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Published in: BMC Palliative Care 1/2015

Open Access 01-12-2015 | Research article

Design of, and enrollment in, the palliative care communication research initiative: a direct-observation cohort study

Authors: Robert Gramling, Elizabeth Gajary-Coots, Susan Stanek, Nathalie Dougoud, Heather Pyke, Marie Thomas, Jenica Cimino, Mechelle Sanders, Stewart C. Alexander, Ronald Epstein, Kevin Fiscella, David Gramling, Susan Ladwig, Wendy Anderson, Stephen Pantilat, Sally A. Norton

Published in: BMC Palliative Care | Issue 1/2015

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Abstract

Background

Understanding the characteristics of communication that foster patient-centered outcomes amid serious illness are essential for the science of palliative care. However, epidemiological cohort studies that directly observe clinical conversations can be challenging to conduct in the natural setting. We describe the successful enrollment, observation and data collection methods of the ongoing Palliative Care Communication Research Initiative (PCCRI).

Methods

The PCCRI is a multi-site cohort study of naturally occurring inpatient palliative care consultations. The 6-month cohort data includes directly observed and audio-recorded palliative care consultations (up to first 3 visits); patient/proxy/clinician self-report questionnaires both before and the day after consultation; post-consultation in-depth interviews; and medical/administrative records.

Results

One hundred fourteen patients or their proxies enrolled in PCCRI during Enrollment Year One (of Three). Seventy percent of eligible patients/proxies were invited to hear about a communication research study (188/269); 60 % of them ultimately enrolled in the PCCRI (114/188), resulting in a 42 % sampling proportion (114/269 eligible). All PC clinicians at study sites were invited to participate; all 45 participated.

Conclusions

Epidemiologic study of patient-family-clinician communication in palliative care settings is feasible and acceptable to patients, proxies and clinicians. We detail the successful PCCRI methods for enrollment, direct observation and data collection for this complex “field” environment.
Literature
1.
go back to reference 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.PubMedCrossRef 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.PubMedCrossRef
2.
go back to reference Glare PA, Sinclair CT. Palliative medicine review: prognostication. J Palliat Med. 2008;11(1):84–103.PubMedCrossRef Glare PA, Sinclair CT. Palliative medicine review: prognostication. J Palliat Med. 2008;11(1):84–103.PubMedCrossRef
3.
go back to reference 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.PubMedCrossRef 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.PubMedCrossRef
4.
go back to reference Butow PN, Dowsett S, Hagerty R, Tattersall MH. Communicating prognosis to patients with metastatic disease: what do they really want to know? Support Care Cancer. 2002;10(2):161–8.PubMedCrossRef Butow PN, Dowsett S, Hagerty R, Tattersall MH. Communicating prognosis to patients with metastatic disease: what do they really want to know? Support Care Cancer. 2002;10(2):161–8.PubMedCrossRef
5.
go back to reference Hagerty RG, Butow PN, Ellis PA, Lobb EA, Pendlebury S, Leighl N, et al. Cancer patient preferences for communication of prognosis in the metastatic setting. J Clin Oncol. 2004;22(9):1721–30.PubMedCrossRef Hagerty RG, Butow PN, Ellis PA, Lobb EA, Pendlebury S, Leighl N, et al. Cancer patient preferences for communication of prognosis in the metastatic setting. J Clin Oncol. 2004;22(9):1721–30.PubMedCrossRef
6.
go back to reference Hagerty RG, Butow PN, Ellis PM, Dimitry S, Tattersall MH. Communicating prognosis in cancer care: a systematic review of the literature. Ann Oncol. 2005;16(7):1005–53.PubMedCrossRef Hagerty RG, Butow PN, Ellis PM, Dimitry S, Tattersall MH. Communicating prognosis in cancer care: a systematic review of the literature. Ann Oncol. 2005;16(7):1005–53.PubMedCrossRef
7.
go back to reference Hagerty RG, Butow PN, Ellis PM, Lobb EA, Pendlebury SC, Leighl N, et al. Communicating with realism and hope: incurable cancer patients' views on the disclosure of prognosis. J Clin Oncol. 2005;23(6):1278–88.PubMedCrossRef Hagerty RG, Butow PN, Ellis PM, Lobb EA, Pendlebury SC, Leighl N, et al. Communicating with realism and hope: incurable cancer patients' views on the disclosure of prognosis. J Clin Oncol. 2005;23(6):1278–88.PubMedCrossRef
8.
