Quality of life (or QOL) doesn’t seem like it should be a difficult phrase to understand. In fact, given how it’s thrown around practically all the time when talking about end-of-life, you’d think quality of life is the most basic concept in healthcare and advance care planning. So, as an intern for a healthcare planning startup, when I was given the responsibility of writing an article explaining quality of life to patients, I thought it would be pretty simple.
It came as a shock to me when I began outlining and was immediately stuck on the most rudimentary question — what does quality of life even mean?
Meet the Author: Stuti Upadhyay is a student at UC Berkeley and an intern extraordinaire at Koda Health!
And after an exhaustive literature google search, an examination of white papers and peer-reviewed articles, conversations with end-of-life experts, clinicians, and family members, my answer remains elusive. The beauty of QOL is that it can mean practically anything — no two people will have the same definition. My standard for an acceptable QOL reflects my individual preferences, values, experiences, and goals. I choose what defines a high QOL for myself, so the only real way to distill quality of life is by having meaningful conversations.
To try this out myself, I asked my parents and grandparents about QOL, and I learned a lot from a relatively short conversation. My mom, who has always been one of the strong-willed and bold people I know, valued independence. To her, living a life reliant on anything but herself (whether it be machines or other people) was not an adequate quality of life. On the other hand, my dad, who is incredibly good with kids and always puts family first, defines a high quality of life as being able to spend quality time with his family. Because I’ve had these conversations with my parents (and plan on continuing them in the future), in the case of an emergency, I will be better prepared to make healthcare decisions that actually represent their wishes.
The importance of this conversation can not be overstated — even if we think we know everything about our parents, next of kin make the decision their loved one would have wanted less than half the time.
That being said, these conversations are not easy. When I tried to ask my grandparents about what QOL means to them in our mother tongue Gujurati, it became really difficult for me to communicate exactly what I was asking, especially because QOL is nuanced. Many people struggle with communication barriers when trying to approach QOL, whether it be differences in language, age, socioeconomic status, or anything else.
And this is natural. QOL is a loaded topic, and it’s not always easy to have candid conversations about it. To make things easier, palliative care physicians and experts in the field recommend simply asking yourself or loved ones, “what does a good day look like for you?” Think about the things that make life worth living, and gradually bring in scenarios that could compromise this so you can think about your preferences. It’s also important to remember that a good day can span far beyond physical health, and incorporate mental health, spiritual well-being, and social connectedness.
Answering this simple question can go a long way, especially when approaching healthcare or end-of-life planning. As technology has advanced, the dying process has become elongated and the use of aggressive, life-sustaining treatments has increased. To make matters worse, doctors are rarely taught and rarely have time to fully understand patient values. When 80% of Americans prefer to pass at home, and 60% later die in the hospital, it’s imperative that patients take responsibility for answering QOL questions so their treatment can be adequately aligned.
If you’re struggling with the “quality of life” concept – know that you’re not alone.
It’s tough! But understanding what QOL means to you and communicating that to your loved ones can help you make decisions that give you control over your life and prioritize your happiness. Research has proven that identifying end-of-life care choices and plans can greatly increase QOL during end-of-life, so starting to have conversations, even simple ones, is extremely important. On a personal level, talking to my family about QOL has made me feel more secure: I feel better equipped to help them get the healthcare treatment they desire and deserve.
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