1. Bellringer: Yesterday, we dealt with our own feelings about death & dying. Today, we will talk about the emotional changes of a patient through the process. How do YOUR beliefs about death/dying affect the care that you give a patient through the dying process?

2. Emotional Changes of a patient through end of life care Jackilyn Malone, RN, BSN Montgomery County ATC

3. Death Cessation of heart & lung function OR Cessation of whole brain function

4. Terminal Illness A disease that cannot be cured and will result in death Time frame?? ◦ Days, ◦ Months ◦ Years

5. Reactions to Diagnosis Helplessness Fear ◦ Pain, separation from family, unknown Anxiety Loss of independence/control Unprepared/unfinished

6. Five Stages Elizabeth Kubler-Ross ◦ Psychiatrist ◦ Encouraged hospice care ◦ 1969— “On Death & Dying” ◦ Believed there are five stages of grief in the dying process ◦ Not necessarily linear

7. 1. Denial 2. Anger 3. Bargaining 4. Depression 5. Acceptance DABDA

8. Stage 1: Denial Usually the first stage when newly diagnosed Initial reaction of shock Dazed at first, then refusal to believe May seek second, third, fourth medical opinion “This can’t be happening.” “Must be some mistake”

9. Stage 1: Denial Tips for the Health Care Provider (HCP) ◦ Listen to the patient without confirming or denying the diagnosis

10. Stage 2: Anger No longer denies death Frustrated, angry, irritable, bitter May blame self and/or others, God “Why me?” Bad habits may begin ◦ Drinking, smoking, speeding  “Why follow rules and take care of myself if I’m going to die?”

11. Stage 2: Anger Tips for the HCP: ◦ Understand that displaced anger is not a personal attack. ◦ Try to be understanding

12. Stage 3: Bargaining Usually occurs when patient accepts death but wants more time to live Turns to religions, bargains with God “If you let me live long enough to see my grandson graduate college, I’ll donate everything I have to charity.”

13. Stage 3: Bargaining Tips for HCP ◦ Just listen

14. Stage 4: Depression Occurs when patient realizes death is coming and they no longer have control Clinical s/s: ◦ Withdrawal ◦ Sleep changes ◦ Hopelessness/crying ◦ Decreased appetite ◦ Possible suicidal ideation

15. Stage 4: Depression Tips for the HCP ◦ Depression is okay and normal ◦ Listen ◦ Use comforting touch ◦ Offer encouragement

16. Stage 5: Acceptance Normally, this is the final stage Realizes death is inevitable and accepts it May be able to talk about death, tries to comfort family & friends If religious, may be comforted by beliefs of afterlife May complete unfinished business ◦ Make amends, pay off loans

17. Stage 5: Acceptance Tips for HCP ◦ Listen ◦ Encourage

19. Five Stages Not always linear Can jump back and forth, skip stages May or may not go through all five One stage may be more intense than others Every patient will be different

20. Tips for HCPs LISTEN Talk as needed Provide religious support as requested Support family Identify appropriate resources Avoid statements such as: “It’s God’s will,” “Everything happens for a reason,” “Everything will be ok”

21. Activity I will divide students into groups with sticks I will give each group a packet of scenarios Read through the scenarios and then decide what stage of grief the patient is in. The first one, we will do together as a class

22. Break time Take a 5 minute break ◦ Get water ◦ Use restroom ◦ Stretch legs

23. Death Anxiety Patients experience some degree of anxiety when dying Different for each patient

24. Managing Death Anxiety Spirituality/Religion ◦ Solely up to patient ◦ HCP can ask the patient if they want clergy but must respect their wishes regardless ◦ Encourage them in their wishes and pursuits

25. Managing Death Anxiety Creative Outlets ◦ Art ◦ Music ◦ Scrapbooks ◦ Writing ◦ Videos ◦ Quilts

26. Managing Death Anxiety Many people are now making videos for their loved ones ◦ Gives them a chance to say what they want to say about life’s milestones ◦ http://www.cnn.com/2013/12/22/us/iowa-wife- dying-wish/ http://www.cnn.com/2013/12/22/us/iowa-wife- dying-wish/

27. Traits for HCP to show Concern ◦ Empathy, compassion, involvement Competence-skill & knowledge = reassurance Communication-know when to listen and when to talk Cohesion-family & medical personnel on same page

28. Traits for HCP to show Cheerfulness-gentle, not obnoxious; light humor okay if a regular part of rapport with patient Consistency

29. A Dying Patient’s Bill of Last Rights The Right to be in control. ◦ Grant me the right to make as many decisions as possible regarding my care. Please do not take choices from me. Let me make my own decisions

30. A Dying Patient’s Bill of Last Rights The right to have a sense of purpose. ◦ I have lost my job. I can no longer fulfill my role in my family. Please help me find some sense of purpose in my last days

31. A Dying Patient’s Bill of Last Rights The right to reminisce ◦ There has been pleasure in my life, moments of pride, moments of love. Please give me some time to recollect those moments. And please listen to my recollections.

32. A Dying Patient’s Bill of Last Rights The right to be angry and sad ◦ It is difficult to leave behind all my attachments and all that I love. Please allow me the opportunity to be angry and sad.

33. A Dying Patient’s Bill of Last Rights The right to hear the truth. ◦ If you withhold the truth from me, you treat me as if I am no longer living. I am still living, and I need to know the truth about my life. Please help me find that truth.

34. A Dying Patient’s Bill of Last Rights The right to be in denial. ◦ If I hear the truth and choose not to accept it, that is my right.

35. A Dying Patient’s Bill of Last Rights The right to have respected spirituality ◦ Whether I am questioning or affirming, doubting or praising, I sometimes need you ear, a non-judging ear. Please let my spirit travel its own journey, without judging its direction.

36. A Dying Patient’s Bill of Last Rights The Right to touch and be touched ◦ Sometimes I need distance. Yet sometimes I have a strong need to be close. When I want to reach out, please come to me and hold me as I hold you.

37. A Dying Patient’s Bill of Last Rights The Right to Laugh ◦ People often—far too often– come to me wearing masks of seriousness. Although I am dying, I still need to laugh. Please laugh with me and help others to laugh as well.

38. A Dying Patient’s Bill of Last Rights Honor these rights. One day you, too, will want the same rights.

39. Exit slip What character trait do you possess that you feel will help a dying patient?