Transcript OVERVIEW - University of Minnesota

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.
Withholding ICU Treatment
Rationale in US for withholding treatment
from ICU pts


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
45% Imminent death
50% Quality of life
5% Disease precluded long-term survival.
19% ICU patients died, 65% of these after
withdrawing tx, 92% in ICU, 8% on ward.
 Anaesthesia 1998;53:523-8.
 See also Crit Care Med 2005;33:750-5. Observational, prospective, 4
academic and 7 community hospitals in France. Crit Care Med 1997;
25:1324-31 Retrospective cohort, 3 AHC ICUs, 419 pts deaths, 1 yr.
Mayo Clin Proc 2006;81:896-901.
Withholding Pediatric ICU Tx
Diagnoses
19% Congenital
heart disease
18% Trauma
14% Pneumonia/
sepsis
14% Anoxia/drown
9% SIDS
26% Other
Mode of death
32% Discontinue
support
26% DNR
23% Brain death
19% Failed CPR.
(58% had limited tx)

Crit Care Med
1993;21:1798-802.
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.
Physician Factors
Physician Psyschology
Disclosing Prognosis
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.
Patient Preferences on Prognosis
Qualitative info.
80% want


66% ask.
88% given
20% do not want.
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
22% ask for it.
61% given!!
Quantitative info.
53% want


66% ask for it
55% given.
46% do not want
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
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.)
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.
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.
Prognosis. Huh?
Patients and clinicians were more likely to agree that
discussions about prognosis had taken place when
patients were

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poorer (odds ratio 2.3),
nonwhite (OR 2.6), or
60 to 80 years old (OR 4.1)
compared to pts who were wealthier, white or > 80.

J Pall Med 2005;8:998-1004. USA Cross-sectional survey in
participants' homes. 214 patients >60 with serious CHF, COPD, or
CA and their primary clinicians.
In–Pt CPR Survival to Discharge
30% for pt’s with primary arrest 2o MI
10% for med ward patients.
<4% for MICU patients



Arch Int Med 1995;155:1277-80/2001;161:1751-8
J Gen Int Med 1998;13:805-16
Resuscitation 1996;33:13-7/ 2001;48:111-6.
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.
Patient Factors in Decisionmaking
Knowledge
Psychology
Values
Patients’ Knowledge of Advance Directives
93% familiar with one or more ADs.
43% claimed to have an AD;
25% of these thought their MD had a copy.
Correlation between having AD and age,
reading ability or education (all P < .001).

Am J Med 2006;119:1088.e9-13. Prospective, 508 adults, 4
academic IM clinics at four academic internal medicine
clinical sites in NY, 2004. Multivariate regression.
Patient's Views on Life Support
Affirm doctor-led patient involvement...
80-90% P'ts should be encouraged to
discuss.
60-80% P'ts should be involved.
55-70% MD's recommendation should
be important or decisive.
 J Gen Int Med 2000;15:248-55.
Many seriously ill, hospitalized adults
want others to decide for them.
78% (71% of elderly) prefer to have family
and MD decide about CPR or forgoing
treatment.
29% (22% of elderly) prefer to have their
own stated preferences followed if they lost
decision-making capacity.

J Am Geriatr Soc 2000;48(5 Suppl):S84-90. 5 AHC, 2203
seriously ill adult inpatients and 1226 older inpatients with
preferences about CPR. SUPPORT
Patient and Relative Agreement on
P'ts Treatment Preferences
Family more aggressive
than patient.
Family estimate of pt’s
preference not improved
by living will, improved by
talk.

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Arch Int Med 2001;161:42130.
J Pain & Sympt Manag
2005;30:498-509.
If you were
demented and
need an amputation to live, would
you want?
Respirator in
perm coma?
Tube Feed’g in
dementia?
Fam &
Patient
Disagree
33%
Family more
aggressive
33%
63%
24%
83%
100%
What are the implications of doctors feeling
more comfortable talking with family than with
patient?
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
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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.
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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.
Family Factors in Decisionmaking
Psychology
Values
ICU Family Stress
69% relatives had symptoms of anxiety
35% depressed
More anxiety for:

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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.
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Crit Care Med 2001;29:197-201. 6 AHC ICUs.
Audiotape audit. See also Chest 2005;127:177583.
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
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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.
Family Neonatal ICU Stress
When a baby died swiftly, it confirmed wisdom of
decision to stop tx otherwise doubts were raised.
22% had concerns about length of dying reported as
3-36 hours.
Deaths that medical teams predicted would be quick
took 1.5 to 31 hrs.

Arch Dis Childh’d:Fetal & Neonatal Ed 2001;85(1):F8-12. (Scotland) 59 sets
of parents, 3 and 13 months after death.
Efforts to improve EOL decision making did not
improve parents’ satisfaction with care of children.

