1. Advanced Care Planning End of Life Decision Making
Nansi Greger-Holt, MPH, MSN
Family/ Geriatric NP
UNC Department of Neurology
Libby Hart, RN
Nurse Educator, UNC Hospice
11/7/18

2. Has changed the way we live Has changed the way we are sick
Medical Progress
Has changed the way we live
Has changed the way we are sick
Has changed the way we die
Being Mortal- by Atul Gawande

3. Medicolegal Ethical Issues
Karen Ann Quinlan ( )
Ethics committees in hospitals, NH, hospices
Legal underpinnings of advance directive documents
Nancy Cruzan ( )
Led states to formalize laws governing:
Withhold or withdrawing life-sustaining treatments
Living wills
Healthcare proxies
Patient’s Self Determination Act (1990)
Requires agencies receiving federal funds inform patients of right to complete an Advance Directive
Terri Schiavo ( )
Karen Ann Quinlan (March 29, 1954 – June 11, 1985) was an American woman who became an important figure in the history of the right to die controversy in the United States.
When she was 21, 4/15/75, Quinlan became unconscious after she consumed diazepam, dextropropoxyphene, and alcohol while on a crash diet and lapsed into a coma, followed by a persistent vegetative state.
After doctors refused the request of her parents, Joseph and Julia Quinlan, to disconnect Karen's respirator, which they believed constituted extraordinary means of prolonging her life, her parents filed a suit in September 1975, to disconnect Karen from her ventilator.
Went through the court system, taken off the vent March 1976.
Feeding tube- lived until 1985
Quinlan's case continues to raise important questions in moral theology, bioethics, euthanasia, legal guardianship and civil rights. Her case has affected the practice of medicine and law around the world. A significant outcome of her case was the development of formal ethics committees in hospitals, nursing homes and hospices.
Nancy Cruzan- age 25, mva- june 1983,
Resuscitated- persistent vegetative state.
Feeding tube.
Nancy Cruzan is responsible for a Supreme Court decision that helped to empower people—competent and incompetent—with choices at the end of life. "I think this is quite an accomplishment for a 25 year old kid," her father said, "and I'm damn proud of her.“
Schiavo case involved 14 appeals and numerous motions, petitions, and hearings in the Florida courts
5 suits in federal district court; 
extensive political intervention at the levels of the Florida state legislature,
then-governor Jeb Bush,
the U.S. Congress,
President George W. Bush;
Supreme Court of the United States.[5]

4. Video about Nancy Cruzan

5. Dying in the U.S. 85% of people will die from the following diseases:
20 % Cancer
25% Organ Failure
40% neurodegenerative diseases/ Frailty
Average of 2-4 years of disability before death

6. Goals will change with health/illness What’s important?
Goals of Care
Goals will change with health/illness
What’s important?
How do you want to spend your time?
What is scary to you?
Comfort care

7. Advanced Directives

8. Myths about Advanced Directives
Only old people need Advanced Directives
My doctor and my family already know
what I want
Advanced care planning costs a lot of
Money
Advanced directives mean I will get less
or worse treatment

9. Myths about Advanced Directives
If I have financial power of attorney, I
don’t need a health care power
If I name someone as my health care
agent I will lose control of my care.
A living will stating I don’t want to
receive life prolonging measures means I
have a DNR

10. Legal Vs. Medical Documents

11. DNR and MOST - (Medical Orders)
DNR – Do not resuscitate
MOST- Medical Orders for Scope of Treatment –
Recommended for patients with serious illness or frailty, for whom a health care professional would not be surprised if they died within one year, should have a POLST (in NC a MOST) Form

12. DNR- Do Not Resuscitate MOST- Medical Orders for Scope of Treatment

13. Advanced Directives (Legal documents)
Health Care Power of Attorney
Health care proxy
Health care agent
Living Will
State specific but usually honored in other
states.
NC must be notarized
Organ donation checkbox

14. Health Care Power of Attorney
Speaks on your behalf
when you are not able to tell doctors what kind of medical care you want
Knows you well; knows what you want
Available to represent you medically
Willing to honor your wishes
Can, but does not need to be, related to you
They should know and agree to this role; 18+ years old
Not your paid health care provider
Effective when you lack capacity to make decisions
Can revoke, change
If you don’t have a

15. If I Don’t Have A HCPOA IN THIS ORDER: Legal guardian
Attorney in fact under a general POA if it includes health decisions
Husband or wife
Majority of your parents and adult children
Majority of adult siblings
An individual who has a relationship with you who is acting in good faith to relay
your wishes
Your doctor in agreement with another doctor

16. Condition is incurable and will result in death soon
“Living Will” = End of Life Wishes Advanced Directive for a Natural Death
Your desire not to receive life prolonging measures in any or all of these situations:
Condition is incurable and will result in death soon
Unconscious and your doctors are confident you will not regain consciousness
Advanced dementia or substantial irreversible loss of mental function

17. Tools for Advanced Care planning
The Conversation Project
5 Wishes
State specific Advanced Directive Forms

18. Advanced Directives : NC Medical Board
Health Care Power of Attorney Advanced Directive for a Natural Death (“Living Will”) An Advanced Directive for North Carolina – A Practical Form for All Adults

19. Hospice Referrals
Prognosis of 6 months or less if the disease follows it normal course of decline
Referral to hospice to discuss
Informational visit
Assessment visit

20. REFERENCES
Advance Care Planning | National Institute on Aging. (n.d.). Retrieved from AMA Policy on End-of-Life Care. (n.d.). Retrieved from Appelbaum PS, Grisso T. Assessing patients’ capacities to consent to treatment. N Engl J Med 1988; 319: The Conversation Project - Have You Had The Conversation? (n.d.). Retrieved from The Conversation Project - Introduction. (n.d.). Retrieved from Legal and Financial Planning for People with Alzheimer's Disease Fact Sheet | National Institute on Aging. (n.d.). Retrieved from

21. REFERENCES ( continued)
National POLST. (n.d.). Retrieved from D. Oliver (ed.), End of Life Care in Neurological Disease, 19 DOI / _2, © Springer-Verlag London 2013 Retrieved from Retrieved from Nothing found for Wp Content Uploads Editable Simplified Ad. (n.d.). Retrieved from The right to die. (n.d.). Retrieved from