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Barriers to Goals of Care Discussions With Patients Who Have Advanced Heart Failure: Results of a Multicenter Survey of Hospital-Based Cardiology Clinicians

      Highlights

      • Clinicians see patient/family factors as key barriers to goals-of-care discussions.
      • Clinicians should expect these conversations to be difficult for patients/families.
      • Clinicians need more education and tools to enable them to have these conversations.
      • There is opportunity for an interprofessional approach to goals-of-care discussions.

      Abstract

      Background

      Conversations about goals of care in hospital are important to patients who have advanced heart failure (HF).

      Methods

      We conducted a multicenter survey of cardiology nurses, fellows, and cardiologists at 8 Canadian teaching hospitals. The primary outcome was the importance of barriers to goals-of-care discussions in hospital (1 = extremely unimportant; 7 = extremely important). We also elicited perspectives on roles of different practitioners in having these conversations.

      Results

      Questionnaires were returned by 770/1024 (75.2%) eligible clinicians. The most important perceived barriers were: family members' and patients' difficulty in accepting a poor prognosis (mean [SD] score 5.9 [1.1] and 5.7 [1.2], respectively), family members' and patients' lack of understanding about the limitations and harms of life-sustaining treatments (5.8 [1.1] and 5.7 [1.2], respectively), and lack of agreement among family members about goals of care (5.8 [1.2]). Interprofessional team members were viewed as having different but important roles in goals-of-care discussions.

      Conclusions

      Cardiology clinicians perceive family and patient-related factors as the most important barriers to goals-of-care discussions in hospital. Many members of the interprofessional team were viewed as having important roles in addressing goals of care. These findings can inform the design of future interventions to improve communication about goals of care in advanced HF.

