Monday, December 24, 2012

A Christmas Message


LeadingAge offers a daily news clipping service as one of its membership benefits. So each day I get an e-mail with links to a half dozen or so current news articles that relate to aging and aging services. This morning one of the articles is from an article originally in The Boston Globe, but quoted from the San Francisco Chronicle. The article is about lack of enforcement for inappropriate use of antipsychotics on nursing home residents in Massachusetts, particularly those living with dementia. It's not a happy Christmas Eve message, but one that too often is found in newspaper and journal articles -- reflecting a tragic reality for too many elders in our country.

I quote just one sentence here, but include the link to the article also:

“A few reports detailed cases when residents were so overmedicated
they were unable to open their mouths to eat or do much but sleep.”

I venture to say that in too many “typical” traditional nursing homes it would not be unusual for a visitor to observe one or more residents at the dining room table so sedated that it was difficult for staff to assist him/her with the meal. Do we just smile such scenes away with some misguided, “sweet” myth that elders just sleep more?

Federal and State regulations forbid use of antipsychotics for the “treatment” of “behaviors” for good reason. Such use does not address the issues at hand, does damage to the resident physically and psychologically and is a cruel imposition of “treatment” – fierce and deadly chemical restraints – on helpless individuals. It is abuse clear and simple and must be stopped.

Not a pleasant message to post on Christmas Eve. However I am reminded of Howard Thurman’s message, “The Work of Christmas.” I offer it here. We must do what we can to “heal those broken in spirit” and to “radiate the Light of Christ . . . in all that we do

When the song of the angels is stilled,
when the star in the sky is gone,
when the kings and princes are home,
when the shepherds are back with the flocks,
then the work of Christmas begins:
to find the lost,
to heal those broken in spirit,
to feed the hungry,
to release the oppressed,
to rebuild the nations,
to bring peace among all peoples,
to make a little music with the heart…
And to radiate the Light of Christ,
every day, in every way, in all that we do and in all that we say.
Then the work of Christmas begins.


Newspaper article quoted can be accessed at:

http://www.sfgate.com/news/article/Report-Mass-rarely-nixes-nursing-home-sedatives-4141901.php




Tuesday, December 4, 2012

“Would you give your mother . . . ”

Later today the Missouri Quality Improvement Organization is providing a webinar for those involved in long-term care. The topic is antipsychotic medication use in the elderly. The phrase that I have used as the title of this post heads one of the slides for this presentation and goes on to list the serious negative side effects of all categories of antipsychotics. It’s scary, really to read all the side effects in one place at one sitting.

A few thoughts come to mind about this. When antipsychotics are used to “treat” “behavioral issues” as a result of dementia, the drugs don’t work! The drugs don’t address the “cause” of the “behavior.” So in addition to not working, the resident living with dementia suffers a myriad of negative side effects, not the least of which includes strokes and as much as a 1.7 fold increased mortality.

My second thought: no, I would not give that to my mother. Who would, really, if one is informed about these issues. This surfaces the importance of being fully informed. Within birth families, when a parent begins to show signs of increased frailty or cognitive disabilities, the adult children are often bewildered. It’s all a new experience; they have little or no knowledge of the aging process or of the avenues of appropriate services that can and should be provided. Often times, there is an admission that when the second parent needed more services, the adult children were more knowledgeable and comfortable in providing them or seeing that they were provided. The adult children have through their previous experiences become informed about appropriate issues: aging process, medications or other treatments, and how to make a decision of informed consent in keeping with the wishes of the parent.

And thirdly, for those of us who live in communities of Religious Institutes, we shouldn’t feel so flustered. Seeing our mentors, our congregational giants, and our friends move along this path, it is not so new to us. With our experience, with our growing knowledge of the intricacies of aging, normal or with more chronic disorders, we should be able – in a very informed way – to companion our Sisters wisely, gently, compassionately and competently.

Thursday, November 15, 2012

"An Encore Presentation" -- Lee Chung Hi


This entry was posted originally on August 10, 2008. I have put it here 'at the top' of my blog again because the story, told by Steve Shields, is so profound; because the story is so well-written; because the description of "traditional" nursing home care is so heart-breaking when viewed from the humanistic, holistic view of culture change; because the story has such a wonderful, inspiring ending for all of us in service to elders.

--- "In screaming, Lee Chung Hi had used her only tool for hanging on to herself…" ---

Original post:  August 10, 2008:
This blog entry is longer than most of mine. The sacredness, poignancy and deep symbolism of the story that I excerpt here, however, merits its telling. It's a story of a woman with courage, reaching out in the only way left to her, and of an exceptional leader who trusted his gut instincts about his nursing home which kept telling him: 'It can be better. We must make it better.'

The author of the events recounted in the story that follows is Steve Shields, CEO of Meadowlark Hills, a nursing home, in Manhattan, Kansas that Steve guided from "traditional" nursing home to "home", an ongoing journey. I know Steve. He is an effective, professional executive, a leader with qualities stretching across the four types of leadership: intellectual, reformist, revolutionary and charismatic. (For more information about these types of leadership, see Sister Joan Chittister's address at the 2007 LCWR Assembly when she was presented with the Outstanding Leadership award.) Steve's actions flow from a profound faith and contemplative spirit.

I direct you to the book, quoted here, (co-written with LaVrene Norton another faith-based driven advocate for our frail elders). In Pursuit Of The Sunbeam: A Practical Guide To Transformation From Institution To Household. Published by Action Pact Press, 2006.


FROM CHAPTER ONE: 'The Way It Is."

