Analyzes the role of the social worker in helping to plan end-of-life care. Include possible consideration of palliative care, euthanasia, hospice ca

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Journal of Social Work in End-of-Life & Palliative Care

ISSN: (Print) (Online) Journal homepage: https://www.tandfonline.com/loi/wswe20

Practice Considerations for Trauma-Informed Care at End of Life

Elizabeth S. Ricks-Aherne, Cara L. Wallace & Nancy Kusmaul

To cite this article: Elizabeth S. Ricks-Aherne, Cara L. Wallace & Nancy Kusmaul (2020) Practice Considerations for Trauma-Informed Care at End of Life, Journal of Social Work in End-of-Life & Palliative Care, 16:4, 313-329, DOI: 10.1080/15524256.2020.1819939

To link to this article: https://doi.org/10.1080/15524256.2020.1819939

Published online: 22 Sep 2020.

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Practice Considerations for Trauma-Informed Care at End of Life

Elizabeth S. Ricks-Ahernea , Cara L. Wallacea , and Nancy Kusmaulb

aSchool of Social Work, College for Public Health and Social Justice, Saint Louis University, St. Louis, Missouri, USA; bSchool of Social Work, University of Maryland Baltimore County, Baltimore, Maryland, USA

ABSTRACT Trauma is widespread, and its symptoms can adversely impact wellbeing at end of life, a time when hospice seeks to maxi- mize quality of life. This article reviews research on trauma at end of life, provides an overview of trauma-informed princi- ples, and explores possibilities for applying trauma-informed care through an illustrative case study of a patient at end of life. The case discussion applies findings from the literature using Feldman’s Stepwise Psychosocial Palliative Care model as a roadmap. As shown in the case study, trauma-related symptoms may complicate care, making it an important sub- ject of clinical attention for interdisciplinary hospice team members. As part of this team, social workers are particularly well suited to provide more targeted interventions where indi- cated, though all members of the team should take a trauma- informed approach. Lastly, this article reflects on the need for organizations to take a systems-level approach when imple- menting trauma-informed care and suggests implications for practice through a universal approach to trauma and the need for trauma-specific assessments and interventions at end-of-life, along with areas for future research.

KEYWORDS Hospice; palliative care; social work; trauma

Patients at end of life are more likely than the general population to have experienced trauma either in their past or more recently, due to medical interventions and other experiences related to their life-limiting diagnosis (Ganzel, 2018). The risk for having been exposed to at least one traumatic event increases with age, as does the probability that a person may experi- ence multiple traumatic events (Ramsey-Klawsnik & Miller, 2017), making trauma an important potential factor for older adults and people at end of life. Older adults (age 65 or older) constitute approximately 80% of hospice patients and estimates show that about 70–90% of people in this age range have experienced a prior traumatic event (Ganzel, 2018). Unmitigated trauma-related symptoms of intrusion, avoidance, negative alterations in

CONTACT Cara L. Wallace [email protected] School of Social Work, College for Public Health and Social Justice, Saint Louis University, St. Louis, Missouri 3550, USA. � 2020 Taylor & Francis Group, LLC

JOURNAL OF SOCIAL WORK IN END-OF-LIFE & PALLIATIVE CARE 2020, VOL. 16, NO. 4, 313–329 https://doi.org/10.1080/15524256.2020.1819939

cognitions and mood, and hyperarousal can adversely impact what many people consider a “good death” (Feldman, 2011). These trauma symptoms might result in reduced social supports, challenges in communication with and trust of healthcare providers, complications in the process of life review, barriers to acceptance of death, increased emotional distress, exacer- bation of pain symptoms, and decreased overall well-being (Feldman, 2011; Ganzel, 2018). Given how common traumatic experiences are across the human life

course and the negative impacts that trauma-related symptoms can have at end of life, social workers should be trained in trauma-informed approaches, trauma assessment, and trauma intervention (Levenson, 2017; Strand et al., 2014). This paper adds to literature by establishing trauma as a clinical consideration at end of life. Though it is not practical to expect that hospice workers will all become trauma experts, understanding a trauma-informed approach (described in greater depth below) in this set- ting is particularly important and will allow them to respond to trauma- related distress that may arise at end of life. Hospice and palliative care organizations are generally trained in providing team-based, person-cen- tered care, making them well positioned to provide generalist, trauma- informed care. Following a review of literature, definition of trauma, and description of trauma-informed care, this article applies current knowledge to an illustrative case example (based on a real case with names and identi- fying details changed to protect privacy), followed by a discussion of prac- tice implications. Additionally, this article provides insights from other care settings where a trauma-informed perspective is already being used.

