The Dying Process©2000 - Interview With Denys Cope, RN, BSN
Denys Cope is a registered nurse, a hospice worker, a personal coach, a teacher, and a lecturer to family members, physicians, nurses, and the public about being with the dying. This interview is the basis of a booklet called Dying: A Natural Process. Denys can be reached in Santa Fe, NM at firstname.lastname@example.org
Denys: Well, I'll just start in with the talk that I usually give to people. I've been an R.N. (registered nurse) for over 35 years, and a Hospice nurse for about 16 years. Several years ago I decided that the most important part of the job that I do when I am with an individual family, is teaching them about the dying process so they can get comfortable being with their loved ones.
People are often not comfortable around dying. And it can help to be familiar with the actual dying process, the physiology of it and the spiritual experiences of it, to know what is really going on. So I will describe what happens when Hospice gets called in, when people are counting their life in weeks or months rather than years. The main thing I would like people to know is that the dying process is not something to be feared. It is a tremendously sacred experience, and there is tremendous spiritual support for the transition. What I have learned over time is that the dying process is perfectly and naturally orchestrated, just like the pregnancy/labor/birth process.
It's just exquisite how the body naturally goes into the dying process.
No matter what brings you to the dying process, whether it is cancer, old age, lung disease, heart disease, whatever, the process is the same. I get the picture of a funnel: everybody gets brought to this place, and then they begin the same process; it becomes very recognizable. Many people say to me, "How do I know when my loved one is ready for hospice?" Or, "When have they begun dying?" I ask if the person has changed their relationship to food, because what I see is that the body has this natural withdrawal from that which sustained physical life. It's really switching from a physical energy source to a spiritual energy source, so usually there is loss of appetite with some degree of weight loss.
That's one of the criteria when we are assessing if we can put someone on Hospice. If there is a valid weight loss and other factors, we can say okay, they have probably started the process. The other thing we do as we enter the dying process is we start to withdraw from the outer world and turn inward. There is a disconnecting from social things, from those out-in-the-world kind of things; people in the dying process don't have energy for that anymore.
The first thing to go - it goes in layers - are our social connections; we stop having energy for that.
Next to go is our close circle of friends, and then pretty soon the only people we have energy for are our core people, the people for whom we don't have to put on a social face.
Throughout the dying process, we are doing what conserves energy. Eating lighter food because our body can't digest the food. And energetically or physically, withdrawing from activities, doing less and less and spending more time doing what we the living think is sleeping. We say they are sleeping, and the truth is they are doing a lot of this internal work, the work of dying.
Dying is a lot of work, it is hard work, and some of that is the work of introspection. I believe that not all of that is done on a conscious level. Just like our dreams are healing, I believe we go into these different states of consciousness, and we are able to do clearing or reordering, for want of a better word. This introspective work takes place on a lot of levels.
Ben: Can you say a little more about that introspective process?
Denys: From what I observe, one of the things that we do is to start taking stock of our lives, our relationships. We ask, "What has our life meant?" "Does anything feel unfinished?" We start to think about the things that we haven't done, the relationships where we may not feel complete, or wish we were in a different place. We start to do that, and from what people have told me as they get closer to actually dying, there is an experience of getting to see the "other" side.
In my experience, people go into a place of expanded awareness. They start to become aware beyond the physical level. They start to travel in their inner world, perhaps seeing where it is they are going, and going over and coming back, going over and coming back. I can't really know if that is what they are doing; that is my interpretation based on my experiences with people and what they have told me. I had a fellow once ask, "Well, what if you don't believe in that kind of stuff?"
I tell the story of this fellow who was a botanist. He was very much a scientist, and he only believed in the physical world of things that could be measured and tested and seen. We would have long philosophical discussions about that. He was seeming to take an inordinate amount of time to die. I have found that people die in their own time. At one point the nurse said to him, "Will, is there anything that you are afraid of?" We explore that when people seem to be hanging on, if there is anything they are afraid of, or any unfinished business. He said, "Oh no, I'm not afraid, I've been given the gift of seeing where I'm going, and it's warm, and it's beautiful; it's just that I don't want to leave here." One of the things that we, as the living, do is to project upon the dying all of the things that we think that they must be thinking and feeling and experiencing. All of us surrounding Will were projecting upon him that he must not have quality of life anymore. He was relatively young, I think in his late 40's or early 50's, and had prostate cancer so he had a catheter and was bleeding a lot; his lower body was very puffy and swollen, he couldn't walk and was needing help with all the toileting, and was constipated and in pain, and you know, we thought, "This guy is suffering, why doesn't he just let go?" We could see he was getting thinner and thinner, and we thought, "What is going on?"
