Medicating — Is 'As Needed' Being Overused?

Are antipsychotic and/or antidepressant drugs being used too routinely to address wandering, induce sleeping, or to control behaviours that are easily redirected were it not for understaffing or staff not trained to manage residents suffering with dementia or Alzheimer's disease?

MEDICATING - THE ELEPHANT IN THE ROOM

"I've seen myself better. I don't feel that good."

— Herbie

My father has never been diagnosed as requiring an antipsychotic or antidepressant drug. So imagine my surprise when I got a call from a nurse the end of December 2016 wanting me to approve a 6.25mg to 12.5mg dose of Seroquel 'as needed', due to "wandering and incidents during the night where he is aggressive."

I was at a loss for words! My father has no history of being aggressive and suddenly at 91 years old, he had a Purple Dot marking him as aggressive. He had only been at the long-term care facility two weeks. I knew nothing about Seroquel nor was I advised of its effects and precautions. I soon did some research and discovered it is an antipsychotic medication used for the treatment of schizophrenia, bipolar disorder, and major depressive disorder. I became concerned. This did not fit with what I knew of my father, and why was I being contacted by a nurse for a prescription such as this and not by a doctor to discuss?

"Antipsychotic medication doesn't actually minimize some of the behaviours they're used for,"[…] "such as wandering." […] "Seniors on antipsychotics have a higher risk of falling. As well, they're more likely to develop an infection, have a stroke or die. Health Canada issued warnings more than a decade ago."

— Welcome to Zombieland, April 2017, everythingzoomer. com, Zoomer Magazine

The effects of 6.25mg of Seroquel on my father were shocking. He was in a zombie-like condition, confused, and very unsteady on his feet. We were very frightened and concerned about his risk for falls and booked an appointment with my father's doctor. On January 06, 2017, it was discussed and decided that Seroquel would be discontinued.

January 21, 2017: I found my father sedated on Seroquel and informed the RN that Seroquel had been discussed with my father's doctor and discontinued.

January 23, 2017: Seroquel was finally discontinued by the LTC facility, for my father.

March 10, 2017: I wrote a letter to the care leader asking to be informed of any and all medication changes.

April 27, 2017: An off-label prescription for 50mg of Trazodone was prescribed for my father without my being informed or consulted. Trazodone is a prescription medication approved as an antidepressant, but more commonly used as an off-label sleep aid, meaning the drug is prescribed for a condition other than that for which it has been officially approved.

July 30, 2017: We arrived at the facility to collect my father to take him out for a Sunday of family fun.

Video #1 - We found him at 10:30am sitting in his chair unable to stay awake and non-functional. We took the video at 10:55am documenting this condition. He was too tired, so we put him to bed to rest/sleep. We were alarmed and very upset, and started asking questions and requesting information.

Video #2, We returned at 2:00pm. It took some time to get my father slowly moving and up for a car ride. He loves a car ride and being outdoors. We took him for a car ride along the coastline for some fresh air, hoping to wear off the effects of the 50mg of Trazodone that had been given to him around 2:45am. After our car ride, we brought my father to our home to monitor. He awoke in short bursts, then would sleep again. By 7:00pm the effects of the Trazodone started to wear off and he was awake for longer intervals. We returned him to the long-term care facility and at 8:45pm he was tucked into bed and asleep. It took my father until August 3rd for the effects of the 50mg of Trazodone given July 30th to wear off to the point where he was stable enough to walk unsupported and returned in spirit.

Video #3, August 8th, 2017 — my father golfing. A happy day.

Video #3, August 8, 2017 6:18pm

Our research on Trazodone revealed that between April 26 and May 31, 2017, my father was given a total of three doses of 25 mg of Trazadone. In June 2017 the amount of Trazodone given spiked alarmingly to nine doses (eight doses at 25 mg and one dose at 50 mg), and in July 2017, 15 doses (11 doses at 25 mg and 4 doses at 50 mg). This "as needed" prescription looked to be more routinely given. Why was the alarming spike not overseen or questioned?

July 30, 2017: I began asking questions. How did this happen? Why was I not informed? Why was the alarming spike not overseen or questioned? No answer was given. I kept asking, "Why was I not informed or consulted?"

June 07, 2018: I was informed at a meeting with the doctor that there was a note on my father's file that his doctor had prescribed Trazodone subject to family approval. My husband and I hold my father's Representation Agreement Authority for Health and Personal Care (Section 9) and are his designated decision makers. The facility has both of our cell numbers, our home number, and we are both easily reachable. Who might they have thought they received family approval from? After the June 07, 2018 meeting with the doctor, I connected with my sibling who had visited my father in April 2017. She had not given permission for Trazodone. "Why was I not informed?" is still a question that remains unanswered. My father's records show that no doses of Trazodone were given from August 2017 to April 2018 and the prescription was discontinued by the powers that be, April 5th, 2018.

"A study in the Canadian Medical Association Journal found that seniors with dementia who were given Trazodone as a sleep aid were as likely to fall as seniors given antipsychotics."

— consumerreports.org By Lisa L. Gill, Last Updated: February 23, 2020

TRAUMATIZING and TRUST SHATTERING

I feel it’s important to try to describe walking into a room to find your loved one, whom you adore, fully sedated on an antipsychotic or antidepressant. I feel that those working in long-term care facilities may have forgotten how deeply horrifying, gut-wrenching, and heart-crushing it is for a family member to see their loved one sedated. It’s a mind-numbing, stomach-churning rush of confusion, anger and deep helplessness combined with an urge to protect. It is trust-shattering. My father, never been diagnosed with needing, nor had it even been suggested by any of his doctors that he needed, antipsychotic or antidepressant drugs before he entered the facility. To see him sedated to the point of Zombieland was traumatic! Don't ever think that discussing medications such as these is not time well spent. Ever! Discussing, being informed and insisting that family consent be sought – this is where an investment of time IS important.

