The document discusses the ethics of prognostication in medicine. It begins with an introduction to palliative and curative models of medicine. It then reviews key ethical principles of autonomy, beneficence, non-maleficence, justice and veracity as they relate to prognosis. Finally, it discusses Downing's 10 steps to better prognosis, focusing on using tools and judgment to foresee a patient's situation, while centering the discussion on a patient's goals and framing prognosis in a way that respects ethical values.

1. ETHICS OF
PROGNOSTICATION
Michael Aref, MD, PhD, MBE, FACP, FHM, FAAHPM, HMDC
Assistant Medical Director of Palliative Medicine and Co-Chair Carle Ethics Committee

2. INTRODUCTION
Disclosures, Objectives and a Foreward

3. DISCLOSURES
I HAVE NO RELEVANT FINANCIAL DISCLOSURES. OPINIONS SHARED IN THIS PRESENTATION ARE MY
OWN AND NOT NECESSARILY SHARED BY MY
COLLEAGUES OR ORGANIZATION.

4. OBJECTIVES
• Describe palliative and curative models of medicine.
• Review ethical principles of autonomy, beneficence, non-maleficence, justice, and
veracity.
• Review theory of diagnosis, prognosis, and treatment.
• Discuss Downing’s 10 Steps to Better Prognosis as they relate to ethical principles
• Describe the VitalTalk approach to communicating prognosis in context of ethical
principles

5. THEORY VERSUS APPLICATION

6. PALLIATIVE AND CURATIVE
Models of Medicine

7. LIFE
Courtesy Dr. C. Wagner

8. MODELS OF MEDICINE
Curative
Disease
Patient
Palliative
Patient
Disease
Theor Med Bioeth. 2001 Jun;22(3):177-92. doi: 10.1023/a:1011466711211. PMID: 11499494.

9. CURATIVE MODEL
Disease
Patient
• Care of patients is to cure or fix disease.
• Diagnose the problem and treat it.
• Representative language
• “Save lives, stamp out disease.”
• ”The cirrhotic in 6258”
• “You want to admit the MI or the PE?”

10. PALLIATIVE MODEL
Patient
Disease
• Care of patients is to alleviate suffering
• Prognosticate the problem and
determine the path forward consistent
with the patient’s goals of care.
• Representative language
• “Hope for the best, plan for the rest.”
• ”What are the patient’s goals and
values?”
• “Goals before holes!”

11. GOALS VS HOLES
The curative and palliative models can be at
odds with one another.

12. MODELS OF MEDICINE
Curative
Acute Mortality
Acute Morbidity
Longterm Mortality
Longterm Morbidity
Palliative
BLS and ACLS
Treating anaphylaxis
Cancer screening
Cholesterol management
Physiologic
Safety
Belonging
Esteem
Self-Actualization
Pain
Housing
Worries about surviving partner
Loss of role or identity
Existential crisis
Curr Opin Support Palliat Care. 2008; 2(2):110-3
Maslow AH, A Theory of Human Motivation, 1943

13. MODELS OF
MEDICINE
Patient
Palliative
Disease
Disease
Curative
Patient
Curative and palliative intent are not at
exclusion of one another and care of the
patient may include parts or all of each
model.

14. ETHICAL PRINCIPLES
In Context of Prognosis

15. REVIEW OF ETHICAL PRINCIPLES
• The right to protection from
harm
• The right to the same treatment
regardless of non-disease related
factors such as age, sex, gender,
sexual orientation, race, religion,
finances, or other demographic
differences
• The right to only be offered
options that are helpful
• The right of a patient to freely
choose among offered clinical
options
Autonomy Beneficence
Non-
maleficence
Justice
Veracity
• The right to honesty and being told the
truth

16. AUTONOMY
• Majority of patients with serious illness would appreciate prognostication to plan
and anticipate their needs, however a majority of physicians are hesitant to do so
due to:
• lack of training in prognostication and communication regarding prognosis
• fear of causing hopelessness
• poor estimate models
Christakis NA, Lamont EB. Extent and determinants of error in physicians’ prognoses in terminally ill patients: Prospective cohort study. West J Med. 2000;172(5):310-313. doi:10.1136/ewjm.172.5.310
Ranjan P, Kumari A, Chakrawarty A. How can doctors improve their communication skills? J Clin Diagnostic Res. 2015;9(3):1-4. doi:10.7860/JCDR/2015/12072.5712

