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Discussion on EOL Care and Prognosis
Louis Voigt, MD
March 2014
Disease-specific Mortality Rates in USA
Total Number of Deaths
800,000
700,000
600,000
500,000
400,000
300,000
200,000
100,000
0

US Census Bureau 2010

Total Number of Deaths
Death and Dying
• 20% sudden death
• MI
• Trauma
• PE

• 80% death from chronic illnesses
• Cardiovascular diseases
• Cancer
• COPD
Disease and Death Trajectories

Murray SA et al: BMJ 2005;330:1007-11
Where do People Die?
•
•
•
•
•

National Mortality Followback Survey (NMFS)
10,122 deaths analyzed in 1993
58% patients died in Hospital
22% died at home
20% in Nursing Home

Teno JM et al. Med Care 2003;41:323-35
Deaths in ICU
•
•
•
•
•

552,157 deaths in 1999 in FL, MA, NJ, NY, VA, WA
38.3% of deaths in hospitals
22.4% of deaths after ICU admission
Death in ICU after a median LOS of 12.9 days
Cost: $24,541.00

Angus DC et al. Crit Care Med 2004;32:638-43
ICU use in Last Month of Life

• Were these patients offered the opportunity to

discuss their preferences?
Teno JM et al. JAMA 2013;309:3470-477
Discomfort and Lack of Training
• Medical oncologists do not routinely discuss prognosis
• Survey of 729 MD Oncologists
• 73% admitted that training on prognosis communication was lacking
• 96% believed that such education should be part of cancer care
training

• Physicians caring for advanced cancers
• Provide frank estimate 37%
• No estimate or inaccurate estimate (consciously) 63%

• Physicians tend to make different treatment
recommendations to their patients than they would
choose for themselves
Daugherty CK et al. J Clin Oncol 2008;26:5988-93 Lamont EB et al. Ann Intern Med 2001;134:1096-105 Ubel PA et al. Arch Intern Med 2011;17:630-4
Physicians Reluctance on EOL care
• > 4000 physicians surveyed
• Most physicians would not discuss EOL options with
terminally ill patients who are feeling well
• They rather wait for symptoms to develop
• They may discuss prognosis when they have no more
treatment to offer
• They do not discuss sites of death (that would
respect patient’s preferences)

Keating NL et al. Cancer 2010;116:998-1006
Timing of EOL discussions
• A majority (55%) of patients with cancer at MD
Anderson did not access PC before they died
• PC at 1.4 month before death
• 55% EOL-care discussions occurred in the hospital
• Oncologists documented EOL-care discussions with
only 27% of patients
• Among 959 patients with documented EOL-care
discussions who died during follow-up, discussions
took place a median of 33 days before death
Hui D et al. 2012;17:1574-80

Mack J et al. Ann Intern Med 2012;156:204-10
Other Barriers to EOL Discussions
• Most physicians lack knowledge or insight into a
meaningful discussion about prognosis
• Misinterpretation of what patients/surrogates want
• Fear of judgment
• Perfect is sometimes the enemy of the good
• Most surrogates want physicians to disclose
prognostic estimates even if they cannot be certain
of their accuracy
Evans LR et al. Am J Resp Crit Care Med 2009:179:48-53
Web-based Prognostic Tools
• http://www.eperc.mcw.edu/EPERC/Search?Search_Key
words=Prognosis%20CHF&q=Prognosis

http://www.eperc.mcw.edu/EPERC/FastFactsandConcepts
Prognostication
• http://www.eperc.mcw.edu/EPERC/FastFactsIndex/ff_0
13.htm
• Malignant hypercalcemia: 8 weeks, except newly
diagnosed breast cancer or myeloma (Fast Fact #151)
• Malignant pericardial effusion: 8 weeks (Fast Fact #209)
• Carcinomatous meningitis: 8-12 weeks (Fast Fact #135)
• Multiple brain metastases: 1-2 months without
radiation; 3-6 months with radiation.
• Malignant ascites (Fast Fact #176), malignant pleural
effusion, or malignant bowel obstruction: < 6 months.
http://www.eperc.mcw.edu/EPERC/FastFactsandConcepts
Data from MSKCC
• Identification of poor prognostic factors among patients
requiring mechanical ventilation after HSCT

Bach et al. Blood 2001
Accuracy of Prognosis
• Estimate of survival time in individual patients
with cancer can be accurate

Glare P A et al. JCO 2013;31:3565-3571
Cardiac Arrest
• OHCA carries 92% mortality
• CPR in hospitalized patients
• ROSC: 44%
• Alive at hospital discharge: 17%

• CPR in ICU patients
• Hospital survival: 15.9%
• VP, MV, and age > 65 y (worse outcome)

• CPR in patients with cancer
• Survival: 10.1% for general medical/surgical wards
• 2.2% in ICU
Roger VL et al. Ciculation 2011;123:e18-209

