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    • AAHPM |  Publications |  AAHPM Quarterly | Fall 2024 |  How Can Hospice and Palliative Care Providers Address Elder Abuse?

    How Can Hospice and Palliative Care Providers Address Elder Abuse?

    Larry Beresford

    In June of 2024, the National Partnership for Healthcare and Hospice Innovation (NPHI), a professional member organization representing established nonprofit hospice and palliative care providers, issued a white paper and resource guide called “Breaking the Silence: Addressing Domestic Violence, Elder Abuse and Neglect.” This release launched a campaign aimed at bringing greater attention to the widespread, underappreciated, and underreported epidemic of elder abuse—in all of its forms but for hospice and palliative care patients in particular.

    The launch was held in conjunction with World Elder Abuse Awareness Day, June 15, created at the United Nations and observed around the world. Collaborating on NPHI’s project is the NO MORE Foundation, which is dedicated to ending domestic and sexual violence through allied organizations, international chapters, and grassroots activities. “Breaking the Silence” includes resources on elder abuse and insights into its prevalence and the various forms it takes while encouraging providers to screen for and respond to suspected abuse.

    Elder abuse is defined as an intentional act or failure to act that causes or creates a risk of harm to an older adult. It can take many forms, according to the Centers for Disease Control and Prevention, including physical, sexual, emotional/psychological, and financial abuse, along with neglect. A sixth category includes fraud and abuse perpetrated by the healthcare provider. Abuse is a trigger for mandated reporting by hospice and palliative care providers, among other health professionals, typically to the local Adult Protective Services (APS) agency.

    What do hospices see regarding this kind of abuse? Several hospice administrators and clinicians contacted for this article say actual out-and-out elder abuse as it is traditionally understood is less common than the range of challenging, chaotic, dysfunctional, difficult situations in the lives of their patients, in their chosen care setting, and with their designated care provider.

    “If people think of elder abuse as an older person getting beat up or slapped or hit, we’re not seeing a lot of that,” said Tasha Walsh, LCSW PCC, CEO of ConnectionsPlus Healthcare + Hospice in Lexington, VA. “We’re seeing more elder neglect. And we’re often on the front lines dealing with such neglect and with dysfunctional family situations that are just not working.”

    These dysfunctional situations could be triggered by poverty, substandard housing, drug use, mental illness, posttraumatic stress disorder and other traumas, prior abuse or other long-standing family conflicts, or a host of other challenges, even when the patient and caregiver are doing the best that they can to manage. But the dysfunction makes it hard for the team to deliver on its mission of facilitating a safe, peaceful final chapter of life for the enrolled patient and their family.

    Abuse is often done by people who may mean well, but just lose it. “But it’s still abuse, and I think a lot of it could be prevented,” said Laura Mosqueda, MD AGSF FAAFP, professor of medicine at the University of Southern California Keck School of Medicine, advisor to the National Center on Elder Abuse, and an authority on elder abuse and care of older adults.

    For hospices, abuse and dysfunction can present similar challenges in trying to serve patients safely and manage their terminal illness. And the typical response to these situations—which is to call APS—is also the same. But some experts wonder if elder abuse is getting the full attention it deserves from hospice and palliative care providers.

    A Silent Epidemic

    “Our white paper calls this a silent epidemic,” said Cameron Muir, MD, a palliative care physician and consultant and lead author of NPHI’s report. It is known that between 2002 and 2016, more than 643,000 older adults were treated in an emergency department for nonfatal assaults, and more than 19,000 homicides occurred in this population.1 Obviously, Dr. Muir said, the problem is more widespread than many realize. “We don’t know what we don’t know, and it’s a silent epidemic until we take it seriously and acknowledge that it is highly prevalent.”

    “We don’t know what we don’t know, and it’s a silent epidemic until we take it seriously and acknowledge that it is highly prevalent.”

    Past abuse in the lives of hospice and palliative care patients and/or their family caregivers is also relevant but not much talked about. A history of trauma in many patients may call for a trauma-informed therapeutic response. And what if it’s the hospice worker who brings a history of abuse—such as experiencing domestic violence in their own lives?

    Taking elder abuse, domestic violence, and neglect seriously means appreciating that we can put our colleagues and ourselves, along with our patients and families, at risk “if we don’t acknowledge that domestic abuse and violence may have been happening in this home 20 minutes before we got there,” Dr. Muir said. “If the hospices you are talking to say they don’t think actual elder abuse is as much of a problem for their patients, they are not acknowledging the data that exist or the safety needs of patients, families, and their own staff.”

    Reporting Is Mandated

    Just about everyone who provides health care for older adults is a mandated reporter of suspected abuse, Dr. Mosqueda noted. Making a report to APS rarely fixes the problem. “Still, for the person lying in feces or urine or being yelled at, we forget that any real solution involves getting more resources, talking to the patient and family, talking to other people.” And the way to initiate all of that is to make a report to APS.

