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Palliative Care for Non-cancer Patients$

Julia Addington-Hall and Irene Higginson

Print publication date: 2001

Print ISBN-13: 9780192629609

Published to Oxford Scholarship Online: November 2011

DOI: 10.1093/acprof:oso/9780192629609.001.0001

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Heart disease

Heart disease

(p.30) Chapter 3 Heart disease
Palliative Care for Non-cancer Patients

J. Simon

R. Gibbs

Oxford University Press

Abstract and Keywords

This chapter considers the potential for palliative care in heart disease. It addresses the following questions: Which patients are likely to benefit from palliative care? How many patients are likely to be affected? What problems do they have? It then presents a summary of research on the effectiveness of interventions/services for heart failure and intractable angina. This is followed by discussions of priorities for further research and implications for clinical management.

Keywords:   palliative care, heart failure, intractable angina, clinical management


Heart disease is a common cause of death and a major public health issue. This chapter addresses the potential for palliative care in the two commonest forms of heart disease.

Which patients are likely to benefit from palliative care?

Chronic heart failure

Most cardiovascular diseases which affect the heart, such as hypertension, coronary artery disease, significant heart valve stenosis or regurgitation, and primary myocardial diseases, cause myocardial damage resulting in chronic heart failure. The clinical definition of heart failure is a syndrome associated with symptoms, signs and objective evidence of left ventricular dysfunction (The Task Force on Heart Failure of the European Society of Cardiology 1995).

Pulmonary hypertension

Severe pulmonary hypertension caused by pulmonary vascular disease has similar clinical features to heart failure but symptoms are usually more severe. Although there are a number of causes of pulmonary vascular disease, severe pulmonary hypertension itself is rare. Many of the problems of severe heart failure also apply to pulmonary hypertension and this condition is not considered further here.

Intractable angina

In some patients with coronary artery disease angina becomes refractory to optimal medical and surgical treatment. Refractory angina is defined as persistence of angina pectoris in Canadian Cardiovascular Society class III or IV (Campeau 1976) despite maximally tolerated conventional treatment. Verification of myocardial ischaemia as the cause of pain is essential and conventional coronary artery surgery and coronary angioplasty must be deemed unsuitable on the basis of a recent coronary angiogram (Schoebel et al. 1997). Most patients have triple vessel coronary artery disease and approximately 70% will have previously undergone coronary artery surgery. Heart transplantation is rarely an option. These patients should be differentiated from patients with chest pain, coronary disease, and with no evidence of myocardial ischaemia in whom the cause of chest pain is not readily identified.

(p.31) Congenital heart disease

Some patients with certain types of congenital heart disease may develop heart failure and/or pulmonary hypertension at any time during their life. Many will have undergone cardiac surgery early in life. Since this population is generally younger than adults with acquired heart disease, the impact of symptoms on their lives is different. They are used to aggressive treatment which may include complex surgery, interventions in the cardiac catheterisation laboratory, and transplantation. The expectations of patients and their families may differ from patients with acquired heart disease. These issues are beyond the scope of this chapter.

How many patients are likely to be affected?

Heart failure

Heart failure is the only major cardiovascular disease with increasing prevalence, incidence, and mortality. It is mainly a disease of old age. The estimated prevalence (per 1000 population) is between 3.8 and 29.4 rising to 80.5 over the age of 65 years and up to 190 over the age of 75 (Cowie et al. 1997). The incidence (per 1000 population per annum) is between 2.3 and 3.3 rising to 43.5 over the age of 75 (Cowie et al. 1997). In the UK heart failure causes about 60 000 deaths per annum. With age adjusted mortality rates from cardiovascular disease declining and the size of the elderly population growing, the absolute number of individuals with compromised cardiac function is expected to increase dramatically over the next few decades (Madsen et al. 1994).

Intractable angina

There is no data on the prevalence of refractory angina (Schoebel et al. 1997) but it affects a minority of patients with coronary disease. The number of patients will increase as the long-term prognosis of coronary artery disease improves.

What problems do they have?

Heart failure

Heart failure is a progressive condition associated with symptomatic deterioration over a period of time which is unpredictable. With the exception of heart transplantation which is available to a minority of patients, modern treatments for heart failure slow but do not arrest progression of the disease.


The majority of patients have mild symptoms. The typical symptoms are breathlessness and an unpleasant sensation of fatigue. These are associated with physical restriction of activity with consequent loss of mobility, loss of well-being, anxiety, and low mood.

