There were two articles in the New York Times last week that spoke to some of the issues I face as a chaplain. The first dealt with issues surrounding the medical decisions people make. The author writes about the use of medical resources and the ways that patients are often persuaded or pressured to make medical decisions that may not be in their long term best interests. The other reported on delerium and hallucinations in elderly hospital patients.
When I meet with families we often address the issues of medical decisions they have made before they decide on hospice. There is the gentleman whose wife persuaded him to get a feeding tube "to give him the strength to try one more" kind of treatment. The treatment didn't work and now they're tied to a feeding tube that he never really wanted and she, and the children, no longer want in place. However there's little documentation that he acquiesced to the feeding tube "just for them." Even though there's plenty of documentation that this is not a treatment he would want given his current health, the doctor is uncomfortable removing the feeding tube. As in the New York Times article, there is the women with end stage dementia and a pacemaker. Instead of viewing her slowing heart as a natural part of reaching the end of life, it's viewed as a problem that needs to be fixed. There's the patient who is a "full code" and whose children don't want a DNR (a whole issue in and of itself.) Some patients and families say that the aggressive treatment was "right at the time," but now want it stopped. Others feel that it was never right but they felt they "had no choice."
And then there is the issue of hospitalization. In addition to the hallucinations and delerium that patients often face, there is also the fact that hospitals are not always the best choice for elderly patients. Often a nursing home can provide the care that one of their residents needs without the disruption and disorientation that comes with hospitalization. For patients with dementia, the unfamiliar surroundings and staff are especially disruptive. Patients who are mobile in their own homes, whether private homes, assisted living or nursing homes, are kept in bed or in a chair because they are a "fall risk." In addition, virtually every nursing home I've visited has stories of elderly patients sent out to the hospital with intact skin who return with skin breakdown and pressure sores.
Sometimes it seems that just because we can - insert a feeding tube or a pacemaker, send a resident out for specialized treatment, try an intervention that may be helpful - we think that we should. Sometimes the best thing we can do for a patient, a parent, a friend is to do nothing medically. Sometimes the best we can do is to look at the quality of life and provide the best quality we can for however long a person has. Medical intervention is not always the answer. We need to look at the whole patient, the whole family, not just a single symptom or two. We are more than our diseases, more than "the little old lady in bed A." All too often our health care system misses the person as it focuses on the disease.
Thursday, July 1, 2010
Wednesday, June 30, 2010
Unfinished business
Sometimes we have a patient who is declining, declining, declining, declining or actively dying, but, somehow, just keeps on going. We wait. We watch. We stand vigil. Well, really, we sit vigil.
At hospice rounds someone asks, "How is it that Mrs. S. is still with us?" or someone comments: "Mr. G. really needs to go to heaven."
We don't have an answer. As a chaplain, I get to say that matters of life and death are in God's hands, not ours. And I believe that. Because we really don't have an answer. Some people begin their process of active dying and are gone in a few hours or a day, or two. Others last and linger and fade and get more and more gaunt, but they don't die. It has nothing to do with medication. They can be on heavy doses of morphine to control their pain; they can be on minimal medication with no indications of pain.
We hold their hands. We play soothing music. We let them know that they are not alone. The family asks "when?" and "how long?" We don't have an answer. But sometimes we get a hint. Mrs. S. is talking to people we don't see. Mr. G. is apologizing for something, we don't know for what. One is calling out "I love you."
And we get a hint that there is some unfinished business; a lost connection, something that wasn't said or done, something that still holds them here while their body is doing everything it can to leave. Sometimes we help bring someone in and that is the business that is holding someone here. A lot of times, though, we don't know why someone is still here. Or "how long." So we sit vigil. And hold hands. And say "I love you." Sometimes that is enough.
At hospice rounds someone asks, "How is it that Mrs. S. is still with us?" or someone comments: "Mr. G. really needs to go to heaven."
We don't have an answer. As a chaplain, I get to say that matters of life and death are in God's hands, not ours. And I believe that. Because we really don't have an answer. Some people begin their process of active dying and are gone in a few hours or a day, or two. Others last and linger and fade and get more and more gaunt, but they don't die. It has nothing to do with medication. They can be on heavy doses of morphine to control their pain; they can be on minimal medication with no indications of pain.