Pediatric Critical Care Medicine. 5(1):40-7, 2004 Jan. USA
Working on Decisionmaking
Psychology
Values
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 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
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.
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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.
The Effect of Discussing Planning to
Forgo Life Support on Patients
Positive effects 75-80%
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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
Treatment, discussions and
acceptance of death
Number of Aggress Interventions
Qual of Life at death as est
by caregiver
7
6
5
Family and pts having
end of life discussions vs
those not having
discussions
• Accept life as terminal
4
3
(53 v 29% p .001)
• Value comfort over life
extension (84 v 74% .001)
2
1
0
1
2
3
4
JAMA 2008;300:1665-73.
• Against death in ICU (63
v 28% .001)
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
Ethics Consultations’ Effect on
Patient Care
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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 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
Palliative Care
Symptoms of New Hospice Patients
(last month of life)
Non-Hospice
Prevalence
70+% Pain
70% Dyspnea
80% Dry Mouth
80% Delirium
85% Lack of energy
Quality
Benchmarks
Pain <10%
Dyspnea <20%
Delirium ??
Agitation <10%
Onc Nurs Forum 2002;29:1421-8. See also J Pain &
Symptom Manage 2000;20:87-92. Prospective study.
N=281 hospice patients
Jump WHO’s steps?
Jump I  III did better than I
 II  III:
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
 % 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.
Palliative Care Unit Effect
Pain (7.1-4.2)
Fatigue (7.5-5.7)
Nausea (7.1-2.)
Depression (7.3-5.3)
Dyspnea (7.1-3.9)
Anxiety (7.1-5.1)
Drowsiness (7.4-6.4)
Anorexia (7.3-4.3)
Well-being (6.8-3.8)
J Pain & Sympt Manag 2005;
30:367-73. 314 hospital pts
over 7 days, all .0001.
Compliance with key practice
measures correlates with
improved clinical, LOS, and
cost outcomes.
J Pall Med 2007;10:86-98.
See also
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Cancer 2002;87:733-9.
J Clin Onc 2001;19:3884-94.
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.
Dyspnea
70% of CA patients, survival 12 weeks.
Clinical assessment is poor as the
symptom of breathlessness is poorly
correlated with hypoxia or tachypnea.
Am J Hosp Palliat Care 2000, 17:259-264.
20% obtain relief with O2, bronchodilators, parenteral opiates,
anxietyolytics. Cancer 1996;78:1314-9.
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!
Routine Hydration: Not Indicated
Hydration group (n=59):1 L or more IV per day, 1
and 3 weeks before death.
Non-hydration group (n=167).
 edema (44 v 29% .04),  ascites (29 v 8%, .001) and
 pleural effusion (15 v 5%, .016) in hydration group.
No differences in bronchial secretion, hyperactive
delirium, communication capacity, myoclonus or
bedsores.


Multi-center, prospective, observational study, 226 terminally
ill patients with less than 3 weeks to live with abdominal CA.
Ann Onc 2005;16:640-7. (Japan)
Similar to Supp Care CA 2001;9:408-19.
Terminal Fluids
Dry mouth with stomatitis, oral
breathing, opioids is ‘read’ as thirst but
not amenable to fluids. Supp Care Cancer
2001;9:177-86.
Education of family re goals/effects is
critical. Amer J Hospice & Pall Care 1999;16:509-16.
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
63% received IVs D/c’d.
95% of 66 competent pts requested
this, otherwise family did often with
Advance Directive.

J Pain & Sympt Manag 2005;30:308-19.
Prospective, 21 palliative units in Japan,
122 adult CA receiving continuous deep
midazolam or phenobarbital sedation until
death.
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.
Who undergoes terminal extubation?
20% ICU Pts
MD prediction


Survival<10% OR 3.5
Cog severe  OR 2.5
MD perception

Pt didn’t want OR
4.2
N Eng J Med 2003;349:112332. 15 adult ICUs, 11
Canada, 2 US, 1 Swed, I Aus
14% ICU pts.
 Coma Score
Subarach hem

(OR 2.4, 1.5-4)
Ischemic stroke

(OR 1.7, 1.1-2.6)
No assoc: age,
APACHE, insurance.
Crit Care Med 2001;29:1792-7.
Retrospect 2,109 nonelective
admits tx with respirators in
neuro/neurosurg ICU, 82 mos.
Terminal Extubation
43% of non-brain-dead pt extubated


Survival: 7.5 hours, 25% <1 hour,
70% < 24 hours.
Coma depth does not predict survival.
59% Agonal or Labored breathing
34% Tachypnea
68% Opiates: MS 2.5 - 20 mg/h. mean 7,
(compared to 21 mg/h in Crit Care Med 1997;25:1324-31.)
75% of relatives felt pt suffered minimally

Neurology 1999;52:1602-9. 3 yrs ColumbiaPresbyterian neuro ICU
Noninvasive Palliative Ventilation
Prospective, N=23, palliative care CA patients with resp failure
due to underlying pulmonary disease or pneumonia.
NIV improved PaO2/FiO2 and the Borg dyspnoea score (from
5.5+/-1.2 to 2.3+/-0.3). (0-10 scale)
13 (57%) patients were discharged alive

Palliat Med 2004;18:602-10. (Italy)
Prospective cohort trial, two teaching and two community
hospitals, 114 patients with respiratory failure and a DNI order.
49 (43%) survived to discharge. Persons with CHF had better
survival than those with COPD, CA, pneumonia.

