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.

Let’s Rock and Roll

“Let’s Rock and Roll” poster at Senior & Disability Action office

“It’s shocking how age-segregated American society is …Nothing changes if we stay in our silos, and one of the really, really important things about living in society is having friends of all ages. It connects people empathetically, and that’s critically important.”

--Ashton Applewhite, author of This Chair Rocks: A Manifesto Against Ageism (2016) on why ageism is not ok

  

About a year ago after pondering the value of age-segregation, I left my job at a senior-focused organization to work in disability rights advocacy and later supportive housing.  Since the latter organizations served all ages, my intention was to bring a gerontologist’s perspective and promote intergenerational relationships. 

However, in these environments for all ages, I was disappointed that the concerns of older adults were often marginalized (in favor of investing in the future of younger ages; staff training involved chanting “Youth matters!” and ideas for after-school programs) or equated with children (so occupy their time with bingo games).  Like the late gerontologist James Birren, who found that residents in retirement “age ghetto” communities actually were more satisfied with their lives than were community residents of the same age, I learned from my senior residents that they really preferred the quiet and safety of living in senior housing (--just as I am enjoying this Spring Break week’s peaceful commute on Muni bus, without younger, often boisterous, students onboard).

Like the Parable of the Prodigal Son, I soon realized the error of my idealism for an age-less society when the real world remains ageist, and returned to the Aging Network!

At senior sites where I worked in supportive housing, homebound tenants appeared to be almost as vulnerable as nursing home residents since they must depend on and wait for others’ availability to access food, healthcare, transportation, assistance with activities of daily living, etc.  Thus, I decided to join a senior-focused organization serving seniors who are mostly homebound due to disability (including low-grade agoraphobia, but not by choice like shut-ins who use on-demand economy for convenience).

Disability rights

I learn how to be a better advocate of community living for homebound seniors when I meet disability rights advocates. 

At LightHouse for the Blind, Summer Beasley-Hoffman, an ACVREP certified Orientation & Mobility specialist at Veterans’ Administration, demonstrated two-point touch technique of tapping long white cane from left to right.  She said studies show that using white cane increased yield to pedestrians about 90%!  Good information to share with older adults who believe using a cane makes them more vulnerable because this “advertises” their disability.

 

At Ed Roberts Campus, Ralf Hotchkiss (Whirlwind Wheelchair founder), Anthony Tusler (About Disability consultant), Cathy Kudlick (Longmore Institute Director) and Corbett O’Toole (author of Fading Scars: My Queer Disability History) were panelists in celebration of Paul K. Longmore’s posthumous publication, Telethons: Spectacle, Disability, and the Business of Charity (2016).  The Jerry Lewis telethon for the Muscular Dystrophy Association (MDA) was ageist in parading cute disabled kids as poster-children needing audience’s donations to cure them, while adults who made up two-thirds of MDA’s clients were invisible. The MDA telethon ended last year after a 60-year run.  I like Andrew Pulrang's "Telethon Thoughts" from Disability Thinking: 

  

“Unless you have a disability yourself, you have to think actively and practice deliberate empathy to understand how a well-intended fundraiser can be not only distasteful, but even harmful…

I don’t really object to raising money for medical research into disabling conditions. I resent the fact that the general public is consistently more excited about supporting those efforts than they are about supporting equal rights, equal access, and the nuts-and-bolts stuff disabled people need to live decent lives with our disabilities. It’s strange, when you think about it. “Medical Research” is so abstract, and outcomes so fleeting, while building ramps and buying people speech synthesizers is entirely concrete, with immediate payoff. You would think all us practical-minded Americans would rather give to pay for things people can use, than to provide open-ended funding for fuzzy dreams.”

At SFSU Campus, Smith-Kettlewell scientist inventor Joshua Miele delivered Longmore Institute on Disability lecture on How Access Really Happens: Disability, Technology, and Design Thinking.  Dr. Miele talked about his role as scientist/scholar who is blind and member of disability community to “demand, require, cajole the world into giving what we need to do things we want.”  Dr. Miele’s work involves designing and developing technology for people with visual disabilities relating to access to information, such as tactile maps.  This might involve breaking the rules to get what we want until the rules change, and then real access happens; he said permission is less valuable than the outcome as in the case with his tactile BART station map project, which was completed two years ago without waiting for BART to provide plans, and his ongoing YouDescribe project (to add audio description to YouTube videos).  He reminded us that accessibility principles are not guidelines/standards so we need to go to users who understand what needs are.  