The cause of breathlessness and fatigue is not a direct effect of poor cardiac function: functional ability of patients with heart failure correlates poorly with objective measures of left ventricular dysfunction (Franciosa et al. 1981; Willens et al. 1987; Gorkin et al. 1993a). Both symptoms may be generated by the same pathophysiological process since the dominant symptom depends on the type of activity undertaken while haemodynamic changes (p.32) are the same (Gibbs et al. 1990). Patients with heart failure ventilate excessively for a given level of exercise (Franciosa et al. 1984) which may be only partially explained by ventilation perfusion mismatch (Sullivan et al. 1988a) since arterial oxygenation remains normal (Clark and Coats 1994). Instead the pathophysiological explanation for breathlessness and fatigue has focused on the periphery. This may involve deconditioning, wasting and metabolic changes in skeletal muscle which activate ergo- (Clark et al. 1996) and chemoreflexes (Chua et al. 1996) and influence sympathetic activation.

Quality of life in chronic heart failure is poor and may be worse than other chronic medical conditions (Stewart et al. 1989). Psychological factors may have more influence on quality of life than physical incapacity (Rideout and Montemuro 1986; Dracup et al. 1992). Psychosocial function is impaired (Wenger 1989) and often goes unrecognised (Jessup and Brozena 1988). Major depression (DSM-IV criteria) is present in a third (36.5%) and is significantly more common than in heart disease not associated with heart failure (17.0%) (Koenig 1998). It is more common in patients with severe illness, severe functional impairment and co-morbid psychiatric disorders. These patients do not make greater use of mental health resources than patients who are not depressed but they have almost double the rate of hospital admission. A cause for concern is that less than half of depressed patients receive any treatment at all for depression and they are no more likely than non-depressed patients to see a mental health specialist (Koenig 1998).

Patients are prone to episodes of acute decompensation of their heart failure causing recurrent fluid retention with symptomatic deterioration. These episodes are often unexpected and result in hospital admission which may be prolonged with an in-hospital mortality of about 8% (Rich and Freedland 1988; Rich et al. 1995; Krumholz et al. 1997). The readmission rate is 29–47% within 3 months (Rich and Freedland 1988; Vinson et al. 1990; Rich et al. 1995) and 36–44% within 6 months (Gooding and Jette 1985; Krumholz et al. 1997). This is the highest readmission rate for all hospitalised patient groups and has been increasing progressively for over a decade (McMurray et al. 1993). Symptomatic deterioration and reduced life expectancy may be caused by a lack of compliance with drug therapy. This is a common problem, especially since diuretics cause urinary incontinence and can result in constipation. Other causes of hospital readmission include dietary indiscretion with respect to salt and alcohol intake (Ghali et al. 1988; Vinson et al. 1990), failed social support and follow-up (Vinson et al. 1990), intercurrent infection, myocardial ischaemia, or pulmonary embolism. Survivors of hospital admission for acute exacerbation of heart failure have improved functional status and health perception on follow-up (Jaagosild et al. 1998).

Progressive deterioration may result in fluid retention with peripheral oedema, pleural effusions, and ascites. There is symptomatic worsening with breathlessness at rest, difficulty in breathing unless in an upright position, difficulty sleeping, anorexia, cachexia, muscle weakness, sexual dysfunction, nausea, and vomiting (Jaarsma et al. 1996). Pain has been reported to be an important symptom of patients dying from heart failure (McCarthy et al. 1996) although its nature is not yet understood. In the ‘Study to understand prognosis and preferences for outcomes and risks of treatments (SUPPORT)’, a five centre study of seriously ill hospitalised adults in the US (Lynn et al. 1997b), pain was inadequately controlled in 9% of patients dying from heart failure (Desbiens et al. 1997).

Co-morbid disease is common in heart failure (Hakim et al. 1996; Lynn et al. 1997a) increasing the total burden of disease and hospital admissions (Krumholz et al. 1997) in (p.33) these patients. Administration of drugs such as non-steroidal anti-inflammatory agents, tricyclic antidepressants, and steroids to treat co-morbid disease cause salt and water retention and may worsen heart failure.

