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Palliative Care
for the ESRD Patient
Alvin H. Moss, MD
Center for Health Ethics and Law
Section of Nephrology
West Virginia University
1
Relationship between
Palliative Care and EOLC
Palliative
Care
End-of-Life/
Hospice Care
Definition
Palliative care is comprehensive,
interdisciplinary care of patients and families
facing a chronic or terminal illness focusing
primarily on comfort and support.
Billings JA. Palliative Care. Recent Advances. BMJ
2000:321:555-558.
3
Palliative Care Approach
Pain and symptom management
 Communication-Advance care planning

• DNR
• Advance Directives
Psychosocial and spiritual support
 Hospice referral

4
Curative / Remissive Therapy
Start Dialysis
Death
Palliative Care
Hospice
5
Patient’s Concerns
Regarding End-of-Life Care





Receiving adequate pain and symptom control
Avoiding inappropriate prolongation of dying
Achieving a sense of control
Relieving burden on loved ones
Strengthening relationships with loved ones
Singer PA, et al. JAMA 1999; 281:163-168.
6
Relevance to ESRD



Shortened life expectancy
High symptom burden
Aging population
7
ESRD Patient Probability of Survival
Patient Population
1-yr for all incident patients, unadjusted
1-yr for incident patients >65 yrs, unadjusted
2-yr for all incident patients, unadjusted
2-yr for all incident patients >65 yrs, unadj
5-yr for all incident patients, unadjusted
5-yr for incident patients >65 yrs, unadjusted
10-yr for all incident patients, unadjusted
10-yr for incident patients >65 yrs, unadjusted
USRDS, 2004 Annual Data Report
Survival
(%)
79
65
65
48
38
18
20
3
8
Survival Rates for Cancer and ESRD
Patients
100.0%
Survival Rate (%)
90.0%
80.0%
70.0%
60.0%
Cancer
ESRD
50.0%
40.0%
30.0%
20.0%
10.0%
0.0%
2 Year
5 Year
10 Year
9
Data from USRDS and NCI
High Symptom Burden




HD patients median # of symptoms=9
Pain in over 50%
Associated with impaired HRQoL
Associated with depression
Weisbord, et al. JASN 2005:16:2487-2494
10
Prevalence of Individual Symptoms
100%
90%
80%
Percent
70%
60%
50%
40%
30%
20%
10%
0%
Dry Skin
Tired or Lack of
Energy
Itching
Bone or Joint
Muscle Cramps
11
Pain
Weisbord, JASN 2005;16:2487-2494
Association Between Symptoms
and Quality of Life Measures
160 138
140
119
120
94.5
100
80
60
37.6
24.6 23.4
29
40
21.7
18.3
7.56.5
5.3
20
0
MQOL Total MQOL QOL Single SWLS
Score
Physical Item Index
Kimmel, et al.
Subscale
AJKD 2003
no symptoms 1 symptom 2+ symptoms
Note: All results statistically significant, p values <.01
12
Aging Population





Rising median age of dialysis population
>50% over 65 yrs old
Over 79,000 dialysis patients die per year
~20% die after decision to withdraw
High percentage with comorbidities
High in-hospital death-63%*
* United States Renal Data System 2001-2002 cohort
13
Would you be surprised if the
patient died in the next year?
14
Performance of “Surprise” Question in ESRD*
Prognostic Factor
All
(N=166)
"Yes"
(N=130)
"No"
(N=36)
P value
McGill QOL Question
6.7±2.1
6.8±2.1
6.1±2.0
0.052
CCI Score
6.0±2.3
5.7±2.2
7.3±1.9
<0.001
Pain VAS Score
2.5±3.2
2.2±3.0
3.8±3.6
0.007
78.7±17.6
84.0±13.7
58.8±16.3
<0.001
65.9±15.8
63.4±16.2
75.1±9.8
<0.001
Kt/V
1.5±0.3
1.45±0.28
1.48±0.26
0.540
Hb (g/dL)
12.0±1.1
12.1±1.2
11.9±0.87
0.483
Serum Albumin
3.8±0.3
3.9±0.27
3.7±0.42
0.004
Male/Female
55/45
58/42
44/56
0.134
White/Non-white
*Values are mean ± SD or %
90/10
76/94
24/6
0.072
Karnofsky Performance Status
Age (yrs)
15
Incorporating Palliative Care
into Your Dialysis Unit








