Background
Recent literature overviews of ACP
Method
Literature search
Population | NH patients and their relatives. |
Intervention | Advance Care Planning defined as a conversation between patients, and/or relatives and health personnel about thoughts, expectations and preferences for end-of-life-care. |
Comparison | All studies using standard care group comparison, before/after comparison, as well as studies without standard means of comparisons were included. |
Outcome | All outcomes both qualitative and quantitative were included. |
Exclusion criteria | Studies only including home-dwelling and hospital patients |
Studies only including specific diagnoses (e.g., heart failure, cancer) | |
Studies only using chart based interventions where patients/relatives are left on their own (e.g., advance directives without conversations). | |
Studies that only focused on treatment limits (e.g., DNR, DNH). Publications such as case studies, chronicles, guidelines, protocols, unsystematic reviews and legal documents were excluded. | |
Publications in in other languages than English and Scandinavian. | |
Publications without abstracts. |
Author | Population | Intervention-tool/education/aim of the study? | Comparison Methods Outcome measures | Outcome/themes/results | Promoters | Barriers |
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Livingston G, 2013 London, UK | Patients w/dementia who died before (N = 98), during (N = 56) or after (N = 42) the intervention mean MMSE = 5 | Tool - GSFCH - Chart for choices Education - Learning course - 10-session manualized, interactive staff-training program Practical training - Facilitators | - Non-randomized intervention study, 2-year follow-up - Mixed methods - Interviews w/relatives - Review of med. records - QoL-AD, GHQ, DNR, ACP, days in hospital | - Better palliative approach - Fewer deaths in hospitals (from 76 to 47 %) - Better documentation of DNR orders (from 14 to 73 %) & ACP discussions (from 39 to 65 %) - No difference for days spent in hospital - More satisfied relatives - Staff more comfortable with addressing ACP-issues | - Staff training to increase awareness & knowledge & reduce fear - Motivated NH management - Trained in Gold Standard Framework - Low staff turn over | - Different dementia policy actions at the same time-change findings - Different cultures? Laws (e.g., Jewish tradition NH) - Adaption addressing different cultures in NHs necessary |
Silvester W, 2013 Victoria area, Australia | 19 Residential Aged Care Facilities (RACF) 203 Patients’ records Cognitive function not specified | Tool Making Health Choices | - Non-randomized controlled trial - Quantitative methods - Analysis of patient records, documented ACP pre/post-intervention timeframe not specified | - Better documentation of EOLC preferences & ACP discussions - 49 % MEPOA - >90 % value/beliefs - 78 % health perspectives | - Standards guiding ACP content & documentation - Ex. of values/belief statements in care plans - 17 principles of ACP (e.g., policies, education, information, routines, best interest, Inevitability of death, options, GP, EOLC, documentation confidentiality) | - Inconsistencies in naming & layout of ACP documentation |
Hockley J, 2010, Scotland, UK | 7 NHs 133 patients assessed as in need of ACP, who died during intervention, 95 controls (patients who died a year prior to intervention) 66 % were diagnosed with dementia | Tool - GSFCH - LCP Education - Learning course - Practical training - Workshops - Train the trainer - Facilitators - Support from researchers | - Intervention study, 18-months. follow-up - Mixed methods - Chart review - Survey of health care personnel - Qualitative interview of bereaved relatives (results not reported) | - Better palliative approach - Fewer hospital deaths - Staff comfortable with addressing ACP-issues | - Good consistent leadership - Regular visits from the same GP - More comprehensive palliative care approach | - Problems with staff turnover, retention & recruitment |
Chan HY, 2010 Hong Kong | Competent NH patients: - 59 intervention - 62 control | Tool - Let me Talk Education - Semi-structured interview guide | - Non-randomized controlled feasibility study, 12-months. follow-up - Quantitative methods - Questionnaire based survey | - Only 3 families included - Stability of treatment preference - More preference stated - Relieved existential anxiety/distress | - Time consuming - Unclear effect in incompetent people/with dementia & older people | |
Morrison RS, 2005 NY City, USA, | - 4 Social workers (2 control/intervention) - 139 LTC residents: 96 control 43 intervention | Tool - Structured ACP discussion with patient & relatives at admission, 1 year & changes in clinical status Education - Counselling of NH social workers - Education/training: Terms/definitions, role-play, supervision - Practical training - Workshops | - Controlled clinical trial, 6-months. follow-up - Mixed methods - Minimum data set at admission - Interview of Social workers - Review of medical records | - Better documentation of EOLC preferences & ACP discussions - Better concordance between patient wishes & provided treatment | - High focus on decision capacity & proxy relative - Simple intervention of forms, team meetings, feedback to clinicians by social workers improves likelihood of residents preferences being elicited | - Few social workers - Lack of documentation - Short follow up - Legislation restricting surrogate decision making on behalf persons with reduced decision capacity |