"She screamed for years but nobody ever really heard it until she stopped. It was a shrill, penetrating, constant and unsettling shriek; a noise not readily identified as human. Words were not part of it. She could not form them. Instead, it was the cry of a trapped and desperate animal hoping someone could hear and understand. The howl haunted the nursing home corridors like a shackled ghost intent on settling its business, belying that the source of the sound was less than five feet tall, not even 90 pounds and unable to walk.

Her Asian skin was healthy and beautiful. The Meadowlark Hill staff moistened it with lotion, turned her at night and positioned her at specified intervals. Lee Chung Hi lived year after year, perched in a reclining Geri-chair. It kept her safe and in place. Her graying black hair was brushed and shining. Vital signs were monitored with regularity and her care-plan was carefully executed. She was bathed on schedule at three 'clock on Tuesday and Friday afternoons. By all valued and applied measures in long-term care, she was well cared for. In the nursing notes, and in the minds of all who cared for her, the never-ending screams were the result of dementia . . . an illness of the mind, which surely must have caused her initial placement. But then nobody remembered for sure.

The other residents were routinely lined up outside the dining room to wait for lunch. Lee Chung Hi ate alone in her chair, parked in the corridor farthest from where people gathered. Nobody – residents, staff or visitor – wanted to be near her. Caregivers attended to her dutifully, yet her noise repelled them. She ate alone, sat alone and slept alone.

She became her noise in the eyes of everyone. But nobody could hear her screaming for what it truly was. It never occurred to us that we might be the cause of it – we, who carry out the biddings of a system lethal to the human spirit.

Years passed before we finally understood it. And not until we transformed Meadowlark Hills into a vibrant household community and witnessed Lee Chun Hi's parallel transformation did we realize how profoundly appropriate her screaming had been in response to the dehumanizing conditions in which she lived."


FROM CHAPTER SIX: "The Essential Elements of the Household Model"

"I rang the doorbell and Susan, a household employee, answered the door and welcomed me in. I saw a warmly furnished living room and an adjacent kitchen and dining room; all appointed like any other home in America. The residents, an average of sixteen per household, had moved in less than two weeks before.

The signs of home were already visible amid what previously had been public corridors, cramped bedrooms and large public gathering rooms. The institutional odor was gone. My stomach growled in response to the smells of breakfast floating from the household kitchen. The previous set of monotonous unit style chairs, tables and other office-like trappings had gone to the auction block to make way for more cozy furnishings.

People were visiting with one another and, in stark contrast to the dismal scene of slumping, slumbering elders once parked at the now-dismantled nurses' station, a more inspiring dance of life unfolded. My heart warmed with hope.

But all the blossoming signs of home faded into the background when my eyes found Lee Chung Hi, the lady who screams. She had abandoned her Geri-chair and was sitting comfortably at the dining table, just as my wife had sat at our kitchen table when I left home for work that morning.

It was the first time I had seen Lee Chung Hi when she wasn't screaming.

She was smiling. Her eyes locked with mine, conveying a warmth of well-being that sent me into a suspended sense of time and place. All I could see was her warm smile and radiating eyes of peace, and I felt myself walking toward her as if in slow motion.

I stopped near her table. With her hands at her side, she bowed her head slowly forward and then back up, all the while continuing her smile. This gesture of greeting and respect, practiced in her culture yet universally understood, enveloped my whole being. I found myself returning the gesture in full communion. I was able to return eye contact and nod in mutual affirmation before emotion overtook me.

Her years of screaming, contrasted with the moment we had just shared, represented to me everything we must leave behind and everything we must achieve. The glaring reality was that she hadn't screamed for years because she was sick, but because we were.

In screaming, Lee Chung Hi had used her only tool for hanging on to herself rather than giving in to vacant slumping. She was a fighter -- a screaming indictment of the traditional nursing home system and proof in the pudding that we can overcome; that we have a moral imperative to do so."

Friday, November 9, 2012

Does Honoring all Creation Include Having Pets Live in our Homes?

Texas LeadingAge has a short article in this Friday’s e-newsletter entitled “Senior Care Center Sees the Power of Pets.” A not-for-profit nursing home in the greater Dallas area is featured. Mary Poole, Director, attests to the physiological and psychological benefits that pets bring to the residents who live in her center. The video is 2 ½ minutes long and is worth watching.

Viewer advisory: there are scenes of residents lined up in chairs totally unengaged, and there are some “slumpers.” Not the reality we want to see in today’s nursing homes. However the scenes with the pets are replete with LIFE!

For those of us who profess a strong adherence to Creation Spirituality, does that conviction extend to four legged furry creatures that bring such life by their very presence?

Granted, any pet living in a more-than-one household must be a good community member. Not every cat or dog is suitable for a nursing home. Personality, temperament and adaptability are important factors. But beyond that, what is the sticking point in so many retirement centers that prohibit the ongoing, in-house presence of pets as part of everyday-life?

Comments anyone? Any great in-house pet stories to share? See "Post a Comment" below.

Here is the link to the video:    Senior Care Center Sees the Power of Pets


Wednesday, October 31, 2012

When an Older Adult is Hospitalized


One journal that I always look forward to receiving in the mail is Caring for the Ages from the American Medical Directors Association. The current issue, October 2012, is chuck full of great articles. I write about only one of them here.

When an elder is hospitalized, there is a high risk for the onset of delirium. Delirium was once perceived as a short-term, transient cognitive disorder. Now there is increasing evidence that delirium carries longer-term effects on cognitive function.

