Download End of Life Care - Public Health and Social Justice

End of Life Care:
2009 Empirical Update
Steven Miles, MD
Center for Bioethics
Department of Medicine
University of Minnesota
What % of US deaths are preceded by withholding
or withdrawing life-sustaining treatment?
1.
2.
3.
4.
5.
Less than 20%
Less than 40%
About half
60 to 80%
More than 80%
Forgoing Treatment
at the End of Life
2.2 Million US deaths/ year.
2.0 Million deaths under health care.

Excludes homicides, car accidents, etc.
1.8 Million deaths after decisions to withhold
or withdraw life-sustaining treatment.
Court involvement/legal risks are small.

Since 1976: 60-80 appellate court decisions, two
criminal cases (excluding euthanasia).
The Moral and Legal Consensus on
Choices about Life Supporting Treatments
Patients have the right to refuse any medical
treatment regardless of whether they are "terminal"
or “curable.”
There is no difference between



not starting or
stopping a treatment 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.
Medical Care for Old in Last Year of Life
Last year of life
M'care $1000/yr

11% USA health $
30

27% M’care costs (flat x20y)
25

Health Aff 2001;20:188-95.
20
Universal use of
Advance directives
 Hospice care
 Futility guidelines
would reduce medical costs 3.5%.

NEJM 1993:1092
% using ICU
15
10
5
0
65-74
75-74
85+
JAMA 2001;2861349-55.
Practice Variations
Identify problems with care.
Identify educational needs.
ICU Practice Variation
4-79% (23%) received full tx + failed CPR.
0-83% (22%) received full tx without CPR.
0-67% (10%) had life support withheld.
0-79% (38%) had life support withdrawn.
Variation unrelated to ICU or hospital type,
number of admits, or ICU mortality.
 131 ICU, 110 hosp, 38 states, 5,910 non-brain dead pts.
Amer J Resp Crit Care Med 1998;158:1163-7.
 Similar variations across Europe. JAMA 2003;290:790-7
and Canada Chest 2000;118:1424-30.
MD Death Anxiety and Terminal Care
MDs with  death anxiety
 Treat more aggressively
 Less tolerant of clinical uncertainty
 Less like caring for elderly patients
 Greater interest in medical specialties
1/3 of MDs are uncomfortable discussing terminal care with
patients -- 1/10 after discussing these issues with family.
Arch Int Med 1990:653 Psychol Rep 1998;83:123-8.
Neonatologists with more fear of being destroyed said that
palliative care and allowing to die of seriously ill or disabled
newborns was unacceptable.

Archives of Disease in Childhood Fetal & Neonatal Edition 2007;
92:F104-7.
Clinician-patient-family issues
Decision makers
Prognosis
Quality of Life
Family stress
Ethics consultation
Patient and Relative Agreement on
P'ts Treatment Preferences
Family more
aggressive than
patient.
Family estimates
unimproved by
living will,
improved by talk.


Arch Int Med 2001;
161:421-30.
J Pain & Sympt Manag
2005;30:498-509.
Fam &
Family
Patient
more
Disagree aggressive
Amputation
33%
100%
in Dementia
Respirator
33%
63%
in Perm
coma
Tube Feed’g
24%
83%
in Dementia
Nurses not more accurate than family.
N=1767 Image 1997;29:229-35.
Circulation 1998;98:648-55.
Economic Hardship and
Preferences for Life-Prolonging Care
Seriously ill & > 65
24% loss of most or
all of family savings
11% change in
major family plans
27% with either
have economic
hardship.
Odds-ratio for desire to
avoid life-prolonging
care
• Econ. hardship 1.3
 Pain 1.3
 Age 1.3 (per decade)
 Depression 1.5
Arch Int Med 1996:156:1737
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.
Spiritual support by religious communities or medical
system associated with Quality of Life (P = .0003).
Religiousness associated with wanting all measures
to extend life (OR 2.0 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 level of religious coping compared
to low was 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 mulitvariate analysis at 7 hospitals across US of 345 adults with
advanced cancer followed to death, median survival 122 days.
Religious coping: I seek God’s love and care, etc.
Disclosing Prognosis
97% of pts, MDs were able to prognose.
23% of MDs said they would not tell pt.
37% would tell pt.
40% would tell a different prognosis, (70% of
these were longer)
Older MDs and less confident MDs favored
less disclosure.

Ann Int Med 2001;134:1096-105. Prospective,
326 cancer, hospice pts.
Patient Preferences on Prognosis
Qualitative info.
80% want


66% ask.
88% given
20% do not want.


22% ask for it.
61% given!!
Quantitative info.
53% want


66% ask for it
55% given.
46% do not want


2% ask for it.
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.)
Physicians and Prognosis
100%
• 26 of 37 patients were
given no information
about prognosis for
palliative cancer
chemotherapy.
• 11 were given vague
references (e.g. buy you
some time, a few
months extra)
80%
60%
40%
20%
0%
Don’t be
specific
Pts
Its
expect stresses
too much
me
certainty
I'll wait
until I'm
asked
•
BMJ 2008;337:a752. UK.
Prospective, recordings, 37 patients
with incurable cancer, 9 MDs, one
hospital.
Ann Int Med 2001;134:1096-105.
Prognosis for Newly Admitted Hospice Patients
MDs overestimate survival by 5.3 fold
20% of prognoses were within 33% of survival
63% were over optimistic
17% were over pessimistic.

