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Palliative Care in the ICU: Spotting and Surmounting the Obstacles. HERTZBERG PALLIATIVE CARE INSTITUTE. Judith Nelson, MD, JD Mount Sinai School of Medicine March 2006. Overview of Presentation. BARRIERS Empirical Evidence Commentary STRATEGIES Palliative Care Consultation

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Palliative Care in the ICU:Spotting and Surmounting the Obstacles


Judith Nelson, MD, JD

Mount Sinai School of Medicine

March 2006

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Overview of Presentation


    • Empirical Evidence

    • Commentary


    • Palliative Care Consultation

    • Routine Quality Monitoring/Feedback


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Death in ICUs

  • Among patients dying in hospitals, half in ICUs within 3 days of death; one-third have 10 ICU days during final hospitalization

  • Each year, 1 in 5 Americans ( > 500,000 people) die in ICU or after ICU tx during terminal hosp admission (Angus, CCM 2004)

  • Even with optimal care, mortality for common ICU conditions ranges from ̴ 30% (sepsis, ARDS) to ̴ 75% (MV > 75 yrs)

    Typically, more death in ICUs than anywhere else in the hospital

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Existing Evidence: Unmet Palliative Needs

  • Communication is deficient, quantitatively and qualitatively

  • Many patients experience symptom distress, underestimated and undertreated by caregivers

  • Prevailing practices (e.g. w/d of LST) are inconsistent, irrational

  • Clinicians and others are troubled by the current situation

    J Intens Care Med 1999; Crit Care Med 2001 - Crit Care Peer Workgroup

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Why, then, is change so slow and difficult?

Can we accelerate the process?

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Barriers and Beholders

  • Survey Evidence:

    • Critical care nurses in AACN

      • Kirchhoff. Am J Crit Care 2000.

    • Nurses and physicians in WV ICUs

      • Moss. W Va Med J 2005.

    • Nursing and physician directors of US ICUs

      • Nelson. (In peer review.)

  • Opinion/Literature Review:

    • European perspective

      • Fassier. Curr Opin Crit Care 2005.

    • North American views

      • White. Curr Opin Crit Care 2005.

      • Nelson. Crit Care Med (Supp) 2001; Crit Care Med (Supp) 2006 (in press).

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End-of-Life Care:A National Survey of ICU Directors

JE Nelson, DJ Cook, DC Angus, L Weissfeld, M Danis, KA Puntillo, D Deal, M Levy

For the Robert Wood Johnson Foundation Critical Care Peer Workgroup of Promoting Excellence in End-of-Life Care

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Questionnaire Mailed to RN/MD Directors of 600 ICUs in Random, National Sample

  • Format: Possible barriers (32 items):

    • Institutional/ICU, Clinician (MD/RN), Patient/Family

    • 1- a huge barrier to 5- not a barrier at all

  • Validity: Clinically sensible and reliable

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Nationally-Representative Random, National Sample Respondent Cohort

  • 468 of 600 (78%) ICUs

    • 428 hospitals

  • 590 of 1205 (49%) ICU directors

    • 406 (65.1 %) nursing directors

    • 184 (31.7 %) physician directors

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National ICU Survey Random, National Sample:

% Rating Large/Huge



Barrier to EOL Care

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Nurse-Physician Concordance Random, National Sample

N = 85 pairs of responses from MDs and RNs representing same ICUs:

  • No statistically significant differences re barriers

  • Both disciplines considered MDs to pose greater barriers than RNs

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Patient and Family Perspectives? Random, National Sample

  • Family needs

    • communication, patient comfort

  • Family ratings of ICU experience, quality of dying and death – Canada and US

  • No direct information published re perceived barriers, relative magnitude or importance

    → Perspectives of patients and families are essential, though difficult to obtain

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Core Factors Random, National Sample

  • Death denial → unrealistic expectations

  • Prognostic uncertainty → paralysis

  • Patient “autonomy” → burden, conflict

  • “Silos” of disciplines, specialties → fragmented care

→ → Slow Change

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“For most patients, two fundamental facts ensure that the transition to death will remain difficult. First is the

widespread and deeply held desire not to be dead.

