The Department of Health’s

The Department of Health’s 2008 End of Life Care Strategy, provides a comprehensive framework aimed at promoting high quality care for all adults approaching the end of life in all care settings in England. It sets out what adults reaching the end of their lives, and their carers can expect from the services provided to them and one of the key aims is to ensure as far as possible their needs and preferences for future care are met. The common factors include: Being treated as an individual, with dignity and respect

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Being without pain and other symptoms Being in familiar surroundings Being in the company of close friends and family The national institute for Clinical Excellence (NICE) End of Life Care Quality Standard, emphasises these expectations. The key points are: 1. A diagnosis that is arrived at as quickly as possible, with information about prognosis and treatment options explained sensitively, appropriately and in a jargon-free way. 2. Information that is provided as and when it is needed, in a format that is appropriate to their needs and abilities. 3.

Regular assessment and care planning that includes discussion about current and future care, is person-centred, and takes account of practical, physical, psychological, spiritual, social and religious needs and preferences. 4. Support for carers and family members including children, recognising the impact of bereavement upon them. 5. Care and support delivered seamlessly, by multidisciplinary teams working together to meet identified needs. 1. 2 When an individual is at the end of life, usually you are aware due to the documentation that is present.

(which is a legal requirement) In my job role I would read and acknowledge the rights and wishes of the individual, including any religious beliefs to ensure they are cared for according to their wishes. 2 2. 1 Often times, people feel uncomfortable talking to and interacting with a person who is dying. This is at least partly because we have no way to understand their perspective, and what they are experiencing mentally, emotionally, and spiritually.

Studying the Kubler-Ross theory and other approaches to the dying process can help us become more comfortable by increasing our understanding and adding insight into the perspective of the dying person. Hopefully this can begin to help increase communication and interaction during a dying person’s last days. Kubler-Ross Theory In 1969 Elizabeth Kubler-Ross wrote On Death and Dying. Research and interviews began in 1965 and encountered problems because there is no real way to study the psychological aspects of dying and patients were often willing to talk but it was hard to convince the doctors.

Stage Theory: From this research, Kubler-Ross saw a pattern emerging that she expressed in the way of stages. These stages begin when the patient is first aware of a terminal illness. While Kubler-Ross believed this to be universal, there is quite a bit of room for individual variation. Not everyone goes through each stage and the order may be different for each person. Stages of Dying Denial and Isolation: Used by almost all patients in some form. It is a usually temporary shock response to bad news. Isolation arises from people, even family members, avoiding the dying person.

People can slip back into this stage when there are new developments or the person feels they can no longer cope. Anger: Different ways of expression -Anger at God: “Why me? ” Feeling that others are more deserving. -Envy of others: Other people don’t seem to care, they are enjoying life while the dying person experiences pain. Others aren’t dying. -Projected on environment: Anger towards doctors, nurses, and families. Bargaining: A brief stage, hard to study because it is often between patient and God. -If God didn’t respond to anger, maybe being “good” will work. -Attempts to postpone: “If only I could live to see . . .

” Depression: Mourning for losses. 2. 2 Care of the dying- respect the personal wishes of a patient who may be dying and consult relatives/ friends about their wishes. Issues around death and dying in certain cultures are often surrounded by mystery and confusion. It is difficult to ask patients and carers questions about these sensitive issues when the patient is very ill or in the case of sudden death. It is critical, however, that these issues are not ignored and help should be sought from more experienced staff. The effects of inappropriate intervention can result in long term distress for the family in their bereavement. 2. 3

Key people could be family, doctors, carers, religious leaders etc. Each may own distinctive role to play in order for the choices and preferences of the individual to be respected and carried out. Peace of mind, less fear, a chance to accept the situation etc. The Mental Capacity Act – the capacity to make decisions, Best Interest, Lasting power of attorney 2. 4 As people approach the end of their lives, they and their families commonly face tasks and decisions that include a broad array of choices ranging from simple to extremely complex. They may be practical, psychosocial, spiritual, legal, existential, or medical in nature.

