Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2022 Jul 8;7(7):CD013116.
doi: 10.1002/14651858.CD013116.pub2.

Interventions for interpersonal communication about end of life care between health practitioners and affected people

Rebecca E Ryan  1 , Michael Connolly  2 , Natalie K Bradford  3 , Simon Henderson  4 , Anthony Herbert  5   6 , Lina Schonfeld  1 , Jeanine Young  7 , Josephine I Bothroyd  8 , Amanda Henderson  7
Affiliations

Interventions for interpersonal communication about end of life care between health practitioners and affected people

Rebecca E Ryan et al. Cochrane Database Syst Rev. .

Abstract

Background: Communication about end of life (EoL) and EoL care is critically important for providing quality care as people approach death. Such communication is often complex and involves many people (patients, family members, carers, health professionals). How best to communicate with people in the period approaching death is not known, but is an important question for quality of care at EoL worldwide. This review fills a gap in the evidence on interpersonal communication (between people and health professionals) in the last year of life, focusing on interventions to improve interpersonal communication and patient, family member and carer outcomes.

Objectives: To assess the effects of interventions designed to improve verbal interpersonal communication about EoL care between health practitioners and people affected by EoL.

Search methods: We searched CENTRAL, MEDLINE, Embase, PsycINFO, and CINAHL from inception to July 2018, without language or date restrictions. We contacted authors of included studies and experts and searched reference lists to identify relevant papers. We searched grey literature sources, conference proceedings, and clinical trials registries in September 2019. Database searches were re-run in June 2021 and potentially relevant studies listed as awaiting classification or ongoing.

Selection criteria: This review assessed the effects of interventions, evaluated in randomised and quasi-randomised trials, intended to enhance interpersonal communication about EoL care between patients expected to die within 12 months, their family members and carers, and health practitioners involved in their care. Patients of any age from birth, in any setting or care context (e.g. acute catastrophic injury, chronic illness), and all health professionals involved in their care were eligible. All communication interventions were eligible, as long as they included interpersonal interaction(s) between patients and family members or carers and health professionals. Interventions could be simple or complex, with one or more communication aims (e.g. to inform, skill, engage, support). Effects were sought on outcomes for patients, family and carers, health professionals and health systems, including adverse (unintended) effects. To ensure this review's focus was maintained on interpersonal communication in the last 12 months of life, we excluded studies that addressed specific decisions, shared or otherwise, and the tools involved in such decision-making. We also excluded studies focused on advance care planning (ACP) reporting ACP uptake or completion as the primary outcome. Finally, we excluded studies of communication skills training for health professionals unless patient outcomes were reported as primary outcomes.

Data collection and analysis: Standard Cochrane methods were used, including dual review author study selection, data extraction and quality assessment of the included studies.

Main results: Eight trials were included. All assessed intervention effects compared with usual care. Certainty of the evidence was low or very low. All outcomes were downgraded for indirectness based on the review's purpose, and many were downgraded for imprecision and/or inconsistency. Certainty was not commonly downgraded for methodological limitations. A summary of the review's findings is as follows. Knowledge and understanding (four studies, low-certainty evidence; one study without usable data): interventions to improve communication (e.g. question prompt list, with or without patient and physician training) may have little or no effect on knowledge of illness and prognosis, or information needs and preferences, although studies were small and measures used varied across trials. Evaluation of the communication (six studies measuring several constructs (communication quality, patient-centredness, involvement preferences, doctor-patient relationship, satisfaction with consultation), most low-certainty evidence): across constructs there may be minimal or no effects of interventions to improve EoL communication, and there is uncertainty about effects of interventions such as a patient-specific feedback sheet on quality of communication. Discussions of EoL or EoL care (six studies measuring selected outcomes, low- or very low-certainty evidence): a family conference intervention may increase duration of EoL discussions in an intensive care unit (ICU) setting, while use of a structured serious illness conversation guide may lead to earlier discussions of EoL and EoL care (each assessed by one study). We are uncertain about effects on occurrence of discussions and question asking in consultations, and there may be little or no effect on content of communication in consultations. Adverse outcomes or unintended effects (limited evidence): there is insufficient evidence to determine whether there are adverse outcomes associated with communication interventions (e.g. question prompt list, family conference, structured discussions) for EoL and EoL care. Patient and/or carer anxiety was reported by three studies, but judged as confounded. No other unintended consequences, or worsening of desired outcomes, were reported. Patient/carer quality of life (four studies, low-certainty evidence; two without useable data): interventions to improve communication may have little or no effect on quality of life. Health practitioner outcomes (three studies, low-certainty evidence; two without usable data): interventions to improve communication may have little or no effect on health practitioner outcomes (satisfaction with communication during consultation; one study); effects on other outcomes (knowledge, preparedness to communicate) are unknown. Health systems impacts: communication interventions (e.g. structured EoL conversations) may have little or no effect on carer or clinician ratings of quality of EoL care (satisfaction with care, symptom management, comfort assessment, quality of care) (three studies, low-certainty evidence), or on patients' self-rated care and illness, or numbers of care goals met (one study, low-certainty evidence). Communication interventions (e.g. question prompt list alone or with nurse-led communication skills training) may slightly increase mean consultation length (two studies), but other health service impacts (e.g. hospital admissions) are unclear.

Authors' conclusions: Findings of this review are inconclusive for practice. Future research might contribute meaningfully by seeking to fill gaps for populations not yet studied in trials; and to develop responsive outcome measures with which to better assess the effects of communication on the range of people involved in EoL communication episodes. Mixed methods and/or qualitative research may contribute usefully to better understand the complex interplay between different parties involved in communication, and to inform development of more effective interventions and appropriate outcome measures. Co-design of such interventions and outcomes, involving the full range of people affected by EoL communication and care, should be a key underpinning principle for future research in this area.

Trial registration: ClinicalTrials.gov NCT00331877 NCT00325611 NCT01245621 NCT01990742 NCT02261935 NCT02606149 NCT02723799 NCT02730858 NCT02944344 NCT03099746 NCT03548142 NCT03626402 NCT03770481.

PubMed Disclaimer

Conflict of interest statement

  1. Rebecca Ryan: completed this work as part of her role as Joint Co‐ordinating Editor with the Cochrane Consumers and Communication Group. Her position is funded by a Cochrane Infrastructure Grant provided by the National Health and Medical Research Council (NHMRC).

  2. Michael Connolly: completed this work as part of his Evidence Synthesis Ireland Fellowship.

  3. Natalie Bradford: none to declare.

  4. Simon Henderson: none to declare.

  5. Anthony Herbert: received funding from Australia Research Council (2018 to 2020) and Gilead Sciences (2016).

  6. Lina Schonfeld: none to declare.

  7. Jeanine Young: none to declare.

  8. Josephine Bothroyd: none to declare.

  9. Amanda Henderson: none to declare.

Figures

1
1
Study flow diagram.
2
2
Risk of bias summary: review authors' judgements about each risk of bias item for each included study.
1.1
1.1. Analysis
Comparison 1: Intervention versus usual care, Outcome 1: Doctor‐patient relationship
1.2
1.2. Analysis
Comparison 1: Intervention versus usual care, Outcome 2: Discussion of EoL care planning
1.3
1.3. Analysis
Comparison 1: Intervention versus usual care, Outcome 3: Patient questions in consultation
1.4
1.4. Analysis
Comparison 1: Intervention versus usual care, Outcome 4: Family‐rated symptom management (SM‐EOLD)
1.5
1.5. Analysis
Comparison 1: Intervention versus usual care, Outcome 5: Family‐rated satisfaction with care at EoL (SWC‐EOLD)
See this image and copyright information in PMC

Update of

  • doi: 10.1002/14651858.CD013116

Similar articles

See all similar articles

Cited by

See all "Cited by" articles

References

References to studies included in this review

Agar 2017 {published and unpublished data}
    1. ACTRN12612001164886. Improving dementia end of life care at local aged care facilities [Cluster randomised controlled trial of facilitated case conferencing versus usual care for improving end of life outcomes in aged care residents with advanced dementia and their families]. www.anzctr.org.au/Trial/Registration/TrialReview.aspx?ACTRN=12612001164886 (first received 2 November 2012). [ACTRN12612001164886]
    1. Agar M, Beattie E, Luckett T, Phillips J, Luscombe G, Goodall S, et al. Pragmatic cluster randomised controlled trial of facilitated family case conferencing compared with usual care for improving end of life care and outcomes in nursing home residents with advanced dementia and their families: the IDEAL study protocol. BMC Palliative Care 2015;14(1):63. [DOI: 10.1186/s12904-015-0061-8] - DOI - PMC - PubMed
    1. Agar M, Chenoweth L, Mitchell G, Goodall S, Beattie E, Luscombe G, et al. Cluster randomised controlled trial of facilitated case conferencing for aged care residents with advanced dementia. Palliative Medicine 2016;30(6):NP72-NP73. [DOI: 10.1177/0269216316646056] - DOI - PMC - PubMed
    1. Agar M, Luckett T, Luscombe G, Phillips J, Beattie E, Pond D, et al. Effects of facilitated family case conferencing for advanced dementia: a cluster randomised clinical trial. PLOS One 2017;12(8):e0181020. - PMC - PubMed
    1. Luckett T, Chenoweth L, Phillips J, Brooks D, Cook J, Mitchell G, et al. A facilitated approach to family case conferencing for people with advanced dementia living in nursing homes: perceptions of palliative care planning coordinators and other health professionals in the IDEAL study. International Psychogeriatrics 2017;29:1713-22. - PubMed
Au 2012 {published data only}
    1. Au DH, Udris EM, Engelberg RA, Diehr PH, Bryson CL, Reinke LF, et al. A randomized trial to improve communication about end-of-life care among patients with COPD. Chest 2012;141(3):726-35. - PMC - PubMed
    1. NCT00106080. Improving the quality of end-of-life communication for patients with chronic obstructive pulmonary disease (COPD). clinicaltrials.gov/ct2/show/record/NCT00106080 (first received 21 March 2005). [NCT00106080]
Bernacki 2019 {published and unpublished data}
    1. Bernacki R, Hutchings M, Vick J, Smith G, Paladino J, Lipsitz S, et al. Development of the Serious Illness Care Program: a randomised controlled trial of a palliative care communication intervention. BMJ Open 2015;5(10):e009032. - PMC - PubMed
    1. Bernacki R, Paladino J, Lamas D, Hutchings M, Lakin J, Neville BA, et al. Delivering more, earlier, and better goals-of-care conversations to seriously ill oncology patients. Journal of Clinical Oncology 2015;33(29 Suppl (October 10, 2015)):39.
    1. Bernacki R, Paladino J, Neville BA, Hutchings M, Kavanagh J, Geerse OP, et al. Effect of the Serious Illness Care Program in outpatient oncology: a cluster randomized clinical trial. JAMA Internal Medicine 2019;179(6):751-9. [DOI: 10.1001/jamainternmed.2019.0077] - DOI - PMC - PubMed
    1. NCT01786811. Serious Illness Communication Project. clinicaltrials.gov/ct2/show/NCT01786811 (first received 8 February 2013). [NCT01786811]
    1. Paladino J, Bernacki R, Neville BA, Kavanagh J, Miranda SP, Palmor M, et al. Evaluating an intervention to improve communication between oncology clinicians and patients with life-limiting cancer: a cluster randomized clinical trial of the Serious Illness Care Program. JAMA Oncology 2019;5(6):801-9. [DOI: 10.1001/jamaoncol.2019.0292] - DOI - PubMed
Clayton 2007 {published and unpublished data}
    1. Clayton J, Butow P, Tattersall M, Chye R, Noel M, Davis JM, et al. Asking questions can help: development and preliminary evaluation of a question prompt list for palliative care patients. British Journal of Cancer 2003;89(89):2069-77. [DOI: 10.1038/sj.bjc.6601380] - DOI - PMC - PubMed
    1. Clayton J. Enhancing Doctor-Patient Communication in Palliative Medicine [Doctoral dissertation]. Sydney: The University of Sydney, 2005.
    1. Clayton JM, Butow PN, Tattersall MH, Devine RJ, Simpson JM, Aggarwal G, et al. Randomized controlled trial of a prompt list to help advanced cancer patients and their caregivers to ask questions about prognosis and end-of-life care. Journal of Clinical Oncology 2007;25(6):715-23. - PubMed
    1. Clayton JM, Butow PN, Tattersall MHN. The needs of terminally ill cancer patients versus those of their caregivers for information regarding prognosis and end-of-life issues. Cancer 2005;103:1957-64. - PubMed
Epstein 2017 {published and unpublished data}
    1. Duberstein PR, Kravitz RL, Fenton JJ, Xing G, Tancredi DJ, Hoerger M, et al. Physician and patient characteristics associated with more intensive end-of-life care. Journal of Pain and Symptom Management 2019;58(2):208-215.e1. - PMC - PubMed
    1. Duberstein PR, Maciejewski PK, Epstein RM, Fenton JJ, Chapman B, Norton SA, et al. Effects of the values and options in cancer care communication intervention on personal caregiver experiences of cancer care and bereavement outcomes. Journal of Palliative Medicine 2019;22(11):1394-400. - PMC - PubMed
    1. Epstein RM, Duberstein PR, Fenton JJ, Fiscella K, Hoerger M, Tancredi D J, et al. Effect of a patient-centered communication intervention on oncologist-patient communication, quality of life, and health care utilization in advanced cancer: the VOICE randomized clinical trial. JAMA Oncology 2017;3(1):92-100. - PMC - PubMed
    1. Fenton JJ, Kravitz RL, Duberstein P, Tancredi DJ, Xing G, Epstein RM. A cluster randomized trial of a patient-centered communication intervention in advanced cancer: the Values and Options In Cancer Care (VOICE) study. Journal of Clinical Oncology 2016;34(26 Suppl (October 9, 2016)):2. [DOI: 10.1200/jco.2016.34.26_suppl.2] [NCT01485627] - DOI
    1. Hoerger M, Epstein RM, Winters PC, Fiscella K, Duberstein PR, Gramling R, et al. Values and options in cancer care (VOICE): study design and rationale for a patient-centered communication and decision-making intervention for physicians, patients with advanced cancer, and their caregivers. BMC Cancer 2013;13:188. [DOI: 10.1186/1471-2407-13-188] - DOI - PMC - PubMed
Lautrette 2007 {published data only}
    1. Jones T. A proactive communication strategy reduced post-traumatic stress disorder symptoms in relatives of patients dying in the ICU. Evidence-Based Nursing 2007;10:85. - PubMed
    1. Lautrette A, Darmon M, Megarbane B, Joly LM, Chevret S, Adrie C, et al. A communication strategy and brochure for relatives of patients dying in the ICU. New England Journal of Medicine 2007;356(5):469-78. [DOI: 10.1056/NEJMoa063446] - DOI - PubMed
    1. NCT00331877. A communication strategy for families of patients dying in the ICU. clinicaltrials.gov/ct2/show/record/NCT00331877?term=NCT00331877&draw... (first received 31 May 2006). [NCT00331877]
Reinhardt 2014 {published and unpublished data}
    1. Reinhardt JP, Chichin E, Posner L, Kassabian S. Vital conversations with family in the nursing home: preparation for end-stage dementia care. Journal of Social Work in End-of-life & Palliative Care 2014;10(2):112-26. - PubMed
Walczak 2017 {published and unpublished data}
    1. ACTRN12610000724077. Conversations with your doctor: making the most of medical consultations for patients with advanced incurable cancer and their carers [Improving communication and quality of life (QOL) at the end of life: a randomised controlled trial of a multifocal communication intervention for patients with advanced incurable cancer, carers and doctors]. www.anzctr.org.au/Trial/Registration/TrialReview.aspx?ACTRN=12610000724077 (first received 31 August 2010). [ACTRN12610000724077]
    1. Brandes K, Butow PN, Tattersall MH, Clayton JM, Davidson PM, Young J, et al. Advanced cancer patients’ and caregivers’ use of a question prompt list. Patient Education and Counseling 2014;97(1):30-7. - PubMed
    1. Walczak A, Butow P, Tattersall M, Clayton J, Davidson P, Young J, et al. Communication at the end-of-life: an RCT of a nurse-delivered intervention incorporating a QPL for advanced cancer patients and caregivers. Psycho-oncology 2013;22(Suppl 3):4-5.
    1. Walczak A, Butow P, Tattersall M, Clayton J, Davidson P, Young J, et al. Discussing life expectancy and end-of-life care: preliminary results from a RCT/pre-post trial of a communication training and support intervention for patients, carers and oncologists. Psycho-oncology 2011;20(Suppl 2):119-20.
    1. Walczak A, Butow PN, Clayton JM, Tattersall MH, Davidson PM, Young J, et al. Discussing prognosis and end-of-life care in the final year of life: a randomised controlled trial of a nurse-led communication support programme for patients and caregivers. BMJ Open 2014;4(6):e005745. - PMC - PubMed

