As end of life approaches, many patients have endured countless hours of suffering through disease progression and intervention failures.1 It is our role as hospice and palliative care professionals to ease that suffering across all domains of issues associated with illness and bereavement, practically, physically, psychologically, socially and spiritually.2 For a selection of patients, we apply the skills of the entire interdisciplinary team and may never ease their suffering. Is there an aspect we may be missing in our assessments? Perhaps it’s in our history-taking- an experience in the past that caused psychological trauma for a patient and stress reactions are now coming to the surface? We are familiar with managing patients diagnosed with post-traumatic stress disorder (PTSD) but imagine the specifics of the trauma are unknown or do not yield enough criteria to support a PTSD diagnosis?
DEFINITIONS – SUBSTANCE ABUSE AND MENTAL HEALTH SERVICES ADMINISTRATION (SAMHSA) 3
Trauma…”refers to experiences that cause intense physical and psychological stress reactions. It can refer to “a single event, multiple events, or a set of circumstances that is experienced by an individual as physically and emotionally harmful or threatening and that has lasting adverse effects on the individual’s physical, social, emotional, or spiritual wellbeing” (SAMHSA, 2012, p.2).4 Although many individuals report a single specific traumatic event, others, especially those seeking mental health or substance abuse services, have been exposed to multiple or chronic traumatic events.”
A trauma-informed approach…”to the delivery of behavioral health services includes an understanding of trauma and an awareness of the impact it can have across settings, services, and populations. It involves viewing trauma through an ecological and cultural lens and recognizing that context plays a significant role in how individuals perceive and process traumatic events, whether acute or chronic.” 4
Trauma-informed care…”is a strengths-based service delivery approach “that is grounded in an understanding of and responsiveness to the impact of trauma, that emphasizes physical, psychological, and emotional safety for both providers and survivors, and that creates opportunities for survivors to rebuild a sense of control and empowerment” (Hopper, Bassuk, & Olivet, 2010, p. 82).5 It also involves vigilance in anticipating and avoiding institutional processes and individual practices that are likely to retraumatize individuals who already have histories of trauma, and it upholds the importance of consumer participation in the development, delivery, and evaluation of services.”
SOURCES OF TRAUMA AT END-OF-LIFE 1,6
Advanced age – the older the patient, the more experiences, the greater the accumulation of psychological traumas including:
- Sudden death or serious injury of a loved one
- Life-threatening illness or death of a child or spouse
- Memory review as a way to find life meaning (may reactivate old traumas)
Being seriously ill – life-threatening illness and associated intensive medical interventions 1 such as:
- Treatment for cancer
- Hemodialysis
- Critical care (e.g., delirium, sedation, physical restraint, immobilization)1
The stresses of being at end-of-life include:
- Pain and symptom management
- Psychological distress
- Social isolation
- Cultural values
- Loss of independence
- Existential distress
- Difficulties with activities of daily living
- Life closure issues (legacy, financial, decisions)
- Concern for loved ones after death
SIGNS & SYMPTOMS
Patients with psychological trauma will experience some but not all of the below signs, symptoms and sequelae:
Re-activation/Re-experiencing:
- Difficulties with processing emotion
- Inability to concentrate
- Irritability
- Jumpiness
- Distrust
- Flashbacks
- Sleeplessness and/or nightmares
Symptoms of avoidance as a means of protection:
- Avoidance of medical settings and medical personnel
- Numbness
- Loss of interest
- Distorted sense of blame
- Forgetting important elements of the trauma
ISSUES THAT COMPLICATE 1,3,6
Potential Patient Barriers
- Lack of energy
- Cognitive or communication impairment
- Trust and safety issues
- Desire to avoid painful memories
- End-of-life symptom management issues
Potential Practitioner Barriers
- No consensus on how to assess
- Staff may not be trained or prepared to respond
Triggers for Trauma
- Multi-sensory (sight, sound, smell, taste, touch)
- Inner and outer physical sensations (heat, pressure, constriction)
- Memories, thoughts or images
- Emotional states (fear, helplessness)
- Situations (being crowded or immobilized)
TRAUMA-INFORMED END-OF-LIFE CARE 1,3,6
Organization Preparedness/Staff Training
According to SAMSHA, a trauma-informed organization: 3,6
- Realizes the widespread impact of trauma and understands potential paths for recovery
- Recognizes the signs and symptoms of trauma in clients, families, staff, and others involved with the system
- Responds by fully integrating knowledge about trauma into policies, procedures, and practices
- Seeks to actively resist re-traumatization
Patient History Taking/Assessment
- Recognize that “life review” based questions can prompt both positive and negative memories and emotions
- Consider scripts in communicating with patients, family and/or caregivers such as, “Have you ever experienced something that made you feel less safe in the world or that changed you in a way that has made your life more difficult?” 6
- Include trauma history in the patient record and care plan for the review and collaboration of the entire interdisciplinary team
Management
- Enhance patients’ sense of safety and create safer physical and emotional environments
- Enhance patient choice and control
- Recognize patient triggers and reduce the chance of re-traumatization
- Decrease adverse experiences such as psychological crises, isolation or unwanted hospitalizations
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For additional information on this topic, please review these references:
- Ganzel BL. Trauma-informed hospice and palliative care. The Gerontologist. 2018;58(3):409-419.
- Canadian Hospice Palliative Care Association. A Model to Guide Hospice Palliative Care. Ottawa, ON: Canadian Hospice Palliative Care Association, 2013. Available from: http://www.chpca.net/media/319547/norms-of-practice-eng-web.pdf
- Substance Abuse and Mental Health Services Administration. Trauma-Informed Care in Behavioral Health Services. Treatment Improvement Protocol (TIP) Series 57. HHS Publication No. (SMA) 13-4801. Rockville, MD: Substance Abuse and Mental Health Services Administration, 2014. Available from: https://store.samhsa.gov/system/files/sma14-4816.pdf
- Substance Abuse and Mental Health Services Administration. SAMHSA’s workingdefinition of trauma and principles and guidance for a trauma-informed approach [Draft].2012.Rockville, MD: Substance Abuse and Mental Health Services Administration.
- Hopper EK, Bassuk EL, Olivet J. Shelter from the storm: Trauma-informed care in homelessness services settings. The Open Health Services and Policy Journal. 2010.3:80–100.
- National Hospice and Palliative Care Organization (NHPCO). Trauma-Informed End-of-Life Care. Released December 10, 2018. Accessed February 19, 2019. Available from: https://www.nhpco.org/trauma%E2%80%90informed-end-life-care