End of Life Decisions:

2015 Evidence Based

Update

Steven Miles, MD; University of Minnesota 2/9/15

 Conflict of Interest
Disclosure

The speaker does not have any personal, institutional or financial

relationship with any health care lobbying or industry organization.
I do not take honorariums from or represent the position of such
groups.
We are all mortal.

1820 Chovin MERIAN - Memento Mori-

Physician.
 English
Studies/trials
MetaAnalysis
Adult
Usable studies
Terminal Care
Hospice
300
Palliative Care Physician Patient Relations
Euthanasia-Passive Attitude of Health Personnel
Withholding Treatment Ethics, Medical or Nursing
Population groups (race, ethnicity)
Resuscitation Orders Patient participation
Informed consent 42,000
83,000 Decision making
Social Work
Religion (all)

Hypothetical Vignettes
I favor N>200, multicenter, N <50

multivariate-corrected studies.
Most studies more than 10
years are discarded.
 OVERVIEW

Epidemiology of end of life decisions

Physician Factors
Patient Religion and Values
Family Factors
Clinician-patient-family communication
Ethics Consultation
Grief
Epidemiology of End of Life
Decisions
 What % of US deaths are preceded by
withholding or withdrawing life-sustaining
treatment?

1. Less than 20%

2. Less than 40%
3. About half
4. 60 to 80%
5. More than 80%
 How Common are Limited
Treatment Plans at the End of
Life?
2.4 Million US deaths/ year.
~2.1 Million deaths under health care.
Excludes homicides, car accidents, etc.
~1.8 Million deaths/ year under a plan that
includes decisions to withhold or withdraw
life-sustaining treatment.
Court involvement/legal risks are small.
Since 1976: ~150 appellate court decisions,
two criminal cases (excluding euthanasia).
The Moral and Legal Consensus on
Choices about Life Supporting
Treatments
Patients have a right to refuse any medical
treatment regardless of whether they are
"terminal" or curable.
There is no difference between
stopping a treatment or

not starting or

using for a trial and then stopping it if is not

not benefiting a patient.

Decisionally incapable persons do not lose the
right to have any treatment decision made.
Tube feedings are a life-sustaining treatment.
Medicare Site of Death.

Average age of 286,000 decedents is 81.9. 42%

enrolled in hospice. JAMA 2013;209:470
Hospital Practice Variation
Standardized early DNR rates vary.
Lower in Non-profit hospitals 8.6 v 14.6%.
Lower in large hospitals 11.1 v 15%.
Lower in teaching hosp 9.5 v 13.7%.
Lower in urban hospitals 12 v 26%.
Acad Emerg Med 2013;20:381-7. 367 hospitals, Califor, 9.5 million pts >
65, 22-2010. Multiple regression.

The difference between High end-of-life intensity and Low end- of-
life intensity hospitals is not due to more starting of life sustaining
treatment but because Low intensity hospitals propose LST as a time-
limited-trial with pre-identified clinical benchmark for withdrawing to
ensure its accountability.
Intensive Care Med 2012;38:1886-96. Two hospitals one high, one low
treatment, 173 patients over 65, interviews of 4 attendings, staff and families
 Hospital Practice Variation
Post-stroke DNR: 3.5 fold!

Stroke 2014;45:822-7. 2005-2011, >50 yo, 355

hospitals, 252,368 CVAs. DNR adjusted for severity of
 Practice variation:
Blood cancer v solid tumors

Cancer 2014;120;1572-8.
1 hosp, all pts dying of adv CA, 113 heme & 713 solid.
Clinician Death Anxiety
Clinician Death Anxiety & Terminal Care
1/3 of MDs are uncomfortable
discussing terminal care with
patients 1/10 after discussing
these issues with family.
Arch Int Med 1990:150:653-58. See also
CMAJ 2000;163:1255-9.
1990
1998
MDs with death anxiety:
Treat more aggressively.
Less tolerant of clinical
uncertainty.
Like elderly patients less.
Greater interest in specialties.
Psychol Rep1998;83:123-8.
Doctors, nurses, SWs with higher fear of death
less likely to:
Disclose prognosis P. <004
Assist in selecting proxy decisionmaker P< .
000
Collaborate with team on advance planning
P<.003
Death Studies 2007;31:563-72. N= 135, one
institution.
2007
2011
A six day HCW course in how to
face and cope with death anxiety,
Decreased burnout.
Decreased death anxiety.
Improved job satisfaction, esp in
relationships with eol patients.
J Palll Care 20111;27:287-95.
Patient and Relative Agreement
on P'ts Treatment Preferences
Family more aggressive
than patient.
Family estimate of pts
preference not
improved by living will,
improved by talk.
Arch Int Med
2001;161:421-30.
J Pain & Sympt Manag
2005;30:498-509.

