Breaking the Silence: The Mounting Need for Trauma-Informed Hospice Care
By Holly Vossel | May 3, 2024
Traumatized and abused hospice patients and providers often experience an array of lingering physical, emotional and psychological effects that can fall into a silent abyss of unmet needs.
Breaking down the barriers to stronger trauma-informed end-of-life care requires heightened awareness, legislative action and improved care delivery approaches. Some hospice providers have training and education around trauma-informed care delivery, but concerns are mounting about whether these efforts are sufficient to address the unmet and sometimes unvoiced needs among patients and staff alike.
“Little is known about the epidemiology of trauma among persons approaching the end of life and how prior life trauma is related to these different domains of end-of-life well-being,” Dr. Ashwin Kotwal, assistant professor at the University California San Francisco, said during the American Academy of Hospice and Palliative Medicine and Hospice & Palliative Nurses Association assembly.
Epidemic of trauma, violence, abuse
Examining trauma experiences over the course of a lifetime, is a potentially good way of providing a more complete picture of the prevalence and lasting health implications, Kotwal said.
Many seniors have experienced some form of trauma or abuse in their lifetime. Physical, sexual and emotional abuse are the most common types that seniors experience. Other types of elder abuse include neglect, medication mismanagement, financial exploitation and forced confinement (restraint or isolation).
More data has become available in recent years around the prevalence of different types of abuse and trauma. Roughly 10% of seniors 65 and older nationwide are victims of some type of abuse each year, the U.S. Department of Justice (DOJ) reported. Caregiver neglect represents 5.1% of these cases, with psychological and physical abuse impacting 4.6% and 1.6% of seniors, respectively.
Determining the actual volume of abuse and violence is difficult, as many cases go unreported. The DOJ report estimated that 1-in-57 cases of caregiver neglect are not reported each year, along with a 1-in-20 rate of unreported instances of physical abuse among seniors.
These statistics point to a staggering level of trauma, said Carole Fisher, president of the National Partnership for Healthcare and Hospice Innovation (NPHI). Hospices need to operate under the assumption that they’re caring for a significant number of patients who have been abused at some stage of their life, she stated.
“Violence, abuse and trauma are almost like this hidden silent pandemic, but this is a pervasive issue for [hospice providers] and their staff,” Fisher told Hospice News in an Elevate podcast episode. “It’s understanding that a large majority of abuse victims are not going to speak out. They may be uncomfortable talking about it with their provider care team. It’s necessary that we continue to educate on these issues and recognize that they exist.”
Hospices must also take into account that the prevalence of violence, abuse and trauma may be similar among their workforce, Fisher added.
Case in point, an estimated 1-in-4 women worldwide have experienced some form of violence in their lifetime, as well as 1-in-9 men, reported the global advocacy organization NO MORE.
Additionally, home health and hospice workers face higher safety risks and a myriad of unique challenges compared to other health care providers.
Research has found that workplace violence and abuse proliferates among community-based hospice employees. A 2015 study analysis published in the journal BMC Public Health found that nearly two-thirds of the female home care workforce experiences some type of workplace violence annually.
More than half (51.5%) of home care workers overall have experienced verbal aggression, while 24.7% encountered instances of workplace violence, the analysis found. Sexual harassment and aggression impacted 27.6% and 12.8% of these workers, respectively.
“It’s a paradigm shift to assume that this is present, and therefore we are screening for the domains and elements of abuse in standardized tools and bring it forward as an unfortunately highly prevalent component of both the patient and caregiver, and our workforce,” Dr. Cameron Muir, chief innovation officer at NPHI, said during the Hospice News podcast.
Challenges in providing trauma-informed care
Calls are growing louder to expose and address the silent epidemic of violence and abuse, Fisher indicated. The larger conversations and societal views around violence, abuse and trauma have shifted toward building awareness, but greater attention is needed to bring about more meaningful change, she said.
“We’re making great strides in talking about this important issue,” Fisher told Hospice News. “But we have to really unravel these deep-rooted societal taboos about speaking out and removing judgment on the victim. It’s important that we help people not be defined by their situations that are an unfortunate part of their whole. It’s not a life sentence, it’s part of the journey of who someone is.”
We’re making great strides in talking about this important issue. But we have to really unravel these deep-rooted societal taboos about speaking out and removing judgment on the victim … It’s not a life sentence, it’s part of the journey of who someone is.– Carole Fisher, president, National Partnership for Healthcare and Hospice Innovation
Experiencing violence, trauma or abuse at any point in a lifespan can come with long-term effects. Abuse can take a toll on physical and mental health deterioration, and result in social issues, diminished quality of life and increased mortality rates, the DOJ report found.
