Determining Preferences for Care

Determining Preferences for CareDetermining Preferences for Care

Karen M. Knops, M.D.Karen M. Knops, M.D.

Dept. of Palliative CareDept. of Palliative Care

October 2004October 2004

““It is more important to know It is more important to know what what kind of patientkind of patient has a diseasehas a disease than than what kind of disease a patient has”what kind of disease a patient has”

(Sir William Osler)(Sir William Osler)

Evaluating Goals of Care: Evaluating Goals of Care: The ContextThe Context

1. Patient desires and goals are not the same as 1. Patient desires and goals are not the same as our desires and goals our desires and goals

2. Problems arise when we don’t realize or 2. Problems arise when we don’t realize or acknowledge #1acknowledge #1

3. In medicine, a systematic approach to 3. In medicine, a systematic approach to complex problems can prevent oversights, complex problems can prevent oversights, redundancy, and confusionredundancy, and confusion

The Benefits of Evaluating The Benefits of Evaluating Goals of Care: Goals of Care:

• Guide decision-making and prevent Guide decision-making and prevent

unnecessary treatmentsunnecessary treatments

• Identify misconceptions, barriers to careIdentify misconceptions, barriers to care

• Evaluate spirituality, perspective on life, Evaluate spirituality, perspective on life,

support system, level of functionsupport system, level of function

• CYACYA

Current Models of the Current Models of the Goals-of-Care Discussion Goals-of-Care Discussion

• The “Withdrawal of support”The “Withdrawal of support”• The “DNR/DNI”The “DNR/DNI”• The talk so vague that patient does not realize that The talk so vague that patient does not realize that

end-of-life issues were discussedend-of-life issues were discussed• The Advance Care Plan/ DPA talkThe Advance Care Plan/ DPA talk• The Hospice Referral The Hospice Referral (aka the “Hasta la vista”)(aka the “Hasta la vista”)

We often ask patients and surrogates to speak our We often ask patients and surrogates to speak our language and fit with existing care optionslanguage and fit with existing care options

A Systematic ApproachA Systematic Approach

Step 1: Start where they areStep 1: Start where they are- Open the with a summary- Open the with a summary

Step 2: Step 2: Find out where they want to go Find out where they want to go and explore how to get thereand explore how to get there

- GOOD- GOOD

Step 1: Step 1: Start Start where they arewhere they are• Solicit a summary :Solicit a summary :

““What have you been hearing about your What have you been hearing about your condition so far?”condition so far?”

““Can you tell me where you are at in your Can you tell me where you are at in your illness and your treatment?”illness and your treatment?”

• Offer a summary:Offer a summary:““Let me see if I can summarize what has Let me see if I can summarize what has

happened so far…”happened so far…”

Step 2: Find out where they Step 2: Find out where they want to gowant to go

• GGoalsoals

• OOptionsptions

• OOpinionpinion

• DDocumentationocumentation

GGOOD - GoalsOOD - Goals

• Sometimes patient/family are able to Sometimes patient/family are able to clearly and solidly articulate goals clearly and solidly articulate goals

• When goals are poorly articulated, we When goals are poorly articulated, we can start by inquiring about three areas can start by inquiring about three areas of concern of concern

Three Domains of Patient Perspective,Three Domains of Patient Perspective, Three Players in the Illness Narrative Three Players in the Illness Narrative

SufferingSuffering

DiseaseDisease

DeathDeath

The “Trade-Offs”The “Trade-Offs”

Patient’s perspective on the role of disease and desire Patient’s perspective on the role of disease and desire for medications & interventions to cure or control itfor medications & interventions to cure or control it

Patient’s perspective on the role of suffering and Patient’s perspective on the role of suffering and desire for medications & interventions to ease desire for medications & interventions to ease sufferingsuffering

Patient’s perspective on death and desire to hasten or Patient’s perspective on death and desire to hasten or control circumstances of deathcontrol circumstances of death

SufferingSuffering

DiseaseDisease

DeathDeath

DiseaseDisease SufferingSuffering DeathDeath

Roles of each Roles of each domain: domain: metaphorical metaphorical clues clues

““I’m going to I’m going to fight this fight this thing to the thing to the end”end”

““That cancer That cancer is God’s is God’s will”will”

““It’s stealing It’s stealing my life”my life”

