Primary palliative care for heart failure: what is it? How do we implement it?

Heart Failure Reviews

Volumn 22, Issue 5, 2017, Pages 611-620

  Gelfman, Laura P ^a,b   Kavalieratos, Dio ^c   Teuteberg, Winifred G ^c   Lala, Anuradha ^a   Goldstein, Nathan E ^a,b  

^a MOUNT SINAI SCHOOL OF MEDICINE   (United States)

^b VETERANS AFFAIRS MEDICAL CENTER   (United States)

^c UNIVERSITY OF PITTSBURGH MEDICAL CENTER   (United States)

Author keywords

Heart failure; Palliative care

Indexed keywords

ADVANCE CARE PLANNING; CARDIOLOGIST; COMMUNICATION SKILL; CONSULTATION; HEART FAILURE; HUMAN; INTERNIST; MEDICAL SPECIALIST; PALLIATIVE THERAPY; PATIENT PREFERENCE; POPULATION RESEARCH; PRIMARY MEDICAL CARE; PSYCHOSOCIAL CARE; QUALITY OF LIFE; REVIEW; TREATMENT PLANNING; ORGANIZATION AND MANAGEMENT; PRIMARY HEALTH CARE; PROGNOSIS;

HEART FAILURE; HUMANS; PALLIATIVE CARE; PRIMARY HEALTH CARE; PROGNOSIS; QUALITY OF LIFE;

EID: 85014639220     PISSN: 13824147     EISSN: 15737322     Source Type: Journal    
DOI: 10.1007/s10741-017-9604-9     Document Type: Review

References (82)

