I worked in the juvenile court system in Cleveland, Ohio when I was 19 years old. My first position was that of typist in the Subpoena Division. I sat among a dozen or so other women typing subpoenas on manual typewriters. It was long before computers and just on the crest of electric typewriters. We used carbon paper by the ream and had a celebration when WhiteOut® was invented.
I was later promoted to the Intake Department where I spent the day talking to various people who had an interest involving a juvenile. I would record their complaint of truancy, criminal behavior, unruliness or other types of delinquent behavior, search the juvenile files for any previous records and prepare the case for referral to the Intake Worker.
Among the complaints I received were those related to child abuse and neglect. There were many cases involving brutality, sexual assault and just plain depraved indifference. One case involved a mother whose boyfriend had thrown boiling water on her twin seven-year-old daughters. Another was the horrific story of a 14-year-old girl held captive for three days by 12 men, two women and two minors. She was raped and beaten repeatedly for fun.
A father of eight came to my office to inquire about representing himself in the pending case in Family Court. Seems he is accused of throwing his nine-year-old daughter down the stairs, fracturing her arm and ankle, forcing his three-year-old son to lie on the floor while the family dog eats food off of his little body and making his five-year-old daughter stick straight pins in the arms and legs of her 18-month-old brother when he cries. He doesn’t think the court should be able to interfere with his disciplining his children.
I listened to these stories for more than a year, wondering every day why people who don’t want children have them. I was even more curious to know how neighbors, family and friends of these dark souls could turn a blind eye to what they knew in their hearts was happening to these children.
Apathy has allowed many tragic events to occur in our world. Why wouldn’t you rush to help someone in need if you could? We’ve all heard the stories of the young woman stabbed to death on a New York City street in the 1950’s. It was later reported that dozens of people heard her screams for help and did nothing. Some later said they were afraid, others thought someone else would take care of it. Ultimately, she died because no one felt a responsibility to come to her rescue.
What kind of person ignores the suffering of another? What causes one witness to a tragedy to rush to help while another will just keep going? Does heroism only apply to extreme crisis or are there opportunities everyday, in small, sometimes almost what seem to be insignificant ways to improve the life of another?
I am exposed to both heroes and the apathetic on a daily basis. Much like those who choose to have children and plan to nurture well, there are long term caregivers who look forward to coming to the aid of another and helping them to thrive.
There are also those caregivers like the folks I met in the court system. They are the caregivers who don’t care, who come to work solely for their paycheck with little concern for the needs of the people they are there to care for.
A seasoned long-term care professional can generally identify which camp a staff member is in after a period of observation. In some ways I appreciate someone who is clearly on one side of the fence or the other to the one who preaches quality care and residents’ rights, but fails to demonstrate the kind of behavior that will truly achieve those goals.
I had the unfortunate opportunity recently to witness this kind of two-facedness in an exchange with an activity programmer in a nursing home. I was observing what was described as a music therapy program for approximately 35 residents of various ages and circumstances. They were seated haphazardly in a large room, some off to the side sitting alone, others engaged in playing cards and others were sleeping while extremely loud music blasted over the speakers.
I watched as four activity aides and volunteers walked among the disjointed crowd limply clapping out of rhythm to the loud music and virtually ignoring the residents seated around them. I asked the programmer what they were doing that was therapeutic? Did they know if the people in the room liked the music? Did they ask anyone if it was too loud? Was there some reason why residents weren’t encouraged to socialize or why the staff looked as though they were tortured to be there?
Her response was short and sweet – “it’s not my program”. I said I thought that was like a certified nursing assistant saying “that’s not my resident” when asked to provide assistance to someone. “Don’t you feel some responsibility as a senior programmer to correct what your colleagues are doing?” I asked her. She did not. She repeated that it was not her program and that she was good at what she does. Really?
Perhaps it’s just my perspective, but I remember hearing President Bill Clinton respond to a reporter who asked if he would stop working now that he is no longer in the White House. He told the reporter that it would be wrong of him not to work if he is able. He said he’d been blessed with the skills and the knowledge to make the world a better place and it would be wrong of him not to use those gifts.
In that spirit, I think it is every caregiver’s responsibility to champion for the rights of residents to be provided with a life that is worth living. Not just being maintained in good health, but really living. Eleanor Roosevelt said, “The purpose of life is to live it, to taste experience to the utmost, to reach out eagerly and without fear for newer and richer experience.”
