There is a dearth of literature exploring the impact of trauma history on patients’ experiences of life-limiting illness and end of life. The existing evidence has thus far demonstrated that these patients are at risk of retraumatization, symptom recurrence, and increased rates of distress and suffering at the end of life.1 A comorbid diagnosis of posttraumatic stress disorder has been associated with lower satisfaction with emotional support provided through palliative care, communication challenges with providers, and the perception of less attention being paid to the patient’s dignity and well-being.2 Patients with a trauma history and associated symptoms also report higher levels of pain at the end of life.3 These effects seem to worsen as patients deteriorate, with 1 review positing that reliving trauma near death is a recognized phenomenon, with increased pain, dyspnea, hyperarousal, and sleep disturbance.4 Fortunately, it was also found that by improving clinical knowledge among providers, this impact can be mitigated with appropriate management.4
Clinical identification of at-risk patients along with timely, appropriate, and consistent implementation of a trauma-informed approach to routine primary care is a knowledge gap that should be addressed to improve quality of life for patients with life-limiting illness, particularly in its final stages. Currently, literature on trauma-informed palliative care is centred within the scope of social work, with most of the evidence on its clinical utility represented in social work journals.4-6 While not all family physicians are comprehensively trained in trauma-informed care (TIC), there are several guiding principles that can be extrapolated from the existing literature. When applied routinely and within a multidisciplinary team, these principles can alleviate distress and limit more severe recurrence of trauma-related symptoms.7 When used, the term trauma in this paper refers to any instance experienced by an individual as physically or emotionally harmful or life threatening that has lasting adverse effects on functioning and mental, physical, social, emotional, or spiritual well-being. Trauma-informed care refers to an approach that does not aim to address trauma directly, but which recognizes trauma as an essential consideration in optimal care.8
Case description
The patient was a 56-year-old woman who had a metastatic uterine perivascular epithelioid cell neoplasm, with a large uterine mass measuring 12 cm. During staging investigations, she was found to have several sites of lytic bone metastases and pulmonary metastases. During her first outpatient palliative care consultation, she disclosed her history of trauma, including verbal and sexual abuse as a child and an adult. She endorsed a history of depressed mood, anxiety, claustrophobia, and intermittent periods of suicidal thoughts. Throughout her life, she had extensive non-pharmacologic and pharmacologic treatment, including psychotherapy and participation in a hospital-based trauma program, and multiple drug trials including venlafaxine, sertraline, paroxetine, vortioxetine, lorazepam, cannabinoids, and zopiclone. These interventions were either initiated or supported by the patient’s family physician, with whom she had a consistently trusting and collaborative therapeutic relationship. During the initial consultation, the patient stated that after years of managed symptoms that allowed her to function in her career and personal relationships, and to live independently, she was experiencing an abrupt and substantial recurrence of her past symptoms. Specifically, she endorsed discomfort with meeting with male health care providers, claustrophobia with computed tomography and magnetic resonance imaging scans, and preoccupations with dying, with associated panic and hypervigilance for physical symptoms. Her affect during clinical encounters was often dysphoric.
Discussion
Patients with a trauma history have been found to be substantially more likely to experience fatigue and depression, and have elevated levels of inflammatory markers.6 The diagnosis and disease trajectory of life-limiting illness can retraumatize a patient, resulting in the recurrence of symptoms such as flashbacks, catastrophizing, death anxiety, and hyperarousal that may have been controlled for years, as with this patient. At my centre, I aim to develop coordinated care plans for these patients, which include family medicine, nursing, social work, and palliative care to first prevent retraumatization and, second, to alleviate distress and suffering.
There are 6 principles to providing generalist TIC: safety; trustworthiness and transparency; peer support; collaboration and mutuality; empowerment, voice, and choice; and cultural, historical, and gender issues.7 Practically, for this patient these were enacted through simple and deliberate considerations such as ensuring the patient was only seen in private clinic rooms rather than in the chemotherapy treatment areas, limiting the introduction of new providers such as junior medical learners, and notifying the patient in advance if a new male provider would be introduced. Transitions in care were also completed gradually. When this patient was referred from my outpatient clinic to in-home palliative care, I remained involved through several supportive follow-up calls until the patient felt comfortable fully transitioning to the new provider.
Essential to this approach was the consistent and longitudinal involvement of the patient’s family physician. This patient underwent multiple transitions in her care, which was delivered in various settings, typical of patients with advanced life-limiting illness. During hospital admissions, the shift to community-based care, and eventually the shift to end-of-life care in hospice, the patient’s family physician provided a stabilizing influence and assisted with health system navigation and coordination, even while her acute medical management was provided by other specialists. Shared decision making regarding place and goals of care, as well as the eventual transition to comfort-focused end-of-life care, was conducted with frequent check-ins and debriefs with her family physician. This aligned with the TIC principles of trustworthiness, collaboration, and choice, and alleviated distress regarding the patient’s real and perceived loss of control in the face of a terminal illness.