What is trauma?

Definitions of trauma vary in scope. The U.S. Substance Abuse and Mental Health Services Administration (SAMHSA, 2019), describes trauma as “an event, series of events, or set of circumstances that is experienced by an individual as physically or emotionally harmful or life threatening and that has lasting adverse effects on the individual’s functioning and mental, phys- ical, social, emotional, or spiritual well-being." This definition includes but is not limited to full-threshold post-traumatic stress disorder (PTSD). This is important because, among older adults, the presence of sub-syndromal trauma-related symptoms may adversely impact quality of life, with some literature raising the question of using a lower diagnostic criteria threshold for PTSD in older adults (Reynolds, Pietrzak, Mackenzie, Chou, & Sareen, 2016). Furthermore, each person’s perspective on a trauma experience is subjective, and their coping thresholds are unique (Ramsey-Klawsnik & Miller, 2017).

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The expression of trauma-related symptoms varies over the life course and can include delayed onset symptoms, symptom remission, symptom recurrence, and symptom exacerbation (American Psychiatric Association (APA), 2013). Experiences common among older adults and those at end of life, such as shifts in physical or mental health and cognitive impair- ment, are often associated with symptom variation (APA, 2013; Davison et al., 2016; Feldman, Sorocco, & Bratkovich, 2014; Glick, Cook, Moye, & Kaiser, 2018; Hiskey, Luckie, Davies, & Brewin, 2008; Reynolds et al., 2016). Not all people who experience traumatic events necessarily develop PTSD, with lifetime incidence in the United States estimated to be 8–9% (American Psychiatric Association, 2013). Even trauma-related symp- toms that do not meet PTSD diagnostic criteria can cause clinically signifi- cant distress, adversely impacting quality of life and ability to receive healthcare in later life and at end of life (Feldman, 2017; Ganzel, 2018; Glick et al., 2018; Kusmaul & Anderson, 2018; Osei-Boamah, Pilkins, & Gambert, 2013). Yet not all difficult events in a person’s life should necessarily be viewed

as trauma. In particular, the death of someone significant may lead to bereavement (APA, 2013). However, if the death event itself was traumatic, trauma and/or persistent complex bereavement may co-occur (APA, 2013). They have similar symptoms, including avoidance and intrusive thoughts, and can be difficult to differentiate (APA, 2013). Unlike PTSD, persistent complex bereavement includes “preoccupation with the loss and yearning for the deceased” (APA, 2013). Additionally, some distress at end of life may be unrelated to loss or trauma. However, end-of-life constraints such as limited time and patient energy may make differential diagnosis between trauma, complex bereavement, and other distress impractical. For this rea- son, the authors recommend using a universal precautions approach within the hospice and other end-of-life settings.

Principles of trauma-informed care

SAMHSA’s trauma-informed care guidelines provide a roadmap for agen- cies that do not provide trauma-specific services. According to SAMHSA (2014), trauma-informed organizations have a basic understanding of the impacts of trauma, recognizes its signs, and responds using trauma- informed approaches across the organization, actively avoiding re-trauma- tization. There are six principles to providing trauma-informed care: safety; trustworthiness and transparency; peer support; collaboration and mutual- ity; empowerment, voice, and choice; and cultural, historical, and gender issues (SAMHSA, 2014). Organizations should ensure the physical and psy- chological safety of all clients and staff. They should operate with

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transparency to build trust with those who serve and whom they serve. By utilizing peer support, they empower those who have experienced trauma and their stories to be agents of healing. Organizations promote collabor- ation through shared decision-making, seeking to minimize power differen- tials. They use a strengths-based approach to empower clients and staff to engage in meaningful decision-making activities. Finally, organizations rec- ognize historical trauma and power differentials related to identities and work to provide responsive, culturally-appropriate services.

