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 30th
Street
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
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).
·
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
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
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
The Trouble With Advance Directives
ReplyDeleteMARCH 13, 2015
Paula Span
…Ever since Congress passed the Patient Self-Determination Act in 1990, health professionals and consumer advocates have urged Americans, especially older adults, to draw up advance directives and distribute them to families and doctors. The documents allow people with terminal illnesses to accept or reject medical interventions and to appoint surrogate decision makers if they become incapacitated.
The campaign does seem to have paid off in one sense: Among Americans over age 60, the proportion who had advance directives when they died rose to 72 percent in 2010 from 47 percent in 2000, according to data from the national Health and Retirement Study.
Too often, though, an advance directive hardly seems to matter. Stories abound of documents misplaced, stashed in safe deposit boxes, filed in lawyers’ offices. Dr. Aslakson remembers a frantic search to unearth a directive that was eventually found tucked into a Bible.
Frequently, “the directive never gets to the right place, or isn’t referred to when a decision needs to be made,” said David M. English, chairman of the American Bar Association’s Commission on Law and Aging.
And when hope trumps documentation, the patient’s instructions can be overridden…
But advance directives also fail because they are not medical orders. Their vague or outmoded language — When is a condition “terminal”? How long must a “persistent vegetative state” last? — doesn’t tell physicians exactly how to proceed.
“The ambiguities can result in receiving treatment for a longer time while they’re ironed out,” said Dr. Susan Tolle, director of the Center for Ethics in Health Care at Oregon Health & Science University.
Moreover, emergency medical personnel operate under standing orders to attempt resuscitation, whatever an advance directive says. (Only a state do-not-resuscitate or Polst form can prevent that.) “You may already be on a breathing machine before you pull into the E.R.,” Dr. Tolle said.
The Polst form does a better job than advance directives of keeping dying people out of hospitals, research has shown. Completed by health care professionals in consultation with patients, this document can stipulate that only comfort measures be applied, or full life-prolonging interventions — or various options in between.
But a Polst can’t always substitute for an advance directive. It is meant for people with severe illnesses: Asked if the patient’s death within a year would be a surprise, their doctors would say no. “Most people over 65 are still too healthy to have a Polst,” Dr. Tolle said.
Besides, putting Polst into effect requires a coordinated statewide system involving hospitals, nursing homes and hospices. Oregon and West Virginia, the pioneers, have well-developed systems with electronic registries, said Dr. Alvin H. Moss, who directs the West Virginia University Center for Health Ethics and Law…
In the meantime, people who aren’t sick or frail, but have strong feelings about what should happen when they are, can’t rely on a Polst or an advance directive alone.
What they really need, experts say, is an ongoing series of conversations with the relatives or friends who will direct their care when they no longer can. In a crisis, doctors will turn to those people — more than to any document — to learn what the patient wants.
Triggering those discussions may be the most useful thing an advance directive accomplishes. (Websites like The Conversation Project andPrepare can help.)
“Talk about what things make life worth living for you,” Dr. Aslakson advised. People feel reassured, even downright virtuous, when they have completed their paperwork, “but if the family doesn’t know about it, if the medical team doesn’t know about it, it might as well not exist.”
http://www.nytimes.com/2015/03/17/health/the-trouble-with-advance-directives.html
The American Crisis Around Dying Persists
ReplyDeleteposted 04.06.2015
By Ira Byock
A crisis exists in the way we support one another and experience the last phases of life. Contributing causes are delineated in Dying In America, and in six other Institute of Medicine reports since 1997 that address the way our nation cares for seriously ill people and their families.
Why the Crisis Continues
Three decades of progress in geriatrics, hospice and palliative medicine have proven that much better care is feasible and affordable. So why does this crisis persist? The reasons are part demographic, part economic and, most of all, cultural.
Demographics: Twin tidal waves of aging and chronic illness have already begun creating unprecedented floods of unmet need. Many states and local communities are overwhelmed by the demand for medical and social services, including housing, nutrition, homecare and transportation support. Things are only going to get more challenging in the decades ahead.
