Monday, September 5, 2016

Do hospice patients reveal the secrets to the universe?

by Lizzy Miles

A couple of years ago I wrote a Pallimed article called, "We Don't Know Death: 7 Assumptions We Make about the Dying."  Since I wrote that article, I have further contemplated the “so what” factor of the assumptions to develop suggested interventions.

This article is the sixth in a series of articles where I take each assumption from the original article and explore the concept in greater depth to include implications and possible interventions. In my last article, I wrote about the assumption that family matters will get resolved.

Here is our next assumption: The secrets to the universe will be revealed.

I admit I went into hospice work with the expectation that I would have profound experiences at the bedside with dying patients. How could one not have this expectation when we see articles about famous last words, such as the NPR article about Steve Jobs saying, “Oh wow” just before he died?

Indeed, I have captured some fascinating thoughts from some of my dying patients. One woman who was devotedly Christian told me, “All faiths go through the same door.” Another time I had a patient say, “Love has no distance.” She said that she knew her family couldn’t be present at the bedside, but she still felt love from them and for them. As it turned out, I used that phrase to comfort the audience in my speech at our hospice memorial. These statements are so simple and yet so profound.

I’ve even taken to asking patients, “What are the secrets to the universe?”  My first indication that I might be off base was a 99 year old woman who had no desire to reflect on her life. Over the course of a year I visited her monthly, but the conversation never got too deep. She didn’t want to look at photo albums, did not want to resolve differences with family, and rarely wanted to process life choices. She would, however, talk about shoes. I did ask her the “secrets” question once, and she gave me the stink eye. She said, “There are no secrets.”

Intervention: Recognize that not every patient wants to reflect, impart wisdom, or do a life review.

There are many books on the market about nearing death awareness, most notably Final Gifts. These books perpetuate the notion that dying patients have special insight into their own prognosis. The stories in the book are often about travel metaphors. Here is transcript of an exchange I had with a hospice patient I’ll call Alice.

Alice: I’m trying to get to the stations. There’s two buses. Either one. They don’t tell me anything.
[What do you want to know?]
Alice: How to get on the bus.
[You can]
Alice: That’s what they tell me. [pause] When I picked up the paper I saw your name on there.
[My name? What did it say?]
Alice: It sounded good.
Alice: The door over there is the door to the building.
[Are you going to go?]
Alice: I will later. That will be the last place I go.
[When do I go?]
Alice: I don’t know, I will have to check. [pause] They say go up and wait and someone will get you.
[What’s on the other side of the door?]
Alice: Another door.
[Who helps you through the door?]
Alice: Nobody. If you know the door is there, you go through by yourself.
[Can I visit again?]
Alice: [smiles] If I’m still here in two weeks.

After my visit, I went back to the hospice team and told them that Alice was seeing the door and she would not be around much longer. As it turned out, Alice did live past those two weeks. In fact, she lived another two years. I got so caught up in the mysticism of the moment that I forgot that she had dementia and she very well could have been talking about the bathroom door.

And yet… two years later I had quit social work and was volunteering for a while, and I was asked to sit with her while she was dying. I was with her the moment she died. Coincidence?  I’m not sure. I’m with Mulder, I want to believe.

Intervention: Reflect on how your own belief system plays into your practice.

In my last article, I mentioned Ira Byock’s book, The Four Things that Matter Most.  The content of that book is relevant to this assumption as well, because readers may believe that there are meaningful final thoughts that are conveyed at the bedside. Sadly, I have seen family members who are hoping that the patient will say something, or they themselves will have a transpersonal experience. Sometimes none of this happens and the patient just dies.

Katie Roiphe’s New York Times article, “Dying with Nothing to Say” reiterates this point.

As a society, we share stories about final words and transpersonal experiences, because it seems to soften the blow of the reality of death. But when you have family who hopes for something to happen which doesn’t, it can be heartbreaking.

Intervention: Educate loved ones that meaning-making often comes from within and over time. Encourage activities that aid in processing thoughts such as journaling or art therapy.

As for me, I know to temper my expectations, but I’m still going to ask for the secrets to the universe. Last week I asked a patient who was over 100, and she said, “Everybody has their own way of handling things so my advice might not fit for others.” Her tablemate had heard my question but not her response and asked her, “What IS the secret?” She clasped her hands to her chest and said emphatically, “Love, love love.”

But that’s not really a secret is it?

Lizzy Miles, MA, MSW, LSW is a hospice social worker in Columbus, Ohio and author of a book of happy hospice stories: Somewhere In Between: The Hokey Pokey, Chocolate Cake and the Shared Death Experience. Lizzy is best known for bringing the Death Cafe concept to the United States. You can find her on Twitter @LizzyMiles_MSW

Pallimed | Blogger Template adapted from Mash2 by Bloggermint