Dying from heart failure

Poor prognosis in heart failure is predicted by poor left ventricular function, severe symptoms (Konstam et al. 1992), and metabolic markers (Lee and Packer 1986; Swedberg et al. 1990; Cohn et al. 1993). Assessment of prognosis by New York Heart Association (NYHA) functional class is the simplest approach (The Criteria Committee of the New York Heart Association 1998). The applicability and interpretation of more complex prognostic models (Campana et al. 1993; Aaronson et al. 1997) is uncertain and there is no accepted marker to determine which patients will die suddenly (Uretsky and Sheahan 1997).

Dying from chronic heart failure may be worse than cancer in terms of symptoms and distress (Hinton 1963; Hockley et al. 1988). In hospital based studies chronic heart failure has a mortality rate of 31–48% at 1 year and 76% at 3 years (Franciosa et al. 1983; Brophy et al. 1994; Bonneaux et al. 1994). The average annual mortality is about 10% (Konstam et al. 1994).

Heart failure differs fundamentally from cancer in that prognosis when close to death is more uncertain (Lynn et al. 1997a). This is mainly because of sudden death in symptomatically stable patients. In NYHA functional class II heart failure symptoms are mild and the annual mortality is 5–15%, of which 50–80% die suddenly (Gradman et al 1989; Konstam et al. 1992; Benedict et al. 1996; Franciosa et al. 1983; Kjekshus 1990). In contrast in NYHA class IV annual mortality is 30–70% with only 5–30% of deaths being sudden (The CONSENSUS Trial Study Group 1987; Califf et al. 1997).

The main cause of sudden death is probably cardiac arrhythmias. This raises the issue of cardiopulmonary resuscitation. The wishes of patients regarding resuscitation is not always considered or discussed with them. In SUPPORT, physicians did not seem to be aware of the preferences of patients for resuscitation and attempted to project their own values on these patients (Hakim et al. 1996; Tsevat et al. 1998). Although 69% of the heart failure population in SUPPORT wanted resuscitation (Hakim et al. 1996), it has previously been shown that the majority of older patients do not want resuscitation when they understand the probability of survival after the procedure (Murphy et al 1994). Training in cardiopulmonary resuscitation has been advocated for the carers of patients who wish to be resuscitated (Konstam et al. 1994) but this may have adverse psychological consequences (Dracup et al. 1986) and should be undertaken cautiously (Dracup et al. 1997).

Sudden death makes the classification of terminal illness in heart failure enigmatic if the definition of ‘terminal’ is only fulfilled after reaching a certain clinical state akin to cancer. It also means that the ability of physicians to recognise impending death in heart failure is often seriously inaccurate and they are unlikely to classify the majority of such patients as terminally ill (Lynn et al. 1996).


These patients are disabled by angina on mild exercise which may severely limit daily activities. Recurrent angina at rest results in repeated hospital admission for stabilisation of the pain.

(p.34) ‘Regional study of care for the dying’

The only UK study to investigate symptoms in terminal heart disease was the ‘Regional study of care for the dying’ (Addington-Hall and McCarthy 1995). This was a population based retrospective survey of a random sample of people dying in 20 English health districts in 1990. Sudden deaths were excluded. This study did not identify the cardiac diagnosis. People who died from heart disease mainly did so in hospital and were reported to have experienced a wide range of symptoms, which were frequently distressing and often lasted for more than six months (McCarthy et al. 1996; McCarthy et al. 1997). Poor quality of life was determined by distressing symptoms (in particular low mood, anxiety, and incontinence) and the need for assistance with self care.

At least one in seven had symptom severity comparable to those of cancer patients managed in hospices or by specialist palliative care services (McCarthy et al. 1996). Although half were thought to have known, or probably known, that they were dying, open communication with health professionals was rare (McCarthy et al. 1996). The findings suggested that these patients might benefit from the expertise of palliative care in symptom control, psychological support, and open communication, with emphasis on maintaining quality of life.

Summary of research on effectiveness of interventions/services

The primary treatment of all heart disease is appropriate evidence-based treatment to improve symptoms, prevent further deterioration, and prolong life. This includes advising and educating patients and their families about lifestyle (including diet, management of obesity, exercise, smoking, and alcohol consumption), providing rehabilitation, prescribing drug therapy, and performing surgery and interventional cardiac procedures. These aspects are well documented in the literature and are not covered here.

