And How You Can Change It
Nursing homes vary greatly in quality, but not even the best of them can care for your loved one as you would if you were able. As for the worst of them… one can only imagine. So it is perfectly understandable that many family members of nursing home residents will be dissatisfied and unhappy. And it is usually the dissatisfied who are motivated to join the family council.
For a family council to be successful its members need to channel their feelings of dissatisfaction, anger, and frustration productively and with a mind toward constructive action. Expressing anger without focus only damages the council’s credibility and makes it easy for the administration to discount its concerns. This increases the group’s frustration, resulting in a vicious cycle of fruitless recriminations and chronic unsolved problems. Once this pattern becomes embedded in the culture of a council it is very hard to break. Therefore it is important to understand what steps the council can take to prevent it and allow the possibility of real progress.
The grievances that family members present at meetings are real, even if the administration fails to take them seriously. But what is likely to happen at a meeting of people who are upset and who have real grievances?
Emotion takes over. Overwhelmed by frustration, people feel a need to share and to voice their complaints very emphatically. This can result in the meeting becoming dominated by people talking over each other, jumping from one complaint to another without pause, and presenting demands with anger as one’s only strategy. If the strength of one’s feeling were alone capable of forcing change, this might work. But very often, those members who do not drop out will return month after month wondering why the council doesn’t accomplish anything.
Some nursing home personnel call this a “gripe session.” And they are unfazed, because gripe sessions are the easiest family councils for them to deal with. They just agree with the person complaining, move on, and that is the last one hears about it. Or they simply say “We’ll look into it” and never mention the matter again. How many of us have heard that phrase? How often was it accompanied by meaningful change?
Family members have a lot to deal with. It is not easy to be calm when your loved one is given the wrong medication, must wait for hours unchanged, must wait months for needed medical services, or is treated disrespectfully. Not all homes are guilty of the worst offenses, and many who work in nursing homes are truly dedicated to the residents’ well-being. But there are enough exceptions, coupled with lax enforcement from state health departments, to create much anger and a sense of futility in many who depend on the home to give their loved ones proper care.
Uncontrolled anger poses no challenge to an administration that needs to reform. Anger is a blunt instrument. One can strike hard with it but it still won’t cut anything. At the same time, anger is a natural human reaction when our loved one is not being treated well. “How can we avoid being angry?” is the wrong question. A better question is, “What do we do with our anger?”
We do not just lay it out there unprocessed. We channel it into tactics and strategy. There are ways of using anger that can actually help promote effective change, but they require effort and discipline. Taking this time and effort is not passivity; it is already fighting back.
First, some basics. It is essential to treat nursing home workers and administrative personnel with respect. Many of them do have good intentions, want the best for the residents, and are struggling with very limiting conditions and inadequate resources. They should be treated as allies, not adversaries.
What about those who are not performing their jobs responsibly, or who may not have the best of intentions or who simply may not care? Treat them with respect anyway – because if you don’t, you are giving them something to use against you. One can never go wrong by being respectful. Either your respect is what the other person deserves, or else it is the first step in your battle plan. Either way, it’s a good idea.
Next, every family council should have this basic ground rule: only one person speaks at a time. The anxiety people feel often tempts them to break this rule, but that always comes with a price. If people talk on top of each other, or if many side conversations are going on, people’s voices will not be heard, and the council will lack the organization needed for effective planning. Every presentation should be brief and not turn into a speech, so that everyone gets a chance to speak.
What about the meeting itself? How does one avoid the futility of a “gripe session”? The answer is to stay focused. Don’t just present a problem to vent or “get it off your chest” and then go on to the next one. That will guarantee a lack of results. Rather, stay with each problem until a plan forms around it.
The plan for each problem will be specific to the problem, so it is helpful to prepare in advance. You need to know what your rights are before you can assert them. There are various sources of information you can consult. If you live in New York, get a copy of “Your Rights as a Nursing Home Resident in New York State”; it is freely available on the web. Consult your local long-term care ombudsman or citizens’ advocacy group to find out just what you can do about a given problem and what measures are available to you. They may be able to tell you if there is a federal or state regulation that applies to your situation. There are also many helpful sources online, such as those you can find in the Resources section of this web site.
Another very important step in preparation, which people usually fail to take, is documentation. Keep a journal. Do not use it as a weapon but as a tool. Make a note of every incident: what exactly happened, the day it happened, the time it happened, and the names of the people involved. This will strengthen your case tremendously, whether you must make it to the administration or, as a last resort, to the Department of Health. People frequently complain that the Department of Health doesn’t do anything. This complaint has a lot of merit. Enforcement is inconsistent and the bar set for substantiating a problem is, often, unnecessarily high. Nevertheless, with adequate preparation and documentation it is possible to get a real response even from the Department of Health.
Prioritize issues. Don’t expect to solve every problem in one swoop – if you present too many issues at once, it will be easy for the facility to ignore all of them. Do some triage: isolate the issues of highest priority, then gather your notes, and you are ready to make your presentation.
This next step is key: whenever presenting a problem to an administrator or staff member, always ask these two indispensable questions:
- What specific steps will you take to resolve the problem?
- When can I follow up with you?
These questions will keep the administration from putting you off with an easy “We’ll look into it” and then never contacting you again. In the first question the word “specific” is key. First get a commitment to a specific plan to which the administrator or staff member agrees. Then always follow with a request for a time frame. The second question will give you a time the other person agrees you may initiate contact. In essence, you are asking for permission to nag that person about your problem until it is resolved, and you will often get that permission.
Of course, these two questions may not work with just a single application. If necessary, keep asking them repeatedly, at every encounter. In many cases it will become apparent to the facility that fixing the problem will be easier than continuing to deal with your persistence.
We do not live in a perfect world. Sometimes even the best of strategies won’t yield the expected results. If struggling with the administration seems hopeless you can go to the Department of Health, but again, unless your case is very well documented and prepared, you will probably lose.
As to documentation, not everyone is a good or motivated writer. Those members of the family council who are good writers can help others get their histories on paper. A master document of incidents from many family members exemplifying a specific problem (for example, inadequate staffing) can be a powerful instrument in making a strong case and working towards change. It can even be accompanied by a petition when the issue is central and widespread. In these ways the family council acts as a unit, rather than as a group of disjointed individuals. A council so unified is much more difficult for an administration to ignore.
In a family council that is unstructured, consisting mainly of people venting their complaints without preparation and organization, the members are working against each other even though they may not realize it. Administrations already have enough power without giving them even more. A family council that knows its full strength and what it can do when properly organized can go a long way towards solving its members’ problems.
It is heartbreaking to see the potential of a family council wasted, to know that it could do so much, if only it realized the extent of its power.