Patients with end stage heart failure and their carers carry a prolonged and heavy symptom burden that affects all domains of life. Moreover, access to supportive and palliative care is patchy, and recognition of the dying stage remains poor. Extending palliative care to this group of patients is now an important priority.
Patients with heart failure, and those who care for them, carry a prolonged burden of symptoms which affect all domains of life 1-6. The burden is similar to those with cancer, but with less access to supportive and palliative care. Recent years have seen a raised awareness of this issue and services which integrate palliative care for patients with heart failure are growing in the UK and elsewhere in the world, although they remain patchy7.
Reasons for poor access to supportive and palliative care.
Historically, palliative care services have grown around cancer services and, in the UK at least, with a heavy dependence on cancer charities. It is taking time to extend organisational boundaries to people with non-malignant disease and address the potential lack of skill and confidence of palliative physicians in this area. Services which have been successful have adopted an extended team model of cardiology and palliative care services working together, rather than a mutually exclusive approach.
Given the pattern of slow decline punctuated by episodes of severe decompensation and risk of death, much is made of the difficulties of estimating prognosis in heart failure. This is used by some to explain the late referral for palliative care. Successful services give less weight to prognostication, but rather, use a problem-orientated approach working alongside cardiology colleagues. Palliative care clinicians use their skills to address the problems when their services are required and discharge the patients once they are resolved. This approach helps to reassure the cardiology colleagues that the palliative care team will not stop vital optimal cardiac medication unless this is no longer tolerated.
There can be a misperception that palliative care is only for the imminently dying. This leads to referrals that are too late—if at all—and a potential reluctance to discuss palliative care referral as it is generally misconceived as telling a patient that he is about to die.
Many clinicians also lack confidence in their ability to communicate serious issues regarding different management options in the context of advanced disease without taking away a patient’s hope, and causing great distress. To address these issues, communication skills training must be recognised as important by clinicians and managers. Advanced communication skills training is now mandatory for UK oncologists enabling this sort of discussion and patient involvement in key decisions to become routine.
Just as palliative physicians may feel uncertain of their cardiology skills, so cardiology clinicians may feel uncertain of their palliative care skills. However, the majority of palliative care skills are those with which all clinicians should be competent. There is a need for the usual care team to be educated in assessment and palliation skills so that they can deal with most of the problems themselves, but refer to specialist services if the problem persists. Likewise, palliative care teams need education regarding optimal cardiac medication and diuretic management.
Symptoms in heart failure and their management
Breathlessness
Breathlessness is a cardinal symptom of heart failure and forms a key part of the assessment of New York Heart Association class. As with any symptom control, a full initial assessment is important looking for reversible / treatable features such as decompensated failure, infection, pulmonary embolus, sub-optimal management of chronic pulmonary disease. Other co-morbidities such as lung cancer may also be found. It is also important to distinguish a history of paroxysmal nocturnal dyspnoea due to decompensation from alarming nocturnal ‘breathlessness’ episodes due to sleep apnoea. The heart failure patient may have intractable breathlessness despite optimal cardiac treatment and dry weight, with no other explanatory causes. This is due to several factors including enhanced chemosensitivity resulting in abnormal ventilatory patterns. Management includes non-pharmacological approaches such as a breathing training and exercise programme along with anxiety management. Some patients may benefit from a hospital type bed where not only the head, but also the feet, can be raised to prevent slipping down in the night. A hand-held fan may also be helpful. Pharmacological approaches include low dose opioids (e.g. morphine 2.5 – 5 mg qds or morphine-equivalent dose of opioid), taking care with opioids that are renally excreted if there is renal dysfunction, and low dose benzodiazepine (e.g. lorazepam 0.5-1 mg sublingually) where panic is a prominent feature. Currently there is little evidence that oxygen administration helps the sensation of breathlessness, and unless the patient is hypoxic, should not be routinely prescribed. If sleep apnoea is demonstrated with episodes of nocturnal desaturation, nocturnal oxygen, or continuous positive airways pressure may be helpful to prevent nocturnal distress.
Fatigue
Fatigue is the other common debilitating symptom. Assessment should look for reversible factors like over-diuresis with a postural drop in blood pressure, hypokalaemia from loop and thiazide diuretics, anaemia, insomnia or depression. As with breathlessness, exercise training programmes may play an important role and should be encouraged.
Pain
Pain is a less recognised feature of end stage disease and may be due to ischaemia, gout or musculoskeletal co-morbidities. Optimisation of cardiac medication is important, and consideration of other measures such as trans-cutaneous nerve stimulation (in the absence of devices) may help. The World Health Organization (WHO) analgesic ladder is applicable. The use of colchicine or low dose steroid is preferable to Non-Steroidal Anti-Inflammatory Drugs (NSAIDs) in the management of gout. NSAIDS should be avoided in heart failure because of the risk of decompensation due to fluid retention.
Other physical symptoms
Constipation may cause much misery. Bulk laxatives such as ispaghula husk should be avoided unless there is another indication such as irritable bowel disease, as a high fluid intake is required for them to work best.
Nausea may be caused due to medication (digoxin, spironolactone), renal dysfunction, or liver engorgement and gut oedema. Attention to oral hygiene is important and they may require an anti-emetic such as a prokinetic (metoclopramide or domperidone 10-20 mg t-qds) or a small dose of haloperidol (1.5 mg once a day). Theoretically, cyclizine may impair cardiac function but evidence that this is a problem in practise is slight. It may be wise to avoid cyclizine if possible, but if a nauseated heart failure patient was end-stage and cyclizine was the only available anti-emetic then it seems inappropriate to with-hold it. Poor appetite may herald the cardiac cachexia of late stage disease or be due to poor fitting dentures and lack of energy to prepare food. A dietary assessment is important with use of protein-calorie supplementation if necessary. If, however, it is judged that cachexia is the underlying cause of anorexia and weight loss, then the patient should be advised to eat little, but regularly.