Studies which show such results highlight the importance of “proactive interventions” to prevent delirium and to lessen its impact if and when delirium is diagnosed. One highly recognized program that addresses this very issue is the Hospital Elder Life Program (HELP).

The website for that program is this: http://www.hospitalelderlifeprogram.org/public/public-main.php

I encourage readers to access that website for the valuable resource that it is.

On the left side of the HELP homepage, you will find numerous helpful links. For anyone who is responsible as a family member for an elder, click on the “Older Adults/Caregivers” link near the top of that long list of links on the left. There is a wealth of information there for the elder and for the caregiver.

As a corollary to this topic of delirium, I’m reminded of some writings of Jerald Winakur, MD, a geriatrician in San Antonio, Texas. Dr. Winakur-- speaking both as a geriatrician and a son who cared for his elderly father – says again and again that an elder should never be left alone the first night s/he is in the hospital.

Good reading for good advocates! Carry on your noble work!





Wednesday, October 10, 2012

Information about Psychoactive Drugs

Yesterday I posted an article about antipsychotic drug use on our elders in nursing homes. Today I post this table for your use. It is a list of all the drugs that CMS looks for in reporting on usage of antipsychotic drugs in nursing homes.


 

You can Google the name of any drug here and learn much more about that drug's intended (on label, FDA-approved) use and its side effects.


 

DRUG

On Label Use

Trade Name(s)

Clozapine

Schizophrenia

Clozaril,

Gen-Clozapine

Haloperidol Deconate

acute psychosis, schizophrenia, and Tourette's syndrome

Haldol

Droperidol

Used as an antiemetic and antipsychotic. Droperidol is also often used for neuroleptanalgesic anesthesia (a state of quiescence) and sedation in intensive-care treatment

Inapsine, Droleptan, Dridol, Xomolix, Innovar

Loxapine

Loxapine is used to treat the symptoms of schizophrenia

Loxitane

Thioridazine

Thioridazine is used to treat the symptoms of schizophrenia

Mellaril

Molindone

Molindone is used to treat the symptoms of schizophrenia

Moban

Theothixene

Thiothixene is used to treat the symptoms of schizophrenia

Navane

Olanzapine

is used to treat the symptoms of schizophrenia

Zyprexa

Pimozide

Pimozide is an atypical antipsychotic drug used to treat serious motor and verbal tics associated with Tourette's syndrome

Orap

Fluphenazine Deconate

An antipsychotic medication used to treat Schizophrenia. It is a highly potent behavior modifier with a markedly extended duration of effect.

(This is an injection medication.)

Fluphenazine

Fluphenazine is an antipsychotic medication used to treat schizophrenia and psychotic symptoms such as hallucinations, delusions, and hostility.

Prolixin, Permitil

Quetiapine

Quetiapine tablets and extended-release (long-acting) tablets are used to treat the symptoms of schizophrenia

Seroquel

Risperidone

Risperidone is used to treat the symptoms of schizophrenia

Risperdal

Mesoridazine

Mesoridazine is a neuroleptic drug used in the treatment of schizophrenia.

Serentil

Promazine

An older medication used to treat schizophrenia.

Sparine

Trifluoperazine

Trifluoperazine is used to treat the symptoms of schizophrenia

Stelazine

Chlorprothixene

Chlorprothixene's principal indications are the treatment of psychotic disorders (e.g. schizophrenia) and of acute mania occurring as part of bipolar disorders.

Cloxan, Taractan, Truxal

Chlorpromazine

Chlorpromazine is used to treat the symptoms of schizophrenia

Thorazine

Acetophenazine

Acetophenazine is an antipsychotic drug of moderate-potency. It is used in the treatment of disorganized and psychotic thinking. It is also used to help treat hallucinations or delusions.

Tindal

Perphenazine

Perphenazine is used to treat the symptoms of schizophrenia

Trilafon

Lorazepam

Lorazepam is in a group of drugs called benzodiazepines and is used to treat anxiety disorders. Includes

Ativan

Oxazepam

Oxazepam is used to relieve anxiety, including anxiety caused by alcohol withdrawal

Serax

Prazepam

Prazepam is indicated for the short term treatment of anxiety.

Centrax

Diazepam

Diazepam is used to relieve anxiety, muscle spasms, and seizures and to control agitation caused by alcohol withdrawal.

Valium, Valrelease

Clonazepam

Clonazepam is used alone or in combination with other medications to control certain types of seizures. It is also used to relieve panic attacks (sudden, unexpected attacks of extreme fear and worry about these attacks).

Klonopin or Klonapin

Hydroxyzine

Hydroxyzine is used to relieve the itching caused by allergies and to control the nausea and vomiting caused by various conditions, including motion sickness.

Vistaril, Atarax

Halazepam

Halazepam is indicated for the treatment of anxiety.

Alapryl, Pacinone

Chlordiazepoxide

Chlordiazepoxide is used to relieve anxiety and to control agitation caused by alcohol withdrawal.

Angirex, Elenium, Klopoxid, Librax, Libritabs, Librium, Mesural, Multum, Novapam, Risolid, Silibrin, Sonimen and Tropium.

Aripiprazole

Aripiprazole is used to treat the symptoms of schizophrenia

Abilify

Alprazolam

Alprazolam is used to treat anxiety disorders and panic disorder

Niravam, Xanax

Amoxapine

Amoxapine is used to treat depression.

