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Buried trauma can impact hospice patients in unexpected ways
Here's how experts recommend handling it
Hospice professionals need to be aware that end-of-life patients sometimes are dealing with post-traumatic stress from previous traumas, whether they served in a war or were abused as children. These buried memories and feelings can complicate physical symptoms, including patients' pain and suffering.
Some types of behavior often thought to be characteristics of a certain generation could be symptoms of the patient suffering through this unspoken trauma, says Ric Baxter, MD, hospice medical director and director of palliative care services at St. Luke's Hospital and Health Network in Bethlehem, PA.
When St. Luke's opened an inpatient hospice facility about two years ago, Baxter began to have unanswered questions about some patients' behavior.
"Early on, there was a particular patient who really sparked this gut feeling that something significant was going on," Baxter recalls.
The patient was an 84-year-old woman with pancreatic cancer, and she was admitted to the inpatient hospice unit because of intractable pain, nausea, and vomiting, Baxter says.
Her son was the caregiver, and he was overwhelmed, Baxter adds.
"Her presentation was of a patient who could only make eye contact with her son," he says. "And she was almost writhing in pain, but would only acknowledge that it hurt a little."
Also, the woman couldn't be left alone at night. As her story was revealed, the staff learned that the woman had been in a violent relationship for more than 20 years; her children had been raised in that environment. The care-giving son exhibited high anxiety.
Vollmer had asked the woman some open-ended questions about her life and her marriage, and as they spent time together, the woman confided to having an abusive marriage in which her husband would lock her in closets and batter her physically and emotionally — even in front of the children.
"So I went back to the team and said, 'Here are the things going on in her heart and head,'" Vollmer says.
The hospice nurses had wanted to document the woman as in need of a routine level of care because her symptoms could be managed with medication, Baxter notes.
"Our position was that her nonphysical symptoms remained acute for two-to-three weeks, and we needed to look at her total suffering, including psychological, emotional, and spiritual suffering, which required an extra level of care," he says.
The woman needed help in alleviating her fears and in gaining trust, Vollmer says.
So Baxter and Vollmer helped to develop a plan of care that included using volunteers who would be dedicated to the patient, as well as having hospice staff visits timed in such a way that the woman was never left alone for more than 20 minutes at a time.
"We left the TV and lights on for her at night," Vollmer recalls. "And if I saw her in the morning, I'd say I'd be back in the afternoon, and then I'd really do that, providing follow-through."
The extra care included assisting the son so that he could be with his mother in a way that was comfortable for them both, Vollmer adds.
The patient told the hospice workers that being there was the best thing that had ever happened to her, she says.
As the patient's life story unraveled, it became clear that the hospice team sometimes missed important cues about a hidden trauma in patients' lives, he says.
"We needed the hospice staff, particularly nurses, social workers and administrative staff, to see these patients in a slightly different light, in terms of the amount of suffering they experienced related to non-physical symptoms," Baxter says.
"Very quickly, we began to see somewhere around 50 percent of the people who were admitted had some kind of story, and it frequently was a silent story," he adds.
Hospice staff observed symptoms that didn't quite fit with the physical aspects of the disease, and they found that patients sometimes would respond to hospice care and services in an unpredictable way, says Susan Vollmer, MA, MDiv, BCC, chaplain and bereavement coordinator at the Hospice of the VNA of St. Luke's in Bethlehem.
"A lot of my work with families is in life review," Vollmer notes. "It includes things that were hard to go through, things they regret they had to go through."
As she did this work with hospice patients, Vollmer began to hear stories about traumatic events, including natural disasters, neglect, abuse, and war experiences.
Here's a sample look at a tool designed to assess traumatic life experiences:
Hospice uses it to help direct care.
A Tool for Assessing Traumatic Life Experiences
Family is someone:
Source: Susan Vollmer, MA, MDiv, BCC, Chaplain and Bereavement Coordinator, Hospice of the VNA of St. Luke's, Bethlehem, PA, and Ric Baxter, MD, Hospice Medical Director and Director of Palliative Care Services, St. Luke's Hospital and Health Network, Bethlehem.