Author | Population | Intervention-tool/education/aim of the study? | Comparison Methods Outcome measures | Outcome/themes/results | Promoters | Barriers |
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Hickman SE, 2011 Oregon, Wisconsin & West Virginia, USA | - 90 NHs - 870 Living & deceased residents with a valid POLST | Tool: POLST | - Cross-sectional observational study - Quantitative methods - Retrospective chart review | - Treatment for patients with a completed POLST mostly consistent with stated wishes: - Over 90 % adherence in terms of resuscitation, hospitalization & antibiotics, 63.6 % in terms of feeding tubes | Standardized medical orders that transfer with them throughout the healthcare system | |
Sankaran S, 2010 Aukland, New Zealand | - NH & hospital nurses - Mental status not provided | - Multi-component support w/5main components: medication review, tel. hotline, advance nursing support POAC/Chronic Care Management programme & ACP Education - Learning course - Weekly in-house education - Practical training - Facilitators | Intervention study 6-months. follow-up - Mixed method - Observation & analyses of field notes. - Semi-structured interviews with staff pre/post intervention - Recording of medication changes, use of emergency calls & transmission to hospital | - No ACP were completed - All nurses but no physicians participated in the ACP-training - ACP programme continued - Education programme stopped | - Hotline - Education | - Unclear legal issues - Illnesses in the residents - Absent physicians - Staff was reluctance - Lack of time - Management thought residents’ cognitive state was too poor - The residents were insecure, as their family was not invited to the discussion. |
Caplan GA, 2006 Australia | - 1 clinical nurse consultant - 2 hospitals, & 1 control hospital - 21 NHs - 45 NH patients - MMSE ≥16 excluded | Tool - “Let Me Decide” Education - Learning course - Education of family residents & staff about dementia, ACP, alternatives to hospitalisation - Facilitators | - Non-randomised intervention study, 12-months. follow-up - Quantitative methods - Controlled retrospective & prospective registry analyses over 3 years | - Changed routines, culture, - More information to families - Fewer deaths in hospitals - Decreased emergency calls in intervention hospital -Staff more confident in addressing ACP-issues | - Clarified role of the substitute consent giver - Capacity screening for mental competence by MMSE ≥16 - Education | - Challenges relating to following groups: dementia/neurodegenerative, cardiac & respiratory end-stage disease - Reluctance to sign the ACD document |
Jeong SY, 2007 Australia | - 3 Patients - 11 Relatives - 13 Nurses - Final included N not specified | Not specified | - 7-months. observation study - Mixed method - Medical record analyses - Observation of specialist nurses & their role in the ACP process - Observation: residents, relatives & nurses - Interviews of staff, patients & relatives | Themes: - Nurses needed to clarify what ACP did & did not entail (i.e., dispelling myths such as ACP = euthanasia) - Nurses had an important role as a communicative link between physicians, family & patient | ||
Molloy DW, 2000 Ontario, USA | 1292 Competent NH patients (MMSE > 16)/relatives of non-competent patients (Intervention N = 636, control N = 656) | Tool - Let Me Decide Education - Learning course - Practical training - Workshops - Train the trainer - Facilitators | Randomized controlled trial, follow-up at 6, 12 & 18 months. Quantitative methods Questionnaires to patients or patients relatives | - 49 % of residents & 78 % of relatives completed AD in intervention - Fewer hospitalizations - Reduced hospital costs | - Allocating personnel to ensure implementation | - The form was too comprehensive; deterred residents from completing it |
Markson 1994 | 48 Competent NH patients 356 Home care patients 10 NH or home care Physicians | 90 % of NH patients completed form |
Author | Population | Aim of the study? | Comparison Methods Outcome measures | Outcome/themes/results | Promoters | Barriers |
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Burgess M, 2011, USA | - 9 NHs - 31 physicians - 12 nurse practitioners/physician assistants | - Identify important barriers & promoters for ACP among NH staff | - Quantitative methods - Survey | - ACP documentation habits, i.e., location & who is responsible for documenting, perceived barriers & promoters - Experiences with different ACP elements | - Standardized form - Standardized location for documentation - Training/education of staff | - Patients’ impaired cognition - Lack of time during visit - Lack of family involvement |
Stewart F, 2011 London, UK | - 34 NHs - 33 NH managers - 18 NH nurses - 10 Nurses & 29 care assistants from community - 15 Primary contact, family/friends - 14 Residents | - Qualitative Study - Semi-structured interviews about end-of-life care with staff & family members | Themes: - Benefits: choice, better planning, respect for patients wishes, aiding treatment decisions - Staff reported to have some form of ACP in place - Only 1 resident shared preferences, therefore interviews not included - Family & staff have different views about residents best interests | - Staff & family positive towards ACP; prepare for better planning - Early initiation; often too late in a NH - Family involvement - Familiarity between staff, resident & family - Staff training - ACP providing guidance to staff how to approach discussion | - Reluctant patients - Reluctant personnel, - Reluctant family involvement - Dementia - Unforeseen medical circumstances - Staffs diff. cultural beliefs, ethnic backgrounds - Family insists on hospital transfer - GPs not included-should be more engaged. | |