Asendin

Nortriptyline

Nortriptyline is used to treat depression

Aventyl, Pamelor

Wellbutrin

Wellbutrin is used to treat depression. Bupropion is also used to treat seasonal affective disorder

Buproprion

Trazodone

Trazodone is used to treat depression

Desyrel, Oleptro

Venlafaxine

Venlafaxine is used to treat depression.

Effexor

Amtriptyline

Amitriptyline is used to treat symptoms of depression

Elavil, Endep, Vanatrip

Lithium

Lithium is used to treat and prevent episodes of mania (frenzied, abnormally excited mood) in people with bipolar disorder (manic-depressive disorder; a disease that causes episodes of depression, episodes of mania, and other abnormal moods).

Eskolith, Lithobid

Maprotiline

Maprotiline is used to treat depression, bipolar disorder (manic depressive disorder; a disease that causes episodes of depression, episodes of mania, and other abnormal moods), and anxiety.

Ludiomil

Isocarboxazid

Isocarboxazid is used to treat depression in people who have not been helped by other antidepressants

Marplan

Phenelzine

Phenelzine is used to treat depression in people who have not been helped by other medications

Nardil

Serzone

Nefazodone is used to treat depression.

Nefazodone

Desipramine

Desipramine is used to treat depression.

Norpramin, Pertofrane)

Tranylcypromine

Tranylcypromine is used to treat depression in people who have not been helped by other medications.

Parnate

Paroxetine

Paroxetine tablets are used to treat depression, panic disorder and social anxiety disorder

Paxil, Pexeva

Fluoxetine

Fluoxetine is used to treat depression, obsessive-compulsive disorder, some eating disorders, and panic attacks

Prozac, Sarafem, Fontex

Sertraline

Sertraline is used to treat depression, obsessive-compulsive disorder, panic attacks, posttraumatic stress disorder, and social anxiety disorder

Zoloft

Doxepin

Doxepin is used to treat depression and anxiety.

Sinequan, Adapin, Silenor

Imipramine

Imipramine tablets and capsules are used to treat depression

Tofranil

Protriptyline

Protriptyline is used to treat depression.

Vivactil

Flurazepam

Flurazepam is used to treat insomnia

Dalmane

Quazepam

Quazepam is used to treat insomnia

Doral, Dormalin

Estazolam

Estazolam is used for the short-term treatment of insomnia

ProSom

Temazepam

Temazepam is used on a short-term basis to treat insomnia

Restoril

Triazolam

Triazolam is used on a short-term basis to treat insomnia

Halcion

Zolpidem

Zolpidem is used to treat insomnia

Ambien, Edular, Intermezzo, Zolpimist


 


 


 


 


 


 


 


 


 


 

Tuesday, October 9, 2012

Are you an advocate for someone living in a nursing home?


Are you an advocate for someone living in a nursing home? Are you a medical power of attorney for someone living in a nursing home? If so, please read this. You cannot advocate well for someone until you are well informed about standards of care. Of course this is true whether the nursing home is licensed or unlicensed, as is the case with many Sisters who receive skilled nursing care at "home."

Did you know that across our country almost one of every four nursing home residents is on an antipsychotic medication? In the majority of cases, these drugs are prescribed for elder residents who are living with dementia. These antipsychotic drugs given to persons living with dementia are being prescribed "off label." This means that the drug, approved for a particular use (psychosis, depression, etc) is being used for another purpose: to eliminate "problem behaviors."

All too often in retirement settings, persons living with dementia are seen as "having behavior problems, difficult, non-compliant, hostile, aggressive" and on and on all because staff is not trained to understand that all behavior is meaningful, and that the "problem" is not with the resident, but with the staff not yet able to understand the message or need the resident is attempting to convey. Such understanding takes time and a genuine knowledge of the resident. Thus the call for consistent assignment of those providing care.

The quick answer to "problems" in too many nursing homes is use of antipsychotic medications which, among other things, can so sedate a resident that the "problem" seems to be taken care of. Of course there are so many negative outcomes from such abusive use of powerful drugs. There are negative outcomes to every system in the body in addition to the side effects of these powerful drugs. I encourage you to Google the name of any drug below, for example, and learn its side effects.

Several years ago the Federal Drug Administration (FDA) issued a Black Box Warning in the case of several antipsychotic drugs when they are used off label for older adults with dementia. Those drugs include the following: Tinclude Compazine (prochlorperazine), Haldol (haloperidol), Loxitane (loxapine), Mellaril (thioridazine), Moban (molindrone), Navane (thithixene), Orap (pimozide), Prolixin (fluphenazine), Stelazine (trifluoperazine), Thorazine (chlorpromazine), and Trilafon (perphenazine).

Newer drugs that continue to carry the black-box warning include Abilify, Clozaril, FazaClo, Geodon, Invega, Risperdal, Seroquel, Zyprexa, and Symbyax. Source of information (accessed Oct. 9, 2012): http://www.cms.gov/Medicare/Provider-Enrollment-and-Certification/CertificationandComplianc/Downloads/AntipsychoticMedicationQM.pdf
The Center for Medicare and Medicaid Services (CMS) reports that information covering March through December of 2011 reveal that the national average among nursing home residents who received at least one antipsychotic was 23.9%. CMS has begun an initiative to reduce this usage rate by December 31, 2012.