1. Ziaeian B, Fonarow GC (2016) Epidemiology and aetiology of heart failure. Nat Rev Cardiol 13(6):368–378
2. Writing Committee M, Yancy CW, Jessup M et al (2013) 2013 ACCF/AHA guideline for the management of heart failure: a report of the American College of Cardiology Foundation/American Heart Association Task Force on practice guidelines. Circulation 128(16):e240–e327
3. Liu L, Eisen HJ (2014) Epidemiology of heart failure and scope of the problem. Cardiol Clin 32(1):1–8 vii
4. Solano J, Gomes B, Higginson I (2006) A comparison of symptom prevalence in far advanced cancer, AIDS, heart disease, chronic obstructive pulmonary disease and renal disease. J Pain Symptom Manag 31(1):58–69
5. Bekelman DB, Havranek EP, Becker DM et al (2007) Symptoms, depression, and quality of life in patients with heart failure. J Card Fail 13(8):643–648
6. Kavalieratos D, Kamal AH, Abernethy AP et al (2014) Comparing unmet needs between community-based palliative care patients with heart failure and patients with cancer. J Palliat Med 17(4):475–481
7. Juenger J, Schellberg D, Kraemer S et al (2002) Health related quality of life in patients with congestive heart failure: comparison with other chronic diseases and relation to functional variables. Heart 87(3):235–241
8. Allen L, Yager J, Funk M et al (2008) Discordance between patient-predicted and model-predicted life expectancy among ambulatory patients with heart failure. JAMA 299(21):2533–2542
9. Bakitas M, Macmartin M, Trzepkowski K et al (2013) Palliative care consultations for heart failure patients: how many, when, and why? J Card Fail 19(3):193–201
10. Goebel J, Doering L, Shugarman L et al (2009) Heart failure: the hidden problem of pain. J Pain Symptom Manag 38(5):698–707
11. Evangelista L, Sackett E, Dracup K (2009) Pain and heart failure: unrecognized and untreated. Eur J Cardiovasc Nurs 8(3):169–173
12. Hunt SA, Abraham WT, Chin MH et al (2009) Focused update incorporated into the ACC/AHA 2005 Guidelines for the Diagnosis and Management of Heart Failure in Adults: a report of the American College of Cardiology Foundation/American Heart Association Task Force on Practice Guidelines: developed in collaboration with the International Society for Heart and Lung Transplantation. Circulation 119(14):e391–e479
13. Johnson MJ, Booth S (2010) Palliative and end-of-life care for patients with chronic heart failure and chronic lung disease. Clin Med 10(3):286–289
14. O’Leary N, Murphy NF, O’Loughlin C, Tiernan E, McDonald K (2009) A comparative study of the palliative care needs of heart failure and cancer patients. Eur J Heart Fail 11(4):406–412
15. Steinhauser KE, Arnold RM, Olsen MK et al (2011) Comparing three life-limiting diseases: does diagnosis matter or is sick, sick? J Pain Symptom Manage
16. Currow DC, Smith J, Davidson PM, Newton PJ, Agar MR, Abernethy AP (2010) Do the trajectories of dyspnea differ in prevalence and intensity by diagnosis at the end of life? A consecutive cohort study. J Pain Symptom Manag 39(4):680–690
17. Heidenreich PA, Albert NM, Allen LA et al (2013) Forecasting the impact of heart failure in the United States: a policy statement from the American Heart Association. Circ Heart Fail 6(3):606–619
18. Cain CJ, Wicks MN (2000) Caregiver attributes as correlates of burden in family caregivers coping with chronic obstructive pulmonary disease. J Fam Nurs 6(1):46–68
19. Dracup K, Evangelista LS, Doering L, Tullman D, Moser DK, Hamilton M (2004) Emotional well-being in spouses of patients with advanced heart failure. Heart Lung 33(6):354–361
20. Harding R, Selman L, Beynon T et al (2008) Meeting the communication and information needs of chronic heart failure patients. J Pain Symptom Manag 36(2):149–156
21. Lemond L, Allen LA (2011) Palliative care and hospice in advanced heart failure. Prog Cardiovasc Dis 54(2):168–178
22. Morrison RS, Meier DE (2004) Palliative care. N Engl J Med 350(25):2582–2590
23. Morrison RS, Dietrich J, Ladwig S et al (2011) Palliative care consultation teams cut hospital costs for Medicaid beneficiaries. Health Aff 30(3):454–463
24. Kavalieratos D, Corbelli J, Zhang D et al (2016) Association between palliative care and patient and caregiver outcomes: a systematic review and meta-analysis. JAMA 316(20):2104–2114
25. Temel JS, Greer JA, Muzikansky A et al (2010) Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med 363(8):733–742
26. Bakitas M, Lyons KD, Hegel MT et al (2009) Effects of a palliative care intervention on clinical outcomes in patients with advanced cancer: the project ENABLE II randomized controlled trial. JAMA 302(7):741–749
27. Rabow M, Dibble S, Pantilat S, McPhee S (2004) The comprehensive care team: a controlled trial of outpatient palliative medicine consultation. Arch Intern Med 164(1):83–91
28. Abernethy AP, Currow DC, Fazekas BS, Luszcz MA, Wheeler JL, Kuchibhatla M (2008) Specialized palliative care services are associated with improved short- and long-term caregiver outcomes. Supportive care in cancer: official journal of the Multinational Association of Supportive Care in Cancer 16(6):585–597
