1

The Caregiver’s The Caregiver’s Path: Path:

Kind Decision Kind Decision MakingMaking

Viki Kind, MAViki Kind, MATheCaregiversPath.coTheCaregiversPath.co

mmkindethics@gmail.com kindethics@gmail.com

KindEthics.comKindEthics.com805-807-4474805-807-4474

BB L L I I F EF E OO D D EE A T H A T H TT HH B B I I R T HR T H CC SS 

2

Core Question #1: Does the individual Core Question #1: Does the individual have the ability to make his or her own have the ability to make his or her own

decisions?decisions? 1. Does the patient realize there is a decision that 1. Does the patient realize there is a decision that

needs to be made?needs to be made? 2. Can the patient understand what is being said 2. Can the patient understand what is being said

about the disease and the treatment options? about the disease and the treatment options? 3. Can the patient understand the consequences of 3. Can the patient understand the consequences of

each of the different options, including the option to each of the different options, including the option to do nothing? do nothing?

4. Can the patient think about what he or she wants 4. Can the patient think about what he or she wants to do based on his or her own values/beliefs and how to do based on his or her own values/beliefs and how the choices would affect his or her life? the choices would affect his or her life?

5. Can the patient communicate his or her decision 5. Can the patient communicate his or her decision to the doctor and explain why he or she has made to the doctor and explain why he or she has made this decision? (Even if an alternate means of this decision? (Even if an alternate means of communication needs to be used.)communication needs to be used.)

3

Core Question #2: If the person is not able Core Question #2: If the person is not able to speak for him- or herself, how long will it to speak for him- or herself, how long will it

last?last?

1. Permanent—the person will never regain 1. Permanent—the person will never regain the ability to make his or her own decisionsthe ability to make his or her own decisions

2. Temporary—the person may get better 2. Temporary—the person may get better 3. Fluctuating Capacity—sometimes the 3. Fluctuating Capacity—sometimes the

person has capacity, and sometimes he or person has capacity, and sometimes he or she does notshe does not

If it is fluctuating, you will need to use the If it is fluctuating, you will need to use the right tools based on the person’s condition right tools based on the person’s condition that daythat day

Based on the doctor’s evaluation, the family Based on the doctor’s evaluation, the family can begin planning for the short or long termcan begin planning for the short or long term

4

Care-grieving?Care-grieving?

GriefGrief AngerAnger SadnessSadness Fear Fear ExhaustionExhaustion LonelinessLoneliness WithdrawingWithdrawing Short temperedShort tempered Worn out: physically, emotionally, Worn out: physically, emotionally,

financiallyfinancially Can’t bear to face the futureCan’t bear to face the future

5

The Decision-Making The Decision-Making FrameworkFramework

FramewFrameworkork

RankingRanking DefinitionDefinition

AutonomAutonomyy

Best Best optionoption

Autonomy means a person with Autonomy means a person with decisional capacity is allowed to decisional capacity is allowed to make decisions about what will make decisions about what will happen to his or her own body. happen to his or her own body.

SubstituSubstituted ted JudgmenJudgmentt

22ndnd best best optionoption

Substituted Judgment is used when Substituted Judgment is used when the person has lost decisional the person has lost decisional capacity. Someone else will make capacity. Someone else will make the decisions based on the the decisions based on the patient’s values and wishes.patient’s values and wishes.

Best Best Interest Interest StandarStandardd

33rdrd best best optionoption

A decision maker and/or the A decision maker and/or the healthcare team, who may or may healthcare team, who may or may not know the patient, will make the not know the patient, will make the decision without the benefit of decision without the benefit of knowing what the patient would knowing what the patient would want. What would a generic or want. What would a generic or reasonable person want in this reasonable person want in this situation? situation?

6

Substituted JudgmentSubstituted Judgment The decision maker is supposed to step into The decision maker is supposed to step into

the patient’s life and speak with the the patient’s life and speak with the patient’s voice—not their own voice patient’s voice—not their own voice

““What would the person be telling us if he What would the person be telling us if he or she were able to speak right now?” or she were able to speak right now?”

