The “End of Life”

End of life is a phrase with several meanings, each of which is a complex set of issues. I have watched my parents age, decline,and finally, pass. Have watched their worlds close in as they aged: world travelers after retirement; later San Diego county; then their town; their house and yard; finally, inside their heads. I see how that goes as one’s interests become more local and more immediate and the rest of the world fades in importance.

I have passed through my own spring and summer and am now in the fall of my life. I don’t see any New Year’s baby yet, and I’m looking for a long Indian Summer, but it will turn cold and I’ll want to be inside by the fire, surrounded by art, with a glass of wine, and a good book (or 50). So, I’m pretty interested in how to keep life being good for as long as possible. I’m through with denial (see my post on Denial for how much and how long I’ve been able to avoid all of this), but I have been thinking about the issues–ugly as they may be–for quite a while.

My Muse is a professional musician, or possibly an angel disguised as a musician. She works for a hospice and plays her harp for patients in their last hours or at most their last days. She is called in to help with pain management when, often, drugs no longer help, or she may help with “terminal agitation” when the reality of the situation has become apparent and denial no longer works. She is very good at this and has helped many patients achieve a graceful passage. This is one of the meanings of end of life, and an area where most of us would agree on what is important. The issue is how to achieve a graceful passage; what must we do and how should we so arrange our lives in advance to make this end is possible.

But, there is another, often much longer, period of life, leading up to those final days and hours that can determine how graceful our passage will be or whether a graceful passage is even possible. The beginning of that period is sometimes difficult to identify. It may begin when others start to feel that they need to check on you frequently, or when they become concerned because you are still driving, or when you begin to need help with activities of daily living. This longer period can also be referred to as the end of life. If you are lucky, it will come on gradually. If you aren’t, it may begin catastrophically with a heart attack or a stroke or a bad fall. If it begins with a catastrophe, you may be left with a life situation you do not like and do not want, but can no longer change. That is why I’m taking up these issues now.

I have just read an excellent new book, Being Mortal: medicine and what matters in the end, by Atul Gawande (Metropolitan Books, 2014), a surgeon from Boston, that leads me to thinking about these issues in greater detail. Another interesting piece that prompts me is Why I Hope to Die at 75, by Ezekiel Emanuel in the September Atlantic. They bid me for different reasons: Gawande because he is objective and lays out the issues so nicely; Emanuel because the pessimistic position he lays out, while carefully argued, is wrong.

I know that it is time for me to be working through the coming decisions, but you may think that you are “too young,” or you may not yet have given up the notion that you are immortal. Or, you might be starting to think about these issues on behalf of your parents because they still think they are immortal. Or you might already have assumed responsibility for your parents’ care and are wondering if there is anything better that can be done for them. How lucky you are in that case to be given the opportunity to take the lessons you learn for this experience and apply them to your own case. Your time is coming, unless, of course, you actually are immortal.

I’m thinking of this as the beginning of a series of posts about aspects of aging, maintaining a high quality of life (whatever that might mean to you), dignity, and control. I invite you to join a conversation about these subjects. What are your thoughts?

 

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6 thoughts on “The “End of Life”

  1. I read Mary Pipher’s Another Country some years ago and got a lot from it. I was thinking about my elders when I read it but could probably stand to read it again. http://www.nytimes.com/books/first/p/pipher-country.html

    I think it’s important to make sure people know what you want, to get it in writing, when still of sound mind and body. I don’t know about you, but have found when people “guess” at what I want or would like, just in general, they tend to get it wrong!

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    • It’s pretty hard to guess what people want, even if you think you know them well. The phrase my Muse and I use about when do do some of these things is “while you can and while you care.” We add the last part because there comes a time when there are plenty of things you can do, but they are no longer interesting. Many, many people leave critical living decisions until too late–past when you no longer care. I think one should decide how they will live the end of their life early enough that it is still possible to make changes if you decided wrong.

      Atul Gewande pointed out that near the end of life, living arrangements are often made by one’s children. The children want safety and security for their parents. The institution wants to make sure they don’t lose anyone, by wandering off, for example (that happened at a nursing home here last year resulting in a silver alert and, I’m sure, a lawsuit). That results in living situations that are more like incarceration than living. Don’t go visit a nursing home for an uplifting experience.

      The only thing my mother ever said about how we cared for her was “don’t put me in a nursing home.” She said it more than once although we never mentioned that or even thought about it. Obviously, she did.

      Most elders are not interested primarily in safety and security. They are more interested in maintaining as much of their present life as they can for as long as possible. They will be willing to give up some things, but not others. To know what those things are, you have to ask them. That’s a hard conversation to get started because death is lurking in the background. It’s hard, but you have to do it.

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  2. I love this, and must follow you. But no commentary now, on a train and on an iPhone. (Keys too small.) Later. Like MacArthur (if you remember), I shall return. Must say, though: “While you can, and while you care” is key…

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  3. I remember MacArthur. His return is the first TV show I have any memory of watching (maybe it was because we got out of school to go home and watch). I’ll look forward to seeing what you have to say.

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