17. BENEFICENCE
• Appraisal, disclosure and interpretation
of data are part of prognostication.
• It is important to use evidenced-based
interventions that have supportive
evidence including positive endpoints
of conveying information, risk analysis,
and comprehension.
• Numerical representations presenting
statistics in terms of natural frequencies
rather than percentages.
• Avoiding linguistic representation of
risks without supporting numerical
representations.
• Graphical representations of
information.
Martin EJ, Widera E. Prognostication in Serious Illness. Med Clin NA. 2020;104(3):391-403. doi:10.1016/j.mcna.2019.12.002
Lenz M, Buhse S, Kasper J, Kupfer R, Richter T, Mühlhauser I. Decision aids for patients. Dtsch Arztebl Int. 2012;109(22-23):401-408. doi:10.3238/arztebl.2012.0401
Yen PH, Leasure AR. Use and Effectiveness of the Teach-Back Method in Patient Education and Health Outcomes. Fed Pract. 2019;36(6):284-289.
http://www.ncbi.nlm.nih.gov/pubmed/31258322%0Ahttp://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=PMC6590951.

18. NON-MALEFICENCE
• Research has demonstrated that physicians often feel that it is the responsibility of
patients to learn about their prognosis rather than information that is provided by
the physician.
• Two in every three physicians decline providing estimates of prognosis, particularly
regarding life-expectancy.
• As a group, oncologists often use negative and aggressive metaphors to describe
the discussion of prognosis such as
• “hitting [the patient] over the head”
• “dropping a bomb”
• “ambushing [the patient]”
• Differing estimates by different providers cause distress.
• Clinicians are not trained and therefor do not think prognostically.
Gordon EJ, Daugherty CK, Gordon E.J, Daugherty C.K. “Hitting you over the head”: Oncologists’ disclosure of prognosis to advanced cancer patients. Bioethics. 2003;17(2):142-168. doi:10.1111/1467-8519.00330
Martin EJ, Widera E. Prognostication in Serious Illness. Med Clin NA. 2020;104(3):391-403. doi:10.1016/j.mcna.2019.12.002
Brennan F, Stewart C, Burgess H, et al. Time to improve informed consent for dialysis: An international perspective. Clin J Am Soc Nephrol. 2017;12(6):1001-1009. doi:10.2215/CJN.09740916
Theor Med Bioeth. 2001 Jun;22(3):177-92. doi: 10.1023/a:1011466711211. PMID: 11499494.

19. JUSTICE
• Models for determining prognosis are based on cohorts created by both explicit and
implicit biases that may or may not adequately represent individual patients.
• All of us have implicit bias of which we are of varying degrees unaware, and this
implicit bias effects how we diagnose, prognosticate, and treat patients.

20. VERACITY
• Being honest, factual and truthful about prognostication is inherently challenging
due to the lack of control we have regarding the future.
• It is also difficult to differentiate what occurs to the patient because of our
interventions or despite them:
• Patients suddenly “do better” when we focus only on comfort interventions.
• 80% of presenting complaints in the primary care out-patient setting resolve
spontaneously

21. DIAGNOSIS, PROGNOSIS, AND TREATMENT
Past, Present and Future

22. DIAGNOSIS, PROGNOSIS, AND
TREATMENT
Complaint/
Symptom/
Positive Test
Diagnosis
Prognosis
Discuss Goals
Palliative ± Curative Treatment
J Grad Med Educ. 2015 Dec; 7(4): 523–527.

23. DIAGNOSIS
• Await clinical presentation or positive
screen.
• Perform history and physical examination.
• If available, review standard preliminary
diagnostics, e.g. complete blood count,
comprehensive blood count, PT, PTT, EKG,
CXR.
• Use a framework to generate differential
diagnoses, e.g. anatomical, physiological,
pretest probability.
• Obtain confirmatory diagnostics.
• If unable to diagnose or diagnosis
requires specific knowledge, skills, or
procedure, obtain specialist opinion.

