Home Care Chronic Disease Prevention Program

1. Home Care Chronic DiseasePrevention Program Melanie S. Bunn RN,MS A collaboration of Duke University, Division of Community Health and University of South Carolina, School of Medicine

2. Homework review • What did you do? • What happened as you did that? • Why do you think that happened? • Here’s what might have happened. • How does this impact the next time you try this?

3. Chronic Disease Management Module 1:Health/Illness, Vital Signs, Exercise, Nutrition Module 2: Motivational Interviewing Module 3: End of Life Module 4: Heart Attack Module 5: COPD Module 6: Stroke Module 7: Hypertension Module 8: Diabetes Module 9: Congestive Heart Failure

4. Module 3: End of life care (family, faith, relationships)

5. Objectives • Discuss the impact of caring for people at the end of life on nursing assistants and individual responses to end of life issues • Define advanced directives • Describe common end of life scenarios • Demonstrate strategies for providing comfort care to people at the end of life

6. Common Feelings About End of Life and Death • Fear of the unknown • Fear of our own death • Fear of failure • But…

7. Death is natural—as much a part of the life cycle as birth is. So, death is not: • Evil—to be feared, • Bad—to be avoided, or • Failure—to be ashamed of.

8. Unfortunately • Too many people die • Alone • In Pain • Gasping for breath • Their families and loved ones are alone with unanswered questions and unsupported in their grief.

9. Three Common End of Life Patterns • Unexpected death • Expected death • Lingering death (Institute of Medicine 1997)

10. Leading Causes of Death in Americans 65 and Older Cause of death Percentage • Heart disease 44% • Cancer 29% • Stroke 11% • COPD 8% • Influenza and pneumonia 4% • Diabetes 4% (Federal Forum on Aging-Related Statistics, 2000)

11. Location of Death - In NC: • 54% of deaths occur in a hospital Some of these people were transferred from a nursing home • 22% die in a nursing home • 25% die at home (Hanson,2004)

12. Most people die from chronic disease(Not acute illnesses) In health care environments(Not at home)While being cared for by health care professionals(Not family or friends)

13. Choices and Decisions • Ultimately, the individual is in charge. • Speaking for him/herself if able • Speaking through others

14. End of life decisions are more than what you don’t want…They includewhat you do want. • WHO? • Best situation: • Health care power of attorney • Other situation: • Often, closest family member • Sometimes, court appointed guardian • WHAT? • Best situation: • Person has expressed wishes clearly in spoken and written words • Worst situation: • No guidance in how the person would choose

15. Advance directives Tell your health care team what kind of care you would like to have if you become unable to make medical decisions Describe the treatment you would like to have depending on how sick you are Vary according to state

16. Types of advance directives Living Will Power of Attorney Do Not Resuscitate order

17. Living will • Takes effect when you are terminally ill and not able to make decisions • Describes treatments you would want • Does not name someone to make decisions for you

18. Power of attorney • Durable power of attorney for health care • States who you chose to make decisions for you if you are no longer able to do so • Legal document

19. Do not resuscitate order States that you do not wish to have cardio- pulmonary resuscitation if your heart stops and you stop breathing Medical document

20. Who needs these Persons who are ill Persons who are not ill but have co- morbidities All persons should discuss with their families even when in good health Anyone who might one day be sick or injured Your clients You

21. Decisional patient The patient who can make decisions for themselves has the ability to: Understand Evaluate Communicate

22. How to write advanced directives Use a form provided by your doctor, that comes from the state Call your department of health Use a lawyer Write on a piece of paper

23. What to do next Review with your family and doctor Notarize Provide copies to your doctor and family

24. Advanced directives Can be changed at any time as long as the patient is decisional

25. Practice session Choose a partner Practice discussing advanced directives with them as though they were your client

26. Practice session Describe types of advanced directives Define the decisional patient Does your client have advanced directives? Are they in writing? How is the family involved? Do you as the nurse aide know where they are kept?

27. Care Approaches • Approaches to care can range from: • “Do everything to keep me alive” to • “Do everything to keep me comfortable.”

28. Palliative • Comfort Care • TOP PRIORITIES – • Improving quality of life (not treating disease processes) • Honoring personal preferences and choices • Managing pain, distress, anxiety, fear, discomfort • Identifying & meeting social, physical, psychological, and spiritual needs • Letting go of FIXING and MOVING ON to Comforting

29. What does this Mean? • Reduce or stop monitoring – if there is not a ‘treatment’ that will be pursued • Provide what the person wants or needs NOT what is ‘best’ for them • Provide comfort – • Assess for and manage pain, discomfort, or distress • Give permission to GO….

