How Nurses Affect Pain Management Practices in Nursing Homes and Shape Families’ Perceptions of Care

Despite the high prevalence of chronic pain among older adults in longterm care settings, a search of the literature indicates a poor pattern of pain management practices, suggesting that management of pain in these patients is limited and only partially effective. This article reviews nurses’ and families’ involvement in pain management care for older adults living in nursing homes and outlines some barriers to effective pain management, including a lack of pain education among nursing staff; attitudes of staff caregivers; organizational barriers that impede effective communication among residents, physicians, and staff caregivers; and the lack of a clear understanding by nursing personnel of families’ perceptions and concerns as they relate to the care of their loved one. When nursing staff listen to and collaborate with families, rather than viewing them as a barrier to care, more appropriate services may be provided, resulting in better pain management, more positive outcomes, and improved overall care.

Key words: Pain management, nursing home, undertreated pain, caregiver burden.
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Although many older adults are enjoying better health later in life compared with previous generations, few people actually escape some degree of dependency in their old age, and most find themselves in need of physical or emotional supportive care as they grow older. By far, the greatest source of support for older adults in long-term care (LTC) settings continues to be provided by their family network.¹ Because of substantial family involvement in the nursing home setting, many older adults are able to receive timely and appropriate care that they otherwise would have to wait for, including adequate and timely pain management.² Nurses, who are the primary caregivers in this setting, may perceive family interventions on behalf of patients to be a hindrance to care and an obstacle to their work routine. However, integration of families into the monitoring and decision-making of residents’ care may yield positive outcomes if done successfully. Addressing pain appropriately not only reduces undue patient suffering and healthcare cost, but also improves self-reported measures of moderate to severe pain, which are short-stay and long-stay quality measures of the Centers for Medicare & Medicaid Services Minimum Data Set 3.0.³

This article reviews barriers to effective pain management in the LTC setting and examines how nurses factor into the equation. It also discusses the available literature on how nurses shape the perspectives of family members whose loved ones require pain management. The available research shows very few studies have been published specifically on family members’ perceptions of pain management services for the older adult in this setting, and even fewer studies have addressed family members’ underlying assumptions of pain management or what expectations they have concerning their own roles and responsibilities. This gap in the research provides a rationale for further work in this area. A more comprehensive understanding of the obstacles to pain management and how families perceive pain management is essential in educating practitioners, framing problems, and assessing proposed reforms in pain management services to improve overall delivery of care in LTC settings.  

Barriers to Pain Management Care in Nursing Homes 

While the evidence base concerning the management of pain in elderly patients residing in nursing homes continues to grow, the findings of these studies reveal a consistent pattern of poor pain management despite the high prevalence of pain in this population.⁴

The literature on pain management treatment for elders is deficient, indicating that this research area deserves more attention.⁵ The lack of information is in itself a cause for alarm, given the universal understanding that untreated pain can cause unnecessary suffering by patients and pose a substantial burden on the healthcare system by increasing costs and draining resources.^6,7 This literature search uncovered several recurring themes that appear to hamper delivery of pain management care: lack of monitoring and documentation, lack of knowledge, staff attitudes toward pain and aging, and poor communication between patients and healthcare providers. Each of these issues is discussed in further detail in the sections that follow to provide context with regard to the role of families in pain management of LTC patients.

Lack of Monitoring and Documentation

While residential care facilities may aspire to provide quality care, there are gaps in how pain is assessed, monitored, and documented, leading to underreporting and, consequently, undertreated pain. One such deficiency is in recognizing and managing chronic pain with diligent history taking.^1,8-10 A survey of nursing homes by Achterberg and colleagues¹ revealed that for many residents who reported being in pain, there is no history of pain recorded in their case notes.

Cadogan and associates⁸ found that only 42% of patients with chronic pain who reported a preference to take medication received either a routine scheduled medication daily or an as-needed medication at least 50% of the time, and 52% of patients who preferred not to take medication were receiving routine daily medication or as-needed medication. Moreover, less than half (48%) of patients reported that their nurse had ever asked them about their pain. These findings suggest that more efficacious monitoring and evaluation by nurses may benefit older adults who are not receiving adequate pain care in the LTC setting.

