Developing Holistic Care for Long-term Conditions

Carl Margereson, Steve Trenoweth

• Publisher: Routledge
• Year: 2009
• Print ISBN: 9780415460804
• eBook ISBN: 9781135270353
• Topic: Medicine
• Subtopic: Health Care Delivery

Developing Holistic Care for Long-term Conditions focuses on how to help people with long-term health conditions cope more effectively. It brings together physical and mental health, offering a holistic approach for students and practitioners in a variety of care settings.

Comprising four sections, this text introduces the policy and background to caring for people with chronic illness as well as the psychosocial impact of long-term conditions. Essential skills for practice are explored including holistic assessment, symptom control and the promotion of effective partnership between client and carer in supporting coping, recovery and end of life care. There is an emphasis on maximising individual health potential and resilience with the role of nutrition, exercise, complementary therapy and spirituality considered. The focus is on client centred care which addresses the whole person, mind and body. The extensive final section presents examples of key health issues where UK national guidelines have been published including:

Long-term neurological conditions

Diabetes

Mental health

Cancer

Coronary heart disease

Older people

This evidence-based book takes note of the relevant National Service Frameworks and offers an informative and pragmatic guide for all those learning about caring for the chronically ill, as well as providing a useful reference work for qualified nurses and allied health professionals.

Part I
Overview of holistic care

1 Epidemiology and aetiology of long-term conditions

CARL MARGERESON AND STEVE TRENOWETH

2 Trajectory and impact of long-term conditions

CARL MARGERESON

3 Going forward with long-term conditions: towards a true health system

TIM ANSTISS

4 Legal and ethical issues

JANET HOLT

Introduction

Part I introduces a life course approach and psychosocial models of health to explain not only the aetiology of disorders but the many factors possibly contributing to recovery, chronic illness adjustment and death. Changing demographics and improved life expectancy with increasing numbers of older people often with comorbid physical and mental health problems are explored. These developments are considered within the context of ongoing societal changes where lifestyle choices will increasingly challenge our ideas of community and caring.

For those living with an ongoing physical or mental health problem or indeed both, adjustment is necessary. For many people such adjustment is not always easy. Optimising symptom control alone will not increase the effectiveness of coping. In Chapter 2, Carl Margereson shows that we ignore people’s thoughts, attitudes, feelings and behaviours regarding their health at our peril not least owing to the negative impact that psychological and social issues may have on the trajectory of the chronic illness. The principles of psychoneuroimmunology are introduced to demonstrate to readers the link between chronic stress and ill-health while focusing in particular on uncertainty, loss, changing identities, self-efficacy and disability.

In Chapter 3, policy initiatives driving the health and social care service changes regarding long-term conditions are explored along with initiatives designed to develop a more integrated and systematic approach to chronic illness. Models of care delivery drawing on international experiences are considered including Wagner’s Chronic Illness Model and Kaiser Permanente. Policy, however, does not take shape in a vacuum and cannot be carried out by health and social care agencies alone, and questions about user movements and increased expectations and caring in the future are also raised.

The care and treatment of people with chronic ill-health raises a number of ethical dilemmas. Chapter 4 explores such issues and considers the notion of autonomy and legal and ethical frameworks, and the resultant difficulties which may be encountered not least in the area of consent and choice. Janet Holt reflects on the withdrawal of treatment as well as overt/covert rationing of care in chronic illness and the crucial role of shared decision-making in all these areas. Advanced directives and power of attorney are also considered.