Surprise question on rounds
Educational in-services on palliative care topics
Advance care planning
Pain & symptom assessment and treatment protocols
Communication of prognosis and changes in condition
Referral to hospice when terminally ill
QI with review of quality of death
Memorial service
16
Dialysis Withdrawal and Hospice Status
of Deceased Patients
USRDS 2001-2002 Cohort
Dialysis Withdrawal and
Hospice Status
Deceased Patients
(N=115,239)
Percent
Mean Age in
Years
Hospice Yes
15,565
13.5
73.4 ± 11.0 *
Hospice No
99,674
86.5
68.6 ± 13.4
Withdrawal Yes
25,075
21.8
72.7 ± 11.8 **
Hospice Yes
10,518
41.9
73.9 ± 10.6
Hospice No
14,557
58.1
71.7 ± 12.3
81,624
70.8
68.0 ± 13.4
Hospice Yes
2,751
3.4
71.7 ± 11.7
Hospice No
78,873
96.6
67.9 ± 13.5
8,540
7.4
71.1 ± 13.2
Withdrawal No
Withdrawal Status
Unknown
Murray and Moss, ASN 2004
17
Death After Dialysis Withdrawal: Are
Patients Appropriate for Hospice?
Study
Year
N
Mean
Range
Neu & Kjellstrand
1986
155
8.1 days
1 - 29
Sekkarie & Moss
1998
60
12 days
0 - 150
Cohen et al
2000
126
8.2 days
1 - 46
18
Ethical and Legal Issues
Alvin H. Moss, MD
Center for Health Ethics and Law
Section of Nephrology
West Virginia University
Objectives
Present the recommendations of the RPA/ASN
on when it is appropriate to withhold and stop
dialysis
 Discuss the ethical justifications
 Analyze 3 cases of dialysis patients at the end
of life in which decision-making is challenging

A Recent Case in Point
Mrs. G is a 78 year old woman was referred by
her primary MD for evaluation of CKD with
worsening function. She had a 20 year history
of DM complicated by PVD, requiring toe
amputation. She had multiple other comorbid
illnesses including hypertension, cryptogenic
cirrhosis with liver failure, pancytopenia, CHF,
and a history of massive GI bleeding from
esophageal varices a year ago.
A Recent Case in Point
The patient required assistance with all ADL
except feeding and was residing in a NH. She
had only a sister whom she named her medical
power of attorney representative. She had
decision-making capacity.
Lab data revealed an estimated GFR of 15
ml/min, and a serum albumin of 2.8 mg/dl. It
was obvious she would progress to ESRD
soon. The patient made it clear that despite her
poor prognosis, she wanted hemodialysis
when needed.
When should we not start?
When should we stop?
Clinical Practice Guideline #2
Shared Decision-Making
in the
Appropriate Initiation of
and
Withdrawal from Dialysis
Clinical Practice Guideline (CPG)
A systematically developed statement to
assist practitioner and patient decisions
about appropriate health care for specific
clinical circumstances (IOM).
RPA/ASN Guideline
Nine recommendations
 Rationale for each recommendation
 25 prognostic tables
 302 references
 Consensus of AAKP, RPA, ASN, ANNA,
ASPN, NKF, NRAA, ESRD Forum

How Recommendations Were
Developed?
The working group formulated specific
guideline recommendations taking into
account…
– Ethical principles
– Case and statutory law
– Research
 Peer review by stakeholders

Ethical Principles
Respect for patient autonomy
 Beneficence
 Nonmaleficence
 Justice
 Professional integrity

