Being Mortal book review #9

BEING MORTAL by Atul Gawande Metropolitan Books

Dr. Atul Gawande is a surgeon and professor at Harvard Medical school. Both his parents were doctors and immigrants from India. He has written extensively on improving American medical practice, and this latest of his books, published in 2014, addresses the need for more intelligent care of the very old.

For most of human history, people who reached old age were cared for by their children or grandchildren. For those who had no family, there was, in the 1800's, the “Poorhouse”, which provided bare existence.

Two new developments came in the early twentieth century: (1) The Great Depression, that in USA prompted the creation of the Social Security Act in 1935, and allowed workers to accumulate funds for retirement. (2) The on-going progress in medical education gave doctors and hospitals the tools to prolong life – antibiotics, surgical procedures, better nursing care, etc.

We doctors were taught that death is the enemy, and longer life the victory. How to live that longer life was not part of medical school curriculum. With the illness or injury successfully dealt with, the patient gets discharged from the hospital with a brief list of instructions.

More and more, however, the healed one lives long enough to encounter lasting disabilities that the family is not equipped to handle: arthritis perhaps, or a “weak heart”, or failing memory. Not something that required returning to the hospital, but more than could be treated at home.

Thus came extended care in a “nursing home”, giving the patient time to convalesce, or perhaps get physiotherapy exercises. Those not able to recover (in the doctor's judgment) stayed on and on as permanent residents. Avoiding bedsores and maintaining the resident's weight and safety are worthy goals but the daily routine is usually run like an institution, not like the home the resident had left behind. Independence, privacy, and personal goals are mostly ignored.

“This simple but profound service,” writes Gawande, “--to grasp a fading person's need for everyday comforts, for companionship, for help achieving modest aims—is the thing that is still so devastatingly lacking almost a century later.” Around 1990, a company called Assisted Living Concepts went public and proved so popular that by the year 2000 its number of employees had grown from less than 100 to 3000, operating 184 residences in eighteen states. So popular that developers called almost anything “assisted living”, watered down versions with fewer services. Assisted Living has come to now mean a step between independent living and full nursing home care, with staff efficiency the key theme.

Bill Thomas, an upstate New York family doctor summarized the atmosphere of his town's nursing home as “boredom, loneliness, and helplessness.” He set about to bring in some life.” Green plants in every room. Bring in some animals – two dogs. “New York state code allows only one” his Board said. “And two cats on each floor,” he went on. (“The code won't allow both dogs and cats” said the administrator.)

“Let's just write them down. For discussion. Now about birds. Start with a hundred—at least one per room. Birdsong is the sound of life!”

“ARE YOU OUT OF YOUR MIND!” But the administrator didn't actually say no. With paperwork in hand, Dr. Thomas drove to Albany to lobby the State Board personally. He came away with a permit, waivers, and a small financial grant for this experiment.

A truck delivered 100 parakeets. No cages had arrived, so the delivery man put them in the nursing home's hair salon. 100 cages arrived that afternoon, but needed assembling. The staff spent hours chasing the parakeets through a cloud of feathers. Many residents took amused interest in watching through the windows as the staff struggled. “They laughed their butts off,” Dr. Thomas recalls. But having living creatures to care for brought new life to many of the oldsters. So did an after-school program welcoming children of staff to hang out and spend time getting acquainted with individual residents. Things were becoming more like home. And in the long run, the patients required fewer medicines, and fewer surgical operations

That's the main theme of Dr. Gawande's book. What does the eighty or ninety-year-old want to achieve in his/her limited remaining years? In taking the time to discuss this with his patients, he found that even those with Alzheimer's dementia still have goals. Not all the same goals, but each has his own. “I want to live as long as I can still eat chocolate ice cream and watch football on TV,” said one.

A piano teacher had fought cancer for months, only to have complications of her surgery and chemo bring her closer to her end days. Some at that point might have accepted “death with dignity”. She chose hospice care instead. In her remaining six weeks, she taught the piano students she loved for four weeks. And her old time students from around the country returned to play a concert for their beloved teacher.

In summary, Dr. Gawande does not require huge new government programs. Rather he advises doctors, nurses, administrators—and old folks' children--to pay attention, listen, and allow each person to write the end of their own personal story.