Research Article
No access
Published Online: 6 December 2011

Giving Voice to Patients' and Family Caregivers' Needs in Chronic Heart Failure: Implications for Palliative Care Programs

Publication: Journal of Palliative Medicine
Volume 14, Issue Number 12

Abstract

Background: The American College of Cardiology Foundation/American Heart Association (ACC/AHA) Guidelines for the Management of Heart Failure recommend palliative care in the context of Stage D HF or at the end of life. Previous studies related to heart failure (HF) palliative care provide useful information about patients' experiences, but they do not provide concrete guidance for what palliative care needs are most important and how a palliative care program should be structured.
Objectives: Describe HF patients' and their family caregivers' major concerns and needs. Explore whether, how, and when palliative care would be useful to them.
Design and participants: Qualitative study using in-depth interviews of 33 adult outpatients with symptomatic HF identified using purposive sampling and 20 of their family caregivers.
Approach: Interviews were transcribed verbatim and analyzed using the constant comparative method.
Key results: Overall, patients and caregivers desired early support adjusting to the limitations and future course of illness, relief of a number of diverse symptoms, and the involvement of family caregivers using a team approach. A diverse group of participants desired these elements of palliative care early in illness, concurrent with their disease-specific care, coordinated by a provider who understood their heart condition and knew them well. Some diverging needs and preferences were found based on health status and age.
Conclusions: HF patients and their family caregivers supported early integration of palliative care services, particularly psychosocial support and symptom control, using a collaborative team approach. Future research should test the feasibility and effectiveness of integrating such a program into routine HF care.

Get full access to this article

View all available purchase options and get full access to this article.