1 Epidemiology and aetiology of
long-term conditions

Carl Margereson and Steve Trenoweth

Introduction

The terms ‘long-term condition’, ‘long-standing disorder’, ‘chronic illness’ and ‘chronic disease’ all refer to those health problems that are prolonged, do not resolve spontaneously, and are rarely completely cured (Dowrick et al. 2005). According to the Department of Health, in the United Kingdom (with a population of 61 million), approximately 17.5 million people have a long-term condition. Chronic illness is a significant health issue not least owing to the rising numbers of people with long-term health problems and the spiralling financial impact. Worldwide, the prevalence of all the leading chronic diseases is increasing (World Health Organisation 2005) and although this book focuses mainly on the UK experience it is important to remember that numbers are greater in developing countries and are projected to rise substantially over the next two decades and beyond. Unfortunately, it appears that poorer countries are inheriting the problems of more affluent nations including diets rich in calories and fats, sedentary behaviour, increasing exposure to urban stresses, and the harmful consequences of tobacco, alcohol, drug use, accidents, suicide and violence (Holroyd and Creer 1986).

Life expectancy

Life expectancy in the UK has been increasing steadily and currently stands at 77.2 years for men and 81.5 years for women (ONS 2008) – the highest since records began. A number of factors have led to increased life expectancy including reduced infant mortality, obvious advances in medical knowledge, treatment, interventions and the development of skilled healthcare practitioners. Improved public health in the UK has also made a major contribution to life expectancy and there have, of course, been improvements in housing, sanitation and nutrition, with a decline in absolute poverty.

There is a price to be paid, however, for such longevity as it may bring with it a potential for an increased prevalence of age-related chronic disease. With increased longevity the primary causes of death and disability are conditions such as degenerative health problems (e.g. dementia), cardiovascular disease (heart disease and stroke), cancer and chronic respiratory disease, all affecting the older person more than the young. In 2005 the General Household Survey pronounced cardiovascular disease as the most commonly reported long-standing illness after musculoskeletal conditions (ONS 2005). However, while there is an increased likelihood and prevalence of such health problems, it must not be assumed that older people are all experiencing major chronic health problems or activity limitations (Kronenfeld 2006).

Co-morbidity

As medicine developed as a profession it was believed that the ‘mind’ had very little influence over the ‘body’, and over the years this dominant view has had a significant effect on healthcare delivery. One consequence is that there is often a tendency to consider physical health and mental health quite separately as a clear line of demarcation tends to exist between medical and psychiatric health services. Yet people with severe mental ill-health can also experience ‘co-morbid’ physical health problems, and having a severe and ongoing physical illness can significantly increase the likelihood of developing psychiatric problems (Cooke et al. 2007). Clients with long-term conditions may have very complex needs, but health services are often one-dimensional in their outlook (that is, they concentrate on either the medical or psychiatric but not both).

The reductive simplification of clients’ problems can mean that significant aspects of their whole person (their psychological, social, emotional, biological or spiritual worlds) may be overlooked and, as a consequence, the holistic healthcare needs of clients may not be met effectively. It has been argued that such an artificial division between mental and physical illness is not only archaic and deeply misleading but incompatible with contemporary understanding of disease (Kendall 2001). The following section will help to show how important it is to consider both the mental health and physical health of clients with long-term conditions.

Prevalence of co-morbid mental and physical ill-health

About one in six adults aged 16 to 74 have mental health problems such as depression, anxiety or phobias while five in 1000 people were assessed in a single year as probably having schizophrenia and bipolar disorders (ONS 2001). Serious mental illness affects up to 3 per cent of the population in the United Kingdom and it is estimated that approximately 450 million people worldwide have a mental health problem (World Health Organisation 2001). However, there are many more people with long-term chronic and disabling conditions who experience mental distress which is not diagnosed, recognised or treated.

For example, the presentation of depression in the UK population has increased dramatically over recent decades and this has been accompanied by a decrease in the age of onset, with more cases being reported in children, adolescents and young adults (Mental Health Foundation 2006). Although the World Health Organisation (WHO) has highlighted depression as the second most common and economically costly long-term condition that will affect non-medically ill people globally over the next decades, depression is likely to be unrecognised and under-treated, particularly in primary care (Ballenger et al. 2001).