References to studies excluded from this review

Aaronson 1999 {published data only}
    1. Aaronson NK. Assessing quality of life in clinical practice in oncology. European Journal of Cancer 1999;35:222 (Abstract No 870).
Aasmul 2018 {published data only}
    1. Aasmul I, Husebo BS, Flo E. Description of an advance care planning intervention in nursing homes: outcomes of the process evaluation. BMC Geriatrics 2018;18:26. [DOI: ] - PMC - PubMed
Abernethy 2006 {published data only}
    1. Abernethy AP, Currow DC, Hunt R, Williams H, Roder-Allen G, Rowett D, et al. A pragmatic 2 x 2 x 2 factorial cluster randomized controlled trial of educational outreach visiting and case conferencing in palliative care-methodology of the Palliative Care Trial [ISRCTN 81117481]. Contemporary Clinical Trials 2006;27(1):83-100. [PMID: ] - PubMed
Abernethy 2013 {published data only}
    1. Abernethy AP, Currow DC, Shelby-James T, Rowett D, May F, Samsa GP, et al. Delivery strategies to optimize resource utilization and performance status for patients with advanced life-limiting illness: results from the ‘‘Palliative Care Trial’’ [ISRCTN 81117481]. Journal of Pain and Symptom Management 2013;45:488e505. - PubMed
Abrahm 2016 {published data only}
    1. Abrahm J, Blonquist T, Catalano P, Lobach D, Braun I, Halpenny B, et al. Point of care clinical decision support for cancer symptom management: results of a group randomized trial. Supportive Care in Cancer 2016;24(1 Supplement 1):S45. [DOI: ]
ACTRN12614000150640 {published data only}
    1. ACTRN12614000150640. Acceptance and valued-living in palliative care patients, caregivers and significant others. anzctr.org.au/ACTRN12614000150640.aspx (first received 7 February 2014). [ACTRN12614000150640]
Agar 2016a {published data only}
    1. Agar M, Chenoweth L, Mitchell G, Goodall S, Beattie E, Luscombe G, et al. Implementing facilitated case conferencing for aged care residents with advanced dementia - development of a palliative care planning coordinator role. Palliative Medicine 2016;30(6):NP228-NP229. [DOI: ]
Agren 2019 {published data only}
    1. Agren S, Eriksson A, Fredrikson M, Hollman-Frisman G, Orwelius L. The health promoting conversations intervention for families with a critically ill relative: a pilot study. Intensive & Critical Care Nursing 2019;50:103-10. - PubMed
Ahrens 2003 {published data only}
    1. Ahrens T, Yancey V, Kollef M. Improving family communications at the end of life: implications for length of stay in the intensive care unit and resource use. American Journal of Critical Care 2003;12:317-23; discussion 324. - PubMed
Aikman 1999 {published data only}
    1. Aikman PJ, Thiel EC, Martin DK, Singer PA. Proxy, health, and personal care preferences: implications for end-of-life care. Cambridge Quarterly of Healthcare Ethics 1999;8(2):200-10. - PubMed
Akard 2020 {published data only}
    1. Akard T, Gerhardt C, Ridner S, Gilmer MJ. Parent-child communication outcomes of a RCT testing a legacy intervention for children with advanced cancer (GP703). Journal of Pain and Symptom Management 2020;60(1):247-8.
Akard 2021 {published data only}
    1. Akard TF, Dietrich MS, Friedman DL, Wray S, Gerhardt CA, Hendricks-Ferguson V, et al. Randomized clinical trial of a legacy intervention for quality of life in children with advanced cancer. Journal of Palliative Medicine 2021;24(5):680-8. - PMC - PubMed
Akard 2021b {published data only}
    1. Akard TF, Dietrich MS, Friedman DL, Gerhardt CA, Given B, Hendricks-Ferguson V, et al. Improved parent–child communication following a RCT evaluating a legacy intervention for children with advanced cancer. Progress in Palliative Care 2021;29(3):130-9. [DOI: 10.1080/09699260.2020.1826778] - DOI - PMC - PubMed
Akyar 2019 {published data only}
    1. Akyar I, Dionne-Odom JN, Bakitas MA. Using patients and their caregivers feedback to develop ENABLE CHF-PC: an early palliative care intervention for advanced heart failure. Journal of Palliative Care 2019;34(2):103-10. - PubMed
Alexander 2006 {published data only}
    1. Alexander SC, Keitz SA, Sloane R, Tulsky JA. A controlled trial of a short course to improve residents' communication with patients at the end of life. Academic Medicine 2006;81(11):1008-12. [DOI: 10.1097/01.ACM.0000242580.83851.ad] - DOI - PubMed
Alghanim 2019 {published data only}
    1. Alghanim F, Zakaria S, Furqan M, Prichett L, Tao X. Increasing communication and trust in the ICU: the critical care collaboration and communication (C4) project. American Journal of Respiratory and Critical Care Medicine 2019;199:A4152.
Allen 2008 {published data only}
    1. Allen RS, Allen JY, Hilgeman MM, DeCoster J. End-of-life decision-making, decisional conflict, and enhanced information: race effects. Journal of the American Geriatrics Society 2008;56(10):1904-9. [DOI: 10.1111/j.1532-5415.2008.01929.x] - DOI - PubMed
Ambuel 2001 {published data only}
    1. Ambuel B, Mazzone MF. Breaking bad news and discussing death. Primary Care; Clinics in Office Practice 2001;28(2):249-67. - PubMed
An 2019 {published data only}
    1. An A, Ladwig S, Epstein R, Prigerson H, Duberstein P. The power of human connection (FR441B). Journal of Pain and Symptom Management 2019;57(2):421.
An 2020 {published data only}
    1. An AW, Ladwig S, Epstein RM, Prigerson HG, Duberstein PR. The impact of the caregiver-oncologist relationship on caregiver experiences of end-of-life care and bereavement outcomes. Supportive Care in Cancer 2020;28:4219–25. [DOI: ] - PubMed
Anandan 2020 {published data only}
    1. Anandan A, Kwekkeboom K, Zelenski A, Campbell T. A randomized controlled trial of TrialTALK: a designed conversation for cancer treatment decision making (GP705). Journal of Pain and Symptom Management 2020;60(1):248-9.
Ang 2018 {published data only}
    1. Ang K, Hepgul N, Gao W, Higginson IJ. Strategies used in improving and assessing the level of reporting of implementation fidelity in randomised controlled trials of palliative care complex interventions: a systematic review. Palliative Medicine 2018;32:500-16. [DOI: ] - PubMed
Anonymous 2012 {published data only}
    1. Anonymous. Summaries for patients: end-of-life care discussions between patients with advanced cancer and doctors. Annals of Internal Medicine 2012;156(3):I34. [DOI: ] - PubMed
Aoun 2015 {published data only}
    1. Aoun S, Deas K, Toye C, Ewing G, Grande G, Stajduhar K. Supporting family caregivers to identify their own needs in end-of-life care: qualitative findings from a stepped wedge cluster trial. Palliative Medicine 2015;29:508-17. [DOI: ] - PubMed
Au 2006 {published data only}
    1. Au DH, Udris EM, Fihn SD, McDonell MB, Curtis JR. Differences in health care utilization at the end of life among patients with chronic obstructive pulmonary disease and patients with lung cancer. Archives of Internal Medicine 2006;166(3):326-31. - PubMed
Azoulay 2001 {published data only}
    1. Azoulay E, Pochard F, Chevret S, Lemaire F, Mokhatari M, Le Gall JR, et al. Meeting the needs of intensive care unit patient families: a multicenter study. American Journal of Respiratory and Critical Care Medicine 2001;163:135-9. - PubMed
Azoulay 2002 {published data only}
    1. Azoulay E, Pochard F, Chevret S, Jourdain M, Bornstain C, Wernet A, et al. Impact of a family information leaflet on effectiveness of information provided to family members of intensive care unit patients: a multicenter, prospective, randomized, controlled trial. American Journal of Respiratory and Critical Care Medicine 2002;165:438-42. - PubMed
Azoulay 2007 {published data only}
    1. Azoulay E, Lautrette A, Darmon M, Megarbane B, Joly LM, Schlemmer B. A proactive communication strategy for family members of patients dying in the ICU: a multicenter randomized controlled trial. In: American Thoracic Society International Conference; 2007 May 18-23; San Francisco (California). 2007:Abstract No A509.
Azoulay 2018 {published data only}
    1. Azoulay E, Forel JM, Vinatier I, Truillet R, Renault A, Valade S, et al. Questions to improve family-staff communication in the ICU: a randomized controlled trial. Intensive Care Medicine 2018;44(11):1879-87. - PubMed
Back 2007 {published data only}
    1. Back AL, Arnold RM, Baile WF, Fryer-Edwards K, Alexander SC, Barley GE, et al. Efficacy of communication skills training for giving bad news and discussing transitions to palliative care. Archives of Internal Medicine 2007;167(5):453-60. - PubMed
Baharvandi {published data only}
    1. Baharvandi B, Moghadam Kobra K, Rashidi Homayoon H. The effectiveness of compassion-focused therapy on ambiguity tolerance and death anxiety in the elderly. Aging Psychology 2020;6(1):13-26.
Bahary 2016 {published data only}
    1. Bahary N, Claxton R, Childers J, Kavalieratos D, King L, Lembersky BC, et al. A pilot trial of early specialty palliative care for patients with advanced pancreatic cancer: challenges encountered and lessons learned. Journal of Clinical Oncology 2016;34:110-10. [DOI: 10.1200/jco.2016.34.26_suppl.110] - DOI - PMC - PubMed
Bajwah 2012 {published data only}
    1. Bajwah S, Higginson IJ, Wells AU, Koffman J, Ross J R, Birring SS, et al. Developing and evaluating a hospital2home palliative care service for patients with advanced progressive idiopathic fibrotic interstitial lung disease: phase 0-II. Palliative Medicine 2012;26(4):545. [DOI: 10.1177/0269216312446391] - DOI
Baker 2000 {published data only}
    1. Baker R, Wu AW, Teno JM, Kreling B, Damiano AM, Rubin HR, et al. Family satisfaction with end-of-life care in seriously ill hospitalized adults. Journal of the American Geriatrics Society 2000;48(5 Supplement):S61-9. - PubMed
Baker 2017 {published data only}
    1. Baker J, Friebert S, Briggs L, Lyon M. Family-centered advance care planning for teens with cancer (FACE-TC): a demonstration of key components of the face intervention/respecting choices interview for AYA cancer patients. Pediatric Blood and Cancer 2017;64 Supplement 1:S73. [DOI: ]
Baker 2017a {published data only}
    1. Baker J, Friebert S, Briggs L, Lyon M. Family-centered advance care planning for teens with cancer (FACE-TC): a demonstration of key components of the face intervention/respecting choices interview for AYA cancer patients. Pediatric Blood and Cancer (30th Annual Meeting of the American Society of Pediatric Hematology/Oncology (ASPHO); 2017 April 26-29; Montreal (Canada)) 2017;64 Supplement 1:S73. [DOI: 10.1002/pbc.26591] - DOI
Barrio‐Cantalejo 2009 {published data only}
    1. Barrio-Cantalejo IM, Molina-Ruiz A, Simón-Lorda P, Cámara-Medina C, Toral López I, Mar Rodríguez del Aguila M, et al. Advance directives and proxies' predictions about patients' treatment preferences. Nursing Ethics 2009;16(1):93-109. [DOI: 10.1177/0969733008097995] - DOI - PubMed
Bartlow 2005 {published data only}
    1. Bartlow B. Discussing end-of-life care or what do we know? Nephrology News & Issues 2005;19(4):55-6, 66. - PubMed
Bauman 2015 {published data only}
    1. Bauman JR, Schleicher S, Nipp RD, El-Jawahri A, Pirl WF, Greer JA, et al. Feasibility of a pilot study of an intervention to Enhance Communication during Hospice care with Oncology (ECHO). Journal of Clinical Oncology 2015;33(29 Suppl):51-51. [DOI: 10.1200/jco.2015.33.29_suppl.51] - DOI
Bernacki 2014 {published data only}
    1. Bernacki R, Block S. The Serious Illness Communication Checklist (FR408-B). Journal of Pain and Symptom Management 2014;47:420. [DOI: ] - PubMed
Best 2019 {published data only}
    1. Best M, McArdle MB, Huang YJ, Clayton J, Butow P. How and how much is spirituality discussed in palliative care consultations for advanced cancer patients with and without a question prompt list? Patient Education and Counseling 2019;102(12):2208-13. - PubMed
Bhatia 2015 {published data only}
    1. Bhatia N, Tibballs J. Deficiencies and missed opportunities to formulate clinical guidelines in Australia for withholding or withdrawing life-sustaining treatment in severely disabled and impaired infants. Journal of Bioethical Inquiry 2015;12(3):449-59. [DOI: ] - PubMed
Bickell 2017 {published data only}
    1. Bickell NA, Adelson K, Gonsky J, Pintova S, Levy B, Lin JJ, et al. Goals of care discussions: do advanced cancer patients have them and what difference do they make? Journal of General Internal Medicine 2017;32 (2 Supplement 1):S201.
Bickell 2018 {published data only}
    1. Bickell NA, Adelson K, Gonsky J, Lin JJ, Pintova S, Franco R, et al. Does training oncologists to have goals of care discussions increase and improve the quality of GoC discussions with advanced cancer patients? Journal of General Internal Medicine 2018;33 (2 Supplement 1):170-1.
Bickell 2018b {published data only}
    1. Bickell NA, Adelson KB, Gonsky JP, Lin JJ, Franco R, Egorova N, et al . Does training oncologists to have goals of care discussions affect healthcare utilization among patients with advanced cancer? Journal of Clinical Oncology 2018;36(15 Supplement):6595-6595. [DOI: 10.1200/JCO.2018.36.15-suppl.6595] - DOI
Bickell 2020 {published data only}
    1. Bickell NA, Back AL, Adelson K, Gonsky JP, Egorova N, Pintova S, et al. Effects of a communication intervention randomized controlled trial to enable goals-of-care discussions. JCO Oncology Practice 2020;16(9):E1015-E28. - PubMed
Bloch 2015 {published data only}
    1. Bloch N, Krantz AC, Iqbal A, Frydryk A. Group discussions about future care planning. Journal of General Internal Medicine 2015;2:S534.
Bose‐Brill 2016 {published data only}
    1. Bose-Brill S, Kretovics M, Ballenger T, Modan G, Lai A, Belanger L, et al. Testing of a tethered personal health record framework for early end-of-life discussions. American Journal of Managed Care 2016;22(7):e258-e263. - PubMed
Boyd 2016 {unpublished data only}
    1. Boyd KJ. Early palliative care for people with advanced illnesses: research into practice. EThos 2016. [The University of Edinburgh, thesis by publication 2015]
Braus 2016 {published data only}
    1. Braus N, Campbell TC, Kwekkeboom KL, Ferguson S, Harvey C, Krupp AE, et al. Prospective study of a proactive palliative care rounding intervention in a medical ICU. Intensive Care Medicine 2016;42:54-62. [DOI: ] - PMC - PubMed
Brown 1999 {published data only}