To emphasize the importance of correcting the abuse of overprescribing antipsychotics for nursing residents living with dementia, CMS has added this topic as one of its Quality Measures (QM). These Quality Measures are found on the CMS Nursing Home Compare website for consumers to do precisely that --- compare nursing homes based on certain quality measures. This measure will be show for nursing home inspection reports made beginning in July, 2012.
(Go to http://www.medicare.gov/NursingHomeCompare/)
As an advocate, ask questions if a doctor or nurse suggests that an antipsychotic drug is advised. What questions should you ask:
  1. For what medical issue is this drug being prescribed?
    If the 'medical issue' is really what they call a 'behavior' such as agitation, restlessness, anxiety, etc. be very, very wary. This is the very abuse CMS is addressing in their new initiative to reduce the use of antipsychotics.
2.    Are there alternative ways to treat this medical issue?
3.    What are the benefits of this medicine?
4.    What are the risks of taking this medicine? (What are the side effects?)
5.    How long will the treatment last? (How long will the person be on this medicine?)
Only when you have all this information are you qualified to weight all the facts and then to give informed consent for the treatment to proceed, or informed refusal for that treatment too proceed. The resident, and you, on behalf of that resident if s/he cannot speak for him/herself, has the right to choose or to refuse treatment.

 


 


 


 

Monday, October 8, 2012

More than just cosmetic: the link between lack of dentures and dementia

When I first started working in the field of long-term care, I was hired as an ombudsman in Charleston, WV, not because of any special expertise in the field of long-term care, but because of my mother. I experienced such frustrations and helplessness in the institutional, task-oriented environment of the first nursing home she was in. Luckily, I found a much better nursing home, a not-for-profit home sponsored by the Episcopal Church. My brother and sisters were happy with the change too. My mother lived there for a year before her death, three years before I became an ombudsman. I hadn't needed to bring issues to the attention of the administrator of the director of nurses at Bishop Davies, but I did wonder where one went when there were problems, and solutions were not to be found within the nursing home itself. As a previous community organizer, I thought there must be something that could be done with and for families when they were companioning one of their own in a nursing home. And so I landed in Charleston, West Virginia!

My first task was to become familiar with the federal and state regulations so that I could advocate for nursing home residents, or for their family members should they ask me to look into a particular concern. One of the regulations that always remained sort of in the forefront of them all was the responsibility of the nursing home to replace – at their expense -- a resident's dentures should they become lost. I learned that staff should be trained to shake out dinner napkins before throwing them into the laundry receptacle, as well as to check a resident's dinner tray before discarding everything, unexamined, as trash.

Not having one's dentures does change one's appearance, and it is a matter of the acknowledgement of the resident's dignity – also covered in the regs – to see that the resident is wearing his or her dentures (unless he or she chooses not to). I've always wondered how someone really eats well without dentures. This morning my wondering was grounded in a report that shows a strong link between a lack of dentures (or lack of chewing) and a higher risk for dementia. Several studies demonstrate "an association between not having teeth and loss of cognitive function and a higher risk of dementia."

The report of this research goes onto say that one reason for this correlation between lack of chewing and risk for dementia may be that when chewing is difficult because of lack of teeth or dentures, there is less blood flow to the brain.

Source for this information: Medical News Today. http://www.medicalnewstoday.com/releases/251176.php

Wednesday, August 22, 2012

When Are Antipsychotic Medications Necessary?


The issue addressed in this article from the journal, Caring for theAges, carries important information in two areas of interest to anyone serving elders in a retirement setting: 1) the appropriate place of antipsychotic medications for elders who have no diagnosis of a mental disorder and 2) the role of  the family member, the medical power or attorney or the "decision maker" if the resident is not capable of making her own decisions. I will refer to these individuals by one common term, "advocate."

The issue of excessive, inappropriate prescribing of antipsychotic drugs -- in violation of state and federal regulations -- for persons living with dementia in nursing homes has been mainstream news for more than two years now. Luxenberg states clearly and simply what the State and Federal guidelines are in this regard.

The author goes on to state the standard of care when he names all those engaged with the resident in assuring appropriate planning and implementation of treatment for elders iu a nursing home. He says: the "prescriber", the facility (sic) and the family work together and communicate with one another in setting care goals. Gone are the days when "the doctor ordered" suffices to stifle all questions. Gone are the days when family members are viewed as intruders rather than the strongest allies in achieving the best outcomes for the resident physically, mentally and psychosocially.

Acknowledging the role of these advocates, Luxenberg poses four questions that the resident, or the person acting on her behalf should ask the physician when medications are prescribed.  Note: this article applies to antipsychotic medications, but the same questions should be asked and answered to the satisfaction of the resident or advocate for any medication or plan of treatment. If these conditions are not satisfied, "informed consent" for treatment has not been provided. No one of us, resident of a nursing home or not, should ever submit to treatment (medication, diet, surgery, therapy, psychological counseling) without giving our informed consent. Answers to the four questions posed will provide sufficient information to provide informed consent.

For advocates ( including medical power of attorney)  of nursing home residents who cannot speak for themselves, the responsibility the advocates bear in this role is to seek adequate information about any proposed plan of care so that he or she, the advocate, can give informed consent for the suggested course, or can deny that treatment according to the wishes of the resident as put forward in his or her advance directives.

Here is the article in its entirety

When Are Antipsychotic Medications Necessary?
In this first of a two-part series on dementia-related behaviors, Dr. Jay Luxenberg, chief medical officer at On Lok Lifeways in San Francisco, talks about antipsychotic medications (Caring for the Ages. August, 2012.  Vol. 13, No. 8.  Page 18)

Antipsychotic medications are Food and Drug Administration (FDA) approved and used mostly for psychotic illnesses such as schizophrenia and bipo¬lar disorder. While none of these drugs has been formally approved by the FDA to treat dementia-related behaviors, they sometimes can be helpful for this purpose. By talking with your physician, you can learn more about when these drugs can help and when other treatments are better choices.

