Personal Alarms: Another Form of Restraint and Oppression Among the Frail and Elderly? You Decide.

By Rhonda Rotterman, Program Director for the Institute for Person-Centered Care

How would you feel if each time you moved or transferred from one area to another you heard a siren?  How would you feel if at every attempt to move or transfer you were repeatedly told to “sit down”, “wait a minute”, or asked, “… what do you need? “or, “where are you going?”  Elders who reside in communal living environments and pose a risk of falls or have fallen experience this lifestyle every day.

Under F 222, a federal regulation that is entitled Restraints, there are identifiers for what constitutes a restraint and what alternatives facilities might implement in place of this device.  A restraint is defined as any device attached or adjacent to one’s body that an individual cannot remove easily which restricts movement or normal access to one’s body. Consequences of these devices are listed as: potential for decline in physical functioning (e.g. ability to ambulate) and muscle condition; contractures; increased incidence of infections and development of pressure ulcers due to limited mobility; delirium; agitation and incontinence. It is also outlined that residents may face loss of autonomy, dignity and self-respect, and may show symptoms of withdrawal, depression, or reduced social contact. In effect restraint use can reduce independence, functional capacity, and quality of life.

If we look at and evaluate what happens to individuals who wear personal alarms, you may readily identify the similarities between the consequences of restraint use and those of a motion detection device.  Ironically, facilities frequently use these devices instead of restraints to prevent falls, but one might argue that these alarms actually epitomize the definition of a restraint by virtue of what they inhibit; independent movement.  These devices restrict the mobility of the person that wears them in that to avoid hearing the loud siren of the sensor, they become statues. It is indeed modern day conditioning at its finest, but at what cost?

Why are we using these alarms then? If we cross-reference the federal tag F 323 Accidents, this regulation outlines that the facility has an obligation to balance protecting the resident’s right to make choices and the facility’s responsibility to comply with the regulation to maintain an environment free of hazards. The facility has an obligation to ensure that each resident receives adequate supervision and assistive devices to prevent accidents from occurring and or re-occurring. With that being said, we can clearly see why personal alarms have become a standard of practice in the plan to prevent falls and the re-occurrence of falls.  There is much more to an unplanned change in planes however (my savvy definition of a fall).

When a fall occurs, a root cause analysis must always be conducted to determine the reason(s) for the incident and it’s best to start with basic human needs. Is the person experiencing pain/have they been in the same position for too long, do they need to use the bathroom, are they hungry/thirsty, cold/warm, tired or need to lie down, etc…? Next we assess spiritual needs: are they lonely, bored, desire comfort? What do we know about this person, their hobbies, interests, customary routines?  What upsets them and conversely what calms them down? Does your facility have permanent team assignments creating an environment that fosters relationship building so staff can truly get to know those they care for? Is it too noisy and they are trying to retreat into a quieter environment? Are they new to your facility and everything/everyone is foreign? Do they have dementia and the way in which staff interacts with them is setting them off? Is it an isolated incident and merely what we all say when we fall, it was merely an accident?

How would you feel if folks came rushing to your side after you fell and assisted you up after making sure you were ok, dusted you off, sat you in a chair and then when they wouldn’t take the time to determine why you fell, they alarmed you creating a world of more noise, fear and immobility?  Have we merely traded one type of restraint for another? Let’s be honest, we know that personal alarms do not prevent a fall, they alert us when a fall has already happened, or I have seen many residents who use the alarms as a personal call light, and so they set them off when they need something. This creates what I like to refer to as the “car alarm syndrome”, whereby people just begin to ignore the alarm.

In conclusion, personal alarms do not work for the purposes they are intended. They add to an already excessively noisy environment, they create the same consequences that restraints do and actually fit the definition of a restraint by forcing limited, at-will mobility.

Stay tuned, with the person-centered care movement, the eradication of personal alarms may very well be next on the list of regulatory modifications as it relates to autonomy, personhood, dignity, choice and home like environments.

For more information about the Institute, please visit our website at:


July 30, 2013. Culture Change, Eldercare, Long-Term Care, Nursing Homes, Person-Centered Care. 2 comments.

Will Smart Leadership Be Enough in Healthcare?

 by Diane L. Dixon, EdD

Smart Leadership

Healthcare leaders today have to be smart to deal with all of the challenges they are facing.   It is fortunate that there are so many smart leaders in the field.  With the ever growing demands, sharp thinking and intellect on many levels are required.  The confluence of complex and complicated issues impacting health care delivery is compounded by continuous change that at times borders on chaotic upheaval.  So this raises an important question—Will smart leadership be enough to address all of this along with the emergent challenges of now and the future?  So far, smart healthcare leaders have not been able to solve some of the most vexing “wicked problems”.  According to Keith Grint in Leadership (2010), wicked problems are complex and intractable that cannot be solved decisively by simple linear means because there is no clear relationship between cause and effect.  There are multiple interrelated causes and effects which call for a different way of thinking and leading beyond being just smart.