That includes being your brother’s keeper – being interested in correcting the slight, the wrong, the lack of consideration, the apathy or the abuse. Speaking up and modeling the kind of behavior necessary to the quality care of human beings.
Apathy is at the core of what is wrong with our institutions. Add to that a good dose of me-first-and-later-for-everyone-else thinking and you have a hotbed of disorganization, unhappiness, discomfort, stress and sometimes enough dysfunction to sink the ship.
In a recent education session with a group of nursing home caregivers on the subject of quality of life in which I talk about the benefits of an in depth psychosocial assessment that leads to a truly personalized care plan, I was shouted down by several staff for being unrealistic. They said they don’t have time to talk to the residents. One nurse said, “You don’t think we can talk to these people in here the way we talk to normal people out there, do you?” Enough said.
If we are to achieve a true change in the culture of long-term care we have to stop tolerating the apathy. We have to make caregivers understand that there are no more resources. We must work with what we have and the work would be so much easier if we would just understand that these people are wired the same way as you and me – they just have a few other challenges.
I don’t know about you, but I signed on to tackle those challenges. I am devoted to caring well and inspiring – sometimes shaming – others to do the same. If you do not want to care well, if your heart isn’t in it, if you can stand by and watch as others fail to do the very best they can for those in need, then you should move on.
Take a fresh look at your environment – daycare, assisted living or nursing home – over time every environment becomes familiar. So familiar that you become jaded and you stop trying to make it better. You accept whatever dysfunction as what is and turn a blind eye to the suffering of the resident that is not getting what he or she needs.
Remember when you first began your career in long-term care and a resident you’d befriended died? You felt it and you grieved the loss of your friend. After awhile, you make fewer friends, you don’t try as hard or invest as much time in getting to know the people. There is more emotional distance and less interest in swimming upstream.
So, you worry about your job, your task or your world and there is little worry left for the people in need and the integrity of the care. The simple act of stopping to say, “Hello, how are you?” and actually waiting for an answer demonstrates to the onlooker that you can talk to these people like normal people.
In a time when science is showing us that the simple offering of more intellectual stimulation – including simple conversation – may be the most effective method of staving off the dementia epidemic, encouraging more talking, more education and challenge should be the focus of our therapeutic offerings. Talking more, being more interested in the person and their history will only lead to greater understanding, tolerance and genuine, personalized care.
When was the last time you watched or had knowledge of something inappropriate and thought about speaking up, but didn’t? Next time say something. Be a hero and a champion for a quality existence. Change someone’s life. It costs nothing, but could change everything.
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: www.ubipcc.com
by Diane L. Dixon, EdD
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.
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: www.fromsmarttowise.com.
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.
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:
- Facts: Middle-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.
- 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.
- Facts: 78 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.
- 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.
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?
By Diane L. Dixon, EdD
We have been talking about coordinating care and collaborating across boundaries for as long as I have been in health care, more than 25 years. It is interesting to me with all of the recent debate over the new age of health care reform that we are still talking about collaborating across boundaries as if it is a new initiative. As so often happens in health care, new names are given for old challenges and invoke a burst of new energy and debate such as what we are experiencing with accountable care organizations (ACOs), for example. These are groups of providers that come together to provide coordinated care to defined patient populations. Needless to say, ACOs require collaboration to be effective.
What health care professionals have always known is that to provide person-centered care, you have to work together across multiple boundaries – hospitals, nursing homes, community-based care settings, nurses, physicians, departments, disciplines, etc. This is not new; we have been talking about it for years. But somehow when the day-to-day realities emerge, the silos reappear. One key question for everyone involved with providing person-centered care is: What will it take to minimize the barriers to really collaborate? What will it take to put egos, competition, blame, and power struggles aside to focus on doing what is right for the person entrusted to care? What will it take to hold the best interest of the patient, resident or client in the center of all of the variables and professionals that are involved with doing what is best for them?
I have worked with many health care providers over the years and I have not met one yet who did not care about people. What I continue to learn is that when care delivery is at its best, all who are involved are collaborating well. There is no doubt that person-centered care is very hard work in today’s complex and demanding environment. But examples of good collaboration across health care delivery boundaries are all around us. What can we learn from these positive examples? What can be done to expand and continuously improve collaboration and, ultimately, person-centered care? You have the answers.
This is not the time to be sidetracked again by the latest health care debates and politics. This is not the time to let the swirl of complex issues impacting health care delivery today overwhelm and interfere with what you know in your hearts and minds to be best for people entrusted to you. This is the time to release old mindsets and conflicts about what did not work in the past and embrace new ways for working together to provide the most effective person-centered care.
