Ethical Considerations for Health Care Decision Making Dr. Valerye Milleson, PhD MS Clinical Ethics Fellow Alden March Bioethics Institute Albany Medical College Ethical Considerations for Health Care Decision Making 2016 Annual NYSARC, Inc. Guardianship Training Symposium, June 21-22, 2016 Decision Making Capacity 1
Challenging Cases in the Hospital Setting Dr. Valerye Milleson, PhD MS Clinical Ethics Fellow Alden March Bioethics Institute Albany Medical College Disclosures O No financial conflicts of interest O Cases are hypothetical Jordan O Medical Issues: O 30 years old O Condition with significant neurological symptoms, including seizures, progressive nerve damage, and severe mental disability O Brought to hospital for altered mental status, likely aspiration pneumonia O History of chronic aspiration and chronic pneumonia, worsening in past year O Came to hospital with a MOLST documenting DNR/DNI status O Preferences: O Has never had capacity to make medical decisions O Actively involved, loving, wellintended parents O Prior to hospitalization Jordan s parents discussed future medical planning with Jordan s primary care physician and jointly determined that DNR/DNI was in Jordan s best interests 2
Jordan s Best Interests O Qualityof LifeConsiderations: O Part of a close-knit family, wellloved and well cared for O Underlying medical condition that is progressive, terminal O Parents believe that Jordan s progression during the past year indicate that they are nearing the end of Jordan s natural life O Parents wish to avoid any measures that would likely lead to discomfort or suffering for Jordan, including artificial nutrition or hydration O Decision: O After a series of conversations with the attending physician and Jordan s primary care physician, and in consideration of Jordan s disease progression and the likely benefits-toburdens ratio of providing medical interventions like artificial nutrition and hydration, Jordan s family and the physicians agree that it is in Jordan s best interests to forego these measures and instead go home on hospice A New Problem O New ContextualFeatures: O During Jordan s hospitalization, a social worker discovers that the MOLST does not have the legally required checklistapproving DNR/DNI status O In completing a new MOLST for Jordan, the hospital team contacted the local DDSO office for advice and was informed that they needed to place a feeding tube for nutrition and hydration on a trial basis O Until the feeding tube could be ruled out as an effective treatment option, Jordan was to remain FULL CODE O Temporary Resolution: O Parents agree to the placement of a feeding tube on a trial basis, citing that at least this way Jordan can be given medicine easily O Jordan appears markedly uncomfortable with the PEG tube, showing signs of pain and pulling at the tube O Jordan s aspirations continue, and worsen Questions to Consider O What treatment plan is in Jordan s best interests in this case? O Who is in the best place to make end of life decisions for Jordan? O At what point do we consider a medical intervention futile? Does an intervention need to be trialed and ruled out in order to be considered futile? O What steps could be taken to avoid situations like Jordan s in the future? 3
The Conclusion O As Jordan continued to decline, DNR/DNI was ultimately approved O The parents request to have the feeding tube removed was approved, and comfort care was initiated O Jordan died in the hospital a few days later, surrounded by family Thoughts? Jamie O Medical Issues: O 77 years old O History of congestive heart failure, recurrent UTIs, diabetes, Alzheimer s dementia, and cognitive impairment O Admitted to hospital for fever work-up, found UTI O Had large right MCA stroke while in the hospital O Only treatment available would be a decompressive craniectomy, which the neurosurgeon is recommending against O Preferences: O Thought to never have had capacity to make medical decisions O No advance directive or known treatment preferences O No known living family members O Lives at state-supported group home 4
Jamie s Options O Qualityof LifeConsiderations: O Minimally verbal at baseline, but ambulatory, oriented, and interactive with staff at group home O Decompressive craniectomy is a risky surgery, and Jamie is not an ideal surgical candidate O Surgical intervention is thought highly unlikely to allow Jamie to return to previous baseline O Given Jamie s age and overall medical state, the surgeon would strongly recommend against a craniectomy O Contextual Features : O BecauseJamie has no family or friends to act as surrogate, major medical decisionsneed to be requested by NYS Surrogate DecisionMaking Committee and approved by NYS MHLS O The stroke occurred in the early hours Saturday morning O The SDMC takes time to set up, and requests for meetingscan only occurduring weekday business hours O If a decompressive craniectomy were to be undertaken, it would need to be performed within the next 24 hours What Should the Doctor(s) Do? Questions to Consider O What treatment is medically appropriate? O What treatment is in Jamie s best interests? O How should decisions be made for individuals like Jamie, when there is limited time and where there are no emergency mechanisms in place? O What could we do to avoid situations like this in the future? 5
Other Questions? Pitfalls to Avoid Thanks! Dr. Valerye Milleson, PhD MS Clinical Ethics Fellow Alden March Bioethics Institute Albany Medical College millesv@mail.amc.edu valeryemilleson@gmail.com 6