September/October 2008 Issue
Managing Difficult Behaviors in Hospice Clients
By Sally Hill Jones, PhD, LCSW
Social Work Today
Vol. 8 No. 5 P. 28
Learn the best interventions for aggression, adherence issues, and long-standing maladaptive behaviors of hospice clients with personality disorders.
Hospice work can be a deeply rewarding field for social workers and is a natural fit with social work values, ethics, and skills. When clients’ or family members’ behaviors interfere with the “good death,” hospice social workers play vital roles in direct intervention, but they also indirectly help hospice team members understand the meaning of behaviors, their own reactions, and how to respond professionally. Commonly described challenges in this field include physically or verbally aggressive behaviors, lack of adherence to a care plan, and manipulative behaviors.
During the team process of discovering reasons for troubling behaviors, social workers can offer valuable knowledge of human behavior. This knowledge facilitates team members’ understanding and empathy, leading to more effective solutions to problems that may be encountered in hospice work. Social workers model, role play, and coach team members to avoid jumping to solutions by switching from “fix-it” mode to an interested learner stance, and use active listening skills to effectively explore with clients.
Social workers also indirectly assist clients by helping team members gain awareness and insight into their internal responses to clients’ behaviors that challenge personal values or goals, evoking strong emotions and sensitive personal issues. Social workers’ education about self-awareness and insight allows them to model and assist others with exploring and understanding reactions that do not fit a particular situation. The goal is to craft professional and personally congruent responses that are attuned to clients’ needs. Social workers also facilitate team processing of challenging situations and decision making in order to maintain cohesion.
Clients’ verbal or physical aggression towards hospice workers is understandably challenging for team members and important to address. Social workers can help team members observe and empathetically explore reasons for aggression. Possible explanations include pain, neurological impairment, drug side effects, cold, noise, rough handling by caretakers, or unmet needs. Aggression may serve to protect against vulnerability of feeling fear, sadness, loss of control, regrets, or legacy concerns. Social workers can also determine if aggression is symptomatic of a mental disorder.
Team members may need assistance with understanding their own responses to aggression, especially if negative personal experiences lead to overreacting, underreacting, or reacting with anger or distance. Social workers can model and coach team members to increase self-awareness and seek out supervision to develop a professional approach to client’s aggression.
Hospice team responses to aggression must attend to clients’ underlying needs while keeping safety as the highest priority. Team members must remind each other to use protective measures for safety in home visits, such as positioning oneself for an easy exit, keeping cell phones available, and immediately leaving if they feel endangered.
Ways to de-escalate anger by being nonthreatening include allowing the aggressive clients to have physical space; using nonthreatening body language; using a calm, firm tone of voice; and communicating an understanding of clients’ concerns. Other methods include ignoring the behavior, distractions, offering alternatives such as placing something in the client’s hands, another form of expression, aromatherapy, or soothing music. When there is a need to set limits, social workers can model phases, such as “I need you to lower your voice so we can continue to talk about your concerns” or “I need you to use respectful language so I can hear your concerns.” In extreme cases, supervisors may need to explain limits and consequences to clients.
Clients refusing visits, medications, or other aspects of a care plan can be frustrating for team members. Social workers can assist the team with exploring reasons from an attitude of interest and openness and involving clients or their family members in problem solving. Misconceptions may need to be addressed, such as believing that social workers are only for the those with mental illness or for removing children from the home, chaplains will proselytize, or medications will lead to addictions or decreased alertness. Cognitive deficits or caregiver overload may also need addressing.
When adherence issues involve trouble with accepting the reality of a terminal prognosis, social workers can assist the team to accept where clients are in the process and develop ways to match team support to clients’ levels of acceptance. Social workers may also assist with reframing the goals of visits or medications to fit clients’ needs. For example, a client who wants to stay active in order to play with his or her grandchildren or continue painting can be guided to see medications as helping toward that goal rather than signifying the beginning of the end.
When mentally competent clients simply disagree with a care plan, team members may lose sight of the clients’ right to refuse services. Hospice social workers must advocate for clients’ self-determination in these situations and also facilitate the team’s exploration of and respect for their decisions, viewing them within the context of what is meaningful for clients. For example, a hospice social worker helped team members accept Ms. F’s decision to refuse medication by describing her long-term endurance of arthritis pain as a badge of honor worth more to her than pain relief.
Another adherence challenge comes when clients and family members disagree. Examples include family members wanting inadequate medication so that clients remain alert, or family members wanting clients to continue receiving full baths once they become painful. When clients are competent to make decisions and express their wishes, social workers offer family intervention to negotiate differences and find areas of agreement while honoring clients’ decisions. Sometimes, clients are unable to make decisions or fear disagreeing with family members. Social workers again assist the team with exploring the meaning of the desired outcome, using active listening. Family members may be resisting their loved one’s decline and eventual death, trying to feel useful or even retaliating for past hurts. The team can explore alternatives, intervene to assist with grief or resolution, or institute protective measures.
