Table 3

Description of included primary studies reporting empirical research

Author, year of publication and countryStudy goalStudy design: qualitative, quantitative or mixed-methodParticipants and settingThemes and findings: moral considerations as barriers to and facilitators of ACP. perspectiveMMAT
Dempsey1 2013, UKHighlight the benefits and challenges of ACP for individuals with dementiaQualitative descriptive designGeneral practice.
Physicians, patients and family or loved ones
Ethical and legal dilemmas for implementation ACP Perspective: professionals, patients, loved ones40
Saini et al2 2016, UKExamine practices relating to EOL discussions with family members of people with advanced dementia residing in NH and to explore strategies for improving practiceEthnographic study using framework approach: thematic analysis of fieldwork notes and observations, and data from in-depth interviewsNH.
Residents, n=9; staff interviews, n=19; family members interviews, n=4
EOL discussions as an ongoing rather than a one-off task-driven conversation Perspective: family members, GPs, nursing home staff end external physicians60
De Vleminck et al3 2014, BelgiumIdentify barriers to initiate ACP and gain insight into any difference in barriers between trajectories of patients with cancer, heart failure and dementiaQualitative design, 5 focus groups, discussion analysed using the method of constant comparative analysisPrimary care.
GP, n=36
Barriers to ACP relating to the GP, patient and family and the healthcare system.
Perspective: GP
80
Booij et al6 2013, The NetherlandsExplore the role of the physician regarding talking about the EOL wishes.Qualitative study, semi structured interviewsPrimary care and elderly care physicians, n=15Reasons for the physician to discuss EOL wishes from a legal, professional and moral point of view.
Perspective: physicians
100
Beck et al8 2017, UKExamine NH managers’ knowledge, attitudes, beliefs and current practice regarding ACPCross-sectional postal survey, quantitative studyNH managers, n=116Negative connotations regarding ACP among nurses. Role NH manager to actively engage and ensure facilitation of the process. Perspective: NH managers20
Stewart et al11 2011, UKExplore views on advance care planning in nursing homesIndividual semistructured interviewsNH.
Staff, n=33; care assistants, n=29; nurses, n=18; family, n=8; friends, n=15
Benefits of, and barriers to ACP. Perspective: staff, care assistants, nurses, families and friends of residents60
Brazil et al22 2015, Northern IrelandGP’s perception of ACP for patients living with dementiaCross-sectional survey, using purposive, cluster sampling of GPs with registered dementia patients. Quantitative designGeneral practice.
GP with registered dementia patients, n=133
Communication, ACP and decision making: optimal timing, initiated by the physician, importance of relationship, acceptance prognoses and limitations of life-sustaining therapy as barriers.
Perspective: GP
80
Cheong et al33 2015, UKExplore the perspectives of patients with early cognitive impairment regarding ACPMixed-methods studyPrimary care. Patients diagnosed with early cognitive impairment, n=93Patients decline ACP because of personal values, coping behaviours and sociocultural norms.
Perspective: patients
100
Livingston et al34 2013 UKImprove EOL care for people with dementia in a nursing home by increasing documentation and implementation of advanced wishesMixed-methods study. Non-randomised study: comparing advance documentation and implementation and themes from after-death interviews, pre and postinterventionNH for people with dementia, providing care recognising Jewish traditions, beliefs and cultures.
Patient records, n=98; interviews with relatives, n=20; staff, n=58
Increase in family satisfaction with reduction in hospital deaths. Staff members more confident about EOL planning and implementation wishes.
Perspective: NH residents, family members and staff
60
Livingston et al35 2012 UKExamine barriers and facilitators to care home staff delivering improved EOL care for people with dementiaIndividual qualitative interviewsNH where staff and residents’ ethnicity differed.
Staff members, n=58
Barriers such as concern to upset, being blamed, inability to communicate
Perspective: NH staf
60
Robinson et al36 2013, UKExplore professionals’ experiences on implementation of advance care planning in dementia and palliative careQualitative study, focus groups and individual interviewsPalliative care, primary care and dementia care services.
Professionals: physicians, nurses, volunteers and legal professionals, n=95
Uncertainty about the value and usefulness of ACP, the definition, components and legal status of ACP and the practicalities of implementation. Perspective: professionals80
Dickinson et al 37 2013, UKTo investigate patients’ and family caregivers’ views on planning their future generally and ACP specificallyQualitative study using semi-structured interviewsLocal older people services
People with mild to moderate dementia, n=17; and family caregivers, n=29
Participants’ barriers to undertake ACP: knowledge and awareness, right time, informal plans, future care and lack of support. Perspective: patients and family caregivers60
Palan Lopez et al38 2017, VSExamine how decisions to transfer NH residents with advanced dementia are madeQualitative descriptive method and semistructured, open-ended interviewsNH.
Healthcare providers, n=20; nurses, n=14; physicians, n=6
ACP in the process of decision making in case of an acute event to ensure that goals of care are maintained.
Perspective: nurses and physicians
60
  • ACP, advance care planning; EOL, end of life; GP, general practitioner; MMAT, Mixed-Methods Appraisal Tool; NH, nursing home.