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Meta-Analysis
. 2020 Feb 27;2(2):CD013022.
doi: 10.1002/14651858.CD013022.pub2.

Advance care planning for adults with heart failure

Yuri Nishikawa  1 , Natsuko Hiroyama  1 , Hiroki Fukahori  1   2 , Erika Ota  3 , Atsushi Mizuno  4 , Mitsunori Miyashita  5 , Daisuke Yoneoka  6 , Joey Sw Kwong  3
Affiliations
Meta-Analysis

Advance care planning for adults with heart failure

Yuri Nishikawa et al. Cochrane Database Syst Rev. .

Abstract

Background: People with heart failure report various symptoms and show a trajectory of periodic exacerbations and recoveries, where each exacerbation event may lead to death. Current clinical practice guidelines indicate the importance of discussing future care strategies with people with heart failure. Advance care planning (ACP) is the process of discussing an individual's future care plan according to their values and preferences, and involves the person with heart failure, their family members or surrogate decision-makers, and healthcare providers. Although it is shown that ACP may improve discussion about end-of-life care and documentation of an individual's preferences, the effects of ACP for people with heart failure are uncertain.

Objectives: To assess the effects of advance care planning (ACP) in people with heart failure compared to usual care strategies that do not have any components promoting ACP.

Search methods: We searched CENTRAL, MEDLINE, Embase, CINAHL, Social Work Abstracts, and two clinical trials registers in October 2019. We checked the reference lists of included studies. There were no restrictions on language or publication status.

Selection criteria: We included randomised controlled trials (RCTs) that compared ACP with usual care in people with heart failure. Trials could have parallel group, cluster-randomised, or cross-over designs. We included interventions that implemented ACP, such as discussing and considering values, wishes, life goals, and preferences for future medical care. The study participants comprised adults (18 years of age or older) with heart failure.

Data collection and analysis: Two review authors independently extracted outcome data from the included studies, and assessed their risk of bias. We contacted trial authors when we needed to obtain missing information.

Main results: We included nine RCTs (1242 participants and 426 surrogate decision-makers) in this review. The meta-analysis included seven studies (876 participants). Participants' mean ages ranged from 62 to 82 years, and 53% to 100% of the studies' participants were men. All included studies took place in the US or the UK. Only one study reported concordance between participants' preferences and end-of-life care, and it enrolled people with heart failure or renal disease. Owing to one study with small sample size, the effects of ACP on concordance between participants' preferences and end-of-life care were uncertain (risk ratio (RR) 1.19, 95% confidence interval (CI) 0.91 to 1.55; participants = 110; studies = 1; very low-quality evidence). It corresponded to an assumed risk of 625 per 1000 participants receiving usual care and a corresponding risk of 744 per 1000 (95% CI 569 to 969) for ACP. There was no evidence of a difference in quality of life between groups (standardised mean difference (SMD) 0.06, 95% CI -0.26 to 0.38; participants = 156; studies = 3; low-quality evidence). However, one study, which was not included in the meta-analysis, showed that the quality of life score improved by 14.86 points in the ACP group compared with 11.80 points in the usual care group. Completion of documentation by medical staff regarding discussions with participants about ACP processes may have increased (RR 1.68. 95% CI 1.23 to 2.29; participants = 92; studies = 2; low-quality evidence). This corresponded to an assumed risk of 489 per 1000 participants with usual care and a corresponding risk of 822 per 1000 (95% CI 602 to 1000) for ACP. One study, which was not included in the meta-analysis, also showed that ACP helped to improve documentation of the ACP process (hazard ratio (HR) 2.87, 95% CI 1.09 to 7.59; participants = 232). Three studies reported that implementation of ACP led to an improvement of participants' depression (SMD -0.58, 95% CI -0.82 to -0.34; participants = 278; studies = 3; low-quality evidence). We were uncertain about the effects of ACP on the quality of communication when compared to the usual care group (MD -0.40, 95% CI -1.61 to 0.81; participants = 9; studies = 1; very low-quality evidence). We also noted an increase in all-cause mortality in the ACP group (RR 1.32, 95% CI 1.04 to 1.67; participants = 795; studies = 5). The studies did not report participants' satisfaction with care/treatment and caregivers' satisfaction with care/treatment.

Authors' conclusions: ACP may help to increase documentation by medical staff regarding discussions with participants about ACP processes, and may improve an individual's depression. However, the quality of the evidence about these outcomes was low. The quality of the evidence for each outcome was low to very low due to the small number of studies and participants included in this review. Additionally, the follow-up periods and types of ACP intervention were varied. Therefore, further studies are needed to explore the effects of ACP that consider these differences carefully.

PubMed Disclaimer

Conflict of interest statement

YN: none. NH: none. HF: none. EO: none. AM: this research is supported by the 'Practical Research Project for Life‐Style related Diseases including Cardiovascular Diseases and Diabetes Mellitus' from the Japan Agency for Medical Research and Development, AMED. MM: none. DY: none. JK: none.

