27 end-of-life care 1. define important words in this chapter anticipatory grief a period of...

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1. Define important words in this chapter

anticipatory grief a period of mourning when the dying person or his family is expecting the death.

autopsy an examination of a body by a pathologist to try to determine the cause of death.

bereavement the period following a loss in which mourning occurs.

complicated grief grief complicated by disorders or conditions, such as depression and substance abuse.

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cremation the process of burning a dead body until it turns to ash.

death the end of life; the cessation of all body functions.

grief a deeply emotional process that is a response to loss.

grief process the varying emotional responses to grief.

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grief therapy therapy to try to resolve problems due to separation from the deceased.

mourningthe period in which people work to adapt to a loss; influenced by culture, tradition, and society.

palliative care care given to people who have serious, life-threatening diseases; goals are to control symptoms, reduce suffering, prevent side effects and complications, and maintain quality of life.

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pathologista doctor with advanced training in the examination of organs and tissues.

postmortem care care of the body after death.

rigor mortis Latin for “stiffness of death;” refers to the stiffness that occurs after death due to muscles becoming rigid.

terminal illness a disease or condition that will eventually cause death.

unresolved grief grief that continues beyond what is considered a reasonable period of time; may affect the person’s ability to function.

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2. Describe palliative care

Define the following term:palliative care

care given to people who have serious, life-threatening diseases; goals are to control symptoms, reduce suffering, prevent side effects and complications, and maintain quality of life.

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Understand the goals of palliative care:• Control symptoms• Reduce suffering• Prevent side effects• Maintain quality of life• Emphasize holistic approach

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REMEMBER:Palliative care works to manage symptoms, not cure the disease.

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3. Discuss hospice care

Define the following terms:terminal illness

a disease or condition that will eventually cause death.death

the end of life; the cessation of all body functions.

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When a serious illness is classified as a “terminal illness,” or a disease or condition that will eventually cause death, hospice care is often the next step.

This type of care is a compassionate way to care for dying people and their families. Hospice care uses a holistic approach.

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Remember these points about and goals of hospice care:• Ordered by a doctor for a person who has six month or less to

live• Can be given in a hospital, care facility, or in the home• Uses a holistic approach• Provides alternative to traditional care• Offers medically-directed, team-managed care• Focuses on resident and family as a unit

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Points about and goals of hospice care (cont’d.):• Offers compassionate care• Focuses on soothing and comfort care, rather than curative

care• Emphasizes pain and symptom management• Offers assistance for psychosocial needs• Helps family obtain financial counseling and legal assistance

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REMEMBER:You should report complaints of pain or signs of pain immediately.

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Think about this question:Why is it important that residents who are dying have control over their lives for as long as they are able?

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4. Discuss the grief process and related terms

Define the following term:grief

a deeply emotional process that is a response to loss.

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Understand Dr. Elisabeth Kubler-Ross’s five stages of grief (On Death and Dying):• Denial: refusal to believe they are dying• Anger: “Why me?”• Bargaining: “Yes me, but…”• Depression: need to mourn and review their lives• Acceptance: preparing for death

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REMEMBER:Not every resident goes through all of these stages or goes through them in this order.

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Some terms you may hear that are associated with death and dying include the ones that follow on the next several slides.

In working with residents who are dying, as well as their families, it is important to be familiar with these terms and what they mean.

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Define the following terms:anticipatory grief

a period of mourning when the dying person or his family is expecting the death.

bereavement the period following a loss in which mourning occurs.

complicated grief grief complicated by disorders or conditions, such as depression and substance abuse.

grief process the varying emotional responses to grief.

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Define the following terms:grief therapy

therapy to try to resolve problems due to separation from the deceased.

mourningthe period in which people work to adapt to a loss; influenced by culture, tradition, and society.

unresolved grief grief that continues beyond what is considered a reasonable period of time; may affect the person’s ability to function.

