The Principles of End of Life Care Introduction Certificate in the Principles of End of Life Care Welcome to this Level 2 Certificate in the Principles of End of Life Care. SA We hope you find all of the information contained in this resource pack interesting and informative. This learning resource and the assessment questions have been approved by NCFE as a great way to meet the learning outcomes for this qualification. (A complete list of the learning outcomes can be found on the last page of this resource.) The course is made up of three parts (A, B, and C). This is Part A which contains two units: UNIT 1: Understand how to work in end of life care PL M UNIT 2: Care planning in end of life care E As you start to read through each page you will be able to make notes and comments on things you have learnt or may want to revisit at a later stage. At the end of each section you will be asked to answer the relevant assessment questions. Once you have answered the questions, go to the next section and continue studying until all of the assessment questions have been completed. Please make sure that you set aside enough time to read each section carefully, making notes and completing all of the activities. This will allow you to gain a better understanding of the subject content, and will help you to answer all of the assessment questions accurately. Good luck with your study. Now let s begin! 1
Unit 1: Understand how to work in end of life care Welcome to unit one. This unit is split into four sections. These are: Section 1: Different perspectives on death and dying Section 2: Aims, principles and policies of end of life care Section 3: Communication in end of life care Section 4: Accessing support services Section 1: Different perspectives on death and dying This section will explore the following: The factors that can affect an individual s views on death and dying Your own views on death and dying How factors affecting views on death and dying can impact on practice How attitudes of others may influence views on death and dying. 2
The factors that can affect an individual s views on death and dying Many different factors can affect an individual s views about death and dying, and therefore their needs and preferences for their end of life care. These factors include: Social factors Cultural factors Religious factors Spiritual factors Psychological or emotional factors. Social factors Social factors that can influence peoples views about death and dying are: Age: Most young adults and older people prefer to be cared for at home as long as high quality care can be assured and as long as they do not place too great a burden on their families and/or carers. However, research has shown that some people, particularly older people who live alone 65 years onwards, wish to stay at home as long as possible, although they wish to die elsewhere so they are not alone when they die. Attitudes to death and dying can change over the course of a person s lifetime. As people grow older, death becomes more relevant and people may become less comfortable discussing the issues. Gender: Gender is a factor in how people view death and dying because research has indicated that the greatest worry for females is being a burden to their family and carers, whilst males worry more about the financial implications of their death for their family. Social attitudes to death: People tend to live longer and often die in hospitals or hospices, so death has become hidden in today s society. It is removed from people s everyday lives and people become more reluctant to talk about it or plan for it. 3
The Principles of End of Life Care Cultural factors Q. What is culture? A. Culture in its broadest sense, refers to the worldview, values, norms and behaviour guidelines shared by a group of individuals. Some of the cultural factors that affect peoples views on death and dying include: SA Culture may define how a person acts and grieves when death has occurred for example, in some cultures death is not viewed as the end but a new beginning. Some cultures believe that open discussions about dying and death are disrespectful and impolite, whilst other cultures believe that speaking about death makes it real. Religious factors Q. What is religion? E PL M A. Religion is an established system of symbols, beliefs, rituals and text shared by a community of faith. A person s religion can be an enormous source of support and strength for dying people and their families. In relation to end of life care, an individual s religion may define how they deal with the process of dying, death and bereavement. Some religions believe in an afterlife, whilst some religions believe in re-incarnation. These beliefs will have an important effect on how they view their own death. 4
