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Ethical Issues: How to Begin the Discussion with Patients and Families

Ethical Issues: How to Begin the Discussion with Patients and Families

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Ethical Issues: How to Begin the Discussion with Patients and Families

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  1. Ethical Issues: How to Begin the Discussion with Patients and Families James Hallenbeck, MD Medical Director, Palliative Care Services VA Palo Alto HCS

  2. Premises • Most people interpret and construct their lives based on stories • Ethical crises often occur when personal storylines have been disrupted • Evolving patient/family stories conflict with medical stories • Positive resolutions of ethical crises are enhanced by the mutual construction of a new storyline • Which requires patient/family and provider to be “in-synch”

  3. CASE PRESENTATION • 80 Man with respiratory failure admitted to ICU and found to have metastatic cancer…

  4. Ethical Dilemmas: Often More a Problem of Communication than Conflicting Principles • Bioethics based largely on “stories” or model cases • Bioethical “stories” very foreign to many • Good communication involves sharing of stories and gives rise to new, mutually constructed stories, resolving the dilemma

  5. The Bioethical Story… • Medical Facts – Patient “un-weanable” – likely to die in a matter of days – weeks • ICU care perceived as “futile” relative to significant life-prolongation • Clinicians not required to provide futile care • Patient has capacity, no surrogate • Patients with capacity have a right to decide goals of care, including code status • Dilemma – when is resuscitation deemed futile?

  6. The Patient’s Story … • In the process of writing a book – wants a year to finish • Was unaware that he was this ill – acute illness took him by surprise • Trying to come to grips with prognosis – all happening too fast Question:“What can we do for you?” Answer: “Give me TIME

  7. Communication – specific skills required • General • Active Listening • Verbal and Non-Verbal • Addressing emotional as well as cognitive components of communication • Recognition of barriers • Language, Hearing, Speaking Above presumes a connection between participants that may not in fact be present

  8. Entrainment as a Communication Skill Like gears must touch, but not crowd • Spacing • Gears must be synchronized • Aligned temporally • Work toward a common purpose • Shared narrative construction

  9. Space as an Aspect of Communication • Culturally defined, out of general consciousness • Varies with roles and relationships • Formal Space • Friendly Space • Intimate Space

  10. Time as an Aspect of Communication • With age time experienced more slowly • Perception of time correlates with the inverse of the square root of chronological age • Elders perceive the young to move too quickly • The young perceive elders to move too slowly Young and Old out of Synch:

  11. Working toward a Common Purpose • Demonstration of respect for the person • Inquire regarding current understanding of illness • Explanatory Model • Explaining one’s own explanatory model (and story) • Inquire regarding goals (where is story headed) • Look for opportunities to come into synch with these goals

  12. The Good Acronym • Goals • Options • Opinion • Document

  13. Goals • Identify stakeholders and their goals • Future goals based on current understanding • “What is your understanding of” • “What did your doctor tell you” • Identify ‘big picture’ goals first • “Let’s look at the big picture, what is most important to you?”

  14. Options • Identify relevant options and priorities • Address benefits and burdens of options • Do your homework • Address probability of success • Link options to identified goals Pearl: Too often clinicians get bogged down in discussions over specific options without understanding how options relate to overall goals.

  15. Opinion • In offering your opinion… • Present data using neutral language: • Crush the chest • Massage the heart • Press on the chest • Be clear what is data and what opinion • Incorporate goals, benefits/burdens and values into your opinion • Listen to other’s opinions

  16. Document • Who said what • “Patient said he didn’t want tube feeding” • What you did/will do with this information • “Will cancel PEG tube insertion” • Your assessment • “This reasonable given …”

  17. SUMMARY • Ethics work best when manifest in real relationships between real people • Establishing such relationships requires: • Entrainment • Trust • Sharing of stories • Negotiation • Mutual construction of a new story