A Caring Partnership with Hospice and Palliative Care

1. A Caring Partnership with Hospice and Palliative Care Cathy Allen, RN,BSN, Director

2. What is Hospice • Hospiceis designed to provide comfort and support to the patient, their family and caregivers to achieve the highest quality of life possible and make the most of each day. • Hospice care is intended for those with 6 months or less to live if the disease runs its normal course. • Hospice care can be given where ever the patient calls home. A medical team will visit this patient multiple times a week to ensure all their needs are met both physically and spiritually.

3. Hospice Myths Busted • Patient must be within last few days/hours of death • Hospice pays for everything • Patients have to go off all of their medications

4. Who drives the bus? Your Personal Medical Team will consist of: • Physician • Registered Nurse • Certified Hospice Aide • Social Worker • Volunteers • Chaplain • Interdisciplinary Team • Patient, Family and Caregivers

5. Finding your Hospice Partner RECOMMEND VISITING WITHSEVERAL PROVIDERS BEFORE MAKING YOUR DECISION. ASK SPECIFIC QUESTIONS LIKE… • Communication Amongst the Team and Family • How often will the medical team visit? • What services will they provide? • Who provides DME? • Pharmacy costs and who orders the medications? • How long can I remain on Hospice? • Can I go to the Emergency Room or Hospital? • Chaplain and Spiritual Needs?

6. Patient Choice • WE ALL HAVE A CHOICE! • You Should be able to Pick Your Provider of Choice and should not be mandated by a Facility or a Physician. They can make recommendations but again the patient and the family have the right of choice. • The Medical team takes this journey with the patient, their family and will continue to be their side the entire journey. Bereavement and Grief services will continue for 13 months to the family following the passing of their loved one.

7. Palliative Care • Palliative care (pronounced pal-lee-uh-tiv) is specialized medical care for patients with serious illnesses. It focuses on providing patients with relief from the symptoms, pain, and stress of a serious illness—whatever the diagnosis. The goal is to improve quality of life for both the patient and the family. • The goal is to improve quality of life for both the patient and the family.

9. Social Work and Hospice view the Client from a Biopsychosocial Perspective.

10. Biological Considerations Loss of Function: Inability to do what we were able to do in the past. • Physically • Socially • Psychologically • Educating caregivers about the evolving needs of the patient

11. Exploring the Illness Life Sustaining Treatment: • Patient and Family Values • Religious and Cultural Considerations regarding terminal condition/dying process • Exploring Advanced Directives • Do Not Resuscitate • Realistic expectations

12. Normalization of the Dying Process

13. Psychological Considerations • Understanding Palliative Care/Hospice Philosophy • We are more than a physical body • Treating the “Whole” person • Asking difficult questions and exploring difficult issues when the patient/family are ready “What does it feel like to be terminally ill?”

14. Patient/Family/Unit of Care • Validate Needs/Feelings/Beliefs • Meet patient and family where they are in the acceptance process • Empowering decision making based on personal ideas and beliefs • Understanding Family Dynamics

15. Effective Coping

16. Encourage Healthy Coping • Support Groups • Seeking Healthy Social Support • Exercise • Prayer/Meditation/Yoga • Visualization • Aromatherapy • Psychotherapy • Healthy Eating • Healthy Distraction

17. Beware of Unhealthy Coping • Over Eating/Unhealthy Eating • Substance Abuse • Over Work • Evaluate for Depression • History of Depression or Mental Illness? • Unhealthy Distraction

18. What Might be Next? • Exploring ideas about afterlife • What if there isn’t anything after this? • What if I haven’t been good enough? • What will my family do without me? • Finding Meaning and Purpose in one’s life • Healing the Past/Unloading our Baggage

19. Social Considerations • Who is available to provide for your care? • What is your plan if you need total care? • Hospice in Long-Term Care Settings Evaluation for appropriate community resource referrals. • support groups • connection to appropriate spiritual supports • state programs • Heartline 211

20. Valuing Diversity As caregivers, we must encourage our clients to explore their own belief system Value and Respect the Differences! • Ethnic • Faith • Economic • Cultural

21. Cultural Diversity

22. Volunteerism

23. Volunteerism -Socialization -Life Review -Pet Therapy -Clerical Duties

24. Do Good! “Do all the good you can. By all the means you can. In all the ways you can. In all the places you can. At all the times you can. To all the people you can. As long as ever you can.” John Wesley

25. Guidelines for Spiritual Care in Hospice Interdisciplinary Team Spiritual Care

26. What is a Hospice Chaplain? A part of the overall hospice team, a hospice chaplain gives pastoral support to terminally ill patients and their families. Patients can go into hospice care when they are expected to die within six months. The chaplain is a vital member of the hospice team. Although he gives no medical care, he is trained to listen well and to be a comforting and supporting presence in a difficult time.