      Key Words

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      References

        • Braunwald E.
        The war against heart failure: the Lancet lecture.
        Lancet. 2015; 385: 812-824
        • Yancy C.W.
        • Jessup M.
        • Bozkurt B.
        • Butler J.
        • Casey Jr., D.E.
        • Drazner M.H.
        • et al.
        2013 ACCF/AHA guideline for the management of heart failurea report of the American College of Cardiology Foundation/American Heart Association Task Force on Practice Guidelines.
        J Am Coll Cardiol. 2013; 62: e147-e239
        • Hershberger R.E.
        • Nauman D.
        • Walker T.L.
        • Dutton D.
        • Burgess D.
        Care processes and clinical outcomes of continuous outpatient support with inotropes (COSI) in patients with refractory endstage heart failure.
        J Card Fail. 2003; 9: 180-187
        • Strachan P.H.
        • Ross H.
        • Rocker G.M.
        • Dodek P.M.
        • Heyland D.K.
        Mind the gap: opportunities for improving end-of-life care for patients with advanced heart failure.
        Can J Cardiol. 2009; 25: 635-640
        • Heyland D.K.
        • Dodek P.
        • Rocker G.
        • Groll D.
        • Gafni A.
        • Pichora D.
        • et al.
        What matters most in end-of-life care: perceptions of seriously ill patients and their family members.
        CMAJ. 2006; 174: 627-633
        • Somogyi-Zalud E.
        • Zhong Z.
        • Hamel M.B.
        • Lynn J.
        The use of life-sustaining treatments in hospitalized persons aged 80 and older.
        J Am Geriatr Soc. 2002; 50: 930-934
        • Wright A.A.
        • Zhang B.
        • Ray A.
        • Mack J.W.
        • 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: 1665-1673
        • Unroe K.T.
        • Greiner M.A.
        • Hernandez A.F.
        • Whellan D.J.
        • Kaul P.
        • Schulman K.A.
        • et al.
        Resource use in the last 6 months of life among medicare beneficiaries with heart failure, 2000–2007.
        Arch Intern Med. 2011; 171: 196-203
        • Allen L.A.
        • Stevenson L.W.
        • Grady K.L.
        • Goldstein N.E.
        • Matlock D.D.
        • Arnold R.M.
        • et al.
        Decision making in advanced heart failure: a scientific statement from the American Heart Association.
        Circulation. 2012; 125: 1928-1952
        • Jaarsma T.
        • Beattie J.M.
        • Ryder M.
        • Rutten F.H.
        • McDonagh T.
        • Mohacsi P.
        • et al.
        Palliative care in heart failure: a position statement from the palliative care workshop of the Heart Failure Association of the European Society of Cardiology.
        Eur J Heart Fail. 2009; 11: 433-443
        • McKelvie R.S.
        • Moe G.W.
        • Ezekowitz J.A.
        • Heckman G.A.
        • Costigan J.
        • Ducharme A.
        • et al.
        The 2012 Canadian Cardiovascular Society heart failure management guidelines update: focus on acute and chronic heart failure.
        Can J Cardiol. 2013; 29: 168-181
        • Sinuff T.
        • Dodek P.
        • You J.J.
        • 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.
        J Pain Symptom Manage. 2015; 49: 1070-1080
        • Sudore R.L.
        • Fried T.R.
        Redefining the “planning” in advance care planning: preparing for end-of-life decision making.
        Ann Intern Med. 2010; 153: 256-261
        • Heyland D.K.
        • Cook D.J.
        • Rocker G.M.
        • Dodek P.M.
        • Kutsogiannis D.J.
        • Skrobik Y.
        • et al.
        Defining priorities for improving end-of-life care in Canada.
        CMAJ. 2010; 182: E747-E752
        • Heyland D.K.
        • Barwich D.
        • Pichora D.
        • Dodek P.
        • Lamontagne F.
        • You J.J.
        • et al.
        Failure to engage seriously ill hospitalized patients and their families in advance care planning: results of a multicenter prospective study.
        JAMA Intern Med. 2013; 173: 778-787
        • Aleksova N.
        • Demers C.
        • Strachan P.H.
        • MacIver J.
        • Downar J.
        • Fowler R.
        • et al.
        Barriers to goals of care discussions with hospitalized patients with advanced heart failure: feasibility and performance of a novel questionnaire.
        ESC Heart Fail. 2016; 3: 245-252
        • You J.J.
        • Downar J.
        • Fowler R.A.
        • Lamontagne F.
        • Ma I.W.
        • Jayaraman D.
        • et al.
        Barriers to goals of care discussions with seriously ill hospitalized patients and their families: a multicenter survey of clinicians.
        JAMA Intern Med. 2015; 175: 549-556
        • Heyland D.K.
        • Tranmer J.
        • Feldman-Stewart D.
        End-of-life decision making in the seriously ill hospitalized patient: an organizing framework and results of a preliminary study.
        J Palliat Care. 2000; 16: S31-S39
        • Stacey D.
        • Legare F.
        • Pouliot S.
        • Kryworuchko J.
        • Dunn S.
        Shared decision making models to inform an interprofessional perspective on decision making: a theory analysis.
        Patient Educ Couns. 2010; 80: 164-172
        • Dillman D.A.
        Mail and internet surveys: the tailored design method.
        Wiley, New York, NY2000
        • Schaefer D.R.
        • Dillman D.A.
        Development of a standard e-mail methodology: results of an experiment.
        Public Opin Q. 1998; 62: 378-397
        • Strachan P.
        • Arthur H.
        • Demers C.
        • Robson R.
        The complexity of prognosis communication in heart failure: patient and cardiologists' preferences in the outpatient clinical setting.
        World J Cardiovasc Dis. 2013; 3: 108-117
        • The A.M.
        • Hak T.
        • Koëter G.
        • van Der Wal G.
        Collusion in doctor-patient communication about imminent death: an ethnographic study.
        BMJ. 2000; 321: 1376-1381
        • Ahluwalia S.C.
        • Levin J.R.
        • Lorenz K.A.
        • Gordon H.S.
        “There's no cure for this condition”: how physicians discuss advance care planning in heart failure.
        Patient Educ Couns. 2013; 91: 200-205
        • Heyland D.K.
        • Allan D.E.
        • Rocker G.
        • Dodek P.
        • Pichora D.
        • Gafni A.
        Discussing prognosis with patients and their families near the end of life: impact on satisfaction with end-of-life care.
        Open Med. 2009; 3: e101-e110
        • You J.J.
        • Dodek P.
        • Lamontagne F.
        • Downar J.
        • Sinuff T.
        • Jiang X.
        • et al.
