Prolonged  Dying                                         Defining a new  Phase:                            bio-medical-psy...
Handouts and Slides• Your handouts are not the slides• These slides will be available online via  Slideshare.net/ctsinclai...
Disclosures
Objectives• Describe the challenge of prolonged dying  from the perspective of patient and family• Understand the differen...
What We Will Not Cover•   What is death?•   When exactly are you dead?•   Medically hastened death•   How to formulate a p...
Definitions• Syndrome  – Several clinically recognizable signs, symptoms or    phenomena occurring together• Construct  – ...
DEFINTION
Bio           Medical         PDPPsycho         Social
When the dying process of a terminal patient with minimal function  exceeds the expected or true prognosis            to t...
Aspects of PDP•   Patient is terminally ill•   Care setting and tenor reflects terminal status•   PPS ≤ 30%•   May be iden...
What PDP Is Not• “We’re all dying…”  – Denial/minimizing coping mechanisms• Lack of consensus of impending death• Not from...
Subjective vs ObjectiveSubjective vs ObjectiveI’m right! You’re wrong! La La La! I can’t hear you!
Subjective Prolonged Dying• Prognosis dependent   – Errant prediction        • Communicated        • Formulated        • P...
Subjective PDP – Prognosis Dependent – Errant prediction    • Communicated    • Formulated    • Perceived – Multiple predi...
Errant Prediction• Communicated  – “Afraid to tell the truth” phenomenon• Formulated  – Poor models, poor data, poor exper...
Subjective PDP – Prognosis Dependent – Errant prediction    • Communicated    • Formulated    • Perceived – Multiple predi...
Multiple Predictor•   Multiple HC professionals•   Offering multiple opinions•   Over multiple times•   Evaluator (patient...
Subjective PDP – Prognosis Dependent – Errant prediction    • Communicated    • Formulated    • Perceived – Multiple predi...
Memory is Faulty• How long is a minute?  – If you are 20?  – If you are 80?
20 yo        80 yo20 yo80 yo
http://www.ted.com/talks/deb_roy_the_birth_of_a_word.html
Falling Experiment
Subjective Prolonged Dying• Prognosis dependent   – Errant prediction        • Communicated        • Formulated        • P...
Prognosis Independent•   Stochastic•   Labeling•   Acceptance•   “Time bind” hypothesis•   Altered time passage
Prognosis Independent•   Stochastic•   Labeling•   Acceptance•   “Time bind” hypothesis•   Altered time passage
Labeling•   “I’m/You’re/He/She is dying”•   “On hospice”•   “On morphine”•   “Stopping medicines/vent/feeding”•   Amenable...
Prognosis Independent•   Stochastic•   Labeling•   Acceptance•   “Time bind” hypothesis•   Altered time passage
Acceptance• “I’m done”• “I’m dying – nothing left to do, just wait”• Psycho-social-spiritual interventions  – Making meani...
Prognosis Independent•   Stochastic•   Labeling•   Acceptance•   “Time bind” hypothesis•   Altered time passage
Time Bind Hypothesis• Fast pace of our lives• Makes us less patient with indefinite or  extended periods of timeThe Time B...
Prognosis Independent•   Stochastic•   Labeling•   Acceptance•   “Time bind” hypothesis•   Altered time passage
Objective Prolonged Dying• Stochastic• Medical interventions• Failed external outcome  – Organ transplant  – Special event...
Organ Transplant• Guidelines suggest 30-90 mins post extubation  until time for cardiac death
Univ Wisconsin Evaluation ToolLewis J, Peltier J, Nelson H, Snyder W, Schneider K, Steinberger D, Anderson M, Krichevsky A...
Objective Prolonged Dying• Stochastic• Medical interventions• Failed external outcome  – Organ transplant  – Special event...
Statistical Approach
Subjective Prolonged Dying• Prognosis dependent   – Errant prediction        • Communicated        • Formulated        • P...
Prolonged Dying Time Graph     p1         p2X                            Xtc                           td                 ...
Prolonged Dying Time Graph                p1       p2   X                                  X    tc                        ...
Prolonged Dying Time Graph                p1                p2   X                         X    tc                       t...
Calculating Suffering
Where I Need Your Help• Is prolonged the right word?  – Used by staff, family, patients  – Speaks to agency  – Gradual, le...
When the dying process of a terminal patient with minimal function  exceeds the expected or true prognosis            to t...
Photo Credit• Dying takes an awfully long time By MelletingMixPix• Muybridge’s The Horse in Motion - Wikimedia  Commons  S...
