1. 20 Dying, Death, and Hospice 1. Discuss the stages of grief Define the following terms: terminal illness a disease or condition that will eventually cause death. grief deep distress or sorrow over a loss.

2. 20 Dying, Death, and Hospice Transparency 20-1: Stages of Dying Denial Anger Bargaining Depression Acceptance

3. 20 Dying, Death, and Hospice 1. Discuss the stages of grief Understand Dr. Kubler-Ross’ five stages of dying (from the book 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

4. 20 Dying, Death, and Hospice 1. Discuss the stages of grief REMEMBER: Not every client goes through all these stages or in this order.

5. 20 Dying, Death, and Hospice 2. Describe the grief process Understand these seven common reactions to the death of a loved one: Shock - especially at one’s own feelings Denial- usually lasts a short time Anger - at themselves, God, the doctors, even at the person who died Guilt - wishing they had done more, guilty because they are still living Regret - for what they did or did not do Sadness - depression, headaches, or insomnia Loneliness - missing the person and painful memories

6. 20 Dying, Death, and Hospice 3. Discuss how feelings and attitudes about death differ Know the factors that influence feelings and attitudes about death: Experience with death Personality type Religious beliefs Cultural background

7. 20 Dying, Death, and Hospice 3. Discuss how feelings and attitudes about death differ Think about this question: What experiences have you had with death and what factors shape your response to death?

8. 20 Dying, Death, and Hospice 4. Discuss how to care for a dying client Know these guidelines for care of the dying client: Diminished senses Care of mouth and nose Skin care Comfort Environment Emotional and spiritual support

9. 20 Dying, Death, and Hospice 4. Discuss how to care for a dying client REMEMBER: By law, advance directives and DNR orders must be honored. Respect each client’s decisions about advance directives.

10. 20 Dying, Death, and Hospice 5. Describe ways to treat dying clients and their families with dignity and to honor their rights REMEMBER: You can treat clients with dignity when they are approaching death by respecting their rights and their individual preferences.

11. 20 Dying, Death, and Hospice 5. Describe ways to treat dying clients and their families with dignity and to honor their rights Think about this question: Which of the clients’ rights may apply in particular when a client is close to death?

12. 20 Dying, Death, and Hospice Transparency 20-2: Rights to Remember When Caring for the Terminally Ill The right to refuse treatment The right to have visitors of their own choosing The right to privacy

13. 20 Dying, Death, and Hospice Handout 20-1: 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.

14. 20 Dying, Death, and Hospice Handout 20-1: Dying Person’s Bill of Rights 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.)

15. 20 Dying, Death, and Hospice 5. Describe ways to treat dying clients and their families with dignity and to honor their rights Understand these rights of the dying person and consider the questions and statements that follow each right listed: 1. 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 clients 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.

16. 20 Dying, Death, and Hospice 5. Describe ways to treat dying clients and their families with dignity and to honor their rights Rights of the dying person (cont’d): 2. 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.

17. 20 Dying, Death, and Hospice 5. Describe ways to treat dying clients and their families with dignity and to honor their rights Rights of the dying person (cont’d): 3. The right to privacy. Privacy is a basic right, but why may privacy for visiting be even more important now?

18. 20 Dying, Death, and Hospice 5. Describe ways to treat dying clients and their families with dignity and to honor their rights REMEMBER: An important part of your job is treating the dying client with dignity and respect. It is important to do the same things that you do for other clients, such as explaining procedures, keeping the client covered during procedures, and refraining from talking about the client as though he or she were not there.

19. 20 Dying, Death, and Hospice 6. Define the goals of a hospice program Define the following terms: hospice holistic, compassionate care given to dying people and their families. palliative care care that focuses on the comfort and dignity of a person who is very sick and/or dying, rather than on curing him or her. respite care a type of care that provides a temporary break from tasks associated with caregiving.

20. 20 Dying, Death, and Hospice 6. Define the goals of a hospice program Understand the holistic approach that hospice care uses, and know these goals: Comfort of client Dignity of client

21. 20 Dying, Death, and Hospice 6. Define the goals of a hospice program Understand these priorities for the HHA in a hospice situation: Pain relief Comfort measures Personal care Emotional support Give client control Provide break for family Observe family for stress

22. 20 Dying, Death, and Hospice 6. Define the goals of a hospice program REMEMBER: The goals of hospice are meeting the client’s physical, emotional, social, and spiritual needs.

