1. End of Life Care in the ICU

2. Goals in Critical Care and Medicine
Save the lives of salvageable patients, restore health, relieve suffering and offer the dying a peaceful and dignified death.
Patients should expect excellence in all treatments, humanity and compassion, respect for autonomy.

3. End-of-life in the ICU
Use of intensive care at the end of life in the U.S. RWJ ICU End-of-Life Peer Group. Crit Care Med 2004
Projection: 540,000 people die after receiving ICU care each year. Of hospital deaths, half associated with ICU
1 in 5 Americans die in/after ICU hospitalization
Deaths in ICU: majority of deaths expected
>70% are preceded by withholding or withdrawing of life support
Intensivists actively manage deaths in ICU
Institute of Medicine – national priority
Society of Critical Care Medicine supports palliative model
More death in ICUs than elsewhere in hospital
States included NY, NJ, MA, FL, WA, VA – year 1999
550,000 deaths
22% of US population
Cost 24, 000 for terminal ICU hospitalizations
1.16 million individuals die each year in U.S. hospitals
By 2030, doubling of persons older than age 65
Palliative model for – forgoing life support, support decision-making and communication
70% of ICU survivors would go through ICU again for 1 more month of life
JAMA SUPPORT study
High mortality – ARDS, septic shock

4. Palliative Care Patient and family-centered
Alleviate suffering caused by illness - control symptoms
Communicate effectively about appropriate goals of treatment
Promote concordance of treatment with patient preferences
Promote quality of life
Quality of life as the outcome rather than morbidity/mortality
Does not hasten or prolong death, affirms life
Difficult – M&M, intense scrutiny
JAMA article on looking at mortality in hospitals – wrong measure, could this impede proper EOL care?

5. Quality of ICU Dying Experience
Look at quality indicators in modifiable and care system interventions
Mularski. Crit Care Med 2006

6. What are appropriate measures for quality in EOL Care?
Outcome:
Utilization of ICU
SUPPORT Study
ICU length of stay
Mortality
Holloway, Quill. JAMA 2007
Scoring, symptoms
Quality of Death and Dying: Crit Care Med 2004, Chest 2005
Family satisfaction
JAMA 2004
Process quality indicators:
Decision-making, communication
Symptom management
Using mortality as a measure of quality (ratings for hospitals)
Sends opposite message about EOL care
Patients come to hospitals to die
↓ prolongation of dying or rushing to decision? ICU LOS and mortality - Is it proper to transfer dying patients out of ICU -
Family perspectives on end-of-life care at the last place of care. JAMA 2004
Family follow-up after 1578 deaths
67% institution, 32% death at home
Unmet needs in institutions (more than 1/3 reported): inadequate treatment for pain or dyspnea, emotional support, respect, physician communication

7. End-of-life care for the critically ill: a national intensive care unit survey Nelson et al. Crit Care Med 2006
Survey of 428 ICUs, 590 ICU directors
Greatest Barriers to EOL Care
Unrealistic patient/family expectation
Lack of advance directives
Insufficient physician training in communication
Competing demands on physicians’ time
Suboptimal space for family meeting
Unrealistic MD expectations
Lack of palliative care service
Physicians posed greater barriers than nurses, particularly for communication with families

8. End-of-life care for the critically ill: a national intensive care unit survey Crit Care Med 2006
Strategies to improve EOL care
Role modeling by experienced clinicians
Training in communication
Training in symptom management
Regular family meetings
Bereavement programs
End-of-life care quality monitoring
Access to palliative care, ethics consultants
Regular pastoral care visits
Reported by >80-90% of respondents

9. Families support shared decision-making Recommend:
Clinical practice guidelines for support of the family in the patient-centered ICU: American College of Critical Care Medicine Task Force Crit Care Med 2007
Families support shared decision-making
Recommend:
Shared decision-making
ICU team informs about status and prognosis
ICU team strive to understand wishes about life-sustaining therapies
Family meetings
Training in communication
Most patients report that they want decision-making shared between family and physician

10. Decision making depends on communication
Goal is to use patient preferences in order to establish goals of care
The physician must provide information about the illness, treatments, and prognosis
Decisions depend on the patient’s values attached to life-prolongation, functioning, and comfort

11. Communication with Family
Communication with family: informal, family meetings
Provide information, understanding patient preferences, setting goals
Families: information, understanding
Crit Care Med over 50% of 102 ICU families failed to identify 1 failing organ, any treatment or prognosis
Chest hospitalized patients, 160 caregivers. Poor knowledge of CPR – treatments and outcome
One-day quantitative cross-sectional study of family information time in 90 ICUs in France. Crit Care Med 2007
Median time 16 minutes

12. Communication - Family conferences
Study of family conferences, Seattle, , Curtis et al
51/111 eligible conferences- audiotaped, family questionnaire
Mainly white patient/family and physicians, English-speaking
80% of patients died, WH/WDLS discussed in 86% of conferences
Family satisfaction with family conferences about end-of-life care in the ICU. Crit Care Med 2004
Conference time 32 minutes, clinicians 70% of time talking. Increased proportion of family speech was associated with increased satisfaction
Many shorter, informal meetings with family members, in preparation
Seattle

