For the last year and a half, we have worn masks, washed our hands, stayed six feet apart, even washed our groceries and peeled off our clothes after being out in the world, jumped in the shower and put our clothes in the washer. All of this to avoid Covid, but it may have occurred to you also to think about what might happen if you had Covid. You may have thought about whether you wanted to be on a respirator or take an experimental drug. You might have considered whether you would rush to get a vaccination or wait to see what happens to other people who got it before you made an appointment, but I bet you didn’t write it down. Death has been a constant companion—in the news, in our neighborhoods, our hospitals, and on our minds. Although the human brain has myriad ways of denying our own mortality, it was hard to completely ignore the fact that we could catch Covid 19 and die alone, lying face down, in some Quonset hut built to handle overflow patients.
Most of us got through it without getting sick, although if you are like most people, you thought you might have the virus every time your nose ran, or you coughed with allergies or got a headache. So, maybe this is a good time to think about what you would do if you were extremely ill and unable to make decisions for yourself. But let’s start slow. Rather than dive into details about heroic measures, legal forms, and the side effects of life-saving procedures, we can start by considering what is important to us in life. What does it mean to have a “good” quality of life?
Comfortable in the context of a terminal illness means that you are not experiencing pain you can’t handle (see my article on palliative care (see www.dyingwithwisdom.com/palliative-care). There is no reason why anyone should suffer unnecessarily in the end stage of life. Pain medication is readily available through hospice and most people fear dying more than they do death because they fear the pain and immobility associated with the end stage of life. So, let’s assume that you or your loved one will not have to struggle with unbearable pain.
Given that you are reasonably comfortable, what more does enjoying everyday life mean to you? This is the most important question you can ask yourself as you embark on the project of writing advanced directives. If you were diagnosed with a terminal illness and had only a few months to live, what functions and activities would remain important enough to you to provide a decent quality of life, even when you are dying. I remember that the vet had such a list when my dog was dying. Does he still enjoy his food? Does he like to be petted and groomed? Is he able to walk around? It was helpful to have that list!
What’s on your list? If you couldn’t get outside to enjoy the garden or if you couldn’t sit in your favorite chair and watch the TV would life still seem worthwhile? If you were not aware of what was going on around you and couldn’t respond to it, would you want to go on? How long? If you couldn’t dress yourself or get to the bathroom on your own? If you couldn’t enjoy fooand drink? Start with an idea of what makes life work for you.
At Hospice of Santa Barbara, volunteers were taken through an exercise that might make sense to try at home. Take a set of six post-it notes. On each note, write down the name , some everyday activity that you really enjoy. Then, one at a time, remove each post it, one after the other beginning withs with the activity easiest to give up. You might be surprised how difficult this becomes. At the end of the exercise, I was left with a card that read “the ability to communicate.” Whether by voice, by writing, or by shifting my eyes around, I need to be able to connect. If I couldn’t do that anymore, I believe I’d be ready to go. For some people, just being able to get outside and enjoy the garden or be pushed along the boardwalk might be enough—no need to talk about it. For others, just enjoying a favorite movie on TV could do.
For me, then, it’s also important that I be conscious at least part of the time. So that’s how we get from quality of life to Advanced Directives.
There are actually several scales that measure Quality of Life. The Wisconsin Quality of Life Index The Wisconsin Quality of Life Index: a multidimensional model for measuring quality of life – PubMed (nih.gov) comprised of 9 scales that cover life satisfaction, psychological and social well-being, financial security, and several aspects of physical health. It also includes the patient’s goals. So, what we are talking about here are that final dimension: The patient’s own goals. It’s not about how satisfied you are with your life in general. You could have a lot of regrets and still enjoy everyday activities. Given what you know of yourself, what would be the most important functions, activities, pleasures from day to day.
I have a window seat in my front room that looks out, through a huge arched window at the butterfly garden I planted this Spring. If I could sit in the window with my dog, I could be pretty happy. If people came by and I could greet them, that would be super. I do like food and a nice glass of red wine. That’s enough. I would even give up the wine in a pinch. I can’t imagine a decent life without connections. It might be different for each of us, but once you know what pleasure and abilities are central to the quality of your life, it will be a lot easier to get through the rest of the specifics we will discuss in the rest of this series.
NEXT: ADVANCED DIRECTIVES AND RESUSITATION