An Innovative Educational Program to An Innovative Educational Program to Encourage Nurses to Be More Family-Encourage Nurses to Be More Family-

Centered in End-of-Life CareCentered in End-of-Life Care

Connie Dahlin RN APNConnie Dahlin RN APN

Adele Keeley RN Adele Keeley RN

Ed Coakley RN Ed Coakley RN

Massachusetts General HospitalMassachusetts General Hospital

Boston, MABoston, MA

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

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

BackgroundBackground

• Critical care nurses attend to large numbers of Critical care nurses attend to large numbers of dying patientsdying patients

• An estimated 20% of intensive care patients in An estimated 20% of intensive care patients in the U.S. die while hospitalized in a critical care the U.S. die while hospitalized in a critical care unit.unit.

• Life and death decisions have to be made quicklyLife and death decisions have to be made quickly• Many of the patients are unconsciousMany of the patients are unconscious• Discussion with patients about limitation of Discussion with patients about limitation of

treatment occurs relatively infrequentlytreatment occurs relatively infrequently• Do-not-resuscitate decisions are left until late in Do-not-resuscitate decisions are left until late in

the illness, just days before deaththe illness, just days before death• More common for patient’s families to be the More common for patient’s families to be the

decision makersdecision makers

BackgroundBackground

• Majority of deaths involve the Majority of deaths involve the withholding or withdrawal of withholding or withdrawal of multiple life-sustaining therapiesmultiple life-sustaining therapies

• Decision making and Decision making and communication about these end-communication about these end-of-life decisions are difficultof-life decisions are difficult

• Understanding ICU culture is Understanding ICU culture is criticalcritical

BackgroundBackground• Meta-analysis of studies of needs of ICU Meta-analysis of studies of needs of ICU

family members family members • 8/10 family needs related to 8/10 family needs related to

communication with clinicianscommunication with clinicians• Desire moreDesire more listening listening• Needs primarily addressed by nurses Needs primarily addressed by nurses

• Deficits in end-of-life communication Deficits in end-of-life communication skills shared by nurses and physiciansskills shared by nurses and physicians

Hickey, Heart Lung 1990; Maguire, Eur J Cancer 1996

BackgroundBackground

• Study of outpatent MD/family Study of outpatent MD/family meetings: meetings: •MDs rarely explored patient goals MDs rarely explored patient goals

and valuesand values•Avoided discussing uncertaintyAvoided discussing uncertainty•Failed to explore reasons for Failed to explore reasons for

choiceschoices•Failed to discuss quality of life after Failed to discuss quality of life after

treatmenttreatmentTusky, Ann Int Med 1995

BackgroundBackground

• Study of inpatient MD/family Study of inpatient MD/family meetings: meetings: •MDs spend 75% of time talkingMDs spend 75% of time talking•Missed important opportunities for Missed important opportunities for

patients/families to discuss personal patients/families to discuss personal values important goals of Rxvalues important goals of Rx

•Majority felt they did a good jobMajority felt they did a good job

Tulsky, J Gen Int Med 1995

RWJF Study BackgroundRWJF Study Background1.1. Improve ICU care at end of lifeImprove ICU care at end of life2.2. Co-PIs: Nurse and MDCo-PIs: Nurse and MD3.3. Four sites funded. Variety of Four sites funded. Variety of

settings (trauma, community, city settings (trauma, community, city hospital, +/-palliative care service, hospital, +/-palliative care service, open/closed units)open/closed units)

4.4. Shared home grown interventionsShared home grown interventions5.5. For all ICU patients; not just about For all ICU patients; not just about

deathsdeaths

1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26 27 28 29 30 31 32 33 34

Preparation

Baseline Data Phase

Pilot

Intervention Phase

Evaluate/Communicate4`

MethodsMethods and Timelineand Timeline

Adele Keeley Nurse DirectorAdele Keeley Nurse Director

Mission StatementMission StatementBased on the Based on the 5th International Consensus International Consensus Conference in Critical Care: Brussels, Belgium,Conference in Critical Care: Brussels, Belgium,April 2003April 2003

• Patient and family Patient and family are Members of the MICU are Members of the MICU TeamTeam. .