Kane and colleagues¹¹ echoed these observations in their study, noting that many family members believe they are not taken seriously when they report their family member experiencing pain. Family members expressed their feelings that nurses were “too busy” or “not interested” in their patients’ pain reports. Coupled with a limited number of professional nurses and infrequent visits by physicians, the perception may be that detecting, assessing, and managing pain in nursing homes is, at best, haphazard.

Lack of Knowledge

There is evidence supporting the notion that undertreated pain can result from a lack of knowledge and understanding of pain management among nursing professionals.^12-15 Gordon and associates¹⁵ explained that nurses have fears about overmedicating patients; have difficulty discriminating between mild, moderate, and severe pain; have difficulty recognizing the inappropriateness of medical prescriptions; and have an apparent lack of knowledge about titrating analgesic drugs, all of which indicate a need for more effective education about pain management. These results coincide with the King study,¹⁶  which found that nurses acknowledge their limited understanding of pharmacology and recognize the need for education in this area.

Jones¹⁷ conducted an intervention study involving a small cohort of nursing home residents in Colorado to evaluate the impact of a four-part multidisciplinary training program on nursing home and physician pain management practices. However, the program yielded little success, revealing poor attendance to the sessions despite multiple incentives and reluctance by physicians to alter prescribing practices when contacted by nursing home staff. Although limited by small sample size and scope, the Jones study adds to the growing body of research examining the association between staff/administrative attitudes and patient outcomes. A literature review by Wowchuck,¹⁸ for example, suggested that nursing education has been shown to increase knowledge and thereby improve patient outcomes; however, to be effective, new educational programming must be supported by the facility’s organizational culture and must also take into account the beliefs, emotions, and attitudes of nurses. Moreover, rising concerns about potential addiction, abuse, tolerance, and dependence of analgesic medications¹⁹ underscore the need for uniform guidelines to help nurses administer these drugs appropriately.

Staff Attitudes Toward Aging and Pain

How staff perceive pain can also delay or prevent administration of care. Black and colleagues²⁰ noted a tendency for nurses and physicians to assume they know when their patients are experiencing pain. This assumption relies upon a level of understanding and knowledge which, as they suggest, does not exist, and consequently, patients may receive poor pain management. In a systemic review of the literature that identified a number of problems influencing pain management in nursing homes, Schofield and Reid²¹ reported a trend that staff caregivers perceive pain to be a natural part of aging; however, cognitive impairment, which affects at least half of the nursing home population, can mask the presence and severity of pain, thus becoming a barrier to pain assessment and treatment. This finding suggests that staff reliance on observation and subjective judgment alone—without proper assessment tools—is likely preventing patients from receiving pain care.
Nevertheless, staff do acknowledge that pain does not decrease when there is cognitive impairment and that the problem is more related to assessment of pain and the ability of staff to attribute behaviors to pain.¹⁵ In a qualitative study, Alexander and colleagues² reinforced that this difficulty of identifying pain behaviors exists, but they reported that the staff was more able to identify pain behaviors when they had received pain education.

In the results of a multifaceted, collaborative intervention project involving 21 nursing homes, Baier and colleagues²² found that staff members tend to underestimate the pain of residents, which may be attributed to staff becoming desensitized to pain. Desensitivity to pain symptoms jeopardizes the relationship between nurses and residents’ family members, who may perceive this attitude as a lack of caring for their loved one, and thus lead to further complaints about the quality of pain management care being provided.

Communication Issues

Several studies in the literature identify discrepancies in patient–physician and patient–caregiver communication as a potential source of underreporting and undertreatment of pain.^1,9,23,24 As Achterberg and colleagues¹ noted, dialogue with residents about pain is often suboptimal or nonexistent, leading to a substantial number of patients with inadequate pain relief. Nursing home residents may not report pain because they do not wish to bother staff.⁹ However, Vallerland and colleagues²³ found that communication discrepancies were mainly occurring between physicians and staff caregivers, and they demonstrated that when education was improved, recognition and acceptance for patients’ pain complaints and follow-up to address the complaints were improved. Furthermore, as explained by Lovheim and associates,²⁴ staff nurses, who may be aware of the pervasiveness of pain in the nursing home, may assume that residents are being treated for pain as needed by an attending physician; thus, they might overlook their responsibilities to discuss pain with patients so that appropriate treatment is given.

