Intimate Partner Violence in an Outpatient Palliative Care Setting

Abstract

Although a few studies have evaluated intimate partner violence (IPV) in the oncology setting, to our knowledge no studies exist of IPV among palliative care patients. IPV may be exacerbated at the end of life because patients and their caregivers often experience significant stressors associated with physical, emotional, social, and financial burdens. We discuss IPV in the palliative care setting using the example of a patient with advanced cancer who experienced IPV. A better understanding and awareness of IPV at the end of life could help clinicians support and counsel patients and ameliorate the suffering caused by this “unspoken” trauma. We further discuss 1) the prevalence and indicators of IPV, 2) how to initiate conversations about IPV, 3) the resources available to clinicians, and 4) various management strategies.

Introduction

Intimate partner violence (IPV) is defined as “a pattern of assaultive and coercive behaviors that may include but are not limited to physical injury, psychological abuse, sexual assault, progressive social isolation, economic control, stalking, deprivation, intimidation, threats to do harm to the individual, their family members, and even their pets.”^1,2 IPV is unrecognized and underreported, and in some communities, it is ignored or even condoned.^3–5 It occurs among all racial, ethnic, and social groups, between both opposite sex and same sex partners.^6–8 Most studies of IPV have reported that 25%–30% of women and 8% of men in the general population will experience IPV during their lifetime.^8,9 The number could be much higher because of underreporting.¹⁰

IPV has significant physical and psychological effects on the victim.^1,2,10 It is associated with chronic pain syndromes, headaches, gastrointestinal problems, psychosomatic disorders, social isolation, sexually transmitted diseases, depression, anxiety, suicidal ideation, post-traumatic stress disorder, and substance abuse.^1,11–13 IPV also has been found to be associated with delays in seeking treatment in patients with gynecologic malignancies.¹⁴

Although some studies have evaluated IPV in the oncology setting,^7,12,14,15 to our knowledge, no published studies have assessed it in the palliative care setting.¹⁶ Palliative care patients may be at high risk for IPV because they are generally more vulnerable and dependent and more isolated as a result of physical and functional deterioration. IPV may be further exacerbated at the end of life (i.e., the last months of life) because patients with advanced cancer and their family members often experience heightened stress as a result of significant physical, emotional, social, and financial burdens. Unlike some survivors of IPV, many cancer patients with advanced disease cannot leave their relationships. The need for basic care (bathing and grooming) and lack of financial and community resources may bind the patient to the batterer. Those who have social and financial support outside of the relationship may find themselves bound by emotional ties to the batterer. IPV is underreported in part because of the shame and stigma that silence the victim, leading to the label “unspoken trauma.” A better understanding and awareness of IPV at the end of life and of its management could help clinicians support, counsel, and ameliorate the suffering caused by this “unspoken” trauma.

Here, we discuss a patient with advanced cancer who experienced IPV in the palliative care setting, and use this case to highlight some of the management issues regarding IPV.

Case Description

Because of the sensitive nature of this case, parts of the details have been omitted to protect the identity of the patient and her family. We would like to emphasize that this case report is based primarily on the patient’s reports. The palliative care team had no contact with the partner.

The patient was a woman with metastatic cancer. She had a significant history of marital discord. Prior to her cancer diagnosis, she reported significant back pain, which her partner had reportedly dismissed. This pain was later revealed to be related to her cancer.

The patient’s relatives asked her to move closer to them and undergo treatment at our center. When the couple first relocated, she stated the partner reportedly protested. The patient underwent chemotherapy, and developed progressive disease with worsening pain, nausea, fatigue and anxiety.

Several months after her initial presentation, she was referred to our outpatient palliative care service. At consultation, her key concern was marital discord; she was more concerned about her marital relationship than her cancer. The relationship issue persisted throughout her treatment and during her transition to hospice care.

Prior to the involvement of palliative care, the patient was accompanied by her husband to her oncology clinic visits. Although the patient stated that she needed the support from all of her family, he did not accompany her to any palliative care clinic visits. The palliative care team offered to meet with the partner in person but this did not occur. The patient reported that her partner complained when not included in doctor’s visits via telephone and made threatening remarks about her health insurance coverage. The partner had telephone contact with her oncology team but not the palliative care team. The social workers offered couples counseling on several occasions; however, the patient and her partner both declined at different times.

The patient was seen approximately once a month at the outpatient palliative care clinic. During individual counseling sessions with the palliative care physician and social worker, she reported repeated episodes of tension building and eruption and revealed her belief that her relationship stress was exacerbating her cancer. Relatives reported witnessing interactions between the patient and her partner that were similar to this cycle of abuse.

