The Right to Make Choices: In Living and in Dying

Understanding Grief / Understanding Grief : Eleanor Haley

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My little brother is leaving for South Sudan this afternoon. Those of you who pay attention to the news know this isn't exactly the safest place to be right now. His departure was swift and has left a fraction of my large nuclear family in various stages of worry and anxiety. Although all are supportive, I suppose some would prefer he found employment in, say, Tampa.

This whole ordeal sparked a debate between my husband and I about whether people should avoid doing things simply because they make their loved ones uncomfortable; a discussion that was punctuated by a phone call from my little brother to discuss “his wishes” in the event that something were to happen to him while he’s away.

Fortunately his wishes are simple—I guess that’s one good thing about being young and traveling light—but, just the same, he waffled on a few things out of concern they might upset the family. I said:

These are your wishes. No one is going to take issue with them. No one would discount them!”

But then I took a second to ponder whether this was actually true. In his case, I feel fairly sure it is. But I can’t ignore the fact that, in the 7 years I’ve worked in death and dying, I have seen a good number of end-of-life wishes trampled on—from DNRs, to organ donation, to funeral arrangements, to the disposal of belongings.

Sometimes people just find themselves unable or unwilling to comply with what their loved one wanted. Sometimes it’s due to circumstance; sometimes they just don’t care; and sometimes it’s the subtle justification that their deviation is actually what the individual would have wanted. It all just makes you want to step back and say: Respect people's choices! Respect the way individuals want to live. Respect they way they want to die, yes even if you don’t like it. And yes, I recognize some choices are definitively bad.

Recently, Bill Keller wrote an op-ed piece for the New York Times called 'Heroic Measures'. In this piece, he contrasted the way Lisa Boncheck Adams has publicly waged war with breast cancer via her blog and Twitter feed with the way his father-in-law died in the peaceful and nurturing hands of his palliative care team. I first heard about this piece in the context of angry Tweets from those who interpreted Keller’s opinions as condemning individuals who choose to leave this world swinging and shouting. Then, instead of going to the source, I read this article. So by the time I dove into Keller's actual piece, I was fully prepared to feel outrage.

I’m afraid I’m missing some obvious yet over my head sub-text here and thus my conclusions will brand me dim but... I was not at all enraged and I walked away a little puzzled as to what all the fuss has been about. Aside from the odd decision to contrast the way his father-in-law died to someone who seems to identify herself as living with cancer not dying, I thought Keller’s piece made sense.  

His ultimate point was not to criticize Lisa Boncheck Adams for aggressively treating her cancer and talking about it, but to point out that those individuals who lay down their swords and accept death are just as brave—the concern being that, by not giving each approach its due respect, we are setting up those who face similar choices (and those who love them, influence them, and forever live with said choices) to feel like quitters when they don’t choose to continue treatment in the face of grim prognosis.

The way I understood it, Keller's message seems pretty much in-line with growing sentiment that individuals facing terminal illness should be given all their options and be encouraged to choose how they want to live and die; Home, hospital, hospice, or treatment, all choices are okay and worthy of our respect.

Personally I love that Lisa Boncheck Adams is inspiring, informing, and comforting others by talking about her experiences. Ultimately her choices are none of my business, but I respect them and admire them nonetheless. She understands her life and her illness and she (I imagine together with those who love her) is making the decisions that are right for her.  

There is a giant spectrum of options when it comes to dealing with illness, death, and grief and all are okay. Each individual experience is different and, based on these experiences, each of us must make the decisions that are right for us in living and in dying. Whether or not our loved ones like our choices is irrelevant; we just have to hope they love us enough to respect, accept, and see them through.

What do you think? Comment below.

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5 Comments on "The Right to Make Choices: In Living and in Dying"

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  1. Jolene Thibedeau Boyd  January 26, 2014 at 6:09 pm Reply

    Thanks, Eleanor. 🙂 Most certainly, I will check back!

  2. Eleanor  January 26, 2014 at 4:45 pm Reply

    Jolene, I could not have put this so well if I had tried (hey wait, I did try!) =). Your and your mother’s story is such a perfect example of a family’s struggle to make and respect the choices that are ‘right’ for each individual. I see it in the way my mother dealt with her illness and the choices she made, and in different conversations I’ve since had with my siblings about whether or not they would choose treatment in the same situation. Some say yes, because it gave her a few extra months, I say no because I worry it increased her pain. I think it’s important for us to think about these things and discuss and to continue the conversation because, let’s be honest, minds change when faced with certain realities. I’m sure all you wanted was to do right by your mother and it was probably so hard to accept that meant saying “okay, let’s stop going to treatment.” I honestly cannot imagine anything braver for either of you. I’m so sorry for your mother’s death and it warms my heart to know we’ve been even the slightest help. Check back in soon =)

  3. Jolene Thibedeau Boyd  January 26, 2014 at 2:29 pm Reply

    Thanks for your thoughts on this “debate”, and for all the links to the related blogs, articles, etc….I was completely oblivious to all. I think I side with you on this issue. As a daughter who watched and tried to support her mother through metastatic breast cancer in 2001 (after she had “successfully” beat it a year before that), I have my own little version of this story to tell…after typing many words here, through fresh tears, I have deleted most of the story in an attempt to keep this brief, for the sake of commentary. I will just say that I found great comfort in the words of my mom’s oncologist, with whom I had spoken after the first, and stressful and tear-filled, episode of trying to get my mom to go to an appointment for her brain radiation that she clearly did NOT want to attend. Mom seemed kind of confused and not really herself by then (we assumed because of the tumors in her brain), but the doc said to me in regard to my mom’s resistance, in a way that was both refreshingly matter-of-fact, yet somehow more tender than he probably even intended, that he truly believed that even though it may have seemed that she might not really understand the implications of her behavior, somewhere deep down, she still knew what she wanted…and didn’t want. The next day, shortly before the time to leave for the next radiation appt, I told me mom that I was not going to force her to have radiation if she didn’t want it, but that I really wished she could just tell me if she didn’t want it. And she looked at me with tears, and said “I don’t want to go.” And that was that. Anyway, I here’s my take on the whole thing. We humans need to be kind to each other. And respect the choices each of us make, even when we don’t agree with them or would choose differently ourselves. We all have different experiences, values, fears, beliefs, and so on…and we are all uniquely entitled to them all, and to make the decisions we choose to make. I believe there is no need for any judgments, only acceptance, or at least tolerance. Life is hard. Death is even harder, despite its inevitably. So I applaud Lisa. And I applaud Bill’s father-in-law. She is doing what she needs to do. And he did what he needed to do. There is no right or wrong here, in my opinion, so the “controversy” is beyond me, too, Eleanor. If you’re “dim” for not getting the outrage, then so am I. Except I don’t think we are, just for the record.

    Your point is the thread that ties both of these perspectives together…respect. Respect of differences, of choices, especially those really hard choices. Even if we think we would never make those same choices, or are in the throes of fighting a battle when others have chosen a different path. We are all still uniquely entitled to at least that much. Thank you for this post, and thanks for WYG…it is helping me work through some longstanding AND freshly experienced grief of my own.

  4. Eleanor  January 23, 2014 at 12:38 pm Reply

    Ahhhh thank you so much!

  5. Ruth  January 23, 2014 at 9:35 am Reply

    Excellent article. Thanks for such a great blog (-:

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