Just a few tips to remember when collaborating:
- Focus on your common purpose
- Clearly define mutual goals and accountability for outcomes
- Don’t take relationships for granted—
- Develop mutual respect and trust, communicate effectively, give/receive positive and negative feedback; manage group dynamics
- Actively listen to diverse perspectives
- View and use constructive conflict as a positive means for—
- Asking thoughtful questions
- Solving problems
- Gaining consensus on complex issues
- Act with honesty and integrity
- Use disappointment as an opportunity to learn and improve collaboration
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,” http://www.nytimes.com/2012/10/24/opinion/a-humane-medicare-rule-change.html?partner=rssnyt&emc=rss, 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
I was recently asked if I would be willing to write a blog post about the American Psychiatric Association’s plans to drop the word “dementia” from the 5th edition of their Diagnosis and Statistical Manual of Mental Disorders, due out next May. The new manual will replace “dementia” with two classifications: “minor and major neurocognitive disorders”.
This announcement has caused a good deal of advance consternation, and an article by geriatric case manager James Siberski in the latest issue of AgingWell (http://www.agingwellmag.com/archive/110612p12.shtml) highlights many of these concerns.
As you might expect, I have a lot to say on the topic. Would it surprise you to know that I am not totally opposed to the concept? It is a very complex issue, so I will try to tease out some of the nuances here. I will start by describing what I think is good about the decision, then address some of the concerns that have been raised, and some lingering concerns of my own.
The APA decision to remove the word “dementia” was a response to concerns that the term was contributing to the stigma of the condition. According to etymologists, the earliest English usage was in the early 1500s, taken from the Old French word démence, meaning “madness” or “insanity”. At that time, insanity was a concept applied broadly, centuries before cognitive disorders were understood and separated from psychiatric illnesses. (We still struggle with that separation today—see below.)
Is there stigma attached to the word “dementia” in our society? Absolutely! We see it every day, in all walks of life (though I personally have seen more stigma attached to the word “Alzheimer’s”). A lot of the concerns raised about the new terminology have been centered on the potential effects of removing a word that is in such common usage throughout society. This is the first case where my feelings are decidedly mixed.
In theory, I strongly support the word change, because I am a staunch advocate of culture change and I believe that language choices help define our worldview. This makes any argument about word familiarity less convincing in my mind. After all, the majority of people use terms like “difficult behaviors”, but I would never let that fact stop me from avoiding the term in my own speech and trying to convince others to change their language too. So if the word “dementia” truly creates stigma, we should be equally insistent on changing it as well.
I also do not necessarily buy the argument that the DSM changes will increase the workload of most clinicians. My psychiatric colleagues are quite faithful in reporting the various DSM diagnoses and axes on their consultation notes, but I don’t know many internists or other practitioners who ever bother to do that. In my practice, I described diagnostic categories like schizophrenia, bipolar disorder, etc., but I never wrote out the official classifications, nor did the people with whom I practiced. (The fact that the DSM on my own office bookshelf is the 3rd edition—released in 1980 and revised in 1987—is a testament to how often I pull it out for reference.)
Furthermore, we are required to update medical classifications all the time. New scales, diagnostic criteria, and terminology are constantly appearing in the literature. So I don’t buy the doomsday predictions of the extra work that this might create. And the directive to try and distinguish different forms of dementia is really no more than what we already do.
My last supportive comment is that this is coming out of our national psychiatric association, which to me represents a major step forward in their thinking. I have seen a lot of stigma come out of this body over the years and I applaud their bold step in addressing a major aspect of stigma head-on.
But I do have concerns. The first is that there seems to be no coordination of decisions that are made on such a large scale and affect so many stakeholders. Mr. Siberski makes the excellent point that major organizations (Alzheimer’s Association, NIA, CMS, American Neurological Association, etc.) continue to parse out and classify “dementia”, apparently totally out of the loop of what APA is doing. Why can’t these groups talk to each other about such a huge issue? If we really want to remove stigma, then such changes need to be part of a more global movement to reform our language, one that has the support of many such stakeholders. (A shining example of better collaboration is the document of new dining standards for nursing homes, which was developed in conjunction with regulators, physicians, dieticians, culture change organizations, etc., before it was released.)
