Post-traumatic stress disorder (PTSD) is more common in the dying, their families and the bereaved than you might think. Dr Louis Heyse-Moore, a retired consultant in palliative medicine, counsellor and writer, explains how recent advances in the treatment of PTSD may be relevant to improving support for the dying.
He was an old, white-haired, stocky, Polish man dying of cancer. He lapsed into an agitated confusion. He was back in his Second World War concentration camp. The other patients were his fellow inmates and we hospice staff were the guards. He saw a woman who had recently died. No surprise; it happened all the time in the camp. This was my first encounter as a young doctor with post-traumatic stress disorder (PTSD) and I had no idea what to do.
Years later, I trained in Somatic Experiencing (SE), a trauma therapy. It was a queue of Aha! moments. Our mammalian body holds the key. Our life feels threatened; our physiology reacts − adrenaline, a racing heart, muscles primed to fight or flee. If we can’t, our nervous system freezes.
The stage is set for PTSD with its unholy mix of hyperarousal (flashbacks and nightmares) and hypoarousal (dissociation, depression and avoidant behaviour). How does this apply to palliative care?
In several ways:
- The immediate Traumatic Stress (TS) of a terminal illness − gnawing pain or incurability. PTSD from previous medical input − a diagnosis of cancer, a big operation, time in the Intensive Care Unit or toxic chemotherapy.
- Reactivation of past PTSD − war veterans (as above) or developmental trauma from child abuse (violence, neglect, rape).
I thought back over my time in palliative medicine. I recalled many patients. It was hidden in plain sight: PTSD. There was Barbara with her nightmare of a demon staring at her and her terror every time I mentioned cancer or dying. And Vivian, her colon cancer successfully resected, who couldn’t understand her depression until childhood memories of violence and sexual abuse surfaced. There were many more.
My colleagues said PTSD was rare in palliative care. In a study of clients referred to me by a hospice for counselling because of bereavement issues, I found 33 per cent had PTSD. (1) Alici et al (2) found 17 per cent of veterans had PTSD-related symptoms in their last month of life.
Why is this important? Because new understandings in neurophysiology have enabled PTSD therapy to leap forwards in recent years. Hospice patients could benefit from this. How? Tune into the body. Listen to its language: sensations, symptoms, emotions. PTSD affects the emotional and reptilian parts of our triune brain. Talking cognitively isn’t enough.
I’d like to tell you more about SE: about Xanthe, troubled by memories of a sexual attack, whom I watched in awe as she discharged her frozen trauma energy by gently shaking and trembling and left the session with a ton weight lifted from her shoulders; about grounding, bringing a person out of a traumatic terror trance; about carefully titrating the amount of suffering worked with to prevent overwhelm; about resourcing to help stabilisation; about unfreezing and restoring body defences. I’d like to tell you more, but there isn’t space. So maybe try the resources below …
Oh, and by the way, Somatic Experiencing works, as a recent study from Israel shows. (3)
- Heyse-Moore, LH. ‘Is Psychological Trauma in Palliative Care Underdiagnosed and Undertreated?’ Abstract. 1st European Conference on Somatic Experiencing, Denmark. 2015.
- Alici, Y, Smith, MS, Hien, L et al. ‘Families’ Perceptions of Veterans’ Distress Due to Post-Traumatic Stress Disorder-Related Symptoms at the End of Life.’ Journal of Pain and Symptom Management. 2010: 39(3): 507-514.
- Brom, D, Stokar, Y, Lawi, C, et al. ‘Somatic Experiencing for Posttraumatic Stress Disorder: A Randomized Controlled Outcome Study.’ Journal of Traumatic Stress. 2017; 30(3): 304-312.
Notes: Patient details have been anonymised.
All photos were taken by Louis Heyse-Moore.
Links and Resources
- Heyse-Moore, L. ‘Trauma and the Dying.’ Therapy Today. 2016; 27(2): 18-21.
- Levine, P. Waking the Tiger: Healing Trauma. Berkeley, California: North Atlantic Books. 1997.
- Levine, P. In an Unspoken Voice: How the Body Releases Trauma and Restores Goodness. Berkeley, California: North Atlantic Books. 2010.
- Somatic Experiencing Trauma Institute.
- Somatic Experiencing Association UK.
- SOS Internationale – the official training body for becoming a Somatic Experiencing Practitioner in the UK – provides simple, practical, and effective tools to address the symptoms of trauma.
- Contact Dr Louis Heyse-Moore DM FRCP MBACP by email.
This post does offer a new perspective on suffering at the end-of-life, and many thanks to the author for highlighting this issue and hopefully initiating a discussion around it.
However, I do have the same problems with the terminology. It has been well known that patients may suffer from bad memories or experiences in the past. This has been a constant issue in German hospice and palliative care. By now the generation of soldiers that had served in WWII, and many of whom had had terrifying experiences in the war, has died. When I started my medical career, quite often we were treating Holocaust survivors, who had their terrible stories and experiences. None of these survivors are alive anymore.
But the patients dying now have experienced the war time as children, often have been refugees at the end of the war, and in many cases bad memories that have been suppressed for decades come floating up again.
