The subject is end-of-life. But this isn’t a book you suggest for your friends or family members that are exclusively experiencing the difficult decisions that come with end-of-life care. The book is appropriate for all adults—young, middle, or elderly. Gawande sheds light on the deeper meaning of life by example of how we treat patients in America at the end of their lives. Although the topic is end-of-life, it manages to spark an internal discussion within you about starting to live life. And in that respect, the book speaks to us all. “What fears do I have about aging? How should I handle my gradual loss of autonomy as I age? What makes life worth living? And how do I keep it worth living in old age? What should guide my end-of-life decisions? How can these questions and answers better the health care system?” These are questions we should be discussing now and in 10 years and always for our friends, for our family, and for ourselves.
Discussion and knowledge should guide these end-of-life decisions. What priorities do you have at the end of life? Make sure to share them with your doctor and loved ones. “I just want to be able to enjoy ice cream by myself.” It means physical movement should not be sacrificed. And family members can then use this information to guide their decisions when speaking to the doctor. This seems right to me, a system in which the patient can enjoy the worthy things in life up until death.
I can’t help but think about the exceptions. A slightly ill but able patient discovering they have a terminal disease while surrounded by family seems to be the most ideal and common situation. Ask what makes their life worth living and then obey their wishes. But what do we do in situations alternative to this? What if the patient is too ill to radiate their wishes to others? What if the patient doesn’t have family? What if the patient is content with stopping the fight and a family member is not? How do consulting doctors with differing end-of-life opinions speak to and treat the same patient? What happens when the patient has dementia or a mental illness or a mental disability? What if the wrong diagnosis is made and the patient’s condition is not terminal but rather treatable? What if a patient’s desires are impractical? How does a doctor agree to a patient’s wishes without fear of lawsuits?
These are just some of the hypothetical but possible situations I could think of that I know would make the decisions very difficult. Although it might give us some relief to think that for every patient we could solve the end-of-life care problem by asking what their desires are, what’s worth living for, and what they’re willing to sacrifice for a prolonged life, it’s not that simple. I do think the method is a drastic and beneficial step forward in providing people with the best-suited care at the end-of-life, but it doesn’t give us an answer to every person’s unique situation.
Dr. Gawande’s “Being Mortal” may, at the surface, look like a doctor’s account of issues with the country’s end of life care system while citing examples, research and case studies, but it turns out the topic inherently goes deeper and questions our meaning of life. As he discusses in his book and in the talks he gives, Gawande notes that these deeper conversations about life and our desires from it is hard to avoid in this conversation about taking proper care of our elderly. Logically, in order to take care of someone (especially at the end of life), it seems proper that you and they know what’s worth fighting for, what makes them the most content, what desires do they have, and what’s practical.
As you read the book, you put yourself into the case studies Gawande writes about. You question what actions you would or wouldn’t have taken as doctor or patient or family member. And you end up questioning, “What makes life worth living? What will I want most at the end of my life? How do I keep life worth living even at an old age?” As a 21 year old I don’t think I could say that I know the answers to these questions. Or at least if I do, I’m sure my answers would change one year from now or even a month. I haven’t found my life partner, I’ve not married yet, or found a career, or even bought my own house. As far as I’m concerned, I still feel like an inexperienced kid. And I don’t think I’m alone. Knowing what’s worth living for is tough. I can’t imagine I’d know until I was at a point close to losing it. It makes the discussion about how we handle end of life care difficult but necessary. Just as much as we’d like to propose our meaning for life, we also need to be listening to others.
I think it’s important to note that doctors and health professionals are not solely at fault if, for example, they suggest too many surgeries or prescribe more pills. There’s a culture here in the United States that sorely equates drastic medical action leads to drastically better health. Perhaps we’ve become addicted to quick effortless solutions. According to the IMS Institute for Healthcare Informatics, the United States filled a record-breaking 4.3 billion prescriptions in 2014.
