Information About End Of Life Care
Sometimes, cancer cannot be cured. When that is the case, patients and families are faced with complex emotions and a variety of end of life issues.
A terminally ill person has no expectation of a cure for his/her disease or illness, but still requires a lot of care and comfort. Knowing what a dying person understands about his/her condition, as well as his/her fears, feelings, emotions, and physical changes that occur, may help those around them make the diagnosis and final process easier to cope with.
The emotional, physical, and spiritual impact a dying friend, family member, or spouse has on a family and community cannot be measured. Understanding how people at different ages and developmental levels view death and dying may help to alleviate many of the fears and uncertainties associated with this process.
The concept of death:
Everyone has his/her own unique concept of death. Past experiences with death, as well as one's age, emotional development, and surroundings, are what most influence one's own concept of death. Movies, television, and books are filled with images of death. The person with a terminal condition may have previously lost a family member, friend, or pet. Treating death as a part of life is difficult, but may help alleviate some of the fear and confusion associated with it. Dealing with death must be done within the beliefs of the family.
How children and youth view death:
- Infant
For an infant, death has no real concept. Infants do, however, react to separation from parent(s), painful procedures, and any alteration in their routine. An infant that is terminally ill will require as much care, physically and emotionally, to maintain a comfortable environment as any age group. Maintaining a consistent routine is important for the infant and his/her caregivers. Because infants cannot verbally communicate their needs, fear is often expressed by crying. - Toddler
For the toddler, death has very little meaning. They may receive the most anxiety from the emotions of those around them. When a toddler's parents and loved ones are sad, depressed, scared, or angry, they sense these emotions and become upset or afraid. The terms "death" or "forever" or "permanent" may not have real value to children of this age group. Even with previous experiences with death, the child may not understand the relationship between life and death. - Preschooler
Preschool-aged children may begin to understand that death is something feared by adults. This age group may view death as temporary or reversible, as in cartoons. Death is often explained to this age group as "went to heaven." Most children in this age group do not understand that death is permanent, that everyone and every living thing will eventually die, and that dead things do not eat, sleep, or breathe. Death should not be explained as "sleep" to prevent the possible development of a sleep disorder.
Their experience with death is influenced by those around them. They may ask questions about "why?" and "how?" death occurs. The pre-school child may feel that his/her thoughts or actions have caused the death and/or sadness of those around. The pre-school child may have feelings of guilt and shame.
When a child in this age group becomes seriously ill, they may believe it is their punishment for something they did or thought about. They do not understand how their parents could not have protected them from this illness.
This idea may make the preschool-age sibling of a dying child to feel as if they are the cause of the illness and death. Young siblings of dying children need reassurance and comforting during this time period, as well. - School-age Child
School-aged children are developing a more realistic understanding of death. Although death may be personified as an angel, skeleton, or ghost, this age group is beginning to understand death as permanent, universal, and inevitable. They may be very curious about the physical process of death and what happens after a person dies. They may fear their own death because of uncertainty of what happens to them after they die. Fear of the unknown, loss of control, and separation from family and friends can be the school-aged child's main sources of anxiety and fear related to death. - Adolescent
As with people of all ages, past experiences and emotional development greatly influence an adolescent's concept of death. Most adolescents understand the concept that death is permanent, universal, and inevitable. They may or may not have had past experiences with death of a family member, friend, or pet.
Adolescents, similar to adults, may want to have their religious or cultural rituals observed.
Most adolescents are beginning to establish their identity, independence, and relationship to peer groups. A predominant theme in adolescence is feelings of immortality or being exempt from death. Their realization of their own death threatens all of these objectives. Denial and defiant attitudes may suddenly change the personality of a teenager facing death. An adolescent may feel as if they no longer belong or fit in with their peers. In addition, they may feel as if they are unable to communicate with their parents.
Another important concept among adolescents is self-image. A terminal illness and/or the effects of treatment may cause many physical changes that they must endure. The adolescent may feel alone in their struggle, scared, and angry.
It is important for parents to realize that children of all ages respond to death in a unique way. Children need support and, in particular, someone who will listen to their thoughts, and provide reassurance to alleviate their fears.
How adults deal with death:
Grief is a natural human response to the loss of a loved one. It can manifest itself in many ways. Grief moves in and out of stages from disbelief and denial, to anger and guilt, to finding a source of comfort, to eventually adjusting to the loss.
It is normal for both the dying person and the survivors to experience grief. For survivors, the grieving process can take many years and many forms. The challenge of accepting death and dying as the end stage of life is what the grieving process is all about.
What is anticipatory grief vs. sudden loss?
- Anticipatory grief occurs when someone has a prolonged illness, and the patient as well as the family anticipates death. Anticipating the loss of a loved one can be just as painful and stressful as the actual act of losing that person. Anticipatory grief allows the family to prepare for the inevitable death. This can be a time to resolve issues and concerns, seek the support of spiritual leaders, family, and friends, and clarify the loved one's wishes for funeral and burial arrangements and other end-of-life issues.
- Sudden loss is a death that happens unexpectedly and suddenly, such as a fatal accident or heart attack. Such tragedies can leave survivors feeling shocked and confused. Loved ones are often left with many questions, unresolved issues, and a range of emotions, including anger, guilt, and pain. Support from family, friends, and clergy is vital to persons experiencing sudden loss.
What may happen in the case of anticipated loss?
Many, although not all, persons facing their own death are willing to discuss issues of death and dying. This can be a time to discuss spiritual issues, resolve family concerns, reflect on a loved one's life and accomplishments, and express gratitude. It also provides an opportunity to put practical matters in order, including the following. Consider:
- Can funeral expenses be pre-paid?
- Which funeral home would the person prefer to handle arrangements?
- Can the person assist with obituary information to make sure it is accurate and complete?
- What are the individual's specific funeral wishes?
- If a church service is in order, can the person facing death help plan favorite Scripture passages or hymns?
- Is cremation or burial preferred?
- Has a cemetery plot been purchased?
- Does the person wish for memorial contributions to be made to a particular charity or benevolent organization?
- Can the person direct others regarding important practical issues, such as wills, bank accounts, lawyer's name, pension plans, retirement funds, and life insurance policies?
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