Decision making at the End of Life XXXVII ACP Annual Chapter Meeting Panama City, Republic of Panama February 28, 2015 Thomas J. Prendergast, MD Clinical

Decision making at the End of Life

XXXVII ACP Annual Chapter MeetingPanama City, Republic of Panama

February 28, 2015

Thomas J. Prendergast, MDClinical Professor of Medicine, OHSU

Senior Scholar, Center for Ethics in HealthcareSection Chief, PCCM, Portland VAMC

Director, Respiratory Care and PFT Lab

Decision making at the End of Life, c. 1877The Doctor by Luke Fides. Tate Gallery, London

Decision making at the End of Life, c. 1952

Why is Aug 27 1952 relevant to today’s talk?


Dr. Bjørn Aage Ibsen

Dr. Henry C. A. Lassen

Polio Epidemic

Copenhagen

Summer,1952

West JB. J Appl Physiol. 2005;99(2):424


Communications in the ICU

1. There is uncertainty regarding patient outcomes

Three key observations about Critical Care:

Ante-mortem median 6 month predicted survival

Lynn J et al. New Horizons 1997;5(1):56-61

One day One week

All deaths – SUPPORT

7% 35%

CHF 42% 62%

COPD 21% 41%

COMA 11% 27%

MOSF & malignancy 5% 26%



2. Patients are often unstable and, therefore, decisions need to be made quickly


Retrospective chart and EMR review

DHMC Project ImpactTotal ICU Admissions 3,953Total ICU Deaths 793 (20%) 11,239

Death occurring<24 hours 222 (28%) 3,446 (31%)>24 hours 571 (72%) 7,793 (69%)

Data from April 1, 2001 through June 30, 2005



2. Patients are often unstable and, therefore, decisions need to be made quickly

3. Time-pressured decisions under conditions of uncertainty lead naturally to differences of opinion


Conflict among providers/patients/families

• There is disagreement between providers and surrogates over goals of treatment in 10-20% of dying ICU patients.1

• Multiple studies find conflict among providers in 30-70% of patients, principally between MDs and RNs2-4

1Prendergast and Luce, AJRCCM 155:15, 19972Azoulay E et al. Am J Respir Crit Care Med 2009; 180:853. 3Frick S et al. Crit Care Med 2003; 31:456. 4Breen C et al. J Gen Intern Med 2001; 16:283.

Communications in the ICU: A challenge

• The ICU is a complex and difficult communications environment.

• Disagreement over management recommendations is not an aberration; it is natural to the ICU.

• To be effective, the physician must to anticipate, recognize and manage disagreements to prevent conflict.

PRENDERGAST TJ et al. Am J Respir Crit Care Med 1998, 158, 1163-1167.DOI: 10.1164/ajrccm 158.4.9801108

© 1998 The American Thoracic Society

End-of-life care in 131 ICUs, c. 1995

PRENDERGAST TJ et al. Am J Respir Crit Care Med 1998, 158, 1163-1167.DOI: 10.1164/ajrccm 158.4.9801108© 1998 The American Thoracic Society

End-of-life care in 131 ICUs, c. 1995

Total ICU admissions 74,502Total ICU deaths 6,303 (8.5% mortality)Brain deaths 393 (6.2% of deaths)

Patients facing end-of-life decisions 5,910 Full resuscitation 1,544

(26%, 4-79%) Withholding of resuscitation 1,430 (24%, 0-

83%)Withholding of life support 797

(14%, 0-67%)Withdrawal of life support 2,139

(36%, 0-79%)

Research to guide best practice

What do patients want?

Research to guide best practice: patients

What do patients want?1. They may not know.2. You will not know unless you ask.3. They want loved ones to weigh their expressed

wishes with what family/surrogate thinks is best in the situation.

Sulmasy DP et al. JAGS 2007;55:1981

Research to guide best practice: family

What do family and surrogates want?•Timely, clear, compassionate communication

•Clinical decision making focused on patient preferences, goals and values

•Patient care, maintaining comfort, dignity, personhood

•Open access of families to patients

•Interdisciplinary support of families during and (for deceased patients) after the ICU stay

Nelson JE et al. Crit Care Med 38:808, 2010

Research to guide best practice: family

How do families respond to shared decision making?

• They find the burden of responsibility heavy, with high rates of anxiety (71%) and depression (50%).1

• They need time for cognitive processing and emotional adaptation.2, 3

• They need and seek guidance in this process.4

1. Furmis RRL. Intensive Care Med 2009;35:899

2. Barry LC et al. Am J Geriatr Psych 2002;10:447

3. Sinuff T et al. Crit Care Med 2009;37:1544. Apatira L et al. Ann Intern Med

2008;149:861

What guidance do family/surrogates want?

