Incorporating Palliative Care Into Your Dialysis Unit
Transcript of Incorporating Palliative Care Into Your Dialysis Unit
Incorporating Palliative Care Into Your Dialysis Unit
Alvin H. Moss, MDAlvin H. Moss, MD
West Virginia UniversityWest Virginia University
EENNEECC
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.
ObjectivesObjectives
Describe the components of a Describe the components of a dialysis unit palliative care dialysis unit palliative care programprogram
Explain how each component can Explain how each component can be implementedbe implemented
Apply the elements of palliative Apply the elements of palliative care to a tragic ESRD patient care to a tragic ESRD patient casecase
EENNEECC
“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.
EENNEECC
“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.
EENNEECC
“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.
EENNEECC
“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.
EENNEECC
“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 What is missing from the care of this patient?this patient?
Components of a Renal Palliative Care Program
A Palliative Care FocusA Palliative Care Focus-Educational activities (in-services)-Educational activities (in-services)-QI activities (M & M conferences)-QI activities (M & M conferences)-“Would you be surprised…?”-“Would you be surprised…?”
Pain & Sx Assessment & Management ProtocolsPain & Sx Assessment & Management Protocols Systematized Advance Care PlanningSystematized Advance Care Planning Psychosocial and Spiritual Support (peer Psychosocial and Spiritual Support (peer
counselors)counselors) Terminal Care Protocol (includes hospice)Terminal Care Protocol (includes hospice) Bereavement Program (includes memorial service)Bereavement Program (includes memorial service)
Pain and Symptom Assessmentand Management Protocols
EENNEECC
ESRD Patient Assessments of QOLN=165N=165
Sites: DC, NY, WVSites: DC, NY, WV
Mean age: 60.9 yrsMean age: 60.9 yrs
Gender: 52% menGender: 52% men
Dialysis duration: 44 monthsDialysis duration: 44 months
Race: 33% African-AmericanRace: 33% African-American
Biochemical markers: Hb 11.8; Kt/V 1.6; Alb 3.7Biochemical markers: Hb 11.8; Kt/V 1.6; Alb 3.7
Diabetics: 34%Diabetics: 34%
Karnofsky Performance Score: 60%Karnofsky Performance Score: 60%
EENNEECC
ESRD Patient Assessment of QOL
Single item scale: Single item scale: Considering all parts of Considering all parts of my life—physical, emotional, social, spiritual, my life—physical, emotional, social, spiritual, and financial—over the past two days the and financial—over the past two days the quality of my life has beenquality of my life has been::
Very bad 0----------------------------10 ExcellentVery bad 0----------------------------10 Excellent
Single Item Assessment of QOL
Figure 1. Patient Rating of Overall Quality of Life
0
5
10
15
20
25
1 to 4 5 6 7 8 9 10
Single Item Scale
%
EENNEECC
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
05
101520253035404550
Pain Trouble w ith sleep Tiredness Shortness of breath
Symptoms
%w
ith s
ympt
om
Types of Pain Reported
Figure 3. Source of Pain in Patients Reporting Pain
0
5
10
15
20
25
30
35
40
Extremities Cramps Stomach Unspecif ied Chest Arthritis
Nature/Source of Pain
% o
f Pat
ient
s
Association Between Reports Association Between Reports of Troublesome Symptoms of Troublesome Symptoms
and Quality of Life Measuresand Quality of Life Measures
138119
94.5
37.629 21.7
7.56.5 5.3
24.623.418.3
020406080
100120140160
MQOL TotalScore
MQOLPhysicalSubscale
QOL SingleItem Index
SWLS
no symptoms 1 symptom 2+ symptoms
Tot
al S
c ore
Tot
al S
c ore
Note: All results statistically significant, p values <.01Note: All results statistically significant, p values <.01
Pain Assessment Ask the patient and BELIEVE his/her complaintAsk the patient and BELIEVE his/her complaint Use a systematic approach to assessment using a Use a systematic approach to assessment using a
validated pain scalevalidated pain scalePain HistoryPain HistoryPhysical examinationPhysical examinationDiagnostic ProceduresDiagnostic Procedures
Reassess frequentlyReassess frequently
WHO 3-Step Ladder
1 mild
2 moderate
3 severe
Morphine
Hydromorphone
Methadone
Levorphanol
Fentanyl
Oxycodone
± Adjuvants
A/Codeine
A/Hydrocodone
A/Oxycodone
A/Dihydrocodeine
Tramadol
± Adjuvants
ASA
Acetaminophen
NSAIDs
± Adjuvants
Nociceptive pain . . .
