Symptom Relief and Palliative Care during the Last Week of Life among Patients with Heart Failure: A National Register Study

Journal of Palliative Medicine

Volumn 21, Issue 3, 2018, Pages 361-367

  Årestedt, Kristofer ^a,b   Alvariza, Anette ^c,d   Boman, Kurt ^e,f   Öhlén, Joakim ^g   Goliath, Ida ^h   Håkanson, Cecilia ^c,i   Fürst, Carl Johan ^j   Brännström, Margareta ^f  

^a LINNAEUS UNIVERSITY   (Sweden)

^b LINKÖPING UNIVERSITY   (Sweden)

^c Ersta Sköndal Bräcke University   (Sweden)

^d Dalens sjukhus   (Sweden)

^e Research Unit   (Sweden)

^f UMEÅ UNIVERSITY   (Sweden)

^g UNIVERSITY OF GOTHENBURG   (Sweden)

^h KAROLINSKA INSTITUTE   (Sweden)

ⁱ SOPHIAHEMMET UNIVERSITY COLLEGE   (Sweden)

^j LUND UNIVERSITY   (Sweden)

more..

Author keywords

end of life care; heart failure; palliative care; registry study; symptom

Indexed keywords

ADULT; AGED; ARTICLE; BEREAVEMENT SUPPORT; CAUSE OF DEATH; CONTROLLED STUDY; DYSPNEA; FEMALE; HEALTH CARE PERSONNEL; HEART FAILURE; HOME CARE; HUMAN; ICD-10; MAJOR CLINICAL STUDY; MALE; NAUSEA; NURSING HOME; PAIN ASSESSMENT; PALLIATIVE THERAPY; PATIENT INFORMATION; PREVALENCE; RETROSPECTIVE STUDY; SYMPTOM ASSESSMENT; TERMINAL CARE; MORTALITY; PROCEDURES; REGISTER; SWEDEN; VERY ELDERLY;

AGED, 80 AND OVER; FEMALE; HEART FAILURE; HUMANS; MALE; PALLIATIVE CARE; REGISTRIES; SWEDEN; SYMPTOM ASSESSMENT; TERMINAL CARE;

EID: 85045200081     PISSN: 10966218     EISSN: 15577740     Source Type: Journal    
DOI: 10.1089/jpm.2017.0125     Document Type: Article

References (48)

