Abuse and Neglect: Pediatric (Hospice and Palliative Care) - CE/NCPD

ALERT

A patient who is in danger should not be left in the abusive environment. Follow the organization’s policy for removing a pediatric patient from an unsafe home and provide for further examination, treatment, and protection.

A mandated reporter who has reasonable cause to suspect that a child is being abused must immediately make the report in accordance with local, state, and federal laws.

Mistreatment of a child may include visible physical injury or nonvisible injury, including neglect, emotional abuse, or sexual abuse.

If the patient discloses abuse, question the patient carefully, without leading. If the patient does not disclose abuse, arrange any interviewing to be at a child advocacy center or another setting with a qualified team of interviewers that allows the patient to be interviewed only once.

Refer to individual state laws and licensing boards for training and reporting requirements for mandated reporters.

OVERVIEW

All members of the hospice care team are designated as mandatory reporters of child maltreatment in accordance with local, state, and federal laws.^{undefined#ref5">5} Certain members of the hospice team (e.g., hospice aides, volunteers, medical equipment delivery people) may not report directly to child protective services if they find suspicion of abuse or neglect, but should confer with the hospice care team to ensure that it is reported to child protective services. Pediatric patients in hospice care may be subjected to abuse. Although there are several definitions of abuse, in general, it is any knowing, intentional, or negligent act by an adult charged with the care of a child or any other person who causes harm or serious risk of harm to a child, whether that person is chronologically an adult or physically an adult.²

Forms of mistreatment include:⁴

• Physical abuse (Box 1): occurs when a child is injured (e.g., scratched, bitten, slapped, pushed, hit, burned), assaulted, threatened with a weapon (e.g., knife, gun, other object), or inappropriately restrained.
• Sexual abuse or abusive sexual contact (Box 2): occurs when a child is sexually contacted, forced, or manipulated into sexual activity or observance of sexual activity. A child is legally unable to consent, so any sexual activity with a minor is abuse.
• Psychological or emotional abuse: occurs when a child experiences trauma after exposure to threatening acts or coercive tactics. Examples include withholding love and affection, humiliation or embarrassment, social isolation, and disregarding or trivializing needs.
• Neglect: occurs when the parent or legal guardian fails to provide for a child’s basic physical, emotional, social, or educational needs or fails to protect the child from harm. Examples include not providing adequate nutrition, hygiene, clothing, shelter, or access to necessary health care or education or failure to prevent exposure to unsafe activities and environments.
• Abandonment: occurs when the parent or legal guardian willfully deserts a child or leaves a child unsupervised who is physically or developmentally unable to provide self-care.

There are several factors that place children at higher risk for being abused. Although child abuse crosses all socioeconomic classes, poverty, financial stress, and crowded living conditions increase the child’s risk for abuse. Other factors for the child in hospice care include a patient with developmental delay, chronic illness, and complex health care needs. Factors that may be relevant include families that are isolated or lack support, single-parent families, young parents, parents with multiple stressors, parents with lack of knowledge regarding the patient’s care, and parents with depression.¹

Cultural practices may appear to be a form of abuse. Cultural beliefs and practices must be included in the assessment to determine if abuse is present. Bruising may be due to cupping (the practice of placing heated cups on the back that produces suction as they cool, leaving circular bruises) or coining (the practice of rubbing the skin with a coin up and down the back, leaving vertical, linear abrasions or bruising). These procedures, used in some Asian cultures, may appear as abuse, although no abuse is present. Additionally, bruising and bone and muscle loss associated with terminal illness can sometimes appear as abuse.

When screening for signs of abuse, the reported history of how an injury occurred that is inconsistent with the patient’s physical or developmental abilities or the patient’s injuries should be considered suspicious. Patterned bruises or burns may be from belts, looped electrical cords, cigarettes, or irons.⁶ Abusive burns on the hands, feet, or buttocks have sharp lines of demarcation, lack splash burns, are symmetric, and appear as glove-like or sock-like injuries.⁶ Pediatric patients with abusive head trauma (formerly known as shaken baby syndrome) may have no external signs and subtle clinical manifestations, including an unexplained change in mental status. There may be bruising on the arms or chest from being held while being shaken. As the brain injury gets worse, the patient may experience seizures.³

