communication of healthcare and end-of- life wishes through person-centered practices: a short...
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Communication of Communication of Healthcare and End-of-Healthcare and End-of-
Life Wishes Through Life Wishes Through Person-Centered Person-Centered Practices: A Short Practices: A Short
OverviewOverview
Leigh Ann Creaney Kingsbury, MPA, GerontologistLeigh Ann Creaney Kingsbury, MPA, GerontologistInLeadS, Inc. Consulting and Training;InLeadS, Inc. Consulting and Training;
Author, Author, People Planning AheadPeople Planning Ahead
““If we have these If we have these conversations, the conversations, the
person will die…..if we person will die…..if we do not have these do not have these conversations, the conversations, the
person will person will stillstill die!” die!”Ellen Cameron, Lower Cape Fear Ellen Cameron, Lower Cape Fear
HospiceHospice
The Answer is:The Answer is:
Sex and End Sex and End of Life!of Life!
Why We’re Having This Why We’re Having This ConversationConversation
People with disabilities are living People with disabilities are living longer and aginglonger and aging
Self determination is about all of Self determination is about all of one’s life…..one’s life…..from beginning to endfrom beginning to end
We help people plan their lives…why We help people plan their lives…why would we not help people plan around would we not help people plan around the end of their lives?the end of their lives?
It makes no sense to wait until the It makes no sense to wait until the 1111thth hour hour
We must consider that death is not We must consider that death is not always “an incident”…only to be always “an incident”…only to be
investigated and documented on a investigated and documented on a form.form.
It is the final passage of one’s life…It is the final passage of one’s life…
Who Are We Planning With?Who Are We Planning With?
People who are young and healthy and need People who are young and healthy and need to consider surrogate decision makingto consider surrogate decision making
People whose age and/or health is the issue People whose age and/or health is the issue at hand. A critical illness or progressive at hand. A critical illness or progressive disability may impact their healthcare, the disability may impact their healthcare, the treatment they receive and the need for treatment they receive and the need for decision making; decision making; they do not have terminal they do not have terminal illnessillness
People who have a diagnosed terminal illness People who have a diagnosed terminal illness and may die within 6 months to a yearand may die within 6 months to a year
RitualsRituals The power of rituals in our livesThe power of rituals in our lives Rituals often viewed as “behavior” or Rituals often viewed as “behavior” or
“maladaptive” for persons with “maladaptive” for persons with disabilitiesdisabilities
Rituals to considerRituals to consider– ComfortComfort - Spiritual- Spiritual– TransitionTransition - Cultural- Cultural– Daily/WeeklyDaily/Weekly - Family- Family– HolidayHoliday
The Role Of Person-Centered-The Role Of Person-Centered-PlanningPlanning
identify elements of the person’s life identify elements of the person’s life that are important and should not be that are important and should not be forgotten or ignored when he/she is forgotten or ignored when he/she is critically ill and/or dyingcritically ill and/or dying
help clarify what is important to the help clarify what is important to the person and what is important for the person and what is important for the personperson
The Role Of Person-Centered-The Role Of Person-Centered-PlanningPlanning
identify rituals that may bring identify rituals that may bring comfort to someone who is dying or comfort to someone who is dying or is grievingis grieving
communicate well ahead of time the communicate well ahead of time the people, documents, places, rituals, people, documents, places, rituals, etc. the person wants in place during etc. the person wants in place during the illness, while the disability the illness, while the disability progresses and/or at his/her deathprogresses and/or at his/her death
The Role Of Person-Centered-The Role Of Person-Centered-PlanningPlanning
help staff sort through and define their help staff sort through and define their roles and responsibilitiesroles and responsibilities
maintain autonomy at a time when there maintain autonomy at a time when there are many, many other well intentioned are many, many other well intentioned people and professionals involvedpeople and professionals involved
supports informed decision making for the supports informed decision making for the personperson
Critical Issues to ConsiderCritical Issues to Consider
CapacityCapacityPresumed IncapacityPresumed IncapacitySurrogate Decision MakingSurrogate Decision MakingGuardianshipGuardianship
~ Capacity ~~ Capacity ~Is the person capable?Is the person capable?
