Monday, March 09, 2009

Existential Distress

I had an odd conversation with my father tonight. He asked me to talk to him about the difference between sin and evil, which I did very cautiously, emphasizing that I was only sharing my own opinions. Then he told me that evil doesn't matter anyway, because both the participants and the victims become numb to it. He proceeded to go off on a long existential riff about how life is meaningless, how there's no ultimate reality, and how the world is just an illusion. He allowed as how he loves me and my sister, but then said, "But how important are you, really? You only have the meaning I assign to you."

I gently pointed out that my sister and I are also important to other people, and asked Dad if he wanted to talk to a chaplain. He said, "I am talking to a chaplain." Before I left, I asked the nurse to ask the chaplain to stop by anyway: it may be easier for a stranger to make sense of all this than I can, and anyway, chaplains aren't supposed to minister to family members any more than surgeons are supposed to operate on their friends and relatives.

It turns out that there are articles about existential distress at end of life. There seems to be a fairly extensive literature about whether such patients should be sedated out of their unhappiness.

Dad's nurses are happy with how physically strong he is: evidently he transferred himself to a wheelchair today, and he lifted himself by his grab bar when they were changing his bed, although the effort left him gasping for breath. He may be transferred to a nursing home as soon as tomorrow. We're not sure where he's going -- the VA place or the community facility I requested -- but wherever he lands, I'm going to see about getting some spiritual counseling for him.

And yes, I know: this is what hospice is for. All the medical folks I've asked, though (at least those who know Dad personally) have frowned at me, as if I'm being undaughterly for raising the subject, and said, "Oh, no, it's not time yet!" Tonight I asked Dad if he thinks he's dying, and he doesn't think so, either.

Over dinner, I discussed Dad's distress with Gary, a card-carrying existentialist. We decided that the meaning of life is that motto so beloved of emergency personnel, environmentalists and Girl Scouts: "Leave the place better than you found it."

Works for me. I think that's a lot of what the world's spiritual teachings are about, when you get right down to it.


  1. It sounds as if your Dad's fine mind is working... he is pondering the construction of reality! That in itself is a big change from some days ago when he was so confused and disoriented. I do think that folks whose minds are working may end up thinking about far-reaching things when their lives change drastically, and your father's life has changed drastically in the last several months whether or not he's ready for hospice! Carrie Doehring is a fine pastoral theologian at Iliff School of Theology and I took the basic Pastoral Theology and Care class from her using a book she's since published (though I can't recall the title.) She talks about a couple things that might help: first, the multiple dimensions of loss (drawing on work by Herbert Anderson I think), then the idea of broken symbols (Robert Neville). One thing that I found really helpful and thought-provoking in her writing and teaching was the notion that just "finding meaning" may not be enough, if the meaning doesn't help us bear the weight of our suffering. And you're right, this isn't something a family member can always help with. Be careful with chaplains though, if they are fundamentalists of one sort or another, including New Age fundamentalists or even existential fundamentalists! it may be hard for them to sit with your Dad and explore with him rather than try to get him to think and feel a different way... BTW, although I agree with him that perpetrators and victims can be numbed by evil, to me that makes evil matter more, or be more important to confront, because the numbing is one of the hugely destructive effects of evil and allows evil to grow. Ask him what he thinks of that! He's smarter than I am so who knows what he'll say. I also agree with him in some ways about his reality, about how he gets to choose how important you or anyone else (Fran?) is in that reality, but I disagree of course that his assignment of importance is what makes anything objectively real. These radically individual forms of philosophy kind of fall down when taken beyond the individual. Again, he'll have a comeback I am sure.

    Hang in there, all of you! Prayers continuing.

  2. Anonymous5:47 AM

    I wish I had seen that article or even heard of existential distress at end of life. I would have been better able to comfort my Mother-in-law over her last few weeks. I didn't 'hear' what she was saying at all. /The chaplain at the nursing home where my mother lives is very tuned into the existential issues for end of life. He never misses a chance during Sunday morning services (and perhaps other times as well) to tell the residents that he loves them, that G-d loves them, that their lives have meaning still and that after death something wonderful awaits. For example, he talked about 'pray without ceasing' and aksed who could do that when busy with work, family, community. But NOW, as they are in a nursing home, they finally have time to pray and what a blessing that is. Just one small way he reminds them that they are valuable still.