Prolonged dying phase aahpm 2012
Prolonged dying phase aahpm 2012
Prolonged dying phase aahpm 2012
Prolonged dying phase aahpm 2012
Prolonged dying phase aahpm 2012
Prolonged dying phase aahpm 2012
Prolonged dying phase aahpm 2012
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Prolonged dying phase aahpm 2012

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Presented at 2012 AAHPM meeting; Not a substitute for talking to your doctor. Not medical advice.

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  • Time is relativeMany cues to time besides clock
  • Camera unlocks a secret – it stops time – water pouring splashing EdwaRDmUYBRIDGEleland Stanfordhttp://upload.wikimedia.org/wikipedia/commons/4/4a/Muybridge_race_horse_gallop.jpg
  • 3 years 90,000 hours of video, 140k hours of audio and 200 terabytes
  • Time bind is a concept introduced by sociologist Arlie Russell Hochschild in 1997 with the publication of her The Time Bind: When Work Becomes Home and Home Becomes Work. This concept refers to the blurring distinction between work and home social environments.Hochschild found in her research that although most working parents, particularly all mothers, said "family comes first," few of them considered adjusting their long hours, even when their workplaces offered flextime, paternity leave, telework or other "family friendly" policies. Her conclusion is that the roles of home and work had reversed: work has become more attractive, offering a sense of belonging, while home had grown more stressful, becoming a dreaded place with too many demands.
  • The Four Noble Truths 1. Life is suffering 2. Suffering is caused by unreasonable expectations 3. Suffering ceases with the ceasing of unreasonable expectations 4. The way to reasonable expectations is the Eightfold Middle Path 
  • Prolonged dying phase aahpm 2012

    1. 1. Prolonged Dying Defining a new Phase: bio-medical-psycho-social construct Christian Sinclair, MD, FAAHPM March 2012National Hospice Medical Director AAHPM/HPNA Annual Assembly Gentiva Health Services
    2. 2. Handouts and Slides• Your handouts are not the slides• These slides will be available online via Slideshare.net/ctsinclair This slidedeck and handouts are licensed under aCreative Commons Attribution-ShareAlike 3.0 Unported License.
    3. 3. Disclosures
    4. 4. Objectives• Describe the challenge of prolonged dying from the perspective of patient and family• Understand the difference between objective and subjective measurements of time and prognosis• Describe how the perspective of time and prognosis influences suffering at the end of life
    5. 5. What We Will Not Cover• What is death?• When exactly are you dead?• Medically hastened death• How to formulate a prognosis• How to communicate a prognosis*
    6. 6. Definitions• Syndrome – Several clinically recognizable signs, symptoms or phenomena occurring together• Construct – An ideal object that may or may not exist physically• Phase – Distinguishable part of sequence occurring over time• Time – Not anything that you think it is
    7. 7. DEFINTION
    8. 8. Bio Medical PDPPsycho Social
    9. 9. When the dying process of a terminal patient with minimal function exceeds the expected or true prognosis to the degree which the patient, family or health care teambegins to question the expected time frame. Physical symptoms and physical suffering do not need to be present for PDP,yet suffering related to time and expectations may be experienced by all involved.
    10. 10. Aspects of PDP• Patient is terminally ill• Care setting and tenor reflects terminal status• PPS ≤ 30%• May be identified by patient, family or staff• Usually acceptance; even welcoming of death• Suffering dependent on perception of time/ meaning as opposed to physical symptoms
    11. 11. What PDP Is Not• “We’re all dying…” – Denial/minimizing coping mechanisms• Lack of consensus of impending death• Not from first declaration of terminality/diagnosis• Not a side effect of medically hastened deaths• Depression
    12. 12. Subjective vs ObjectiveSubjective vs ObjectiveI’m right! You’re wrong! La La La! I can’t hear you!
    13. 13. Subjective Prolonged Dying• Prognosis dependent – Errant prediction • Communicated • Formulated • Perceived – Multiple predictor (wide range) – Altered time passage• Prognosis independent – Stochastic – Labeling – Acceptance – “Time bind” hypothesis – Altered time passage
    14. 14. Subjective PDP – Prognosis Dependent – Errant prediction • Communicated • Formulated • Perceived – Multiple predictor (wide range) – Altered time passage
    15. 15. Errant Prediction• Communicated – “Afraid to tell the truth” phenomenon• Formulated – Poor models, poor data, poor experience• Perceived – Common wisdom • “Without food and water…” – “Seems really close” – Prior experience
    16. 16. Subjective PDP – Prognosis Dependent – Errant prediction • Communicated • Formulated • Perceived – Multiple predictor (wide range) – Altered time passage
    17. 17. Multiple Predictor• Multiple HC professionals• Offering multiple opinions• Over multiple times• Evaluator (patient or family) – Chooses/selectively hears based on multiple factors• Leads to wide range• Improves w/ communication/family meetings
    18. 18. Subjective PDP – Prognosis Dependent – Errant prediction • Communicated • Formulated • Perceived – Multiple predictor (wide range) – Altered time passage
    19. 19. Memory is Faulty• How long is a minute? – If you are 20? – If you are 80?
