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1.
J Soc Work End Life Palliat Care. 2019 Jan 17:1-18. doi: 10.1080/15524256.2018.1547673. [Epub ahead of print]

Advance Care Planning in the Nursing Home Setting: A Practice Improvement Evaluation.

Author information

1
a Department of Family Practice , University of British Columbia , Vancouver , British Columbia , Canada.
2
b Family Practice Research Office , Vancouver Coastal Health Research Institute's Centre for Clinical Epidemiology and Evaluation , Vancouver , British Columbia , Canada.
3
e Centre for Clinical Epidemiology & Evaluation, Vancouver Coastal Health Research Institute, Vancouver, British Columbia, Canada.
4
c Practice Support Program, General Practice Services Committee , Government of British Columbia and Doctors of British Columbia , Vancouver , British Columbia , Canada.
5
d Health Research Consultant , Balfour , British Columbia , Canada.

Abstract

This study evaluated a practice improvement initiative conducted over a 6 month period in 15 Canadian nursing homes. Goals of the initiative included: (1) use the Plan-Do-Study-Act (PDSA) model to improve advance care planning (ACP) within the sample of nursing homes; (2) investigate whether improved ACP practice resulted in a change in residents' hospital use and ACP preferences for home-based care; (3) engage participating facilities in regular data collection to inform the initiative and provide a basis for reflection about ACP practice and; (4) foster a team-based participatory care culture. The initiative entailed two cycles of learning sessions followed by implementation of ACP practice improvement projects in the facilities using a PDSA approach by participating clinicians (e.g., physicians, social workers, nurses). Clinicians reported significantly increased confidence in many dimensions of ACP activities. Rates of hospital use and resident preference for home-based care did not change significantly. The initiative established routine data collection of outcomes to inform practice change, and successfully engaged physicians and non-physician clinicians to work together to improve ACP practices. Results suggest recurrent PDSA cycles that engage a 'critical mass' of clinicians may be warranted to reinforce the standardization of ACP in practice.

KEYWORDS:

Clinical improvement; Plan-Do-Study-Act; Advance Care Planning; nursing home; quality of care; health services research; palliative care; end of life; learning systems; nursing home

2.
BMJ Open. 2019 Jan 15;9(1):e025255. doi: 10.1136/bmjopen-2018-025255.

Prevalence and correlates of advance care directives among older Australians accessing health and residential aged care services: multicentre audit study.

Author information

1
Advance Care Planning Australia, Austin Health, Heidelberg, Victoria, Australia.
2
Faculty of Medicine, Dentistry and Health Science, University of Melbourne, Melbourne, Victoria, Australia.
3
Department of Epidemiology and Preventative Medicine, Monash University, Melbourne, Victoria, Australia.
4
Rural Clinical School of Western Australia, University of Western Australia, Albany, Western Australia, Australia.
5
Centre for Learning and Research in Palliative Care, Hammond Care, Greenwich Hospital and Sydney Medical School, University of Sydney, Sydney, New South Wales, Australia.
#
Contributed equally

Abstract

OBJECTIVES:

It is important that the outcomes of advance care planning (ACP) conversations are documented and available at the point of care. Advance care directives (ACDs) are a subset of ACP documentation and refer to structured documents that are completed and signed by competent adults. Other ACP documentation includes informal documentation by the person or on behalf of the person by someone else (eg, clinician, family). The primary objectives were to describe the prevalence and correlates of ACDs among Australians aged 65 and over accessing health and residential aged care services. The secondary aim was to describe the prevalence of other ACP documentation.

DESIGN AND SETTING:

A prospective multicentre health record audit in general practices (n=13), hospitals (n=12) and residential aged care facilities (RACFs; n=26).

PARTICIPANTS:

503 people attending general practice, 574 people admitted to hospitals and 1208 people in RACFs.

PRIMARY AND SECONDARY OUTCOME MEASURES:

Prevalence of one or more ACDs; prevalence of other ACP documentation.

RESULTS:

29.8% of people had at least one ACD on file. The majority were non-statutory documents (20.9%). ACD prevalence was significantly higher in RACFs (47.7%) than hospitals (15.7%) and general practices (3.2%) (p<0.001), and varied across jurisdictions. Multivariate logistic regression showed that the odds of having an ACD were positively associated with greater functional impairment and being in an RACF or hospital compared with general practice. 21.6% of people had other ACP documentation.

CONCLUSIONS:

In this study, 30% of people had ACDs accessible and a further 20% had other ACP documentation, suggesting that approximately half of participants had some form of ACP. Correlates of ACD completion were greater impairment and being in an RACF or hospital. Greater efforts to promote and standardise ACDs across jurisdictions may help to assist older people to navigate and complete ACDs and to receive care consistent with their preferences.

TRIAL REGISTRATION NUMBER:

ACTRN12617000743369.

KEYWORDS:

advance care directive; advance care planning; clinical audit; prevalence; quality in health care

PMID:
30647047
DOI:
10.1136/bmjopen-2018-025255
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Conflict of interest statement

Competing interests: None declared.

3.
BMC Cancer. 2019 Jan 14;19(1):63. doi: 10.1186/s12885-019-5272-6.

Medical oncology outpatients' preferences and experiences with advanced care planning: a cross-sectional study.

Waller A1,2,3, Turon H4,5,6, Bryant J4,5,6, Zucca A4,5,6, Evans TJ7, Sanson-Fisher R4,5,6.