Ann Int Med 2001;134:1096-105. Prospective,5 outpatient
hospices, 343 MDs, 468 terminally ill patients on admit, median
survival: 24 days.
MDs in upper quartile of practice experience are
the most accurate

BMJ 2003;327;195-200. BMJ 2000;320: 469-73.
These errors occur during the time when most
hospice, DNR, etc decisions are made.
The “Chicago Hope” Effect
Public: discharge after
hospital CPR is 65%.
 Acad Emerg Med
2000;7:48-53 N=269
Elderly: discharge after
hospital CPR is 62%
 41% for NH residents
 40% in severe infection
 28% in metastatic CA.
 Arch Int Med 1992;152:
578-82. N 248.
All Chicago Hope,
ER, and Rescue
CPRs 94-95: 67%
survive to discharge
N Engl J Med 996;334:157882.
The Physician-Family Relationship
Family stress
Ethics consultations
ICU Family Stress
69% relatives had symptoms of anxiety
35% depressed
More anxiety for:



Acute illness
Absence of regular MD-RN meetings,
Lack of room reserved for meetings with
relatives.
Crit Care Med 2001;29:1893-7. Prospective study, 43 French
ICUs (6 peds), 637 pts, 920 relatives.
ICU Family Stress
46% Conflict with med staff (disregarding the
primary 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.
Audiotape audit. See also Chest 2005;127:177583.
Stuttered Withdrawal Works Best
% Change in Family Sastifaction
The best ICU experience is
withdrawal over 2 days
 Dialysis, then
 Hydration then
 Tube feeding then
 Pressors then
 Lab tests then
 Respirator
Intubated
Extubated
70
60
50
40
30
20
P.009
P.01
10
0
Sat with Tx
Am J Resp Crit Care Med 2008;178:798-804. 15 hospitals, 584 patients
Sat with
Decisionmaking
MDs, RNs and Families
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

Ethical issues discussed well with family
(59% vs. 92%; p < .0003)
(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.
Facing the Parodox With Caregivers
How do we remain faithful as we let go
of a loved one who is dying.
This is why so many discussions of DoNot orders break down.


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Offer Goals, not limits.
Offer Alternatives, not this or nothing.
Offer Continuity, not abandonment.
The intergenerational gift between
dying persons and their caregivers.
On death
A
dying
person 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.
Family Coping Skills Training
At 30-days, coping skills teaching:



 caregiver QOL P = 0.03)
 burden of pt’ sx (P < 0.001)
 caregiving burden P = 0.04)
than did the other two groups.
Cancer 2006;106:214-22. 3 group RCT, 354 relatives
of home hospice pt’s. Standard care v standard +
three supportive visits v standard + 3 visits to teach
coping skills.
Family Satisfaction with EoL Conferences
Mean meeting time 32 min SD=15 min).
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.
Similar to study showng that understanding is poor and
improves with longer meetings. J en In Med 1995;10:436442.
Family meeting tips
Be inclusive of large families
Be inclusive of family clergy in
preference to hospital chaplains
(consider pre-contact with clergy)
Minimize staff in room.
Sit down
Take time
Private space
Ethics Consultation etc
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
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
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

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 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
28:3920-4.
Crit Care Med 2000;
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.
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 saving effect but
primary value-added effect is increasing
available ICU bed days by decreasing ICU use
for non-survivors.

Health Affairs. 24(4):961-71, 2005
The Effect of Discussing Planning to
Forgo Life Support on Patients
Positive effects 75-80%



Increase sense of control, relief, enhance life
satisfaction, sense of being cared for.
Decrease depression for internal controlled
persons
Positive effects are very long lasting
Negative effects 10-15%:

Upsetting, saddening, resignation, fear about
health.

J Gen Int Med 1988;322 Arch Int Med;146:1613
1990;150:653 1992;152:2317
Palliative Care
Benchmarks
Narcotics
Terminal Sedation
Agonal patients
Jump WHO’s steps?
Jump I  III did better than I
 II  III:


 % days with worst pain <
.01.
Supp Care in Cancer 2005;13: 88894, 54 adults, advanced CA,
randomized, followed 90 days.
Jump to 0 to III: Fewer tx
changes, greater  in pain, 
satisfaction (P=.04).
No difference: QoL or
performance. No tolerance.

J Pain & Sympt Manag 2004;
27:409-16. 100 CA pts with mildmoderate pain.
Opioid Escalation
Rapid opioid titration monitored 20 days.
Pain adequately controlled and opioid
doses stable in 40 h.
Drowsiness, constipation and dry mouth
, then flat then drowsiness .


