…fighting the current, going against the mainstream, trying to get to the source, trying to avoid deep water. Not exactly “up a creek without a paddle,” but working hard to stay afloat.
I want to help people discuss death, face mortality, make the most of life and plan ahead. In the hospice world we often speak of this as “reaching people upstream,” before an illness reaches end-stage, before an ICU admission, before a crisis-led conversation with family members who must make a difficult decision about life-sustaining treatment. These scenarios may still happen, but they would be made easier if difficult conversations among family members had taken place sooner and more often. Other than co-facilitating Death Cafe, a little public speaking and very few family consultations about natural death care, how can I do this?
I recently asked a palliative care professional, “What are the biggest challenges you face among patients?” Her answers were about attitudes and misunderstandings:
- I don’t need to worry about this until I’m in my 80’s.
- My family will take care of me, they will know what to do.
- You’re so pessimistic; I don’t want to talk about that!
And hospital palliative care team members often hear: “I wish I knew what dad wanted; I wish we had talked about this.”
My observations:
- People complain that their doctor won’t talk to them about death.
- Doctors complain that their patients don’t want to talk about death.
There is a huge disconnect here!
So I’m out here swimming around in the muck trying to figure out how to help us all communicate, prepare, face our mortality and work together to make the most out of our (finite) life. I keep making connections, talking to groups and individuals and students. And I keep studying. Will there be a way for me to make a living in this field? I just don’t know. Is there such a thing as a “death communication specialist”? Sounds like a medium who conducts seances! That’s not what I want to do! I want to be a medium who conducts heart to heart conversations with the living, further upstream from the ICU or hospital or hospice room, before it gets to that, which it will inevitably do for all of us. That’s where most of us end up, folks, like it or not, plan for it or not.
Any ideas? Can we talk? Will you meet me for coffee?
So, I’ve gotten a number of responses to my blog via email. It seems folks are reluctant to register and sign in to post a comment. I’ll post them here anonymously.
1.
Wow, Merilynne! I read your February 24th blog post! A staggering number of metaphors in that first paragraph! Nicely crafted! But forget about the swimming upstream one – salmon do that and you know what happens to them after they’re done with their upstream business…! But I digress.
You pose some very good questions here and I can appreciate your frustration at the typical responses that you are getting. Death is not an easy subject to broach and the reactions that you cite in your blog support this.
You are absolutely correct. There is a huge disconnect out there among many segments of the population. Husbands and wives, parents and children, doctors and patients, spiritual advisers and believers – they are all often uncomfortable, and therefore reluctant to discuss end of life planning, yet they complain over and over again that the subject needs to be discussed!
Let me state emphatically, in my opinion you have made excellent progress in creating awareness in the region – in “getting the pot stirred up!” Look at what you’ve accomplished – the website, the blog, the media, the Death Cafes, the Ann Arbor Green Burial Network! You’ve got people talking, thinking and getting to the point where they’re ready to act. Why, you’ve even got me making that boring drive up to Ann Arbor!
The question you ask in your last paragraph, “Will there be a way for me to make a living in this field?” is critical. In my opinion, the need is there, so there is great opportunity for those who can address the need competently and cost-effectively to make a very good living at it. And by that I mean both financially, and more importantly, achieve great personal satisfaction in delivering the service to satisfied clients. Whether the service is on an individual basis, a group practice or large local, regional or national business model, “if you build it, they will come!” I’ll help.
Here is another one:
Liked your “Swimming Upstream” blog post. It made me wonder, 100-200 years ago:
a) Did people more easily have these conversations about death
OR
b) Did people still avoid the topic, but the community knew what to do when it happened?
In other words, was death taboo back then too, but the past simply looks more golden to us lionizers of a throwback way of death care because the modus operandi of 2 centuries ago matches our notions?
And another:
It is so obvious yet so complicated to make it part of our living repertoire and conversation. We both know people are thinking about these issues because when they are in a safe and nonjudgmental space their thoughts, questions and concerns actually flow quite effortlessly, especially if they have the support of a group. When people find out what I do they find a way to share a personal story about death and loss. People are hungry to share yet the culture cocoons them in fear and their potential for metamorphosis becomes sadly stunted. It is a cultural misunderstanding that talking about death leads to death rather than to a fuller and more authentic life. It is all such tender territory and I must remind myself daily in meditation not to be righteous or flippant. My intention is to educate, support and cultivate compassionate conversations and potential plans for their future. We seem to really want the same thing. I have been researching for so long that now I want to WORK and really dig in.