Author information

1
Health Behaviour Research Collaborative, School of Medicine and Public Health, Faculty of Health and Medicine, University of Newcastle, Callaghan, NSW, Australia. amy.waller@newcastle.edu.au.
2
Priority Research Centre for Health Behaviour, University of Newcastle, Callaghan, NSW, Australia. amy.waller@newcastle.edu.au.
3
Hunter Medical Research Institute, New Lambton Heights, NSW, Australia. amy.waller@newcastle.edu.au.
4
Health Behaviour Research Collaborative, School of Medicine and Public Health, Faculty of Health and Medicine, University of Newcastle, Callaghan, NSW, Australia.
5
Priority Research Centre for Health Behaviour, University of Newcastle, Callaghan, NSW, Australia.
6
Hunter Medical Research Institute, New Lambton Heights, NSW, Australia.
7
Clinical Research Design and Statistics Support Unit, Hunter Medical Research Institute, New Lambton Heights, NSW, Australia.

Abstract

BACKGROUND:

Medical oncology outpatients are a group for whom advance care planning (ACP) activities are particularly relevant. Patient views can help prioritise areas for improving end of life communication. The study aimed to determine in a sample of medical oncology outpatients: (1) the perceived importance of participating in ACP activities; (2) the proportion of patients who have ever participated in ACP activities; and (3) the proportion of patients who had not yet participated in ACP activities who were willing to do so in next month.

METHODS:

Adult medical oncology outpatients in two Australian cancer treatment centres were consecutively approached to complete a pen-and-paper survey. Items explored perceived importance, previous participation, and willingness to participate across key ACP activities including: discussing wishes with their family or doctor; recording wishes in a written document; appointing a substitute decision maker (SDM); and discussing life-expectancy.

RESULTS:

185 participants completed the survey (51% consent rate). Most patients agreed it was important to: discuss end of life wishes with family (85%) and doctors (70%) and formally record wishes (73%). Few had discussed end of life wishes with a doctor (11%), recorded their wishes (15%); chosen a SDM (28%); discussed life expectancy (30%); or discussed end of life wishes with family (30%). Among those who had not participated in ACP, most were willing to discuss life expectancy (66%); discuss end of life wishes with family (57%) and a doctor (55%); and formally record wishes (56%) in the next month. Fewer wanted to appoint a SDM (40%).

CONCLUSION:

Although medical oncology outpatients perceive ACP activities are important, rates of uptake are relatively low. The willingness of many patients to engage in ACP activities suggests a gap in current ACP practice. Efforts should focus on ensuring patients and families have clarity about the legal and other ramifications of ACP activities, and better education and training of health care providers in initiating conversations about end of life issues.

4.
Nursing. 2018 Nov;48(11):63-66. doi: 10.1097/01.NURSE.0000546456.63746.1b.

Advance care planning: Meeting a crucial need.

Author information

1
Jessica Tully is the director of medical and surgical nursing at Midland Memorial Hospital in Midland, Tex.

Abstract

PURPOSE:

To improve the healthcare team's comfort and efficacy with end-of-life conversations at a 474-licensed bed community acute care hospital through training on advance care planning (ACP) and advance directives (ADs).

METHODS:

This instructional program utilized training sessions, including pre- and posttests, to demonstrate enhanced knowledge of and confidence in discussing ACP and ADs among healthcare professionals engaging in end-of-life conversations with patients and their families.

RESULTS:

There were 138 participants included in the program. A pretest and a posttest were completed by the attendees at the beginning and end of training, respectively. Data indicated improved preparedness for end-of-life conversations following the training sessions.

CONCLUSION:

Training specific to ACP and ADs increases confidence with end-of-life conversations. With the proper knowledge and resources, the healthcare staff can foster these difficult conversations. Although the program exceeded expectations, the sample is considered small and more research will be needed.

5.
Asia Pac J Oncol Nurs. 2019 Jan-Mar;6(1):72-77. doi: 10.4103/apjon.apjon_38_18.

What Patients, Families, Health Professionals and Hospital Volunteers Told Us about Advance Directives.

Author information

1
The Nethersole School of Nursing, The Chinese University of Hong Kong, Hong Kong, China.
2
Department of Social Work and Social Administration, University of Hong Kong, Hong Kong, China.
3
Palliative Care Department, Shatin Hospital and Bradbury Hospice, Hong Kong, China.
4
Palliative Medical Unit, Grantham Hospital, Hong Kong, China.

Abstract

Objective:

An advance directive (AD) is a document that allows mentally competent individuals to make healthcare decisions about their condition that they might no longer be able to make in the future. This study aimed to explore the perceptions of AD decision-making of various stakeholders in the Chinese palliative care setting.

Methods:

Patients with life-limiting diseases, family members, health professionals, and hospital volunteers were recruited in the palliative care unit of two hospitals in Hong Kong by purposive sampling on age and sex. Qualitative semi-structured individual interviews were conducted.

Results:

A total of 96 participants, including 24 participants from each group, completed the study. Most participants were willing to discuss AD but had not heard about it before the interview. Patients regarded the decisions made in the AD as a way to reduce their future sufferings, while they also considered the welfare of their family. Family members were concerned about the psychological burden when discussing about the AD. Health professionals emphasized the logistic and process of the AD. Hospital volunteers pointed out the impact of Chinese culture on AD acceptance and the lack of AD promotion in the community.

Conclusions:

The findings of the study indicated the need for more promotion of AD in the society. It is important to consider the opinion of a patient's family during AD discussions in a Chinese culture. Health professionals may need to identify the best timing for the discussion of AD with patients and their families.

