34 | Heart: A History by Sandeep Jauhar

First off, I love the cover art for this book– how simplistic the drawing it and the color scheme. I know they say not to judge a book by its cover but that’s probably what drew me! Heart: A History takes the reader from what philosophers thought what the heart might be all the way to modern cardiology and how the psycho-social aspects of our lives affect our hearts. The first half of the book was fairly dry for me. Yes, I know ancient philosophers thought the heart was the center of emotions, blah blah blah. The book started to get better when Jauhar began to describe how modern medicine involved a lot of wild, seemingly unregulated experimentation. Many dedicated surgeons literally used their own bodies as a canvas to attempt revolutionary therapies that hadn’t been tested before. It looks guts, courage, incredible risk to get to where modern medicine is.

Jauhar highlights the sensitive nature of the heart early on; it’s ironic, he says, that the heart literally keeps us alive yet can take our life away in an instant. The electrical current that keeps the heart beating and everything else working can just stop, like that. Sometimes there’s no forewarning. Sometimes there’s no genetic propensity. But a freak traumatic event or a devastating emotional break can trigger the heart to do something completely out of its norm, risking your life.

I agree with other people who have read the book that Jauhar could have used less technical detail when describing various experiments and studies on the heart– simply because I didn’t understand when it was being explained, which means I definitely don’t understand or recall now. The stories which he told, for example, being at ground zero as a young cardiology doctor were colorful and illustrative. Given that I’m not too much of a science person, I enjoyed the narrative pieces much more than I did the Latin terms and biology textbook-ness of some of the chapters but nevertheless I would say that his book truly was a history of the heart.

9 | Death’s Acre: Inside the Legendary Forensic Lab the Body Farm Where the Dead Do Tell Tales by Dr. Bill Bass and Jon Jefferson

“Anthropologists and insects can reveal the truth about a crime, but they can’t force the wheels of bureaucracy to turn, and they can’t guarantee that justice will be done. All they can do is serve as a voice for victims, and hope that voice is heard.”

This book is a fascinating read– a much more informative read than Mary H. Manheim’s The Bone Lady and one that reads more seriously and with more gravity than Mary Roach’s Stiff. Mostly because Manheim writes about her career in before the 1990s, before the advent of DNA technologies while Bass is writing about his career which spanned the 1940s until the 2000s. Intertwined with case reviews of some of the biggest cases he has ever worked on and accomplishments as the department head of Anthropology at the University of Tennessee (UT) at Knoxville, Bass writes about his personal life, the deaths of his first and second wives to cancers and how he threw himself into his work to seek solace.

I’ve always wondered why people pursue such professions– homicide investigators, coroners, forensic entomologists/anthropologists/etc. It’s because they believe in a greater mission and are able to look past the literal-ness of their work. By solving crimes, they are keeping their communities safer, pioneering the use of new scientific methods and testing and cataloguing information to help solve other cases. There’s no shortage of colorful description about how Bass’ colleague, a leading fingerprint expert, asks Bass to cut off a hand of a murdered prostitute’s corpse, or how Bass himself reviews hundreds of crime scene photos of three dead and bloated bodies of a man, his wife, and their four year old daughter, left to rot in a mountain cabin for a month, as he looks for maggot pupae in order to determine the time of death. The reality of the job is sickening yet incredible- it is because of the diligence and dedication that people like Bass have to their jobs that crimes are solved, criminals are successfully prosecuted and victims receive some justice.

One of the most remarkable parts of Bass’ legacy is the creation of the Body Farm, an anthropological research facility at UT literally borne out of genuine curiosity with how to answer questions like: how long does a body take to decay outside, in the dead of winter? In the heat of the summer? What about in water? What kinds of residue is left in the soil? How can you tell if a body has been moved after the death? However macabre these questions are, there’s no doubt how critically forensic evidence needs to be investigated in order to shed light on the scene, without the murderer or the victim saying what happened. The level of scientific expertise developed due to the research efforts at the Body Farm is amazing, so much so that federal, state and local law enforcement agencies have consulted with Bass and his proteges on hundreds of cases. Bass really exemplifies what it means to bridge his academic work as a professor of anthropology to the “real world,” frequently going to crime scenes to collect and examine evidence. He doesn’t skimp on the explaining the science (in layman terms) of what happens when bodies are burned– as the body looses water, muscles and tendons clamp up and the body begins to curl. By examining the structure, color and density of the bone, one can tell how hot the fire was, the position of the body as it burned, but it can also reveal, though burned, if there were peri or post mortem wounds to the bone– perhaps a gunshot entry/exit wound or blade mark.

To me, crime fiction in books and television seems perverse in a way– many times what happens in fiction is inspired by something happening in real life. “Good” crime show producers and writers consult real world experts- forensics scientists, FBI agents, police, in order to make something as “real” and “believable” as possible. I personally don’t read or watch anything to do with crime fiction for the reason I don’t think someone’s lived and post-mortem experience should be fictionalized to create a sensational story, with fake blood and the like. But reading Bass’ book and learning about the very “down to earth” research conducted at the Body Farm seems less and almost not at all disturbing as the research is only necessitated because of real crime.

