Here are the symptoms that indicate a potential trauma
Experts explain how and why
Past traumatic experiences can result in current physical, emotional, and behavioral symptoms among hospice patients.
For example, a patient who once experienced sexual abuse as a child might be afraid of having the lights out in her room, or she might have trouble speaking with male health care practitioners.
Here are some of the symptoms hospice staff might encounter among patients who have experienced past and even forgotten trauma:
Uncontrolled pain: "This is pain that is out of proportion to the physical findings," explains Ric Baxter, MD, hospice medical director and director of palliative care services at St. Luke's Hospital and Health Network in Bethlehem, PA.
"That can work either way: It can be pain that is at a much higher level than the physical findings suggest," he adds. "Or it can be that the physical findings indicate there should be a lot of pain, and instead, the patient is saying, 'I'm fine.'"
The clue is the disconnect between the symptoms and the physical findings and pathological processes under way, Baxter says.
"Suppose you walk into a patient's room and ask if she is experiencing any pain, and she says she's fine, but her body and face are telling you something different," Baxter says. "So the question is why some people can't report their own pain and other people can take the smallest pain and over-report it?"
In the past, hospice professionals have attributed any under-reporting of pain to a generational stoicism, but they shouldn't make that assumption, Baxter says.
"Often these characteristics are assigned to the World War II generation, and we say they tend to be stoical," Baxter says. "Or with dementia patients, we say they have terminal agitation."
Symptom complexes are stereotyped, and this makes the hospice staff less sensitive to other meanings behind the symptoms, he says.
"They think we just need to medicate the symptoms away," Baxter says. "What we're saying is that maybe it's not just a stoical World War II veteran, and maybe it's not just terminal agitation."
Instead, the symptoms might be related to the process of emotional memories haunting patients more intensely as they are dying.
"Those coping mechanisms break down, and we see manifestations of underlying trauma that they've carried for years," Baxter explains.
When a patient under-reports pain, it begs the question: "Do we really know what the source of this response is, and can we know for sure unless we ask the patient questions?" Baxter says.
Often, hospice patients will not consciously know their own traumatic stories, and yet these buried feelings and experiences are impacting their end-of-life experience, he says.
Agitation and anxiety: Hospice professionals often see patients who become agitated and are unable to soothe themselves, says Susan Vollmer, MA, MDiv, BCC, chaplain and bereavement coordinator at the Hospice of the VNA of St. Luke's in Bethlehem.
"We see people who have an inability to see the world as a safe place, and they have an inability to trust others," Vollmer says. "They are suspicious and fearful about anyone who walks into their room." In the hospice's inpatient unit, there are shift rotations, so a hospice patient might have a number of different people walking into his or her room, she notes.
"Patients can't get out of bed, and they don't know these people, so that can kick into their fears," Vollmer says.
Hospice patients who have suffered from past traumas might have a sense of hypervigilance or hyperarousal, Vollmer says. Every noise and person they encounter results in heightened anxiety.
"People can become irritable and withdrawn," Vollmer says. When a hospice nurse observes anxiety in a patient, he or she could ask for a social worker or chaplain to visit the patient and see if there's anything they can do before medication is prescribed, Vollmer says.
"Sometimes, the conversations and support a patient receives can change their need for medication," she adds.
Numbness and disassociation: Another symptom you might note is an emotional blankness, as though the patient has checked out, Vollmer says.
"They can't tell you how they're feeling, and their emotions are far away," she explains. If you were to ask this patient how he felt about dying, he'd say, "I think it's ok."
While some patients might actually feel this way, this reaction also could indicate that the patient has had an unresolved traumatic experience, Vollmer says.
"Quite a few times we've seen disassociation, which is a psychological term, but is very important," Vollmer says. "When you're talking about post-traumatic stress disorder, this is a step back from reality, maybe with memory gaps."
The person might start to tell a story about his or her past, but there will be memory gaps and a flat affect.
"Someone will need to communicate to you a horrific event, but he'll tell it to you like he's reading a grocery list," Vollmer says.
"Or the person will tell the story in the third person," Baxter says. "It's like they're talking about somebody else they witnessed and it's not about them."
Disassociation is a creative way for the mind to protect the person who has suffered the trauma, Vollmer explains.
"Whatever the experience and emotions are, it's too painful to really be there, so the mind says, 'I'll keep you safe and put it at a distance,'" she adds.
Past self-destructive and other coping behaviors: Another clue that someone has undergone PTSD is a medical history of substance abuse, depression, or anxiety, Vollmer says.
"We may also see people who are very controlling and really need to be in charge," she says.
"In my mind, being controlling is a safety issue where the patient thinks, 'I need to take charge because you might not do the right thing,'" Vollmer says.
For example, a patient might not want to have a male worker or doctor in the room, Baxter says.
"The female patient might be able to make eye contact with the female nurse, but she can't look at her male doctor," Baxter says. "Her body is relaxed when the nurse is in the room, but when the doctor walks in, she's rigid and on guard."
Other symptoms might include obsessive compulsive disorder, panic disorders, and self-harming behaviors, such as cutting or burning Vollmer says.
"Sometimes their self-harm might be in terms of how they handle their illness," Baxter suggests. "A woman, who has breast cancer growing that she's known about for years and never said anything about to anyone, is [engaging] in a form of self-harm."
- Difficulty with sleeping: "People who have difficulty with sleeping or whose anxiety level goes up when the sun goes down often are people who've experienced abuse or violence that happened at night," Vollmer says. "The night time is enough of a trigger for their symptoms and behaviors to rise a little higher."
Whenever these or related symptoms are observed in a hospice patient, it's important to encourage the patient to tell his or her story, Vollmer and Baxter say. "Telling stories is an important part of what hospice does," Baxter says.
"In upwards of 50% of patients, we find that stories are important to the patient's dying process." It's also important for hospice staff to be offered support after listening to these often sad and disturbing stories.
"It's hard to hear those stories," Vollmer says. "When someone trusts us enough to give us their story, what do we do with it and what do we do to take care of ourselves?" Hospice workers need to support each other and acknowledge that hearing these life stories can be upsetting, Vollmer adds.
"It's not something they need to take home to keep them up at night," she adds. "It's important to have the gift of a hospice team and to rely upon our team members, as well as to know how to care for ourselves and to receive the support we need."