On multiple occasions, the patient described the relationship as “abusive.” She described her partner as having crying tantrums accusing her of infidelity. The patient and her relatives described the partner’s behavior as easily provoked, verbally abusive, prone to angry outbursts, and manipulative. A few months before her death, the patient revealed to her family her concern about evoking her partner’s anger. Relatives reported that the partner often responded in extremes, either by silently pouting or yelling. They recalled when the partner gave them orders and they often went along so as not to upset the patient.

Isolation was another major concern for our patient. In one session, away from her family, the patient revealed that she felt manipulated by her partner, resulting in her making choices against her better judgment. For instance, early in treatment, she was reportedly told to call a relative and cancel a visit. In addition to restricting her contact with her relatives, he reportedly denied her visits with their young child. Eventually, the partner’s issues involving the young child led to legal action initiated by the partner, which was subsequently resolved in the patient’s favor.

Control was another issue in the relationship. In addition to attempts to control her behavior, treatment, and relationships, she reported the partner maintained control over their finances. Although the couple shared a joint banking account, she was only given limited access.

In addition to poor communication with the patient and her relatives, the husband also had difficulty interacting with the health care team. A member of the nursing staff had a phone conversation with him and described his demeanor as dominating, threatening, and demanding.

The palliative care team approached the patient’s relationship concerns with education, affirmations, and a combination of counseling techniques: strengths perspective, reality testing, Socratic questioning/method, and family therapy. Reality testing affirmed for the patient that there was a problem to be addressed. Detailed information on all of these techniques can be found in Table 1.

Table 1.

Counseling Techniques to Address Intimate Partner Violence

Counseling Approach	Description	Sample Questions/Examples
Strengths Perspective17	Strengths perspective promotes a particular point of view, one that privileges accomplishments over failure, health over disease, and resources over deficits. Adverse experiences are not ignored, neither are they give “master status.” The goal is to “mobilize clients’ strengths (talents, knowledge, capacities, resources) in the service of achieving their goals and visions.”17	Tell me about your accomplishments. Tell me about the recognition you have received. Tell me about your hobbies, your interests. What moments or incidents in your life have given you special understanding, and/or resilience? What are your special talents, abilities? Tell me about some meaningful milestones you enjoy talking about?
Reality Testing18	“Being properly oriented to time, place, person and situation Reaching appropriate conclusions about cause and effect relationships. Perceiving external events and discerning the intentions of others with reasonable accuracy. Differentiating one’s own thoughts and feelings from those of others.”18 Information obtained from this assessment guides the counselor in determining the theoretical framework to utilize.	See Socratic Method below for sample questions on obtaining this assessment.
Socratic Method 19,20	The Socratic Method is comprised of three basic elements: systematic questioning, inductive reasoning and universal definitions. The systematic questions guide the flow of inductive reasoning. Systematic questions and inductive reasoning are used jointly to help derive a universal definition. A universal definition refers to the process of helping clients learn to see their problems from a broader perspective by defining relevant terms in a manner that goes beyond the specifics of their current life circumstances. 19,20	Patient (Pt.): I’m a failure as a wife. Clinician (C): Says who? Pt.: I do. C: What does failure mean to you? Pt.: I can’t make my husband happy. C: Can we look at this from a different perspective? Pt.: Okay. C: What makes you happy? Pt.: Being with my family. C: Are your family members making you happy? Pt. No. I feel happy when we are all getting along. C: What does your family do that makes you happy? Pt. They don’t do anything. I just feel happy to be with my twins and my husband and my family. C: Where does the feeling of happiness come from? Can anyone make another person happy? Pt.: I think I understand your point. Happiness comes from within. I cannot make my husband happy. He is the only one who can make himself happy.
Structured Family Therapy 21	“SFT is a therapy that is focused on concrete issues located in the present, mediated through the clients experience in session (mindful of the interactions between family members), based on reorganizing the structure of relationships, built on client strengths, aimed at palpable outcome, and characterized by active therapist involvement.”21	Therapist (T): Can we set some ground rules? Family members (FMs): Yes T: Can everyone agree to talk one at a time? FMs: Yes T: Can everyone agree to show mutual respect? FMs: Yes T: Can everyone agree to disagree? FMs: Yes T: What is the problem? Son (S): I’m concerned for my father’s safety. I don’t want my mother near him. She left, now my sister and I help him. T: Can you tell me why you feel this way? S: My mother says and does cruel things to dad. Father (F): I know she is not the same woman I married years ago but I want this to work. It would mean a lot to me if you two would encourage her to return to the house for however long I have to live. Daughter (D): I can do what you have asked, but first I need you to hear my concerns about what I have witnessed between the two of you… S: I feel the same way with one exception, if there is any physical abuse or threat of abuse. mom is out. D: I agree. F: You both know she has never hit me before. I really appreciate you two helping me with this. T: It sounds to me that your family deeply cares for your well-being and have agreed to your request. D and S: We can contact her later today if you want dad? T: You and your family members have courage to talk about things that can be painful and meaningful to all of you. This says a lot about your inner strengths.