Kingsbury; InLeadS Consulting and Kingsbury; InLeadS Consulting and
Training 2006Training 2006
CapacityCapacity““Decisional capacity” is a Decisional capacity” is a clinical clinical
term…term…often determined by often determined by clinicians (healthcare) professionals clinicians (healthcare) professionals
in clinical settings by performing in clinical settings by performing some kind of “decision-making some kind of “decision-making
capacity assessment”capacity assessment”
But…………But…………Gunderson Lutheran Medical Gunderson Lutheran Medical
Foundation, 2000Foundation, 2000
Kingsbury; InLeadS Consulting and Kingsbury; InLeadS Consulting and
Training 2006Training 2006
……the problem is…the problem is…
there are currently there are currently no decision-no decision-making capacity assessmentmaking capacity assessment tools for tools for people with intellectual or people with intellectual or developmental disabilities (not that developmental disabilities (not that we would want them…!) we would want them…!)
not only “health professionals” can not only “health professionals” can determine capacitydetermine capacity
……the problem is…the problem is…
People with ID/DD are often People with ID/DD are often presumed to be incapable presumed to be incapable (incapacitated) from the start without (incapacitated) from the start without any assessmentany assessment
Capacity “assessments” are often Capacity “assessments” are often not relevant to the decision at hand not relevant to the decision at hand (Barbara’s story)(Barbara’s story)
Four Components of CapacityFour Components of CapacityGunderson Lutheran Medical Foundation, 2000; Applebaum, 2007Gunderson Lutheran Medical Foundation, 2000; Applebaum, 2007
1.1. The ability to understand that one has The ability to understand that one has authority—that there is a choice to be authority—that there is a choice to be mademade
2.2. The ability to understand the information: The ability to understand the information: to understand the risks and benefits; and to understand the risks and benefits; and to understand what happens if one does or to understand what happens if one does or does not make a certain choice does not make a certain choice
3.3. The ability to communicate a decision and The ability to communicate a decision and the reason for that decisionthe reason for that decision
4.4. The ability to make a decision which is The ability to make a decision which is consistent with one’s values and goals and consistent with one’s values and goals and which remains consistent over timewhich remains consistent over time
10 Myths of Capacity10 Myths of CapacityGanzini, Volicer, Nelson Fox and Derse, JAMDA – July/August 2004Ganzini, Volicer, Nelson Fox and Derse, JAMDA – July/August 2004
1.1. Decision-making capacity and Decision-making capacity and competency are the same thingcompetency are the same thing
2.2. Lack of capacity can be presumed if the Lack of capacity can be presumed if the person doesn’t follow medical adviceperson doesn’t follow medical advice
3.3. There is no reason to assess capacity There is no reason to assess capacity unless the person goes against medical unless the person goes against medical adviceadvice
4.4. Capacity is a “all or nothing” Capacity is a “all or nothing” phenomenonphenomenon
10 Myths, continued10 Myths, continuedGanzini, Volicer, Nelson Fox and Derse, JAMDA – July/August 2004Ganzini, Volicer, Nelson Fox and Derse, JAMDA – July/August 2004
5.5. Having a cognitive impairment is equal Having a cognitive impairment is equal to “lack of decision-making capacity”to “lack of decision-making capacity”
6.6. Lack of capacity is a permanent situationLack of capacity is a permanent situation
7.7. People who do not have relevant and People who do not have relevant and consistent information about their consistent information about their situation and treatment lack capacitysituation and treatment lack capacity
10 Myths, continued10 Myths, continuedGanzini, Volicer, Nelson Fox and Derse, JAMDA – July/August 2004Ganzini, Volicer, Nelson Fox and Derse, JAMDA – July/August 2004
8.8. People with certain psychiatric diagnoses People with certain psychiatric diagnoses lack decision making capacitylack decision making capacity
9.9. People who are involuntarily committed People who are involuntarily committed to a psychiatric facility lack capacityto a psychiatric facility lack capacity
10.10. Only mental health experts can assess a Only mental health experts can assess a person's capacityperson's capacity
Presumed IncapacityPresumed Incapacity
This is one reason not to do this at This is one reason not to do this at the 11the 11thth hour hour
It helps to have the person’s doctors It helps to have the person’s doctors and therapists as alliesand therapists as allies
Be able to demonstrate how the Be able to demonstrate how the person makes decisions and again, person makes decisions and again, what decisions the person routinely what decisions the person routinely makesmakes– Consider using Decision Agreements or Consider using Decision Agreements or
ProfilesProfiles
Surrogate Decision MakingSurrogate Decision MakingWho will make a decision if the person cannot or in Who will make a decision if the person cannot or in
the absence of advance directives?the absence of advance directives?
