End-of-life care
Objectives
• Define the key terms and key abbreviations listed in this chapter.
• Describe the factors that affect attitudes about death.
• Describe how different age-groups view death.
• Describe the five stages of dying.
• Explain how to meet the needs of the dying person and family.
• Describe palliative care and hospice care.
• Explain the purpose of the Patient Self-Determination Act.
• Explain what is meant by a “Do Not Resuscitate” order.
• Identify the signs of approaching death and the signs of death.
• Explain how to assist with post-mortem care.
• Perform the procedure described in this chapter.
Key terms
advance directive A document stating a person’s wishes about health care when that person cannot make his or her own decisions
autopsy The examination of the body after death
end-of-life care The support and care given during the time surrounding death
palliative care Care that involves relieving or reducing the intensity of uncomfortable symptoms without producing a cure
post-mortem care Care of the body after (post) death (mortem)
reincarnation The belief that the spirit or soul is reborn in another human body or in another form of life
rigor mortis The stiffness or rigidity (rigor) of skeletal muscles that occurs after death (mortis)
terminal illness An illness or injury from which the person will not likely recover
KEY ABBREVIATIONS
| DNR | Do not resuscitate |
| ID | Identification |
| OBRA | Omnibus Budget Reconciliation Act of 1987 |
End-of-life care describes the support and care given during the time surrounding death. Sometimes death is sudden. Often it is expected. Some people gradually fail. End-of-life care may involve days, weeks, or months.
According to the National Institute on Aging, most people die in hospitals or nursing centers. Hospice care is becoming a common option. Therefore, the health team sees death often. Many team members are not sure of their feelings about death. Dying persons and the subject of death cause discomfort. Death and dying mean helplessness and failure to cure. They also remind us that our loved ones and we will die.
Your feelings about death affect the care you give. You will help meet the dying person’s physical, psychological, social, and spiritual needs. Therefore you must understand the dying process. Then you can approach the dying person with caring, kindness, and respect.
See Teamwork and Time Management: End-of-Life Care.
Terminal illness
Many illnesses and diseases have no cure. Some injuries are so serious that the body cannot function. Recovery is not expected. The disease or injury ends in death. An illness or injury from which the person will not likely recover is a terminal illness.
Doctors cannot predict the time of death. A person may have days, months, weeks, or years to live. People expected to live for a short time have lived for years. Others have died sooner than expected.
Modern medicine has found cures or has prolonged life in many cases. Research will bring new cures. However, hope and the will to live strongly influence living and dying. Many people have died for no apparent reason when they have lost hope or the will to live.
Types of care
Persons with terminal illnesses can choose palliative care or hospice care. The person may opt for palliative care and then change to hospice care.
• Hospice care. Hospice care focuses on the physical, emotional, social, and spiritual needs of dying persons and their families (Chapter 1). Often the person has less than 6 months to live. No attempts are made to cure the person. It is not concerned with cure or life-saving measures. Pain relief and comfort are stressed. The goal is to improve the dying person’s quality of life. Hospitals, nursing centers, and home care agencies offer hospice care. Or a hospice may be a separate agency. Follow-up care and support groups for survivors are hospice services. Hospice also provides support for the health team to help deal with a person’s death.
Attitudes about death
Experiences, culture, religion, and age influence attitudes about death. Many people fear death. Others do not believe they will die. Some look forward to and accept death. Attitudes about death often change as a person grows older and with changing circumstances.
Dying people often need hospital, nursing center, hospice, or home care. The family is often involved in the person’s care. They usually gather at the bedside to comfort the person and each other. When death occurs, the funeral director is called. He or she takes the body to the funeral home to prepare it for funeral practices.
Many adults and children never have had contact with a dying person. Nor have they been present at the time of death. Some have not attended a visitation (wake) or funeral. They have not seen the process of dying and death. Therefore it is frightening, morbid, and a mystery.
Culture and spiritual needs
Practices and attitudes about death differ among cultures. See Caring About Culture: Death Rites. In some cultures, dying people are cared for at home by the family. Some families prepare the body for burial.
