Palliative care in end-stage heart failure — principles and social issues

Heart failure follows a fluctuating, unpredictable course with heavy symptoms and poor quality of life. Guidelines advise palliative and supportive care alongside life-prolonging treatment, not only in the last days.

Palliative care, as the WHO defines it, improves the quality of life of patients and families by preventing and relieving suffering. In heart failure this means expert symptom control, support for informal carers and coordinated care across settings.

Who to consider: advanced heart failure that does not respond to treatment and is not suitable for transplant or a ventricular assist device, people who can no longer manage daily activities independently, and those whose symptoms worsen despite appropriate therapy.

Recognising need: use patient-reported symptom tools. Persistently poor quality of life, escalating symptoms and low mood should prompt palliative assessment. Markers of poor prognosis include advanced age, worsening kidney function, intolerance of disease-modifying drugs, persistent hypotension, NYHA class III–IV, anaemia or iron deficiency, cachexia and persistently raised natriuretic peptide or troponin. Individual prognosis remains hard to predict.

Start early and integrate: the palliative approach runs alongside guideline-directed therapy through the chronic, crisis and terminal phases, and goals of care are revisited as the condition changes.

A multidisciplinary, shared-care model: the heart failure team provides everyday palliative care, and specialist palliative care is involved for refractory or complex symptoms, spiritual distress, recurrent admissions, frequent ICD shocks, decisions on ICD deactivation, before LVAD or transplant referral, when starting palliative inotropes, with declining function, or when patient and family disagree about goals.

Breathlessness (up to 90% in advanced heart failure): sit upright, use a hand-held fan, relaxation and breathing exercises, continue optimal heart failure therapy, and consider morphine, with a benzodiazepine for anxiety. Warn about constipation, nausea and confusion with morphine. The Korean guideline lists oxygen among palliative measures; the HFA notes little benefit from supplementary oxygen alone.

Congestion: diuretics, given intravenously or subcutaneously at home or in a hospice if needed; drains for recurrent pleural effusions or ascites.

Other symptoms: pain (about 90% in NYHA class IV), nausea (metoclopramide, with care over QT prolongation, or ondansetron), constipation (laxatives; methylnaltrexone with opioids), thirst and dry mouth, fatigue (look for anaemia and iron deficiency), and depression or anxiety in more than half (psychological therapy; SSRIs are safe but of limited proven benefit).

Review medicines: blood-pressure-lowering drugs prescribed for long-term survival can be reduced or stopped as the condition dictates, lowering the risk of falls. Prescribe anticipatory medicines (opioid, antiemetic, loop diuretic, benzodiazepine, midazolam) in oral and parenteral forms so crises can be managed at home.

Devices: discuss ICD deactivation before implantation and again over time. A magnet suspends shocks in an emergency; reprogramming deactivates the device. With CRT-D, switch off only the shock function. Deactivate after death too, and remove devices before cremation.

Communication: protected time, honest information about prognosis while sustaining hope, clear goals, and decisions documented and shared with everyone involved.

Advance care planning early, because nearly half of people with heart failure have some cognitive impairment. Cover resuscitation, ventilation, artificial nutrition and hydration, and the ICD. It reduces readmissions and makes it more likely that people are cared for, and die, where they choose. Life-sustaining treatment orders should follow multidisciplinary discussion.

Frailty (about 45%) and cachexia or sarcopenia (5–15%) are common; exercise and dietary measures alongside heart failure treatment can slow them if recognised early.

Recognise the last days of life. In the terminal phase, limit physiotherapy to maintaining balance and passive limb movements to prevent contractures.

Family and informal carers are partners in care. They face emotional distress, disrupted lives, the patient's loss of independence and social isolation, and often feel hopeless or powerless, especially around admissions and discharge. They must navigate services and manage complex medicines and devices. Assess carer burden (for example with the HF Caregiver Questionnaire) and support carers as both providers and recipients of care.

Place of care and death: most people prefer to die at home, which may need hospital-at-home arrangements and more support from primary care and community nurses. Hospice care is underused in heart failure. Achieving the preferred place of death is a quality indicator.

Cultural, religious and spiritual beliefs shape decisions and should be explored.

Legal context: advance directives, life-sustaining treatment orders and device deactivation must follow the law where you practise.

Coordination: name one professional as the point of contact for the patient and carers, and make sure hospices can give heart failure medicines and deactivate devices.

Bereavement: a named team member should support the bereaved. Grief can be complicated, particularly after a sudden cardiac death.

Barriers to overcome: the uncertain trajectory, limited time, staff training and resources, and palliative care being seen as low priority.