A Silent Epidemic: Trauma Among Hospice Patients, Staff

By: Holly Vossel | Hospice News

Many seniors have experienced some form of trauma or abuse in their lifetime, which can carry impacts for those both delivering and receiving hospice care.

More data has become available in recent years around the prevalence and different types of abuse and trauma on global and national scales.

This is the first of a two-part series that will examine the challenges that hospice patients and employees face related to abuse and trauma experiences and how providers respond.

Having a better understanding of these trends and their impacts can help hospices improve quality outcomes and staffing support for individuals with these experiences, according to Carole Fisher, president of the National Partnership for Healthcare and Hospice Innovation (NPHI).

“The stats on domestic violence and abuse are pretty overwhelming, and that’s in general populations,” Fisher told Hospice News. “When we dig into our country’s most vulnerable serious and terminally ill patients, previous abuse is pretty prevalent and often not talked about, and that suffering can linger with unresolved emotional issues. That’s on top of instances of hospice providers caring for these patients every day that also might be dealing with abuse in their past or who are being abused.”

History of abuse prevalent among seniors

Physical, sexual and emotional abuse are the most common types that seniors experience, which aligns with the general population. Other types of elder abuse include neglect, financial exploitation and forced confinement (restraint or isolation), according to a report from the National Council on Aging.

The interdisciplinary nature of hospice services can help aging populations address the impacts of abuse and trauma as they approach the end of life, according to Fisher.

“Domestic violence and abuse crosses all boundaries of gender, age, race and socioeconomic status,” Fisher said. “That can wear down on people physically, emotionally and spiritually. That’s why hospice can be so important from its holistic approach to help address all those domains, to ease stress and strain and address unresolved trauma for these victims. It’s not just about their health, it all ties back to their dying experience.”

Domestic violence and abuse crosses all boundaries of gender, age, race and socioeconomic status. That can wear down on people physically, emotionally and spiritually. That’s why hospice can be so important from its holistic approach to help address all those domains, to ease stress and strain and address unresolved trauma for these victims.

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

An estimated 1-in-6 seniors 60 and older have experienced some form of abuse in the last year worldwide, according to a 2022 report from the World Health Organization (WHO).

Rates in the United States are high among those in the same age group, with 1-in-10 seniors abused annually, or nearly five million Americans, a National Institute of Justice study found.

These data represent the known cases of abuse, but the actual numbers are difficult to determine because many incidents go unreported, according to Fisher.

An estimated 1-in-24 cases of elder abuse and neglect go unreported annually in the United States, a 2020 Elsevier study found.

“It’s overwhelming to talk about for people towards the end of life when they are so sick and they’re feeling more compromised,” Fisher said. “They often don’t want to have that conversation. It can carry so much guilt and be sort of a ‘Pandora’s box’ of issues to open. And for the millions of abused people who are caring for the sickest, they may need real help in their current situations or help dealing with the past. It’s creating a safe space for people working in and receiving hospice to feel comfortable speaking up about what they’re dealing with and recognizing the impacts of those experiences of trauma or violence or abuse. It’s meeting that need with support.”

Understanding the effects of abuse, trauma

Hospice leaders should understand how trauma and abuse can impact their staff and patients, according to Dr. Balu Natarajan, chief medical officer of AccentCare. Digging into the data around abuse can help hospices understand how to recognize signs of trauma occurring in patients and staff and inform their approaches to training and support, he indicated.

“There’s so much to unpack at the end of life when someone is dealing with the progression of a disease and escalating illness. Death itself is scary enough without some of these traumatic experiences as part of a person’s identity,” Natarajan told Hospice News. “Trauma can be very nuanced. That’s really where the journey begins in developing a fundamental place to start, to build a space of psychological safety and focus on how we can make people feel more comfortable about sharing what has happened and ensuring security of that patient and team member. It’s collectively committing to looking into these things and how they impact mental health.”

Trauma can be very nuanced. That’s really where the journey begins in developing a fundamental place to start, to build a space of psychological safety and focus on how we can make people feel more comfortable about sharing what has happened and ensuring security of that patient and team member.

— Dr. Balu Natarajan, chief medical officer of AccentCare

Psychological abuse was reported by nearly 33% of health care staff in senior care settings across the globe and reported by 11.6% of adults receiving care in community-based settings, according to the WHO report. Physical abuse was reported by 2.6% of patients and 9.3% of staff, while financial abuse and neglect occurred among 6.8% and 4.2% of patients, respectively.

Being aware of the prevalence of varied forms of abuse among patients and staff is part of building systems of improved supportive resources, according to Lara McKinnis, professional development specialist at Teleios Collaborative Network. McKinnis also has a private therapy practice and previously served as the director of patient and family support and grief services for the North Carolina-based hospice provider Four Seasons.

Recognizing how trauma can shape a person’s thoughts, feelings and actions is a crucial step for health care providers, she said. Hospices need to understand the many ways that trauma triggers can be encountered by staff and patients alike, McKinnis stated.

“It’s needing to understand what triggers trauma responses if you’re working with another human,” McKinnis told Hospice News. “When we start looking at multi-layers of trauma and the patients, families and workers impacted, it’s seeing the moral and emotional injuries of both a big event and repeated events. It’s looking at the darkness of that trauma and also how it was survived and ways that support can help people. We can impact health care experiences negatively if we aren’t mindful of trauma-informed care delivery approaches and also staff’s ability to cognitively process their own trauma and collaborate on care.”

Demographically, women are nearly twice as likely to be victims of violence and abuse than males. Data is sparse on abuse among transgender or non-binary individuals.

About 1-in-4 women compared to 1-in-9 men experience some form of violence from their partners in their lifetime, according to a report from NO MORE. The advocacy organization aims to educate and end domestic violence and assault. Roughly a third of women have experienced sexual violence, versus 1-in-6 men, NO MORE reported.

Females make up a large proportion of both hospice patients and the workforce serving them. Women represented more than half (52.7%) of hospice patients in 2020, the National Hospice and Palliative Organization (NHPCO) reported.

Females also represent roughly three-quarters of health care workers nationwide, and make up a large contingent of the more than 2.4 million registered nurses in the United States, according to a U.S. Census Bureau report. About one-third of clinicians are women, the report indicated.

“This is a time to call for action and safeguard the well-being of women against the effects of violence and abuse, especially as more women are aging and live alone,” Fisher said. “It’s giving them a voice and a way to untangle these issues of anxiety, depression, shame, remorse, guilt and fear. It’s mostly women providing this senior care, and it’s mostly them being impacted by abuse and trauma.”

A Silent Epidemic: Domestic Violence, Trauma Among Hospice Patients, Staff – Hospice News