Victims are more likely to have increased incidence of depression, anxiety and mental health disorders, and often carry lingering feelings of aggression, rage, guilt and shame, other studies have found. Research shows people who have had traumatic experiences can also have increased risk of heart disease, nervous system and memory issues, eating and substance abuse disorders and complex post-traumatic stress disorder (PTSD).
Traumatic, violent and abusive experiences can impact the patient and provider relationship in a multitude of ways, including negatively affecting outcomes, according to Andrea Devoti, executive vice president at the National Association for Home Care & Hospice (NAHC).
“These [experiences] really put a barrier up to that wonderful therapeutic relationship between the hospice staff and the caregiver group with the patient,” Devoti told Hospice News. “It makes it difficult to really get good, solid information and assess what the situations and needs are if there’s potential physical or sexual abuse, or someone is experiencing PTSD. It also impacts providers if they fear their own safety.”
Victims battle an ever-present landmine of potential triggers as they reach the end of their lives. These can go undetected by a hospice provider who may unknowingly be adding to a patients’ stressors, Devoti stated.
Developing consistent training policies and procedures is a key to curbing safety risks among patients and employees, she said. Devoti helped lead NAHC’s workplace violence prevention guidelines for home health and hospice organizations.
Increasing education on the various forms of abuse and the signs and effects of trauma is another important step to preventing adverse impacts in end-of-life care delivery, she stated.
But it can be challenging to train staff on how to assess whether experiences of trauma and abuse exist in a home setting, according to Devoti. The environmental and behavioral signs can range from subtle to substantial, and navigating these situations can take almost an “investigative” approach and diligent awareness, she said.
These [experiences] really put a barrier up to that wonderful therapeutic relationship between the hospice staff and the caregiver group with the patient.– Andrea Devoti, executive vice president, National Association for Home Care & Hospice
Trauma-informed end-of-life care delivery also involves a deep focus on sensitivity training, according to Dr. Ross Cleveland, pediatric palliative care physician at Boston Children’s Hospital.
“There can be a lot of judgment thrown around without any real hard evidence and people can make assumptions about what is or isn’t happening,” Cleveland told Hospice News. “Elevating these discussions and bringing them out in the open is how we find where those gaps exist and what is actually happening to better support families.”
Counterpoints and legalities
Hospices have taken greater steps toward improved trauma-informed end-of-life care. Ramping up training and education programs has been a key to caring for patients and employees with unique needs impacted by trauma and abuse.
Among the training components to instill is being aware of the lasting trauma effects that can be inadvertently triggered during patient care, Devoti said. Providers may be causing unintentional harm by using certain language when asking questions around emotional or physical pain and symptoms, she indicated.
Having policies in place for patient admission assessment, documentation practices around suspected trauma and abuse experiences, and training staff on legal and regulatory guidelines are additional aspects to include in trauma-informed care delivery, Devoti stated.
In addition to providers’ efforts, changes in regulations and policies have heated up as well. Increased safety concerns among home health and hospice workers have sparked legislative action in some states.
Lawmakers in Connecticut and Vermont have recently introduced legislation aimed at protecting hospice and home health workers. The Vermont legislation relates to mental health response service guidelines and social service provider safety, which include community-based hospice providers and home health workers. A bill in Connecticut proposed to broaden the scope of background checks for state and public agency employees to include suspected criminal activity and ongoing investigations.
However, some stakeholders worry that the laws like these may impact care continuity among vulnerable, homebound terminally ill populations lacking end-of-life support.
A main concern is that patients in homes with suspected safety risks would be prohibited from receiving visits from interdisciplinary staff during ongoing investigations. This could lead to patients potentially dying without access to hospice support with a range of unmet emotional, physical and psychosocial needs, according to Lindsey Owen, executive director of Disability Rights Vermont.
Without home-based hospice care, these patients are at greater risk of hospitalization or entering a facility-based setting, which can negatively impact goal-concordant services while also driving up health care costs, Owen indicated.
“We’re not helping the situation if we don’t give people the means and the ability to advocate for services in their home or in their communities where they can best get their needs met and most cost effectively as well,” Owen said in a recent Vermont House of Representatives hearing.
Striking a balance between awareness of the issues and actions to address them will include significant understanding of the various facets of emotional, physical and psychosocial tolls of trauma, according to Muir.
“Those past experiences, those traumas, for a person informs the care that they need to receive,” Muir told Hospice News. “Many people carry emotional scars from traumatizing experiences, and so trauma-informed care reframes the relationships, because it’s the essence of the biopsychosocial, spiritual model that we teach in hospice. We act as partners in healing.”
Many people carry emotional scars from traumatizing experiences, and so trauma-informed care reframes the relationships, because it’s the essence of the biopsychosocial, spiritual model that we teach in hospice.– Dr. Cameron Muir, chief innovation officer, National Partnership for Healthcare and Hospice Innovation