Seniors dominate in end-of-life issues

At SF End-of-Life Network meeting, Co-Chair Nate Hinerman introduced Roy Remer, Director of Guest House Facility and Volunteer Programs at 6-bed Zen Hospice residential care facility for chronically ill and 60-bed hospice/palliative care floor at Laguna Honda Hospital.  Zen Hospice integrates social and medical services with spirituality (Zen mindfulness) to enable the dying to live fully toward the end. Its caregiver volunteer program is rigorous, involving 43 hours of training, minimum 1 year commitment of 5 hours each week.  Outside of Zen Hospice, Roy guides wilderness rites of passage to prepare us for death and help us in the process of grief.  

At SFSU, Gerontology Professor and Interim Faculty Director at the Institute for Palliative Care Brian de Vries moderated a panel discussion with BJ Miller, MD (Zen Hospice), Rabbi Eric Weiss (Bay Area Jewish Healing Center), Redwing Keyssar, RN (Jewish Family and Children Services) and Daphne Stuart, LCSW (UCSF Symptom Management Service) on Everything You Wanted to Know About Palliative Care in San Francisco.  In a nutshell, palliative care is person-centered and multidisciplinary focused on improving quality of life, including pain and suffering relief, psychological/spiritual support for patient and family, and conversation on choice and hope.  Hospice is a form of palliative care, but most palliative care is not end-of-life care or hospice. 

Shireen McSpadden, Interim Director of San Francisco Department of Aging and Adult Services, remarked that several panelists (Miller, Keysaar, Weiss) serve on San Francisco Palliative Care Task Force, which produced its 2014 Final Report. 

At The Booksmith, Ann Neumann and Katy Butler discussed their respective books, The Good Death: An Exploration of Dying in America (2016) and Knocking on Heaven's Door: The Path to a Better Way of Death (2013).  Katy noted their commonalities (journalists who wrote books about their fathers’ deaths) and differences (20 years apart in age; Katy’s father had too much treatment prior to his death at age 80, while Ann’s father had too little treatment prior to his death at age 60).  According to Ann, who became a hospice volunteer after her father's death, there is no “good death,” but always pain, loss, disparities in health care, etc.  Katy is writing her next book, Good End-of-Life: A Practical Guide, which will include ideas like tripling payments to hospice, lengthen Medicare hospice eligibility from last 6 months of life to 1 year, and consumer lobbying.

Advocacy

To advocate for aging services, Coalition of Agencies Serving the Elderly (CASE) urged members to attend monthly meetings of San Francisco Commission on Aging, which oversees the budget for Department of Aging and Adult Services (DAAS).  CASE represents 37 agencies and their 20,000+ elderly constituents in San Francisco.  

At February 4 Commission meeting, seated from left to right, in photo above, are Commissioners Samer Itani (dentist), Katie Loo, President Edna James (nurse/health educator/gerontologist and nonprofit OMI Community Action Organization President), Kaushik Roy (nonprofit Shanti Project Executive Director), Neil Sims (executive search firm partner), and DAAS Executive Director Anne Hinton. 

Public comment by CASE Secretary Valorie Villela (also 30^th Street Senior Center Director), a tree hugger who suggested less printing of agenda which is sent out to regular attendees. 

Anne and Edna congratulated DAAS Employee of Month, who received a desk clock in appreciation.  

Municipal Transportation Agency Board member (and DAAS Manager) Tom Nolan reported last month’s approval of free Muni for low-and moderate-income (up to $67,950 for single person) seniors (age 65+) and persons with disabilities (PWD), effective March 1, 2015...thanks to grassroots advocacy! Tom reported 20,000 seniors and PWD had already applied, and anticipated 25,000 to sign-up.  He said Muni is for everyone, but especially those who need it most.   

Marie Jobling reported Community Living Campaign launched Tech Council (public-private partnership to expand technology access) the previous day, and Long-Term Care Coordinating Council will hold tenth year celebration this year. 