29. Sidebottom AC, Jorgenson A, Richards H, Kirven J, Sillah A (2015) Inpatient palliative care for patients with acute heart failure: outcomes from a randomized trial. J Palliat Med 18(2):134–142
30. Brannstrom M, Boman K (2014) Effects of person-centred and integrated chronic heart failure and palliative home care. PREFER: a randomized controlled study. Eur J Heart Fail 16(10):1142–1151
31. Aiken LS, Butner J, Lockhart CA et al (2006) Outcome evaluation of a randomized trial of the PhoenixCare intervention: program of case management and coordinated care for the seriously chronically ill. J Palliat Med 9(1):111–126
32. Wong F, Ng A, Lee P, et al (2016) Effects of a transitional palliative care model on patients with end-stage heart failure: a randomised controlled trial. Heart
33. Bekelman DB, Plomondon ME, Carey EP et al (2015) Primary results of the patient-centered disease management (PCDM) for heart failure study: a randomized clinical trial. JAMA Intern Med 175(5):725–732
34. Brumley R, Enguidanos S, Jamison P et al (2007) Increased satisfaction with care and lower costs: results of a randomized trial of in-home palliative care. J Am Geriatr Soc 55(7):993–1000
35. Fendler TJ, Swetz KM, Allen LA (2015) Team-based palliative and end-of-life care for heart failure. Heart Fail Clin 11(3):479–498
36. Braun LT, Grady KL, Kutner JS et al (2016) Palliative care and cardiovascular disease and stroke: a policy statement from the American Heart Association/American Stroke Association. Circulation
37. Kavalieratos D, Corbelli J, Ernecoff N, Arnold R, Schenker Y (2016) Identifying the impact of palliative care interventions: a systematic review (SA538D). J Pain Symptom Manag 51(2):406
38. Quill TE, Abernethy AP (2013) Generalist plus specialist palliative care—creating a more sustainable model. N Engl J Med 368(13):1173–1175
39. Fang JC, Ewald GA, Allen LA et al (2015) Advanced (stage D) heart failure: a statement from the heart failure society of america guidelines committee. J Card Fail
40. Yancy CW, Jessup M, Bozkurt B et al 2013 ACCF/AHA Guideline for the Management of Heart Failure: a report of the American College of Cardiology Foundation/American Heart Association Task Force on practice fuidelines. Circulation
41. Feldman D, Pamboukian SV, Teuteberg JJ et al (2013) The 2013 International Society for Heart and Lung Transplantation Guidelines for mechanical circulatory support: executive summary. J Heart Lung Transplant 32(2):157–187
42. Dans M, Garcia K (2015) Palliative care and hospice in patients with advanced cardiovascular disease. End-of-Life Care in Cardiovascular Disease: Springer:33–49
43. Jurgens CY, Goodlin S, Dolansky M et al (2015) Heart failure management in skilled nursing facilities: a scientific statement from the American Heart Association and the Heart Failure Society of America. Circulation: Heart Failure 8(3):655–687
44. Allen LA, Stevenson LW, Grady KL et al (2012) Decision making in advanced heart failure: a scientific statement from the American Heart Association. Circulation 125(15):1928–1952
45. Andersen J (2009) NHPCO 2009 facts and figures. 1–15
46. Dunlay SM, Foxen JL, Cole T et al (2015) A survey of clinician attitudes and self-reported practices regarding end-of-life care in heart failure. Palliat Med 29(3):260–267
47. Brännström M, Forssell A, Pettersson B (2011) Physicians’ experiences of palliative care for heart failure patients. Eur J Cardiovasc Nurs 10(1):64–69
48. Hanratty B, Hibbert D, Mair F et al (2002) Doctors’ perceptions of palliative care for heart failure: focus group study. BMJ 325(7364):581–585
49. Kavalieratos D (2014) Attitudes and perceptions regarding a generalist plus specialist model of palliative care in heart failure. J Am Coll Cardiol 63(12_S)
50. Kavalieratos D, Mitchell EM, Carey TS et al (2014) “Not the ‘grim reaper service’”: an assessment of provider knowledge, attitudes, and perceptions regarding palliative care referral barriers in heart failure. J Amer Heart Assn 3(1):e544–e544
51. Kamal AH, Maguire JM, Meier DE (2015) Evolving the palliative care workforce to provide responsive, serious illness care. Ann Intern Med
52. A Call to Action: Policy Initiatives to Support Palliative Care. https://reportcard.capc.org/recommendations/. Accessed 5/12, 2016
53. Lupu D (2010) American Academy of H, Palliative Medicine Workforce Task F. Estimate of current hospice and palliative medicine physician workforce shortage. J Pain Symptom Manag 40(6):899–911
54. Schenker Y, Arnold R (2015) The next era of palliative care. JAMA:1–2
55. Krumholz HM, Currie PM, Riegel B et al (2006) A taxonomy for disease management: a scientific statement from the American Heart Association Disease Management Taxonomy Writing Group. Circulation 114(13):1432–1445
56. Munoz-Mendoza J (2015) Competencies in palliative care for cardiology fellows. J Am Coll Cardiol 65(7):750–752