go back to reference Hancock K, Clayton JM, Parker SM, der Wal S, Butow PN, Carrick S, et al. Truth-telling in discussing prognosis in advanced life-limiting illnesses: a systematic review. Palliat Med. 2007;21(6):507–17.PubMedCrossRef Hancock K, Clayton JM, Parker SM, der Wal S, Butow PN, Carrick S, et al. Truth-telling in discussing prognosis in advanced life-limiting illnesses: a systematic review. Palliat Med. 2007;21(6):507–17.PubMedCrossRef
9.
go back to reference Hancock K, Clayton JM, Parker SM, Walder S, Butow PN, Carrick S, et al. Discrepant perceptions about end-of-life communication: a systematic review. J Pain Symptom Manage. 2007;34(2):190–200.PubMedCrossRef Hancock K, Clayton JM, Parker SM, Walder S, Butow PN, Carrick S, et al. Discrepant perceptions about end-of-life communication: a systematic review. J Pain Symptom Manage. 2007;34(2):190–200.PubMedCrossRef
10.
go back to reference Parker SM, Clayton JM, Hancock K, Walder S, Butow PN, Carrick S, et al. A systematic review of prognostic/end-of-life communication with adults in the advanced stages of a life-limiting illness: patient/caregiver preferences for the content, style, and timing of information. J Pain Symptom Manage. 2007;34(1):81–93.PubMedCrossRef Parker SM, Clayton JM, Hancock K, Walder S, Butow PN, Carrick S, et al. A systematic review of prognostic/end-of-life communication with adults in the advanced stages of a life-limiting illness: patient/caregiver preferences for the content, style, and timing of information. J Pain Symptom Manage. 2007;34(1):81–93.PubMedCrossRef
11.
go back to reference Clayton JM, Butow PN, Tattersall MH. The needs of terminally ill cancer patients versus those of caregivers for information regarding prognosis and end-of-life issues. Cancer. 2005;103(9):1957–64.PubMedCrossRef Clayton JM, Butow PN, Tattersall MH. The needs of terminally ill cancer patients versus those of caregivers for information regarding prognosis and end-of-life issues. Cancer. 2005;103(9):1957–64.PubMedCrossRef
12.
go back to reference Fallowfield LJ, Jenkins VA, Beveridge HA. Truth may hurt but deceit hurts more: communication in palliative care. Palliat Med. 2002;16(4):297–303.PubMedCrossRef Fallowfield LJ, Jenkins VA, Beveridge HA. Truth may hurt but deceit hurts more: communication in palliative care. Palliat Med. 2002;16(4):297–303.PubMedCrossRef
13.
go back to reference Christakis NA. Prognostication and Bioethics. Daedalus. 1999;128(4):197–214.PubMed Christakis NA. Prognostication and Bioethics. Daedalus. 1999;128(4):197–214.PubMed
14.
go back to reference Christakis NA, Iwashyna TJ. Attitude and self-reported practice regarding prognostication in a national sample of internists. Arch Intern Med. 1998;158(21):2389–95.PubMedCrossRef Christakis NA, Iwashyna TJ. Attitude and self-reported practice regarding prognostication in a national sample of internists. Arch Intern Med. 1998;158(21):2389–95.PubMedCrossRef
15.
go back to reference Gramling R, Carroll T, Epstein R. Prognostication in Advanced Illness. In: Goldstein N, Morrison RS, editors. Evidence-Based Practice of Palliative Medicine. Amsterdam: Elsevier Press; 2013. Gramling R, Carroll T, Epstein R. Prognostication in Advanced Illness. In: Goldstein N, Morrison RS, editors. Evidence-Based Practice of Palliative Medicine. Amsterdam: Elsevier Press; 2013.