In my experience with this patient and others, a history of trauma is associated with the presence of total pain, described in the literature as a pain experience that incorporates dimensions of physical, social, spiritual, psychological, and existential suffering. Total pain, consistent with TIC generally, requires a multimodal approach, incorporating analgesics, antidepressants, and psychotherapeutic tools such as cognitive behavioural therapy and dignity therapy, and can be augmented with ketamine and potentially psilocybin, the latter of which is currently only available in Canada through clinical trials. Family physicians are well placed to initiate early referrals to psychotherapy and programs and trials offering ketamine and psilocybin. The emerging evidence on psilocybin has yielded promising results regarding its benefit in relation to existential distress.9,10 Dignity therapy, particularly for this patient population, should also be initiated early, even for those patients who have previously undergone cognitive behavioural therapy or other treatments for mood symptoms.11,12
Case resolution
Following the patient’s initial consultation with palliative care, it was identified that the number of new health care providers introduced in the interdisciplinary oncology clinic was overwhelming and triggering for her. Given her strong therapeutic relationship with her family physician and psychotherapist, it was determined that any additional interventions should be grounded in her primary care support system and that additional referrals should augment, rather than replace, this safe, trusting, and collaborative primary care relationship.
Consequently, the patient was referred to a psychiatrist who specialized in psychosocial oncology and TIC, but was also encouraged to maintain close, longitudinal follow-up with her family physician and psychotherapist. She began meditation through a cancer support program. There was modest improvement to symptoms with the uptitration of vortioxetine, aripiprazole, clonazepam, lorazepam, and zopiclone. Most of the clinical encounters centred on the patient’s rumination on dying and required frequent redirection, as she perseverated on minor physical symptoms as indicative of rapid decline, even during periods when her disease was objectively stable. Consistently, she described her mood symptoms as the primary source of suffering. As her disease progressed, multiple conversations with the patient and her family physician led to the decision to move in with her mother to have increased familial support and to promote feelings of safety. A referral was made for home-based palliative care, and she was enrolled in a trial examining psilocybin for management of existential distress. After 2 brief hospital admissions complicated by panic episodes, the patient opted for comfort-focused care in hospice. Roughly 18 months following her diagnosis, she died in hospice, in keeping with her wishes.
Conclusion
The effect of past trauma on patients’ experiences of life-limiting illness cannot be understated and should be further explored. This case demonstrates the re-emergence of symptoms of intrusion, hyperarousal, and increased anxiety that created a barrier to a “good death.”6 More study is needed, particularly in marginalized groups at statistically higher risk of trauma, including women and girls, Indigenous populations, and racialized and minority groups.4 Currently, there is no validated tool for screening palliative patients for a trauma history, which would allow for more efficient identification of individuals at risk.
With increased awareness and collaboration with other health care providers and community supports, TIC is a valuable mechanism by which palliative patients can be cared for compassionately and presents a way forward in relieving suffering and preserving dignity. This case illustrates how family physicians can integrate TIC into routine management of patients with life-limiting illness.
Notes
Editor’s key points
▸ Patients with a history of trauma living with and dying of a life-limiting illness are at risk of retraumatization or exacerbation of trauma-related symptoms, with associated impact in both the physical and psychological domains. This impact becomes more pronounced as a patient approaches the end of life.
▸ Family physicians and palliative care physicians are well placed to identify and routinely incorporate trauma-informed care into their practices to alleviate distress.
▸ Providers should consider safety; trustworthiness and transparency; peer support; collaboration and mutuality; empowerment, voice, and choice; and cultural, historical, and gender issues to effectively care for patients with a history of trauma.
▸ Multimodal approaches include collaboration with other providers to prevent retraumatization, pharmacologic management, interprofessional referrals including social work and psychiatry, and nonpharmacologic resources such as psychotherapy, dignity therapy, and mindfulness.
Points de repère du rédacteur
▸ Les patients qui ont des antécédents de traumatisme, vivent avec une maladie limitant l’espérance de vie et sont en voie d’en mourir courent le risque d’une récurrence du traumatisme ou de l’exacerbation des symptômes liés au traumatisme, de même que leurs répercussions inhérentes sur le plan physique et psychologique. Ces impacts s’intensifient à mesure que le patient approche de la fin de vie.
▸ Les médecins de famille et les médecins en soins palliatifs sont bien placés pour identifier et intégrer systématiquement dans leurs pratiques des soins éclairés par les traumatismes dans le but d’atténuer la détresse.
▸ Les cliniciens devraient prendre en compte la sécurité; la fiabilité et la transparence; le soutien par des pairs; la collaboration et la réciprocité; la responsabilisation, le droit de parole et le choix; et les enjeux culturels, historiques et liés au genre pour soigner efficacement les patients ayant des antécédents de traumatisme.
▸ Au nombre des approches multimodales figurent la collaboration avec d’autres professionnels pour prévenir une récurrence du traumatisme, la prise en charge pharmacologique, les demandes de consultations interprofessionnelles, y compris en travail social et en psychiatrie, et les ressources non pharmacologiques, comme la psychothérapie, la thérapie de la dignité et la méditation consciente.
Footnotes
Competing interests
None declared
This article has been peer reviewed.
Cet article a fait l’objet d’une révision par des pairs.
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