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5. Explain the dying person’s rights

When a person is dying, there are legal rights that must be respected. Remembering these rights will help you provide proper care, as well as promote the dying person’s dignity.

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Transparency 27-1: Rights to Remember When Caring for the Terminally Ill

• The right to have visitors• The right to privacy• The right to be free from pain• The right to honest and accurate information• The right to refuse treatment

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1. The right to have visitors• It may be inconvenient to have visitors coming and going at

odd hours, but when death is close, it is an emotional time for all those involved.

• Saying goodbye can be a very important part of dealing with a loved one’s death.

• It may also be very reassuring to the dying person to have someone in the room, even if they don’t seem to be aware of their surroundings.

• Only report a visitor if he is disruptive or he becomes a threat.

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2. The right to privacy• Privacy is a basic right, but why may privacy for visiting be

even more important now?

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3. The right to be free from pain• It is very important to monitor dying residents for signs that

they are in pain. If they can no longer speak, how else can you tell if a resident may be in pain?

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4. The right to honest and accurate information• Residents have the right to honest information about what is

happening and what their diagnosis is. Refer medical questions that are outside your scope of practice to the nurse.

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5. The right to refuse treatment• Have you ever cared for someone who did not want more

treatment? How did you feel about that?• We need to remember that whether we agree or disagree with

the decisions, the choice is not ours, but belongs to the person involved.

• Sometimes, when residents are not capable of making a decision, they have told their family how they wish things to be done. Be supportive of family members; do not judge them. They are probably following the person’s wishes.

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Handout 27-1: The Dying Person’s Bill of Rights

I have the right to:• be treated as a living human being until I die.• maintain a sense of hopefulness, however changing its

focus may be.• be cared for by those who can maintain a sense of

hopefulness, however changing this may be.• express my feelings and emotions about my approaching

death in my own way.• participate in decisions concerning my care.• expect continuing medical and nursing attentions even

though “cure” goals must be changed to “comfort” goals.• not die alone.• be free from pain.• have my questions answered honestly.• not be deceived.

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Handout 27-1: The Dying Person’s Bill of Rights (cont’d.)

• I have the right to:• have help from and for my family in accepting my death.• die in peace and dignity.• retain my individuality and not be judged for my decisions

which may be contrary to beliefs of others.• discuss and enlarge my religious and/or spiritual

experiences, whatever these may mean to others.• expect that the sanctity of the human body will be

respected after death.• be cared for by caring, sensitive, knowledgeable people

who will attempt to understand my needs and will be able to gain some satisfaction in helping me face my death.

(This was created at a workshop on “The Terminally Ill Patient and the Helping Person,” sponsored by Southwestern Michigan In-service Education Council, and appeared in the American Journal of Nursing, Vol. 75, January, 1975, p. 911.)

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Think about this question:Why are these rights important for the dying person?

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6. Explain how to care for a dying resident

Remember these guidelines for care of the dying resident:Skin, Nose and Mouth care• Give frequent skin care.• Bathe often.• Change gowns and sheets often.• Give incontinence care promptly.• Turn and reposition often.• Give oral care frequently.• Offer ice chips.• Use lubricant on nose and mouth.

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Guidelines for care of the dying resident (cont’d.):Pain Control and Comfort• Pain relief is critical.• Observe and report signs of pain.• Adjust blankets for temperature changes.

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Guidelines for care of the dying resident (cont’d.):Diminished Senses• Keep room softly lit.• Use alternate forms of communication.• Speak normally and describe care that is being performed.

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Guidelines for care of the dying resident (cont’d.):Breathing Problems• Report gurgling or rattling.• Elevate the head of the bed and change positions as ordered.

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Guidelines for care of the dying resident (cont’d.):Food and Fluid Issues• Feed residents slowly.• Encourage fluids.• Do not force residents to eat or drink.• Report nausea, vomiting and diarrhea.• Elevate head of bed.

