Transcript Incorporating Palliative Care into Your Dialysis Unit

Incorporating Palliative Care
Into Your Dialysis Unit
Alvin H. Moss, MD
West Virginia University
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RWJF ESRD Workgroup
Recommendation:
Dialysis Units
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.
Objectives

Describe the components of a
dialysis unit palliative care
program

Explain how each component can
be implemented

Apply the elements of palliative
care to a tragic ESRD patient
case
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“Not ready to go yet”
A 73 year old woman developed end-stage renal
failure from multiple myeloma. She has had the
multiple myeloma for six years and received
numerous courses of chemotherapy. Her
oncologist said that her marrow was now “burned
out” and that further chemotherapy would not be
of benefit. The patient had been chronically ill and
had been admitted monthly for infections, anemia,
and bleeding. She was anemic with a Hb of 7 and
thrombocytopenic with a platelet count of 90,000.
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“Not ready to go yet”
Because she had a terminal
condition, her attending physician
did not think that dialysis should
be offered to the patient. The
patient, however, stated that she
was “not ready to go yet” and that
she wanted dialysis.
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“Not ready to go yet”
The patient was started on CAPD
and lived for nine months. During
this time, she had 13 hospital
admissions for anemia, upper and
lower GI bleeding, and CHF, and she
was transfused with 46 units of
packed RBCs and 190 units of
platelets.
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“Not ready to go yet”
On the day she died, she
experienced a cardiac arrest at
her daughter’s home. The rescue
squad was called, and the patient
underwent unsuccessful CPR for
one hour. She was declared dead
in the hospital emergency room.
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“Not ready to go yet”
Sadly, she was no more ready to go
after nine months of dialysis then
she had been prior to the start of
dialysis.
What is missing from the care of
this patient?
Components of a
Renal Palliative Care Program
 A Palliative Care Focus
-Educational activities (in-services)
-QI activities (M & M conferences)
-“Would you be surprised…?”
 Pain & Sx Assessment & Management Protocols
 Systematized Advance Care Planning
 Psychosocial and Spiritual Support (peer
counselors)
 Terminal Care Protocol (includes hospice)
 Bereavement Program (includes memorial service)
Pain and Symptom Assessment
and Management Protocols
Causes of Pain in Hemodialysis Patients
N=103/205*
Cause
# Patients
Percent
65
63
Osteoarthritis
20
19
Musculoskeletal
19
19
Osteoporosis
12
12
RA, Bone Dis, Osteo
14
14
Related to dialysis
14
14
Periph Neuropathy
13
13
Periph Vasc Dis
10
10
Carpal tunnel syn
2
2
Other
19
19
Musculoskeletal
* 19 patients had more than one type of pain.
Davison, AJKD 2003;42:1239-1247
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ESRD Patient Assessments of QOL
N=165
Sites: DC, NY, WV
Mean age: 60.9 yrs
Gender: 52% men
Dialysis duration: 44 months
Race: 33% African-American
Biochemical markers: Hb 11.8; Kt/V 1.6; Alb 3.7
Diabetics: 34%
Karnofsky Performance Score: 60%
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ESRD Patient Assessment of QOL
Single item scale: Considering all parts of
my life—physical, emotional, social, spiritual,
and financial—over the past two days the
quality of my life has been:
Very bad 0----------------------------10 Excellent
Single Item Assessment of QOL
Figure 1. Patient Rating of Overall Quality of Life
25
20
%
15
10
5
0
1 to 4
5
6
7
Single Item Scale
8
9
10
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ESRD Patient Assessment of QOL
Please list the PHYSICAL SYMPTOMS or
PROBLEMS which have been the biggest
problem for you over the past two days.
Over the past two days, one troublesome
symptom has been:_________________
The Importance of Pain As a Symptom
Figure 2. Most Common Symptoms Reported by
Symptomatic Patients
50
45
%w ith sym ptom
40
35
30
25
20
15
10
5
0
Pain
Trouble w ith sleep
Sym ptom s
Tiredness
Shortness of breath
Types of Pain Reported
Figure 3. Source of Pain in Patients Reporting Pain
40
35
% of Patients
30
25
20
15
10
5
0
Extremities
Cramps
Stomach
Unspecified
Nature/Source of Pain
Chest
Arthritis
Association Between Reports
of Troublesome 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
Subscale
no symptoms 1 symptom 2+ symptoms
Note: All results statistically significant, p values <.01
Pain Assessment

Ask the patient and BELIEVE his/her complaint

Use a systematic approach to assessment using a
validated pain scale
Pain History
Physical examination
Diagnostic Procedures

Reassess frequently
WHO 3-Step Ladder
3 severe
Morphine
2 moderate
Hydromorphone
Methadone
A/Codeine
Levorphanol
A/Hydrocodone
Fentanyl
A/Oxycodone
Oxycodone
ASA
A/Dihydrocodeine
± Adjuvants
Acetaminophen
Tramadol
NSAIDs
± Adjuvants
1 mild
± Adjuvants
Nociceptive pain . . .

