How Nurses Affect Pain Management Practices in Nursing Homes and Shape Families’ Perceptions of Care : Page 2 of 2
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.
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-Mansfield37,38 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 staff31,43; 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.
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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The author reports no relevant financial relationships.
Address correspondence to:
Jonas Nguh, PhD, RN
BSN Academic Chair
School of Nursing
550 West Van Buren Street
Chicago, IL 60607