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

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.

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.

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:

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.