Economics: Innovative approaches to whole-person and family care reliably demonstrate lower total healthcare costs, but in so doing, shift revenue from doctors, hospitals, pharmacies and related industries to long-term care, home health and hospice, care coordinators, and preventive health and aide-level personnel. When revenue streams are threatened, the status quo wields enormous heft. Current corporate efforts to maximize profits keep staffing short, patient loads high and the emphasis on productivity. A daily tyranny of the urgent hobbles innovation, collaboration and redesign within healthcare.
Culture: Americans possess an admirable zeal for protecting and preserving life, but our culture is immature when it comes to facing infirmity and dying. Our generation has been given hitherto unimaginably powerful abilities to fight disease and forestall death, but not the wisdom to use them. Because science hasn’t made a single human being immortal, at some point, saving life must share priority with other goals.
Change Means More Communication
Operationally, we know what success looks like. It’s not rationing. Rather, it is through meticulous communication and decision making. When one has conversations with patients, very few want to die in an ICU during maximal efforts to prolong their lives. Most want to fight their disease only as long as their quality of life is worth living and there are good treatments for their condition. Then, when it becomes their time to leave this life, the large majority would like to be at home, with attention to their comfort and their dignity, surrounded by people they know and love and who love them.
Enlightened approaches to caring for and supporting frail and physically or cognitively dependent elders include PACE, Eden Alternative, the Green House Project, Comfort Matters and Planetree models. In multiple studies, concurrent palliative care and earlier use of hospice is associated with improved outcomes for incurably ill patients with heart failure, cancer and dementia, including fewer crisis ambulance transfers, and less time spent in hospitals and ICUs. Enhanced quality of care, higher patient and family satisfaction, and lower total costs all are achievable. Caregivers benefit, too. Whenever it is measured, clinical staff satisfaction goes up and levels of moral distress plummet.
The secret sauce common to all these models is a mature recognition of the precious value and fragile nature of mortal life. It’s reflected in unwavering commitment and meticulous attention to people’s comfort and well-being that includes regular conversations to ensure medical treatments are consistent with each person’s values, preferences and priorities…
Ira Byock, M.D., is executive director/chief medical officer of the Institute for Human Caring of Providence Health & Services in Los Angeles, Calif. He is a professor of medicine at Dartmouth’s Geisel School of Medicine in Hanover, N.H., and author of The Best Care Possible (New York: Avery Trade, 2013).
http://www.asaging.org/blog/american-crisis-around-dying-persists
LGBT Senior Care Facilities Bill of Rights Unanimously Approved
ReplyDeleteBy Marcy Adelman
On March 31, the San Francisco Board of Supervisors unanimously approved the groundbreaking LGBT Senior Long Term Care Facilities Bill of Rights. The much-needed ordinance, the first of its kind in the country, had been strongly recommended by the LGBT Aging Policy Task Force.
…Now, with the new ordinance, it will be illegal to discriminate against patients in long-term care facilities based on their sexual orientation, gender identity, gender expression or HIV status.
We know that LGBT seniors in nursing homes and assisted living facilities are at their most vulnerable. At a time in your life when you need to focus all of your resources on getting well and staying as healthy as possible, the last thing you need is to have to fight for your right to be treated with dignity and respect. A survey, however, by the National Senior Citizens Law Center (NSCLC, 2011), which included San Francisco and Bay Area respondents, found that these might well be the circumstances you will face.
In the NSCLC’s study, 43% of the LGBT participants reported experiencing and/or witnessing discrimination in long-term care facilities, and almost 90% of LGBT care facility respondents reported that it would be unsafe to be openly LGBT in a facility. One 83-year-old San Francisco respondent reported that the staff of his partner’s nursing facility was so uncomfortable with his being gay that they refused to bathe him for more than two weeks.
The LGBT Aging Policy Task Force prioritized the need to protect this vulnerable population by recommending legal protections and by providing clear and simple guidelines to prevent mistreatment, especially for transgender seniors. Guidelines for culturally competent LGBT client-centered services are not only necessary, but are also often requested by senior service providers themselves who are unsure how best to serve their transgender clients.