30. What Does This Mean? Don’t… Don’t treat infections, IF… Don’t force INTAKE Don’t push fluids or put in IVs Don’t force movement Don’t just ‘DO CARE’ – and leave alone Don’t force interaction • Try… • Treat the discomfort of infections… • Offer tastes, textures • Offer fluids – decide about thickened… • Use touch, massage, controlled repositioning • Be present, balance offerings of silence & space with communication & contact

31. A New Attitude • Not absence of care • Instead, very good, but at different type, of care

32. Hospice • A system of providing care to the terminally ill and their caregivers

33. Signs that it may be time… Repeated infections Antibiotics seem ineffective Refusals to eat – even favorite items Holding food in mouth – spitting it out Soft coughs – wet voice Stop moving – curling up Sleeping a lot Lots of low grade fevers Primitive reflexes show up Withdrawal from those around – closing eyes Drifting in and out Says ‘good-bye’ Talks about ‘going home’ Asks permission to go Albumin drops very low Wounds won’t heal Can’t keep weight on Skin and bones Moaning – not actively communicating

34. Sudden “waking up” Restlessness Withdrawal Not eating or drinking Sleeping Loss of interest Loss of eye contact Opening eyes Saying goodbye Signs that it may be time… • Changes in VS • Extremities getting cool and changing in color • Changes in breathing patterns • Short times without breathing • Rattling breaths • Open mouth • Decreased urine output • Loss of bowel

35. Changes Near the End Primitive reflexes become strong Flexor tone pre-dominates – can’t move out Temperature control is broken Skin & bones – not hungry or thirsty Spends more time drowsy or ‘inside’ Infections are common Startles easily – harder to calm Pain – stiffness, immobility, dry mouth/skin Sometimes people will start saying good bye-either clearly or vaguely

36. These symptoms might also be signs of… health problems or depression

37. Roles at the End of Life • Observe for symptoms and changes • Report • Provide care to help with management of symptoms and improve quality of life

38. Common Care Issues Associated with the End of Life CAUSE OF SYMPTOMS: • Underlying disease process • Associated symptoms • Treatment affects • End of life body processes • Other health issues

39. Common End of Life Care Issues • Nutrition and hydration • Constipation • Pain • Nausea • Anxiety • Confusion • Skin problems

40. Reasons we still want to use treatments…

41. These reasons are about OUR needs, not our patient’s needs.One of the greatest end of life gifts is respecting spoken and implied wishes.

42. Goals of Symptom Management Step 1: Anticipate and prevent symptoms Step 2: Identify early signs of symptoms Step 3: Treat quickly and effectively to eliminate or reduce symptoms Step 4: Provide comfort while treatments are working or to help cope with unmanageable symptoms

43. THE REAL PROBLEM • We do too many of the “wrong” things • And not enough of the right things

44. The right things • Individualized comfort care • Management of pain and other symptoms • Emotional and spiritual support • Dying at home—wherever home may be

45. THE MOMENT OF DEATH Death occurs: • The person is no longer breathing. • The heart isn’t beating. • Sometimes the person will breathe out a long sigh and be gone. • Often the bowels and bladder will release. • Sometimes reflexes will cause movement and twitching.

46. Thing you can do and help families do. • Give the person permission to rest • Say, “It’s ok for you to go” • Support the family in saying goodbye and reassuring the person they will be ok.

47. Some specifics • Warmer Temperature – • Warm room • Sunlight • Warmed, light-weight blankets • Foot and hand warmers – bean/rice socks • Head covers • Rub hands or run warm water over them before touching the person • Warm lotion & cloths for cleaning, warm towels for drying

48. Some specifics • Positioning – • Reclining chairs that are comfortable and support the hip angle • Shifting position smoothly and slowly to allow circulation • Gentle & slow rotational movements to relax muscles that can not relax on their own

49. Some specifics • Your Touch • Flats of fingers • Contact over joints, first • Still pressure first • Slow movement • Slow, rhythmic, circular motions • Massage – hands, feet, temples, jaw, back, hips, shoulders • Hand clasp – hand-under-hand, sandwich

50. Some specifics • Their Touch • Be aware of grasp reflex – plan for it • Be aware of hand-to-mouth – plan for it • Offer various textures to hold, touch, handle • Offer familiar objects that can be explored & handled • A stuffed animal or doll to cuddle & nurture • Warm objects or cloth – (use a heating pad to warm)- or use a near-by clothes dryer