As the patient’s disease progressed, she became more debilitated, and her relatives became more involved in her care. Early in the treatment phase the partner physically separated himself from the patient. Unable and uninterested in leaving the marriage, she asked her relatives to encourage and support her partner’s return to their residence, where she was being cared for by her relatives. She experienced rapid deterioration and was referred to an inpatient hospice, which provided a protected and safe environment while reinforcing the relatives’ presence and participation. She died soon afterward in the hospice with her partner and relatives present.

Comment

In this report, we describe emotional and verbal abuse in the palliative care setting. As illustrated in this case study, IPV can have a significant effect on patients’ physical and emotional well-being, social support system, and ability to seek health care. IPV also affects family caregivers and health care workers.¹⁴

Clinical Features

There are three established risk factors for IPV: social isolation, frail health, and increased dependence on another for care.^6,22 These factors are particularly common among cancer patients, the elderly and pregnant women, making these groups vulnerable to IPV.^3,6,16,23 This case report suggests that palliative care patients be considered another group because they are vulnerable, frail, and dependent. Other documented risk factors for IPV include a history of sexual abuse, rape, incest, and witnessing abuse as a child or adolescent.^3,24,25

As illustrated by our case, IPV can be characterized by a cycle of violence/abuse.²⁶ This cycle was initially reported with three phases: tension building, explosion or acute battering, and a calm, loving respite phase. The duration, intensity, and frequency vary among couples.²⁷ The respite phase tends to decrease in frequency and duration over time and may sometimes be absent completely, as with our couple.²⁸ This cycle of abuse appears to occur regardless of whether the one member of the couple is at the end of life or not.

The Centers for Disease Control recognizes four domains of IPV: 1) physical violence, 2) sexual violence, 3) threats of physical or sexual violence, and 4) psychological or emotional abuse. Psychological or emotional abuse can include but is not limited to “controlling what the victim can and cannot do, getting annoyed if the victim disagrees, disregarding what the victim wants, isolating the victim from friends or family, threatening loss of custody of children, denying the victim access to money or other basic resources.”²⁹

In our case, the partner reportedly 1) withheld access to resources; 2) became agitated when the patient wanted to remain near her relatives for treatment; 3) restricted her contact with her relatives and child early in treatment and threatened to take custody of the child; 4) disregarded the patient’s wishes; and 5) was absent from her care. Although some of these behaviors may occasionally be seen in any relationship, the collective and persistent nature of dominance and control, coupled with the patient’s self-acknowledgement of abuse, strongly supports the diagnosis of IPV.

Abuse can be expressed in different forms, but the outcome is control or dominance over another.²⁹ Several studies have revealed that dominance often escalates in response to separation.⁷ With her impending death, she reported that her partner’s actions and behaviors became more hurtful. Psychological and existential distress is common in patients at the end of life, even without abuse. IPV may intensify this suffering. Furthermore, various stressors at the end of life, such as increased caregiving needs and anticipatory grief, may exacerbate maladaptive coping by the perpetrator.

Diagnosis and Screening

IPV is often underdetected and underreported, making it difficult to diagnose and treat and to conduct research.^3,6–8 Coker et al.¹⁰ found that some women did not disclose IPV until the second time they were asked. The reasons for non-disclosure reported in the medical literature include the lack of a conducive environment, not being asked specifically about IPV, shame, emotional distress, fear of retaliation,^3,10 fear of the stigma of being a victim of IPV,¹⁵ self-blame, and not being aware that they were victims of abuse.^7,26 As noted by Walker,²¹ “to understand battering is murky at best.” Although no gold standard exists,^6,30 IPV is often diagnosed by self-reporting. In the palliative care setting, IPV can be even more difficult to diagnose because of comorbid conditions, such as delirium and depression.

