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

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.

3. Disclosures

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
– 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. DEFINTION

8. Bio Medical
PDP
Psycho Social

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
• “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. Subjective vs Objective
Subjective vs Objective
I’m right! You’re wrong! La La La! I can’t 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 multiple
factors
• 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

21. Memory is Faulty
• How long is a minute?
– If you are 20?
– If you are 80?

22. 20 yo
80 yo
20 yo
80 yo

23. http://www.ted.com/talks/deb_roy_the_birth_of_a_word.html

24. Falling Experiment

25. 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

26. Prognosis Independent
• Stochastic
• Labeling
• Acceptance
• “Time bind” hypothesis
• Altered time passage

28. Prognosis Independent
• Stochastic
• Labeling
• Acceptance
• “Time bind” hypothesis
• Altered time passage

29. 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

30. Prognosis Independent
• Stochastic
• Labeling
• Acceptance
• “Time bind” hypothesis
• Altered time passage

31. Acceptance
• “I’m done”
• “I’m dying – nothing left to do, just wait”
• Psycho-social-spiritual interventions
– Making meaning
– Dignity therapy

32. Prognosis Independent
• Stochastic
• Labeling
• Acceptance
• “Time bind” hypothesis
• Altered time passage

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

34. Prognosis Independent
• Stochastic
• Labeling
• Acceptance
• “Time bind” hypothesis
• Altered time passage

35. Objective Prolonged Dying
• Stochastic
• Medical interventions
• Failed external outcome
– Organ transplant
– Special event
• Statistical deviation

36. Organ Transplant
• Guidelines suggest 30-90 mins post extubation
until time for cardiac death

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
– Organ transplant
– Special event
• Statistical deviation

40. Statistical Approach

42. 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

43. Prolonged Dying Time Graph
p1 p2
X X
tc td
pdmin
pdmax

44. Prolonged Dying Time Graph
p1 p2
X X
tc td
pdmin = td-p2
pdmin
pdmax =td-p1 pdmax

45. Prolonged Dying Time Graph
p1 p2
X X
tc td
pdmin = td-p2
pdmin = 0
pdmax =td-p1 pdmax

47. Calculating Suffering

48. 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?

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.

51. 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