Ethics & Alzheimer’s Disease Kenneth Morgan Sauer, MD Baptist Health System April 27, 2018

Who Is This Guy? Graduated from UAMS in 2000 Family Medicine Residency 2003 Geriatric Fellowship Donald W. Reynolds Institute on Aging 2004 Director of Supportive Care Baptist NLR

Objectives Review ethical considerations in care for Alzheimer’s disease and other dementias Identifying when ethical issues may arise Addressing ethical issues appropriately

Diagnosis of Dementia A 72 year old lady receives a standard memory screen during an annual wellness exam. Abnormalities are detected that warrant further testing. She has brother who died from Alzheimer’s disease. “If this is happening to me, I’d rather not know.”

Diagnosis of Dementia What do we do?

Diagnosis of Dementia Educate that all memory loss is not dementia Educate about possibilities that can cause memory loss Educate the reasons that diagnosis should happen as early as possible Do not cause undue stress or anxiety

Diagnosis of Dementia Being honest about the diagnosis of dementia “should be the usual practice.” Use the name of the diagnosis Outline expectations for the future Be clear that there are treatment options for symptoms Be clear that, at this time, this is a terminal disease

Early diagnosis allows for people to cope with the diagnosis and life changes Diagnosis allows people to make decisions that can enhance the quality of life People can actively participate in planning for their future

Diagnosis of Dementia If diagnosis happens later in the illness, try to determine a person’s capacity It is ethical to provide diagnosis information to a person’s health care surrogate if capacity is not present or the patient cannot remember.

Advance Directives in AD Do Not Resuscitate/Allow Natural Dealth Durable power of attorney for health care Living will Physician order for life sustaining treatment (POLST)

Advance Directives in AD Early diagnosis is critical for patient autonomy What may occur? What is treatment like? What alternative treatments are possible? When to do what?

Advance Directives in AD Who is designated HCPOA? How do you choose? Isn’t the next of kin literally next? Do you want to place this burden on the HCPOA? Readdress older directives in light of the new diagnosis!!!

Advanced Directives in AD What happens if someone is “happy” later? “Such critics present a [sic] idealized image of the person with moderate dementia who is enjoying the moment. What they neglect is the brutal reality that this disease is going to enter an advanced and terminal stage that might be grossly protracted in the absence of an indication of wishes…[Also they] have badly understated the importance of assuring intact persons that…their wishes against the protraction of morbidity in the advance stage of AD will be honored.” -Post SG. Key issues in the ethics of dementia care. Neurol Clin. 2000;18:1011–22.

Caregiving Ethics: The White Lie “I left my scarf on the bed. Someone stole it!” A. Tell the patient the truth(autonomy) B. Tell a lie (paternalistic)

Caregiving Ethics: The White Lie Tell the patient the truth. Patient may not believe caregiver May incorporate confrontation into a persecutory delusion May induce self punishment May accept the truth of this

Caregiving Ethics: The White Lie Tell a lie May still get angry May not have the fear component May accept the explanation

Where’s My Spouse? A patient asks where their spouse is when the spouse has already died. Tell the truth? Lie?

Where’s My Spouse? Repeatedly telling the truth subjects the patient to shock, horror, and overwhelming grief. “Well, he (she) went to work and will be back later.” “Oh good.” Most experts agree that giving patients emotional peace over cognitive truth is ethical.

Where’s My Spouse? Other experts feel that it is never appropriate to lie to an AD patient. “I have such special memories of Dad. It’s hard to believe he’s been gone 10 years now. Tell me about Dad.” Howe EG. Ethical Issues in Diagnosing and Treating Alzheimer’s Disease. Psychiatry. 2006 May;3(5):43-53. Telling the white lie “oversteps the bounds of caregiver integrity and could backfire in obvious ways.” Bell V, Troxel D. The “knack” of Alzheimer's care. Caring. 1997;16:26–39.

End of Life Care An 82 year old lady with moderate Alzheimer’s disease has a stroke. She is not able to eat. Her advance directive stated she was not undergo artificial nutrition and hydration for life prolongation. A feeding tube (G tube) was placed with an agreed upon 30 day trial period. She went to a nursing home for rehab with no results and 20 days later converted to a long term care bed with hospice care.

End of Life Care On day 30, the daughter who is also her HCPOA elected to stop artificial nutrition and hydration. The nursing home told the daughter that the patient had either be fed through her tube or leave her residence at the nursing home immediately. The daughter could not take her home due to lack of caregiver availability.

End of Life Care “Research supports that the highest quality of end-of-life care for individuals with advanced dementia is provided though a palliative or comfort oriented approach. The Association supports decisions to forgo hospitalization and invasive treatment, including cardiopulmonary resuscitation, dialysis, artificial nutrition and hydration, in favor of palliative and comfort care in the person’s residence (home or care facility).” - The Alzheimer’s Association.

Thank You! Any Questions Or Comments? The Alzheimer’s Association Alz.org Caregiver Center Ethical & Care Issues