1. Chapter 52 End-of-Life Care
Copyright © 2012 by Mosby, an imprint of Elsevier Inc. All rights reserved.

2. End-of-Life Care
End-of-life care describes the support and care given during the time surrounding death.
Death may be sudden or 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.
You must understand the dying process.
Then you can approach the dying person with caring, kindness, and respect.
The health team sees death often. Many team members are not sure of their feelings about death.
Your feelings about death affect the care you give.
You will help meet the dying person’s physical, psychological, social, and spiritual needs.
Review the Teamwork and Time Management: End-of-Life Care Box on p. 823 in the Textbook.
Copyright © 2012 by Mosby, an imprint of Elsevier Inc. All rights reserved.

3. Terminal Illness
Terminal illness is an illness or injury from which the person will not likely recover.
Many illnesses and diseases have no cure.
The body cannot function after some injuries.
Recovery is not expected.
The disease or injury ends in death.
Doctors cannot predict the time of death.
Hope and the will to live strongly influence living and dying.
A person may have days, months, weeks, or years to live.
Modern medicine has found cures or has prolonged life in many cases. Research will bring new cures. However, many people have died for no apparent reason when they have lost hope or the will to live.
Copyright © 2012 by Mosby, an imprint of Elsevier Inc. All rights reserved.

4. Terminal Illness (cont’d)
Persons with terminal illnesses can choose palliative care or hospice care.
Palliative care—focuses on relief of symptoms. The illness is also treated.
Care is for a long-term illness that will cause death.
Settings include hospitals, nursing centers, and the person’s home.
Hospice care—focuses on the physical, emotional, social, and spiritual needs of dying persons and their families. Hospice care is not concerned with cure or life-saving measures.
Often, the person has less than 6 months to live.
Hospitals, nursing centers, and home care agencies offer hospice care, or a hospice may be a separate agency.
The person may opt for palliative care and then change to hospice care.
Palliative care involves relieving or reducing the intensity of uncomfortable symptoms without producing a cure. The intent is to improve the person’s quality of life and provide family support.
Pain relief and comfort are stressed in hospice care. The goal is to improve quality of life.
Follow-up care and support groups for survivors are also services of hospice. Hospice also provides support for the health team to help deal with a person’s death.
Copyright © 2012 by Mosby, an imprint of Elsevier Inc. All rights reserved.

5. Attitudes About Death
Experiences, culture, religion, and age influence attitudes about death.
Attitudes about death often change as a person grows older and with changing circumstances.
Practices and attitudes about death differ among cultures.
In some cultures, dying people are cared for at home by the family.
Some families prepare the body for burial.
Many adults and children never have had contact with a dying person. They have not seen the process of dying and death. It is frightening, morbid, and a mystery.
Review the Caring About Culture: Death Rites Box on p. 824 in the Textbook.
Copyright © 2012 by Mosby, an imprint of Elsevier Inc. All rights reserved.

6. Attitudes About Death (cont’d)
Spiritual needs relate to the human spirit and to religion and religious beliefs.
Attitudes about death are closely related to religion.
Some believe in an afterlife; others do not.
There also are religious beliefs about the body’s form after death.
Some believe the body keeps its physical form
Others believe 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 people strengthen their religious beliefs when dying. Religion provides comfort for the dying person and the family.
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 as well as visits from a minister, priest, rabbi, or other cleric.
See the Caring About Culture: Death Rites Box on p. 824 in the Textbook.
Review the Focus on Communication: Culture and Spiritual Needs Box on p. 824 in the Textbook.
Copyright © 2012 by Mosby, an imprint of Elsevier Inc. All rights reserved.

7. Attitudes About Death (cont’d)
Age
Adults fear:
Pain and suffering
Dying alone
The invasion of privacy
Loneliness and separation from loved ones
Adults worry about the care and support of those left behind.
Adults often resent death because it affects plans, hopes, dreams, and ambitions.
Review the Focus on Children and Older Persons: Age Box on p. 824 in the Textbook.
Copyright © 2012 by Mosby, an imprint of Elsevier Inc. All rights reserved.