Barriers to hospice care team members reporting suspected abuse are common. There are significant gaps in funding, policy, research, education, and training to address abuse and neglect. Team members may be uncertain that abuse has occurred and may fear making false reports. The law does not require incontrovertible proof, only a suspicion.⁵ Team members may fear legal retaliation by the family member or caregiver. In reality, many states have laws that can charge a mandated reporter with failure to report.⁵ Reporting involves extra time and energy, and some hospice care team members believe that it may jeopardize their relationship with the family. Some do not want to become involved in family matters, whereas others may fear what will happen to the victim if the abuse is reported. Ongoing staff education and administrative support can decrease these concerns and increase reporting. Mandated reporters are not required to identify the abuser; that is the responsibility of the police and legal system. Even if the mandated reporter suspects the identity of the abuser, the mandated reporter must treat the suspected abuser as any other family member or caregiver because it may be impossible to know for sure until the investigation is performed.

SUPPLIES

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EDUCATION

• Establish a rapport with the patient, family, and caregivers that encourages questions. Answer them as they arise.
• Provide developmentally and culturally appropriate education to the patient, family, and caregivers based on the desire for knowledge, readiness to learn, and overall neurologic and psychosocial state.
• When discussing the prevention of harm to a patient with the family and caregivers, use extreme care and sensitivity. They may easily feel attacked and become defensive. Reassure that the only intention is to support the family and caregivers and protect the patient.
• Educate the family and caregivers on how to manage stress and caregiver strain. Identify issues contributing to this strain, such as increased responsibility, limited support, financial issues, depression, and limited personal time.
• Suggest community resources to reduce caregiver strain (e.g., respite care).
• Educate the family and caregivers in self-awareness, coping skills, and resilience (e.g., support groups).
• Explore the usefulness of other interventions, such as caregiver anger management, social support, and cognitive therapy.
• Assist the patient, family, and caregivers to anticipate the patient’s needs at the end of life.

ASSESSMENT

1. Perform hand hygiene before patient contact. Don appropriate personal protective equipment (PPE) based on the patient’s need for isolation precautions or the risk of exposure to bodily fluids.
2. Introduce yourself to the patient, family, and caregivers.
3. Verify the correct patient using two identifiers.
4. Assess the need for social work, counseling services, and spiritual care for the patient, family, and caregivers.
5. Assess the family and caregivers for knowledge deficits regarding parenting and care of a child with complex health care needs at the end of life.
6. Conduct a full head-to-toe assessment for physical signs of abuse or neglect.

PREPARATION

1. Create an environment of trust that allows conversation regarding the management of expectations, the right to die pain-free with dignity, and understanding of the process of caring, not curing.
2. Create an environment that advocates for the patient’s needs using a holistic interdisciplinary team. Engage the team to assist and support the patient, family, and caregivers during the last phase of life.

STRATEGIES

1. Perform hand hygiene. Don appropriate PPE based on the patient’s need for isolation precautions or the risk of exposure to bodily fluids.
2. Verify the identity of the legal guardian for the patient.
3. Be familiar with and follow the abuse and mandated reporting laws for reporting abuse, both federal and in the hospice care team’s state of employment and the employing organization’s practice.
4. Assess the patient for signs of abuse and neglect during each encounter (Table 1).
5. Assess for caregiver strain during each encounter.

   Rationale: As the patient’s condition deteriorates, this creates greater demands on the family’s time and resources, and the risk for caregiver strain and stress increases. Signs of caregiver role strain may be arguing during conversation, refusing to leave the patient alone with hospice care team members, being evasive, or evading specific questions related to care.

6. Use a nonthreatening tone of voice that is empathetic and not accusatory when assessing the family and caregivers for role strain.

   Rationale: A threatening or accusing tone of voice or attitude from the hospice care team member may cause the patient, family, and caregivers to be defensive and not share information. The family and caregivers may then resist any education efforts the team member attempts to provide.

7. Be aware of the relationship between the patient and family.
8. If the patient discloses abuse, assess the patient without the family present.

   Rationale: The patient may be fearful of the caregiver and is more likely to share information if the caregiver is absent from the interview.

9. Ask questions regarding suspected abuse in a nonthreatening, nonjudgmental manner.

   Use caution not to lead the patient. Pediatric patients may give answers they think the interviewer wants to hear. If possible, to defer an interview so it can be done once, keep questions to a minimum.