16.
go back to reference Lamont EB, Christakis NA. Complexities in prognostication in advanced cancer: "to help them live their lives the way they want to". JAMA. 2003;290(1):98–104.PubMedCrossRef Lamont EB, Christakis NA. Complexities in prognostication in advanced cancer: "to help them live their lives the way they want to". JAMA. 2003;290(1):98–104.PubMedCrossRef
17.
go back to reference White DB, Engelberg RA, Wenrich MD, Lo B, Curtis JR. Prognostication during physician-family discussions about limiting life support in intensive care units. Crit Care Med. 2007;35(2):442–8.PubMedCrossRef White DB, Engelberg RA, Wenrich MD, Lo B, Curtis JR. Prognostication during physician-family discussions about limiting life support in intensive care units. Crit Care Med. 2007;35(2):442–8.PubMedCrossRef
18.
go back to reference Bernacki RE, Block SD. American College of Physicians High Value Care Task F: Communication about serious illness care goals: a review and synthesis of best practices. JAMA. 2014;174(12):1994–2003. Bernacki RE, Block SD. American College of Physicians High Value Care Task F: Communication about serious illness care goals: a review and synthesis of best practices. JAMA. 2014;174(12):1994–2003.
19.
go back to reference Lamont EB, Christakis NA. Prognostic disclosure to patients with cancer near the end of life. Ann Intern Med. 2001;134(12):1096–105.PubMedCrossRef Lamont EB, Christakis NA. Prognostic disclosure to patients with cancer near the end of life. Ann Intern Med. 2001;134(12):1096–105.PubMedCrossRef
20.
go back to reference Gramling R, Norton S, Ladwig S, Winters P, Metzger M, Quill T, et al. Latent classes of prognosis conversations in palliative care: a mixed-methods study. J Palliat Med. 2013;16(6):653–60.PubMedPubMedCentralCrossRef Gramling R, Norton S, Ladwig S, Winters P, Metzger M, Quill T, et al. Latent classes of prognosis conversations in palliative care: a mixed-methods study. J Palliat Med. 2013;16(6):653–60.PubMedPubMedCentralCrossRef
21.
go back to reference Gramling R, Norton SA, Ladwig S, Metzger M, DeLuca J, Gramling D, et al. Direct observation of prognosis communication in palliative care: a descriptive study. J Pain Symptom Manage. 2013;45(2):202–12.PubMedCrossRef Gramling R, Norton SA, Ladwig S, Metzger M, DeLuca J, Gramling D, et al. Direct observation of prognosis communication in palliative care: a descriptive study. J Pain Symptom Manage. 2013;45(2):202–12.PubMedCrossRef
22.
go back to reference Norton SA, Metzger M, DeLuca J, Alexander SC, Quill TE, Gramling R. Palliative care communication: linking patients' prognoses, values, and goals of care. Res Nurs Health. 2013;36(6):582–90.PubMedCrossRef Norton SA, Metzger M, DeLuca J, Alexander SC, Quill TE, Gramling R. Palliative care communication: linking patients' prognoses, values, and goals of care. Res Nurs Health. 2013;36(6):582–90.PubMedCrossRef
23.
go back to reference Temel JS, Greer JA, Admane S, Gallagher ER, Jackson VA, Lynch TJ, et al. Longitudinal perceptions of prognosis and goals of therapy in patients with metastatic non-small-cell lung cancer: results of a randomized study of early palliative care. J Clin Oncol. 2011;29(17):2319–26.PubMedCrossRef Temel JS, Greer JA, Admane S, Gallagher ER, Jackson VA, Lynch TJ, et al. Longitudinal perceptions of prognosis and goals of therapy in patients with metastatic non-small-cell lung cancer: results of a randomized study of early palliative care. J Clin Oncol. 2011;29(17):2319–26.PubMedCrossRef
24.
go back to reference Alexander SC, Ladwig S, Norton SA, Gramling D, Davis JK, Metzger M, et al. Emotional distress and compassionate responses in palliative care decision-making consultations. J Palliat Med. 2014;17(5):579–84.PubMedPubMedCentralCrossRef Alexander SC, Ladwig S, Norton SA, Gramling D, Davis JK, Metzger M, et al. Emotional distress and compassionate responses in palliative care decision-making consultations. J Palliat Med. 2014;17(5):579–84.PubMedPubMedCentralCrossRef
25.
