Transcript No Slide Title

Delivering Palliative Care
to End-Stage Renal Disease Patients
Alvin H. Moss, MD
Center for Health Ethics and Law
Section of Nephrology
West Virginia University
1
Objectives
At the completion of this call, participants should be able to:



Describe the special relevance of end-of-life care for chronic
kidney failure patients ;
Explain the barriers to making end-of-life care more
available to chronic kidney disease patients; and
Discuss the recommendations of the Robert Wood Johnson
Foundation Promoting Excellence ESRD Peer Work for
improving end-of-life care for dialysis patients.
2
ESRD End-of-Life Demographics
 Rising
median age of dialysis population
48% > 65 yrs old
 Over 72,000 dialysis patients die per year
 ~20% die after decision to withdraw
 High percentage with comorbidities
 High in-hospital death (61% in one study)
 Unknown but low % die with hospice
3
ESRD Peer Work Group
of Robert Wood Johnson Foundation
“Most patients with ESRD, especially those who
are not candidates for renal transplantation, have a
significantly shortened life expectancy.”
4
Expected Remaining Years of Life
For 1996 Dialysis Populations
Age
20-24
30-34
40-44
50-54
60-64
70-74
85+
Black
Male
16.8
12.7
10
7.3
5.2
3.5
2.1
Black
Female
15.9
12.5
9.8
7.1
5.3
3.7
2
White
Male
14
9.4
6.9
5.2
3.7
2.7
1.7
White
Female
13
9.3
7.1
5.2
3.9
2.9
1.7 5
ESRD Patient Probability of Survival
Patient Population
1-yr for all incident patients, unadjusted
1-yr for incident patients >65 yrs, unadjust
2-yr for all incident patients, unadjusted
2-yr for all incident patients >65 yrs, unadj
5-yr for all incident patients, unadjusted
Survival (%)
78
66
63
48
33
5-yr for incident patients >65 yrs, unadj
10-yr for all incident patients, unadjusted
10-yr for incident patients >65 yrs, unadj
USRDS, 2002 Annual Data Report
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9
3
6
USRDS 1995 -- Life Expectancy Among
Selected Chronic Diseases
30
29.9
25
21.6
20
est remaining
15
yrs
10
9.6
6.9
5
9.8
5.3
2.6
2.7
US residents
colon cancer
ESRD
lung cancer
0
45-54
55-64
patient age
7
Expected remaining lifetimes in patients with
increasing morbidity, by age
Exp. remaining lifetime (yrs)
figure 9.25, chronic kidney disease & diabetes,
prevalent dialysis patients, 2000
Dialysis
General Medicare: CKD, DM
General Medicare: CKD, NDM
General Medicare: No CKD, DM
General Medicare: No CKD, NDM
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15
10
5
0
65-74
75-84
85+
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Frequency of Death in Dialysis Units
 Average
of 17 deaths per dialysis unit/yr
 78% of units withdrew at least 1 patient (1990)
 Mean # withdrawn: 3 (0-20)
 Most nephrologists withdraw at least one
patient/yr
 Mean # withdrawn/nephrologist/yr: 3 (0-10)
(1995)
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Reasons for Withdrawal
 Unacceptable
quality of life (failure to
thrive)
 Acute complication
 Dementia
 Stroke
 Cancer
 Other
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Symptoms during Last 24 Hours
N=79
Symptom
Pain
Agitation
Myoclonus/twitching
Dyspnea/agonal breathing
Fever
Diarrhea
Dysphagia
Nausea
% present
42
30
28
25
20
14
14
13
Cohen et al. AJKD, 2000;36:140-144
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Barriers
Lack of education, especially of nephrologists
 Unwillingness of dialysis corporations to respect
dialysis patients’ preference for DNR order
 Patient/family denial of permanent nature of ESRD
 Lack of patient awareness of life-limiting nature of
ESRD resulting in many not wanting to discuss endof-life issues

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RPA/ASN Statement on Quality Care at
the End of Life
6. Nephrologists should explicitly include in their
advance care planning…information about the
outcomes of CPR for patients with ESRD and a
discussion of patients’ preferences regarding CPR if
cardiac arrest were to occur while patients are
undergoing …dialysis… The RPA/ASN encourages
dialysis facilities to develop policies and procedures
for respecting the wishes of dialysis patients with
regard to CPR in … the dialysis unit.
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Robert Wood Johnson Foundation
ESRD Peer Workgroup
Recommendations to the Field
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Methodology
of the Education Subgroup



A review of the literature, including identification of
articles, book chapters, and the extensive evidencedbased literature search by the RPA/ASN committee
that drafted “Shared Decision-Making in the
Appropriate Initiation of and Withdrawal from
Dialysis;”
Consensus among the group based on expert opinion;
Informal surveys of nephrology colleagues and of the
nephrology training programs; and
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Findings
of the Education Subgroup