    1. Brown R, Butow PN, Boyer MJ, Tattersall MH. Promoting patient participation in the cancer consultation: evaluation of a prompt sheetand coaching in question-asking. British Journal of Cancer 1999;80:242-8. - PMC - PubMed
Brown 2001 {published data only}
    1. Brown RF, Butow PN, Dunn SM, Tattersall MH. Promoting patient participation and shortening cancer consultations: a randomised trial. British Journal of Cancer 2001;85:1273-9. - PMC - PubMed
Buck 2013 {published data only}
    1. Buck HG. Help patients and families choose end-of-life care "wisely". Nursing 2013;43(7):16-7. [DOI: ] - PubMed
Butow 1994 {published data only}
    1. Butow PN, Dunn SM, Tattersall MHN, Jones QJ. Patient participation in the cancer consultation: evaluation of a question prompt sheet. Annals of Oncology 1994;5:199-204. - PubMed
Carson 2016 {published data only}
    1. Carson SS, Cox CE, Wallenstein S, Hanson LC, Danis M, Tulsky JA, et al. Effect of palliative care-led meetings for families of patients with chronic critical illness: a randomized clinical trial [Erratum appears in JAMA 2017;317(20):2134; PMID: 28535211]. JAMA 2016;316:51-62. [DOI: ] - PMC - PubMed
Chang 2020 {published data only}
    1. Chang WT, Wang ST, Hsu CH, Tsai LM, Chan SH, Chen HM. Effects of illness representation-focused patient education on illness representations and self-care in patients with heart failure: a randomized clinical trial. Journal of Clinical Nursing 2020;29(17-18):3461-72. - PubMed
Chen 2019 {published data only}
    1. Chen CH, Chen JS, Wen FH, Chang WC, Chou WC, Hsieh CH, et al. An individualized, interactive intervention promotes terminally ill cancer patients' prognostic awareness and reduces cardiopulmonary resuscitation received in the last month of life: secondary analysis of a randomized clinical trial. Journal of Pain and Symptom Management 2019;57(4):705-14. - PubMed
Chung Vincent 2016 {published data only}
    1. Chung VM, Koczywas M, Williams A, Hurria A, Borneman TR, Cooper R, et al. Integration of palliative care for patients with solid tumors on phase I clinical trials. Journal of Clinical Oncology 2016;34:138-138. [DOI: 10.1200/jco.2016.34.26_suppl.138] - DOI
Clarke‐Pounder 2015 {published data only}
    1. Clarke-Pounder JP, Boss RD, Roter DL, Hutton N, Larson S, Donohue PK. Communication intervention in the neonatal intensive care unit: can it backfire? Journal of Palliative Medicine 2015;18:157-61. [DOI: 10.1089/jpm.2014.0037] - DOI - PubMed
Clayton 2012 {published data only}
    1. Clayton JM, Natalia C, Butow PN, Simpson JM, O'Brien AM, Devine R, et al. Physician endorsement alone may not enhance question-asking by advanced cancer patients during consultations about palliative care. Supportive Care in Cancer 2012;20(7):1457-64. [DOI: 10.1007/s00520-011-1229-2] - DOI - PubMed
Coats 2018 {published data only}
    1. Coats H, Downey L, Sharma RK, Curtis JR, Engelberg RA. Quality of communication and trust in patients with serious illness: an exploratory study of the relationships of race/ethnicity, socioeconomic status, and religiosity. Journal of Pain and Symptom Management 2018;56(4):530-40. - PMC - PubMed
Connors 1995 {published data only}
    1. Connors AF, Dawson NV, Desbiens NA, Fulkerson WJ, Goldman L, Knaus WA, et al. The SUPPORT principal investigators: a controlled trial to improve care for the seriously ill hospitalised patients: the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment (SUPPORT). JAMA 1995;274(20):1591-8. - PubMed
Cornbleet 2002 {published data only}
    1. Cornbleet MA, Campbell P, Murray S, Stevenson M, Bond S. Patient-held records in cancer and palliative care: a randomized, prospective trial. Palliative Medicine 2002;16(3):205-12. [DOI: 10.1191/0269216302pm541oa] - DOI - PubMed
Curtis 1997 {published data only}
    1. Curtis JR, Patrick DL. Barriers to communication about end-of-life care in AIDS patients. Journal of General Internal Medicine 1997;12(12):736-41. - PMC - PubMed
Curtis 2004 {published data only}
    1. Curtis JR, Engelberg RA, Nielsen EL, Au DH, Patrick DL. Patient-physician communication about end-of-life care for patients with severe COPD. European Respiratory Journal 2004;24(2):200-5. - PubMed
Curtis 2005 {published data only}
    1. Curtis JR, Engelberg RA, Wenrich MD, Au DH. Communication about palliative care for patients with chronic obstructive pulmonary disease. Journal of Palliative Care 2005;21(3):157-64. - PubMed
Curtis 2013 {published data only}
    1. Curtis JR, Back AL, Ford DW, Downey L, Shannon SE, Doorenboos AZ, et al. Effect of communication skills training for residents and nurse practitioners on quality of communication with patients with serious illness: a randomized trial. JAMA 2013;310(21):2271-81. [DOI: 10.1001/jama.2013.282081] - DOI - PMC - PubMed
Curtis 2016 {published data only}
    1. Curtis JR, Treece PD, Nielsen EL, Gold J, Ciechanowski PS, Shannon SE, et al. Randomized trial of communication facilitators to reduce family distress and intensity of end-of-life care. American Journal of Respiratory and Critical Care Medicine 2016;193(2):154-62. [DOI: 10.1164/rccm.201505-0900OC] - DOI - PMC - PubMed
Curtis 2018 {published data only}
    1. Curtis JR, Downey L, Back AL, Nielsen EL, Paul S, Lahdya AZ, et al. Effect of a patient and clinician communication-priming intervention on patient-reported goals-of-care discussions between patients with serious illness and clinicians: a randomized clinical trial. JAMA Internal Medicine 2018;178(7):930-40. [DOI: 10.1001/jamainternmed.2018.2317] - DOI - PMC - PubMed
    1. NCT01933789. Improving Communication About Serious Illness (ICSI). clinicaltrials.gov/show/NCT01933789 (first received 2 September 2013). [NCT01933789]
Curtis 2018a {published data only}
    1. Curtis JR, Downey L, Back A, Nielsen E, Treece P, Engelberg R. A patient and clinician communication-priming intervention increases patient-reported goals-of-care discussions between patients with serious illness and clinicians: a randomized trial. Palliative Medicine 2018;32(1 Supplement 1):9. [DOI: ] - PMC - PubMed
Dangayach 2011 {published data only}
    1. Dangayach N, Mittal K, Raval D, Sharma K, Peddagovindu B, Kurungati G, et al. Evaluation of a standardized protocol for enhancing patient understanding of advanced directives and end of life care: a single center randomized controlled trial. Neurocritical Care 2011;15(1 Supplement 1):S168. [DOI: 10.1007/s12028-011-9625-5] - DOI
Delgado‐Guay 2016 {published data only}
    1. Delgado-Guay MO, Rodriguez-Nunez A, De la Cruz V, Frisbee-Hume S, Williams J, Wu J, et al. Advanced cancer patients’ reported wishes at the end of life: a randomized controlled trial. Supportive Care in Cancer 2016;24:4273–81. [DOI: 10.1007/s00520-016-3260-9] - DOI - PubMed
De Padova 2008 {published data only}
    1. De Padova S, Carla G, Maniglia R, Salamina P, Lorusso V. Communication near the end of life. Tumori 2008;94(4):621; author reply 621-2. - PubMed
Dimoska 2008 {published data only}
    1. Dimoska A, Tattersall MHN, Butow PN, Shepherd P, Kinnersley P. Can a “prompt list” empower cancer patients to ask relevant questions? Cancer 2008;113:225-37. - 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. - PMC - PubMed
Dose 2015 {published data only}
    1. Dose A, Holland D, Vanderboom C, Ingram C, Wild E. Sharing the journey: technology-enhanced transitional palliative care for rural patients/caregivers. Journal of Pain and Symptom Management 2015;49(2):422.
EAPC 2016 {published data only}
    1. European Association for Palliative Care. Abstracts of the 9th World Research Congress of the European Association for Palliative Care (EAPC), 2016 June 9-11; Dublin (Ireland). Palliative Medicine 2016;30(6):Meeting Abstracts.
El‐Jawahri 2010 {published data only}
    1. El-Jawahri A, Podgurski LM, Eichler AF, Plotkin SR, Temel JS, Mitchell SL, et al. Use of video to facilitate end-of-life discussions with patients with cancer: a randomized controlled trial [Erratum appears in Journal of Clinical Oncology 2010;28(8):1438]. Journal of Clinical Oncology 2010;28:305-10. [DOI: ] - PMC - PubMed
El‐Jawahri 2019 {published data only}
    1. El-Jawahri A, Vanbenschoten O, Fenech AL, Jankowski AL, Markovitz N, Traeger L, et al. Randomized trial of a hospice video decision aid for patients with advanced cancer and their caregivers. Journal of Clinical Oncology 2019;37 (31 Supplement):42. [DOI: 10.1200/JCO.2019.37.15_suppl.11513] - DOI
Enzinger 2020 {published data only}
    1. Enzinger AC, Uno H, McCleary N, Frank E, Sanoff H, Van Loon K, et al. Effectiveness of a multimedia educational intervention to improve understanding of the risks and benefits of palliative chemotherapy in patients with advanced cancer: a randomized clinical trial. JAMA Oncology 2020;6(8):1265-70. - PMC - PubMed
Ernecoff 2017 {published data only}
    1. Ernecoff N, Zimmerman S, Mitchell S, Song MK, Lin FC, Wessell K, et al. Goals of care and the dying experience in advanced dementia: what might be learned by implementing goals of care. Journal of Pain and Symptom Management 2017;53(2):416.
Fakhri 2016 {published data only}
    1. Fakhri S, Engelburg R, Downey L, Curtis JR. Factors affecting patients' discussions about end-of-life care. Journal of Investigative Medicine 2016;64(1):146-7. [DOI: ]
Fakhri 2016a {published data only}
    1. Fakhri S, Engelberg RA, Downey L, Nielsen EL, Paul S, Lahdya AZ, et al. Factors affecting patients' preferences for and actual discussions about end-of-life care. Journal of Pain and Symptom Management 2016;52(3):386-94. [DOI: 10.1016/j.jpainsymman.2016.03.012] - DOI - PMC - PubMed
Fallowfield 2002 {published data only}
    1. Fallowfield L, Jenkins V, Farewell V, Saul J, Duffy A, Eves R. Efficacy of a Cancer Research UK communication skills training model for oncologists: a randomised controlled trial. Lancet 2002;359(9307):650-6. - PubMed
Fischer 2021 {published data only}
    1. Fischer SM, Tropeano L, Lahoff D, Owens B, Nielsen E, Retrum J, et al. Integrating palliative care social workers into subacute settings: feasibility of the assessing and listening to individual goals and needs intervention trial. Journal of Palliative Medicine 2021;24(6):830-7. - PubMed
Flannery 2019 {published data only}
    1. Flannery MA, Culakova E, Poh Loh K, Epstein RM, Kamen CS, Obrecht S. Improving person-centered communication of goals, proxy, and advance directives in older patients with advanced cancer: secondary analysis from a University of Rochester NCI Community Oncology Research Program (NCORP) cluster randomized controlled trial (CRCT). Journal of Clinical Oncology 2019;37(15 Supplement):11523. [DOI: 10.1200/JCO.2019.37.15_suppl.11523] - DOI
Flannery 2022 {published data only}
    1. Flannery MA, Mohile S, Culakova E, Norton S, Kamen C, Dionne-Odom JN, et al. Completion of patient-reported outcome questionnaires among older adults with advanced cancer. Journal of Pain and Symptom Management 2022;63(2):301-10. [DOI: 10.1016/j.jpainsymman.2021.07.032] [PMID: ] - DOI - PMC - PubMed
Freytag 2018 {published data only}
    1. Freytag J, Street RL, Xing G, Duberstein PR, Fiscella K, Tacredi DJ, et al. The ecology of patient and caregiver participation in consultations involving advanced cancer. Psycho-oncology 2018;27(6):1642-9. - PMC - PubMed
Fujimori 2014 {published data only}
    1. Fujimori M, Shirai Y, Asai M, Kubota K, Katsumata N, Uchitomi Y. Effect of communication skills training program for oncologists based on patient preferences for communication when receiving bad news: a randomized controlled trial. Journal of Clinical Oncology 2014;32:2166-72. [DOI: 10.1200/JCO.2013.51.2756] - DOI - PubMed
Fujimori 2017 {published data only}
    1. Fujimori M. Advanced directives - are they useful? Journal of Thoracic Oncology 2017;12(11 Supplement 2):S1622-s1623.
Garrouste‐Orgeas 2016 {published data only}
    1. Garrouste-Orgeas M, Max A, Lerin T, Gregoire C, Ruckly S, Kloeckner M, et al. Impact of proactive nurse participation in ICU family conferences: a mixed-method study. Annals of Intensive Care 2016;6 Supplement 1:1-236. [DOI: ] - PubMed
Gilligan 2017 {published data only}
    1. Gilligan T, Coyle N, Frankel RM, Berry DL, Bohlke K, Epstein RM, et al. Patient-clinician communication: American Society of Clinical Oncology consensus guideline. Journal of Clinical Oncology 2017;35(31):3618-32. [DOI: ] - PubMed
Goelz 2010 {published data only}
    1. Goelz T, Wuensch A, Stubenrauch S, De Figueiredo M, Bertz H, Wirsching M, et al. Improving communication during the transition to palliative care in oncology: a concise and individualized communication skills training demonstrates content specific effects in a randomized controlled trial. Psycho-oncology 2010;19:S93-S4.
Goldstein 2019 {published data only}
    1. Goldstein NE, Mather H, McKendrick K, Gelfman LP, Hutchinson MD, Lampert R, et al. Improving communication in heart failure patient care. Journal of the American College of Cardiology 2019;74(13):1682-92. - PMC - PubMed
Gramling 2016 {published data only}
    1. Gramling R, Fiscella K, Xing G, Hoerger M, Duberstein P, Plumb S, et al. Determinants of patient-oncologist prognostic discordance in advanced cancer. JAMA Oncology 2016;2(11):1421–6. - PMC - PubMed
Graul 2019 {published data only}
    1. Graul A, Haggerty A, Stickley C, Kumar P, Morales K, Bogner H, et al . Effect of patient education on palliative care knowledge and acceptability of outpatient palliative care service among gynecologic oncology patients. Journal of Clinical Oncology 2019;37(15 Supplement):11583. [DOI: 10.1200/JCO.2019.37.15_suppl.11583] - DOI
Graul 2020 {published data only}
    1. Graul A, Haggerty A, Stickley C, Kumar P, Morales K, Bogner H, et al. Effect of patient education on palliative care knowledge and acceptability of outpatient palliative care services among gynecologic oncology patients: a randomized controlled trial. Gynecologic Oncology 2020;156(2):482-7. - PubMed
Greer 2018 {published data only}
    1. Greer JA, Jacobs JM, El-Jawahri A, Nipp RD, Gallagher ER, Pirl WF, et al. Role of patient coping strategies in understanding the effects of early palliative care on quality of life and mood. Journal of Clinical Oncology 2018;36(1):53-60. - PMC - PubMed
Hancock 2016 {published data only}