go back to reference Temel JS, Greer JA, Muzikansky A, Gallagher ER, Admane S, Jackson VA, et al. Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med. 2010;363(8):733–42.PubMedCrossRef Temel JS, Greer JA, Muzikansky A, Gallagher ER, Admane S, Jackson VA, et al. Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med. 2010;363(8):733–42.PubMedCrossRef
26.
go back to reference Bakitas M, Lyons KD, Hegel MT, Balan S, Brokaw FC, Seville J, et al. Effects of a palliative care intervention on clinical outcomes in patients with advanced cancer: the Project ENABLE II randomized controlled trial. JAMA. 2009;302(7):741–9.PubMedPubMedCentralCrossRef Bakitas M, Lyons KD, Hegel MT, Balan S, Brokaw FC, Seville J, et al. Effects of a palliative care intervention on clinical outcomes in patients with advanced cancer: the Project ENABLE II randomized controlled trial. JAMA. 2009;302(7):741–9.PubMedPubMedCentralCrossRef
27.
go back to reference El-Jawahri A, Greer JA, Temel JS. Does palliative care improve outcomes for patients with incurable illness? A review of the evidence. J Support Oncol. 2011;9(3):87–94.PubMedCrossRef El-Jawahri A, Greer JA, Temel JS. Does palliative care improve outcomes for patients with incurable illness? A review of the evidence. J Support Oncol. 2011;9(3):87–94.PubMedCrossRef
28.
go back to reference Wittenberg-Lyles EM, Goldsmith J, Sanchez-Reilly S, Ragan SL. Communicating a terminal prognosis in a palliative care setting: deficiencies in current communication training protocols. Soc Sci Med. 2008;66(11):2356–65.PubMedCrossRef Wittenberg-Lyles EM, Goldsmith J, Sanchez-Reilly S, Ragan SL. Communicating a terminal prognosis in a palliative care setting: deficiencies in current communication training protocols. Soc Sci Med. 2008;66(11):2356–65.PubMedCrossRef
29.
go back to reference Smith AK, Thai JN, Bakitas MA, Meier DE, Spragens LH, Temel JS, et al. The diverse landscape of palliative care clinics. J Palliat Med. 2013;16(6):661–8.PubMedPubMedCentralCrossRef Smith AK, Thai JN, Bakitas MA, Meier DE, Spragens LH, Temel JS, et al. The diverse landscape of palliative care clinics. J Palliat Med. 2013;16(6):661–8.PubMedPubMedCentralCrossRef
30.
go back to reference Meier DE, Beresford L. Outpatient clinics are a new frontier for palliative care. J Palliat Med. 2008;11(6):823–8.PubMedCrossRef Meier DE, Beresford L. Outpatient clinics are a new frontier for palliative care. J Palliat Med. 2008;11(6):823–8.PubMedCrossRef
31.
go back to reference National Priorities and Goals: Aligning Our Efforts to Transform America's Healthcare. In: National Quality Forum: 2008; Washington, D.C.; 2008. National Priorities and Goals: Aligning Our Efforts to Transform America's Healthcare. In: National Quality Forum: 2008; Washington, D.C.; 2008.
32.
go back to reference America ICoQoHCi. Crossing the quality chasm: a new health system for the 21st century. Washington D.C.: National Academy Press; 2001. America ICoQoHCi. Crossing the quality chasm: a new health system for the 21st century. Washington D.C.: National Academy Press; 2001.
33.
go back to reference Epstein RM, Fiscella K, Lesser CS, Stange KC. Why the nation needs a policy push on patient-centered health care. Health Aff (Millwood). 2010;29(8):1489–95.CrossRef Epstein RM, Fiscella K, Lesser CS, Stange KC. Why the nation needs a policy push on patient-centered health care. Health Aff (Millwood). 2010;29(8):1489–95.CrossRef
34.
