By continuing to use the site you agree to our Privacy & Cookies policy

In Depth

Palliative care 1: principles of palliative care nursing and end-of-life care

This article describes the definitions, goals and principles of palliative care nursing, and the diversity and challenges of providing this care

Abstract

Becker, R. (2009) Palliative care 1: principles of palliative care nursing and end-of-life care. Nursing Times; 105: 13, early online publication.

The first in this three-part series examines the diversity and challenges inherent in nurses’ contribution to palliative care. The art and the science of caring for those who are dying and their families has long been recognised as an immensely demanding and rewarding part of health and social care. For nurses, it is central to the values and principles that underpin clinical practice.

Keywords: Palliative care, Holistic, Caring

 

Author

Robert Becker, MSc, RMN, DipN, FETC, CertEd (FE), RGN, is Macmillan senior lecturer in palliative care, Faculty of Health, Staffordshire University and Severn Hospice, Shropshire.

 

Introduction

The science of palliative care has undergone rapid developments, most notably with advances in pharmacological interventions to help control chronic pain and distressing symptoms. This vital and essential aspect of optimising patients’ quality of life has undoubtedly contributed to the widening acceptance of palliative care as a recognised nursing speciality in the UK and beyond.

The art of caring, however, has received significantly less attention, perhaps because of its more abstract nature. It is much more difficult to provide demonstrable clinical evidence of the contribution of interpersonal interventions when the outcome is death itself. Yet there is ample evidence that a caring approach that embraces psychological, psychosocial and spiritual support is highly effective and is valued by patients and families (Beaver et al, 2000).

It can be argued that nursing and palliative care are natural partners in clinical practice and that the knowledge and skills required in this area are applicable to all nurses. People die in many environments and all have a right to supportive and palliative care, regardless of diagnosis or circumstances (NICE, 2004).

The values and beliefs that underpin high-quality palliative care are integral to good nursing. Nurses are in a unique situation – as the only real 24-hour carers in the healthcare system – to incorporate and develop the principles and practice of the palliative approach into their daily work where it is appropriate to do so.

The challenge to nurses involved in end-of-life care is how to combine the art and the science into a cohesive approach that reflects individuality, choice, dignity and compassion in whatever environment care takes place.

 

Defining nursing

The activity of nursing is a complex mix of many hands-on skills and personal qualities bound together into an eclectic discipline that is inherently difficult to define. Florence Nightingale herself stated: ‘I use the word nursing for want of a better.’ She went on to say: ‘The very elements of nursing are all but unknown’ (Nightingale, 1860). Nursing is concerned with the human condition in times of health crisis and its very essence therefore is bound up in human nature.

The notion of professional caring, the building of therapeutic relationships and the practice of nursing as a regulated profession with definable standards has only been around since the beginning of the 20th century. In this time, there have been many definitions of nursing published.

In the context of palliative care, perhaps the most succinct and relevant one is that written by Virginia Henderson (1997): ‘Nursing is primarily assisting the individual in the performance of those activities contributing to health and its recovery, or to a peaceful death.’

The statement suggests partnership, helping and dignity – all concepts that are central to the palliative approach to nursing.

 

Defining palliative

The word ‘palliative’ has its origins in the Latin word ‘pallium’ meaning to cloak or cover. In the context of how cancer was perceived and poorly diagnosed from the middle ages until perhaps the latter half of the 20th century, it is an appropriate description. Even today, there are many cancers that grow unseen and without symptoms for a considerable time before the person seeks help. 

A more contemporary and simple definition is ‘to mitigate the sufferings of the patient, not to effect a cure(Macpherson, 2002).

Take the example of the common cold, for which there is no cure. The experience is uncomfortable, but thankfully not usually life-threatening. The only relief obtainable is direct palliation of the most prominent symptoms, in the recognition that cure is not an option but with the intention to improve quality of daily life. As an experience, it is one to which we can all relate and, in the context of end-of-life care, the meaning is abundantly clear.

 

World Health Organization

The World Health Organization definition (Box 1) dates back to 1989 and was the first to define specialist palliative care. It was updated in 2002 and has been used by healthcare professionals and politicians to argue for the development of services and to guide practice in over 100 countries. It remains today the most accepted and used definition (WHO, 2009).

Box 1. WHO definition of palliative care

Palliative care:

  • Provides relief from pain and other distressing symptoms;
  • Affirms life and regards dying as a normal process;
  • Intends to neither hasten nor postpone death;
  • Integrates the psychological and spiritual aspects of patient care;
  • Offers a support system to help patients live as actively as possible until death;
  • Offers a support system to help the family cope during the patient’s illness and in their own bereavement;
  • Uses a team approach to address the needs of patients and their families, including bereavement counselling, if indicated;
  • Will enhance quality of life, and may also positively influence the course of illness;
  • Is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes investigations needed to better understand and manage distressing clinical complications.

Source: WHO (2009)

It states: ‘Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.’

The emphasis is on quality of life, not quantity, and it affirms that dying is a normal life process, not a medical disease process. It forces us to think holistically and move away from a model focused on medical disease.  

The clear message of support for both patient and family, combined with a multidisciplinary team approach, is consistent with good nursing practice and can help us to conceptualise what nurses should be attempting to achieve when they have contact with dying people.

UK standards

The National Council for Palliative Care, which is an umbrella organisation for setting standards in specialist palliative care in the UK, published its current definition in 2002 (Box 2).

 

Box 2. NCPC definition of palliative care

Palliative care:

  • Affirms life and regards dying as a normal process;
  • Provides relief from pain and other symptoms;
  • Integrates the psychological and spiritual aspects of patient care;
  • Offers a support system to help patients live as actively as possible until death;
  • Offers a support system to help the family cope during the patient’s illness and in their own environment.