References

1.
Solano JPGomes BHigginson IJ. A comparison of symptom prevalence in far advanced cancer, AIDS, heart disease, chronic obstructive pulmonary disease and renal diseaseJ Pain Symptom Manage20063158-69. 1. Solano JP, Gomes B, Higginson IJ: A comparison of symptom prevalence in far advanced cancer, AIDS, heart disease, chronic obstructive pulmonary disease and renal disease. J Pain Symptom Manage 2006;31:58–69.
2.
Janssen DJSpruit MAWouters EFSchols JM. Daily symptom burden in end-stage chronic organ failure: A systematic reviewPalliat Med200822938-948. 2. Janssen DJ, Spruit MA, Wouters EF, Schols JM: Daily symptom burden in end-stage chronic organ failure: A systematic review. Palliat Med 2008;22:938–948.
3.
Rutledge TReis VALinke SEGreenberg BHMills PJ. Depression in heart failure a meta-analytic review of prevalence, intervention effects, and associations with clinical outcomesJ Am Coll Cardiol2006481527-1537. 3. Rutledge T, Reis VA, Linke SE, Greenberg BH, Mills PJ: Depression in heart failure a meta-analytic review of prevalence, intervention effects, and associations with clinical outcomes. J Am Coll Cardiol 2006;48:1527–1537.
4.
Roger VLWeston SARedfield MMHellermann-Homan JPKillian JYawn BPJacobsen SJ. Trends in heart failure incidence and survival in a community-based populationJAMA2004292344-350. 4. Roger VL, Weston SA, Redfield MM, Hellermann-Homan JP, Killian J, Yawn BP, Jacobsen SJ: Trends in heart failure incidence and survival in a community-based population. JAMA 2004;292:344–350.
5.
Levy DKenchaiah SLarson MGBenjamin EJKupka MJHo KKMurabito JMVasan RS. Long-term trends in the incidence of and survival with heart failureN Engl J Med20023471397-1402. 5. Levy D, Kenchaiah S, Larson MG, Benjamin EJ, Kupka MJ, Ho KK, Murabito JM, Vasan RS: Long-term trends in the incidence of and survival with heart failure. N Engl J Med 2002;347:1397–1402.
6.
Stewart SMacIntyre KHole DJCapewell SMcMurray JJ. More “malignant” than cancer? Five-year survival following a first admission for heart failureEur J Heart Fail20013315-322. 6. Stewart S, MacIntyre K, Hole DJ, Capewell S, McMurray JJ: More “malignant” than cancer? Five-year survival following a first admission for heart failure. Eur J Heart Fail 2001;3:315–322.
7.
Hunt SAAbraham WTChin MHFeldman AMFrancis GSGaniats TGJessup MKonstam MAMancini DMMichl KOates JARahko PSSilver MAStevenson LWYancy CW. 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 TransplantationCirculation2009119e391-e479. 7. Hunt SA, Abraham WT, Chin MH, Feldman AM, Francis GS, Ganiats TG, Jessup M, Konstam MA, Mancini DM, Michl K, Oates JA, Rahko PS, Silver MA, Stevenson LW, Yancy CW: 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 2009;119:e391–e479.
8.
Hauptman PJHavranek EP. Integrating palliative care into heart failure careArch Intern Med2005165374-378. 8. Hauptman PJ, Havranek EP: Integrating palliative care into heart failure care. Arch Intern Med 2005;165:374–378.
9.
Selman LHarding RBeynon THodson FHazeldine CCoady EGibbs LHigginson IJ. Modelling services to meet the palliative care needs of chronic heart failure patients and their families: current practice in the UKPalliat Med200721385-390. 9. Selman L, Harding R, Beynon T, Hodson F, Hazeldine C, Coady E, Gibbs L, Higginson IJ: Modelling services to meet the palliative care needs of chronic heart failure patients and their families: current practice in the UK. Palliat Med 2007;21:385–390.
10.
Goodlin SJHauptman PJArnold RGrady KHershberger REKutner JMasoudi FSpertus JDracup KCleary JFMedak RCrispell KPiña IStuart BWhitney CRector TTeno JRenlund DG. Consensus statement: Palliative and supportive care in advanced heart failureJ Card Fail200410200-209. 10. Goodlin SJ, Hauptman PJ, Arnold R, Grady K, Hershberger RE, Kutner J, Masoudi F, Spertus J, Dracup K, Cleary JF, Medak R, Crispell K, Piña I, Stuart B, Whitney C, Rector T, Teno J, Renlund DG: Consensus statement: Palliative and supportive care in advanced heart failure. J Card Fail 2004;10:200–209.
11.
Dougherty CMPyper GPAu DHLevy WCSullivan MD. Drifting in a shrinking future: Living with advanced heart failureJ Cardiovasc Nurs200722480-487. 11. Dougherty CM, Pyper GP, Au DH, Levy WC, Sullivan MD: Drifting in a shrinking future: Living with advanced heart failure. J Cardiovasc Nurs 2007;22:480–487.
12.
Murray SABoyd KKendall MWorth ABenton TFClausen H. Dying of lung cancer or cardiac failure: Prospective qualitative interview study of patients and their carers in the communityBMJ2002325929. 12. Murray SA, Boyd K, Kendall M, Worth A, Benton TF, Clausen H: Dying of lung cancer or cardiac failure: Prospective qualitative interview study of patients and their carers in the community. BMJ 2002;325:929.
13.
Rodriguez KLAppelt CJSwitzer GESonel AFArnold RM. “They diagnosed bad heart”: A qualitative exploration of patients' knowledge about and experiences with heart failureHeart Lung200837257-265. 13. Rodriguez KL, Appelt CJ, Switzer GE, Sonel AF, Arnold RM: “They diagnosed bad heart”: A qualitative exploration of patients' knowledge about and experiences with heart failure. Heart Lung 2008;37:257–265.
14.