For example, dying persons and their families are faced with choices about what kind of caregiver help they want or need and whether to receive care at home or in an institutional treatment setting. Dying persons may have to make choices about the desired degree of family involvement in care giving and decision-making. They frequently make legal decisions about wills, advanced directives, and durable powers of attorney . They may make choices about how to expend their limited time and energy. Some may want to reflect on the meaning of life, and some may decide to do a final life review or to deal with psychologically unfinished business.

Some may want to participate in planning rituals before or after death. In some religious traditions, confession of sins, preparation to “meet one’s maker,” or asking forgiveness from those who may have been wronged can be part of end-of-life concerns. In other cultural traditions, planning or even discussing death is considered inappropriate, uncaring, and even dangerous, as it is viewed as inviting death (Carrese & Rhodes, 1995). All end-of-life choices and medical decisions have complex psychosocial components, ramifications, and consequences that have a significant impact on suffering and the quality of living and dying.

However, the medical end-of-life decisions are often the most challenging for terminally ill people and those who care about them. Each of these decisions should ideally be considered in terms of the relief of suffering and the values and beliefs of the dying individual and his or her family. In addition, any system of medical care has its own primary values that may or may not coincide with the values of the person. For example, in most Western medical systems the principles of individual autonomy (though not to the exclusion of family members and intimates) and informed consent are primary.

3 3. 1 By discussing the care that an individual wishes with the care home you gain a more personalised approach to caring. The individual also feels that they are more empowered and have more responsibility on how there care will be managed towards their end of life. It allows carers to know how the individual sees their end of life needs and reduces the risk of distress and upset to the individual. 3. 2 Advance care planning is to develop a better understanding and recording of their priorities, needs and preferences for the individual and those of their families/carers.

This should support planning and provision of care and enable better planning ahead to best meet these needs. This philosophy of ‘hoping for the best but preparing for the worst’ enables a more proactive approach, and ensures that it is more likely that the right thing happens at the right time. It allows for a detailed recording system that ensures that all parties that are involved in supporting the individual are aware of what they can do to comfort and understand the requests of the individual.

It is there for the individual to add additional information to which can be used to review other documents like care plans and advanced directives. If advance care planning is started early enough then this may aid in later life if mental issues become a concern. Questions could be: If their condition deteriorates where would they prefer as a place of care – care home, hospital or family home. What would they not like to happen – to be resuscitated? Do they have any particular items that they wish around them at the end of life period?

Do they have and spiritual or religious requirements at end of life? 3. 3 My role could be in being aware of the requests of the individual and if during any talks they have additional requests to ensure that they are documented and communicated to all the relevant parties. Another could have more a “hands on” role where I sit and discuss the advance care planning with the individual in depth of the first time; this may require a more delicate approach as it may cause distress. Either role will need comprehensive records maintained to ensure that the requests are as wished by the individual. 3. 4

There are many different issues that may occur from the discussions to raise an advance care planning document, some of these are listed below: Legal issues – Mental Capacity Act 2005. Does the individual have the mental capacity to understand the questions being asked? Person to represent the individual may have ‘lasting power of attorney’. Conflict with the wishes of the individual. Providing pain relieving drugs when not required may be classes as assisted suicide or euthanasia. Ethical issues – Withdrawing or withholding life supporting medical treatment. Patents may refuse basic care such as eating or drinking.

The individual needs to be made aware of all diagnosis and prognosis even if the individual does not have full mental capacity 4 4. 1 You can help the people you care for by being open with them, allowing them to talk about their fears. Or you can take the practical approach of helping them to fulfil any last wishes. Alternatively, if they wish, you may be able to arrange for someone to come and sit with the person during their last hours and days. 4. 2 The most important thing is that the person feels that their spiritual needs are being taken care of. Telling the people caring for you if you have particular religious or spiritual needs.

