: Jenny expressed that she had pain in her knees; a cream was ordered to apply to her knees for the pain.
· Day 38: Jenny had an elevated temperature and was found to have sepsis due to a Urinary Tract Infection. She was sent to the hospital.
· Day 40: The hospital performed a swallow evaluation and concluded that Jenny’s difficulty with eating was due to her decreased alertness. (Decreased alertness is a side effect of the antipsychotic medications.)
· Day 41: Jenny was placed on another medication, Artane, which counteracts the adverse side effects of Haldol. Yet, the physicians kept Jenny on the same dose of Haldol.
· Day 47: Jenny returns to the nursing home.
· Days 47-56: Jenny again complained of knee pain. One day, she called out for her son. She was given Ativan. She was noted to be eating poorly.
· Day 57: Haldol was increased to 1 mg 3 times per day; a second antipsychotic, Depakote, was ordered at the dose of 125mg twice daily.
· Days 58-70: Jenny cried intermittently, which some nurses recognized as a result of her knee pain. She was given Tylenol.
· Day 70: Depakote was increased to 250 mg twice daily for the episodes of crying out.
· Day 71: Jenny had difficulty swallowing and needed to have her fluids thickened to prevent choking.
· Day 75: Jenny was so constipated that she was impacted with stool and required a suppository. (Constipation is another frequent side effect of Haldol.)
· Day 77: Jenny developed a pressure ulcer, also known as a bedsore.
· Day 83: Jenny was dehydrated and malnourished.
· Day 85: Jenny developed pneumonia.
· Day 86: Jenny died.
The story of Jenny is sad but true, a common one in many nursing homes. Many people do not recognize that the source of Jenny’s downward spiral was the use of antipsychotic medications. It is easier to give agitated, elderly residents medication/s that will calm them rather than determine the underlying cause/s of the problem, particularly in a person who may be unable to communicate her needs. However, taking the easy road by administering these medications is essentially a form of slow killing. These medications come with a BLACK BOX warning that reads:
WARNING
Increased Mortality in Elderly Patients with Dementia-Related Psychosis
Elderly patients with dementia-related psychosis treated with antipsychotic drugs are at an increased risk of death. Analyses of seventeen placebo-controlled trials (modal duration of 10 weeks), largely in patients taking atypical antipsychotic drugs, revealed a risk of death in drug-treated patients of between 1.6 to 1.7 times the risk of death in placebo-treated patients. Over the course of a typical 10-week controlled trial, the rate of death in drug-treated patients was about 4.5%, compared to a rate of about 2.6% in the placebo group. Although the causes of death were varied, most of the deaths appeared to be either cardiovascular (e.g., heart failure, sudden death) or infectious (e.g., pneumonia) in nature. Observational studies suggest that, similar to atypical antipsychotic drugs, treatment with conventional antipsychotic drugs may increase mortality. The extent to which the findings of increased mortality in observational studies may be attributed to the antipsychotic drug as opposed to some characteristic(s) of the patients is not clear. HALDOL Injection is not approved for the treatment of patients with dementia-related psychosis (see WARNINGS).
Despite these warnings, according to a Forbes article in November 2013, “More than one out of every five nursing home residents is still being given powerful antipsychotic drugs despite a growing consensus that they are inappropriate and often dangerous.”
What is being done? There are advocates for the long term care industry who are working to reduce the use of antipsychotics in the elderly. One of those groups is The Long Term Care Community Coalition. Here is the link to a fact sheet it has published on the subject: http://www.ltccc.org/publications/documents/antipsychotic-drug-dementia-care-guide2013.pdf
A DIFFERENT OUTCOME:
The hospital and nursing home could have developed care plans for Jenny with the goal of determining the root cause of her behavior (her knee pain) and treating it. They could have checked for and treated other sources of discomfort: Urinary tract infections are common in this population; during her 86-day downward spiral, Jenny suffered with one. They could have implemented interventions such as engaging family members to help with the transitions of hospitalization and re-admission to the nursing home. They could have kept a consistent aide that Jenny was comfortable with. They could have used pictures of family members or a blanket, doll or other memento to bring comfort. They could have spent time discovering her past and what made her tick. Was it music? Play that music. They could have found out that she loved everything with chocolate and tea and provided that each day.
