The need for palliative and support care services for heart failure patients in the community

Abstract

Background:

Palliative care is a care option considered appropriate for those with heart failure, but is uncommon partially due to a lack of timely identification of those needing palliative care. A standard mechanism that triggers which heart failure patients should receive palliative care is not available. The Gold Standards Framework (GSF) identifies those needing palliative care but has not been investigated with heart failure patients.

Objectives:

To describe palliative care provided in the community and determine whether the GSF can identify heart failure patients in need of palliative care.

Methods:

Descriptive study. A total of 252 heart failure patients in the community completed a demographic characteristics questionnaire, the Edmonton symptom assessment scale-revised and the Minnesota living with heart failure questionnaire. Clinical data were collected from the medical chart and the primary physician completed the GSF prognostic indicator guidance.

Results:

Participants had a mean age of 76.9 years (standard deviation 10.9), most at New York Heart Association level III (n=152, 60%). Fewer than half received pain medications (n=76, 30%), anxiolytics (n=35, 14%), antidepressants (n=64, 25%) or sleep medications (n=65, 26%). Eight patients spoke with a psychologist or psychologist (3%). One had an advanced directive and 16 (6%) had a record of discussions with their family caregivers. Three (1%) had end-of-life discussions with their healthcare providers. Most healthcare providers responded ‘no’ to the ‘surprise question’ (n=160, 63%). Sensitivity and specificity of the gold standards framework was poor.

Conclusions:

Few community dwelling heart failure patients received most aspects of palliative care. The gold standards framework was not a good indicator of those who should receive palliative care.

Keywords

Heart failure community palliative care

Get full access to this article

View all access options for this article.

References

Ziaeian

Fonarow

GC.

Epidemiology and aetiology of heart failure. Nat Rev Cardiol 2016; 13: 368–378.

Ponikowski

Voors

Anker

, et al. ESC Guidelines for the diagnosis and treatment of acute and chronic heart failure: the Task Force for the Diagnosis and Treatment of Acute and Chronic Heart Failure of the European Society of Cardiology (ESC). Developed with the special contribution of the Heart Failure Association (HFA) of the ESC. Eur Heart J 2016; 37: 2129–2200.

Jones

Roalfe

Adoki

, et al. Survival of patients with chronic heart failure in the community: a systematic review and meta-analysis. Eur J Heart Fail 2019; 21: 1306–1325.

Moens

Higginson

Harding

, et al. Are there differences in the prevalence of palliative care related problems in people living with advanced cancer and eight non-cancer conditions? A systematic review. J Pain Symptom Manage 2014; 48: 660–677.

Cagle

Bunting

Kelemen

, et al. Psychosocial needs and interventions for heart failure patients and families receiving palliative care support: a systematic review. Heart Fail Rev 2017; 22: 565–580.

Gadoud

Kane

Macleod

, et al. Palliative care among heart failure patients in primary care: a comparison to cancer patients using English family practice data. PLoS One 2014; 9: e113188. DOI: 10.1371/journal.pone.0113188.

Riley

Beattie

JM.

Palliative care in heart failure: facts and numbers. ESC Heart Fail 2017; 4: 81–87.

Yancy

Jessup

Bozkurt

, et al.; American College of Cardiology Foundation; American Heart Association Task Force on Practice Guidelines. 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. J Am Coll Cardiol. 2013; 62: e147–e239.

Braun

Grady

Kutner

, et al. Palliative care and cardiovascular disease and stroke: a policy statement from the American Heart Association/American Stroke Association. Circulation 2016; 134: e198–e225.

10.

World Health Organization. WHO Definition of Palliative Care. 2020. https://www.who.int/cancer/palliative/definition/en/ (accessed 7 August 2020).

11.

McConnell

Diffin

Fitzsimons

, et al. Palliative care and heart failure: Can implementation science help where the evidence alone has failed? Eur J Cardiovas Nurs 2020; 19: 190–191.

12.

Psotka

McKee

Liu

, et al. Palliative care in heart failure: what triggers specialist consultation? Prog Cardiovasc Dis 2017; 60: 215–225.

13.

Chuzi

Pak

Desai

, et al. Role of palliative care in the outpatient management of the chronic heart failure patient. Curr Heart Fail Rep 2019; 16: 220–228.

14.

Datla

Verberkt

Hoye

, et al. Multi-disciplinary palliative care is effective in people with symptomatic heart failure: a systematic review and narrative synthesis. Palliat Med 2019; 33: 1003–1016.

15.

Schichtel

Wee

Perera

, et al. The effect of advance care planning on heart failure: a systematic review and meta-analysis. J Gen Intern Med 2019; 35: 874–884.

16.

Chen

Jin

, et al. Effect of palliative care for patients with heart failure: a systematic review and meta-analysis. Int Heart J .2018; 59: 503–509.

17.

Kheirbek

Alemi

Wojtusiak

, et al. Impact of hospice and palliative care service utilization on all-cause 30-day readmission rate for older adults hospitalized with heart failure. Am J Hosp Palliat Med. 2019; 36: 623–629.

18.

Seow

O’Leary

Perez

, et al. Access to palliative care by disease trajectory: a population-based cohort of Ontario decedents. BMJ Open 2018; 8: e021147. DOI: 10.1136/bmjopen-2017-02114.

19.

Cross

Kamal

Taylor

DH , et al. Hospice use among patients with heart failure. Cardiac Fail Rev 2019; 5: 93–98.

