BOOK REVIEW: Being Mortal by Atul Gawande

by Janet Simpson Benvenuti

Let’s talk about death, or better yet, dying. Our guide is Dr. Atul Gawande, brilliant surgeon and best-selling author, who weaves a compelling narrative that informs, enlightens and challenges clinicians and senior housing leaders to improve the way our institutions of care impact lives. Unlike his previous books The Checklist Manifesto: How to Get Things Right, Complications: A Surgeon’s Notes on an Imperfect Science, and Better: A Surgeon’s Notes on Performance, Gawande gets personal in Being Mortal: Medicine and What Matters in the End, with a perspective enriched by his father’s end-of-life journey. “We are not ageless,” Gawande writes, pushing readers past the denial that afflicts both the physician and the patient. Our goal, he continues, is “not a good death, but a good life to the end.”

The challenge, of course, is how to achieve that goal when only three percent of medical students receive training in geriatrics. While Gawande and his colleagues at Ariadne Labs focus on physician education, Being Mortal provides insights that readers can use with their own families.

My favorite tip was his description of ODTAA Syndrome, the signature way to tell when a patient or loved one is nearing the end of their lives. ODTAA Syndrome is when one experiences “One Damn Thing After Another,” a sure sign that the body is weakening and starting to fail. While the medical community uses clinical markers and checklists for stages of dying, this intentionally amusing name most clearly describes what families experience.

Long before ODTAA syndrome begins, older people with medical concerns face three housing choices: aging in a home setting with assistance, moving to an assisted living community, or moving into a skilled nursing home. While each option has benefits and challenges, Gawande describes resources worthy of consideration.

1. The Eden Alternative – As a new medical director of Chase Memorial Nursing Home, Dr. Bill Thomas found that residents were suffering from boredom, loneliness and helplessness. His solution? Admitting 100 winged and six four-legged residents. Gawande shares this hilarious story about the founding of the Eden Alternative; you may find nursing home communities that subscribe to their philosophy here.

2. Assisted Living Communities – As a caution to families, Gawande reminds us that today only 11 percent of assisted living communities “offer both privacy and sufficient services to allow frail people to remain in residence,” the original intent of Dr. Keren Brown Wilson, the founder of the first community for assistance in Portland, Oregon. One of the model organizations recorded by Gawande is Sanborn Place, led by friend Jacquie Carson who provides the kind of passionate advocacy and skilled care all elders deserve.

3. Palliative and Hospice Care – Perhaps the most useful guidance in Being Mortal were the examples of how patients, including his father, weighed treatment options during the last few years of their lives. Highlighting the importance of palliative consultations and hospice care, Gawande used his father’s fear of becoming a quadriplegic to demonstrate those often difficult conversations about care options, conversations that are the focus of the 5 Wishes, The Conversation Project, and the popular card game My Gift of Grace.

Here is an excerpt of the questions a physician trained in palliative care might ask.

1. What do you understand your prognosis to be?
2. What are your concerns about what lies ahead?
3. I need to understand how much you are willing to go through to stay alive.
4. What are your goals if your condition worsens?
5. If time becomes short, what is most important to you?

Unfortunately, until more physicians and health care providers are trained in palliative care, it remains for family members, especially those who are designated as health care agents, to clarify their loved one’s wishes. Being Mortal gives families insight into how to have those conversations. Buy a copy and use it to start the conversation with those you love.

HIGHLY RECOMMENDED. You may purchase a copy here.Being Mortal: Medicine and What Matters in the End

c 2014 Circle of Life Partners, LLC. All rights reserved.

What Immigrants Teach us about Aging

Bowne Park 2014 by Janet Simpson Benvenuti

Last Sunday, my early morning walk took me to Bowne Park in North Flushing, NY an oasis of trees, grass and walking paths surrounding a pond in the borough of Queens. I wandered past the neatly manicured lawns of single family homes first built by the successful physician and attorney sons of Irish and Italian immigrants, now inhabited by their Korean and Chinese counterparts. I joined the dog walkers doing laps around the park, past the basketball court where my son once played, perfecting his three point shot through a chain-link hoop. On one end of the court, a future Jeremy Lin practiced his layup while on the other, four grandparents stretched in synchronous motion, practicing their tai chi.