From Smart to Wise

In their recently released book, From Smart to Wise, Prasad Kaipa and Navi Radjou share a new perspective on leadership smartness and the need for wise leaders in increasingly complex organization contexts.  These authors talk about the pitfalls of smart leadership which they categorize broadly as two types, functional and business.  Functional smart leaders tend to do very well in one field or function and become technical experts in what they know and like best such as medical technology, clinical research, or a medical specialty.  They can fix short-term problems and get things done.  The authors suggest that these leaders are operating in the ‘blue zone’. On the other hand, business smart leaders are more prone to be big picture entrepreneurial thinkers that can articulate a long-term vision, see emerging trends, and quickly capitalize on innovative ideas.  These leaders are operating primarily in the ‘red zone’.  There is no doubt that both types of smart can produce results, but when leaders are driven by either blue or red zone thinking and actions, they risk becoming blind to seeing the whole picture and interrelationships.  When this happens functional or business smart leaders get locked into singular mindsets that can cause them to deal with complex issues from a narrow perspective. 

In healthcare there are numerous complex problems on many levels making it imperative for leaders to continuously see how the interrelationships and inter-dependencies affect the whole system.  For this reason smart leadership alone is not enough and wise leadership is more essential than ever.

Wise Leadership

 The book defines wise leadership as, “leveraging smartness for the greater good by balancing action with reflection and introspection” rather than just relying on skills and strengths in service to goals that may or not be best for the whole organization or system.  According to Kaipa and Nadjou, wisdom is rooted in ethical behavior, shared values, and the higher purpose.  It is wisdom that provides the centeredness and ground which enables leaders to make wise choices about how to use their smartness to make the best decisions for the whole keeping the noble purpose in mind.  Wise leaders are better able to see the big picture and understand the network of interrelationships that are the essence of complex problems.  This capability and capacity gives healthcare leaders a better chance to adapt and manage the multiple issues they are facing.   As you reflect on the meaning of wise leadership, here’s a question for you to ponder —- Are you a wise leader?   You can assess your wise leadership by going to:

Becoming a Wise Leader

How do you tap into your wisdom and leverage your smartness at the same time? Kaipa and Radjou would suggest that you do not have to give up your smartness but rather gain a broader perspective that would enable you to discern which type of smart leadership to use in service to the higher purpose of healthcare in an ethical and suitable manner.  In their book they offer six interconnected practices to help you develop wise leadership:

·         Shift your perspective: Are you connected to your noble purpose?

·         Be aware of your action orientation: Are you acting authentically and appropriately?

·         Gain role clarity: Can you lead from any position?

·         Clarify your decision logic: Do you decide with discernment?

·         Develop flexible fortitude: Do you know when to hold and when to fold?

·         Discover drivers of your motivation: Do you act with enlightened self-interest?

Each chapter provides a practical guide for reflection and exploration of these questions and more.  What is here just skims the surface of the useful lessons offered in this book.

Leading with More Wisdom in Healthcare

I believe that leading with more wisdom in healthcare has potential benefits for all of us since everyone in our society is impacted by accessible quality, cost-effective care delivery systems.   The higher purpose of healthcare has a better opportunity to be achieved by individual and collective wise leaders that work together for the greater good. 

May 30, 2013. Assisted Living, Culture Change, Eldercare, Long-Term Care, Nursing Homes, Person-Centered Care. Leave a comment.

Creating A Meaningful Existence

By Barbara Speedling, Quality of Life Specialist

If you are going to create a meaningful experience for someone, you have to start by figuring out what makes them tick – what is it they find meaningful in their life and why?  It may seem overwhelming to start with such a broad view, but it’s the only logical place to start – at the heart of the matter.

What makes life worth living?  The answer to that question will be different for everyone.  Some will tell you that their family is who they live for while others might say they live for their careers.  Some may evaluate the worth of their life by how much money they have, others by how much excitement they can experience and still others will judge their life’s worth by what they have done to improve life for the next generation.

So, if you are going to help make a life meaningful and worth living, you have to look deep, beyond the obvious and, in some cases, struggle to identify what matters.  Once you do however the rest, as they say, is easy.

One important rule I like to follow is to interview staff and review the medical record after I’ve met the individual I’ve been asked to assess.  I find interviews are far more productive when I take the person at face value and make my own assessment on ability and capacity based on the interview.  Without preconceived ideas about mood and behavior, without knowing great details of why the staff finds the resident’s mood and behavior a challenge, I am able to be completely objective.

Too often, staff dismisses what a resident has to say about what is causing a particular mood or behavior because they either do not take the time to listen or because they misunderstand the message.  Conditions like dementia, aphasia and brain injury can complicate the manner in which the resident expresses his/her thoughts and feelings. Unless the listener is sensitive to the complexity of the communication the opportunity to identify triggers is lost or significantly compromised.

For example, the resident who is sitting in the dayroom has had a stroke and is now unable to speak begins to cry when she hears a song on the radio she used to love to sing.  Unaware of her connection to the song, staff does not understand that it was the music that made her cry and attempt to leave the area.  Staff prevents her from leaving the area for safety reasons and she reacts by striking out at the staff member.

Since they don’t understand the trigger staff is likely to say that her crying is just something she does.  Her striking out is also misunderstood, causing her to be labeled a “behavior”.

