1. Long Term Perspective for the Intellectually Disabled
Christian W. Dahl, M.D.
Senior Medical Director
Developmental Disabilities Administration

2. 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

3. 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

4. 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

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

6. 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

7. 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

8. 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

9. The Conversation
< 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

10. 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.

11. 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

12. 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.

13. Natural Death Act
RCW 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.

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

15. 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

16. Residential Habilitation Centers
DDD Policy is often converted to local Procedures
Superintendent has veto power
Limited discussion, contradictory rules
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

17. 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

18. 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