Direct stimulation of intact nociceptorsDirect stimulation of intact nociceptors Transmission along normal nervesTransmission along normal nerves sharp, dull, aching, throbbingsharp, dull, aching, throbbing
somaticsomaticeasy to describe, localizeeasy to describe, localize
visceralvisceraldifficult to describe & localizedifficult to describe & localize
Tissue injury apparentTissue injury apparent ManagementManagement
opioidsopioidsadjuvant / co-analgesicsadjuvant / co-analgesics
Neuropathic pain . . .
Disordered peripheral or central nervesDisordered peripheral or central nerves Compression, transection, infiltration, ischemia, Compression, transection, infiltration, ischemia,
metabolic injurymetabolic injury Described as burning, tingling, shooting, stabbing, Described as burning, tingling, shooting, stabbing,
electrical electrical ManagementManagement
• opioidsopioids• adjuvant / co-analgesics often requiredadjuvant / co-analgesics often required
Opioids to Avoid in Kidney Failure
meperidinemeperidine morphinemorphine propoxyphenepropoxyphene
Constipation . . . Common to all opioidsCommon to all opioids Opioid effects on CNS, spinal cord, myenteric Opioid effects on CNS, spinal cord, myenteric
plexus of gutplexus of gut Easier to prevent than treatEasier to prevent than treat Start stimulant laxative at the same time as opioidStart stimulant laxative at the same time as opioid
SennaSennaCasanthranolCasanthranol
EPEC Module 4, 1999
Advance Care Planning
EENNEECC
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 short-term and annual long-term care planning meetings.
Advance Care Planning
Identification of Medical Power of AttorneyIdentification of Medical Power of Attorney Goals of treatmentGoals of treatment Cardiopulmonary resuscitation (CPR)Cardiopulmonary resuscitation (CPR) Feeding tubesFeeding tubes Mechanical ventilationMechanical ventilation Dialysis Dialysis Organ and tissue donationOrgan and tissue donation
Focus on Health States, Focus on Health States, not Treatmentsnot Treatments
“ “ Under what conditions would you not want to Under what conditions would you not want to live?”live?”
““Is it more important to you to live as long as Is it more important to you to live as long as possible despite some suffering or to live for a possible despite some suffering or to live for a shorter time but without suffering?”shorter time but without suffering?”
Dialysis Patients’ Preferencesfor End-of-Life Care (%)
0
20
40
60
80
100
CurrentHealth
MildDementia
SevereDementia
PermComa
Tube FeedingMech VentCPRDialysis
Singer.JASN 1995
Increasing the Completion of AD Increasing the Completion of AD by Chronic Dialysis Patientsby Chronic Dialysis Patients
focus on health states, not interventions focus on health states, not interventions (Singer, Holley)(Singer, Holley)
involve surrogates in discussions (Moss, involve surrogates in discussions (Moss, Singer, Holley, Swartz)Singer, Holley, Swartz)
increase dialysis unit staff’s attention to and increase dialysis unit staff’s attention to and comfort with discussing advance directives comfort with discussing advance directives (Perry, Holley)(Perry, Holley)
DNR in the Dialysis Unit:A Form of Advance Directive
Poor outcomes with CPR of dialysis patientsPoor outcomes with CPR of dialysis patients Patients’ rights to self-determinationPatients’ rights to self-determination Patients’ belief that other patients’ wishes for Patients’ belief that other patients’ wishes for
DNR status should be honoredDNR status should be honored
Psychosocial and Spiritual Support
EENNEECC
RWJF ESRD Workgroup RWJF ESRD Workgroup RecommendationRecommendation
CMS should require dialysis units to provide CMS should require dialysis units to provide reasonable time for social workers to reasonable time for social workers to counsel patients on psychosocial issues counsel patients on psychosocial issues surrounding end-of-life care. At present, surrounding end-of-life care. At present, social workers are not using their social workers are not using their professional skills for psychosocial support professional skills for psychosocial support of patients because they are given other of patients because they are given other roles such as arranging patient roles such as arranging patient transportation. Others might perform these transportation. Others might perform these functions.functions.