    20. 20. 20 yo 80 yo20 yo80 yo
    21. 21. http://www.ted.com/talks/deb_roy_the_birth_of_a_word.html
    22. 22. Falling Experiment
    23. 23. Subjective Prolonged Dying• Prognosis dependent – Errant prediction • Communicated • Formulated • Perceived – Multiple predictor (wide range) – Altered time passage• Prognosis independent – Stochastic – Labeling – Acceptance – “Time bind” hypothesis – Altered time passage
    24. 24. Prognosis Independent• Stochastic• Labeling• Acceptance• “Time bind” hypothesis• Altered time passage
    25. 25. Prognosis Independent• Stochastic• Labeling• Acceptance• “Time bind” hypothesis• Altered time passage
    26. 26. Labeling• “I’m/You’re/He/She is dying”• “On hospice”• “On morphine”• “Stopping medicines/vent/feeding”• Amenable to education and support• Similar but different from perceived errant prediction/common wisdom
    27. 27. Prognosis Independent• Stochastic• Labeling• Acceptance• “Time bind” hypothesis• Altered time passage
    28. 28. Acceptance• “I’m done”• “I’m dying – nothing left to do, just wait”• Psycho-social-spiritual interventions – Making meaning – Dignity therapy
    29. 29. Prognosis Independent• Stochastic• Labeling• Acceptance• “Time bind” hypothesis• Altered time passage
    30. 30. Time Bind Hypothesis• Fast pace of our lives• Makes us less patient with indefinite or extended periods of timeThe Time Bind, Arlie Russell Hochschild 1997
    31. 31. Prognosis Independent• Stochastic• Labeling• Acceptance• “Time bind” hypothesis• Altered time passage
    32. 32. Objective Prolonged Dying• Stochastic• Medical interventions• Failed external outcome – Organ transplant – Special event• Statistical deviation
    33. 33. Organ Transplant• Guidelines suggest 30-90 mins post extubation until time for cardiac death
    34. 34. Univ Wisconsin Evaluation ToolLewis J, Peltier J, Nelson H, Snyder W, Schneider K, Steinberger D, Anderson M, Krichevsky A, Anderson J, Ellefson J, DAlessandroA. Development of the University of Wisconsin Donation After Cardiac Death Evaluation Tool. Prog Transplant. 2003Dec;13(4):265-73. PubMed PMID: 14765718.
    35. 35. Objective Prolonged Dying• Stochastic• Medical interventions• Failed external outcome – Organ transplant – Special event• Statistical deviation
    36. 36. Statistical Approach
    37. 37. Subjective Prolonged Dying• Prognosis dependent – Errant prediction • Communicated • Formulated • Perceived – Multiple predictor (wide range) – Altered time passage• Prognosis independent – Stochastic – Labeling – Acceptance – “Time bind” hypothesis – Altered time passage
    38. 38. Prolonged Dying Time Graph p1 p2X Xtc td pdmin pdmax
    39. 39. Prolonged Dying Time Graph p1 p2 X X tc tdpdmin = td-p2 pdminpdmax =td-p1 pdmax
    40. 40. Prolonged Dying Time Graph p1 p2 X X tc tdpdmin = td-p2 pdmin = 0pdmax =td-p1 pdmax
    41. 41. Calculating Suffering
    42. 42. Where I Need Your Help• Is prolonged the right word? – Used by staff, family, patients – Speaks to agency – Gradual, lengthy, long• Phase versus Syndrome?• If there is PDP is there Abrupt Dying Phase?
    43. 43. When the dying process of a terminal patient with minimal function exceeds the expected or true prognosis to the degree which the patient, family or health care teambegins to question the expected time frame. Physical symptoms and physical suffering do not need to be present for PDP,yet suffering related to time and expectations may be experienced by all involved.
    44. 44. Photo Credit• Dying takes an awfully long time By MelletingMixPix• Muybridge’s The Horse in Motion - Wikimedia Commons Standard deviation diagram – Wikimedia Commons• Image from Living wills: a solution to the prolonged act of dying? Houston CS CMAJ• TED Talk Deb Roy 2011• Personal photo, Christian Sinclair
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