An Innovative Educational Program to Encourage Nurses to Be More Family-Centered in End-of-Life Care

1. An Innovative Educational Program to Encourage Nurses to Be More Family-Centered in End-of-Life Care Connie Dahlin RN APN Adele Keeley RN Ed Coakley RN Massachusetts General Hospital Boston, MA

2. Massachusetts General Hospital • 900 Beds (122 ICU beds) • Level I Trauma

3. MGH MICU (18 beds) • Closed ICU with ~ 60 FTE nurses • 2 ICU teams: Intensivist, fellow, HOs, students • Medical with trauma, surgical boarders • Unit-based social worker, case manager, RT, chaplain

5. Background • Critical care nurses attend to large numbers of dying patients • An estimated 20% of intensive care patients in the U.S. die while hospitalized in a critical care unit. • Life and death decisions have to be made quickly • Many of the patients are unconscious • Discussion with patients about limitation of treatment occurs relatively infrequently • Do-not-resuscitate decisions are left until late in the illness, just days before death • More common for patient’s families to be the decision makers

6. Background • Majority of deaths involve the withholding or withdrawal of multiple life-sustaining therapies • Decision making and communication about these end-of-life decisions are difficult • Understanding ICU culture is critical

7. Background • Meta-analysis of studies of needs of ICU family members • 8/10 family needs related to communication with clinicians • Desire more listening • Needs primarily addressed by nurses • Deficits in end-of-life communication skills shared by nurses and physicians Hickey, Heart Lung 1990; Maguire, Eur J Cancer 1996

8. Background • Study of outpatent MD/family meetings: • MDs rarely explored patient goals and values • Avoided discussing uncertainty • Failed to explore reasons for choices • Failed to discuss quality of life after treatment Tusky, Ann Int Med 1995

9. Background • Study of inpatient MD/family meetings: • MDs spend 75% of time talking • Missed important opportunities for patients/families to discuss personal values important goals of Rx • Majority felt they did a good job Tulsky, J Gen Int Med 1995

10. RWJF Study Background • Improve ICU care at end of life • Co-PIs: Nurse and MD • Four sites funded. Variety of settings (trauma, community, city hospital, +/-palliative care service, open/closed units) • Shared home grown interventions • For all ICU patients; not just about deaths

11. Methodsand Timeline

12. Adele Keeley Nurse Director

13. Mission Statement Based on the 5th International Consensus Conference in Critical Care: Brussels, Belgium, April 2003 • Patient and family are Members of the MICU Team. • Measure success by patient and family outcomes • The attending physician is ultimately responsible for the patient’s medical care in the ICU Intensive Care Med. 2004

14. Mission Statement • Both living and dying in the ICU involves focusing from the very beginning on comfort as well as cure. We believe that palliative care must begin from the moment the patient and family enter our unit. Providing the best possible patient- and family-centered care, whether it is aimed at a “great save” or a “good death,” is our mission.

15. Mission Statement • The multidisciplinary process of developing the statement and the subsequent buy in by all the stake holders were important first steps

16. Family Meeting Intervention • Family meetings taught as a procedure • Critical Care Grand Rounds • Monthly House Officer teaching sessions • Intensivist supervision and teaching • 3x5 card • “Guide to ICU Family Meetings” • “Talking with ICU Families” • Nurse Champions encouraged and taught good meeting technique

17. Family Meeting Tips • Preparation (pre-meeting) involving the full team • Listen and “align”– who is our patient? • Elicit understanding & concerns, information preferences, then educate • Elicit patient values & goals in order to ascertain “substituted judgment” • Recommendations, not a menu for the family • The difficulty of prognostication • Communicate, document, reflect

22. Open Visitation • Families welcome 24x7: • Initial resistance from staff • Subsequent enthusiasm: emphasis on the patient and family as the focus of care • Family involvement in bedside care • Catalyst for family involvement in rounds

23. Palliative Care Champions • 25 MICU nurses • End of Life Nursing Education Consortium (ELNEC) training • Coaching and mentoring in being a change agent • Quality improvement projects • Go-To People

24. ELNEC • http://www.aacn.nche.edu/elnec/curriculum.htm

25. ELNEC Curriculum • Nursing Care at the End of Life: Overview of death and dying in America, principles and goals of hospice and palliative care, dimensions of and barriers to quality care at EOL, concepts of suffering and healing, role of the nurse in EOL care. • Pain Management: Definitions of pain, current status of and barriers to pain relief, components of pain assessment, specific pharmacological, and non-pharmacological therapies including concerns for special populations. • Symptom Management: Detailed overview of symptoms commonly experienced at the EOL, and for each, the cause, impact on quality of life, assessment, and pharmacological/non-pharmacological management. • Ethical/Legal Issues: Recognizing and responding to ethical dilemmas in EOL care including issues of comfort, consent, prolonging life, withholding treatment; euthanasia, and allocation of resources; and legal issues including advance care planning, advance directives, and decision making at EOL. • Cultural Considerations in EOL Care: Multiple aspects of culture and belief systems, components of cultural assessment with emphasis on patient/family beliefs about roles, death and dying, afterlife, and bereavement. • Communication: Essentials of communication at EOL, attentive listening, barriers to communication, breaking bad news, and interdisciplinary collaboration. • Grief, Loss, Bereavement: Stages and types of grief, grief assessment and intervention, and the nurse's experience with loss/grief and need for support. • Achieving Quality Care at the End of Life: Challenge for nursing in EOL care, availability and cost of EOL care, the nurses' role in improving care systems, opportunities for growth at EOL, concepts of peaceful or "good death", "dying well", and dignity. • Preparation and Care for the Time of Death: Nursing care at the time of death including physical, psychological, and spiritual care of the patient, support of family members, the death vigil, recognizing death, and care after death

26. Nursing Care at the End of Life

27. Pain Management

28. Symptom Management: • Delerium

29. Ethical/Legal Issues: • Barbara Howe Boston Globe, March 12, 2005 Hospital, family agree to withdraw life support

30. Cultural Considerations in EOL Care

31. Communication • Clinical Time

32. Grief, Loss, Bereavement:

33. Achieving Quality Care at the End of Life • Susan Sontag

34. Preparation and Care at the Time of Death in an ICU Unexpected experience for many

35. Heard from the Champions… “more collaborative” “more cognizant” “more proactive” “less mystery” “able to articulate in a professional way” “confident to bring up the question…”

36. Ethics Rounds • Twice a month • RNs, MDs, SW, Chaplain, Ethics Fellow, and Ethicist (Alex Cist) • MICU RN Director frequently attends • Case discussion • Review of Deaths • Encouraged by RN Champions

37. MICU Nurse Perceptions on the Quality of Deaths

38. Results: All MICU Admits

39. Family Perceptions

40. What worked for us • Open visiting policy • Teaching and encouraging family meetings with nurses uniformly present for collaboration with MDs • Educating nurses in palliative care knowledge and supporting their role. MGH plans to extend the intervention to other ICUs

41. What worked for us • Ethics and multi-disciplinary rounds and improved psychosocial/ spiritual attention to selected families in collaboration with palliative care • Family orientation materials • “Get to Know Me” poster - a technique that helps “humanize” the patient and promote an alliance with the family

42. Lessons Learned I • Need to get on the same page (Mission Statement). Process more important than the product • Staff education (ELNEC) and support has a big payoff • Teaching family meeting skills was very well received by HOs and Fellows.

43. Thank you