KEYWORDS:

Advance care planning; Chinese; advance directives; decision-making; end-of-life care; palliative care

Conflict of interest statement

There is no conflicts of interest.

6.
Nephrol Nurs J. 2018 Nov-Dec;45(6):513-523.

Advance Care Planning and Chronic Kidney Disease: What Do Patients Know and What Do They Want?

Author information

1
Associate Professor, Lakehead University, the Faculty of Health and Behavioral Sciences, Orillia, Ontario, Canada.
2
Renal Social Worker, Regional Kidney Care Program of Simcoe Muskoka, Orillia, Ontario, Canada.
3
Dialysis Nurse, Regional Kidney Care Program of Simcoe Muskoka, Orillia, Canada.

Abstract

There is a gap in the research literature regarding advance care planning with this population of patients. This article reports on a study about the end-of-life knowledge, needs, and preferences of patients on hemodialysis - as reported by patients - within a hospital or community-based setting that addresses this gap. Data were collected using a survey method; non-probability, consecutive sampling (n=133) resulted in a high response rate of 64.0%. There were three key findings: 1) patients do not identify themselves as having a progressive health condition, 2) patients are comfortable discussing end-of-life issues, and 3) patients want discussions about end-of-life care when they request to do so or when their health worsens. We report on these findings and discuss three key recommendations: 1) patients with chronic kidney disease be consulted about the appropriate time for advance care planning, 2) symptom management needs greater attention, and 3) the role of family requires more consideration.

KEYWORDS:

advance care planning; chronic kidney diseaseD; end of life; hemodialysis; quantitative survey research

PMID:
30585708
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Conflict of interest statement

The authors reported no actual or potential conflict of interest in relation to this continuing nursing education activity.

7.
Congenit Heart Dis. 2018 Dec 21. doi: 10.1111/chd.12735. [Epub ahead of print]

Perspectives on advance care planning and palliative care among adults with congenital heart disease.

Author information

1
Division of Cardiology, School of Medicine, University of Washington, Seattle, Washington.
2
Cambia Palliative Care Center of Excellence, University of Washington, Seattle, Washington.

Abstract

BACKGROUND:

Patients with adult congenital heart disease (ACHD) report that advance care planning (ACP) is important, and that they want information about prognosis. However, recognizing importance and being willing to participate are different constructs, and how and when to begin ACP and palliative care discussions remains ill-defined.

METHODS:

We conducted a cross-sectional survey of 150 consecutive outpatients to assess willingness to participate in ACP, with whom, and important barriers and facilitators to these discussions.

RESULTS:

The majority of participants (69%) reported being willing to participate in ACP; 79% to have a meeting to discuss goals and care preferences; and 91% to speak to a clinician who specializes in palliative care. Being married and anticipating a shorter lifespan were associated with increased reported willingness to participate in ACP. The health care provider with whom most participants preferred to have these discussions was their ACHD clinician. Participants identified important barriers and facilitators to these discussions.

CONCLUSION:

Patients with ACHD report being willing to participate in ACP and palliative care discussions. Patients prefer to have these discussions with their ACHD clinicians, thus ACHD clinicians need to be prepared to address these issues as part of routine care.

KEYWORDS:

adult congenital heart disease; advance care planning; palliative care

PMID:
30575286
DOI:
10.1111/chd.12735
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8.
J Am Geriatr Soc. 2018 Dec 10. doi: 10.1111/jgs.15656. [Epub ahead of print]

Predictors of Advance Care Planning in Older Women: The Nurses' Health Study.

Author information

1
Channing Division of Network Medicine, Department of Medicine, Brigham and Women's Hospital/Harvard Medical School, Boston, Massachusetts.
2
Division of Geriatrics and Palliative Care, University of Michigan School of Medicine, Ann Arbor, Michigan.
3
The Dartmouth Institute for Health Policy and Clinical Practice, Geisel School of Medicine, Lebanon, New Hampshire.
4
Department of Epidemiology, Harvard T. H. Chan School of Public Health, Boston, Massachusetts.
5
IBM-Watson Health, Cambridge, Massachusetts.
6
Department of Health Policy, Vanderbilt University School of Medicine, Nashville, Tennessee.

Abstract

BACKGROUND/OBJECTIVES:

Relatively little is known regarding predictors of advance care planning (ACP) in former nurses. We aimed to evaluate potential predictors of ACP documentation and discussion.

DESIGN:

Cross-sectional study, 2012-2014.

SETTING:

Nurses' Health Study.

PARTICIPANTS:

A total of 60,917 community-dwelling female nurses aged 66 to 93 years living across the United States.

MEASUREMENTS:

Based on self-reports, participants were categorized as having (1) only ACP documentation, (2) ACP documentation and a recent ACP discussion with a healthcare provider, or (3) neither. Multivariable log-binomial models were used to estimate prevalence ratios (PRs) and 95% confidence intervals (CIs) of the two separate ACP categories vs those with neither. We evaluated various demographic, health, and social factors.

