Symptoms and Patients' Experiences

What is known

Patients with advanced heart failure experience severe physical and psychosocial symptoms. Psychosocial issues include the experience of social isolation, fear, loss of control, life disruption, uncertainty about prognosis, and difficulty in accessing and dealing with information about their condition and in navigating the health system. [1-2] The benefit of involving social workers in addressing these problems has been identified. [1]

Depression was present in 21.5% of patients with heart failure in a meta-analysis (33.6% if screened with questionnaires, 19.5% by diagnostic interview) – with higher rates of death and trends to increased hospital service use in depressed patients. This relationship appeared to be strong and consistent. [3] Psychosocial factors that contribute to quality of life in this population are being explored, including the issue of 'hope / hopelessness' [4] and the effect of social support and spiritual beliefs on coping. [5] The evidence suggests that psychosocial and spiritual distress are a significant problem in advanced cardiac failure. Assessment and management of these sources of distress should be a priority. [5]

The commonest physical symptoms that affect patients as heart failure progresses are shared with both far advanced cancer and with other end-stage non-malignant conditions – pain, fatigue and shortness of breath. [6-8] In addition, cachexia [9] and insomnia [8] also affect many heart failure patients. It has been argued that this constellation of symptoms is a final common pathway of many conditions as patients approach the end-of-life. [6]

Implications for practice

  • Meticulous assessment of symptoms, including both physical and psychosocial aspects of the patient’s experience, should be a routine part of care in advanced heart failure.
  • As patients progress through the palliative phase, goals of care gradually shift from attempting to stabilise physical parameters, to maximising comfort.
  • Assessment tools for pain, distress, and other symptoms as used by palliative care services are available to monitor symptom burden and effects of treatment in heart failure, and can be used to supplement routine cardiological monitoring.
  1. Hopp FP, Thornton N, Martin L. The lived experience of heart failure at the end of life: a systematic literature review. Health Soc Work. 2010 May;35(2):109-17.
  2. Jeon YH, Kraus SG, Jowsey T, Glasgow NJ. The experience of living with chronic heart failure: a narrative review of qualitative studies. BMC Health Serv Res. 2010 Mar 24;10:77.
  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 Oct 17;48(8):1527-37. Epub 2006 Sep 26.
  4. Davidson PM, Dracup K, Phillips J, Daly J, Padilla G. Preparing for the worst while hoping for the best: the relevance of hope in the heart failure illness trajectory. J Cardiovasc Nurs. 2007 May-Jun;22(4):159-65.
  5. Selman L, Beynon T, Higginson IJ, Harding R. Psychological, social and spiritual distress at the end of life in heart failure patients. Curr Opin Support Palliat Care. 2007 Dec;1(4):260-6.
  6. 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 Jan;31(1):58-69.
  7. Radbruch L, Strasser F, Elsner F, Gonçalves JF, Løge J, Kaasa S, et al. Fatigue in palliative care patients--An EAPC approach. Palliat Med. 2008 Jan;22(1):13-22.
  8. Janssen DJ, Spruit MA, Wouters EF, Schols JM. Daily symptom burden in end-stage chronic organ failure: A systematic review. Palliat Med. 2008 Dec;22(8):938-48. Epub 2008 Sep 18.
  9. von Haehling S, Lainscak M, Springer J, Anker SD. Cardiac cachexia: A systematic overview. Pharmacol Ther. 2009 Mar;121(3):227-52. Epub 2008 Nov 14.

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Last updated 18 January 2017