Stakeholders and advocacy organizations recently collaborated to develop stronger trauma-informed care delivery guidelines that help hospices better address violence, abuse and neglect among serious and terminally ill populations.

The global anti-violence advocacy organization NO MORE in concert with the National Partnership for Healthcare and Hospice Innovation (NPHI) recently unveiled a resource guide to help strengthen hospice providers’ understanding of traumatic experiences and their impact on end-of-life outcomes.

“Understanding that elder abuse and domestic violence are two really distinct and prevalent issues in the older population has really become front and center,” NPHI President Carole Fisher told Hospice News. “These victims often suffer in silence, and we need to pay better attention to their issues.”

The guide, dubbed Breaking the Silence: Addressing Domestic Violence, Elder Abuse and Neglect, is one of many steps needed in developing more supportive structures for patients and their families, according to Fisher. A main aim is to illuminate the prevalence of abuse and trauma and to arm hospice providers with tools to shape more innovative trauma-informed care models, she said.

“This guide was a logical next step in providing this holistic care,” Fisher said. “It was necessary for us to make sure we care for these people and that they die well. [Hospices] do that every day by addressing physical, spiritual [and] emotional issues, but what we recognize collectively is that to know better is to do better.”

Trauma-informed care challenges

Recognition of the training gaps in trauma-informed end-of-life care delivery drove NPHI to establish a guide for providers, CEO Tom Koutsoumpas stated. The resource is intended to help providers prepare to support a swelling aging population with diverse needs, he said.

Five key components of the guide include, according to Koutsoumpas:

1. Clear definitions and descriptions of various types of abuse for effective assessment
2. Identification of common characteristics of both victims and perpetrators of abuse
3. Actionable steps for providers to take to report suspected abuse, and navigate legal and health care systems to ensure patient safety
4. Accessible community resources of organizations that specialize in elder abuse and domestic violence for patient and family support and assistance 
5. Educational resources to recognize and address abuse among patients and providers

“This resource is invaluable for staff members and family caregivers alike, providing vital information and practical steps to take when abuse is suspected,” Koutsoumpas told Hospice News in an email. “[The guide] offers a comprehensive understanding of domestic violence, elder abuse and neglect among seriously ill seniors.”

An estimated 10% of seniors 65 and older in the United States experience some type of physical, psychological or sexual abuse, as well as financial exploitation or neglect each year, reported the U.S. Department of Justice (DOJ).

The actual numbers of victims is more difficult to discern, as many instances of abuse and neglect go unreported. Approximately 1-in-24 incidents occurring among seniors nationwide are not reported annually, a 2020 Elsevier study found.

Calls have grown louder to break down barriers around the silent epidemic of abuse and trauma. Some hospice providers have ramped up training and education around trauma-informed care delivery, but concerns are mounting about whether these efforts are sufficient to address the unmet and unvoiced needs among patients, Fisher indicated.

Addressing patients’ issues tied to experiences of domestic violence and abuse requires a multifaceted approach alongside an in-depth understanding of the physical and emotional toll, said Pamela Zaballa, CEO of the NO MORE Foundation.

“The alarming prevalence of these issues calls for increased awareness, better screening practices and stronger support networks,” Zaballa said in a statement. “It’s time to take collective action to ensure that every individual can live free from fear and harm.”

The alarming prevalence of these issues calls for increased awareness, better screening practices and stronger support networks. It’s time to take collective action to ensure that every individual can live free from fear and harm.

— Pamela Zaballa, CEO, NO MORE Foundation

Addressing the need

Some of the greatest unmet needs of traumatized or abused patients include unresolved distress, increased anxiety and depression, as well as greater risk of cognitive decline, according to Tasha Walsh, CEO of ConnectionsPlus Healthcare + Hospice. Established 40 years ago, the Virginia-based nonprofit provides community-based hospice, advanced integrative care and grief support services across predominantly rural regions.

Family members and caregivers may also have unaddressed and unique bereavement needs compared to others without trauma or abuse experiences, Walsh indicated. These families may be at higher risk of experiencing complicated grief, she said.

“One aspect is training staff on being aware of the risk factors — whether it’s a trauma experience that’s known, such as a veteran with PTSD, or whether it’s someone who experienced sexual abuse as a child, and it was never known,” Walsh said.

Hospice providers need to ensure that staff are well-equipped to understand trauma responses and collaborate on interdisciplinary, individualized care plans, Walsh added. This can involve ongoing educational programs and cultivating supportive organizational cultures and staff resources, she stated.

“It’s respecting that there may be some additional sensitivities and needs that our staff need to be aware of,” Walsh told Hospice News. “It’s a lot of training our teams on trauma competence and things that may activate someone’s trauma response. Education is something we can do on a routine basis. We can [also] have interdisciplinary teams do complex case reviews that help set boundaries and resources in place.”

Navigating trauma-informed care can be a challenging feat for hospice providers, according to Walsh. An important key to address the strain on staff is having employee assistance programs and support structures in place, she said.

Education around trauma, violence and abuse should be integrated into both onboarding and ongoing training practices at a hospice organization, said Dr. Cameron Muir, chief innovation officer at NPHI.

Developing standardized trauma measures as part of a hospice’s patient intake and ongoing assessment practices can go a long way toward strengthened care approaches, Muir stated.

“It’s unfortunately necessary to assume that trauma and abuse are present until proven otherwise, much like we assume that pain is present with the 0-to-10 scale,” Muir told Hospice News. “Trauma screening, assessment and informed care is not an ancillary thing to get trained on. It’s important to teach staff not just the signs and symptoms, but also the great communication and listening skills to create a compassionate and safe space that validates those experiences. These are wounds that need a healing framework to help address.”

The plight to increase awareness and improve quality has only reached the tip of the iceberg, according to Fisher.

Greater attention and training pathways are needed to support hospices as they move the needle forward, she stated.

“We need to normalize this issue and bring it out of the closet,” Fisher said. “It’s important to get people the resources they need to feel good about themselves and help people die well feeling heard, supported and not isolated in these experiences of violence and abuse. Being a voice empowers us not to keep this to ourselves and that it doesn’t define us, it’s just a chapter of life.”

We need to normalize this issue and bring it out of the closet. Being a voice empowers us not to keep this to ourselves and that it doesn’t define us, it’s just a chapter of life.

— Carole Fisher, president, National Partnership for Healthcare and Hospice Innovation (NPHI)