    I'm sorry to hear about your dad. You and your husband and your sister must be exhausted from running to keep up with events.

    Our prayers are with you as you consider what choices you make for the future.


  3. I heard a very interesting definition of "terminal" a few years back. Here's how it went:

    If you got a phone call one morning telling you that so-and-so had died, would you be surprised? "Terminal" was the definition if you could answer that question, "No, I wouldn't." So what would your answer be if you got that fateful call from the hospital or nursing home one morning? You'd be sad, of course; likely devastated. But would you be surprised?

    Or think of it this way: is your dad's life expectancy greater than six months? If not -- and realistically, from reading your posts, I'm not at all sure it is -- then hospice is appropriate. As you well know, hospice referrals are far more likely to be made too late rather than too soon, before the patient (and FAMILY; that means you; you deserve more than just the virtual support of your internet friends) can benefit optimally from what they offer.

    Just a few thoughts.

  4. It was Julian of Norwich who wrote "...and all shall be well, and all manner of thing shall be well..." thinking of you and Gary and your father often throughout my day, sending peace.

  5. I have to agree with #1 Dinosaur -- the reaction of "it's too soon to think of that" is exactly why late referral to hospice is all too common. It does sound like your dad would be eligible, and it might be worth starting the discussion about what hospice can do to bring more quality of life to your dad, whether he winds up in the NH or back in Assisted Living (it might make it possible for him to stay long in the AL setting).

    I understand that you need to see what rehab can do for your dad, but for both of you, all of you, keep your eye on the true prize -- what approach is going to give the best quality of life and the best opportunity to appreciate and savor whatever time, long or short that is left (remember, life is terminal).

    As for the "carefully vet the chaplain" comment of terri c, maybe my experience has been particularly circumscribed, but in general, I am impressed with the chaplains I've worked with's ability to leave their own belief system at the door and be present for their patient where they are.

    Finally, about use of palliative sedation therapy (PST) for existential distress -- generally palliative sedation is for physical distress/intractable symptoms. The VA, for example explicitly forbids the use of PST for existential distress. Others places with policies that would allow it would consider it only very rarely, and only if the life expectancy was hours to days.

    De Graeff A. Dean M: Palliative Sedation Therapy in the Last Weeks of Life: A Literature Review and Recommendation for Standards. Journal of Palliative Medicine 2007; Vol10 (1); 67-84.

    Cherny NI. Portenoy RK: Sedation in the management of refractory symptoms: guidelines for evaluation and treatment. Journal of Palliative Care 1994;10;31-38.

    Sorry to go on for so long, you just hit a number of my hot spots. Sending you and your family lots of thoughts and prayers.

  6. Hi Susan again, I too think, with #1 Dinosaur, that your Dad might qualify for hospice although as marachne says it's his decision and yours what to do next. Given how well your Mom did in rehab it makes sense you and he would want to give it a try. To marachne: I actually am a chaplain, a hospice chaplain at that, and have seen awesome ones and also some scary ones, hence the warning. We're all human and not every chaplain is right for every person, and quite frankly not all religiously-trained chaplains are trained to work comfortably with those who are not religious. Also I can't imagine anyone wanting to use palliative sedation for your Dad, that thought never even crossed my radar, merciful heavens. Were I ever to meet him, I'd love to sit and talk to him and see where and how he finds meaning. And to anonymous, thanks, you've validated an idea I've had about chaplaincy, I might not have called it a response to existential distress--I think it is important to experience people as full people while they are old, or dying, or whatever, and let them know how we care for them and value them and enjoy them.

  7. Jeff Smith12:34 PM

    Dear Susan --
    I haven't been reading too many blogs lately, so decided to check in on a few today. I was at Making Light, and thought "I'll check on Neil Gaiman and then Susan Palwick." So your name was freshest in my mind when I opened Neil's page. Oh no, I thought, Susan's father died; but why is she in the UK?
    No, that was Neil's father, unexpectedly. I'm glad to see that yours is still with you, and still doing somewhat okay. Enjoy your time together.
    All best,

  8. terri c, thank you for reminding me that we all range -- as you said we have a range of abilities and skill sets across all professions.


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