57. Fuster V, Halperin JL, Williams ES et al (2015) COCATS 4 task force 1: training in ambulatory, consultative, and longitudinal cardiovascular care. J Am Coll Cardiol 65(17):1734–1753
58. Bekelman DB, Nowels CT, Allen LA, Shakar S, Kutner JS, Matlock DD (2011) Outpatient palliative care for chronic heart failure: a case series. J Palliat Med 14(7):815–821
59. Khan RF, Feder S, Goldstein NE, Chaudhry SI (2015) Symptom burden among patients who were hospitalized for heart failure. JAMA Intern Med 175(10):1713–1715
60. Dunlay SM, Swetz KM, Mueller PS, Roger VL (2012) Advance directives in community patients with heart failure. Circ Cardiovasc Qual Outcomes. 5(3):283–289
61. Butler J, Binney Z, Kalogeropoulos A et al (2015) Advance directives among hospitalized patients with heart failure. JACC Heart Fail. 3(2):112–121
62. Stevenson LW, O’Donnell A (2015) Advanced care planning: care to plan in advance. JACC Heart Fail 3(2):122–126
63. Dunlay SM, Swetz KM, Redfield MM, Mueller PS, Roger VL (2014) Resuscitation preferences in community patients with heart failure. Circ Cardiovasc Qual Outcomes 7(3):353–359
64. Buchhalter LC, Ottenberg AL, Webster TL, Swetz KM, Hayes DL, Mueller PS (2014) Features and outcomes of patients who underwent cardiac device deactivation. JAMA Intern Med 174(1):80–85
65. Goldstein NE, Mehta D, Teitelbaum E, Bradley EH, Morrison RS (2008) “It’s like crossing a bridge” complexities preventing physicians from discussing deactivation of implantable defibrillators at the end of life. J Gen Intern Med 23(Suppl 1):2–6
66. Goldstein NE, Lampert R, Bradley E, Lynn J, Krumholz HM (2004) Management of implantable cardioverter defibrillators in end-of-life care. Ann Intern Med 141(11):835–838
67. Joo H, Fang J, Losby JL, Wang G (2015) Cost of informal caregiving for patients with heart failure. Am Heart J 169(1):142–148 e142
68. Marcuccilli L, Casida JJ, Bakas T, Pagani FD (2014) Family caregivers’ inside perspectives: caring for an adult with a left ventricular assist device as a destination therapy. Prog Transplant 24(4):332–340
69. McIlvennan CK, Jones J, Allen LA, Swetz KM, Nowels C, Matlock DD (2016) Bereaved caregiver perspectives on the end-of-life experience of patients with a left ventricular assist device. JAMA Intern Med 176(4):534–539
70. Sherman DW, Matzo ML, Rogers S, McLaughlin M, Virani R (2002) Achieving quality care at the end of life: a focus of the End-of-Life Nursing Education Consortium (ELNEC) curriculum. Journal of professional nursing: official journal of the American Association of Colleges of Nursing 18(5):255–262
71. Sherman DW, Matzo ML, Pitorak E, Ferrell BR, Malloy P (2005) Preparation and care at the time of death: content of the ELNEC curriculum and teaching strategies. Journal for nurses in staff development: JNSD: official journal of the National Nursing Staff Development Organization 21(3):93–100 quiz 101-102
72. Matzo ML, Sherman DW, Penn B, Ferrell BR (2003) The end-of-life nursing education consortium (ELNEC) experience. Nurse Educ 28(6):266–270
73. Matzo ML, Sherman DW, Sheehan DC, Ferrell BR, Penn B (2003) Communication skills for end-of-life nursing care. Teaching strategies from the ELNEC curriculum. Nurs Educ Perspect 24(4):176–183
74. 2016 Health NIo. integrating palliative care with disease management to improve outcomes among patients with advanced heart failure: interventional research career development. https://projectreporter.nih.gov/project_info_description.cfm?aid=9162916&icde=31188392&ddparam=&ddvalue=&ddsub=&cr=1&csb=default&cs=ASC. Accessed September 28, 2016
75. Berlacher K TW, Reitschuler-Cross E, Arnold RM (2015) CardioTalk: the future of communication training in cardiovascular medicine. Paper presented at: American College of Cardiology Annual Assembly; San Diego, CA
76. Back AL, Arnold RM, Baile WF et al (2007) Efficacy of communication skills training for giving bad news and discussing transitions to palliative care. Arch Intern Med 167(5):453–460
77. Back AL, Arnold RM, Tulsky JA, Baile WF, Edwards K (2010) “Could I add something?”: teaching communication by intervening in real time during a clinical encounter. Acad Med 85(6):1048–1051
78. Lenzi R, Baile WF, Berek J et al (2005) Design, conduct and evaluation of a communication course for oncology fellows. J Cancer Educ 20(3):143–149
79. Armstrong E, Parsa-Parsi R (2005) How can physicians’ learning styles drive educational planning? Acad Med 80(7):680–684
80. Ericsson KA (2004) Deliberate practice and the acquisition and maintenance of expert performance in medicine and related domains. Acad Med 79(10 Suppl):S70–S81
81. Stevenson LW, Davis RB (2016) Model building as an educational hobby. Circ Heart Fail 9(8)
82. Xie K, Gelfman L, Horton JR, Goldstein NE (2017) State of research on palliative care in heart failure as evidenced by published literature, conference proceedings, and NIH Funding. J Card Fail 23(2):197–200