    1. Hancock H, Pituch K, Uzark K, Bhat P, Fifer C, Silveira M, et al. Impact of early palliative care intervention on maternal stress in mothers of infants prenatally diagnosed with single ventricle heart disease: a randomized clinical trial. Journal of the American College of Cardiology 2016;1:920.
Hannon 2015 {published data only}
    1. Hannon B, Swami N, Pope A, Zimmermann C. Strengthened relationships: exploring the effects of an early palliative care intervention on patient-caregiver dyads. Supportive Care in Cancer 2015;23(1 Supplement 1):S209-S210. [DOI: 10.1007/s00520-015-2712-y] - DOI
Hanson 2019 {published data only}
    1. Hanson LC, Kistler CE, Lavin K, Gabriel SL, Ernecoff NC, Lin FC, et al. Triggered palliative care for late-stage dementia: a pilot randomized trial. Journal of Pain and Symptom Management 2019;57(1):10-9. - PMC - PubMed
Henselmans 2020 {published data only}
    1. Henselmans I, Laarhoven HWM, Maarschalkerweerd P, Haes HCJM, Dijkgraaf MGW, Sommeijer DW, et al . Effect of a skills training for oncologists and a patient communication aid on shared decision making about palliative systemic treatment: a randomized clinical trial. Oncologist 2020;25:e578–e588. - PMC - PubMed
Hinton 1998 {published data only}
    1. Hinton J. An assessment of open communication between people with terminal cancer, caring relatives, and others during home care. Journal of Palliative Care 1998;14(3):15-23. - PubMed
Houben 2019 {published data only}
    1. Houben CHM, Spruit MA, Luyten H, Pennings H-J, den Boogaart VEM, Creemers JPHM, et al. Cluster-randomised trial of a nurse-led advance care planning session in patients with COPD and their loved ones. Thorax 2019;74:328-36. - PubMed
    1. Houben CHM, Spruit MA, Wouters EFM, Janssen DJA. A randomised controlled trial on the efficacy of advance care planning on the quality of end-of-life care and communication in patients with COPD: the research protocol. BMJ Open 2014;4:e004465. [DOI: 10.1136/bmjopen-2013-004465] - DOI - PMC - PubMed
Hudson 2018 {published data only}
    1. Hudson P, Thomas K, Girgis A, Mitchell G, Philip J, Parker D, et al. Benefits of family meetings for hospitalized palliative care patients and their family caregivers. Journal of Pain and Symptom Management 2018;56(6):e56-e7.
Hudson 2021 {published data only}
    1. Hudson P, Girgis A, Thomas K, Philip J, Currow DC, Mitchell G, et al. Do family meetings for hospitalised palliative care patients improve outcomes and reduce health care costs? A cluster randomised trial. Palliative Medicine 2021;35(1):188-99. [DOI: 10.1177/0269216320967282] - DOI - PubMed
ISRCTN36040085 {unpublished data only}ISRCTN36040085
    1. ISRCTN36040085. ImproveCare - The management of clinical uncertainty in hospital settings. www.isrctn.com/ISRCTN36040085 (first received 18 January 2017).
Janssen 2011a {published data only}
    1. Janssen DJ, Curtis JR, Au DH, Spruit MA, Downey L, Schols JM, et al. Patient-clinician communication about end-of-life care for Dutch and US patients with COPD. European Respiratory Journal 2011;38(2):268-76. - PubMed
Janssen 2011b {published data only}
    1. Janssen DJ, Curtis JR, Au DH, Spruit MA, Downey L, Schols JM, et al. Patient-clinician communication about end-of-life care for patients with COPD in the Netherlands and the US. American Journal of Respiratory and Critical Care Medicine 2011;183(1):Meeting Abstracts. - PubMed
Johnson 2016 {published data only}
    1. Johnson S, Clayton J, Butow PN, Silvester W, Detering K, Hall J, et al. Advance care planning in patients with incurable cancer: study protocol for a randomised controlled trial. BMJ Open 2016;6:e012387. [DOI: 10.1136/bmjopen-2016-012387] - DOI - PMC - PubMed
Johnson 2016a {published data only}
    1. Johnson S, Vaccaro L, Butow PN, Kiely BE, Silvester W, Detering K, et al. Advance care planning increases communication between cancer patients, their oncologists and their family: an RCT. Asia-Pacific Journal of Clinical Oncology 2016;12(Supplement 5):93. [ACTRN12613001288718]
Jones 2004 {published data only}
    1. Jones T. Ethics consultations reduced hospital, ICU, and ventilation days in patients who died before hospital discharge in the ICU. Evidence Based Nursing 2004;7:53-53. - PubMed
Jones 2011 {published data only}
    1. Jones L, Harrington J, Barlow CA, Tookman A, Drake R, Barnes K, et al. Advance care planning in advanced cancer: can it be achieved? An exploratory randomized patient preference trial of a care planning discussion. Palliative & Supportive Care 2011;9(1):3-13. [DOI: 10.1017/S1478951510000490] - DOI - PubMed
Kirchhoff 2012 {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. [DOI: 10.1111/j.1532-5415.2012.03917.x] - DOI - PMC - PubMed
Knauft 2005 {published data only}
    1. Knauft E, Nielsen EL, Engelberg RA, Patrick DL, Curtis JR. Barriers and facilitators to end-of-life care communication for patients with COPD. Chest 2005;127(6):2188-96. - PubMed
Knaus 1995 {published data only}
    1. KnausWA, Connors AF, Dawson NV. The SUPPORT Principal Investigators. A controlled trial to improve care for seriously ill hospitalized patients: the study to understand prognoses and preferences for outcomes and risks of treatments (SUPPORT). JAMA 1995;274(20):1591-8. - PubMed
Kruse 2013 {published data only}
    1. Kruse RL, Parker Oliver D, Wittenberg-Lyles E, Demiris G. Conducting the ACTIVE randomized trial in hospice care: keys to success. Clinical Trials 2013;10(1):160-9. [DOI: 10.1177/1740774512461858] - DOI - PMC - PubMed
Lakin 2017 {published data only}
    1. Lakin JR, Koritsansky LA, Cunningham R, Maloney FL, Neal BJ, Paladino J, et al. A systematic intervention to improve serious illness communication in primary care. Health Affairs 2017;36:1264-9. - PubMed
Lee 2015 {published data only}
    1. Lee BC, Kimmel AL, Lyon ME. Who will speak for me? Identifying decision-makers in family-centered palliative care research. Journal of Adolescent Health 2015;1:S52-S53. [DOI: ]
Lee Brittney 2017 {published data only}
    1. Lee Brittney C, Houston PE, Rana SR, Kimmel AL, D'Angelo LJ, Lyon ME. Who will speak for me? Disparities in palliative care research with ''unbefriended'' adolescents living with HIV/AIDS. Journal of Palliative Medicine 2017;20:1135-8. [DOI: ]
Lincoln 2020 {published data only}
    1. Lincoln TE, Shields A, Petty K, Campbell T, Bellon J, Buddadhumaruk P, et al. Physicians' and family members' perception of a family support intervention in intensive care units. American Journal of Respiratory and Critical Care Medicine 2020;201:A2811. [URL: www.atsjournals.org/doi/abs/10.1164/ajrccm-conference.2020.201.1_Meeting...]
Lincoln 2020b {published data only}
    1. Lincoln T, Shields AM, Buddadhumaruk P, Chang CCh, Pike F, Chen H, et al. Protocol for a randomised trial of an interprofessional team-delivered intervention to support surrogate decision-makers in ICUs. BMJ Open 2020;10(3):e033521. [DOI: 10.1136/bmjopen-2019-033521] - DOI - PMC - PubMed
Loh 2020 {published data only}
    1. Loh KP, Xu H, Epstein RM, Mohile SG, Prigerson HG, Plumb S, et al. Associations of caregiver-oncologist discordance in prognostic understanding with caregiver-reported therapeutic alliance and anxiety. Journal of Pain and Symptom Management 2020;60(1):20-7. - PMC - PubMed
Long 2013 {published data only}
    1. Long AC, Engelberg RA, Downey L, Ford DW, Back AL, Kross EK, et al. Race, income, and education: associations with patient and family ratings of end-of-life care communication provided by physicians-in-training. American Journal of Respiratory and Critical Care Medicine 2013;187:Meeting Abstracts. - PMC - PubMed
Long 2014 {published data only}
    1. Long AC, Engelberg RA, Downey L, Kross EK, Reinke LF, Cecere Feemster L, et al. Race, income, and education: associations with patient and family ratings of end-of-life care and communication provided by physicians-in-training. Journal of Palliative Medicine 2014;17(4):435-47. [DOI: 10.1089/jpm.2013.0214] - DOI - PMC - PubMed
Lyon 2009 {published data only}
    1. Lyon ME, Garvie PA, McCarter R, Briggs L, He J, D'Angelo LJ. Who will speak for me? Improving end-of-life decision-making for adolescents with HIV and their families. Pediatrics 2009;123(2):e199-206. [DOI: 10.1542/peds.2008-2379] - DOI - PubMed
Lyon 2009a {published data only}
    1. Lyon ME, Garvie PA, Briggs L, He J, McCarter R, D'Angelo LJ. Development, feasibility, and acceptability of the Family/Adolescent-Centered (FACE) advance care planning intervention for adolescents with HIV. Journal of Palliative Medicine 2009;12:363-72. [DOI: 10.1089/jpm.2008.0261] - DOI - PMC - PubMed
Lyon 2013 {published data only}
    1. Lyon ME. Family centered advance care planning for teens. Journal of Palliative Medicine 2013;16(4):A7-A8. [DOI: ]
Lyon 2013a {published data only}
    1. Lyon ME, Jacobs S, Briggs L, Cheng YI, Wang J. Family-centered advance care planning for teens with cancer. JAMA Pediatrics 2013;167(5):460-7. [DOI: 10.1001/jamapediatrics.2013.943] - DOI - PubMed
Lyon 2014 {published data only}
    1. Lyon ME, Jacobs S, Briggs L, Cheng YI, Wang J. A longitudinal, randomized, controlled trial of advance care planning for teens with cancer: anxiety, depression, quality of life, advance directives, spirituality. Journal of Adolescent Health 2014;54(6):710-7. [DOI: 10.1016/j.jadohealth.2013.10.206] - DOI - PubMed
Lyon 2017 {published data only}
    1. Lyon ME, D'Angelo LJ, Dallas RH, Hinds PS, Garvie PA, Wilkins ML, et al. A randomized clinical trial of adolescents with HIV/AIDS: pediatric advance care planning. AIDS Care 2017;29(10):1287-96. [DOI: 10.1080/09540121.2017.1308463] - DOI - PMC - PubMed
Lyon 2020 {published data only}
    1. Lyon M, Friebert S, Thompkins J, Baker J, Needle J, Cheng Y, et al. Let's talk: quality of facilitator communication as a determinant of satisfaction with family centered pediatric advance care planning for teens with cancer (FACE-TC PACP). Pediatric Blood & Cancer 2020;67 Supplement 4:e28742. [DOI: 10.1002/pbc.28742] - DOI
Maciasz 2013 {published data only}
    1. Maciasz RM, Arnold RM, Chu E, Park SY, White DB, Vater LB, et al. Does it matter what you call it? A randomized trial of language used to describe palliative care services. Supportive Care in Cancer 2013;21:3411-9. [DOI: ] - PMC - PubMed
Maciasz 2013a {published data only}
    1. Maciasz R, Arnold R, Chu E, Park SY, Borgenheimer L, Schenker Y. Does it matter what you call It? a randomized trial of language used to describe palliative care services (TH340-A). Journal of Pain and Symptom Management 2013;45(2):359-60. [DOI: ] - PMC - PubMed
Mah 2020 {published data only}
    1. Mah K, Shapiro GK, Hales S, Rydall A, Malfitano C, An E, et al. The impact of attachment security on death preparation in advanced cancer: the role of couple communication. Psycho-oncology 2020;29(5):833-40. - PubMed
Malhotra 2019 {published data only}
    1. Malhotra C, Rajasekaran T, Kanesvaran R, Yee A, Bundoc FG, Singh R, et al . Pilot trial of a combined oncologist-patient-caregiver communication intervention in Singapore. JCO Oncology Practice 2020 ;16(2):e190-e200. - PubMed
Marbella 1998 {published data only}
    1. Marbella AM, Desbiens NA, Mueller-Rizner N, Layde PM. Surrogates' agreement with patients' resuscitation preferences: effect of age, relationship, and SUPPORT intervention. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment. Journal of Critical Care 1998;13(3):140-5. - PubMed
Martin 2020 {published data only}
    1. Martin M. Breaking bad news: providing communication guidance to doctor of nursing practice (DNP) students. Dissertation Abstracts International Section A: Humanities and Social Sciences 2020;81(3-A):No pagination specified.
Martinsson 2016 {published data only}
    1. Martinsson L, Heedman PA, Eriksson M, Tavelin B, Axelsson B. Increasing the number of patients receiving information about transition to end-of-life care: the effect of a half-day physician and nurse training. BMJ Supportive & Palliative Care 2016;6:452-8. [DOI: ] - PubMed
Matthys 2021 {published data only}
    1. Matthys O, De Vleminck A, Dierickx S, Deliens L, Vangoethem V, Hudson P, et al. Psychosocial and educational interventions for people with advanced cancer and their informal caregivers (diadic): protocol for a phase iii randomized controlled trial. Palliative Care and Social Practice 2021;15:28.
McFarlin 2011 {published data only}
    1. McFarlin J, Zomorodi M, Laskowitz D, Galanos A. Communication, healthcare attitudes, and the family conference (chat). Neurocritical Care 2011;15(1 Supplement 1):S176. [DOI: 10.1007/s12028-011-9625-5] - DOI
Mehnert 2017 {published data only}
    1. Mehnert A, Koranyi S, Scheffold K, Philipp R, Engelmann D, Quintero-Garzon L, et al. Frequency and course of psychological distress among patients with advanced cancer: preliminary efficacy of the German CALM trial. Psycho-oncology 2017;26(Supplement 3):64. [DOI: ]
Meier 2004 {published data only}
    1. Meier DE, Thar W, Jordan A, Goldhirsch SL, Siu A, Morrison RS. Integrating case management and palliative care. Journal of Palliative Medicine 2004;7(1):119-34. [DOI: 10.1089/109662104322737395] - DOI - PubMed
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. [DOI: 10.1017/S1478951515001091] - DOI - PubMed
Murray 2008 {published data only}
    1. Murray MA, O'Connor A, Stacey D, Wilson KG. Efficacy of a training intervention on the quality of practitioners' decision support for patients deciding about place of care at the end of life: a randomized control trial: study protocol. BMC Palliative Care 2008;7:4. [DOI: ] - PMC - PubMed
Murray 2010 {published data only}
    1. Murray MA, Stacey D, Wilson KG, O'Connor AM. Skills training to support patients considering place of end-of-life care: a randomized control trial. Journal of Palliative Care 2010;26(2):112-21. - PubMed
NCT00325611 {unpublished data only}
    1. NCT00325611. Multidisciplinary inpatient palliative care intervention [A multi-site replication of an inpatient palliative care program]. clinicaltrials.gov/ct2/show/NCT00325611 (first received 15 May 2006). [NCT00325611]
NCT00374010 {unpublished data only}
    1. NCT00374010. Improving patient-clinician communication about end-of-life care. clinicaltrials.gov/show/nct00374010 (first received 8 September 2006).
NCT00580515 {unpublished data only}
