Tell me where it hurts: The costs, resolution and effect of pain on quality of life in long-term care

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Susan Caccappolo
Susan Caccappolo
Dolor, douleur, schmerz, masakit ... Call it what you will. The fact is that pain hurts. There's too much of it around. It exhausts both residents and staff. And as a result, it raises our costs. Articles on pain in the popular press tell us that among all Americans, at least 20% experience pain on a regular basis.

But that alarming figure can't compare with pain in long-term care. How we handle pain speaks volumes about the quality of care we provide, and how our staff feels about the care they give. Sensitize staff to pain and its impact, and everyone will be better off. 

Among the more than 1.5 million elderly currently residing in nursing homes, research studies tell us that more than half experience substantial pain. Of these, a staggering 49% to 83% suffer with pain that is under-treated.

In addition, between one-quarter and one-third of residents are known to have moderate pain on a daily basis. No surprise. Residents with or without cognitive impairments don't differ with respect to the prevalence of conditions likely to cause pain. Yet individuals with cognitive impairments receive consistently less treatment for their pain than those who are cognitively intact. Tragically, as one study showed, only 7% of cognitively impaired residents were able to experience deaths free of discomfort.

An unrecognized problem


How might we account for these appalling numbers? Researchers tell us that pain is often untreated because it's unrecognized. This is especially distressing because we know that pain can often be remedied if identified.

Consequences to the resident of poorly assessed and treated pain can be devastating. Unmanaged pain can lead to altered immune function; impaired physical, cognitive and psychological function; sleep disturbance; and decreased socialization. We now know that unmitigated pain can even become a disease itself. Is this what we want for our own parents ... or for ourselves?

Additional studies teach us the more global consequences of the failure to manage pain. Consider that the individual with poorly managed pain becomes increasingly dependent and helpless, leading to increased use of healthcare resources - resources that include our staff.

Increased resource use snowballs into increased cost of care, further burdening our facilities and our healthcare system. The outcome of this systemic failure is an overall decrease in the quality of life for all of us.

Clearly, untreated or under-treated pain afflict residents, their family members, facility staff members, and, eventually, society as a whole.  How can we deal with pain in a worsening economy with fewer resources?

Answers to the problem


Understanding barriers that prevent us from managing pain helps us to do "the right thing" by our residents, family members and staff.  Often, barriers exist within the system itself. Some prescribers are reluctant to appropriately medicate for pain. Naiveté regarding opioid drugs and an unfounded fear of addicting residents with terminal diseases lead to distressed residents who need "assistance of two" staff members where one might be sufficient for a resident whose pain was well-managed.

Staff may show a lack of trust in residents' reports of the severity of their pain, but who knows better than the individual who is suffering?

Residents may not know how to describe pain or may be hesitant to complain about it because they believe that pain is just part of aging, or fear they'll be viewed as "problem" residents.  Or they might wait so long to report pain that it becomes intractable and difficult to treat. Family values and beliefs, combined with fear, depression or denial also could interfere with managing pain, as might the family's lack of knowledge about pain management techniques.

Formidable barriers exist for staff members trying to provide appropriate pain management for residents. Staff become frustrated when they lack clinical knowledge about pain and its treatment, or when they don't know how to assess pain in residents, especially those who are cognitively impaired and can't speak for themselves. Facilities might lack appropriate mechanisms that enable staff to report pain or communicate with physicians.

Frequently, low pay and high caseloads result in high staff turnover leading to assignment of new staff members who don't know their residents well, making it difficult to assess their needs. Saddest of all are the cases in which staff becomes habituated to residents' complaints of pain, simply because unresolved pain is all around them or because they feel so powerless to do anything about it.

A healthy investment


So what can be done to prevent us from feeling that when we clock in on our daily arrivals, we're not entering a "House of Pain"?  Pain education is a good investment.  When healthcare workers think about pain, most associate it with some physical problem, but pain takes a variety of forms.

Psychological pain troubles those with histories of mental illness, as well as those who, for the first time, confront depression associated with disease progression and functional loss.

Emotional pain is associated with non-pathological sadness related to cognitive decline or fear of increasing pain. Existential pain afflicts those with unresolved life issues like unrealized dreams of success or family conflicts.

Left untreated or under-treated, all types of pain diminish quality of care. And distressed residents require more care from staff.

Well-managed facilities provide pain in-services for staff, and engaged staff members commit themselves to increasing their pain knowledge. Remember: Knowledge is power, in this case power over pain.
Facilities that empower their workers to identify and treat various kinds of pain find they have less of it. Empowered workers make better team players, and feel greater job satisfaction and reduced stress.
Look at any staff members wearing knee or back braces and it becomes clear that they're managing their own pain while attending to the pain of their residents. Caring must include care of self as well as care of residents.

Finally, we must always respect that pain is whatever the resident says it is. Person-centered care demands this approach and rewards those who provide it with the satisfaction of providing compassionate and appropriate care. 

Let's do everything we can to be more mindful of pain in those we serve and in ourselves. Through heightened awareness, we can manage it effectively and efficiently and say adios, au revoir, auf Wiedersehen and paalam to pain for good.

Susan Caccappolo, MSSW, LCSW, is education and training associate at the Schervier Center for Research in Geriatric Care in the Bon Secours New York Health System. If you would like additional information about managing pain in the nursing home, contact the author at: susan_caccappolo@bshsi.org.

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