Figures

1
1
Study flow diagram.
2
2
Risk of bias graph: review authors' judgements about each risk of bias item presented as percentages across all included studies.
3
3
Risk of bias summary: review authors' judgements about each risk of bias item for each included study.
1.1
1.1. Analysis
Comparison 1 Advance care planning (ACP) versus usual care, Outcome 1 Participants' quality of life (overall analysis: EQ‐5D, Kansas City Cardiomyopathy Questionnaire).
1.2
1.2. Analysis
Comparison 1 Advance care planning (ACP) versus usual care, Outcome 2 Participants' quality of life (subgroup analysis by follow‐up periods: EQ‐5D, Kansas City Cardiomyopathy Questionnaire).
1.3
1.3. Analysis
Comparison 1 Advance care planning (ACP) versus usual care, Outcome 3 Completion of documentation by medical staff regarding discussions with participants about ACP processes.
1.4
1.4. Analysis
Comparison 1 Advance care planning (ACP) versus usual care, Outcome 4 Participants' depression (overall analysis).
1.5
1.5. Analysis
Comparison 1 Advance care planning (ACP) versus usual care, Outcome 5 Participants' depression (subgroup analysis by follow‐up periods).
1.6
1.6. Analysis
Comparison 1 Advance care planning (ACP) versus usual care, Outcome 6 Participants' decisional conflict.
1.7
1.7. Analysis
Comparison 1 Advance care planning (ACP) versus usual care, Outcome 7 All‐cause mortality.
1.8
1.8. Analysis
Comparison 1 Advance care planning (ACP) versus usual care, Outcome 8 All‐cause mortality (sensitivity analysis excluding Kirchhoff 2010).
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References

References to studies included in this review

Briggs 2004 {published data only}
    1. Briggs LA, Kirchhoff KT, Hammes BJ, Song MK, Colvin ER. Patient‐centered advance care planning in special patient populations: a pilot study. Journal of Professional Nursing 2004;20(1):47‐58. [PUBMED: 15011193] - PubMed
    1. Song MK, Sereika SM. An evaluation of the Decisional Conflict Scale for measuring the quality of end‐of‐life decision making. Patient Education and Counseling 2006;61(3):397‐404. [PUBMED: 15970420] - PubMed
Denvir 2016 {published data only}
    1. Boyd K, Cudmore S, Highet G, Robertson S, Donald L, Weir C, et al. Future care planning in advanced heart disease. Palliative Medicine 2016;30(4):S15. [DOI: 10.1177/0269216316631462] - DOI - PMC - PubMed
    1. Denvir M, Highet G, Cudmore S, Robertson S, Weir C, Murray S, et al. Future care planning in advanced heart disease; a stepped wedge randomised, controlled trial. Palliative Medicine 2016;30(6):Np57. [DOI: 10.1177/0269216316646056] - DOI - PMC - PubMed
    1. Denvir MA, Cudmore S, Highet G, Robertson S, Donald L, Stephen J, et al. Phase 2 randomised controlled trial and feasibility study of future care planning in patients with advanced heart disease. Scientific Reports 2016;6:24619. [PUBMED: 27090299] - PMC - PubMed
    1. NCT02302014. Palliative care for patients with advanced heart disease. clinicaltrials.gov/show/nct02302014 (first received 26 November 2014).
El‐Jawahri 2016 {published data only}
    1. El‐Jawahri A, Paasche‐Orlow MK, Matlock D, Stevenson LW, Lewis EF, Stewart G, et al. Randomized, controlled trial of an advance care planning video decision support tool for patients with advanced heart failure. Circulation 2016;134(1):52‐60. [PUBMED: 27358437] - PMC - PubMed
    1. NCT01589120. Using videos to facilitate advance care planning for patients with heart failure (VIDEO‐HF). clinicaltrials.gov/ct2/show/nct01589120 (first received 1 May 2012).
Kirchhoff 2010 {published data only}
    1. Kirchhoff KT, Hammes BJ, Kehl KA, Briggs LA, Brown RL. Effect of a disease‐specific advance care planning intervention on end‐of‐life care. Journal of the American Geriatrics Society 2012;60(5):946‐50. [PUBMED: 22458336] - PMC - PubMed
    1. Kirchhoff KT, Hammes BJ, Kehl KA, Briggs LA, Brown RL. Effect of a disease‐specific planning intervention on surrogate understanding of patient goals for future medical treatment. Journal of the American Geriatrics Society 2010;58(7):1233‐40. [PUBMED: 20649686] - PMC - PubMed
    1. NCT00204802. Patient‐centered advance care planning. clinicaltrials.gov/ct2/show/nct00204802 (first received 20 September 2005).
Menon 2016 {published data only}
    1. Menon S, McCullough LB, Beyth RJ, Ford ME, Espadas D, Braun UK. Use of a values inventory as a discussion aid about end‐of‐life care: a pilot randomized controlled trial. Palliative & Supportive Care 2016;14(4):330‐40. [PUBMED: 26458331] - PubMed
    1. NCT00122135. A culturally sensitive values‐guided aid for end of life decision‐making. clinicaltrials.gov/show/nct00122135 (first received 21 July 2005).
Metzger 2016 {published data only}
    1. Metzger M, Song MK, Ward S, Chang PP, Hanson LC, Lin FC. A randomized controlled pilot trial to improve advance care planning for LVAD patients and their surrogates. Heart & Lung 2016;45(3):186‐92. [PUBMED: 26948697] - PMC - PubMed
O'Donnell 2018 {published data only}
    1. NCT02805712. Focused palliative care intervention in advanced heart failure. clinicaltrials.gov/show/nct02805712 (first received 20 June 2016).
    1. O'Donnell AE, Schaefer KG, Stevenson LW, DeVoe K, Walsh K, Mehra MR, et al. Social worker‐aided palliative care intervention in high‐risk patients with heart failure (SWAP‐HF): a pilot randomized clinical trial. JAMA Cardiology 2018;3(6):516‐9. [PUBMED: 29641819] - PMC - PubMed
    1. O'Donnell AE, Schaefer KG, Stevenson LW, Mehra MR, Desai AS. A randomized controlled trial of a social worker‐aided palliative care intervention in high risk patients with heart failure (SWAP‐HF). Journal of Cardiac Failure 2016;22(11):940. - PubMed
Rogers 2017 {published data only}
    1. Mentz RJ, Tulsky JA, Granger BB, Anstrom KJ, Adams PA, Dodson GC, et al. The palliative care in heart failure trial: rationale and design. American Heart Journal 2014;168(5):645‐51.e1. [PUBMED: 25440791] - PMC - PubMed
    1. NCT01589601. Palliative care in heart failure (PAL‐HF). clinicaltrials.gov/ct2/show/nct01589601 (first received 2 May 2012).
    1. Rogers JG, Patel CB, Mentz RJ, Granger BB, Steinhauser KE, Fiuzat M, et al. Palliative care in heart failure: the PAL‐HF randomized, controlled clinical trial. Journal of the American College of Cardiology 2017;70(3):331‐41. [PUBMED: 28705314] - PMC - PubMed
    1. Rogers JG, Patel CB, Mentz RJ, Steinhauser KE, Granger BB, Fiuza M, et al. Palliative care in heart failure: results of a randomized, controlled clinical trial. Journal of Cardiac Failure 2016;22(11):940.
Sidebottom 2015 {published and unpublished data}
    1. Sidebottom AC, Jorgenson A, Richards H, Kirven J, Sillah A. Inpatient palliative care for patients with acute heart failure: outcomes from a randomized trial. Journal of Palliative Medicine 2015;18(2):134‐42. - PubMed