The Principles of End of Life Care Spiritual factors Q. What is spirituality? A. Spirituality is related to human needs for the meaning and purpose of life, hope, forgiveness, for acceptance and peace of mind. SA There is close association between religion and spirituality, but even those without religious beliefs may have spiritual needs related to regret, the meaning, value and purpose of their lives. Ways in which spirituality can affect peoples views of death and dying include their feelings about: The meaning, value and purpose of their life. Some people may look back and feel a sense of pride in their life achievements. Some people may have regrets about their life, the things they wanted to achieve and never had. Important relationships they have had in their lives for example; being a father, mother, a wife, a daughter. Their sense of well-being and purpose resolves around these roles. Any pets they may have had giving them a feeling of being needed and loved unconditionally. Leisure pursuits that have given them a sense of spiritual well-being for example, music, fishing, the arts. Cultural, religious and family traditions. Some people view their spirituality as part of their religion, culture or family traditions and may experience feelings of longing for their family, culture or religion. Key life events which gave them feelings of well-being, happiness or achievement. Some people may focus on life events and view them negatively, feeling resentment, guilt or regret about past decisions. E PL M 5
Psychological or emotional factors Psychological and emotional factors can influence how people view death and dying in particular the experience of the recent death of a loved one. In these circumstances they are more likely to discuss issues around end of life such as planning and preferences. Your own views on death and dying As a care worker in end of life care, an important way to raise your awareness and understanding of individuals views on death and dying is to think about your own views and the factors that influence them.! STOP AND THINK! Think about your own views about death and dying. What would be your wishes and preferences? What factors in your life have an influence on your views? Note down your thoughts below. Key Fact Thinking about your own views about end of life will enable you to empathise with the views of those you are caring for. 6
The Principles of End of Life Care How factors affecting views on death and dying can impact on practice In today s society, death and dying are still taboo subjects not only for the public but also many health and social care professionals. Many people have not seen a dead person. The care of the deceased is now commonly undertaken by funeral directors who perform the care tasks and rituals associated with caring for the deceased, whereas in previous centuries, this was undertaken by the family or the community. PL M SA This has resulted in a lack of openness and discussion about death which has an impact on practice in the following ways: People fear the dying process and death Close relatives, health and social care professionals may not be aware of the individual s wishes and preferences for treatment and therefore not know how best to support and help them People may not want to discuss their funeral wishes People die without making a will because they think it is tempting fate There is a lack of public and professional discussion regarding the dying process and death There is a lack of knowledge and understanding of death, dying and the grieving process. E 7
A Activity 1: How views on death and dying can affect practice in end of life care Review the information that you have learnt so far and note down some examples of how you think views about death and dying could effect end of life care practice. 8
Did you consider the following examples? Social factors, such as attitudes to different diseases, may lead to value judgements about dying and how people are therefore treated for example, some diseases could be viewed as self-inflicted such as liver failure due to alcohol abuse, whereas a person dying from cancer may be viewed as just bad luck. Social attitudes towards sexuality may lead to discrimination in end of life care. When people who are in a same sex relationship have not been declared in a civil partnership, they have no rights in relation to involvement in decision-making and in some cases the funeral arrangements. Social attitudes to death as a taboo subject may prevent people discussing and planning for end of life with care professionals. Cultural factors mean that end of life care workers need to be aware and sensitive to the different cultural needs of the person. The UK is a diverse society in relation to culture and ethnicity. Cultural factors mean that care professionals must be more aware of language differences. If English is not the first language, the person may experience difficulties in accessing healthcare and understanding any information given to them. Religious factors impact on practice because the UK is not a purely Christian community. Healthcare professionals now need to have an understanding of the world religions in order to provide high quality end of life care and decision-making. Religious factors also impact on practice because, for those with a strong faith, religious coping can result in less use of end of life care planning and less use of advanced decisions. People may view what is happening to them as the will of God. 9
