Book Review, Healthcare

On How We Die

Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.

Dylan Thomas (1951)

Global life expectancy has risen from less than 50.0 years circa 1900 to 72.0 years today largely due to improvements in nutrition and public health. In the 1950s, people over 80 were only 1% of the U.S. population. Today that has quadrupled to 4%. China has more than 100 million elderly people.

The global aging crisis is real, and here. Global prosperity has inverted our traditional population distribution from a bell curve to a pyramid. As a result, the specter of old age is causing global governments to shore up their safety nets, revamp their policies on immigration, and make systemic changes to how we treat the dead and dying. Dr. Atul Gawande, in his sweeping opus Being Mortal, does no less than narrate and propose solutions for the entire issue. In his own words:

This is a book about the modern experience of mortality–about what it’s like to be creatures who age and die, how medicine has changed the experience and how it hasn’t, where our ideas about how to deal with our finitude have got the reality wrong… neither I nor my patients find our current state tolerable. But I have also found it unclear what the answers should be, or even whether any adequate ones are possible.

Though modest, his book is actually a stunning piece of work, and instantly became one of my favorites. Weaving data from demographic, medical, and popular sources with personally touching narratives of his patients and family, Being Mortal tackles the weightiest of all topics and leaves the reader incredibly satisfied.

When discussing this book, it is important to take it in three sections. First, the overarching narrative around “how we age and die”. Dr. Gawande charts the evolution of societies from Pre-Industrial to Developing to Industrial, and the mirror evolution that our treatment of the elderly takes. Second, Dr. Gawande tells a lengthy, complex narrative about his first exposure to caring for a loved one: the death of his grandmother-in-law due to natural mental and physical decline. Finally, Dr. Gawande closes with a very touching (yes, I cried!) discussion of his father’s struggle with, and eventual death from, a rare form of invasive spinal cancer.

The Practice of Aging – Dr. Felix Silverstone

Throughout the first half of the book, Dr. Gawande uses the narrative of Dr. Felix Silverstone, an eminent geriatrician experiencing his own physical and cognitive decline, to talk about the history of aging.

Societies pass through three stages: Pre-Industrial, Developing, and Industrial. In the Pre-Industrial phase (e.g., America before the Civil War, China before accession to the WTO, India in Dr. Gawande’s grandfather’s time), families care for the elderly. A relative lack of geographic mobility, combined with a human predilection to respect the elderly, leads tight-knit kin groups to care for their elders through their final declines. The Farewell, an upcoming movie starring the hilarious Awkwafina, actually touches on the Chinese tradition of surrounding family members in their final days.

Old age is a continuous series of losses. – Dr. Felix Silverstone

Economic development radically changes this familiar formula. As the wealth of a nation increases, the mobility of its citizenry tends to increase as well, leading to families dispersing geographically. In addition, reduced infant mortality rates actually lead to the average number of offspring declining. This combination leaves the elderly either partially or entirely alone late in life. In turn-of-the-20th century America, in the wake of the Gilded Age, 2/3 of United States poorhouse residents were elderly. In India today, a similar situation exists (which Dr. Gawande describes as “straight out of Oliver Twist”).

The moral outrage of these conditions in a fully developed society (in combination with surplus wealth from a now-mature economy) leads to the emergence of social safety net programs like Social Security (1935), Medicare (1965) and the ability for people to die in their homes again. In the U.S., a clear majority of deaths occurred in the home at the turn of the century. Although this figure dropped to 17% by 1980, since cementing our status as a fully Industrialized nation in the 1990s this number has steadily climbed.

The job of any doctor, [Dr.] Bludau later told me, is to… [provide] as much freedom from the ravages of disease as possible and the retention of enough function for active engagement in the world. Most doctors treat disease and figure that the rest will take care of itself. And if it doesn’t… well, that isn’t really a medical problem, is it?

Trying to Age Alone at Home – Alice Hobson

To explore how a society undergoes the shift from Developing to Industrialized, the author relates the story of his own grandmother-in-law, Alice Hobson. Born on a farm in a rural Pennsylvania town, Alice had a quintessential 20th century American life, marrying a civil engineer named Rich, and raising two children in Arlington, VA. Sadly, Rich preceded Alice in death due to a sudden heart attack in 1965. At 56, Alice was a widow.

Alice was a strong, self-sufficient woman. For years after Rich’s death, she lived on her own in the same neighborhood as her children. As the author recalls, “she mowed the lawn and knew how to fix the plumbing”. However, the writing was on the wall. In 1992 at the age of 86, Alice began having falls and experiencing visible confusion. Her family worried: was it really safe for her to live at home anymore?

I asked [Felix Silverstone, the former senior geriatrician at Parker Jewish Institute] whether gerontologists have discerned any particular, reproducible pathway to aging. “No,” he said. “We just fall apart.”

With nothing clearly medically “wrong” with Alice, the family had few options. Alice wished to remain in her own home, but it was clear she was unable to. She despised leisure-focused “retirement communities” like those Del Webb pioneered in the 1960’s. After searching with her son Jim, Alice ultimately chose to use the proceeds of selling her home to secure a spot in Longwood House–a pseudonymous senior-living facility that had private units combined with a Skilled Nursing Facility (SNF) ward for residents who could no longer live on their own.

Unfortunately, when Dr. Gawande visited her a few weeks later, “she [didn’t] feel at all happy or adjusted.” Rather than feeling that Longwood had provided care and amenities for her to continue living, Alice ultimately felt that Longwood had completely replaced her life. “She never got used to being there or accepted it”. After falls in her own living room forced her into the SNF ward of Longwood, Alice became dejected. She remarked to her son Jim, “I’m ready” and passed on quietly during the night.

