Narrative Medicine perspectives on patient identity and integrative care in neuro-oncology.

Narrative Medicine sessions can encourage patients to rediscover personal identity and meaning by telling or writing their stories. We explored this process to improve care and quality of life for brain cancer patients in an academic neuro-oncology program. Brain cancer and its treatments may threaten a patient's quality of life and sense of self in many ways, including impaired cognitive skills, loss of memory, reduced coordination, and limited capacity for self-expression. The impact of symptoms and side effects on quality of life must be evaluated in terms of each patient's identity and may be understood in terms of each patient's story. Insights from Narrative Medicine visits may also be helpful for the treatment team as they seek to assess patient needs, attitudes, and abilities. We provide case-based histories demonstrating applications of Narrative Medicine in the care of patients with brain tumors whose sense of self and quality of life are challenged. The cases include managing frontal lobe syndrome of loss of initiative and pervasive emotional apathy with his wife and young children, regaining a meaningful activity in a patient, re-establishing self-identity in a young woman with ependymoma, and improving spells with coexistent epilepsy and psychogenic non-epileptic seizures (PNES).

Breaking the spell: Narrative Medicine applications for Psychogenic Nonepileptic Seizures (PNES).

Narrative Medicine (NM) sessions draw out the patient's narrative of illness or injury and treatment in the context of the patient's whole life story. The focus is to discover topics and areas in the patient's narrative that the patient needs to explore. PNES may be understood in many cases as a communication disorder in which distress is expressed somatically in a pathological way instead of an adaptive and verbal manner. Patients with PNES are frequently misdiagnosed, and accurate diagnosis may be delayed for many years. PNES may cause severe disruption of the patient's quality of life in terms of employment or schooling as well as relationships and activities of daily living. NM sessions encourage patients to communicate more effectively about their unspeakable distress and reclaim their lives from the communication disorder of PNES. Narrative writing exercises have also proven helpful for patients facing a variety of traumas and major stresses in situations similar to those faced by patients with PNES. This paper is a narrative review with an illustrative case report indicating NM applications to help a patient with PNES to communicate about a traumatic past that has been avoided and address psychogenic symptoms.

Narrative medicine applications for neuro-oncology patient identity and quality of life.

BACKGROUND: We explore the applications of Narrative Medicine (NM) in the clinical care of brain cancer patients whose self-identity and quality of life are challenged by their disease and treatment. This paper considers how NM may help patients retain and rediscover self-identity during treatment. METHODS: We performed a retrospective review of NM sessions at our institution in 2016 with focus on life perspectives and priorities along with outlook or attitude and any changes in their symptoms and possible impact on their lives. RESULTS: The narratives shared by four brain cancer patients provided examples of loss of self-identity during illness and treatment, along with ways that NM sessions encouraged patient resilience and discovery of meaning. CONCLUSIONS: NM sessions made visible contributions for the patients mentioned in these case studies. Understanding the patient's story is critical for evaluating the significance of impairments due to brain cancer and treatment relative to the patient's unique sense of self and quality of life. NM is at the nexus of clinical management and quality of life concerns for brain cancer patients. Insights from NM sessions may also help the treatment team as they assess patient needs, attitudes, and abilities.

Narrative medicine applications for patient identity and quality of life in ventricular assist device (VAD) patients.

Patients with advanced heart failure may experience a variety of challenges to their self-identity and quality of life due to their heart condition and treatment by implantation of a ventricular assist device (VAD). These challenges include loss of energy and stamina, loss of independence and autonomy, dependence on loved ones and caregivers for help, strained relationships with family and friends, and uncertainty about treatment outcomes and time of recovery. Narrative Medicine (NM) sessions may help patients to reflect on their situation, rediscover identity, and engage sources of meaning by telling or writing their story. This narrative process may encourage patient resilience and quality of life. The impact of illness and treatment on each patient may be understood more fully in light of each patient's unique identity and life story. Insights from NM visits may also help the treatment team as they assess patients' life situation including sources of support as well as goals and motivation for treatment. This paper provides case reports to illustrate applications of NM in the care of patients with advanced heart failure who are treated with implanted VADs. The cases include use of NM to clarify an elderly patient's motivation and consent for VAD implantation to return to favorite outdoor activities; application of perspectives from NM visits to appreciate a patient's slow but gradual improvement after VAD implantation and strong motivation for recovery; and use of a NM session to help a patient begin to overcome social withdrawal and fear after traumatic post-operative experiences.