1. ProlongedDying Defining a newPhase:bio-medical-psycho-social construct Christian Sinclair, MD, FAAHPMMarch 2012National Hospice Medical Director AAHPM/HPNA Annual Assembly Gentiva Health Services

2. Handouts and Slides Your handouts are not the slides These slides will be available online viaSlideshare.net/ctsinclairThis slidedeck and handouts are licensed under aCreative Commons Attribution-ShareAlike 3.0 Unported License. 3. Disclosures 4. Objectives Describe the challenge of prolonged dyingfrom the perspective of patient and family Understand the difference between objectiveand subjective measurements of time andprognosis Describe how the perspective of time andprognosis influences suffering at the end oflife 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. Definitions Syndrome Several clinically recognizable signs, symptoms orphenomena 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. DEFINTION 8. Bio Medical PDPPsycho Social 9. When the dying process of a terminal patient with minimal functionexceeds the expected or true prognosisto the degree whichthe patient, family or health care teambegins to question the expected time frame.Physical symptoms and physical sufferingdo not need to be present for PDP,yet suffering related to time and expectations may be experienced by all involved. 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. What PDP Is Not Were all dying Denial/minimizing coping mechanisms Lack of consensus of impending death Not from first declaration ofterminality/diagnosis Not a side effect of medically hastened deaths Depression 12. Subjective vs ObjectiveSubjective vs ObjectiveIm right! Youre wrong! La La La! I cant hear you! 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. Subjective PDP Prognosis Dependent Errant prediction Communicated Formulated Perceived Multiple predictor (wide range) Altered time passage 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. Subjective PDP Prognosis Dependent Errant prediction Communicated Formulated Perceived Multiple predictor (wide range) Altered time passage 17. Multiple Predictor Multiple HC professionals Offering multiple opinions Over multiple times Evaluator (patient or family) Chooses/selectively hears based on multiplefactors Leads to wide range Improves w/ communication/family meetings 18. Subjective PDP Prognosis Dependent Errant prediction Communicated Formulated Perceived Multiple predictor (wide range) Altered time passage 19. Memory is Faulty How long is a minute? If you are 20? If you are 80? 20. 20 yo80 yo20 yo80 yo 21. http://www.ted.com/talks/deb_roy_the_birth_of_a_word.html 22. Falling Experiment 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. Prognosis Independent Stochastic Labeling Acceptance Time bind hypothesis Altered time passage 25. Prognosis Independent Stochastic Labeling Acceptance Time bind hypothesis Altered time passage 26. Labeling Im/Youre/He/She is dying On hospice On morphine Stopping medicines/vent/feeding Amenable to education and support Similar but different from perceived errantprediction/common wisdom 27. Prognosis Independent Stochastic Labeling Acceptance Time bind hypothesis Altered time passage 28. Acceptance Im done Im dying nothing left to do, just wait Psycho-social-spiritual interventions Making meaning Dignity therapy 29. Prognosis Independent Stochastic Labeling Acceptance Time bind hypothesis Altered time passage 30. Time Bind Hypothesis Fast pace of our lives Makes us less patient with indefinite orextended periods of timeThe Time Bind, Arlie Russell Hochschild 1997 31. Prognosis Independent Stochastic Labeling Acceptance Time bind hypothesis Altered time passage 32. Objective Prolonged Dying Stochastic Medical interventions Failed external outcome Organ transplant Special event Statistical deviation 33. Organ Transplant Guidelines suggest 30-90 mins post extubationuntil time for cardiac death 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. Objective Prolonged Dying Stochastic Medical interventions Failed external outcome Organ transplant Special event Statistical deviation 36. Statistical Approach 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. Prolonged Dying Time Graph p1 p2XXtc td pdmin pdmax 39. Prolonged Dying Time Graphp1 p2 XXtctdpdmin = td-p2pdminpdmax =td-p1 pdmax 40. Prolonged Dying Time Graphp1p2 X Xtc tdpdmin = td-p2 pdmin = 0pdmax =td-p1 pdmax 41. Calculating Suffering 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. When the dying process of a terminal patient with minimal functionexceeds the expected or true prognosisto the degree whichthe patient, family or health care teambegins to question the expected time frame.Physical symptoms and physical sufferingdo not need to be present for PDP,yet suffering related to time and expectations may be experienced by all involved. 44. Photo Credit Dying takes an awfully long time By MelletingMixPix Muybridges The Horse in Motion - WikimediaCommonsStandard deviation diagram Wikimedia Commons Image from Living wills: a solution to the prolongedact of dying? Houston CS CMAJ TED Talk Deb Roy 2011 Personal photo, Christian Sinclair