20.

Slavin

Warriach

HJ.

The right time for palliative care in heart failure: a review of critical moments for palliative care intervention. Rev Esp Cardiol 2020; 73: 78–83.

21.

Straw

Byrom

Gierula

, et al. Predicting one-year mortality in heart failure using the ‘Surprise Question’: a prospective pilot study. Eur J Heart Fail 2019: 21: 227–234.

22.

Janssen

DJA

Ament

SMC

Boyne

, et al. Characteristics for a tool for timely identification of palliative needs in heart failure: the views of Dutch patients, their families and healthcare professionals, Eur J Cardiovasc Nurs. Epub ahead of print 5 May 2020. DOI: 10.1177/1474515120918962.

23.

Quinn

Thomas

Using the Gold Standards Framework to deliver good end of life care. Nurs Manage 2017; 23: 20–25.

24.

Thomas

Armstrong

WJA

Tanner

Evidence that use of GSF improves early identification of patients in different settings. GSF Update on Evaluations and Evidence no. 1. September 2016. https://www.goldstandardsframework.org.uk/cd-content/uploads/files/1%20%20vs%204%20%20Evidence%20that%20use%20of%20GSF%20Improves%20identification.pdf (accessed 7 August 2020).

25.

Bujang

Adnan

TH.

Requirements for minimum sample size for sensitivity and specificity analysis. J Clin Diagnost Res 2016; 10: YE01–YE06.

26.

Bruera

Kuehn

Miller

, et al. The Edmonton symptom assessment system (ESAS): a simple method for the assessment of palliative care patients. J Palliat Care 1991; 7: 6–9.

27.

Timmon

MacIve

Tibbles

, et al. Using heart failure instruments to determine when to refer heart failure patients to palliative care J Palliat Care 2013; 29: 217–222.

28.

Wong

FKY

AYM

Lee

, et al. Effects of a transitional palliative care model on patients with end-stage heart failure: a randomized controlled trial. Heart 2016: 102: 1100–1108. DOI: 10.1136/heartjnl-2015-308638.

29.

Rector

Cohn

JN.

Assessment of patient outcome with the Minnesota Living with Heart failure Questionnaire: reliability and validity during a randomized, double blind, placebo-controlled trial of pimobendan. Am Heart J 1992; 124: 1017–1025.

30.

Sobanski

Alt-Epping

Currow

, et al. Palliative care for people living with heart failure – European Association for Palliative Care Task Force expert position statement. Cardiovasc Res 2020; 116: 12–27.

31.

Dhingra

Barrett

Knotkova

, et al. Symptom distress among diverse patients referred for community based palliative care: sociodemographic and medical correlates. J Pain Symptom Manage 2018; 55: 290–296.

32.

Roch

Palzer

Zetzl

Utility of the integrated palliative care outcome scale (IPOS): a cross sectional study in hospitalized patients with heart failure. Eur J Cardiovas Nurs 2020. Epub ahead of print 5 May 2020. DOI: 10.1177/1474515120919386.

33.

Dionne-Odom

Hooker

Bekelman

, et al. Family caregiving for persons with heart failure at the intersection of heart failure and palliative care: a state of the science review. Heart Fail Rev 2017; 22: 543–557.

34.

Klinedinst

Kornfield

Hadler

RA.

Palliative care for patients with advanced heart disease. J Cardiothorac Valv Anesth 2019; 33: 833–843.

35.

Wiskar

Celi

Walley

, et al. Inpatient palliative care referral and 9-month hospital readmission in patients with congestive heart failure: a linked nationwide analysis. J Intern Med 2017; 282: 445–451.

36.

Wachterman

Pilver

Smith

, et al. Quality of end of life care provided to patients with different serious illnesses. JAMA Intern Med 2016; 176: 1095–1102.

37.

Butler

Advanced directives among hospitalized patients with heart failure. JACC: Heart Fail 2015: 3: 112–121.

38.

Israel Ministry of Health. Palliative care (supportive care) for patients with incurable diseases. 2020. https://www.health.gov.il/Subjects/Geriatrics/Pages/palliativeCare.aspx (accessed 7 August 2020) (in Hebrew).

39.

Chow

Senderovich

It’s time to talk: challenges in providing integrative palliative care in advanced congestive heart failure. A narrative review. Curr Cardiol Rev 2018; 14: 128–137.

40.

Stocker

Hanock

, et al. Should heart failure be regarded as a terminal illness requiring palliative care? A study of heart failure patients’, carers’ and clinicians’ understanding of heart failure prognosis and its management. BMJ Support Palliat Care 2017; 7: 464–469.

41.

Wiskar

Torna

Rush

Palliative care in heart failure. Trends CV Med 2018; 28: 445–450.

42.

AYM

Wong

FKY

. Effects of a home based palliative heart failure program on quality of life, symptom burden, satisfaction and caregiver burden: a randomized controlled trial. J Pain Symptom Manage 2018; 55: 1–11.

43.

Aaronson

George

Ouchi

, et al. The surprise question can be used to identify heart failure patients in the emergency department who would benefit from palliative care. J Pain Symptom Manage 2019; 57: 944–951.

44.

Straw

Byrom

Gierula

, et al. Predicting one year mortality in heart failure using the ‘Surprise Question’: a prospective pilot study. Eur J Heart Fail 2019; 21: 227–234.