CASE Co-Chair Michelle Alcedo (also Openhouse Programs Director) presented CASE advocacy platform requesting funding to: 1) increase staffing for community services, 2) increase staffing for Aging and Disability Resource Centers (ADRC, which has lacked Tagalog speaking staff since July 2014 though Tagalog has been certified as third language for City communications), and 3) pay more “equitable” salaries for case management positions because nonprofit agencies struggle to recruit and retain talent when County salaries are “much higher.”  In addition, CASE seeks to extend free Muni to include group van and ADA transportation and 4% cost of doing business increase for FY 2015-16. 

DAAS Program Support Analyst Monte Cimino requested authorization for additional funds to Mental Health Association of San Francisco (MHASF) for expanding hoarding support services to non-English speakers. Commissioners responded with ayes.

DAAS Nutritionist Linda Lau had longest presentation requesting authorization of $5 million in add-backs for nutrition, including three new meal sites and expansion of Choosing Healthy and Appetizing Meal Plan Solutions for Seniors (CHAMPSS, which is healthier than CalFresh Fast Food Restaurant Meals Program).

  

“Good end-of-life”

 

Katy Butler, journalist and author of Knocking on Heaven’s Door: The Path to a Better Way of Death (2013), was speaker at this month’s meeting of San Francisco Bay Area Network for End-of-Life Care (SFEOL), co-chaired by Nate Hinerman. Now a Dean at Golden Gate University, Nate was my former SFSU Professor who taught Death and Dying in Contemporary Society.

Katy discussed the contrasting experiences of her parents’ final years: medical technology interventions to keep her dying father alive for “five terrible years,” and her mother’s determination for a better death so she decided to stop eating and drinking after a second heart attack brought her to a hospice wing. (The legal status of such "voluntarily stopping eating and drinking" by advance directive is untested.) She said it takes moral courage to say it’s the end-of-life, which she recognized in her father’s “benchmark” statements:

• “I don’t know who I am anymore” (lost capacities)
• “I am not going to get better” (progressive illness)
• “I’m living too long”

According to Katy, “bad (painful) deaths” are so common because doctors don’t know how to talk to us, insurance pays for the wrong things (cure v. care), and treatments don’t stop until someone just says no (because medicine’s default is to offer all reimbursable treatments). 

Katy recommended Dr. Angelo Volandes’ The Conversation: A Revolutionary Plan for End-of-Life Care (2015), for patients, family members and doctors to honestly discuss the following:

·         What kinds of things are important to you in your life?

·         If you were not able to do the activities you enjoy, are there any medical treatments that would be too much?

·         What fears do you have about getting sick or medical care?

·         Do you have any spiritual, religious, philosophical, or cultural beliefs that guide you when you make medical decisions?

Katy’s presentation reminded me of The New York Times' recent Opinionator piece, “Dying Shouldn’t Be So Brutal,” in which Dr. Ira Byock proposed Safe Dying Act with these components: 1) train “young” (new?) doctors to assess and treat pain, listen to patients’ concerns and collaborate with patients and families in making treatment decisions, 2) require nursing home companies to double staffing of nurses and aides, and hours of care for each resident, 3) set minimum standards for palliative care teams within every hospital, 4) routinely publish meaningful quality ratings for hospitals, nursing homes, assisted living, home health and hospice programs for people to use in choosing care, and 5) repeal the Medicare statute that forces incurably ill people to forgo disease treatments in order to receive hospice care.

Also on my reading list is Atul Gawande’s Being Mortal: Medicine and What Matters in the End (2014), which was excerpted in Slate and featured in this month’s PBS Frontline. 

Community of Voices

At this month's CASE meeting held at Project Open Hand, Community Music Center (CMC) Program Director Sylvia Sherman spoke about her organization’s partnership with UCSF School of Nursing’s Institute for Health and Aging and DAAS, to form Community of Voices research involving a dozen senior choirs throughout San Francisco.  Funded by a five-year grant from National Institute on Aging, this study is in its third year to demonstrate health benefits (lung capacity, balance, coordination, memory, moods) on seniors (age 60+) who participate in a community choir.  Check out video, Can Singing in a Choir Improve the Health of Older Adults? 