Second is medicine’s inability to predict the future … to give patients a precise and reliable prognosis…

When death is the alternative, many patients who have only a small amount of hope will pay a high price to continue the struggle.”

Finucane TE. JAMA 1999; 282:1670.

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Prognostic Uncertainty transition to death will remain difficult. First is the

  • Possibility of survival, in baseline, even good health

  • Poor prognosis  certain death

  • Median predicted 2-month survival of SUPPORT patients = 20% on day before death, 50% week before death -Lynn J, New Horizons, 1997

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“Autonomous” Decision-Making transition to death will remain difficult. First is the

Fewer than 10% of ICU patients can participate in treatment decisions.

Easy to drown in a sea of surrogates, whose levels of anxiety and depression impair their own capacity for decision-making.

-Pochard, CCM 2001; 29:1893

-Pochard, JCC 2005; 20:90

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Palliative Care in the ICU transition to death will remain difficult. First is the

  • Integrative

  • Interdisciplinary

  • Family (and Patient) - Centered

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“Integrative Palliative Care” transition to death will remain difficult. First is the

  • Incorporated in comprehensive critical care for all patients, including those pursuing life-prolonging treatments

  • Not simply a sequel to failed intensive care, but a synchronous, synergistic, component of ICU treatment

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Models for Integrating transition to death will remain difficult. First is thePalliative Care in the ICU

  • Increased attention to and competency in palliative care within the ICU team

  • Increased input from non-ICU palliative care consultants

  • Ends of spectrum, not mutually exclusive

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Promoting Palliative Care Excellence in Intensive Care: RWJ Foundation

Four demonstration projects:

U Wash, MGH, Lehigh Valley Hosp, UMDNJ

“Each project suggests a cultural change in critical care settings that fuses palliative care into existing practice patterns, and includes educating ICU staff and embedding palliative care practice in daily hospital routines.”

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Specific Strategies to Improve EOL Care Foundation in ICUs (National ICU Director Survey)

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Palliative Care Consultation in the ICU: Foundation

Crossing A Cultural Divide

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Morrison et al. Foundation J Palliat Med (12/05).

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Evidence of Benefit Foundation

Studies show improvements in

care quality and costs:

► Better control of pain and other symptoms

► Higher patient and family satisfaction

► Shorter ICU and hospital length of stay

► Savings in ancillary services and pharmacy costs

Campbell. Chest 2003; 123:266-71.

Higginson. J Pain Sympt Manage 2003; 25:150-68.

Finlay. Ann Oncol 2003; 13 Suppl:257-64.

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Before-After Study of Foundation Proactive Palliative Care Consult in MICU

  • Palliative care consult (NP/MD):

    • Anoxic encephalopathy after cardiac arrest

    • MODS: >3 organs for >3 days

  • Goals of the consult:

    • Communicate prognosis to family

    • Identify patient preferences

    • Discuss treatment options with family

    • Implement palliative care strategies

Campbell, Chest 2003; 123:266.

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Palliative Care Consults in MICU Foundation

Both diagnostic groups:

↓time from identification of diagnosis to comfort care goals (4-5 days)

  • Anoxic encephalopathy:

    ↓ ICU and hospital LOS (3-4 days) vs. historical control group

Campbell, Chest 2003; 123:266.

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Other Successful Interventions Foundation

  • Lilly CM. An intensive communication intervention for the critically ill. Am J Med 2000; 109: 469.

  • Schneiderman LJ. Effect of ethics consultations on nonbeneficial life-sustaining treatments in the intensive care setting: a RCT. JAMA 2003; 290:1166.

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Mount Sinai Experience: Foundation 7/04-6/05

For patients with PC consultation vs. DRG/age-matched controls without:

  •  ICU length of stay, especially for long-stay patients

  • Both for survivors and non-survivors

  • Savings in ancillary services and pharmacy costs

Morrison RS (unpublished data).