8. The Stages of Dying
Dr. Elisabeth Kübler-Ross described five stages of dying.
Stage 1: Denial
“No, not me” is a common response.
Stage 2: Anger
The person thinks “Why me?”
Stage 3: Bargaining
The person now says, “Yes, me, but ”
Stage 4: Depression
The person thinks, “Yes, me” and is very sad.
Stage 5: Acceptance
The person is calm and at peace.
Dying persons do not always pass through all five stages. Some move back and forth between stages.
The stages of dying are also known as the “stages of grief.” Grief is the person’s response to loss.
Some people are still in denial when they are dying.
Anger is normal and healthy. Do not take the person’s anger personally.
Often, the person bargains with God or a higher power for more time. Bargaining is usually private and spiritual.
The person mourns things that were lost and the future loss of life. The person may cry or say little.
Reaching the acceptance stage does not mean that death is near.
A person may never get beyond a certain stage. Some people stay in one stage.
Copyright © 2012 by Mosby, an imprint of Elsevier Inc. All rights reserved.

9. Comfort Needs
Comfort involves physical, mental and emotional, and spiritual needs.
Comfort goals are to:
Prevent or relieve suffering to the extent possible
Respect and follow end-of-life wishes
You need to listen and use touch.
Some people may want to see a spiritual leader.
Some want to take part in religious practices.
Provide privacy during prayer and spiritual moments.
Be courteous to the spiritual leader.
Handle religious objects with care and respect.
Comfort is a basic part of end-of-life care. For spiritual needs, see “Culture and Spiritual Needs” on p. 824 in the Textbook.
Dying persons 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.
You do not need to say anything. Being there for the person is what counts. Silence, along with touch, is a powerful and meaningful way to communicate.
Review the Focus on Communication: Comfort Needs Box on p. 825 in the Textbook.
Review the Focus on Children and Older Persons: Comfort Needs Box on p. 825 in the Textbook.
Copyright © 2012 by Mosby, an imprint of Elsevier Inc. All rights reserved.

10. Comfort Needs (cont’d)
Physical needs
Dying may take a few minutes, hours, days, or weeks.
To the extent possible, independence is allowed.
As the person weakens, basic needs are met.
Every effort is made to promote physical and psychological comfort.
The person is allowed to die in peace and with dignity.
Body processes slow. The person is weak. Changes occur in levels of consciousness.
The person may depend on others for basic needs and activities of daily living.
Copyright © 2012 by Mosby, an imprint of Elsevier Inc. All rights reserved.

11. Comfort Needs (cont’d)
Pain
Some dying person do not have pain. Others may have severe pain.
Pain management is important.
The following promote comfort:
Good skin care
Personal and oral hygiene
Back massages
Good alignment
Frequent position changes
Supportive devices
Always report signs and symptoms of pain at once.
The nurse can give pain-relief drugs. Preventing and controlling pain is easier than relieving pain.
Turn the person slowly and gently. Follow the care plan to prevent and control pain.
Copyright © 2012 by Mosby, an imprint of Elsevier Inc. All rights reserved.

12. Comfort Needs (cont’d)
Breathing problems
Shortness of breath and difficulty breathing (dyspnea) are common end-of-life problems.
Semi-Fowler’s position and oxygen are helpful.
Noisy breathing—called the death rattle—is common as death nears.
This is due to mucus collecting in the airway. These may help: the side-lying position; suctioning by the nurse; and drugs to reduce the amount of mucus.
An open window for fresh air may help some people. For others, a fan circulating air is helpful.
Copyright © 2012 by Mosby, an imprint of Elsevier Inc. All rights reserved.

13. Comfort Needs (cont’d)
Vision, hearing, and speech
Vision blurs and gradually fails.
Secretions may collect in the eye corners.
Good eye care is needed.
Hearing is one of the last functions lost.
Always assume that the person can hear.
Speech becomes harder.
It may be hard to understand the person.
Sometimes, the person cannot speak.
The person turns toward light. A darkened room may frighten the person.
Because of failing vision, explain who you are and what you are doing to the person or in the room.
The room should be well lit. However, avoid bright lights and glares.
Speak in a normal voice. Provide reassurance and explanations about care.
Anticipate the person’s needs. Do not ask questions that need long answers. Despite speech problems, you must talk to the person.
Copyright © 2012 by Mosby, an imprint of Elsevier Inc. All rights reserved.