1. Janssen DJ, Spruit MA, Uszko-Lencer NH, et al.: Symptoms, comorbidities, and health care in advanced chronic obstructive pulmonary disease or chronic heart failure. J Palliat Med 2011;14:735-743
2. Gadoud A, Jenkins SM, Hogg KJ: Palliative care for people with heart failure: Summary of current evidence and future direction. Palliat Med 2013;27:822-828
3. Abshire M, Xu J, Dennison Himmelfarb C, et al.: Symptoms and fear in heart failure patients approaching end of life: A mixed methods study. J Clin Nurs 2015;24:3215-3223
4. Nordgren L, Sorensen S: Symptoms experienced in the last six months of life in patients with end-stage heart failure. Eur J Cardiovasc Nurs 2003;2:213-217
5. Bostwick D, Wolf S, Samsa G, et al.: Comparing the palliative care needs of those with cancer to those with common non-cancer serious Illness. J Pain Symptom Manage 2017;53:1079-1084
6. Levenson JW, McCarthy EP, Lynn J, et al.: The last six months of life for patients with congestive heart failure. J Am Geriatr Soc 2000;48:S101-S109
7. Allen LA, Stevenson LW, Grady KL, et al.: Decision making in advanced heart failure: A scientific statement from the American Heart Association. Circulation 2012;125:1928-1952
8. Meyers DE, Goodlin SJ: End-of-life decisions and palliative care in advanced heart failure. Can J Cardiol 2016;32: 1148-1156
9. Sidebottom AC, Jorgenson A, Richards H, et al.: Inpatient palliative care for patients with acute heart failure: Outcomes from a randomized trial. J Palliat Med 2015;18:134-142
10. Singer AE, Goebel JR, Kim YS, et al.: Populations and interventions for palliative and end-of-life care: A systematic review. J Palliat Med 2016;19:995-1008
11. Jaarsma T, Beattie JM, Ryder M, 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
12. Morrison RS, Meier DE: The National Palliative Care Research Center and the Center to Advance Palliative Care: A partnership to improve care for persons with serious illness and their families. J Pediatr Hematol Oncol 2011;33 Suppl 2:126-131
13. Brännström M, Boman K: Effects of person-centred and integrated chronic heart failure and palliative home care. PREFER: A randomized controlled study. Eur J Heart Fail 2014;16:1142-1151
14. World Health Organization: National Cancer Control Programmes-Policies and Managerial Guidlines, 2nd ed. World Health Organization, Milan, 2002
15. Radbruch L, Payne S: White paper on standards and norms for hospice and palliative care in Europe: Part 1 Recommendations from the European Association for palliative care. Eur J Palliat Care 2009;16:278-289
16. Radbruch L, Payne S: White paper on standards and norms for hospice and palliative care in Europe: Part 2 Recommendations from the European Association for Palliative Care. Eur J Palliat Care 2010;17:22-33
17. Lundström S, Axelsson B, Heedman PA, et al.: Developing a national quality register in end-of-life care: The Swedish experience. Palliat Med 2012;26:313-321
18. Martinsson L, Heedman PA, Lundström S, et al.: Validation study of an end-of-life questionnaire from the Swedish Register of Palliative Care. Acta Oncol 2011; 50:642-647
19. Xu J, Nolan MT, Heinze K, et al.: Symptom frequency, severity, and quality of life among persons with three disease trajectories: Cancer, ALS, and CHF. Appl Nurs Res 2015;28:311-315
20. Bekelman DB, Rumsfeld JS, Havranek EP, et al.: Symptom burden, depression, and spiritual well-being: A comparison of heart failure and advanced cancer patients. J Gen Intern Med 2009;24:592-598
21. Opasich C, Gualco A: The complex symptom burden of the aged heart failure population. Curr Opin Support Palliat Care 2007;1:255-259
22. Goodlin SJ, Wingate S, Albert NM, et al.: Investigating pain in heart failure patients: The pain assessment, incidence, and nature in heart failure (PAIN-HF) study. J Card Fail 2012;18:776-783
23. Andersson S, Lindqvist O, Fürst CJ, et al.: End-of-life care in residential care homes: A retrospective study of the perspectives of family members using the VOICES questionnaire. Scand J Caring Sci 2017;31:72-84
24. Whellan DJ, Goodlin SJ, Dickinson MG, et al.: End-of-life care in patients with heart failure. J Card Fail 2014;20:121-134
25. Nekolaichuk CL, Bruera E, Spachynski K, et al.: A comparison of patient and proxy symptom assessments in advanced cancer patients. Palliat Med 1999;13:311-323
26. Herr K, Coyne PJ, McCaffery M, et al.: Pain assessment in the patient unable to self-report: Position statement with clinical practice recommendations. Pain Manag Nurs 2011;12:230-250
27. Barnes S, Gott M, Payne S, et al.: Predicting mortality among a general practice-based sample of older people with heart failure. Chronic Illn 2008;4:5-12
28. Hancock K, Clayton JM, Parker SM, et al.: Truth-telling in discussing prognosis in advanced life-limiting illnesses: A systematic review. Palliat Med 2007;21:507-517
29. Rogers A, Addington-Hall JM, McCoy AS, et al.: A qualitative study of chronic heart failure patients' understanding of their symptoms and drug therapy. Eur J Heart Fail 2002; 4:283-287
30. Buetow SA, Coster GD: Do general practice patients with heart failure understand its nature and seriousness, and want improved information? Patient Educ Couns 2001;45:181-185
31. Klindtworth K, Oster P, Hager K, et al.: Living with and dying from advanced heart failure: Understanding the needs of older patients at the end of life. BMC Geriatr 2015;15:125
32. Hjelmfors L, Strömberg A, Friedrichsen M, et al.: Communicating prognosis and end-of-life care to heart failure patients: A survey of heart failure nurses' perspectives. Eur J Cardiovasc Nurs 2014;13:152-161
33. Ivany E, While A: Understanding the palliative care needs of heart failure patients. Br J Community Nurs 2013;18: 441-445
34. Strömberg A, Luttik ML: Burden of caring: Risks and consequences imposed on caregivers of those living and dying with advanced heart failure. Curr Opin Support Palliat Care 2015;9:26-30
35. Glaser BG, Strauss AL: Awareness of Dying. New Brunswick, NJ: Aldine Transaction, 1965
36. Barclay S, Momen N, Case-Upton S, et al.: End-of-life care conversations with heart failure patients: A systematic literature review and narrative synthesis. Br J Gen Pract 2011;61:e49-e62
37. Brännström M, Hagglund L, Fürst CJ, et al.: Unequal care for dying patients in Sweden: A comparative registry study of deaths from heart disease and cancer. Eur J Cardiovasc Nurs 2012;11:454-459
38. Lee GL, Woo IM, Goh C: Understanding the concept of a ''good death'' among bereaved family caregivers of cancer patients in Singapore. Palliat Support Care 2013;11: 37-46
39. James I, Andershed B, Ternestedt BM: A family's beliefs about cancer, dying, and death in the end of life. J Fam Nurs 2007;13:226-252
40. Bratcher JR: How do critical care nurses define a ''good death'' in the intensive care unit? Crit Care Nurs Q 2010; 33:87-99
41. Gibson MC, Gutmanis I, Clarke H, et al.: Staff opinions about the components of a good death in long-term care. Int J Palliat Nurs 2008;14:374-381
42. Pratt Hopp F, Thornton N, Martin L: The lived experience of heart failure at the end of life: A systematic literature review. Health Soc Work 2010;35:109-117
43. Evangelista LS, Liao S, Motie M, et al.: Does the type and frequency of palliative care services received by patients with advanced heart failure impact symptom burden? J Palliat Med 2014;17:75-79
44. Evangelista LS, Liao S, Motie M, et al.: On-going palliative care enhances perceived control and patient activation and reduces symptom distress in patients with symptomatic heart failure: A pilot study. Eur J Cardiovasc Nurs 2014; 13:116-123
45. Evangelista LS, Lombardo D, Malik S, et al.: Examining the effects of an outpatient palliative care consultation on symptom burden, depression, and quality of life in patients with symptomatic heart failure. J Card Fail 2012;18:894-899
46. Psotka MA, McKee KY, Liu AY, et al.: Palliative care in heart failure: What triggers specialist consultation? Prog Cardiovasc Dis 2017 [Epub ahead of print; DOI: 10.1016/j.pcad.2017.05.001]
47. Dalgaard KM, Bergenholtz H, Nielsen ME, et al.: Early integration of palliative care in hospitals: A systematic review on methods, barriers, and outcome. Palliat Support Care 2014;12:495-513
48. Siouta N, van Beek K, Preston N, et al.: Towards integration of palliative care in patients with chronic heart failure and chronic obstructive pulmonary disease: A systematic literature review of European guidelines and pathways. BMC Palliat Care 2016;15:18.