Planning for Incapacity & the End of Life Julie Gilgoff, JD (jgilgoff@gmail.com Kandice Jung, JD (kandicejung@yahoo.com) Catheryn Koss, JD, PhD (koss@csus.edu)

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

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

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

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

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

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)

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

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

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

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

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?

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

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

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

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

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

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?

Questions? Reflections?