We hold their hands. We play soothing music. We let them know that they are not alone. The family asks "when?" and "how long?" We don't have an answer. But sometimes we get a hint. Mrs. S. is talking to people we don't see. Mr. G. is apologizing for something, we don't know for what. One is calling out "I love you."
And we get a hint that there is some unfinished business; a lost connection, something that wasn't said or done, something that still holds them here while their body is doing everything it can to leave. Sometimes we help bring someone in and that is the business that is holding someone here. A lot of times, though, we don't know why someone is still here. Or "how long." So we sit vigil. And hold hands. And say "I love you." Sometimes that is enough.
Monday, June 21, 2010
you never know
I have a patient who doesn't initiate conversation, but will raise her head and look at me in response to her name. Many times she'll be praying "Hail Mary" in a barely audible voice. I will usually say a prayer while I'm with her. I'll talk with her or sit in silence if I run out of what to say or if she looks more tired than she usually does.
Today when I updated her daughter about my visit, she told me that she had visited her mother last week. My patient did not say a lot to her daughter, but when her daughter prayed with her and mentioned that she knew the hospice chaplain prayed with her my patient responded, "Chana." Later she told her daughter, "she's Jewish."
I knew she hears my prayers because she will often join with me. I didn't know that she knew my name, that she was aware that I don't share her faith, or that she remembered my visits. You never know when you're making a connection....
Today when I updated her daughter about my visit, she told me that she had visited her mother last week. My patient did not say a lot to her daughter, but when her daughter prayed with her and mentioned that she knew the hospice chaplain prayed with her my patient responded, "Chana." Later she told her daughter, "she's Jewish."
I knew she hears my prayers because she will often join with me. I didn't know that she knew my name, that she was aware that I don't share her faith, or that she remembered my visits. You never know when you're making a connection....
Tuesday, June 15, 2010
Tricks of the trade
It's easy to learn about being a chaplain. It's much harder becoming one. Applying book learning is difficult when you're sitting next to someone who doesn't respond and you're thinking, "O dear God, what do I do next?" Time seems to expand, minutes turning into hours, as you sit and think of every possible intervention. You try one. No response. You desperately try another. No response. A third. "How did the previous chaplain manage to spend 30 minutes with this person," you wonder. And then you start to learn the secrets and the tricks of the trade.
The hardest thing to learn is to do nothing. I learned it from some of my Christian colleagues - Ministry of Presence - or, as a friend explained it to me: "Don't just do something, stand there!" It's difficult to just be with someone; to stay in the moment. It's easy to have your mind wander. "What will I cook for dinner?" "Have I been here too long - what will the traffic be like when I leave?" But when I stay in the moment, I connect with patients. They know I'm there. That's one of the interesting things about dementia. A patient who can no longer talk can't be fooled by words, by a "chipper" tone of voice, by a fake smile. They read body language. They know if I'm not present. Often when I relax, they relax. When I really smile at them or laugh, they smile and laugh in return. We make a connection. In that connection, we transcend the boundaries of time. Instead of minutes turning into hours, time ceases to matter. We're just there, in the moment, together.
I've learned other "tricks" in my work. But the best, the most useful, and some days the hardest of all, is to just be there.
The hardest thing to learn is to do nothing. I learned it from some of my Christian colleagues - Ministry of Presence - or, as a friend explained it to me: "Don't just do something, stand there!" It's difficult to just be with someone; to stay in the moment. It's easy to have your mind wander. "What will I cook for dinner?" "Have I been here too long - what will the traffic be like when I leave?" But when I stay in the moment, I connect with patients. They know I'm there. That's one of the interesting things about dementia. A patient who can no longer talk can't be fooled by words, by a "chipper" tone of voice, by a fake smile. They read body language. They know if I'm not present. Often when I relax, they relax. When I really smile at them or laugh, they smile and laugh in return. We make a connection. In that connection, we transcend the boundaries of time. Instead of minutes turning into hours, time ceases to matter. We're just there, in the moment, together.
I've learned other "tricks" in my work. But the best, the most useful, and some days the hardest of all, is to just be there.
Sunday, June 13, 2010
"Can you hear?"
I was sitting with a new patient as part of my initial assessment. The following conversation took place:
Patient to me: "Can you hear?"