Rogers AEAddington-Hall JMAbery AJMcCoy ASBulpitt CCoats AJGibbs JS. Knowledge and communication difficulties for patients with chronic heart failure: Qualitative studyBMJ2000321605-607. 14. Rogers AE, Addington-Hall JM, Abery AJ, McCoy AS, Bulpitt C, Coats AJ, Gibbs JS: Knowledge and communication difficulties for patients with chronic heart failure: Qualitative study. BMJ 2000;321:605–607.
15.
Rogers AAddington-Hall JMcCoy ASEdmonds PMAbery AJCoats AJGibbs JS. A Qualitative Study of Chronic Heart Failure Paients' Understanding of Their Symptoms and Drug TherapyEur J Heart Fail20024283-287. 15. Rogers A, Addington-Hall J, McCoy AS, Edmonds PM, Abery AJ, Coats AJ, Gibbs JS: A Qualitative Study of Chronic Heart Failure Paients' Understanding of Their Symptoms and Drug Therapy. Eur J Heart Fail 2002;4:283–287.
16.
Harding RSelman LBeynon THodson FCoady ERead CWalton MGibbs LHigginson IJ. Meeting the communication and information needs of chronic heart failure patientsJ Pain Symptom Manage200836149-156. 16. Harding R, Selman L, Beynon T, Hodson F, Coady E, Read C, Walton M, Gibbs L, Higginson IJ: Meeting the communication and information needs of chronic heart failure patients. J Pain Symptom Manage 2008;36:149–156.
17.
Small NBarnes SGott MPayne SParker CSeamark DGariballa S. Dying, death and bereavement: A qualitative study of the views of carers of people with heart failure in the UKBMC Palliat Care200986. 17. Small N, Barnes S, Gott M, Payne S, Parker C, Seamark D, Gariballa S: Dying, death and bereavement: A qualitative study of the views of carers of people with heart failure in the UK. BMC Palliat Care 2009;8:6.
18.
Selman LHarding RBeynon THodson FCoady EHazeldine CWalton MGibbs LHigginson IJ. 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”Heart2007938963-967. 18. Selman L, Harding R, Beynon T, Hodson F, Coady E, Hazeldine C, Walton M, Gibbs L, Higginson IJ. 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):963–967.
19.
Gott MSmall NBarnes SPayne SSeamark D. Older people's views of a good death in heart failure: Implications for palliative care provisionSoc Sci Med2008671113-1121. 19. Gott M, Small N, Barnes S, Payne S, Seamark D: Older people's views of a good death in heart failure: Implications for palliative care provision. Soc Sci Med 2008;67:1113–1121.
20.
National Consensus Project for Quality Palliative Care2004. Clinical practice guidelines for quality palliative carewww.nationalconsensusproject.orgNovember112011. 20. National Consensus Project for Quality Palliative Care. 2004. Clinical practice guidelines for quality palliative care. www.nationalconsensusproject.org [Last accessed November 11, 2011.]
21.
Muhr T. ATLAS.ti for WindowsBerlinScientific Software Development1997. 21. Muhr T: ATLAS.ti for Windows. Berlin: Scientific Software Development, 1997.
22.
Green CPPorter CBBresnahan DRSpertus JA. Development and evaluation of the Kansas City Cardiomyopathy Questionnaire: A new health status measure for heart failureJ Am Coll Cardiol2000351245-1255. 22. Green CP, Porter CB, Bresnahan DR, Spertus JA: Development and evaluation of the Kansas City Cardiomyopathy Questionnaire: A new health status measure for heart failure. J Am Coll Cardiol 2000;35:1245–1255.
23.
Heidenreich PASpertus JAJones PGWeintraub WSRumsfeld JSRathore SSPeterson EDMasoudi FAKrumholz HMHavranek EPConard MWWilliams RE. Cardiovascular Outcomes Research Consortium: Health status identifies heart failure outpatients at risk for hospitalization or deathJ Am Coll Cardiol200647752-756. 23. Heidenreich PA, Spertus JA, Jones PG, Weintraub WS, Rumsfeld JS, Rathore SS, Peterson ED, Masoudi FA, Krumholz HM, Havranek EP, Conard MW, Williams RE; Cardiovascular Outcomes Research Consortium: Health status identifies heart failure outpatients at risk for hospitalization or death. J Am Coll Cardiol 2006;47:752–756.
24.
Corbin JStrauss A. Grounded theory research: procedures, canons, and evaluative criteriaQualitative Sociol1990133-21. 24. Corbin J, Strauss A: Grounded theory research: procedures, canons, and evaluative criteria. Qualitative Sociol 1990;13:3–21.
25.
Charmaz KConstructing Grounded Theory: A Practical Guide through Qualitative AnalysisLos AngelesSage Publications2006. 25. Charmaz K: Constructing Grounded Theory: A Practical Guide through Qualitative Analysis. Los Angeles: Sage Publications, 2006.
26.
Turvey CLKlein DMPies CJ. Depression, physical impairment, and treatment of depression in chronic heart failureJ Cardiovasc Nurs200621178-185. 26. Turvey CL, Klein DM, Pies CJ: Depression, physical impairment, and treatment of depression in chronic heart failure. J Cardiovasc Nurs 2006;21:178–185.
27.
Daley AMatthews CWilliams A. Heart failure and palliative care services working in partnership: Report of a new model of carePalliat Med200620593-601. 27. Daley A, Matthews C, Williams A: Heart failure and palliative care services working in partnership: Report of a new model of care. Palliat Med 2006;20:593–601.
28.
Scott JCConner DAVenohr IWeintraub WSRumsfeld JSRathore SSPeterson EDMasoudi FAKrumholz HMHavranek EPConard MWWilliams RE. Cardiovascular Outcomes Research Consortium: Effectiveness of a group outpatient visit model for chronically ill older health maintenance organization members: A 2-year randomized trial of the cooperative health care clinicJ Am Geriatr Soc2004521463-1470. 28. Scott JC, Conner DA, Venohr I, Weintraub WS, Rumsfeld JS, Rathore SS, Peterson ED, Masoudi FA, Krumholz HM, Havranek EP, Conard MW, Williams RE; Cardiovascular Outcomes Research Consortium: Effectiveness of a group outpatient visit model for chronically ill older health maintenance organization members: A 2-year randomized trial of the cooperative health care clinic. J Am Geriatr Soc 2004;52:1463–1470.
