Partnership for Patients Summit: Session 4: Engaging in a Complete End of Life Conversation #cinderblocks #HCKC

Partnership with Patients Summitt

Session 4 Dying At Peace, Dying In Peace: Engaging in a Complete End of Life Conversation
2:00-2:45

Ann Becker-Schutte, PhD is a licensed counseling psychologist practicing in the midtown area of Kansas City, MO. Her goal in therapy is to create a safe, supportive environment for her clients.

She believes that therapy provides several key benefits. The first is the opportunity to explore challenging life issues with a caring, neutral listener–someone whose only agenda is your overall health. Another benefit is the opportunity to explore difficult experiences in a safe setting. Therapy can become a “box” to hold issues that are too painful to explore in other settings. Finally, therapy provides the benefit of an objective outside perspective, which can bring new insight about life’s challenges.

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Ann’s practice specialties include the intersection of physical & emotional health, grief & loss, and infertility.  She firmly believe that our emotional and physical health are strongly related.  There is great research supporting this belief.  So one of her primary goals in her practice is to create a space for those who are coping with serious or chronic health issues to receive support and gain understanding of how their mind and body affect one another.

Bart Windrum served as his parents’ medical proxy throughout their end-of-life hospitalizations during January 2004 when his mother, after sudden respiratory failure, spent almost three weeks intubated in an ICU, and April-May 2005 when his father self-admitted for pacemaker eligibility testing, medically crashed, and succumbed to nosocomial urinary tract MRSA after it migrated to his bloodstream. The number, frequency, and range of systemic problems Bart’s patient-family experienced served as his impetus to examine why his parents’ demises were far from peaceful for all involved despite advance planning, open conversation, and family cohesion.

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Bart describes his 2008 book, Notes from the Waiting Room: Managing a Loved One’s (End of Life) Hospitalization, as a lay person’s root cause analysis of systemic shock and harm (and he notes that patient-families are part of the system). In it he offers guidance for how to advocate when hospitalized and how, from a practical standpoint, to increase our chances of experiencing a peaceful demise—something that most of us say we want and few achieve.

Today Bart focuses primarily on assessing impediments to dying in peace with the goal of increasing the likelihood of overcoming them. His experiences and observations since 04/05 have led Bart to adopt a contrarian’s assessment of the emerging national end of life conversation. Bart’s orientation is that we’re all best served by wide-ranging, candid discussion; apportionment of responsibility; and citizen-centric dying.

**** Please remember these are my PERSONAL notes from this session and done during the session so excuse the typos and remember these may be my thoughts and impressions!  AND This is a PANEL with some Power Houses so it will be organized by How and when they speak…

  • Ann Becker-Schutte: Part I: Framing the Conversation 
    • Her story: when she was 28 she almost died from pre-eclampsia and her unborn son did – people who are grieving should have some “protection” from making serious decisions during that late time – people making decisions when there is no advance directive and no will, etc. Family has to “choose” to “let” that family member die – such an impossible choice – Her Jacket is called “Grief” – #EOLchat is a health care chat that happens every Tuesday night at 8pm CST about this topic 
    • Why aren’t we talking about End of Life?
      • Emotional reasons including fear / pain / grief / discomfort / family history / no space 
      • getting lost in the “language”… and the hospital-speak – DNR / Advance directive
    • Why should we talk?
      • No guarantees – life ends… we don’t know when / where / how – we need to have those conversations – What do we Mean?
      • values – talk about finances 
      • family – who is making decisions 
      • protective – this is what MY ideal end of life looks like – start early / talk often / make this part of a regular conversation 
      • better care – we may stay “do everything” but WHAT does that mean? 
      • focus on now 
      • creates hope
    • Tools for talking
      • Many resources (handout) / designate time / talk often / reflect early
  • Bart Windrum – To Die IN Peace 
    • The Sonnets to Orpheus: Rainer Maria Rilke: Sonnet II: XIII
      • “Be ahead of all parting…
      • be the crystal cup that shattered even as it rang.” 
    • We all want to die in Peace.. and we want to die at “home – 90% of us say that we want a peaceful demise but only 15% actually make it
    • Bo
      ok: Notes from the Waiting Room: Managing a Loved One’s End-of-Life Hospitalization – Choosing End-of-Life Care without Hospitalization
    • Quick Tour:
      • Impediments (red flags)
        • recognize the boundary between living with versus dying from what ails us
        • realize that death is “timed” in hospitals and how to advocate there 
        • understand and reframe engagement in heroic activity
        • ponder a few things about who owns our dying
      • Aha’s
        • The best way to manage a terminal hospitalization is not to have one
        • if death is timed in hospitals and we don’t want to die there then we have to “time” our own death
      • We over resolve and under execute
      • The Crux: as the chances of recovery because less than there is more risk of death
      • The Slippery slope: Life support is a continuum with reflective transitions: life-saving / standard operating procedure / treatment
      • Advance Directive(s) – shouldn’t they “save” us?
        • can be to peaceful dying as starry skies were to the Titanic 
    • What can we do?
      • Back to the Sonnets – …give it your perfect ascent… add yourself (didn’t catch it – sorry!)
      • How we die graphic and should include “medical error” in those graphics (medical errors may or may not contribute to or result in death) 
      • Heroicism Over Time – need to recognize the use of heroic efforts 
      • Off-the-shelf dying: “death has become a commodity” 
      • Palliative and Hospice Care 
    • be ahead of all parting
      • Final Exam: Living with versus dying from
      • Death has been brought into life / death is timed in hospitals
      • If terminal, self-directed dying is not suicide
      • reframe: recognize prior heroic action
    • New Terms of Engagement
      • should there be more than one descriptor for “dying”
  • Questions
    • What is “terminal” – there is a medical definition for “terminality” – this is also a personal choice
    • what about mental health in general besides cognitive decline – there may be suicidal ideation?  Can there be a time when that is considered “terminal”? 

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