Tian J et al. Am J Respir Crit Care Med 2010;182:501-6

Peberdy MA et al. Resuscitation 2003;58:297-308

Reisfield GM et al. Resuscitation 2006;71:152-60
Place of Death: QOL and Caregiver MH
• Prospective, longitudinal study of terminally ill
patients with cancer and their caregivers at
•
•
•
•
•
•
•

Yale Cancer Center
West Haven VA CT Comprehensive Cancer Clinic
Simmons Comprehensive Cancer Center
Parkland Hospital
MSKCC
Dana-Farber
New Hampshire Oncology-Hematology

• Study population: 342 dyads
• Hospital deaths associated with prolonged grief
• ICU deaths associated with higher risk of PTSD
Wright AA et al. J Clin Oncol 2010;28:4457-4464
EOL Discussions and Outcomes
• 325 patients from 8 sites
• 68% received EOL care consistent with thir
preferences
• Patients more likely to receive EOL care consistent
with preferences if wishes were discussed with
physicians
• Distress lower among patients who received no lifeextending measures and their caregivers

Mack JW et al. J Clin Oncol 2010;28:1203-1208
Domains of EOL Discussions in ICU
•
•
•
•
•
•
•
•

Communication
Seek patient’s preferences
Support to family/surrogate
Spiritual needs
Relief of symptoms
Support caregiver grieving (SW + Psychiatry)
Use of available resources
EOL care after death
Benefits of PC-ICU
Outcome

Selected Relevant Studies

↓ Intensive care unit/hospital length of stay

Campbell et al; Norton et al; Curtis et al

↓ Use of nonbeneficial treatments

Campbell et al; O’Mahony et al; Pierucci et al

↓ Duration of mechanical ventilation

Payen et al

↑ Family satisfaction/comprehension

Azoulay et al

↓ Family anxiety/depression, PTSD

Lautrette et al

↓ Conflict over goals of care

Lilly et al

↓ Time from poor prognosis to comfort-focused goals Campbell et al
↑ Symptom assessment/patient comfort
Nelson et al. Crit Care Med 2010;38:1765-1772

Erdek and Pronovost ; Chanques et al
Nelson et al. Crit Care Med 2010;38:1765-1772
ICU Trial
• Lecuyer et al Crit Care Med 2007
Recommendations
•
•
•
•

Would I be surprised if the patient dies in < 1 y?
EOL Discussion in clinic or on admission
Inquire about patient’s preferences
Include surrogate or agent with patient’s
permission

• Shared decision making process
• Discuss options
Recommendations
•
•
•
•

Manage patient/surrogate expectations
Prepare them for the unexpected
Have a broader perspective on cancer care
ICU trial

• Better training of healthcare providers on EOL
discussion
• Ask for assistance

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Disucssion on EOL care and prognosis