29.
Turvey CLKlein DM. Remission from depression comorbid with chronic illness and physical impairmentAm J Psychiatry2008165569-574. 29. Turvey CL, Klein DM: Remission from depression comorbid with chronic illness and physical impairment. Am J Psychiatry 2008;165:569–574.
30.
Mishel MHGermino BBGil KMBelyea MLaney ICStewart JPorter LClayton M. Benefits from an uncertainty management intervention for African-American and Caucasian older long-term breast cancer survivorsPsycho-oncology200514962-978. 30. Mishel MH, Germino BB, Gil KM, Belyea M, Laney IC, Stewart J, Porter L, Clayton M: Benefits from an uncertainty management intervention for African-American and Caucasian older long-term breast cancer survivors. Psycho-oncology 2005;14:962–978.
31.
Boyd KJWorth AKendall MPratt RHockley JDenvir MMurray SA. Making sure services deliver for people with advanced heart failure: A longitudinal qualitative study of patients, family carers, and health professionalsPalliat Med200923767-776. 31. Boyd KJ, Worth A, Kendall M, Pratt R, Hockley J, Denvir M, Murray SA: Making sure services deliver for people with advanced heart failure: A longitudinal qualitative study of patients, family carers, and health professionals. Palliat Med 2009;23:767–776.
32.
Jaarsma TBeattie JMRyder MRutten FHMcDonagh TMohacsi PMurray SAGrodzicki TBergh IMetra MEkman IAngermann CLeventhal MPitsis AAnker SDGavazzi APonikowski PDickstein KDelacretaz EBlue LStrasser FMcMurray J. Advanced Heart Failure Study Group of the HFA of the ESC: Palliative care in heart failure: A position statement from the palliative care workshop of the Heart Failure Association of the European Society of CardiologyEur J Heart Fail200911433-443. 32. Jaarsma T, Beattie JM, Ryder M, Rutten FH, McDonagh T, Mohacsi P, Murray SA, Grodzicki T, Bergh I, Metra M, Ekman I, Angermann C, Leventhal M, Pitsis A, Anker SD, Gavazzi A, Ponikowski P, Dickstein K, Delacretaz E, Blue L, Strasser F, McMurray J; Advanced Heart Failure Study Group of the HFA of the ESC: 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.
33.
Goodlin SJ. Palliative care in congestive heart failureJ Am Coll Cardiol200954386-396. 33. Goodlin SJ: Palliative care in congestive heart failure. J Am Coll Cardiol 2009;54:386–396.
34.
Gilbody SBower PFletcher JRichards DSutton AJ. Collaborative care for depression: A cumulative meta-analysis and review of longer-term outcomesArch Intern Med20061662314-2321. 34. Gilbody S, Bower P, Fletcher J, Richards D, Sutton AJ: Collaborative care for depression: A cumulative meta-analysis and review of longer-term outcomes. Arch Intern Med 2006;166:2314–2321.
35.
Katon WJLin EHVon Korff MCiechanowski PLudman EJYoung BPeterson DRutter CMMcGregor MMcCulloch D. Collaborative care for patients with depression and chronic illnessesN Engl J Med20103632611-2620. 35. Katon WJ, Lin EH, Von Korff M, Ciechanowski P, Ludman EJ, Young B, Peterson D, Rutter CM, McGregor M, McCulloch D: Collaborative care for patients with depression and chronic illnesses. N Engl J Med 2010;363:2611–2620.
36.
Katon WUnutzer JWells KJones L. Collaborative depression care: History, evolution and ways to enhance dissemination and sustainabilityGen Hosp Psychiatry201032456-464. 36. Katon W, Unutzer J, Wells K, Jones L: Collaborative depression care: History, evolution and ways to enhance dissemination and sustainability. Gen Hosp Psychiatry 2010;32:456–464.
37.
Grady KLDracup KKennedy GMoser DKPiano MStevenson LWYoung JB. Team management of patients with heart failure: A statement for healthcare professionals from The Cardiovascular Nursing Council of the American Heart AssociationCirculation20001022443-2456. 37. Grady KL, Dracup K, Kennedy G, Moser DK, Piano M, Stevenson LW, Young JB: Team management of patients with heart failure: A statement for healthcare professionals from The Cardiovascular Nursing Council of the American Heart Association. Circulation 2000;102:2443–2456.
38.
Inglis SCClark RAMcAlister FABall JLewinter CCullington DStewart SCleland JG. Structured telephone support or telemonitoring programmes for patients with chronic heart failureCochrane Database Syst Rev20108CD007228. 38. Inglis SC, Clark RA, McAlister FA, Ball J, Lewinter C, Cullington D, Stewart S, Cleland JG: Structured telephone support or telemonitoring programmes for patients with chronic heart failure. Cochrane Database Syst Rev 2010;8:CD007228.
39.
Bodenheimer TWagner EHGrumbach K. Improving primary care for patients with chronic illnessJAMA20022881775-1779. 39. Bodenheimer T, Wagner EH, Grumbach K: Improving primary care for patients with chronic illness. JAMA 2002;288:1775–1779.
40.
Peikes DChen ASchore JBrown R. Effects of care coordination on hospitalization, quality of care, and health care expenditures among Medicare beneficiaries: 15 randomized trialsJAMA2009301603-618. 40. Peikes D, Chen A, Schore J, Brown R: Effects of care coordination on hospitalization, quality of care, and health care expenditures among Medicare beneficiaries: 15 randomized trials. JAMA 2009;301:603–618.

