Individual preferences for activities should be honored.

What gives your life “quality”?  

If you ask ten people that question, you will get fifty different answers.  Quality of life can only be measured by the person living that life!  Look at this example: “Being out in the fresh air and sunshine” may be a popular response to the question.  But dig a little deeper, ask for examples of how they enjoy fresh air and sunshine, and you may hear: “My 3-mile fitness walk every morning;” “Watching the sunrise from my porch and hearing the birds wake up and sing;” “Lying on the beach;” “Working in my (rooftop/community/windowsill/raised bed garden;” “Watching the children play on the school playground;” or a hundred other scenarios.  Then there’s always the “rogue”, the “free spirit” who will redefine the question and respond with, “My fresh air is the cooling vesper breeze of dusk, and my sunshine is a star-spangled night sky.”  Some of these may appeal to you; others, you’d rather skip.

Quality is unique to each individual.  

No one can decide what gives another person quality of life.  This fact does not change when a person receives long-term care.  Family, caregiver, and advocate must rely on the care recipient to inform the answer to that question.  We must listen to our loved one.  Verbal and nonverbal communication is essential to discovering what defines “quality” to that person – what they say, how they respond to people and events, what draws their attention.  What makes them smile (and frown, and back away).  REMEMBER: What was once a preferred activity may not still be a preferred activity; cognitive and functional abilities and interests change over time. Advocates must be sensitive to this fact and remember to respect and honor the preferences of the person receiving care -- not their own concept of what the person wants.

Choice and control over daily activities, schedules of routine day-to-day occurrences, when to wake up, what to wear, what to eat, when to bathe, when to go to bed – these are little things we take for granted; that is, until we lose our autonomy.  But knowing the consumer as a person, observing their habits, and supporting their choices can bring quality to daily life whether the consumer is independent or must rely on assistance to accomplish their choices and goals.  Long-term care should enhance, not reduce, the recipient’s participation in their chosen daily routines and rituals, and should occur in a manner and schedule that makes sense for the individual’s daily life – not for the convenience of the care provider.

Quality of Life builds in opportunities and encouragement for each consumer to engage in meaningful and preferred activities, enjoy social interactions, have a daily routine that makes sense and brings order and familiarity to their life – especially the parts requiring the assistance of a caregiver, regardless of the care setting.  The individual’s choices, routines, preferences, and values should be built into the care planning and the care giving.

The Care Plan is Key.

The care plan should incorporate provisions such as whether the person prefers to sleep later or get up at the crack of dawn; what time of day a bath (or shower, as the person may prefer) makes sense in the individual’s daily routine; how often and when social interactions with friends take place.  The more information the care plan team has regarding what is important to the care recipient, the more appropriate the care plan will be.  Care plans should not be just a list of tasks to be completed – though many tasks may be required throughout each day to maintain health and enhance well-being.  The care plan should be a reflection of the complete individual, identifying where support and assistance are needed to accomplish the individual’s priorities, goals, and preferences for a daily life that has quality and meaning to them.

To determine if the care plan meets these criteria, ask these questions about every component of the plan: “Does this activity (whether by staff, caregiver, or care recipient) happen at a time and in a location that make sense for the person?”  “Does the activity itself make sense for this person?”  “Does the activity accomplish anything meaningful for the life of the person receiving care?” “Does this therapy help keep my loved one as strong or healthy as possible as long as possible?”

On The Other Hand...

The flip side is also a reality: that none of us, regardless of how much control we exert over our lives, can be without discomfort, or avoid all conditions and circumstances we don’t like.  That, too, remains true when a person must rely on care and support.  Expressing discontent and frustration with circumstances is a normal part of life.  When a consumer does so, the underlying reasons should be explored and a solution sought.  But often, providers jump immediately to the “right to refuse treatment” without seeking ways to make needed treatments more tolerable.  As advocates, we must demand that all reasonable efforts be made to determine the specific complaints and attempt different approaches to encourage participation in the treatments.  Smaller increments in treatment steps, positive and encouraging interactions, distracting attention while continuing the treatment – these and many more creative strategies may prove effective.  Key to success is, simply, Don’t give up!  If the person becomes adamant, avoid confrontation; back off and try again later, but don’t give up!

What is NOT Quality of Life?

Our mother's experience serves as an example of what happens when Quality of Life is NOT viewed through the eyes of the person receiving care. Through her nonverbal behaviors, our mother told us very clearly that she was not experiencing a decent quality of life after being admitted into long-term care. Obviously, the staff perceived her behavior and her experiences differently.  In no uncertain terms, our mother communicated to us that the staff did not treat her with dignity when assisting with her personal care, did not consider her preferences when engaging her in activities, or try to keep her engaged constructively. Staff responded to her efforts at communicating her dissatisfaction by physically restraining her, placing her in a wheelchair, and calming her down with medication.  From the staff’s perspective, they had bathed and dressed her, protected her from falling; and calmed her down when she became upset for no apparent reason. To be fair, they did not intentionally infringe on her quality of life.  They were doing their job, having never been trained differently.

People receiving long-term care who are experiencing any level of dementia have the right to feel comfortable in their environment. Those displaying agitation, and confusion, or lodging frequent complaints may be "hard to please," but the care plan (See Quality of Care) is intended to address these issues in meaningful ways. Digging deeper to determine what the consumer is communicating through these challenging behaviors is an essential piece of the assessment process. 

As the discussion in this section has emphasized, the word “meaningful” should be defined from the care recipient’s perspective.  In cases where the recipient cannot make their perspective known, the family can play a primary role in assuring that providers determine what is meaningful to their loved one.  

The Code of Federal Regulations is again an exemplar for our discussion. These regulations have much to say about Quality of Life, applicable to other care settings as well, summarized briefly here:

A facility must care for its residents in a manner and in an environment that promotes maintenance or enhancement of each resident’s quality of life.

The facility must not only care for but promote care for residents in a manner and in an environment that maintains or enhances each resident’s dignity and respect in full recognition of his/her individuality. Staff is to treat each person as an individual,  not as part of a group one must fit into or be labeled “unable to participate” or “uncooperative.”

The resident has the right to self-determination and participation in choosing activities, schedules, and health care consistent with his or her interests, assessments, and plans of care.

A resident has the right to participate in social, religious, and community activities that do not interfere with the rights of other residents in the facility. 

A resident has the right to reside and receive services in the facility with reasonable accommodation of individual needs and preferences, except when the health or safety of the individual or other residents would be endangered. Being understaffed is not an acceptable excuse for not providing reasonable accommodation. However, being understaffed may compromise the safety of residents

The facility must provide for an ongoing program of activities designed to meet, in accordance with the comprehensive assessment, the interests and the physical, mental, and psychosocial well-being of each resident. When the activities staff is unavailable, a substitute staff member is to conduct the scheduled activity.

The federal regulations pertain to facilities not participating in Medicare or Medicaid because they set a standard of care for the industry.  Self-paying families should know the goals of facilities they visit and seek this standard of care as essential when selecting one.  

Exception:  Abuse and neglect concerns are not discussed here.  Those concerns are more serious and should be handled according to your state’s laws of reporting.  Every facility must post those laws clearly.  See “What You Can Do” on this web site for definitions of the terms abuse, neglect, and misappropriation of property.

Source: Code of Federal Regulations, 42CFR483.10 and 483.24, Center for Medicare & Medicaid Services.