Well, he just loved his ex-wife, his current partner, and his daughter, and they were all there, three women and Will. And he didn't want to leave them, he didn't want to leave this life, this earth. He was still having visits from people, still very involved with his botany - he had done some founding work in that field. It was just amazing that we projected onto him a poor quality of life, and he felt that he still had enough quality of life that he wanted to stay here.
We also project onto people who lose their appetite our need for them to eat. We want them to eat because feeding our loved ones is our way of nurturing them. If they are not eating very much, that normally means they are sick. We want them to eat, and then they'll be better, and then they won't die. And the truth of the matter is, a dying person doesn't need that food, and often will tell you that they don't have much appetite most of the time.
They may occasionally have a craving for some food; they will bring it up to their mouth, and know that if they eat it, they will get sick. What they may do is go ahead and eat it in order to take care of their loved ones who need them to eat. They will ultimately be nauseated and sick because the digestion is slowed down, their metabolism is slowed down, and they really don't need the food. So if we have the wisdom to let our dying loved ones set the pace, and really go through grieving of the fact that we can no longer nurture them through food, and be aware that by acknowledging the fact that it is okay for them not to eat, we are also acknowledging the fact that they are dying. Then we look at finding other ways to relate to them and nurture them; being with them, playing and listening to music together, reading with them, talking with them. One of the really wonderful things to do with a person who is dying is to help them do some of that introspective work, and some of that is a life review. Really talking about their lives and the times that meant a lot.
Ben: Would you mind drawing that out a little more? Many people may not know how to do it. Any how-to stuff you can say about that?
Denys: Sometimes you can go through photo albums, sometimes you can just ask them to tell stories about the most important times in their life, where and who have been the important people in their life. Asking questions like, "What are some of the things you are glad or feel blessed are in your life, what are some of the regrets you might have? How have you dealt with some of the disappointments in your life? Do you feel complete?"
Ben: Any ways useful for people unable to talk?
Denys: Yes, that's one of the things that's very important to know: even people who are in coma can hear and take in information. I don't believe people who are dying go into coma; they become unresponsive because they don't have the energy to respond back, but they are certainly aware and taking in. I think a way to be with people who can't respond for some reason is to ask the same questions I mentioned and then leave space for them to reflect silently. What we have found works really well with many patients is to play their favorite music and read their favorite poetry or author to them. Many people where I come from in the South get a lot of comfort out of Bible passages, or whatever may be the religious teachings that they have followed. Those are some of the ways to be with people who aren't responding, and to create environments that are comforting and healing to their inner world. The sense of hearing is the last to go and even though people cannot respond, they can hear up until the very end.
"People are often not comfortable around dying. And it can help to be familiar with the actual dying process, the physiology of it and the spiritual experiences of it, to know what is really going on."
And that is another thing: really check in with people about where they are with their spiritual beliefs. They may have been raised Catholic or Christian or Jewish or whatever, and been away from their religion for years and years, yet when it comes time to die, as one woman said, "Well, I think I'm going to at least reconnect with God, because what if I'm wrong and there really is a God and I really do have to mend my ways?" I think it is important to explore this with people.
There was one fellow I took care of who was just one of the angriest people I have ever met. He was 51 years old and dying of bladder cancer, and he said, "Well what do you expect for someone who has been pissed off all of his life?" And he truly had been pissed off all of his life. He was very difficult to be around. We, including his partner, the woman he was with, tried to manage his pain. We would get one kind under control and another kind would pop up; we'd work on that one and another would pop up, and he could never be comfortable. After several weeks of this pattern, it became clear that he needed his pain, and he needed to suffer; that was part of the way he was atoning for what he had felt was pretty poor behavior with a lot of people.
The last three weeks of his life were very interesting. His son, 25, and his girlfriend did not get along; they were like oil and water. He finally asked for a family conference. I mediated the meeting, and he just said to the both of them, "You know, up until now I've been sick, but something has shifted and I know I'm dying and we don't have time for this any more. We have got to learn how to get along." From that time on, the peace that came into that household was remarkable. He really stopped his suffering. And even though he had a tube in his kidneys and still needed pain pills, there was some incredible peace he had come to. Quite remarkable. In his last three weeks of life he became a soft and loving partner and father. I find that many people, as they go through the dying process, come into it initially with a tremendous amount of fear. I met two precious women who taught me a lot about this. They came to the dying process terrified of what would happen when they died, and also terrified of what would happen when they left their families. I watched them move through the process and as they got to maybe a month before they died, they both had done this introspective work that I'm talking about, the inward work. I can't tell you what exactly they did, but they lost their fear of dying. When one of the women went into the hospital for one last time, she was told, "Your cancer is in remission, but your liver has been damaged; you are in liver failure, and there is nothing we can do for you." I thought that she'd be hysterical the next time I came to see her, because that is how she had reacted whenever she got sick before. However, she was laying in bed so peacefully, with her little trinity, the holy family in one hand, her rosary in the other hand, and the rosary playing on the tape player. She turned to me and said, "Denys: don't tell my children this, they will be so upset, but I am ready to go and be with my God."
