The historical developments of palliative care

The core role of palliative care is about relieving symptoms in advanced disease while supporting both patients and relatives by providing holistic-focused care.

The term ‘palliative care’ emerged with the growth of the hospice movement in England in the 1960s yet has its roots back to fifteenth century international history. The words ‘palliate’ and ‘pallium’ are both from late Latin, meaning to ‘cloak or conceal’. The aim of palliative care is to cloak and conceal the symptoms of the disease rather than provide a cure. For example, a patient with a brain tumour might be experiencing confusion, nausea and pain due to inflammation of the cerebral meninges in the brain due to growth and pressure from the cancer. Administering a steroid like dexamethasone may help to reduce this inflammation and settle these distressing symptoms. This treatment, while helping to attain comfort, will not stop the tumour growth. However, symptoms are hopefully ‘cloaked and concealed’ and comfort is achieved for the patient with the overall aim of increasing the quality of life.

Growth of the hospice movement

As far back as 2000 years ago, institutions across the world have cared for weary travellers. These included the homeless, pregnant women and migrant workers who were offered food, warmth and shelter. Often the ill and vulnerable would remain at these places of refuge to be cared for until they died. The term ‘hospice care’ emerged from these places of care: ‘hospes’ is Latin for host; ‘hospitium’ is Latin for hospitality. The term ‘hospice’ was first applied to the care of the dying by Madame Jeanne Garnier who founded the Dames de Calaire hospice in Lyon, France in 1842.

The meaning of palliative care

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Find out where the nearest hospice is to where you are studying. What is the history of this hospice? Find out about the types of patients who are cared for there. Patients on your practice placement might be aware of this hospice, it might be something they need explaining about or are fearful of. They may have a family member or friend who has died there. Having the information to give is important in helping to reduce anxiety. The hospice may be a place you can visit from your ‘hub’ practice placement. Some of you may even have your main placement in a hospice.

NMC Domain 1: 1.1; 1.4; 1.6

NMC Domain 2: 2.1; 2.4; 2.5

NMC Domain 3: 3.9

NMC Domain 4: 4.1

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.

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