They may want a spiritual leader to visit you regularly during your last few weeks of life. Many people who have a faith find it helpful to talk to their religious adviser regularly in the weeks before they die. If you are in a hospital or hospice, the medical staff will write this in your notes. Then everyone involved in your care will be aware of your cultural or religious needs. 4. 3 One way to help an individual feel respected & valued throughout the end of life is to honour Advances directives. 4. 4 The patient’s family may have questions and most caregivers can provide information to help ease the mind.

Doctors generally do not provide estimates for fear of instilling false hopes or obliterate an individual’s hope. In most cases, the caregiver works along with physicians and follows professional instructions. Caregivers may call the physician or a nurse if the individual. experiences excessive pain. is in distress or having difficulty breathing. has difficulty passing urine or is constipated. has fallen and appears hurt. is depressed and wants to harm themselves. refuses to take prescribed medications, raising ethical concerns best addressed by a person with more extensive formal training.

or if the caregiver does not know how to handle the situation. Most caregivers become the patient’s listeners and let the individual express fears and concerns without judgment. Caregivers reassure the patient and honour all advanced directives. Caregivers respect the individual’s need for privacy and usually hold all information confidential. 4. 5 The environmental factors play an important part in an individual’s well being, and much more for an individual at the end of life care. For example, personalised the individual’s room is very important for the well being of the individual.

This can include simple things such as rearranging furniture in the room of the individual with the personal furniture of the individual, that help to make feel the individual like home, with the personal clock, the personal and favourite painting, objects such as personal books, personal perfume, a TV or a radio to listen a relaxing music, some personal pictures, religious pictures and objects in accordance with the individual’s religion. Examples of how an individual’s well-being can be enhanced by non-medical interventions are the following: Eat a healthy breakfast Drink at least 8 glasses of water

Take a good quality multiple vitamin and mineral Connect with other people Express your emotions appropriately Eat fruits and vegetables Spend at least 30 minutes outdoors Do something physically active Take some quiet time for yourself Keep regular sleep hours Establish a relationship with a doctor you can trust Examples of how an individual’s well being can be enhanced by use of equipment and aids, means how to open access for an individual who can’t walk for example. In this situation the use of a wheelchair is a radical change in the life of the individual who can’t walk.

The wheelchair allows the individual to personal autonomy. An individual who is wheelchair user can drive a car with the use of equipment and aids, can work, can have a life as normal as possible. Another example of how the use of equipment and aids can enhance an individual’s well being can be found with an individual who can’t talk. Communication can be achieved by technological aids. Here are some examples of alternative therapies: Acupuncture: Fine needles are introduced to specific points to stimulate, disperse, and regulate the flow of vital energy, and restore a healthy energy balance.

In addition to pain relief, acupuncture is also used to improve well-being and treat acute, chronic, and degenerative conditions in children and adults. Chiropractic: The chiropractic views the spine as the backbone of human health. Misalignments of the vertebrae caused by poor posture or trauma cause pressure on the spinal nerve roots, leading to diminished function and illness. Through manipulation or adjustment of the spine, treatment seeks to analyse and correct these misalignments. Dance or

movement Therapies: Dance or movement therapy uses expressive movement as a therapeutic tool for both personal expression and psychological or emotional healing. Practitioners work with people with physical disabilities, addition issues, eating disorders, and other concerns. Homoeopathy: A medical system that uses infinitesimal doses of natural substances, called remedies, to stimulate a person’s immune and defence system. Common conditions homoeopathy addresses are infant and childhood diseases, infections, fatigue, allergies, and chronic illnesses such as arthritis.

Hypnotherapy: By passing the conscious mind and accessing the subconscious, where suppressed memories, repressed emotions, and forgotten events may remain recorded. Hypnosis may facilitate behavioural, emotional, or attitudinal change such as weight loss, or smoking cessation. It is also used to treat phobias, stress, and as an adjunct in the treatment of illness. Vitamin Therapy: Vitamin usage combined with other treatments to address a range of illnesses and to enhance the functioning of the body’s systems and help to assists the immune system in combating diseases such as Chronic Fatigue Syndrome. 4.

