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Peace Talks Radio Host Paul Ingles talks with Camille Adair RN, Denys Cope RN, and
Paul Ingles: Larry Dossey and your document Camille calls on the medical profession to really change the paradigm from seeing death, as he put it, as “the enemy” or death as “an abject failure of everything.”
Let me add to that. You also hear in the language about dying; “I’m going to fight this disease” or someone “lost their battle with cancer.” What would it start to sound like differently Denys?
Denys Cope: I think it’s critical as a culture, and you just brought up examples of it, that we change our articulation around the dying process.
When I first became aware of that was when Terri Schiavo was dying and at the same time the Pope was dying. I remember hearing on the news they said, “the Pope is failing,” and I went, the Pope is not failing. Number one he chose into no extraordinary measures. He is not failing. He is progressing in his natural process of dying and is embracing it.
We need to see that death is not a failure. People are not “failing,” they are progressing. They’re not getting worse, they are moving along in their trajectory or their disease process. We need to take those words out of our articulation about dying.
Ingles: Right. In the film Hospice, the late jazz singer, Chris Calloway supposes; what if that moment of passage of death is as thrilling as anything you’ve ever experienced in your life. It made me think; if most religions preach that the soul is passing to a better place from life in this world as they seem to, then why is there so much sadness and fear associated with death Karin Thron?
Karin Thron: I was thinking about making the distinction between fear and sadness because certainly we put them together, but really the sadness is about the loss and about change and about how our lives are never going to be the same. We’ve lost somebody, some big integral part of what we’ve known. But the fear is really a different thing. It comes as its root really in our human survival instincts. It’s just a root piece. That means that we are always fearful, vulnerable in the world because ultimately somewhere we know, we’re going to die or things are going to happen that we can’t control.
When we separate those two, at least we can begin to look at it. The sadness is just going to be there. Sadness is grief. Grief is a natural process, has its own course and will resolve in its own time, but the fear is a piece that the more we can understand about what those root pieces are and the experiential pieces that we’ve built around them, then the more we can accept things.
What we see so often when somebody is really in the process of thinking about more treatments, thinking about more serious chemotherapy or other things, it is that struggle, that fight that they’re in this battle with and when they come to that place of shifting that and changing that and really thinking in terms of not doing that piece anymore, not fighting anymore, but just living each moment and being present in the here and now for whatever time there is, it is an incredible shift that happens that allows peace to come inside them and all around them when there’s not this focus externally to go to the next doctor, to seek this care, to do this treatment. It totally transforms the situation internally and externally for them. We see that a lot.
Cope: As long as we stay attached to life, there is suffering. Attachment creates suffering. It’s like the proverbial river of life. It’s flowing and if we are holding onto the banks and clutching and staying attached to the sides of the river, we’re being buffeted by the rapids and by the flow of the river. Once we let go of that attachment and allow the river to carry us, that’s when the ease and the grace come in.
I have watched time after time after time people being attached to life. They come onto hospice very attached to life and then in the course of being supported in where they are, they come to this place of letting go of that attachment and they surrender into the inevitability. With that comes what Karin just referred to; this incredible peace drops in and they come into a fuller place of living the last days of their life rather than suffering.
Ingles: There’s a line in your documentary Camille where Stephen Levine says; “most of us don’t really fear death, we fear pain.”
I certainly am not planning on going anywhere soon, but you never know and I have two young adult daughters and they’re very aware of what my wishes are should something change regarding my health status.
Ingles: Well you actually recently told me you had a severe infection with a routine procedure that put you in danger.
Adair: That’s right.
Ingles: What’s changed in your life since that?
Adair: During the recent hospitalization where I had a near-death experience, one of the things I realized is that there were sort of two parts of me and so it’s sometimes difficult to speak to the experience because I will say that I could feel myself getting closer to death and I had a deep sense of peace around that process.