Why Families Become Involved in Patient Care in the Nursing Home  

Family caregivers are important stakeholders in a patient’s health and wellbeing, and it goes without saying, that individualized care is preferred, but it is often not given due to the numerous barriers to care delivery, as described earlier in this article. On a cursory level, evidence that families experience disappointment in the delivery of pain care by nursing staff is apparent in many common situations in which family members perform nontechnical tasks, such as a back rub or warm bath for their loved one. This literature search uncovered only a handful of studies that have investigated families’ attitudes and expectations of care specifically with regard to pain care in nursing homes. What follows is a brief discussion of the evidence reported in these studies.

There are a number of reasons why families become involved with a patient’s care. It has been suggested that families feel compelled to provide emotional support and social contact to their loved one as well as relieve their own guilt by visiting the nursing home and establishing relationships with the nursing home staff.²⁵ For some families, continual involvement can be important in maintaining a sense of purpose, self-worth, and continuity in their lives.²⁶ Some families want to become more involved in the care of their loved one because they perceive quality of care to be dependent on their participation.²⁷ Studies have shown that when families feel involved in decision-making processes of their loved one’s care, they are more likely to be satisfied with the level of care provided and more likely to visit.^10,28

On the other hand, Fox and colleagues²⁹ explained that family members feel a responsibility to make frequent visits to the nursing home if they do not trust the care being provided and if they perceive that their loved ones are at risk of being neglected or ignored on care issues, such as the recognition and effective management of pain. It can be reasonably assumed that family members who consider the nursing home to be an unfriendly and hostile environment may feel the need to visit more often than those who perceive it to be a pleasant and stress-free place for their loved one.

Many studies have argued that an effective pain management intervention must be an interdisciplinary effort that includes family caregivers.^28,30,31 As Reinhard and colleagues²⁸ assert, family caregivers represent healthcare “partners who offer unique and vital skills and resources” because they understand the needs and wants of their loved one better than nursing staff. Clinical evidence to support this claim is lacking, the researchers acknowledged, concluding that future research should evaluate whether prepared caregivers can contribute to the quality of patient clinical outcomes and safety, and how the caregiver’s involvement affects cost and care utilization.

How Family Involvement Improves Patient Wellbeing

Involvement of family members in the care of their loved ones in the nursing home setting contributes to the psychosocial wellbeing of the older adult.³² Moving into an institutionalized setting is a significant event in the lives of older adults, and family involvement can help to diminish distress associated with feelings of abandonment. Family involvement is meaningful because it reinforces patients’ sense of self and helps them retain their individual identity, particularly during the initial weeks following admission.³³ Involvement helps the resident counteract the overwhelming feelings of despair, which often rise after admission, enabling them to foster a sense of order and control in a foreign environment. To patients, families may represent the most basic link to the outside world and to the resident’s history, personal biography, and life values.³⁴ Many residents also look forward to family visits as a chance to express concerns regarding their care that they would not otherwise bring to staff.³⁵ Even cognitively impaired patients, who may appear totally unaware of the family visitor at the time of the visit, show varying degrees of awareness after the experience.³⁶

Family members may be in a unique position to assist in pain identification of residents with cognitive impairment. As several studies by Cohen-Mansfield^37,38 have found, assessment of pain in cognitively impaired nursing home residents is complex. In a cohort of nursing home residents with moderate to severe cognitive impairment, Cohen-Mansfield concluded that family members’ ratings of pain and of past sources of pain may prove useful in detecting pain; however, similar to other healthcare providers, even family members have difficulty detecting pain in severely cognitively impaired patients.³⁸ As he noted, pain ratings were more useful if families visited frequently, but caregivers can become overwhelmed by the emotional distress of visiting loved ones experiencing cognitive and physical deterioration,³⁹ so regular visitation may not be likely to occur. Some families may also be unclear about the demands of the institution or how they can assist in the complex care of their loved one, which may also discourage them from visiting.⁴⁰