References to studies excluded from this review

Allen 2018 {published data only}
    1. Allen LA, McIlvennan CK, Thompson JS, Dunlay SM, LaRue SJ, Lewis EF, et al. Effectiveness of a shared decision making intervention for patients offered a destination therapy left ventricular assist device for end‐stage heart failure: the DECIDE‐LVAD trial. Circulation 2017;136:e461. [DOI: 10.1161/CIR.0000000000000546] - DOI
    1. Allen LA, McIlvennan CK, Thompson JS, Dunlay SM, LaRue SJ, Lewis EF, et al. Effectiveness of an intervention supporting shared decision making for destination therapy left ventricular assist device: the DECIDE‐LVAD randomized clinical trial. JAMA Internal Medicine 2018;178(4):520‐9. [PUBMED: 29482225] - PMC - PubMed
    1. NCT02344576. PCORI‐1310‐06998 trial of a decision support intervention for patients and caregivers offered destination therapy heart assist device. clinicaltrials.gov/show/nct02344576 (first received 26 January 2015).
Anonymous 2007 {published data only}
    1. Anonymous. Nurses awarded for end‐of‐life care. Nursing Times 2007; Vol. 103, issue 28:4‐5.
Blue 2001 {published data only}
    1. Blue L, Lang E, McMurray JJ, Davie AP, McDonagh TA, Murdoch DR, et al. Randomised controlled trial of specialist nurse intervention in heart failure. BMJ (Clinical Research Ed.) 2001;323(7315):715‐8. [PUBMED: 11576977] - PMC - PubMed
Detering 2010 {published data only}
    1. Detering KM, Hancock AD, Reade MC, Silvester W. The impact of advance care planning on end of life care in elderly patients: randomised controlled trial. BMJ (Clinical Research Ed.) 2010;340:c1345. [PUBMED: 20332506] - PMC - PubMed
Doorenbos 2016 {published data only}
    1. Doorenbos AZ, Levy WC, Curtis JR, Dougherty CM. An intervention to enhance goals‐of‐care communication between heart failure patients and heart failure providers. Journal of Pain and Symptom Management 2016;52(3):353‐60. [PUBMED: 27401505] - PMC - PubMed
Gutheil 2005 {published data only}
    1. Gutheil IA, Heyman JC. Communication between older people and their health care agents: results of an intervention. Health & Social Work 2005;30(2):107‐16. [PUBMED: 15974371] - PubMed
Harter 2016 {published data only}
    1. Harter M, Dirmaier J, Dwinger S, Kriston L, Herbarth L, Siegmund‐Schultze E, et al. Effectiveness of telephone‐based health coaching for patients with chronic conditions: a randomised controlled trial. PloS One 2016;11(9):e0161269. [PUBMED: 27632360] - PMC - PubMed
Hjelmfors 2018 {published data only}
    1. Hjelmfors AL, Stromberg AS, Friedrichsen MF, Sandgren AS, Martensson JM, Jaarsma TJ. Using co‐design to develop communication interventions in heart failure care. European Journal of Cardiovascular Nursing 2016;15:S19.
    1. Hjelmfors L, Stromberg A, Friedrichsen M, Sandgren A, Martensson J, Jaarsma T. Using co‐design to develop an intervention to improve communication about the heart failure trajectory and end‐of‐life care. BMC Palliative Care 2018;17(1):85. [PUBMED: 29890974] - PMC - PubMed
Hua 2017 {published data only}
    1. Hua CY, Huang Y, Su YH, Bu JY, Tao HM. Collaborative care model improves self‐care ability, quality of life and cardiac function of patients with chronic heart failure. Brazilian Journal of Medical and Biological Research 2017;50(11):e6355. [PUBMED: 28953989] - PMC - PubMed
Hughes 2000 {published data only}
    1. Hughes SL, Weaver FM, Giobbie‐Hurder A, Manheim L, Henderson W, Kubal JD, et al. Effectiveness of team‐managed home‐based primary care: a randomized multicenter trial. JAMA 2000;284(22):2877‐85. [PUBMED: 11147984] - PubMed
Johnson 2010 {published data only}
    1. Johnson MJ, Booth S. Palliative and end‐of‐life care for patients with chronic heart failure and chronic lung disease. Clinical Medicine (London, England) 2010;10(3):286‐9. [PUBMED: 20726465] - PMC - PubMed
Johnson 2018 {published data only}
    1. Johnson MJ, McSkimming P, Geue C, Millerick Y, Hogg K. Patient reported outcomes, health service utilisation and place of care/death for advanced heart failure patients attending a palliative cardiology clinic or receiving usual care: a feasibility study. European Journal of Heart Failure 2017;19:558‐9. [DOI: 10.1002/ejhf.833] - DOI
    1. Johnson MJ, McSkimming P, McConnachie A, Geue C, Millerick Y, Briggs A, et al. The feasibility of a randomised controlled trial to compare the cost‐effectiveness of palliative cardiology or usual care in people with advanced heart failure: two exploratory prospective cohorts. Palliative Medicine 2018;32(6):1133‐41. [PUBMED: 29688127] - PMC - PubMed
McIlvennan 2016 {published data only}
    1. McIlvennan CK, Thompson JS, Matlock DD, Cleveland JC Jr, Dunlay SM, LaRue SJ, et al. A multicenter trial of a shared decision support intervention for patients and their caregivers offered destination therapy for advanced heart failure: DECIDE‐LVAD: rationale, design, and pilot data. Journal of Cardiovascular Nursing 2016;31(6):E8‐E20. [PUBMED: 27203272] - PubMed
    1. McIlvennan CK, Thompson JS, Matlock DD, Cleveland JC, Allen LA. An acceptability and feasibility study of decision aids for patients and their caregivers considering destination therapy left ventricular assist device. Journal of Cardiac Failure 2015;21(8):S6‐S7.
