The World Health Organisation (WHO) defines palliative care as an approach that improves the quality of life of patients and their families facing the problems 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. Palliative care:

– provides relief from pain and other distressing symptoms

– affirms life and regards dying as a normal process

– intends neither to 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 (WHO 2003).

This chapter now considers each of the eight parts of the WHO definition of palliative care and gives you a short activity for each to help you think about nursing actions that can ensure the definition is achieved in any practice area.

Provides relief from pain and other distressing symptoms

Often the focus of care can be on relieving a physical pain without considering wider issues for the patient. Dame Cicely Saunders, the doctor who opened St Christopher’s Hospice in London in 1967, introduced the concept of ‘total pain’ (Saunders 1964) which encompassed physical, emotional, social, spiritual and psychological aspects of life. The idea of total pain became central to the multidisplinary team (MDT) approach of the modern hospice movement during the 1970s and 1980s. This idea of total pain has grown to include the consideration of the ‘inner self’ which is known only to the patient. This inner self is the person’s own thoughts about what is happening in their lives and can have a positive or negative effect on their perception and experiences of pain.

We return to the concept of physical, emotional, social and psychological aspects of caring for a patient in Chapter 15 on managing symptoms.

Affirms life and regards dying as a normal process

Activity

Consider what you understand pain to be. Write down all the words associated with pain that you can think of. Now reflect on a time you might have been in pain. What made it better? What made it worse? How many of the words in your list have you experienced?

Consider your thoughts on distress. List the times you have seen a person in distress. What might have been causing this distress? What made it better? What made it worse?

NMC Domain 2: 2.3; 2.4

How can dying be ‘normal’ when a person is young, in a lot of pain or just retired and looking forward to the years ahead? This is one of the main challenges facing those who care for a patient in the palliative care phase. What we must consider is that from the time a patient is recognised as being in the palliative stages of their illness, it is important to support them to get a degree of normality. Thinking of ways to keep things normal is a really helpful way to support a patient and their family and can be a good way of building relationships and helping manage symptoms.

Activity

Consider what a ‘normal day’ is for you. List all the activities you might do on a normal day. Now pick out three things in your normal day that are absolutely vital for you. Now imagine you can’t do these three things – how would you feel?

Now consider your practice placement and list the things that might impact on a patient’s ‘normal day’: for example, visiting hours, times meals are served, number of visitors at the bed side, availability of a newspaper or access to the Internet.

NMC Domain 1: 1.1; 1.2

NMC Domain 3: 3.3; 3.4

NMC Domain 4: 4.3

Case history 5.1

A patient is admitted to your ward and, on the day of admission, he tells you that part of his normal daily routine is to walk his collie dog. He appears really worried and is very tearful. He tells you ‘Since my wife died, she is everything to me and keeps me going’.

List the things you could do to support your patient.

(See page 50 for answers.)

Intends neither to hasten nor postpone death

As a member of the NMC register, it is essential to adhere to the law of the country you are working in (NMC 2008). In providing palliative care, it is important to balance managing distressing symptoms and ensuring our actions do not hasten the end of life. The terms ‘euthanasia’ and ‘assisted dying’ are often used in association with managing distressing symptoms and there is a lot of confusion about what actions we undertake and how these actions are not ‘ending life’ instead of managing symptoms and comfort.

We now consider the idea of ‘double effect’. It is often thought that giving a patient morphine will affect breathing. Morphine is prescribed primarily as an analgesic, and in small quantities it can be used to help with breathlessness. A possible side effect of morphine is its sedative effect and sometimes this occurs as a consequence of managing pain or breathlessness. So there is a potential ‘double effect’ of giving the morphine. However, it is important to remember the morphine has been prescribed primarily to relive the pain and not decrease the breathing.

One of the challenges for healthcare professionals is to keep our personal views private while maintaining our professional practice. Understanding law and professional guidelines can help us do this.

Activity

In February 2010, the Director of Public Prosecution, Keir Starmer, announced 16 points of public interest for consideration to prosecute and 6 points to consider against prosecution. Familiarise yourself with these points by visiting the following Website:

http://www.cps.gov.uk/news/press_releases/109_10/ (accessed July 2011).

Now consider how you might respond to a patient who says the following:

‘Can you help me to end all this?’

‘If I was a dog, you would put me to sleep.’

‘I am a burden to my family so I just want to die.’

Spending some time to consider how you might respond to these statements now can be a useful way to reduce feelings of stress when speaking with a patient or family about very sensitive issues. Write down some phrases that might be appropriate to respond to these comments.

(See page 50 for answers.)

NMC Domain 1: 1.1; 1.2

Integrates the psychological and spiritual aspects of patient care

The word ‘spiritual’ comes from the Latin word ‘spiritus’ meaning breath, air, breathing. This idea of giving life underpins the definitions we have of spirituality and goes far beyond the following of a religion. Section 2 explores in detail different aspects of religious and cultural beliefs in order to help you understand how to meet patients’ (and families’) spiritual needs before, during and after death.