Guardian/ConservatorGuardian/Conservator Spouse/Domestic Partner Spouse/Domestic Partner (in few states)(in few states)
Adult ChildAdult Child ParentParent Adult SiblingAdult Sibling Next Living RelativeNext Living Relative
Identifying a Surrogate Decision Maker
Know your state’s legislation; many states rule out healthcare providers and employees of healthcare providers
Who does the person have a relationship with?
Who does the person trust? Who loves and cares about the person as a
person (and not just someone who receives services)?
Information the Planners and Information the Planners and Surrogate Decision Makers Need Surrogate Decision Makers Need
to Find Out:to Find Out:Adapted from “The 5 Wishes”Adapted from “The 5 Wishes”
Whom does the person wish to have as Whom does the person wish to have as substitute decision maker?substitute decision maker?
What kinds of treatment does the person What kinds of treatment does the person want and not want?want and not want?
How does the person wish to be How does the person wish to be comfortable?comfortable?
How does the person wish to be treated?How does the person wish to be treated? Is there anything the person wants to tell Is there anything the person wants to tell
loved ones?loved ones?
Living wills and Advance Living wills and Advance DirectivesDirectives
Living WillLiving Will
Document that indicates some of Document that indicates some of your wishes; standardized forms are your wishes; standardized forms are most often about terminal illness, most often about terminal illness, intubation and CPRintubation and CPR
You can add other informationYou can add other information Does notDoes not identify a substitute identify a substitute
decision makerdecision maker
Advance DirectiveAdvance Directive
Includes the person’s living willIncludes the person’s living will
Most importantly, it identifies the Most importantly, it identifies the substitute decision maker(s)….the substitute decision maker(s)….the “durable healthcare power of “durable healthcare power of attorney”attorney”
Critical PointsCritical Points
People must have the People must have the capacitycapacity to name a to name a Power of Attorney; if the person already Power of Attorney; if the person already
has a guardian he/she cannot name a power has a guardian he/she cannot name a power of attorneyof attorney
Therefore, the person cannot have an Therefore, the person cannot have an Advance DirectiveAdvance Directive
But we should still know what is But we should still know what is important to that person and what their important to that person and what their personal goals are for their healthcare personal goals are for their healthcare
and their lifeand their life
What We’re LearningWhat We’re Learning
Future healthcare and end of life Future healthcare and end of life conversations are really emotionalconversations are really emotional– we must build in a process for following up and we must build in a process for following up and
staying connected to the person with whom staying connected to the person with whom we’re planningwe’re planning
People’s experiences are frequently People’s experiences are frequently quite limitedquite limited—we need ways to better —we need ways to better explain what we’re talking aboutexplain what we’re talking about
Some people with disabilities have Some people with disabilities have very clear ideas about what they want very clear ideas about what they want or do not wantor do not want
Learning continued…Learning continued…
Issues of faith, culture and religion Issues of faith, culture and religion are not being considered wellare not being considered well– Cynthia’s storyCynthia’s story
Medical professionals are unsure of Medical professionals are unsure of the “rules”…and even more so, the the “rules”…and even more so, the rights of people with disabilitiesrights of people with disabilities– ““The 10 Myths”The 10 Myths”
Learning, continued:Learning, continued:
There are There are hugehuge issuesissues surrounding surrounding substitute decision makingsubstitute decision making
People who have no non-paid support in People who have no non-paid support in their lives; decisions being left to people their lives; decisions being left to people who don’t know the personwho don’t know the person
People who are capable but deemed People who are capable but deemed incapableincapable
People who are perceived to be incapable People who are perceived to be incapable but are notbut are not
Learning continued…Learning continued…
We also need to better understand We also need to better understand how how a a person makes a decision and what person makes a decision and what decisions they are accustomed to makingdecisions they are accustomed to making
As systems of support, we’re often in the As systems of support, we’re often in the position to make decisions at the last position to make decisions at the last minute ~ we need to be teaching people minute ~ we need to be teaching people how to make big decisions; we need to be how to make big decisions; we need to be teaching people who provide services and teaching people who provide services and people who use servicespeople who use services
People Planning Ahead
One-day overviews; – an introduction to the topic and key issues
Two day training about using the guide– A combination of information from overview
and practice using the planning manual Three day (or more over time) skill
building – How to use the manual; how to address health
care decision making; coaching for new facilitators
For more information, consultation or For more information, consultation or assistance with assistance with
planning/training/development of facilitators, planning/training/development of facilitators, etc.,etc.,
please contact:please contact:Leigh Ann KingsburyLeigh Ann Kingsbury
THANK YOU!THANK YOU!