Heart failure (HF) is a progressive condition that is more malignant than most cancers [#stewart-s-macintyre-k-holec-d-et-al.-2001] and is the typical end stage of most cardiac diseases. 

There are three distinct phases of this condition which most people will likely progress through:

1. Chronic disease phase – diagnosis through disease management
2. Supportive and palliative phase – management should shift from curative to symptom control
3. Terminal phase – patient’s death is imminent

Patients who fit most of the descriptions shown in the table below may be in the palliative or terminal phase of the condition and need a change in the approach and goals of management.

Table 1: Identifiers of end stage heart failure

HF prognosis is difficult since sudden death can occur at any stage of disease progression. The end-stage period can last months to years. 

Patients with end-stage HF can experience many and varied symptoms and features including, but not limited to:  

• Breathlessness
• Pain
• Fatigue
• Cachexia
• Loss of appetite
• Anxiety, depression
• Constipation
• Nausea
• Renal failure
• Sleep difficulties

It is important to review these symptoms and the response to any management plan at each interaction with the patient and family.

Through prevention and relief of suffering, palliation aims to improve the quality of life of patients and their families facing problems associated with life threatening illness. This includes early identification and management of physical, psychosocial and spiritual concerns.

Ongoing, open, direct and compassionate discussions can ease fears about pain, losing dignity, abandonment and the unknown. Discussions about end of life issues should be frequently revisited.

Breathlessness is very common and underlying reversible causes such as anaemia should be treated.

Causes of breathlessness may include:

• Respiratory: Pulmonary oedema, pleural effusions, pulmonary embolism, pneumonia and chronic obstructive pulmonary disease (COPD)
• Cardiac: Cardiac ischaemia and poor cardiac output
• Psycho-social: Anxiety, social stressors, suboptimal coping mechanisms and fear
• Other: Muscle fatigue, anaemia

Non pharmacological measures to manage breathlessness

Breathlessness can be very distressing and a supportive environment to minimize anxiety along with good communication can help calm the patient and those close to them.

The following approaches may help patients cope with dyspnoea:

• Perception of dyspnoea may be relieved by providing an environment with circulating air, e.g., the use of a fan, or being near an open window
• Breathing techniques may help to control tachypnoea and anxiety,(such as prolonged expiratory phase breathing or pursed lips to slow breathing
• Home oxygen may be considered for those responsive to supplemental oxygen and who are receiving maximal treatment for reversible causes. Note that some patients may be eligible for a home oxygen subsidy.

Renal failure is a common feature of end-stage HF, and has many causes and potential complications. If there are any concerns, consultation with a renal or a palliative care service is recommended.

Whilst the balance between the control of fluid overload and renal function in HF is acknowledged, end of life care may necessitate less rigid fluid balance to optimise symptom control (e.g., to avoid recurrent pulmonary oedema a deterioration in renal function may be considered acceptable as dialysis is usually futile in this situation). Ensure that the patient, family and health professionals involved with care all understand the agreed approach to symptom control.

End-stage HF fluid management can be challenging, leading to altered absorption, pharmacokinetics and worsening renal failure. The patient’s medications will need to be reviewed and titration of diuretics or change of diuretic should be considered. A philosophical decision should be made regarding the balance between patient comfort in controlling symptoms of intractable pulmonary congestion and the possible side effect relating to deterioration in renal function.

Non pharmacological management includes:

• Fluid restriction and consumption (offer ice rather than cups of water to control thirst)
• Salt intake restrictions as a high intake can exacerbate fluid overload
• Avoidance of non steroidal anti-inflammatory medications as these exacerbate fluid retention

Chest pain can be a debilitating feature of ischaemic heart disease. Ensure the patient has been medically reviewed and that there is no other intervention possible. Home oxygen may relieve symptoms in conjunction with opioid analgesia. If there are any concerns about pain management, such as an inadequate response or unacceptable side effects, facilitate a further review by the patient’s palliative care or medical team.

Constipation can be caused by diuretics, opioid analgesics, decreased mobilisation, and decreased fluid or oral intake. It is important to treat signs of constipation early and also avoid fibre based products because they require increased fluid to work and patients may have decreased gut motility. Patients may take a faecal softener such as Coloxyl® with/without senna, or Movicol®, or other alternatives considered to be effective.

The appropriate management of implantable cardioverter defibrillators (ICDs) when patients are in the palliative phase of their disease is essential. Patients with end-stage HF may commonly have repeated ventricular arrhythmias as the heart fails. Recurrent ICD shocks may no longer contribute to the quality of life, but instead cause undue distress, including physical suffering and anxiety to the patient and their carers. It is essential to ensure that the management principles of palliation are met and that there are appropriate discussions with patients who are in the palliative stage of HF.

It is recommended that there is discussion with the cardiologist who implanted the ICD or the cardiologist providing ICD aftercare to determine whether the whole defibrillator is turned off or just the cardioversion component. All defibrillators have a pacemaker function and some patients may be pacemaker dependent (see Implantable devices). Discussion should also take place with the patient and their family about the implications for turning off the defibrillation and anti-tachycardia pacing functions of the ICD, i.e., if the patient develops a life threatening arrhythmia no active resuscitation will be initiated. The family and patient should be informed that the procedure to deactivate that defibrillator function is painless. Discussion may occur about turning off the baseline pacing, if clinically indicated.

Patients and their families or carers may have a range of issues that need to be addressed or at least recorded for communication with other members of the team.  The end-stage care planning checklist is a useful tool to ensure that all appropriate referrals are made, ranging from supporting activities of daily living to pastoral care, and that all advanced care planning has been discussed and documented.

Frailty is a strong predictor of outcomes in people with cardiovascular disease and in particular those with heart failure. See frailty