•Acknowledgement of their emotional distress1

•Effective sharing of prognostic information2, 3, 4

•Respect for the dynamics of their communications style in a shared decision making process5

1. Selph RB et al. JGIM 2008;23:13112. Apatira L et al. Ann Intern Med

2008;149:8613. Evans LR et al. AJRCCM 2009;179:484. Zier LS et al. Crit Care Med

2008;36:23415. Shanawani H et al. Chest 2008;133:775

Research to guide best practice: prognosis

A. Many families don’t want prognostic information

B. Nearly all families want to hear a MD’s recommendation

C. A majority of families respect intensivists’ predictions at the same time they don’t believe them

D. Once a decision to withdraw life support is made, families want the process to proceed promptly.

WHICH STATEMENT IS CORRECT?

Research to guide best practice: prognosis

A. Many families don’t want prognostic information


C. A majority of families respect intensivists’ predictions at the same time they don’t believe them


Prognosis

A. Many families don’t want prognostic information.

In fact, 93% of surrogates of ICU pts reported that avoiding discussions about prognosis was unacceptable1, and 87% wanted physicians to disclose prognosis2.

Only 3% would refuse prognostic information.1

1Apatira L et al Ann Intern Med 2008;149:8612Evans LR et al. AJRCCM 2009;179:48

Prognosis


In fact, families/surrogates have a range of preferences about physician recommendations to withdraw life support:

56% preferred to receive a recommendation 42% did not want a physician’s recommendation

White D et al. AJRCCM 2009;180;320

Prognosis


In fact, most families need time: perceived lack of preparedness for a loved one’s death associated with complicated grief (OR 1.78) and MDD (1.93) at 9 months.1

In families of 584 pts who died in the ICU, longer duration (>1d) of withdrawal was associated with increased family satisfaction with care.2

1Barry LC et al Am J Geriatr Psychiatry 2002;10:4472Gerstel E et al. AJRCCM 2008;178:798

Prognosis C. A majority of families respect intensivists’

predictions at the same time they don’t believe them

87% of 179 surrogates (for 142 ICU patients) wanted physicians to disclose prognosis even while they admitted that they did not trust the accuracy of those predictions.1

1Evans LR et al. AJRCCM 179:48, 2009

Prognosis C. A majority of families respect intensivists’

predictions at the same time they don’t believe them

Surrogates interpret prognostic information in light of

Lack of specific information from medical staff Their assessment of the patient’s physical appearance The patient’s personal history of overcoming adversity or illness Their assessment of the patient’s ‘will to live’ The power of their presence at the bedside to help the patient Non-linear (“magical”) thinking

1Boyd EA et al. Crit Care Med 38:1270, 2010

Research to guide best practice: Communication

A. When a patient and family/surrogate together receive a cancer diagnosis, the patient takes longer to understand than the surrogate.

B. Early palliative care offered to patients with advanced NSC lung cancer improves QOL and does not affect survival.

C. Helping your cancer patient to understand his/her true prognosis is associated with improved patient satisfaction.

D. ICU pt surrogates demonstrate systematic bias towards optimism when interpreting physician predictive statements.

WHICH STATEMENT IS CORRECT?


A. When a patient and family/surrogate together receive a cancer diagnosis, the patient takes longer to understand than the surrogate.

B. Early palliative care offered to patients with advanced NSC lung cancer improves QOL and does not affect survival.

C. Helping your cancer patient to understand his/her true prognosis is associated with improved patient satisfaction.

D. ICU pt surrogates demonstrate systematic bias towards optimism when interpreting physician predictive statements.


B. Early palliative care offered to patients with advanced lung cancer improves QOL and does not affect survival.

In fact, in a cohort of 151 patients with metastatic non-small-cell lung cancer randomized to standard oncologic care v standard oncologic care integrated with early palliative care.

Intervention group had Improved QOL Reduced depressive symptoms Less frequent aggressive EOLC Improved survival (11.6 v 8.9 months, p = 0.02)

Temel JS et al, NEJM 363:733, 2010


C. Helping your patient to understand true prognosis is associated with improved patient satisfaction.

In fact, a US study of 1193 patients who received chemotherapy for metastatic lung or colorectal cancer reported that a clear understanding of the lack of curative potential of treatment was strongly associated with unfavorable ratings of their provider’s communication skills.1

1Weeks JC et al, NEJM 367:1616, 2010


D. Surrogates demonstrate systematic bias towards optimism when interpreting MD’s predictive statements.

In fact, surrogates correctly interpret prognostic statements that suggest a low risk of patient death, but demonstrate bias toward optimism when presented statements predicting a high risk of death.

Therefore, the cause of optimism in high-mortality patients is less likely to be innumeracy or misunderstanding and more likely to be cognitive bias.

Zier LS et al Ann Intern Med 156:360, 2012


A. When a patient and family/surrogate together receive a CA dx, pt takes longer to understand than the surrogate.

28 patients recently diagnosed with hematologic malignancies were asked to describe the day they learned of their diagnosis. Surrogates described feeling the full force of the diagnosis almost immediately. Patients tried to make sense of the info first, which they did through placing the disclosure into a narrative of prior interactions around health care.

The emotional impact often emerged gradually, catalyzed by an innocuous event such as realizing that the other patients in the waiting room have cancer.