RESULTS:

The large majority (84%) reported ACP documentation; 35% reported a recent ACP discussion. Demographic factors such as age and race were associated with both ACP categories. In multivariable analyses, race was most strongly associated: compared with whites, African Americans were 27% less likely (PR = 0.73; 95% CI = 0.69-0.78) to report ACP documentation alone and 41% (PR = 0.59; 95% CI = 0.54-0.66) less likely to report documentation with discussion. Additionally, health/healthcare-related characteristics were more strongly associated with ACP documentation plus discussion. Women with functional limitations (PR = 1.15; 95% CI = 1.10-1.20), women who were recently hospitalized (PR: 1.10; 95% CI = 1.08-1.12) or women who had seen a physician for health symptoms (PR = 1.43; 95% CI = 1.35-1.52) or screening (PR = 1.40; 95% CI = 1.32-1.49) were more likely to report having both ACP documentation and discussion. Social factors showed limited relationships with ACP documentation only; for documentation plus discussion, being widowed and living alone was associated with higher prevalence (PR = 1.21; 95% CI = 1.19-1.24) and having little emotional support was associated with lower prevalence (PR = 0.84; 95% CI = 0.81-0.86).

CONCLUSIONS:

Among older nurses, most of whom reported having documented ACP, 35% reported recent patient-clinician ACP discussions, indicating a major participatory gap in an element critical to ACP effectiveness. Even in nurses, African Americans reported less ACP documentation or discussion.

KEYWORDS:

advance care planning; community dwelling; epidemiology; nurses

PMID:
30537051
DOI:
10.1111/jgs.15656
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9.
BMC Palliat Care. 2018 Dec 5;17(1):127. doi: 10.1186/s12904-018-0379-0.

Advance care planning after hospital discharge: qualitative analysis of facilitators and barriers from patient interviews.

Author information

1
Department of Medicine, The Ottawa Hospital, University of Ottawa, Ottawa, ON, Canada.
2
Ottawa Hospital Research Institute, Ottawa, ON, Canada.
3
Department of Medicine, The Ottawa Hospital, University of Ottawa, Ottawa, ON, Canada. dkobewka@toh.ca.
4
Ottawa Hospital Research Institute, Ottawa, ON, Canada. dkobewka@toh.ca.

Abstract

BACKGROUND:

Patients who engage in Advance Care Planning (ACP) are more likely to get care consistent with their values. We sought to determine the barriers and facilitators to ACP engagement after discharge from hospital.

METHODS:

Prior to discharge from hospital eligible patients received a standardized conversation about prognosis and ACP. Each patient was given an ACP workbook and asked to complete it over the following four weeks. We included frail elderly patients with a high risk of death admitted to general internal medicine wards at a tertiary care academic teaching hospital. Four weeks after discharge we conducted semi-structured interviews with patients. Interviews were transcribed, coded and analysed with thematic analysis. Themes were categorized according to the theoretical domains framework.

RESULTS:

We performed 17 interviews. All Theoretical Domain Framework components except for Social/Professional Identity and Behavioral Regulation were identified in our data. Poor knowledge about ACP and physician communication skills were barriers partially addressed by our intervention. Some patients found it difficult to discuss ACP during an acute illness. For others acute illness made ACP discussions more relevant. Uncertainty about future health motivated some participants to engage in ACP while others found that ACP discussions prevented them from living in the moment and stripped them of hope that better days were ahead.

CONCLUSIONS:

For some patients acute illness resulting in admission to hospital can be an opportunity to engage in ACP conversations but for others ACP discussions are antithetical to the goals of hospital care.

KEYWORDS:

Advance care planning; Communication; Conversation guide

10.
J Am Geriatr Soc. 2019 Jan;67(1):164-171. doi: 10.1111/jgs.15630. Epub 2018 Dec 3.

Effect of Living Wills on End-of-Life Care: A Systematic Review.

Author information

1
Département de Médecine Générale, Faculté de Médecine, Université de Nantes, Nantes, France.

Abstract

OBJECTIVES:

To comprehensively assess the effect of a living will on end-of-life care.

DESIGN:

Systematic review with narrative analysis following Preferred Reporting Items for Systematic Reviews and Meta-Analyses methodology.

PARTICIPANTS:

All interventional and observational studies were included, excepting those with fictive cases. Included studies were conducted in adults with and without living wills, excluding individuals with specific psychiatric living wills.

MEASUREMENTS:

Two authors independently extracted study and participant characteristics and outcomes related to end-of-life care (place of death, hospitalization and intensive care unit management, life-sustaining treatments, restricted care). Risk of bias was assessed using the Risk Of Bias In Non-randomized Studies of Interventions tool.

RESULTS:

From 7,596 records identified, 28 observational studies were included, 19 conducted in the United States, 7 in Europe, and 1 each in Canada and Australia. Place of death was assessed in 14 studies, life-sustaining treatments in 13, decision for restricted care in 12, and hospitalization in 8. Risk of bias was serious for 26 studies and moderate for 2. Twenty-one studies reported significantly less medical management for individuals with a living will, 3 reported more medical management, and the difference was not significant in 37.

CONCLUSION:

Methodological quality of included studies was insufficient to offer reliable results. The effect of living wills appears limited in view of the importance and direction of potential biases. Further studies including larger populations, considering main confounding factors, and documenting the real presence of a living will in medical records are necessary to reach stronger conclusions on the effect of living wills on end-of-life care. J Am Geriatr Soc 67:164-171, 2019.

KEYWORDS:

adherence; advance directive; living wills; systematic review; terminal care

PMID:
30508301
DOI:
10.1111/jgs.15630
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Publication type

Publication type

11.
South Med J. 2018 Dec;111(12):721-726. doi: 10.14423/SMJ.0000000000000903.

Physician Advance Care Planning Experiences and Beliefs by General Specialty Status and Sex.

Author information

1
From the Departments of Family Medicine, Population and Public Health Sciences, and Pediatrics, Boonshoft School of Medicine, Wright State University, Dayton, Ohio.