6 Contributed to partnership working with key people to support the individual’s well being, can also be part of taking risk to improve the well being of the individual. For example, young individuals living with dementia, request to go outside to visit new places they wish to see. To resume, contributed to partnership working with key people to support the individual’s well being mean to be aware to the individual’s needs and to share with the key people in relation with the individual, what could improve the quality of life of the individual, to always make the well being of the individual a priority.

5 5. 1 The importance of recording significant conversations during end of life care for an individual, ensure to be sure the individual’s last wishes will be respected, such as the making of wills and living wills, and dealing with personal property. 5. 2 Factors that influence who should give significant news to an individual or

key people are: Factors should be in relation with the individual or key people A health professional who is involved with the individual health or key people health Expert on that significant news, who will give significant news to an individual or key people Others factors that influence who should give significant news to an individual or key people are, the individual’s choice, the individual’s capacity, the expert opinions or the opinions of those who know the individual and key people well such as psychologist, individual’s GP, and other expert who has the best information and who can answer questions to an individual or key people, like the attending surgeon. 5. 3 Ethics involves critical reflection on morality. Ethical principles are not laws, but guiding principles about what is good and what is bad, that should help doctors and other health care professionals in their work and decision making.

Issues arising over end of life care involving decisions that affect the nature and timing of an individual’s death raise difficult ethical conflicts for all concerned and can be a source of discord between health professionals within a team, health professionals and key people, or between other different family members. Ethical dilemmas arise when there is a perceived conflicting duty to the individual at the end of life, such as a conflict between a duty to preserve life and a duty to act in the best interests for the individual at the end of life, or when an ethical principle such as respect for autonomy conflicts with a duty not to harm. 5. 4

Ways to analyse conflicts and legal or ethical issues that may arise in relation to death, dying or end of life care mean to determine if the problem relates to a legal, moral or ethical issue or a combination of the three. 6 6. 1 The role of nursing and care homes that may contribute to end of life care is to provide adapted end of life care to accompany the individual until the end. A skilled nursing home control end of life care and is specialized in end of life care. The role of the nurse and care assistant in a nursing and care homes that may contribute to end of life care is a significant and vital role in the care of individuals that are in the final stage of life.

Individuals that are in the final stage of life need special and accurate cares. The end of life stage for an individual can be emotionally difficult, for the individual, for the key people, and for the medical staff. The role of specialist palliative care services that may contribute to end of life care is to provide expert advice and support about the assessment and management of symptoms. The role of domiciliary, respite and day services that may contribute to end of life care can be resumed such as the respite care service, by; they put their life on “pause” to provide the care that is required. It’s a very important responsibility. The role of funeral directors that may contribute to end of life care is varied.

A funeral director has many responsibilities that entail preparing the body for burial, making arrangements for viewing and services and coordinating all aspects of the service. This includes making sure that the individual wishes and key people wishes are carried out including religious customs. 6. 2 The role and value of an advocate in relation to end of life care is to support and enable individuals to express their views and concerns, to access information and services, to defend and promote their rights and responsibilities, and to explore choices and options 6. 3 While using an advocate, individuals at the end of life and their key people can focus more on recuperation or end of life care rather than handling the details surrounding care.

Using the services offered by an advocate can reduce individual and key people stress, lessen the chance of treatment and billing errors and help foster a greater sense of cooperation between the individual, key people, medical professionals and health insurance providers. 6. 4 Support for spiritual needs, such as religious beliefs are especially important for an individual at the end of life because during a particular difficult event of life, such as end of life that is a major event of life, the faith of an individual will help to access, with prayers, to give courage and to accept the situation. 6. 5 A range of sources of support to address spiritual needs can be found by having access to spiritual support from your local community faith leaders.