The new city ordinance is detailed in its description of the senior serving facilities’ responsibilities towards LGBT residents. Discrimination in admissions, transfer, eviction, room assignment and visitation are clearly laid out. For example, in regards to transgender seniors, the law mandates that facility staff respect transgender and gender non-confirming individuals’ identity and expression for bathroom use, preferred names, pronouns and dress. To ensure the effectiveness of this proposed ordinance, facilities are required to designate a staff member as an LGBT liaison and the San Francisco Human Rights Commission is empowered to investigate and mediate any complaints.
http://sfbaytimes.com/lgbt-senior-care-facilities-bill-of-rights-unanimously-approved/
We should be creating dementia-friendly communities
ReplyDeleteG. Allen Power6:41 p.m. EDT July 24, 2015
…Dr. Richard Taylor, a decorated psychology professor at a Texas university, was diagnosed with early stage Alzheimer’s and informed his department chair, submitting a proposal to use his graduate students to assist him in organizing his lessons. The university terminated his employment the next day. Over a decade later, Richard has been one of the leading voices of advocacy and education about the needs of people living with dementia.
Clearly someone who has accomplished all that Richard has in the past decade could have continued to be gainfully employed.
Last week marked the 25th anniversary of the Americans with Disabilities Act. It also marked the 2015 White House Conference in Aging, during which leaders pledged to embrace a long-overdue process to create “dementia-friendly” communities in the US. This juxtaposition suggests an opportunity to consider a radical, but important concept — one that likely would never have been considered in the past.
It is time to bring social disability policy to the family of conditions we call “dementia.”
This would provide people with the opportunity to have the help they need to remain meaningfully engaged, in work or volunteerism. It would also reduce the burden of excess disability that “prescribed disengagement” creates for people who have much to offer, and who are often providing needed income and child support as well.
A diagnosis of dementia does not mean that the person is immediately incapacitated. Indeed, meaningful engagement may well delay progression of disability. The best way to support the rapidly expanding population of Americans living with dementia is to be more than simply “dementia-friendly.” We must support policy that creates a path to true inclusion in our communities. This will not only help people to live better, more purposeful lives; it will likely reduce the financial cost of illness and dependency as well.
G. Allen Power is a geriatrician, author, and international educator on transformational models of care for older adults, particularly those with changing cognitive abilities.
http://www.democratandchronicle.com/story/opinion/guest-column/2015/07/24/creating-dementia-friendly-communities/30644655/
RIP RICHARD TAYLOR PHD
JULY 27, 2015
The members of Dementia Alliance International (DAI) are deeply saddened by the death of Dr Richard Taylor, who passed away at his home on July 25th, due to cancer.
Richard always began his videos and presentations with: “Hello. My name is Richard, and I have dementia, probably of the Alzheimer’s type.” Hello is such a simple word, but it in some ways it epitomised Richard, as his focus was on our continued humanity, and not on our deficits; everyone deserves a hello.
Richard was inspirational, and his influence on not only his family and close friends, but also on a vast number of people living with a diagnosis of dementia of this or that type, and those that care for us, paid and unpaid, around the world, was truly significant.
He was a founding member of DAI, and had the dream for this group for longer than anyone else that I know of. Together, with him, DAI was created; an advocacy and support group, of, by and for, people with dementia.
http://www.dementiaallianceinternational.org/rip-richard-taylor-phd/
Imagine a Medicare ‘Part Q’ for Quality at the End of Life
ReplyDeleteBy KATY BUTLER
DECEMBER 9, 2015 3:45 AM
,,, Medicare as currently organized is fine for the “young old” – those in the 65- to 80-year-old range who play tennis, visit museums, volunteer at food banks, and generally manage their own lives. Resilient enough to survive a major surgery, they’re well served by a Medicare that pays handsomely for hip and heart valve replacements. Medicare’s also not bad for those with swiftly fatal diseases: a hospice benefit covers those with less than six months to live.
But for those in between, there’s a terrible gap. A little less than half of Medicare patients between the ages of 75 and 84 (and a little more than half of those over 84) are coping simultaneously with four or more incurable conditions, including slowly fatal diseases like heart failure, emphysema, kidney failure and dementia. Nearly half of people age 85 and older need help with at least one basic life task, such as walking or driving. More than two-thirds of the sickest elderly end up in an emergency room each year, and over a quarter visit three times or more.
They end up there not because it’s the best place for them, but because, as the health policy expert Muriel Gillick of Harvard has written, Medicare pays poorly for primary care and supportive services except within hospice. Small problems become big, and then Medicare covers an unending cycle of expensive emergency room visits, hospital stays, and aggressive Hail Mary treatments that can do more harm than good. As a result, Dr. Gillick writes, Medicare “shapes the way we die” by funneling us toward a high-tech hospital death.
