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.

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.

Who’s in Charge of Your Health Care?

by Jan Simpson  Who’s in charge of your health care? No one, according to Atul Gawande, M.D., who spoke at Harvard Medical School’s 2011 commencement. “Medicine’s complexity has exceeded our individual capabilities as doctors. It’s like no one is in charge, because no one is.” According to Dr. Gawande, as our knowledge about the human body has exploded (there are  more than 13,000 diagnoses, 6,000 prescription drugs, and 4,000 surgical procedures), patient care has suffered.

Consider the following statistics:

  • Two million patients pick up infections in hospitals in the U.S., mostly because of poor antiseptic precautions;
  • 40 percent of patients with coronary disease and 60 percent of patients with asthma receive incomplete or inappropriate care;
  • One-half of medical complications is avoidable.

These are frightening statistics, especially coming from Dr. Gawande, a gifted surgeon, author, and advocate for change in the way physicians practice medicine. According to Dr. Gawande, the source of this trouble is that physicians are trained and encouraged to work independently rather than in coordinated teams. He suggested that these newly graduating physicians cultivate the ability to work with colleagues like pit crews, rather than cowboys, for patients. Dr. Gawande’s full speech may be accessed here.

Forgive my cynicism for I love Dr. Gawande, the Justin Bieber of medicine. His words are always thought provoking as he challenges all within the health care system to improve patient care. Yet, I suspect that these young Harvard-trained physicians, sitting on mountains of student debt, likely envision futures as specialists or surgeons like Gawande himself, not working more anonymously as part of a “pit crew.” “Cowboys and Pit Crews” may sell magazines, but it will take time to change the way physicians deliver care.  Meanwhile, what’s a family with an ill parent or older loved one to do?

Intuitively, most of us know that the best way to care for our older loved ones is to have a relationship with one physician and minimize the time spent in the system, especially time spent in hospitals, where patients are vulnerable to infection, medical errors, or worse. Family physician and geriatrician, Dennis McCullough, M.D., who has practiced medicine for thirty years cautions, “Most geriatric doctors I know would not want their own parent in a hospital without a family member in attendance at all times.”

As a practical matter, sitting round the clock with a parent in the hospital isn’t possible. But, having spent a decade in the system with my own parents, I would like to share ten tips that can help you get the best possible care for your loved ones.

1.) Create a one-page medical fact sheet that includes a list of prescriptions, allergies, and contact information for next of kin. Leave a copy at the nurses’ station.

2.) Tell the nurses and the physicians which family member to contact with medical information. Assign one or two family members to be the conduit of all information, otherwise pieces of information may be lost if or when serious decisions need to be made. One of these members should be your loved one’s legal health care agent (see earlier blog post “Health Care Proxy & Five Wishes – at 18 and 81”). If your loved one hasn’t assigned an agent, ask the hospital for a form and complete it immediately.

3.) Spread family visits out throughout the day and evening. Try to have some family members visit around lunch and dinner time to ensure that your loved one is eating adequately.

4.) Unless your loved one has dietary restrictions, bring a frappe or Ensure to boost spirits and help keep him or her well-nourished. Do not assume that he or she is eating well.

5.) Keep a notebook on your loved one’s nightstand and ask family members to record information about each visit (e.g., Did Mom get her evening meds? What did Dad eat for dinner?). This is particularly important if your loved one is frail or may have memory lapses due to medication or illness.

6.) Bring a pound of coffee or a box of chocolates as a gift for the night nurses. Nothing is more appreciated by nurses than an acknowledgment of their help. Evenings are often when your loved one will be alone, and this gesture may ensure that he or she gets a bit of extra attention.

7.) If your elder is frail, post a one-page note about him or her and include a family photo from younger days. A young intern might find it interesting that the elder gentleman he or she is caring for was once a fighter pilot or a scratch golfer, and, as a result, may spend a bit more time with him.

8.) Remember that the average number of health care providers your loved one will see is nineteen, and much of the care will be uncoordinated. Do not hesitate to ask questions; reach out to the doctors in person, by telephone, or email. Be assertive but polite. Most health care providers appreciate family members who show authentic interest in helping a parent. Take notes in a medical diary so you can refer to them later.

9.) Make an appointment with the hospital social worker (in person or by telephone), even if your parent will be returning home. Ask about local caregiving resources, options for rehabilitation, etc. One of your best sources of information will be the social worker.

10.) Ask specifically about the timing for discharge and the kind of support that you will be getting. You don’t want to be surprised by an early morning call from a nurse saying your parent is being discharged and find your family unprepared to provide the home care that will be needed to support his or her recovery.

Above all, get your parent out of the hospital as soon as possible. With all respect to the many physicians, nurses, social workers and health care providers who work tirelessly to save lives and care for our loved ones, Dr. Gawande is wrong. There is someone in charge of the care of our loved ones: their family.

If you have any additional tips on how to manage hospital stays, I hope you will share them here.

©Circle of Life Partners™