The United States Long-Term Care Ombudsman Program: understanding the real-life circumstances underlying resident complaint data

One of the most important concerns of people living in long-term care settings, such as nursing homes, is the quality of care they receive. In the 1970s, recognition of the need for improvements in the quality of care provided to long-term care facility residents (hereafter simply ‘residents’) prompted the US Administration on Aging and state units on aging to develop and implement strategies for receiving and dealing with residents’ complaints about facilities and quality of care. Amendments to the Older Americans Act in 1978, accompanied by further legislation in subsequent decades, mandated that each state establish a long-term care ombudsman program to provide advocacy for residents [1]. The Institute of Medicine’s extensive evaluation of the long-term care ombudsman program, published in 1995, has strongly influenced the program’s more recent development [2].

Derived from Swedish, the term ‘ombudsman’ denotes, in some settings, an impartial agent who mediates disagreements; however, ombudsman is used in the US long-term care setting to mean a person who hears and attempts to resolve residents’ complaints, with a clear interest in advocating for the rights of residents over the concerns of other parties. Specifically, long-term care ombudsmen are required by the Older Americans Act to “identify, investigate and resolve complaints that are made by, or on behalf of, residents; and relate to action, inaction or decisions [by healthcare providers, public agencies or health and social service agencies] that may adversely affect the health, safety, welfare or rights of the residents” [1]. According to the Older Americans Act, ombudsmen are also obligated to “represent the interests of the residents before governmental agencies and seek administrative, legal and other remedies to protect the health, safety, welfare and rights of the residents” [1]. In addition to advocating for residents on an individual basis, many ombudsmen engage in efforts to improve long-term care conditions on broader levels. Such activities, termed ‘systemic advocacy’, are also supported by the Older Americans Act, as discussed below. To accomplish their responsibilities, state and local area ombudsmen supervise not only paid program staff, but a cadre of some 8700 volunteer ombudsmen nationwide, who are trained and certified to deal with residents’ complaints [3].

As a certified volunteer long-term care ombudsman serving in my own community, I am responsible for visiting approximately 100 residents of a large nursing home, listening to complaints about the quality of care they receive and working to resolve their complaints at the ground level. I send records of my interactions with residents, their families and facility staff to our local area ombudsman, who coordinates approximately 21 volunteer ombudsmen. With strong encouragement from the Institute of Medicine, the Administration on Aging has consolidated information about residents’ complaints through the National Ombudsman Reporting System (NORS) since 1995 [2,101]. Annually, the NORS database accrues over 200,000 individual complaints logged by ombudsmen on behalf of residents. The database documents barriers to quality of care faced by residents, as well as the receipt and resolution of residents’ complaints by ombudsmen. Nationally aggregated and state-level annual complaint data from fiscal years 1995–2005 are publicly available and easily accessible online [101].

The NORS database can be used by government officials, state and local level ombudsmen, academic researchers, the long-term care industry and the general public to gain a sense of the type of improvements in long-term care that need to be made to improve residents’ quality of life (QoL). However, as with any large-scale data collection system, the NORS database contains a distillation of real life in the form of numeric codes representing types of complaints. These codes can only go so far in capturing the reality of what goes on in the lives of residents. Meaningful interpretation of the NORS database thus requires an understanding of the real-life circumstances that generate the data. In this article, I present my perspective of some of the complex situations represented by the codes used in the national complaint database, based on my experience as a volunteer ombudsman at the ‘front lines’ of data collection.

Owing to the wide latitude in the Older Americans Act regarding program implementation, the structure and functioning of long-term care ombudsman programs vary substantially from state to state. Thus, qualitative or quantitative state-to-state comparisons of resident complaints are difficult to interpret [2]. However, the circumstances leading residents to complain about quality of care are likely to occur with reasonable similarity nationwide, and data regarding residents’ complaints are collected and coded in a nationally standardized manner. Codes for over 100 specific complaint categories fall under five broad headings:

•	Resident rights
•	Resident care
•	Quality of life
•	Administration
•	Agencies, systems or people outside long-term care facilities.

