PTSD: National Center for PTSD
PTSD and End of Life: Clinical Considerations for PTSD in Palliative or Hospice Care
PTSD and End of Life: Clinical Considerations for PTSD in Palliative or Hospice Care
Patients receiving health care at end of life (EOL) may receive palliative and/or hospice care for their medical conditions. One task of end-of-life care is to help patients have a death that involves minimal pain and suffering, optimal emotional well-being, and quality of life as defined by the patient (1,2). For patients with pre-existing PTSD, some may have had chronic symptoms, and others may experience a flare of symptoms during EOL, either of which can complicate the dying process for patients and their loved ones. Although there has been very little research on PTSD specifically at EOL, clinical guidelines are emerging that may support clinicians and point to areas for future research.
This article is designed for an audience of clinicians who primarily work with patients at EOL (considered roughly a life expectancy of one year or less, though definitions vary) and may also be helpful for PTSD specialists whose patients become seriously ill or injured. Most writing and research on this topic involved Veterans—largely older male ones—and discussed combat-related trauma; it will be important for future work to consider the experiences of women and civilians, and other trauma types (e.g., sexual assault, racial trauma).
In This Article
End-of-Life Care: Palliative and Hospice Care
For many medical diagnoses, particularly those that are life threatening, patients have the option of receiving palliative care (also referred to as supportive care). Palliative care is a holistic approach that focuses on promoting quality of life as well as providing patients with relief from the symptoms, pain and stress of a serious illness, regardless of diagnosis. Palliative care can be delivered in conjunction with treatment designed to cure disease, or, in cases where patients face incurable illness, palliative care may be the primary offering. Hospice care is somewhat more specific, in that it is generally available as an insurance benefit when the prognosis of an illness is 6 months or less. Thus, palliative care is a broader umbrella term. It can take place in a hospital, nursing home or a patient's home. The palliative care team is a coordinated and interdisciplinary one, composed of medical doctors and nurses, and can include other therapists as called for by the needs of the patient and family. In VA, core palliative team members also include social workers, mental health providers and chaplains. Close loved ones and family are often considered part of the team and the unit of care since the goal of palliative care is to relieve suffering and support quality of life for the patient and the whole family. Goals of care are collaboratively determined by the care team and the patient and family.
How might PTSD affect end-of-life care?
There has been very little empirical research on PTSD at EOL, including prevalence, presentation or effect on other aspects of care. Therefore, much of the knowledge about how PTSD can present in palliative care is based on case reports and clinical writing, as well as informed by what we know of related populations (e.g., older adults, those with neurocognitive disorders). Clinically, PTSD may be missed in EOL care for a number of reasons, including lack of psychiatric expertise within the treatment team, the fact that patients often don't talk about trauma unless asked, possible dementia making it challenging for patients to talk about symptoms or trauma directly, and PTSD symptoms being expressed as, or covered up by, other symptoms (e.g., irritability not being recognized as due to PTSD, dissociative flashbacks being mistaken for delirium) (3).
Clinical literature and case studies have documented that Veterans with PTSD may have an increase in symptoms while in palliative care, even if symptoms were well controlled prior to change in health status (3,4). Although this exacerbation is most likely the case for civilian trauma as well, such a finding has been less commonly discussed.
Two studies asked family members of deceased Veterans whether the Veteran had "reexperienced the stress and emotions that they had when they were in combat". They found that 9 to 17% had experienced such combat-related stress in their last month of life (4,5). One study found that these posttrauma symptoms were associated with more discomfort than dyspnea (shortness of breath) (4). The other found that these posttrauma symptoms were worse for those who were younger, male, Black, and with more comorbidity, but were improved for those who had a palliative care consult and felt listened to or had their emotional needs met (5). These studies did not use diagnostic interviews and only asked about combat, so they cannot indicate true prevalence of PTSD. However, they do concur with other clinical literature in indicating that PTSD may complicate EOL outcomes for Veterans and their families.