For example, if you are a member of the Christian religion, you can access spiritual support by going in your own church and determine the spiritual needs that cover your faith best. To resume, a range of sources of support to address spiritual needs means to have access to related spiritual support in accords of respect of your own beliefs, religion and culture. 7 7. 1 Line manager or Social worker: Support would best be offered by other members of the team such as, line manager or social worker, when an individual need to organise help with housework, shopping and cooking, or a personal care assistant to help with tasks such as washing and dressing.

Religious representatives: Support would best be offered by other members of the team such as, religious representatives, when an individual’s religious factors or cultural beliefs may impact on the decision making process of end of life care and so it is important to determine as far as possible whether they practised any particular faith as well as being able to ascertain cultural beliefs. Specialist nurse: Support would best be offered by other members of the team such as, specialist nurse, because a specialist nurse, district nurse or GP can tell to an individual how to access these healthcare professionals and about the specific types of help and support available in the area of the individual. Occupational or other therapist: Support would best be offered by other members of the team such as, occupational or other therapist, because they can visit the individual at home to assess whether specialist equipment that would help the individual to move around and to be able to do as much as possible the individual can do. 7. 2

Specialist palliative care nurses: Specialist palliative care nurses are experienced in assessing and treating your symptoms and also provide counselling and emotional support for you and your carers. Most specialist palliative care nurses work closely with a wider hospital or community palliative care team, which includes doctors and other healthcare professionals. Specialist palliative care nurses are sometimes referred to as Macmillan nurses. However many Macmillan professionals are nurses who have specialist knowledge in a particular type of cancer. You may see them when you’re at clinic or in hospital. Doctors: Doctors specialising in palliative medicine give expert medical advice on managing people with advanced disease. They work closely with palliative care nurses and may visit people at home if needed.

Nurses: Some community palliative care teams have nurses who can visit you at home and provide practical care such as washing, dressing and giving drugs. A specialist palliative care nurse will usually arrange care from these nurses. Physiotherapists: Physiotherapists can help ill people to move around. They can also help with pain relief and if you have breathing problems. Counsellors: Counsellors are trained to help people in all types of situations. Seeing a counsellor can help people to understand and express their feelings, and cope better with their situation. Spiritual care coordinators or chaplains: Spiritual care coordinators or chaplains offer spiritual care and support for an individual. 8 8. 1

To support individual’s care through the process of dying in my own role, means I will use the correct techniques; that include; timings; hygiene; use of equipment; safe disposal; and recording information, to offer appropriate support to individuals and key people such as family, friends, carers and others with whom the individual has a supportive relationship when they have been told about the time-scales of the individual’s death and the process of their dying. I will treat the individuals with values that adherence to codes of practice or conduct where applicable to my own role and the principles and values that underpin in my work setting, including the rights of children, young people and adults.

That include the rights; to be treated as an individual; to be treated equally and not be discriminated against; to be respected; to have privacy; to be treated in a dignified way; to be protected from danger and harm; to be supported and cared for in a way that meets their needs, takes account of their choices and also protects them; to communicate using their preferred methods of communication and language; and to access information about themselves. Preferred method of communication and language can include the individual’s preferred spoken language; the use of signs; symbols; pictures; writing; objects of reference; communication passports; other non-verbal forms of communication; human and technological aids to communication. Also, I have to take into consideration, factors that may affect the health, well-being and development of individuals.

Such factors may include adverse circumstances or trauma before or during birth; autistic spectrum conditions; dementia; family circumstances; frailty; harm or abuse; injury; learning disability; medical conditions (chronic or acute); mental health; physical disability; physical ill health; poverty; profound or complex needs; sensory needs; social deprivation; and substance misuse. Caring out my own role, to support an individual’s care through the process of dying, request a perfect hygiene and use of the personal protective equipment; such as apron, gloves and mask. Infection control is very important, washing of hands before and after wearing of personal protective equipment according to my workplace policy. For example; after disposed of my apron, gloves and mask in the clinical waste bin, I will washes and dry my hands thoroughly with the full hand washing technique to not contaminate myself or others.