14. Comfort Needs (cont’d)
Mouth, nose, and skin
Oral hygiene promotes comfort.
Oral hygiene is needed if mucus collects in the mouth and the person cannot swallow.
Crusting and irritation of the nostrils can occur.
Nasal secretions, an oxygen canula, and a naso-gastric tube are common causes.
Circulation fails and body temperature rises as death nears.
The skin is cool, pale, and mottled (blotchy).
Perspiration increases.
Skin care, bathing, and preventing pressure ulcers are necessary.
Frequent oral hygiene is given as death nears and when taking oral fluids is difficult.
Carefully clean the nose. Apply lubricant as directed by the nurse and the care plan.
Linens and gowns are changed as needed.
Although the skin feels cool, only light bed coverings are needed. However, observe for signs of cold. Prevent drafts and provide more blankets.
Copyright © 2012 by Mosby, an imprint of Elsevier Inc. All rights reserved.

15. Comfort Needs (cont’d)
Nutrition
Nausea, vomiting, and loss of appetite are common at the end of life.
As death nears, loss of appetite is common.
The person may choose not to eat or drink.
Elimination
Urinary and fecal incontinence may occur.
Constipation and urinary retention are common.
Enemas and catheters may be needed.
The doctor can order drugs for nausea and vomiting.
Some persons are too tired or too weak to eat. You may need to feed them. Favorite foods may help loss of appetite, so may small, frequent meals.
Do not force the person to eat or drink. Doing so may add to discomfort. Report refusal to eat or drink to the nurse.
Use incontinence products or bed protectors as directed. Give perineal care as needed.
Follow the care plan for catheter care.
Copyright © 2012 by Mosby, an imprint of Elsevier Inc. All rights reserved.

16. Comfort Needs (cont’d)
The person’s room:
Provide a comfortable and pleasant room.
Remove unnecessary equipment.
The person and family arrange the room as they wish.
This helps meet love, belonging, and esteem needs.
The room should reflect the person’s choices.
The room should be well lit and well ventilated.
Equipment that is upsetting to look at (suction machines, drainage containers) is kept out of the person’s sight if possible.
Mementos, pictures, cards, flowers, and religious items provide comfort. Arrange them within the person’s view.
Copyright © 2012 by Mosby, an imprint of Elsevier Inc. All rights reserved.

17. Comfort Needs (cont’d)
Mental and emotional needs are very personal.
Some persons are anxious or depressed.
Others have specific fears and concerns. Examples include:
Severe pain
When and how death will occur
What will happen to loved ones
Dying alone
The doctor may order drugs for anxiety or depression.
Simple measures may soothe the person—touch, holding a hand, back massage, soft lighting, music at a low volume.
Copyright © 2012 by Mosby, an imprint of Elsevier Inc. All rights reserved.

18. The Family This is a hard time for the family.
Show you care by being available, courteous, and considerate.
Family members usually can stay as long as they wish.
Respect the right to privacy.
However, do not neglect care because the family is present.
The family goes through stages like the dying person.
They need support, understanding, courtesy, and respect.
A spiritual leader may provide comfort.
You may find it hard to find comforting words. Use touch to show your concern.
Help make the family as comfortable as possible.
Most agencies let family members help give care.
Communicate the request for a spiritual leader to the nurse at once.
Copyright © 2012 by Mosby, an imprint of Elsevier Inc. All rights reserved.