Miller 1971 {published data only}
    1. Miller MB. Decision‐making in the death process of the ill aged. Geriatrics 1971;26(5):105‐16. [PUBMED: 5556470] - PubMed
Molloy 2000 {published data only}
    1. Molloy DW, Guyatt GH, Russo R, Goeree R, O'Brien BJ, Bedard M, et al. Systematic implementation of an advance directive program in nursing homes: a randomized controlled trial. JAMA 2000;283(11):1437‐44. [PUBMED: 10732933] - PubMed
NCT01817686 {published data only}
    1. NCT01817686. Study of default options in advance directives. clinicaltrials.gov/show/nct01817686 (first received 25 March 2013).
NCT01917188 {published data only}
    1. NCT01917188. Promoting patient‐centered care through a heart failure simulation study. clinicaltrials.gov/show/nct01917188 (first received 6 August 2013).
Nenner 2012 {published data only}
    1. Nenner F. Getting better. American Journal of Hospice & Palliative Medicine 2012;29(1):80‐1. [DOI: 10.1177/1049909111408862] - DOI - PubMed
Newton 2009 {published data only}
    1. Newton J, Clark R, Ahlquist P. Evaluation of the introduction of an advanced care plan into multiple palliative care settings. International Journal of Palliative Nursing 2009;15(11):554‐61. [PUBMED: 20081730] - PubMed
Ng 2018 {published data only}
    1. Ng AY, Wong FK. Effects of a home‐based palliative heart failure program on quality of life, symptom burden, satisfaction and caregiver burden: a randomized controlled trial. Journal of Pain and Symptom Management 2018;55(1):1‐11. [PUBMED: 28801001] - PubMed
    1. Ng AY, Wong FK, Lee PH. Effects of a transitional palliative care model on patients with end‐stage heart failure: study protocol for a randomized controlled trial. Trials 2016;17:173. [PUBMED: 27037096] - PMC - PubMed
Pearlman 2005 {published data only}
    1. Pearlman RA, Starks H, Cain KC, Cole WG. Improvements in advance care planning in the Veterans Affairs System: results of a multifaceted intervention. Archives of Internal Medicine 2005;165(6):667‐74. [PUBMED: 15795344] - PubMed
Rabow 2004 {published data only}
    1. Rabow MW, Dibble SL, Pantilat SZ, McPhee SJ. The comprehensive care team: a controlled trial of outpatient palliative medicine consultation. Archives of Internal Medicine 2004;164(1):83‐91. [PUBMED: 14718327] - PubMed
    1. Rabow MW, Petersen J, Schanche K, Dibble SL, McPhee SJ. The comprehensive care team: a description of a controlled trial of care at the beginning of the end of life. Journal of Palliative Medicine 2003;6(3):489‐99. [PUBMED: 14509498] - PubMed
Radwany 2014 {published data only}
    1. Radwany SM, Hazelett SE, Allen KR, Kropp DJ, Ertle D, Albanese TH, et al. Results of the promoting effective advance care planning for elders (PEACE) randomized pilot study. Population Health Management 2014;17(2):106‐11. [PUBMED: 24156664] - PubMed
Sahlen 2016 {published data only}
    1. Brannstrom M, Boman K. A new model for integrated heart failure and palliative advanced homecare – rationale and design of a prospective randomized study. European Journal of Cardiovascular Nursing 2013;12(3):269‐75. [PUBMED: 22645405] - PubMed
    1. Brannstrom M, Boman K. Effects of person‐centred and integrated chronic heart failure and palliative home care. PREFER: a randomized controlled study. European Journal of Heart Failure 2014;16(10):1142‐51. [PUBMED: 25159126] - PubMed
    1. Sahlen KG, Boman K, Brannstrom M. A cost‐effectiveness study of person‐centered integrated heart failure and palliative home care: based on a randomized controlled trial. Palliative Medicine 2016;30(3):296‐302. [PUBMED: 26603186] - PubMed
Skorstengaard 2019 {published data only}
    1. Skorstengaard MH, Jensen AB, Andreassen P, Brogaard T, Brendstrup E, Lokke A, et al. Advance care planning and place of death, hospitalisation and actual place of death in lung, heart and cancer disease: a randomised controlled trial. BMJ Supportive & Palliative Care Published online first: 11 April 2019. [DOI: 10.1136/bmjspcare-2018-001677] - DOI - PubMed
Svendsen 2006 {published data only}
    1. Svendsen A, Arnold JM, Parker J. Caring for patients with heart failure. Canadian Nurse 2006; Vol. 102, issue 3:14‐7. - PubMed
Thoonsen 2015 {published data only}
    1. Thoonsen B, Vissers K, Verhagen S, Prins J, Bor H, Weel C, et al. Training general practitioners in early identification and anticipatory palliative care planning: a randomized controlled trial. BMC Family Practice 2015;16:126. [PUBMED: 26395257] - PMC - PubMed
UMIN000029805 {published data only}
    1. UMIN000029805. Evaluation of the effectiveness of support tool for advance care planning in chronic HEART failure. upload.umin.ac.jp/cgi‐open‐bin/ctr_e/ctr_view.cgi?recptno=R000034054 (first received 2 November 2017).
Wells 2018 {published data only}
    1. Wells R, Stockdill ML, Dionne‐Odom JN, Ejem D, Burgio KL, Durant RW, et al. Educate, Nurture, Advise, Before Life Ends Comprehensive Heartcare for Patients and Caregivers (ENABLE CHF‐PC): study protocol for a randomized controlled trial. Trials 2018;19(1):422. [PUBMED: 30081933] - PMC - PubMed