Heart failure

Diuretics to control fluid balance and angiotensin converting enzyme (ACE) inhibitors to improve symptoms, reduce left ventricular damage, hospital admissions and prolong life are the mainstay of therapy (The Task Force of the Working Group on Heart Failure of the European Society of Cardiology 1997). ACE inhibitors achieve this by reducing the production of angiotensin II from angiotensin I and the breakdown of bradykinins; this results in vasodilatation, reduced sodium retention, and exerts a favourable effect on myocardial and vascular remodelling. In heart failure the need to identify patients with left ventricular dysfunction and treat them with ACE inhibitors has been emphasised (Anonymous 1995; Konstam et al. 1994). In severe disease, optimisation of such therapy improves breathlessness and fatigue but may require specialist advice particularly since prescription of ACE inhibitors is often suboptimal (EUROASPIRE Study Group 1997). Randomised controlled trials have also provided evidence for the advantageous use of other drugs such as beta blockers (Australia/New Zealand Heart Failure Research Collaborative Group 1997) and digoxin (The Digitalis Investigation Group 1997).

Randomised trials to investigate the effects of antidepressants have not been performed. This is because tricyclic antidepressants and related drugs are cardiotoxic and may (p.35) precipitate sudden death, although selective serotonin re-uptake inhibitors have fewer cardiotoxic effects. Acute dosing with dihydrocodeine improves breathlessness by suppressing chemosensitivity with associated reduction of exercise ventilation (Chua et al. 1997). This effect has not been investigated with chronic opioid administration.

Exercise training improves exercise capacity and symptoms (Sullivan et al. 1988b; Coats et al. 1990; Coats et al. 1992). This effect is associated with improvements in blood flow to skeletal muscle (Sullivan et al. 1988b) and muscle metabolism (Adamopolous et al. 1991). A randomised trial of exercise training is planned in Europe.

Patients with heart failure frequently express a preference to be managed at home but lack the confidence to be self-sufficient in their own care (Vinson et al. 1990). In one study the problem of compliance with therapy was improved by patient directed group meetings and reduced readmissions (Rosenberg 1971), but another showed that while compliance improved there was no significant effect on quality of life (Goodyer et al. 1995). Social support may have a greater role in influencing mortality than functional status (Frasure and Prince 1985; Willund et al. 1992; Gorkin et al 1993b).

Although the use of nurse specialists has been advocated to improve outcomes (Cintron et al. 1983; Frasure and Prince 1985; Dracup et al 1994; Konstam etal. 1994), evidence of benefit from this is limited. A nurse directed intervention for hospital in-patients failed to improve communication, issues surrounding resuscitation, days spent on an intensive care unit, or control of pain (The SUPPORT Principal Investigators 1995). This finding was not peculiar to heart failure and applied to other chronic illnesses.

In the community, one randomised study has shown that nurse directed multidisciplinary care was more effective and reduced hospital admissions compared to conventional care (Rich et al. 1995). This multifaceted approach included education, dietary instruction, review of drug therapy, and intensive follow-up at home and was not designed to identify which elements were most important.

Such success has not been universal. A randomised trial of a structured care programme based on a nurse monitored out-patient clinic to improve symptom management failed to reduce hospital readmissions and if anything tended to increase the length of hospital stay (Ekman et al. 1998). Twenty-nine per cent of patients in the intervention group were unable to participate despite being judged suitable by a doctor and themselves. This poor participation rate was associated with the need for assistance at home. In another randomised study of severely ill patients suffering mainly from heart failure, hospital admissions actually increased during intensive care in the community by a nurse and a primary care physician (Weinberger et al. 1996). Although patient satisfaction improved in the intensive care group, quality of life scores did not differ from the control group. Since patients with heart failure may experience worsening symptoms for a relatively long time prior to hospitalisation (Friedman 1997) it has been proposed that an intensive care programme may lead to the detection of previously unrecognised medical problems (Ekman et al. 1998). Among a cohort of high risk patients with heart failure, home based intervention was associated with reduced frequency of unplanned readmissions plus out-of-hospital deaths within 6 months of discharge from hospital (Stewart et al. 1998). Home based intervention comprised a single home visit (by a nurse and pharmacist) to optimise medication management, identify early clinical deterioration, and intensify medical follow-up and caregiver vigilance as appropriate.

The disparity of the results in these studies may be caused by differences in the severity of heart failure, differences in the intervention and selection of patients by high risk of (p.36) readmission, or differences in social circumstances. This limited evidence favours a home based approach to continuing care in selected patients.