With the focus often on physical decline and physical health issues in the older person, together with an assumption that cognitive decline is inevitable, there is often a lack of awareness about the mental health of older people (DoH/CSIP 2005). This may result in mental health problems not being identified or referred to specialist mental health practitioners. However, 40 per cent of older people attending a GP and 50 per cent who are general hospital in-patients have a co-morbid mental health problem (most commonly depression, dementia or acute confusion). In care homes it is estimated that 60 to 70 per cent of residents have some form of dementia and 40 per cent have depression, and in the general community depression affects 15 per cent of older people with 5 per cent of those over 65 years affected by dementia (Department of Health/CSIP 2005). Out of 100,000 older people there will be 60 with ongoing mental illness such as chronic schizophrenia or relapsing mood disorder. Older women have twice the levels of depression as men and higher levels of anxiety and, sadly, women over the age of 55 account for over one-third of female suicides (Samaritans 2008).

Unfortunately, when compared with the general population, people with serious diagnosed mental health problems and learning disabilities have increased rates of physical illness and their overall physical health is poor (Harris and Barraclough 1998; Phelan et al. 2001; Robson et al. 2008). The Disability Rights Commission (DRC 2006) has recently drawn attention to the physical health inequalities experienced by people with mental health problems and those with learning disabilities. Many physical disorders including heart disease, diabetes and chronic respiratory disease are more likely to occur at a younger age in people with serious mental health problems, and who once diagnosed are more likely to die within five years compared with the general population (Harris and Barraclough 1998; DRC 2006). Sudden death caused by cardiac disease is three times as likely in patients with schizophrenia compared to the general population (Casey et al. 2004; Jindal et al. 2005) and there is an increased prevalence of chronic obstructive pulmonary disease (chronic bronchitis and emphysema) in people with serious mental disorders (Himelhoch et al. 2004). It is unacceptable that, on average, people with schizophrenia can expect to live ten years less than someone without a mental health problem (Mentality/NIMHE 2004) and, while it is true that suicide and accidental death contributes to this, mortality due to poor physical health is common (Jones et al. 2004)

When we consider people with physical health problems, a similar picture emerges in terms of co-morbidity, with mood disturbance and emotional difficulties common. For many individuals, mood changes are mild and do not affect coping ability. For others, severe mood disturbance may result in significant adjustment difficulties with increased disability and psychiatric co-morbidity. The Royal College of Physicians and Royal College of Psychiatrists reported in 1995 that at least 25 per cent of medical hospital patients have problems with adjustment and a further 15 to 18 per cent have anxiety and depression (RCP 1995). They also concluded that health providers in general medical care settings were often unable to carry out basic psychological assessments to detect problem areas.

There has been a great deal of research which has identified circumstances where physical illness is complicated by mental health issues. Depressed patients, for example, are twice as likely as non-depressed patients to have a major cardiac event within the first 12 months (Carney et al. 1988), and they are significantly more likely to die in the years following the diagnosis (Barefoot et al. 1996). Heart failure affects approximately 707,000 people over the age of 45 in the UK (Allender et al. 2008) and is the most frequent cause of hospitalisation. Major depression is present in 17 to 37 per cent of patients with heart failure and minor depression in 16 to 22 per cent (Freedland et al. 2003). Depression in patients with heart failure increases further their risk in terms of ongoing physical health and death (Jiang et al. 2001). In those with end-stage renal disease depression is identified as the most common psychiatric illness but its prevalence varies widely in different studies and populations (Kimmel 2001).

Chronic respiratory illness is common in the UK and when all these disorders are considered together, deaths from respiratory problems are greater than those due to heart disease. There is an increased prevalence ...

Table of contents

• Cover Page
• Title Page
• Copyright Page
• Dedication
• List of Illustrations
• Notes on Contributors
• Introduction
• Part I: Overview of Holistic Care
• Part II: Developing Holistic Care
• Part III: Caring for the Mind, Body and Spirit
• Part IV: Specific Conditions