Incorporating Palliative Care Into Your Dialysis Unit

Alvin H. Moss, MDAlvin H. Moss, MD

West Virginia UniversityWest 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.

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

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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 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

Causes of Pain in Hemodialysis PatientsN=103/205*

CauseCause # Patients# Patients PercentPercentMusculoskeletalMusculoskeletal 6565 6363 OsteoarthritisOsteoarthritis 2020 1919 MusculoskeletalMusculoskeletal 1919 1919 OsteoporosisOsteoporosis 1212 1212 RA, Bone Dis, OsteoRA, Bone Dis, Osteo 1414 1414Related to dialysisRelated to dialysis 1414 1414Periph NeuropathyPeriph Neuropathy 1313 1313Periph Vasc DisPeriph Vasc Dis 1010 1010Carpal tunnel synCarpal tunnel syn 22 22OtherOther 1919 1919

Davison, AJKD 2003;42:1239-1247

* 19 patients had more than one type of pain.

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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%

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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

%

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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

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

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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 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

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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?

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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 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.

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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.

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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?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.

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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.