4 | Being Mortal: Medicine and What Matters in the End by Atul Gawande

“The problem with medicine and the institutions it has spawned for the care of the sick and the old is not that they have had an incorrect view of what makes life significant. The problem is that they have had almost no view at all. Medicine’s focus is narrow. Medical professionals concentrate on repair of health, not sustenance of the soul. Yet– and this is the painful paradox– we have decided that they should be the ones who largely define how we live in our waning days.”

Being Mortal

I first came across the idea of “quality of life” when watching the French movie The Intouchables (2011), a story of a wealthy quadriplegic man named Philippe, who instead of hiring a live-in caregiver who is medically trained and qualified, hires a young black man, Driss, from the projects who has zero experience or interest in the job. Philippe’s friends become concerned about this decision and confront him saying “…these street guys have no pity…”, to which Philippe replies: “That’s what I want.” Philippe and Driss strike a friendship that allows Philippe to feel like he’s living; the two take joyrides through the streets of Paris in Philippe’s Maserati, go paragliding in the Alps and Driss even throws snowballs at Philippe and jokes: “Don’t be so lazy. You have to throw some back” as Philippe laughs with joy. Later, when Driss leaves the job due to familial duties, Philippe becomes deeply depressed and withdrawn as his new caregivers treat him like a retarded child, incapable of any mental capacities. There is a happy ending though, when Driss returns, allowing Philippe to live a life without constant pity from those closest to him.

There have been many highly publicized debates about a subject related to this idea of “quality of life” and what happens when it is subject to imminent compromise. For example, there are a number of states including Oregon and Washington that have passed laws legalizing assisted suicide or assisted death for those with terminal illnesses which cause significant pain and loss of quality of life. I remember the case of Brittany Maynard, a 29 year old California woman who was suddenly diagnosed with a terminal brain cancer. Because California did not have any laws to allow her to make that decision, she and her family had to move to Oregon in order to take advantage of the “Death with Dignity” law. She became the figurehead of the national debate; at the time of her death, only three states in the U.S. legalized assisted death laws, but to date, seven states have passed the legislation. Maynard describes why she made the choice to pass away this way. In this way, she is in control. When she feels the time is right and before the pain becomes too great to bear, she will be able to decide when to pass. In an interview after her passing in 2014, Maynard’s husband talks about of Maynard’s fear of suddenly (and inevitably) losing her mental capacity during a seizure or stroke (which results in the loss of speech), to which point she cannot self-administer the medication. That that point, she loses complete control over her own body, her mind engulfed in fear and the loss of the ability to communicate her desires. Death with Dignity allows her to pass on her own terms in an environment she chooses, with the people she chooses to be around her.

The word “dignity” has been thrown around– some feel that the loss of bodily functions such as eating or relieving oneself, such that they need 24/7 oversight might cause them to live a life without dignity. Other feel the life with pain or life constrained to a bed or wheelchair is the limit. Whatever the case, the inevitable fact Gawande argues many people do not wish to accept though they know is that we are mortal. We live for a finite period of time, then we will die. While for a few, death will come quickly and unexpectedly, perhaps in a tragic accident, for most, there is a gradual decline of loss of physical and/or mental capacities. This is a frightening thought, I know for me that is. Older people tend to have trouble with hearing, seeing, walking, sleeping, bending down… the list goes on and on. Not to mention loss of appetite, memory loss, motor function, and secondary effects which lead to loss of independence. Many elderly gradually lose the ability to drive (apparently 3x more likely to cause an accident than a newly licensed teenager), grocery shop, cook, do housework and take care of oneself. I cannot imagine myself going through this process, it must be terrifying to be cognitively sound yet feel as if your body is giving out. Thus, Gawande says, we have turned to medical interventions to prolong the period in which we can delay the process of aging or mitigate the effects. If you have hearing loss, you get hearing aids. If you have this issue, you get that medicine. If the side effects are too much, you get another medication to help with that. With major illnesses and diseases, it’s similar. You take blood thinners to reduce the chance of blood clots, you remove tumors as physicians recommend, you take all the preventative and proactive measures you can.

Gawande shares the story of many who do not realize their diagnosis is a death sentence. A young woman who is diagnosed with a terminal metastatic cancer just days before her due date and her family, continue to push to her doctor to “do his job” and come up with possible avenues of treatment, completely neglecting the reality of her situation. Not because she and her family aren’t listening, but more so due to the fact her doctor is not telling her ‘you will die from this, in a matter of months.’ Gawande writes that the majority of doctors significantly overestimate the time their terminally ill patients have. Doctors aren’t trained social workers, there are social workers that work with terminally ill patients for a reason, but the delivery of “the news” is not always clear. Doctors aren’t at fault though, because who wants to let the young 36 week pregnant lady know she will die in the next few weeks and that any surgery will be pointless as the cancer has already spread to vital organs? Patients and their families aren’t always receptive to the full array of possibilities, many putting blind faith in science which is not as advanced as they believe it to be. This is the paradox outlined in the quote at the beginning of this post, that patients feel they have no choice but to resign and leave the fate of their life in the hands of their physicians who want no blood on their hands. So patients try everything: surgery, chemotherapy, experimental therapies and treatments. Gawande argues that this is a form of abuse, as some patients’ bodies will actually decline due to the applications of these procedures, the opposite of what they believe it might do.