  

Caregiving

Another reason to thumbs-up “like” Kevin Winge even more: he’s got his priorities in order, resigning as Project Open Hand (POH) Executive Director to return to his home state of Minnesota to provide care to his sisters who are critically ill.  I liked Kevin’s memoir, Never Give Up: Vignettes from Sub-Saharan Africa in the Age of AIDS (2006, reminded me of my own experience as Global Service Corps volunteer in Tanzania), his monumental decision to remove the soda vending machine (ostensibly to cut unnecessary electricity costs), expansion of POH meals to include clients with ten additional diseases (beyond traditionally served clients with HIV/AIDS and cancer), Food=Medicine Pilot Study with UCSF, expansion of senior congregate meal sites, etc. Kevin will be missed more than the in-house production of peanut butter and beloved macaroni and cheese, which he also removed from POH menu.

Let’s Kick ASS (AIDS Survivor Syndrome) hosted Who Is Going to Care For Us As We Age? A Discussion on Options for Long-Term Care, at LGBT Conference Center with elder law attorney Daniel Redman and NEXT Village Director Jacqueline Zimmer (JZ) Jones.  Daniel provided an overview of the continuum of care (in-home, assisted living, continuing care retirement communities, skilled nursing) from low-income (SSI/Medi-Cal/IHSS) to private pay options, and San Francisco's proposed LGBT Long-Term Care Facility Residents' Bill of Rights. JZ shared the benefits of joining NEXT Village, which serves residents in San Francisco's north east, and tips for LGBT community to start a village of neighbors helping one another so all can successfully age in community.  

Dementia care

 

Preparing for the Changing Horizon: Dementia Awareness and Caregiving for LGBT Older Adults from Diverse Communities included roundtable discussion with keynote presenters David Coon and Karen Fredriksen-Goldsen (author of The Aging and Health Report: Disparities and Resilience among LGBT Older Adults), two caregivers and Michelle Alcedo of Openhouse.  LGBT older adults are more likely to live alone and depend on “families of choice” for caregiving, yet such friends or non-families of origin as caregivers lack legal recognition by the health care system.    

Alzheimer’s Association Director of Diversity Edie Yau moderated panel discussion on Sharing Lessons Learned: Integrating Cultural Values, Beliefs and Practices into Dementia Care of LGBT Older Adults, with Geoffrey Kerchner (Alzheimer's researcher), Lou Bordisso (retired therapist with early-onset Alzheimer's), and two caregivers.  LGBT seniors may fear disclosing their sexual orientation/gender identity and not access services out of fear of discrimination, and few providers have received training to celebrate (not just tolerate) LGBT. Alzheimer’s Association has LGBT Caregiver Concerns brochure and Family Caregiver Alliance has LGBT Caregiving: FAQs.

At AgeSong Guru Project’s Biomedical Convention, psychiatrist and Pacific Institute board member Richard Patel welcomed psychologist (retired) Richard Taylor and geriatrician Allen Power for a discussion about wisdom in changes associated with aging and forgetting.

Richard Taylor, author of Alzheimer’s From the Inside Out (2006), has been sharing his experience since receiving his diagnosis of dementia ten years ago.  He described the disengagement process, and finding the “disease” answers in the medical model do not help.  Rather than being defined by deficits to be fixed, it takes time to find out what he can do and the brain is always trying to figure out, Who am I? What’s going on? Why am I here? He repeats because he wants answers that he can’t hold in his short-term memory.  To understand “problem behavior” (negative label) is to understand who the person is, including unique ways of expression, rather than project needs to quiet behavior with psychotropic drugs.  Richard's call to action is: "Stand up! Speak up! Do not victimize yourself with your own silence.  How will anyone really know what it's like to live with dementia?"  He encouraged us to sign-up for his newsletter at http://www.richardtaylorphd.com/. (Another resource is Dementia Alliance International, established in 2014 and the first international group of, by and for the people with dementia engaged in advocacy to eradicate stigma, isolation and discrimination.) 

Allen Power, author of Dementia Beyond Disease: Enhancing Well-Being (2014), discussed 7 domains of well-being: 1) identity, 2) connections, 3) security, 4) autonomy, 5) meaning, 6) growth and 7) joy.  He cautioned that if you view someone as less than a complete person, then you give less care; and that too much focus is on finding a cure for dementia rather than promoting well-being.

 

Singalong at AgeSong’s Forget Me Not Café: music + cognition.

SFSU gerontology classmate Brittany plays flute at AgeSong’s University campus during Guru Launch Gala.