What are the implications of doctors feeling more

comfortable talking with family than with the
patient?
Patients Religion
(and why it matters to MDs)
 Religion and Preferences for
Life-Prolonging Care

88%: religion somewhat/very important.

47%: spiritual needs minimally/not at all supported
by religious community
72%: spiritual needs minimally/not at all supported
by medical system.
Religiousness associated with wanting all
measures to extend life (OR 2., 95% CI=1.1-3.6).
J Clin Onc 2007;25:555-60. 230 CA pts. See also Palliat &
Supportive Care 2006; 4:407-17.
 Religious Coping* and Use of
Life-Prolonging Care

High religious coping associated with

More use of respirators (11 vs 4%; P=.04).
More intensive care during last week of
life (14 vs 4%; P=.03).
Same use of hospice (71 v 73%; P=.66).
JAMA 2009;301:1140-7. Prospective multivariate analysis, 7
hospitals across US, 345 adults with advanced cancer
followed to death, median survival 122 days.
*Religious coping: I seek Gods love and care, etc.
 How Does Spiritual Care From Medical Team
Affect Medical Care Received and EOL Quality Of
Life.
Patients whose spiritual needs were supported by medical
team received 3.5 X more hospice care compared to those
not supported (P = .003).
High religious coping patients whose spiritual needs were
supported were 5X more likely to receive hospice (P = .
004) and a fifth as likely to receive aggressive care (P = .02) in
comparison with those not supported.
Spiritual support from the medical team associated with
higher QOL near death (20.0 v 17.3, P = .007).
Spiritual support from pastoral care visits associated with
higher QOL near death (20 v 18, P = .003).
J Clin Onc 2010;28:445-52. Prospective, multisite, multivariate regression study of 343 patients
with advanced cancer. Median 116 days to death. Patient-rated support of spiritual needs by the
medical team. Measured receipt of pastoral care services.
J Clin Onc 2007;25:555-60 and J Pall Med 2006;9:646-57 have similar finding on QoL.
 Religious Support and
Intensive Care Deaths
Patients saying that religious/spiritual needs were inadequately
supported
less likely to receive a week or more of hospice (54% vs 73%; P = .01)
more likely to die in an ICU (5.1% vs 1.0%, P = .03).
Among minorities and high religious coping patients, those reporting
poorly supported religious/spiritual needs received
more ICU care (11.3% vs 1.2%, P = .03; 13.1% vs 1.6%, P = .02,
less likely to have > 1 week of hospice (43.% vs 75.3%, P = .01;
45.3% vs 73.1%, P = .007)
increased ICU deaths (11.2% vs 1.2%, P = .03 and 7.7% vs 0.6%, P
= .009).
EOL costs higher when patients said their spiritual needs were
inadequately supported ($4947 vs $2833, P = .03), particularly among
minorities ($6533 vs $2276, P = .02) and
high religious copers ($6344 vs $2431, P = .005).
Cancer 2011;117:5383-91. Prospective, multisite, 339 advanced CA patients accrued from
outpatient setting and followed until death. Spiritual care measured by patients' reports that
health team supported their spiritual needs.
An Answer?
Patients with high spiritual Among patients supported
support from religious by religious communities
communities AND receiving spiritual
support from medical team.

Less hospice More hospice use

AOR 0.37; P=.002 AOR 2.37; P =.04
More aggressive EoL Less aggressive
treatment interventions
AOR 2.62; P=.02 AOR 0.23; P=.02
More ICU deaths Fewer ICU deaths
AOR 5.22; P=.004. AOR 0.19; P=.02

JAMA Intern Med. 2013 Jun 24;173(12):1109-

17.
Who should offer religious
support?
The patients own
spiritual community is
most effective! JAMA
Inter Med
2013;173:1109017.

