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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. James Hallenbeck, MD Medical Director, Palliative Care Services VA Palo Alto HCS. Premises. Most people interpret and construct their lives based on stories

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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

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