Topics to be Considered
in Ethical Analysis
 Medical
Indications
 Patient Preferences
 Quality of Life
 Contextual Features
Jonsen, Siegler, Winslade. Clinical Ethics, 5th ed.2002
Medical Indications
Diagnostic and therapeutic
interventions (e.g., dialysis) are
deemed to be indicated if the
expected medical benefits justify
the risks.
Recommendation #1:
Shared Decision-Making
A patient-physician relationship that promotes shared decisionmaking is recommended for all patients with either ARF or
ESRD. Participants in shared decision-making should involve at
a minimum the patient and the physician. If a patient lacks
decision-making capacity, decisions should involve the legal
agent. With the patient’s consent, shared decision-making may
include family members or friends and other members of the
renal care team.
Recommendation #2:
Informed Consent or Refusal
Physicians should fully inform patients about their
diagnosis, prognosis, and all treatment options, including:
1) available dialysis modalities, 2) not starting dialysis and
continuing conservative management which should include
end-of-life care, 3) a time-limited trial of dialysis, and 4)
stopping dialysis and receiving end-of-life care. Choices
among options should be made by patients or, if patients
lack decision-making capacity, their designated legal
agents. Their decisions should be informed and voluntary…
Recommendation #3
Estimating Prognosis
To facilitate informed decisions about starting
dialysis for either ARF or ESRD, discussions
should occur with the patient or legal agent
about life expectancy and quality of life.…
All patients requiring dialysis should have their
chances for survival estimated, with the
realization that the ability to predict survival in
the individual patient is difficult and imprecise.
The estimates should be discussed with the
patient or legal agent, patient’s family, and
among the medical team.
Predictors of Poor Prognosis
for ESRD Patients
 Age
 Functional
ability
 Nutritional status
 Comorbid Illnesses - diabetes, MI, PVD
RPA/ASN. Shared Decision-Making in the Appropriate Initiation of
and Withdrawal from Dialysis. 2000.
Nutritional Status
albumin < 3.5 g/dL ≈ 50% 1 yr mortality
 Serum albumin < 2.5 g/dL vs > 4.0 g/dL confers
7.45 greater risk of early death
 Serum
RPA/ASN. Shared Decision-Making in the Appropriate Initiation of
and Withdrawal from Dialysis. 2000.
Indicators of Poor Prognosis
 Severe
functional impairment confers 3.46 times
greater risk of early death
 Acute MI associated with 60% 1 yr mortality
 AKA associated with 73% 1 yr mortality
RPA/ASN. Shared Decision-Making in the Appropriate Initiation of
and Withdrawal from Dialysis. 2000.
Charlson Comorbidity Index
1 point
2 points
3 points
6 points
1 point
MI, CHF, PVD, CVA,
Dementia, COPD, PUD,
Mild liver disease
Mod-severe CKD, CA w/o mets
DM with end-organ damage
Mod-severe liver disease
Metastatic solid CA
AIDS
Each decade in age > 40 years
Beddhu et at. Am J Med 2000;108:609-613
Calculated CCI for Mrs. G
1 point
Congestive Heart Failure
1 point
Peripheral Vascular Disease
2 points
Diabetes with end-organ damage
2 points
Severe kidney disease
3 points
Age correction (3 decades older than 40 yrs)
3 points
Severe liver disease
Total
12 points
Prognosis from CCI
Low score Mod Score High
Score
Very High
Score
CCI Points < or =3
4-5
6-7
= or >8
Mortality
0.03
(per pt-yr)
0.13
0.27
0.49
Who Should Not Be Dialyzed
 Patients
(legal agents) who refuse dialysis
 Patients with profound neurological impairment
 Patients terminally ill from a non-renal cause
 Patients whose condition precludes the technical
process of dialysis-advanced dementia and
severe mental disability
RPA/ASN. Shared Decision-Making in the Appropriate
Initiation of and Withdrawal from Dialysis. 2000.
Possible Recommendations
to Mrs. G
 Start
dialysis without any limitations
 Time-limited trial of dialysis
 Refuse to start dialysis
Recommendation #8
Time-Limited Trials
For patients requiring dialysis, but who have an
uncertain prognosis, or for whom a consensus
cannot be reached about providing dialysis,
nephrologists should consider offering a timelimited trial of dialysis.
The Daughter Rescinded the DNR Order
A 65-year-old widow with a history of DM,
hypertension, and TIA was started on HD for DN. She
was cognitively intact, cooperative, compliant, and
able to deal with her diagnosis of ESRD. She used the
Wheelchair Van Service because she did not want to
be a burden. She had family support, primarily from
her daughter. Two years after starting dialysis, she
signed a DNR order and a Health Care Proxy, naming
her daughter. About 2 weeks later, a CT scan done for
mental status changes revealed multiple areas of
infarction. Subsequently, she had numerous
admissions to the hospital for fluid overload. Dialysis
was increased to 4 times a week. Her mental status
deteriorated further, and she was transferred to a NH.
Subsequently, she was noted to come from the NH
to the dialysis facility very agitated. She would upset
other patients. She became progressively
problematic, and medications were tried to control
her inappropriate yelling and screaming, to no avail.
She was transferred to the hospital unit where she
could be treated in isolation and observed more
closely. She was starting to get out of her chair
during treatments and pull out dialysis needles. Her
daughter was repeatedly informed of her behavior,
but her response was to rescind the DNR order.
The patient’s transfer to the hospital unit angered the
daughter; she did not accept that it was in the patient’s
best interest. The patient became more demented. She
refused to eat; she lost 60 lbs down to 70 lbs. The
daughter avoided meetings to discuss long-range
planning. Yet she made it clear that she did not wish to
stop dialysis. She asked about a feeding tube to
increase the patient’s weight. The patient had no
swallowing or GI problems to justify PEG placement.
The patient continued to do poorly and died 5 years
after starting dialysis and 14 months after becoming
incapacitated.
Case Courtesy of Rocco C. Venuto, MD
The Daughter Rescinded
the DNR Order

Medical Indications
– Dialysis – Recommendation No. 7 applies
– CPR - <5% chance of survival – ESRD, strokes,
dementia, malnutrition

