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.

Health Care Proxy & Five Wishes – at 18 and 81

by Jan Simpson

Has your 18-year-old signed a health care proxy? Last week, I wrote about a durable power of attorney, one of two legal documents that help family members support an ailing parent or loved one. The second document is called a health care proxy or a health care power of attorney. While we often think about the importance of a health care agent for an older loved one, most parents are less aware of the need to have their 18-year-old assign them as their agent.

A health care proxy is a legal document that gives the person named, often a family member, the authority to make all health care decisions for a loved one if he or she is unable to express his or her wishes. I first learned about proxies when I accompanied my father to the hospital on the day of his lung surgery. When we arrived, as part of the admissions process, my father was given a clipboard of documents to sign. Although my dad and mother had written a will and were diligent about updating it periodically, they had never drafted a health care proxy. According to the clerk, the hospital would not perform surgery unless my dad legally designated a health care agent to make decisions on his behalf, if necessary.

Facing lung surgery with hope and optimism, the clerk’s words sliced though his unspoken confidence about a favorable outcome. A flash of fear crossed his face. “Jan,” he said signing the document and handing it to me, “don’t give up on me.” I took the form and recorded my mother’s name as the health care agent, with me as the alternate. “Don’t worry,” I replied, winking at the nurse while trying to restore his fighting spirit, “you’re the cat with nine lives and this is only number seven.” He laughed and relaxed noticeably.

My dad had thirty seconds to make a decision about a health care agent and how he wanted to be treated.  I would have preferred to talk with him about his wishes over tea or a family dinner.  Fortunately today, 13 million Americans are having those conversations using a document called Five Wishes. In a clear, easy-to-follow-format, this document helps you indicate your wishes about:

  1. The Person I want to Make Care Decisions for Me When I Can’t
  2. The Kind of Medical Treatment I Want and Don’t Want
  3. How Comfortable I Want to Be
  4. How I Want People to Treat Me
  5. What I Want my Loved Ones to Know

Many Councils on Aging, religious organizations, and attorneys are helping older people thoughtfully complete their Five Wishes long before they face a serious medical crisis.  You can order a copy here for $5. (A reminder: I do not have a financial arrangement with this organization). Consider buying a copy and using it to jump start a conversation with your parents.

Older loved ones are not the only family members who need to designate a health care agent.  Consider the following nightmare scenario. Your 18-year old daughter is in an automobile accident and is lying unconscious in the hospital. You rush to the hospital only to learn that you are not legally authorized to access information about her medical status or to direct medical treatment. Read more here and then consider contacting your attorney to draft a health care proxy for your adult children on their 18th birthdays.

Has each adult in your family designated a health care agent?

©Circle of Life Partners™