J Pastoral Care &

Counseling. 2013; 67(3-
4):3-. 233 consecutive
hospitalized pts received
a proposal of spiritual
support randomly by
chaplain or by nurses by
random assignment.
One hospital, single
variable.
Family Factors in
Decisionmaking
 Family ICU Distress 2001-~2005
A Focus on Milieu
More anxiety when:
Acute illness
Lack of regular MD-RN meetings
Lack of room reserved for meetings with
relatives.
Crit Care Med2001;29:1893-7. Prosp study, 43 French ICUs (6 peds), 637 pts, 920
relatives. Similar data in US, see. Crit Care Med 2008;36:1722-8.

200 2005
1 Conflict with med staff (complaints of disregarding primary
46%
caregiver in tx discussions, miscommunication, unprofessional
behavior).
48%: Valued clergy.
27%: Wanted better space for meetings.
48%: Preferred attending MD as info source.
Crit Care Med 2001;29:197-201. 6 AHC ICUs. Tape audit.
See also Chest 2005;127:1775-83.
 Family ICU Distress 2005 - 2009
A Shift to Focus on Caregiver
Psychiatry
4.5% Major Depression 27%
3.5 General Anxiety 10
8 Panic 10
4 Complicated 5
Grief/PTSD
J Clin Onc 2005;23:6899- Crit Care Med
907. 200 caregivers of 2008;36:1722-8. 1 AHC, 41
advanced CA pts . caregivers.

2005 2008
2009
2007 Patients with Advanced CA with
35% depressed Children

69% relatives had symptoms of panic disorder (OR=5.41)

anxiety. (Caregivers who saw loved
one with delirium 2X as likely to
have generalized anxiety.) (p < 0.04
after multivariate adjust).
J Pall Med 2007;10:1083-92. 200
caregivers of patients with terminal CA.) .
desire for aggressive tx vs palliative
care (OR=1.77)
advance care planning (e.g., DNR)
(OR,=0.44)
quality of life in the last week of life
(P=.007).
Spousal caregivers with dependent
children had more major depression (OR
 Family ICU Distress in ICUs 2010

57% mod to severe traumatic stress

80% borderline anxiety
70% borderline depression. PTSD: 10-19%. Depression: 14-
>80% mod to severe fatigue, sadness, 24%
fear Correlates of above
More severe symptoms: Knowing patient for shorter time
Younger age, female, and non-white relative. PTSD, P = .003 Depression, P = .04
Young patient was only variable associated with
symptom severity.
Discord between fam' DM prefs v their DM
Despite symptoms, most relatives coping
roles
at and functioning at high levels
during the ICU experience. PTSD, P=.005 Depression, P= .05
Crit Care Med 2010;38:1078-85. Prospective,
cross-sectional study, 3 ICUs at 1 AHC. 74
relatives 74 patients at high risk for dying
after ICU stay >72 hrs on vent. Chest 2010;137:280-7. Prosp, multivar, 226
families

2010
Clinician-patient-family
communication
Disclosing Prognosis
Family Meetings
 MDs Readily Provide Qualitative
Terminal News; Withhold
Quantitative Data

Qualitative info. Quantitative info.

Is it bad, doc? How long will I live?
80% want 53% want
66% ask. 66% ask for it
88% given 55% given.

20% do not want. 46% do not want

22% ask for it. 2% ask for it.
61% given!! 4% given.
Educated, sicker, fearful, and acceptance of death want more information.

Health Comm 2002;14;221-241. N=351 (a 24% return to a single

mailing of pts registered with Mich Am Can Soc. Oversamples breast
cancer.)
Quantitative Data for CPR decisions

Of patients who undergo inpatient CPR,

4 in 10 will have a return of spontaneous circulation,
1 in 10 will survive to hospital dismissal.
Of patients who are successfully resuscitated
and discharged, 1 in 4 survive more than 5
years.
(More favorable for healthy baseline status,
younger age, witnessed arrest, initial rhythm of
ventricular fibrillation, CPR <10 minutes).
The American Journal of Medicine 2010; 123:49. See also New
Engl J Med 2009;361:22-31
 The Chicago Hope Effect:
Deformed Consent
All Chicago Hope, ER, and Rescue CPRs 94-95: 67%
survive to discharge.
N Engl J Med 1996;334:1578-82.

