Service Issues

What is known

The palliative care approach for hospitalised inpatients with advanced heart failure should include:

  • assessment and management of pain and dyspnoea,
  • documentation of prognosis,
  • psychosocial assessment,
  • communication with the family / patient, 
  • timely discharge planning, and
  • a palliative care consultation.

Key performance indicators exist to allow these activities to be benchmarked, and services which provide care that meets these standards have demonstrated improved quality of care, lower costs and reduced length of stay. [1] More evidence is needed about how supportive care should be integrated throughout the course of treatment of heart failure patients, how to select those interventions which will most benefit specific patients, and about how best to understand and communicate prognosis so that patients’ wishes can be integrated into goals of care. [2] Care of patients with advanced heart failure requires a multidisciplinary approach. [3-4]

Strong evidence supports multicomponent interventions that improve continuity of care, and moderate evidence supports advance care planning by skilled and trained facilitators. [5] Using advanced practice nurses and guidelines to optimise patients’ function in the outpatient setting has been shown to improve care. [6] Yet literature from the US shows that, whilst models of post-hospital care for heart failure have repeatedly been demonstrated to be effective, these models have not always been implemented. [7]

Guidelines for management of heart failure include little guidance about how to manage end-of-life symptoms. In providing end-of-life care, the important domains are: accessibility and coordination of care; ensuring clinicians have competence in symptom control and communication; education of patients and families about what to expect; emotional support and personalisation of care; and support of patients’ decision making. [8] Satisfaction with end-of-life care in advanced heart failure has not often been included as an outcome in studies of models of care. [5]

Implications for practice

  • The integration of palliative care with heart failure services is likely to evolve differently from the palliative care of patients with cancer, in part because heart failure progresses much more unpredictably and the palliative phase can be prolonged. Life-prolonging treatments and a palliative care approach can and should be offered in parallel, and collaboration between these services needs to be developed. Patients’ needs - including both physical and psychosocial needs - rather than their likely prognosis, should determine the timing for referral to specialist palliative care. [9]
  • The multidisciplinary approach is essential, given the range of services that may be needed by a patient with advanced heart failure as the disease progresses. A holistic and comprehensive approach will include: primary medical care - home nursing - personal care services - psychological support services – acute medical services - specialist palliative care services - out of hours services -ambulance / transport services - information - respite care - equipment - occupational therapy - physiotherapy - day care – pharmacy. A framework with key performance indicators for multidisciplinary care of heart failure patients in the Australian setting has recently been published. [4] It promotes evidence based treatment at all stages of the disease, and emphasises patients’ capacity for self-care.
  • The escalating palliative focus in the trajectory of heart failure has been described by the Heart Failure Association of the European Society of Cardiology [10] as follows, and this provides a useful overall description of care:
    • Stage 1: Chronic disease management phase (NYHA I–III)
      • The goals of care include active monitoring, effective therapy to prolong survival, symptom control, patient and carer education, and supported self-management
      • Patients are given a clear explanation of their condition including its name, aetiology, treatment, and prognosis
      • Regular monitoring and appropriate review according to national guidelines and local protocols
    • Stage 2: Supportive and palliative care phase: (NYHA III–IV)
      • Admissions to hospital may herald this phase
      • A key professional is identified in the community to coordinate care and liaise with specialist heart failure, palliative care, and other services
      • The goal of care shifts to maintaining optimal symptom control and quality of life
      • A holistic, multidisciplinary assessment of patient and carer needs takes place
      • Opportunities to discuss prognosis and the likely course of the illness in more detail are provided by professionals, including recommendation for completing an advance care plan
      • Out-of-hours services are documented in care plans in the event of acute deterioration
    • Stage 3: Terminal care phase
      • Clinical indicators include, despite maximal treatment, renal impairment, hypotension, persistent oedema, fatigue, anorexia
      • Heart failure treatment for symptom control is continued and resuscitation status clarified, documented, and communicated to all care providers
      • An integrated care pathway for the dying may be introduced to structure care planning
      • Increased practical and emotional support for carers is provided, continuing to bereavement support
      • Provision of and access to the same levels of generalist and specialist care for patients in all care settings according to their needs
  1. Twaddle ML, Maxwell TL, Cassel JB, Liao S, Coyne PJ, Usher BM, et al. Palliative care benchmarks from academic medical centers. J Palliat Med. 2007 Feb;10(1):86-98.
  2. Goodlin SJ, Hauptman PJ, Arnold R, Grady K, Hershberger RE, Kutner J, et al. Consensus statement: Palliative and supportive care in advanced heart failure. J Cardiac Fail. 2004 Jun;10(3):200-9.
  3. Connolly M, Beattie J, Walker D, Dancy M. End of life care in heart failure: A framework for implementation. Leicester: National End of Life Care Program, NHS; 2010
  4. National Heart Foundation of Australia. Multidisciplinary care for people with chronic heart failure: Principles and recommendations for best practice. Deakin, ACT: National Heart Foundation of Australia; 2010. (1.44MB pdf)
  5. Lorenz K, Lynn J, Dy SM, Shugarman LR, Wilkinson A, Mularski RA. Evidence for Improving palliative care at the end of life: a systematic review. Ann Intern Med. 2008 Jan 15;148(2):147-59.
  6. Case R, Haynes D, Holaday B, Parker VG. Evidence-based nursing: the role of the advanced practice registered nurse in the management of heart failure patients in the outpatient setting. Dimens Crit Care Nurs. 2010 Mar-Apr;29(2):57-62.
  7. Seow H, Phillips CO, Rich MW, Spertus JA, Krumholz HM, Lynn J. Isolation of health services research from practice and policy: the example of chronic heart failure management. J Am Geriatr Soc. 2006 Mar;54(3):535-40.
  8. Mast KR, Salama M, Silverman GK, Arnold RM. End-of-life content in treatment guidelines for life-limiting diseases. J Palliat Med. 2004 Dec;7(6):754-73.
  9. Hupcey JE, Penrod J, Fenstermacher K. A Model of Palliative Care for Heart Failure. Am J Hosp Palliat Care. 2009 Oct-Nov;26(5):399-404. Epub 2009 Apr 8.
  10. Jaarsma T, Beattie JM, Ryder M, Rutten FH, McDonagh T, Mohacsi P. 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 May;11(5):433-43.

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Last updated 18 January 2017