"We just choose to be present."

December 7, 2013 10:09 PM

In 1986, Sandra Clarke was working as a staff nurse at Sacred Heart Medical Center in Eugene, OR when a dying man asked her to sit with him. She agreed but first needed to make her rounds and the man died alone in his room before she was able to return. Troubled, and feeling that she had failed a patient, she resolved to gather volunteers to stay with those who were alone and close to death. Ms. Clarke enlisted her entire hospital for a bedside vigil system to help ensure that patients would not be alone when they died. In 2001, Sacred Heart formalized the program as No One Dies Alone (NODA) and over the last decade, it has spread to hospitals across the US. "Susan Cox Is No Longer Here" offers us a glimpse into the NODA experience in Indianapolis.

Background

"Yet when the medicine bag is empty, probably the greatest thing that a patient needs is comfort and dignity," Clarke said. "Those two simple things I couldn’t give to this man."

* Modern Medicine (2009): 'Will you stay with me?': The No One Dies Alone program

Additional articles about NODA volunteers have been published by the Los Angeles Times and The Stanford Daily (pdf).

posted by zarq (22 comments total)

This lady is the very definition of a good person. To provide comfort like that to strangers is beyond wonderful.
posted by arcticseal at 10:28 PM on December 7, 2013 [8 favorites]

San Francisco's Laguna Honda Hospital and Rehabilition Center, the last public almshouse in America, has a No One Dies Alone program, started by Spiritual Care Coordinator Rev. Bob Deel. Laguna Honda is also the subject of an interesting book, God's Hotel. [Disclosure: I am a volunteer chaplain at Laguna Honda. It's an amazing place.]
posted by twsf at 10:33 PM on December 7, 2013 [9 favorites]

tswf,

I did my High School community service at Laguna Honda. It was an astonishing experience, learning rather young that our society has no idea what to do about the old and infirm. I had no idea something like NODA had popped up but I'm not surprised it's at Laguna Honda.
posted by effugas at 11:44 PM on December 7, 2013 [3 favorites]

This moves me so much. I am very glad to know about it and will try to discover if anyone in this city is involved.
posted by Anitanola at 12:04 AM on December 8, 2013

When I was 17 my father had a stroke and was in a coma for 5 years. He never recovered. The night after my mother made the decision not to resuscitate during his third bought with pneumonia I stayed at home rather than sitting with him in the palliative ward.
I was 22 years old and did not know any better.
The fact that I did not sit with him during his last night is the single biggest regret of my entire life. If I could change anything in my life that would be it.
So, kudos to Sandra Clark and I dearly wish that someone like that had been around those 26 years ago.
posted by Phlegmco(tm) at 12:05 AM on December 8, 2013 [13 favorites]

"The end is important in all things" - Yamamoto Tsunetomo,
posted by Hicksu at 12:19 AM on December 8, 2013 [5 favorites]

The Susan Cox story is pretty amazing for so many reasons. Good post.
posted by efalk at 12:46 AM on December 8, 2013

Another great post. Thank you Zarq.
posted by Daddy-O at 6:02 AM on December 8, 2013

This seems like the ultimate honoring of dignity. We should aspire to enable more moments while we're here, & not just our last one.
posted by yoga at 6:06 AM on December 8, 2013 [2 favorites]

I sat with my mother during the long slide into death. It was not dignified. It was funny and awful. She didn't know I was there, and she soon slid into Cheyne-Stokes breathing (occasionally loud gasps for breath, with long periods when she wasn't breathing). The skilled nursing center was having its holiday party (my mother decided to die on Christmas, and she did decide--she started refusing food and water a couple of days earlier), and the social director at one point swept into the room, addressed her by her first name (my mother was an Episcopal priest with a Ph.D., but they all persisted in calling her by her first name), and seeing no movement, asked if she was dead and leaned in to listen for breathing. My mother gave a gasp, the social director gave a shriek, and my husband and I had a hearty laugh after she left the room. The place was playing holiday music, and as usual there were the occasional calls of "Help me" from bewildered residents disrupted in their routines by the festivities.

No, it wasn't dignified. It was funny as hell, and awful, and dumb. But my sister and brother were both racing to get there so they could sit with her, because they weren't in the area. I was the one who was around for the previous ten years. I know my sister and brother were very sad they didn't get to sit with her and say good-bye while she was dying.