Trauma and end of life

Numerous articles note the paucity of research exploring trauma and older adults (Dinnen, Simiola, & Cook, 2015; Hiskey et al., 2008; Osei-Boamah et al., 2013; Ramsey-Klawsnik & Miller, 2017) and trauma and end of life (Ganzel, 2018; Glick et al., 2018; Woods, 2003). A significant portion of the available literature focuses on veterans (Glick et al., 2018; Hiskey et al., 2008). One study found that although veterans reported PTSD symptoms less often than pain or dyspnea, when they did report them, family mem- bers described those symptoms as being more distressing to the veterans than dyspnea (Alici et al., 2010). PTSD symptoms were also associated with lower satisfaction with emotional support in end-of-life care, communica- tion problems, and the perception of less attention being paid to the dying person’s dignity and well-being (Alici et al.). People with a history of trauma and those with trauma-related symptoms report higher levels of pain at end of life (Ganzel, 2018). Glick and colleagues (2018) note that evidence points to a “bidirectional relationship” between pain and PTSD: those with PTSD report higher pain levels and people with pain report more trauma-related symptoms. Trauma-related symptoms fundamentally shift how a person experiences the world and these changes can have an especially pointed impact at end of life. Trauma symptoms have a negative impact on quality of life and increase the likelihood of emotional distress and comorbid mental health issues such as anxiety, depression, and sub- stance use disorders (Feldman, 2011; Ganzel, 2018). In the context of overlapping symptoms and complex comorbidities,

accurately assessing for trauma can be challenging, but important. The risk of missing the cause of a symptom brings the risk of mistreating the symp- tom and inadequately alleviating distress (Feldman & Periyakoil, 2006). It is also essential to screen for common comorbidities, such as depression, anxiety, substance use disorder, and suicidality (Glick et al., 2018). While valid and reliable assessment tools exist for PTSD, no research validates them for use at end of life (Glick et al., 2018).

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A person at end of life may have recent traumatic experiences, or earlier traumas that may be triggered during end-of-life experiences, including by the dying process itself (Feldman & Periyakoil, 2006). Some symptoms, such as intrusion, are more common at end of life than full-threshold PTSD (Feldman & Periyakoil, 2006). SAMHSA (2014) emphasizes an event, experience, effect framework that acknowledges the individual trauma jour- ney. While certain types of events such as abuse, disasters, and accidents can raise the likelihood of trauma-related symptoms, it is someone’s experi- ence of that event (how they understand what happened), and the after- effects, or symptoms specific to that person that make it significant, not an official diagnosis (SAMHSA, 2014). Trauma-related symptoms may impact social support networks and communication with healthcare providers. People with PTSD often have stressed social relationships and fewer social supports (King et al., 2006), which can result in fewer informal caregivers available to help at end of life (Glick et al., 2018; Kaiser, Seligowski, Spiro, & Chopra, 2016). They also often have difficulty trusting authority figures, such as medical providers, which can make the difficult conversations that must occur near end of life even harder (Glick et al.). This distrust impacts disclosure of sensitive information (Jeffreys, Leibowitz, Finley, & Arar, 2010), and, combined with avoidance of upsetting situations and stimuli, can adversely impact healthcare decision-making, delaying important end- of-life decisions when time is scarce and precious. This distrust can also lead to nonadherence to medical advice (Feldman, 2011) or incomplete reporting of symptoms to medical providers. Green and colleagues (2016) suggest that with appropriate training of the medical providers this com- munication can be improved. Current literature reveals that many older adults and people at end of

life are impacted by trauma (Krause et al., 2004; Pietrzak et al., 2012). There is significant overlap between the symptoms and needs of older adults and people at end of life, and specific subgroups, such as veterans, may have some additional specific factors for consideration. Overall, there is a need for greater adoption of trauma-informed approaches by healthcare organizations, including hospice and palliative care providers.