Studies have demonstrated that patients want to be screened for abusive relationships.^3,4,10 The American College of Physicians, American College of Emergency Physicians, American Medical Association, American Nursing Association, and American Congress of Obstetricians and Gynecologists have all recommended IPV screening.^6,31 In 1992, the American Joint Commission on the Accreditation of Healthcare Organizations mandated that all hospital emergency rooms implement written policies to address IPV.^3,32 The mandate has since changed to include all hospitalized patients. However, IPV screening is rarely conducted on a regular basis.^4,6 Multiple validated tools exist for IPV screening, such as the 10-item Women’s Experience with Battering and the four-item Hurt, Insult, Threat, Scream questionnaires. Both have high (>80%) sensitivity and specificity.^9,22

In our institution’s outpatient palliative care clinic, we routinely ask patients the following questions at consultation: “Are you currently in a relationship where someone is hurting you?” and “Do you feel safe going home?” while their family members and friends are outside of the room. When indicated, we may repeat these questions in subsequent sessions. Maintaining a non-judgmental tone during the interview may enable patients to share their concerns.⁷

Management

A safety assessment is indicated after a revelation of IPV.³³ We typically ask, “Are there weapons in the house?,” “Is there any ammunition?,” and “Do you have a safe place to go to other than your home?” Patients with advanced disease may have few options. Education about IPV’s natural history, prevalence, characteristics, and effects may help to normalize their experience and address the shame and self-blame.^7,11,34 In our case, the social worker referred out to community resources for the patient and identified resources for the clinicians (Table 2).

Table 2.

Resource for Health Care Practitioners and Survivors of IPV

Compulsory Services	Description/Intervention	Resources
Mandatory reporting laws and policies	National Health Resources Center on Domestic Violence (NHRCDV), funded by U.S. Department of Health and Human Services. The center provides free technical support to public and private health professions, settings and departments. (A program of Futures without violence) Futures without Violence, not-for-profit agency. National technical assistance provider for all areas of abuse including children, elderly and disabled. American Medical Association35	NHRCDV toll free (M-F: 9–5pm PST) 888-792-2873. Visit: www,endabuse.org/health Email: health@endabuse.org. Compendium of State Statutes and Policies on Domestic Violence and Health Care.36 Health@futureswithoutviolence.org Or call 415-678-5500 Diagnostic and Treatment Guidelines on Domestic Violence 35
Community Resources	Assess patient’s awareness of community resources. Educate patient regarding specific resources in the community on IPV.	Area shelters Support groups, individual/couples/family counseling Safety planning services Crisis counseling 911 Police well-check visit. National Domestic Violence Hotline. Available 24hrs a day at 800-799-SAFE. National Coalition Against Domestic Violence which provides state hotline phone numbers. www.ncadv.org
Eourage Healthy Lifestyles	A positive approach to living. “Health promoting lifestyle is described as a wellness or health promoting lifestyle as self-responsible, nutrition awareness, physical awareness, stress control, and environmental sensitivity.”21	Diet/Food plan options Acupuncture Massage Meditation Yoga

IPV counseling should focus on empowering the patient to make the best possible decision for her own situation while remaining as safe as possible, whether this means staying in or leaving the relationship. Helping the patient identify and contact family members or friends who can help is a starting place. This has been an effective approach in our practice. Affirming the individual’s right not to be abused and informing them of available resources and options may be more helpful than attempting to take control for the patient.^3,7 We often reminded the patient in our case of her strengths, and this counseling technique, which is based on the strengths perspectives theory,¹⁷ was empowering for her and her family.

The decision to leave a relationship belongs to the patient: “Leaving a relationship is a process not an event.”³³ On average, it takes six attempts for victims to leave a relationship successfully.⁷ Numerous studies have revealed that dominance and violence escalate in response to a threat of separation.⁷ The IPV victim should be made aware of this and provided with exit strategies to keep safe if and when ready to leave the relationship. If there is an imminent threat of danger, law enforcement should be notified as soon as possible; “Few states have explicit mandatory reporting laws for domestic abuse, and it is not clear that mandatory reporting would best ensure the safety of competent adult victims or connect them with needed resources. However, virtually all states have some type of statute that requires physicians to report to law enforcement officials certain injuries that appear to have resulted from a criminal act” ³⁵ (Table 2).

Summary

Several studies reveal that dominance escalates in response to separation, which results in loss of control.⁷ In the palliative care setting, patients often experience a progressive loss of control of their bodily functions, disease trajectory, and decision making capacity. This often results in caregiver distress that further exacerbates the existing imbalance in power related to IPV, leading to further distress. IPV exists at all stages in life, including the end of life. Through routine screening, we identified an IPV victim and documented IPV’s characteristics and effects on her quality of life and psychosocial well-being. Health care professionals, including palliative care teams, should be trained to provide proper screening, education, counseling, and follow-up for IPV victims. Further research is needed to develop better strategies to manage IPV at the end of life.