Understanding the Course of Critical Illness Through a Lifeworld Approach

An increasing number of individuals receive and survive intensive care treatment; however, several individuals experience problems afterward, which may threaten recovery. Grounded in a lifeworld approach, the aim of this study was to explore and describe what intensive care patients experience as limiting and strengthening throughout their illness trajectories. Ten former intensive care patients were interviewed three to eight months after hospital discharge. Using Giorgi’s phenomenological analysis, a general structure of gaining strength through a caring interaction with others was revealed. The structure consisted of three constituents: feeling safe through a caring presence, being seen and met as a unique person, and being supported to restore capacity. Being met with a humanistic approach and individualized care appeared to be important, and the findings are discussed within the framework of lifeworld-led care. To facilitate improved aftercare of the critically ill, more tailored support throughout the illness trajectory is needed.

Post-COVID-19 illness trajectory: a multisystem investigation.

Background: The pathophysiology and trajectory of multiorgan involvement in post-COVID-19 syndrome is uncertain. Methods: A prospective, multicenter, longitudinal, cohort study involving post-COVID-19 patients enrolled in-hospital or early post-discharge (visit 1) and re-evaluated 28-60 days post-discharge (visit 2). Multisystem investigations included chest computed tomography with pulmonary and coronary angiography, cardiovascular and renal magnetic resonance imaging, digital electrocardiography, and multisystem biomarkers. The primary outcome was the adjudicated likelihood of myocarditis.Results: 161 patients (mean age 55 years, 43% female) and 27 controls with similar age, sex, ethnicity, and vascular risk factors were enrolled from 22 May 2020 to 2 July 2021 and had a primary outcome evaluation. Compared to controls, at 28-60 days post-discharge, patients with COVID-19 had persisting evidence of cardio-renal involvement, systemic inflammation, and hemostasis pathway activation. Myocarditis was adjudicated as being not likely (n=17; 10%), unlikely (n=56; 35%), probable (n=67; 42%) or very likely (n=21; 13%). Acute kidney injury (odds ratio, 95% confidence interval: 3.40 (1.13, 11.84); p=0.038) and low hemoglobin A1c (0.26 (0.07, 0.87); p=0.035) were multivariable associates of adjudicated myocarditis. During convalescence, compared to controls, COVID-19 was associated with worse health-related quality of life (EQ5D-5L) (p<0.001), illness perception (p<0.001), anxiety and depression (p<0.001), physical activity (p<0.001) and predicted maximal oxygen utilization (ml/kg/min) (p<0.001). These measures were associated with adjudicated myocarditis.Conclusions: The illness trajectory of COVID-19 includes persisting cardio-renal inflammation, lung damage and hemostasis activation. Adjudicated myocarditis occurred in one in eight hospitalized patients and was associated with impairments in health status, physical and psychological wellbeing during community convalescence. Public registration: ClinicalTrials.gov identifier is NCT04403607.

NCOG-43. RELATIONSHIPS BETWEEN MOOD DISTURBANCE, SYMPTOM INTERFERENCE, AND DISEASE PROGRESSION IN GLIOMA PATIENTS

Cross-sectional studies indicate that patients with gliomas report significant depressive/anxiety symptoms and symptom-related interference with daily activities at diagnosis and throughout the illness trajectory. Our study aimed to explore relationships between these mood disturbances and symptom interference with respect to progressive disease (PD) in glioma patients. Demographic, clinical characteristics, MDASI-Brain Tumor (interference items), and PROMIS Anxiety and Depression Short-Forms were collected at the time of imaging surveillance, before discussing imaging results. Comparisons between patients with/without PD and respective change scores were calculated at study entry and at subsequent assessments. Independent t-tests, Chi-square tests, and paired sample t-tests were used to report results. The sample included 438 glioma patients (62% male, 84% Caucasian, 82% high-grade) with median age of 51 years (range 18-82); 42% had PD with 60% reporting past recurrence(s); 45% had poor Karnofsky Performance Status (KPS); and median time from diagnosis was 2 years (range: 0-30). On average, patients with PD on imaging at time of assessment reported significantly greater anxiety (p = 0.008), depression (p &lt; 0.001), and symptom interference (p &lt; 0.001) than those with stable disease. Additionally, more patients with PD reported moderate-severe anxiety (25%) and depression (22%) than patients with stable disease (15% and 12%, respectively). When evaluating change scores, patients with PD reported worse symptom interference (p &lt; 0.001) but stable mood disturbance, while patients with stable disease reported improved depression (p = 0.018) and unchanged anxiety symptoms compared to baseline. Although mood disturbance is higher for patients with PD, some of these patients do not experience worsening, but rather a continuation of ongoing psychological symptoms, which may portend a worse illness trajectory. Identifying these patients early in this trajectory to evaluate potential biologic correlates between mood and prognosis is warranted to validate these findings.