    1. NCT00580515. Trial of family focused grief therapy in palliative care and bereavement. clinicaltrials.gov/show/nct00580515 (first received 24 December 2007).
NCT01160367 {unpublished data only}
    1. NCT01160367. Trial of ascertaining individual preferences for loved one's role in end-of-life. clinicaltrials.gov/show/nct01160367 (first received 12 July 2010).
NCT01245621 {unpublished data only}
    1. NCT01245621. Study of palliative care intervention for advanced cancer patients and their caregivers - Educate Nurture Advise Before Life Ends (ENABLE III). clinicaltrials.gov/ct2/show/NCT01245621 (first received 22 November 2010). [NCT01245621]
NCT01289444 {published data only}
    1. NCT01289444. Longitudinal pediatric palliative care: quality of life & spiritual struggle (FACE). clinicaltrials.gov/ct2/show/NCT01289444 (first received 3 February 2011). [NCT01289444]
NCT01670461 {unpublished data only}
    1. NCT01670461. FAmily CEntered (FACE) advance care planning for teens with cancer. clinicaltrials.gov/show/nct01670461 (first received 22 August 2012).
NCT01828775 {unpublished data only}
    1. NCT01828775. Palliative care intervention in improving quality of life, psychological distress, and communication in patients with solid tumors receiving treatment. clinicaltrials.gov/show/nct01828775 (first received 11 April 2013).
NCT01914848 {unpublished data only}
    1. NCT01914848. Multiprofessional advance care planning and shared decision making for end of life care (MAPS). clinicaltrials.gov/show/nct01914848 (first received 2 August 2013).
NCT01944813 {unpublished data only}
    1. NCT01944813. Advance care planning: a way to improve end-of-life care life care. clinicaltrials.gov/show/nct01944813 (first received 18 September 2013).
NCT01990742 {unpublished data only}
    1. NCT01990742. Improving Palliative Care Through Teamwork (IMPACTT). clinicaltrials.gov/ct2/show/NCT01990742 (first received 21 November 2013). [NCT01990742]
NCT02112461 {unpublished data only}
    1. NCT02112461. Hospice and end-of-life symptom monitoring & support using an automated system designed for family caregivers (SCP). clinicaltrials.gov/show/nct02112461 (first received 14 April 2014).
NCT02261935 {unpublished data only}
    1. NCT02261935. Supporting family caregivers of palliative patients at home: the carer support needs assessment intervention (CSNAT). clinicaltrials.gov/ct2/show/NCT02261935 (first received 10 October 2014). [NCT02261935]
NCT02349412 {unpublished data only}
    1. NCT02349412. Early palliative care with standard care or standard care alone in improving quality of life of patients with incurable lung or non-colorectal gastrointestinal cancer and their family caregivers. clinicaltrials.gov/show/nct02349412 (first received 28 January 2015).
NCT02445937 {unpublished data only}
    1. NCT02445937. PARTNER II: improving patient and family centered care in advanced critical illness. clinicaltrials.gov/show/nct02445937 (first received 15 May 2015).
NCT02463162 {unpublished 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).
NCT02606149 {unpublished data only}
    1. NCT02606149. Truthful information on chemotherapy and its impact on chemotherapy at the end of life (HIPPOCRATE). clinicaltrials.gov/ct2/show/NCT02606149 (first received 17 November 2015). [NCT02606149]
NCT02723799 {unpublished data only}
    1. NCT02723799. Hope Promotion Program: effectiveness in palliative patients (HPP). clinicaltrials.gov/ct2/show/NCT02723799 (first received 30 March 2016). [NCT02723799]
NCT02730858 {unpublished data only}
    1. NCT02730858. Palliative and oncology care model in breast cancer. clinicaltrials.gov/ct2/show/NCT02730858 (first received 7 April 2016).
NCT02917603 {unpublished data only}
    1. NCT02917603. Shared decision making to improve palliative care in the nursing home. clinicaltrials.gov/show/nct02917603 (first received 28 September 2016).
NCT02944344 {unpublished data only}
    1. NCT02944344. Four conversations RCT. clinicaltrials.gov/ct2/show/NCT02944344 (first received 25 October 2016).
NCT03068013 {unpublished data only}
    1. NCT03068013. Managing Cancer and Living Meaningfully (CALM) adapted to Italian cancer care setting (CALM-IT). clinicaltrials.gov/show/nct03068013 (first received 1 March 2017).
NCT03099746 {unpublished data only}
    1. NCT03099746. Decision support among surrogate decision makers of the chronically critically ill (INVOLVE) [A clinical trial of decision support for end of life care among surrogate decision makers of the chronically critically ill]. clinicaltrials.gov/ct2/show/NCT03099746 (first received 4 April 2017). [NCT03099746]
NCT03138564 {unpublished data only}
    1. NCT03138564. An effectiveness-implementation trial of SPIRIT in ESRD. clinicaltrials.gov/show/nct03138564 (first received 3 May 2017).
NCT03387436 {unpublished data only}
    1. NCT03387436. The "Hand-in-Hand Study": improvement of quality of life in palliative cancer patients through collaborative advance care planning (COLAP). clinicaltrials.gov/show/nct03387436 (first received 2 January 2018).
NCT03506087 {unpublished data only}
    1. NCT03506087. Advance care planning coaching for patients with chronic kidney disease (MY WAY). clinicaltrials.gov/show/nct03506087 (first received 23 April 2018).
NCT03548142 {unpublished data only}
    1. NCT03548142. Advanced dementia and end-of-life. clinicaltrials.gov/ct2/show/NCT03548142 (first received 7 June 2018).
NCT03626402 {unpublished data only}
    1. NCT03626402. End-of-life care for African Americans: an outpatient intervention. clinicaltrials.gov/ct2/show/record/NCT03626402 (first received 13 August 2018).
Nipp 2020 {published data only}
    1. Nipp RD, Temel B, Fuh CX, Kay P, Landay S, Lage D, et al. Pilot randomized trial of a transdisciplinary geriatric and palliative care intervention for older adults with cancer. Journal of the National Comprehensive Cancer Network 2020;18(5):591-8. - PMC - PubMed
Nishioka 2019 {published data only}
    1. Nishioka M, Okuyama T, Uchida M, Aiki S, Ito Y, Osaga S, et al. What is the appropriate communication style for family members confronting difficult surrogate decision-making in palliative care?: a randomized video vignette study in medical staff with working experiences of clinical oncology. Japanese Journal of Clinical Oncology 2019;49(1):48-56. - PubMed
Norton 2019 {published data only}
    1. Norton SA, Wittink MN, Duberstein PR, Prigerson HG, Stanek S, Epstein RM. Family caregiver descriptions of stopping chemotherapy and end-of-life transitions. Supportive Care in Cancer 2019;27(2):669-75. - PMC - PubMed
O'Donnell 2016 {published data only}
    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.
O'Donnell 2018 {published data only}
    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;3:516-9. [DOI: ] - PMC - PubMed
Oliver 2001 {published data only}
    1. Oliver JW, Kravitz RL, Kaplan SH, Meyers FJ. Individualized patient education and coaching to improve pain control among cancer outpatients. Journal of Clinical Oncology 2001;19:2206-12. - PubMed
Oliver 2012 {published data only}
    1. Oliver DP, Demiris G, Wittenberg-Lyles E. The use of video technology for caregiver involvement in interdisciplinary hospice teams: preliminary experiences from the active randomized clinical trial. Journal of Pain and Symptom Management 2012;43(2):331. [DOI: ]
Paladino 2014 {published data only}
    1. Paladino J, Bernacki R, Hutchings M, Billings JA, Block S. Facilitators and barriers to advance care planning in oncology. Journal of Clinical Oncology 2014;32(31 Supplement):84-84. [DOI: 10.1200/jco.2014.32.31_suppl.84] - DOI
Paladino 2015 {published data only}
    1. Paladino J, Bernacki R, Billings J, Block S. Triggering advance care planning conversations in oncology and identifying barriers to these discussions. Journal of Pain and Symptom Management 2015;49(2):445-6.
Paladino 2016 {published data only}
    1. Paladino J, Lamas D, Lakin J, Epstein S, Bernacki R. Delivering more, better and earlier goals of care conversations to seriously ill oncology patients in the clinical setting. Journal of Pain and Symptom Management 2016;51(2):380-1.
Parker 2017 {published data only}
    1. Parker O, Demiris G, Washington K, Kruse RL, Petroski G. Hospice family caregiver involvement in care plan meetings: a mixed-methods randomized controlled trial. American Journal of Hospice & Palliative Care 2017;34:849-59. [DOI: ] - PMC - PubMed
Perry 2005 {published data only}
    1. Perry E, Swartz J, Brown S, Smith D, Kelly G, Swartz R. Peer mentoring: a culturally sensitive approach to end-of-life planning for long-term dialysis patients. American Journal of Kidney Diseases 2005;46(1):111-9. - PubMed
Pintova 2020 {published data only}
    1. Pintova S, Leibrandt R, Smith CB, Adelson KB, Gonsky J, Egorova N, et al. Conducting goals-of-care discussions takes less time than imagined. JCO Oncology Practice 2020;16(12):E1499-E506. - PubMed
Pirl 2019 {published data only}
    1. Pirl WF, Lerner J, Traeger L, Greer JA, El-Jawahri A, Temel JS. Oncologists' dispositional affect and likelihood of end-of-life discussions. Journal of Clinical Oncology 2019;34(26 Supplement 1):9.
Pollak 2019 {published data only}
    1. Pollak KI, Gao X, Beliveau J, Griffith B, Kennedy D, Casarett D. Pilot study to improve goals of care conversations among hospitalists. Journal of Pain and Symptom Management 2019;58(5):864-70. - PubMed
Pollak 2020 {published data only}
    1. Pollak KI, Gao XM, Arnold RM, Arnett K, Felton S, Fairclough DL, et al. Feasibility of using communication coaching to teach palliative care clinicians motivational interviewing. Journal of Pain and Symptom Management 2020;59(4):787-93. - PubMed
Porensky 2011 {published data only}
    1. Porensky E. Breaking bad news: effect of physician communication on analog patients' response. Dissertation Abstracts International: Section B: Sciences and Engineering 2011;71:4492.
Ramos 2013 {published data only}
    1. Ramos KJ, Engelberg RA, Downey L, Treece PD, Nielsen EL, Ganz FD, et al. Nurse ratings of the quality of dying in the ICU: associations with nurse reports of physician-nurse and physician-family communication. American Journal of Respiratory and Critical Care Medicine 2013;187:A4960.
Reinhardt 2015 {published data only}
    1. Reinhardt JP, Boerner K, Downes D. The positive association of end-of-life treatment discussions and care satisfaction in the nursing home. Journal of Social Work in End-of-Life & Palliative Care 2015;11:307-22. - PubMed
Reinhardt 2017 {published data only}
    1. Reinhardt JP, Downes D, Cimarolli V, Bomba P. End-of-life conversations and hospice placement: association with less aggressive care desired in the nursing home. Journal of Social Work in End-of-Life & Palliative Care 2017;13(1):61-81. [DOI: 10.1080/15524256.2017.1282919] - DOI - PubMed
Reinke 2011 {published data only}
    1. Reinke LF, Slatore CG, Uman J, Udris EM, Moss BR, Engelberg RA, et al. Patient-clinician communication about end-of-life care topics: is anyone talking to patients with chronic obstructive pulmonary disease? Journal of Palliative Medicine 2011;14(8):923-8. [DOI: 10.1089/jpm.2010.0509] - DOI - PubMed
Reuther 2014 {published data only}
    1. Reuther S, Holle D, Buscher I, Dortmann O, Muller R, Bartholomeyczik S, et al. Effect evaluation of two types of dementia-specific case conferences in German nursing homes (FallDem) using a stepped wedge design: study protocol for a randomized controlled trial. Trials 2014;15:319. [PMID: ] - PMC - PubMed
Rousseau 2016 {published data only}
    1. Rousseau PC. Curtis RJ, Treece PD, Nielsen EL, et al. Randomized trial of communication facilitators to reduce family distress and intensity of end-of-life care. Am J Respir Crit Care Med 2015;193:154-162. Journal of Palliative Medicine 2016;19(4):470-1. [DOI: 10.1089/jpm.2016.0039] - DOI - PMC - PubMed
Ruiz 2016 {published data only}
    1. Ruiz G, Holder RM, Graham N, Groninger H, Walker KA. Case study of initial patients with left-ventricular assist devices (LVADS) enrolled into palliative tele health connecting hospital to home (PATCH2) program. Journal of Cardiac Failure 2016;22(8, Supplement):S135. [DOI: ]
Russell 2016 {published data only}
    1. Russell J. The role of health care provider goals, plans, and physician orders for life-sustaining treatment (POLST) in preparing for conversations about end-of-life care. Journal of Health Communication 2016;21(9):1023-30. [DOI: 10.1080/10810730.2016.1204380] - DOI - PubMed
Saeed 2018 {published data only}
    1. Saeed F, Hoerger M, Norton SA, Guancial E, Epstein RM, Duberstein PR. Preference for palliative care in cancer patients: are men and women alike? Journal of Pain and Symptom Management 2018;56(1):1-6.e1. - PMC - PubMed
Sanchez 2018 {published data only}
    1. Sanchez R, Mateo KF. Survey-based priming intervention linked to improved communication with the seriously ill. Journal of Clinical Outcomes Management 2018;25(7):300-3.
Schneiderman 2003 {published data only}
    1. Schneiderman LJ, Gilmer T, Teetzel HD, Dugan DO, Blustein J, Cranford R, et al. Effect of ethics consultations on nonbeneficial life-sustaining treatments in the intensive care setting: a randomized controlled trial. JAMA 2003;290:1166-72. - PubMed
Smith 2017 {unpublished data only}
    1. Smith C. The Feasibility of Research in Cancer Patients Close to Death and the Impact on Evaluating a Complex Intervention. EThos 2017. [Imperial College London, PhD thesis]
Smucker 1993 {published data only}
    1. Smucker WD, Ditto PH, Moore KA, Druley JA, Danks JH, Townsend A. Elderly outpatients respond favorably to a physician-initiated advance directive discussion. Journal of the American Board of Family Practice 1993;6(5):473-82. - PubMed
Song 2009 {published data only}
    1. Song MK, Ward SE, Happ MB, Piraino B, Donovan HS, Shields AM, et al. Randomized controlled trial of SPIRIT: an effective approach to preparing African-American dialysis patients and families for end of life. Research in Nursing & Health 2009;32(3):260-73. [DOI: 10.1002/nur.20320] - DOI - PMC - PubMed
Song 2016 {published data only}
    1. Song MK, Ward SE, Lin FC, Hamilton JB, Hanson LC, Hladik GA, et al. Racial differences in outcomes of an advance care planning intervention for dialysis patients and their surrogates. Journal of Palliative Medicine 2016;19:134-42. [DOI: ] - PMC - PubMed