• Measure success by Measure success by patient and family outcomespatient and family outcomes

• The attending physician is ultimately responsible The attending physician is ultimately responsible for the patient’s medical care in the ICU for the patient’s medical care in the ICU

Intensive Care Med. 2004

Mission StatementMission Statement

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

Mission StatementMission Statement

• The multidisciplinary The multidisciplinary processprocess of of developing the statement and developing the statement and the subsequent the subsequent buy inbuy in by all the by all the stake holders were important stake holders were important first stepsfirst steps

Family Meeting InterventionFamily Meeting Intervention• Family meetings Family meetings taught as a taught as a

procedureprocedure• Critical Care Grand Rounds Critical Care Grand Rounds • Monthly House Officer teaching sessions Monthly House Officer teaching sessions • Intensivist supervision and teachingIntensivist supervision and teaching

• 3x5 card 3x5 card • ““Guide to ICU Family Meetings” Guide to ICU Family Meetings” • ““Talking with ICU Families”Talking with ICU Families”

• Nurse Champions encouraged and Nurse Champions encouraged and taught good meeting technique taught good meeting technique

• Preparation (pre-meeting) involving the full Preparation (pre-meeting) involving the full teamteam

• Listen and “align”– Listen and “align”– who is our patient?who is our patient?

• Elicit understanding & concerns, information Elicit understanding & concerns, information preferences, preferences, then educatethen educate

• Elicit patient values & goals in order to ascertain Elicit patient values & goals in order to ascertain “substituted judgment”“substituted judgment”

• Recommendations, not a menu for the familyRecommendations, not a menu for the family

• The difficulty of prognosticationThe difficulty of prognostication

• Communicate, document, reflectCommunicate, document, reflect

Family Meeting TipsFamily Meeting Tips

Open VisitationOpen Visitation• Families welcome 24x7:Families welcome 24x7:

•Initial resistance from staffInitial resistance from staff•Subsequent enthusiasm: Subsequent enthusiasm:

emphasis on the patient emphasis on the patient andand family as the focus of carefamily as the focus of care

•Family involvement in bedside Family involvement in bedside carecare

• Catalyst for family involvement in Catalyst for family involvement in roundsrounds

Palliative Care ChampionsPalliative Care Champions

• 25 MICU nurses 25 MICU nurses • End of Life Nursing Education End of Life Nursing Education

Consortium (ELNEC) trainingConsortium (ELNEC) training• Coaching and mentoring in being Coaching and mentoring in being

a change agenta change agent• Quality improvement projectsQuality improvement projects• Go-To PeopleGo-To People

ELNECELNEC

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

ELNEC CurriculumELNEC Curriculum

• Nursing Care at the End of Life:Nursing Care at the End of Life: Overview of death and dying in America, principles and goals of 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 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. and healing, role of the nurse in EOL care.

• Pain Management: Pain Management: Definitions of pain, current status of and barriers to pain relief, components of Definitions of pain, current status of and barriers to pain relief, components of pain assessment, specific pharmacological, and non-pharmacological therapies including concerns pain assessment, specific pharmacological, and non-pharmacological therapies including concerns for special populations. for special populations.

• Symptom Management:Symptom Management: Detailed overview of symptoms commonly experienced at the EOL, and Detailed overview of symptoms commonly experienced at the EOL, and for each, the cause, impact on quality of life, assessment, and pharmacological/non-for each, the cause, impact on quality of life, assessment, and pharmacological/non-pharmacological management. pharmacological management.

• Ethical/Legal Issues:Ethical/Legal Issues: Recognizing and responding to ethical dilemmas in EOL care including issues Recognizing and responding to ethical dilemmas in EOL care including issues of comfort, consent, prolonging life, withholding treatment; euthanasia, and allocation of resources; 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. and legal issues including advance care planning, advance directives, and decision making at EOL.

• Cultural Considerations in EOL Care:Cultural Considerations in EOL Care: Multiple aspects of culture and belief systems, Multiple aspects of culture and belief systems, components of cultural assessment with emphasis on patient/family beliefs about roles, death and components of cultural assessment with emphasis on patient/family beliefs about roles, death and dying, afterlife, and bereavement. dying, afterlife, and bereavement.

• Communication:Communication: Essentials of communication at EOL, attentive listening, barriers to Essentials of communication at EOL, attentive listening, barriers to communication, breaking bad news, and interdisciplinary collaboration. communication, breaking bad news, and interdisciplinary collaboration.

• Grief, Loss, Bereavement: Grief, Loss, Bereavement: Stages and types of grief, grief assessment and intervention, and the Stages and types of grief, grief assessment and intervention, and the nurse's experience with loss/grief and need for support. nurse's experience with loss/grief and need for support.

• Achieving Quality Care at the End of Life: Achieving Quality Care at the End of Life: Challenge for nursing in EOL care, availability and Challenge for nursing in EOL care, availability and cost of EOL care, the nurses' role in improving care systems, opportunities for growth at EOL, 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. concepts of peaceful or "good death", "dying well", and dignity.