That’s why I think we need an optional new Medicare benefit. It would be called Part Q, for Quality of Life. Only those who seek it out could sign up. Democrats should love it for expanding services. Republicans should love it for expanding freedom of choice without raising costs. Those who don’t like it can leave it alone. But I’d join as soon as I turned 80 — and earlier if I developed chronic health problems.
Once I signed up, a coordinated Part Q primary care team — a concierge medical service for the 99 percent — would take responsibility for all my medical care until my death. Over time, it would help me make the transition smoothly from useful curative approaches to those focused on sustaining my quality of daily life, to “comfort care only” and, I hope, a gentle death at home. Doctors, nurses and home health aides would come to the house for as long as I needed them. I’d get up to two years of hospice benefits, rather than the current arbitrary six months. And I’d save Medicare money.
To qualify for Part Q, I would promise, upfront, to forgo medical treatments that evidence shows are outrageously expensive, not cost-effective, painful to endure, and likely to extend my life, if at all, by only months…
Yes, I might die too soon rather than too late. But I’d have a better shot at what the John A. Hartford Foundation’s health policy program officer Amy Berman calls “the Niagara Falls trajectory”: maintaining a high quality of life for as long as possible, followed by a mercifully rapid decline…
I wonder how much suffering might have been avoided if a home-centered program had been available to my parents in their final years. I hope that 10 or 20 years from now, I’ll have a chance at something better. By then, I hope, priorities in Medicare will have shifted, programs like these will serve millions, and some version of Part Q will be in effect. At the age of 84, I don’t want to shuffle into an emergency room as my father did, suffering from a broken wrist, when what I need most is physical therapy at home, respite for my caregiver, and five cents’ worth of advice to take up the throw rugs.
http://opinionator.blogs.nytimes.com/2015/12/09/imagine-a-medicare-part-q-for-quality-at-the-end-of-life/
Using the Arts to Promote Healthy Aging
ReplyDeleteBy JANE E. BRODY
MARCH 7, 2016
…across the country, the arts in their myriad forms are enhancing the lives and health of older people — and not just those with dementia— helping to keep many men and women out of nursing homes and living independently. With grants from organizations like the National Endowment for the Arts and the National Institute on Aging, incredibly dedicated individuals with backgrounds in the arts have established programs that utilize activities as diverse as music, dance, painting, quilting, singing, poetry writing and storytelling to add meaning, joy and a vibrant sense of well-being to the lives of older people….
Tim Carpenter, the executive director of EngAGE, is now working to expand this approach to senior living in other cities, including Minneapolis, Portland, Ore., and Raleigh, N.C. His goal is to create a nationwide network of programs for seniors that keep them healthy, happy and active through lifelong learning in every conceivable art form, enabling them to live independently as long as possible.
As in Burbank, Mr. Carpenter is promoting the development of arts colonies in senior residences where residents can study and create art in all its forms and where they can see their artistic creations come to life on a stage.
Dr. Gene D. Cohen, a gerontologist at George Washington University who died in 2009, was a staunch advocate for the mental and physical benefits of creativity for the elderly. He directed the Creativity and Aging Study, a controlled study sponsored by the National Endowment for the Arts at three sites, including Elders Share the Arts in Brooklyn, N.Y., that showed after only a year that the health of elders in the cultural groups stabilized or improved in contrast to a decline among those in the control groups.
In a film called “Do Not Go Gently,” Dr. Cohen, who founded the Creativity Discovery Corps, featured an architect who, at age 96, submitted a plan for redeveloping the World Trade Center site. Dr. Cohen pointed out that creativity challenges the mind and results in the formation of new dendrites, the brain’s communication channels.
At 26 different facilities in the Washington, D.C., area, 15 teaching artists work with seniors in centers where they live or visit regularly. Janine Tursini, director of Arts for the Aging in Rockville, Md., seeks to “get at what best jazzes up older adults.” Groups of about 20 older adults get involved in what she calls “art making” — music, dance, painting or storytelling.
