Communication of Healthcare and End-of-Life Wishes Through Person-Centered Practices: A Short Overview Leigh Ann Crean

1. Communication of Healthcare and End-of-Life Wishes Through Person-Centered Practices: A Short OverviewLeigh Ann Creaney Kingsbury, MPA, GerontologistInLeadS, Inc. Consulting and Training;Author, People Planning Ahead

2. �If we have these conversations, the person will die�..if we do not have these conversations, the person will still die!� Ellen Cameron, Lower Cape Fear Hospice remind people that whether we get over our discomfort and have these conversations or not, at some point the person will die�.our discomfort doesn�t stop the dying process The context for this conversation was a hospice social worker who was surprised that even at t he every end of life people avoid these conversationsremind people that whether we get over our discomfort and have these conversations or not, at some point the person will die�.our discomfort doesn�t stop the dying process The context for this conversation was a hospice social worker who was surprised that even at t he every end of life people avoid these conversations

3. The Answer is:Sex and End of Life! To the audience�..�here� the answer�, what�s the question. You�re looking for the �things we don�t talk about with people with disabilities� or something like thatTo the audience�..�here� the answer�, what�s the question. You�re looking for the �things we don�t talk about with people with disabilities� or something like that

4. Why We�re Having This Conversation People with disabilities are living longer and aging Self determination is about all of one�s life�..from beginning to end We help people plan their lives�why would we not help people plan around the end of their lives? It makes no sense to wait until the 11th hour for people who are unsure of why this is necessary (ok, so those folks are probably not at the training!) this is a good foundation; it also helps agency administrators understand the need for addressing the topicfor people who are unsure of why this is necessary (ok, so those folks are probably not at the training!) this is a good foundation; it also helps agency administrators understand the need for addressing the topic

5. We must consider that death is not always �an incident��only to be investigated and documented on a form.It is the final passage of one�s life� remind people that we do not have an answer for this issue�.this is a bigger systems issue�but as we begin to think about end of life for people who use services in our system, we need to consider how we treat it, how we treat the direct support professionals, etc.remind people that we do not have an answer for this issue�.this is a bigger systems issue�but as we begin to think about end of life for people who use services in our system, we need to consider how we treat it, how we treat the direct support professionals, etc.

6. Who Are We Planning With? People who are young and healthy and need to consider surrogate decision making People whose age and/or health is the issue at hand. A critical illness or progressive disability may impact their healthcare, the treatment they receive and the need for decision making; they do not have terminal illness People who have a diagnosed terminal illness and may die within 6 months to a year People really need to understand these 3 concepts; this is the basis for surrogate decision making and sorting through where people are and what information we need to plan with themPeople really need to understand these 3 concepts; this is the basis for surrogate decision making and sorting through where people are and what information we need to plan with them

7. Rituals The power of rituals in our lives Rituals often viewed as �behavior� or �maladaptive� for persons with disabilities Rituals to consider Comfort - Spiritual Transition - Cultural Daily/Weekly - Family Holiday

8. The Role Of Person-Centered-Planning identify elements of the person�s life that are important and should not be forgotten or ignored when he/she is critically ill and/or dying help clarify what is important to the person and what is important for the person

9. The Role Of Person-Centered-Planning identify rituals that may bring comfort to someone who is dying or is grieving communicate well ahead of time the people, documents, places, rituals, etc. the person wants in place during the illness, while the disability progresses and/or at his/her death

10. The Role Of Person-Centered-Planning help staff sort through and define their roles and responsibilities maintain autonomy at a time when there are many, many other well intentioned people and professionals involved supports informed decision making for the person

11. Critical Issues to Consider Capacity Presumed Incapacity Surrogate Decision Making Guardianship Issues that one may encounter in decision making and end of life situations; most people are familiar with guardianship but don�t know the difference b/t competency and capacityIssues that one may encounter in decision making and end of life situations; most people are familiar with guardianship but don�t know the difference b/t competency and capacity

12. Ask the group: what�s the difference between competency and capacity? See if they can tease out the issues of one if legal ~ requires court intervention and the other is a clinical judgementAsk the group: what�s the difference between competency and capacity? See if they can tease out the issues of one if legal ~ requires court intervention and the other is a clinical judgement

13. Capacity �Decisional capacity� is a clinical term�often determined by clinicians (healthcare) professionals in clinical settings by performing some kind of �decision-making capacity assessment� But���� Gunderson Lutheran Medical Foundation, 2000 briefly explain what kind of assessment might be used; if there is time, a psychologist might do an IQ exam (not that that is capacity); sometimes people do what is the old fashioned �reality orientation� kind of assessment (do you know what today�s date is? Who�s the president?�, etc�)briefly explain what kind of assessment might be used; if there is time, a psychologist might do an IQ exam (not that that is capacity); sometimes people do what is the old fashioned �reality orientation� kind of assessment (do you know what today�s date is? Who�s the president?�, etc�)