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7. Discuss factors that influence feelings about death and list ways to meet residents’ individual needs

Define the following term:cremation

the process of burning a dead body until it turns to ash.

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Know the factors that influence feelings and attitudes about death:• Experience with death• Personality type• Religious beliefs• Cultural background

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After death, cultural and spiritual beliefs play an important role. Some groups share food, play music, and talk about the person who has died. Customs may include burying personal items with the body or having specific rules on washing the body after a person has died. Some bury their dead in a coffin, while others prefer to be cremated.

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REMEMBER:It is important to honor individual practices and traditions without judging them.

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Think about this question:Are there practices or traditions regarding death that are different from your own that bother you? Think about why this may be and what you can do to address this.

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Remember these guidelines for understanding the psychosocial and spiritual needs of dying residents:• Do not isolate or avoid resident.• Listen more; talk less.• Do not judge.• Do not discuss personal religious beliefs or try to change

resident’s beliefs.

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Guidelines for understanding psychosocial and spiritual needs of dying residents (cont’d.):• Notify the nurse if resident requests visit from spiritual leader.• Provide privacy for visits.• Never share anything private with others, except for the

nurse.• Inform the nurse if resident has expressed fear of dying.

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8. Identify common signs of approaching death

When a person is dying, all body systems are affected.

Know these signs of approaching death:• Cyanotic, pale, or darkening skin or mucous membranes• Cold skin• Skin that looks bruised (mottling)• Heavy perspiration• Fever

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Signs of approaching death (cont’d.):• Extreme weakness and exhaustion • Loss of muscle tone• Fallen jaw, causing the mouth to stay open• Decreased sense of touch• Loss of feeling, beginning in the legs and feet

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Signs of approaching death (cont’d.):• Loss of vision• Dilated pupils and staring eyes• Inability to speak• Extreme drowsiness• Disorientation or confusion

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Signs of approaching death (cont’d.):• Hallucinations• Low blood pressure• Increased pulse• Cheyne-Stokes breathing • Gurgling and rattling sound when breathing

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Signs of approaching death (cont’d.):• Difficulty swallowing• Decreased appetite and sense of thirst• Dry mouth• Nausea, vomiting, and diarrhea• Urinary and fecal incontinence

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Signs of approaching death (cont’d.):• Decreased urinary output• Loss of hearing

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Transparency 27-2: Signs of Approaching Death

• Cyanotic, pale, or darkening skin or mucous membranes• Cold skin• Skin that looks bruised (mottling)• Heavy perspiration• Fever• Extreme weakness and exhaustion • Loss of muscle tone• Fallen jaw, causing the mouth to stay open• Decreased sense of touch• Loss of feeling, beginning in the legs and feet• Loss of vision• Dilated pupils and staring eyes

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Transparency 27-2: Signs of Approaching Death (cont’d.)

• Inability to speak• Extreme drowsiness• Disorientation or confusion• Hallucinations• Low blood pressure• Increased pulse• Cheyne-Stokes breathing • Gurgling and rattling sound when breathing• Difficulty swallowing• Decreased appetite and sense of thirst• Dry mouth• Nausea, vomiting, and diarrhea• Urinary and fecal incontinence• Decreased urinary output• Loss of hearing

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9. List changes that may occur in the human body after death

Remember these points about the body after death:• No pulse, respiration, or blood pressure• Jaw drops• Eyelids partially open• Urinary and fecal incontinence• Fixed and dilated pupils

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Define the following term:rigor mortis

Latin for “stiffness of death;” refers to the stiffness that occurs after death due to muscles becoming rigid.

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These Latin terms describe changes in the body after death: • Algor mortis is the cooling of the body after death and the

decrease in elasticity of the skin. • Livor mortis is skin discoloration after death in the dependent

areas of the body, such as the feet and legs. • Rigor mortis is the stiffness that occurs after death due to a

biochemical change that causes muscles to become rigid.