A model for intervention

Interventions for trauma at end of life include both pharmacological and psychosocial options. Social workers are trained to offer the latter. Based on the client’s strengths and needs, these interventions fit well with person- centered approaches in long-term care settings, and may include psycho- education of the client and their loved ones, normalizing end-of-life and trauma-related experiences, and education and training for the staff

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(Feldman & Periyakoil, 2006; Glick et al., 2018). Feldman (2011) offers a framework for providing trauma intervention at end of life: the Stepwise Psychosocial Palliative Care Model (see also Feldman, 2017; Feldman et al., 2014). The model moves the practitioner through assessment and interven- tion across three stages, moving from interventions that require the least effort by the dying person toward those that require more effort, progress- ing only if the prior phase has not adequately palliated the trauma-related discomfort and the person has sufficient time, stamina, and desire to pro- ceed (Feldman, 2011). This assessment requires communication across the interprofessional team (Feldman, 2017), defined by the Medicare Hospice benefit as minimally including a physician, nurse, social worker, and pas- toral/other counselor and often inclusive of care requiring other team members, such as physical, occupational, or speech therapists, home health aide, homemaker, pharmacist, and dietary or additional counselors (SSA, Title 42 section 1861). The model is designed to be flexible and a step that is already underway would likely continue concurrently with subsequent steps. Trauma-informed hospice care is best approached collaboratively, as each team member’s observations may be needed in assessment, and Stage I interventions are likely to be applied by all team members (Feldman, 2017). The first stage in this model focuses on practitioners using interventions

to alleviate distress by taking actions on behalf of clients (Feldman, 2017; Feldman et al., 2014). As members of the interdisciplinary team build rap- port with a client, they may learn of distressing aspects of a client’s situ- ation that they could take collaborative, direct action to ameliorate (Feldman et al., 2014). While this runs counter to typical social work approaches of empowering clients to solve their own problems, it addresses the reality that many hospice clients may have little time and energy to take such actions on their own (Feldman et al., 2014). During stage II of the model, intervention shifts to offering tools for the

patient to use on their own to cope with distress as it arises (Feldman, 2017). Psychoeducation and coping support are interventions that hospice social workers and other members of the team may be already equipped to offer (National Coalition for Hospice and Palliative Care, 2018; NASW, 2004). Providing information about prevalence and potential impacts of trauma can reassure patients and family members about some of the unpleasant symptoms one is experiencing (Feldman, 2017). Social workers may wish to frame this information carefully, normalizing it to minimize any feelings of stigma or shame. Similar to progression to stage II, before moving to stage III interven-

tions, the hospice team should assess effectiveness of previous interventions (Feldman, 2017). Unlike Stages I and II, Stage III interventions involve

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treatment specific to full-threshold PTSD. Qualified personnel, such as a Licensed Clinical Social Worker (LCSW) or Licensed Professional Counselor (LPC), must complete differential diagnosis for PTSD prior to moving to stage III. Interventions in stage III entail thinking and speaking about trauma memories during sessions and should only be used if trauma symptoms are not adequately relieved and if the patient’s energy, prognosis, ability, and willingness to continue have been sufficiently assessed (Feldman, 2017). This stage is less likely to be utilized for hospice patients, based on limited prognoses. If indicated, any trauma-focused approach can be used during stage III, with eye movement desensitization and reprocess- ing (EMDR) therapy as one option (Feldman, 2017; Ganzel, 2018). Some hospices are not equipped to provide this level of intervention themselves and outside referrals may be needed.

Case example

Richard is 82 and has Parkinson’s disease. He enrolled in hospice after experiencing significant decline from his disease. Richard and his wife, Helen, married 60 years, live with their daughter, Christine. During initial visits with Richard, it became apparent that he enjoys talking about the life he and his wife had “back home.” Per Christine, her parents had been liv- ing in the home where they raised their children until 2 years ago, but had moved in with her across the country after the unexpected death of her oldest sister, Katrina. At times Richard enjoys reminiscing about his daugh- ters’ childhood and other memories of Katrina. Other times he becomes agitated and angry at the mention of her. Christine and her spouse both work, but she has some flexibility and is gone from the home for around half of the work week. Richard describes himself as artistic and creative; he loves music, paint-

ing, and woodworking. He expresses feeling “old” and “weak” and struggles with not being able to do all he wants. His progressing illness has made it too difficult for him to regularly engage in these activities. Helen also has multiple health challenges, primarily heart disease, and is very hard of hear- ing making it particularly difficult for Richard and Helen to communicate. Richard and Helen have become involved at their daughter’s church, but miss their home community. Helen and Christine are increasingly worried that Richard will fall, as he

does not like to use his walker despite increasing weakness. He has also been getting up at night and even though he and Helen share a bed, she generally does not hear him. He says he has a hard time sleeping, because of distressing dreams and recurring, intrusive thoughts as he lay awake. He is often tired during the day and falls asleep mid-activity but says he “does

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not like to take rests.” Richard often becomes agitated while receiving assistance with his activities of daily living, such as using the bathroom, changing clothing, or bathing. He has increasing confusion and forgetful- ness and sometimes says that his wife’s collectibles which adorn their bed- room “come to life.”