Abstract

OBJECTIVES:

Advance care planning (ACP) involvement could be substantially different by physician specialty or sex group, with implications for training and methods to increase ACP activities. The objective of this article is to compare primary care physicians (PCPs) and other specialty physicians and female compared with male physicians' views and interactions surrounding ACP.

METHODS:

This was a secondary analysis of an online anonymous survey distributed through a survey link to healthcare providers in hospital, ambulatory, and hospice settings in the greater Dayton, Ohio area in preparation for a community-wide advance care planning multitiered intervention. The measures included demographic data and questions regarding personal ACP decisions/experiences, opinions surrounding ACP in healthcare settings, and willingness to facilitate ACP with patients.

RESULTS:

There were 129 physician respondents, of which 39 (30.2%) were PCPs, and 33 (25.6%) were women. Most expressed interest in ACP, responding positively to a desire for more training, and approximately 25% were willing to be trained to teach others. The respondents by specialty group were similar in age and race, the presence or absence of religious affiliation, and stated frequency of ACP conversations. More than half (52.5%) reported having ACP conversations at least twice per month. The female physicians were younger and more likely to be in primary care. Female physicians also were more likely to discuss ACP with patients (P = 0.017), report formal training for ACP (P = 0.025), and be more willing to permit other healthcare provider types to be involved with ACP. PCPs reported time as a barrier more frequently than specialty physicians (P = 0.012). Other barriers to ACP were reported, including space, personal discomfort, and concerns about patient or family distress or disagreement.

CONCLUSIONS:

Many physicians, regardless of specialty type or sex, are interested in undertaking more ACP conversations and being trained to do so. Overall, more female physicians than male physicians were involved and interested in various aspects of ACP, and they were more accepting of the involvement of nonphysician healthcare professionals in ACP. Multiple barriers for clinicians, patients, and families were identified that will need to be addressed by work settings or through education to increase ACP.

13.
BMC Fam Pract. 2018 Nov 28;19(1):184. doi: 10.1186/s12875-018-0868-5.

Advance care planning conversations with palliative patients: looking through the GP's eyes.

Author information

1
Radboud Institute for Health Sciences, IQ healthcare, Radboud university medical center, Nijmegen, The Netherlands. Anne.Wichmann@radboudumc.nl.
2
Radboud Institute for Health Sciences, IQ healthcare, Radboud university medical center, Nijmegen, The Netherlands.
3
Department of Anesthesiology, Pain and Palliative Medicine, Radboud university medical center, Nijmegen, The Netherlands.
4
Section Ethics, University Kampen, Kampen, The Netherlands.

Abstract

BACKGROUND:

Although it is often recommended that general practitioners (GPs) initiate advance care planning (ACP), little is known about their experiences with ACP. This study aimed to identify GP experiences when conducting ACP conversations with palliative patients, and what factors influence these experiences.

METHODS:

Dutch GPs (N = 17) who had participated in a training on timely ACP were interviewed. Data from these interviews were analysed using direct content analysis.

RESULTS:

Four themes were identified: ACP and society, the GP's perceived role in ACP, initiating ACP and tailor-made ACP. ACP was regarded as a 'hot topic'. At the same time, a tendency towards a society in which death is not a natural part of life was recognized, making it difficult to start ACP discussions. Interviewees perceived having ACP discussions as a typical GP task. They found initiating and timing ACP easier with proactive patients, e.g. who are anxious of losing capacity, and much more challenging when it concerned patients with COPD or heart failure. Patients still being treated in hospital posed another difficulty, because they often times are not open to discussion. Furthermore, interviewees emphasized that taking into account changing wishes and the fact that not everything can be anticipated, is of the utmost importance. Moreover, when patients are not open to ACP, at a certain point it should be granted that choosing not to know, for example about where things are going or what possible ways of care planning might be, is also a form of autonomy.

CONCLUSIONS:

ACP currently is a hot topic, which has favourable as well as unfavourable effects. As GPs experience difficulties in initiating ACP if patients are being treated in the hospital, future research could focus on a multidisciplinary ACP approach and the role of medical specialists in ACP. Furthermore, when starting ACP with palliative patients, we recommend starting with current issues. In doing so, a start can be made with future issues kept in view. Although the tension between ACP's focus on the patient's direction and the right not to know can be difficult, ACP has to be tailored to each individual patient.

KEYWORDS:

Advance care planning; General practice; Palliative medicine; Qualitative research

14.
J Pain Symptom Manage. 2018 Nov 22. pii: S0885-3924(18)31076-5. doi: 10.1016/j.jpainsymman.2018.11.014. [Epub ahead of print]

FAmily CEntered (FACE) Advance Care Planning among African-American and non-African-American Adults Living with HIV in Washington, DC: A Randomized Controlled Trial to Increase Documentation & Health Equity.

Author information

1
Division of Adolescent and Young Adult Medicine, Children's National, Center for Translational Science/Children's Research Institute, Washington, DC; George Washington University School of Medicine and Health Sciences, Washington, DC. Electronic address: mlyon@childrensnational.org.
2
Washington DC Veterans Affairs Medical Center.
3
Division of Adolescent and Young Adult Medicine, Children's National, Center for Translational Science/Children's Research Institute, Washington, DC; George Washington University School of Medicine and Health Sciences, Washington, DC.
4
George Washington University School of Medicine and Health Sciences, Washington, DC; Washington DC Veterans Affairs Medical Center.
5
MedStar: Health Research Institute and Washington Hospital Center; George Washington University Milken School of Public Health, Washington, DC.
6
Division of Adolescent and Young Adult Medicine, Children's National, Center for Translational Science/Children's Research Institute, Washington, DC.
7
Office of the Clinical Director, National Human Genome Research Institute, National Institutes of Health, Bethesda, MD, USA.

