The decision to place oneself or a senior loved one in a long-term care facility is often a difficult and stressful process. The tendency is to breathe a sigh of relief after the placement is made and assume all is well. Intelligent and ongoing monitoring is essential to assure ongoing top quality care.

Consumers and their families must assume part of the responsibility for ongoing monitoring. Licensing personnel are, under the best of circumstances, likely to inspect a facility only once every year or two. Consumers will be in the facilities frequently and at all hours.

This article is intended to help consumers and families plan the ways they will monitor the adequacy of care their loved ones are receiving.

Some "eye-opening " exercises

First, let's look at some of the reasons consumers and their families may "turn a blind eye" to facility performance problems. That is, feelings are often involved which may cause people, consciously or unconsciously, to avoid monitoring facilities because they really don't want to confront questions or problems. We'll also look at ways to deal with these feelings to free ourselves to do the important work of monitoring.

Not wanting to move again — It's very natural to want to avoid the difficulty and expense of finding another facility. Long term care facilities, by their very nature, are the seniors' current home, and people rarely relish relocating. Elderly adults in particular are subject to what gerontologists term "transfer trauma" and may become quite depressed, upset or disoriented when uprooted from familiar surroundings, as may some adults with mental illnesses.

First of all, maybe the situation is salvageable without moving . For example, maybe extra services can be provided by the facility or a home care or home health agency if the problem stems from escalating care needs. Or, if the problem relates to facility performance, maybe the facility
will improve once faced with the need to do so. After all, most facilities want to protect their business reputations and their licenses.

On the other hand, if moving is the best solution, the sooner this is faced the more time and energy everyone has to deal with the practical issues. There are ways to prevent or minimize transfer trauma. A well-planned move will go a long way toward reducing the stress of moving. Some ingredients are: arranging ways to become familiar with new people and surroundings (e.g., visits or photographs and brochures), attention to the need to say good-bye to friends at the old facility and to stay in touch with them; and some extra emotional support throughout and after the relocation.

Fearing to admit having made a "bad decision" — The resident or the resident ' s family may unconsciously avoid seeing problems, fearing it would reflect badly on them.

Cut yourself some slack. You made the best decision you could at the time you made it and with the information you then had. Things may have changed since then. Besides, even if it turned out to have been a bad decision, that doesn't mean you're a bad person or a neglectful family for having misjudged the situation initially.

Believing it is proper to trust the experts — Most of us want to trust the judgment of the professionals we hire, especially in areas where we don't feel we have the knowledge and information necessary to evaluate or to question what the professional is telling us. We may also feel too intimidated to question explanations that don't make sense to us. Or, we may be afraid we'll ask a question that will make us seem ignorant.

First, don't forget that residents and families also have important expertise — knowledge of the individual, family history, and emotional ties that are important ingredients in successful care. Secondly, true experts and professionals do not use their expertise in arrogant or intimidating ways. Competent long-term care professionals are eager to
establish true partnerships with residents and families, and they will explain and listen. Be on guard with any who seem to demand blind trust and unquestioned acceptance of their advice.

Fearing to seem ill mannered — Most of us have been conditioned to try to avoid conflict and to avoid being offensive. This can make us reluctant to voice concerns for fear of seeming rude or seeming to be a complainer.

Residents and their families are paying customers. There is nothing ill mannered about establishing clear communication and clear expectations. In fact, it's not really fair to expect a good business relationship to evolve if one of the parties is withholding feelings and information the other needs to do a good job. Of course, be tactful and willing to listen to explanations (not excuses). Remember that the goal is to fix the problem rather than to fix the blame — but don't ignore problems and hope they'll go away.

Fearing reprisal — A long term care resident is likely to be or to feel dependent in one or more ways, i.e., he or she came to the facility because of needs that could no longer be met living independently or with a family member. Dependency puts one at a psychological or real disadvantage when assertiveness might be in order. This can range from not wanting to ask for assistance for fear of annoying the floor staff to being afraid to report serious complaints for fear of reprisal, including forced discharge as retaliation.

Unfortunately, reprisal can be a legitimate worry. Floor staff may be poorly trained, inadequately supervised and ill suited to the work in terms of temperament and emotional stability. They may also be short-tempered because the work is demanding, stressful, poorly paid, and not even respected, as it should be in our society. If you feel fearful about reporting problems, your feelings may or may not be well founded, but you still must trust your feelings, particularly if you don't trust the facility's supervisors and managers to follow through quickly and effectively to fully protect residents.

If you feel afraid, make your complaint to an outside authority, which you can do anonymously if necessary. However, these authorities are well aware of the need to protect confidentiality and to protect complainants, so think about giving your name. Giving your name allows the investigating authority to contact you for additional information if they need to do so. In California, your first contact for anyone residing in a facility should be the Long Term Care Ombudsman. If the resident is teh victim of a crime, such as an assault or larceny, committed by facility staff or other residents, law enforcement authorities should also be informed.

Fearing involvement in litigation — When concerns arise, whether about oneself or about another resident, residents and families may not want to report because they're afraid of being drawn into litigation or being asked to bear witness in a regulatory enforcement action.