References to studies awaiting assessment

ACTRN12613001377729 {published data only}
    1. ACTRN12613001377729. Case conferences between general practitioners and specialist teams to plan end of life care of people with end stage heart failure and lung disease: pilot study. apps.who.int/trialsearch/Trial2.aspx?TrialID=ACTRN12613001377729 (first received 16 December 2013).
ACTRN12618001045202 {published data only}
    1. ACTRN12618001045202. Collaborative supportive care for patients with complex chronic disease. apps.who.int/trialsearch/Trial2.aspx?TrialID=ACTRN12618001045202 (first received 22 June 2018).
Hughes 2015 {published data only}
    1. Hughes M, Yenokyan G, Sulmasy D, Lehmann LS, Johnson J, Kub J, et al. Effect of the tailored ICD facilitated discussion on patient and family decision‐making about CIED deactivation at the end of life: a pilot randomized controlled trial. Journal of General Internal Medicine 2015;30(2):S148.
NCT00105599 {published data only}
    1. NCT00105599. Effectiveness of the FairCare system for patients with advanced illness. clinicaltrials.gov/show/nct00105599 (first received 16 March 2005).
NCT02463162 {published data only}
    1. NCT02463162. Trial of advance care planning (ACP) & goals of care designations (GCD) discussions. clinicaltrials.gov/show/nct02463162 (first received 4 June 2015).
NCT03128060 {published data only}
    1. NCT03128060. Expanding access to home‐based palliative care. clinicaltrials.gov/ct2/show/nct03128060 (first received 25 April 2017).
NCT03539510 {published data only}
    1. NCT03539510. Effectiveness of the HF‐ACP website study. clinicaltrials.gov/ct2/show/nct03539510 (first received 28 May 2018).
NCT03649191 {published data only}
    1. NCT03649191. BABEL advance care planning in long‐term care. clinicaltrials.gov/ct2/show/NCT03649191 (first received 28 August 2018).
O'Riordan 2014 {published data only}
    1. O'Riordan D, Rathfon M, Dracup K, Rabow M, Pantilat S, Marco T. A randomized clinical trial of palliative care for people with heart failure: baseline characteristics. Journal of Pain and Symptom Management 2014;47:496.
Skorstengaard 2017 {published data only}
    1. NCT01944813. Advance care planning: a way to improve end‐of‐life care. clinicaltrials.gov/show/nct01944813 (first received 18 September 2013).
    1. Skorstengaard MH, Neergaard MA, Andreassen P, Brogaard T, Bendstrup E, Lokke A, et al. Preferred place of care and death in terminally ill patients with lung and heart disease compared to cancer patients. Journal of Palliative Medicine 2017;20(11):1217‐24. [PUBMED: 28574737] - PubMed