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10. Describe ways to help family and friends deal with a resident’s death

Understand some of the feelings that family and friends may experience after a loved one dies:• Feeling numb or being in shock• Physical reactions or symptoms, such as pain, especially chest

pain, nausea, or difficulty breathing

• Feelings of guilt, especially if there were any unresolved problems or issues with the relationship

• Disbelief or denial of the death

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Feelings that family and friends may experience after a loved one dies (cont’d.):• Feelings of relief • Intense sadness and crying• Anxiety or fear• Anger

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REMEMBER:Family may direct anger at staff members. They may just be reacting to the loss of a loved one. They may blame staff for a problem that they feel was not addressed. Whatever the reason, refer any family complaints to the nurse. Do not try to calm a family member or friend who is upset with staff.

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Think about this question:Why is it important to allow the family and friends of someone who has died to express their feelings?

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Remember these guidelines to follow to help families and friends:• Be available. Listen when they want to talk.• Do not be afraid to show your feelings.• Do not make inappropriate comments or use clichés.• Report requests for spiritual leaders to the nurse.

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11. Describe ways to help staff members cope with a resident’s death

REMEMBER:You have a right to experience strong feelings when a resident dies. Being able to grieve is important. Do not underestimate your own feelings, and do not hesitate to seek out counseling or bereavement therapy if needed.

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11. Describe ways to help staff members cope with a resident’s death

Understand the ways that staff can cope with a resident’s death:• Express your feelings—they are normal.• Share memories.• Spend quality time with people you love.• Do things that make you happy.• Talk to a counselor.• Join a support group.• Take care of yourself.

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12. Describe postmortem care

Define the following terms:postmortem care

care of the body after death.autopsy

an examination of a body by a pathologist to try to determine the cause of death.

pathologista doctor with advanced training in the examination of organs and tissues.

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Before performing postmortem care, be sensitive to the needs of family and friends after death occurs. They may wish to stay with the body for a while. Allow them time to do so.

If an autopsy is going to be performed by a pathologist to determine the cause of death, the person may need to be transferred to another facility.

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REMEMBER:Be aware of religious or cultural practices that the family wants to observe.

Postmortem care

Equipment: two pairs of gloves, drainage pads, shroud kit or sheets, clean gown, toilet tissue, washcloth or wipes, wash basin of warm water, towel, plastic bags for clothing and belongings

1. Identify the resident.

2. Wash your hands.

3. Explain procedure to resident’s family and ask them to step outside. Be courteous, respectful, and compassionate at all times.

4. Provide for privacy with a curtain, screen, or door.

Postmortem care

5. Adjust bed to safe working level, usually waist high. Lock bed wheels.

6. Avoid trauma to the resident’s body throughout the procedure. Treat the body with the utmost respect.

7. Put on gloves.

8. Turn off any oxygen, suction, or other equipment, if directed by the nurse. Do not remove any tubes or other equipment. A nurse or the funeral home will perform these tasks.

Postmortem care

9. Gently close eyes without pressure.

10. Position the body in good alignment, on the back with legs straight. Fold arms across the abdomen. It is important to position the body before rigor mortis occurs, as it will make positioning difficult. The period from two to four hours after death is most common for the development of rigor mortis.

11. Close the mouth. Place rolled towel under the chin.

Postmortem care

12. Gently bathe the body. Be careful to avoid bruising. Replace any dressings only if directed to do so.

13. Comb or brush hair gently without tugging.

14. Place drainage pads where needed. Most often this is under the head and/or under the perineal area and buttocks.

15. Put a clean gown on the body.

Postmortem care

16. Cover body to just over the shoulders with sheet. Do not cover face or head.

17. Tidy room so family may visit.

18. Remove all used supplies and linen.

19. Follow your facility’s policy for handling or removing personal items. Always have a witness if personal items are removed or given to a family member.

20. Remove and discard gloves.

21. Wash your hands.

Postmortem care

22. Return bed to low position if raised. Turn lights down and allow family to enter and spend private time with resident.