Source: National Council for Palliative Care (2002)

 

The main part of the definition is simply a shortened and adapted version of the one discussed above (WHO, 2009). What is significantly different, however, is the emphasis on the phrase ‘supportive care’, a term that is widely used today to describe both general and specialist services that may be required to support people at the end of life. It is based on an assumption that people have needs for supportive care from the time their possible diagnosis is first mentioned.

The influential strategy document on the development of palliative care services produced by NICE (2004) uses this definition widely.

It states: ‘Palliative care is the active holistic care of patients with advanced, progressive illness. Management of pain and other symptoms and provision of psychological, social and spiritual support is paramount. The goal of palliative care is achievement of the best quality of life for patients and their families. Many aspects of palliative care are also applicable earlier in the course of the illness in conjunction with other treatments.

‘Supportive care is that which helps the patient and their family to cope with cancer and treatment of it – from pre-diagnosis, through the process of diagnosis and treatment, to cure, continuing illness or death and into bereavement. It helps the patient to maximise the benefits of treatment and to live as well as possible with the effects of the disease. It is given equal priority alongside diagnosis and treatment.’

Complex concepts

The concept of family is central to the wording of both these definitions. Many research studies have examined the complexities of family structure and dynamics and have rightly concluded that the cultural and societal influences, value systems and beliefs within a family will determine how they cope with major life crises such as death and dying (Andershed, 1999).

What has become clear is that the family is less well equipped in modern western society to deal with the emotional and social demands that caring for a dying relative brings than ever before (Johnston, 2004). 

Palliative care services and professionals, therefore, need to be flexible and non-judgemental in their definition of ‘the family’ and to be responsive to the changing norms of communities if they are to provide the support necessary to both the patient and the people important to them.

Palliative care nursing is very much about helping people to live until they die, not about helping them to die prematurely. This is not merely semantics, but a vital and integral part of palliative philosophy that is enshrined within the very simple statement ‘neither to hasten nor postpone death’ (WHO, 2009).

Of all the components of this definition, this is the one that is perhaps in danger of being undermined the most. Both the Netherlands and Belgium have passed legislation in recent years to legalise medical assistance to die for terminally ill people who request it. Switzerland also has legislation to enable people to request medical help to commit suicide and several states in the US have similar laws (Gordijn et al, 2002).

There is no doubt that the intent behind such laws is indeed one of compassion for people who find themselves in a desperate situation. The euthanasia debate in its many complex forms will remain high on the healthcare agenda for many years to come. It is a sensitive issue and demands informed debate from all healthcare professions.

The moral prerogative in bedside care, however, usually falls on the nursing profession. It is useful to remember that, with the correct use of the wide range of pharmacological interventions to control pain and symptoms, coupled with support for families and patients, the statement ‘help me to die’ that is sometimes heard in this context, when explored carefully, usually means ‘help me’. Nurses who are aware of and embrace the palliative approach to care are able to do exactly that.

The End-of-Life Care Strategy

In the past decade, there has been an increasing focus on patient choice and self-determination within health and social care settings. In the UK, many initiatives (NICE, 2004; Department of Health, 2003; Commission for Health Improvement and Audit Commission, 2001) have highlighted specifically that patient choice over place of death should be considered a priority.

The End-of-Life Care Programme was set up in England in 2005 (NHS Confederation, 2005) to promote three initiatives independently developed to facilitate good practice for dying patients: the Gold Standards Framework (Thomas, 2003); the Liverpool Care Pathway (Ellershaw et al, 2003); and the Preferred Place of Care document (Storey et al, 2003). Now, some three years after its implementation, the government’s End of Life Care strategy (Department of Health, 2008) offers an ongoing evaluation of these three initiatives and their impact on direct care.

Nurses in any environment where people die are beginning to encounter these initiatives, which centre around planning and prioritising care for people in the weeks and months leading up to their deaths.

The Gold Standards Framework is designed to be used by district nurses and GPs. The Liverpool Care Pathway is designed to be used by all disciplines within acute care, long-stay settings and nursing home environments, where it helps prioritise care in the last week or so of life. Preferred Place of Care, the only nurse-led initiative, is designed to be used with patients to help them plan and meet their wishes some months before their death.

Conclusion

Embracing the palliative care approach successfully in nursing practice is not dependent on complex medical interventions, specialist environments or even the instant availability of a range of drugs and disciplines. The propensity to make specialist nursing the preserve of the highly trained few does not apply here. The skills, attitudes and values described in this article apply to nurses on any part of the register, working in any environment where they encounter the dying.

Some of the most inspirational palliative care I have witnessed has been in situations where the building was riddled with damp, the floors infested with cockroaches and the modern opiates we take for granted to help manage chronic pain simply not available. The suffering of the patient and family has been immense, but the skills of the nurses caring for them have been a privilege to see. It is often that precious gift of ‘being’ and not just ‘doing’ alongside the patient which makes the difference (Thompson et al, 2006)

Palliative care nursing involves valuing all the characteristics and past experience of the person. It demands an attitude and approach that goes beyond the diagnosis and immediate medical problem. Achieving this requires a level of personal human contact with the dying person that goes beyond the tasks and procedures that can so often dominate everyday work. It is both a science and an art and emphasises normality and quality of life.

It is shaped by an individual’s search for a sense of meaning and their desire for honesty and control over their life, and a need to maintain personal dignity as they see it, for the life they have left.

It is a combination of knowledge, skills and compassion in equal measure, which is sensitive, hopeful, meaningful and dynamic. Above all, it is a way of thinking and an attitude of mind that should influence a nurse’s behaviour whenever they work with a dying person in whatever setting (Becker et al, 2004).

 

 

 

Have your say

You must sign in to make a comment.

Related Jobs

Sign in to see the latest jobs relevant to you!

newsletterpromo