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.
- 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.
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: activities, behaviors, Person-Centered Care, quality of life. Culture Change, Long-Term Care, Nursing Homes, Person-Centered Care. .
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.
See, http://www.medicareadvocacy.org/hidden/highlight-improvement-standard.
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
http://ubipcc.com/culture.html
February 22, 2013. Tags: Center for Medicare Advocacy, Home Health Care, Jimmo v. Sibelius, Medicare, nursing home, Person-Centered Care, Therapy. Long-Term Care, Nursing Homes, Person-Centered Care. .
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 http://nimh.nih.gov/index.shtml and on the Alzheimer’s Association website http://www.alz.org. 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: Assisted Living, Barbara Speedling, Culture Change. Culture Change, Eldercare, Long-Term Care, Person-Centered Care. .
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,https://www.cms.gov/HealthCareFinancingReview/downloads/08Winterpg5.pdf
[ii]http://oig.hhs.gov/oei/reports/oei-05-05-00220.pdf
[iii]Dunhan, Charles, “New York State Settles Federal Lawsuit Challenging Placement of Mentally Ill Patients in Nursing Homes”, The Health Law Sidebar, 2011, http://healthlawsidebar.com/?p=566
April 30, 2012. Tags: Barbara Speedling, Culture Change, Eldercare, mental illness, residents. Culture Change, Long-Term Care, Person-Centered Care. .
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]
April 10, 2012. Tags: Barbara Speedling, illness, mental illness, nursing home, PCC, Person-Centered Care, quality of life. Assisted Living, Culture Change, Long-Term Care, Nursing Homes, Person-Centered Care. .
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.
LIVE LIFE WITH MEANING AND PURPOSE
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: Aviston Countryside Manor, death, dying, elder care, elders, Leslie Pedtke, life, nursing home, respect. Culture Change, Long-Term Care, Nursing Homes, Person-Centered Care. .
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: choice, consent, Culture Change, healthcare, Kathy McCollett, PHI. Culture Change, Eldercare, Long-Term Care, Person-Centered Care, Uncategorized. .
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?
Resources
1) Ohio Department of Aging Web site: www.aging.ohio.gov
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: 30 Days of Caregiving, Bonnie Kantor-Burman, care, caring, choice, community, dignity, Long-Term Care, nursing home, Ohio Department of Aging, Person-Centered Care, respect, self-determination. Culture Change, Eldercare, Long-Term Care, Nursing Homes, Person-Centered Care, Uncategorized. .
By Leslie Pedtke, BA, LNHA, Administrator at Aviston Countryside Manor
Editor’s Note: This is the second blog of a two-part series.
Nursing homes suck. Monte Coffman said this at the 2011 Illinois Pioneer Coalition Summit. I’ll have to admit. I kind of agree.
The first time I heard Dr. Bill Thomas speak and he said similar things about nursing homes I can remember feeling offended and a little ticked off.
The premise behind “Through the Looking Glass” was and is for those of us working in long term care to see how much it does suck. If we could only prevent hip fractures, strokes and especially Alzheimer’s disease maybe we wouldn’t need them. Nursing homes don’t suck. It’s needing one that sucks.
The first National Pioneer Network conference I attended I remember hearing a nurse during the opening ceremony speak about one of her resident’s saying, “I don’t care how pretty you make the bathroom, I just want to be able to use it when I need to go.” My eyes welled with tears. At that time, we had just made our bathrooms “pretty,” but I hadn’t thought about making sure no one had to wait to use it. Most of us working in long term care have no idea what it’s like to rely on someone else for our basic needs.
I moved into the nursing home for 24 hours.
Let me back up for a minute and tell you a little about myself. I am fiercly independent. Stubborn. I really love my job. I don’t do sitting around very well.
Fast forward.
I moved into the nursing home for 24 hours and as you know, I was scared. I hated to admit that. I was afraid I wouldn’t know how NOT to do “independent, stubborn, loves her job, ‘me.’