27. Spiritual care in hospice is essentially a shared responsibility among the various disciplines. It is “shared” because hospice itself is essentially spiritual in nature, and as “spiritual”, it celebrates the diversity of people and disciplines that bring it to be. Guidelines: Provision of spiritual care requires working relationships of collaboration and mutual respect between chaplains and those in other disciplines.

28. The Hospice Chaplain The Hospice Chaplain meets these spiritual care responsibilities in the context of community, which includes each person touched by the death of the hospice patient. • The Patient • The Family • The Staff Caregivers • Friends • Nursing Facility Staff

29. Some Chaplain Roles Perhaps the following Chaplain job description will be useful in defining the role of hospice chaplain when meeting the spiritual care needs of patients facing end of life. Serve as a member of one or more Interdisciplinary Team (IDT) and attend meetings.

30. The Hospice Chaplin Complete spiritual assessment for patients admitted to Hospice care within five days of admission of the new patient.

31. The Hospice Chaplin Work with staff, clergy and community groups to enhance their sensitivity to the spiritual concerns of patients/families experiencing terminal illness or loss.

32. Participate in patient care conferences by exploring and assessing the spiritual needs of patients/families.

33. Maintain contact with community clergy regarding patients’ spiritual needs as needed.

34. Manage the provision of bereavement services in accordance with hospice policies and Federal Hospice and State Hospice regulatory requirements. • Contact the family as soon after death as possible to give condolences and a Bereavement Plan of Care must be completed as soon as possible after the death of a loved one. • Depending upon the Risk factor, the POC should provide help to the individual or family for a minimum of 13 months after death. • This should include: • Calls • Visits • Cards • Letters • Memorial Services

35. Maintain proper documentation of pastoral care visits to patients and their families.

36. Perform occasional liturgical assignments such as the Service of Remembrance done twice a year monthly memorial services with staff.

37. Conduct or makes arrangements for funeral or memorial services when requested.

38. Serve in on-call chaplaincy services when requested.

39. Provide educational programs for hospice staff, community clergy, religious and lay representatives as appropriate.

40. Provide direct spiritual support and end of life counsel to patients and families in keeping with the spiritual beliefs of the patient and family.

41. When a patient dies whether in the Home or a Nursing Facility, the Chaplain will try to be present to help the family and staff and give a listening ear and support. He/she will stay until after the Funeral Home comes to receive the body.

42. The Chaplain continues to be available to the staff in the event that they need to talk about their feelings of loss and grief, in a safe environment.

43. Chaplains are here to help encourage, Not to preach to you!!!!

44. The Dying Person in Various Care Settings

45. The Challenge for Nurses to Provide Quality End-of-Life Care • There are opportunities for providing quality end-of-life care in settings other than the traditional “hospice environment” • Attention to the unique needs of patients and families at this time reflects a commitment to nursing excellence

46. As the population ages and the incidence of chronic, progressive illness continues to increase there will be increased demands from patients and families as well as healthcare providers to have established standards of care for the dying and their families • To respond to the demands, the nursing profession must ensure that core competencies in end-of-life (EOL) care serve as a foundation to guide professional nurses in expert care of the dying

47. Nursing is the unique position to institute change/improvement within the system since the nurse is the conduit for assessing the needs of the patient and implementing the goals of a team care plan/treatment • The following content is applicable when providing end-of-life nursing care in any setting

48. The Need for Improved Care at the End of Life • Death and Dying in America: Changes over the Last Century • Late 1800s • Healthcare professionals had little to offer the sick beyond the easing of symptoms associated with disease • Most deaths occurred at home with extended family members caring for the dying person

49. Most died within days of onset of illness • Early to middle 1900s (growth of science and industry brought about broad, sweeping changes) • Improvements in living and working conditions, sanitation and an emphasis on disease prevention • Life-saving and life-prolonging treatments such as antibiotics, cardiopulmonary resuscitation and advances in anesthesia • The focus of healthcare shifted from easing suffering to curing disease

50. Society’s expectations changed regarding treatments and interventions for curable as well as incurable illnesses • Patients whose disease failed to respond to treatments were given less priority • Death itself became equated with medical failure • Recent demographics and social trends • Decreased age-adjusted death rate • Increased life expectancy; as death rates declined, life expectancy rose sharply and