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Prolonged dying phase aahpm 2012
1. Prolonged
Dying
Defining a new
Phase: bio-medical-psycho-social
construct
Christian Sinclair, MD, FAAHPM March 2012
National 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 via
Slideshare.net/ctsinclair
This slidedeck and handouts are
licensed under a
Creative Commons Attribution-ShareAlike 3.0 Unported License.
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. 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
â Several clinically recognizable signs, symptoms or
phenomena occurring together
⢠Construct
â An ideal object that may or may not exist physically
⢠Phase
â Distinguishable part of sequence occurring over time
⢠Time
â Not anything that you think it is
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 team
begins 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. 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
⢠âWeâre all dyingâŚâ
â 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
17. Multiple Predictor
⢠Multiple HC professionals
⢠Offering multiple opinions
⢠Over multiple times
⢠Evaluator (patient or family)
â Chooses/selectively hears based on multiple
factors
⢠Leads to wide range
⢠Improves w/ communication/family meetings
29. Labeling
⢠âIâm/Youâre/He/She is dyingâ
⢠âOn hospiceâ
⢠âOn morphineâ
⢠âStopping medicines/vent/feedingâ
⢠Amenable to education and support
⢠Similar but different from perceived errant
prediction/common wisdom
31. Acceptance
⢠âIâm doneâ
⢠âIâm dying â nothing left to do, just waitâ
⢠Psycho-social-spiritual interventions
â Making meaning
â Dignity therapy
33. Time Bind Hypothesis
⢠Fast pace of our lives
⢠Makes us less patient with indefinite or
extended periods of time
The Time Bind, Arlie Russell Hochschild 1997
37. Univ Wisconsin Evaluation Tool
Lewis J, Peltier J, Nelson H, Snyder W, Schneider K, Steinberger D, Anderson M, Krichevsky A, Anderson J, Ellefson J, D'Alessandro
A. Development of the University of Wisconsin Donation After Cardiac Death Evaluation Tool. Prog Transplant. 2003
Dec;13(4):265-73. PubMed PMID: 14765718.
38. Objective Prolonged Dying
⢠Stochastic
⢠Medical interventions
⢠Failed external outcome
â Organ transplant
â Special event
⢠Statistical deviation
48. Where I Need Your Help
⢠Is prolonged the right word?
â Used by staff, family, patients
â Speaks to agency
â Gradual, lengthy, long
⢠Phase versus Syndrome?
⢠If there is PDP is there Abrupt Dying Phase?
49. 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 team
begins 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.
50.
51. Photo Credit
⢠Dying takes an awfully long time By MelletingMixPix
⢠Muybridgeâs The Horse in Motion - Wikimedia
Commons
Standard deviation diagram â 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
Hinweis der Redaktion
Time is relativeMany cues to time besides clock
Camera unlocks a secret â it stops time â 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 PathÂ