I hesitated to go to my room at first. What if it became permanent? I was out of my comfort zone. I was afraid.
I am a healthy 39 year old woman. I don’t have dementia (although I can be a little forgetful at times, like last Monday when I forgot to open the garage door before I backed my car out).
All I could think about was, “What if I had dementia and didn’t have a clue where I was compounded by these normal feelings of fear being out of my comfort zone?” I would try to get the heck out of there. And you would try and stop me. I would try to get the heck out of there. And you would try and stop me. Over and over again.
Something else I didn’t mention about myself. I used to be really introverted and when I get out of my comfort zone I become introverted once again. I became a shy person again. I stayed in my room most of the afternoon. If I were a real resident with dementia you would probably say I was depressed, not adjusting well, and an elopement risk. You would want to put me on medication.
We talk a lot about how quickly a person can become “institutionalized.” It’s true. I felt it. I fought it in my mind. It’s what scared me. Not only though do our residents become institutionalized, but so do those of us that work in long term care.
The day I moved in, I went to the activity room to play BINGO. When I returned to my room, there was an incontinent pad on my bed. It made me angry. I can independently use the bathroom. I don’t wet myself. Why would they put that on my bed?! I asked my caregiver, “Why do I have an incontinent pad on my bed?” Her response, “ummm….we put one on all the beds.” You do what?! Why?! We had an ah-ha moment together.
Do those of us that work on long term care act as institutionalized as those of us that live in long term care feel? Did we cause this? Can we stop it? Yes we can.
Matthew Lysobey, administrator of Mission View Health Center in San Luis Obispo, whom I fondly refer to as “the soap guy,” asked his staff why they thought their residents weren’t happy. One of his caregivers responded, “My life would suck if all I had to look forward to every day was thanking everyone for helping me and no one needed me anymore.” He is right. That does suck. It takes away purpose in our lives. Listen to the words being spoken in your home. How often do you hear yourself or your staff say, “It’s ok. We can do that for you. That’s why we’re here. You just relax and let us wait on you.” As fabulous as that sounds today, as busy working adults, sitting around being waited on all day is depressing.
During my 24 hour stay, I was told at least a dozen times, “I’ll do that for you.” At one point, when I was carrying my own dishes to the kitchen and a caregiver said that to me, I chided, “I want to do it myself. I have to feel like I still have purpose in this world.” She probably thought I was cranky and needed a nap or maybe she would speak to her nurse about getting me an anti-depressant because I wasn’t adjusting well.
I am making it sound like my stay was terrible. It wasn’t. I want to do it again. I will do it again.
I am thankful every day for the job that I have and the team I work with. We stand together against the use of psychotropic medication until everything else has been tried. That, along with the non-use of personal body alarms, has become part of our non negotiables.
Six of us so far have moved in for the 24 hour challenge. This isn’t a challenge to see if you can hack living in a nursing home. The challenge is to open your mind to think about better ways to care for those living in our home. What better way to do that but to live it. I did.
November 16, 2011. Tags: Assisted Living, Aviston Countryside Manor, Leslie Pedtke, nursing home, Person-Centered Care, Through the Looking Glass. Culture Change, Long-Term Care, Nursing Homes, Person-Centered Care. .
By Barbara Speedling, Quality of Life Specialist, Director of Quality of Life Service for Healthcare Compliance Group, LLC
Who can deny that music makes you feel good? For most of us, the right melody with the right rhythm sends us into a frenzy of toe-tapping, hand-clapping, hip-shaking glee! While every kind of music won’t elicit the same response from everyone who listens, exposure to music benefits every listener in a myriad of ways.
Studies at Northwestern University on the impact of music on children have shown improved vocabulary and reading skills. Moreover, the researchers have found that “musical training has a profound impact on other skills including speech and language, memory and attention, and even the ability to convey emotions vocally. [1]
For people with cognitive and memory deficits, medical research shows us that music affects the brain in ways that can promote language and understanding beyond the spoken word. New research also shows that music has a significant impact on reducing depression and agitation in people with dementia.[2]
Music does a great deal to evoke memory, with certain melodies bringing to mind pleasant memories of people and life events. People identify with the song they danced to at their wedding, or the song that was playing when they had their first kiss at the Junior Prom, or sometimes, even the song that makes them remember a broken heart.