Crit Care Med 2004:2002-7. (USA)
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.
Constipation
Bowel programs should be instituted on all
debilitated persons on opiates.
Fentanyl dermal maybe less constipating than MS.
Palliative Med 2000;14:111-9; J Pain & Symp Manage
1999;18:111-9.
DSS (Colace) is no better than placebo for
terminally ill persons; DCS (Surfak), psyllium,
lactulose is better.
 South Med J 1978;71:677; Pain & Sympt Management
2000;19:130-6; Alimen Pharm & Ther 1998;12:491-7.
Fenatanyl trick, cut patch in half and put under
Duoderm to individualize dosing.
Housestaff and End of Life Care
Housestaff and Terminal Care
Satisfaction with Quality of Care




Strongly related to having a DNR order AND being
treated by attending rather than a resident (p
=.01).
Weakly related to pain
Strongly related to depression.
Not related to severity of illness
 84 seriously ill medical inpatients, 2 AHCs.
 Arch Int Med 2002;162:2098-104.
Housestaff: If we won’t teach . . .
. . . they won’t
learn.
Residents never (35%) or rarely (42%) primary discussant at
family meetings to discuss forgoing life support.
The only predictor of post-rotation confidence was family
meeting involvement (p <.001).


Crit Care Med 2002;30:290-6. 5 ICUs, 62 residents. adjusted for prerotation confidence in withdrawal of life support decision-making.
Journal of Palliative Medicine. 8(2):363-71, 2005 Apr.
76% of residents thought that monthly "Death Rounds" to discuss
issues and emotions surrounding the care of dying ICU patients were
worthwhile and should be part of all ICU rotations.

J Crit Care 2005;20:20-5. Survey 97 residents at hospitals in two states.
See also: Palliative Medicine 2006;20:579-84.
See also: Academic Medicine. 81(11):1008-12, 2006
Hospice and the Hospital
Hospice and Cost/Hospitalization
MCO decedents used more hospice than persons in
fee-for-service (MA: 17 v 11%; CA: 25 v 15%.)
Hospice decedents less likely to die in hospital (MA:
11 v 43%; CA: 5 v 43%). (P<.001)
Cancer patients’ expenditures were 13% to 20%
lower if in hospice.


Arch Int Med 2002;162:1722-8. Medicare beneficiaries in
MA (n = 37 933) and CA (n = 27 685), 1996.
See also: Am J Med 2001;111:38-44. Retrospective cohort
study, five states’ NH hospice enrollees, 92-96 (n = 9202
hospice patient and 27,500 non hospice NH residents).
Serious Illness: Burden shift to
Families
•
•
•
•
•
•
•
•
34%
31%
29%
20%
12%
6%
6%
55%
Major caregiving for patient
Lost all or most of life savings
Lost major income source
Caregiver quit work
Stress impairs others in family
Move to cheaper home
Delayed medical care for others
Any of the above -JAMA;1994:1839
Informal Caregiving:
An off-the books Health Care System
$1,000
$800
$600
$400
$200
$
He
al
th
C)
US
al
H
rm
C
(In
fo
NH
Pr
of
Arnow P, Levine C, United
Hospital Fund, 1998
ar
e
$0
HC
26 million caregivers
Half give < 8 h / wk.
1/5 give 9-20 h /
wk.
1/3 give 21-40+ h
/wk.
$ Billion /year
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.
Home Care: What’s new
Low ADLs (Karnofsky) and high MD visits correlated
with home death (odds ratio, respectively, 2.1 and
3.1).

J Pain & Sympt Manage 2005;30:528-35. France
Satisfaction and death at home (80%) were greater
in families with hospice than without 21%.

J Pain & Sympt Manage 2005;30:70-4. (Israel) 76
caregivers of patients who died in the home hospice and 83
caregivers of patients who died with no hospice. access to a
home palliative care program.
Teaching Coping Skills
3 group RCT, 354 family caregivers of community
dwelling hospice patients with advanced cancer.



Control group standard hospice care
Standard hospice care plus three supportive visits
Intervention hospice care plus 3 visits to teach coping skills
RESULTS: At 30-day follow-up, relative to two groups
the coping skills intervention



Improved caregiver QOL (P = 0.03)
Improved burden of patient symptoms (P < 0.001)
Improved caregiving task burden ( P= 0.038)
No group showed significant change in caregiving
mastery, problem-focused or emotion-focused
coping.

Cancer 2006;106:214-22. (See J Pain & Symp Management
2005;30:329-41.
Steven Miles MD
Slides available
[email protected]