Where possible, I will promote active support that encourages individuals to do as much for themselves as possible to maintain their independence and physical ability and encourages people with disabilities to maximise their own potential and independence. I will provide individuals with privacy and facilities to meet their immediate needs and give them time to adjust to the knowledge that they are dying. I will communicate with the individuals using their preferred method of communication and language, in an appropriate manner, and at a level and pace with which they are comfortable. I will support individuals and key people to identify any information they want.

I will work with others people within and outside my organisation that are necessary for me to fulfil my job role, to enable the information requested by individuals and key people to be accessed, within confidentiality agreements and according to legal and organisational requirements, and I will complete records in ways that can be understood by all who are authorised to access them. In my own role, to support individual’s care through the process of dying, means I will provide appropriate support and time to individuals who wish to express their feelings and communicate their concerns and to express their beliefs and preferences about their death, but in the same time, I will avoid pressurising them to talk about their death.

Where an individual finds it difficult or impossible to express their own preferences and make decisions about their life, achievement of this standard may require the involvement of advocates or others who are able to represent the views and best interests of the individual. Where there are language differences within the work setting, achievement of this standard may require the involvement of interpreters or translation services. Some individuals that have their key people, may want to identify the people they wish to be informed about their death, so I will contact calmly and without delay, the identified people so that they can be with the individuals when they die. I will fulfil any wishes expressed by individuals that are within my own role, responsibility and competence.

Appropriate action have to be take to inform others people within and outside my organisation of changes to individuals’ condition and any expressed wishes and preferences, that means I have to record and report on actions, procedures and outcomes within confidentiality agreements and according to legal and organisational requirements within my work place. Last, I have to manage appropriately any of my own feelings that have been aroused by the individual’s death. 8. 2 Addressing any distress experienced by the individual promptly and in agreed ways through the process of dying, do echo to understand the distress due to end of life care through the process of dying for an individual.

End of life care encompasses palliative care, which focuses on managing pain and other distressing symptoms, providing psychological, social, and spiritual support to individuals, and supporting their key people such as; family members; friends; individual’s carers; and others with whom the individual has a supportive relationship. Palliative care can be provided at any stage in the progression of an individual’s illness, not only in the last days of an individual’s life when the focus of treatment has generally moved from trying to actively manage disease and prevent deterioration to managing the individual’s symptoms and keeping the individuals comfortable.

The most difficult and sensitive decisions through the process of dying are often those around starting, or stopping, potentially life prolonging treatments such as cardio pulmonary resuscitation, renal dialysis, clinically assisted for nutrition and hydration, and mechanical ventilation. These treatments have many potential benefits including extending the lives of the individuals who otherwise might die from their underlying condition. But in some circumstances they may only prolong the process of dying or cause to the individual unnecessary distress. The benefits, burdens and risks of these treatments are not always well understood and concerns can arise about over or under treatment, particularly where there is uncertainty about the clinical effect of a treatment on the individual, or about how the benefits and burdens for that individual are being assessed.

Doctors and nurses, with other members of the team, such as; line manager, religious representatives, specialist nurse, occupational or other therapist, social worker, GP, district nurses, nurses who specialise in a specific disease, specialist palliative care nurses, physiotherapists, counsellors, spiritual care coordinators or chaplains, and key people involved in the decision making process may also be unclear about what is legally and ethically permissible, especially in relation to decisions to stop a potentially life prolonging treatment. 8. 3 To adapt support to reflect the individual’s changing needs or responses, make think why the individual needs or responses are changing. Individual’s changing needs or responses can be cause due to many factors. Be aware of possible signs of dementia in the individuals with whom you work. Dementia is a term used to describe various different brain disorders that have in common a serious loss of brain function that is usually progressive and eventually severe, in an individual previously unimpaired, beyond what might be expected from normal ageing. That means, when individuals seen confused in their needs or