Understanding spirituality can help to care for a patient who might be experiencing distress. Psychological and spiritual care can be extended to a patient’s family, both before and after death. A new concept in recognising and addressing spiritual needs is the work on ‘Being’ (Sheard 2007):

This work focuses on increasing our ability to ‘be’ rather than to ‘do’. It originated from working with people with a dementia diagnosis, however it has some very important concepts which can be applied to any part of nursing care. The key ingredients of this approach are:

• being person centred

• being feeling based

• being passionate,

We are now beginning to see the links between physical wellbeing and psychological and spiritual distress. We refer to this as ‘holistic care’ and it is a fundamental part of the definition and practice of palliative care. Being able to understand the holistic needs of a person helps to plan care and reduce distress and is a fundamental aspect of providing dignified and compassionate care (McSherry & Ross 2010). We explore psychological distress in more detail in Chapter 15 on managing symptoms.

Offers a support system to help patients live as actively as possible until death

Here we think about a variety of supportive care measures to help a person be as active as possible. Ways of doing this include understanding how to manage symptoms and giving clear and concise information about what is happening and what is planned.

Activity

Think about all the ways you can offer support. Make a list of the actions that you can do to support a patient to be active in their dying. Think of ‘active’ as something that can be physical, emotional, spiritual, artistic and practical.

NMC Domain 1: 1.1; 1.2; 1.4

NMC Domain 2: 2.1; 2.5

NMC Domain 3: 3.3; 3.4

Offers a support system to help the family cope during the patient’s illness and in their own bereavement

When caring for a patient on a busy hospital ward or in their own home, it is important that their friends and relatives are given as much information and support as is appropriate. Information gathered in conversation from a patient or family at admission or from previous notes is a starting point. We now consider others ways to support the family.

Activity

If you want some more practice, complete a genogram for ‘Mary’. The completed genogram for Mary can be found at the end of this chapter on page 50.

Mary is a 50-year-old patient.

Her mother is called Eva and is 80 years old.

Her father died 10 years ago from stomach cancer.

Her sister Eileen is 58 and has one daughter who is married with a 10-year-old son. She also has a son who is 30 years old.

Mary’s other sister is called Joyce and she is 53 years old. She is divorced with no children.

Mary married Peter, however they divorced 15 years ago. Peter died 13 years ago and both his parents are still alive.

Mary and Peter had three children:

– James is 28 years old and he is married with twin boys aged 4 years. They live locally in Nottingham.

– John is 25 years old and he lives in Canada with his girlfriend.

– Lucy is 20 and currently studying at Leeds University.

After her divorce to Peter, Mary married John who is 54 years old and they have twin daughters – Ellie and Bethan – who are 10, and a son – Matthew – who is 6 years old.

John’s mother died 3 years ago from cancer of the bowel. John’s father died of a heart attack when he was 11 years old.

This is really important when things suddenly change and you need to offer extra support to family members. Knowing who people are and who is missing is a vital part of managing a distressing situation.

Uses a team approach to address the needs of patients and their families, including bereavement counselling if indicated

Palliative care is not just about looking after a dying person but also the family at the time of death and into bereavement. Often in busy ward areas, the last time a nurse will have contact with a bereaved family will be when they leave the ward immediately after the death. This can leave professionals with a mixture of emotions. For some, not being on duty at the time of death can be upsetting. We continue to consider bereavement support in Chapter 16.

Will enhance quality of life, and may also positively influence the course of illness

It is always important to remember that dying is still part of living and, as such, all focus must be given to ensuring patients’ and families’ needs are met at every opportunity. It is often the small things that make all the difference.

The core terms used within palliative care

Reflection point

Consider how you might feel when you arrive on duty to find a patient you cared for has died. Write these feelings down.

Some things you can do to help work though your feelings in this type of situation:

Find out which team members were on duty when the patient died and ask them what happened.

Find out if family members were present.

Be prepared to talk through how you are feeling and listen to the experiences and feelings of others.

NMC Domain 1: 1.8

NMC Domain 2: 2.1; 2.6

NMC Domain 3: 3.9

Activity

Make a list of the things that might improve the quality of a patient’s stay in hospital.

Link these thoughts to the activities you have already undertaken. This list can be used when you first go to your placement area to help you focus on patients’ needs in order to achieve a high quality of care. The list might help you to plan some of the outcomes you want to achieve while on the practice placement. These can be explored in your first interview with your mentor.

NMC Domain 1: 1.3;

NMC Domain 2: 2.2

Having spent some time exploring in detail what the definition of palliative care means in practice, we now look at some common terms that are linked to palliative care, to avoid misunderstanding both by the healthcare team and for patients and their families. Some common terms you may hear used in your practice placement include the following.