The complete list of complaint codes and definitions is accessible at the Administration on Aging website [101]. Several issues should be considered in the interpretation of the codes assigned to specific complaints. These issues include the variation in individual residents’ circumstances that might be coded identically, the widely disparate needs different residents have that might lead to identical complaint codes, the inclusion of both faulty actions and instances of inaction within identical codes and the possibility that some complaint codes may apply only to subsets of the overall population of residents.

All of these issues can be illustrated through an extended example, based on one code, shedding light on the range of residents’ experiences that a single code may represent. We will take for our example code 41, which is used in the NORS database for complaints regarding call lights and responses to requests for assistance [101]. Call lights, typically located in the hallways outside resident rooms, are activated by small electronic buttons placed at each bedside that residents can press to request assistance from the nursing staff.

The first issue to consider in understanding call-light complaints is that the specific circumstances leading to the complaints vary widely. Sometimes, a complaint refers to a malfunction of the call light itself. Over the past year, I have experienced various malfunctions of the buttons that activate call lights, including buttons becoming disconnected from the electrical system, buttons breaking or falling apart and, in one instance, a broken button that had not been repaired for weeks. However, mechanical malfunctions seem to be rare. More commonly, residents have complained to me that when they use their call lights, they wait too long before receiving any response from the nursing staff. What does ‘too long’ mean? One resident who carefully tracked and logged the responses to his calls told me that he had waited over an hour at times; he would have been satisfied if help had come within 15–20 min. Other residents demand almost immediate assistance, saying that even 5 min is too long to wait for an answer to a call. 5–10 min can seem to pass in the blink of an eye to a busy aide going from room-to-room caring for 8–12 residents. However, the same 5 or 10 min can feel like an eternity to a bed-bound resident who has nothing to do but sit and wait. Gladly, the vast majority of residents I visit have told me that even if they have to wait ‘too long’, when their call lights are answered, they are able to get what they need from the staff. In addition to problems with the timeliness of staff response, residents sometimes complain about being treated rudely and disrespectfully by staff who respond to their requests for assistance. In an extreme case, a resident reported to me her experience of activating her call light and waiting for a response, only to watch an aide come into her room, turn off the call light and walk out without saying a word!

The second issue in understanding call-light complaints is the wide assortment of reasons residents call for assistance. Some requests for assistance are more important or urgent than others. For example, among the residents I have spoken to in the past year, reasons for using call lights included needing a window closed, needing to get up to use a commode, needing help putting on clothes, needing a delayed medication dose and needing bed clothes that were soiled with feces to be replaced. One standard for high-quality care in response to requests for assistance should be promptness. However, prompt or tardy responses have widely varying impacts on residents’ overall QoL owing to the diversity of reasons residents use their call lights. A resident who waits 30 min for help to put on an item of clothing may face a minor inconvenience. Conversely, a resident who waits 30 min for help to transfer from their bed to a commode may suffer unnecessary discomfort and humiliation.

The third issue important for understanding call-light complaints is that some such complaints come up without the call light ever having been used at all. In my experience, a small percentage of call-light complaints arise from residents who would use their call lights to request assistance, but are in some way impaired from doing so. For example, I recently visited a woman who has very limited mobility. She is accustomed to using her call light regularly to request help from the staff. When I entered her room, I found her in her chair, moaning about pain and wanting help. However, the button to activate her call light was on the other side of her bed, far out of reach. I asked her if she knew how to get the staff’s attention and she said, “yes, I have a little red button” (meaning the button to activate the call light). “Where is the button?” I asked. “I don’t know,” came her reply. Had this woman’s button been correctly placed within easy reach of her chair, she probably would have used her call light to request assistance. Thus this resident’s complaint arose not because of a problem with how her request for assistance was handled, but because she could not make any request in the first place, owing to negligence of the staff in failing to place her button within her reach.

