A nursing home resident and outspoken advocate for other residents explains how trauma, which is all too common among her peers, can lead to misdiagnoses and inappropriate care. The solution, she says, is trauma-informed primary care in nursing homes. By Penny Shaw, PhD
Making the transition to life in a nursing home can be highly stressful. It’s a dramatic life change that new nursing-home residents are not prepared for. Deterioration in health, feeling abandoned by family, wanting to remain at home in a familiar environment, loss of privacy when sharing a small space with a stranger, a shattered sense of security and role in the community – these are all part of the transition into a nursing home. The loss of choice and control to choose previous routines and preferences, as well the numerous institutional rules, policies and practices to follow can lead to adverse emotional reactions. Primary care physicians using a trauma-informed approach to care successfully address feelings of being overwhelmed which, in long-term care facilities, are referred to as relocation stress or transfer trauma.
Transfer trauma has a wide range of physiological, cognitive, mood, behavioral and social manifestations: fatigue, appetite and digestion problems, headaches, sleep disturbances, confusion, difficulty concentrating, shock, anxiety, depression, and poor hygiene.
I personally suffered from transfer trauma when, after a year in a respiratory hospital where I knew the staff well, I was transferred to a nursing home. I remember the fear I had the night before leaving, when I talked to my night nurse about not knowing where I would be going. My stress was such that upon arrival at the nursing home, I’m told that I was confused and waving my arms. I had no idea where I was. I didn't talk and the staff gave me a communication board. They thought I was unable to speak because of a tracheotomy I had. But actually, I was traumatized. My functioning declined. I had been active in the respiratory hospital – had gotten up to do watercolors, talked to staff and patients, but now I was bedbound. As I later learned from reading my medical record, I had been misdiagnosed with psychosis and given an antipsychotic I didn’t need.
Other residents in the facility where I live are often traumatized. An older woman unable to walk after a fall wanted to go home and was sad, thinking this was the end of her life. Another woman was distraught saying she'd lost her home, now lived in a cubicle and was alone, as her daughter wasn't visiting her enough. A woman asked me her first day with us "Is this a prison? Can I leave if I want to?" I reassured her she could. A man puzzled over how he had survived a major head injury, only to end up in a place where people told him what to do. Another man, tragically, who could not accept that his wife had placed him in a facility, deteriorated and died.
Primary care physicians familiar with trauma recognize the varied symptoms and use a trauma-informed approach for diagnosis and treatment. During assessments, they look for signs of trauma. They ask questions of residents. In clinical decision-making, they identify symptoms indicative of trauma and diagnose correctly. They realize that mood disturbances might not be a sign of mental illness like bipolar disorder, but instead are normal given the circumstances. In this approach, physicians use the appropriate standard of care – non-pharmacological first, avoiding unnecessary drugs with a potential for adverse side effects, thus preventing additional health problems. Trauma-informed care plans connect physical, cognitive, mental and behavioral health to promote healing, eliminating or delaying progressive disability.
Trauma-savvy physicians also provide clinical leadership, guidance and support to staff in training on trauma and trauma-specific interventions. Education changes staff perspective. They become more sensitive, caring and tolerant of symptomatic behaviors, no longer seeing residents as behavioral problems, complainers or troublemakers. Physicians also help staff develop competencies in trauma-specific treatment techniques to develop coping strategies including emotional support, by talking to residents so they can express and have their feelings validated as normal. Other techniques include orienting, supporting and reassuring residents that they understand what happened to them. These interventions start the process of re-establishing a sense of physical and psychological safety and developing coping strategies. Giving residents a voice and some control reduces the power differences between staff and residents. Empowering residents can counter feelings of powerlessness and decreases learned helplessness and unnecessary dependency.
As I have seen in my facility, residents can learn a new outlook and become more optimistic and hopeful about recovery. They become more motivated, build a new lifestyle as close as possible to what they lived before, and usually accept their situation. The journey of recovery is incremental, and if distressing symptoms persist, professional psychotherapy is arranged.
Trauma-informed primary care physicians also realize that a nursing home is a resident's home, and that environment affects mental health and well-being. Design features of the built environment – both architectural and interior – have clinical utility. Windows with exterior views reassure residents they're still part of the larger world. Natural light, pleasant resident rooms with soothing paint colors of blues and greens, and homelike furniture are comforting and uplifting. Access to the outside and gardens provide a welcoming, restorative encounter with nature. Giving residents a choice in wall art and room furnishings and providing operable windows for fresh air give residents a sense of personal control over their environment. Physicians should encourage facilities to allow for patient choice in the surrounding environment as much as possible.
The significant effects of trauma-informed care, policies and environment are numerous: improved physical and cognitive functioning, psychological and emotional stability, fewer maladaptive behaviors, improved social interactions, staff and resident satisfaction and lower mortality rates.
I encourage primary care physicians, especially those who care for patients in nursing homes, to seek more information about trauma-informed primary care. Too often health care providers jump to the conclusion that people in this population simply have mental illness or cognitive decline when it is trauma causing these symptoms and it can be treated.
More information on trauma-informed care is available at the Substance Abuse and Mental Health Services Administration's National Center for Trauma-Informed Care and the National Council for Behavioral Health's Trauma-Informed Primary Care initiative.
Penelope Ann Shaw, PhD, is a former teacher of English as a second language and a doctor of French language and literature. Now a nursing home resident, Shaw is a board member of the Massachusetts Advocates for Nursing Home Reform and of the Disability Policy Consortium of Massachusetts. She was named a “Trailblazer in Elder Care” by the U.S. Department of Health and Human Services’ Administration on Aging’s Administration for Community Living. She is a 2016 recipient of a National Consumer Voice for Quality Long Term Care Leadership Award.