What I've observed over and over again is that as long as we stay attached to this world, to this life, it is a struggle to die. It's just like riding a river. As long as we hold onto the banks, there is struggle. As soon as we let go and surrender to the process of dying, there is incredible peace and grace that comes in. It is quite profound. So there is the inward work, the withdrawing from food, the withdrawing from the physical world. One woman told me that, in looking back on it, she'd had cancer for a lot longer than she had known. It was springtime when I met her, and she said, "You know, now that I think about it, last winter I didn't feel like going to church as much. And for the first time in my life I didn't feel like building a fire."
She just didn't have the energy to do the things in life that normally mattered to her. And it was only in hindsight that she could see that she was withdrawing from the world and spending more and more time resting and conserving energy. I think part of it is physiological; part of our body wants to live as long as it can, wants to support life as long as it can. Another thing I see is that at the very end, when people are withdrawing from food, they withdraw to the healthy things that we should eat anyway. The first thing to go are meats and fats, that's the first thing people want out of their diet. And they keep moving towards the more easily digested food, potatoes and rice, and pretty soon they are down to pureed foods, applesauces and yogurts, and maybe ice cream, milkshakes, health drinks, and then pretty soon just juices, and then they are down to Gatorade and water, and then just sips of water. Then they stop drinking altogether. When they've done that, we know we are looking at about five days before they transition. Of course, some people keep eating until the day they die. This whole process can go very quickly or very slowly, just like labor. People usually withdraw from eating or drinking altogether. Some people lock their lips and will not allow you to put anything in their mouth.
As I've watched people withdraw from food and water, I've wondered, "What is going on here?" When we don't eat or drink, we put our body into a fasting state. And what is the purpose of fasting? Of course the first purpose most people think of is cleansing, but the other reason that people fast is when they are going for a spiritual experience. I think that the body naturally puts itself into a fasting mode, and therefore is in an altered state that makes the connection with the spiritual so much easier.
What we are aware of is family members telling us time and again, "Oh, they are talking to their brother again, who has been dead thirty years; they are really confused." Again, we are projecting on them what we think is going on, that they are out of their head. We tell the family, "This is normal, he is really experiencing his brother."
In Hospice we call it 'visioning.'
Usually when people experience visioning, we know they have about two weeks left. About 90 to 95 percent of the time, they see someone who has died before them. A small percent of the time, they see a living relative, but normally they see someone who has gone on before who usually show up as guides, as people who say, "It is okay, come on over." I went to visit this one woman in a nursing home; she had chosen to spend her last weeks there, and I asked her how she was doing.
She said, "Oh, I'm losing my mind, I'm seeing people who aren't really there." I said "Are they people that you do know or people that you don't know?" And she said "Well for the most part I don't know them." When I asked her to tell me about the people she did know, she repeated, "For the most part I don't know them," which told me that she didn't want to talk about the people she knew. I said, "Tell me about who you are seeing," and she told me that there were these three young men, "sitting up over there", and she pointed high up on the wall in the room.
"The main thing I would like people to know is that the dying process is not something to be feared. It is a tremendously sacred experience, and there is tremendous spiritual support for the transition."
I said, "Are they a comfort or are they distressing?" And she liked them. She happened to be a woman who liked men and did not like women. I said, "You can just relax. They are really here, and they are here for you, that is part of the process." She said "Oh thank God! I thought I was losing my mind." And then she could relax into it.
I once worked with a 14-year-old who was dying. She had gotten to the point where, the way she was breathing and the way her blood pressure was, we figured she would be gone within 24 hours. We told the family they could stop turning her (normally you need to turn people every two hours to keep them from getting bedsores). We said don't do that, she's too uncomfortable to be moved. 24 hours later she was still there; 2 days later still there. 3 days later, still there.
As I talked about earlier, I don't believe people go into coma, I believe they go in and out of consciousness, and I believe that is when they are doing their inner work. When they open their eyes, you really can see it; their eyes will be half-open and totally vacant, and then they will be totally present again, and they'll look at you. At one of these points, this young girl came back and said, "Mom and Dad, I've met a man from Santa Fe, and he's dying too. He asked me to go with him, but I told him I wasn't ready yet." She lasted for 2 more days. I hear those kinds of things over and again, regardless of people's beliefs, so I know that there are spiritual experiences that are comforting, and that there is spiritual assistance as people are preparing to do their transition. And if people know that it is okay and nothing is going wrong, but understand that everything is going right, when that happens, they can relax about it.
