A Conversation with Nancy Telos, Chaplain

Q: When I first heard the term "chaplain" I thought of a minister, but your job is different.

Nancy: Most people carry a notion that chaplain is associated with clergy which is associated with some particular faith. Chaplain training is just the opposite of that. It's how to sort out all of your preconceived religious or spiritual notions and leave them at the door. To be with that person where they're at. Not very many chaplains are clergy–perhaps only half. So hospice and hospital chaplaincy is about helping people with the spiritual issues related to health care problems. It's about end of life issues. It's about withdraw of treatment.

Q: What type of care or counseling do you provide?

In general there's three levels of pastoral care. There's hospitality. For some people, all they want is somebody to visit with or pass the time or talk about their life. Then there's pastoral care, which is talking about things related to their religion–questions, prayer, support for their family. Pastoral counseling is the third aspect, which gets into issues of doubt and fear, forgiveness and reconciliation. It's often when you get into issues around what's the meaning of an illness. Why me? Often there's a sense of injustice, unfairness, or fear about what dying will be like–which is usually about pain and disfigurement and loss of dignity and freedom or fear about what death is and what comes after that. It's about the loss of everything about who you thought you were. First your body image goes, you may lose your hair. The ability to walk to the bathroom goes. Your mental capacities may fade. At some point you can't go to work anymore, so you're not productive in the way you thought you were. You can't take care of your children. So all your roles: husband, wife, mother, sister, brother-all that starts to go. Who are you then? That's terrifying to most people.

Another aspect of pastoral counseling deals with forgiveness and reconciliation issues or issues around anger. It's not at all unusual to be angry, and particularly to be angry at God. It's sometime at that point that chaplains are handy because people maybe reluctant to talk about that anger with family or friends or their bishop or priest or rabbi. So hospice chaplaincy helps people look at those kind of issues. If they want to. Again, the patient controls what degree they want to go to, down to people who say "no thank you" and then you don't go in at all.

Q: When you meet a patient for the first time, when you walk into a home, what are you looking for?

Nancy: I'm first and foremost trying to get a feel for what level of interaction with me they want. Do they want hospitality? And that's evident usually right away because it doesn't take much if somebody wants to talk. I may ask a simple question like, "Do you have a religious preference here and have they been contacted?" and that may lead to a whole pocketful of things. We can inform, if they don't already know, your bishop or your priest or your rabbi or your pastor about hospice and what we do and help them help you. And then it goes from there into whatever other levels of care that the patient might want. If they want to look at their life, if they've got issues around the illness. If they're angry at the medical profession. If they feel like people gave up on them. If they have fears about dying. If they don't want to die, but they feel the relentlessness of what's happening to their body, how to help them with that. So the job for me is to let them tell me and show me what they want. And my job then is to help them find out from within themselves what their answers or solutions are. So actually my job is to be as empty as possible.

Q: Tell me about the different phases. What are some of the emotions people go through?

Nancy: Well there are psychological phases as they come to each level of loss. But the each individual experience is unique. Bargaining and denial often come at the beginning. Denial is just "No, I don't have this." If they're in denial, people might say, "That's somebody else's lab test or x-ray" or "They made a mistake in the lab and that wasn't my biopsy." If they're bargaining, they'll think,"If I pray without ceasing ,or if I eat this and don't eat that, I can get a handle on it." All of which are worthy things to do because they might work. I mean, there are people who go off hospice at least for a time. We're all ultimately hospice material.

Other emotions include depression and anger. Anger can be at the messenger-whoever gave you this news. It can be at cancer or clogged blood vessels. It can be at God. It can be at who ever is standing next to you right at the moment. And I think it comes a lot out of that sense of injustice. And I think anger usually comes out of pain or fear–often fear of pain. So you get mad. Anger generates energy and helps carry you for a little while until you can deal more directly with what underlies it. Acceptance is another phase, and I still see as primarily a psychological phase, where you say, "okay, this is my biopsy. This is my x-ray. This is my fate. I've done chemotherapy, I've had surgery or procedures and this is what I've got to deal with."

I think there are some stages that are just beginning to be talked about in this country. And that I think it begins with what we talked about a little bit ago which is that sense of loss of personal identity–chunk by chunk. You're stripped away until there's only the bare essential self left. The self that doesn't directly have to do with any of these outer roles of who we thought we were: mother, father, provider...but is expressed through them.

Q: Is there a final phase? Are there common experiences at the very end of life?

Nancy: People enter a phase usually within the last couple of weeks of their life, where they often begin to have experiences of other beings. They may call them angels or they maybe relatives who have died. They may have experiences of light or bliss. Sometimes fear is present. And they begin to go into a transition where they're here but they also have a lot of experiences-sometimes conversations and visions-of something else that is not necessarily readily apparent to others in the room. A lot of times they speak of very specific things about the people they're seeing, and the patient will then transmit that information on to their family. These are often called kind of classic hospice stories because they are so extraordinary. Someone who's been almost comatose will suddenly sit up and be completely animated and completely lucid and say, "Uncle Harry told me to tell you..." and then they go back down into a comatose state. And that sort of experience is common regardless of religion, or even if someone considers themselves having a set of beliefs.

At some point patients need to go through some level of withdrawal. And how easy or difficult that is has a great deal to do with the caregivers. Caregivers can allow and recognize that the patient needs to get themselves established in, if you will, another kind of life-that they need to drift away and then they can come back. Sometimes they often do come back for twenty minutes or two hours or a day, and they'll be very alive for that family. And then often they die within a day or two after that. So there's a definite phase there, a transitional phase which includes a withdrawal period.

Withdrawal is important because it must be, at least in my imagination, extraordinarily difficult to say good-bye to everything. You know, the smell of bacon cooking or fall or spring or your family, yourself. Smells, sights, sounds, tastes. You name it. And that's very difficult to do when people want so much from you while you're dying. Which most people do. They want those last moments. A lot of families want to be right there when someone's dying. They want to be holding their hands. And I would say probably a little less than half the people cannot die when their loved ones are right there. My personal theory about that is that they can't hurt you that way so they wait until you go to the bathroom or you go outside to smoke a cigarette or something like that and they're gone. Just like that.

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