I think no human being is without negative experiences (though fortunately only rarely as bad as for the Holocaust survivors), and with defences lowered at the end of life some of these experiences will come up again. Labelling this re-emergence as PTSD in a significant percentage of patients probably may not very helpful for patients, and may even stigmatize them.
On the other hand, recognizing the problem and labelling it appropriately may facilitate talking about it. And this is certainly necessary…..
Thank you Lukas for pointing out the experience in German hospices of working with memories of WW11. I recall a lecture I heard recently given by Heike Gattnar, a German somatic psychotherapist in Munich who has worked with such survivors of WW11. She stressed the frequency of transgenerational trauma and how those living with people traumatised by the war, such as children, were, as it were, ‘infected’ by what had happened to their parents.
I quite understand your problems with terminology and the issue of labelling. To me it seems important for the following reasons:
PTSD is a recognised diagnosis whose symptoms have been described by many trauma therapists such as Peter Levine in his book, In an Unspoken Voice, or set out formally in the Diagnostic and Statistical Manual of Mental Disorders (DSM-V). It’s the same as diagnosing depression or anxiety disorders – useful because it points to appropriate treatments. There have been major advances in the therapy of PTSD in recent years. What was considered difficult to treat is now much more responsive to new approaches, particularly those that work at the body level, such as Somatic Experiencing (SE), approaches that can be adapted for palliative care patients. PTSD is common, particularly in high-risk groups such as soldiers, firemen and abused children and, from my own experience, working therapeutically with people with PTSD, is often not recognised.
I do agree that it is important not to stigmatise patients. However, the way I look at it, there is no stigma attached to PTSD. It is a reaction that can and does happen to just about anybody if they are faced with a sufficiently overwhelming threat. The people I have worked with have, to my mind, shown remarkable courage and determination in living with their condition and trying to come through it. It was only recognised as a diagnosis because traumatised USA veterans of the Vietnam war refused to be labelled as cowards or mentally unfit in some way and fought to have their condition acknowledged. To me it is more like an injury than an illness. We don’t stigmatise those who have physical injuries, neither do we need to for those who have received psychological injuries.
When the question arises about the terminology and about using the term of PTSD in the context of palliative care, I think this has very much to do with the hermeneutics of the term, meaning the changing meaning and definition of the term due to changing context. Where the term historically occurred for the first time to determine post-traumatic stress after shocking war zone experiences, history showed that this specific kind of stress can occur due to many possible and different sorts of deeply traumatic experiences. I believe it’s a matter of time until the awareness of the redefined signification of PTSD will have risen to the level it’s not straight away associated with post-traumatic stress anymore, due to traumatic war zone experiences. The logical consequence of this evolution would point to the fact that the term might not be experienced as a stigmatizing label by the patient, because the direct association with traumatic war experiences will have been disappeared. The DSM-V defines 8 necessary diagnostic criteria that create the significance of PTSD which in my opinion can very easily be met in a palliative care setting. In that way it is just a matter of an overlapping between patients with PTSD who later on in life have a need for palliative care. So far the more philosophical approach of the question. Another reason patients with PTSD might be confronted more frequently with post-traumatic stress or that it might occur more on the foreground when being in palliative care, can in my opinion be recognized in the fact that a palliative setting creates a lot of vulnerable experiences. It is many times an unclear zone between an active life (belonging more and more to a past) and death waiting somewhere on the horizon. The possible alienating, deep existential experience of this death being ‘somewhere’ on the horizon might very easily touch ground in the same mental area where post-traumatic stress is nested. Feelings and thoughts that often can be associated with the experience of palliative care (for example deep existential fear, insecurity, vulnerability,…) can in my opinion very easily remind the patient (un)consciously of traumatic situations due to the fact those traumatic situations might have caused similar feelings in the past.
EAPC BLOG REPLY 23.02.18
I agree that an increasing public understanding that PTSD is not just related to wars is important. My impression is that this is already happening: news items, when reporting stories involving other forms of threat such as domestic violence or bullying, often mention PTSD as a consequence. In my own experience, chronic developmental trauma due to sexual, physical or verbal abuse, or neglect, has been the most common reason for sufferers seeking therapy, although this too often remains hidden due to the deep yet unwarranted shame survivors experience, or because their pain was so great that they dissociated and shut off the memory from their consciousness. This defence may then break down in the face of a new crisis such as incurable cancer.
An issue with the DSM-V criteria for PTSD is the strictness of its specification as to what constitutes a threat, which it defines as being exposed to death, serious injury, or sexual violence, whether this be threatened or actual. Therapists working with PTSD, however, repeatedly stress that it is the perception of the event that is crucial, how it is interpreted. Peter Levine, in his book, Waking the Tiger, cites the case of a two-year-old boy who fell and cut his chin. In the ER he was strapped to a papoose to stop him struggling to escape so that stitches could be inserted. He was terrified and developed PTSD afterwards (which responded to treatment with SE). He wasn’t actually threatened with death or serious injury, but he thought he was, and that was enough.
I quite agree that memories of a past traumatic threat to life can be re-evoked when a person is dying. One exception is people who undergo a blissful near-death experience (NDE) following some major physical trauma or severe illness and who may report that they have lost all fear of death.
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