Giving a voice to patients at high risk of dying in the intensive care unit: a multiple source approach

Kentish-Barnes, Nancy; Poujol, Anne-Laure; Banse, Emilie; Deltour, Victoire; Goulenok, Cyril; Garret, Charlotte; Renault, Anne; Souppart, Virginie; Renet, Anne; Cariou, Alain; Friedman, Diane; Chalumeau-Lemoine, Ludivine; Guisset, Olivier; Merceron, Sybille; Monsel, Antoine; Lesieur, Olivier; Pochard, Frédéric; Azoulay, Élie

doi:10.1007/s00134-023-07112-w

Cited by 4 publications

(2 citation statements)

References 43 publications

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“…Patients in the poor-to-uncertain QODD class received inadequate symptom management and suffered from frightening and distressing LSTs, which may have led bereaved surrogates to perceive the patient’s dying and death as peaceless, undignified, and traumatizing. Furthermore, these bereaved surrogates reported uncertainty about their loved one’s emotional preparedness for death, including whether the patient cleared up bad feelings, or worried about imposing strains on family, which may have further traumatized their bereavement because these issues are considered important by patients and families for a good death ( 37 , 49 ). Bereaved surrogates who doubted whether their loved one completed those important tasks might feel the opportunity to resolve unfinished business has literally passed ( 50 ), leading to a traumatized loss experience and higher reports of PTSD symptoms.…”

Section: Discussionmentioning

confidence: 99%

“…Objective indicators extracted from the medical record encompassed, for example, prognostic communication, offer of psychosocial support, and LSTs received while subjective assessments covered family perspectives of care (e.g., concern and caring from ICU staff, skill and competence of ICU nurses/physicians, amount of healthcare provided, and ICU/waiting room atmosphere), and the decision-making process (e.g., quality of information, support, and involvement during decision making). However, neither these care-quality measures nor those from other studies ( 10 , 14 – 17 , 19 – 21 ) reflect the full array of EOL-care factors important to dying patients and their families ( 37 ). The QODD domains (see Measures below) in the current study offer new insight into a wide range of clinically modifiable factors that predict for long-term, comprehensive bereavement outcomes.…”

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confidence: 99%

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Associations Between Family-Assessed Quality-of-Dying-and-Death Latent Classes and Bereavement Outcomes for Family Surrogates of ICU Decedents

Wen,

Prigerson,

et al. 2024

Critical Care Medicine

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Objectives: To examine associations between family surrogates’ bereavement outcomes and four previously determined quality of dying and death (QODD) latent classes (high, moderate, poor-to-uncertain, and worst). Design: Prospective, longitudinal, observational study. Setting: Medical ICUs at two academically affiliated medical centers in Taiwan. Patients/Participants: Three hundred nine family surrogates responsible for decision-making for critically ill patients at high risk of death (Acute Physiology and Chronic Health Evaluation II scores > 20) from a disease. Interventions: None. Measurements and Main Results: Participants were assessed by the depression and anxiety subscales of the Hospital Anxiety and Depression Scale, the Impact of Event Scale-Revised, 11 items of the Prolonged Grief Disorder (PGD) scale, and the Medical Outcomes Study 36-Item Short-Form Health Survey at 1, 3, 6, 13, 18, and 24 months post-loss. We simultaneously examined associations of four QODD latent classes with physical and mental health-related quality of life (HRQOL) and symptoms of anxiety, depression, post-traumatic stress disorder (PTSD), and PGD assessed over 24 bereavement months using multivariate hierarchical linear modeling. Surrogates’ distinct QODD latent classes assessed at 1-month post-loss were significantly associated with bereavement outcomes, except for physical HRQOL and PGD symptoms. Significantly more depressive symptoms and worse mental HRQOL (β [95% CI]) were reported by bereaved surrogates in the moderate (1.958 [1.144–2.772], –2.245 [–3.961 to –0.529]), poor-to-uncertain (2.224 [1.438–3.010], –7.026 [–8.683 to –5.369]), and worst (2.081 [1.215–2.964], –4.268 [–6.096 to –2.440]) QODD classes than those in the high QODD class. Bereaved surrogates in the moderate (2.095 [1.392–2.798]) and poor-to-uncertain (0.801 [0.123–1.480]) QODD classes reported more anxiety symptoms, whereas those in the poor-to-uncertain QODD class suffered more PTSD symptoms (2.889 [1.005–4.774]) than those in the high QODD class. Conclusions: The four distinct QODD latent classes were significantly associated with ICU family surrogates’ bereavement outcomes, suggesting targets to improve end-of-life care quality in ICUs.

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Section: Discussionmentioning

confidence: 99%

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confidence: 99%

Associations Between Family-Assessed Quality-of-Dying-and-Death Latent Classes and Bereavement Outcomes for Family Surrogates of ICU Decedents

Wen,

Prigerson,

et al. 2024

Critical Care Medicine

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End-of-life Care in the Intensive Care Unit and Ethics of Withholding/Withdrawal of Life-sustaining Treatments

Cortegiani,

Ippolito,

Mercadante

2024

Anesthesiology Clinics

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Electronic symptom monitoring for home-based palliative care: A systematic review

Mao,

Liu,

Miao

et al. 2024

Palliat Med

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Background: Coordination and communication challenges in home-based palliative care complicate transitions from hospital care. Electronic symptom monitoring enables real-time data collection, enhancing patient-provider communication. However, a systematic evaluation of its effectiveness in home-based palliative care is lacking. Aim: To analyze the feasibility, effectiveness, and limitations of electronic symptom monitoring in home-based palliative care, assess the evidence quality, identify the evidence gap, and suggest implications for future research and practice. Design: This study uses systematic review, meta-analysis, and narrative synthesis (CRD42023457977) to analyze relevant studies until September 2023. Data sources: Electronic searches in MEDLINE, CENTRAL, and Embase until September 2023, complemented by hand-searching of references and citations. Results: This study included twenty studies. The majority of patients positively engage in electronic symptom monitoring, which could improve their quality of life, physical and emotional well-being, and symptom scores without a significant increase in costs. However, firm conclusions about the effects of electronic symptom monitoring on outcomes like survival, hospital admissions, length of stay, emergency visits, and adverse events were limited due to significant variability in the reported data or inadequate statistical power. Conclusion: Introducing electronic symptom monitoring in home-based palliative care holds potential for enhancing patient-reported outcomes, potentially decreasing hospital visits and costs. However, inconsistency in current studies arising from diverse monitoring systems obstructs comparability. To advance, future high-quality research should employ standardized follow-up periods and established scales to better grasp the benefits of electronic symptom monitoring in home-based palliative care.

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Giving a voice to patients at high risk of dying in the intensive care unit: a multiple source approach

Cited by 4 publications

References 43 publications

Associations Between Family-Assessed Quality-of-Dying-and-Death Latent Classes and Bereavement Outcomes for Family Surrogates of ICU Decedents

Associations Between Family-Assessed Quality-of-Dying-and-Death Latent Classes and Bereavement Outcomes for Family Surrogates of ICU Decedents

End-of-life Care in the Intensive Care Unit and Ethics of Withholding/Withdrawal of Life-sustaining Treatments

Electronic symptom monitoring for home-based palliative care: A systematic review

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