A final issue to remember when interpreting call-light complaints is that such complaints only reflect the experiences of residents who are competent to use their call lights or otherwise request assistance from staff. For the most part, the experiences of residents who are cognitively impaired or demented to the extent that they are incapable of requesting assistance are not captured in the call light complaint category at all.

Ironically, the complexity and variety of the call light situations described above can all be boiled down to the number ‘41’ for coded complaint data reporting. Similar illustrations could be given for virtually any complaint category. Using single codes to represent such varied complaints requires omitting many details about individual circumstances from the NORS database. However, despite their incompleteness, the NORS data contain important information for understanding problems that need to be dealt with, not only at the level of individuals, but at the broader systems level. The appearance of many similar complaints that fall into the same category can motivate responses of systemic advocacy, meaning efforts to affect system changes for improvements to many residents’ QoL. (In this sense, the NORS data can be seen as fulfilling a role similar to the data collected through the US FDA Adverse Event Reporting System, which contains information about adverse events, errors and other problems related to the use of approved prescription drugs and medical products [102]. The emergence of enough similar reports related to specific drugs can trigger systemic responses by the US FDA, resulting in broad measures to prevent future problems.)

The Older Americans Act supports systemic advocacy, requiring that ombudsmen “analyze, comment on and monitor the development and implementation of Federal, State and local laws, regulations and other governmental policies and actions, that pertain to the health, safety, welfare and rights of residents, with respect to the adequacy of long-term care facilities” [1]. The Older Americans Act also specifies that ombudsmen are to “recommend any changes…the [ombudsman] determines to be appropriate; and facilitate public comment on the laws, regulations, policies and actions” [1]. Long-term care ombudsman programs in some states devote significant attention to systemic advocacy, dealing with such varied issues as financial exploitation of residents, involuntary discharge of residents, availability of air conditioning and minimum staffing ratios [103].

Many common resident complaints deserve systemic advocacy by ombudsmen. Call-light complaints have topped the charts of the NORS database every year since 1997, comprising over 5% of all complaints in 2005. Complaints about menus (code 71), dignity and respect in the attitudes of staff (code 26) and resident care plans (code 42) each garnered 3–4% of the total 2005 complaint tally [101]. These types of complaints, and many others, can be categorized under the umbrella of failures of long-term care facility staff to practice resident-centered care. Grass-roots movements to change the culture of long-term care facilities toward resident-centered care models are active nationwide [4]. The success of resident-centered care approaches will rely heavily on long-term care facilities’ abilities to promote and maintain attitudes and actions among staff that are rooted in genuine selflessness, love, and compassion toward residents. It is hoped that as culture change takes hold in more facilities, many types of resident complaints will diminish. The NORS database may provide indirect evidence of successful culture change by documenting trends of decreases in some complaint categories. Decreases in call light complaints as the percentage of total complaints may be a particularly sensitive indicator, owing to their historically high percentage of total complaints.

The NORS database contains ample data documenting the great need for continued individual advocacy efforts, and suggesting targets for systemic advocacy. However, nationally standardized complaint codes barely scratch the surface of the complexity of quality of care issues faced by residents. Interpreting the complaint data appropriately thus requires consideration of the circumstances that lead to complaints appearing in the NORS database. My hope is that researchers, policy makers and others who use the NORS database will enhance their understanding of the data by going beyond the numbers and seeking to appreciate residents’ multifaceted lives and real day-to-day experiences. After all, as the Institute of Medicine strongly emphasized in their 1995 evaluation of the long-term care ombudsman program, residents are “real people with real problems” [2]. Ombudsmen committed to advocating for real solutions to these problems at both individual and systemic levels will continue to play a valuable role in improving residents’ quality of care and QoL.

Disclosure

The author is employed full time by Harvard University as a research assistant in the Department of Nutrition. This employment does not carry any conflicts of interest with the author’s work as a certified volunteer long-term care ombudsman.

Acknowledgement

I thank JaNeece Thacker and Jocelyn Kasper for helpful discussions while preparing this article, and Dan Goldberg for his guidance and mentorship.