• Preparation and Care for the Time of Death:Preparation and Care for the Time of Death: Nursing care at the time of death including Nursing care at the time of death including physical, psychological, and spiritual care of the patient, support of family members, the death vigil, physical, psychological, and spiritual care of the patient, support of family members, the death vigil, recognizing death, and care after death recognizing death, and care after death

Nursing Care at the End of Nursing Care at the End of LifeLife

Pain ManagementPain Management

Symptom Management:Symptom Management:

• DeleriumDelerium

Ethical/Legal Issues:Ethical/Legal Issues:

• Barbara HoweBarbara Howe

                  

                                        

Boston Globe, March 12, 2005                 Hospital, family agree to withdraw life support

Cultural Considerations in Cultural Considerations in EOL CareEOL Care

CommunicationCommunication

• Clinical TimeClinical Time

Grief, Loss, Bereavement:Grief, Loss, Bereavement:

Achieving Quality Care at Achieving Quality Care at the End of Lifethe End of Life

• Susan SontagSusan Sontag

Preparation and Care at the Preparation and Care at the Time of Death in an ICUTime of Death in an ICU

Unexpected experience for manyUnexpected experience for many

Heard from the Champions…Heard from the Champions…

““more collaborative”more collaborative”““more cognizant”more cognizant”““more proactive”more proactive”““less mystery”less mystery”““able to articulate in a professional able to articulate in a professional

way”way”““confident to bring up the confident to bring up the

question…”question…”

Ethics RoundsEthics Rounds• Twice a month Twice a month • RNs, MDs, SW, Chaplain, Ethics RNs, MDs, SW, Chaplain, Ethics

Fellow, and Ethicist (Alex Cist)Fellow, and Ethicist (Alex Cist)• MICU RN Director frequently MICU RN Director frequently

attendsattends• Case discussionCase discussion• Review of DeathsReview of Deaths• Encouraged by RN ChampionsEncouraged by RN Champions

MICU Nurse Perceptions on MICU Nurse Perceptions on the Quality of Deathsthe Quality of Deaths

Nursing QODDNursing QODD

Baseline Baseline vs.vs.

InterventioInterventionn

General quality of deathGeneral quality of death ↑ ↑ ↑↑ ↑ ↑Family relationship Family relationship ↑↑

Physician communicationPhysician communication ↓↓Job satisfaction Job satisfaction ↑ ↑ ↑↑ ↑ ↑

Results: All MICU AdmitsResults: All MICU AdmitsBaselinBaselinee

InterventiInterventionon

ICU admissions (#)ICU admissions (#) 748748 735735

ICU Mortality ICU Mortality 21.4%21.4% 17.1%17.1%

Case Mix Index (by DRG)Case Mix Index (by DRG) 5.185.18 5.435.43

MICU/Hospital LOS (days)MICU/Hospital LOS (days) 5.7/19.75.7/19.7 5.5/18.55.5/18.5

MICU/Hospital LOSMICU/Hospital LOS (non- (non-survivors)survivors)

8.3/158.3/15 7.6/147.6/14

Mean Cost/patientMean Cost/patient $55,477$55,477 $57,958$57,958

Family PerceptionsFamily Perceptions

Heyland Family Heyland Family Satisfaction Satisfaction QuestionnaireQuestionnaire

Baseline Baseline vs.vs.

InterventioInterventionn

ICU experienceICU experience ↑ ↑↑ ↑Informational needs Informational needs ↑ ↑↑ ↑

DecisionsDecisions +/-+/-Family QODDFamily QODD +/-+/-

What worked for usWhat worked for us

1.1. Open visiting policyOpen visiting policy2.2. Teaching and encouraging family Teaching and encouraging family

meetings with nurses uniformly meetings with nurses uniformly present for collaboration with present for collaboration with MDsMDs

3.3. Educating nurses in palliative Educating nurses in palliative care knowledge and supporting care knowledge and supporting their role. MGH plans to extend their role. MGH plans to extend the intervention to other ICUsthe intervention to other ICUs

4.4. Ethics and multi-disciplinary Ethics and multi-disciplinary rounds and improved rounds and improved psychosocial/ spiritual attention psychosocial/ spiritual attention to to selectedselected families in families in collaboration with palliative carecollaboration with palliative care

5.5. Family orientation materialsFamily orientation materials6.6. ““Get to Know Me” poster - a Get to Know Me” poster - a

technique that helps “humanize” technique that helps “humanize” the patient and promote an the patient and promote an alliance with the familyalliance with the family

What worked for usWhat worked for us

Lessons Learned ILessons Learned I

1.1. Need to get on the same page Need to get on the same page (Mission Statement). Process (Mission Statement). Process more important than the productmore important than the product

2.2. Staff education (ELNEC) and Staff education (ELNEC) and support has a big payoffsupport has a big payoff

3.3. Teaching family meeting skills Teaching family meeting skills was very well received by HOs was very well received by HOs and Fellows. and Fellows.

Thank youThank you