Long Term Perspective for the Intellectually Disabled Christian W. Dahl, M.D. Senior Medical Director Developmental Disabilities Administration dahlcw@dshs.wa.gov 360-829-1508

Goal today Simulation Exercise What is unique about our clients and how they access palliative care Understand the role of Guardians and Family members who help make decisions Understand the history of our policies and how they affected past practices and decision making What has changed and we hope continues to improve

Small group exercise Three participants Client 50+y.o. neurodevelopmental disorder. You understand conversations, but have difficulty with expression. Your dysphagia progressed, resulting in a gastric feeding tube, but it has not stopped aspiration events. Three hospitalizations in last 12 months, one time on ventilator for a prolonged period. You are hypoxic and in respiratory distress

In the Emergency Department Medical Caregiver is not familiar with client. Reviewed chart/hospitalizations. Expect a need for intubation very soon Legal Guardian has known client 15 years. You are on the phone. Very good relationship, attend all conferences and visits frequently No one has had the “Conversation” with you

Please take 3 minutes to decide what to do. Review groups comments

Our clients are your patients As a comprehensive service provider, we use the term client. Not Medical Model Occasionally confusing when interacting with others Progress in client rights, choices and self determination Denial of the inevitable vs active treatment There can be resources available by interdisciplinary providers Those in facilities represent the highest need Community may have limited resources

Individuals Very Diverse, difficult to simply classify More interesting than a day in the average clinic Not as dramatic as a county hospital ED. Many are competent Choose to live their life the way they want Sometimes working within the system Know their rights

Privacy for the Competent Client Some have a plan, but didn’t want to share it staff Will talk when good and ready Not ready at all Hasn’t been asked by the care givers and case mangers Resources is often introduced at the Hospital or medical provider level When asked, has already thought about it Details what they want Past experiences with family and friends Needed to be asked

The Conversation <https://theconversationproject.org/> The Conversation Project Pediatrics Similar to the Guardian role Dementia/Alzheimers Individual Each team member can start Conference call to work on a ID version

Who decides if not competent? Often the Guardian Family: Parent if still alive, next is usually siblings Complicated if no Guardian Default Is Full Resuscitation Last resort Secretary DSHS, more for ensuring care.

Most common cause of Mortality Not the immediate effects of developmental disorder It’s the complications or secondary illnesses Less common to die from accidents, heart disease or cancer Pneumonia related to chronic aspiration due to dysphagia 25 X higher Next most common is complications of bowel issues Slow, often predictable progression. The sudden M.I, CVA is less common

Where did DDA policy come from? 1990 “Hospice” policy Allowed to have DNR Required three Physicians Advanced stage of incurable disease Administrative review Not allowed to discuss it unless absolutely at the end. 1987 Grant decision Supreme Court of WA Incompetent person had same rights as Competent to refuse treatment.

Natural Death Act RCW 70.122.010 was amended in 1992 to accept Guardian decisions without limitations. 1993 DDD Policy 9.04 still not allow straight forward decision. Retained three physicians, Administrative review and incorrect use of the term Hospice. Next 23 years little improved in facilities to address issues. DDD Policy 9.01 allowed for Advanced Directives, but we couldn’t really use them unless the client was competent AND demanded it.

Planning Last minute Unable to return home Coordination of care issues Prolonged, repeat hospitalizations

DDA starts recognizing Physician’s Orders for Life Sustaining Treatment DDD Policy 2009 Operations Reporting Requirement Policy 6.09 for financial issues included administrative review of Community clients interested in a POLST Not recognize the Medical Order was already in effect Belief in a veto option 2016 version policy was just about end of life decisions. WSHPCO complaints and discussion ensued 2018 removed the administrative review and now consistent with Community expectations Training field staff completed and continues with providers

Residential Habilitation Centers DDD Policy is often converted to local Procedures Superintendent has veto power Limited discussion, contradictory rules 2015-2016 committee to separate issues and prior beliefs to adopt the POLST Still two providers, one outside of facility Still had administrative review with implied veto 2018 version adopted the Community client standard, and dropped the outdated requirements Still a 3-4 hour training session to reduce/eliminate resistance

Today We can allow clients and guardians to decide their care and end of life care Still modeled with the Incurable irreversible illness It is about the individual’s care plan We require the conversation if there is any significant illness or decline We encourage conversation, but not require a decision Starting the conversation early is still a concern Documentation of all decisions is essential

Hopes and future Conversation continues Caregiver beliefs and attitudes recognize the available choices Stay within their home vs required training programs Move to the facility appropriate for care plan