Key messages

  • Heart failure is a common end stage outcome for many people with cardiovascular disease and is becoming more prevalent in Australia. [1]
  • There are many different trajectories in heart failure, ranging from sudden cardiac death at any point during the illness to either alternating periods of stability with periods of loss of control of symptoms, or prolonged periods of disability and distress with poor quality of life.
  • Advance care planning is an important factor in some people in heart failure as they may have complex decisions to make about the continuation or cessation of treatment.
  • The most common symptoms experienced in advanced heart failure are pain, dyspnoea, anxiety, and depression.
  • Patients and heath care professionals lack knowledge about the effects of ICDs in the last day of life and the significant discomfort they can cause.

Evidence summary

Prevalence and definition

An estimated 1.2 million Australians over the age of 18 have one or more conditions associated with cardiovascular disease, and of those nearly 105 000 people have heart failure. [1] Nearly two thirds of those with heart failure are over the age of 65. [1] Heart failure is a collection of symptoms caused by a 'structural and/or functional cardiac abnormality, resulting in a reduced cardiac output and/or elevated intracardiac pressures at rest or during stress'. [2] p.898 Many people with cardiovascular disease will develop heart failure and with interventions and pharmacological management, people with heart failure are living longer but despite the improvements in treatment, heart failure remains a progressive clinical condition which will lead to advanced chronic heart failure and finally end stage heart failure and death. [3]

Heart failure is commonly classified according to the severity of symptoms experienced by the person using the New York Heart Association (NYHA) functional classification system which classifies both patient symptoms and objective assessment. [2,4] The NYHA divides heart failure into four classes, ranging from class I, a person having no symptoms during normal physical activity to class IV, a person having severe dyspnoea at rest and severe impedance of their functional ability. [2] In 2018 the Heart Failure Association of the European Society for Cardiology updated the definition of advanced chronic heart failure to include not only clinical symptoms but also additional prognostic markers and presence of end stage organ damage. [5]

Advanced heart failure is defined as:

  • Severe and persistent symptoms (NYHA III or IV), 
  • Severe cardiac dysfunction defined by a reduced Left Ventricular Ejection Fraction less than 30 per cent, isolated Right Ventricular failure or non-operable severe valve abnormalities or congenital abnormalities 
  • Episodes of pulmonary or systemic congestion requiring high-dose intravenous diuretics (or diuretic combinations) or episodes of low cardiac output requiring inotropes or vasoactive drugs causing more than one unplanned visit or hospitalization in the last 12 months.
  • Severe impairment of exercise capacity with inability to exercise estimated to be of cardiac origin.
  • Other organ dysfunction due to heart failure (e.g. liver or kidney dysfunction) or type 2 pulmonary hypertension may be present but are not required. [5]

Heart failure symptoms may be exacerbated by other life-limiting illnesses such as such as severe respiratory disease, liver or renal failure and these patients may have more severe care needs. [5] Advanced heart failure is considered unstable as more advanced treatments are required to manage symptoms and over time will lead to end-stage heart failure, where treatments focused on maintaining cardiac function are no longer useful. [5]

Prognosis and need for palliative care

Prognosis in any chronic disease can be challenging and heart failure is similar. There is increasing recognition of the need to involve palliative care in earlier stages of heart failure. [3,6] There are many different trajectories in heart failure, ranging from sudden cardiac death at any point during the illness to either alternating periods of stability with periods of loss of control of symptoms, or prolonged periods of disability and distress with poor quality of life. [4] Sudden cardiac death is seen less commonly due to the increasing use of implantable cardiac devices (ICD) and beta blockers. [7]

A number of prognostic tools have been developed and tested in heart failure and those recommended for advanced heart failure, non-hospitalised patients are the Heart Failure Survival Score (HFSS), the Metabolic Exercise test data combined with Cardiac and Kidney Indexes (MECKI) score and the Meta-Analysis Global Group in Chronic Heart Failure (MAGGIC). [5] Another prognostic tool, the Seattle Heart Failure Model may not be as sensitive in advanced heart failure. [5]

Recent heart failure guidelines recognise the need for palliative care options for patients in advanced and end stage heart failure, indicating that assessment of symptoms and care needs should be initiated early. [5] A recent position statement from the European Association of Palliative Care recommends the Needs Assessment Tool: Progressive Disease- Heart Failure as a useful tool to recognise when a person with heart failure may benefit from palliative care. [8] The natural course of the advancing heart failure means it is characterised by acute decompensation followed by periods of stability where a person may respond favourably to interventions. A systematic review found that fewer than six per cent of heart failure patients who could have been referred to palliative care services were actually referred. [9] Recognising the significance and irreversibility of multi-organ failure occurring in advanced heart failure may stop inappropriate investigation and invasive management, which can contribute significantly to patients’ and families’ distress in end stage heart failure. [10]