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Palliative Care Consultation in the ICU Foundation

  • Collaboration is improving - but closed door, “parallel play,” “relay-racing,” and conflict continue

  • Respective roles require further definition

  • Locally-appropriate balance needed between internal ICU capability and expert input on complex or refractory problems

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“More is More vs. Less is More” Foundation

  • Both ICU and PCCS to adjust approach: “more or less is more”

  • “Understand the setting/culture, screen pro- actively, respond rapidly, maintain visibility, learn the language, respect the expertise, offer assistance to ICU” (M. Campbell)

  • “If you are selling death, you will have very few customers” (D. Meier)

  • Curtis JR, Rubenfeld. Improving palliative care for patients in the intensive care unit. J Pall Med 2005; 8: 840.

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Domains of ICU Foundation End-of-Life Care Quality

  • Patient- and family-centered decision-making

  • Communication

  • Continuity of care

  • Emotional and practical support

  • Symptom management and comfort care

  • Spiritual support

  • Emotional and organizational support for ICU clinicians

Clarke et al. Crit Care Med 2003; 31:2255-2262.

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VHA’s “Transformation of the ICU” Project: Foundation Palliative Care “Bundle” of Quality Indicators

  • VHA, Inc.: Cooperative network of > 25% of US not-for-profit, academic and community hospitals

  • TICU: Performance improvement project, > 60 ICUs have participated to date

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VHA’s Palliative Care “Bundle” Foundation

  • “Bundle” = Core set of “best practices” applied together for maximum effect on quality

  • TICU ICUs implemented bundles of quality indicators for sepsis, CRBI, vent mgt

    • striking and sustained QI with compliance

  • Palliative Care Bundle in advanced stage of development

  • First tool for ongoing, routine, monitoring and performance feedback

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Development Team Foundation

J Nelson, MD, JD, P Pronovost, MD, PhD,

C Mullerkin, MSW, LCSW, L Adams, MS

TICU Clinical Teams, Measurement Team, Faculty/Staff Colleagues

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Development Process Foundation

  • Elicited input from multiple (~ 60) TICU ICUS - diverse disciplines, perspectives (RN, MD, SW, resp therapy, pharmacy, admin)

  • Using strongest available evidence and judgment, project team narrowed content for abbreviated, feasible tool

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External Review Foundation

Interdisciplinary panel of national experts outside TICU:

  • National Consensus Proj for Quality Pall Care

  • National Quality Forum

  • RWJF Promoting Excellence in ICU EOL Care

  • Center to Advance Palliative Care


  • Rand Corporation (AHRQ project)

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Day 1 Foundation

(1) Identify decision-maker

(2) Address AD status

(3) Address CPR status

(4) Distribute info leaflet

(5) Assess pain regularly

(6) Manage pain optimally

Day 3

(7) Offer social work support

(8) Offer spiritual support

Day 5

(9) Family meeting

VHA Palliative Care Bundle

(10) Organizational ICU Assessment: Family meeting room

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  • Data collection tool Foundation

  • Detailed specifications – e.g.

    • - numerators and denominators

    • - “interdisciplinary family meeting”

    • - “family information leaflet”

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Process vs outcome measures Foundation

E.g., whether SW offered, not whether accepted or effective; whether meeting occurred, not whether informative or satisfactory

Medical record review vs. direct observation

Practical, relevant, action trigger

Subset of indicators

Avoid undue measurement burden, while relying on strongest available evidence

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Pilot Data Collection: November 2005 Foundation

16 ICUs: Med/Surg (5), Mixed (4), Med (4), Surg (3) 10 hospitals, N = 94

  • Information Leaflet 43.2%

  • Social Work Support 61.1%

  • Spiritual Support 37.5%

  • Interdiscipl Fam Meeting 40.0%

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Further Testing of Measures Foundation as Quality Indicators

  • Patient/family perspective

  • Impact on selected outcomes

  • System redesign for implementation

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Recent/Ongoing Foundation

  • “Improving the Quality of EOL Care in the ICU: Interventions that Work” (2/06) → CCM Supp ’06

  • Am Coll CC Med: Updating “Recommendations for EOL Care in the ICU” (original: CCM 2001)

  • VHA “Palliative Care Bundle” of Quality Measures

  • RWJ Grantees’ Emerging Reports

  • Collaborations between AAHPM and critical care professional societies

  • Communication Skills Training

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The fastest way to our objectives is to Foundation

observe the speed limits.