  • 1. Discussion on EOL Care and Prognosis Louis Voigt, MD March 2014
  • 2. Disease-specific Mortality Rates in USA Total Number of Deaths 800,000 700,000 600,000 500,000 400,000 300,000 200,000 100,000 0 US Census Bureau 2010 Total Number of Deaths
  • 3. Death and Dying • 20% sudden death • MI • Trauma • PE • 80% death from chronic illnesses • Cardiovascular diseases • Cancer • COPD
  • 4. Disease and Death Trajectories Murray SA et al: BMJ 2005;330:1007-11
  • 5. Where do People Die? • • • • • National Mortality Followback Survey (NMFS) 10,122 deaths analyzed in 1993 58% patients died in Hospital 22% died at home 20% in Nursing Home Teno JM et al. Med Care 2003;41:323-35
  • 6. Deaths in ICU • • • • • 552,157 deaths in 1999 in FL, MA, NJ, NY, VA, WA 38.3% of deaths in hospitals 22.4% of deaths after ICU admission Death in ICU after a median LOS of 12.9 days Cost: $24,541.00 Angus DC et al. Crit Care Med 2004;32:638-43
  • 7. ICU use in Last Month of Life • Were these patients offered the opportunity to discuss their preferences? Teno JM et al. JAMA 2013;309:3470-477
  • 8. Discomfort and Lack of Training • Medical oncologists do not routinely discuss prognosis • Survey of 729 MD Oncologists • 73% admitted that training on prognosis communication was lacking • 96% believed that such education should be part of cancer care training • Physicians caring for advanced cancers • Provide frank estimate 37% • No estimate or inaccurate estimate (consciously) 63% • Physicians tend to make different treatment recommendations to their patients than they would choose for themselves Daugherty CK et al. J Clin Oncol 2008;26:5988-93 Lamont EB et al. Ann Intern Med 2001;134:1096-105 Ubel PA et al. Arch Intern Med 2011;17:630-4
  • 9. Physicians Reluctance on EOL care • > 4000 physicians surveyed • Most physicians would not discuss EOL options with terminally ill patients who are feeling well • They rather wait for symptoms to develop • They may discuss prognosis when they have no more treatment to offer • They do not discuss sites of death (that would respect patient’s preferences) Keating NL et al. Cancer 2010;116:998-1006
  • 10. Timing of EOL discussions • A majority (55%) of patients with cancer at MD Anderson did not access PC before they died • PC at 1.4 month before death • 55% EOL-care discussions occurred in the hospital • Oncologists documented EOL-care discussions with only 27% of patients • Among 959 patients with documented EOL-care discussions who died during follow-up, discussions took place a median of 33 days before death Hui D et al. 2012;17:1574-80 Mack J et al. Ann Intern Med 2012;156:204-10
  • 11. Other Barriers to EOL Discussions • Most physicians lack knowledge or insight into a meaningful discussion about prognosis • Misinterpretation of what patients/surrogates want • Fear of judgment • Perfect is sometimes the enemy of the good • Most surrogates want physicians to disclose prognostic estimates even if they cannot be certain of their accuracy Evans LR et al. Am J Resp Crit Care Med 2009:179:48-53
  • 12. Web-based Prognostic Tools • http://www.eperc.mcw.edu/EPERC/Search?Search_Key words=Prognosis%20CHF&q=Prognosis http://www.eperc.mcw.edu/EPERC/FastFactsandConcepts
  • 13. Prognostication • http://www.eperc.mcw.edu/EPERC/FastFactsIndex/ff_0 13.htm • Malignant hypercalcemia: 8 weeks, except newly diagnosed breast cancer or myeloma (Fast Fact #151) • Malignant pericardial effusion: 8 weeks (Fast Fact #209) • Carcinomatous meningitis: 8-12 weeks (Fast Fact #135) • Multiple brain metastases: 1-2 months without radiation; 3-6 months with radiation. • Malignant ascites (Fast Fact #176), malignant pleural effusion, or malignant bowel obstruction: < 6 months. http://www.eperc.mcw.edu/EPERC/FastFactsandConcepts
  • 14. Data from MSKCC • Identification of poor prognostic factors among patients requiring mechanical ventilation after HSCT Bach et al. Blood 2001
  • 15. Accuracy of Prognosis • Estimate of survival time in individual patients with cancer can be accurate Glare P A et al. JCO 2013;31:3565-3571
  • 16. Cardiac Arrest • OHCA carries 92% mortality • CPR in hospitalized patients • ROSC: 44% • Alive at hospital discharge: 17% • CPR in ICU patients • Hospital survival: 15.9% • VP, MV, and age > 65 y (worse outcome) • CPR in patients with cancer • Survival: 10.1% for general medical/surgical wards • 2.2% in ICU Roger VL et al. Ciculation 2011;123:e18-209 Tian J et al. Am J Respir Crit Care Med 2010;182:501-6 Peberdy MA et al. Resuscitation 2003;58:297-308 Reisfield GM et al. Resuscitation 2006;71:152-60
  • 17. Place of Death: QOL and Caregiver MH • Prospective, longitudinal study of terminally ill patients with cancer and their caregivers at • • • • • • • Yale Cancer Center West Haven VA CT Comprehensive Cancer Clinic Simmons Comprehensive Cancer Center Parkland Hospital MSKCC Dana-Farber New Hampshire Oncology-Hematology • Study population: 342 dyads • Hospital deaths associated with prolonged grief • ICU deaths associated with higher risk of PTSD Wright AA et al. J Clin Oncol 2010;28:4457-4464
  • 18. EOL Discussions and Outcomes • 325 patients from 8 sites • 68% received EOL care consistent with thir preferences • Patients more likely to receive EOL care consistent with preferences if wishes were discussed with physicians • Distress lower among patients who received no lifeextending measures and their caregivers Mack JW et al. J Clin Oncol 2010;28:1203-1208
  • 19. Domains of EOL Discussions in ICU • • • • • • • • Communication Seek patient’s preferences Support to family/surrogate Spiritual needs Relief of symptoms Support caregiver grieving (SW + Psychiatry) Use of available resources EOL care after death
  • 20. Benefits of PC-ICU Outcome Selected Relevant Studies ↓ Intensive care unit/hospital length of stay Campbell et al; Norton et al; Curtis et al ↓ Use of nonbeneficial treatments Campbell et al; O’Mahony et al; Pierucci et al ↓ Duration of mechanical ventilation Payen et al ↑ Family satisfaction/comprehension Azoulay et al ↓ Family anxiety/depression, PTSD Lautrette et al ↓ Conflict over goals of care Lilly et al ↓ Time from poor prognosis to comfort-focused goals Campbell et al ↑ Symptom assessment/patient comfort Nelson et al. Crit Care Med 2010;38:1765-1772 Erdek and Pronovost ; Chanques et al
  • 21. Nelson et al. Crit Care Med 2010;38:1765-1772
  • 22. ICU Trial • Lecuyer et al Crit Care Med 2007
  • 23. Recommendations • • • • Would I be surprised if the patient dies in < 1 y? EOL Discussion in clinic or on admission Inquire about patient’s preferences Include surrogate or agent with patient’s permission • Shared decision making process • Discuss options
  • 24. Recommendations • • • • Manage patient/surrogate expectations Prepare them for the unexpected Have a broader perspective on cancer care ICU trial • Better training of healthcare providers on EOL discussion • Ask for assistance