35.
go back to reference Epstein RM, Campbell TL, Cohen-Cole SA, McWhinney IR, Smilkstein G. Perspectives on patient-doctor communication. J Fam Pract. 1993;37(4):377–88.PubMed Epstein RM, Campbell TL, Cohen-Cole SA, McWhinney IR, Smilkstein G. Perspectives on patient-doctor communication. J Fam Pract. 1993;37(4):377–88.PubMed
36.
go back to reference Epstein RM, Franks P, Fiscella K, Shields CG, Meldrum SC, Kravitz RL, et al. Measuring patient-centered communication in patient-physician consultations: theoretical and practical issues. Soc Sci Med. 2005;61(7):1516–28.PubMedCrossRef Epstein RM, Franks P, Fiscella K, Shields CG, Meldrum SC, Kravitz RL, et al. Measuring patient-centered communication in patient-physician consultations: theoretical and practical issues. Soc Sci Med. 2005;61(7):1516–28.PubMedCrossRef
37.
go back to reference Epstein RM, Street RL. Patient-Centered Communication in Cancer Care. National Institutes of Health: Bethesda, MD; 2007. Epstein RM, Street RL. Patient-Centered Communication in Cancer Care. National Institutes of Health: Bethesda, MD; 2007.
38.
go back to reference McCormack LA, Treiman K, Rupert D, Williams-Piehota P, Nadler E, Arora NK, et al. Measuring patient-centered communication in cancer care: a literature review and the development of a systematic approach. Soc Sci Med. 2011;72(7):1085–95.PubMedCrossRef McCormack LA, Treiman K, Rupert D, Williams-Piehota P, Nadler E, Arora NK, et al. Measuring patient-centered communication in cancer care: a literature review and the development of a systematic approach. Soc Sci Med. 2011;72(7):1085–95.PubMedCrossRef
40.
go back to reference Walling AM, Asch SM, Lorenz KA, Roth CP, Barry T, Kahn KL, et al. The quality of care provided to hospitalized patients at the end of life. Arch Intern Med. 2010;170(12):1057–63.PubMedPubMedCentralCrossRef Walling AM, Asch SM, Lorenz KA, Roth CP, Barry T, Kahn KL, et al. The quality of care provided to hospitalized patients at the end of life. Arch Intern Med. 2010;170(12):1057–63.PubMedPubMedCentralCrossRef
41.
go back to reference Walling AM, Ettner SL, Barry T, Yamamoto MC, Wenger NS. Missed opportunities: use of an end-of-life symptom management order protocol among inpatients dying expected deaths. J Palliat Med. 2011;14(4):407–12.PubMedPubMedCentralCrossRef Walling AM, Ettner SL, Barry T, Yamamoto MC, Wenger NS. Missed opportunities: use of an end-of-life symptom management order protocol among inpatients dying expected deaths. J Palliat Med. 2011;14(4):407–12.PubMedPubMedCentralCrossRef
42.
go back to reference Bronfort G, Bouter LM. Responsiveness of general health status in chronic low back pain: a comparison of the COOP charts and the SF-36. Pain. 1999;83(2):201–9.PubMedCrossRef Bronfort G, Bouter LM. Responsiveness of general health status in chronic low back pain: a comparison of the COOP charts and the SF-36. Pain. 1999;83(2):201–9.PubMedCrossRef
43.
go back to reference Nelson EC, Landgraf JM, Hays RD, Wasson JH, Kirk JW. The functional status of patients. How can it be measured in physicians' offices? Med Care. 1990;28(12):1111–26.PubMedCrossRef Nelson EC, Landgraf JM, Hays RD, Wasson JH, Kirk JW. The functional status of patients. How can it be measured in physicians' offices? Med Care. 1990;28(12):1111–26.PubMedCrossRef
44.
go back to reference Nelson EC, Wasson JH, Johnson DJ, Hays RD. Dartmouth COOP Functional Health Assessment Charts: Brief Measures for Clinical Practice. In: Spilker B, editor. Quality of Life and Pharmacoeconomics in Clinical Trials. Philadelphia: Lippincot-Raven; 1996. p. 161–8. Nelson EC, Wasson JH, Johnson DJ, Hays RD. Dartmouth COOP Functional Health Assessment Charts: Brief Measures for Clinical Practice. In: Spilker B, editor. Quality of Life and Pharmacoeconomics in Clinical Trials. Philadelphia: Lippincot-Raven; 1996. p. 161–8.