I also have issues with the classification itself. The use of “major” vs. “minor” neurocognitive disorder mirrors the way the DSM has long classified different types of depression. This can be problematic, however, when there appears to be such a spectrum of ability, rather than two clearly distinct categories. It almost suggests two different disorders, and as the AgingWell critique mentions, it ignores the concept of “mild cognitive impairment”. Once again, given all the work going on with neurologists around classification of MCI versus dementia, there should be more communication and collaboration here.
Regarding the actual terminology, I am as yet undecided. “Neurocognitive disorder” is, in my mind, less stigmatizing than “dementia”, but it doesn’t exactly roll off the tongue, particularly for the general public. If we want society to move away from the stigma of the word “dementia”, we need to give them an easier term to substitute than this.
I have been slowly moving away from using the word “dementia” myself—not so easy when it’s the title of my book! I often say “cognitive disability”—I like the mindset that comes with viewing dementia as a different ability, rather than a fatal disease. I sometimes say “forgetfulness” and have friends who strongly advocate for the term. I agree it’s far less stigmatizing and helps you see the whole person, though I also understand others’ objection that these conditions represent far more than simple memory loss.
But while I struggle with better language choices, there is a word in the new DSM that bothers me a lot more than any of these: and that is the simple word another. Each description of the neurocognitive disorders contains the caveat that the symptoms must not be “attributable to another mental disorder” (my emphasis). This revives the debate of whether dementia should be considered a psychiatric disorder at all.
Just today, British advocate (and person living with “whatever-it-is”) Norm McNamara posted the question to his Facebook friends as to whether dementia should “come under the mental health banner”. The majority of respondents said “yes”, but I continue to have concerns.
I have expressed before that seeing dementia as mental illness is one of the factors that leads physicians to treat the experiences of dementia in a similar manner to psychosis. This is a huge problem, because there is no neurochemical basis for using these drugs in dementia. The delusions of schizophrenia result from up-regulated dopamine activity, whereas in dementia, dopamine levels are generally low to normal. So dopamine-blocking drugs (i.e., antipsychotics) should not be expected to provide a similar benefit—why does no one talk about this?? Furthermore, one does not have to be “psychotic” to have a different experience of her surroundings, if normal processing pathways have been altered or lost. This “mental disorder” view is a big part of why we are mired in antipsychotic drugs to begin with.
At the same time, I am not advocating for dropping this family of conditions from the DSM entirely. If someone expresses something that seems abnormal to us, our reference books should list all possible causes, whether psychiatric or neurologic.
And just to muddy the waters a bit more (as Jesse Ballenger pointed out after a recent post), seeing dementia as neurologic illness can also lead to an overmedicalized view of people, so terminology and classification are only a part of the larger problem of stigma.
Confused yet? I am! This is tough stuff, but we must do whatever we can to not make life more difficult than it needs to be for people living with dementia and their care partners. If forced to summarize all of the above musings into a set of recommendations, I would suggest the following:
1) Rather than simply coming up with their own terminology, the APA should consult with other major organizations, to try and find some consensus. Lack of common wording is ultimately more confusing to the public than any one term alone.
2) We should continue to challenge the use of the word “dementia” (which is indeed stigmatizing), but do so in the larger context of a re-vamp of much of our language around the condition, moving toward a discourse that better reflects and centers on the whole person.
3) We should continue to include this family of conditions in the DSM-5, and keep it in the section that lists neurologic, rather than primary psychiatric illnesses.
4) Both psychiatrists and neurologists need to bone up on the extensive literature around person-centered approaches to dementia, to help them continue to evolve their views, language, and approaches.
This is the beginning of a new dialogue on cognitive disabilities. Let’s keep it up!
The WordPress.com stats helper monkeys prepared a 2012 annual report for this blog.
Here’s an excerpt:
600 people reached the top of Mt. Everest in 2012. This blog got about 3,600 views in 2012. If every person who reached the top of Mt. Everest viewed this blog, it would have taken 6 years to get that many views.
By Barbara Speedling, Quality of Life Specialist
In a recent article concerning the sexual abuse of one nursing home resident by another, the failure of the staff to fully recognize the responsibility to supervise and protect residents from harm leads to a tragic outcome. Not only does the victim suffer irreparable damage, but the perpetrator suffers as well for the ignorance of the staff about dementia and issues of sexuality and sexual expression.
The issue of sexuality is often taboo in the institutional environment. Either the staff lack any understanding and consideration for the very human emotions and needs we all share, or they are uncomfortable with sexuality and would rather avoid having to address it at all. In extreme cases, staff may see themselves as the moral police, imposing their personal feelings and beliefs about sexuality on the dependent population.
