CASE PRESENTATION 80 Man with respiratory failure admitted to ICU and found to have metastatic cancer… Patient deemed“un-weanable” ICU care perceived as “futile” Patient has capacity, no surrogate When asked for permission to discontinue life-support, patient asked for “everything to be done.” Ethics and Palliative Care consults were obtained

Session Goals Discuss this case relative to: General issues in physician-patient communication How to communicate regarding difficult decisions How to incorporate patient preferences into decisions Ethical issues involved Focus on the concept of medical futility

Communication Premises Most people interpret and construct their lives based on stories Problems often occur when personal storylines have been disrupted Patient/family stories conflict with medical stories Problem resolution is enhanced by effective communication and mutual construction of a new storyline Which requires patient/family and provider to be “in-synch”

ICU Clinician Story Continued care is medically futile Patient does not get how sick he is - ? “in denial” Running out of time before patient becomes confused With no surrogate decision maker, will they be forced to continue to “do everything,” even it such care is useless and harmful?

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

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

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

Space as an Aspect of Communication Culturally defined, out of general consciousness Varies with roles and relationships Formal Space Friendly Space Intimate Space For Elders distance may be appropriate in representing respect. However, to the extent personal caring and concern is being communicated may be more intimate, requiring close proximity, even intimate space. In this case relatively intimate space used – holding hand, putting on patient’s glasses etc..

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 Point out that when we instruct clinicians to sit and “listen” to some degree we may be unwittingly be slowly them down enough so they become visible. Speed in healthcare (need to move people quickly) also way out of synch with many elders ? Star Treck story . In this case had to speak slowly, wait for written, nodded responses. Inquired, “I bet this all seems like it is happening very fast to you…” Nodded emphatically yes. Young and Old out of Synch:

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 In case: Let patient know I knew about “The Silk Road” etc. “What have you been told” “ What is your body telling you” Empathetic statements, “This must have taken you by surprise. It must be very hard for you to figure out what to do given this sudden turn of events. Suggested that he probably did have time to do some things, but probably not finish the book. Suggested a “frame shift” in goals to: “If I am dying, where and how would I like to live until I die.” Response: “What about my estate” (Patient adjust goals, opportunity for us to help) Discussion of how to get his will and “say good-bye” – Intubation now re-framed as giving time to say good-bye and adjust to diagnosis.

So What Happened? How to establish synchronicity between patient and ICU staff? Shifting goals of care For Patient For Staff Bringing stories into alignment Negotiating a mutually satisfactory story ending

The Good Acronym Goals Options Opinion Document

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?” Use case to illustrate: Stakeholders here fairly clear – pt and clinicians, who were appeared ‘on the same page’ Patient understood he had cancer His ‘big picture’ goal was to finish his book, which would take a year

Options Identify relevant options and priorities Address benefits and burdens of options Do your homework Address probability of success Link options to identified goals Suggested frame shift of goals based on opinion that nobody had the power to give one year. Strengthening alliance, started with acknowledgement of the wish, “wouldn’t that be great…” Frame shift – not so much how long to live, but how and where to live for what time left Options – continue on vent indefinitely, consider new goals and use time on vent, transition to comfort care goals and ? Hospice Ward With this patient wrote, “What about my estate?” He drew a picture of a box with his will in it. Demonstrating shifting goals based on new information. Pearl: Too often clinicians get bogged down in discussions over specific options without understanding how options relate to overall goals.

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 Offered my opinion that A) he did seem to need a bit more time to let things sink in. B) He could use the time he had on the vent to ensure certain goals were met. Thus, we colluded on a new, mutually constructed story – using his time on the vent to ‘take care of business’ before he died. Note this was different than original two stories – live for a year or discontinue futile care. Two days later, asked what if… question (iterating back to options) what if you were ‘unable to meaningfully interact with your environment and doing poorly and this thought irreversible’, could we then transition to comfort care, including discontinuing the vent? Strong, affirmative node.

Document Who said what What you did/will do with this information “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 …” Documented initial discussion and follow-up with advance, advance directive. A witnessing note also included for this.

SUMMARY Good communication manifests in real relationships between real people and facilitates problem solving Establishing such relationships requires: Entrainment Trust Sharing of stories Negotiation Mutual construction of a new story