Peer Resource Consulting
Role modelingRole modeling Information Information
dispensingdispensing Empathic listeningEmpathic listening Teaching how to Teaching how to
work with the work with the health care systemhealth care system
Clarifying valuesClarifying values
Helping problem Helping problem solvesolve
Relieving anxietyRelieving anxiety Legitimizing feelingsLegitimizing feelings Consumer identityConsumer identity AdvocacyAdvocacy Bridging staff and Bridging staff and
patientspatients
PRC Training
Self Awareness Problem Solving
ValuesClarification
Sexuality
AssertivenessGrief and Loss
Empathy andListening
Role Plays
Questions to Explore Spiritual Issues
Is faith (religion, spirituality) important to you in Is faith (religion, spirituality) important to you in this illness?this illness?
Has faith (religion, spirituality) been important to Has faith (religion, spirituality) been important to you at other times in your life?you at other times in your life?
Do you have someone to talk to about religious Do you have someone to talk to about religious matters?matters?
Would you like to explore religious matters with Would you like to explore religious matters with someone?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
What do you still want to accomplish during your What do you still want to accomplish during your life?life?
What might be left undone if you were to die What might be left undone if you were to die today?today?
What is your understanding about what happens What is your understanding about what happens after you die?after you die?
Given that your time is limited, what legacy do Given that your time is limited, what legacy do you want to leave your family?you want to leave your family?
What do you want your children and What do you want your children and grandchildren to remember about you?grandchildren to remember about you?
Terminal Care Protocol
Would you be surprised if the patient died in the next year?
EENNEECC
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.”
EENNEECC
RWJF ESRD Workgroup Recommendation:
CMS and ESRD Networks
CMS should work in conjunction with CMS should work in conjunction with hospice and the ESRD Networks to hospice and the ESRD Networks to develop manuals and training for develop manuals and training for clinicians regarding coordination and clinicians regarding coordination and linkage of dialysis and hospice care for linkage of dialysis and hospice care for ESRD patients.ESRD patients.
EENNEECC
RWJF ESRD Workgroup Recommendation:
CMS
CMS should allow application CMS should allow application of the Medicare hospice benefit of the Medicare hospice benefit to ESRD patients who are to ESRD patients who are certified by their physicians as certified by their physicians as terminally ill but choose to terminally ill but choose to continue dialysis until they die. continue dialysis until they die.
EENNEECC
“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?What should have been done?
Bereavement Program
Baystate Medical Center Dialysis Unit Memorial Service
Videotape (5 min)
Conclusions Pain and symptom management are Pain and symptom management are
directly related to dialysis patient QOL.directly related to dialysis patient QOL. Pain is the most troublesome symptom for Pain is the most troublesome symptom for
dialysis patients.dialysis patients. Advance care planning is necessary to Advance care planning is necessary to
respect dialysis patients’ wishes, including respect dialysis patients’ wishes, including for CPR.for CPR.
Psychosocial and spiritual support are key Psychosocial and spiritual support are key components of ESRD patient care.components of ESRD patient care.
EENNEECC
Take-Home Message
The necessary components to The necessary components to incorporate palliative care into incorporate palliative care into dialysis units are known. What dialysis units are known. What is required on the part of each is required on the part of each dialysis unit is a commitment to dialysis unit is a commitment to make it happen.make it happen.