Team members’ internal responses to a lack of adherence can include a strong need for control that becomes problematic when clients block their efforts to relieve pain and suffering and provide the good death. Social workers can model and teach “letting go” skills, as well as openness to learning from challenging client situations.
Long-Standing Behavior Patterns
When hospice clients or family members have long histories of psychological struggles, clinical assessments are needed. Several authors have discussed end-of-life care for those with severe and persistent mental illness, such as schizophrenia or bipolar disorder, as well as posttraumatic stress disorder.
Some challenging behaviors indicate diagnoses or features of personality disorders. Clinical training and licensing is required for diagnosing personality disorders to avoid confusion with cultural differences, effects of substances, or other disorders. For hospice clients, social workers must assess whether the symptoms are situational responses to the stresses of loss, illness, and death. Personality disorder symptoms include long-lasting impairments in cognition, affectivity, interpersonal relationships, and impulse control (American Psychological Association [APA], 2000), and commonly evoke strong emotions and reactions in others. Helpers often label these clients “difficult” (Rosowsky & Smyer, 1999) because of extreme manipulative, controlling, or self-centered behaviors. Team members frequently find their usual ways of assisting clients ineffective in these situations because the underlying reasons for behaviors are different than for other clients and require different responses.
The personality disorder classification system has many limitations, including difficulties making the diagnosis and application to older adult populations (Van Alphen, Engelen, Kuin, & Derksen, 2006). Studies have begun in this area (Rosowsky, Abrams, & Zweig, 1999), with some evidence that acute symptoms of certain personality disorders remit with age (Engels, Duijsens, Haringsma, & Van Putten, 2003). However, the prospect of death may evoke earlier difficulties. Effective treatment for those with personality disorders is usually long term and intensive and requires specialized training, putting it beyond the scope of usual hospice services.
Social workers need to clarify with team members that these long-standing issues will not be resolved with hospice care. Clinical social workers, psychiatric nurses, and psychiatric consultants should be used to providing high-quality care based on a thorough understanding of clients’ issues and behaviors and how they impact the dying process. Over the years, many have provided rich understandings of personality disorders from which to draw when working with hospice clients, especially borderline personality disorder (BPD) and narcissistic personality disorder (NPD).
Borderline Personality Disorder
If hospice clients have diagnoses or features of BPD, it is crucial for clinical social workers to help the team develop a good understanding of clients’ life experiences and histories in order to respond with a balance of empathy and limits. Because persons with BPD have great difficulties managing emotions and maintaining relationships, helping clients have the best possible death, as they define it, can be a rocky journey. Facing death involves powerful emotions that easily overwhelm the capacities of those with BPD and evoke strong fears of abandonment. Therefore, a major component of hospice care is to establish and maintain positive relationships with clients (Hill, 2005; Landesman, 2003).
The overall challenge for team members is maintaining internal balance in relation to the client and in feeling/thinking, compassion/objectivity, and closeness/distance within the context of the client’s precarious internal stability. Clients with BPD lack an internalized sense of stability, often because of early internal and environmental deficits, so they experience overwhelming emotions, emptiness, extreme neediness, and abandonment fears. Life is a constant struggle for emotional survival, requiring much energy tending to regulation and emotional supplies. Without reliable internal supplies and because their dependence, fear, and anger when feeling abandoned often push others away, they unwittingly create the abandonment they most fear. Behaviors perceived by team members as manipulating or attention seeking are often tied to this desperate need to prevent abandonment, ensure that needs will be met, and manage strong emotions.
One particularly troubling symptom of BPD is instability in relationships, with the tendency to either idealize or devalue others. Unable to regulate emotions or hold on to the whole person, they view others as all good or all bad, depending on whether their needs are being met. Team members often react with corresponding feelings of overinvolved protectiveness or hostile distancing, which can lead to strong disagreements among team members. If team members are aware of this tendency, they can better manage their own reactions, resist temptations to personalize clients’ views of them, and respond more often with empathy and reasonable limit setting. Team members must be aware that relating to clients with BPD strains individual and team cohesion, requiring especially good communication and support. Clients may “fire” a team member, requiring support from other members in recognizing everyone’s susceptibility to being the “bad guy,” processing what occurred, and learning from it.
Narcissistic Personality Disorder
Hospice clients or family members who display features of narcissistic personality disorder (NPD) have a long-standing and severe pattern of self-importance, need for admiration, and lack of empathy for others (APA, 2000). Adult narcissism ranges from a healthy sense of one’s own and others’ worth to extreme grandiosity and entitlement resulting from early deficits. Persons with NPD strongly defend against painful unconscious feelings of insignificance and powerlessness with a belief in their exceptionality and entitlement, coming across as arrogant, superior, and uncaring about others. Life is governed by the need to maintain these defenses through consistent outside confirmation of their specialness. These traits may soften in adulthood, but the dependence and decline of physical functioning and appearance that accompany illness and death for clients and the loss of narcissistic supplies with significant others’ deaths potentially threaten their sense of grandiosity and cohesion.