14. �the problem is� there are currently no decision-making capacity assessment tools for people with intellectual or developmental disabilities (not that we would want them�!) not only �health professionals� can determine capacity make sure people understand that there is not a �tool� or an assessment of some kind that will tell you if someone has decision-making capacity we are in the position of: needing to know how people make decisions on an individual basis and using reasonable and prudent professional judgment in deciding if someone has the capacity to make a specific decision make sure people understand that there is not a �tool� or an assessment of some kind that will tell you if someone has decision-making capacity we are in the position of: needing to know how people make decisions on an individual basis and using reasonable and prudent professional judgment in deciding if someone has the capacity to make a specific decision

15. �the problem is� People with ID/DD are often presumed to be incapable (incapacitated) from the start without any assessment Capacity �assessments� are often not relevant to the decision at hand (Barbara�s story) make sure people understand that there is not a �tool� or an assessment of some kind that will tell you if someone has decision-making capacity we are in the position of: needing to know how people make decisions on an individual basis and using reasonable and prudent professional judgment in deciding if someone has the capacity to make a specific decision make sure people understand that there is not a �tool� or an assessment of some kind that will tell you if someone has decision-making capacity we are in the position of: needing to know how people make decisions on an individual basis and using reasonable and prudent professional judgment in deciding if someone has the capacity to make a specific decision

16. Four Components of CapacityGunderson Lutheran Medical Foundation, 2000; Applebaum, 2007 The ability to understand that one has authority�that there is a choice to be made The ability to understand the information: to understand the risks and benefits; and to understand what happens if one does or does not make a certain choice The ability to communicate a decision and the reason for that decision The ability to make a decision which is consistent with one�s values and goals and which remains consistent over time As a way to help us evaluate however, and to be sure we are using reasonable and prudent judgment; since there is not an actual assessment process, we look to the literature. And there is standardized criteria for capacity.As a way to help us evaluate however, and to be sure we are using reasonable and prudent judgment; since there is not an actual assessment process, we look to the literature. And there is standardized criteria for capacity.

17. 10 Myths of CapacityGanzini, Volicer, Nelson Fox and Derse, JAMDA � July/August 2004 Decision-making capacity and competency are the same thing Lack of capacity can be presumed if the person doesn�t follow medical advice There is no reason to assess capacity unless the person goes against medical advice Capacity is a �all or nothing� phenomenon Make sure people have this as a handout�an 8X11 handout, not just as part of their power point handouts If you think we�re confused about this�..the group of people that we might turn to to help us figure it out, the medical community , is also confused! Read thru each one briefly and explain its meaning unless it is clearly self explanatoryMake sure people have this as a handout�an 8X11 handout, not just as part of their power point handouts If you think we�re confused about this�..the group of people that we might turn to to help us figure it out, the medical community , is also confused! Read thru each one briefly and explain its meaning unless it is clearly self explanatory

18. 10 Myths, continuedGanzini, Volicer, Nelson Fox and Derse, JAMDA � July/August 2004 Having a cognitive impairment is equal to �lack of decision-making capacity� Lack of capacity is a permanent situation People who do not have relevant and consistent information about their situation and treatment lack capacity 8X11 handout8X11 handout

19. 10 Myths, continuedGanzini, Volicer, Nelson Fox and Derse, JAMDA � July/August 2004 People with certain psychiatric diagnoses lack decision making capacity People who are involuntarily committed to a psychiatric facility lack capacity 10. Only mental health experts can assess a person's capacity 8X11 handout8X11 handout