Note: These suggestions are examples of non-drug interventions that the law requires facilities to use in order to treat behaviors.
How can you ensure your loved one does not receive unnecessary antipsychotic medication?
· Review your loved one’s medications with the physician or nurse, or at the care plan meetings. If your loved one is already on anti-psychotropic medication, find out the reason for it. What is the diagnosis? What are the behaviors? What are the symptoms? If the resident was put on the medication in the hospital, ask if she can be weaned off it. If the resident has been on a medication for a behavior, ask to see the mechanism for monitoring the behavior. This behavior should be documented daily, specifying how many times it occurred. Ask to see this documentation. If the behavior has not continued, ask the physician if the medication dosage can be gradually reduced.
· Make sure that the staff knows your loved one’s personal history. Everything that your family member enjoyed in the past should be known to the staff. I witnessed several women who loved babies be comforted by carrying around a doll. This will not work for all residents. It may make someone else become “worried about the baby” and therefore become agitated. The key here is knowing what is comforting or familiar to a particular resident. If the resident was accustomed to taking a walk every day, see if she is receiving an ambulation program. If the resident liked certain music, make sure playing that music is on the care plan. The use of iPods is beneficial for this purpose. This short film shows the power of music: https://www.youtube.com/watch?v=fyZQf0p73QM#t=96.
What are the resident’s favorite foods and eating routines? Maybe this resident had tea with toast and jam at 4 p.m. every day. Make sure that is on the care plan. Maybe he drank a little glass of wine every day at 5 p.m. These types of interventions are very individualized and are worth trying.
· Ask to see the care plan addressing behaviors. Ensure that the care plan includes at least the following: 1) Looking for the source of the behavior, such as pain or a urinary tract infection. Find out what may be causing the discomfort that the resident otherwise cannot express. This is not dissimilar to having a baby who cannot express her discomfort. If a baby is crying, we feed the baby, change the baby, check for any source of pain or sickness, or place the baby down for a nap. Look for the activities that may trigger agitated behaviors. An example of an activity that commonly triggers behaviors is bathing. Does the resident become resistive to being bathed by a staff member of the opposite sex? Try to eliminate or minimize these triggers. 2) Frequent rest periods. 3) Customary routines (See previous bullet and make sure all the pertinent history and comforting routines are included in the care plan.)
· If a staff member calls you indicating that he is going to place your family member on an antipsychotic medication, find out what the diagnosis is, what the symptoms are and find out what non-pharmacologic interventions have been attempted. You have the right to refuse the intervention if you feel the facility has not shown just cause for placing your loved one on the medication. Remember, if these medications are given to residents with dementia with uncontrolled behaviors, the facility must have exhausted all non-drug interventions first. Additionally, the behavior/symptom they are treating with the medication must be considered a danger to the resident or others, at which time these medications may be beneficial as a temporary measure (1-2 weeks at most).
· If your family member is on antipsychotic medication and there is a decline in functioning or appetite or the development of a swallowing problem or a pressure ulcer, inquire whether the facility has considered the use of the antipsychotic medication as an underlying cause of the decline. By regulation, this should be considered. The benefit of the medication versus the risk should always be considered for anyone on these medications.
Note: There are circumstances where these medications are beneficial and necessary for agitated uncontrolled behaviors. However, it should be a last (and temporary) resort. If you feel your loved one is being medicated unnecessarily and your efforts with the facility have not been effective, please seek help through the Ombudsman program or call your state’s abuse hotline, or your state’s Medicaid fraud control unit.