It makes sense. Being in a state of disease is certainly something you’d like a professional to get rid of as fast and soon as possible. Because we’ve seen what power drugs and risky surgeries can accomplish, we only want the best for ourselves. We crave action. Unfortunately, hard medical action isn’t always necessary. A lot of times it’s best to wait it out and see. Trying to tell a patient that their drive over to the doctor’s office, their wait in the lobby, and their copay fee was so that they can be told to wait i tout longer, get some rest, and call again if anything happens. It can be frustrating as a patient. Some demand some kind of pill or action. “There needs to be something done.” To appease a now sick and angry patient, a doctor may feel inclined to prescribe an antibiotic or suggest they see a specialist that may suggest surgery. As a pre-med student often shadowing and volunteering with doctors at the hospital, I witness doctors expressing the common frustration of prescribing inaction when patients want a fight.
This may be one small detail in the overall need to “fix” the system. I do think it is an important issue that revolves around pharmaceuticals, economy, and the culture of our health expectations.
There’s a reason many of us cherish our independence in the United States. I won’t start listing them now, but I do think we are privileged to have a “I can do it” culture here. I don’t see this as a direct problem that leaves each one of us paralyzed when it’s time to depend on others. Some of the elderly thrive in independence. It would seem unjust to insist they find dependency acceptable. Instead, a solution to better handle a person’s shift into a life without autonomy is to provide guidance and options. Ask, “How far are you willing to go?” Develop a system that may start with a doctor starting the conversation. A more experienced counselor then travels with on their journey in finding the relief of some dependency. Perhaps we can call this counselor an “autonomy counselor.” The autonomy counselor’s equipped with the knowledge of a person’s desires and permissions for what they’re most comfortable to lose their autonomy for. They’re able to list the options, make suggestions, and provide reassurance. I think the transition is better handled by having a non-family professional talk and explain and listen to someone that may be considering an assisted living lifestyle. Asking for an autonomy counselor need not be seen as something shameful or required. As a team, the counselor, person, and family work to find empowerment and a desirable lifestyle.
I turned 21 two months ago. What business is it of mine to fear age? I should, like a caged circus elephant that escapes, thrash around my newly obtained freedoms. Or instead drive to and then hike the Grand Canyon early in the morning and end the night in Vegas talking for hours to a stranger I’ve now decided to call a friend. Perhaps I’d rather finish a book at home in-between the episodes of the first season of HBO’s Game of Thrones? People expect me to fear the age of the expired milk I keep forgetting to throw away, not my age.
After reading Atul Gawande’s "Being Mortal", I see that 20-somethings need to join the difficult conversation about age and end-of-life care.
Every year on his birthday my dad jokingly tells my brother and I that he’s turning 45. He hides his grey and white hairs with black dye. And by doing so he seeks agelessness. Flip on the TV and listen to any news station or gossip channel or any big-time talent show. A person’s admirable or horrendous accomplishments on television are often first defined by name and age. And each program’s intermissions are filled with commercials advertising youth—feeling young, looking young. I don’t acknowledge these examples to say there’s something wrong with wanting to be younger. Rather, it demonstrates that age has a great importance in our lives. Perhaps the fear of aging is rooted in our anxiety of losing the comfort of our young life.
I think kids my age understand the fear of aging. But we don’t talk about it. The world beams cues to us that we’ve got it good. Don’t squander it. “Gradually you’re ability to effortlessly do what you want will vanish. When it does, you’ll be happy you spent your youth seeking the joys of life. If you don’t, you’ll regret it when you’re older and no longer able. That’s just life.”
It was Gawande’s book that helped me reach an alternative view of age. The thought that the joys of life somehow end years before death bothers me. Yes, there may be some truth to the fact that at some point I maybe physically and/or mentally unable to pursue the greatest joys of my life. But now I see a problem with having a belief that there will be a time of my life where I will have to live the end of my days without joy, happiness and some of my desirable freedoms. Furthermore, it seems more troubling that our culture, with the best intentions, advocates for the sacrifice of life’s joys for the unlikely hope of, as Gawande puts it, securing the winning lottery ticket.