10. If discussing issues of abuse with the family or caregivers, be prepared for negative reactions and take precautions, such as having other hospice care team member(s) present.

    Rationale: Abusive family members or caregivers may deny that they mistreat the patient. They may react with anger and may attempt to intimidate, threaten, or yell at the team member and resort to physical violence.

11. Identify situations that may be increasing the family’s and caregivers’ inability to cope, such as lack of outside support; history of violence, substance abuse, or mental illness; or financial strains.
12. Discuss options for community support with family members and caregivers who pose a risk for abusing the patient.
13. In the case of neglect, counsel the family and caregivers on the use of reporting as a mechanism for obtaining additional support if they are feeling overwhelmed.
14. Remove PPE and perform hand hygiene.
15. Document the strategies in the patient’s record.

MONITORING AND CARE

1. Assess the patient’s pain status using a developmentally appropriate pain assessment tool. Consider the patient’s age, condition, and ability to understand.
2. Assist the patient, family, and caregivers with resources to support emotional, psychosocial, and spiritual needs. Encourage them to use available community resources and volunteers.
3. Encourage the patient, family, and caregivers to use the 24-hour telephone line for questions and concerns as they arise.

EXPECTED OUTCOMES

• Hospice care team members report any suspected abuse or neglect to child protective services.
• No indications of abuse or neglect are observed.

UNEXPECTED OUTCOMES

• Patient is left in a known abusive situation with no referral for supportive services (e.g., social services, home health assistance).
• Hospice care team members do not report suspected abuse to child protective services.
• Abuse or neglect continues.

DOCUMENTATION

• Assessment findings for the patient, including physical, behavioral, or disclosure
• Assessment findings for the family, including caregiver role strain
• Patient’s disclosure of abuse and family members’ or caregivers’ names
• Observed nonverbal behaviors of the patient and the family or caregivers that may indicate abuse (e.g., patient cowering when family member or caregiver speaks)
• If suspected abuse was reported, authority or agency notified, and the telephone number and name of the person receiving the report
• Interventions with patient, family, or caregivers about suspected abuse and the patient’s, family’s, and caregivers’ response
• Unexpected outcomes and related interventions
• Education
• Patient’s progress toward goals
• Assessment of pain, treatment if necessary, and reassessment

SPECIAL CONSIDERATIONS

• Young or developmentally delayed pediatric patients may be unable or unwilling to disclose abuse by a parent or caregiver. Maintaining a high degree of suspicion is important to protect vulnerable pediatric patients.
• If unable to arrange an interview with a designated child advocacy center, caution should be used to avoid leading questions. Pediatric patients may say what they perceive the interviewer wishes them to say.

REFERENCES

1. Austin, A.E., Lesak, A.M., Shanahan, M.E. (2020). Risk and protective factors for child maltreatment: A review. Current Epidemiology Reports, 7(4), 334-342. doi:10.1007/s40471-020-00252-3 (Level I)
2. Child Welfare Information Gateway. (2022). Definitions of child abuse and neglect. Retrieved January 20, 2023, from https://www.childwelfare.gov/topics/systemwide/laws-policies/statutes/define/ (Level VII)
3. Clinical Overview. (2023). Abusive head trauma. Retrieved January 20, 2023, from http://www.clinicalkey.com
4. Clinical Overview. (2023). Child abuse and neglect. Retrieved January 20, 2023, from http://www.clinicalkey.com
5. Liu, B.C.C., Vaughn, M.S. (2019). Legal and policy issues from the United States and internationally about mandatory reporting of child abuse. International Journal of Law and Psychiatry, 64, 219-229. doi:10.1016/j.ijlp.2019.03.007
6. Rosen, N.G. and others. (2021). Child physical abuse trauma evaluation and management: A Western Trauma Association and Pediatric Trauma Society critical decisions algorithm. The Journal of Trauma and Acute Care Surgery, 90(4), 641-651. doi:10.1097/TA.0000000000003076 (Level VII)

Elsevier Skills Levels of Evidence

• Level I - Systematic review of all relevant randomized controlled trials
• Level II - At least one well-designed randomized controlled trial
• Level III - Well-designed controlled trials without randomization
• Level IV - Well-designed case-controlled or cohort studies
• Level V - Descriptive or qualitative studies
• Level VI - Single descriptive or qualitative study
• Level VII - Authority opinion or expert committee reports