There was another part of me that I sort of would associate or attribute to my personality in this world and that’s where things got tricky. The part of my personality that is a nurse, that is a caregiver, that can be an overachiever, that likes to have a sense of control –
Ingles: A fixer?
Adair: That’s right, a fixer. It’s the typical wounded healer nurse archetype that is a very interesting framework to learn from for me in my life. I really saw a lot of that stuff come up.
I think that in terms of peacemaking for after that experience, what I’ve learned is that I have even less fear of death on one hand because I could feel what it was like being at that level of deep peace as my body was changing.
For me, a lot of that now has to do with just accepting what is; even my own humanity, even the fact that yes, I do have these tendencies and this will be my life’s work.
Rather than having the expectation that I will die perfectly, it’s more about accepting the fact that I will make mistakes or it won’t always look pretty as I move through my humanity and really allowing and working on vulnerabilities. I think that’s probably one of the greatest things that I can do at least for myself based on my wiring.
Ingles: You’re talking about forgiveness too.
Adair: Well and I think for me sometimes forgiveness feels like something has been wrong and I think that’s how hard I have to work at this; to actually think of it more in terms of acknowledging what is, accepting what is, that even in my raw imperfection, there is beauty in that.
Back to the practical issues; what I would like to say is that there is a document called The Five Wishes that is actually a legal document in the State of New Mexico and Denys recently shared at a conference, Advanced Care Planning, about the Five Wishes. So I’ll turn that over to you Denys.
Cope: The Five Wishes I think is the most comprehensive of all the end-of-life documents out there simply because it includes everything.
It has the living will and you get to talk about what you want done for you when you are faced with impending death. Do you want to be put on a ventilator? Do you want IVs? Do you want heroic measures and if so, details of what those would be.
It also asks who you want as your durable power of attorney, which normally those are two separate documents. The durable power of attorney is the person who will make medical decisions for you in the case of incapacity. You certainly need to have had a conversation with whoever you appoint to talk about what your wishes are.
Within The Five Wishes you go through what you would like and then you get to talk about how you want to be cared for, not just what you don’t want, but what you do want. You get to talk about if you would like somebody there or the type of music you might want if any, etc.
I have to say there is a part of me that has talked about how The Five Wishes, for me, was clearly written by a living person and not a dying person because it talks about how people may want massage, want their hands held or constant presence, but what I’ve seen over time is that as we are truly in our dying process, we want to be less interacted with. We may want presence in the room, but sometimes we don’t even want that. The minute somebody leaves the room; somebody goes out to answer the door or fix a meal, that’s when we can get out of our bodies.
So The Five Wishes document is often filled out from the eyes of the living who project what they might want when they’re dying, but the dying may really have a different perspective of what they want.
But The Five Wishes is a way of looking at all the aspects of dying; the legal, the personal, the familial (for want of a better word). If we don’t have a blood family that we want involved, we certainly have our “family,” the people we’re in closest relationships with. How do we want them to be with us and how do we want our community to be there? It covers all those aspects. It’s one document. You sign it and you have it witnessed. There has to be a witness for it. It doesn’t have to be notarized.
Then that can be copied and be distributed. I am actually the power of attorney for one woman and it’s in her hospital chart. So whenever she gets readmitted to the hospital, that comes into her current chart and it always stands as a legal document. She doesn’t have to fill them out over and over again. You can have copies wherever you are; give one to your physician, give one to each family member. It becomes very comprehensive and compact.
Thron: So it’s sort of a workbook I think that you can really work it through.
The one thing I was thinking about is that you go through that whole process I think anticipating things or trying to anticipate things makes a lot of sense and then you have to accept that it is going to be what it is and that in the given moment, you may not want that to be that way and so you have to be able to adapt to it as it goes along too.