20. Presumed Incapacity This is one reason not to do this at the 11th hour It helps to have the person�s doctors and therapists as allies Be able to demonstrate how the person makes decisions and again, what decisions the person routinely makes Consider using Decision Agreements or Profiles Tell Joe�s story: Joe receives services�..is in his mid-50�s with intellectual disabilities, and a very capable man most areas of his life, with some support. Goes to hospital b/c he is jaundiced�.turns out he needs to have emergency gall bladder surgery. He is his own guardian and is perfectly capable of making the decision to have surgery. Makes routine decisions every day and has made other less complicated medical decisions such as having a cavity filled or having a root canal Joe has been in the system for-evvver�..the surgeon gets hold of an old psychological which says �Joe has the mental age of a 7 year old�. Surgeon says �I can�t operate on this man�7 year olds can�t make these decisions��we ended up doing an emergency health care POA�.which actually was a joke b/c Joe named his agency director and trusted friend as the decision maker, and in fact, one cannot name one�s healthcare provider as one�s surrogate decision maker. Surgeon didn�t care�.he just wanted someone other than Joe (who has intellectual disabilities) to be on record as making the decision. Situations like this are another reason to not wait till the 11th hour to address healthcare decision making and end of life issues. Had we addressed this issue ahead of time and had we been having conversations with Joe�s general physician, we could have involved the GP to speak with the surgeon (sometimes dr. to dr. works much better)Tell Joe�s story: Joe receives services�..is in his mid-50�s with intellectual disabilities, and a very capable man most areas of his life, with some support. Goes to hospital b/c he is jaundiced�.turns out he needs to have emergency gall bladder surgery. He is his own guardian and is perfectly capable of making the decision to have surgery. Makes routine decisions every day and has made other less complicated medical decisions such as having a cavity filled or having a root canal Joe has been in the system for-evvver�..the surgeon gets hold of an old psychological which says �Joe has the mental age of a 7 year old�. Surgeon says �I can�t operate on this man�7 year olds can�t make these decisions��we ended up doing an emergency health care POA�.which actually was a joke b/c Joe named his agency director and trusted friend as the decision maker, and in fact, one cannot name one�s healthcare provider as one�s surrogate decision maker. Surgeon didn�t care�.he just wanted someone other than Joe (who has intellectual disabilities) to be on record as making the decision. Situations like this are another reason to not wait till the 11th hour to address healthcare decision making and end of life issues. Had we addressed this issue ahead of time and had we been having conversations with Joe�s general physician, we could have involved the GP to speak with the surgeon (sometimes dr. to dr. works much better)

21. Surrogate Decision MakingWho will make a decision if the person cannot or in the absence of advance directives? Guardian/Conservator Spouse/Domestic Partner (in few states) Adult Child Parent Adult Sibling Next Living Relative Walk people thru who will be making decisions for them if they have not chosen someone Point out that �group home manager� IS NOT on the list! Or for that matter, anyone in the service system!Walk people thru who will be making decisions for them if they have not chosen someone Point out that �group home manager� IS NOT on the list! Or for that matter, anyone in the service system!

22. 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)?

23. Information the Planners and Surrogate Decision Makers Need to Find Out:Adapted from �The 5 Wishes� Whom does the person wish to have as substitute decision maker? What kinds of treatment does the person want and not want? How does the person wish to be comfortable? How does the person wish to be treated? Is there anything the person wants to tell loved ones?

24. Be sure to tell the audience that a living will is usually only for CPR/intubation and terminal illness unless the writer chooses to add more and it DOES NOT name a surrogate decision maker. Advance directives include one�s living will, and spell out one�s wishes in more detail and also name a surrogate decision maker (usually with a couple of back up options).Be sure to tell the audience that a living will is usually only for CPR/intubation and terminal illness unless the writer chooses to add more and it DOES NOT name a surrogate decision maker. Advance directives include one�s living will, and spell out one�s wishes in more detail and also name a surrogate decision maker (usually with a couple of back up options).

25. Living Will Document that indicates some of your wishes; standardized forms are most often about terminal illness, intubation and CPR You can add other information Does not identify a substitute decision maker help people understand the differences b/t living will and advance directivehelp people understand the differences b/t living will and advance directive

26. Advance Directive Includes the person�s living will Most importantly, it identifies the substitute decision maker(s)�.the �durable healthcare power of attorney� Clearly point out that an AD identifies the health care power of attorney Clearly point out that an AD identifies the health care power of attorney

28. What We�re Learning Future healthcare and end of life conversations are really emotional we must build in a process for following up and staying connected to the person with whom we�re planning People�s experiences are frequently quite limited�we need ways to better explain what we�re talking about Some people with disabilities have very clear ideas about what they want or do not want

29. Learning continued� Issues of faith, culture and religion are not being considered well Cynthia�s story Medical professionals are unsure of the �rules��and even more so, the rights of people with disabilities �The 10 Myths�

30. Learning, continued:There are huge issues surrounding substitute decision making People who have no non-paid support in their lives; decisions being left to people who don�t know the person People who are capable but deemed incapable People who are perceived to be incapable but are not

31. Learning continued� We also need to better understand how a person makes a decision and what decisions they are accustomed to making As systems of support, we�re often in the position to make decisions at the last minute ~ we need to be teaching people how to make big decisions; we need to be teaching people who provide services and people who use services

33. 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

34. For more information, consultation or assistance with planning/training/development of facilitators, etc.,please contact:Leigh Ann Kingsbury910-297-3510lakingsbury@suddenlink.netTHANK YOU!