The Office of the Seniors Advocate of British Columbia monitors and analyzes seniors’ services and issues in B.C. It also makes recommendations to government and service providers to address systemic issues. In 2017, it carried out an important survey of people living in B.C.’s residential care facilities. It was the most extensive survey of its kind ever conducted in Canada, targeting more than 22,000 individuals in 292 residential care facilities. The following is a page from that survey that addresses medications. It makes very interesting reading.

I have been told that "there is no time to inform or discuss with family about medications" and "If you don’t agree to the antipsychotic medications, your father may not be a good ‘fit’ for the facility." How many family members have been told this?

This IS important. Our family members with dementia may have lost their ability to voice their concerns, but not their voice or their rights. Advocates and seniors deserve respect, and facilities need to do the work to follow through on this hard conversation if family advocates are not comfortable with the facility's need to medicate.

The medicating of a loved one is the Elephant in the Room. This is a conversation family should be entitled to have with a doctor or a nurse practitioner. This is a very sensitive topic as these drugs have very serious side effects and risks for our seniors. Some medications have a "black box warning," which is the FDA’s most stringent warning for drugs. Black box warnings, or boxed warnings, alert the public and health care providers to serious side effects or serious safety risks. Often these warnings communicate potentially rare but dangerous side effects, or they may be used to communicate important instructions for safe use of the drug. If medicating is more about the lack of staffing or the lack of staff skills, of course family concern or pushback to medicating would be a problem for LTC facilities. And here is the conflict: Families want what is best for their loved one's while facilities need residents to sleep through the night because of skeleton staffing.

We need to engage in conversations with each other, even if we don’t agree. Our unique perspectives add to the narrative and bring us closer to a solution.

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CALLING INTO QUESTION — the overnight shift

14 Tablets Trazodone (TEVA) 50 mg = .84 cents divided by 14 tablets = .06 cents per dose as a sleep aid? or care aide?

It is my understanding that: the LTC facility where my father resides in has one care aide for every 25 residents for the evening shift. Each person has breaks where they are permitted to sleep/rest. Ok — that's important. It does bring up a question, though: When they are on their break and there are 50 residents on that floor, does this mean that the other care aide is now caring for 50 residents?

I can't help but wonder about the statistics of injury, falls, or possibly death in the wee hours of the morning with skeleton staff when residents have been given Trazodone as a sleep aid? I feel it bears consideration to ask.

The night and early morning shift feels worrisome for me. We put our loved ones into long-term care facilities in part because of the 24-hour care that we are told they provide. The overnight monitoring of our loved ones is what, I feel, is most challenging for families trying to manage their loved ones at home. It is the need for overnight monitoring that may be why a family can no longer support the loved one at home and the need for long-term care. However, if LTC facilities don't have sufficient staffing for the night and early morning shift, does the night care aide turn out to be a dose of Trazodone at .06 cents a night for our loved one? If this is the reality of overnight care, is this the care that was envisioned or expected by families? Does this feel OK? Might this look like insufficient staffing? If so, how can we help LTC facilities manage this in a way that supports them in adequately supporting our loved ones overnight.

Put to Bed Early: There were nights we that would visit my father and he was already in his pyjamas and put to bed for the night at 6:30pm! That is a looooong time to expect seniors to sleep – from 6:30pm to 7:30am. No wonder some residents are up in the early morning hours.

INTENTIONS: Let me be very clear with my intentions here. This is not a blog intended to cause harm. These issues, I believe, are systemic. It doesn't matter where my father resides as this may be the way it is in LTC facilities. I'm blogging because these experiences are shocking, infuriating, and may be in place due to fragmentation, understaffing, not enough eyes on what's happening, and funding. I believe better oversight, national standards and governance protecting our seniors need to be part of the Canada Health Act. These problems will take much time and money to resolve, and our seniors need family care, oversight and protecting, now. The voices of family advocates have been silenced right at the time when our loved ones in care need us the most.  Covid-19 is setting a precedent that we have never before experienced, creating an assault on the human rights of our seniors in long-term care. There are just too many issues and problems within the LTC system to revoke, remove, or deny a senior this right of care and oversight by their family advocate or legal representative.

For these reasons, I am supporting the petitioning that our health ministers do the following:

RESTORE the human right of seniors living in long-term care to access their family advocate or legal representative.

GRANT family advocates and legal representatives Essential Visitor status in a federally and provincially mandated process that is fair and transparent.

Covid-19 has been a challenge for everyone and has had unforeseeable consequences. Those of us caring for beloved family members in long-term care could never have imagined this journey of overwhelming helplessness, voicelessness, and grief.  

Please help us, the family advocates, in creating a strong voice that returns residents’ human rights by giving them access to our care and oversight. By signing this petition, you are asking our provincial and federal ministers of health to protect this right from ever again being revoked, removed or denied. By your support, you not only help us help give a voice to our seniors in long-term care, you will be helping your future self, should you find yourself living in a long-term care facility and needing your voice heard. Thank you.

ON A HAPPY NOTE

Here is the latest video of my father taken February 28, 2020 — 94 years old and given a quality-of-life to enjoy life, antipsychotic and antidepressant free!