Froggatt K, 2009 UK | - 213 care home managers - 15 care home managers interviews | To describe current ACP practice in UK | Mixed method design in two cross-sectional phases - Questionnaire-based survey of 213 managers - Telephone based in-depth interviews | - 1/3 of the NHs had completed ACP in fewer than 25 % of the patients - 1/5 of the NHs had ACP completion in 75 % or more of the patients - 5 themes: consultation w/resident, consultation w/relative, discussing future decision making, training, manager perspective on ACP | - UK is engaged in strategy & policy initiatives for coordination of ACP - ACP Initiatives must consider implementation in which the whole system has to be considered | - Resident’s unwillingness & level of functioning, - Family unwillingness/availability/dynamic, - Staff confidence/knowledge/time/discomfort - NH resources - Extrinsic factors, i.e., GPs, district nurse & hospitals - Unclear responsibility |
Shanley C, 2009 South Western Sydney, Australia | 41 Care facility managers | To gain an understanding of how ACP is understood & approached by care facilities managers | Qualitative Study Interviews with managers Themes discussed: Initiation; Scope; Follow-up; Documentation; Organisational leadership; “In a nutshell” (individual initiative) | - Facilities without a systematic ACP approach tend to discuss EoLC late in illness - Little coherence between wishes & treatment plan - Common practice to incorporate ACP in the general care process - Conflicting ideas of ideal timing to initialize ACP | - Involve all stakeholders, - Systematic approach (i.e., guidelines, policies, protocols, checklists) - Clarified responsibility & documentation - Early initiation of ACP | - Patient & family unwillingness - Physicians’ reluctance - Legal uncertainties - Lack of training - No ACP system |
Pauls MA, 2001 Toronto, Canada | 7 nurses from Emergency Department (ED), 7 ED physicians 10 Paramedics 7 Long term care (LTC) nurses 4 LTC physicians | - Describe an ideal model for the transfer of an directive from LTC facilities to EDs - Understand the complex process in a transfer form | Qualitative study - 6 Focus group interviews with 35 participants | Theme –synthesis of the “ideal” ACP model: - Form: max 2 pp, simple language, specified options & room for alternative responses, physician’s signature - Completing the form: Education for staff, patient & family, starting early, process rather than a decision focus, yearly review, - Using the form: before acute illness, accessible, implement on regional basis, endorsed by authorities, improve staff education/communication | - Simplicity & acceptability - Physicians signature - Substitute decision maker - Education & repeated, simple info to patients & relatives - Process rather than a decision focus - Info in form of books, video, discussions - Cultural sensitivity | - In crises, physicians may not follow ADs/wishes - Minorities less likely to complete; mistrust - Unknown patients - Lack of time - Exclusion of physicians - Lack of external validity - Time consuming |
Results
What was the content of the ACP interventions?
Physician Orders for Life Sustaining Treatment (POLST), Hickman [28] | The POLST is collected through conversations between patients, relatives, and health personnel about preferences for EoLC. It is form-based and designed to function as a directive for treatment, covering issues like A-C: CPR, medical intervention, antibiotics and nutrition in case of any changes in a patient’s condition. |
The GSFCH is a quality improvement program with education modules that focus on ACP. The framework also aims to formalize the ACP using a form that includes open-ended questions about preferences for care and aims to determine whether a Lasting Power of Attorney is mentioned. | |
Let me talk, Chan & Pang [10] | Let me talk is based in four meetings sequentially covering the following themes: life stories, illness narratives, life views and end-of-life care preferences. A semi-structured interview guide assists the facilitating nurses. The sessions aims to accumulate in a personal booklet documenting the patient’s individual life stories, health care concerns, preferences for life-sustaining treatment and potential decision-maker |
This approach is based on conversations with patients and relatives, with the aim of completing a legally binding document which the “Let Me Decide: Health and Personal Care Directive” form is in Canada and Australia | |
Advance Directives Markson [25] | Here Advance Directives entailed in depth discussions between physicians, patient, and relatives, and would likely be defined as ACP today. |
Making Health choices, Silvester [30] | Standardized contents of ACP discussions; should include in own words: Current health state, current goal, values & beliefs, future preferences; decision maker |