““It’s just my It’s just my cross to cross to bear”bear”

““This pain is This pain is torturing me”torturing me”

““I’m so lost I’m so lost in all of this”in all of this”

““I’m not I’m not giving up giving up yet”yet”

““Let’s get Let’s get the show on the show on the road”the road”

““I need to be I need to be at home”at home”


Patient Patient GoalsGoals

•Prevent Prevent diseasedisease

•Improve Improve morbiditymorbidity

•Prolong lifeProlong life

•““Doing Doing everything” to everything” to fight diseasefight disease

•Control physical Control physical and emotional and emotional sufferingsuffering

•Optimize Optimize functionalfunctional status, status, QOLQOL

•Emotional, Emotional, spiritual supportspiritual support

•Family support Family support and educationand education

•Control location Control location and invasiveness and invasiveness of careof care

•Avoid life-Avoid life-prolonging prolonging measuresmeasures

•Accepting Accepting increased risk of increased risk of death to maximize death to maximize symptom controlsymptom control

•Assisted Suicide Assisted Suicide (Oregon)(Oregon)

Identifying GoalsIdentifying Goals

• Highlight conflicting goals or expectations that Highlight conflicting goals or expectations that are unrealistic (Illustrates what “are unrealistic (Illustrates what “homeworkhomework” ” the patient needs to do)the patient needs to do)

• Provides a framework for discussing complex Provides a framework for discussing complex patients with other team members and patients with other team members and readdressing patient goals at a later datereaddressing patient goals at a later date

Translate Goals to a Plan of CareTranslate Goals to a Plan of Care

• GGoalsoals

• OOptionsptions

• OOpinionpinion


GGOOOD - OD - OptionsOptions

• Present the options that are most Present the options that are most relevant, as identified in the “goals” relevant, as identified in the “goals” discussiondiscussion

• Benefits and burdens of each optionBenefits and burdens of each option

• Present ProbabilityPresent Probability


Care Care OptionsOptions

•Medical and Medical and surgical surgical interventionsinterventions

•Treatment of Treatment of comorbiditiescomorbidities

•RehabilitationRehabilitation

•Monitoring of Monitoring of disease disease progressionprogression

•Treatment of Treatment of illness for illness for symptom symptom reductionreduction

•Medical and Medical and surgical surgical interventionsinterventions

•Support of Support of emotional and emotional and spiritual sufferingspiritual suffering

•Terminal Terminal sedationsedation

•Spiritual and Spiritual and emotional emotional supports supports

•Avoid life-Avoid life-prolonging prolonging measuresmeasures

•Risk of death to Risk of death to control symptomscontrol symptoms

•Assisted Suicide Assisted Suicide (Oregon)(Oregon)


• GGoalsoals

• OOptionsptions

• OOpinionpinion


GOGOOOD - D - OpinionOpinion

• Offer your opinion given all of the Offer your opinion given all of the information and patient/family goalsinformation and patient/family goals

• Use neutral languageUse neutral language

• Separate data from opinionSeparate data from opinion

• Provide a basis for your opinionProvide a basis for your opinion

• Consider carefully what you are willing Consider carefully what you are willing to do and not willing to doto do and not willing to do


• GGoalsoals

• OOptionsptions

• OOpinionpinion


GOOGOOD D - - DocumentationDocumentation

• Record the essence of the discussion and who Record the essence of the discussion and who participatedparticipated

• Current and future preferences and a few Current and future preferences and a few lines about the basis of these preferenceslines about the basis of these preferences

• It is not enough to write DNR or Full CodeIt is not enough to write DNR or Full Code

• Make important preferences easy to findMake important preferences easy to find

SufferingSuffering DeathDeath

DiseaseDisease

Three Players in the Illness Narrative:

Palliative Palliative CareCare

End of Life End of Life CareCare

Disease Disease Directed CareDirected Care

Three Areas of Care:



Disease & Disease & Palliative CarePalliative Care

Disease Disease Directed Directed

CareCare





CareCare

Disease & Disease & EOL CareEOL Care



Traditional Traditional HospiceHospice



CareCare






Comprehensive Comprehensive CareCare


CareCare


Vignettes?Vignettes?