Case discussion and application of trauma-informed approach

Trauma-informed care is a whole organization approach that considers that everyone (staff, clients, and family members) may have experienced a past traumatic event that needs to be taken into consideration (SAMHSA, 2014). In hospice, where care is provided by an interdisciplinary team, all staff should have knowledge of trauma and be comfortable approaching care through this lens. Feldman’s model, outlined above, provides a road map to guide hospice providers from this whole organization approach through the care of a specific resident, which we apply to Richard here. Though full fidelity to each detail of Feldman’s model may be impractical in some instances in clinical practice, the model allows us to conceptualize approaches to addressing trauma at end of life.

Stage I: Palliate immediate discomfort and provide social supports Principle of universal precaution. In the case of Richard, the interdisciplinary hospice team might take a trauma-informed approach by using the prin- ciple of universal precaution (SAMHSA, 2014), operating under the assumption that any client may have a trauma background and approaches should seek to prevent possible retraumatization. This aligns with the first stage in the Stepwise Psychosocial Palliative Care Model (Feldman, 2011), as a universal precautions approach serves as a preventative measure. Where possible, prevention of distress is preferable to subsequent mitiga- tion of it. Worsening Parkinson’s disease involves progressive loss of physical func-

tion, including not only motor symptoms, but others, such as sleep distur- bances and psychosis (Parkinson’s Foundation, n.d.), which may appear similar to those of trauma-related origin. A universal precautions approach recognizes that symptoms could be related to effects of trauma in addition to or in combination with those related to physical disease. For example, Richard’s sleep disturbances or avoidance, visual perceptions (collectibles “come to life”), confusion, and forgetfulness could be related to his Parkinson’s disease, but also to the effects of trauma. The case example details numerous losses for Richard, along with several

clues about potential traumas. Richard is experiencing the physical and cognitive changes that come with Parkinson’s disease, which includes some

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loss of control of his body, physical limitations, difficulty communicating with his wife, the secondary loss of his hobbies (which may connect with his sense of identity and his coping skills), and even his sense of self (he describes himself as “old” and “weak”). His move across the country relates to the loss of his community, existing support network, and a familiar set- ting and sense of what to expect from the world around him. Moving in with his daughter decreased his sense of privacy and independence, with another person’s concern and input into his daily decisions, such as whether to use a walker. The move was also sudden, following his oldest daughter’s unexpected death. Such sudden, unexpected deaths can be trau- matic, especially depending on the circumstances surrounding the death. He may not have had an opportunity to say goodbye or make amends with her, the death itself may have been traumatic, and he likely felt little con- trol over any of it. These factors could contribute to an increased likelihood for complicated grief. Complicated grief, which consists of separation dis- tress and grief symptoms (Boelen & Lenferink, 2020) is distinct from PTSD, but shares symptoms such as disruptive thoughts and avoidance (Shear et al., 2011). If complicated grief were to occur, it could interact with trauma from the death experience or other life events and it would be a risk factor for developing symptomatic PTSD (Prigerson et al., 2009). These are only the losses and traumas that Richard and his family have shared; adopting a precautionary approach assumes that there may be add- itional, as-yet unnamed ones.

Move beyond prevention to active steps. Using empathy, the hospice team can validate Richard’s emotions and experiences and reassure him by providing clear explanations for his physical symptoms. To help relieve environmen- tally-related discomfort, the team can consider how the physical home environment might contribute to his discomfort (Feldman, 2017). Though Richard has lived with his daughter for two years, the surroundings may still feel unfamiliar, especially during moments of disorientation. Ideas for action may include inquiring about the kind of lighting Richard used at his old house at night when sleeping. Dim night lights might help Richard to reorient himself during periods of wakefulness. Richard may also be com- forted to have familiar furniture from “back home” in view from his bed. The use of an audio monitor is also an unobtrusive way for Richard to remain sleeping in his own bed, while allowing his daughter to be alerted if he falls or needs help when his wife does not waken to the noise. The hospice team can also make e

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