PTSD and Prolonged Grief in Caregivers

Palliative care is designed to provide comfort and peace to individuals facing terminal illness and end-of-life transitions. Caregivers who watch over someone in palliative care often get to spend precious moments with their loved ones in ways that would not be possible in a hospital or nursing setting. Individuals who are dying can benefit from palliative care by having those closest to them with them during their last days allowing for final wishes to be expressed and sentiments to be shared.

When death is sudden and tragic, as with an accident or unexpected illness, caregivers can experience shock and traumatic responses. Prolonged grief (PGD), also known as complicated grief, can occur when symptoms of grief are exacerbated and persist over lengthy periods of time. Experiences such as reliving the death event; being reminded of the death through mental, visual, or auditory stimuli; and even experiencing intrusive thoughts are all symptoms of posttraumatic stress (PTSD), which is not uncommon among bereaved parents and survivors of disasters or abuse.

But until now, few studies have examined whether or not caregivers of individuals who die expectedly are at risk for PTSD. To explore this issue, Christine Sanderson of Cavalry Health Care Sydney in Australia recently interviewed 32 caregivers grieving the loss of a patient who died from ovarian cancer six months prior.

The caregivers’ responses were assessed for signs of grief, emotional reactions to stimuli, language, and trauma response. For the most part, Sanderson found that the caregivers had high levels of resiliency, although some exhibited symptoms of PGD and PTSD. Specifically, trauma symptoms included strong reactions to sounds, smells, and sights that caregivers remembered from the palliative setting and also intrusive thoughts related to the death and the predeath period.

Sanderson believes that palliative care can be a cathartic experience for some, providing time for a dying person to be with family in the last days of their lives. But for some caregivers and loved ones, watching the death of someone close to them, while making no attempt to stop it, can be excruciating and lead to shock and extreme emotional distress.

Because caregivers are at increased risk for negative physical and mental health outcomes when compared to those who are not caregivers, exploration of resiliency or susceptibility after a patient’s death is essential. Sanderson added, “Skillful care of caregivers requires an understanding of the nature of their experiences, if we are to reduce traumatisation of vulnerable individuals.”

Reference:
Sanderson, Christine, et al. (2013). Signs of post-traumatic stress disorder in caregivers following an expected death: A qualitative study. Palliative Medicine 27.7 (2013): 625-31. ProQuest. Web.

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  • Hollis

    July 2nd, 2013 at 1:09 PM

    I am a little confused as I would have thought that someone in a cergiver mode, having watched the general health decline of this person for a period of time would have prepared themselves for this ultimate end and would have no chance of developing PTSD.

    I guess I have always thought (apparently wrongly) that PTSD would occur in someone after an event that was shocking and unexpected- but if someone has been in this kind of care situation then death can come as no big surprise.

    It’s really very sad to know that for many people there is still no healing even after the pain and the suffering of the one who has died has ended, because now they are having to tackle their own feelings of sadness and maybe even guilt.

  • Lisa

    October 21st, 2014 at 3:54 PM

    The reality is that much of the trauma is from the suffering that comes before death. In my case, I still have my mother here with me, but I suffer many symptoms of PTSD, although as time goes on I am doing better. For years, my mother was in and out of the hospital, due to complications due to her MS and prescribed medications. She’s been bedridden since I was 14 years old, it’s been 20 years of caring for her. There have been times she was suffering so badly even hospital nurses were in tears. Imagine your mother being kidnapped and tortured for hours while you sit and watch, unable to help make the pain stop. There’s blood all over your shirt because the IV came out and her blood spurted out all over the place. That’s what it was like. Her arms had to be tied to the bed so she would not pull out her IVs. She yelled and cried, unable to verbalize her needs or feelings. This went on for days, then weeks, then months. My dad and I took turns staying with her around the clock. My longest stay in ICU with her was a week and a day. I didn’t even try to shower. All I could do was stay by her side and hope I’d think of something to tell the doctor that might help. It gets to where you would do anything, ANYTHING to see the suffering stop. I’d gladly have given all my limbs if it would have made her better. Honest to god it’s like being forced to watch your loved on be tortured and feel helpless to stop it.

    Now imagine things get better. Finally. The suffering has ended, and you all go back home with the hopes that things will finally get back to normal. Oh, wait, wait, it’s back. Time to go back to the hospital for another week of this torture. Back and forth, home to ER to ICU, back to home again, and as soon as you think you can breathe, you’re back again. Your adrenaline is constantly pumping, you can’t sleep because what is she gets sick again on your watch? Even though you would REALLY love to get some sleep, since hospitals are pretty much the hardest place to get sleep ever. You’re exhausted, you’re tired, you start feeling sorry for yourself. You’re frustrated. You feel guilty because all you want to do sometimes is leave and go have some fun or relaxation like everyone else. But you can’t because you are needed. By the person you love the most. Because they are suffering. This pattern went on for about 3 years. That’s after already having survived similar times in the past 15 years before that. It wears you down. It can mess you up. After my moms illness, as she FINALLY recovered, it took me almost 2 years to get back on my feet again.
    So in my opinion, it’s the prolonged and sometimes violent suffering that leads to PTSD, not just death.

  • casey

    January 6th, 2015 at 11:27 PM

    I completely agree with you. I am offended that people think its easier to deal with death in a hospice. Its not. Like you said, I saw my 56years old mom being squeezed to death and not able to do anything to help her. Its like watching the person you love the most being murdered in slow motion. No one can be prepared for death until it happens.

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