Another study found that Veterans at EOL who had PTSD had increased health care utilization and antipsychotic prescriptions than those without PTSD, suggesting that PTSD likely increases symptom burden. Veterans with PTSD possibly experienced greater terminal delirium than patients without PTSD (6). Indeed, we know that PTSD increases risk for dementia, which can also complicate the clinical picture at end of life by making it more challenging to identify the source of behavioral symptoms or the most appropriate treatment approaches.
There are multiple reasons that PTSD symptoms may be present or exacerbated at EOL:
- Life-threatening illness or injury itself may constitute a trauma, either leading to PTSD or exacerbating existing PTSD (7). Further, studies have found elevated rates of PTSD in intensive care units related to the treatment itself (8).
- Earlier trauma may be evoked by other aspects of the treatment or dying process, such as receiving intimate care (i.e., being touched by a provider), a sense of lack of control, or being reliant on others.
- For those who have experienced sexual assault, racial trauma or other interpersonal trauma, the appearance, cultural traits, gender or race of a provider may be a trauma reminder. There is some indication that PTSD at EOL may be worse for Black Veterans (5), whether because of disparate trauma experiences or disparate health care.
- Trauma reminders may be more salient if a patient is experiencing a neurocognitive disorder; single stimuli (whether a machine beeping or the touch of a hand) may be perceived in isolation of medical care and easily misinterpreted as a current danger given heightened arousal response (9)
- A process of spontaneous life review can be common later in life (10) and especially when living with a life-limiting illness; this process may be complicated if a person has not found a way to make sense of trauma(s) they experienced, leading to potential for guilt, shame, regret, or a loss of meaning or faith. Life review may be particularly painful in the case of traumas that also involve moral injury or implicate patients' spiritual beliefs.
When present, the symptoms of PTSD may complicate care for patients in palliative or hospice settings, thus interfering with the potential for as much quality of life as possible at EOL. See Table 1 for examples.
Table 1. PTSD Symptoms and End-of-Life Care
|PTSD Symptom Criterion||Implication for End-of-Life Care|
|Criterion A: Stressor||Current symptoms may increase, or subclinical cases may emerge after new medical stressors or when death seems imminent. Life-threatening medical emergencies or events that evoke imminent death are themselves traumatic (DSM-5-TR; 11).|
|Criterion B: Intrusions||The life review process may lead to heightened intrusive recollections of trauma along with distress. PTSD-related nightmares can also contribute to poor sleep.|
|Criterion C: Avoidance||Medical problems and the dying process can be (re)traumatizing. Patients may cope by avoiding—not engaging in decision making processes, becoming more withdrawn and isolated, avoiding talking about what they are experiencing or about death—resulting in poorer doctor-patient relationships, less social support, and difficulties in treatment planning (12). PTSD may have eroded social support earlier in life, leaving patients lonelier or without caregivers in the dying process.|
|Criterion D: Negative||Alterations in Cognition and Mood Patients with PTSD may have negative beliefs and expectations about treatment (e.g., "What is the point?") or mistrust of providers (13). PTSD (or moral injury)-related changes in cognition and mood may also lead to an increased sense of blame, guilt or shame. Increased anhedonia or detachment from others may also be present.|
|Criterion E: Alterations in Arousal and Reactivity||Significant anger or irritability may lead to problems with family members and the treatment team (especially when not recognized as stemming from PTSD). Significant anxiety, including panic attacks, as well as agitation and sleep problems may occur.|
Palliative and Hospice Care for the Patient With PTSD and Their Family
When appropriate, the palliative care team can help family and loved ones as well as patients to understand why PTSD symptoms may (re)emerge at EOL when coping mechanisms are challenged. This reemergence can be surprising for family and members of the patient's support network, especially if PTSD symptoms had previously been well-controlled or if the patient had avoided revealing symptoms. If patients have not previously spoken about trauma(s), loved ones may feel uncertain about how to respond. Both families and patients themselves may need to come to terms with the status of their relationships if PTSD has interfered with their interactions with others. Some individuals with PTSD might experience a sense of guilt related to perceived shortcomings in their relationships if, for instance, PTSD symptoms led to withdrawal that was hurtful to loved ones and now feels too late to repair.