Consider all that is known about the Consider all that is known about the person, what she has said in the past, what person, what she has said in the past, what her values are, and what would be her values are, and what would be important to herimportant to her

Using this information, make the decision Using this information, make the decision you think the person would makeyou think the person would make

Platinum RulePlatinum Rule

7

Best Interest StandardBest Interest Standard

When we don’t know what a patient would When we don’t know what a patient would want or we can’t find someone to speak for the want or we can’t find someone to speak for the person person

This is the worst option as someone must guess This is the worst option as someone must guess what is in the best interest of the patient what is in the best interest of the patient

““What would a reasonable person want in this What would a reasonable person want in this situation?” Or, “What would a generic person situation?” Or, “What would a generic person want?”want?”

Better to Better to make these decisions as a groupmake these decisions as a group in order to have a variety of people express in order to have a variety of people express their opinions about what a reasonable person their opinions about what a reasonable person would want. would want.

8

Using the Best Interest Using the Best Interest StandardStandard

Talk to the caregiver about basic preferences, signs Talk to the caregiver about basic preferences, signs of comfort or discomfort, and how to communicate of comfort or discomfort, and how to communicate

1. Ask all the necessary medical/factual questions in 1. Ask all the necessary medical/factual questions in order to make an informed decision. order to make an informed decision.

2. Ask quality-of-life questions. How has the patient’s 2. Ask quality-of-life questions. How has the patient’s quality of life changed because of the current medical quality of life changed because of the current medical situation. Will the treatment being considered improve situation. Will the treatment being considered improve the person’s quality of life? Is the patient suffering? the person’s quality of life? Is the patient suffering? What will the decision mean to the patient’s future living What will the decision mean to the patient’s future living situation? situation?

3. Once a decision is made, have the physician document 3. Once a decision is made, have the physician document the decision. the decision.

4. After making the decision, 4. After making the decision, continually reevaluate continually reevaluate and adjust the planand adjust the plan depending on the patient’s depending on the patient’s condition. Stay in communication with the healthcare condition. Stay in communication with the healthcare team. team.

9

Draw a Picture with Your Draw a Picture with Your WordsWords

Person-Centered Communication: Person-Centered Communication: “What will it “What will it feel like and be like for the person to feel like and be like for the person to experience our choices?”experience our choices?” What are the What are the benefits, risks and benefits, risks and burdensburdens?? What it is like to be on a ventilator, have a What it is like to be on a ventilator, have a

feeding tube, or experience CPR? feeding tube, or experience CPR? What will it feel like for the patient: pain, What will it feel like for the patient: pain,

suffering, being able to recognize loved ones, suffering, being able to recognize loved ones, etc.etc.

What are the worst case scenarios?What are the worst case scenarios? What are the most common negative What are the most common negative

outcomes?outcomes?

Short term vs. Long term - “And then Short term vs. Long term - “And then what?”what?”

10

What Makes A Life Worth What Makes A Life Worth Living?Living?

We need to adjust our view of what constitutes a good lifeWe need to adjust our view of what constitutes a good life They are unique individuals. They are not just some They are unique individuals. They are not just some

generic incapacitated person generic incapacitated person Just because we might not want to live like they do, Just because we might not want to live like they do,

doesn’t mean that they are not experiencing a good lifedoesn’t mean that they are not experiencing a good life Step inside their existence to feel what brings this Step inside their existence to feel what brings this

individual happiness, comfort and a meaningful life. individual happiness, comfort and a meaningful life. Value in being able to return to same familiar Value in being able to return to same familiar

environment with familiar smells, familiar noises, familiar environment with familiar smells, familiar noises, familiar caregivers and a familiar schedule. caregivers and a familiar schedule.