Abstract

CONTEXT:

No prospective studies address disease-specific Advance Care Planning (ACP) for adults living with HIV/AIDS.

OBJECTIVE:

To examine the efficacy of FAmily-CEntered (FACE) ACP in increasing advance care planning and advance directive documentation in the medical record.

METHODS:

Longitudinal, two-arm, randomized controlled trial with intent-to-treat design recruited from 5 hospital-based outpatient HIV clinics in Washington, DC. Adults living with HIV and their surrogate decision makers (N=233 dyads) were randomized to either an intensive facilitated two-session FACE ACP (Next Steps: Respecting Choices goals of care conversation and Five Wishes advance directive) or Healthy Living Control (conversations about developmental/relationship history and nutrition).

RESULTS:

Patients (n=223) mean age: 51 years, 56% male, 86% African-American. One hundred ninety-nine dyads participated in the intervention. At baseline, only 13% of patients had an advance directive. Three months post-intervention, this increased to 59% for the FACE ACP group versus 17% in the control group (p<0.0001). Controlling for race, the odds of having an advance directive in the medical record in the FACE ACP group was approximately 7 times greater than controls (Adjusted Odds Ratio=6.58, 95% C.I: 3.21-13.51, p<0.0001). Among African-Americans randomized to FACE, 58% had completed/documented advance directives versus 20% of controls (p<0.0001).

CONCLUSIONS:

The FACE ACP intervention significantly improved ACP completion and advance directive documentation in the medical record among both African-American and non-African-American adults living with HIV in Washington, D.C., providing health equity in ACP which can inform best practices.

KEYWORDS:

African-American; HIV; advanced care planning; advanced directive; decision-making; electronic health records

15.
Pediatrics. 2018 Nov;142(5). pii: e20173869. doi: 10.1542/peds.2017-3869. Epub 2018 Oct 19.

Advance Care Planning and HIV Symptoms in Adolescence.

Author information

1
Divisions of Adolescent and Young Adult Medicine and mlyon@childrensnational.org.
2
Department of Pediatrics, School of Medicine and Health Sciences, George Washington University, Washington, District of Columbia.
3
Research Department, Children's Diagnostic and Treatment Center, Fort Lauderdale, Florida.
4
Divisions of Adolescent and Young Adult Medicine and.
5
Department of Infectious Diseases, St. Jude Children's Research Hospital, Memphis, Tennessee.
6
Respecting Choices, Coalition to Transform Advanced Care Innovations, Washington, District of Columbia; and.
7
Department of Pediatrics, Division of Infectious Disease and Immunology, Batchelor Children's Research Institute, University of Miami Miller School of Medicine, Miami, Florida.
8
Biostatistics and Study Methodology, Center for Translational Science, Children's Research Institute, Children's National, Washington, District of Columbia.

Abstract

OBJECTIVES:

To determine the effect of family-centered pediatric advance care planning (FACE pACP) on HIV-specific symptoms.

METHODS:

In this single-blinded, randomized controlled trial conducted at 6 US hospital-based HIV clinics, 105 adolescent-family dyads, randomly assigned from July 2011 to June 2014, received 3 weekly sessions in either the FACE pACP arm ([1] pediatric advance care planning survey, [2] Respecting Choices interview, and [3] 5 Wishes directive) or the control arm ([1] developmental history, [2] safety tips, and [3] nutrition and exercise tips). The General Health Assessment for Children measured patient-reported HIV-specific symptoms. Latent class analyses clustered individual patients based on symptom patterns. Path analysis examined the mediating role of dyadic treatment congruence with respect to the intervention effect on symptom patterns.

RESULTS:

Patients were a mean age of 17.8 years old, 54% male, and 93% African American. Latent class analysis identified 2 latent HIV-symptom classes at 12 months: higher symptoms and suffering (27%) and lower symptoms and suffering (73%). FACE pACP had a positive effect on dyadic treatment congruence (β = .65; 95% CI: 0.04 to 1.28), and higher treatment congruence had a negative effect on symptoms and suffering (β = -1.14; 95% CI: -2.55 to -0.24). Therefore, FACE pACP decreased the likelihood of symptoms and suffering through better dyadic treatment congruence (β = -.69; 95% CI: -2.14 to -0.006). Higher religiousness (β = 2.19; 95% CI: 0.22 to 4.70) predicted symptoms and suffering.

CONCLUSIONS:

FACE pACP increased and maintained agreement about goals of care longitudinally, which lowered adolescents' physical symptoms and suffering, suggesting that early pACP is worthwhile.

PMID:
30341154
PMCID:
PMC6317555
[Available on 2019-11-01]
DOI:
10.1542/peds.2017-3869
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Conflict of interest statement

POTENTIAL CONFLICT OF INTEREST: Dr Lyon developed and adapted the Lyon Advance Care Planning Survey adolescent and surrogate versions used in session 1 of the 3-session intervention. Ms Briggs developed and adapted the statement of treatment preferences used to obtain study results on treatment agreement between the adolescent and family; the other authors have indicated they have no potential conflicts of interest to disclose.

16.
Br J Anaesth. 2018 Nov;121(5):1138-1147. doi: 10.1016/j.bja.2018.05.075. Epub 2018 Aug 8.

Advance-care-planning and end-of-life discussions in the perioperative period: a review of healthcare professionals' knowledge, attitudes, and training.