        What really matters in end-of-life discussions? Perspectives of patients in hospital with serious illness and their families.
        CMAJ. 2014; 186: E679-E687
        • Anderson W.G.
        • Kools S.
        • Lyndon A.
        Dancing around death: hospitalist-patient communication about serious illness.
        Qual Health Res. 2013; 23: 3-13
        • Meier D.E.
        • Back A.L.
        • Morrison R.S.
        The inner life of physicians and care of the seriously ill.
        JAMA. 2001; 286: 3007-3014
        • Caldwell P.H.
        • Arthur H.M.
        • Demers C.
        Preferences of patients with heart failure for prognosis communication.
        Can J Cardiol. 2007; 23: 791-796
        • Simon J.
        • Porterfield P.
        • Bouchal S.R.
        • Heyland D.
        “Not yet” and “Just ask”: barriers and facilitators to advance care planning—a qualitative descriptive study of the perspectives of seriously ill, older patients and their families.
        BMJ Support Palliat Care. 2015; 5: 54-62
        • Allen L.A.
        • Matlock D.D.
        • Shetterly S.M.
        • Xu S.
        • Levy W.C.
        • Portalupi L.B.
        • et al.
        Use of risk models to predict death in the next year among individual ambulatory patients with heart failure.
        JAMA Cardiol. 2017; 2: 435-441
        • Bernacki R.E.
        • Block S.D.
        Communication about serious illness care goals: a review and synthesis of best practices.
        JAMA Intern Med. 2014; 174: 1994-2003
        • Smith A.K.
        • White D.B.
        • Arnold R.M.
        Uncertainty—the other side of prognosis.
        N Engl J Med. 2013; 368: 2448-2450
        • Diem S.J.
        • Lantos J.D.
        • Tulsky J.A.
        Cardiopulmonary resuscitation on television. Miracles and misinformation.
        N Engl J Med. 1996; 334: 1578-1582
        • Heyland D.K.
        • Frank C.
        • Groll D.
        • Pichora D.
        • Dodek P.
        • Rocker G.
        • et al.
        Understanding cardiopulmonary resuscitation decision making: perspectives of seriously ill hospitalized patients and family members.
        Chest. 2006; 130: 419-428
        • Habal M.V.
        • Micevski V.
        • Greenwood S.
        • Delgado D.H.
        • Ross H.J.
        How aware of advanced care directives are heart failure patients, and are they using them?.
        Can J Cardiol. 2011; 27: 376-381
        • El-Jawahri A.
        • Paasche-Orlow M.K.
        • Matlock D.
        • Stevenson L.W.
        • Lewis E.F.
        • Stewart G.
        • et al.
        Randomized, controlled trial of an advance care planning video decision support tool for patients with advanced heart failure.
        Circulation. 2016; 134: 52-60
        • Lampert R.
        • Hayes D.L.
        • Annas G.J.
        • Farley M.A.
        • Goldstein N.E.
        • Hamilton R.M.
        • et al.
        HRS expert consensus statement on the management of cardiovascular implantable electronic devices (CIEDs) in patients nearing end of life or requesting withdrawal of therapy.
        Heart Rhythm. 2010; 7: 1008-1026
        • Kramer D.B.
        • Matlock D.D.
        • Buxton A.E.
        • Goldstein N.E.
        • Goodwin C.
        • Green A.R.
        • et al.
        Implantable cardioverter-defibrillator use in older adults: proceedings of a Hartford Change Agents symposium.
        Circ Cardiovasc Qual Outcomes. 2015; 8: 437-446
        • Goldstein N.E.
        • Mehta D.
        • Teitelbaum E.
        • Bradley E.H.
        • Morrison R.S.
        “It's like crossing a bridge” complexities preventing physicians from discussing deactivation of implantable defibrillators at the end of life.
        J Gen Intern Med. 2008; 23: 2-6
        • Goldstein N.E.
        • Lampert R.
        • Bradley E.
        • Lynn J.
        • Krumholz H.M.
        Management of implantable cardioverter defibrillators in end-of-life care.
        Ann Intern Med. 2004; 141: 835-838
        • Lewis W.R.
        • Luebke D.L.
        • Johnson N.J.
        • Harrington M.D.
        • Costantini O.
        • Aulisio M.P.
        Withdrawing implantable defibrillator shock therapy in terminally ill patients.
        Am J Med. 2006; 119: 892-896
        • Borne R.T.
        • Varosy P.D.
        • Masoudi F.A.
        Implantable cardioverter-defibrillator shocks: epidemiology, outcomes, and therapeutic approaches.
        JAMA Intern Med. 2013; 173: 859-865
        • Kramer D.B.
        • Kesselheim A.S.
        • Brock D.W.
        • Maisel W.H.
        Ethical and legal views of physicians regarding deactivation of cardiac implantable electrical devices: a quantitative assessment.
        Heart Rhythm. 2010; 7: 1537-1542
        • Kelley A.S.
        • Reid M.C.
        • Miller D.H.
        • Fins J.J.
        • Lachs M.S.
        Implantable cardioverter-defibrillator deactivation at the end of life: a physician survey.
        Am Heart J. 2009; 157: 702-708
        • Strachan P.H.
        • de Laat S.
        • Carroll S.L.
        • Schwartz L.
        • Vaandering K.
        • Toor G.K.
        • et al.
        Readability and content of patient education material related to implantable cardioverter defibrillators.
        J Cardiovasc Nurs. 2012; 27: 495-504
        • Goldstein N.E.
        • Mehta D.
        • Siddiqui S.
        • Teitelbaum E.
        • Zeidman J.
        • Singson M.
        • et al.
        “That's like an act of suicide” patients' attitudes toward deactivation of implantable defibrillators.
        J Gen Intern Med. 2008; 23: 7-12
        • Stewart G.C.
        • Weintraub J.R.
        • Pratibhu P.P.
        • Semigran M.J.
        • Camuso J.M.
        • Brooks K.
        • et al.
        Patient expectations from implantable defibrillators to prevent death in heart failure.
        J Card Fail. 2010; 16: 106-113
        • Legare F.
        • Stacey D.
        • Gagnon S.
        • Dunn S.
        • Pluye P.
        • Frosch D.
        • et al.
        Validating a conceptual model for an inter-professional approach to shared decision making: a mixed methods study.
        J Eval Clin Pract. 2011; 17: 554-564
        • Reeves S.
        • Zwarenstein M.
        • Goldman J.
        • Barr H.
        • Freeth D.
        • Hammick M.
        • et al.
        Interprofessional education: effects on professional practice and health care outcomes.
        Cochrane Database Syst Rev. 2008; (CD002213)
        • Phillips Jr, R.L.
        • Harper D.C.
        • Wakefield M.
        • Green L.A.
        • Fryer Jr, G.E.
        Can nurse practitioners and physicians beat parochialism into plowshares?.
        Health Aff (Millwood). 2002; 21: 133-142