Terminal care

This refers to a period when, despite the best efforts of patients, carers, friends, relatives and the multidisciplinary team, symptoms become more difficult to manage. The onset and duration of this period are as unique as every human being (Buckley 2008). There can sometimes be confusion about how the word ‘terminal’ is used and understood. A person can be referred to as having ‘terminal cancer’, making reference to the fact that the cancer cannot be cured, however they may have months or years to live a good quality of life. At other times, the ‘terminal stage’ is when a patient is in the last days or hours of life.

End of life pathway

The End of Life Care Strategy(DH 2008) introduced the concept of a ‘pathway’ which would focus on the last year of life. This pathway is applicable to any patient diagnosis and helps health and social care professionals to plan ahead and ensure all the services possible are used to care of the patient and family. We return to this pathway when we look in detail at end of life best practice tools in Chapter 16.

Holistic care

Considering a patient and their life as a whole is the underpinning concept of ‘holistic viewpoint’ and is one of the foundations of palliative care. This includes spiritual, psychosocial and cultural factors as well as the wellbeing of family and friends. A patient can have their physical symptoms well managed, but if they are concerned about family members, making a will or financial worries they may become distressed. So, in order to see the whole picture from the patient’s perspective, we take the holistic approach. A patient experiencing a lot of distress associated with worries about family relationships is often referred to as ‘existential suffering’.

Voluntary agency

Activity

Access one of these voluntary agency Websites and explore the information that is available. Consider how much is relevant to the care of a person within the cancer and palliative care specialty. Follow through a theme you find of specific interest. Make notes on what you find out and be prepared to share this new knowledge with your mentor.

Macmillan Cancer Relief: http://www.macmillan.org.uk/Home.aspx (accessed November 2011).

Marie Curie Cancer Care: http://www.mariecurie.org.uk/ (accessed November 2011).

Sue Ryder Care: http://www.suerydercare.org/ (accessed November 2011).

This is an organisation funded mainly through voluntary money rather than through a government department. Some voluntary organisations are funded 50% by government money. It can be a registered charity and it may have staff in paid employment, as well as relying heavily on fundraising activities and volunteers. Some examples of voluntary organisations providing palliative care in England are Macmillan Cancer Relief, Sue Ryder Care and Marie Curie Cancer Care.

Palliative care today

Reflection point

Reflect on what you think and feel about the palliative care definition. Is there any part of it you are particularly worried about or don’t understand? Jot down your thoughts and use them as part of your first interview with your mentor to ensure your learning needs are met and you can achieve as much as possible from this practice placement.

NMC Domain 1: 1.1

NMC Domain 3: 3.4

Consideration of the dying and the care we provide has gained a much higher profile in recent years. It became recognised as a medical specialty in 1987 leading to a new training programme for doctors to work towards becoming consultants in palliative medicine (Doyle et al 2005). Palliative care consultants have an essential role in the multiprofessional team and can be found in hospices and teams covering both acute hospital wards and community settings.

In 2008, there were nearly half a million deaths in England, though the main cause of deaths has changed over the last 100 years. This is due to a variety of reasons:

• Discovery of penicillin has reduced infections.

• Improvements in living conditions; housing, sanitation and water supply.

• Improvements in midwifery care leading to a fall in infant mortality.

• Improvements in factories and workplace safety reducing industrial accidents.

• More people living in large cities leading to changes in lifestyle: more sedentary workers having less exercise alongside changes in diet leads to more long-term conditions, for example cancer, heart disease and stroke.

• Growth of hospitals and emergence of scientific medicine which can delay death, for example survival from a severe head injury.

• Emergence of special institutions to care for ‘the dying’ due mainly to the growth of the hospice movement.

In 2009, there were 220 hospice and palliative care units in the UK providing 3217 beds. Of these, 60 are run by the NHS and 160 are run by the voluntary sector including Sue Ryder Care and Marie Curie Cancer Care (Help the Hospices 2009).

Some of you will have a placement in one of these specialist units, while others will be applying the fundamental principles of palliative care nursing in a day-care department, acute oncology ward, haematology ward or an outpatient setting. Others may be providing palliative care in the acute setting of a medical or surgical ward.

In England, the Department of Health acknowledges the important role hospices and specialist palliative care have in the provision of care by suggesting they are the ‘beacons of excellence in end of life care delivery’ (DH 2008:10). The aim of this strategy has been to look at the main causes of death and consider examples of good practice across the country. It presents some core objectives to achieve high-quality care. These can be summarised as:

• being treated as an individual with dignity and respect

• being without pain and other symptoms

• being in familiar surroundings

• being in the company of close family and/or friends

• being given a choice and respected for choices made.

The End of Life Care Strategy (DH 2008) builds on the work of the NICE document Improving Supportive and Palliative Care for Adults with Cancer (NICE 2004) by linking these core objectives to achieving a ‘good death’.

When we consider what a good death is, we are thinking from our own personal viewpoint, beliefs, values and morals. This idea of morals links to the idea of ethical principles. We now look at what the term ‘ethics’ means.

Reflection point