Spiritual needs relate to the human spirit and to religion and religious beliefs. They do not involve material or physical things. Rather, they involve finding meaning in one’s life. Some people need to resolve issues with family and friends. Many people strengthen their religious beliefs when dying. Religion provides comfort for the dying person and the family.
Attitudes about death are closely related to religion. Some believe that life after death is free of suffering and hardship. They also believe in reunion with loved ones. Many believe sins and misdeeds are punished in the afterlife. Others do not believe in the afterlife. To them, death is the end of life.
There also are religious beliefs about the body’s form after death. Some believe the body keeps its physical form. Others believe that only the spirit or soul is present in the afterlife. Reincarnation is the belief that the spirit or soul is reborn in another human body or in another form of life.
Many religions practice rites and rituals during the dying process and at the time of death. Prayers, blessings, scripture readings, and religious music are common and sources of comfort. So are visits from a spiritual leader—minister, priest, rabbi, or other cleric.
See Focus on Communication: Culture and Spiritual Needs.
Age
Infants and toddlers do not understand the nature or meaning of death. They know or sense that something is different. They sense that a caregiver is absent or that there is a different caregiver. They also sense changes in when and how their needs are met. They may feel a sense of loss.
Between 2 and 6 years old, children think death is temporary. It can be reversed. The dead person continues to live and function in some ways and can come back to life. These ideas come from fairy tales, cartoons, movies, video games, and TV. For example, a cartoon character is injured and dies. Later the character comes back to life, whole and intact. Children this age often blame themselves when someone or something dies. To them, death is punishment for being bad. They know when family members or pets die. They notice dead birds or bugs. Answers to questions about death often cause fear and confusion. Children who are told “He is sleeping” may be afraid to go to sleep.
Between 6 and 11 years, children learn that death is final. They do not think that they will die. Death happens to others, especially adults. It can be avoided. Children relate death to punishment and body mutilation. It also involves witches, ghosts, goblins, and monsters.
By age 11, death is more fully understood. Death is still viewed as something that happens to other people. One’s own death is an event in the distant future. Without correct information, they may have some wrong ideas. However, understanding increases as they grow older and have more experiences with death.
Adults fear pain and suffering, dying alone, and the invasion of privacy. They also fear loneliness and separation from loved ones. They worry about the care and support of those left behind. Adults often resent death because it affects plans, hopes, dreams, and ambitions.
Older persons usually have fewer fears than younger adults. They know death will occur. They have had more experiences with dying and death. Many have lost family and friends. Some welcome death as freedom from pain, suffering, and disability. Death also means reunion with those who have died. Like younger adults, many fear dying alone.
The stages of dying
Dr. Elisabeth Kubler-Ross described five stages of dying. They also are known as the “stages of grief.” Grief is the person’s response to loss.
Dying persons do not always pass through all five stages. A person may never get beyond a certain stage. Some move back and forth between stages. For example, Mr. Jones reached acceptance but moves back to bargaining. Then he moves forward to acceptance. Some people stay in one stage.
Comfort needs
Comfort is a basic part of end-of-life care. It involves physical, mental and emotional, and spiritual needs. For spiritual needs, see “Culture and Spiritual Needs” on p. 711. Comfort goals are to:
They may want family and friends present. They may want to talk about their fears, worries, and anxieties. Some want to be alone. Often they need to talk during the night. Things are quiet, distractions are few, and there is more time to think. You need to listen and use touch.
Some people may want to see a spiritual leader. Or they want to take part in religious practices. Provide privacy during prayer and spiritual moments. Be courteous to the spiritual leader. The person has the right to have religious objects nearby—medals, pictures, statues, writings, and so on. Handle these valuables with care and respect.
See Focus on Communication: The Person’s Needs.
FOCUS ON COMMUNICATION
The Person’s Needs
You may not know what to say to the dying person. That is hard for many experienced health team members. Unless you have been near death yourself, do not say “I understand what you are going through.” The statement is a communication barrier. Instead you can say:
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