Good End of Life

At Books, Inc. Opera Plaza, Katy Butler introduced her new book, The Art of Dying Well: A Practical Guide to a Good End of Life, intended to be a “workaround” to the problem of medical interventions used to prolong life at the expense of quality of life, as her father’s painful 5-year dying process described in her first book, Knocking on Heaven’s Door: The Path to a Better Way of Death (2013). 

Sociology Professor Becky Yang Hsu discussed her upcoming book, Happiness in China: Family, Fate, and the Good Death, at the University of San Francisco. She explained that death can be “happy” in China because it is a social event which strengthens existing relationships: 

·       Interacting with the dead in the context of family lineage rituals is a regular feature of China (e.g., household shrines, visiting graves, tomb-sweeping holiday, etc.)

·       People talk about preparing for one’s funeral as a good and happy event (e.g., preparing burial clothes)

·       Family, especially relationship with parents, is central for the young and urban (e.g., affirming family lineage brings calm).

In China, where death is frequently reinforced as a social phenomenon that is meaningful and represents a next step towards something that is continuous with one’s social relationships, people can feel calm and even happy about it.  

In contrast, critics often say people don’t know how to die in the United States because people endure painful and often pointless medical procedures for a chance to gain a few days of extra life, consume a lot of resources and time delaying the inevitable, and then are expected to make their own peace by themselves in their last days or hours.  Becky suggested that perhaps understanding death in an asocial way makes it difficult to die a good death, and misunderstanding death as solitary makes it harder for the living to grieve.

Normalization

In No Pity: People with Disabilities Forging a New Civil Rights Movement (1993), Joseph P. Shapiro noted that deinstitutionalization and the community living movement in the 1960s was driven by the rise of the concept of normalization.  This sociological (as opposed to medical) approach to disability has application to all who wish to age in place by normalizing aging and dying:  ask the elderly what matters in the end. Nothing about us without us!

“The normalization principle means making available to all people with disabilities patterns of life and conditions of everyday living which are as close as possible to the regular circumstances and ways of life or society.”

– Bengt Nirje on Normalization, which laid the groundwork for social inclusion and self-determination for people with disabilities

“Normalization demands …an entire spectrum of community living arrangements to serve all ages and age appropriate behavior levels, to address progress, integration and independence appropriate to a person's age and competencies.” – William G. Bronston, MD, on Concepts and Theory of Normalization 

Normalization means giving people with disabilities (including older adults) the same opportunities in life that others have.  The person is not the one being forced to be normal, but the environment is changed to give this person a chance to experience what is considered "normal." 

Senior & Disability Action staff presented Disability & Ableism Training, including skit on how to communicate and interact effectively with people with disabilities.

Nourishing the whole person

Normally eating can be a pleasurable activity, but can be challenging to those with dental problems (missing teeth, adjusting to dentures) or medical conditions (dry mouth, fatigue).  In my work with seniors, I routinely assess for nutritional risk asking, “Do you have tooth or mouth problems that make it hard for you to eat or chew?” When a client responds in the affirmative, my follow-up question is, “Would you like to change to a mechanical soft diet?”  Initially clients resist saying that they “don’t want any pureed baby food.”  Then I explain a mechanical soft diet includes a spectrum of different textures and consistencies (soft, liquid, blended, chopped, ground or minced) so it’s easier to chew and swallow.  The following are sample foods prepared by Meals On Wheels of San Francisco—so you see, these meals are age-appropriate for senior clients! 

Mechanical soft pork loin in sesame with peas & curried lentils: looks similar to kitfo (Ethiopian minced meat) or moo-shu (Chinese ground pork) moistened with sauce/gravy! 

Salisbury steak in mushroom sauce with broccoli, cauliflower & carrots

Dementia = Being present (tense)

At SFSU Counseling Student Association’s 5^th Annual Counseling Symposium, Nader Shabahangi and Sally Gelardin of AgeSong presented on 17 Things I Would Want, If I Get Forgetful (adapted from Rachel Wonderlin’s 16 Things I Would Want, If I Get Dementia).  Nader’s introduction raised the issue of labeling that separates humanity; for example, “disabilities” suggests being outside of the mainstream, rather than different functional abilities giving rise to possibilities.  Another example is “dementia” meaning “out of one’s mind” (from Latin), and this could suggest emptying the mind as in Zen enlightenment.  

