UNIT 81: Support Individuals at the End of Life
Understand the requirements of legislation and agreed ways of working to protect the rights of individuals at end of life;
1.1 Caring for patients at the end of life is a challenging task that requires not only the consideration of the patient as a whole but also an understanding of the family, social, legal, economic, and institutional circumstances that surround patient care. A legal requirement of end of life care is that the wishes of the individual, including whether CPR should be attempted, as well as their wishes how they are cared for after death are properly documented. This means that their rights and wishes even after death are respected.
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. Understand factors affecting end-of-life care
a) Birth and death are two aspects of life, which will happen to everyone.
b)Dying and death are painful and personal experiences for those that are dying and their loved ones caring for them.
c)Death affects each person involved in multiple ways, including physically, psychologically, emotionally, spiritually, and financially.
d)Whether the death is sudden and unexpected, or ongoing and expected, there is information and help available to address the impact of dying and death.
e)Although each person reacts to the knowledge of impending death or to loss in his or her own way, there are similarities in the psychosocial responses to the situation.
f)Kubler-Ross’ (1969) theory of the stages of grief when an individual is
dying has gained wide acceptance in nursing and other disciplines.
g)The stages of dying, much like the stages of grief, may overlap, and the duration of any stage may range from as little as a few hours to as long as months. The process vary from person to person.
h)Some people may be in one stage for such a short time that it seems as if they skipped that stage. Some times the person returns to a previous stage. According to Kubler- Ross, the five stages of dying are:
They are widely known as ‘DABDA’
- On being told that one is dying, there is an initial reaction of shock.
- The patient may appear dazed at first and may then refuse to believe the diagnosis or deny that anything is wrong.
- Some patients never pass beyond this stage and may go from doctor to doctor until they find one who supports their position. 2. Anger
- Patients become frustrated, irritable and angry that they are sick.
- A common response is,” Why me? ”
- They may become angry at God, their fate, a friend, or a family member.
- The anger may be displaced onto the hospital staff or the doctors who are blamed for the illness. 3. Bargaining
- The patient may attempt to negotiate with physicians, friends or even God, that in return for a cure, the person will fulfill one or many promises, such as giving to charity or reaffirm an earlier faith in God. 4. Depression
- The patient shows clinical signs of depression- withdrawal, psychomotor retardation, sleep disturbances, hopelessness and possibly suicidal ideation.
- The depression may be a reaction to the effects of the illness on his or her life or it may be in anticipation of the approaching death. 5. Acceptance
The patient realizes that death is inevitable and accepts the universality of the experience. Under ideal circumstances, the patient is courageous and is able to talk about his or her death as he or she faces the unknown. People with strong religious beliefs and those who are convinced of a life after death can find comfort in these beliefs. (http://currentnursing.com)
2.2 Attitudes toward end-of-life care are highly influenced by cultural perspectives that are rarely acknowledged. Cultures are maps of meaning through which people understand the world and interpret the things around them. When patients and health care workers have different cultural backgrounds, they frequently follow different “maps,” which can hinder effective communication.
Culture is a strong determinant of people’s views of the very nature and meaning of illness and death, of how end-of-life decisions can or should be controlled, how bad news should be communicated and how decisions – including end-of-life decisions – should be made. In addition, we tend to neglect the substantial differences in the way people of different Cultures perceive, experience and explain illness and death. Often, when patients and health-care workers come from different cultural backgrounds, they interact under the influence of unspoken assumptions about health, illness and dying that are so different that they prevent effective communication.
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. [ Every person’s end-of-life trajectory is different and needs differ in intensity and quality over time. End-of-life care must adapt to the varying and changing needs of the individual over time and that it cannot be limited to certain settings or services. The provision of good end-of-life care should be driven primarily by the concern to enhance quality of life at end-of-life, and should encompass all of its determinants and components.
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 caregiving 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.
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. http://www.mariecurie.org.uk Understand advance care planning in relation to end-of-life care
3.1 By discussing the care that an individual wishes with the care home you gain a more personalized 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 what is agreed is followed appropriately and correctly.
3.3 There may be conflict between physicians or nurses and family members about what constitutes appropriate care, decisions that are made when the individual lacks capacity, differences in religious beliefs, opinions on the ‘withdrawing’ or ‘withholding’ of treatment etc. www.endoflifecare.nhs.uk Be able to provide support to individuals and key people during end of life care
3.4 This is pertaining to how an individuals environment can be enhanced during end of life care. This could include simple changes such as rearranging furniture to make the home and the individuals care easier to manage. Perhaps moving an armchair or a bed in front of a window to enable the individual to gain a view and stimulate their senses. Simple factors such as a vase of flowers, softer lighting or maybe music to achieve a pleasant atmosphere. Understand how to address sensitive issues in relation to end-of-life care
4.1 It is important to record significant conversations during the end of life care, in the event of death so that there is no confusion about the will and testament or inheritance.
4.2 Factors that influence who should give significant news to an individual or key people are: 1) Should be close to that individual involved. Someone who is involved in that situation or news also. An expert on that significant news who will give or deliver the news to an individual.
4.3 Ethics involves critical reflection on morality. Ethical principles are not laws, but guiding principles about what is ?good? and what is ?bad?, that should direct 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 family members, or between different family members. Ethical dilemmas arise when there is a perceived conflicting duty to the patient, such as a conflict between a duty to preserve life and a duty to act in a patient’s best interests, or when an ethical principle such as respect for autonomy conflicts with a duty not to harm.
4.4 Determine if the problem relates to a legal, moral or ethical issue or a combination of the three. Make a list of the critical issues involved in the dilemma. [ For example, consider the parties who will be affected by the decision, and list all their rights as well as the dangers that could be posed to them. In addition, revisit the basic moral principles of justice, equality, being kind and charitable, respecting one another, being honest, not causing harm to another and the exercise of free will.
Identify who will benefit from what you choose to do and who will be hurt. It’s also wise to evaluate and weigh the seriousness of these harms and/or the quality of the benefits of your choice. Think about both short-term and long-term effects as well, as this also will help determine if the action is really worth it. Understand the role of organisations and support services available to individuals and key people in relation to end-of-life care
- Steinhauser, Karen E., et al. “Factors considered important at the end of life by patients, family, physicians, and other care providers.” Jama 284.19 (2000): 2476-2482.
- Cassel, Christine K., and Marilyn J. Field, eds. Approaching death: improving care at the end of life. National Academies Press, 1997.
- Teno, Joan M., et al. “Family perspectives on end-of-life care at the last place of care.” Jama 291.1 (2004): 88-93.