Dry skin is asignificant problem which is often overlooked. Good skin care with regular use of emollients is necessary to prevent breaks in the skin which allow a portal of entry for bacteria, leading to cellulitis.
Psychological symptoms
Depression and heart failure seem to be integrally connected with an increased prevalence compared with the general population. In addition, patients who are depressed are more likely to develop heart failure. Heart failure patients who are depressed are more likely to be admitted to hospital and die sooner. Diagnosis and treatment are, therefore, crucial. Non-pharmacological management includes exercise and cognitive behavioural therapy programmes, if available. Pharmocological therapy centres on the use of the serotonin-reuptake-inhibitors and tetracyclic antidepressants which appear to be safe. Tricyclics should be avoided because of their pro-arrhythmic potential. Anxiety is, likewise, a common problem and may respond to a full assessment, addressing specific symptoms and issues of concern. Non-pharmacological approaches to anxiety management should be used, and intermittent use of benzodiazepines for panic may be helpful. Maintenance of anxiety states may benefit from serotonin-reuptake-inhibitors rather than long-term benzodiazepines which may increase the risk of memory loss and falls.
Care of the dying.
Recognition of the dying phase
Patients with heart failure may have several episodes of decompensation, often triggered by an intercurrent event such as infection, where they are severely ill, but then respond to hospital treatment. However, as the disease progresses, decompensation may occur spontaneously, ACE-inhibition and beta-blockade are no longer tolerated due to hypotension, and diuretic requirements increase or frank diuretic resistance may occur. Renal failure adds to the difficulty of optimising medication. Recurrent ‘revolving door’ admissions are often a feature of the patient nearing the end of life. Other prognostic markers such as a rising Brain Natriuretic Protein (BNP) or falling serum albumin and persistently low serum sodium may also help, if available. In this context, the patient who fails to respond to optimal treatment in the first few days after decompensation, or becomes bedbound, unable to manage oral medication, is no longer able to eat but only manages to sip water, and is progressively more fatigued and less responsive, is likely to be in the dying phase.
General palliative care measures for the dying are transferable to the heart failure patient and are not discussed here. However, particular issues may need to be addressed. Pulmonary oedema is not necessarily a problem, especially when the patient is unable to drink. But if it is, parenteral administration of a loop diuretic (either by stat injections or continuous infusion intravenously or subcutaneously) may be needed in addition to an anti-secretory such as hyoscine. Discussions regarding the futility of an attempt at cardio-pulmonary arrest may be needed, particularly if a patient or their family have unrealistic expectations. If an internal cardioverter device is present, similar discussions related to its reprogramming to pacemaker mode should take place, if not done already to prevent distressing multiple activations as the patient dies. Cheynes-Stoke’s respirations may be marked to the extent of causing distressing apnoeic induced arousals in the patient. These can usually be minimised by small doses of opioid medication.
Conclusions
Optimised medical, device and surgical therapy for the heart failure patient has made a massive impact on quality and quantity of life. This approach should be coupled with access to supportive and palliative care to address the remaining symptom burden experienced by such people and their families. A problem, rather than prognosis approach will ensure timely access to services. An extended team approach between cardiology and palliative care will ensure the best management for both treatment of the heart failure itself and its unwanted effects on the person involved. Excellent communication skills are needed to enable clinicians to have the courage and sensitivity to inform the patient of the stage of their illness and discuss the aims for possible treatment in the light of the issues that the patient and their family consider important. If this does not happen, then patients with heart failure will continue to have poor understanding of their disease, be denied best symptom control, support for their families, and the opportunity to make plans for their own death. It is said, “you have to have cancer to have good palliative care”—this should no longer be acceptable.
| Barriers to palliative care access |
| Palliative care services are traditionally developed around oncology services |
| Uncertainties regarding prognosis lead to late referral to palliative care, or none at all |
| Misperception that palliative care is only for the imminently dying contributes to late referral |
| Poor confidence regarding palliative care skills (cardiologists) |
| Poor confidence regarding cardiology skills (palliative physicians) |
| Lack of communication skills (cardiologists) |
| Learning point: Symptoms in heart failure patients |
| Symptoms affect all areas of the patient’s life: physical, psychological, social, spiritual and financial |
| Symptoms may be experienced over a prolonged time |
| Those looking after the patient such as family and friends may also require support |
| A full assessment is needed of needs of both patient and those who care for them |
| An extended team approach between cardiology and palliative care seems to be effective. |
| Care of the dying |
| Recognition of the dying phase can be difficult but not always impossible |
| Open and gentle discussion regarding the stage of the illness is required |
| Pulmonary oedema can be a problem, and loop diuretics administered by intravenous or subcutaneous infusion |
| In general, the skills used to care for other dying patients are transferable to those dying with heart failure |
| Do not resuscitate orders and re-programming’ of implantable cardioverter devices (if present) should be arranged |
Author Bio
Miriam Johnson is Senior Lecturer in Palliative Medicine at Hull-York Medical School and Honorary Consultant to St. Catherine’s Hospice. Her research interests include breathlessness and palliation for patients with heart failure. In conjunction with her local cardiology service, she has developed one of the UK’s first integrated cardiology -palliative care services for patients with heart failure.
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