How attitudes of others may influence views on death and dying The attitudes of others may influence an individual s choices or perspectives concerning death and dying. The person who is reaching end of life may be influenced by others in the following ways: The information that care professionals such as GPs, nurses and care workers tell them about their illness and its prognosis may influence people to make plans in the event of death. GPs, Practice and District Nurses can provide information on a one-to-one basis. Raising awareness, both of what is available and why it is important, could influence people to plan for end of life. Family, friends and significant others such as partners may have negative attitudes to their approaching death for example, people who feel comfortable discussing death and their preferences may be prevented by relatives who are unwilling to engage in the discussion. Relatives can be reluctant to discuss plans for end of life as they do not want to consider a family member dying. Also, they sometimes prevent plans from being followed if they are not properly informed or supported. R Further Research: Attitudes towards death Use the link below to download a copy of, Attitudes Towards Death and Dying in the East of England - Qualitative Report: Research to Inform the Development of Social Marketing Interventions on Palliative and End of Life Care (Ipsos/MORI 2010). www.ipsos-mori.com/assets/docs/publications/attitudes-towardsdying-2011-qualitative-report.pdf Key Fact It is important not to make assumptions about a person s perspectives on death and dying, but to undertake an assessment in order to be able to provide the person and their significant others with the support and help that they require. 10
Let s Summarise! Take a few moments to answer the following questions to help you summarise what you have learnt in this section. This will help you answer the questions in your assessment booklet. 1. What are three social factors that can affect a person s views in death and dying? 2. How has a lack of openness and discussion about death had an impact on practice? 3. How might the attitudes of care professionals influence a person s choices about death and dying? Check your answers by looking back over this section. CONGRATULATIONS, YOU HAVE NOW COMPLETED SECTION 1. PLEASE NOW GO TO YOUR ASSESSMENT BOOKLET AND ANSWER QUESTIONS Q1 TO Q4. 11
The Principles of End of Life Care Section 2: Aims, principles and policies of end of life care This section will explore the following: The aims and principles of end of life care The importance of promoting an individual s dignity at end of life The importance of maintaining comfort and well-being at end of life SA The stages of your local end of life pathway Local and national policy and guidance for care after death. The aims and principles of end of life care End of life care aims to: M Place the person at the centre of the caring process Consult and involve the person in decisions regarding their care Recognise that in addition to their physical symptoms, people have emotional, social and spiritual needs that should be addressed by a multi-disciplinary team Maintain and enhance quality of life for individuals and their families wherever possible PL Provide bereavement support for families and carers after someone has died. E 12
There are 10 objectives which need to be achieved to fulfil these aims: 1. Increase public awareness and discussion of death and the dying process. 2. Ensure all people are treated with dignity and respect at the end of their lives. 3. Ensure pain and suffering of people at the end of their lives is kept to a minimum for the best possible quality of life. 4. Ensure all people approaching the end of their lives have access to physical, psychological, social and spiritual care. 5. Ensure people s individual needs, priorities, preferences for end of life care are assessed, recorded, reviewed, respected and acted upon where possible. 6. Ensure that the many services required by people at the end of their life are well coordinated so that the individual and their family receive seamless care. 7. Ensure high quality care is provided in the last days of a person s life and into bereavement. 8. Ensure all carers are properly supported both during the person s remaining life and into bereavement. 9. Ensure health and social care professionals at all levels are provided with the necessary education and training to enable them to provide high quality care. 10. Ensure that services provide good value for money. Key Fact The aim of end of life care is to bring high quality care to all people approaching the end of their life regardless of their age, gender, ethnicity, religious beliefs, sexual orientation, socioeconomic status and diagnosis. 13
The Principles of End of Life Care The importance of promoting an individual s dignity at end of life Q. What is dignity? M SA A. Dignity is concerned with how people feel, think and behave in relation to the worth or value of themselves and others. To treat someone with dignity is to treat them as being of worth, in a way that is respectful of them as valued individuals. (Royal College of Nursing (RCN) 2008) The RCN says that it is important to support the person receiving care in a way that promotes their dignity because: When dignity is present people feel in control, valued, confident, comfortable and able to make decisions for themselves. When dignity is absent people feel devalued, lacking control and comfort. They may lack confidence and be unable to make decisions for themselves. They may feel humiliated, embarrassed or ashamed. Dignity applies equally to those who have capacity and to those who lack it. Everyone has equal worth as human beings and must be treated as if they are able to feel, think and behave in relation to their own worth or value. E PL Key Fact The care team should treat all people in all settings and of any health status with dignity, and dignified care should continue after death. 14