Song 2018 {published data only}
    1. Song MK, Unruh ML, Manatunga A, Plantinga LC, Lea J, Jhamb M, et al. SPIRIT trial: a phase III pragmatic trial of an advance care planning intervention in ESRD. Contemporary Clinical Trials 2018;64:188-94. [DOI: ] - PMC - PubMed
Starks 2016 {published data only}
    1. Starks H, Doorenbos A, Lindhorst T, Bourget E, Aisenberg E, Oman N, et al. The Family Communication Study: a randomized trial of prospective pediatric palliative care consultation, study methodology and perceptions of participation burden. Contemporary Clinical Trials 2016;49:15-20. [DOI: 10.1016/j.cct.2016.05.004] - DOI - PMC - PubMed
Steinhauser 2008 {published data only}
    1. Steinhauser KE, Alexander SC, Byock IR, George LK, Olsen MK, Tulsky JA. Do preparation and life completion discussions improve functioning and quality of life in seriously ill patients? Pilot randomized control trial. Journal of Palliative Medicine 2008;11:1234-40. [DOI: ] - PubMed
Street 2010 {published data only}
    1. Street RL, Slee C, Kalauokalani DK, Dean DE, Tancredi DJ, Kravitz RL. Improving physician-patient communication about cancer pain with a tailored education-coaching intervention. Patient Education and Counseling 2010;80(1):42-7. - PMC - PubMed
Sudore 2010 {published data only}
    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. [DOI: 10.7326/0003-4819-153-4-201008170-00008] - DOI - PMC - PubMed
Sulmasy 2017 {published data only}
    1. Sulmasy DP, Hughes MT, Yenokyan G, Kub J, Terry PB, Astrow AB, et al. The Trial of Ascertaining Individual Preferences for Loved Ones' Role in End-of-Life Decisions (TAILORED) study: a randomized controlled trial to improve surrogate decision making. Journal of Pain and Symptom Management 2017;54:455-65. - PMC - PubMed
Szmuilowicz 2010 {published data only}
    1. Szmuilowicz E, el-Jawahri A, Chiappetta L, Kamdar M, Block S. Improving residents' end-of-life communication skills with a short retreat: a randomized controlled trial. Journal of Palliative Medicine 2010;13(4):439-52. [DOI: 10.1089/jpm.2009.0262] - DOI - PubMed
Temel 2017 {published data only}
    1. Temel JS, Greer JA, El-Jawahri A, Pirl WF, Park ER, Jackson VA, et al. Effects of early integrated palliative care in patients with lung and GI cancer: a randomized clinical trial. Journal of Clinical Oncology 2017;35(8):834-41. [DOI: 10.1200/JCO.2016.70.5046] - DOI - PMC - PubMed
Temel 2020 {published data only}
    1. Temel JS, Moy B, El-Jawahri A, Jackson VA, Kamdar M, Jacobsen J, et al. Randomized trial of a collaborative palliative and oncology care intervention to improve communication about end-of-life care in patients with metastatic breast cancer. Journal of Clinical Oncology 2020;38(15 Supplement):1008-1008. [DOI: 10.1200/JCO.2020.38.15-suppl.1008] - DOI
Tierney 2001 {published data only}
    1. Tierney WM, Dexter PR, Gramelspacher GP, Perkins AJ, Zhou XH, Wolinsky FD. The effect of discussions about advance directives on patients' satisfaction with primary care. Journal of General Internal Medicine 2001;16(1):32-40. - PMC - PubMed
Toles 2018 {published data only}
    1. Toles M, Song MK, Lin FC, Hanson LC. Perceptions of family decision-makers of nursing home residents with advanced dementia regarding the quality of communication around end-of-life care. Journal of the American Medical Directors Association 2018;19(10):879-83. - PMC - PubMed
Trevino 2019 {published data only}
    1. Trevino KM, Maciejewski PK, Johnson Shen M, Prigerson HG, Mohile S, Kamen C, et al. How much time is left? Associations between estimations of patient life-expectancy and quality of life in patients and caregivers. Supportive Care in Cancer 2019;27(7):2487–96. - PMC - PubMed
Tulsky 2011 {published data only}
    1. Tulsky JA, Arnold RM, Alexander SC, Olsen MK, Jeffreys AS, Rodriguez KL, et al. Communication between oncologists and patients with a computer-based training program: a randomized trial. Annals of Internal Medicine 2011;155(9):593-601. [DOI: 10.7326/0003-4819-155-9-201111010-00007] - DOI - PMC - PubMed
Uitdehaag 2012 {published data only}
    1. Uitdehaag MJ, Velden LA, Boer MF, Spaander MC, Steyerberg EW, Kuipers EJ, et al. Recordings of consultations are beneficial in the transition from curative to palliative cancer care: a pilot-study in patients with oesophageal or head and neck cancer. European Journal of Oncology Nursing 2012;16(2):109-14. [DOI: 10.1016/j.ejon.2011.04.006] - DOI - PubMed
Vaccaro 2016 {published data only}
    1. Vaccaro LD, Johnson S, Kiely BE, Clayton J, Clarke S, Beale P, et al. Acceptability of tailored life-expectancy information in patients with advanced cancer participating in an Australian nurse-led ACP RCR. Asia Pacific Journal of Clinical Oncology 2016;12:108. [DOI: 10.13140/RG.2.2.21221.81126] - DOI
Van Laarhoven 2018 {published data only}
    1. Van Laarhoven HWM, Henselmans I, Van Maarschalkerweerd P, De Haes H, Sommeijer DW, Ottevanger PB, et al. Training oncologists and preparing patients for shared decision making about palliative systemic treatment: results from the randomized controlled CHOICE study. Annals of Oncology 2018;29:viii548.
Verhofstede 2012 {published data only}
    1. Verhofstede R, Smets T, Cohen J, Noortgate N, Heide A, Deliens L. Study protocol for a cluster randomized trial to evaluate the influence of the Liverpool care pathway on end-of-life care in acute geriatric hospital wards in Flanders. Palliative Medicine 2012;26(4):548-9. [DOI: 10.1177/0269216312446391] - DOI
Verreault 2018 {published data only}
    1. Verreault R, Arcand M, Misson L, Durand P, Kroger E, Aubin M, et al. Quasi-experimental evaluation of a multifaceted intervention to improve quality of end-of-life care and quality of dying for patients with advanced dementia in long-term care institutions. Palliative Medicine 2018;32:613-21. [DOI: 10.1177/0269216317719588] - DOI - PubMed
Volandes 2009 {published data only}
    1. Volandes AE, Mitchell SL, Gillick MR, Chang Y, Paasche-Orlow MK. Using video images to improve the accuracy of surrogate decision-making: a randomized controlled trial. Journal of the American Medical Directors Association 2009;10:575-80. [DOI: ] - PMC - PubMed
Volandes 2013 {published data only}
    1. Volandes AE, Paasche-Orlow MK, Mitchell SL, El-Jawahri A, Davis AD, Barry MJ, et al. Randomized controlled trial of a video decision support tool for cardiopulmonary resuscitation decision making in advanced cancer. Journal of Clinical Oncology 2013;31(3):380-6. [DOI: 10.1200/JCO.2012.43.9570] - DOI - PMC - PubMed
Von Blanckenburg {published data only}
    1. Von Blanckenburg P, Leppin N, Nagelschmidt K, Seifart C, Rief W. Matters of life and death: an experimental study investigating psychological interventions to encourage the readiness for end-of-life conversations . Psychotherapy and Psychosomatics 2021;90(4):243-54. [DOI: 10.1159/000511199] - DOI - PubMed
von Heymann‐Horan 2019 {published data only}
    1. Heymann-Horan A, Bidstrup PE, Johansen C, Rottmann N, Andersen EAW, Sjøgren P, et al. Dyadic coping in specialized palliative care intervention for patients with advanced cancer and their caregivers: effects and mediation in a randomized controlled trial. Psycho-oncology 2019;28(2):264-70. - PubMed
Voruganti 2017 {published data only}
    1. Voruganti T, Grunfeld E, Jamieson T, Kurahashi AM, Lokuge B, Krzyzanowska MK, et al. My team of care study: a pilot randomized controlled trial of a web-based communication tool for collaborative care in patients with advanced cancer. Journal of Medical Internet Research 2017;19(7):e219. [DOI: 10.2196/jmir.7421] - DOI - PMC - PubMed
Walker 2017 {published data only}
    1. Walker KA, Graham N, Brennan D, Groninger H, Holder RM, Malotte K, et al. PATCH2 program: the creation of a virtual palliative care clinic. Journal of Palliative Medicine 2017;20(4):A20-A21. [DOI: ]
Walker 2017a {published data only}
    1. Walker KA, Graham N, Brennan D, Groninger H, Holder RM, Malotte K, et al. PATCH2 program: the creation of a virtual palliative care clinic. In: Journal of Palliative Medicine. Abstracts from the Center to Advance Palliative Care National Seminar Practical Tools for Making Change; 2016 Oct 26–29; Orlando (Florida). Vol. 20(4). 2017:A20-A21. [DOI: 10.1089/jpm.2017.0051] - DOI - PubMed
Wallen 2012 {published data only}
    1. Wallen GR, Baker K, Stolar M, Miller-Davis C, Ames N, Yates J, et al. Palliative care outcomes in surgical oncology patients with advanced malignancies: a mixed methods approach. Quality of Life Research 2012;21(3):405-15. [DOI: 10.1007/s11136-011-0065-7] - DOI - PMC - PubMed
Waller 2016 {published data only}
    1. Waller A, Proietto A, Ackland S, Clark K, Sanson-Fisher R, Mackenzie L. How can we enhance patient-centered communication at the end of life? Proof-of-concept RCT. Asia-Pacific Journal of Clinical Oncology 2016;12(Supplement 6):26.
Walshe 2016 {published data only}
    1. Walshe C, Preston N, Payne S, Algorta GP, Hill M, Ockenden N. "To wait or not to wait": lessons from running a wait list controlled trial (ELSA) of a volunteer befriending service at the end of life within NHS, hospice and voluntary sectors. Palliative Medicine 2016;30(4):S48-S49. [DOI: ]
Walshe 2016a {published data only}
    1. Walshe C, Dodd S, Hill M, Ockenden N, Payne S, Perez Algorta G, et al. Working with non-clinical staff to deliver research. Lessons from running a wait-list controlled trial (ELSA) of a volunteer befriending service towards the end of life. Palliative Medicine. EAPC2016: Abstracts 2016;30(6):NP283-NP284. [DOI: 10.1177/0269216316646056] - DOI
Wanta Barbara 1998 {published data only}
    1. Wanta Barbara A. The relationship between family communication about death and dying, in terms of Bowen's family systems theory, and physicians' knowledge of preference for cardiopulmonary resuscitation. Dissertation Abstracts International: Section B: Sciences and Engineering 1998;59:1043.
Wendlandt 2019 {published data only}
    1. Wendlandt B, Ceppe A, Choudhury S, Cox CE, Hanson LC, Danis M, et al. Modifiable elements of ICU supportive care and communication are associated with surrogates’ PTSD symptoms. Intensive Care Medicine 2019;45(5):619-26. [DOI: 10.1007/s00134-019-05550-z] - DOI - PMC - PubMed
Wentlandt 2012 {published data only}
    1. Wentlandt K, Burman D, Swami N, Hales S, Rydall A, Rodin G, et al. Preparation for the end of life in patients with advanced cancer and association with communication with professional caregivers. Psycho-oncology 2012;21(8):868-76. [DOI: 10.1002/pon.1995] - DOI - PubMed
Whisenant 2017 {published data only}
    1. Whisenant M, Donaldson G, Wilson A, Mooney K. Cancer caregiver perception of symptom severity change. Supportive Care in Cancer 2017;25(2 Supplement 1):S235. [DOI: ]
White 2018 {published data only}
    1. White DB, Angus DC, Shields A, Pidro C, Paner C, Buddadhumaruk P, et al. A stepped wedge randomized controlled trial of a pragmatic, nurse-led intervention to support surrogate decision makers in ICUs. American Journal of Respiratory and Critical Care Medicine 2018;197:A6186.
White 2018a {published data only}
    1. White DB, Angus DC, Shields AM, Buddadhumaruk P, Pidro C, Paner C, et al. A randomized trial of a family-support intervention in intensive care units. New England Journal of Medicine 2018;378:2365-75. [DOI: ] - PubMed
Wilkinson 2015 {published data only}
    1. Wilkinson AM, Johnson CE, Walker H, Colgan V, Arnet H, Rai T. Evaluating the Liverpool care pathway for care of the terminally ill in rural Australia. Supportive Care in Cancer 2015;23:3173-81. [DOI: ] - PubMed
Wilson 2013 {published data only}
    1. Wilson ME, Akhoundi A, Hinds R, Krupa A, Kashani K. Use of a video to improve patient and surrogate understanding of cardiopulmonary resuscitation and resuscitation preference options in the ICU: a randomized controlled trial. American Journal of Respiratory and Critical Care Medicine 2013;187:A4962. - PubMed
Wilson 2015 {published data only}
    1. Wilson ME, Krupa A, Hinds RF, Litell JM, Swetz KM, Akhoundi A, et al. A video to improve patient and surrogate understanding of cardiopulmonary resuscitation choices in the ICU: a randomized controlled trial. Critical Care Medicine 2015;43:621-9. [DOI: ] - PubMed
Wittenberg‐Lyles 2013 {published data only}
    1. Wittenberg-Lyles E, Goldsmith J, Oliver DP, Demiris G, Kruse RL, Van Stee S. Using medical words with family caregivers. Journal of Palliative Medicine 2013;16(9):1135-9. [DOI: ] - PMC - PubMed
Wolfe 2014 {published data only}
    1. Wolfe J, Orellana L, Cook EF, Ullrich C, Kang T, Geyer JR, et al. Improving the care of children with advanced cancer by using an electronic patient-reported feedback intervention: results from the PediQUEST randomized controlled trial. Journal of Clinical Oncology 2014;32(11):1119-26. [DOI: 10.1200/JCO.2013.51.5981] - DOI - PMC - PubMed
Yilmaz 2020 {unpublished data only}
    1. Yilmaz S. An Examination of Terminally-ill Cancer Patients’ Relational Well-being and Peaceful Acceptance of the Illness [Doctoral dissertation]. Rochester (NY): University of Rochester, 2020.
Yun 2011 {published data only}
    1. Yun YH, Lee MK, Park S, Lee JL, Park J, Choi YS, et al. Use of a decision aid to help caregivers discuss terminal disease status with a family member with cancer: a randomized controlled trial. Journal of Clinical Oncology 2011;29(36):4811-9. [DOI: 10.1200/JCO.2011.35.3870] - DOI - PubMed
Zaider 2012 {published data only}
    1. Zaider T, Kissane D. Therapeutic pathways to improved family communication in palliative care. Asia-Pacific Journal of Clinical Oncology 2012;8:183-4. [DOI: 10.1111/ajco.12029] - DOI
Zaider 2020 {published data only}
    1. Zaider TI, Kissane DW, Schofield E, Li Y, Masterson M. Cancer-related communication during sessions of family therapy at the end of life. Psycho-oncology 2020;29(2):373-80. [DOI: 10.1002/pon.5268] - DOI - PubMed
Zimmerman 2014 {published data only}
    1. Zimmermann C, Swami N, Krzyzanowska M, Hannon B, Leighly N, Oza A, et al. Early palliative care for patients with advanced cancer: a cluster-randomised controlled trial. Lancet 2014;383(9930):1721-30. [DOI: 10.1016/S0140-6736(13)62416-2] - DOI - PubMed

