A little alone time

Haldol and Dementia
This winter, my mom went to the hospital.  We live in a rural area,  the sort of town where road apple bingo used to be an annual game at the town festival,  and both responding emt's knew us personally from years of acquaintance.  There are only two hospitals in our 800 square mile plus county,  and we had decided long ago that one did not deal with dementia well.  Balking at asking the ambulance to drive us half an hour one direction or forty five minutes the other (where mom's primary care physician is),  I opted to request that we be taken to the other county hospital.  I knew very little about it,  only that were her condition serious we could insist she be transferred somewhere bigger.
I breathed a sigh of relief and a prayer of thanks upon discovering that the night er nurse on duty was a trauma nurse-  apparently a very rare find in small town life.  This man was wonderful,  both in medical knowledge and in bedside manner.  A patient with even mild dementia can be trying,  as evidenced once by a doctor who responded to mom's repeated questions by finally snapping at her in raised tones.  (Prompting the change to a geriatrician forty-five minutes away.)  This nurse kept his patience and good humor admirably,  as did the doctor on call.  In fact,  our experience at the hospital was overall quite good-  except for one glaring blight upon the experience.  Without my permission,  they gave my mother Haldol.
At check-in,  I informed the nurse that if mom became agitated she could call either myself or my sister.  When I returned the next morning,  I was informed that she had become agitated,  but that they had given her something to help her sleep.  Naively,  I assumed this meant she had been given some form of a mild sedative.
That day was Sunday,  and she had to stay until at least Monday for me to talk with the doctor.  (Remember,  small town  hospital with non-emergent condition).  Monday morning I was again informed that she had been given something to help her sleep due to agitation.
It wasn't until meeting with the doctor that the "H" word came out.  He was telling me that he wanted her in for another day,  and I had just queried if he thought she'd be alright.  "Sure,"  he said,  "we'll just give her more Haldol."
Cue screeching record player here.
I'm a masters level LSW.  That may not mean a lot in practically in my life right now.  What I'm grateful it does mean,  however,  is that I have had a Master's level psychopathology course.  Otherwise I may have done what other children of elderly patients with dementia probably due all the time-  ignorantly assume that a doctor would not give their loved one something dangerous.  As it was,  while I couldn't be positively certain,  something was tickling my brain-  a memory of Haldol being not a mild sedative but an anti-psychotic,  and not a particularly nice one at that.
Cue frantic phone call to internet connected sister here.
From a quick web search,  she was able to tell me that the NIH website had a box prominently displayed at the top warning that Haldol,  or Haloperidol as it is more properly termed,  is linked to an increased risk of death in elderly patients with dementia.  What is more,   the FDA has not approved its use in this population.  This was enough for me to go out to the nurses' station and speaking with the doctor.
"Excuse me,  I thought you were giving my mom an sleeping pill,  not an antipsychotic."
His response basically involved the belief that,  while there was a chance that it could make the dementia worse, it was necessary when she was out of control and not responding to the Atavan.
Cue screeching record number two.
Wait just a second-  you gave my mother Atavan and Haldol both?
Just to clarify-  you gave my mother who,  while thank God the dementia is mild,  is obviously confused,  two psychotropic drugs,  one of which is a powerful antipsychotic,  and didn't think it was worth notifying her caregiver?
When I came home,  I researched the drug more carefully in my alma matter's online database of peer reviewed scholarly articles. 
 Here's an example of what I found:

• One study found a 26% increased risk of death in nursing home residents with non-Alzheimer's dementia receiving conventional antipsychotics versus those receiving atypical antipsychotics.  The increased mortality was evident within 8-10 days and lasted through the 6 months of the study.  Among conventional antipsychotics,  Haloperidol accounted for 45% of prescriptions.  (Liperoti, R.,  Onder G.,  Landi,  F.,  et al:  J Clin Psychiatry:  2009)
• "Pharmocologic agents are minimally,  if at all,  effective in managing the neuropsychiatric symptoms of dementia."  Of these,  the atypical antipsychotics are the most effective,  though Haloperidol may be slightly useful for reducing aggression.  (Sink,  KM,  Holden,  KF,  Yaffe,  K.,  JAMA:  2005)
• ".....despite there being no FDA approved indication for antipsychotics in dementia,  and in addition to an FDA-issued black box warning about the risk of mortality,  antipsychotic medications are still being used to treat the behavioral disturbances of dementia."  Rebecca C. Rossom and colleagues found cohorts taking Risperdal, Zyprexa, and Haloperidol experienced significant increased mortality within the first 30 days of use,  though the risk appeared to drop off after thirty days.  
• The FDA first issued a black box warning for atypical antipsychotics in 2005;  it was expanded in 2008 to conventional antipsychotics.  Even low doses,  i.e. 1 mg of Haldol did not mitigate a greater risk,  though increased doses did increase risk.  (Rossom RC,  Rector TS,  Lederle FA,  Dysken MW,  J Am Geriatr Soc:  2010)  
• "In patients with dementia,  Haldol reduces aggression but does not reduce agitation and increases some adverse effects."   (Lonergan E, Luxenberg J, Colford J. Haloperidol for agitation in dementia. 2001)

Now I also spoke with a doctor friend whom I love and respect,  and she did shed some light on the doctor's point of view.  There is little they have in their arsenal to use on patients posing an active threat to themselves or others.  I'm reasonable:  when a patient is responding to nothing else,  and is out of control and posing an imminent risk to their own safety or the safety of others there may be a need for such chemical sedatives.  
However,  remember when I told the nurse that she could call me should mom become agitated?  They never did that prior to using the drugs.  They never did that until I told them not to give her that drug again without calling me first,  that I would come and sit with her.  
Which is what I did the next night.  I came,  and slept in a chair next to her bed.  She was absolutely fine with me there.  As a bonus I was able to receive the indulgent little pleasure of having her doctor informed that she was fine with me around.  
I'm not only sharing this story because the telling is cathartic.  I'm telling it because I want people to be informed about this subject.  One of the nurses informed me,  when I left that evening (and prior to my being called back in) that they would not give her Haldol per my wishes but it "was a good drug".  With medical professionals who share this view,  how often does the use of this drug go under the radar of families and caregivers who do not know about the dangers?  Were I not a social worker,  I would not have even thought to question it.  Certainly,  my mom was not capable of fully comprehending the implications of what she was being given.  Now the one or two doses she was given did not hurt her in reality.  What,  however,  if she had been in the hospital for a month as an elderly aunt recently was?  Even more disturbing is the thought of all the nursing home patients and hospice residents who are given this drug regularly without the full comprehension of caregivers who trust the wisdom of medical professionals.  
I've learned through my caregiving experience many valuable lessons.  One key lesson is this:  question medicine around dementia.  


Also,  thank God for psychopathology.