Advance care planning is an important component of palliative care and can allow a person to complete an Advance Care Directive and discuss their end of life preferences including treatment options and limitations. [8] A recent systematic review examined the impact of advance care plans (ACP) for patients with heart failure. [11] ACP improved quality of life, patient satisfaction with end of life care and end of life communication. [11] The authors recommend that the introduction of ACP be done after a major event in the disease trajectory, such as a hospital admission, that follow-up be scheduled to continue the discussions around ACP and to include family and carers as well as the broader multidisciplinary team. [11]

Symptom management

As advanced heart failure progresses the burden of symptoms increases. The most common symptoms experienced by a person in advanced heart failure are pain, dyspnoea, fatigue, and depression. [3,7] Like any other life-limiting illness, heart failure patients may not exhibit these symptoms or may have others which affect them more acutely, which makes individual assessment and treatment of diagnosed symptoms important. CareSearch Clinical Evidence-Patient Management pages describe the evidence on supporting the common symptoms seen at the end of life. The following section outlines the evidence to managing these common symptoms in advanced heart failure.


Pain is a common symptom at the end of life, including for those with heart failure. [12] It can be associated with heart disease, peripheral neuropathy or from interventions such as surgery. [4] Managing pain will depend on the type of pain and response to treatment. Particular care should be taken with certain analgesics, such as NSAIDs which can cause renal dysfunction and medications which can disrupt the QT interval, such as methadone and amitriptyline. [2]


Opioids for palliation of dyspnoea have been well studied. They are a safe and effective approach for patients with both malignant and non-malignant causes of dyspnoea. [13] A recent systematic review examining the use of opioids for the treatment of dyspnoea in heart failure found low quality evidence to support its use. Clinical practice guidelines suggest using opioids to manage dyspnoea with caution. [2] Other suggested management approaches include increasing diuretic medications to reduce congestion. [2] There is limited evidence to support the use of oxygen in non-hypoxic patients, although patients may report feeling better with oxygen in situ and some patients with advanced heart failure will experience hypoxia. [5] A recent systematic review of oxygen use in heart failure found limited evidence to support the use of oxygen in advanced heart failure. [14]

Due to the complex nature of heart failure a non-pharmacological approach to management may be beneficial. In general these interventions focus on physical activity (such as exercise), breathing techniques and technology, such as hand held fans. [15] These techniques supported by multidisciplinary palliative care may be useful. [15,16]

Anxiety and depression

Anxiety and depression are common symptoms in advanced heart failure. [7] Managing these symptoms in the advanced phase of the illness can be important, as they are sometimes seen as lower priority compared to cardiac symptoms. [8] Chronic or acute dyspnoea can contribute to anxiety and therefore managing dyspnoea may improve anxiety levels. [14] Treating depression with standard approaches in heart failure patients is appropriate. [4,17] A recent review comparing standard treatment options in depression found there was some benefit in exercise training and cognitive behavioural therapy over medication therapy but too little difference to make a recommendation for practice. [17]

Cessation of treatment

As advanced heart failure progresses continuing treatments which minimise symptoms and focus on comfort is often the primary goal of care. [8] Potential treatment options for heart failure patients such as non-invasive ventilation and left ventricular assist devices may be part of the spectrum of palliation for some patients, and shared protocols for managing such treatments and negotiating goals of care are needed. The use of implantable cardioverter defibrillators (ICD) raises the issue of deactivation to prevent ICD storm in a dying patient, where the device repeatedly shocks a person and can be very painful. [8] It is estimated that over 30 percent of patients with ICDs will experience one or multiple discharges (or shocks) in the last 24 hours of life. [18] A recent review established that conversations with patients about deactivating their ICD were uncommon. [18] There is a lack of knowledge for both patients and heath care professionals about the effects of ICDs in the last day of life and the significant discomfort they can cause. [2,10,18]

Evidence gap

  • Prognostic tools that assist in the recognition of the need for referral to palliative care continues to be an area of research interest. Further definitions separating advanced heart failure and end stage heart failure may be useful. [5]
  • Specific guidance on best practice interventions in managing pain and dyspnoea in advanced heart failure are needed. [8]
  • The development of specialised roles to support people with advanced heart failure are in the early stages of implementation and further research is needed to establish their utility in the clinical setting.
  • Protocols for the deactivation of ICDs in end stage heart failure are required as well as guidelines to assist in communication with patients about deactivation. [18]