Psychotherapist Nader Shabahangi, founder of AgeSong and Pacific Institute, moderated discussion of the AgeSong Guru Project, a one-year initiative to “focus on comprehensive care partnerships with elders to understand need-driven behaviors and minimize risky use of psychotropic medication.” 

AgeSong Care Planning Liaison and Pacific Institute Clinical Psychology Ph.D. student Stephanie Rothman’s interest in “what matters in life” led to working with elders, whom she finds more authentic.  She described her disillusionment while attending last year’s Alzheimer’s Association International Conference in Copenhagen that was akin to a pharmaceutical convention.  Instead of drug treatment to make persons with dementia more like us inside, Stephanie seeks depathologizing dementia and psychosocial treatment to see the real person from his/her perspective: we learn from feistiness because we are better off when needs are expressed and supported.

Richard said humanity increases with dementia because you become more of who you are when pretense fades away and you get in touch with your needs for esteem, love and belonging, which you are more willing to express as you get older; forgetfulness gets you closer to humanity because you stay in the present moment to understand now instead of past; instead of looking back at "who I was," now time is spent working on "who I am."  Allen echoed those thoughts about getting to the essence when one is more honest and transparent with fewer agendas, and advocated for an abling perspective so people feel allowed to be.

After the panel discussion, I met Eveline Wu, GCFP, who co-authored the UCSF study on Preventing Loss of Independence through Exercise (PLIE) for Older Adults with Dementia, a non-drug intervention that focuses on training procedural memory for basic functional movements, while increasing mindful body awareness and facilitating social connection.

Hospital discharge

 

At Hospital to Home: A Community Forum on Hospital Discharge, held at 30th Street Senior Center's dining room, DAAS Director Anne Hinton provided an overview of San Francisco’s Long-Term Care Integration Strategic Plan.

 

Senior and Disability Action (SDA) Executive Director Sarah Lehman moderated the panel of speakers:

• Carrie Wong, DAAS Director of Care Transition Operations, explained San Francisco Transitional Care Program (SFTCP) provides services (transportation including medication pick-up, 14 days of meals, 6 hours of homecare) for 4 to 6 weeks, at no cost to eligible San Francisco residents with Medicare Parts A and B who are referred by one of eight partnering hospitals to prevent unnecessary readmissions.  
• Donna Willmott, SDA Consumer Advocate, reminded us that Medicare covers the first 20 days in an approved skilled nursing facility, only if one first has at least three full days of "inpatient" Part A hospital care. However, hospitals are placing more patients under “observation status” to protect themselves against new policies that penalize hospitals for unnecessary admissions.  Therefore, Medicare patients should ask whether they are considered inpatients or outpatients each day they are in the hospital as status can change.  More tips in SDA’s June 2013 newsletter. 
• Marcia Peterzell, Community Living Campaign Connector, discussed Connections for Healthy Aging workshop that covers hospital stay and advocacy.  She distributed Vial of Life kits for us to complete personal identifying information, medical history and information, and emergency contact. 
• Ken Hornby shared his personal experience and the need for self-advocacy to make sure one is heard to get the help needed.  Medicare has Discharge Planning Checklist.

One attendee shared her experience of having her service dog stay in the hospital with her.  (Some institutions recognize doctor’s orders for pet visits.) There were more providers than consumers at this event, which was scheduled at the same time as Ai-Jen Poo's book tour talk on Women, Leadership, and the Future of Care.

“Old is gold”: telephone community

After taking online classes like Coursera’s Living with Dementia: Impact on Individuals, Caregivers, Communities and Societies, conveniently accessible 24/7 with power point presentations, taking classes via telephone seems so quaint.  But a recent Telegraph article, “Why low-tech living is back” declared, “old is gold” with the popularity of printed books, vinyl records, typewriters, retro-phones, and Polaroid instant photo cameras.

 

Staying Engaged for a Lifetime gerontologist Hope Levy introduced Susan Lee Lindeman, Program Manager of Senior Center Without Walls, a “statewide telephone community” serving about 300 older adults age 60+ in California.  SFSU gerontology alum Terry Englehart founded this award-winning nonprofit in 2004 to connect homebound, isolated seniors via telephone in activities such as bingo, improvisation, armchair travel, singalongs, health presentations, book clubs, support groups, etc.  To participate or volunteer, call 877-797-7299.