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![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.](https://image.slidesharecdn.com/21-220516041002-251c0213/75/Ethics-of-Prognostication-18-2048.jpg)
![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/](https://image.slidesharecdn.com/21-220516041002-251c0213/75/Ethics-of-Prognostication-34-2048.jpg)
Uploaded byMike Aref
Ethics of Prognostication
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.
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Ethics of Prognostication
- 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 anda Foreward
- 3. DISCLOSURES I HAVE NORELEVANT FINANCIAL DISCLOSURES. OPINIONS SHARED IN THIS PRESENTATION ARE MY OWN AND NOT NECESSARILY SHARED BY MY COLLEAGUES OR ORGANIZATION.
- 4. OBJECTIVES • Describe palliativeand 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.
- 6. PALLIATIVE AND CURATIVE Modelsof Medicine
- 7. LIFE Courtesy Dr. C.Wagner
- 8. MODELS OF MEDICINE Curative Disease Patient Palliative Patient Disease TheorMed Bioeth. 2001 Jun;22(3):177-92. doi: 10.1023/a:1011466711211. PMID: 11499494.
- 9. CURATIVE MODEL Disease Patient • Careof 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 • Careof 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 Thecurative and palliative models can be at odds with one another.
- 12. MODELS OF MEDICINE Curative AcuteMortality 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 andpalliative 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 Contextof Prognosis
- 15. REVIEW OF ETHICALPRINCIPLES • 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 ofpatients 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, disclosureand 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 hasdemonstrated 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 fordetermining 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, ANDTREATMENT Past, Present and Future
- 22. DIAGNOSIS, PROGNOSIS, AND TREATMENT Complaint/ Symptom/ PositiveTest Diagnosis Prognosis Discuss Goals Palliative ± Curative Treatment J Grad Med Educ. 2015 Dec; 7(4): 523–527.
- 23. DIAGNOSIS • Await clinicalpresentation 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 10Steps 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 selectingthe 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 LevelAmbulation 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 BESURPRISED IF THIS PATIENT WERE ALIVE IN 1 YEAR? So don’t react…proact 5. Judgement
- 31. PROGNOSIS: FORETELL Concept 10Steps 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 • Askwhat 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 • Trackemotion. • 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 • Reviewand 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 • Discussadvance 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?
Editor's Notes
- #6 Mike Tyson: ”Everyone has a plan until they get punched in the face.”
- #18 SPIKES takes a good deal of training to be done well. Difficult to replicate this with technology ‘Teach back” requires high level executive functioning assess effectiveness, also difficult to be done by technology In addition, poor health literacy, innumeracy15, and early cognitive impairment in dementia16 may all be patient limiting factors in understanding and comprehension that technology cannot solve.
- #19 Given the underlying rules for informed consent it seems likely that however well-intentioned a new tool would be to assist in informed consent there is an increased risk of further removing physicians from their ethical responsibility of prognostication and communication. That stated there also remains the opportunity with both video and virtual reality aids to empower patients to ask more questions, pulling clinicians from their place of discomfort and promoting ethically responsible, patient-focused, informed consent.
- #26 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.