Antipsychotic medications are Food and Drug Administration (FDA) approved and used mostly for psychotic illnesses such as schizophrenia and bipolar disorder. While none of these drugs has been formally approved by the FDA to treat dementia-related behaviors, they sometimes can be helpful for this purpose. By talking with your physician, you can learn more about when these drugs can help and when other treatments are better choices.

Federal nursing home regulations state that antipsychotics should be used for dementia patients only when the behaviors pose a risk to self or others or symptoms are bad enough to cause great and prolonged distress for the person or seriously hurt his or her ability to function. The regulations also say that these drugs can’t be used for behaviors that don’t put the person or others in danger or at risk of physical injury. These include wandering, crying out or yelling, poor self-care, memory problems, mild anxiety, insomnia, and nervousness.

In general, antipsychotics should only be used after trying other means of managing the problem behavior, only in the lowest dose needed, and only for the shortest possible time. The physician will work with the resident and his or her family, as well as facility caregivers and staff, to figure out what is causing the problem behavior and what nondrug treatments might help. When it is decided that an antipsychotic may be needed, risks, benefits, and treatment options should be discussed with the resident and his or her family to be sure they understand them (except in some emergency situations).

The prescriber and facility staff also will work with the resident and family to set care goals. For example, if the drugs are used to help a man who is delusional and is terrified of people he sees under his bed, the care goal might be to get his delusions under control so that he can relax, sleep well, and have a better quality of life. Facility staff will work with the physician to track the person’s progress and to watch for possible adverse drug reactions or other drug-related problems.

4 Questions to Ask Your Physician:
• What are the pros and cons of this medication in this situation?
• What if I don’t want antipsychotic drugs to be used? What are some drug and nondrug options?
• How long will this medication be used?
• How do we decide treatment/care goals?

4 What You Can Do:
• Make sure the physician and facility staff know as much as possible about your or your family member’s personality, background, likes and dislikes, favorite things, fears and phobias, hobbies, habits, and so on.
• Let the physician know if you or your family member has a history of mental illness.

For More Information:
• Antipsychotics in the Elderly: www.amda. com/consumers/antipsychotics.cfm



Tuesday, August 14, 2012

What's Wrong with this Picture?

One of my e-subscriptions is to a quarterly newsletter published by the Missouri Department of Health and Human Services. In their current issue, there is an article with the title, “Missouri Nursing Homes Have Happy Clients, MU Researchers Say”. I have been unable to successfully access the URL listed for the entire article, so I can’t critique the research as such. But so many red flags waved brazenly as I read the article. But my first response when I read the title of the article was WHAT?!!
The whole system of traditional long-term care is sick, dysfunctional and “lethal to both resident and staff” (quote is from Steve Shields, culture change leader). Those deficits are reflected in the newsletter article.

1. Who of us wants to be seen or to be considered a “client” if we are living in a nursing home? Do any of us consider those with whom we live “clients”?
2. The survey may well have been valid and reliable for what it tested, but consider these facts:

a. Residents and family members are usually extremely uninformed about the minimum standards of care in a nursing home. So if the resident sits at the table for 45 minutes before a meal is served, does she or the family even know to complain? If the resident is awakened each morning and prepared for bed each evening at the convenience of the staff, rather than at the time she chooses, does she know her rights are being violated? I could go on and on.

b. For the most part, family members can sense the good will among caregivers. Perhaps that is why they and the resident think life can’t be any better in a nursing home. That’s where hopelessness seeps in.

c. I can’t think of a single family member who would say, “I intentionally put my mom in a third-rate nursing home.” Rather, we so often hear, “Mom’s nursing home is the best one in town.”

d. Jude Rabig, Ph.D. did a fascinating study that I regret has not received more recognition. Rabig interviewed residents of a “good”, traditional nursing home about their perception of their quality of life. The residents rated the nursing home highly. This nursing home undertook new construction, providing the same number of beds but with the architectural environment of households. (Household model, public space and private space – person-directed – transformative culture change – global workers – etc.). Six months after these same residents had moved into the household nursing home, Rabig interviewed them again about their quality of life. It is not surprising that they rated their quality of life as very high. It is quite revealing, however, that from their new home (not homelike, folks, HOME!) they looked back on their life in the “good” traditional nursing home as a very negative experience. “Incarceration” was one term used to describe life in a “good” nursing home before culture change.

So for 90% of Missourians to say that things are good, may well reflect that there is no concept that life can be better in a nursing home. (Oh, how I’d love to talk to the 10% dissident population! Perhaps they are the dreamers who won’t accept the overhead call system, the restraint alarms going off constantly, the deadened “activity” schedule, the uncertainty of never knowing who your caregiver will be today.)

3. Roughly 95 – 97% of the nursing homes in the United States are still run by a schedule that reflects task-first, person-wherever-she-fits-in philosophy. This reality, as horrendous as it is, does not exist because caregivers are selfish or unfeeling. It exists because this is the “system” in which they were trained. It is this lethal system that is responsible for the extremely high turnover in nursing homes, especially among direct-care staff.

One of the researchers is quoted in the article: “Nursing home administrators have worked diligently throughout the past decade to improve the quality of care delivered to residents and to make care settings more homelike.” Undoubtedly, that is true. But two points:

1. As long as the work is to improve a system that is dysfunctional and lethal to all who are touched by it, the energy is misplaced. The system must be turned on its head! Everything must be seen through eyes focused on person-directed values. Every practice and policy must be evaluated in light of the analysis of, ‘how do we do this at home?’