Intractable angina

The pathophysiology of this condition is not well understood and therapeutic options are limited. In assessing therapy it must be appreciated that drug therapy elicits a placebo effect on symptoms of almost two-fifths (Benson and McCallie-DP 1979). Surgery may also derive considerable placebo benefit (Dimond et al. 1960; Effler et al. 1965). Over-treatment with conventional anti-anginal drugs may cause iatrogenic symptoms including dizziness, tiredness, and subjective discomfort (Tolins et al. 1984). A number of new therapies are being developed and these include transmyocardial revascularisation, long-term intermittent urokinase therapy, and transcutaneous and spinal electrical nerve stimulation. An analgesic approach is considered contraindicated because it may mask signs of life-threatening myocardial ischaemia (Schoebel et al. 1997). This is controversial, and some of these patients are managed with long-term opiates or methadone.

In addition to an analgesic effect, nerve stimulation may have an anti-ischaemic action (De Jongste et al. 1994) possibly by reducing myocardial oxygen demand by decreasing sympathetic activity (Norrsell et al. 1997) and improving myocardial perfusion to ischaemic zones (Hautvast et al. 1996). It does not mask pain in myocardial ischaemia (Mannheimer et al. 1993) or infarction (Andersen et al. 1994). The treatment has been reported to be effective (Eliasson et al. 1993; Sanderson et al. 1994; Bagger et al. 1998) but long-term treatment has a beneficial effect in only 57% of carefully selected patients (Bagger et al. 1998).

Priorities for further research

Heart failure

Research into, and specialist services for, the care of patients with end stage heart disease has been neglected (Higginson 1993). A suggested approach to heart failure is to determine the following.

  1. 1 The needs of patients: there is a lack of knowledge about the impact of heart failure on patients' quality of life, the adequacy of symptom control, or the communication needs of these patients. Differences between men and women as well as ethnic minorities should be explored. The need for improved provision of care for these patients with increased emphasis on quality rather than quantity of life has been recognised (Gibbs et al. 1998). Services for these patients cannot be developed in the absence of good information on their needs.

  2. 2 Which interventions designed to meet the needs of these patients as part of a palliative approach are appropriate, acceptable, and cost effective. It cannot be assumed that a multidisciplinary team as used in cancer will be the most appropriate and effective approach in heart disease. Interventions in heart failure include educating patients and their carers, improving communication, providing social support, providing care by telephone, management by nurse specialists, counselling, and psychological support as well as many others. In view of the lack of a clearly defined terminal phase of the illness attention needs to be paid to interventions to improve care for all patients with severe heart failure, rather than for those judged to be terminally ill.

  3. (p.37) 3 Research into which models of care provide optimal medical out-patient care: this includes the role of and level of care provided by general practitioners, general physicians, geriatricians, accident and emergency physicians, palliative care physicians, and cardiologists. A prerequisite is that the doctor should have good knowledge of heart failure. A shift from generalist to specialist care would overwhelm current resources. Consideration should be given to the role of specialist heart failure clinics.

  4. 4 Where patients are best managed at different stages of the illness warrants investigation: this includes management at home, in hospital in a secondary or tertiary centre, in a hospice, a nursing home and community care.

  5. 5 How different long term models of care influence outcomes.

Intractable angina

New approaches to myocardial ischaemia will continue to evolve. The influence of new therapies needs to be evaluated in randomised trials to assess clinical efficacy and mortality. Registry data should be collected if randomisation is not ethically or practically possible. Co-morbid psychiatric illness should be assessed. The needs of these patients with particular regard to pain relief should be assessed.

Implications for clinical management

Current evidence suggests that patients dying from heart disease have poor symptom control and un-met needs. Uncertain prognosis means that while treating heart failure to improve not just symptoms but also prognosis, the possibility of dying must be acknowledged and support provided for patients and their families about the issues surrounding death (Lynn et al. 1997a). For the majority of patients there will be no clearly defined terminal phase of life. Planning for death early in the course of the illness might allow anticipation and reduction of futile care.

Differences in the natural history and treatment of heart disease and cancer suggest that a palliative approach to the care of cardiac patients may necessarily differ from established palliative care in cancer. The management of heart failure will require reappraisal when it becomes clear what needs these patients have, where they are best managed and which interventions are effective in improving satisfaction and quality of life. This will have important implications for the use of health care resources.


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