References to ongoing studies

ACTRN12614000590662 {published data only}
    1. ACTRN12614000590662. A randomised control trial for advance care planning and symptom management for patients identified in the emergency department and followed up at home. apps.who.int/trialsearch/Trial2.aspx?TrialID=ACTRN12614000590662 (first received 4 June 2014).
ACTRN12617001040358 {published data only}
    1. ACTRN12617001040358. FINnish PALliative care education trial (FINPAL) to improve nursing home residents' quality of life. apps.who.int/trialsearch/Trial2.aspx?TrialID=ACTRN12617001040358 (first received 17 July 2017).
Ejem 2019 {published data only}
    1. Ejem DB, Barrett N, Rhodes RL, Olsen M, Bakitas M, Durant R, et al. Reducing disparities in the quality of palliative care for older African Americans through improved advance care planning: study design and protocol. Journal of Palliative Medicine 2019;22(S1):90‐100. [PUBMED: 31486728] - PubMed
Graney 2019 {published data only}
    1. Graney BA, Au DH, Baron AE, Cheng A, Combs SA, Glorioso TJ, et al. Advancing Symptom Alleviation with Palliative Treatment (ADAPT) trial to improve quality of life: a study protocol for a randomized clinical trial. Trials 2019;20(1):355. [PUBMED: 31196156] - PMC - PubMed
    1. NCT02713347. Advancing symptom alleviation with palliative treatment. clinicaltrials.gov/ct2/show/nct02713347 (first received 18 March 2016).
Malhotra 2016 {published data only}
    1. Malhotra C, Sim DK, Jaufeerally F, Vikas NN, Sim GW, Tan BC, et al. Impact of advance care planning on the care of patients with heart failure: study protocol for a randomized controlled trial. Trials 2016;17(1):285. [PUBMED: 27287330] - PMC - PubMed
    1. NCT02299180. Impact of advance care planning on care for patients with advanced heart failure. clinicaltrials.gov/ct2/show/nct02299180 (first received 24 November 2014).
NCT00489021 {published data only}
    1. NCT00489021. Feasibility and outcomes of older patients hospitalization. clinicaltrials.gov/show/nct00489021 (first received 21 June 2007).
NCT02429479 {published data only}
    1. NCT02429479. Preparing family caregivers to make medical decisions for their loved ones. clinicaltrials.gov/show/nct02429479 (first received 29 April 2015).
NCT02612688 {published data only}
    1. NCT02612688. Pragmatic trial of video education in nursing homes. clinicaltrials.gov/show/nct02612688 (first received 24 November 2015).
NCT03170466 {published data only}
    1. NCT03170466. Primary palliative care in heart failure: a pilot trial. clinicaltrials.gov/ct2/show/nct03170466 (first received 31 May 2017).
NCT03516994 {published data only}
    1. NCT03516994. Reducing disparities in the quality of advance care planning for older adults. clinicaltrials.gov/show/nct03516994 (first received 7 May 2018).