How Families Perceive Care in the Nursing Home

Many families think that it is important to develop good relationships with nursing home staff and to be accepted as a member of the caregiving team and a resource of valuable information. Fox and colleagues²⁹ noted that families invest considerable time and effort in forming relationships with staff in the hope that doing so will yield better care for their loved one. Many families, however, struggle to have their loved one recognized as more than just a patient, but as a unique individual with idiosyncratic needs. Simmons and Levy-Storms,⁴¹ for example, described the perception held by some nurses that older residents are “pretty much alike.” The authors acknowledged this potential bias, citing it as a gap in practice and the reason for conducting the study. Their study supports the notion that in areas such as pain management, routine caregiving interventions are often generic in nature and not tailored to the individual patient’s needs and clinical condition, which gives credence to family members’ perceived deficit in care delivery.⁴²

Family members’ complaints regarding pain management care often center on the display of unsympathetic attitudes by nursing staff, and although most families try to maintain a level of cordiality with nurses, they find it distressing when the needs of their loved one are disregarded, ignored, or met with hostility.⁴² The absence of criticism does not necessarily indicate the family is satisfied. Some patients and their families may not openly voice dissatisfaction or criticize care out of fear of being labeled as “whiners” by staff.⁴³ Nursing home personnel have power over a resident’s quality of life whereas families tend to have few, if any, choices about nursing home placement. Leaving the nursing home because of dissatisfaction with the facility is usually not an option. Families are aware of these constraints and are mindful of the potential for negative consequences if they antagonize staff^31,43; if families speak up on behalf of the patient, there is a risk that their loved one may become ostracized.²⁹ Complaining also has the potential to make future visits more uncomfortable for the family and may reduce their number of visits, which can have a negative impact on the resident’s wellbeing.

How Family Involvement in the Nursing Home is Perceived by Staff

Conflict between the nursing home staff and family caregivers is not uncommon and is likely inevitable because the two groups often have disparate goals and competing agendas.³¹ As Lopez³¹ found in her interview-based study about nurses’ perceptions of family involvement in the end-of-life care of nursing home patients, conflict often arises between nurses and families when families disagree with the nurses’ choice of intervention. For example, one of the nurses interviewed in the study described a situation in which one of the patient’s relatives wanted the patient’s pain treated with narcotics whereas another one of the relatives did not want narcotics to be given. The nurse decided to withhold pain medication despite her own assessment of the patient’s pain. This case is an example of how nurses can become stressed if faced with the dilemma of providing care concurrent with families’ wishes or providing care concurrent with their own evaluations.

According to Cohen-Mansfield,³⁷ nursing homes have a functional logic of their own, and families may be perceived as intruding. For instance, nursing home staff may criticize families if they do not visit often enough or if they visit too often. There is a collective push to develop a
culture of urgency in LTC settings, as there is currently a gap in what is viewed as urgent by administrators versus what is viewed as urgent by family members and residents.⁴⁴
If families perceive this lack of urgency from their loved ones’ caregivers, they may be motivated to make demands and insist on a level of care that conflicts with a nurse’s orders. It can be reasonably assumed that staff may perceive families’ demands as bothersome if it disrupts their routine or causes extra work. Meanwhile, staff must suppress their annoyance and be polite to relatives, knowing the family may complain about them to a higher authority if they do not comply.

The literature calls for more active negotiation and mutually reflective power.^21,23-25 In other words, if family members and professional caregivers would engage in more reflection and listen more closely to the other, then collaboration would result. Regardless, discrepancies in role expectations and values often lead to conflict, which carries over into central care issues that affect patients’ quality of life, including pain management.

Conclusion 

Evidently, pain management practices are lacking in the nursing home setting due to numerous barriers: lack of education in nursing staff; attitudes of staff caregivers; and organizational barriers that impede effective communication among patients, physicians, staff caregivers, and families. Since pain management has been identified as one of the quality measures of practice in the nursing home setting, it is receiving much attention from healthcare regulatory agencies and from patients and their families. With the understanding that the demands in this care setting are multifaceted, varied, and often competing with one another, the path to improve pain management practices for elderly patients must be comprehensive, interdisciplinary, and involve all stakeholders in a patient’s care, including family members.

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Disclosures:

The author reports no relevant financial relationships.

Address correspondence to:

Jonas Nguh, PhD, RN

BSN Academic Chair

School of Nursing

Kaplan University

550 West Van Buren Street

Chicago, IL 60607

jnguh20@hotmail.com