References to studies awaiting assessment

Bouleuc 2021 {published data only}
    1. Bouleuc C, Savignoni A, Chevrier M, Renault-Tessier E, Burnod A, Chvetzoff G, et al. A question prompt list for advanced cancer patients promoting advance care planning: a French randomized trial. Journal of Pain and Symptom Management 2021;61(2):331-41. - PubMed
Krug 2021 {published data only}
    1. Krug K, Bossert J, Deis N, Krisam J, Villalobos M, Siegle A, et al. Effects of an interprofessional communication approach on support needs, quality of life, and mood of patients with advanced lung cancer: a randomized trial. Oncologist 2021;26(8):e1445-e1459. - PMC - PubMed
    1. Siegle A, Villalobos M, Bossert J, Krug K, Hagelskamp L, Krisam J, et al. The Heidelberg Milestones Communication Approach (MCA) for patients with prognosis. Trials 2018;19(1):438. [DOI: 10.1186/s13063-018-2814-1] - DOI - PMC - PubMed

References to ongoing studies

Fujimori 2020 {published data only}
    1. Fujimori M, Sato A, Jinno S, Okusaka T, Yamaguchi T Ikeda M, et al. Integrated communication support program for oncologists, caregivers and patients with rapidly progressing advanced cancer to promote patient-centered communication: J-SUPPORT1904 study protocol for a randomised controlled trial. BMJ Open 2020;10:e036745. [DOI: ] - PMC - PubMed
NCT03770481 {unpublished data only}
    1. NCT03770481. Using a nurse-led communication strategy for surrogates in the intensive care unit. clinicaltrials.gov/ct2/show/NCT03770481 (first received 10 December 2018).
NL5388 {unpublished data only}
    1. NL5388. CHOICE: CHOosing treatment together In Cancer at the End of life. www.trialregister.nl/trial/5388 (first received 15 September 2015).
R000038002 {unpublished data only}
    1. R000038002. A randomized controlled trial of integrated empathic communication support program to promote end of life discussion among rapidly progressive cancer patient, caregiver and physician. center6.umin.ac.jp/cgi-open-bin/ctr_e/ctr_view.cgi?recptno=R000038002 (first received 2 August 2018).