2. The touchstone of life in a nursing home is NOT the care. I wish I could remember the source of this statement that I read during the past week: “How is it that even when the care is superb, nobody wants to go to a nursing home?” Of course clinical standards must be met. But it must be provided through the prism of person-first, not task-first.

The touchstone of life in a nursing home is honoring the individual, being there in service. There’s a world of difference between “caring for” and being “in service”. How do most of us respond if someone says, “I’m going to take care of you.” We don’t want to be taken care of. If we need services, we want those services provided in a dependable, compassionate and competent manner. But “taking care of” reflects a lot of things that are the topic of another post on this blog.

To read the entire article, visit: http://munews.missouri.edu/expert-comment

Wednesday, May 23, 2012

UNTIE THE ELDERLY AND DISENGAGE THAT ALARM


In the mid 1980s, a movement began mandating that caregivers “UNTIE THE ELDERLY”. The movement grew, and with the passage of the 1987 Nursing Home Reform Act, the use of physical restraints decreased. Before this movement, it was not uncommon to see any number of nursing home residents restrained in their wheelchairs during the day and in their beds at night.

I remember seeing my first grade teacher as a nursing home resident tied to her bed and also having her bed rails up. That’s called “double restraints.”

A woman obviously happy about being restrained. Picture provided by manufacturer

My own mother was restrained in a nursing home. I remember being shocked when I first saw her in that vest covering the entire front of her upper body. The vest ended in narrow strips of cloth that were tied in the back of her wheelchair. My mother’s response to my question of “why” was a resigned, hopeless shake of her head. The nurse told me it was “doctor’s orders” for her own safety. In those days I did not know better so I didn’t question “the doctor” or the nurse. I know better now and as Maya Angelou says: “We did the best we could. When we knew better, we did better.”








My mother's vest was the style shown in the figure below -- an older style -- than shown here.

Later in rural West Virginia, Ruby, a middle-aged adult child called me in the ombudsman’s office in a sense of panic. Her mother in a local nursing home had called her earlier that morning saying, “Ruby, they’ve got me tied like a dog.”

Some long-known facts about restraints:

Every system in the body is negatively affected through the imposed, prolonged immobility.

The psychological effects of being restrained are obvious to any observer who would put him/herself in the restrained person’s place.

Studies have shown that caregivers relate less frequently to residents who are restrained than to residents not restrained. Restraints, then, mean further isolation

And here’s the kicker: RESTRAINTS DON'TLESSEN INJURIES OR FALLS.

From a recent study: “Despite unambiguous legal regulation and evidence of a lack of effectiveness and safety, physical restraints remain frequently administered in nursing homes, with a recent survey reporting physical restraint rates of more than 20% for U.S. nursing homes, according to background information in the study, which appears in the May 23/30 issue of the Journal of the American Medical Association

One doesn’t see Posey Vests much anymore, though belts and “lap buddies” and things of that nature are too prevalent. The popular restraint used today is the position alarm. They don’t reduce injuries or falls; they don’t keep residents more safe; they have all the negative side effects of any physical restraint -- and then some.

The call today is not to untie our elderly, but to DISENGAGE THAT ALARM!! Tied up, hooked up, the end results are the same.










Tuesday, May 22, 2012

Transformative Culture Change proves once again that it facilitates happier, healthier outcomes

Fortunately, research continues, fortunately, around Alzheimer’s Disease: cause, cure, and preventative measures. The Chicago Tribune published an article in today’s paper entitled, ““Having Purpose In Life Helps Fight Alzheimer's, Study Finds”

In a nutshell, the research done by the prestigious Rush University Medical Center concludes that persons who have a purpose in life are better protected from health problems, including Alzheimer’s. Persons living with dementia who have purpose in life also maintain a higher cognitive function over time than others living with dementia.
The article includes the researchers’ definition of purpose in life: “the tendency to be intentional, to engage in behaviors that one wants to engage in and thinks are important”

Those behaviors or activities will vary greatly from individual to individual. One may find setting the table an aesthetic, pragmatic and enjoyable task. Another may look forward to feeding and petting the community cat, feeding the fish, walking the dog, caring for favorite potted plants, finishing a special cross stitch, peeling the potatoes for dinner, deciding what the menu for dinner will be, engaging in an evening game of dominos, watching major league baseball on TV,or listening to classical music. It may be in letter writing, or social calls to one’s neighbor, whether that is across the street or across the hall. For all, it is the ability to make choices and to act upon those choices.

The implications for life in retirement and for life in retirement settings is boldly clear. When individuals maintain control over as many choices as possible in their daily life, their life is made better and their brain health is strengthened. When individuals living in an institution continue to engage in their habitual routines, their chosen interests, their accustomed relationships, their life is made better and their brain health is strengthened.

These values stated above are at the core of transformative culture change. As consumers, or consumers-to-be, we should be demanding that this person-directed living be a given mode of operation in any long-term care setting we visit.

For those providing aging services, there is a moral obligation to provide the environment, programs and services that will provide the best practicable results. The amazingly good news is that this approach enhances the bottom line! All this also creates a workplace environment that is humane and healthy with a resulting decrease in employee turnover.

The brief article referenced in this post may be accessed at:

http://www.chicagotribune.com/health/ct-x-alzheimers-purpose-in-life-20120523,0,6856063.story

Thursday, April 19, 2012

“Henry is restored to himself!”