45.
go back to reference Beach MC, Roter D, Korthuis PT, Epstein RM, Sharp V, Ratanawongsa N, et al. A multicenter study of physician mindfulness and health care quality. Ann Fam Med. 2013;11(5):421–8.PubMedPubMedCentralCrossRef Beach MC, Roter D, Korthuis PT, Epstein RM, Sharp V, Ratanawongsa N, et al. A multicenter study of physician mindfulness and health care quality. Ann Fam Med. 2013;11(5):421–8.PubMedPubMedCentralCrossRef
46.
go back to reference Carlson LE, Brown KW. Validation of the Mindful Attention Awareness Scale in a cancer population. J Psychosom Res. 2005;58(1):29–33.PubMedCrossRef Carlson LE, Brown KW. Validation of the Mindful Attention Awareness Scale in a cancer population. J Psychosom Res. 2005;58(1):29–33.PubMedCrossRef
47.
go back to reference Ellington L, Reblin M, Berry P, Giese-Davis J, Clayton MF. Reflective research: supporting researchers engaged in analyzing end-of-life communication. Patient Educ Couns. 2013;91(1):126–8.PubMedCrossRef Ellington L, Reblin M, Berry P, Giese-Davis J, Clayton MF. Reflective research: supporting researchers engaged in analyzing end-of-life communication. Patient Educ Couns. 2013;91(1):126–8.PubMedCrossRef
48.
go back to reference Olajide O, Hanson L, Usher BM, Qaqish BF, Schwartz R, Bernard S. Validation of the palliative performance scale in the acute tertiary care hospital setting. J Palliat Med. 2007;10(1):111–7.PubMedCrossRef Olajide O, Hanson L, Usher BM, Qaqish BF, Schwartz R, Bernard S. Validation of the palliative performance scale in the acute tertiary care hospital setting. J Palliat Med. 2007;10(1):111–7.PubMedCrossRef
49.
go back to reference 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.PubMedPubMedCentralCrossRef 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.PubMedPubMedCentralCrossRef
50.
go back to reference Goodman DC, Fisher ES, Chang C, Morden NE, Jacobson JO, Murray K, et al. Quality of end-of-life cancer care for medicare beneficiaries. Trustees of Dartmouth College: Lebanon, NH; 2010. Goodman DC, Fisher ES, Chang C, Morden NE, Jacobson JO, Murray K, et al. Quality of end-of-life cancer care for medicare beneficiaries. Trustees of Dartmouth College: Lebanon, NH; 2010.
51.
52.
go back to reference Mercer LM, Tanabe P, Pang PS, Gisondi MA, Courtney DM, Engel KG, et al. Patient perspectives on communication with the medical team: pilot study using the Communication Assessment Tool-Team (CAT-T). Patient Educ Couns. 2008;73(2):220–3.PubMedCrossRef Mercer LM, Tanabe P, Pang PS, Gisondi MA, Courtney DM, Engel KG, et al. Patient perspectives on communication with the medical team: pilot study using the Communication Assessment Tool-Team (CAT-T). Patient Educ Couns. 2008;73(2):220–3.PubMedCrossRef
53.
go back to reference Wittink MN, Morales KH, Meoni LA, Ford DE, Wang NY, Klag MJ, et al. Stability of preferences for end-of-life treatment after 3 years of follow-up: the Johns Hopkins Precursors Study. Arch Intern Med. 2008;168(19):2125–30.PubMedPubMedCentralCrossRef Wittink MN, Morales KH, Meoni LA, Ford DE, Wang NY, Klag MJ, et al. Stability of preferences for end-of-life treatment after 3 years of follow-up: the Johns Hopkins Precursors Study. Arch Intern Med. 2008;168(19):2125–30.PubMedPubMedCentralCrossRef
54.
go back to reference Epstein RM, Gramling RE. What is shared in shared decision making? Complex decisions when the evidence is unclear. Med Care Res Rev. 2013;70(1 Suppl):94S–112S.PubMedCrossRef Epstein RM, Gramling RE. What is shared in shared decision making? Complex decisions when the evidence is unclear. Med Care Res Rev. 2013;70(1 Suppl):94S–112S.PubMedCrossRef
55.
go back to reference Clayton JM, Butow PN, Arnold RM, Tattersall MH. Fostering coping and nurturing hope when discussing the future with terminally ill cancer patients and their caregivers. Cancer. 2005;103(9):1965–75.PubMedCrossRef Clayton JM, Butow PN, Arnold RM, Tattersall MH. Fostering coping and nurturing hope when discussing the future with terminally ill cancer patients and their caregivers. Cancer. 2005;103(9):1965–75.PubMedCrossRef
56.
go back to reference MIles MB, Huberman AM. Qualitative Data Analysis. 2nd ed. Newbury Park, CA: Sage; 1994. MIles MB, Huberman AM. Qualitative Data Analysis. 2nd ed. Newbury Park, CA: Sage; 1994.