I suppose I would have been sad too if I hadn't been able to get there. But my main function, as I saw it, was to be there to finish up helping my mother to do what she wanted to do. I had already fielded the call the previous day asking if they could take her to the hospital, and told them no, and this was just to guard her against the people who would have tried to save her against her will. She didn't know I was there. She was already gone.
posted by Peach at 6:24 AM on December 8, 2013 [9 favorites]

One of the things that stands out for me in my grandmother's death, was my father singing old 1930/40's songs to his MIL and holding her hand. Sometimes she was present, other times she was away, but it was an act of love and devotion that still brings me to tears a decade later. The smallest things can make all the difference.
posted by arcticseal at 7:15 AM on December 8, 2013 [8 favorites]

I live here (Eugene, OR), my child was born in that hospital, I have visited several dying friends in the ICU there, and yet I have never heard of this.

Great post!
posted by Danf at 8:26 AM on December 8, 2013

My mom died in hospice care a few months back. She very specifically told all of us that she did not want us by her bedside when she died. She didn't want to put anyone through that, and she was a very private person; she wanted to pass peacefully, by herself.

I respected her wishes, as did the rest of the family. And up until that point, I hadn't really realized that that was an option. Now that I do, though, I'm totally on board with it. I don't want my loved ones to have to reconcile my life with my final moments; I don't want people around when I gurgle to a halt. My death won't be a tragedy to me, and I don't want to have to worry about the people to whom it will be while it's happening.

I want to die alone.
posted by MrVisible at 8:26 AM on December 8, 2013 [11 favorites]

She very specifically told all of us that she did not want us by her bedside when she died.

My grandfather died while my mother had stepped out of the room for less than one minute. She firmly believes that he chose that moment, when she was out of the room.

We had worked hard for days to get him back in his home, although he was basically non-responsive there was no point to him being in the hospital. The last word he said was "Home!?" (to me, that afternoon, when I told him we had arranged for him to go home).
posted by anastasiav at 8:34 AM on December 8, 2013 [2 favorites]

My Grandpa died in a nursing home. When it became apparent that the time was coming he was moved into a nice single room where we could spend quiet time with him. He couldn't talk but seemed aware of what was happening around him and just slowly, and I mean really slowly just got quieter and quieter. Grandpa's strong heart kept his body going for days longer then was expected. We had lots of family around and made a schedule to try to always have someone around but couldn't cover all the time.

In stepped the local ladies from the town. Didn't know any of them. They just volunteered to sit with dying people. They would sit by the bedsides all night long and just knit or crochet. When I'd show up in the morning they would just say hello, say how he was doing, pack everything up and leave. They were so respectful of us and my grandfather. I was amazed. I had never heard of anything like it before. Mom said the same thing happened when Grandma died ten years earlier and that this sort of volunteer vigil had been happening in the town she grew up in and surrounding towns for as long as she could remember. It's just what people did and had always done.
posted by Jalliah at 9:52 AM on December 8, 2013 [12 favorites]

To do this over and over must take amazing strength and compassion.
posted by BlueHorse at 9:57 AM on December 8, 2013

Thank you for the wonderful link...
posted by Alexandra Kitty at 10:07 AM on December 8, 2013

Whoa. While I understand that this idea that "no one dies alone" is motivated by kindness, it also strikes me as presumptuous, maybe even arrogant. Why assume that the one thing that every dying person craves in their last moment is company? Presuming to know what another person wants seems like an odd way to "respect their dignity." I really have no idea how I'll feel about it when the time comes, but I expect that it will be my strong preference to die alone. People who assume that we all have the same preferences make me nervous.
posted by Corvid at 3:59 PM on December 8, 2013

The article mentions the patient signing consent. I cannot imagine that this is forced upon patients who don't want it.
posted by LittleMissCranky at 4:09 PM on December 8, 2013 [3 favorites]

I have been at bedside, on two different occasions, when a person I was very close to (my dad, a dear friend) died, and both deaths were rather different. One stark similarity was the feeling that my presence was, for want of a (much) better word, an honor. Being with someone you love when they leave the world is sad, heartbreaking, and difficult, but it's also, at least in these two instances, beautiful. I know this is not the case for everyone or at every death, but then and there it was a right place to be. I'm glad such a program as NODA exists. Those are some seriously awesome people.....
posted by but no cigar at 7:45 PM on December 8, 2013 [3 favorites]

This is such a beautiful program. In a hospital, no one should have to die alone in a unless that is their wish. I'm going to ask the people I know at two local hospitals what it would take to have a similar program.
posted by ob1quixote at 12:04 PM on December 9, 2013 [1 favorite]

I'm going to ask the people I know at two local hospitals what it would take to have a similar program.

That was my first impulse on reading these articles, too. And while searching to see if this program exists at our local hospital, I came across this episode of a CBC Radio program, "Death Be Not Scary," that features an interview with Sandra Clarke.
posted by hurdy gurdy girl at 5:51 PM on December 14, 2013