23. 20 Dying, Death, and Hospice 6. Define the goals of a hospice program Think about this question: Why is the focus of hospice care not on wellness or recovery?

24. 20 Dying, Death, and Hospice 7. Identify special skills and attitudes helpful in hospice work Remember these skills and attitudes needed in hospice work: Be a good listener. Respect privacy and independence. Be sensitive to individual needs. Be aware of your own feelings. Be sure to follow the plan of care.

25. 20 Dying, Death, and Hospice 7. Identify special skills and attitudes helpful in hospice work Think about this question: What things can you do to deal with your own feelings when doing hospice work?

26. 20 Dying, Death, and Hospice 8. Describe the role of the hospice volunteer Know these points about hospice volunteers: An estimated 458,000 volunteers provided care to over 1.5 million people in 2010. Volunteers have to be trained. Services include caring for the home or family, driving, doing errands, and providing emotional support.

27. 20 Dying, Death, and Hospice 8. Describe the role of the hospice volunteer Think about this question: Would you prefer to be a hospice volunteer or a hospice HHA? Why?

28. 20 Dying, Death, and Hospice 9. Discuss the importance of caring for yourself when working in hospice care Remember these ways to care for yourself: Recognize stress - talk to a friend. Take care of yourself- eat right, exercise, and rest. Take a break - don’t feel guilty.

29. 20 Dying, Death, and Hospice 10. Explain common signs of approaching death Define the following terms: Cheyne-Stokes alternating periods of slow, irregular respirations and rapid, shallow respirations. rigor mortis the Latin term for the temporary condition after death in which the muscles in the body become stiff and rigid.

30. 20 Dying, Death, and Hospice Transparency 20-3: Signs of Approaching Death Blurred and failing vision Unfocused eyes Impaired speech Diminished sense of touch Loss of movement, muscle tone, and feeling Rising body temperature or below-normal temperature Decreasing blood pressure Weak pulse that is abnormally slow or rapid Slow, irregular respirations or rapid, shallow respirations (Cheyne- Stokes) Rattling or gurgling sound when breathing Cold, pale skin Mottling, spotting, or blotching of skin Perspiration Incontinence Disorientation or confusion

31. 20 Dying, Death, and Hospice 11. Describe postmortem care Define the following terms: postmortem care care of the body after death. perineum the genital and anal area.

32. 20 Dying, Death, and Hospice 11. Describe postmortem care Know these postmortem care guidelines: Rigor mortis may make body difficult to move. Talk to the supervisor if help is needed. Bathe the body gently and place drainage pads where needed. Check with family for how to dress client and whether or not to remove jewelry. Do not remove tubes or other equipment. Put in dentures if instructed by supervisor. Close eyes.

33. 20 Dying, Death, and Hospice 11. Describe postmortem care Postmortem care guidelines (cont’d): Position body. Put a small pillow under head. Strip the bed after body is gone. Open windows to air the room. Straighten room. Arrange personal items carefully. Document procedure.

34. 20 Dying, Death, and Hospice 11. Describe postmortem care Think about these questions: Do you think you would have a problem touching a dead body? What feelings do you have about postmortem care?

35. 20 Dying, Death, and Hospice 11. Describe postmortem care REMEMBER: It is important to ask the family members of a client who has died what the you can to do help. As an HHA, you may answer the phone, make coffee or a meal, supervise children, or keep family members company.

36. 20 Dying, Death, and Hospice 12. Understand and respect different postmortem practices REMEMBER: There is no one or “right” way to grieve. You will see many different responses to a loved one’s death, and your job is to respond professionally. Postmortem practices that the family and/or others perform must be respected.

37. 20 Dying, Death, and Hospice 12. Understand and respect different postmortem practices REMEMBER: You need to check with your supervisor before attending a client’s funeral to make sure it’s acceptable to do so.

38. 20 Dying, Death, and Hospice 12. Understand and respect different postmortem practices Understand these different types of postmortem practices: Wakes Viewings Open Caskets Closed Caskets Cremations

39. 20 Dying, Death, and Hospice 12. Understand and respect different postmortem practices REMEMEBER: When a client has died, whether the client was religious or non- religious, your job is to respect the family’s customs and choices.