24. TREATMENT
Based on diagnosis, use evidence-based guidelines to provide
treatment.
If treatment involves medications, procedures or surgery not
performed by treating provider, consult appropriate specialist to
provide treatment.

25. PROGNOSIS: FORESEE
Concept 10 Steps to Better Prognostication Action Steps
Foresee
Science
Disease 1. Start with an Anchor Point Obtain details of known survival stats by stage of disease, SEER
web, etc; speak with expert about 1-, 5-, 10-Yr survival stats
Function 2. Assess changes in Performance Status
(amount; rate of change)
Use a functional status tool which is part of prognosis (eg. PPS,
KPS, ECOG) to assess illness trajectory
Tests 3. Known physical signs and laboratory
markers related to prognosis
• Eg. WBC, %lymphocytes, albumin
• Eg. Delirium, dyspnea, anorexia, weight loss, dysphagia
Tools 4. Utilize palliative or end- stage prognostic
tools
PPS, PaP, PPI, SHFM, CCORT, CHESS, nomograms, etc
Skill
Judgment 5. Clinician Prediction of Survival. Would I be
Surprised?
• Use your clinical judgment to formulate
• See if it fits with the above prognostic factors & adjust
accordingly
• Remember common optimistic bias & adjust further
M. Downing, Victoria Hospice Society, 1952 Bay St, Victoria, BC, Canada, V8R 1J8
victoriahospice.org/wp-content/uploads/2019/07/10_steps_to_better_prognostication_table_copyright_sample_0.pdf

26. 1. DISEASE
In selecting the anchor point the ethical
principles of:
• Beneficence
• Is this the best test for my patient?
• Non-maleficence
• What are the harms in using this test for my
patient?
• Veracity
• Does this test give the most honest
assessment of my patient?
• Justice
• Is this test biased for or against my patient?
eprognosis.ucsf.edu/bubbleview.php

27. 2. FUNCTION
• PPS = Palliative Performance Scale
• KPS = Karnofsky Performance Scale
• PaP = Palliative Prognostic Score
• PPI = Palliative Performance Index
• ECOG = Eastern Cooperative Oncology Group performance status
• SEER = Surveillance Epidemiology & End Results
• SHFM = Seattle Heart Failure Model
• CCORT = Canadian Cardiovascular Outcomes Research Team
• CHESS = Changes in end-stage symptoms and signs

28. 3. TESTS
• Hyperrubinemia, or the state of too many
red lab values, is a poor prognostic
indicator.
• Albumin < 2.5 g/dL associated with most
chronic illness, including dysphagia, is
criteria for hospice eligibility
• Bilirubin > 2 mg/dL typically precludes
chemotherapy.
• Delirium carries an increased mortality.
• Unintentional weight loss > 10% in 6
months associated with a chronic illness,
including dysphagia, is criteria for hospice
eligibility.
• Based on internal data, ~50% of heart
failure patients who undergo readmission
are deceased within 3 months.
• Based on internal data, approximately 2/3
of patients with dysphagia and comorbid
advanced or end-stage illness die within 1
month of admission.

29. 4. TOOLS
PPS Level Ambulation Activity & Evidence of Disease Self-Care Intake Conscious Level Life Expectancy
100% Full
Normal activity & work No
evidence of disease
Full Normal Full
90% Full
Normal activity & work Some
evidence of disease
Full Normal Full
80% Full Normal activity with Effort Some
evidence of disease
Full Normal or reduced Full
70% Reduced
Unable Normal Job/Work
Significant disease
Full Normal or reduced Full Months
60% Reduced
Unable hobby/house work
Significant disease
Occasional assistance
necessary
Normal or reduced Full or Confusion
Weeks-
Months
50% Mainly Sit/Lie
Unable to do any work Extensive
disease
Considerable
assistance required
Normal or reduced Full or Confusion Weeks
40% Mainly in Bed
Unable to do most activity
Extensive disease
Mainly assistance Normal or reduced
Full or Drowsy +/-
Confusion
Weeks
30%
Totally Bed
Bound
Unable to do any activity
Extensive disease
Total Care Normal or reduced
Full or Drowsy +/-
Confusion
Days-Weeks
20%
Totally Bed
Bound
Unable to do any activity
Extensive disease
Total Care Minimal to sips
Full or Drowsy +/-
Confusion
Days
10%
Totally Bed
Bound
Unable to do any activity
Extensive disease
Total Care Mouth care only
Drowsy or Coma +/-
Confusion
Days
0% Death - - -
Victoria Hospice Society

