Stakeholders’ views on identifying patients in primary care at risk of dying: a qualitative descriptive study using focus groups and interviews

Urquhart, Robin; Kotecha, Jyoti; Kendell, Cynthia; Martin, Mary; Han, Han; Lawson, Beverley; Tschupruk, Cheryl; Marshall, Emily Gard; Bennett, Carol

doi:10.3399/bjgp18x698345

Cited by 24 publications

(38 citation statements)

References 27 publications

(36 reference statements)

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“…Although this study includes only 12 participants, the findings are concordant with other studies in the literature (1,11,12). The GPs interviewed represented eleven very different practices, in 3 counties.…”

Section: Strengths and Limitationssupporting

confidence: 88%

Barriers to GPs identifying patients at the end-of-life and discussions about their care: a qualitative study

et al. 2019

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Background Identification of patients at the end-of-life is the first step in care planning and many general practices have Palliative Care Registers. There is evidence that these largely comprise patients with cancer diagnoses, but little is known about the identification process. Objective To explore the barriers that hinder GPs from identifying and registering patients on Palliative Care Registers. Methods An exploratory qualitative approach was undertaken using semi-structured interviews with GPs in South West England. GPs were asked about their experiences of identifying, registering and discussing end-of-life care with patients. Interviews were audio recorded, transcribed and analysed thematically. Results Most practices had a Palliative Care Register, which were mainly composed of patients with cancer. They reported identifying non-malignant patients at the end-of-life as challenging and were reluctant to include frail or elderly patients due to resource implications. GPs described rarely using prognostication tools to identify patients and conveyed that poor communication between secondary and primary care made prognostication difficult. GPs also detailed challenges around talking to patients about end-of-life care. Conclusions Palliative Care Registers are widely used by GPs for patients with malignant diagnoses, but seldom for other patients. The findings from our study suggest that this arises because GPs find prognosticating for patients with non-malignant disease more challenging. GPs would value better communication from secondary care, tools for prognostication and training in speaking with patients at the end-of-life enabling them to better identify non-malignant patients at the end-of-life.

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Section: Strengths and Limitationssupporting

confidence: 88%

Barriers to GPs identifying patients at the end-of-life and discussions about their care: a qualitative study

et al. 2019

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“…In a further analysis of data, we aim to address the nature and outcomes of unexpected deaths of people with intellectual disabilities in more detail. There exists evidence of improved identification of need in the general population when an anticipatory model of need for end‐of‐life care is used rather than one whose sole focus is the accurate prognostication of death (Kennedy et al, 2014; Teggi, 2018; Thoonsen et al, 2016; Urquhart et al, 2018). There is an urgent need for more research on how a need for end‐of‐life care in people with intellectual disabilities is suspected, anticipated and determined.…”

Section: Discussionmentioning

confidence: 99%

Last months of life of people with intellectual disabilities: A UK population‐based study of death and dying in intellectual disability community services

Todd

Bernal

Shearn

et al. 2020

Research Intellect Disabil

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“…This also points to the value of having ACP led by someone who is familiar with the patient and has established a rapport with them. Participants were generally in agreement that having their PCPs initiate ACP would be appropriate, but questioned the feasibility of having them take on this role given physicians' workload and time constraints-challenges that have been echoed by physicians themselves [40,53]. In a companion study by the authors [40], stakeholders (including 29 health care providers) felt that while ACP is incredibly important, physicians do not have the time to engage in the multiple, in-depth discussions required.…”

Section: Discussionmentioning

confidence: 99%

“…Participants were generally in agreement that having their PCPs initiate ACP would be appropriate, but questioned the feasibility of having them take on this role given physicians' workload and time constraints-challenges that have been echoed by physicians themselves [40,53]. In a companion study by the authors [40], stakeholders (including 29 health care providers) felt that while ACP is incredibly important, physicians do not have the time to engage in the multiple, in-depth discussions required. This issue may be related to the fact that many family physicians work in solo practices or physician-only practices without other professionals (e.g., nurses, nurse practitioners, social workers, etc.)…”

Section: Discussionmentioning

confidence: 99%

“…Our study included three separate components, or sub-studies: the development and validation of an algorithm using data captured in electronic medical records (EMRs) in PHC settings to support routine identification of individuals at risk of death in the next 12 months [39], focus groups and interviews with health professionals [40], and interviews with patients and patient caregivers (family member or friend) to learn about their perspective on the opportunities and challenges of identifying at-risk individuals and initiating ACP in PHC settings. Focus groups and interviews with relevant stakeholder groups were carried out in parallel to algorithm development and validation.…”

Section: Introductionmentioning

confidence: 99%

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Patient and caregiver perspectives on early identification for advance care planning in primary healthcare settings

et al. 2020

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Background: As part of a broader study to improve the capacity for advance care planning (ACP) in primary healthcare settings, the research team set out to develop and validate a computerized algorithm to help primary care physicians identify individuals at risk of death, and also carried out focus groups and interviews with relevant stakeholder groups. Interviews with patients and family caregivers were carried out in parallel to algorithm development and validation to examine (1) views on early identification of individuals at risk of deteriorating health or dying; (2) views on the use of a computerized algorithm for early identification; and (3) preferences and challenges for ACP. Methods: Fourteen participants were recruited from two Canadian provinces. Participants included individuals aged 65 and older with declining health and self-identified caregivers of individuals aged 65 and older with declining health. Semi-structured interviews were conducted via telephone. A qualitative descriptive analytic approach was employed, which focused on summarizing and describing the informational contents of the data. Results: Participants supported the early identification of patients at risk of deteriorating health or dying. Early identification was viewed as conducive to planning not only for death, but for the remainder of life. Participants were also supportive of the use of a computerized algorithm to assist with early identification, although limitations were recognized. While participants felt that having family physicians assume responsibility for early identification and ACP was appropriate, questions arose around feasibility, including whether family physicians have sufficient time for ACP. Preferences related to the content of and approach to ACP discussions were highly individualized. Required supports during ACP include informational and emotional supports. Conclusions: This work supports the role of primary care providers in the early identification of individuals at risk of deteriorating health or death and the process of ACP. To improve ACP capacity in primary healthcare settings, compensation systems for primary care providers should be adjusted to ensure appropriate compensation and to accommodate longer ACP appointments. Additional resources and more established links to community organizations and services will also be required to facilitate referrals to relevant community services as part of the ACP process.

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Stakeholders’ views on identifying patients in primary care at risk of dying: a qualitative descriptive study using focus groups and interviews

Cited by 24 publications

References 27 publications

Barriers to GPs identifying patients at the end-of-life and discussions about their care: a qualitative study

Barriers to GPs identifying patients at the end-of-life and discussions about their care: a qualitative study

Last months of life of people with intellectual disabilities: A UK population‐based study of death and dying in intellectual disability community services

Patient and caregiver perspectives on early identification for advance care planning in primary healthcare settings

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