It has been my experience that a good many episodes of challenging mood and behavior begin with a lack of satisfaction at some level.  Not being allowed to get up and walk if you want to; not being able to go swimming every morning; being ignored when asking a question or requesting assistance; not being able to get in your car and drive to Dunkin’ Donuts for your own French vanilla coffee; or having nothing meaningful to do for hours on end every day for the rest of your life.

Begin with the obvious.  Improve your assessment skills.  Change your focus.  Learn to listen.  Find out what really matters to this person and find a way to satisfy them.  It may take a little ingenuity, but there is a way to get to the heart of the matter.

The most important question:  Age, illness and other challenges aside, if you had the chance today to do the one thing you absolutely love to do, what would it be?

Second most important question:  Why do you love it?  What does doing (whatever it is) do for you?

 Once you have the answers to these questions – keeping in mind the answers may sometimes come through family or friends for residents unable to talk with you – you can begin to explore ways to help the person find greater satisfaction.  Some examples:

  • FactsMiddle-aged woman, brain injured, comatose, vent dependent:  known to collect butterflies, loved the smell of lilacs in the spring, enjoyed music by the Beatles.
    • Activity intervention:  butterfly mural painted on the ceiling tiles over the resident’s bed; aroma of fresh lilacs used in room; Beatles music on as scheduled (not to be played continuously and variety is maintained).
  • Facts:  93 y/o man with moderate dementia:  He says that he would go fishing on his boat, that he loves being on the water and the smell of the sea.  He says he feels free and peaceful when he’s fishing, especially if he goes out alone.  His family fills in the details of where he fished and about his boat because these are details he no longer remembers.
    • Activity interventions:  Create a fisherman’s environment in his room with photographs of his boat, prize fish, with family on fishing trips or pictures of the ocean and his favorite fishing spots.
      • Develop an activity in which he can share his fishing experiences with other residents who may also enjoy fishing; support his ability by helping to arrange photographs and other memorabilia he may use during individual activity visits.
      • Develop a weekly ritual where you review fishing conditions in the area.  Give him the opportunity to reminisce about trips where weather became a problem or how he learned to read the weather charts.  Use some navigational tools and maps in conversation, helping him to remember what these things are and giving him the opportunity to “use” them and show you what they are used for.
      • Create a wall display in the dayroom or in a corridor to acquaint the staff and other residents to his fishing hobby and what it means to him and about him as a person.  Make sure he knows you have recognized him in this way and make a big deal out of unveiling the display.  Doing so will help him remember who he is.
  • Facts78 y/o alert, oriented woman who was admitted for short term rehab, but was unable to return home due to lack of ambulation/ADL support: owned a successful real estate firm until two years ago when she sold the business and retired; is known to be smart, strong, persuasive and aggressive in getting what she wants; loves all things cultured – the ballet, the opera, the annual fundraising gala for Lincoln Center.  Says that she loves being in the city, love the “pulse” of New York.  Expresses frustration over being “pinned down” as she perceives it.  Sees herself as intellectually superior to her peers.
    • Activity interventions:  create a “city” atmosphere in her room with posters and artifacts that will give it that urban feel.  Make sure there is a bookcase for her favorite Opera scores, novels and Playbill collections.  Make a space for her civic awards for philanthropy and for support of the Mayor’s Council on the Arts.
      • Assist her in finding avenues to continuing her civic involvement.  Disability and residency in a long term care facility should not prevent participation in community events that the resident finds pleasure in.  As long as the resident is capable of traveling outside of the facility there is the opportunity to continue membership and participation in most all pre-admission activities.
      • Work with local arts organizations to host meetings and events at the facility.  This would allow the resident to take a more active role in the planning and hosting of events that are meaningful, inspire anticipation and excitement and fill the resident’s long day with the kind of activity she would have done were she at home.
      • Organize a group of residents, staff and families who enjoy the opera or the ballet, or who would be interested in starting a book club.  There is no rule that says activity must be attended by residents alone.  Given the personality and background of some residents, mingling with staff and families would be more satisfying than with peers who are not able to engage in conversation on the same intellectual level.

Understanding who someone is from this perspective will help you and the interdisciplinary care team look more deeply at what matters.  Good medical and custodial care does not a quality life make without meaning.  Person-centered care requires that you think differently about life and living, differently about what matters, what challenges, what satisfies and what makes life worth living.

So, what do you love to do and why?

April 11, 2013. Tags: , , , . Culture Change, Long-Term Care, Nursing Homes, Person-Centered Care. 2 comments.

Medicare Agrees to Provide Better Access to Nursing Home, Home Health Care and Outpatient Therapy Services

By Anthony Szczygiel, J.D., Professor, University at Buffalo School of Law

 Editor’s Note: Person-centered care has had a positive effect on Medicare regulations across the board in recent years. This continues to be the trend now that the federal government has taken into consideration maintenance therapy services, in both home and skilled environments, to help individuals maintain their level of functioning, especially as it relates to those with chronic, debilitating diseases and comorbidities.

Medicare is formally rejecting the “improvement standard” that has blocked many members from getting needed therapy or nursing services.  To settle a lawsuit, the federal agency has clarified its policy on “skilled care.”  The updated policy defines skilled care as that which can only be performed safely and effectively by, or under the supervision of, a qualified therapist or nurse.  In the case of a therapist, the covered services can include a maintenance therapy program.