Euro J Pain 2006;10:153-9.
See also Pain 2005;117:388-95.
To O2 or not to O2?
All pts improved with either
intervention, hypoxic pts did not have
greater improvement even if O2 sat
corrected!
J Pain & Sympt Manage 2006;32:54150. RCT, double blind, dyspneic CA,
N=51, O2 by prongs v air.
Bronchial Secretions
Bronchial secretions in 41%
Oral/bronchial suctioning with distress in 9%
Severe bronchial secretions in 4%.
Etiologies of bronchial secretions:

Primary lung CA, pneumonia, and dysphagia.
No significant effects of severity of peripheral edema
or pleural effusion on incidence or severity of
bronchial secretions.

J Pain & Sympt Manag 2004;27:533-9. (Japan) Multicenter,
prospective, observational study, regression analysis, 310
patients in last three weeks of life.
Terminal Breathing Anomalies
Noisy Breathing: “Death rattle”
 Scopolamine
 Benadryl
Cheynes-Stokes (periodic) breathing
 Prospective family counseling to reassure
that this is not dyspnea.
These distress caregivers: EDUCATE!
Palliative (Terminal) Sedation
Using high sedative doses to the point of
causing unconsciousness to relieve
extremes of physical distress.
Supreme Court seems supportive.
ACP-ASIM Consensus Panel. Ann Int Med
2000;132:408-14.
Palliative Sedation
Sedation given to 75% of pts during
withhold/withdraw life support. (Not for
comatose pts)
>85% to decrease pain, anxiety
76% to decrease air hunger
82% to comfort families
39% to hasten death
Equivs: 10 mg/h diazepam, 11 mg/h MS.
Drug doses not associated with survival.
Prospective, 2 hospitals, 1 year. JAMA 1992;949-53.
See also Chest 2000;118:1424-30.
J Pain & Sympt Manag 2006;32:532-40.
Palliative Sedation: Family Views
69% of patients very distressed before sedation.
55% of patients asked for sedation
78% of the families satisfied with the treatment
 Low satisfaction: poor sedative palliation, insufficient information,
concerns that sedation shortened life, and feelings that there were
other ways to relieve symptoms.
25% expressed a high level of emotional distress.
 Associated with poor sedative palliation, feeling burden by the
decision, unprepared for changes in the patient's condition, or that
physicians and nurses were insufficiently compassionate, and
shorter interval to patient death.

J Pain & Sympt Manag 2004;28:557-65. (Japan) Multicenter questionnaire, 280
bereaved families of cancer patients who received sedation in 7 palliative care units in
Japan. 185 responses.
Palliative Sedation
Palliative sedation alleviated symptoms in 83%.
Median time to one continuous hour of deep sedation was 60
minutes, 49% of patients awakened once after falling into deep
sedation.
Resp rates did not decrease after sedation (18 to 16+/- 9/min)
But respiratory and/or circulatory suppression (resp </= 8/min,
sbp </= 60 or 50%+ reduction) occurred in 20%, with fatal
outcomes in 4%. This was more common in patients receiving
sedation for delirium / agitation.
No differences in clinical variable or initial sedative dose.

J Pain & Sympt Manag 2005:320-8. (Japan) Multicenter, prospective,
observational study, 102 consecutive adult cancer patients receiving
continuous deep sedation.
Sedation and Extubation
Ventilators withdrawn from 155/206 (75%) patients;
97/155 died after extubation and 58/155 died with
airway in place.
Drugs in 4 hours before death were:



Morphine 119/206, 24 mg, (2-450 mg)
Midazolam 45/206, 24 mg, (2-380 mg)
Lorazepam 35/206, 4 mg, (1-80 mg).
Drug dose not associated with time to death.
Family members indicated that patients were
perceived to be either totally (37%), very (24%), or
mostly comfortable (29%).

Can J Anaesthesia 2004;51:623-30. Prospective, cohort study in 6
academic ICUs, 206 ventilator patients (length of stay > or= 2 d).
Relative ssessed patient comfort and eol care.
Depression in Terminal Illness
Traditional scores using role or status loss, anhedonia over
diagnose. J Pain & Sympt Man 2001;22:990-6.
12% had major DSM disorder
28% had used mental health intervention since CA diagnosis.
90% were willing to receive MH treatment but 55% had not
done so.

Cancer 2005;104:2872-81. Cross-sectional, multi-institutional
study, 251 adults with advanced cancer, primary therapy failure,
nonpaid caregiver.
Major depression in 27%.
Patients with depression rated CA symptoms as more severe
than nondepressed patients. (P < 0.01)

Pall Med 2004;18:558-63. (UK) 74 adult CA patients with ECOG
performance status ranging from ambulatory and unable to work to
moderately severely limited activities.
Hospice Reduces Deaths of Caregivers
During First 18 months of Widowhood
14%
12%
10%
Hosice
No Hospice
8%
OR .95
6%
4%
2%
OR .9
0%
Women
Men
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
Slides available
[email protected]