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 of 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
Vignette 1 • 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
Vignette 2 • 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.
Vignette 3 • 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 If no potential value to subject, then therapeutic value to ethically acceptable to subject, then proxy use proxy permission permission allowed even if greater than only if the research is “minimal risk” “minimal risk ” (“significantly” or • “Minimal risk” from “slightly”) 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 omitted….” 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 other 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 of 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)
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