The Settlement Agreement in Jimmo v. Sibelius is effective now.   No longer is it a good reason to terminate therapy, or refuse to start services, because the individual has “plateaued” or the services were for “maintenance.” Rather than asking whether the care will help the individual to improve, the key question is whether the individual’s condition requires the qualified therapist or a registered nurse to be involved in their care.  This means that Medicare will cover skilled services needed to maintain the individual’s current condition or to prevent or slow further decline.

The skilled services are those provided by either a qualified therapist or a registered nurse (RN).  They apply to home health, skilled nursing facility and outpatient therapy settings.

The plaintiffs said that in many cases providers denied these services by labeling the person’s condition as “stable”, “not improving”, “maintenance” or “has reached maximum potential”   The result was twofold:

1) the member no longer got skilled services that would help them; and

2) without the skilled services, Medicare no longer helps to pay for nursing home care, or home health care.

The clarified standards can help anyone on Medicare, whether on traditional Parts A and B or in a Medicare Advantage Plan.  Almost all individuals over the age of 65 are Medicare members.  Also, a large number of younger disabled individuals are enrolled in Medicare.

The plaintiffs said that the “improvement standard” especially hurt patients with chronic conditions such as Multiple Sclerosis, Alzheimer’s disease, Parkinson’s disease and paralysis.

Medicare will not cover services when the member or unskilled caregivers can provide all that is needed.  For example, when a maintenance program does not require the skills of a therapist because it could safely and effectively be done by the patient or with the help of non-therapists, such services will not be covered.

The Agreement does not change the scope of Medicare benefits for nursing homes or home health care.  Medicare can cover up to 100 days in a nursing home, after a three-day hospital stay.  Plaintiffs said many nursing homes improperly cut off members well before the 100 days were used.  For example, therapy would be stopped because of a “lack of improvement.”  The clarified standards may allow more individuals to make full use of this Medicare benefit.  Therapy services provided after the 100 days may be covered by Medicare, but not the full room and board.

There is no day limit or annual cap for therapy services provided through a Certified Home Health Agency (CHHA).  However, many CHHAs limit their case load to short term cases, with therapy programs that only last two to four weeks.  Once the CHHA ends the therapy, the member also loses the home health aide services included in the Medicare home care benefit.  The clarified standards may allow more members access to the home care benefit, and the home care benefit may continue for a longer time.

The Center for Medicare Advocacy is the lead law firm in this national class action, Jimmo v. Sibelius.  Their website links to the court documents and other helpful materials.


The Center believes that this settlement will not increase the cost of the Medicare program, and in fact may provide cost savings.

The skilled maintenance nursing and therapy that is at the heart of the Settlement is usually low-cost, low-tech care that will often prevent the individual from declining further and requiring more intense, more expensive care.  In addition to being the right and legal thing to do, covering services such as those included in the Settlement Agreement may actually be more cost-effective than failing to provide these services.

In an October 24, 2012 editorial, “A Humane Medicare Rule Change,”, the New York Times recognized the proposed Jimmo settlement as reversing an “irrational and unfair approach to medical services.” The Times also noted that significant cost savings could result from covering necessary services to maintain an individual’s condition. As The Times recognized, when people receive medically necessary nursing and therapy services that enable them to maintain their functioning or slow their decline, many are able to stay home and avoid expensive hospitalization and nursing home care.

The U.B. Institute for Person-Centered Care will be providing two live presentations by Mr. Szczgiel on:  Covering the Northtowns: April 12, 2013 Time: 2-3:30pm
Covering the Southtowns: April 26, 2013 Time: 2-3:30pm. Please visit the web for more details

February 22, 2013. Tags: , , , , , , . Long-Term Care, Nursing Homes, Person-Centered Care. 1 comment.

“Caring Well for Residents with Mental Illness” – Part Three

By Barbara Speedling, Quality of Life Specialist, Director of Quality of Life Service for Healthcare Compliance Group, LLC

Editor’s Note: This is the last post of a three-part blog.

Two of the many pitfalls care teams face is a lack of education on mental illness and management strategies, and appropriate and timely communication between members of the clinical team. The NIH study found that Certified Nursing Assistants (CNAs) are the caregivers most likely to experience behavioral challenges, yet have the least amount of education and training on this topic.

Caring well for residents with mental illness begins with a solid knowledge base of diagnoses and symptoms. Understanding how bipolar disorder manifests and the symptoms one is likely to experience would have helped the Administrator respond to Jessie in more effective way.

The housekeeper needs to understand that the resident diagnosed with Obsessive Compulsive Disorder (OCD) will likely become upset when he/she starts insisting that the resident throw things away. The Dietitian needs to understand that the resident diagnosed with an eating disorder and major depression will likely not accept his/her recommendations for improved nutrition. The CNA who is attempting ADL care for the resident diagnosed with paranoid schizophrenia and dementia needs to understand the importance of explaining what he/she is about to do before rushing through the task.