Instead of the scientific view of dementia with its emphasis on cure, Nader talked about adopting an attitudinal shift towards a humanistic view of forgetfulness with an emphasis on care.  He noted that forgetfulness has a purpose to “let the mind go” of memories causing pain or embarrassment, to slowly work one’s way through death.  “If we view elders as our teachers, then forgetfulness as our teachers” that push us to learn wisdom and qualities like being present. 

  

Contemporary Jewish Museum’s Access Program hosted The Power of Art and Music: In the Lives of Those Living with Alzheimer’s seminar exploring research on creativity and the brain, and how arts and cultural experiences can enrich the lives of people living with Alzheimer’s or dementia.  The panelists included:

• Zachary Miller, MD Assistant Professor of Neurology, UCSF Memory and Aging Center – Neuroscience of Visual Art: lefty doc noted greater number of left handers in mental asylums & artistic behavior among mentally ill
• Lola  Fraknoi, founder of Ruth’s Table and Art Time Programs for a Creative Life  - Prompting to Make Art kit to release creativity in persons with moderate dementia
• Andrea Korsunsky, Coordinator for Center for Dementia Care, Seniors at Home, a program of Jewish Family and Children’s Services (JFCS) - Communication Strategies: use nonverbal body language to listen & be present, avoid word “remember”, ask for help & support in community
• Rachel Main, Family Support Coordinator, Ray Dolby Brain Health Center, Alzheimer’s Association – Why is Music and Art Important in Daily Life for People with Dementia? Engage both sides of brain to reduce 4 A’s (agitation, anxiety, apathy, aggression) & replace antipsychotics, focus on strengths that remain. 

Lola's examples of Prompting to Make Art: 1st slide (top left) shows beginning sketch of open image as visual cue for persons with Alzheimer’s to “think outside the box” and continue the drawing. 

Other resources:

·         TimeSlips 

·         Alzheimer’s Poetry Project 

·         NCCA Creative Caregiving 

Care giving/taking

At Ed Roberts Campus, UC Davis Alzheimer’s Disease Center and Alzheimer’s Association presented the 8th Annual African-American Caregiving and Wellness Forum: Focusing on Brain Health and Disease Management, which included a discussion moderated by Miranda Wilson of Smooth Jazz 98.1 FM:

·         Rita Hargrave, MD, geriatric psychiatrist at Veterans Administration

·         Yaisa Andrews-Zilling, PhD, who also presented on Recent Developments in Alzheimer’s Research: prevent and reduce risk by paying attention to heart health, exercise (African-Americans at highest risk of ethnic groups due to higher rates of cardiovascular disease, obesity & diabetes), brain stimulation/education/novelty, nutrition, social and emotional well-being

·         LoWanda Moore, MSW, who also presented on Taking Care of the Caregiver, demonstrated relaxation techniques like deep breathing and guided imagery

Elena Portacolone, PhD, of UCSF Institute for Health & Aging, is recruiting older adults age 65+ who are living alone with either Alzheimer’s disease or mild cognitive impairment for a research project, supported by National Institute on Aging and Alzheimer’s Association (which offers Dementia Capable Services & Supports, a free program to assist people living alone with dementia in San Mateo).  

Alzheimer’s Association Community Outreach Specialist Debbie Williams quit her job (supported by husband Lenny of Tower of Power) to care for her mother who was diagnosed with Alzheimer’s.  Though anyone with a brain is at risk, she emphasized that African-Americans are typically diagnosed in later stages of disease when they are more cognitively and physically impaired, needing more medical care yet less opportunity for input in long-term care and financial plans.

Treating Sickness & Death = Palliative & Hospice Care

Nearly half of all people with Alzheimer’s and other dementias are in hospice care at the time of their death, yet fewer than half of surveyed nursing homes have some sort of palliative care program.  Palliative Care and Hospice Education and Training Act (PCHETA) would increase palliative care and hospice training for health care professionals, launch a national campaign to inform patients and families about the benefits of palliative care, and enhance research on improving the delivery of palliative care. 

JFCS Seniors At Home launched a new Palliative Care Lecture Series, "Let's Keep Talking About..."  Psychotherapist Sylvia Boorstein and JFCS Director of Palliative Care Program Redwing Keyssar began the community conversation with “Let's Keep Talking About Old Age, Sickness, and Death - Liberating the Hard Questions from the Shadows.”