13. Communication - Family conferences
Missed opportunities during family conferences about end-of-life care in the ICU. Am J Respir Crit Care Med 2005
29% missed: listening/respond to question, inform about illness, ethics/palliative care, preferences, surrogate decision-making, nonabandonment, compassion
Clinician statements and family satisfaction with family conferences in the ICU. Crit Care Med 2006
Increased family satisfaction - 3 types of clinician statements:
Assurances that patient will not be abandoned before death
Assurances that patient will be comfortable and will not suffer
Support for the family’s decision about EOL, including withdrawing or not withdrawing life support
111 eligible – some families refused to speak with staff or declined.
Racial, cultural differences – both for families and physicians
Questions – how well doctor answered, listened, help decision, communicate, ask about what patient would want
These studies do not assess outcome – of patient, death – quality, etc.
Other factors may lead to family satisfaction – concordance of beliefs and recommendations, physician factors
Interventions – such as communication training, explicit statements of support

14. Prognostication during physician-family discussions about limiting life support in ICUs. Crit Care Med 2007
96% involved DNR, WDLS

15. Understanding Cardiopulmonary Resuscitation Decision Making. Chest 2006
Questionnaire to 440 patients with end-stage cancer and advanced diseases
Poor knowledge of CPR treatments (11% could identify 2 treatments) and outcome (2% thought success < 10%)
Many did not want to discuss preferences with doctor
Variable preferences for role in decision making. Most preferred including family member

16. Advance Directives Health care proxy, living will
Permit patients to make informed decisions about their health care
Promote patient autonomy: patients have the right to make decisions and this right is protected when conscious capacity is lost.
The Patient Self-Determination Act of 1991 requires hospitals to ask patients whether they have an advance directive

17. Patient with capacity to make health care decisions has the authority to decline life-sustaining treatment or ask that such treatment be withdrawn
Surrogate decision maker: patient’s representative to make decisions when the patient is incapable of making health care decisions
Substituted judgment: learn what the patient would have wanted if he or she had been able to understand and participate in the decisions

18. Do Not Resuscitate Order
A “Do Not Resuscitate (DNR)” order is one advance directive that concerns interventions in the setting of a cardiopulmonary arrest
A DNR order means that if the patient suffers a cardiopulmonary arrest, the interventions of intubation, CPR and ACLS will be withheld

19. Decision to Withdraw Life Support
Patient’s expressed wishes
Health care proxy or living will
Oral advance directive – requires Ethics Consultation

20. Withholding and Withdrawing Life-Sustaining Treatments
Based on the individual patient’s goals of therapy, withholding an intervention may be appropriate
As well, a trial of therapy with clear goals may be undertaken. If the goals are not achieved, withdrawing an intervention is acceptable
The motivation must be respect for patient preferences and avoiding burdensome interventions

21. Withdrawal of Life Support
Majority of physicians withdraw/withhold life support Am J Respir Crit Care Med 1995
Life-sustaining treatments: ventilation, vasopressors, dialysis, blood products, nutrition, hydration
>70% of ICU deaths are preceded by decision to WH/WD
Am J Respir Crit Care Med 1998

22. Withdrawal of Mechanical Ventilation in Anticipation of Death in the ICU Cook et al. N Engl J Med 2003
15 medical-surgical ICUs, 851 patients receiving mechanical ventilation
63% weaned, 17% died while receiving MV
19.5% died after withdrawal of MV
Determinants of withdrawal
Physicians’ perception of patient preference
Physician prediction of low likelihood of ICU survival and high likelihood of poor cognitive function
Dependency on inotropes and vasopressors

23. Symptoms in the Critically Ill
Patients die with treatable pain
The symptom burden of chronic critical illness. Crit Care Med 2004
Patient report: 50 patients with tracheostomy
40-50% of patients experienced pain at the highest levels of intensity, 60% dyspnea
Studied communicative patients so likely underestimate symptoms and relief
Half of patients died by 3 months

24. Nursing - Front Line
Nurse is the main caregiver – ICU, Palliative unit
Improve EOL care – MD/RN Communication
Differences in ideas of EOL, processes, good death, predicting outcomes of critically ill patients
Crit Care Med 2003: 1900 judgments by MD and RNs, disagreements in 63% of dying patients
MD and RN: Different experiences and burdens
Burdens – MD have to make decision
RN has to practice with decision made by someone else.
Experience – after a code MDs leave room. RN faces the mess and wraps the body.

25. Factors associated with nurse assessment of the quality of dying and death in the intensive care unit. Crit Care Med 2004.
178 patients
QODD: Control of pain, situation, breathing, dignity, time with family, spiritual/religious, someone present at death, on ventilator, proper amount of sedation
Independent predictors of QODD score:
CPR performed in last 8 hours of life – negative
Someone present at moment of death – positive
Seattle

26. Quality of Dying in the ICU Chest 2005
Ratings by families of 38 decedents, QODD
<50% had pain controlled
3% breathing comfortably
32% kept dignity and self-respect

27. Family Perspectives
Family perspectives on end-of-life care at the last place of care. JAMA 2004
Family follow-up after 1578 deaths
67% institution, 32% death at home
Unmet needs in institutions (more than 1/3 reported): inadequate treatment for pain or dyspnea, emotional support, respect, physician communication

29. How we can improve EOL care
Recognize end of life, preferences, goals of care for the patient
Process of ICU care: decision-making, communication, symptom management
Education, teaching communication skills
For ICU Nurses: involvement in EOL decisions
Communicate - MD, RN, family
Use resources: Nursing, Palliative, Critical Care, Geriatrics, Pastoral Care, Ethics, Social Work