While most nursing homes work with psychiatry and psychology, as well as the interdisciplinary team on managing resident mood and behavior, the coordination of efforts is often lacking. For example, topics addressed in psychotherapy sessions can often help the team to understand the triggers to certain moods. Residents often discuss the things that upset them and, with the therapist’s help, can identify the things they think may reduce the impact of these triggers. Developing a successful plan of care requires understanding, communication, the ability to develop clear and specific person-centered goals and interventions, and the monitoring necessary to see that the plan is implemented and maintained. Consistency among the team in applying the interventions will be paramount to achieving the goals for improved mood and behavior.

Consider the following points in assessing your facility’s readiness to care well for residents with mental illness:

1. Is the PASRR process understood by all concerned and in compliance with all Federal and State PASRR regulations?
2. Does staff receive comprehensive education and training in mental illness and the more complicated needs of residents diagnosed with mental illness that now also suffer dementia?
3. Are care plans person-centered and specific with regard to behavioral triggers and interventions?
4. Is staff skilled in applying behavioral interventions and modification techniques, such as contracting?
5. Is the care of this population consistent and coordinated among members of the clinical team?

As the numbers of younger, mentally ill residents entering the nursing home continue to grow, so will the need to better manage complex psychosocial needs. Similarly, increased numbers of aging residents dually diagnosed with mental illness and dementia will present greater challenges to daily caregiving.

Caring well for this population requires education and skill in creating environments and routines that will reduce the likelihood of extreme emotion and challenging behavior. More than medical intervention, residents with mental illness need psychosocial intervention. Developing programs and services designed to support psychosocial well-being and ensuring those services are coordinated and consistent will help your team to successfully meet the needs of residents with mental illness.

Begin by ensuring your staff has the education and resources to address the many challenges associated with mental illness and dementia. Educational resources can be found on the National Institute of Mental Health website and on the Alzheimer’s Association website Follow that with the development of standardized systems for assessment, care planning, coordination of services, and a strong quality monitoring process to ensure these systems are maintained.

Helping your staff to better understand the needs and challenges of mental illness will benefit both the caregiver and the resident. Reducing the stress often experienced in the caregiving relationship will not only improve interactions, but will begin the emotional healing these residents need to achieve a true quality of life.

April 30, 2012. Tags: , , . Culture Change, Eldercare, Long-Term Care, Person-Centered Care. Leave a comment.

“Caring Well for Residents with Mental Illness” – Part Two

By Barbara Speedling, Quality of Life Specialist, Director of Quality of Life Service for Healthcare Compliance Group, LLC

Editor’s Note: This is the second of a three-part blog.

The Administrator’s approach to Jessie might have been appropriate for someone without a long-standing mental illness.  An illness that robs the person of control of their extreme emotions, that causes anxiety hard for others to understand, and that if not managed properly by knowledgeable caregivers will result in ongoing distress and “behavior” for Jessie.

What might have been more successful was to recognize and respond to her mania firmly, but with the understanding that she would need help to calm down.  He could have offered Jessie a glass of water and asked her to sit in the outer office for five minutes until he was through.  He then could have further calmed her by lowering his own voice, minimizing any distraction in the environment, and listening and responding to her concerns.  He could have concluded by calling the social worker in and developing a solution that included regular appointments with the social worker for emotional support.  Lastly, he could have contacted the Recreation Director to develop a daily activity plan for Jessie.  Diversion, particularly activities that are productive and promote self-esteem are often successful in minimizing episodes of extreme emotion.

The NIH article discusses the meager education afforded nursing home staff in managing mental illness.  Dementia has long been a focus of staff education and training in the general realm of behavior management, but mental illness rarely gets the same attention.  For the vast majority of nursing home residents with mental illness who now have also been diagnosed with dementia, a lack of understanding about the impact of their underlying mental illness will make meetingtheir needs in their now demented state a bigger challenge.

The recommendations offered by the authors of a study on the quality of psychosocial services in nursing homes include greater scrutiny of how facilities are meeting the needs of this population.  In their conclusion they assert that “the limited number of psychosocial caredeficiencies cited is cause for concern as it reflects a lack of attention to an important dimension of resident care. OBRA 1987 requires facilities to provide social services in order to help residents attain or maintain “. . .the highest practicable physical, mental and psychosocial well-being.”[i]

The Federal government introduced the PASRR (originally entitled PASARR – Preadmission Screening and Annual Resident Review) in 1989.  The Preadmission Screening and Resident Review is a two-phase screening and assessment process designed to identify and ensure delivery of appropriate services and placements for people with disabilities.  Compliance with PASRR regulations require the facility to develop procedures for hiring, training and coordinating clinical teams for onsite evaluations and other psychosocial support activities.

The PASRR process was revised in 2009 based on the findings of a study conducted by the Office of the Inspector General (OIG) in 2007 into the quality of care for younger, mentally ill residents of nursing homes.  The study found that barely a third of residents identified as requiring mental health services (Level II recommendations) were actually receiving those services in the nursing home.  Evidence of consideration of community placements over the nursing home was also lacking.[ii]

In tandem with a settlement reached by New York State of a Federal class action suit challenging placement of mentally ill patients in nursing homes, the PASRR process underwent further revision in 2011.[iii]Level II assessment forms now prompt evaluators to consider community-based placements. Over the next three years, residents diagnosed with mental illness that could function in a less restrictive setting should be discharged to the community.