Ms. Tursini said the N.E.A.-sponsored study showed that when older people become involved in culturally enriching programs, they experience a decline in depression, are less likely to fall and pay fewer visits to the doctor. In another study among people with Alzheimer’s disease, a sculpting program improved the participants’ mood and decreased their agitation even after the program ended.
“The arts open people up, giving them new vehicles for self-expression, a chance to tell their stories,” Ms. Tursini said. “The programs capitalize on assets that remain, not on what’s been lost.”
Naomi Goldberg Haas created the Dances for a Variable Population program to get older adults dancing. People who haven’t moved in years, even those who can no longer stand, can participate. Young professionals and older dancers go to various sites — libraries, churches, senior centers — where elders gather and encourage them to “move more.”
“Movement enriches the quality of their lives,” Ms. Haas said. “It’s absolutely healing. Balance, mobility, strength — everything improves.”
Social engagement, which nearly all these programs provide, has been repeatedly found in major population studies to prolong life and enhance healthy aging. Clinically, the programs have been linked to lowered blood pressure, reduced levels of stress hormones, and increased levels of the “happiness hormones” that are responsible for a runner’s high.
http://well.blogs.nytimes.com/2016/03/07/using-the-arts-to-promote-healthy-aging/
The conversation about dying is not enough
ReplyDeleteBy Ann Neumann
March 21, 2016
If you are a woman in your late 40s, like me, chances are that you’re responsible for caring for an elder adult — a parent, an aunt or uncle, a family friend. When my father died of non-Hodgkin lymphoma in a hospice facility in 2005, I was woefully unprepared for the challenges of caring for him, the anxiety, the sleeplessness, the bone-numbing grief, the disruption of my career.
For decades, we’ve treated caring for an elder as though it’s merely the unique challenge of adult children. That’s changing as a host of factors have made elder caregiving a national issue. The result is that, finally, we’re having a public conversation about how we deliver end-of-life care. Yet, what we’re saying won’t solve the well-documented crises the country faces over the next 30 years.
As with Atul Gawande’s bestselling book, “Being Mortal,” the message is that we can best address these issues by talking. If we just ask seniors what they want as their health and abilities decline, we’re told, they, their doctors — and we — will be better prepared for what lies ahead.
But what lies ahead for the country as the population ages will require more than personal responsibility and conversation.
Thanks to a new Affordable Care Act inclusion, doctors are now paid for talking with elders about their end-of-life plans. Yet, it requires that patients initiate this conversation, something many are unprepared to do. And so a majority of American elders spend many of their last days hospitalized, receiving medications and treatments that are painful, isolating and will not cure their impending death.
No matter how strongly we are implored to have the conversation, however, those likely to miss it make up a segment of the population that needs resources and care the most: minorities, the uninsured and undocumented, those on the lower socioeconomic rungs of our country’s class ladder.
What’s needed, and fast, are systemic changes — social, medical and legislative — that address disparity in end-of-life care. But systemic change will require an unprecedented economic, legal and cultural shift.
In an article in the Journal of the American Medical Association, Daniel Shalev tells the story of how he first met a terminal patient when he was in his third year of medical school. “Prior to Ms. Nichols,” Shalev writes, “I had spent my time caring for patients with curable, acute conditions like pneumonia or colitis.” Attending to Ms. Nichols taught Shalev some important lessons: Good care doesn’t always include prescribing more treatments or medications; and good care can be as simple as making sure a patient is comfortable.
Medical training doesn’t often enough give new doctors the skills elders need: how to deliver terminal diagnoses; and how to not see the end of treatment as failure. Shalev doesn’t prescribe a way to rectify this inadequate exposure and experience. But I have one. By matching two needs — the lack of elder care training for medical students, and an inadequate number of hospice volunteers, medical schools could better prepare new doctors. Enrolling medical students in hospice volunteer training programs, which are free and already exist in every corner of the country, would go a long way in preparing the medical field for the coming elder population.
Inadequate elder care for any of us means health care costs and inefficiencies that will affect us all. Finding creative solutions for the elder care crisis won’t be easy, but we really have no other choice.
Ann Neumann, the author of “The Good Death: An Exploration of Dying in America,” (Beacon Press, 2016)...
http://www.sfchronicle.com/opinion/openforum/article/The-conversation-about-dying-is-not-enough-6931905.php
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