  1. Australian Institute of Health Welfare (AIHW). Cardiovascular disease [Internet]. 2019 [updated 2019 Aug 30; cited 2019 Dec 11].
  2. Ponikowski P, Voors AA, Anker SD, Bueno H, Cleland JGF, Coats AJS, et al. 2016 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 Jul 14;37(27):2129-2200. doi: 10.1093/eurheartj/ehw128. Epub 2016 May 20.
  3. McIlvennan CK, Allen LA. Palliative care in patients with heart failure. BMJ. 2016 Apr 14;353:i1010. doi: 10.1136/bmj.i1010.
  4. Pantilat SZ, Steimle AE, Davidson PM. Advanced heart disease. In: Cherny N, Fallon M, Kaasa S, Portenoy RK, Currow DC, editors. Oxford Textbook of Palliative Medicine. 5th ed. Oxford: Oxford University Press; 2015.
  5. Crespo-Leiro MG, Metra M, Lund LH, Milicic D, Costanzo MR, Filippatos G, et al. Advanced heart failure: a position statement of the Heart Failure Association of the European Society of Cardiology. Eur J Heart Fail, 2018. 20(11): p. 1505-1535.
  6. Lewin WH, Schaefer KG. Integrating palliative care into routine care of patients with heart failure: models for clinical collaboration. Heart Fail Rev. 2017 Sep;22(5):517-524. doi: 10.1007/s10741-017-9599-2.
  7. Yu DS, Li PW, Chong SO. Symptom cluster among patients with advanced heart failure: a review of its manifestations and impacts on health outcomes. Curr Opin Support Palliat Care. 2018 Mar;12(1):16-24. doi: 10.1097/SPC.0000000000000316.
  8. Sobanski PZ, Alt-Epping B, Currow DC, Goodlin SJ, Grodzicki T, Hogg K, et al. Palliative care for people living with heart failure: European Association for Palliative Care Task Force expert position statement. Cardiovasc Res. 2020 Jan 1;116(1):12-27. doi: 10.1093/cvr/cvz200.
  9. Asano R, Abshire M, Dennison-Himmelfarb C, Davidson PM. Barriers and facilitators to a ‘good death’ in heart failure: An integrative review. Collegian. 2019 Dec;26(6):651-665. doi: 10.1016/j.colegn.2019.09.010.
  10. Schichtel M, Wee B, Perera R, Onakpoya I, Albury C, Barber S. Clinician-targeted interventions to improve advance care planning in heart failure: a systematic review and meta-analysis. Heart. 2019 May 22. pii: heartjnl-2019-314758. doi: 10.1136/heartjnl-2019-314758. [Epub ahead of print]
  11. Schichtel M, Wee B, Perera R, Onakpoya I. The Effect of Advance Care Planning on Heart Failure: a Systematic Review and Meta-analysis. J Gen Intern Med. 2019 Nov 12. doi: 10.1007/s11606-019-05482-w. [Epub ahead of print]
  12. Moens K, Higginson IJ, Harding R; EURO IMPACT. 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 Oct;48(4):660-77. Epub 2014 May 5.
  13. Chin C, Booth S. Managing breathlessness: a palliative care approach. Postgrad Med J. 2016 Jul;92(1089):393-400. doi: 10.1136/postgradmedj-2015-133578. Epub 2016 Apr 6.
  14. Asano R, Mathai SC, Macdonald PS, Newton PJ, Currow DC, Phillips J, et al. Oxygen use in chronic heart failure to relieve breathlessness: A systematic review. Heart Fail Rev. 2019 Jun 19. doi: 10.1007/s10741-019-09814-0. [Epub ahead of print]
  15. Brighton LJ, Miller S, Farquhar M, Booth S, Yi D, Gao W, et al. Holistic services for people with advanced disease and chronic breathlessness: a systematic review and meta-analysis. Thorax. 2019 Mar;74(3):270-281. doi: 10.1136/thoraxjnl-2018-211589. Epub 2018 Nov 29.
  16. Datla S, Verberkt CA, Hoye A, Janssen DJA, Johnson MJ. Multi-disciplinary palliative care is effective in people with symptomatic heart failure: A systematic review and narrative synthesis. Palliat Med. 2019 Sep;33(8):1003-1016. doi: 10.1177/0269216319859148. Epub 2019 Jul 15.
  17. Das A, Roy B, Schwarzer G, Silverman MG, Ziegler O, Bandyopadhyay D, et al. Comparison of treatment options for depression in heart failure: A network meta-analysis. J Psychiatr Res. 2019 Jan;108:7-23. doi: 10.1016/j.jpsychires.2018.10.007. Epub 2018 Oct 25.
  18. Herman M, Horner K, Ly J, Vayl Y. Deactivation of Implantable Cardioverter-Defibrillators in Heart Failure: A Systematic Review. J Hosp Palliat Nurs. 2018 Feb;20(1):63-71.

Last updated 27 August 2021