Me, puzzled: "Yes?"
Patient: "What do you hear?"
Me, listening intently: "I hear a machine running on the other side of the room."
Silence.
More silence.
Then I asked: "What do you hear?"
Patient: "Voices."
No answer as to what the voices were saying. I sat silently while my patient looked off in the distance and continued to listen.
Patient to me: "Can you hear?"
Me, puzzled: "Yes?"
Patient: "What do you hear?"
Me, listening intently: "I hear a machine running on the other side of the room."
Silence.
More silence.
Then I asked: "What do you hear?"
Patient: "Voices."
No answer as to what the voices were saying. I sat silently while my patient looked off in the distance and continued to listen.
Friday, June 11, 2010
"I'm going to put on my dress and go dancing."
A lot of time when people talk about memory loss and Alzheimer's or other forms of dementia, they talk about losing your memory backwards - losing what is most recent first and holding on to earliest memories the longest. We usually use this simple explanation to talk about short term and long term memory. But when we do this, we often ignore the fact that there are many types of memory (or many components to a single memory.) There is body memory, sense memory or emotional memory, working memory, episodic memory and more.
As I continue to work with this population, I keep reading and learning about memory. Two books that I found very helpful are John Zeisel's I'm Still Here and Forget Memory: Creating Better Lives for People with Dementia by Anne Davis Basting. But book learning only takes you so far. Much more of my learning is experiential and comes from spending time with my patients.
Every time I think I understand dementia, I have an encounter with someone that teaches me that I only know a little bit. I meet a woman and say, "It's nice to meet you." She responds, "I'm happy to meet you." This is going well, I think, and I continue, "My name is Chana Sorel." She says, "Chana. That's a nice pumpkin. I go walking. My stone is my daughter, my friend. And you? Who did the plant go?" And she continues. It sounds like speech. There are words I recognize. She looks like what she's saying makes perfect sense. And I have no clue. So I respond to the tone or to a word or phrase that maybe makes sense to me. And she smiles. And I smile. And we talk. Finally I say, "Thank you for talking with me. May I come visit you again?" And she says, "It was nice to meet you." Her social memory is intact (at least in the moment) even if her words are incomprehensible.
One woman's words are clear, but not responsive. "Hello. I'm pleased to meet you," I say. "Oh," she says. "You play the piano? Play something for us." And I'm dumbstruck, without a response.
Someone else mostly hums. Some days she says a word or two, or she laughs. I start singing "Michael Row the Boat Ashore" and suddenly she's humming "Michael Row the Boat Ashore." I search my brain for every song I know that might get a response. Soon the whole room is singing. Other patients are asking, "What are we going to sing next?" And my patient is humming along to every song we sing.
I walk by a room and a gentleman has a sewing machine. In other room a woman pulls out her knitting and another crochets an afghan just like dozens she has already made for her children and grandchildren. The commonality: they all have dementia. And they are all human beings making connections with us any way they can.
As I visit with a woman, she looks down the hall at something only she sees and says, "I'm going to put on my dress and go dancing." I hope when my turn comes I'll be going dancing too.
As I continue to work with this population, I keep reading and learning about memory. Two books that I found very helpful are John Zeisel's I'm Still Here and Forget Memory: Creating Better Lives for People with Dementia by Anne Davis Basting. But book learning only takes you so far. Much more of my learning is experiential and comes from spending time with my patients.
Every time I think I understand dementia, I have an encounter with someone that teaches me that I only know a little bit. I meet a woman and say, "It's nice to meet you." She responds, "I'm happy to meet you." This is going well, I think, and I continue, "My name is Chana Sorel." She says, "Chana. That's a nice pumpkin. I go walking. My stone is my daughter, my friend. And you? Who did the plant go?" And she continues. It sounds like speech. There are words I recognize. She looks like what she's saying makes perfect sense. And I have no clue. So I respond to the tone or to a word or phrase that maybe makes sense to me. And she smiles. And I smile. And we talk. Finally I say, "Thank you for talking with me. May I come visit you again?" And she says, "It was nice to meet you." Her social memory is intact (at least in the moment) even if her words are incomprehensible.
One woman's words are clear, but not responsive. "Hello. I'm pleased to meet you," I say. "Oh," she says. "You play the piano? Play something for us." And I'm dumbstruck, without a response.