Thus, at many points in EOL care, the team may want to help both the patient and the family (or close support network) to better understand and to manage PTSD symptoms more effectively. Initial education, screening and management can take place within the team itself, with the opportunity to connect family or patient with a mental health specialist if initial efforts are not sufficiently helpful, or if there is not sufficient mental health expertise on the team itself.
Special Considerations Regarding Assessment of PTSD at End of Life
An accurate diagnosis of PTSD or at least recognition of PTSD-related symptoms can be helpful in guiding treatment. It can also help caregivers to accurately attribute symptoms and therefore experience more empathy rather than blame toward patients related to these symptoms (3). To date, no studies have specifically validated any assessment methods for PTSD at end of life. Therefore, guidance is based on clinical writing and extrapolation from what is known about PTSD assessment in related populations.
When considering best practices for assessment and treatment of PTSD at EOL, the goals of care must be carefully considered. Some questions to guide assessment are:
- Is it possible PTSD is part of the clinical picture for this patient?
- How much is PTSD interfering with quality of life?
- What are the patient's and family's goals in relation to symptom alleviation?
- How much time and energy does the patient have to devote to a PTSD assessment?
The first of those questions can be answered by screening for trauma and PTSD, which can be conducted by any member of the care team. Screening is indicated if providers notice symptoms that may indicate the presence of trauma and may be interfering with quality of life.
On the other hand, universal screening may also be helpful given that patients will often not spontaneously disclose trauma without being asked, and that PTSD symptoms can masquerade as other common EOL symptoms (e.g., flashbacks may look like delirium or agitation, insomnia may be due to nightmares instead of pain). This conversation might be opened with patients by asking such questions as:
- "As people live with serious illnesses, they sometimes experience reminders of prior scary or upsetting events. Has this happened to you?"
- "Have you felt guilty or bothered about events that previously happened in your life?" (14)
Such questions can be followed by a brief screen for PTSD. The PC-PTSD-5 is validated in a primary care setting and has the benefit of being brief enough to be easily implemented in a clinical setting (though, like other PTSD measures, it has not been validated in this population). If desired, other validated measures may be used: the Life Events Checklist (LEC-5) to assess for a range of traumas, or the PCL-5 to get a sense of severity of symptoms. But again, these need only be used as appropriate to the patient's goals for care, and as possible given the patient's energy level, concentration and cognitive level.
There may be times when a patient is unwilling or unable (due to dementia, etc.) to give a trauma history. Lack of desire to discuss trauma should be respected. Assessment can be supplemented by a chart review or by discussion with the patient's family (3), though it is possible that this will not help if the patient has not previously discussed PTSD or is having a late-life emergence of PTSD for the first time. Providers might ask family members whether their loved one has a history of trauma, as well as whether they have noticed particular situations that cause irritation, distress or withdrawal in their loved one. If there is a potential for PTSD that cannot be confirmed, many of the following recommendations for management of PTSD can be followed "as if" the patient has a history of trauma if symptoms appear to be present (15). Indeed, for some patients, a suggestion of a mental health diagnosis may be difficult to accept given general societal stigma, and in these circumstances, it may be preferable to talk about "the challenges of adjusting to your difficult situation" rather than about mental health per se.
Finally, given the prevalence of comorbidity, consider also assessing for depression, anxiety, suicidality, and alcohol or substance use.
Treatment Considerations for Management of PTSD at End of Life
As with assessment, there is no empirical research—including randomized controlled trials—on PTSD treatment at EOL. Therefore, recommendations are based on the general PTSD treatment literature, with modification based on evidence from clinical writing and consideration of goals of care relevant to EOL. Again, providers might benefit from considering:
- How much is PTSD interfering with quality of life or of dying?