These changes are important for two reasons: 1) they require the facility to increase scrutiny of admission applications to ensure the appropriate Level I PASRR Screen has been completed and, where applicable, Level II recommendations forwarded prior to admitting a resident with mental illness or mental retardation, and 2) an increase in community placements will require nursing homes to improve staff education and training in the care of dependent residents with mental illness/mental retardation, particularly those that now also have dementia.

Review of deficiency citations in the areas of abuse prevention, quality of life, and mental and psychosocial well-being suggest that nursing homes continue to struggle with management of residents with mental illness. The more common challenges include managing antisocial behavior, preventing altercations between residents, addressing sexuality, and affording these residents the personal attention and guidance they often need to function at their best.

[i]Zhang, Gammonley, Paek, Frahm, “Facility Service Environments, Staffing, and Psychosocial Care in Nursing Homes”, Centers for Medicare and Medicaid Services, 2008,


[iii]Dunhan, Charles, “New York State Settles Federal Lawsuit Challenging Placement of Mentally Ill Patients in Nursing Homes”, The Health Law Sidebar, 2011,

©Barbara Speedling 2012

April 30, 2012. Tags: , , , , . Culture Change, Long-Term Care, Person-Centered Care. Leave a comment.

“Caring Well for Residents with Mental Illness” – Part One

By Barbara Speedling, Quality of Life Specialist, Director of Quality of Life Service for Healthcare Compliance Group, LLC

Editor’s Note: This is the first of a three-part blog.

Jessie is a woman in her early 60’s with a diagnosis of Bipolar Disorder.  She has lived in various nursing homes since being discharged from one of the state psychiatric hospitals where she’d been a patient since her mid-20’s. She is currently receiving Zyprexia and Zoloft for her depression and delusions.

Jessie bursts into the administrator’s office, panting, faced flushed, “I need to talk to you right now, Mister.  Pleaasee!  My cousin was supposed to buy me a new dress and I haven’t gotten it yet and she doesn’t answer the phone when I call and I only have two dimes and you need quarters to use the pay phone.  Mister!  Pleaaassseee!  I have to talk to you now!”

Administrator:  “Jessie, I can’t talk to you right now, I’m with someone.”

Jessie, panting harder, fidgets with her clothes, quickly running her fingers through her hair, “Pleaassse, Mister, pleaaaassseee!  I have to….”

Administrator: “Jessie, I’m with someone now.  I will talk to you later.  Did you see the social worker?”

Jessie:  “She doesn’t talk to me.  When I go to see her she tells me she’s busy and she doesn’t let me in the office they close the door and I call to her and she says, “not now” and mister, pleaaaasssee!  Can’t you call my cousin and ask her when she is going to send me my new dress?  I really want it and I don’t have any nice dresses and nobody ever buys me dresses and…..” she begins to cry, cupping her hands, a last whimpering, “pleaasseee?”

Administrator:  “As soon as I’m finished, I will ask the social worker to talk with you.  Why don’t you go to the activity program in the main dining room until she calls you?”

Jessie gives him a long, sad look, then turns and leaves, defeated, muttering, “She won’t call me she never wants to talk to me you don’t like me either she won’t call me……”

The next time we see Jessie she is standing outside the social worker’s office loudly recounting her experience in the administrator’s office, “I just wanted him to talk to my cousin but he didn’t want to talk to me.  Nobody helps me (crying loudly), I don’t have any friends here, and I hate it here!  Ohhhh, pleaasseeee, somebody, call my cousin, pleaasseeee!”

The social worker and several other staff respond to her crying and offer brief comfort, “What’s wrong?  Shhhhh…..calm down.  What happened?”  As Jessie starts to tell her story and explain her sorrow, the staff attempts to quiet her which only incites her more.  She begins yelling about how no one listens, how they all dislike her, how others get more attention than she does, and then she begins to cry uncontrollably.

This now becomes a “behavioral” event.  The Doctor will be called and likely order a psychiatric consult.  The staff will spend valuable time documenting and reporting on this event.  Jessie will be a focus for several days as they watch for signs and symptoms of more behavior.  This may even involve the staff in visual monitoring and documentation of Jessie’s whereabouts and activity every half hour, or one-on-one supervision until they’re sure the behavior has passed.

If they cannot prevent this behavior from recurring, or if it gets worse over time, they will look to find a “more appropriate environment” for Jessie.  They will not consider that it might be their own ignorance of her illness and the way the symptoms of her illness manifest that causes her to behave in the way she does.  They will not consider that their lack of appropriate response to her symptoms has fueled these “behaviors.”

The numbers of residents diagnosed with mental illness living in nursing homes continues to grow.  According to an article published by the National Institutes of Health in 2010, over the past decade, the proportion of new nursing home admissions with mental illness other than dementia, including major depression and serious mental illness, such as schizophrenia and other psychotic disorders, has overtaken the proportion with dementia only.[i]

[i] Grabowski, Aschbrenner, Rome and Bartels, “Quality of Mental Health Care for Nursing Home Residents:  A Literature Review”, National Institutes for Health, 2010,

April 10, 2012. Tags: , , , , , , . Assisted Living, Culture Change, Long-Term Care, Nursing Homes, Person-Centered Care. 1 comment.