When complicated by dementia, sexual expression becomes more complex. Experts tell us that the person with dementia will experience changes in their sexuality. “As the ‘control center’ for behavior and emotion, the brain determines sexual feelings, good manners and inhibitions. This means that in a person with dementia, sexual feelings can change unpredictably.”
The person with dementia may experience an increase or decrease in sexual interest, engage in uncharacteristic self-stimulation or other public displays or make sexual advances toward someone they mistake for a spouse. In each of these situations the person is without fault as his or her ability to comprehend why the behavior is inappropriate is lacking. The manner in which intervention is applied may serve to intensify agitation if not done with sensitivity for the person’s dignity and lack of understanding.
Staff often struggle to balance residents’ rights with their duty of care, and negative attitudes towards older people’s sexuality can lead to residents’ sexual expression being overlooked, ignored, or even discouraged. The criteria for establishing the capacity to consent to sexual behavior is varied and should be evaluated on an individual basis. There are different levels of capacity and the team should look at all aspects of the ability for informed consent before making a determination about the care path.
Sometimes the actions or a comment a resident may make to staff or other residents is misunderstood as sexual. What appears to be sexual may actually be an indication of something quite different, such as:
- Needing to use the toilet
- Discomfort caused by itchy or tight clothes or feeling too hot
- Boredom or frustration
- Expressing a need to be touched, or for affection
- Misunderstanding other people’s needs or behavior
- Mistaking someone for their partner
As with any mood and behavior issue, a thorough and complete investigation into the circumstances leading up to the event is essential. Without identification of the things that trigger certain reactions and feelings the team will be hard-pressed to address them successfully.
Federal regulations addressing a variety of topics under the umbrella of Abuse Prevention impact our response to issues of sexual expression generally and, specifically, with regard to residents with dementia or other diagnoses or conditions affecting their capacity to make informed decisions. Under the Abuse Prevention guidelines (F223-F226) issues of resident-to-resident abuse are addressed relative to the caregiver’s responsibility to identify the risk and develop a plan to prevent the abuse from occurring.
In F323 addressing Accidents the responsibility for supervision of residents to prevent incidents, accidents and circumstances that can lead to abuse, neglect, mistreatment or misappropriation of property is stressed. The effectiveness of the supervision will make all the difference in preventing events and maintaining a safe, quality living environment.
The first challenge to long term care facilities is improved staff education and training on the subject of human sexuality. Staff should be able to recognize these needs and plan proactively to not only protect residents from each other, but to ensure the dignity and well-being of residents is protected and maintained.
The second challenge is that of developing meaningful, satisfying activities for all residents to engage them, distract them, delight them and keep them safe. With the right activity offered in the right environment the job of protecting, supervising and caring well for all residents will be more easily achieved. True person-centered care begins with caring enough to be well-educated and well-prepared to efficiently and successfully navigate the very delicate task of caring for another human being, completely and in a manner that is satisfying for all concerned.
Barbara Speedling, Quality of Life Specialist ©2012
 Sex and Dementia, Alzheimer’s Society UK, http://www.alzheimers.org.uk/site/scripts/documents info.php?documentID=129
 Sex and Dementia; Alzheimer’s Society, UK,http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=129
By Martha Stettinius, Author of the book “Inside the Dementia Epidemic: A Daughter’s Memoir”
At age 80, my mother, Judy, is living with advanced dementia (vascular dementia and probable Alzheimer’s disease), and I’ve served as her primary caregiver for 7 years. She’s lived in my home in Upstate New York with my husband and two young children, in assisted living, a rehab center, a “memory care” facility, and a nursing home.
When Mom moved from her isolated, lakeside cottage, where she’d lived alone for 25 years, into my home, she withdrew into her room, often refusing to come out for meals. I worked outside the home, and she refused to go to an adult day program. I knew little about dementia, and I made a lot of assumptions about her capabilities and feelings. Over the years I’ve come to appreciate how my mother remains herself and “here” despite the ravages of the disease. Healing old wounds, our time together has been not a “long good-bye,” as dementia is so often called, but a “long hello.”
When Mom lived with me, I saw her withdrawal and stubbornness as extensions of her often difficult personality, not as symptoms of dementia. I tried, for example, to reason with her by explaining things over and over, and it took me some time to learn more artful ways of communicating. I reached out for help from a local Alzheimer’s caregiver support group, a county Family and Children’s Services caregiver counselor, and a psychologist who specialized in elder care issues. I read a lot of books about dementia care, and the few memoirs available at that time about dementia caregiving. But it would take several more years for me to appreciate all the ways in which my mother remained whole and capable.