A lack of ESRD specific books or chapters on
palliative care
A gap in the curriculum for nephrology training
programs
A culture of denial in dialysis units among
nephrologists, staff, patients and families
The need for a modification of the EPEC
program for nephrologists
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Survey Results
Second Year Nephrology Fellows
Assessment of Medical Education
in End-of-Life Care
Survey conducted April 2002
173 fellows participated
63% response rate
17
Demographics
Nephrology fellows compared to other specialties
Geriatrics
Critical Care
Nephrology
N
188
96
173
Response Rate
64%
63%
Male
45%
87% of
audience, 9%
nationally
74%
Average Age
67%
NA
White
46%
64%
46%
Christian
38%
46%
38%
FMG
53%
NA
43%
Social/ Emotional
26%
66%
73%
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Exposure to Palliative Care
Geriatrics
Critical
Care
Nephrology
Completed a Rotation Focused on
Palliative Care
71%
2%
1%
Had Contact with Palliative Care
Specialist
80%
46%
45%
Quality of teaching with respect
to end-of-life care rated ‘very
good’ or ‘excellent’
53%
34%
15%
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Teaching and Preparedness of Nephrology Fellows
to manage Patients on dialysis, with RTA, and at the end-of-life
Hemodialysis
80%
Teaching
90%
Preparedness
80%
End-of-Life Care
100%
100%
100%
90%
Distal RTA
Teaching
90%
Teaching
Preparedness
80%
Preparedness
70%
70%
70%
60%
60%
60%
50%
50%
50%
40%
40%
40%
30%
30%
30%
20%
20%
20%
10%
10%
10%
0%
0%
0%
0-3
4-7
8-10
0-3
4-7
8-10
0-3
4-7
0 = no teaching or completely unprepared, 10 = a lot of teaching or completely prepared
8-10
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Figure 2
During your fellowship, were you explicitly taught to:
Determine when to refer to hospice
Respond to request to stop dialysis
Help with reconciliation and goodbyes
Assess and manage depression at eol
Tell patient he/she is dying
Treat pain
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
% fellows who received explicit teaching on topic
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Comparison of Experience of Nephrology Fellows
Renal Biopsies Performed with Observation versus Family Meetings
Renal Biopsies Performed
Family Meetings Conducted
100%
100%
80%
Biopsies Performed While
Observed
70%
60%
50%
40%
30%
Family Meetings Conducted
While Observed
60%
50%
40%
30%
20%
20%
10%
0%
Family Meetings Conducted
80%
% fellows
Biopsies Performed
70%
% fellows
90%
90%
10%
never
1-2
3-6
7-10
# biopsies performed
>10
0%
never
1-2
3-6
7-10
>10
# family meetings performed
22
Amount of Training to Manage a
Dying Patient
Geriatrics
Pulmonary/ Critical Care
Nephrology
60%
50%
40%
30%
20%
10%
0%
0-3
0=No Training
4-7
8-10
10=A Lot of Training
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Renal EPEC
 Why
Talk about End-of-Life Care in ESRD
 Communicating Bad News
 Advance Care Planning
 Pain Management
 Common Physical Symptoms
 Incorporating End-of-Life Care into Your
Dialysis Unit
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ESRD Peer Workgroup
Alvin H. Moss, MD, Chair
Barbara Campbell, MSW
Lewis M. Cohen, MD
William R. Coleman, Esq.
Helen Danko, RN, CNN
Richard Dart, MD
Lesley Dinwiddie, MSN, RN
Michael Germain, MD
Cathy Greenquist, RN
Jean Holley, MD
Paul Kimmel, MD
Karren King, MSW
Jenny Kitsen
Lori Lambert, MS, RD, CDE
John E. Leggat, Jr., MD
Sharon McCarthy, RN, FNP
John Newmann, PhD, MPH
Marilyn Pattison, MD
Erica Perry, MSW
Susan Pfettscher, DNSc, RN
David Poppel, MD,
M. Abed Sekkarie, MD
Dale Singer, MHA
Richard Swartz, MD
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Recommendations from
the ESRD Peer Workgroup
Centers for Medicare and Medicaid Services
 Governmental
policy makers should update
"Conditions of Participation" for dialysis units to
include requirements for advance care planning
and the provision of palliative care.
 CMS should collect data on hospice utilization
on the 2746 form.
26
Recommendations from
the ESRD Peer Workgroup
Centers for Medicare and Medicaid Services
 Allow application of Medicare hospice benefit
to ESRD patients certified to be terminally ill
but who choose to continue dialysis
 Improve coordination and linkage of dialysis
and hospice care for ESRD patients
27
Recommendations from
the ESRD Peer Workgroup
Dialysis Units
Dialysis units should educate patients/families about
end-of-life care.
 Dialysis units should institute palliative care programs
that include pain and symptom management, advance
care planning, and psychosocial and spiritual support
for patients and families.
 Dialysis units should adopt policies regarding CPR in
the dialysis unit that respect patients’ rights of selfdetermination, including the right to refuse CPR.

28
Recommendations from
the ESRD Peer Workgroup
Dialysis Units
 Dialysis
units should support the development of
peer mentoring in their facilities.
 Dialysis units should implement bereavement
programs.
29
Recommendations from
the ESRD Peer Workgroup
Nephrology health care professionals
 Nephrologists
and other members of the renal
care team should refer dying ESRD patients to
hospice and/or adopt a palliative care approach
to their management.
30
Robert Wood Johnson Foundation
ESRD Peer Workgroup Report
www.promotingexcellence.org/esrd/
31
Conclusions
 Because
of shortened life expectancy, end-of-life
care is particularly relevant for ESRD pts.
 The knowledge and skills to provide palliative
care for ESRD patients are available but not in
widespread use.
 The recommendations in the RWJF ESRD
Workgroup report provide a “road map” for
improving end-of-life care for ESRD patients.
32
Take-Home Message
Because of the nature of ESRD,
end-of-life care needs to be
part of the continuum of
quality patient care
for ESRD patients.
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