End-of-life care in the intensive care unit: A patient-based questionnaire of intensive care unit staff perception and relatives’ psychological response

Abstract

Background: Communication is a hallmark of end-of-life care in the intensive care unit. It may influence the impact of end-of-life care on patients’ relatives. We aimed to assess end-of-life care and communication from the perspective of intensive care unit staff and relate it to relatives’ psychological symptoms. Design: Prospective observational study based on consecutive patients with severe sepsis receiving end-of-life care; trial registration NCT01247792. Setting/participants: Four interdisciplinary intensive care units of a German University hospital. Responsible health personnel (attendings, residents and nurses) were questioned on the day of the first end-of-life decision (to withdraw or withhold life-supporting therapies) and after patients had died or were discharged. Relatives were interviewed by phone after 90 days. Results: Overall, 145 patients, 610 caregiver responses (92% response) and 84 relative interviews (70% response) were analysed. Most (86%) end-of-life decisions were initiated by attendings and only 2% by nurses; 41% of nurses did not know enough about end-of-life decisions to communicate with relatives. Discomfort with end-of-life decisions was low. Relatives reported high satisfaction with decision-making and care, 87% thought their degree of involvement had been just right. However, 51%, 48% or 33% of relatives had symptoms of post-traumatic stress disorder, anxiety or depression, respectively. Predictors for depression and post-traumatic stress disorder were patient age and relatives’ gender. Relatives’ satisfaction with medical care and communication predicted less anxiety ( p = 0.025). Conclusion: Communication should be improved within the intensive care unit caregiver team to strengthen the involvement of nurses in end-of-life care. Improved communication between caregivers and the family might lessen relatives’ long-term anxiety.

Guidelines for Family-Centered Care in the Neonatal, Pediatric, and Adult ICU

“…2CFurther research is needed to identify the most effective and cost-effective ways to implement routine family conferences in the ICU setting. Numerous observational studies have suggested the need for improved communication with family members (137,(162)(163)(164)(165)(166)(167). One multicenter observational study analyzed recordings of 51 family conferences and published results in a series of articles (151)(152)(153).…”

“…Ample evidence exists describing the importance that patients and families place on high-quality communication in the ICU (26,27,170,171). Furthermore, additional evidence demonstrates that poor communication can cause patient and family dissatisfaction (162)(163)(164)(165) and even harm in the form of anxiety, depression, symptoms of PTSD and complicated grief (137,166,167,172). Given the importance of high-quality staff-family communication to familycentered outcomes, many investigators have examined communication training programs as an intervention to improve the quality of communication in the ICU setting.…”

“…Intuitively, patients and families would benefit from clinicians who are well-trained in family-centered communication. It has been established that the risks and burdens of poor communication include patient and family dissatisfaction, anxiety, depression, PTSD and complicated grief (137,(162)(163)(164)(165)(166)(167)172). Communication training for ICU clinicians is seemingly a low risk intervention.…”

Quality of life, psychological burden, needs, and satisfaction during specialized inpatient palliative care in family caregivers of advanced cancer patients

“…Studies on experiences of FCs of palliative patients in hospitals provide useful information about the range of potential psychosocial problems and needs. For example, in intensive care units, a substantial proportion of FCs showed symptoms of post-traumatic stress disorder (51%), anxiety (48%) or depression (33%) [29]. A study comparing FCs’ burden and quality of life in active treatment settings and hospice care reported the hospice group to have significantly lower values in the observed emotional and mental domains [30].…”

Estudo transversal exploratório de possíveis fatores que afetam a comunicação com familiares de pacientes idosos em cuidados paliativos

“…Na prática, é frequentemente observada a deficiência na comunicação com familiares dos pacientes criticamente doentes, o que se associa à maior angústia da família (HARTOG et al, 2015). A comunicação entre os médicos e familiares também é usualmente rápida, fragmentada e com grandes riscos de falhas, por faltarem oportunidades para fornecimento de respostas empáticas às emoções da família, que carecem de tempo suficiente para expressar seus objetivos e preocupações (PESSINI e BERTACHINI, 2005), principalmente num contexto de pronto-atendimento, em que as intervenções de saúde exigem maior agilidade e resolutividade imediatas.…”