Patients/surrogates prediction of survival following

in-hospital cardiac arrest with CPR averaged 72%
The higher the prediction of survival, the greater
the frequency of preference for full code status (P
= .012).
Chest 2011;139:802-9. Interviews of 100 patients or
their surrogates in an MICU.
19% of pts knew prognosis after CPR. When informed
of prognosis, 37% of living wills were changed.
J Crit Care 2005;20:26-34. A 325-bed hospital
82 pts with living wills on admission.
Awareness of terminal illness, discussions with
MDs and treatment plans and outcomes.

Being aware of terminal illness:

1.6 X as likely to get
preferred tx.
Discussing EOL wishes with MD:
2 X as likely to get
preferred tx.
Being aware & discuss with MD:
3.5 X as likely to get preferred tx.
(44% of pts who knew they were .003
terminally ill had no talk with
MD!)
J Clin Onc 2010;28:1203-8. 7
hospitals. 325 pts with advanced
cancer. Preferences assessed a
median of 125 days before death.
Multivariate analysis (function, survival
time, demographics, discussions,
awareness of term condition)

of Terminal Condition
 Dr: This asymptomatic pt has 4-6 months to
live.
When would you discuss hospice?
65%: discuss prognosis now.
44%: discuss DNR (Most would
wait for sx/no more tx to offer.
26%: discuss hospice.
21%: discuss site of death.
Non-cancer Mds more likely
than cancer MDs to discuss
DNR status, hospice, and
preferred site of death now (all
P < .001).
Cancer 2010;998-1006. Nat survey
4074 MDs txing CA pt. Multi var.

But oncologists say refusal of pall

care to accept chemo pts is a
barrier to referrals, so they wait. J
Clin Onc 2012;30:4380-6
Patient with less than 6 months to
live: What have you been told?
53% had discussed hospice with MD.
Patients with more severe pain, dyspnea
or a greater desire for palliative care
were
no more likely to have discussed
hospice than those with less severe
symptoms (23 v 19% p=.31)
Arch Int Med 2009;169:954-62. 1517 pt with stage IV
(metastatic) lung CA, multicenter, multivar.
What happens when a terminally ill
patient comes to a family
conference?
Patient presence was associated with
More discussions of goals of care (P=0.009)
Less communication of
prognosis and
(P=0.004)
symptoms dying patients may have (P<0.001).

Journal of Pain & Symptom Management. 2013;46:536-45. Data

collected right after 140 consecutive family conferences. 91%: solid
tumors, median age: 59 yo. Patients participated in 49% of FCs.
 Treatment, discussions and
acceptance of death
Family and pts having end
of life discussions vs those
not having discussions
Accept terminal (53 v
29% P< .001)
Value comfort over life
extension (84 v 74%
p<.001)
Against ICU death (63 v
28% P<.001)
JAMA 2008;300:1665-
73.
Number of Aggress Interventions
 End of Life Treatment Discussions
and Last Week Costs, Quality of Death, Quality of
Bereavement
End of life discussions:
Ventilation (1.6 v 11.0%)
CPR (.8 v 6.7%)
ICU admit (4.1 v 12.4%)
46% Last week $ tx. (P=.002).
No higher depression or worry.
Earlier hospice enrollment.
More Aggressive Care
Quality of life (6.4 v 4.6)
Depression in bereaved
caregivers
JAMA 2008;300:1665-73. Arch Int Med 2009;169:480-
8. US. 6-hosp prosp, longit cohort multivar. Pts with
advanced CA and their caregivers (n = 332 dyads),
2002-2008. Patients followed from to death, (median
4.4 months, caregivers 6.5 months p death). A third
had EOL discussions..
 How does patient being present
change eol care planning conferences?
More likely discussed Less likely discussed
Pts goals for tx Prognosis
97 v 83% .009 83 v 61% .004
Nutrition/hydration
62 v 47 .06
Terminal sx
44 v 16% .0003

Pain Sympt management 2013;46:536-45.

140 consecutive conf
 What is Hope-Full Disclosure?
i.e., Addressing the Paradox of How do we
Faithfully Be with a Loved One who is Dying?

Patients want doctors to

Be knowledgeable and realistic,
Offer up to date treatment (90%) (goals, continuity, not illusions,
abandonment and do-nots)
Say that pain will be controlled (87%).
Provide an opportunity to ask questions
Patients lose hope if
Doctor appears nervous or uncomfortable (91%)
Gives prognosis to family before the patient (87%)
Uses euphemisms (82%)
J Clin Onc 2005;23:1278-1288. 126 pts with metastatic cancer seeing 30
oncologists.

