1. Leo G. Rafail, BSW Community Liaison President Thomas Cellini Huntington’s Foundation Board Trustee Rock Steady Boxing Former Care Services Program Manager The ALS Association Indiana Chapter Thomas Cellini Huntington’s Foundation

2. Caring for Patients at the End of Life

3. The Nurse’s Role Caring for a dying patient is a complex role for a nurse. Some nurses are better prepared for this role, others are not. In order to effectively care for this type of patient, nurses need to shift from saving life to preparing for death.

4. Advocacy Pain and symptom management Culturally sensitive practices Assisting patients and their families through the death and dying process Ethical decision making

5. Palliative Care A patient is seeking comfort measures They are not seeking curative treatments Palliative Care Includes: RadiationAntibiotics Blood TransfusionsSome Chemo IV FluidsSome Surgeries

6. When Do We Start? Preparing for death and grief counseling starts on admission!

7. Patient’s Right to Information How much should we tell them? Are they competent to understand?

8. Recognize the Symptoms Increased Pulse Decreased Blood Pressure Increased Respirations-Irregular Respirations Temperature Decrease output Cooling of extremities-Mottling “Death Rattle”

9. EOL Interventions Roxanol Ativan Atropine Tylenol

10. Types of Loss Loss of a loved one Loss of a pet Loss of a job Loss of a limb Loss of independence Loss of material possessions **LOSS OF MEMORY**

11. Types of Grief Normal Delayed Anticipatory Chronic

12. Grief Theories Kubler-Ross 5 stages: Denial, Anger, Bargaining, Depression, Acceptance Multi-Dimensional: Emotional, Social, Physical, Lifestyle, Practical, Spiritual, Identity Rando’s 6R Model: Recognize, React, Recollect, Relinquish, Readjust, Reinvent

13. Develop Care Plan Need to Know:What type of loss What type of grief History of Loss

14. Signs / Symptoms of Grief Physical Crying Headaches Loss of appetite Difficulty sleeping Weakness Fatigue Emotional Sadness Worry Anxiety Frustration Anger Guilt

15. Signs / Symptoms Continued Social Feeling of detachment Isolation Behaving in ways society considers “abnormal” Spiritual Questioning the reason for loss Questioning one’s purpose Questioning the meaning of life / death Wishing ill on others

16. 5 Things to Say Forgive Me I Forgive you Thank you I Love you Goodbye

17. Hospice Criteria End of Life Diagnosis Death will result in 6 months if disease run it’s normal course, must be certified by 2 physicians Seeking palliative care, not curative

18. What do we want to do? Keep the patient comfortable Keep the family calm-providing support and information Treat patient, family and other caregivers with kindness, compassion and respect DOCUMENT, DOCUMENT, DOCUMENT!!!!

19. What Happens After Death What is in, will come out Clean the body Cover, leaving arms and hands out Don’t worry about closing mouth, chances are, you can’t Give family time alone with loved one Stay with the body until the funeral home arrives

20. If there is any question to the cause or manner of death, simply cover the body and wait for the coroner. Do not clean the body, do not remove catheters, do not remove IV’s or PICC’s.

21. A Nurse’s Loss Personal grief experience Feeling of loss Feeling incompetent Scared Guilty Care for Self Talk to team Ask for help Have other team members present for support Attend Memorial Service Do things “In Memory Of”

22. Ethical Issues Who’s in charge What’s best for the patient Who steps in when a decision can’t be reached To sustain life or allow natural death

23. Thanks to Amy Adams, PhD for creating this presentation QUESTIONS?