1. Planning for Incapacity & the End of Life
Julie Gilgoff, JD
Kandice Jung, JD
Catheryn Koss, JD, PhD

2. Overview What is capacity?
Common legal documents used to plan for diminished capacity and the end-of-life
What happens when no/poor planning has been done?
Minimizing risks of abuse or unforeseen consequences
How to work with surrogate decision makers

3. What Is Capacity? Having mental ability to make specific decision
Ability to receive and evaluate information
Ability to understand risks, benefits, and consequences
Ability to make and communicate decision
Capacity may vary over time and circumstances
Capacity requirements vary by type of decision
Capacity is NOT a diagnosis

4. Common Legal Planning Documents
Durable Power of Attorney (for health and/or finance)
Advance Directive/Living Will
Do-Not-Resuscitate (DNR)
Last Will and Testament
Revocable Living Trust
Transfer-On-Death Deed and Payable-On-Death Designation

5. Durable Power of Attorney
Elder (principal) appoints an agent to make financial decisions and/or healthcare decisions
Principal must appoint agent during time of capacity
Can go into effect immediately or at loss of capacity
Document can be revised or revoked at any time

6. Advance Directive/Living Will
Written statement of wishes for medical treatment, if the person is unable to communicate in future
Protects right to refuse medical treatments or request treatment (e.g., surgeries, artificial nutrition/hydration)
Appoints person to carry out wishes on patient’s behalf

7. Do-Not Resuscitate (DNR)
Withholds CPR and Advanced Cardiac Life Support (ACLS) if heart stops or stops breathing
Also called “No Code” or “Allow Natural Death”
The DNR request can be made by the patient or the attorney in fact (or sometimes physician)

8. Last Will and Testament
“Testator” expresses how real and personal property should be distributed after death (to “Beneficiaries”)
Names “Executor” to handle estate
Property still goes through probate
Does not take effect until after death

9. Revocable Living Trust
Way to avoid probate
Assets titled in trust
Controlled by a trustee, who manages the assets
A revocable living trust covers three phases: the grantor’s lifetime during capacity, incapacity, and after death

10. Transfer-On-Death & Payable-On-Death
Way to avoid probate
Transfer-On-Death (TOD) deed allows owner of real property to pass on property after death
Payable-On-Death bank accounts allow money to be passed to beneficiary
Both revocable until death, beneficiaries have no interest while owner still alive

11. Can be used for health care planning
Document
Can be used for health care planning
Can be used for financial planning
Can be used in decisionmaking before death
Can be used in decisionmaking after death
Durable Power of Attorney
Yes No
Advance Directive/ Living Will
DNR
Will
Revocable Trust
TOD and POD

12. Example Case
June is a 50-year-old woman who has always had a vibrant and physically-active life.  One day, June experiences a seizure that leads to a terminal cancer diagnosis.  Although her prognosis is six months, June does not discuss end-of- life options with her family or physician. One month after her diagnosis, June becomes fully incapacitated. Her family is left to determine treatment options - most of which have a low likelihood of working and must be balanced with the diminished quality of life June will likely experience.
(1) When should planning have been raised and by whom? 
(2) Why might June and her family have not discussed end of life options/planning?
(3) To whom should providers look regarding June’s treatment?

13. Failure to Plan—The Consequences
Guardianship
Lack of autonomy at end-of-life
Probate
Potential Guardianship
Expensive and intrusive procedure
Court involvement in appointment and oversight
Inability of those who are most knowledgeable about the person to make decisions
Lack of autonomy at end-of-life
Default rules to provide all care may apply, regardless of diagnosis or prognosis
Probate
Estate may be distributed according to intestate laws and subject to probate court

14. Poor Planning—The Joint Tenancy Trap
Why do people create joint tenancies?
Why is creating a joint tenancy a mistake?
What are some better options?
Why do people do it?
Main reason: to avoid probate
Also, assumption that joint tenancy will be an “easy way” for children to manage one’s affairs in case of incapacitation
Why is it a mistake?
Joint tenancies are usually revocable so you give ownership away. To make changes, joint tenancies require the signature of the other joint tenant to make any changes.
Joint tenants may not always get along, which causes problems because decisions must be made jointly.
Joint tenancy does not give future interests to your children or other recipients, but rather gives present interests—so your assets become subject to your children/recipients’ creditors, divorce proceedings, and other future problems, all while you are alive.
Joint tenancies may lead to the loss of favorable property tax treatment or become subject to a gift tax liability.
Medicaid disqualification
Better options often available
Transfer on death title
Durable power of attorney
Living will
Revocable trust

15. Potential Risks—How to Minimize
Carefully choose surrogate decision-makers
Build in safeguards and checks
Limit powers to what is necessary
Discuss wishes and preferences
Carefully choose surrogate decision-makers
Reliability
Similar viewpoints or values
Build in safeguards/checks
Ensure those closest to you are aware of your true wishes and concerns
Limit powers to what is necessary
Do not rush into the joint tenancy trap
Discuss wishes and preferences
The earlier, the better— particularly before a diagnosis or prognosis that will make discussion of such sensitive topics more challenging

16. How To Work with Surrogates
Ask to see authorizing document
Read document to determine:
When it takes effect
Who is authorizes
What it authorizes
If principal still has capacity, that person’s wishes trump instructions of surrogate

17. Handling Abuse by Surrogates
If guardian, court overseeing guardianship has authority to prevent guardian’s action or remove guardian
Adult Protective Services handles cases of abuse, neglect, or financial exploitation
Call police or 911 in emergency
Long-term care ombudsman may assist if person is in long- term care facility

18. Example Case
Joseph is a 90-year-old man who’s wife of 60 years recently died. Joseph moved into an assisted living facility and immediately started dating a female resident, Louise. Louise and Joseph plan to move in together as soon as a large one- bedroom unit is available. Joseph’s daughter – who had durable power of attorney for her father – is upset about this new relationship and has instructed facility staff to prevent Louise and Joseph from moving in together.
(1) Who should facility staff listen to?  
(2) What other information would you need to know?

19. Questions?
Reflections?