Focus on finding consensus on patients values rather than

on most empowered family members preference.
J Crit Care 2006;21: 294-304. 51 clinician-family ICU conferences from 4 hospitals
Family Satisfaction with EoL
Conferences
Family spoke 30%, MDs 70%
% Family speaking time correlated with
Perceived quality of MD information,
MD listening,
MD understanding of issues,
Meeting needs, and
Conflict resolution.
Crit Care Med 2004;32:1284-88. Tapes of 51 meetings with 51 families, 214
relatives, 4 hospitals, 36 MDs. 111 potential meetings, 36 families excluded
because of MD pref. 46% of approached families consented to taping. Mean
meeting time 32 min SD=15 min.
See also Arch Int Med 2004;164:1999-2004.

So, LISTEN UP!

Family meeting tips
Accommodate extended families.
Include family clergy in preference to hospital
chaplains (consider pre-contact with clergy).
Minimize staff in room.
Sit down.
Take time.
Private space.
Give a business card with your cell phone on it
when the situation is close to death.
 The intergenerational gift
between dying persons and their
caregivers.
A
dying
person
On death shows
caregiver how
to face death.

The caregivers learn

how to face death &
teach the next
generation how to care
for a dying loved one.

The next generation learns

how to care for a dying person.
Ethics Consultations
Admission ICU Goal/Prognosis
Meetings
Multidiscip conf to discuss goals, expectations,
milestones, & time frames for ICU tx. F/u to
discuss palliative care when goals not met.
Reduced LOS from (2 to 11) days to (2 to 6)
days, P>.01 [interquartile range].
Earlier access to palliative care
No increased ICU mortality.

Amer J Med 2000;109:469-75. 530 consecutive adult med ICU AHC pts.
See also Eur J Cancer 2007;43:316-22.
Mid-Course ICU Ethics
Consults
RNs could unilaterally ask for ethics consults if
they saw unaddressed ethics issues
Hospital days (-2.95, P = .01)
ICU days (-1.44, P = .03)
Vent days (-1.7 days, P = .03)
Mortality: no difference.
Consultations regarded favorably
Prosp, RCT, adult ICUs, 7 hospitals, N=551. JAMA
2003;290:1166-72.
Same as Peds/Adult ICU study Crit Care Med 2000;
28:3920-4.
 Mid-Course ICU Ethics
Consults
Mandatory ethics consultation after 96
hours of respirator treatment (v
historical control or optional ethics
consults)
More decisions to forgo life-support and
reduced LOS.
Crit Care Med 1998;26:252-9. Prospective, controlled study, N=99. Recent historical
control. Standard prompts on decisions and communication. Action strategies
suggested.
Let the RNs into the Process
RNs less likely than MDs to say
Families well informed about advantages

and limitations of further therapy

(89% vs. 99%; p < .003)
Ethics issues discussed well in the team
(59% vs. 92%; p < .0003)
Ethical issues discussed well with family
(79% vs. 91%; p < .0002)
Crit Care Med 2001;29:658-64. Cross-section survey; 31 US peds
hosp. See also Chest 2005;127:1775-83.
Summary on ICU Ethics
Consults
Mandatory or routine interventions better.
Lead to more effective use of palliative
care plans without increasing mortality.
Financial impact: Some cost savings but
primary value-added effect is by increasing
available ICU bed days by decreasing ICU use
for people who will not survive.
Health Affairs 2005;24:961-71.
Hospice enrollement
 Hospice Reduces Deaths of
Late Hospice Caregivers During First 18
Enrollment months of Widowhood

Short hospice stays (<3 days)

associated with more
depression in caregivers if the
caregiver:
has previous depression
(p<.01)
spouse of decedent (p<.01)
overwhelming caregiver
burdens (p<.04) OR .95
OR .9
Am J Geriatr Psych 2006;14:264-9. 3 yr longit.
175 family caregivers of patients with terminal
cancer who enrolled in 1 hospice 1999-2001. 13
months follow-up.

Soc Sci & Medicine 2003;57:465-75.

Risk adjusted, retro 30,838 in hospice
matched to 30,838 couples without
hospice care drawn from 200,000
sample.
Steven Miles MD

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