    Health providers can be trying so hard to understand the challenges the family is going through that they fail to act on suspected abuse, Dr. Mosqueda said. They can miss that something bad might be going on in the home because they are so busy trying to build a working rapport with the patient and family.

    Sometimes team members are discouraged from making a report to APS because their employer doesn’t want to get a reputation among referral sources for making these reports or to jeopardize, for example, a relationship with a long-term care facility where abuse might be suspected. “We need to be reminded of our ethical and moral duty to the patient,” Dr. Mosqueda said.

    “APS won’t pull patients out of their home against their will, if they have the capacity to make decisions,” Dr. Mosqueda explained. “But making a report is still mandated. You don’t ask for their permission.” She said she emphasizes to patients and families that making a report doesn’t mean there’s any plan to remove the patient from the home, but it’s legally required and an opportunity to try to get more help involved.

    According to Dr. Mosqueda, “Sometimes you see a situation coming that you can anticipate. Pay attention to your Spidey-sense. If something starts to seem like it’s going off the rails, don’t wait for the abuse to happen.” Maybe call a family conference or invite someone from APS to meet with the team. It’s also important to talk to the patient without family present.

    Is Reporting to APS Best?

    Dr. Muir said he is not comfortable viewing APS as the automatic answer to suspected abuse. “What we recommend is a referral to the National Domestic Violence Hotline or similar organization [see resource list at the end of this article]. My own experience is that APS often has limited options available to them and isn’t always helpful. They see the situation, and they say, ‘Sorry, this person seems to accept living in this situation. That’s just the way it is. Nothing is going to change.’”

    Providers can make a lot of excuses for not reporting, even though it’s mandated for them, said Carla Perissinotto, MD MHS, a professor in the division of geriatrics at University of California San Francisco (UCSF). “I say that pretty firmly because it astounds me how much elder abuse is actually underreported. There is a hesitancy often with the elderly that you would not find with at-risk children. And I saw that directly in my work as a hospice medical director for different agencies. I think what this partially stems from is a lack of understanding of what elder abuse is,” she said.

    “We’re talking about a dependent older adult, someone with a disability, someone who is dependent on others for their care. And all kinds of abuse go on out there. There’s also self-neglect, which we see a lot. And it can be really hard to tease out. But I think the average clinician needs to remember that it’s not our job as hospice professionals or other clinicians to determine whether there’s abuse or not. It is our job to report when something looks off and we don’t know what’s going on.”

    That doesn’t require assigning blame, Dr. Perissinotto said. But who else is going to speak out about the problems? “What we are trying to say is that this patient looks like they’re being harmed or potentially harmed, and we need a second set of eyes to look into this. Whether it’s not turning the patient, whether it’s not treating their pain, whether it’s ignoring their physical complaints, whether it’s restraining someone against their will, intent is not part of the definition of elder abuse. So lack of intent should not be the reason why you don’t report,” she said. “Trust your gut. When something doesn’t feel right, it’s usually not right.”

    Dr. Perissinotto has been active on the California Elder and Disability Justice Coordinating Council Steering Committee for the State of California and has worked with APS a lot. She said it’s important to appreciate that reporting requirements vary state to state. With cognitively impaired people, it can be hard to know what’s true. The patient might not be a reliable narrator. “But that’s what makes people more vulnerable and easier for others to prey on.”

    Ultimately, she said, it’s about the basic principles and oaths taken by physicians, including first do no harm. “I think it’s worth reminding ourselves that as hospice physicians we are in a very special time in people’s lives where they trust us, and we witness things that other people don’t witness. And that makes the stakes very high.”

    “I think it’s worth reminding ourselves that as hospice physicians we are in a very special time in people’s lives where they trust us, and we witness things that other people don’t witness. And that makes the stakes very high.”

    Dr. Perissinotto posed: What keeps you up at night? “Have you really exhausted all options? How can we think outside the box? Is this family truly acting in the patient’s best interest? These are questions we all should be asking.”

    Is the Patient Truly Informed?

    The patient’s right to informed consent if they say they want to stay in problematic circumstances takes providers back to the basics of medical ethics, Dr. Perissinotto said. “Does the person truly understand the risks and benefits of their living situation? And if the answer is yes, then you become a harm reductionist. But there is still a question of whether they have the capacity to understand. I would say to your readers that we often skip true capacity assessments because we assume that someone understands the risks and benefits of their living situation.”

    For Ashwin Kotwal, MD, assistant professor of medicine in the division of geriatrics and coleader of the Social Connections and Aging Lab at UCSF, questions about abuse and neglect are complicated, distressing, and lacking easy answers. “But that’s one reason why palliative care has a big role in this issue, because we can draw on expertise from multiple disciplines. We actually get into people’s homes, while most of health care doesn’t have any idea what’s going on in the home.”

