End of Life Wishes and Conversations

Coping with Grief Coping with Grief : Litsa Williams


The other day my husband and I were in the car and Into the Mystic came on the radio.  Exchange that followed:

Me: Oh! It’s my funeral song!

Him: (exasperated look) I know I know I got it. 

There are very few reasons to use the word “lucky” when talking about my dad being in the hospital and ultimately dying.  If you had asked me at the time I would have been hard-pressed to come up any.  Death always sucks.  There are no two ways around it.  But in the years since we lost my dad I have become more aware of the things that can make an already impossible situation even worse.  The consequence? My husband is now married to someone who talks about funeral songs and DNR orders on the regular.  Bear with me here . . .

When my dad was in the hospital my mom, sister, grandmother, and I were all in agreement about what my dad would have wanted.  There were no big debates, arguments, ethics committees, or lawyers.  I would love to say this is because our family had some specific, thorough conversation about what all of our end of life wishes were in case the worst was to happen.  It wasn’t.  We were just lucky.  My parents may have talked about it with one another, but what I remember most is that we all just agreed that my dad would not have wanted things to drag out once care was futile.

I didn’t realize at the time how fortunate we were to all feel confident about his wishes.  It was much later, regularly seeing the conflict that can arise in families around end of life care, that I realized how lucky we were.  Of all the really crappy things we had to deal with, disagreement around goals for care wasn’t one of them.  Not all families can say that.

It probably goes without saying that we live in society that simply isn’t comfortable with death.  Of course no one loves death, but as Americans we are especially averse.  We don’t want to talk about end of life wishes because we don’t want to acknowledge death.  But we can’t run from death forever and after a loss there is one very productive thing I see many families do: they start talking about their own wishes.  Once we stop avoiding the reality of death impacting our families, using this to have some real, frank conversations about end of life wishes can be productive.  As much as we don’t want to think about when another loss might come, this important discussion may end up making that time just a tiny bit easier.

So if you decide as a family to have these conversations, what should you cover?

1)      Do you have an advance directive, living will, or a medical power of attorney? If so, does your family know where it is and what it says?

2)      Do you want CPR done?

3)      Do you want to be maintained on a ventilator (life-support)?  If so, for how long?  If you don’t want life-support but it is started, do you want it stopped?  You should consider these possible different scenarios: when you are terminally ill, when you have had a devastating brain injury or stroke, when you are in a coma.

4)      Do you want to be and organ and tissue donor?

5)      Do you want to donate your body to science/research/education?

6)      Do you want a viewing, closed-casket funeral with burial, or cremation?

7)      Are there any specific wishes you have for your funeral or memorial service?

8)      If you wish to be buried do you have a plot, or a place you wish to be buried?

9)      If you wish to be cremated, do you have a wish regarding what is done with your ashes?

10)  Do you have a written will?  If so, does your family know where it is and what is says.

11)  Do all the important family members know?

There are many documents you can use for end of life planning.  Some are very concrete in their approach and others leave things a bit more broad.  Find one that will work well for you and your family.  Five wishes is a well know advanced directive that is accepted in most states.  It is less concrete, but very easy to complete.  Click here for Five Wishes.

For a more concrete advance directive form you can use your state’s official advance directive/living will form.  Click here to find your state’s advanced directive form.

Though I don’t remember a specific family conversation before my dad died, in the years since we’ve spoken about end of life wishes quite a lot.  Not in a crazy, morbid way (says the gal writing for a grief website).  Just in a we-get-it-death-happens-we-want-to-be-prepared way.  My husband knows my life-support wishes.  He knows I want to be an organ donor.  He knows I want to be cremated.  He knows Into the Mystic is my funeral song.  Death sucks and this is an small way to make an impossible time just a little bit easier.

Can you leave it to “luck’?  Sure.  But if I left it to luck Phish would play at my funeral.  So do we recommend it?  NO!

Oh, and in case you don’t know it, you can check out Van Morrison singing my funeral song here.  If you wandered onto this post because you are making decisions on behalf of someone else, we have some tips about that here.

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7 Comments on "End of Life Wishes and Conversations"

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  1. Sara  February 10, 2014 at 11:18 pm Reply

    My mom passed away suddenly in May 2013, but I am still SO thankful that she and I had started to have “the conversation”. Her health had begun to decline and I think we both knew that it was time to figure it all out, even though we had no idea of how little time was left.

    Was it weird to talk about? YES. But in the end, we did it. And when it came time to make all of those decisions (in the great haze that is immediate grief and shock), I am really proud to say that I knew what she wanted and was able to honor her through that. We hadn’t gotten to all of it (knowing her funeral song would have been nice!), but we covered the big stuff.

    And you know, having “the conversation” in the car was maybe the best way to do it (for us). We didn’t have to look right at each other, and we had something else to focus on (like me driving down the highway) when it got too hard.

    Thank you for a great blog… I’ve been binge reading for hours after stumbling on it through Pinterest. I wish I had found you months ago!

    • Eleanor  February 11, 2014 at 8:32 am Reply

      Sara,

      Thank you for offering your experience. You know that’s really interesting that you say having the conversation in the car was easier. Somehow I always do feel like I have an easy time communicating when I’m driving, but I’m not sure I would have ever put my finger on that! I’m going to remember that one. I’m so glad you found us and I’m sorry about your mother’s death. Let us know if there’s anything specific you’d ever like to see us cover and we’ll be here if you need anything.

      Eleanor

  2. Christian Go  July 9, 2015 at 1:40 pm Reply

    Great Article. Thanks for the info, super helpful. Does anyone know where I can find a blank directive form to fill out?

  3. Joann Castro  May 4, 2017 at 5:49 am Reply

    We are having this issue between brothers, Sisters. Money is o n e the other home b and belongings. Dad passed 11/15,mother 12/16, little brother 5/1.. 2 of sisters made dicisions w/o communication., i am the 2nd to oldest. . Was left out of all.. never asked for my opinion, advise or to be given a sentimental item from parents. Now SIBILINGS ARE Hating each others, wanting to sell house, not having no one move in! M y heart is soo hurt, big and don’t know how to fix it. Sister inlaws also hating.. one of them., is doing black magic to house and to each of us , wanting to keep us apart..please help with advice.. need prayers our way

  4. Brian C.  February 7, 2019 at 10:54 pm Reply

    I just happened across this article. Very good timing…a dear friend of mine was just diagnosed with a rare aggressive tumor behind her right eye…we agreed we would not go the morbid route and allow the possibility of her death discourage us, but we agreed also that it would be wise to get her affairs in order. This article will be tremendously helpful. My mom died two years ago this month and my mother-in-law died last April, so this stuff is fresh in my mind still.

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