Disease Directed Care

H.M. 68 year old woman Class III CHFCan’t golf anymoreEnjoys time with grandchildrenGood social and emotional supportChurch and family involved

“Life isn’t bad. I just take things as they come. I think about death sometimes, but I definitely want to see my grandchildren graduate from high school”

SufferingSuffering

DiseaseDisease

DeathDeath

Disease Disease Directed Directed CareCare

Palliative Care

R.B. 58 yo man12 year h/o idiopathic peripheral neuropathy causing sensation of burning and tightness in the feet. Minimal help from Neurontin and tricyclics. Now drinking rum each evening to be able to sleep.

Daughter states:“He doesn’t even go to his neurologist anymore- there’s nothing they can do”SufferingSuffering

DiseaseDisease

DeathDeath


Disease Directed with Palliative Care

C.B. 42 yo womanStage IV breast cancerBone pain, gastric outlet obstructionExperimental protocolWants any available treatmentEmotional suffering due to

illness stigmadisfigurement 2° surgery

“This is a tough battle, but its one that I mean to play out until the end. I’m a fighter.”

SufferingSuffering

DiseaseDisease

DeathDeath


End of Life Care

L.V. 48 yo manFather and brother died of Huntington’s Disease, patient is showing early signsFunction not impaired, working as a lawyerLives alone, talks to sister for support

“There is no question in my mind. I can’t live through that experience like they did. I just can’t go that way. ” SufferingSuffering

DiseaseDisease

DeathDeath

End of End of Life CareLife Care

Traditional Hospice

S.K. 73 yo womanEnd stage COPDOxygen dependent, can’t walk a full block, nebulizer provides minimal reliefAdvanced care plan to limit invasive measures (no hospitalization)PMD recently recommended hospice

“I’m so tired. My daughter has to do everything anymore.”

SufferingSuffering

DiseaseDisease

DeathDeath


Disease Directed Care with End of Life CareL.M. 65 yo womanRecently diagnosed with Multiple MyelomaPreviously very active, socialLong history of depression and anxiety, on multiple medications. Accepted treatment for MMWanted no aggressive measures

At the time of diagnosis:“I feel like this is it for me.”

SufferingSuffering

DiseaseDisease

DeathDeath


Terminal Illness Care

J.D. 67 yo veteranESLD, severe osteoarthritisCompliant with medications, wants to remain on transplant listMore afraid of pain than he is of death.Needs a great deal of social support, however not in hospice due to desire for transplant.

“I’ve lived my life. I’d like to live longer, but it may not work out that way.”

SufferingSuffering

DiseaseDisease

DeathDeath

Terminal Terminal Illness CareIllness Care

QUESTIONS?QUESTIONS?

• How tall are you?How tall are you? 6’1/2”6’1/2”

• Why do you pronounce the “K” in Why do you pronounce the “K” in your last name?your last name?

It’s Dutch.It’s Dutch.

• Do you play basketball?Do you play basketball?No.No.

“Vignette” Illness with Palliative Care

C.B. 48 yo womanStage IV breast cancerBone pain, gastric outlet obstructionExperimental protocolWants any available treatmentEmotional suffering due to

illness stigmadisfigurement 2° surgery

“This is a tough battle, but its one that I mean to play out until the end. I’m a fighter.”

PalliativePalliativeCareCare

Disease DirectedDisease DirectedTherapyTherapy

Desire to Desire to Hasten DeathHasten Death


Desire to Desire to Hasten Hasten DeathDeath

TraditiTraditional onal HospiceHospice

Illness with Illness with Palliative Palliative CareCare TerminTermin

al al Illness Illness CareCare

Disease Disease DirecteDirected d TherapTherapyy Illness Illness

with with DHDDHD

MethodsMethodsWe searched MEDLINE from 1986 – 2004:We searched MEDLINE from 1986 – 2004:

• headings that included: patient preferences, chronic headings that included: patient preferences, chronic illness (in conjunction with terms such as congestive illness (in conjunction with terms such as congestive heart failure, COPD, renal failure, liver failure), heart failure, COPD, renal failure, liver failure), end-of-life, hospice, palliative care, disease-directed end-of-life, hospice, palliative care, disease-directed therapy, resuscitation, hastened death, and therapy, resuscitation, hastened death, and physician-assisted suicide.physician-assisted suicide.

• Bibliographies of relevant papers were reviewed for Bibliographies of relevant papers were reviewed for additional data sources. additional data sources.

Documents

Determining Preferences for Care