40. 20 Dying, Death, and Hospice 12. Understand and respect different postmortem practices Think about this question: Can you describe some of the funerals you have attended, and how they have differed?

41. 20 Dying, Death, and Hospice Exam Multiple Choice. Choose the correct answer. 1. Which of the following is an example of a client who is going through the bargaining stage of the grief process, according to Dr. Kubler-Ross? (A) The client makes a new will and tells her family about funeral arrangements. (B) The client insists that a mistake was made on her blood tests. (C) The client tells her sister that if she lives, she will start volunteering every day at the senior center. (D) The client feels sad most of the time and does not want to see anyone. 2. A terminally ill client discussed funeral arrangements with his family. 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. Which stage of dying is this client in? (A) Denial (B) Anger (C) Bargaining (D) Acceptance

42. 20 Dying, Death, and Hospice Exam (cont’d) 3. Which of the following statements is true of the grief process? (A) A family member may be shocked after the death of a loved one, even if she was aware that the person was dying. (B) All people grieve in the same way, following the same process. (C) Missing a person who has died is an uncommon response to death. (D) Feeling angry after a person has died is unhealthy and unnatural. 4. One factor that influences personal attitudes about death is (A) A person’s diet (B) A person’s culture (C) A person’s weight (D) A person’s height

43. 20 Dying, Death, and Hospice Exam (cont’d) 5. When caring for a dying client’s diminished senses, an HHA should (A) Ask many questions to see what is comfortable for the client (B) Turn on as many lights as possible (C) Observe body language (D) Encourage all visitors to remain silent 6. The last sense to leave the body is usually the sense of (A) Hearing (B) Sight (C) Taste (D) Touch

44. 20 Dying, Death, and Hospice Exam (cont’d) 7. How can HHAs give emotional support to clients who are dying? (A) By leaving dying clients alone as much as possible (B) By listening more (C) By sharing their religious beliefs with clients (D) By telling clients that it will all be over soon 8. One way that HHAs can respect the rights of clients who are dying is to (A) Keep visitors away from clients (B) Let the family know if the HHA does not agree with clients’ medical decisions (C) Promise clients that they will get better (D) Promote privacy for clients

45. 20 Dying, Death, and Hospice Exam (cont’d) 9. 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. 10. Which of the following is true of advance directives? (A) Advance directives must be honored as long as family members agree with the client’s decisions. (B) Advance directives must be honored unless HHAs do not agree with the diagnosis. (C) Advance directives must be honored. (D) Advance directives should be changed when the client’s spiritual leader does not agree with the client’s decision.

46. 20 Dying, Death, and Hospice Exam (cont’d) 11. What does palliative care involve? (A) The client’s recovery (B) Pain relief and comfort (C) Teaching the client to care for himself (D) Curing the client’s illness 12. An attitude that is helpful in hospice work is (A) Being sensitive to individual needs (B) Pushing clients to talk about their feelings (C) Joining in the conversation during personal visits (D)Helping the client embrace the HHA’s faith before death

47. 20 Dying, Death, and Hospice Exam (cont’d) 13. Which of the following is a sign of approaching death? (A) Decreasing blood pressure (B) Sharper vision (C) Warm, dry skin (D) Heightened sense of touch 14. The HHA’s responsibilities regarding postmortem care include (A) Placing drainage pads where needed (B) Removing tubes from the dead client (C) Removing equipment from the room (D) Examining the body to help determine the cause of death

48. 20 Dying, Death, and Hospice Exam (cont’d) 15. Which of the following statements is true? (A) Most people respond in a vocal and emotional way after a loved one has died. (B) Dealing with the death of a loved one will take approximately two months. (C) HHAs may grieve for clients after they die. (D) HHAs will be expected to attend clients’ funerals. 16. Burning of a body until it is reduced to ashes is called (A) Burial (B) Cremation (C) Memorial (D) Eulogy

49. 20 Dying, Death, and Hospice Exam (cont’d) 17. When a dead person’s body is displayed at a funeral service, it is called a(n) ___________ funeral. (A) Closed casket (B) Visible body (C) Open casket (D) Urn displayed 18. A watch over a dead body before burial that often involves singing, eating, drinking, and storytelling is called a (A) Viewing (B) Wake (C) Burial (D) Eulogy