    Dr. Kotwal said earlier referrals to hospice care can help, because it’s harder to get things done when the length of stay is short. “I tend to err on the side of earlier referral to hospice for socially complicated situations.” He also suggests that a concurrent model of conventional care and hospice, as is offered in the VA where he practices, can help encourage earlier referrals.

    Who are the Experts?

    How can this subject get the attention it deserves from hospice and palliative care teams? Dr. Muir said his experience as past president of AAHPM suggests to him that many of his colleagues don’t realize that elder abuse is as significant of a problem as it actually is—”truly a ‘silent epidemic.'”

    In his work on the Innovation Lab at NPHI, whatever is the clinical topic at hand, Dr. Muir tries to pull in internal subject matter experts from the coalition’s member organizations. And usually at least five or 10 experts come forward. “In this case, no one emerged with any practice of any sort in this area, let alone best practices. Once I reviewed the literature, I wrote NPHI’s white paper because it became essential to share the significance of what I was learning.”

    How can hospice and palliative care organizations address these complex issues? Start with educational materials and resources, Dr. Muir said. “There are 1- and 2-hour trainings for medical professionals on domestic abuse screening, assessment, and referral. We recommend that all hospice providers get this education.” There is also clear data to support that routine screening for domestic violence and elder abuse is both safe and useful.

    “There are 1- and 2-hour trainings for medical professionals on domestic abuse screening, assessment, and referral. We recommend that all hospice providers get this education.”

    “Next, know your local resources. APS obviously is one,” he said. Perhaps meet with APS staff at a time that doesn’t involve an active case so you can talk about how to work more closely together. Also, know your community’s crisis intervention resources, including safe houses for women who are victims of abuse, and be an activist for such services if they don’t currently exist. “If you are screening and identify abuse, you’ve got to be able to help people leave their current environment and get into a safe space,” Dr. Muir said, adding that advocacy is important. That could mean asking for more resources, even for the treatment of domestic violence and elder abuse as the “sixth vital sign.”

    Gerontologist Jason Burnett, PhD, who directs the Texas Elder Abuse and Mistreatment (TEAM) Collaboratory at the University of Texas Health Science Center at Houston McGovern Medical School, is now doing research on elder mistreatment and neglect, including evaluating interventions. He recommends a new evidence-based approach called the RISE (Repair Harm, Inspire Change, Support Connection, Empower Choice) model for prevention of elder abuse and self-neglect. The RISE Foundation recently expanded its outreach into several locations across North America that are in various stages of implementation of this model.

    Abuse at the Grassroots Level

    Tasha Walsh said the clinical staff at ConnectionsPlus, based in rural Appalachian Virginia, are required to have abuse-and-neglect training upon hire and once a year thereafter.  “The training we use for abuse and neglect is good. And we have APS come and do a presentation for our staff every year. We’ll also do updates that we weave into our interdisciplinary team meetings when these cases come up,” she said.

    “In terms of the assessments we do, I’m not sure that we need a separate risk-of-abuse assessment process. But I do feel it is something that should be incorporated into basic safety assessments that all hospice providers should do. You know, are there guns in the home? Is there a history of domestic violence?” she said.

    “I’m taking a deep breath as I talk to you because I just came from a conversation with one of our social workers about a patient we’re currently seeing whose daughter isn’t providing him with the care that he needs,” Walsh said. “It’s a very sad situation. We have made an APS referral, and we are trying to find a placement for this gentleman so that he can get the care he needs.”

    But this patient is not eligible for Medicaid—due to a technicality about property he owned. “He’s incapacitated and can’t make decisions for himself. His daughter is the only one around. There’s a question of whether she’s unwilling or unable—which may not be a helpful distinction. But it’s absolutely neglect,” Walsh explained.

    “We’re going to refer to APS, and they are a resource, and they might be helpful. But it’s just part of the mix of complexities in this case. And honestly, the kind of help that they’re able to provide in this situation may not really help.” In another recent case, the hospice referred a patient to APS, which declined to get involved because the patient was under 65 years of age and thus ineligible.

    For hospices, when you’re aware of a difficult situation and you’re doing everything you can, everything you can sometimes still isn’t enough, Walsh said. “There are no resources in this community for individuals like these to get help. And that’s where I get concerned for my staff, just the moral distress they feel from this situation. They’re doing everything they can and it’s still not enough to make the situation better—for the patient to get the care that’s going to keep them safe and comfortable.”

    Reference

    Logan JE, Haileyesus T, Ertl A, Rostad WL, Herbst JH. Nonfatal assaults and homicides among adults aged ≥60 years—United States, 2002-2016. MMWR Morb Mortal Wkly Rep. 2019;68(13):297-302. doi:10.15585/mmwr.mm6813a1.

    Larry Beresford is a medical journalist in Oakland, CA, with a strong interest in hospice and palliative care.

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