Illness trajectory of metastatic breast cancer: A qualitative narrative study

Purpose: Breast cancer is accompanied with different psychological consequences. This study investigate to describe the physical, emotional, social, and spiritual characteristics of illness trajectory of metastatic breast cancer (MBC).Method: This is a qualitative study, in which repeated in-depth interviews with 15 MBC patients were conducted. The interview data were transcribed verbatim and analysed as a text, using a qualitative biographic narrative approach.Results: Patient’s narratives about the illness trajectories revealed various physical, cognitive, emotional, social, and spiritual needs at the time of breast cancer diagnosis, and the incidence of metastasis. Positive experiences including personal growth, and negative feelings such as rejection and isolation were reported as patient’s narratives about living with MBC. At the anticipatory phase, the Patient’s narratives were classified into pessimistic and optimistic predictions which were affected by spiritual attitude. Similarly, spiritual as well as religious beliefs were highlighted in psychological reactions and patient’s point of view about death.Conclusions: The MBC trajectory is complicated and each phase of the MBC trajectory includes characteristic tasks and focal points. To move away from the predominant traditional approach towards a more comprehensive and better-targeted service, an increased understanding of the complexities of the MBC trajectory is necessary.

What's in the Syringe?

What’s in the Syringe? Principles of Early Integrated Palliative Care, a guide for clinicians, teaches the psychological skills of outpatient palliative care. It does so based on a framework that articulates five challenges faced by patients through the illness trajectory. Each challenge forms the focus of a chapter. By helping patients meet each challenge, clinicians help them cope with serious illness. Patients thereby experience better quality of life and develop prognostic awareness. From this awareness, they can make informed medical and personal decisions. Each chapter focuses on clinical skills to support patients as they take up that challenge. Each chapter then ends with a discussion of how to collaborate with oncology colleagues around that challenge. Rich in illustrative examples and built around case-based chapters, the book draws on two decades of research and clinical experience.

Pairing Hopes and Worries

This chapter describes the second challenge of serious illness, pairing hopes and worries. It discusses how clinicians help patients acknowledge worries and explains how, by pairing hopes and worries, patients can step outside of their moment-to-moment feelings enough to gain a broader perspective. This slight distance helps patients to see themselves with clarity and empathy. The chapter describes communication skills for helping patients pair hopes and worries and introduces clinical attunement, a specialist concept that includes aspects of attunement specific to palliative care: being aware of how the patient is coping and of the mostly likely illness trajectory. The chapter ends with skills for talking with oncology colleagues about how patients are learning to pair hopes and worries and to develop prognostic awareness.

Care of children with advanced illness

Based on the holistic, family-centred approach of paediatric palliative care, this chapter examines specific aspects of the clinician, parent, and child roles in the care and treatment of children and young persons with life-limiting conditions and life-threatening illnesses. In particular, it identifies communication, information, decision-making, and participation preferences of children and young persons with advanced illness and their parents. Within the clinician–parent–child triad, the chapter sets forward suggestions for clinicians on how to manage differences between a child and his or her parents, and more generally, on how to approach the communication and decision-making processes throughout a child’s or young person’s illness trajectory.

Deepening Prognostic Awareness

This chapter describes the fourth challenge of serious illness, deepening prognostic awareness. It discusses how to hold conversations about the meaning of the prognosis. These conversations range beyond, and need not include, explicit prognostic disclosures. To engage in them, patients need distress tolerance: the capacity to experience oneself and the current situation without trying to change the situation. Then, through these conversations, patients develop and refine their inchoate worries and reprioritize their values. The chapter discusses, first, how to approach patients who can talk about the future (who more easily pair hopes and worries). It then explores the clinical dilemma of patients who hesitate to talk about the future. It discusses how to invite these patients into difficult conversations based on the clinician’s attunement to how the patient is coping and the illness trajectory. The chapter ends by discussing of how the collaboration between palliative care and oncology clinicians is affected by the patient’s deepening prognostic awareness.

Delirium

Delirium is the most common and serious neuropsychiatric disorder experienced by people with advanced illness. It leads to significant morbidity, and significant distress for the person themselves, family members and staff. Delirium often bodes of a poor prognosis and can significantly interfere with pain and symptom control. Unfortunately, delirium is often under-recognized or misdiagnosed in the palliative care patient, and even when recognized, it frequently goes untreated or is inappropriately treated. Clinicians who care for patients with advanced illness must be able to diagnose delirium accurately; undertake appropriate assessment of aetiologies and consider their treatment with due consideration of treatment goals and illness trajectory; and individualize the pharmacological and non-pharmacological interventions to support delirium recovery, maximize patient safety, and reduce distress from symptoms.