19. Legal Issues Consent is needed for any treatment.
When able, the person makes care decisions.
Some people make end-of-life wishes known.
The Patient Self-Determination Act and OBRA give persons the right to:
Accept or refuse treatment
Make advance directives
An advance directive is a document stating a person’s wishes about health care when that person cannot make his or her own decisions.
Much attention is given to the right to die. Many people do not want machines or other measures keeping them alive.
Advance directives usually forbid certain care if there is no hope of recovery.
Quality of care cannot be less because of the person’s advance directives.
Agencies must inform all persons of the right to advance directives on admission. This information is in writing. The medical record must document whether or not the person has made them.
Copyright © 2012 by Mosby, an imprint of Elsevier Inc. All rights reserved.

20. Legal Issues (cont’d)
A living will is a document about measures that support or maintain life when death is likely.
A living will may instruct doctors:
Not to start measures that prolong dying
To remove measures that prolong dying
Durable power of attorney for health care gives the power to make health care decisions to another person (Health Care Proxy).
After consulting with the person and family, doctors often write “Do Not Resuscitate” (DNR) or “No Code” orders for terminally ill persons.
This means that the person will not be resuscitated.
When a person cannot make health care decisions, the health care proxy can do so.
You may not agree with care and resuscitation decisions. You must follow the person’s or the family’s wishes and the doctor’s orders. If these are against your personal, religious, and cultural values, discuss the matter with the nurse.
Copyright © 2012 by Mosby, an imprint of Elsevier Inc. All rights reserved.

21. Signs of Death In the weeks before death, the following may occur:
Restlessness and agitation
Shortness of breath
Depression
Anxiety
Drowsiness
Confusion
Constipation or incontinence
Nausea
Loss of appetite
Healing problems
Swelling in the hands, feet, or other body areas
Pauses in breathing
Copyright © 2012 by Mosby, an imprint of Elsevier Inc. All rights reserved.

22. Signs of Death (cont’d)
As death nears, the following signs may occur fast or slowly:
Movement, muscle tone, and sensation are lost.
Peristalsis and other gastro-intestinal functions slow down.
Body temperature rises.
Circulation fails.
The respiratory system fails.
Pain decreases as the person loses consciousness.
The signs of death include no pulse, no respirations, and no blood pressure.
The pupils are fixed and dilated.
A doctor determines that death has occurred.
The facial expression is often peaceful.
Abdominal distention, fecal incontinence, nausea, and vomiting are common.
The person feels cool or cold, looks pale, and perspires heavily.
The pulse is fast or slow, weak, and irregular. Blood pressure starts to fall.
Mucus collects in the airway. Breathing sounds are noisy and gurgling—commonly called the death rattle.
The doctor pronounces the person dead. The cause, time, and place are noted for the death certificate.
Review the signs of death listed on p. 827 in the Textbook.
Copyright © 2012 by Mosby, an imprint of Elsevier Inc. All rights reserved.

23. Care of the Body After Death
Care of the body after death is called post-mortem care.
A nurse gives post-mortem care.
You may be asked to assist.
Post-mortem care begins when the doctor pronounces the person dead.
Post-mortem care is done to maintain a good appearance of the body.
Discoloration and skin damage are prevented.
Valuables and personal items are gathered for the family.
Copyright © 2012 by Mosby, an imprint of Elsevier Inc. All rights reserved.

24. Care of the Body After Death (cont’d)
The right to privacy and the right to be treated with dignity and respect apply after death.
Within 2 to 4 hours after death, rigor mortis (the stiffness or rigidity of skeletal muscles that occurs after death) develops.
The body is positioned in normal alignment before rigor mortis sets in.
When an autopsy is done, post-mortem care is not done.
An autopsy is the examination of the body after death.
Follow agency procedures for an autopsy.
In some agencies, the body is prepared only for viewing by the family. The funeral director completes post-mortem care.
The coroner or the medical examiner can order an autopsy, or the family can request one.
Moving the body can cause remaining air in the lungs, stomach, and intestines to be expelled. When air is expelled, sounds are produced. They are normal and expected.
Review the Delegation Guidelines: Care of the Body After Death Box on p. 828 in the Textbook.
Review the Promoting Safety and Comfort: Care of the Body After Death Box on p. 828 in the Textbook.
Copyright © 2012 by Mosby, an imprint of Elsevier Inc. All rights reserved.