Direct stimulation of intact nociceptors

Transmission along normal nerves

sharp, dull, aching, throbbing
somatic
easy to describe, localize
visceral
difficult to describe & localize
Tissue injury apparent

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Management
opioids
adjuvant / co-analgesics
Neuropathic pain . . .
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Disordered peripheral or central nerves
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Compression, transection, infiltration, ischemia,
metabolic injury
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Described as burning, tingling, shooting, stabbing,
electrical
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Management
• opioids
• adjuvant / co-analgesics often required
Opioids to Avoid in Kidney Failure

meperidine

morphine
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propoxyphene
Constipation . . .
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Common to all opioids

Opioid effects on CNS, spinal cord, myenteric
plexus of gut

Easier to prevent than treat

Start stimulant laxative at the same time as opioid
Senna
Casanthranol
EPEC Module 4, 1999
Advance Care Planning
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RWJF ESRD Workgroup
Recommendation:
Advance Care Planning
Nephrologists should routinely
invite patients to express their
end-of-life care preferences in
the required semi-annual shortterm and annual long-term care
planning meetings.
Advance Care Planning


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Identification of Medical Power of Attorney
Goals of treatment
Cardiopulmonary resuscitation (CPR)

Feeding tubes
Mechanical ventilation
Dialysis

Organ and tissue donation

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Focus on Health States,
not Treatments


“ Under what conditions would you not want to
live?”
“Is it more important to you to live as long as
possible despite some suffering or to live for a
shorter time but without suffering?”
Dialysis Patients’ Preferences
for End-of-Life Care (%)
100
80
60
40
Tube Feeding
Mech Vent
CPR
Dialysis
20
0
Current
Mild
Severe
Health Dementia Dementia
Perm
Coma
Singer.JASN 1995
Increasing the Completion of AD
by Chronic Dialysis Patients
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focus on health states, not interventions
(Singer, Holley)
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involve surrogates in discussions (Moss,
Singer, Holley, Swartz)
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increase dialysis unit staff’s attention to and
comfort with discussing advance directives
(Perry, Holley)
DNR in the Dialysis Unit:
A Form of Advance Directive

Poor outcomes with CPR of dialysis patients

Patients’ rights to self-determination

Patients’ belief that other patients’ wishes for
DNR status should be honored
Psychosocial and Spiritual Support
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RWJF ESRD Workgroup
Recommendation
CMS should require dialysis units to provide
reasonable time for social workers to
counsel patients on psychosocial issues
surrounding end-of-life care. At present,
social workers are not using their
professional skills for psychosocial support
of patients because they are given other
roles such as arranging patient
transportation. Others might perform these
functions.
Peer Resource Consulting

Role modeling

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Information
dispensing
Helping problem
solve

Relieving anxiety
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Empathic listening
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Teaching how to
work with the
health care system
Legitimizing
feelings

Consumer identity

Advocacy

Bridging staff and
patients
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Clarifying values
PRC Training
Self Awareness
Problem Solving
Values
Clarification
Sexuality
Grief and Loss
Assertiveness
Role Plays
Empathy and
Listening
Questions to Explore Spiritual Issues

Is faith (religion, spirituality) important to you in
this illness?
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Has faith (religion, spirituality) been important to
you at other times in your life?
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Do you have someone to talk to about religious
matters?
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Would you like to explore religious matters with
someone?
Lo B, Quill T, Tulsky J. Discussing palliative care with patients.
Ann Intern Med 1999 May;130(9):744-9.
Questions Useful to Discuss Spiritual and
Existential Issues
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What do you still want to accomplish during your
life?
What might be left undone if you were to die
today?
What is your understanding about what happens
after you die?
Given that your time is limited, what legacy do
you want to leave your family?
What do you want your children and
grandchildren to remember about you?
Terminal Care Protocol
Would you be surprised
if the patient died in the next year?
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Referral to Hospice
or Use of a Palliative Care Approach
Recommendation No. 9, RPA/ASN CPG
“…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-of-life 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.”
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RWJF ESRD Workgroup
Recommendation:
CMS and ESRD Networks
CMS should work in conjunction with
hospice and the ESRD Networks to
develop manuals and training for
clinicians regarding coordination and
linkage of dialysis and hospice care for
ESRD patients.
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RWJF ESRD Workgroup
Recommendation:
CMS
CMS should allow application
of the Medicare hospice benefit
to ESRD patients who are
certified by their physicians as
terminally ill but choose to
continue dialysis until they die.
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“Not ready to go yet”
A 73 year old woman developed end-stage
renal failure from multiple myeloma. She
has had the multiple myeloma for six years
and received numerous courses of
chemotherapy. Her oncologist said that her
marrow was now “burned out” and that
further chemotherapy would not be of
benefit.
What should have been done?
Bereavement Program
Baystate Medical Center
Dialysis Unit Memorial Service
Videotape (5 min)
Conclusions

Pain and symptom management are
directly related to dialysis patient QOL.

Pain is the most troublesome symptom for
dialysis patients.
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Advance care planning is necessary to
respect dialysis patients’ wishes, including
for CPR.
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Psychosocial and spiritual support are key
components of ESRD patient care.
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Take-Home Message
The necessary components to
incorporate palliative care into
dialysis units are known. What
is required on the part of each
dialysis unit is a commitment to
make it happen.