Author information

1
Department of Anaesthesia and Perioperative Medicine, University College London Hospitals, London, UK. Electronic address: douglas.blackwood@nhs.net.
2
Department of Applied Health Research, University College London, London, UK.
3
Department of Anaesthesia and Perioperative Medicine, University College London Hospitals, London, UK; National Institute of Health Research Biomedical Research Centre, London, UK.
4
Department of Anaesthesia and Perioperative Medicine, University College London Hospitals, London, UK; Centre for Anaesthesia & Perioperative Medicine, University College London, London, UK.

Abstract

Whilst the risk of dying after an operation in the UK is very small, the volume of surgery means that there are 20 000-25 000 deaths each year. For these patients and others who suffer major complications, critical illness often leads to a loss of capacity. If wishes are not discussed in advance, the patients may be excluded from meaningful involvement in decisions affecting their care. The preoperative period has been postulated as one where advance care planning could begin by engaging in voluntary conversations about an individual's wishes, priorities, and values should he/she loses capacity. There remain unanswered questions as to whether healthcare professionals are supportive of a move towards better engagement in such discussions with patients. Even if the reception to the idea is positive, it is clear that appropriate training and understanding will be required. The aims of this review were to describe the current knowledge and attitudes of healthcare professionals towards advance care planning in the perioperative setting, and to outline any educational programmes or training limitations that have been identified. Seven articles that met the inclusion criteria were identified. They indicate that healthcare professionals mostly have a positive view of advance care planning in the perioperative period, and there is little training or educational content available. Despite this, most healthcare professionals report feeling well equipped to have such discussions. Evidence was not found of advance care planning becoming a routine part of training or practice in the care of patients in the lead up to high-risk surgery.

KEYWORDS:

advance care planning; health personnel; perioperative care

PMID:
30336859
DOI:
10.1016/j.bja.2018.05.075
[Indexed for MEDLINE]
Icon for Elsevier Science Icon for South & East Metropolitan Health Service Library, Australia
17.
J Palliat Med. 2018 Oct 18. doi: 10.1089/jpm.2018.0262. [Epub ahead of print]

Advance Care Planning Experiences and Preferences among People with Cystic Fibrosis.

Author information

1
1 Department of Pediatrics, Massachusetts General Hospital , Boston, Massachusetts.
2
2 Department of Pediatrics, Harvard Medical School , Boston, Massachusetts.
3
3 Department of Psychiatry, Massachusetts General Hospital , Boston, Massachusetts.
4
4 Department of Psychiatry, Harvard Medical School , Boston, Massachusetts.
5
5 Department of Biostatistics, Massachusetts General Hospital , Boston, Massachusetts.

Abstract

BACKGROUND:

Advance care planning (ACP) is recommended for people with cystic fibrosis (CF), yet guidance for optimal implementation is lacking.

OBJECTIVE:

To assess ACP-related thoughts, comfort level, and preferences among people with CF to guide evidence-based routine implementation of ACP in the CF clinic.

DESIGN:

A cross-sectional survey assessed ACP-related experiences and preferences.

SUBJECTS:

Thirty-eight adolescents and adults with CF from an urban CF center.

RESULTS:

Few subjects reported talking to their CF team about ACP care preferences (5%) or completing advance directives detailing desired medical treatments (11%). However, most participants worried about living with advanced disease (84%) and felt comfortable discussing ACP preferences with CF providers (92%). Subjects largely preferred that ACP conversations occur when they are generally healthy, in the outpatient setting, and with any familiar CF team member. Disease severity was not associated with frequency of worry about living with advanced disease, comfort level with ACP discussions, or ACP setting preferences.

CONCLUSIONS:

People with CF worry about advanced disease and feel comfortable discussing ACP, but need more guidance to understand and document ACP choices. CF patient experiences and preferences support implementation of an early, active approach to ACP for people with CF.

KEYWORDS:

advance care planning; advance directive; cystic fibrosis; end-of-life care; palliative care

18.
Crit Care Med. 2019 Jan;47(1):101-108. doi: 10.1097/CCM.0000000000003472.

Advance Care Planning and Parent-Reported End-of-Life Outcomes in Children, Adolescents, and Young Adults With Complex Chronic Conditions.

Author information

1
Division of Medicine Critical Care, Department of Medicine, Boston Children's Hospital, Boston, MA.
2
Division of Pediatric Palliative Care, Department of Psychosocial Oncology and Palliative Care, Dana Farber Cancer Institute, Boston, MA.

Abstract

OBJECTIVES:

For children, adolescents, and young adults with complex chronic conditions advance care planning may be a vital component of optimal care. Advance care planning outcomes research has previously focused on seriously ill adults and adolescents with cancer where it is correlated with high-quality end-of-life care. The impact of advance care planning on end-of-life outcomes for children, adolescents, and young adults with complex chronic conditions is unknown, thus we sought to evaluate parental preferences for advance care planning and to determine whether advance care planning and assessment of specific family considerations during advance care planning were associated with differences in parent-reported end-of-life outcomes.

DESIGN:

Cross-sectional survey.

SETTING:

Large, tertiary care children's hospital.

SUBJECTS:

Bereaved parents of children, adolescents, and young adults with complex chronic conditions who died between 2006 and 2015.

INTERVENTIONS:

None.