30. “
”
WOULD YOU BE SURPRISED IF THIS PATIENT WERE
ALIVE IN 1 YEAR?
So don’t react…proact
5. Judgement

31. PROGNOSIS: FORETELL
Concept 10 Steps to Better Prognostication Action Steps
Foretell
Art
Center 6. What is important to my patient? To the
family?
• Who/what do they want to know/not know?
• Is it ‘how long’ or ‘what will happen’?
• What are their goals; what is hoped for
Frame it 7. Use probabilistic planning and discussion Ball-park range; average survival; most will live...; outliers;
talk in time-blocks; etc
Cautions 8. Share limitations of your prognosis
• No one knows for sure; exceptions do occur
• Changes can occur at any time
Changes 9. Review and Reassess Periodically
• “What is” will change
• Especially if ‘triggers’ arise
Follow-up 10 . Stay Connected
• Discuss advance care planning as things may change
further at anytime
• Initiate effective symptom control
• Involve inter-professional & home team; furthermore,
patients want their physician to remain involved, even
close to death, and will feel abandoned otherwise
M. Downing, Victoria Hospice Society, 1952 Bay St, Victoria, BC, Canada, V8R 1J8
victoriahospice.org/wp-content/uploads/2019/07/10_steps_to_better_prognostication_table_copyright_sample_0.pdf

32. ADAPT FOR PROGNOSIS
• Ask what the patient knows and what they want to know.
• Discover what information about the future would be useful for the patient.
• Anticipate ambivalence.
• Provide information in the form the patient wants.
• Track emotion.
www.vitaltalk.org/guides/discussing-prognosis/

33. 6. CENTER
• Ask what the patient knows and what they want to know.
• Autonomy
• “What have other doctors told you about what your prognosis, or the future?”
• “How much have you been thinking about the future?”
• Discover what information about the future would be useful for the patient.
• Autonomy
• “For some people prognosis is numbers or statistics about how long they will live. For other
people, prognosis is about living to a particular date. What would be more helpful for you?”
www.vitaltalk.org/guides/discussing-prognosis/

34. 7. FRAME IT
• Anticipate ambivalence.
• Veracity
• “Talking about the future can be a little scary.”
• Beneficence and non-maleficence
• “If you’re not sure, maybe you could tell me how you see the pros and cons of discussing this.”
• Justice
• “From what I know of you, talking about this information might affect decisions you are thinking
about.”
• Provide information in the form the patient wants.
• Veracity and Justice
• “The worst case scenario is [25th percentile], and the best case scenario is [75th percentile].”
• “If I had 100 people with a similar situation, by [median survival], 50 would have died of cancer and
50 would still be alive with cancer.”
www.vitaltalk.org/guides/discussing-prognosis/

35. 8. CAUTIONS
• Track emotion.
• Justice
• “I can see this is not what you were hoping for.”
• “I wish I had better news.”
• “I can only imagine how this information feels to you. I appreciate that you want to know
what to expect.”
• Share limitations of your prognostication
• Non-maleficence and veracity
• “My crystal ball is cracked and dirty, no one knows the future, so these are just my best
guesses based on what we know right now. I would rather be proven wrong about estimating
less time than give you false hope about more time.”
www.vitaltalk.org/guides/discussing-prognosis/

36. 9. CHANGES
• Review and reassess periodically
• In-patient this may be daily, out-patient this may be at each clinic visit
• Hospice has two 90-day then recurring 60-day certification periods
• Beneficence, Non-Maleficence, and Justice
• What continues to support the prognosis?
• What new information has been obtained that changes prognosis?
• Are we still providing the patient with the best care?

37. 10. FOLLOW-UP
• Discuss advance care planning as things may change further at anytime
• Initiate effective symptom control
• Involve inter-professional and home team; furthermore, patients want their
physician to remain involved, even close to death, and will feel abandoned
otherwise
• Beneficence and Non-Maleficence

38. THANK YOU
Questions? Comments? Discussion?