- Is symptom alleviation a prominent goal for the patient or family?
- How much time and energy does the patient have to devote to PTSD treatment or management?
Standard treatments for PTSD often include psychotherapy and/or medications, but these standard approaches may not be the most appropriate at EOL (3). For instance, both antidepressants and trauma-focused psychotherapy are very effective but often take weeks to begin to work and may involve side effects or increased distress in the short term. If life prognosis is short, cognitive reserve is decreased, or addressing PTSD is not a central goal for the patient, then a course of PTSD treatment may not be the best fit. Instead, in line with easing suffering, environmental modifications might be undertaken to increase patient comfort. (See Table 2.) Many of these types of actions can be taken by any provider, not only mental health specialists. Given that certain types of traumas can raise questions about faith and spirituality that may be especially salient at EOL, involvement of pastoral care may be appropriate as well.
Table 2. Environmental Strategies for Management of PTSD Symptoms at EOL
|Symptom/presentation||Strategy with selected examples|
PTSD can be associated with a feeling of loss of control, safety and trust
Take care to build trust with patient:
Take actions designed to give the patient control over treatment plan and concerns, when possible:
Identify cues that make a patient feel safe or unsafe that could be changed:
Identify any triggers for unwanted recollections or what they find disturbing, and mitigate when possible, e.g.:
Identify skills or actions that can help to distract or soothe the patient when triggered e.g., grounding, sensory stimulation, mindfulness exercises, deep breathing, going for a walk
If a patient is having a flashback, do not touch them. Rather, call the patient's name in a calm voice and explain where you are and what you're doing e.g., "I am Dr. X, we are in your room at Y Hospital". Repeat this until the patient becomes oriented.
Hypervigilance or increased arousal
Decrease environmental triggers identified above
Aim for a calm, soothing environment as much as possible, with a visible entrance into the room
Avoid loud or startling noises
Irritability or anger
Summarize the patient's concerns and empathize
Identify immediate triggers along with any unsolved needs these represent (especially around safety, control and trust). Remediate any needs and take any steps that will enhance safety and sense of control.
Remain calm and centered, speaking in a conversational tone. If your presence is making emotional arousal worse, tell the patient you are leaving the room, when you will return, and the importance of continuing to provide quality care. Upon return, ask if the patient is ready to allow you into their space.
Note: The above recommendations reflect contributions from Dr. Douglas Lane (VA Puget Sound Healthcare System), Dr. Heather Smith (Milwaukee VAMC), and recommendations from published articles (16, 17).
Step-wise Psychosocial Palliative Care (SPCC) Model
Given the lack of research on treatment at EOL (see 3 for a review), Feldman (2017) has proposed a heuristic model for providing palliative PTSD care according to the needs of the patient and lifespan prognosis (16). Three stages are outlined that focus on providing rapid improvements in suffering and quality of life, consistent with a palliative model. The 3 stages are outlined in Table 3 below. Moving on to later stages only occurs if the earlier stages did not sufficiently resolve symptoms and there is adequate time and energy to implement the later interventions. Any member of the care team may implement steps in Stage I, with potential referral as needed to mental health specialists in Phases II or III.
Table 3. Stages of the SPCC Model
|Stage I: Palliate Immediate Discomfort and Provide Social Support||Stage II: Provide PTSD Psychoeducation and Enhance Coping Skills||Stage III: Treat Specific Trauma Issues|
The decision about which medications to use for PTSD management at EOL should involve the patient and family members, and keep in mind their highest priorities for treatment. Since the timeline and goals of care may be different at EOL for patients and their families, medications not typically used for PTSD might be considered if they help ease suffering for the patient and their family. In general, for medication changes at EOL, the adage "start low and go slow" is appropriate. However, when prognoses are short, consider titrating medications up relatively quickly so long as no side effects are noted.