23. Return after family departs and put on clean gloves.

24. Place shroud on resident and follow instructions on completing ID tags.

25. Remove and discard gloves.

Postmortem care

26. Wash your hands.

27. Report and record observations. Document procedure using facility guidelines.

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Think about these questions:What feelings do you have about providing postmortem care? Do you think you would have trouble touching a dead body?

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ExamMultiple Choice. Choose the correct answer.1. What does palliative care involve?(A) The resident’s recovery(B) Comfort and managing symptoms(C) Teaching the resident to care for himself(D) Curing the resident’s illness

2. When is hospice care usually ordered by a doctor?(A) When a diagnosis of a terminal illness is made(B) When the long-term care facility can no longer care for the resident(C) When the resident requests it(D) When a person has six months or less to live

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Exam (cont’d.)3. Ms. Fleming, a resident who has recently been diagnosed with terminal cancer, has accused the nursing assistants in her unit of taking poor care of her and causing her disease. What stage of grief is Ms. Fleming in?(A) Denial(B) Anger (C) Bargaining(D) Depression

4. Mr. Parker has always been cheerful and optimistic, but since his diagnosis of Alzheimer’s disease, he has been quiet and withdrawn. He does not seem to enjoy any of his favorite activities and rarely talks to anyone. Which stage of grief is Mr. Parker in?(A) Depression(B) Bargaining(C) Denial (D) Acceptance

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Exam (cont’d.)5. Mrs. Levine, a resident, prays about her terminal illness. She promises God that she will make peace with her sister, whom she has not seen in 20 years, if she is allowed to live. Which stage of grief is Mrs. Levine going through?(A) Denial(B) Anger(C) Bargaining(D) Acceptance

6. A terminally ill resident, John Castillo, visits with his family. He discusses his funeral arrangements with them. He lets them know that he is concerned about their well-being after he is gone. He says he wants to spend as much time as possible with them before he dies. Mr. Castillo is going through the ________ stage of grief.(A) Denial(B) Anger(C) Bargaining(D) Acceptance

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Exam (cont’d.)7. Which of the following is part of “The Dying Person’s Bill of Rights?” (A) I have the right to be told what to believe about life after death.(B) I have the right to be cared for by someone who will always tell me what she thinks I want to hear.(C) I have the right to have my questions answered honestly.(D) I have the right to be treated with forced cheerfulness.

8. Care guidelines for a dying resident include:(A) Residents will always be able to tell you when they are in pain(B) The room of a dying resident should be brightly lit(C) Residents should lie flat on their backs to ease problems with breathing(D) Residents should be fed slowly to help prevent choking and aspiration

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Exam (cont’d.)9. Which is the last sense to leave a person?(A) Sight (B) Hearing(C) Touch(D) Smell

10. One way for nursing assistants to help meet the psychosocial and spiritual needs of a dying resident is to:(A) Leave the resident alone as much as possible(B) Listen more, talk less(C) Share their religious beliefs with the resident(D) Tell the resident’s family things that the resident has told her about them

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Exam (cont’d.)11. Which of the following is a sign of approaching death?(A) Low blood pressure(B) Sharper vision(C) Warm, dry skin(D) Heightened sense of touch

12. One change that might occur in the body after death is:(A) The mouth closes(B) The body will not have a pulse, respiration, or blood pressure(C) The eyes close(D) The pupils constrict

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Exam (cont’d.)13. Nursing assistants can help a resident’s family and friends deal with the resident’s death by:(A) Trying to calm any family members or friends who are upset with staff(B) Asking them not to cry and reassuring them that they will get over it(C) Listening to them if they want to talk(D) Not showing any feelings for the resident who has died

14. Postmortem care is:(A) Examination of a body by a pathologist to try to determine the cause of death(B) Meeting the emotional needs of the resident’s family and friends (C) Grief counseling for staff after a resident’s death(D) Care of the body after death