For the hospice team, clients or family members with NPD traits may evoke strong feelings of inferiority, hostility, and amazement at the pervasive self-involvement. These clients are often highly critical and demanding of hospice staff, as well as their families. The reactive tendency is to be offended, “bring them down a notch or two,” or become harshly self-critical, which can be further complicated by significant personal experience with these behaviors. Social workers can assist team members to respond professionally rather than react based on knowledge and empathy with clients’ underlying issues.
Although the natural inclination is to deflate clients’ grandiosity, it is more helpful to support the defenses and stay acutely attuned to their experiences. This is done by taking a highly respectful, nonchallenging position and communicating accurate empathy. Hospice team members need to give clients with NPD positive feedback while remaining genuine and in as much control as possible by responding to criticism with empathy and interest in the clients’ needs and desires. Sometimes, with such a foundation, clients’ fears may subside, requiring fewer extreme narcissistic behaviors.
Social workers can help team members listen for words and concepts that clients use to express desires for a good death, perhaps emphasizing dignity, respect, pride, or physical appearance, and use these to empathetically respond. Legacy, in the form of continuing admiration and not being forgotten, may be important to clients with NPD. They may ask to see supervisors, medical directors, or “experts,” taking their opinions more seriously than other team members. Instead of being offended, team members can view this as a helpful tool when other methods fail.
Social workers can also help team members empathetically set limits. For example, clients may request in an entitled or demeaning manner more frequent visits than are warranted. Team members must not send the message that the desire for more care is excessive, but empathize with the desire while also explaining the limit by saying something such as, “I can see how you would want this kind of care, and I wish we could provide it. We are not set up to offer this level of care.” Setting the limit may need to further include, “This level of care is only provided by an inpatient facility or hospital.” Several repetitions may be needed, and the client may become quite angry, demanding, or dismissive.
Hospice team members need to support each other since the critical and entitled postures of clients with NPD can threaten confidence and sense of self. The team may discuss these clients a great deal, relating the latest example of arrogance or lack of empathy, as an attempt to integrate the extreme nature of the narcissism, but the context of clients’ deeper pain must be remembered.
Ms. S, a woman in her 50s diagnosed with cancer, was estranged from her children and had a long-standing, conflicting relationship with her partner. She refused most social work visits and allowed few nursing visits but developed an intense relationship with the chaplain, usually keeping discussions fairly shallow. She consistently anticipated abandonment from hospice, resulting in periodic bouts of intense anger.
Because there were no typical signs of disease progression, the medical director wanted a nonintrusive diagnostic test, which Ms. S refused. She would not discuss the reasons for her refusal with team members despite several attempts. The team identified one potential cause as physical symptoms evoking unresolved emotions from a sexual abuse history, resulting in the need to maintain control over her body. Another possibility was personality disorder features, including long-standing symptoms based on her fears of abandonment.
Team members experienced helplessness as they faced a no-win situation of needing the diagnostic test to continue services, while test results could cause discontinuation of services, confirming Ms. S’ fears of abandonment. They feared she would fire them if they insisted on the test.
In a parallel process, they were experiencing the helplessness and fear of abandonment that Ms. S had for much of her life. The team sought consultation and decided to insist on the test despite the abandonment fears, seek an opportunity to help the client have a different experience with her fears, and deal with her using both compassion and clear limits.
To protect the chaplain’s relationship, a social worker was chosen to inform the client of the need for the test. She approached the client empathetically, acknowledging the difficulty of the choice, explaining the need for the test, and attempting to explore Ms. S’ feelings about the situation but with no success. The social worker explored possible consequences of her choices, including discontinuation of hospice services without proof of disease progression and described other choices for her care should hospice be discontinued. The client agreed to the diagnostic test but then refused the social worker’s visits. The diagnostic test showed clear disease progression, allowing her to remain in hospice care. She allowed another social worker to begin visits. As her disease progressed, similar dilemmas arose, and the team was able to use the skills they learned to maintain relationships with her. Ms. S continued to see the social worker and died under hospice care.
Hospice social workers play a pivotal role in assisting team members to respond well to challenging client behaviors. Knowledge of and experience with exploring and assessing underlying reasons for behaviors, working with persons with mental disorders, and using self-awareness to respond professionally and empathetically make social workers an asset to clients, family members, and team members during end-of-life care.
— Sally Hill Jones, PhD, LCSW, is an assistant professor at Texas State University School of Social Work in San Marcos.
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