When the Focus of Care Changes…

1. When the Focus of Care Changes… Circle of Life Community Coalition End of Life Toolkit Ministry Home Care Hospice and Wood County Aging and Disability Resource Center

2. Agenda Understanding palliative care and hospice care Identifying who is dying What the dying want Signs and symptoms of nearing death. Circle of Life Community Coalition End of Life Toolkit

3. Traditional Model Curative or Life- Prolonging Treatment Palliative (death) Circle of Life Community Coalition End of Life Toolkit

4. Palliative Care • Palliative care is holistic care focused on symptom management of individuals and their families • The symptoms may be physical, spiritual, emotional • Services are not limited to the terminally ill • Is utilized in conjunction with curative therapies Circle of Life Community Coalition End of Life Toolkit

5. Definition: Palliative Care “Palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness through the prevention and relief of suffering by means of early identification, impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.” World Health Organization 2002 • It can be offered simultaneously with all other appropriate medical treatment. Circle of Life Community Coalition End of Life Toolkit

6. Hospice care • Supportive holistic comfort care for individuals (and their families) in the last six months of life • Interdisciplinary team provides services where the person resides. • Coordination of services across all settings • Services includes coordination of all medications, supplies and equipment • Bereavement care extends 13 months after the time of death Circle of Life Community Coalition End of Life Toolkit

7. Integrated Model Curative or Life-prolonging Bereavement Spiritual / Existential Death Life Closure Family Issues Palliative Care Hospice Program Symptom Control Circle of Life Community Coalition End of Life Toolkit

8. Palliative care is symptom management in both curative and non-curative medical care • Hospice care is a form of palliative care • Palliative care is not just for the dying Circle of Life Community Coalition End of Life Toolkit

9. Identifying those who are dying • Death and Dying Critical Indicator Checklist • Common Indicators for End-Stage Disease • Flacker Mortality Score Circle of Life Community Coalition End of Life Toolkit

10. The needs of the dyingare different from thosewho are expected to recover. Circle of Life Community Coalition End of Life Toolkit

11. When people are dying they want… • To be kept clean • To name a decision maker • To have someone who will listen to their fears • To have financial affairs in order, including funeral arrangements • To be free from pain, difficult breathing, and anxiety • To maintain mental awareness • To not be a burden on family or society • To discuss what to expect as they are dying Circle of Life Community Coalition End of Life Toolkit

12. Caregivers also want to know what to expect when someone is dying.What happens?What does it look like? Circle of Life Community Coalition End of Life Toolkit

13. Although each person is unique, there are common signs and symptoms of approaching death. Circle of Life Community Coalition End of Life Toolkit

14. Physical Signs • Increasing pain • Increasing weakness • Decreasing appetite • Restlessness and/or confusion • Sleeping more of the time • Increase of shortness of breath Circle of Life Community Coalition End of Life Toolkit

15. Spiritual and Emotional Signs • Withdrawal from society, friends, family; more inwardly focused • Increased fears, including fear of being left alone • Increased awareness of spiritual and/or religious issues Circle of Life Community Coalition End of Life Toolkit

16. There may be some more unusual and puzzling signs… • Moments of clear thinking and speaking • Sudden increased energy • Statements about “going home” or “packing bags” • Speaking about or to people who have already died • Saying goodbye to family and friends Circle of Life Community Coalition End of Life Toolkit

17. One to two weeks before death the person may exhibit … • Disorientation/confusion/agitation • Visual or auditory hallucinations • Picking at clothing or the air • Change in skin color • Change in breathing pattern • Increase in respiratory congestion • Not eating, taking less fluids • Swelling of arms or legs • Less urine output Circle of Life Community Coalition End of Life Toolkit

18. In the last hours before death… • Changes in breathing patterns • Unable to be awakened • Discoloration or “mottling” of knees, feet, hands - sometimes more generalized • Coolness of arms, hands, feet, legs Circle of Life Community Coalition End of Life Toolkit

19. Evidence of death • No breathing • No heartbeat • Unable to be aroused • Eyes open slightly but not moving or blinking • Mouth falls open as jaw muscles relax • Skin color changes to grey or mottled Circle of Life Community Coalition End of Life Toolkit

20. "You matter because you are you, and we will not only enable you to die with dignity, but to live until you die." • Dame Cicely Saunders • -Founder of modern day hospice and palliative care Circle of Life Community Coalition End of Life Toolkit