Considerations are outlined below:
- Certain SSRI's and SNRI's are considered first-line PTSD medications (18) and may be appropriate for patients with PTSD at EOL, if they have been already taking them, or have a prognosis that will allow time for the medications to take effect. A medication that does not need to be swallowed (and can be rapidly discontinued without significant withdrawal symptoms) may be helpful in case difficulties in swallowing develop (e.g., sertraline vs. venlafaxine).
- Benzodiazepines are generally contraindicated for use in PTSD but may be considered in a palliative setting after weighing pros and cons with patients and their families and considering their goals for care. Benzodiazepines may be appropriate if easing of anxiety and discomfort is paramount; on the other hand, they can cause or worsen delirium leading to patients missing opportunities for remaining quality interactions. So, the decision of whether to use one depends on what is most important at that point to the patient and their family. Concerns about future addiction or dependence are likely to be less relevant for those with a short life prognosis. Benzodiazepines should be used with caution in patients taking opioids. Start at a low dose and monitor for over-sedation.
- Likewise, antipsychotics are generally contraindicated for PTSD, but are frequently used to treat terminal delirium. One VA study found that during EOL care, Veterans with PTSD were more likely than those without PTSD to be prescribed an antipsychotic (6). The largest RCT to date found that antipsychotics may not help delirium and may in fact lead to worse outcomes than placebo (see 19). Start at a low dose and monitor for over-sedation.
At EOL, PTSD can make some of the tasks of health care—and of facing mortality—especially challenging. Providers can consider screening for trauma or PTSD and when that is not feasible, utilizing the principles of trauma-informed care to ease any suffering or distress that may be related to past trauma. The PTSD Consultation Program can be helpful in navigating challenging clinical questions about Veterans at EOL where PTSD has been infrequently studied.
- We Honor Veterans is a collaboration between the Department of Veterans Affairs and the National Hospice and Palliative Care Organization (NHPCO) where you can search for end-of-life care resources to support Veterans and their families.
- American Psychological Association's (APAs) End of Life Issues and Care site includes links to EOL organizations and featured resources to support psychologists working with diverse patients and families at EOL.
- Meier, E. A., Gallegos, J. V., Thomas, L. P. M., Depp, C. A., Irwin, S. A., &Jeste, D. V. (2016). Defining a good death (successful dying): Literature review and a call for research and public dialogue. The American Journal of Geriatric Psychiatry, 24(4), 261-271. https://doi.org/10.1016/j.jagp,2016.01.135
- Aslakson, R. A., Cox, C. E., Baggs, J. G., &Curtis, J. R. (2021). Palliative and end-of-life care: Prioritizing compassion within the ICU and beyond. Critical Care Medicine, 49(10), 1626-1637. https://doi.org/10.1097/CCM.0000000000005208
- Glick, D. M., Cook, J. M., Moye, J., &Kaiser, A. P. (2018). Assessment and treatment considerations for post traumatic stress disorder at end of life. American Journal of Hospice and Palliative Medicine, 35(8), 1133-1139. https://doi.org/10.1177/1049909118756656
- Alici, Y., Smith, D., Lu, H. L., Bailey, A., Shreve, S., Rosenfeld, K., Ritchie, C., &Casarett, D. J. (2010). Families' perceptions of Veterans' distress due to post-traumatic stress disorder-related symptoms at the end of life. Journal of Pain and Symptom Management, 39(3), 507-514. https://doi.org/10.1016/j.jpainsymman.2009.07.01