Ahead, an elderly woman stepped up and down the on the lower rung of the climber where my daughter once scampered gleefully showcasing her skills on the slide and jungle gym. On my left, another did gentle pushups on the back of a park bench near which two men and a woman chatted, speaking in tongues and sharing a laugh.

I live in two worlds. In one, I engage with global leaders worried about an aging America. State governments shudder at the cost of long-term care. Health care providers predict rising demand while business leaders offer employees flexible benefits and housing leaders construct more assisted living complexes, anticipating future demand from aging boomers. In this world, I speak nationally about strategies for supporting an older America, coach families who need guidance through the perplexing maze of available options while encouraging entrepreneurs bursting with ideas that can make a difference.

In the second world of my personal life, I see easy solutions that are blind spots to those whose vision of the future includes separating seniors from their families. I returned home from my walk, climbed the front stairs, and unlocked the door of my mother-in-law’s home that I have shared for the past twenty years. Despite the street appearance of a single family home, the interior opens to three separate apartments each inhabited by family members. As children and teenagers, a visit to grandparents by my children meant running upstairs while a trip to their great-aunt and uncle required a loop outside to the backyard and three steps back inside to knock on their kitchen door. My husband, his brother and cousins were raised in this home along with their grandmother after whom our daughter and niece are named.

This week, we put the family home up for sale. At 89, it’s time for my mother-in-law to transition to a new home closer to her physician son. With only two days notice, 19 realtors attended the open house, and we received 15 offers within five days, all but one from Asian families planning to use the home as it was intended, a place of inter-generational love and support, with walking access to stores, the post office, buses and the railroad, a 20 minute commute to downtown Manhattan.

In few decades, my husband and I will need to downsize. Will we move into a retirement community in a sunny locale, find an assisted living community to live with strangers, or will we build a new three family home and invite our children and theirs to grow old with us? Only time will tell.

c 2014 Circle of Life Partners, LLC. All rights reserved.

Know Your Money: The True Cost of Long Term Care

Calculating the Cost of Care

Calculating the Cost of Care

by Janet Simpson Benvenuti

Recently I asked our financial advisor to do some retirement planning and estimate expenditures through the end of my life. To my surprise, my husband and I both are going to die at age 87 (for the record, I will predecease him), spending $100k/year in today’s dollars for each of the last three years of life. Amused, I wondered where I would find care for $100k in Massachusetts. The last assisted living facility with a memory unit I visited cost $8700/month without hairdressing or a personal care attendant. I’m sure to need both. And only three years of care? Prudently, one would plan for at least six, and with any history of longevity or cognitive impairment, I would plan for 12.

That same day, I spoke with a different financial advisor whose 91 year old client has Alzheimer’s disease. He and his spouse reside in Connecticut and spend a more typical $15,000 a month for assisted living with an aide for additional support, $180,000/year. When I reminded that advisor that home care for someone with Alzheimer’s disease is tax deductible as a medical expense, she expressed surprise, unaware of IRS Publication 502.

What’s going on here? Why are financial advisors so ill-informed about the true cost of care?

Quite simply, few people, including financial professionals, understand the extraordinary cost of long-term care and the options available to manage expenditures wisely in the last decade of life.  Effective financial planning requires more than just the skills to create an investment portfolio or project future expenses, but integrated knowledge about finance, elder law, insurance, health care and inexpensive community resources for aging in place. It’s why I founded Circle of Life Partners.