Please, don't turn aside if you see a problem . Remember that some residents may not have families monitoring their care and may not be physically or mentally able to protect their own interests. Speak to facility supervisors or managers if you are concerned about any
resident. If the response is not prompt and satisfactory, make a report to the licensing authority or some other outside agent with investigation authority. We all need to look out for one another.

Monitoring techniques

In general:

• Monitoring should occur as regularly and frequently as you can manage.
• Make your visits or your monitoring at different times and on different days. A more random pattern of visits and observations will give you a fuller and truer view of the facility's operations.
• Increase or more sharply focus your monitoring when you become aware of different observations and perceptions that concern you.
• Whenever there's a change in circumstances, that's a cue to check that care routines have been adjusted and re-established.

Some specific cues and approaches for monitoring are:

• Change in medication, special diet, or other treatment regimen. Make sure changes are entered in the facility's records and that all staff involved in carrying out the changes are notified and, if necessary, trained in new procedures.
• Apparent decreases in the resident's abilities to perform activities of daily living (e.g., bathing, dressing) or instrumental activities of daily living (e.g., managing appointments, shopping, cooking).
• Make sure the staff has noticed. Sometimes, if the change is very gradual, a visitor may notice changes that staff has overlooked. Discuss and exchange observations with staff.
• Make sure any necessary medical attention is provided and make sure the facility increases its care to compensate for the resident's reduced capacities.
• Changes in the resident's appearance, grooming, attitude, emotional outlook, and activity level. These may signal changes in the resident's needs or in the quality of care being provided by the facility. Listen carefully and sensitively to what the resident is saying, and also to what is not being said. Do the same with a few other residents. After all, a problem in quality of care is likely to spread to others sooner or later.
• Changes in the facility's appearance, general maintenance, response time, or staff attitudes and morale. These are also indicators of whether the facility is progressing or regressing.
• Failure to achieve expected results of treatments or service plans within the estimated time frame. If goals are not being met, it may signal a need to review the facility's performance, the resident's current status, the resident's most recent assessment and care plan, or a need to adjust the services in the care plan.
• Changes in facility personnel, including direct care staff, supervisory and managerial staff. Staff turnover is a problem in many long-term care facilities. Ask about the facility's plans for covering staff vacancies. Get to know the new staff and make sure they are familiar with the resident's and family's needs, expectations and plan of service. Try to establish a sound working partnership as soon as possible.
• Changes in facility ownership. The health care and long-term care industries are volatile markets at this time. Companies are being bought and sold at a rapid rate, as well as effecting mergers and strategic partnerships. These can also result in significant differences in a facility's services, management style, business and care-giving goals, and policies. Make sure you understand whether and how ownership changes may affect care quality, staffing, intended customer base, fees, and service contracts both short range and long range.
• Inspection reports. Licensing inspections and, when applicable, quality assurance and accreditation surveys, as well as fire and sanitation inspection reports are good indicators of whether the facility is performing adequately. Regulations sometimes require these to be posted. Good facilities will either post such reports or advise residents and relatives where they can be reviewed even if the regulations do not require posting. As you review these reports, consider whether any violations cited are serious or minor. Consider whether violations and complaints are becoming more numerous or less numerous over time. Consider whether the facility is repeating the same kinds of violations from one inspection to the next. Also determine whether it is failing to correct previous violations between inspections or according to the terms and time frames of the previous corrective action plan. Uncorrected and repeated violations are especially worrisome indicators of an unwillingness or inability to maintain compliance even after being made aware of violations. If you have questions about the implications of inspection reports or additional information to share, contact the regulatory authority.
• Resident/family council activity. Become active with the resident and/or family council. If this is not feasible, regularly review the council's minutes, newsletter, or other types of reports. Most facilities, unless they are very small, will have an active resident council, and regulations sometimes require the facility to establish or attempt to establish a council. The council is a way for residents and families to establish effective communication with the facility, e.g., to identify concerns, make suggestions, plan activities. Council members obviously have a broader base of information and observations, so monitoring a council's concerns and focus may be another indicator of how well the facility is doing. Also consider whether the facility appears to be encouraging or discouraging council involvement and whether it seems to be attentive and reasonably responsive to council's suggestions.
  
  Various support groups have been formed in many communities for families who may have members in long term care facilities, e.g., aging, developmental disabilities, Alzheimer's Disease, AIDS, cancer, stroke, etc. Contacting or working with these groups may provide an additional means to monitor the care of various facilities. These groups can help members to become more effective service monitors and advocates by providing them with specialized information about care needs for particular populations. Support groups may also become a means for members to organize their efforts, such as sharing and thereby lessening the monitoring burdens of any single family. The Internet is also a rich resource for specialized information needed to identify and monitor care needs of different populations in care.

Monitoring long-term care is an important responsibility for families, one they cannot leave to regulatory agencies alone. You can make your limited monitoring time count by learning the most effective ways to observe and communicate the needs and goals that are important to the health, safety, comfort, and well-being of your loved one and others in the facility you selected.

For information on Residential Care Facilities in the greater Placer area, call Seniors First.