"It became apparent that there were symptoms related to these stories," Vollmer says. "At times we had people with symptoms who didn't have any stories, so we became more intentional about working with patients and families and finding out what they could tell us about the patient's past."
Through observing these symptoms and seeing in anecdotal evidence how frequently certain symptoms were tied to traumatic life experiences, Vollmer and Baxter developed a two-page tool for assessing traumatic life experiences.
They also developed a one-page form that instructs hospice staff on how to ask for clarifying information from patients who have symptoms of past trauma and PTSD.
Some of the suggestions included in the form are as follows:
As patients decline, their usual defenses against PTSD symptoms also decline, and they have less of an ability to control what is happening, which increases the symptoms, Vollmer says.
"People work hard to keep symptoms and painful memories at bay, but once you can't do that as well, the memories don't go away," she explains. "It's their opportunity to rise up because they can't be held down anymore."
As a result, patients may have flashbacks and have panic attacks at night, Vollmer adds.
The traumas largely have been suppressed because of society's judgments and inhibitions about certain types of victimization.
The victims themselves may have felt they deserved the trauma that happened to them, and they certainly know that it's hard for other people to hear their stories, Vollmer explains.
"There's a huge amount of shame attached to the individual and the person's experience, and over time, nobody really wants to listen to this, so they stop talking and bury it," Baxter says.
For example, women in abusive relationships often experience having people tell them to get away from the man without really listening to who the woman is and where she is with regard to independence, Baxter explains.
Baxter offers this case study of a hospice patient with suppressed trauma that was discovered because of physical and behavioral symptoms:
The woman who was in her fifties had a brain tumor. She'd been referred to the inpatient hospice unit from the hospital because of troubling hallucinations and difficulty walking, Baxter recalls.
The woman was married with several children, including a stepchild.
When Baxter met with the woman at the initial assessment, a female social worker accompanied him.
"Every time I asked the patient a question, she would answer the social worker, and she could not make sustained eye contact with me at all," Baxter says.
"When we asked her a general question about herself, and this is a woman who knows she is dying of a brain tumor, her story was about her mother's death two years earlier," Baxter adds. "When we asked her to tell us about her relationship with her mother, her description of that relationship is when she was a young child, and she said her mother couldn't be without her."
As the woman spoke about her life, she revealed that she had been married three times, all to abusive men, including her current husband.
"The first husband beat her when she was pregnant, and she lost the child," Baxter recalls. "The third husband was abusive to her and their children."
When asked about the abuse, the husband said he had stopped the abuse eight years earlier when he stopped drinking, and the patient confirmed this. Also, the patient wanted to return home, but she needed to know she'd be safe, Baxter says.
"She was able to attend a group meeting to say to her husband, 'I need to know you won't hurt me, that you won't drink, and that I can be safe,'" Baxter says.
It took some assistance from Baxter and the hospice staff before the woman had the courage to make her end-of-life desires known.
"The woman sat in bed and pulled up her legs, almost in a fetal position, and she kept her whole body drawn in," Vollmer says. "She probably had never confronted a male before in her life, but she did it."
The patient's husband agreed to her terms, and he brought her home, where she stayed for over a month. Hospice staff continued to visit her and would ask her about her safety at each visit, Baxter notes.
"We were very intentional about having a presence in the home on a regular basis, so the social worker made visits more often, and the home health aide visited at times of the day when there wasn't going to be any other outside help," he explains.
Finally, the woman returned to the inpatient unit to die, but by then her husband's behavior had changed dramatically, Baxter and Vollmer say.
"He was an entirely different person," Vollmer says. "I met him in the hallway on the day she was brought back to us, and he stood in the hallway and cried."
This was a man who would never have shown that level of vulnerability a month earlier, she adds.
"He sat with her the entire time when she was dying," Vollmer says.
As the woman was dying, she asked her husband to promise not to drink and to be there for the children and grandchildren, and he made her the promise, while he was holding her hand and telling her how much he loved her, she says.
The hospice staff witnessed the husband's transformation from an aggressive, arrogant, and intimidating man to a humble, vulnerable man, Baxter says.