57.
go back to reference Dy SM, Kiley KB, Ast K, Lupu D, Norton SA, McMillan SC, et al. Measuring what matters: top-ranked quality indicators for hospice and palliative care from the american academy of hospice and palliative medicine and hospice and palliative nurses association. J Pain Symptom Manage. 2015;49(4):773–81.PubMedCrossRef Dy SM, Kiley KB, Ast K, Lupu D, Norton SA, McMillan SC, et al. Measuring what matters: top-ranked quality indicators for hospice and palliative care from the american academy of hospice and palliative medicine and hospice and palliative nurses association. J Pain Symptom Manage. 2015;49(4):773–81.PubMedCrossRef
58.
go back to reference Hirschberg J, Manning CD. Advances in natural language processing. Science. 2015;349(6245):261–6.PubMedCrossRef Hirschberg J, Manning CD. Advances in natural language processing. Science. 2015;349(6245):261–6.PubMedCrossRef
59.
go back to reference Institute of Medicine. Dying in America: Improving Quality and Honoring Individual Preferences Near End of Life. In. Washington, D.C.; 2014. Institute of Medicine. Dying in America: Improving Quality and Honoring Individual Preferences Near End of Life. In. Washington, D.C.; 2014.
60.
go back to reference Larson CO, Hays RD, Nelson EC. Do the pictures influence scores on the Dartmouth COOP Charts? Qual Life Res. 1992;1(4):247–9.PubMedCrossRef Larson CO, Hays RD, Nelson EC. Do the pictures influence scores on the Dartmouth COOP Charts? Qual Life Res. 1992;1(4):247–9.PubMedCrossRef
61.
go back to reference Cohen SR, Mount BM, Strobel MG, Bui F. The McGill Quality of Life Questionnaire: a measure of quality of life appropriate for people with advanced disease. A preliminary study of validity and acceptability. Palliat Med. 1995;9(3):207–19.PubMedCrossRef Cohen SR, Mount BM, Strobel MG, Bui F. The McGill Quality of Life Questionnaire: a measure of quality of life appropriate for people with advanced disease. A preliminary study of validity and acceptability. Palliat Med. 1995;9(3):207–19.PubMedCrossRef
62.
go back to reference Cohen SR, Mount BM, Bruera E, Provost M, Rowe J, Tong K. Validity of the McGill Quality of Life Questionnaire in the palliative care setting: a multi-centre Canadian study demonstrating the importance of the existential domain. Palliat Med. 1997;11(1):3–20.PubMedCrossRef Cohen SR, Mount BM, Bruera E, Provost M, Rowe J, Tong K. Validity of the McGill Quality of Life Questionnaire in the palliative care setting: a multi-centre Canadian study demonstrating the importance of the existential domain. Palliat Med. 1997;11(1):3–20.PubMedCrossRef
63.
go back to reference Steinhauser KE, Clipp EC, Bosworth HB, McNeilly M, Christakis NA, Voils CI, et al. Measuring quality of life at the end of life: validation of the QUAL-E. Palliat Support Care. 2004;2(1):3–14.PubMedCrossRef Steinhauser KE, Clipp EC, Bosworth HB, McNeilly M, Christakis NA, Voils CI, et al. Measuring quality of life at the end of life: validation of the QUAL-E. Palliat Support Care. 2004;2(1):3–14.PubMedCrossRef
64.
go back to reference Steinhauser KE, Voils CI, Clipp EC, Bosworth HB, Christakis NA, Tulsky JA. "Are you at peace?": one item to probe spiritual concerns at the end of life. Arch Intern Med. 2006;166(1):101–5.PubMedCrossRef Steinhauser KE, Voils CI, Clipp EC, Bosworth HB, Christakis NA, Tulsky JA. "Are you at peace?": one item to probe spiritual concerns at the end of life. Arch Intern Med. 2006;166(1):101–5.PubMedCrossRef
65.
