“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 Later, when Driss leaves the job due to familial duties, Philippe becomes deeply depressed and withdrawn as his new caregivers treat him like a retarded child, incapable of any mental capacities.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?