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Ellen Cameron, Lower Cape Fear Hospice

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

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Ellen Cameron, Lower Cape Fear Hospice

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  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

  3. The Answer is:Sex and End of Life!

  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

  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…

  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

  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

  12. ~ Capacity ~ Is the person capable?

  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 Kingsbury; InLeadS Consulting and Training 2006

  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 Kingsbury; InLeadS Consulting and Training 2006

  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)

  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

  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

  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

  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

  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

  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

  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. Living wills and Advance Directives

  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

  26. Advance Directive • Includes the person’s living will • Most importantly, it identifies the substitute decision maker(s)….the “durable healthcare power of attorney”

  27. Critical Points People must have the capacity to name a Power of Attorney; if the person already has a guardian he/she cannot name a power of attorney Therefore, the person cannot have an Advance Directive But we should still know what is important to that person and what their personal goals are for their healthcare and their life

  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 hugeissues 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

  32. 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

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

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