Additional references

Allen 2012
    1. Allen LA, Stevenson LW, Grady KL, Goldstein NE, Matlock DD, Arnold RM, et al. Decision making in advanced heart failure: a scientific statement from the American Heart Association. Circulation 2012;125(15):1928‐52. [PUBMED: 22392529] - PMC - PubMed
Benjamin 2017
    1. Benjamin EJ, Blaha MJ, Chiuve SE, Cushman M, Das SR, Deo R, et al. Heart disease and stroke statistics. 2017 update: a report from the American Heart Association. Circulation 2017;135(10):e146‐603. [PUBMED: 28122885] - PMC - PubMed
Browne 2014
    1. Browne S, Macdonald S, May CR, Macleod U, Mair FS. Patient, carer and professional perspectives on barriers and facilitators to quality care in advanced heart failure. PloS One 2014;9(3):e93288. [PUBMED: 24676421] - PMC - PubMed
Butler 2015
    1. Butler J, Binney Z, Kalogeropoulos A, Owen M, Clevenger C, Gunter D, et al. Advance directives among hospitalized patients with heart failure. JACC. Heart Failure 2015;3(2):112‐21. [PUBMED: 25543976] - PubMed
Cohen 1988
    1. Cohen J. Statistical Power Analysis for the Behavioral Sciences. 2nd Edition. Mahwah (NJ): Lawrence Erlbaum Associates, 1988.
De Vleminck 2014
    1. Vleminck A, Pardon K, Beernaert K, Deschepper R, Houttekier D, Audenhove C, et al. Barriers to advance care planning in cancer, heart failure and dementia patients: a focus group study on general practitioners' views and experiences. PloS One 2014;9(1):e84905. [PUBMED: 24465450] - PMC - PubMed
Falk 2013
    1. Falk H, Ekman I, Anderson R, Fu M, Granger B. Older patients' experiences of heart failure‐an integrative literature review. Journal of Nursing Scholarship 2013;45(3):247‐55. [PUBMED: 23617442] - PubMed
Fine 2010
    1. Fine E, Reid MC, Shengelia R, Adelman RD. Directly observed patient‐physician discussions in palliative and end‐of‐life care: a systematic review of the literature. Journal of Palliative Medicine 2010;13(5):595‐603. [PUBMED: 20491550] - PMC - PubMed
GBD 2016
    1. GBD 2015 Disease and Injury Incidence and Prevalence Collaborators. Global, regional, and national incidence, prevalence, and years lived with disability for 310 diseases and injuries, 1990‐2015: a systematic analysis for the Global Burden of Disease Study 2015. Lancet 2016;388(10053):1545‐602. - PMC - PubMed
Gottdiener 2000
    1. Gottdiener JS, Arnold AM, Aurigemma GP, Polak JF, Tracy RP, Kitzman DW, et al. Predictors of congestive heart failure in the elderly: the Cardiovascular Health Study. Journal of the American College of Cardiology 2000;35(6):1628‐37. [PUBMED: 10807470] - PubMed
GRADEpro GDT 2015 [Computer program]
    1. McMaster University (developed by Evidence Prime). GRADEpro GDT. Hamilton (ON): McMaster University (developed by Evidence Prime), 2015.
Hayhoe 2011
    1. Hayhoe B, Howe A. Advance care planning under the Mental Capacity Act 2005 in primary care. British Journal of General Practice 2011;61(589):e537‐41. [PUBMED: 21801576] - PMC - PubMed
Higgins 2011
    1. Higgins JP, Green S, editor(s). Cochrane Handbook for Systematic Reviews of Interventions Version 5.1 (updated March 2011). The Cochrane Collaboration, 2011. Available from handbook.cochrane.org.
Hjelmfors 2014
    1. Hjelmfors L, Stromberg A, Friedrichsen M, Martensson J, Jaarsma T. Communicating prognosis and end‐of‐life care to heart failure patients: a survey of heart failure nurses' perspectives. European Journal of Cardiovascular Nursing 2014;13(2):152‐61. [PUBMED: 24480779] - PubMed
Hong 2018
    1. Hong M, Yi EH, Johnson KJ, Adamek ME. Facilitators and barriers for advance care planning among ethnic and racial minorities in the U.S.: a systematic review of the current literature. Journal of Immigrant and Minority Health 2018;20(5):1277‐87. [PUBMED: 29124502] - PubMed
Houben 2014
    1. Houben CH, Spruit MA, Groenen MT, Wouters EF, Janssen DJ. Efficacy of advance care planning: a systematic review and meta‐analysis. Journal of the American Medical Directors Association 2014;15(7):477‐89. [PUBMED: 24598477] - PubMed
Johnson 2016
    1. Johnson S, Butow P, Kerridge I, Tattersall M. Advance care planning for cancer patients: a systematic review of perceptions and experiences of patients, families, and healthcare providers. Psycho‐oncology 2016;25(4):362‐86. [PUBMED: 26387480] - PubMed
Kernick 2018
    1. Kernick LA, Hogg KJ, Millerick Y, Murtagh FE, Djahit A, Johnson M. Does advance care planning in addition to usual care reduce hospitalisation for patients with advanced heart failure: a systematic review and narrative synthesis. Palliative Medicine 2018;32(10):1539‐51. [PUBMED: 30234421] - PubMed
Lefebvre 2011
    1. Lefebvre C, Manheimer E, Glanville J. Chapter 6: Searching for studies. In: Higgins JP, Green S, editor(s). Cochrane Handbook for Systematic Reviews of Interventions Version 5.1.0 (updated March 2011). The Cochrane Collaboration, 2011. Available from www.handbook.cochrane.org.
Liberati 2009
    1. Liberati A, Altman DG, Tetzlaff J, Mulrow C, Gotzsche PC, Ioannidis JP, et al. The PRISMA statement for reporting systematic reviews and meta‐analyses of studies that evaluate health care interventions: explanation and elaboration. PLoS Medicine 2009;6(7):e1000100. - PMC - PubMed
Lim 2016
    1. Lim CE, Ng RW, Cheng NC, Cigolini M, Kwok C, Brennan F. Advance care planning for haemodialysis patients. Cochrane Database of Systematic Reviews 2016, Issue 7. [DOI: 10.1002/14651858.CD010737.pub2; PUBMED: 27457661] - DOI - PMC - PubMed
Lorenz 2008
    1. Lorenz KA, Lynn J, Dy SM, Shugarman LR, Wilkinson A, Mularski RA, et al. Evidence for improving palliative care at the end of life: a systematic review. Annals of Internal Medicine 2008;148(2):147‐59. [PUBMED: 18195339] - PubMed