Ingles: It sounds like you all would be making the case that we should be teaching about a relationship with death quite early on in our lives instead of waiting until it’s on our doorstep. How early on? What might that sound like? How should parents talk with young people? Karin mentioned it briefly before, but have you thought about this? How would it look differently as opposed to this being a topic that we don’t want to bring up because it’s upsetting? How could we lay some groundwork so that when young people get into their teens and their 20s they’re a little bit more ready for this?
Adair: I would say there would be two things for me. One would be nature. I think nature is a great teacher around the cycles of life and that’s a great way to engage children in having an understanding of beginnings and endings of change and I also think attending to your spiritual life as a family is another way of bringing the sacred into the process of living and dying.
Ingles: John Monroe Cassel, is a hospice chaplain and there is an example that he talked about in your documentary.
John Cassel: About walking in the forests of the Eastern part of this country that I have romped in and played in and walked in and when I’m walking through the forest, I smell the deep, deep wonderful rich aroma of decay and dying and I know that there’s a place for that and I know that the place for that is to take us back into life as the new shoots grow and the new forest floor begins to prepare for life again.
Ingles: Somebody else was talking about the idea of the leaf that falls and dies.
Adair: It actually becomes part of the tree and nourishes the tree to continue through winter. Well, I think that if we use nature as our teacher around the changing of seasons and you think about the vitality that you see in a tree for example in the summer and then the way the leaves change color and eventually fall off the tree in the winter, we can think about a human being and take a look at the way that we not only relate to dying, but the way we relate to aging.
People are getting Botox and plastic surgery and there is so much that’s happening that is age-defying, so not only are we a death-defying culture, but we’re actually an age-defying culture. I think that for family systems, this isn’t an easy thing, being in this culture, but embracing the changes in our bodies and talking about them and that we model for the younger generations some pretty powerful ways of being human.
Cope: Yes. I think that when people share what’s been meaningful in their lives and the appreciation that they have for their family or other people who are important around them, those are the things that we hang onto and stay with us and help us.
Ingles: And we don’t have to wait until the last minute to do that.
Cope: No, and I forget what the reference is, but there are four things that they’ve identified to be said at the bedside that really clears it. There is; “Please forgive me,” “I forgive you,” “Thank you,” “I love you,” and if you can in some way embrace all of those four in whatever comes naturally to you, then you’re present.
What we find in being with people who are dying is that there is this movement, this natural movement for most people.
My father was an exception. He was a great teacher for me because he died angry and wouldn’t talk about his death and shut us all down.
Most people will move into a place of extreme presence and authenticity and let go of old wounding and be able to do this forgiveness.
I had one couple where they had been married for 34 years and they said either an hour after they got married or a day after they got married they realized they should have never gotten married and they stayed married for these incredible amount of years. They had two daughters. He evidently had been abusive. She wanted nothing to do with him as he was dying. She hired caregivers, went off to her psychiatrist and got her hair done and played golf and never interacted with him.
In the last 36 hours of his dying, (I was out of town for Thanksgiving so I wasn’t present) she was able to go in and sit at his bedside and be with him. What transpired, why that happened, I will never know. I know that there is an amazing sacred energy force that comes in at the end and surrounds and fills the room. I know that happened and then I came to visit after he had died and I made a family visit like we do and the daughters were there from out of town and they said to me; I don’t know what you all in hospice did, but this isn’t the same house we grew up in. The entire energy in the home had changed. There were no words for that. There was no explanation other than what comes forward energetically at the end of life.
Ingles: That makes me think that if you could say those four things to everybody after you have lunch with them or every time you part with your family on a routine visit …
Ingles: That’s the way I felt with my mom is that I couldn’t get there to her bedside, but I had no regrets about not essentially covering that territory with her every time I left so that’s a good reminder.
Cope: Yes and I also think there’s the reality that we can cover that territory after they’re gone because they are (as in your saying here) they’re just in another room and I think of how George Burns used to go and talk to Gracie every day. We can still talk to them and be with them just as requested here because they are really available. It is only in our Western thinking that we think that something has been shut off and they’re gone.