'How long do you think?' Unresponsive dying patients in a specialist palliative care service: A consecutive cohort study.

BACKGROUND: Predicting length of time to death once the person is unresponsive and deemed to be dying remains uncertain. Knowing approximately how many hours or days dying loved ones have left is crucial for families and clinicians to guide decision-making and plan end-of-life care. AIM: To determine the length of time between becoming unresponsive and death, and whether age, gender, diagnosis or location-of-care predicted length of time to death. DESIGN: Retrospective cohort study. Time from allocation of an Australia-modified Karnofsky Performance Status (AKPS) 10 to death was analysed using descriptive narrative. Interval-censored survival analysis was used to determine the duration of patient's final phase of life, taking into account variation across age, gender, diagnosis and location of death. SETTING/PARTICIPANTS: A total of 786 patients, 18 years of age or over, who received specialist palliative care: as hospice in-patients, in the community and in aged care homes, between January 1st and October 31st, 2022. RESULTS: The time to death after a change to AKPS 10 is 2 days (n = 382; mean = 2.1; median = 1). Having adjusted for age, cancer, gender, the standard deviation of AKPS for the 7-day period prior to death, the likelihood of death within 2 days is 47%, with 84% of patients dying within 4 days. CONCLUSION: This study provides valuable new knowledge to support clinicians' confidence when responding to the 'how long' question and can inform decision-making at end-of-life. Further research using the AKPS could provide greater certainty for answering 'how long' questions across the illness trajectory.

Decision-making in nursing research and practice-Application of the Cognitive Continuum Theory: A meta-aggregative systematic review.

AIM: To explore how the Cognitive Continuum Theory has been used in qualitative nursing research and to what extent it has been integrated in the research process using the Qualitative Network for Theory Use and Methodology (QUANTUM). BACKGROUND: Theory, research and nursing are intrinsically linked, as are decision-making and nursing practice. With increasing pressure on nurses to improve patient outcomes, systematic knowledge regarding decision-making is critical and urgent. DESIGN: A meta-aggregative systematic review. METHODS: DATABASES: CINAHL, Medline, PsycINFO, Embase and PubMed were searched from inception until May 2022 for peer-reviewed research published in English. Seven studies were included and assessed for methodological quality using the Joanna Briggs Institute checklist for qualitative research. A meta-aggregative synthesis was conducted using Joanna Briggs methodology. The QUANTUM typology was used to evaluate the visibility of the Cognitive Continuum Theory in the research process. RESULTS: The review identified five synthesised findings, namely: 1. the decision-making capacity of the individual nurse, 2. nurses' level of experience, 3. availability of decision support tools, 4. the availability of resources and 5. access to senior staff and peers. Only two of seven studies rigorously applied the theory. The included studies were mainly descriptive-exploratory in nature. CONCLUSION: The transferability of the Cognitive Continuum Theory was demonstrated; however, evolution or critique was absent. A gap in the provision of a patient-centric approach to decision-making was identified. Education, support and research is needed to assist decision-making. A new Person-Centred Nursing Model of the Cognitive Continuum Theory has been proposed to guide future research in clinical decision-making. RELEVANCE TO CLINICAL PRACTICE: Nurses make numerous decisions every day that directly impact patient care, therefore development and testing of new theories, modification and revision of older theories to reflect advances in knowledge and technology in contemporary health care are essential.

The conscious state of the dying patient: An integrative review.

OBJECTIVES: The cognitive state of the dying in the last days of life may deteriorate, resulting in a reduced ability to communicate their care needs. Distressing symptoms, physical and existential, may go unrecognized and untreated. The objectives of this integrative review were to systematically interrogate the literature to determine the changing conscious state of dying adults and to identify changes in their care needs. METHODS: An integrative review protocol was registered with PROSPERO (CRD42020160475). The World Health Organization definition of palliative care informed the review. CINAHL, MEDLINE (OVID), Scopus, PsycINFO, Cochrane Library, and PubMed were searched from inception to October 2019 using search strategies for each database. Inclusion and exclusion criteria were applied. Methodological quality was appraised using the Joanna Briggs Institute Checklist for the Case Series appraisal tool. Extracted data were synthesized using a narrative approach. RESULTS: Of 5,136 papers identified, 11 quantitative case series studies were included. Six themes were identified: conscious state and change over time, awareness, pain, absence of holistic care, the voiceless patient, and signs and symptoms of dying. SIGNIFICANCE OF RESULTS: In the last days of life, the physical and conscious state of the dying patient declines, resulting in an inability to express their care needs. Dignity in dying and freedom from pain and suffering are both an imperative and a human right; and unvoiced care needs can result in unnecessary suffering and distress. This review revealed that little is known about how healthcare professionals assess holistic care needs at this vulnerable time. Although much has been written about palliative and end-of-life care, the assessment of care needs when patients are no longer able to voice their own needs has largely been ignored, with little attention from clinical, educational, or research perspectives. This gap in evidence has important implications for the dying and their families.