Decline on Your Own Terms – Dr. Atmaram Gawande

The final section of Being Mortal is devoted to the moving story of the author’s own father, Dr. Atmaram (“Ram”) Gawande. In 2006, after experiencing neck pain and hand numbness that won’t subside, Ram gets an MRI and is presented with startling news. A slow-growing tumor has invaded his spinal canal and is beginning to compress all of the major nerves that control his bodily functions. Consultations with leading neuro-oncology surgeons present Ram with an option: open the spinal canal, remove as much of the tumor as possible, and create space for the tumor to grow without causing total paralysis.

“My father came to his end never having to sacrifice his loyalties or who he was, and for that I am grateful. He was clear about his wishes even for after his death.” – Dr. Atul Gawande, Being Mortal.

The possibility of undergoing such a drastic procedure frightens Ram, who then begings to ask probing questions: “Do you use a microscope? How do you cut through the tumor? How do you cauterize the blood vessels?” The first consultation – at Dr. Gawande’s own institution no less – is with a surgeon who quickly becomes peeved. After deciding that this was not the man to cut him open, Ram visits with a Cleveland Clinic neurosurgeon named Edward Benzel. Dr. Benzel answers all Ram’s questions and then presents an alternative: what if we keep an eye on the situation without surgery? When you decide it’s time to have the surgery, we’ll schedule you right away. Ram and Dr. Gawande are both incredibly relieved, and agree to follow this course of action. A year later, a repeat MRI shows the tumor has grown significantly, but Ram’s quality of life had hardly been impacted at all. No surgery is on the horizon, and life moves on.

But the good run does not continue forever. Although avoiding surgery had allowed Ram to maintain his quality of life, in 2009 his symptoms begin to change. He retires from his practice, but continues to delay surgery. By 2010, Ram struggles to walk, and Dr. Gawande sits him and his wife, Sushila, down for a talk. Using tactics he had learned from palliative care expert Susan Block, he begins:

“I’m worried.” [Atul Began]. “What are your fears if you should become paralyzed?”

“That I will become a burden to your mother and be unable to take care of myself.”

“If you could still eat chocolate ice cream and watch football on television, would that be enough for you?”

“That wouldn’t be good enough for me at all. Being with people and interacting with them is what I care about most. I can’t accept a life of complete physical paralysis, of needing total care.”

“Your advancing quadriplegia will mean twenty-four hour care, a ventilator, and a feeding tube. It sounds like you don’t want that?”

“Never. Let me die instead.”

(Paraphrase)

With this framework in place, Ram finally undergoes the spinal cord decompression surgery. It is a success, and seven hours later, his spinal column had been opened, small bits of the tumor removed, and general decompression performed. Ram would stave off full-blown paralysis.

But not for long. Unfortunately for Ram, oncological specialists press him to take a course of radiation and chemotherapy over the next several months, leading to severe side effects and frustrations (especially for Sushila, Ram’s primary caretaker). Finally resigned to his fate, and understanding that even the state-of-the-art treatments will not extend his expected lifespan beyond 3 years, Ram makes the decision to enlist home hospice care.

Dr. Gawande (being the elitist Bostonian he is), fully expects the Appalachian nurse from hospice to be completely incompetent. Instead, she is concise, direct, and caring. She sets an action plan in place, provides Ram with support to live his final days, and actually improves his quality of life.

Together, the family and caretakers string together good days, good weeks even, but troubles remain. Struggles walking, talking, writing, and even using the bathroom plague Ram. Dr. Gawande comes to Ohio to stay with his father full-time, along with his sister (who is able to introduce her father to her future husband). Finally, Ram’s time comes. The author writes:

[At the end], he asked for the grandchildren. They were not there, so I showed him pictures on my iPad. His eyes went wide, and his smile was huge. He looked at every picture in detail. Then he descended back into unconsciousness… [Finally], we went to him. My mother took his hand. And we listened, each of us silent. No more breaths came.”

Concluding

How do we conclude our lives? What is the “right” answer? The book’s epilogue includes a touching (and funny) tribute to Dr. Gawande’s father, describing how after Ram’s death, the family travels along the Ganges river to spread his cremated ashes, as per Indian tradition:

The Ganges might have been sacred to one of the world’s largest religions, but to me, the doctor, it was more notable as one of the world’s most polluted rivers, thanks in part to all the incompletely cremated bodies that had been thrown into it. Knowing that I’d have to take those little sips of river water, I had looked up the bacterial counts on a web site beforehand and premedicated myself with the appropriate antibiotics. (Even so, I developed a Giardia infection, having forgotten to consider the possibility of parasites.)

But for the rest of us, Dr. Gawande has no single prescription. The path forward it seems is for us to move toward a post-Industrialized state where we can use creative, non-institutional forms of medicine to improve our quality of life in the final years. He cites a study by Dr. Chad Boult, a geriatrician with the University of Minnesota, that found that simply having a team of geriatric nurses and doctors see high-risk patients over the age of 70 resulted in a 25% reduction in disability, 50% reduction in depression and actual cost savings by reducing home health service utilization by 40%. Although mortality rates among the control and treatment groups were equivalent, there can be little doubt this points to the possibility of reducing costs and improving outcomes in tandem. Marching toward the Triple Aim through innovative medical treatments and more compassionate care is as good a solution as any.


Next Time: War Plan Orange by Edward S. Miller

Immigrants: We Get the Job Done

Next time: we go to war! I will be reviewing War Plan Orange by Edward S. Miller, a fantastic treatise on the process of planning a war against Japan in the pre-World War II era. If you liked this, don’t forget to sign up below to get this analysis delivered straight to your inbox!

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