Information & Authors

Information

Published In

cover image Journal of Palliative Medicine
Journal of Palliative Medicine
Volume 14Issue Number 12December 2011
Pages: 1317 - 1324
PubMed: 22107107

History

Published online: 6 December 2011
Published in print: December 2011
Published ahead of print: 22 November 2011
Accepted: 18 July 2011

Permissions

Request permissions for this article.

Topics

Authors

Affiliations

David B. Bekelman
Research and Genetics Sections, Department of Veterans Affairs Medical Center, Denver, Colorado.
Division of General Internal Medicine, Department of Medicine, University of Colorado School of Medicine, Aurora, Colorado.
Colorado Cardiovascular Outcomes Research, Denver, Colorado.
Carolyn T. Nowels
Division of General Internal Medicine, Department of Medicine, University of Colorado School of Medicine, Aurora, Colorado.
Jessica H. Retrum
School of Public Affairs, University of Colorado Denver, Denver, Colorado.
Larry A. Allen
Colorado Cardiovascular Outcomes Research, Denver, Colorado.
Division of Cariology, Department of Medicine, University of Colorado School of Medicine, Aurora, Colorado.
University of Colorado School of Medicine, Aurora, Colorado.
Simon Shakar
Division of Cariology, Department of Medicine, University of Colorado School of Medicine, Aurora, Colorado.
University of Colorado School of Medicine, Aurora, Colorado.
Evelyn Hutt
Research and Genetics Sections, Department of Veterans Affairs Medical Center, Denver, Colorado.
Division of General Internal Medicine, Department of Medicine, University of Colorado School of Medicine, Aurora, Colorado.
Theresa Heyborne
University of Colorado School of Medicine, Aurora, Colorado.
Deborah S. Main
Department of Health and Behavioral Sciences, University of Colorado Denver, Denver, Colorado.
Jean S. Kutner
Division of General Internal Medicine, Department of Medicine, University of Colorado School of Medicine, Aurora, Colorado.
University of Colorado School of Medicine, Aurora, Colorado.

Notes

Address correspondence to:David B. Bekelman, M.D., M.P.H.Denver VA Medical CenterResearch (151)1055 Clermont StreetDenver, CO 80220E-mail: [email protected]

Author Disclosure Statement

No competing financial interests exist.

Metrics & Citations

Metrics

Citations

Export citation

Select the format you want to export the citations of this publication.

View Options

Get Access

Access content

To read the fulltext, please use one of the options below to sign in or purchase access.

Society Access

If you are a member of a society that has access to this content please log in via your society website and then return to this publication.

Restore your content access

Enter your email address to restore your content access:

Note: This functionality works only for purchases done as a guest. If you already have an account, log in to access the content to which you are entitled.

View options

PDF/EPUB

View PDF/ePub

Full Text

View Full Text

Media

Figures

Other

Tables

Share

Share

Copy the content Link

Share on social media

Back to Top