2/13/2015 No Disclosures Neuropalliative Case Laura Koehn Assistant Professor Neurology and Palliative Care Laura.Koehn@ucsfmedctr.org The Case Case continued � Mrs. Smith is a 82 year-old woman brought in by her � Liz has received phone calls from bill collectors about daughter, Liz, for memory loss. various overdue bills, including some for charities overseas, which seem to have limited credibility. � Her husband died 5 years ago so she moved to an � Mrs. Smith then moves in with her daughter who also assisted living facility closer to her daughter. has a full time job and appears distressed. � One year ago, Liz notices some forgetfulness � After completing a thorough cognitive evaluation, � Three months ago, Liz receives phone calls about her depression screen, medical workup including imaging, mother wandering the grounds and occasionally you diagnose Mrs. Smith with Alzheimer’s Dementia. agitated 1
2/13/2015 Liz believes in miracles and asks How do you respond to Liz’s you to heal her mother. statement? A. I am sorry, but dementia is incurable. B. I do not believe in miracles. 52% C. I wish we could cure your mother’s 42% dementia. D. We can both hope scientists will discover a cure to help your mother soon. 5% 1% I am sorry, but dementia i... I do not believe in miracles. I wish we could cure yo.. We can both hope scientis.. Hoping for a miracle Why is this relevant? � Survey of 1006 adult Americans and 774 trauma � Belief in miracles or divine intervention affects medical professionals regarding preferences of care when life- decision making (association with CPR) threatening or fatal injury occurs. � Many patients want doctors to ask about their spiritual � 61% believed a person in a persistent vegetative state beliefs (PVS) could be saved by a miracle � 20% of trauma professionals believed � Greater attention to spiritual beliefs can foster a mutual � 57% believed divine intervention from God could save a plan of care for and with patients person even if the physician told them “futility had been reached.” 2
2/13/2015 VALUE Hoping for Hope � Value and appreciate what surrogates communicate � Expressing hope for a miracle is not an expression of an expectation. � Acknowledge their emotions with reflective summary � statements Challenge with saying sorry: � Confusion with sympathy or pity � Listen carefully � Shortcutting a deeper understanding � Understand who the patient is as a person by asking � Confusion with apologies open ended questions � Changes the subject from patient and family to physician � Elicit questions I WISH… Mrs. Smith � You see Mrs. Smith and Liz every 6 months until 6 years have passed � Her MOCA has declined and is now 6/30 � She develops difficulty with swallowing and is admitted to the ICU for aspiration pneumonia, requiring ventilator support � You are asked to attend a family meeting 3
2/13/2015 What communication technique has been Case continued shown to reduce a choice of CPR? � During the meeting, the medical teams share their A. Eliciting goals and values then making a concerns Mrs. Smith may not survive this hospital stay. recommendation based on those values 48% B. Making a unilateral decision if CPR would � She does not have an advance directive eliciting her be medically futile preferences for end of life care. 31% C. Attending to emotions during a family � They make a recommendation regarding her code conference 12% status. D. Using language such as “allow natural 9% death” rather than “do not resuscitate” . . . . . . . . . . “ s . d . e s s i u c s a e n a l h d o v c l t i u d a o r s n m a e e t g a e s a l i l o u a n t g o u g g n a n a g i l n g d g n n t i n i e i c i k s a t l i t U E M A CPR The framing � Patients overestimate its effectiveness � Framing it as the patient’s decision not surrogates � CPR discussions are often brief, do not address risks, � No impact on CPR choice benefits, and outcomes � Framing the alternative as � Doctors rarely address patients’ prognosis, elicit goals Allow Natural Death and values, or provide a recommendation � Reduced choice of CPR � Patients often report that doctors do not understand � Framing the decision as the their wishes norm � Reduced choice of CPR 4
2/13/2015 You ask Liz what she understood Mrs. Mrs. Smith Smith’s likelihood of survival to be. What did she most likely say? � You spend time with Liz after the family meeting A. 5% � Liz is distraught that the doctors are “giving up” on her mother. B. 10% 86% � When you ask about Liz’s understanding of how the C. 50% meeting went, she states “My mother is a fighter and D. 30% will pull through this.” � During the meeting, the physicians told Liz that her mother had a 5% likelihood of surviving. 7% 5% 1% % % % % 5 0 0 0 1 5 3 Key Findings: Qualitative Interview � Surrogates Reasons for Optimistic Estimates � Need to express optimism “Even with a 5% chance of survival there is still hope. I hold onto hope.” � Belief that patients’ fortitude will lead to better-than-predicted outcomes “…a person’s will to live and ability to survive stressful situations can impact whether they will survive or not.” Zier, et al 2007 5
2/13/2015 Key Findings: Qualitative Interview Mrs. Smith � Surrogates Reasons for Optimistic Estimates � A week passes and Mrs. Smith gradually improves but has developed a stage 2 decubitus ulcer during the � Disbelief in physicians’ ability to hospitalization prognosticate � She is extubated safely and transferred to the acute “…I don’t think doctors can really know the % floor for further care chance of survival...” � She is seen by speech therapy who note dysphagia of � Interpretation of prognosis as a “gist” liquids and solids estimate rather than a precise estimate � They recommend Mrs. Smith remain NPO “I tend not to trust the number as much as the feeling the doctor is conveying.” Liz asks you to order a PEG tube. What is Key Findings: Survival your response? � Median survival following A. Yes, artificial nutrition will help Mrs. Smith’s new development of eating ulcer heal problems for those with PEG B. Yes, otherwise she will starve to death 86% was 177 days C. No, I cannot recommend a futile procedure � No significant difference was D. You withhold judgment until having a further found for those without PEG conversation explaining the risks of the after adjusting for relevant procedure and unclear benefits covariates 9% 4% 1% . . . . . . . . . l . . . i t d u w s n t l l n n i e o w m e i m m t e i g r h o t s d u c u n e e j s r d l i t a w o l i o c r n h i e f h n h t i a t t r o c w i Teno et al, Oct 2012 JAGS a , I , s , u s o e e o Y Y N Y 6
2/13/2015 Key Findings: Ulcers Mrs. Smith � Ulcer Development: � Over the next days, Mrs. Smith becomes more alert � Those with a PEG significantly more likely to develop an ulcer � Adjusted odds ratio = 2.27 (95% CI, 1.95-2.65) � She takes in very small amounts of food by mouth � While Liz wants to continue thinking about artificial � Ulcer Improvement: nutrition and hydration, she is agreeable to a time trial � Those with a PEG significantly less likely to show improvement at home without these interventions. in an existing ulcer � Adjusted odds ratio = 0.70 (95% CI, 0.55-0.89) � Now it is time for discharge. � Each finding confirmed by multiple sensitivity analyses Teno et al 2012, Annals of IM What is your recommendation for care after Mrs. Smith Mrs. Smith is discharged? � You sit down with Liz and A. Short stay in a rehabilitation facility receiving clarify her hopes for Mrs. intensive PT/ST/OT Smith’s care. B. Recommendation for a skilled nursing facility 68% � She wants to bring her to bridge her to home mother home but continues C. Uncertain at this time. You sit down with Mrs. to have a goal of extending her mother’s life as long as Smith and Liz to further clarify their goals. possible by non-invasive D. Home with hospice 22% means. 9% 2% e . . . . . . c . k . i . s o p a s t a Y i o l r . h b i o e m h a f h t n i i e o t w s r i i a t h e a m n d t t i n a o e H y a m n t i s m a t t r r o e o c c h e n R S U 7
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