- Kaiser, A. P., Moye, J., Baird, L., Sager, Z., &Wachterman, M. (2023). Factors associated with distress related to posttraumatic stress disorder at the end of life among U.S. Veterans. Journal of Pain and Symptom Management. Advance online publication. https://doi.org/10.1016/jpainsymman.2023.04.01
- Bickel, K. E., Kennedy, R., Levy, C., Burgio, K. L., &Bailey, F. A. (2020). The relationship of post-traumatic stress disorder to end-of-life care received by dying Veterans: A secondary data analysis. Journal of General Internal Medicine, 35(2), 505-513. https://doi.org/10.1007/s11606-019-05538-x
- Parker, A. M., Sricharoenchai, T., Raparla, S., Schneck, K. W., Bienvenu, O. J., &Needham, D. M. (2015). Posttraumatic stress disorder in critical illness survivors: A metaanalysis. Critical Care Medicine, 43(5), 1121-1129. https://doi.org/10.1097/CCM.0000000000000882
- Davydow, D. S., Gifford, J. M., Desai, S. V., Needham, D. M., &Bienvenu, O. J. (2008). Posttraumatic stress disorder in general intensive care unit survivors: A systematic review. General Hospital Psychiatry, 30(5), 421-434. https://doi.org/10.1016/j.genhosppsych.2008.05.00
- Jensen, J. S. (n.d.) Trauma-informed dementia care. Social Work Today. https://www.socialworktoday.com/archive/exc_0218.shtml
- Davison, E. H., Spiro, A. I., &Kaiser, A. P. (2020). The reemergence of trauma in aging U.S. military Veterans. Trauma &Gewalt, 14(4), 304-319. https://doi.org/10.21706/tg-14-4-304
- American Psychiatric Association. (2022). Diagnostic and statistical manual of mental disorders (5th ed., text rev.). https://doi.org/10.1176/appi.books.9780890425787
- Shemesh, E., Yehuda, R., Milo, O., Dinur, I., Rudnick, A., Vered, Z., &Cotter, G. (2004). Posttraumatic stress, nonadherence, and adverse outcome in survivors of a myocardial infarction. Psychosomatic Medicine, 66(4), 521-526. doi:10.1097/01.psy.0000126199.05189.86
- Feldman, D. B., &Periyakoil, V. S. (2006). Posttraumatic stress disorder at the end of life. Journal of Palliative Medicine, 9(1), 213-218. https://doi.org/10.1089/jpm.2006.9.213
- Meyerson, J. L., O'Malley, K. A., Obas, C. E., &Hinrichs, K. L. (2022). Lived experience: A case-based review of trauma-informed hospice and palliative care at a Veterans Affairs Medical Center. American Journal of Hospice and Palliative Medicine, 40(3), 329-336. https://doi.org/10.1177/10499091221116098
- Janssen, S. (n.d.). Trauma-informed care. Today's Geriatric Medicine. https://www.todaysgeriatricmedicine.com/news/ex_022719.shtml
- Feldman, D. B. (2017). Stepwise psychosocial palliative care: A new approach to the treatment of posttraumatic stress disorder at the end of life. Journal of Social Work in End-of-Life &Palliative Care, 13(2-3), 113-133. https://doi.org/10.1080/15524256.2017.1346543
- Laramie, J. A. (2007). Post-traumatic stress disorder at the end of life. Home Healthcare Nurse: The Journal for the Home Care and Hospice Professional, 25(5), 293-298. https://doi.org/10.1097/01.NHH.0000269960.41668.5d
- Department of Veterans Affairs and Department of Defense. (2017). VA/DoD Clinical Practice Guideline for the Management of Posttraumatic Stress Disorder and Acute Stress Disorder. Author. Retrieved from: https://www.healthquality.va.gov/guidelines/MH/ptsd/
- Agar, M. R., Lawlor, P. G., Quinn, S., Draper, B., Caplan, G. A., Rowett, D., Sanderson, C., Hardy, J. Le, B., Eckermann, S., McCaffrey, N., Devilee, L., Fazekas, B., Hill, M., &Currow, D. C. (2017). Efficacy of oral risperidone, haloperidol, or placebo for symptoms of delirium among patients in palliative care: A randomized clinical trial. JAMA Internal Medicine, 177(1), 34-42. https://doi.org/10.1001/jamainternmed.2016.7491
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