MEASUREMENT AND MAIN RESULTS:

One-hundred fourteen parents were enrolled (54% response rate) and all parents reported that advance care planning was important, with a majority (70%) endorsing that discussions should occur early in the illness course. Parents who reported advance care planning (65%) were more likely to be prepared for their child's last days of life (adjusted odds ratio, 3.78; 95% CI, 1.33-10.77), to have the ability to plan their child's location of death (adjusted odds ratio, 2.93; 95% CI, 1.06-8.07), and to rate their child's quality of life during end-of-life as good to excellent (adjusted odds ratio, 3.59; 95% CI, 1.23-10.37). Notably, advance care planning which included specific assessment of family goals was associated with a decrease in reported child suffering at end-of-life (adjusted odds ratio, 0.23; 95% CI, 0.06-0.86) and parental decisional regret (adjusted odds ratio, 0.42; 95% CI, 0.02-0.87).

CONCLUSIONS:

Parents of children, adolescents, and young adults with complex chronic conditions highly value advance care planning, early in the illness course. Importantly, advance care planning is associated with improved parent-reported end-of-life outcomes for this population including superior quality of life. Further studies should evaluate strategies to ensure high-quality advance care planning including specific assessment of family goals.

19.
J Am Geriatr Soc. 2018 Oct;66(10):2017-2021. doi: 10.1111/jgs.15554. Epub 2018 Oct 5.

Increasing Advance Care Planning Using a Surgical Optimization Program for Older Adults.

Author information

1
Division of Geriatrics, Department of Medicine, University of California, San Francisco, San Francisco, California.
2
Division of Geriatrics, Veterans Affairs Medical Center, San Francisco, California.
3
Department of Surgery, University of California, San Francisco, California.
4
Department of Urology, University of California, San Francisco, California.
5
Division of Hospital Medicine, Department of Medicine, Veterans Affairs Medical Center, San Francisco, California.

Abstract

OBJECTIVES:

To describe an innovative model of care, the Surgery Wellness Program (SWP), that uses a multidisciplinary team to develop and implement preoperative care plans for older adults, and its effect on engagement in advance care planning (ACP).

DESIGN:

Retrospective analysis of clinical demonstration project.

SETTING:

Preoperative optimization program for older adults undergoing surgery at a 796-bed academic tertiary hospital.

PARTICIPANTS:

Older adults (N=131) who participated in the SWP from February 2015 to August 2017.

INTERVENTION:

All SWP participants met with a geriatrician who engaged them in a semistructured ACP discussion. Trained medical and nurse practitioner students were used as health coaches who contacted participants regularly to address and document ACP.

MEASUREMENTS:

Self-report of ACP engagement before and after participation in the SWP was determined using SWP geriatrician and health coach progress notes. Medical records were examined for scanned documentation. Feasibility data on number of health coach calls were collected.

RESULTS:

After completion of the program, the proportion of participants with a designated surrogate increased from 67% to 78% (p<.001), completed advance directive (AD) from 51% to 72% (p<.001), and an AD scanned into the medical record from 14% to 60% (p<.001). Participants who underwent surgery received a median of 4 health coaching calls over a median of 27 days between their clinic visit and surgery. Case examples are presented to highlight how the SWP attends to the many components of the ACP process.

CONCLUSION:

Preoperative optimization programs provide a unique opportunity to engage older adults in ACP.

KEYWORDS:

advance care planning; advance directive; geriatric surgery; older adult; preoperative period

PMID:
30289968
PMCID:
PMC6181775
[Available on 2019-10-05]
DOI:
10.1111/jgs.15554
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20.
Palliat Med. 2018 Oct 4:269216318803487. doi: 10.1177/0269216318803487. [Epub ahead of print]

Advance care planning in community dwellers: A constructivist grounded theory study of values, preferences and conflicts.

Author information

1
1 Division of Critical Care Medicine, University of Western Ontario, London, ON, Canada.
2
2 Department of Anesthesia & Perioperative Medicine, London Health Sciences Centre, University of Western Ontario, London, ON, Canada.
3
3 Centre for Education Research & Innovation, University of Western Ontario, London, ON, Canada.
4
4 Faculty of Health Sciences, University of Western Ontario, London, ON, Canada.

Abstract

BACKGROUND:

Most laypeople have not engaged in any advance care planning. Yet they are expected to articulate choices for life-sustaining interventions when they need admission to an acute care hospital in Canada.

AIM:

To describe how laypeople understand and make decisions for life-sustaining interventions when engaging in advance care planning.

DESIGN:

Semi-structured interviews using constructivist grounded theory methodology and purposive sampling.

SETTING:

Mid-size Canadian urban community Participants: In total, 20 healthy laypeople, 55 years and older, participated in in-depth semi-structured face-to-face interviews. Theoretical sampling was used to explore findings from the first round of interviews. Ten participants were invited for repeat interviews.

RESULTS:

Four major themes were identified. Most participants claimed at the outset that they had engaged in advance care planning, but they were unfamiliar with contemporary life-sustaining interventions and had not factored these into their decisions. Participants' confidence in their substitute decision makers precluded them from having explicit discussions with these individuals. Participants expressed their values and preferences in terms of unacceptable functional outcomes from serious illness, rather than desired interventions. The process of articulating their preferences within the interviews was subject to decision conflicts, which in turn helped them re-evaluate and refine their decisions.

CONCLUSION:

Advance care planning for the healthy older adult is challenging. Meaningful engagement may lead to conflicts in decision-making. Efforts to improve engagement must reflect what patients know and understand, their focus on unacceptable negative outcomes rather than interventions, and the need for iterative discussions with health-care providers.

KEYWORDS:

Advance care planning; decision-making; end-of-life care; intensive care units; resuscitation; substitute decision maker; terminal care

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