NPR had an amazing segment on All Things Considered yesterday, April 18th. The online version includes a six minute video demonstrating the power of music for people living with Alzheimer’s disease. I recommend listening to the segment and watching the video. In the video, a nursing home resident is “awakened”’ by music. An observer made the comment that because of music, “Henry is restored to himself.”

Henry, who is featured in this short video, is seen sitting “inert”, restrained, in a wheelchair. He lives in an “Alzheimer’s Unit” of a nursing home. Henry is depressed and non-responsive. Henry’s non-responsiveness reflects a moving into one’s own world, seeking relief from the barren, impersonal institutional environment that one lives in.
As you watch the video, note the environment Henry has lived in for ten years. You see people in wheelchairs lined up along the side of a hallway. Two women placed, one in front of the other, in total solitude in a depersonalized institutional environment. You see lines of people sitting in wheelchairs in a section of a large room, totally unengaged and uninvolved. You will see what is referred to as a “slumper”. This is an all-too-familiar sight in institutional nursing homes: an elder literally slumped in his/her wheelchair, many times with his/her head bent at a 90 degree angle.

Is it any wonder that people “check out” and become slumpers in such barren, impersonal environments? Is it any wonder that absenteeism and staff turnover in such institutions is incredibly high? To quote Steve Shields, these institutional environments are “lethal” to the spirit of residents and of staff. One’s living environment can easily and does lead to depression and withdrawal. There are multiple consequences for such individuals physically, socially and psychologically.

The Picker Institute has, commendably, funded the “Music and Memory” project which will undoubtedly enhance the quality of life for countless nursing home residents. Fortunately, Henry is one of them. If Dan Cohen, Project Director, had not come into Henry’s nursing home, would that institution has ever known that Henry loved music? Luckily, the staff did gain this important information – after Henry had been their resident for ten years!

The good news for nursing home residents today is the requirement for licensed nursing homes to complete a recently revised comprehensive assessment for each resident. That assessment is referred to as MDS 3.0 (Minimum Data Set [of information] version 3.0). This instrument is an excellent tool for getting to really know the resident. All care and services in the nursing home should then flow from that assessment. If Henry were just moving into the nursing home now, under the requirements of MDS 3.0, his daughter and other family members would be interviewed in order to learn much about Henry’s likes, habits, hobbies, preferences, strengths, abilities, needs, etc. Chelly could have told the nursing home staff what she says in the video: Dad “was fun-loving, every occasion he would come out with a song . . . .He was always into music” How sad that Henry had to wait ten years before this vital part of his life and personality was known to the staff and acknowledged by appropriate services.

What about persons who live in unlicensed nursing homes? Many sisters, brothers and priests live in their own convent or seminary headquarters and receive nursing home care there, legally, and without the requirement to be licensed.

There is no obligation – from a legal standpoint – for such centers to utilize the MDS 3.0. However, the staff leadership in these unlicensed communities should look into the advantages of completing an MDS on every brother, sister or priest in their care. There is no better tool available to assure that the staff knows – really knows – the resident.

For those of us who are not (yet) living in a nursing home, it behooves us to look to those we love who are, to those sisters or brothers whom we have known and with whom we have shared community and ministry for decades. It behooves us to advocate for them by making sure the staff does know each individual resident – as an individual – so that care and services appropriately build on that person’s habits, abilities, hobbies, strengths, preferences, habits and needs.

Staff persons who want to do the best they can for each resident will welcome this added information. Staff, in completing the MDS 3.0, will actively seek information from family members and friends, seeing these individuals as strong allies in their service to their residents..

Friday, February 17, 2012

Keeping our elder safe --- at what cost?

We really want to “take care of” those elders in our life who are important to us. Those elders may well be our parents, or may be elder members of our religious congregation. The response of “wanting to take care of” comes from a sincere “caring about” the elder(s) in our life.

Too often this well-intentioned mindset is tainted with the ageism that is so embedded in our society that we are totally unconscious of it; we don’t recognize it. Two examples of this come to mind immediately. In one case, a widow in her early 80s lives in a rural area but drives the short distance into the small adjacent town as needed and desired. Recently her vehicle of many years became unusable. Her only child chooses not to help his mother shop for another vehicle because he worries about her driving. Now this woman has had no accidents, no fender-benders or traffic violations. She uses good judgment about when and where to drive. However, her adult child worries about her mother. “Something might happen.”

A second example is of an elder Sister who wanted to make arrangements to spend Easter with her family who lived some 70 miles from her motherhouse. The Sister appointed to act as “superior”/family member” suggested to the Sister that she not make this trip. “Sister, you know you fall sometimes. I’m afraid if you make that visit you may fall while you are there.” The Sister, of course, didn’t visit her family.

Dr. Judah Ronch tells us that such actions result in “surplus safety.” In the name of caring for an elder because we care about them, we prohibit them from taking risks that are inherent in life. When all risks are negated, there is no quality of life. Every day every one of us take risks – a flight from one part of the country to another – driving a car – and on and on. We take risks because we judge the benefdits to outweigh the risks.

When elders are prohibited from taking similar risks because we want to keep them safe, usually ageism, exhibited as paternalism is involved. A valid question to ask when one is tempted to prohibit an elder’s action in order to keep him/her safe is this: “Would I be inclined to make this same decision for a person who is thirty years younger?” If the answer is no, examine whether a paternalistic/maternalistic (read patronizing) mindset is what drives our decision.

For more information,Google “surplus safety” and “Judah Ronch”