After just 3 months of living with Mom it was clear that we each needed more space and independence. Mom lived comfortably for the next 2 ½ years in a nearby assisted living facility, although she spent most of her days staring at the big-screen TV, refusing to go to activities that were geared more for the “independent living” residents. Throughout my visits, her doctor appointments, and our outings for lunch, I continued to judge her behavior as the effect of her life-long personality, not as a sign of a damaged brain.
In 2007 she fell, possibly during a small stroke, fractured her pelvis, and lost some of her ability to speak clearly. She suddenly became incontinent. I visited her daily at the rehab center, and it was there that I began to see dementia differently. I live in an intentional community, and had just attended a community discussion about how we could better support our one neighbor with dementia. The group talked about many things, such as helping people with dementia feel useful and needed, and I felt inspired to try a different approach with my mother. The next day, I decided to visit Mom after work not out of my usual worry and sense of duty, but simply to sit with her, to slow down and enjoy together whatever pleasures we could find.
At a table under a tree in the courtyard, I looked into my mother’s eyes and said, “Mom, I could really use a hug.”
We held onto each other a long time. I took her hands in mine. Pausing to find the right words, Mom said, “The two of us…have come…a long way.”
I smiled and squeezed her hand. “Yes, we really have come a long way.” Was she remembering what we used to be like together, how hard we’d worked over the years to grow closer to each other? I wanted to cry when she said this. Did she really remember all those years, or was she just saying something polite that she might say to anyone she’s known a long time?
“Let’s keep going…in that…direction,” she said. She was still smiling and looking deep into my eyes.
With this, I thought she really did know what she was saying. And that’s all I had ever wanted–“to keep going in that direction.” I wanted us to grow closer, if only by annoying each other less and enjoying each other more.
“Yes, Mom, let’s do that. I’d like that.”
With the incontinence, my mother could no longer live at her assisted living facility, so I moved her to an excellent “memory care” facility. Mom would live in this memory care facility for nearly 3 years—years that seemed her happiest in a long time. Firmly in the middle stages of dementia, she joined the activities, sparked a romance with one of the men, and generally enjoyed living in the moment, no longer tortured by awareness of her disease. I appreciated more and more the gifts of her company, taking time to enjoy her instead of just rushing through my caregiving tasks. However, I still equated my mother’s jumbled language with loss of self. Part of me assumed that because she could no longer speak in long, coherent sentences, she was similarly unable to experience complex emotions or complex thought.
In 2010, when Mom could no longer feed herself and had to move into a nursing home on Medicaid, I learned from several experts in dementia that I might be underestimating my mother’s needs and abilities. At a gerontology conference I listened closely as Dr. G. Allen Power described dementia as a shift in a person’s perception of the world. People with dementia can still learn new things, he said, and there continues to be the potential for growth and enjoyment of life. I could see that potential in the way that Mom seemed to develop affection for the staff in the nursing home. I read books by Dr. Bill Thomas, Anne Davis Basting, Joanne Koenig Coste, John Zeisel, Dr. Dennis McCullough, and others, and realized for the first time that there was probably much more going on in my mother’s mind than I had thought. With that realization I felt a deep regret and sadness. Maybe I had avoided her true feelings because it would have been too painful for both of us, and I couldn’t do anything about them beyond visiting her. But I found myself wishing that I hadn’t equated her jumbled language and physical deterioration with loss of self and awareness. In 2010 I vowed to talk to my mother as I would anyone else (protecting her, of course, from anything painful). I vowed to try more non-verbal communication, using touch, gesture, and facial expressions.
Now, two years later, if I pay close enough attention to my mother as I talk to her, I almost always see an immediate response—a flick of her eyebrow, a widening of her eyes, a soft snort through her nose when she’s amused. Despite advanced dementia—despite the fact that she cannot walk, speak, or feed herself—she enjoys people, seems to recognize certain favorite staff and visitors, and shares her stunning smile. Judy is still “in there,” and though I have experienced many moments of grief and loss, I still feel her love.
Martha Stettinius is the author of the new book “Inside the Dementia Epidemic: A Daughter’s Memoir,”available at major online book retailers. She serves as a volunteer representative for New York State for the National Family Caregivers Association. For more information about the book, please visit www.insidedementia.com.