Advance Care Planning Shared Decision-Making Tools for Non-Cancer Chronic Serious Illness: A Mixed Method Systematic Review

Sloan, Danetta H.; Hannum, Susan M.; DeGroot, Lyndsay; Dy, Sydney M.; Waldfogel, Julie M.; Chyr, Linda; Heughan, Jaalah Ai; Zhang, Allen; Wilson, Renée F; Yuan, Christina T.; Wu, David; Robinson, Karen A.; Cotter, Valerie T.

doi:10.1177/1049909121995416

Cited by 6 publications

(5 citation statements)

References 28 publications

(72 reference statements)

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“…Twenty-five reviews examined interventions that were designed to improve the delivery of patient-centred end-of-life care. 66,69,100 –122 A brief overview of the types of interventions that were identified, alongside a summary of their reported impacts, has been provided in Table 5. A more detailed description of the interventions and outcomes examined by each study has been provided in Supplemental File 2.…”

Section: Resultsmentioning

confidence: 99%

A rapid umbrella review of the literature surrounding the provision of patient-centred end-of-life care

et al. 2023

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Background: Patients have reported a broad range of unmet needs in their receipt of clinical care at the end of life. Therefore, enhancing the quality of end-of-life care through patient-centred healthcare interactions is warranted. Aim: The aim of this rapid umbrella review was to synthesise previous literature reviews that have examined: (1) patient preferences for patient-centred end-of-life care; (2) barriers and enablers to patient-centred end-of-life care; (3) interventions designed to enhance patient-centred end-of-life care; and (4) patient-centred models of end-of-life care. Design: A rapid umbrella review was conducted and informed by the Joanna Briggs Institute’s methodological guidance for conducting umbrella reviews. Data sources: Three academic databases were searched for relevant literature in May 2022: MEDLINE, PsycINFO and CINAHL Plus. Inclusion criteria encompassed literature reviews that examined the topic of patient-centred care for any adult patients in end-of-life care. Results: A total of 92 literature reviews were identified. Findings suggest that there is often a discrepancy between patient preferences and the provision of care. These discrepancies have been associated with a range of barriers at the patient, staff and system levels. Common interventions included education and training for staff which were often met with improved patient outcomes. Patient-centred models of care were underrepresented across the literature. Conclusions: This review highlighted a need for healthcare systems to support staff in providing a patient-centred end of life experience through the development of a co-designed patient-centred model of care, supplemented by professional development and a systematic approach to identifying and documenting patient preferences.

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Section: Resultsmentioning

confidence: 99%

A rapid umbrella review of the literature surrounding the provision of patient-centred end-of-life care

et al. 2023

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“…Patients may not consider future treatment, be reluctant to make binding decisions regarding future care [ 81 ], or feel that such discussions are pointless as the future seems beyond their control due to their disease [ 75 ]. The timing of such discussions needs to be tailored, but they should be carried out early in the disease trajectory when patients are in a stable phase of the disease by a physician who has a trusting relationship with them [ 82 ]. However, HCPs may be reluctant to discuss PC and future treatment since they mainly focus on curative treatments or may be concerned about destroying patients’ hope [ 2 , 9 ].…”

Section: Discussionmentioning

confidence: 99%

Non-invasive ventilation in the care of patients with chronic obstructive pulmonary disease with palliative care needs: a scoping review

Steindal,

Hofsø,

Aagaard

et al. 2024

BMC Palliat Care

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Background Patients with severe chronic obstructive pulmonary disease (COPD) could have palliative care (PC) needs because of unmet needs such as dyspnoea. This may lead to anxiety and may have an impact on patients’ ability to perform daily activities of living. PC can be started when patients with COPD have unmet needs and can be provided alongside disease-modifying therapies. Non-invasive ventilation (NIV) could be an important measure to manage dyspnoea in patients with COPD in need of PC. A scoping review was conducted to gain an overview of the existing research and to identify knowledge gaps. The aim of this scoping review was to systematically map published studies on the use of NIV in patients with COPD with PC needs, including the perspectives and experiences of patients, families, and healthcare professionals (HCPs). Methods This review was conducted following the framework of Arksey and O’Malley. The reporting of the review was guided by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews checklist. The review protocol was published. AMED, CINAHL, Embase, MEDLINE, PEDro, and PsycInfo were searched from inception to November 14, 2022. The included studies had to report the perspectives and experiences of COPD patients, relatives, and HCPs regarding NIV in the care of patients with COPD with PC needs. In pairs, the authors independently assessed studies’ eligibility and extracted data. The data were organised thematically. The results were discussed in a consultation exercise. Results This review included 33 papers from 32 studies. Four thematic groupings were identified: preferences and attitudes towards the use of NIV; patient participation in the decision-making process of NIV treatment; conflicting results on the perceived benefits and burdens of treatment; and heterogenous clinical outcomes in experimental studies. Patients perceived NIV as a ‘life buoy’ to keep them alive. Many patients wanted to take part in the decision-making process regarding NIV treatment but expressed varying degrees of inclusion by HCPs in such decision-making. Conflicting findings were identified regarding the perceived benefits and burdens of NIV treatment. Diversity in heterogeneous clinical outcomes were reported in experimental studies. Conclusions There is a need for more studies designed to investigate the effectiveness of NIV as a palliative measure for patients with COPD with PC needs using comprehensive outcomes. It is especially important to gain more knowledge on the experiences of all stakeholders in the use of home-based NIV treatment to these patients.

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“…Oncologists should consider these different contexts. Shared decision-making tools could facilitate exchanges (Sloan et al 2021;van Oosterhout et al 2021).…”

Section: Discussionmentioning

confidence: 99%

The place of the relative at the time of the announcement of cancer progression: BABEL – a mixed-methods study

et al. 2023

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Objectives This study aims to explore the place of the relative in these triadic consultations and how this influences communication. Methods A mixed-methods research strategy was used. Triadic consultations for the announcement of cancer progression were recorded and following the 3 participants completed questionnaires comprising mirror-items. Recordings and answers were further investigated in a few semi-structured interviews. Comparison of quantitative responses (questionnaires) used Wilcoxon’s test for matched series. Qualitative analyses (consultations, interviews) used grounded theory. Patients were over 18, followed for cancer in palliative phase, excluding brain tumors and malignant hemopathies, and presented renewed disease progression. Relatives were over 18 and authorized by the patient to participate. Results 47 consultations (audio-recordings, answers to questionnaires) and 12 interviews conducted separately with 4 triads were collected. Half the relatives, while remaining in the background, nevertheless contributed to the discussion. For patients, the presence of a relative was considered beneficial and for oncologists it facilitated the announcement. However, symptoms perceived as intimate or private appeared difficult to express for some patients, and for relatives, prognosis was a difficult subject to broach. Although their relationship with time and their expectations may differ, patients and relatives found consultations positive. Oncologists appeared to underestimate the patient’s level of understanding (P<0.001) and perceptions of the seriousness of the disease (P=0.009) but not those of relatives. They did not evaluate the relative’s state of health and check what the dyad had retained. Significance of results Training via simulation sessions should be adapted to communication involving relatives.

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Advance Care Planning Shared Decision-Making Tools for Non-Cancer Chronic Serious Illness: A Mixed Method Systematic Review

Cited by 6 publications

References 28 publications

A rapid umbrella review of the literature surrounding the provision of patient-centred end-of-life care

A rapid umbrella review of the literature surrounding the provision of patient-centred end-of-life care

Non-invasive ventilation in the care of patients with chronic obstructive pulmonary disease with palliative care needs: a scoping review

The place of the relative at the time of the announcement of cancer progression: BABEL – a mixed-methods study

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