I’m not a medication expert.
I know next to nothing about drugs.
I have never met a pill I wanted to take.
Is that blatant enough about my ignorance so my next thoughts are taken with a grain of salt? Nay, not a mere grain. Instead imagine an overflowing wheelbarrow of Morton’s when-it-rains-it-pours overpriced sodium!
Since I’ve confirmed my lack of qualifications, let me share a few biased opinions about . . .
Haldol. Ever heard of it?
In the hospice meetings where medications are discussed, haldol often appears on the list of drugs for the comfort and care of patients. Whenever I see it, I think of my father. And I also think about families I’ve worked with or heard about over the years that question any drug taken by a loved one. Haldol prompts many of those questions . . . the curious ones and the concerned ones.
Developed in the 1950s, and in regular use since the 1960s, haldol is the shortened version of Haloperidol. According to webmd.com:
Haloperidol is used to treat certain mental/mood disorders (e.g., schizophrenia, schizoaffective disorders). This medicine helps you to think more clearly, feel less nervous, and take part in everyday life. It can also help prevent suicide in people who are likely to harm themselves. It also reduces aggression and the desire to hurt others. It can decrease negative thoughts and hallucinations.
There are many sites like webmd with an unadorned clinical description of haldol. There are also many cautionary articles about haldol, where it’s blamed for misery, mistreatment, or even death. Since haldol has been given to those with Tourette’s syndrome, a haldol web hunter may stumble across references to a 1990 episode of “L.A. Law.” In that show, attorney Jonathon Rollins (actor Blair Underwood) defended a client with Tourette’s . . . likely one of the first times the disorder became part of a national conversation. I don’t think “L.A. Law” mentioned haldol, but any search for the treatment of Tourette’s, with or without the handsome Rollins defending a client, will include haldol.
Like morphine, haldol can scare* people. We don’t want loved ones in pain, but if morphine is mentioned as an option for the physical anguish patients frequently experience, some immediately resist. What if he or she becomes addicted? What if morphine hastens death? What if it means you’re pain free, but can no longer communicate?
We don’t want loved ones to have “negative thoughts and hallucinations,” but if haldol is mentioned as an option for the troubling delusions and negative feelings patients can experience, some immediately resist. As with morphine, the haldol what-ifs of addiction or over-sedation worry caregivers.
In his early nineties and in the later stages of dementia, my father had hallucinations. Once, while I visited my parents, Dad became convinced an injured woman was yelling in the backyard. On his wobbly legs, the man who taught me how to ride a bike struggled down the hallway to my room in the dark, urging me to help him save the person. It was a raining. It was near midnight, with no movement other than branches swaying in the wind. Dad was convinced we must rescue her. Now! I got him back to bed. Thirty minutes later, after hearing movement from his room, I checked on him. He was outside, braced against his walker, on the verge of crossing the rain slick lawn to respond to the imagined screams for help that only he could hear.
He got worse after that night. Delusions. Agitation. Anger. Dementia was never kind to my father.
Dad would eventually take haldol. I hated that it flowed through his veins. And I was grateful that the necessary drug reduced some of his worst symptoms.
Haldol is a wonder drug. We wonder what bad things might happen when it’s used. We wonder if we’re doing the right thing when giving permission for its use. We wonder if the one we love will ever be the same again.
Haldol—because it’s easy to find horror stories on the Internet—is accused of being abused in hospitals, at skilled nursing facilities, and by hospice personnel. All of the dreaded and wonderful drugs that may help a dying person find relief from pain or agitation, from delusions or aggression, rightly make everyone nervous. But the right dosage in the right circumstance, given by a caring and conscientious medical staff, can provide relief.
If you, as a hospice patient or caregiver, don’t want a drug used, you can say no. In Medicare’s patient’s rights statements, you can “refuse care or treatment.” While drugs like haldol may be perceived as the best response for the patient, all of the kind and compassionate nurses and doctors I have known in hospice will seek an alternative if that’s what a family requests.
Truly, it is your right to say, “No.”
But also truly, there may come a time—a time no one wants and no one is ever prepared for—to listen to the options available for the care and comfort of a patient.
How I wish Dad had never taken haldol. But in the narrowing, terrible choices available as his dementia worsened, and as his dying loomed, it was one of many treatments that brought a little comfort, and a little calm, in the fierce storm of his final years.
*I debated the “best” word to use to describe reactions: scare, unsettle, bother, anger, confuse? All of those and more can be responses to haldol (and other “serious” drugs). All reactions may increase in anguish unless you share openly and with an open mind to the medical staff helping you.
(Hospice vigorously protects a patient’s privacy. I’ll take care with how I share my experiences. Any names used are fictitious. Events are combined and/or summarized.)by