Hope, The Continuing Self, and Deeply Forgetful People Stephen G. - - PowerPoint PPT Presentation

Hope, The Continuing Self, and Deeply Forgetful People

Stephen G. Post, MD post@stephengpost.com

Hope and Continuing Selfhood

• Jerome Groopman MD, wrote in The Anatomy
• f Hope (2005): “Hope is the elevating feeling

we experience when we see – in the mind’s eye – a path to a better future” (xiv)

• Hope is to optimism as joy is to happiness
• Realistic and focused on the continuing self

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• Stephen I am so grateful to you for writing this document on Hope. There

is such a need for families and those who are deeply forgetful to hear this

• message. I spent three hours yesterday afternoon with my sister and I

tried so hard to make sure that every facial expression, the tone of my voice, the intentionality of my focus was positive and loving. I didn’t understand a word she said but it didn’t matter. I felt love by being loving and Wendy felt love by receiving my love. At the end of our visit she said ”I want you to stay with me always.” I noticed she liked to touch things that were shiny but soft and colorful…hints of the wonderful artist and painter she once was…now the colors she is made up of are being expressed differently…what you would call I think looking for surprises.

Cathy Chapin, Community Relations & Program Support, 101-81 Baseline Rd. W. London, ON N6J 4Y5

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• A medical student recently (November 2015) described his

grandfather’s “terminal lucidity” – a frequently described phenomenon in psychiatric and hospice literature - after months of being entirely unable to communicate due to Alzheimer disease. My student chose to focus his essay on his mother’s interaction with her father just before his death:

• It was in his last moments that my mother seemed to be

rewarded for all her hard work. My grandfather looked at my mother and spoke to her with completely lucidity for the first time in a year. He talked about the old times when he used to walk her to school. Then he talked about me and told her to make sure I kept working hard in school. And the last thing he said was how proud he was of her and that he loved her. The next morning he was gone.

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• In a similar case, Olivia Hoblitzelle (2008),

author of Ten Thousand Joys & Ten Thousand Sorrows: A Couple’s Journey Through Alzheimer’s emailed me on 12 April 2013, a few days after we shared a panel together at the Times Center in Manhattan for the New York Alzheimer’s Association’s Charles Evans Lecture. Olivia has read something of mine, and wrote:

• It reminded me of a moment with my beloved

mother, a poet, author, and something of a

• philosopher. In that late stage when words

are gone except for those very occasional moments, she looks at me intently and said forcefully, “God, physics and the cosmos.”

Mirth: Dr. Foley

Musicandmemory.org

• Medial Prefrontal Cortex (just behind the

forehead) links memory, music and emotion

• Appears to be one of the last parts of the brain

to atrophy in progression of AD

• Petr Janata, “The Neural Architecture of Music-Evoked

Autobiographical Memories,” Cerebral Cortex, Vol. 19, 2009, p. 2579-2594.

• http://aging.med.nyu.edu/research/chorus The

Unforgettables

• Tremendously hope-giving mainly to

carers and loved ones

Forms of Cognition

• See www.LivingwithAlz.org
• Jim’s twig, Cleave’s hat
• Rationality as a decisional capacity is not

morally important. It is rationality as a source of self-identity that matters – i.e., “who” we are rather than “how” we proceed. And in this sense, the deeply forgetful can be surprising.

Hope = Being Open to Surprises

• AD is a progressive illness, but carers

note an uplifting “sporadic” dimension to the experience of AD when they detect elements of continuing self-identity

• Individuals might chime in for a few words of

a deeply learned song or a line of poetry, reach out in joy to give or receive a hug, laugh or smile with a characteristic mirth, appear serene when hearing a hymn, or identify with a favorite symbol

“Hypercognitive” Values

Hope at St. Patrick’s Hospital for the Mentally Infirm (12,000 Pounds)

• “Not fear but care” (Bethlehem/Bedlam)
• No violence or cooling
• In “the vicinity of general medical care” (St.

Steven’s)

• Residents from Dublin region so family

members could visit weekly and pray with loved ones

• In 1742, after writing his will, Swift himself

succumbed to dementia that he feared

T4 Tiergartenstrasse 4, Berlin

• 70,273 in asylums killed in research
• September 1939-August 1941
• About half with “senile dementia”
• “Life unworthy of life” “Useless eaters”
• Mainly “hypothermia studies”
• Aryans, not Jews or Gypsies

Hope in Pharma? 2006 The NIH Gets Honest

 “Currently, no evidence of even moderate scientific quality exists to support the association of any modifiable factor (such as nutritional supplements, herbal preparations, dietary factors, prescription or nonprescription drugs, social or economic factors, medical conditions, toxins, or environmental exposures) with reduced risk of Alzheimer’s disease.”  http://consensus.nih.gov/2010/alzstatement.htm

Research, Proxy Permission & Assent: Tacrine & Blood Draws

• Hope and Tacrine: “I am knee deep in my

wife’s diapers, and I’ll try anything!”

• If potential therapeutic

value to subject, then ethically acceptable to use proxy permission even if greater than “minimal risk” (“significantly” or “slightly”)

• If no potential

therapeutic value to subject, then proxy permission allowed

• nly if the research is

“minimal risk”

• “Minimal risk” from

whose perspective?

• Who defines

“potential”?

