An Innovative Educational Program to
Encourage Nurses to Be More FamilyCentered in End-of-Life Care
Connie Dahlin RN APN
Adele Keeley RN
Ed Coakley RN
Massachusetts General Hospital
Boston, 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
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
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
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
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
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
RWJF Study Background
1. Improve ICU care at end of life
2. Co-PIs: Nurse and MD
3. Four sites funded. Variety of settings
(trauma, community, city hospital, +/palliative care service, open/closed
units)
4. Shared home grown interventions
5. For all ICU patients; not just about
deaths
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Methods and Timeline
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/Communicate
4`
Adele Keeley Nurse Director
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
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 patientand family-centered care, whether it is
aimed at a “great save” or a “good death,”
is our mission.
Mission Statement
• The multidisciplinary process of
developing the statement and the
subsequent buy in by all the stake
holders were important first steps
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
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
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
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
ELNEC
• http://www.aacn.nche.edu/elnec/curric
ulum.htm
ELNEC Curriculum
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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
Nursing Care at the End of
Life
Pain Management
Symptom Management:
• Delerium
Ethical/Legal Issues:
• Barbara Howe
Boston Globe, March 12, 2005
Hospital, family agree to withdraw life support
Cultural Considerations in
EOL Care
Communication
• Clinical Time
Grief, Loss, Bereavement:
Achieving Quality Care at
the End of Life
• Susan Sontag
Preparation and Care at the
Time of Death in an ICU
Unexpected experience for many
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…”
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
MICU Nurse Perceptions on
the Quality of Deaths
Baseline vs.
Nursing QODD
Intervention
General quality of death
↑↑↑
Family relationship
↑
Physician communication
↓
Job satisfaction
↑↑↑
Results: All MICU Admits
Baseline Intervention
ICU admissions (#)
748
735
21.4%
17.1%
Case Mix Index (by DRG)
5.18
5.43
MICU/Hospital LOS (days)
5.7/19.7
5.5/18.5
8.3/15
7.6/14
$55,477
$57,958
ICU Mortality
MICU/Hospital LOS (non-survivors)
Mean Cost/patient
Family Perceptions
Baseline vs.
Heyland Family
Satisfaction Questionnaire Intervention
ICU experience
↑↑
Informational needs
↑↑
Decisions
+/-
Family QODD
+/-
What worked for us
1. Open visiting policy
2. Teaching and encouraging family
meetings with nurses uniformly
present for collaboration with MDs
3. Educating nurses in palliative care
knowledge and supporting their role.
MGH plans to extend the intervention
to other ICUs
What worked for us
4. Ethics and multi-disciplinary rounds
and improved psychosocial/ spiritual
attention to selected families in
collaboration with palliative care
5. Family orientation materials
6. “Get to Know Me” poster - a technique
that helps “humanize” the patient and
promote an alliance with the family
Lessons Learned I
1. Need to get on the same page
(Mission Statement). Process more
important than the product
2. Staff education (ELNEC) and support
has a big payoff
3. Teaching family meeting skills was
very well received by HOs and
Fellows.
Thank you