We need to be careful as their bodies will experience the We need to be careful as their bodies will experience the consequences of our decisions. We need to protect them consequences of our decisions. We need to protect them as they are not be able to speak for themselves.as they are not be able to speak for themselves.

Evaluate the quality of life by the patient’s standardsEvaluate the quality of life by the patient’s standards

11

Core Question #5: About how old is the Core Question #5: About how old is the person developmentally? What is his or person developmentally? What is his or

her mental age?her mental age?

Whether you estimated the person’s mental Whether you estimated the person’s mental age or the patient has been given a formal age or the patient has been given a formal evaluation, the answer will fit into one of these evaluation, the answer will fit into one of these categories categories

These age ranges will help guide you as you These age ranges will help guide you as you begin to use the Shared Decision Making begin to use the Shared Decision Making ModelModel

0-6 years old?0-6 years old? 7-13 years old?7-13 years old? 14-17 years old?14-17 years old?

12

The Shared Decision Making The Shared Decision Making ModelModel

ApproximaApproximatete

Develop-Develop-

mental mental AgeAge

Decision Decision Making Making ToolTool

With adults, who participates?With adults, who participates?

Age 0–6 Age 0–6 Decision Decision Maker’s Maker’s ConsentConsent

The patient’s decision maker uses The patient’s decision maker uses Substituted Judgment or the Best Substituted Judgment or the Best Interest Standard. Interest Standard.

Age 7-13Age 7-13 AssentAssent The decision maker, with the help The decision maker, with the help of the doctor if needed, talks to the of the doctor if needed, talks to the patient about the medical decisions patient about the medical decisions and gets the patient’s and gets the patient’s assent/dissent. The decision maker assent/dissent. The decision maker gives the final consent. gives the final consent.

Age 14-17Age 14-17 ConsentConsent If the patient has enough capacity, If the patient has enough capacity, the patient uses autonomy and the patient uses autonomy and makes the decisions. If not, you makes the decisions. If not, you move back up one level and use move back up one level and use Assent.Assent.

13

The Sliding Scale for Decision The Sliding Scale for Decision MakingMaking

How serious is this situation and is it safe for the How serious is this situation and is it safe for the

person to participate?person to participate? No No capacitcapacityy

A little A little bit of bit of capacitycapacity

Some Some capacitycapacity

Almost Almost full full capacitycapacity

Full Full capacitycapacity

No No decisiodecision n makingmaking

Some Some small small decisiondecisionss

Daily Daily decisions decisions and some and some voice in voice in medical medical decisions, decisions, but not but not life-and-life-and-death death decisionsdecisions

Larger Larger voice in voice in importanimportant t decisionsdecisions

Full voice Full voice in his or in his or her own her own decisions, decisions, including including life-and-life-and-death death decisionsdecisions

14

A Non-Life-Threatening A Non-Life-Threatening DecisionDecision

Age 0-6Age 0-6 Age 7-Age 7-1313

Age14-Age14-1717

No No capacitycapacity

A little A little bit of bit of capacitycapacity

Some Some capacitycapacity

Almost Almost full full capacitycapacity

Full Full capacitycapacity

No No partici-partici-pationpation

No No partici-partici-pationpation

Will ask Will ask for the for the patient’patient’s assent s assent or or dissent dissent

Will ask Will ask for the for the patient’s patient’s assent or assent or dissent dissent

Patient Patient can can make his make his or her or her own own decisions decisions

15

Steps to Asking for Steps to Asking for Assent/DissentAssent/Dissent

1. Evaluate the person’s mental age, maturity level, 1. Evaluate the person’s mental age, maturity level, psychological condition and ability to give psychological condition and ability to give assent/dissent. assent/dissent.

2. Allow enough time to use an alternate method of 2. Allow enough time to use an alternate method of communication. You may need to slow down and communication. You may need to slow down and repeat yourself a number of times. The person may repeat yourself a number of times. The person may need multiple meetings with the doctor before he or need multiple meetings with the doctor before he or she can understand what is being discussed. Don’t get she can understand what is being discussed. Don’t get frustrated as the person is doing the best he or she frustrated as the person is doing the best he or she can.can.