Patient Preferences
– No CPR – failure to respect patient autonomy
– AD
• Daughter is proxy
• Wishes re: withdrawal of dialysis unknown
Recommendation #7
Special Patient Groups
It is reasonable to consider not initiating or
withdrawing dialysis for patients with ARF
or ESRD who have a terminal condition
from a nonrenal cause or whose medical
condition precludes the technical process
of dialysis.
Recommendation #5
Advance Directives
The renal care team should attempt to
obtain written advance directives from
all dialysis patients. These advance
directives should be honored.
Failure of Advance Care Planning
to Elicit Patients’ Preferences for
Withdrawal From Dialysis
Patients who had completed a living will and proxy were most
likely to have discussed EOLC, but stopping dialysis was the least
often discussed intervention, even in this patient subset. Sixtynine percent had discussed MV; 55%, tube feedings; 43%, CPR;
and only 31% had discussed stopping dialysis (all P < 0.001).
Although withdrawal from dialysis is relatively common, it is
rarely discussed in advance care planning by dialysis patients.
Dialysis unit staff and nephrologists should address issues
involving withdrawal from dialysis with their chronic dialysis
patients.
Am J Kidney Dis 1999; 33: pp 688-693
The Daughter Rescinded the DNR
Order

QOL
– Multiple admissions for fluid overload
– Agitation
– Severe dementia with cachexia
– Failure to thrive
The Daughter Rescinded the DNR
Order

Contextual
– Daughter ethically and legally ought not override
patient’s wishes
– NY law
– Other patients in unit – use of sitter
– Daughter’s emotional and spiritual needs
Emotional and Spiritual Issues
“I am convinced that what really makes these
decisions ‘hard choices’ has little to do with the
medical, legal, ethical, or moral aspects of the
decision process. The real struggles are
emotional and spiritual. People wrestle with
letting go. These are decisions of the heart, not
just the head.”
Chaplain Hank Dunn, Hard Choices for Loving People, 4th ed., 2002
Spiritual Issues
in Withdrawal of Dialysis
Once the treatment is no longer medically indicated, the real
issue is whether the patient or family (or physician) can “let go.”
“Those who choose such life-prolonging treatments for failing
patients do so primarily out of an inability to let go and not out of
moral necessity or medical appropriateness.”
Chaplain Hank Dunn, Hard Choices for Loving People, 4th ed.,2002
What should you do?
Not allow the daughter to rescind the patient’s
DNR order to respect patient autonomy
 Require the daughter to sit with the patient during
treatments
 Ask the daughter what the mother would want if
she were able to say
 Instruct the daughter on her ethical and legal role
as durable power of attorney for health care
 Provide support to the daughter

Short-term Benefit
in a Terminally Ill Patient
A 78 yr old woman presented with a 3 day hx of
increasing SOB due to pulmonary edema. She had CKD
with a serum Cr of 12. CXR showed a large R hilar
shadow suggestive of carcinoma of the lung. She
received hemodialysis pending work-up. Investigations
showed squamous cell carcinoma of the R lung; she was
referred for radiotherapy.
With dialysis her dyspnea regressed, and she felt well.
There were no symptoms from the carcinoma. She
requested to continue dialysis so that she could visit her
extended family and tidy her affairs. She said she would
wish to stop dialysis once she developed symptoms
from the cancer. After 7 wks of dialysis she developed
dyspnea and pain related to her cancer. She withdrew
from dialysis and received palliative care until her death.
Reasons to Dialyze
Terminally Ill Patients
 Short-term
benefit for competent patient
 Time-limited trial of dialysis to help patient and
family understand burdens of treatment
There is an option for ESRD patients
who choose to stop or not to start
dialysis: continued palliative care.
Recommendation #9
Palliative Care
All patients who decide to forgo dialysis (or for whom
such a decision is made) should receive continued
palliative care. With the patient’s consent, persons with
expertise in such care, such as hospice health care
professionals, should be involved in managing the
medical, psychosocial, and spiritual aspects of end-oflife care for these patients. Patients should be offered
the option of dying where they prefer including at home
with hospice care. Bereavement support should be
offered to patients’ families.
Shared Decision-Making
in the Appropriate Initiation of
and Withdrawal from Dialysis
rpa@renalmd.org
301.468.3515
Robert Wood Johnson Foundation
ESRD Peer Workgroup Report
Completing the Continuum
of Nephrology Care
www.promotingexcellence.org/esrd/
Conclusions
 Recent
research enables us to predict more
accurately the patients for whom the burdens
of dialysis will likely outweigh the benefits.
 Dialysis decision-making should remain caseby-case.
 New nephrology guidelines are helpful in
decision-making.
 Professional integrity requires us to respect
patients’ wishes even when families want to
override them and to do no harm.