I’ve been guiding families through the aging journey for years, yet I still find the numbers shocking. Recently, I received a call from a family of three adult children who were growing concerned about their mother’s ability to care for their father safely at home. He was three years past his initial diagnosis of Alzheimer’s disease and the family felt he might be best served by moving into an assisted living facility with a memory unit although he did not have long-term care insurance. I calculated the price tag for nine years in a highly-regarded memory unit and subsequent skilled nursing care, $835,000- $1.25 million. Using an adult day health program or a part-time companion suddenly seemed a much more reasonable option.

Last week, I wrote about the Bipartisan Policy Center (BPC) launch of a new initiative on long-term care led by former Senate Majority Leaders Tom Daschle (D-SD) and Bill Frist (R-TN), former Congressional Budget Office Director Alice Rivlin, and former Wisconsin Governor and Secretary of Health and Human Services Tommy Thompson.  BPC’s Long-Term Care Initiative will propose a series of bipartisan policy options in late 2014 to improve the quality and efficacy of publicly and privately financed long-term support services. Read the white paper here to learn more and follow their work @BPC_Bipartisan.

Let’s hope they can get their arms around this issue. Until they do, I’ll continue guiding families to the resources they need, until I need the same support, at age 84.

©2014 Circle of Life Partners, LLC. All rights reserved.

Home Care, Adult Day Health and Supportive Living

sanborn placeby Janet Simpson Benvenuti

Each month I visit assisted living and continuous care retirement communities to learn more about housing options for seniors. While most are well-managed, beautifully-appointed communities replete with book clubs and outings, dining rooms and transportation services, I remain uncomfortable that these communities are financially out-of-reach for the majority of moderate-income families. Last week I visited Reading, Massachusetts, population 24,747, to meet Jacqueline Carson, executive director of Sanborn Place, an integrated care solution for lower income seniors and adults with disabilities that includes home care, adult day services, and a continuous care housing option. Recently, Sanborn Place has received national attention and will be featured in Dr. Atul Gawande’s next book on elder care and end of life.

Here are the three programs Jacqui supervises:

Sanborn Home Care provides home care services in short increments, if necessary, working in partnership with the local Visiting Nurses Association, the VNA of Middlesex East.

Sanborn Day is an adult day health center with capacity for 75 seniors or younger people with disabilities. Visually resembling the lobby of an upscale hotel, the center provides breakfast and lunch, exercise classes in partnership with the local YMCA, physical therapy, medication supervision, counseling for caregivers, and activities including a pool table, crafts, and computer games such as the Dakim Brain Fitness Program. My visit interrupted a game of charades with a roomful of joyful elders and it included an unanticipated discussion about the Massachusetts governor’s race with a well-informed senior.

Sanborn Place is a non-profit, federally funded facility for seniors whose incomes do not exceed $33,050 (single) or $37,800 (couple). Upon arrival, I was greeted by four older women sitting in the lobby who proudly revealed their ages: 93, 95, 87 and 83 as they awaited their friend, age 102, who was taking a nap. The community has 73 units, half assigned to seniors who require daily support, others for those needing weekly support or none at all. Each apartment includes a living room and kitchen with a private bath and bedroom not unlike those in high-end communities. Seniors remain in their apartment until the end of their lives.

Payment for these services comes from many sources including Medicare (for skilled nursing care and PT or OT services), HUD, the Veterans Benefits, and Mass Health.

While many communities offer similar programs, what’s unique is the integrated way that care is provided and the number of private citizens involved. Jacqui oversees the delivery of these three programs supported by a stellar team of professionals and individuals like brothers Gregg and Bruce Johnson, who created DKJ Foundation in honor of their father to raise funds for Sanborn Place. You may learn more about their foundation here.

As the tsunami of boomers age, many without enough family members to fill the role of caregiver, I remain encouraged and inspired by people like Jacqui, Bruce and Gregg who take responsibility for the well-being of all of the older citizens in their town and do so with a passionate commitment to help them remain a vibrant part of the community they’ve always called home.

© 2013 Circle of Life Partners, LLC. All rights reserved.