Is Death Contagious?

By Leslie Pedtke, BA, LNHA, Administrator at Aviston Countryside Manor

There is a man that lives in our home that I can talk to about anything. He is my “go to guy.” Bill (his real name – he loves the attention). About a year ago, he and I were chatting and I was seeking the usual laughter our conversations brought me. This particular day, Bill’s neighbor was dying and Bill knew it. I kept trying to change the subject away from the obvious. Bill asked me, “He isn’t going to see tomorrow is he?” I didn’t know what to say. How do I answer that? It was an awkward moment for me. I answered, “No, Bill he probably isn’t.” There I said it. Silence.

In the previous few weeks, Bill had lost two neighbors, this would be his third. “I’m worried I’m going to be next,” he said to me. “What?!” I chuckled, uncomfortably. “Why would you think that? Do you think death is contagious?” I asked. He answered, “What if it is?”

What if it is? That conversation I had with Bill has stuck with me. I did a terrible job validating his feelings that day. I wanted to protect him. He didn’t want to be protected. I don’t want to think about the day Bill will no longer be my “go to guy.” Bill was thinking about it. He was worried.

My 24 hours spent living in the nursing home provided me unique experiences, but one in particular made me think about that conversation I had with Bill a year earlier.

My neighbor died the night I was living in the nursing home.

I heard his daughter begin to sob and I knew what must have just happened. I lay there frozen for a minute. As a resident of a nursing home – I didn’t know what to do. It was a role I had never been in.

Is death contagious? The question Bill asked ran through my head. I couldn’t help but wonder what everyone else living in our neighborhood was feeling or thinking. I got out of my bed and went to console his daughter. I was the only “resident” that did. Not everyone was asleep yet. We had just said our goodnights a few minutes before. No one else came out. The neighborhood was silent with the exception of my neighbor’s room.

Were people afraid? Or did they just feel helpless? I felt a little of both. It’s difficult to know what to do or what to say. I made myself available. I offered to make phone calls.  I met the priest at the front door (in my pajamas) and I prayed. Doing all of these things made me feel less afraid and they gave me a purpose. I wasn’t just lying there wondering if I was going to be next.

That’s how Bill felt a year ago. I didn’t take him seriously. I will from now on.


That is the basic mantra we have all learned by moving into the nursing home. I want to laugh when I am happy and I want to cry when I am sad. I want to feel needed and I want you to meet my needs. I want to be respected for the life I have lived and for the life I continue to lead. Show me love and you will feel my love in return.

March 6, 2012. Tags: , , , , , , , , . Culture Change, Long-Term Care, Nursing Homes, Person-Centered Care. 6 comments.

Choice vs. Consent

By Kathy McCollett, Organizational Culture Change Specialist, PHI

Let me start by saying that there is a huge difference between consenting to do something and choosing to do something. When health care professionals use the phrase “informed consent,” it generally means that after receiving information and advice, the nursing home resident is agreeing to do what the healthcare professionalwould like them to do. In all fairness to the person requesting the consent, their request is likely based on years of experience and perhaps evidence-based practices. The requestor may feel that his or her perspective on the issue is as solid as the rock of Gibraltar, and therefore,if the resident does not agree, there is now a problem that needs to be fixed. The resident, and sometimes their family members, has taken a stance that feels oppositional, even adversarial, and that does not comport with “industry standards.”

Initially, the healthcare professional may feel that the resident doesn’t have enough information to make an agreeable decision. So, logically, more information is provided. Sometimes these conversations allow for collaborative problem-solving and all parties come to an amicable agreement. But sometimes, the resident–or their family–simply does not agree or chooses not to consent to a particular treatment, procedure, or protocol. If the healthcare worker has done a reasonable job of explaining why the doctor, nurse or nursing home holds their particular point of view, then it is documented in the resident’s chart that the resident has been “educated” in relation to the issue under discussion.

But that is not usually the end of the matter. In an effort to get the resident to ultimately consent, the healthcare professional may be acting on a number of assumptions. They may be thinking that if the resident doesn’t agree, or consent, he or she isn’t thinking clearly. If the resident is vehement about it, it could be concluded that the individual is irrational, or perhaps having cognitive difficulties. The healthcare professional may think, “Maybe someone else could talk to the resident, someone the individual would listen to, someone who could get the resident to agree.” All of this is usually with the best of intentions.

For instance, a caregiver who is assigned to care for a woman who has had cardiac surgery comes in to ask the resident to come to the dining room for breakfast. The resident explains that she does not want to go to the dining room, but would like to have a small breakfast in bed. The caregiver will bring her breakfast from the choices associated with her particular diagnosis or from a tray prepared by the dietary department. The caregiver must be sure to bring food that follows any therapeutic diet and associated restrictions—including thickened liquids–that have been designated by the physician.