There was a little old lady who was close to death and the family wanted to make sure everything was okay. They called the nurse to come check her and this lady kind of gruffly said, "I'm seeing people who aren't there. What's going on?" Her Hospice nurse told her that a lot of people have that experience before they died of meeting people who have died before. She explained that those people sometimes show up for them. The nurse asked her if that was something she believed in. And in a very strong voice, she said "No! That's not something I believe in. How am I supposed to know who is alive and who is dead?" She was not at all comforted by her experience, but she was still having it. So there is definitely something that goes on, there is an expanded experience and an expanded consciousness. And we the living project what we think is going on for those who are dying, but we have no idea.
Ben: Can you speak of what you have experienced when a family, a friend, a loved one, is in their awareness and doing the things you've talked about, they've participated in the introspective process, and they are actually present, allowing that dying process to unfold naturally. What happens in the awareness of the loved ones who aren't dying?
Denys: My experience and my observation is that family members who can comfortably be with dying loved ones experience great gifts of intimacy, of being able to be with their loved ones in a way that makes things easier. They grow in their ability to give and share the honesty that people come to in their time of dying. They can be together in ways they may never have experienced before. I think about this one friend of mine in particular, a very dear friend of mine, a nurse, and her mom was dying. Her mom actually did not want to own the fact that she was dying. Her mom would talk and say, "If I die", but she didn't want to own the fact that she was dying. So she therefore wasn't so available for me to work with directly, to be able to ask, "How are you doing with the fact that you are dying'?" But the daughter was very aware that this was what was taking place.
The Mom's sister would show up for her in her dreams, a living sister who lived in another state, and from what she said, her mom would be fitful and restless and then it would be as if her sister would show up and give her instructions, and then her Mom would say, "Oh, I can do that," and would settle down and relax. Pat and her mother were able to talk about all the times they had had together and also how much they loved each other.
I remember a fellow who had some irritation in his brain that was causing him to have hallucinations that were clearly different from the spiritual experiences. It is very easy for us to see confusion vs. spiritual experiences. He had been paralyzed from the waist down for several months. He was restless and agitated and said, "Get me up. I've got to get to work." He had forgotten that he was paralyzed and couldn't move. He had told us in the course of other conversations months before he died that he actually had angels show up for him, and one of the angels' names was Speed Angel. About a month after we had heard about Speed Angel, he was restless and agitated, and his nurse said, "There is really nothing I can do for you, is Speed Angel around?" He said, "Yes." She said, "Okay, what I want you to do is to ask Speed Angel what you need." He did, and after about five minutes of silence, she could see him settling down. Finally she asked, "So, what did Speed Angel say?" He looked at her and said, "He told me that I'm just exactly where I need to be, and to just relax."
He just settled right back and was fine. It was quite remarkable. As you talk to people and they are having these experiences, there are ways you can certainly support them, and utilize them. Being open to their reality allows both the living and the dying to be comforted by expanded experiences.
Ben: You said we can recognize easily the difference between hallucinations and these spiritual experiences. Can you describe how you understand that difference?
"What I have learned over time is that the dying process is perfectly and naturally orchestrated."
Denys: For me, when there is nonsensical talking and restlessness and you can't reach the person, then we know there is real confusion going on, like somebody is disoriented and doesn't make sense. The people who are having these visionary experiences do make sense. The woman I was talking to who saw the 3 young men could be present and her conversation was appropriate and logical; I could discuss this with her.
It's like someone saying, "Oh, I've seen little green people," but they are logical in their thought process; they are just having an experience that I can't have. But their language isn't garbled, they aren't confused and restless, they are not irrational in their thought processes. They are present to who you are and often aware that what they're seeing is different from the normal experience of living. Once someone has withdrawn from food and fluids and started to do the visioning, they are getting much closer to dying.
Another thing that takes place is a change in the breathing.
That is one of the ways we know someone is getting closer to dying. The person goes into an irregular breathing pattern. Family members can get really upset when they see this, because they breathe, breathe, breathe, and then there is a pause in the breathing; then they will breathe, breathe, breathe, and then there is another pause in the breathing.
This pause can go anywhere from 10 seconds up to a minute and a half. It can be very disconcerting and people often think they have taken their last breath.
When they start this irregular breathing pattern, the family can kind of get on the edge of their chairs, wondering, "Is this the last breath?" It is very important to let people know they are not going to stop breathing during this irregular breathing pattern. This is a phase that they are going through.
It can last a couple of hours, it can last a couple of days, but they will move out of this into what we call a transition phase or terminal restlessness.
They will then move into a very deep, regular breathing pattern, and it is from this very regular breathing pattern that they will eventually stop breathing.