Someone else mostly hums. Some days she says a word or two, or she laughs. I start singing "Michael Row the Boat Ashore" and suddenly she's humming "Michael Row the Boat Ashore." I search my brain for every song I know that might get a response. Soon the whole room is singing. Other patients are asking, "What are we going to sing next?" And my patient is humming along to every song we sing.
I walk by a room and a gentleman has a sewing machine. In other room a woman pulls out her knitting and another crochets an afghan just like dozens she has already made for her children and grandchildren. The commonality: they all have dementia. And they are all human beings making connections with us any way they can.
As I visit with a woman, she looks down the hall at something only she sees and says, "I'm going to put on my dress and go dancing." I hope when my turn comes I'll be going dancing too.
Monday, June 7, 2010
Easy to love
Referring to patients as "cute" is not politically correct. Some people will talk about how "cute" is demeaning or patronizing. I understand this, I really do. And yet I do have patients who I think are cute. There is the woman who, when I sit down to spend time with her, grabs my hand and kisses it. As she's doing this, she says "I love you, honest to God I do." And I respond, "I love you too." Her affection, her demeanor, her attitude brightens my day. I know she has dementia; that she doesn't remember that I've visited before. I know she tells other people she loves them and I know she makes fun of other people - probably of me too when I go to visit someone else. But I love to visit her. And she thinks I'm cute.
I stop in to see a gentleman and ask, "How are you today?" He responds, "I'll show you," and gets up and does a little dance. Out of breath, he sits back down and gives me a big smile. I visit someone else, begin to tell her who I am, and before I finish my introduction she says, "Oh, I know you. You gave me my rosary." Later she says, "I always feel uplifted when you come to see me."
Perhaps they're not "cute." Maybe they're just easy to love. I'm the one whose day is uplifted, who feels loved, who gets to laugh and dance and sing when I visit them.
As I was visiting one of my sweetest, "cutest" patients today, I thought about what it means to be cute. Maybe, as with babies, it's an adaptive advantage to be cute when you're old. It's not fun to become frail and dependent. If we see someone as "cute," we can push away for a moment our own fears of aging and dying and really be there, be present, for our patient. With babies, the cute outweighs the "ick" factor. With babies we get to watch them change and grow and learn - and we know that "frail" and "helpless" and "dependent" are just for right now. At the other end of life, however, we watch people change and forget and need more and more assistance. It gets harder and harder for the family. While it, too, may be just for right now, when the "right now" is over we've lost someone we loved. Or, with dementia, we lose the one we love over and over again, piece by piece. Is it easier when that person is "sweet" or "cute?" I don't really think so. But if "cute" gets you in the room, if it means you come again and again to visit, and enables you to see the essence, the soul, of the person you are with, maybe it's not so bad.
I stop in to see a gentleman and ask, "How are you today?" He responds, "I'll show you," and gets up and does a little dance. Out of breath, he sits back down and gives me a big smile. I visit someone else, begin to tell her who I am, and before I finish my introduction she says, "Oh, I know you. You gave me my rosary." Later she says, "I always feel uplifted when you come to see me."
Perhaps they're not "cute." Maybe they're just easy to love. I'm the one whose day is uplifted, who feels loved, who gets to laugh and dance and sing when I visit them.
As I was visiting one of my sweetest, "cutest" patients today, I thought about what it means to be cute. Maybe, as with babies, it's an adaptive advantage to be cute when you're old. It's not fun to become frail and dependent. If we see someone as "cute," we can push away for a moment our own fears of aging and dying and really be there, be present, for our patient. With babies, the cute outweighs the "ick" factor. With babies we get to watch them change and grow and learn - and we know that "frail" and "helpless" and "dependent" are just for right now. At the other end of life, however, we watch people change and forget and need more and more assistance. It gets harder and harder for the family. While it, too, may be just for right now, when the "right now" is over we've lost someone we loved. Or, with dementia, we lose the one we love over and over again, piece by piece. Is it easier when that person is "sweet" or "cute?" I don't really think so. But if "cute" gets you in the room, if it means you come again and again to visit, and enables you to see the essence, the soul, of the person you are with, maybe it's not so bad.
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