Abuses

• Example 17: “Live cancer cells were injected

into 22 human subjects as part of a study of immunity to cancer. According to a recent review, the subjects (hospitalized patients) were ‘merely told thy would be receiving ‘some cells’ - … the word cancer was entirely

• mitted….” Henry K. Beecher, “Ethics and

Clinical Research” (NEJM 1966)

Pharmacological Treatment

• Many patients receive a cholinesterase

inhibitor and a glucose antagonist (it is weakly purported that together these may slow symptomatic progression)

• No memory is regained and decline continues,

although some individuals may be able to delay nursing home placement for a year (more or less, maybe)

• On a scale of 1 to 10

Failed Preventive Interventions

• No impact in presymptomatic use of

Aricept in persons with “MCI” (pre-AD)

• Estrogen replacement appears not delay

AD onset in women at higher risk due to first degree relative with disease

• No benefit shown for use of ibuprofen and
• ther NSAIDs, Ginko Biloba, etc.
• 2012 NIH PS1 study of Columbian

extended clan of 5,000 people in Medellin using Crenezumab (amyloid plaques in the brain) seems like a stretch

Hope in Anti-Aging Science?

• Aging is the major susceptibility factor, 50% of

NIA budget focused on anti-aging science

• Decelerate aging consistent with compression
• f morbidity?
• Tolkien, C.S. Lewis

Is Healthy Aging the Answer?

• Diet (fruits, vegetables)
• Exercise
• Social and intellectual engagement
• Avoid protracted stress (possible role for

spirituality)

• Walk peacefully with friends to a Greek

restaurant and then hit the library to read and meditate

Hope in Love for Deeply Forgetful People

• “As caregivers, we

should talk even to the most cognitively disabled, calling them by name, expecting an answer (which, sometimes surprisingly may come). We should speak with a warm and calm voice, with a joyful facial expression, bending down to make eye contact, communicating with them rather than around them. We can use pictures, music, hymns, Scripture, poetry, meaningful symbols, and short simple prayers. “SGPost, “Alzheimer’s & Grace” First Things 2004

Time & Living In The Moment

• The deeply forgetful help you get there

because the present is natural for them.

• Mr. Fred Rogers: “I believe that appreciation is

a holy thing – that when we look for what’s best in a person we happen to be with at the moment, we’re doing what God does all the

• time. So in loving and appreciating our

neighbor, we’re participating in something sacred.”

Is Grandma Still There?

• “You don’t have a soul. You are a soul. You

have a body.” (attributed to C.S. Lewis)

• The Serenity Prayer:
• Serenity to accept the things I cannot change,

Courage to change the things I can, and Wisdom to know the difference.”

BIG ETHICS QUESTIONS

• Moral Considerability (woman in Waterbury,

Ct.)

• Neurological Residue or is Is Grandma Still

There? Atman = Brahman in Gambier)

• The Balance of Filial and Social Duties
• Pre-emptive Suicide (Janet Adkins, Dr. K,

Oregon and the Netherlands)

Everyday Ethics Questions

 Restrictions on Driving (Leo)  Diagnostic Disclosure (Murray)  Enrollment in Research  Autosomal Genetic Testing – PS1, PS2 (A Woman from Chicago)  Susceptibility Testing (REVEAL APOE-e4)  Advance Planning (durable power of attorney for healthcare)

Pain! Nutrition & Hydration (the PEG)

The Under Treatment of Pain

• Prevalence of pain in elderly nursing home

residents, about half of whom have dementia, is 40-80% (e.g., arthritis and other chronic conditions)

• Symptoms attributed to dementia may actually

be indications of pain (e.g., agitation, aggression)

• Only after 1980 did physicians concede that

babies can (a) feel/experience pain and (b) be emotionally affected by it. Some of the scale items for infant pain include crying, facial expression, posture of trunk, posture of legs, and restlessness.

• No use of pain medication in NICUs in the

1970s

Scales for Assessing Pain

• 12 scales that center on categories of breathing

(labored, noisy, hyperventilating), vocalization (moaning, crying out, “ouch”), facial expression (frightened, frowning, grimacing, contorted), body language (curled up knees, clenches fists, tenseness, rigidity, pushing away caregivers, rubbing), behaviors (increased agitation, irritability, changes in sleeping patterns, loss of appetite, crying, wandering)

• The Pain Assessment in Advanced Dementia

(PAINAD) can be used in a bout five minutes by a nurse observer, and there is on on-line video demonstration at http://links.lww.com/A251

• Numerous studies show that analgesic trials can be

effective across all these categories, and certain painful activities can be modified

But Treatment Can Be Heavy: Jack

• “An 85-year-old man with class IV heart

failure, hypertension, and moderate Alzheimer’s disease is admitted to the hospital after a hip fracture. His postoperative course is complicated by pneumonia, delirium, and pressure ulcers

• n his heals and sacrum. He is losing

weight and unable to participate in rehabilitation because of his confusion. This is his fourth hospitalization in the past year.”

(Morrison and Meier, “Palliative care,” NEJM, Vol. 350, 2004,

• pp. 2582-2590)

Harvey

• Harvey has advanced AD, cannot

communicate verbally, and spends much of the day rolling himself on a wheelchair. He has severe arthritis in both knees, for which he receives cortisone injections every three months, and acetaminophen as needed. About a month after his most recent injection, he is reluctant to get into his wheelchair: he groans during transfer, clenches his fists, pushes caregivers away.