The level of trust in providers was strongly influenced by prior encounters with the health care system. Schaepe KS. Soc Sci & Med 73:912, 2011


Giving families a leaflet that explains your ICU reduced the proportion of family members with poor comprehension from 40.9% to 11.5% (p < 0.0001).1

367 consecutive trauma ICU patients in a prospective, observational pre-post study of a structured palliative care intervention2:

More discussion of pt goals on rounds 36% v 4% Fewer ICU days 6.1d v 7.6d Shorter time to DNR 7d v 20d Mortality no change

1 Azoulay E. AJRCCM 2002;165:438. 2Mosenthal AC et al. J Trauma 2008;64:1587

Withdrawal Principles 2015

Anything can be withdrawn – except care.There is broad consensus in NA and Europe that

withholding and withdrawal are morally acceptable and legally equivalent.

Withdrawal of life support is common in NA and Europe.

There is scant evidence to guide best practices and many relevant studies are >10 years old.

The objective in withdrawal is to stop unwanted and/or ineffective treatments.

Is it necessary in all circumstances to have recourse to all possible remedies?

It is permitted, with the patient's consent, to interrupt [the most advanced medical techniques] where the results fall short of expectations.

One cannot impose on anyone the obligation to have recourse to a technique already in use but which carries a risk or is burdensome. Such a refusal is not the equivalent of suicide; on the contrary, it should be considered as an acceptance of the human condition, or a wish to avoid the application of a medical procedure disproportionate to the results that can be expected, or a desire not to impose excessive expense on the family or the community.

When inevitable death is imminent in spite of the means used, it is permitted in conscience to take the decision to refuse forms of treatment that would only secure a precarious and burdensome prolongation of life, so long as the normal care due to the sick person in similar cases is not interrupted. In such circumstances the doctor has no reason to reproach himself with failing to help the person in danger.

DECLARATION ON EUTHANASIASACRED CONGREGATION FOR THE DOCTRINE OF THE FAITHHis Holiness Pope John Paul II May 5, 1980

Research to guide best practice: Mechanics

A. You should always reduce FIO2 and RR before taking the patient off the ventilator.

B. Patients should be given an opioid and a sedative (BZD) prior to withdrawal

C. Institutional protocols improve the quality of patient deaths, as measured by nurse assessment.

D. When implementing orders to withdraw life support, one objective is to slow the process to allow families to adjust.

WHICH STATEMENT HAS BEEN SHOWN FALSE IN A CLINICAL STUDY?




C. Institutional protocols improve the quality of patient deaths, as measured by nurse assessment.

D. When implementing orders to withdraw life support, one objective is to slow the process to allow families to adjust.



EXPERT RECOMMENDATON. NO RESEARCH DATA.


EXPERT RECOMMENDATON. NO RESEARCH DATA.

D. When implementing orders to withdraw life support, one objective is to slow the process to allow families to adjust

SURVEYS SHOW THAT FAMILIES NEED TIME TO PREPARE FOR DEATH BUT NO TRIALS COMPARING DIFFERENT PACES OR STRATEGIES.


Institutional protocols improve the quality of patient deaths, as measured by nurse assessment.

Pre-post assessment of a clinical intervention (a specific ICU order form for withdrawal of life support) led to:

High levels of MD/RN satisfaction Increased doses of opioids and BZD No change in time from DMV to patient death No change in nurse-assessed QODD scores

Treece PD et al. Crit Care Med 2004;32:1141

Usefulness of Protocols

Standardize management Facilitate appropriate sedation/analgesia practice Opportunity to develop an alliance with nursing

and RT Convey institutional support for bedside

caregivers who may have reservations Facilitate continuing *QI*: essential in a minimal

data environment, including surveying clinicians (M&M, QODD) and families (satisfaction with care).

Recommendations (in a context of little research data)

• Treat the process as any other medical procedure but use care with language.

• Be very clear about objectives, expectations and process with pt/surrogate. Document this in the EMR.

• Establish an order sheet, checklist or protocol to standardize the process of withdrawal (see link below)

http://www.capc.org/ipal/ipal-icu

Standardized process

1. Prepare the space: silence all alarms, turn off bedside monitors, remove lines/tubes/devices, d/c all previous orders not directed at pt comfort (NMB!).

2. Write a DNR/DNI order if not already completed.

3. Ensure the presence of a physician at the onset of withdrawal. Seek assistance from others: social work, chaplaincy, palliative care, bereavement counselors.

4. Establish sedation (midazolam or lorazepam 1-5 mg IV) and analgesia (morphine 2-10 mg or fentanyl 25-100 μg IV) as indicated. Titrate to RR≤25, HR<100.

5. Turn FIO2 to 0.21, PEEP to zero. Reduce IMV rate or PSV level to 5 over a short interval (5-15 min). Adjust sedation to meet HR and RR goals.

6. Attend to symptoms while setting specific measurable goals for administration of analgesia and sedation.

7. When the patient appears comfortable, either extubate (preferred) or disconnect the ventilator leaving ETT in place (“t-piece”). Adjust sedation.

8. Attend to families during and AFTERWARDS.

Documents

Decision making at the End of Life XXXVII ACP Annual Chapter Meeting Panama City, Republic of Panama February 28, 2015 Thomas J. Prendergast, MD Clinical