When the caregiver brings the tray to the resident, she sees scrambled eggs, limp toast, ground sausage, a bowl of oatmeal, orange juice and coffee.  The individual says that she just wants a piece of toast with butter and jam and some coffee. The caregiver tells her that she needs to eat so that she has the nutrition she’ll need “to get better, so she can go home.” The resident feels that no one is listening to her. She says that what everyone wants for her is taking precedence over what she wants for herself.

The resident, however, has the right to choose what she wants for breakfast as well as the portion size. By not eating what has been recommended, the nursing staff may indicate that the resident is refusing her breakfast when, in fact, she is eating what she would normally have if she were at home. At the  interdisciplinary team meeting, there may be a discussion about her unwillingness to comply, or consent to what the healthcare professionals deem as essential to her care plan. It is entirely possible that there could be a recommendation that she have a psychological evaluation to determine if she is depressed. This may be perfectly appropriate, but it may be a reaction to the fact that the resident doesn’t want to do what the healthcare professional wants her to do.

These situations exist many times over in nursing homes across America, not only around mealtimes, but with everything from administering medications to attending activities. Decisions are made for the individual being admitted prior to their coming, while they are there, and even for the time after they go home. This writer is not advocating for relinquishing or diminishing the responsibility of the healthcare professionals to inform, educate, encourage, and assess the needs and goals of the residents in any way. The care and support needed and wanted by residents in nursing homes should be determined through a collaborative process between the home and the resident and their family members (when this is appropriate). This process should result in a resident-directed approach to each person’s stay. Ultimately, it is the resident or the person designated to make decisions for them, who has the final choice in any matter. Hopefully, that will be a fully informed choice.

January 6, 2012. Tags: , , , , , . Culture Change, Eldercare, Long-Term Care, Person-Centered Care, Uncategorized. 2 comments.

Day 20: Who’s the Boss? Providing Person-Centered Care and Caring

By Bonnie Kantor-Burman, Sc.D., Director, Ohio Department of Aging

Editor’s Note: This blog was originally posted November 30 to the Family Caregiver Alliance’s “30 Days of Caregiving” blog 

My mother was cared for by a wonderful woman, Darlene, during the time she needed long-term care and caring. One day, I asked Darlene if my mother could go somewhere with me—I don’t remember where, but it really doesn’t matter. What matters is the quizzical and rather piercing look I received from Darlene. Thinking that maybe she didn’t hear me clearly, I repeated my query. This time she responded not only with words, but with her arms flailing wildly for emphasis. “Why you are asking me?” she replied. “Your mother is the boss, not me.” And then, with a finger pointing my way she continued, “For heaven’s sake, ask her, not me.” Point well-taken indeed, and clearly never forgotten.

More and more states continue to “rebalance” their provision of long term care, focusing their efforts squarely on moving some of the care from more nursing homes to home- and community-based settings. This, of course, is not only more cost effective, but is what most folks tell us they want. Here in Ohio, our approach to rebalancing is multidimensional. In additional to shifting the balance back to providing more care in the home, we are also focusing on the message Darlene sent to me loud and clear. We are concentrating not only on where the care is delivered but also how, by whom and when. Think about it: If we are getting up on someone else’s schedule, going to bed when they decide and eating the food they think best for us at the hour they determine, are we really “home?” Or are we living in a house that used to be our home? In other words, who is in charge—or to paraphrase Darlene, “Who’s the boss?” After all, aren’t we the boss in our own homes? Don’t we make our own decisions whenever possible? And don’t we have real relationships with the people there?

Care in which the person needing the support is living as normal a life as possible and making as many of her own decisions as possible (regardless of whether the care is provided by family and friends or formal care from paid caregivers) is best described as person-centered care. It is the kind of care each of us would want for ourselves and for our loved ones. While there are many different approaches to person-centered care, the core values that unite them are choice, dignity, respect and self-determination. Person-centered care always is characterized by individual choice in schedule and relationship. To achieve this, formal and informal providers adjust their care and routines to the needs of the care recipient instead of the other way around. So, instead of being reassured that, “Mom is adjusting well,” in a person-centered care situation, a daughter will hear, “We are adjusting well to your mom.”

Perhaps a former care recipient said it best when she commented, “You haven’t lived ’til you’ve gone to the bathroom on someone else’s schedule.”

I would be remiss if I didn’t add that research suggests that everyone benefits from person-centered care. Health and functional outcomes are better, costs are lower and both providers and consumers are more satisfied. Sounds like a win-win-win situation to me!

Person-centered care certainly worked for our family. My mother, “the boss,” lived for a full six years being cared for and cared about by Darlene. She lived a full six years being loved by Darlene. In her own way, she loved Darlene right back. Isn’t this the kind of care and caring we want for all of our elders? Who’s the boss in your caregiving situation?


1) Ohio Department of Aging Web site:
2) Ohio Department of Aging on Facebook
3) Ohio Department of Aging on Twitter

Day 20: Who’s the Boss? Providing Person-centered Care and Caring by By Bonnie Kantor-Burman, Director, Ohio Department of Aging is licensed under a Creative Commons Attribution-NoDerivs 3.0 Unported License.

December 12, 2011. Tags: , , , , , , , , , , , , . Culture Change, Eldercare, Long-Term Care, Nursing Homes, Person-Centered Care, Uncategorized. 1 comment.

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