Sheila’s jaw is clenched. Sweat is beading on her forehead. I make a slow audible inhale, non-verbally inviting her to do the same. We’ve been talking about the nightmares which started shortly after she began receiving help with personal care. I remind her that she is safe — the day she was raped is decades in the past. Her conscious mind knows this, of course, but for people with posttraumatic stress disorder (PTSD) the brain, body and nervous system remain on high alert, responding to trauma reminders and traumatic memories as though the event were occurring in the present.
Though she never sought professional help, Sheila had found ways to cope with the fear, vulnerability and distrust left in the wake of the assault but had often felt disconnected from others and had struggled with persistent anxiety. Now that she was terminally ill, long-standing protective routines had been shattered, privacy undermined and intrusive memories of the night she was attacked had become frequent and intensely distressing.
In the last decade or so, we have learned a tremendous amount about PTSD and ways to help survivors of psychologically traumatic events heal. We also know a great deal about the challenges people face at the end of life and how to support those who are dying. Unfortunately, we know very little about the challenges faced by people like Sheila who have underlying PTSD and who are dying.
With the exception of some teams working at the Veterans Administration, most professionals trained in treating PTSD know little about end-of-life care. Those serving dying patients in hospice, palliative care or residential settings typically have little or no training in the assessment and treatment of PTSD.
This is unfortunate as there is a small but growing body of research which suggests that common end of life experiences such as intense feeling states, loss of independence, physical symptoms associated with illness, changes in mentation or the life review process which often occurs as a patient takes stock in his or her life can unearth painful traumatic memories. These and other end-of-life experiences can cause instantaneous, unconscious and highly charged associations with the traumatic event known as trauma triggers. For example, a combat veteran who survived being a prisoner of war may have an intense reaction when feeling confined or immobilized, which often happens as one’s body loses function and energy fades.
Moreover, events associated with medical care and aging can cause traumatic stress symptomatology, PTSD, and/or activate pre-existing psychological traumas causing what is sometimes referred to as delayed-onset PTSD. Given the perfect storm of advanced age, history of invasive or emergency medical care and terminal diagnosis which typifies the average patient receiving end-of-life care, it is likely that these patients have a higher incidence of PTSD and subclinical PTSD than the general population.
Signs of PTSD can take many forms. They can manifest physically in issues such as high blood pressure, respiratory distress, insomnia or obesity. They may manifest behaviorally in avoidance patterns or an exaggerated startle response. They can look like over-reactivity, low frustration tolerance, hyper-vigilance, distrust or being easily overwhelmed. They can manifest as emotions like fear, sadness or anger, distressing thoughts and beliefs about one’s self, others or the world. PTSD can look like dissociation, difficulty concentrating or processing information, depression or an inability to feel positive emotions.
Amidst the concerns and stress of dealing with a terminal illness, personal trauma histories often go undisclosed by patients who have difficulty trusting and may be carrying shame or who may prefer to avoid painful memories. When helping professionals are not trained in assessing for and recognizing the signs of PTSD these may be misconstrued as related to end-of-life anxiety, personality factors, underlying psychopathology or disease symptomatology. In some cases, these patients may be negatively stigmatized or given inaccurate psychiatric labels.
Navigating the end of life is difficult under the best of circumstances. When these difficulties are exacerbated by PTSD, the challenges can be significantly more complex. Though we need more research into this area, we must not wait to act. In the last twenty years, the concept of trauma-informed care has transformed the fields of mental health and substance abuse services and has begun transforming the field of education. Health care systems generally and hospice and palliative care settings specifically are behind the curve. It’s time to remedy this.
The National Center for Trauma-Informed Care has clear guidelines which can assist hospices, hospitals, palliative inpatient units and geriatric residential settings in providing trauma-informed care. These include an enhanced awareness and understanding of the potential impact of trauma on patients and their loved one, and developing the professional skills and training needed to recognize the signs and symptoms of trauma in patients, families as well as professional staff who may be at risk for vicarious trauma; and incorporating knowledge about psychological trauma into policies, procedures and organizational culture.
Moving in this direction will require commitment on all organizational levels as well as vision, patience, persistence and a willingness to fund educational and hiring priorities consistent with meeting this goal. Unless this commitment is undertaken, PTSD will continue to impede any prospect of a patient with PTSD finding their way toward what is sometimes referred to as a “good death” in which acceptance has been fostered, coping enhanced, suffering reduced and important messages of love, gratitude and forgiveness exchanged. For patients like Sheila, many of whom will have suffered quietly for years, their hospice, palliative care or nursing home team will be the last chance they have to find peace. If these teams are not knowledgeable about the intersection of PTSD and end of life care, they will continue to be ill-prepared to serve those who are among their most vulnerable patients.
Scott Janssen is a social worker.
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