This is a recent cultural shift, Gawande writes, as just a few decades ago, the majority of deaths occurred at one’s home. Now, most deaths occur at the hospital, surrounded by beeping machinery and unfamiliar faces in a clinical, sterilized setting. What is so great about this prospect? He writes: “At root, the debate is about what mistakes we fear most– the mistake of prolonging suffering or the mistake of shortening value life.” There is a middle ground though, which is completely subjective, yet unrecognized by federal law. Brittany Maynard found it, but that required intensive research, reflection and resources for her to be able to move to another state and have the support of medical teams to respect her decision. She passed before the suffering became too great for her to bear yet at a point she felt her life was well lived. I have great respect for her, her husband and family for pioneering the national debate around this topic.

Not only does aging place a burden on the individual experiencing the process, but it also deeply affects that individual’s children and their families. Though a common familial structure and living arrangement in other countries, multi-generational living is not common in the U.S. as specific industries and educational opportunities are concentrated in particular areas, requiring people in the workforce to become geographically mobile. Moreover, the expanded housing market, ideals of individualism and “coming of age” and other socio-cultural factors have encouraged young people to live independently. So until older people experience issues to the point they cannot care for themselves, they do live on their own, but then they are faced with the choice between (a) continue living on one’s own and risk serious injury (falling, heart attack) and no one being around to help them seek emergency medical attention, (b) moving in with children (if that is an option), (c) nursing home, (d) assisted living… these choices of course vary depending on one’s finances, familial structure and geography. Gawande considers a multiplicity of cases. His wife’s grandmother Alice Hobson who until has a serious fall, lives independently as an 80+ year old. Alice’s son and daughter-in-law becoming increasingly concerned, eventually convincing her to move into assisted-living. She becomes withdrawn and depressed like Philippe does after Driss leaves, as she is subject to the facilities’ strict regiment: when to eat, what to eat, when to wake/sleep and what activities are available. She eventually dies. Another man named Lou lives independently as a 94 year old. Due to his daughter’s concerns regarding Lou’s safety, he unwillingly moves into her home where tensions arise as Shelley is burdened with caring for her own children and her father, who has many medical appointments, therapists visits, health issues, and idiosyncrasies she finds difficult to deal with. She reaches a breaking point, confessing to her father who hard it has been on her. He moves into a type of assisted living that values patients’ sense of independence. For example, though he is prone to falling and isn’t able to balance well, he feels undignified confined to a wheelchair. Thus, under a aide’s watch, he allowed to walk using a walker when and where he pleases. He decides when he wants to wake up and go to bed, how he wants to spend his time and how he wants to decorate his room. Lou’s life does end, but he is happy, having never lost his sense of dignity. A life well lived. Gawande says that we do not realize how one’s state of mind feeds into one’s body: a happy person lives a longer life. And it doesn’t take much for Lou to feel happy.

The irony is that even if you know what’s going to happen, it doesn’t make it any easier to accept. However, Gawande argues that the earlier on people confront the difficult questions around the terms in which they wish to live and die, the smoother it will be and the less anguish and pain will be felt. In the case of La Crosse, Wisconsin, elderly residents have unusually low end-of-life hospital costs, during the last six months they spend half as any days in the hospital as the national average, there’s no sign that doctors and/or patients are halting care prematurely, and their life expectancy outpaces the national mean by a year. How? Gawande writes that in 1991 local medical leaders instituted a campaign to get both medical professionals and patients to discuss end-of-life wishes. Some questions include: Do you want to be resuscitated if your heart stops? Do you want aggressive treatments such as intubation and mechanical ventilation? Do you want tube or intravenous feeding if you can’t eat on your own? Though uncomfortable to think about let alone discuss with tohers, the advanced directive written allowed patients, their families, and caregivers to find a certain peace, as the patients’ wishes were clearly spelled out.

Admittedly I am fearful of death. I am afraid of the gradual decline of my capacities, the pain and the heartache it will cause my loved ones. However, when you realize the fear around death is a cultural mindset, it feels somewhat more liberating. Several years ago, I watched a TED Talk by an artist, proposing the idea of pledging one’s body after death back to the environment. After one passes, the body will be placed in a mushroom-spore infused suit, eventually helping the body to decompose and feed the soil. She isn’t proposing to eliminate ritual, rather she wishes to reimagine the links between life and death. It is natural for living organisms to die, their bodies feeding others as the cycle of life is sustained. To participate of course, while alive, one must make this pledge, but it’s a fascinating way to conceptualize death and what happens after. Since I watched her speak, I am committed to mushroom suit idea. Are you?