go back to reference Williams GC, Grow VM, Freedman ZR, Ryan RM, Deci EL. Motivational predictors of weight loss and weight-loss maintenance. J Pers Soc Psychol. 1996;70(1):115–26.PubMedCrossRef Williams GC, Grow VM, Freedman ZR, Ryan RM, Deci EL. Motivational predictors of weight loss and weight-loss maintenance. J Pers Soc Psychol. 1996;70(1):115–26.PubMedCrossRef
66.
go back to reference Stewart M, Brown JB, Donner A, McWhinney IR, Oates J, Weston WW, et al. The impact of patient-centered care on outcomes. J Fam Pract. 2000;49(9):796–804.PubMed Stewart M, Brown JB, Donner A, McWhinney IR, Oates J, Weston WW, et al. The impact of patient-centered care on outcomes. J Fam Pract. 2000;49(9):796–804.PubMed
67.
go back to reference Scheier MF, Carver CS. Optimism, coping, and health: assessment and implications of generalized outcome expectancies. Health Psychol. 1985;4(3):219–47.PubMedCrossRef Scheier MF, Carver CS. Optimism, coping, and health: assessment and implications of generalized outcome expectancies. Health Psychol. 1985;4(3):219–47.PubMedCrossRef
68.
go back to reference Han PK, Klein WM, Killam B, Lehman T, Massett H, Freedman AN. Representing randomness in the communication of individualized cancer risk estimates: effects on cancer risk perceptions, worry, and subjective uncertainty about risk. Patient Educ Couns. 2012;86(1):106–13.PubMedCrossRef Han PK, Klein WM, Killam B, Lehman T, Massett H, Freedman AN. Representing randomness in the communication of individualized cancer risk estimates: effects on cancer risk perceptions, worry, and subjective uncertainty about risk. Patient Educ Couns. 2012;86(1):106–13.PubMedCrossRef
69.
go back to reference Balboni TA, Balboni M, Enzinger AC, Gallivan K, Paulk ME, Wright A, et al. Provision of spiritual support to patients with advanced cancer by religious communities and associations with medical care at the end of life. JAMA. 2013;173(12):1109–17. Balboni TA, Balboni M, Enzinger AC, Gallivan K, Paulk ME, Wright A, et al. Provision of spiritual support to patients with advanced cancer by religious communities and associations with medical care at the end of life. JAMA. 2013;173(12):1109–17.
70.
go back to reference Diefenbach MA, Weinstein ND, O'Reilly J. Scales for assessing perceptions of health hazard susceptibility. Health Educ Res. 1993;8(2):181–92.PubMedCrossRef Diefenbach MA, Weinstein ND, O'Reilly J. Scales for assessing perceptions of health hazard susceptibility. Health Educ Res. 1993;8(2):181–92.PubMedCrossRef
71.
go back to reference 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). The SUPPORT Principal Investigators. JAMA 1995;274(20):1591–98. 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). The SUPPORT Principal Investigators. JAMA 1995;274(20):1591–98.
72.
go back to reference Gramling R, Sanders M, Ladwig S, Norton S, Epstein R, Alexander S. Goal Communication in Palliative Care Decision-Making Conversations. J Pain Symptom Manage 2015, May 27 [epub ahead of print]. Gramling R, Sanders M, Ladwig S, Norton S, Epstein R, Alexander S. Goal Communication in Palliative Care Decision-Making Conversations. J Pain Symptom Manage 2015, May 27 [epub ahead of print].
Metadata
Title
Design of, and enrollment in, the palliative care communication research initiative: a direct-observation cohort study
Authors
Robert Gramling
Elizabeth Gajary-Coots
Susan Stanek
Nathalie Dougoud
Heather Pyke
Marie Thomas
Jenica Cimino
Mechelle Sanders
Stewart C. Alexander
Ronald Epstein
Kevin Fiscella
David Gramling
Susan Ladwig
Wendy Anderson
Stephen Pantilat
Sally A. Norton
Publication date
01-12-2015
Publisher
BioMed Central
Published in
BMC Palliative Care / Issue 1/2015
Electronic ISSN: 1472-684X
DOI
https://doi.org/10.1186/s12904-015-0037-8

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