Additional references

ACSQHC 2015
    1. Australian Commission on Safety and Quality in Health Care (ACSQHC). National consensus statement: essential elements for safe and high quality end-of-life-care; 2015. www.safetyandquality.gov.au/publications/national-consensus-statement-es... (accessed prior to 24 July 2018).
ACSQHC 2015b
    1. Australian Commission on Safety and Quality in Health Care (ACQSHC). How should care be delivered at the end of life? A guide for patients and their families and carers; 2015. www.safetyandquality.gov.au/publications-and-resources/resource-library/... (accessed prior to 24 July 2018).
Agar 2017
    1. Agar M, Luckett T, Luscombe G, Phillips J, Beattie E, Pond D, et al. Effects of facilitated family case conferencing for advanced dementia: a cluster randomised clinical trial. PLoS One 2017;12(8):e0181020. [DOI: 10.1371/journal.pone.0181020] - DOI - PMC - PubMed
AIHW 2014
    1. Australian Institute of Health and Welfare (AIHW). Palliative care services in Australia 2014. www.aihw.gov.au/getmedia/035598a4-5dfa-4469-98ab-e29abb7a4940/17634.pdf.... (accessed prior to 24 July 2018).
Alsakson 2012
    1. Alsakson RA, Wyskiel R, Thornton I, Copley C, Shaffer D, Zyra M, et al. Nurse-perceived barriers to effective communication regarding prognosis and optimal end-of-life care for surgical ICU patients: a qualitative exploration. Journal of Palliative Medicine 2012;15(8):910-5. - PMC - PubMed
AMA 2014
    1. Australian Medical Association (AMA). AMA position statement on end of life care and advance care planning; 2014. ama.com.au/sites/default/files/documents/AMA_position_statement_on_end_o... (accessed prior to 24 July 2018).
Anderson 2019
    1. Anderson RJ, Bloch S, Armstrong M, Stone PS, Low JTS. Communication between healthcare professionals and relatives of patients approaching the end-of-life: a systematic review of qualitative evidence. Palliative Medicine 2019;33(8):926-41. - PMC - PubMed
Anselm 2005
    1. Anselm AH, Palda V, Guest CB, McLean RF, Vachon MLS, Kelner M, et al. Barriers to communication regarding end-of-life care: perspectives of care providers. Journal of Critical Care 2005;20(3):214-33. - PubMed
Barnes 2006
    1. Barnes S, Gott M, Payne S, Seamark D, Parker C, Gariballa S, et al. Communication in heart failure: perspectives from older people and primary care professionals. Health and Social Care in the Community 2006;14(6):482-90. - PubMed
Barnes 2012
    1. Barnes S, Gott M, Chady B, Seamark D, Halpin D. Enhancing patient-professional communication about end-of-life issues in life-limiting conditions: a critical review of the literature. Journal of Pain and Symptom Management 2012;44(6):866-79. [DOI: 10.1016/j.jpainsymman.2011.11.009] - DOI - PubMed
Bradford 2021
    1. Bradford N, Rolfe M, Ekberg S, Mitchell G, Beane T, Ferranti K, et al. Family meetings in paediatric palliative care: an integrative review. BMJ Supportive & Palliative Care 2021;11(3):288-95. [DOI: ] - PubMed
Brighton 2016
    1. Brighton LJ, Bristowe K. Communication in palliative care: talking about the end of life, before the end of life. Postgraduate Medical Journal 2016;92:466-70. [DOI: 10.1136/postgradmedj-2015-133368] - DOI - PubMed
CCCG 2016
    1. Cochrane Consumers and Communication Group. Standard protocol text and additional guidance for review authors; 2016. cccrg.cochrane.org/author-resources (accessed prior to 24 July 2018).
Chan 2016
    1. Chan R, Webster J, Bowers A. End-of-life care pathways for improving outcomes in caring for the dying. Cochrane Database of Systematic Reviews 2016, Issue 2. Art. No: CD008006. [DOI: 10.1002/14651858.CD008006.pub4] - DOI - PMC - PubMed
Chochinov 2000
    1. Chochinov HM, Tataryn DJ, Wilson KG, Ennis M, Lander S. Prognostic awareness and the terminally ill. Psychosomatics 2000;41(6):500-4. - PubMed
Clayton 2007a
    1. Clayton J, Hancock K, Butow P, Tattersall M, Currow D. Clinical practice guidelines for communicating prognosis and end-of-life issues with adults in the advanced stages of a life-limiting illness, and their caregivers. Medical Journal of Australia 2007;186(12):S77-S108. - PubMed
Clayton 2007b
    1. Clayton JM, Butow PN, Tattersall MHN, Devine RJ, Simpson JM, Aggarwal G, et al. Randomised controlled trial of a prompt list to help advanced cancer patients and their caregivers to ask questions about prognosis and end of life care. Journal of Clinical Oncology 2007;25(6):715-23. [DOI: 10.1200/JCO.2006.06.7827] - DOI - PubMed
Detering 2010
    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 2010;340:c1345. [DOI: 10.1136/bmj.c1345] - DOI - PMC - PubMed
Ekberg 2019
    1. Ekberg S, Herbert A, Johns K, Tarrant G, Sansone H, Yates P, et al. Finding a way with words: Delphi study to develop a discussion prompt list for paediatric palliative care. Palliative Medicine 2019;34(3):291-9. [DOI: 10.1177/0269216319888988] - DOI - PubMed
Fawole 2012
    1. Fawole OA, Dy SM, Wilson RF, Lau BD, Martinez KA, Apostol CC, et al. A systematic review of communication quality improvement interventions for patients with advanced and serious illness. Journal of General Internal Medicine 2012;28(4):570-7. - PMC - PubMed
Gattellari 1999
    1. Gattellari M, Butow PN, Tattersall MH, Dunn SM, MacLeod CA. Misunderstanding in cancer patients: why shoot the messenger? Annals of Oncology 1999;10(1):39-46. - PubMed
Gott 2009
    1. Gott M, Gardiner C, Small N, Payne S, Seamark D, Barnes S, et al. Barriers to advance care planning in chronic obstructive pulmonary disease. Palliative Medicine 2009;23(7):642-8. - PubMed
GRADEpro GDT [Computer program]
    1. GRADEpro GDT. Version accessed prior to 30 July 2018. Hamilton (ON): McMaster University (developed by Evidence Prime), 2021. Available at gradepro.org.
Gutierrez 2012
    1. Gutierrez KM. Experiences and needs of families regarding prognostic communication in an intensive care unit: supporting families at the end of life. Critical Care Nursing Quarterly 2012;35(3):299-313. - PubMed
Henderson 2017
    1. Henderson A, Young J, Herbert A, Bradford N, Pedersen LA. Preparing pediatric healthcare professionals for end-of-life care discussions: an exploratory study. Journal of Palliative Medicine 2017;20(6):662-6. [DOI: 10.1089/jpm.2016.0367] - DOI - PubMed
Heyland 2009
    1. Heyland DK, Allan DE, Rocker G, Dodek P, Pichora D, Gafni A, et al. Discussing prognosis with patients and their families near the end-of-life: impact on satisfaction with end-of-life care. Open Medicine 2009;3(2):e101-10. - PMC - PubMed
Higgins 2011
    1. 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 training.cochrane.org/handbook.
Hill 2011
    1. Hill S, editor(s). The Knowledgeable Patient: Communication and Participation in Health. Chichester, UK: Wiley Blackwell, 2011. [au.wiley.com/WileyCDA/WileyTitle/productCd-1444337173.html]
Hjelmfors 2020
    1. Hjelmfors L, Wal MHL, Friedrichsen M, Milberg A, Mårtensson J, Sandgren A, et al. Optimizing of a question prompt list to improve communication about the heart failure trajectory in patients, families, and health care professionals. BMC Palliative Care 2020;19:161. [DOI: 10.1186/s12904-020-00665-3] - DOI - PMC - PubMed
IoM 2014
    1. Institute of Medicine. Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. Washington, DC: National Academies Press, 2014. - PubMed
Liberati 2009
    1. Liberati A, Altman DG, Tetzlaff J, Mulrow C, Gøtzsche 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;62(10):e1-34. [DOI: 10.1016/j.jclinepi.2009.06.006] - DOI - PubMed
Lim 2016
    1. Lim CED, Ng RWC, Cheng NCL, Cigolini M, Kwok C, Brennan F. Advance care planning for haemodialysis patients. Cochrane Database of Systematic Reviews 2016, Issue 7. Art. No: CD010737. [DOI: 10.1002/14651858.CD010737.pub2] - DOI - PMC - PubMed
Merner 2019
    1. Merner B, Hill S, Colombo C, Xafis V, Gaulden CM, Graham-Wisener L, et al . Consumers and health providers working in partnership for the promotion of person-centred health services: a co-produced qualitative evidence synthesis.. Cochrane Database of Systematic Reviews 2019, Issue 2. Art. No: CD013274. [DOI: 10.1002/14651858.CD013274] - DOI
Merner 2021
    1. Merner B, Lowe D, Walsh L, Synnot A, Stratil J, Lewin S, et al. Stakeholder involvement in systematic reviews: lessons from Cochrane’s Public Health and Health Systems Network. American Journal of Public Health 2021;111(7):1210-5. - PMC - PubMed
Moore 2018
    1. Moore PM, Rivera S, Bravo-Soto GA, Olivares C, Lawrie TA. Communication skills training for healthcare professionals working with people who have cancer. Cochrane Database of Systematic Reviews 2018, Issue 7. Art. No: CD003751. [DOI: 10.1002/14651858.CD003751.pub4] - DOI - PMC - PubMed
NICE 2017
    1. National Institute for Health and Care Excellence (NICE). End of life care for adults; 2017. www.nice.org.uk/guidance/qs13/resources/end-of-life-care-for-adults-pdf-... (accessed prior to 24 July 2018).
NICE 2019
    1. National Institute for Health and Care Excellence (NICE). End of life care for adults: service delivery; October 2019. Available at www.nice.org.uk/guidance/ng142. - PubMed
Nishikawa 2020
    1. Nishikawa Y, Hiroyama N, Fukahori H, Ota E, Mizuno A, Miyashita M, et al. Advance care planning for adults with heart failure. Cochrane Database of Systematic Reviews 2020, Issue 2. Art. No: CD013022. [DOI: 10.1002/14651858.CD013022.pub2] - DOI - PMC - PubMed
Oczkowski 2016
    1. Oczkowski S, Chung H, Hanvey L, Mbuagbaw L, You J. Communication tools for end-of-life decision-making in ambulatory care settings: a systematic review and meta-analysis. PLOS One 2016;11(4):e0150671. [DOI: 10.1371/journal.pone.0150671] - DOI - PMC - PubMed
Palliative Care Australia 2016
    1. Palliative Care Australia. Position statement: Improving access to quality care at the end of life for Aboriginal and Torres Strait Islander Australians; 2016. Available at palliativecare.org.au/wp-content/uploads/2015/08/PCA-Palliative-care-and....
Review Manager 2020 [Computer program]
    1. Review Manager 5 (RevMan 5). Version 5.4. The Cochrane Collaboration, 2020.
Ryan 2013
    1. Ryan R, Hill S, Prictor M, McKenzie J, Cochrane Consumers and Communication Group. Study quality guide; 2013. cccrg.cochrane.org/authorresources (accessed November 2016).
Sansoni 2014
    1. Sansoni J, Grootemaat P, Duncan C, Samsa P, Eagar K. Systematic literature review on question prompt lists in health care: final report. Centre for Health Service Development, University of Wollongong; 2014 June. [www.safetyandquality.gov.au/sites/default/files/migrated/Question-Prompt...
Schofield 2003
    1. Schofield PE, Butow PN, Thompson JF, Tattersall MH, Beeney LJ, Dunn SM. Psychological responses of patients receiving a diagnosis of cancer. Annals of Oncology 2003;14(1):48-56. - PubMed
Schünemann 2011
    1. Schünemann HJ, Oxman AD, Higgins JPT, Vist GE, Glasziou P, Guyatt GH. Chapter 11: Presenting results and ‘Summary of findings' tables. 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 training.cochrane.org/handbook.
Selman 2007
    1. Selman L, Harding R, Beynon T, Hodson F, Coady E, Hazeldine C, et al. Improving end-of-life care for patients with chronic heart failure: "Let's hope it'll get better, when I know in my heart of hearts it won't". Heart 2007;93(8):963-7. - PMC - PubMed
Shepperd 2021
    1. Shepperd S, Goncalves-Bradley DC, Straus SE, Wee B. Hospital at home: home-based end-of-life care. Cochrane Database of Systematic Reviews 2021, Issue 3. Art. No: CD009231. [DOI: 10.1002/14651858.CD009231.pub3] - DOI - PMC - PubMed
Sinuff 2015
    1. Sinuff T, Dodek P, You JJ, Barwich D, Tayler C, Downar J, et al. Improving end-of-life communication and decision making: the development of a conceptual framework and quality indicators. Journal of Pain and Symptom Management 2015;49(6):1070-9. - PubMed
Steinhauser 2000
    1. Steinhauser KE, Christakis NA, Clipp EC, McNeilly M, McIntyre L, Tulsky JA. Factors considered important at the end of life by patients, family, physicians, and other care providers. JAMA 2000;284(19):2476-82. - PubMed
Sulmasy 2017
    1. Sulmasy DP, Hughes MT, Yenokyan G, Kub J, Terry PB, Astrow AB, et al. The Trial of Ascertaining Individual Preferences for Loved Ones' Role in End-of-life Decisions (TAILORED) study: a randomized controlled trial to improve surrogate decision making. Journal of Pain and Symptom Management 2017;54(4):455-65. [DOI: 10.1016/j.jpainsymman.2017.07.004] - DOI - PMC - PubMed
Thode 2020
    1. Thodé M, Pasman HRW, Vliet LM, Damman OC, Ket JCF, Francke AL, et al. Feasibility and effectiveness of tools that support communication and decision making in life-prolonging treatments for patients in hospital: A systematic review. BMJ Supportive & Palliative Care 2020;0:1-8. [DOI: doi. org/ 10.1136/bmjspcare-2020-002284] - PMC - PubMed
Thompson 2009
    1. Thompson AP. Whanau/Family Meetings in the Paediatric Intensive Care Unit: Content, Process and Family Satisfaction [Masters thesis]. Auckland (New Zealand): Massey University, 2009.
Together for Short Lives 2012
    1. Together for Short Lives. End of life planning series; 2012. www.togetherforshortlives.org.uk (accessed prior to 24 July 2018).
Together for Short Lives 2015
    1. Together for Short Lives. Difficult conversations; 2015. www.togetherforshortlives.org.uk/assets/0001/0096/Difficult_Conversation... (accessed prior to 24 July 2018).
Van der Steen 2021
    1. Van der Steen J, Heck S, Juffermans CCM, Garvelink MM, Achterberg WP, Clayton J, et al. Practitioners’ perceptions of acceptability of a question prompt list about palliative care for advance care planning with people living with dementia and their family caregivers: a mixed-methods evaluation study. BMJ Open 2021;11:e044591. [DOI: 10.1136/bmjopen-2020-044591] - DOI - PMC - PubMed
Voruganti 2017
    1. Voruganti T, Grunfeld E, Makuwaza T, Bender JL. Web-based tools for text-based patient-provider communication in chronic conditions: scoping review. Journal of Medical Internet Research 2017;19(10):e366. [DOI: 10.2196/jmir.7987] - DOI - PMC - PubMed
Walczak 2016
    1. Walczak A, Butow PN, Bua S, Clayton JM. A systematic review of evidence for end-of-life communication interventions: who do they target, how are they structured and do they work? Patient Education and Counseling 2016;99(1):3-16. - PubMed
Walczak 2017
    1. Walczak A, Butow PN, Tattersall MHN, Davidson PM, Young J, Epstein RM, et al. Encouraging early discussion of life expectancy and end-of-life care: a randomised controlled trial of a nurse-led communication support program for patients and caregivers. International Journal of Nursing Studies 2017;67:31-40. [DOI: 10.1016/j.ijnurstu.2016.10.008] - DOI - PubMed
Weeks 1998
    1. Weeks JC, Cook EF, O'Day SJ, Peterson LM, Wenger N, Reding D, et al. Relationship between cancer patients’ predictions of prognosis and their treatment preferences. JAMA 1998;279(21):1709-14. - PubMed
Welch 2010
    1. Welch V, Tugwell P, Petticrew M, De Montigny J, Ueffing E, Kristjansson B, et al. How effects on health equity are assessed in systematic reviews of interventions. Cochrane Database of Systematic Reviews 2010, Issue 12. Art. No: MR000028. [DOI: 10.1002/14651858.MR000028.pub2] - DOI - PMC - PubMed
Wenrich 2001
    1. Wenrich MD, Curtis JR, Shannon SE, Carline JD, Ambrozy DM, Ramsey PG. Communicating with dying patients within the spectrum of medical care from terminal diagnosis to death. Archives of Internal Medicine 2001;161(6):868-74. - PubMed
Wolfe 2020
    1. Wolfe J, Bluebond-Langer M. Paediatric palliative care research has come of age. Palliative Medicine 2020;34(3):259-61. [DOI: 10.1177/0269216320905029] - DOI - PubMed
World Wide Palliative Care Alliance 2014
    1. World Wide Palliative Care Alliance. Global atlas on palliative care at the end of life; 2014. www.thewhpca.org/resources/global-atlas-on-end-of-life-care (accessed prior to 24 July 2018).
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):1655-73. - PMC - PubMed
Zhang 2009
    1. Zhang B, Wright AA, Huskamp HA, Nilsson ME, Maciejewski ML, Earle CC, et al. Health care costs in the last week of life: associations with end-of-life conversations. Archives of Internal Medicine 2009;169(5):480-8. - PMC - PubMed

Publication types

Associated data