Whatever the story, hearing the music brings the memory rushing back with vivid images of where you were and who you were with at the time. Using music in this way can be extremely comforting to people who are having trouble remembering.
Far from the creepy scenes in One Flew Over the Cuckoo’s Nest in which Nurse Ratched plays cheerful music to signal medication time, research supports the fact that music can be used to enhance recall. As such, used appropriately, music can help residents to anticipate certain aspects of the daily routine, reducing the common anxiety seen in people with memory impairment in response to their own confusion over what to do next.
The music offered in most nursing homes and assisted living environments includes piped-in music over a central sound system, radio and/or CD music in the common areas, or live entertainment in one form or another. In recent years, there has been an increase in the use of CD Walkman’s and iPods among residents, as well. While each has their place, reaping the vast benefits of music exposure requires improved planning and thinking about how to use music in the environment.
Some things to think about in assessing the impact of music on your residents include:
- Is music playing constantly in the environment causing it to become the equivalent of “background noise”? Some facilities favor music piped in over a central system. The music is generally loud enough to be heard, but not distinct enough to be compared to listening to music on one’s own. In this example, the music becomes “noise” to many and interferes with their ability to hear conversation, their own television or radio, etc.
- Have resident preferences for the type of music and favored artists been assessed comprehensively? In instances where the population is multi-cultural, who decides on the common music offered in the environment?
- Is music a passive experience or are residents engaged by staff in conversation about the music and the memories the music brings to mind? Is music used to benefit other activities designed to stimulate memories, such as journaling? Journaling can be an effective tool as a resident’s memory declines, offering staff a way to catalog “memories” for use in later conversations meant to soothe and/or comfort the resident.
- Are live musicians chosen carefully for their appeal and skill at interacting with residents? Entertainers who play badly or have little dialogue with the audience should be discouraged in favor of those who know how to elicit favorable responses by interacting and encouraging residents to participate physically as well as emotionally.
The best group programs are those that require active physical participation on the part of the resident. There is an emerging focus on rhythm or drumming as remedies for residents with motor agitation and those prone to anxiety and restlessness. Similar therapeutic effect has been shown in children with ADHD.[3]
Taking the following steps can help increase the positive impact of music on residents, particularly those with cognitive deficits and challenging behaviors:
- Promote the use of specific music at strategic times of day (i.e. just before meals) to signal a recurring daily event;
- Assess residents for the benefit of individual listening via Walkman or iPod of either preferred music or “white noise” to calm motor agitation and anxiety;
- Use strolling musicians in small group encounters as opposed to large, passive music entertainment programs. The musician interacts with the listeners, stopping to talk about the song and the memory it brings to mind;
- Promote reminiscence discussions and sing-a-longs as part of large group entertainment programs over passive listening; and
- Encourage residents who are able to perform for others by either playing an instrument or singing. Participating in the actual making of the music, such as in drumming programs, will help the resident “feel” the music more completely. In many instances, residents with dementia can continue to play an instrument they always played, even if they say they don’t know how.
Lastly, it has been my experience that the choice of music played in common areas is largely the preference of the staff. While there is the possibility that the staff and residents share the same taste in music, observation suggests this is a rare occurrence.
Staff should be educated on the impact of music on residents, positive and negative. A plan for use of music in the common areas should be developed to prevent the potential for background noise and to promote positive memory recall and enhanced communication ability in residents.
© 2011
[2] Laird Harrison, “Music Therapy May Help Dementia Patients Especially,” Caring for the Ages, Vol.12, No.7 (July 2011): 1
September 29, 2011. Tags: Assisted Living, Barbara Speedling, Culture Change, elder care, Eldercare, language, memory, music. Culture Change, Long-Term Care, Person-Centered Care. .
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