• Old Age:  Sylvia embraces old age by disclosing that she is 80 years old
• Sickness & Death:  Sylvia said if one gets cancer, one who thinks why me? suffers a lot; but one who thinks why not me? does not suffer so much.  Accept that death happens so don’t struggle with what can’t change.  Redwing expressed her disappointment reading Dr. Paul Kalanithi’s memoir, When Breath Becomes Air (2016), because the doctor dying of cancer only mentioned palliative care at the end, no mention of spiritual care but only medical treatment.

Redwing shared palliative care physician Ira Byock’s The Four Things That Matter Most: A Book About Living (2004) -- “Please forgive me,” “I forgive you,” “Thank you,” and “I love you” – the role of forgiveness as an opportunity to let go. 

At Books Inc., Pamela Skjolsvik read excerpts from her memoir Death Becomes Us (2015) about overcoming social anxiety disorder and fear of mortality.  Her use of humor to normalize death is similar to mortician Caitlin Doughty, author of Smoke Gets in Your Eyes & Other Lessons from the Crematory (2014) and founder of Order of the Good Death.

Aging policies

At Home With Growing Older hosted Brooke Hollister, Assistant Professor of Sociology in the Institute for Health & Aging at the University of California, San Francisco, for a discussion on Communicating Aging Issues At The Policy Level.

Congress finally passed legislation to reauthorize Older Americans Act (OAA), which President Obama signed into law this month—nearly five years after it expired  -- a symbolic act as funding remains flat for OAA programs like Meals On Wheels.  For example, government funding provides only 40% of the operating budget for Meals On Wheels of San Francisco (MOWSF), which fundraises the remainder; this month's MOWSF Star Chefs & Vintners Gala raised $3.3 million or 25% of its annual budget.  In contrast, Medicare expenditures doubled between 2005 and 2015, suggesting that unmet social needs are "medicalized" and delivered in higher-cost settings.

Booksmith hosted panel discussion on Marijuana in the Haight: From the 1967 Grateful Dead Bust to Legalization in 2016 with these movers and shakers: 

• Andy Clark, Assistant District Attorney
• Dennis McNally, The Grateful Dead’s publicist and historian
• Michael Stepanian, who formed the Haight-Ashbury Legal Organization (HALO) to defend the Grateful Dead who were busted for marijuana in 1967
• Marsha Rosenbaum, who made available free copies of Safety First release by Drug Policy Alliance
• Steven Heilig, San Francisco Medical Society and member of Lt. Governor Gavin Newsom’s Blue Ribbon Commission on Marijuana
• David Talbot, founder of Salon and author of Season of the Witch, a cultural history of San Francisco
• David Smith founded Haight Ashbury Free Clinic (HAFC) to care for young drug users and Rock Medicine to provide medical services at Bill Graham concerts.

Is medical marijuana as effective as opiates in treating pain?  Timely topic, especially following 57-year-old artist Prince’s death of possible opioid overdose.  In contrast to the epidemic of deaths from opioid overdose, the death rate from marijuana overdose remains zero.  And legalization of marijuana could generate tax revenue to fund senior services!

The New York Times' article, “U.S. Suicide Rate Surges to a 30-Year High,” (April 22, 2016) reported that from 1999 to 2014, suicide rates in the United States rose among most age groups:

• Men and women from 45 to 64 had a sharp increase
• Though suicide rates for older adults fell over the period of the study, men over 75 still have the highest suicide rate of any age group — 38.8 per 100,000 in 2014, compared with just 4 per 100,000 for their female counterparts.

Does Death With Dignity normalize suicide?

Stefano Bini, MD, UCSF Professor of Clinical Orthopaedics, highlights “Age is not a problem” during his presentation on Total Hip and Knee Replacement as a Treatment for Arthritis and New Developments.

DAAS Benefits & Resources Hub Grand Opening

San Francisco Department of Aging & Adult Services (DAAS) opened its Benefits and Resources Hub as a one-stop shop for the public to access in-person intake services (Adult Protective Services, In-Home Support Services & Home Care, Nutrition, Case Management, Information & Referral to Community Services), benefits (CalFresh, Medi-Cal), and Veterans Services.

Entrance to 2 Gough Street

Signs in English, Chinese, Spanish

Check-in with Greeter (gatekeeper) who asks for name & purpose of visit

Service counter

Waiting area