3. Using developmentally appropriate language 3. Using developmentally appropriate language (language the patient can understand), give the (language the patient can understand), give the person the necessary information about his or her person the necessary information about his or her illness. Don’t use complicated medical terms or tell illness. Don’t use complicated medical terms or tell the individual too much all at once. You may want to the individual too much all at once. You may want to use pictures, a video or a simply written handout.use pictures, a video or a simply written handout.

16

Continued…Continued… 4. Give the person the details of the proposed treatment, 4. Give the person the details of the proposed treatment,

test or surgery. Explain what the experience will be like test or surgery. Explain what the experience will be like from the patient’s perspective.from the patient’s perspective. What will it be like for the patient to experience the What will it be like for the patient to experience the

proposed treatment, test or surgery? Where will the proposed treatment, test or surgery? Where will the test take place? test take place?

Will the test hurt? Will the patient be left alone or can Will the test hurt? Will the patient be left alone or can you stay with your loved one during the procedure? you stay with your loved one during the procedure?

Even if the patient can’t give assent, the person Even if the patient can’t give assent, the person should be informed about what will be happening at should be informed about what will be happening at the hospital or the doctor’s officethe hospital or the doctor’s office

5. If the person says yes, be careful that the person isn’t 5. If the person says yes, be careful that the person isn’t just saying that to make you happy. Make sure that the just saying that to make you happy. Make sure that the person really understands what is being discussed. person really understands what is being discussed.

6. If the patient doesn’t understand what you are talking 6. If the patient doesn’t understand what you are talking about, then try again. If the person still can’t about, then try again. If the person still can’t understand, then you shouldn’t use assent. You will understand, then you shouldn’t use assent. You will need to make the decision as if this individual is need to make the decision as if this individual is developmentally 0-6.developmentally 0-6.

17

Emotional MemoryEmotional Memory

18

Using the Tools TogetherUsing the Tools Together

1. Think back to the Decision Making 1. Think back to the Decision Making Framework and determine if you will be using Framework and determine if you will be using Substituted Judgment or the Best Interest Substituted Judgment or the Best Interest Standard Standard

2. Look at the Shared Decision Making Model 2. Look at the Shared Decision Making Model to determine how much the person should be to determine how much the person should be involved in the decision making process involved in the decision making process

3. Check with the Sliding Scale of Decision 3. Check with the Sliding Scale of Decision Making to decide how serious the decision is Making to decide how serious the decision is that you need to make and how you should that you need to make and how you should proceed proceed

4.4. Use Assent if the person’s mental age is in Use Assent if the person’s mental age is in the range of 7-13 and it is safe for the person the range of 7-13 and it is safe for the person to participate in the decision-making process to participate in the decision-making process

19

A Life-or-Death DecisionA Life-or-Death DecisionAge 0-6Age 0-6 Age 7-13Age 7-13 Age14-17Age14-17

No No capacitycapacity

A little A little bit of bit of capacitycapacity

Some Some capacitycapacity

Almost Almost full full capacitycapacity

Full Full capacitycapacity

No No participaparticipa-tion-tion

No No participparticipa-tiona-tion

Patient will Patient will not be not be allowed to allowed to make life-make life-and-death and-death decisions. decisions. Will Will notnot ask for ask for assent as assent as this is life this is life and death.and death.