Lynn 2001
    1. Lynn J. Perspectives on care at the close of life. Serving patients who may die soon and their families: the role of hospice and other services. JAMA 2001;285(7):925‐32. [PUBMED: 11180736] - PubMed
Martin 2016
    1. Martin RS, Hayes B, Gregorevic K, Lim WK. The effects of advance care planning interventions on nursing home residents: a systematic review. Journal of the American Medical Directors Association 2016;17(4):284‐93. [PUBMED: 26861748] - PubMed
Miller 2019
    1. Miller H, Tan J, Clayton JM, Meller A, Hermiz O, Zwar N, et al. Patient experiences of nurse‐facilitated advance care planning in a general practice setting: a qualitative study. BMC Palliative Care 2019;18(1):25. [PUBMED: 30841925] - PMC - PubMed
Mullick 2013
    1. Mullick A, Martin J, Sallnow L. An introduction to advance care planning in practice. BMJ (Clinical Research Ed.) 2013;347:f6064. [PUBMED: 24144870] - PubMed
NCPC 2007
    1. National Council for Palliative Care. Advance care planning: a guide for health and social care staff. February 2007. www.ncpc.org.uk/publication/advance‐care‐planning‐guide‐health‐and‐socia... (accessed 30 August 2017).
Ohr 2017
    1. Ohr S, Jeong S, Saul P. Cultural and religious beliefs and values, and their impact on preferences for end‐of‐life care among four ethnic groups of community‐dwelling older persons. Journal of Clinical Nursing 2017;26(11‐12):1681‐9. [PUBMED: 27603557] - PubMed
Ponikowski 2016
    1. Ponikowski P, Voors AA, Anker SD, Bueno H, Cleland JG, Coats AJ, et al. 2016 ESC guidelines for the diagnosis and treatment of acute and chronic heart failure: The Task Force for the diagnosis and treatment of acute and chronic heart failure of the European Society of Cardiology (ESC). Developed with the special contribution of the Heart Failure Association (HFA) of the ESC. European Journal of Heart Failure 2016;18(8):891‐975. [PUBMED: 27207191] - PubMed
Prendergast 2001
    1. Prendergast TJ. Advance care planning: pitfalls, progress, promise. Critical Care Medicine 2001;29(2 Suppl):N34‐9. [PUBMED: 11228571] - PubMed
Redfield 2003
    1. Redfield MM, Jacobsen SJ, Burnett JC Jr, Mahoney DW, Bailey KR, Rodeheffer RJ. Burden of systolic and diastolic ventricular dysfunction in the community: appreciating the scope of the heart failure epidemic. JAMA 2003;289(2):194‐202. [PUBMED: 12517230] - PubMed
Review Manager 2014 [Computer program]
    1. Nordic Cochrane Centre, The Cochrane Collaboration. Review Manager 5 (RevMan 5). Version 5.3. Copenhagen: Nordic Cochrane Centre, The Cochrane Collaboration, 2014.
Rhee 2013
    1. Rhee JJ, Zwar NA, Kemp LA. Advance care planning and interpersonal relationships: a two‐way street. Family Practice 2013;30(2):219‐26. [PUBMED: 23028000] - PubMed
Rietjens 2017
    1. Rietjens JA, Sudore RL, Connolly M, Delden JJ, Drickamer MA, Droger M, et al. Definition and recommendations for advance care planning: an international consensus supported by the European Association for Palliative Care. Lancet Oncology 2017;18(9):e543‐51. [PUBMED: 28884703] - PubMed
Stevenson 2015
    1. Stevenson LW, O'Donnell A. Advanced care planning: care to plan in advance. JACC. Heart Failure 2015; Vol. 3, issue 2:122‐6. [PUBMED: 25543973] - PubMed
Sudore 2010
    1. Sudore RL, Fried TR. Redefining the "planning" in advance care planning: preparing for end‐of‐life decision making. Annals of Internal Medicine 2010;153(4):256‐61. [PUBMED: 20713793] - PMC - PubMed
Sudore 2017
    1. Sudore RL, Lum HD, You JJ, Hanson LC, Meier DE, Pantilat SZ, et al. Defining advance care planning for adults: a consensus definition from a multidisciplinary Delphi panel. Journal of Pain and Symptom Management 2017;53(5):821‐32. [PUBMED: 28062339] - PMC - PubMed
Virdun 2015
    1. Virdun C, Luckett T, Davidson PM, Phillips J. Dying in the hospital setting: a systematic review of quantitative studies identifying the elements of end‐of‐life care that patients and their families rank as being most important. Palliative Medicine 2015;29(9):774‐96. [PUBMED: 25921707] - PMC - PubMed
Weathers 2016
    1. Weathers E, O'Caoimh R, Cornally N, Fitzgerald C, Kearns T, Coffey A, et al. Advance care planning: a systematic review of randomised controlled trials conducted with older adults. Maturitas 2016;91:101‐9. [PUBMED: 27451328] - PubMed
Wright 2008
    1. Wright AA, Zhang B, Ray A, Mack JW, Trice E, Balboni T, et al. Associations between end‐of‐life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA 2008;300(14):1665‐73. [PUBMED: 18840840] - PMC - PubMed
Yancy 2013
    1. Yancy CW, Jessup M, Bozkurt B, Butler J, Casey DE Jr, Drazner MH, et al. 2013 ACCF/AHA guideline for the management of heart failure: a report of the American College of Cardiology Foundation/American Heart Association Task Force on practice guidelines. Circulation 2013;128(16):e240‐327. [PUBMED: 23741058] - PubMed
Zwakman 2018
    1. Zwakman M, Jabbarian LJ, Delden J, Heide A, Korfage IJ, Pollock K, et al. Advance care planning: a systematic review about experiences of patients with a life‐threatening or life‐limiting illness. Palliative Medicine 2018;32(8):1305‐21. [PUBMED: 29956558] - PMC - PubMed

References to other published versions of this review

Nishikawa 2018
    1. Nishikawa Y, Fukahori H, Ota E, Mizuno A, Hiroyama N, Miyashita M, Yoneoka D, Kwong JS. Advance care planning for heart failure. Cochrane Database of Systematic Reviews 2018, Issue 5. [DOI: 10.1002/14651858.CD013022] - DOI - PMC - PubMed

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