Patient Patient can can probably probably make less make less risky risky decisionsdecisions, but will , but will not ask not ask for for assent as assent as this is life this is life and and death death

Patient Patient can make can make life-and life-and death-death-decisions decisions

20

Be Careful…Be Careful… A life-and-death situation doesn’t mean that all A life-and-death situation doesn’t mean that all

treatments are worth the chance treatments are worth the chance Balance the risks/burdens versus the benefitsBalance the risks/burdens versus the benefits Some treatments have no chance of working or Some treatments have no chance of working or

the suffering will be so severe from the the suffering will be so severe from the treatment that it isn’t worth ittreatment that it isn’t worth it

When decisions are made for children, the When decisions are made for children, the treatment has to have a great enough chance treatment has to have a great enough chance of success to justify putting the child through of success to justify putting the child through the toxic side effects the toxic side effects

And, remember to use Substituted Judgment if And, remember to use Substituted Judgment if appropriate. Would the patient would want to appropriate. Would the patient would want to take the chance and endure the suffering?take the chance and endure the suffering?

21

Pitfalls in DNR Decision Pitfalls in DNR Decision MakingMaking

1. Patients don’t understand what really 1. Patients don’t understand what really happens during CPRhappens during CPR

2. Patients think it works just like on television2. Patients think it works just like on television 3. Patients don’t understand that they may 3. Patients don’t understand that they may

come back to life in a worse condition than they come back to life in a worse condition than they were in before, both mentally and physicallywere in before, both mentally and physically

4. Patients don’t understand that the type of 4. Patients don’t understand that the type of death they are choosing is probably not what death they are choosing is probably not what they would want if they understoodthey would want if they understood

5. The decision maker won’t sign the DNR 5. The decision maker won’t sign the DNR because of his or her own guilt, grief, because of his or her own guilt, grief, desperation etc. desperation etc.

6. MD’s thinking the CPR decision tells them 6. MD’s thinking the CPR decision tells them everything they need to know about a patient’s everything they need to know about a patient’s end-of-life wishes – It only tells them one part end-of-life wishes – It only tells them one part

22

Medical Decision Making Medical Decision Making ToolsTools

Questions to Ask When Making Medical DecisionsQuestions to Ask When Making Medical Decisions www.TheCaregiversPath.com on resource pagewww.TheCaregiversPath.com on resource page

Go Wish CardsGo Wish Cards www.gowish.org (English and www.gowish.org (English and Spanish)Spanish)

Insider’s Guide to Filling Out Your Advance Insider’s Guide to Filling Out Your Advance DirectiveDirective www.TheCaregiversPath.com on resource www.TheCaregiversPath.com on resource pagepage

Thinking Ahead ProjectThinking Ahead Project http://www.coalitionccc.org http://www.coalitionccc.org (English, Spanish, Korean, Chinese)(English, Spanish, Korean, Chinese)

Pre-hospital DNR = “POLST”Pre-hospital DNR = “POLST” www.CAPOLST.org www.CAPOLST.org and www.POLST.org (multiple languages including and www.POLST.org (multiple languages including Braille)Braille)

Consider the ConversationConsider the Conversation – documentary about – documentary about making the decisions meaningful making the decisions meaningful www.considertheconversation.org www.considertheconversation.org

23

Additional ResourcesAdditional Resources Kindness RemindersKindness Reminders: Free weekly ideas to help : Free weekly ideas to help

you to show love and support to a loved one. you to show love and support to a loved one. (Especially helpful for those doing long distance (Especially helpful for those doing long distance caregiving.) Go to www.KindEthics.com and sign caregiving.) Go to www.KindEthics.com and sign up in the box in the upper right hand corner. up in the box in the upper right hand corner.

Well Spouse AssociationWell Spouse Association: A wonderful website, : A wonderful website, chat room, and support system for spouses, chat room, and support system for spouses, partners and significant others. partners and significant others. www.wellspouse.org www.wellspouse.org

The Caregiver’s Path Community – The Caregiver’s Path Community – An online An online support and education community for caregivers support and education community for caregivers www.TheCaregiversPathCommunity.com www.TheCaregiversPathCommunity.com

The Caregiver’s Path to Compassionate The Caregiver’s Path to Compassionate Decision Making: Making Choices for Those Decision Making: Making Choices for Those Who Can’tWho Can’t by Viki Kind by Viki Kind

How to Say it to Seniors How to Say it to Seniors by David Solieby David Solie