Too soon

One of my patients died last week. On the face of it, there's nothing novel about that sentence. I could probably begin a posting every week with those words.

Some losses, though, are harder than others. When you share someone's life for six months, learning her history, listening to her stories, reluctantly leaving her to visit another patient; when the music she loved plays unexpectedly on your ipod and you remember her tears as she sang along, it's hard to let go.

It's also hard remembering the most recent visits. She asked, "Am I going to die?" I answered and we both had tears in our eyes. "I never thought I'd die," she said.

I've thought about that visit a lot lately. Obviously, a patient on hospice knows her prognosis, as do her nurses, her aides, her social workers and chaplains.

Any one of us can, on any day, acknowledge that one day we too will die. But her words ring so true. I know that one day I will die, but I imagine it far off in the future. And when that day comes, it will probably seem too soon to me, no matter how old I am. And I expect that, if you ask me, I too would say, as she did, "I never thought I'd die."

May her memory be a blessing.

"Tell me in small words."

I was following up on a hospice referral this week and the nursing home staff told me that there was just one problem - the patient didn't have a payer source. "What?" I said. "There's no payer source." "I'm a chaplain. Tell me in small words," I replied.  Once they finished laughing, they explained to me how this patient with an insurance company managed Medicare plan couldn't access benefits that general Medicare recipients have. It was one of several long, convoluted, and frustrating conversations I had around the issue.

Putting aside my personal feelings about this company and this issue, it occurred to me that there is a real benefit in getting and giving explanations "in small words." Hospice has a lot of jargon, as does health care in general. Those of us who work in any part of it become familiar with the lingo. At this point I can talk about "scheduled" medication vs PRN medication with the best of them. I know the medications we generally use and I usually understand what our nurses are talking about. When I have a patient in pain I know how  to talk with a nursing home med nurse.

But when talking with our nurses and, especially, when talking with patients and families, I tend to use small words. I talk about a patient being "short of breath." I don't say he has "dyspnea." I talk about someone losing weight and "appearing gaunt" rather than saying she's "cachectic." I will mention apnea to families, but I always describe what that means and talk about what they will observe when a dying person has apnea.

I've also realized that I try to describe medical end-of-life issues in concrete everyday terms. For an actively dying patient with a fever that isn't responding to medication, I talk about the "body's thermostat" which is no longer working. For other questions I may talk about the "body's electric system." It isn't necessarily how a nurse would describe end-of-life medical issues, but the metaphors are the ones that work for me in understanding what happens as the body ceases to function. They also seem to be metaphors that help families understand what is happening.

I know lots of "big words," but I am convinced that sometimes the simplest, smallest words are the best way we can communicate. I'm going to keep the sentence "tell me in small words" in mind as I work with families in the hope that by using "small words" we will better understand and communicate with each other.

Again with the shofar

I had the shofar with me today. A Jewish patient who was not inclined to hear it a few weeks ago - he had other things on his mind that day, and didn't recognize the shofar - said "yes," he'd enjoy hearing it. So I let everyone around know what I would be doing and then blew a mighty "tekiya."

"You shouldn't do that when you're crossing the street," he told me. "Too many people might get hurt."

The unexpected . . . or what teenagers taught me about conversation

Some days hospice work bears a certain resemblance to working with teenagers. Anyone who has worked with (or had) teenagers knows that some of the best conversations you have are the ones that take place in the car. Whether it's the forced intimacy or the lack of eye contact, or just serendipity, a car ride can turn into an unexpected opportunity for sharing. Something special can take place in that moment. You can't plan for it or expect it or extend it. You can only experience it and give thanks for it.

Some days you have moments like that in hospice. Again, you can't plan it and you can't force it. And just because you had that special moment once with a patient or family, you can't expect it to happen again.

Much like moments in the car, some of these moments happen when I am not looking at my patient. This week I was sitting with a patient who does not talk a lot. He does like it, however, when the social worker or I sit quietly next to him and do our paperwork. He likes the company and the companionship.

The other day I sat next to him with a big afghan on my lap. The afghan belonged to another patient. It had been lost and then found in the laundry by a facility CNA. The yarn had broken in some places, been pulled out in others, and had open stitches that were unraveling. I had told the CNA that I would try to fix it. (Fortunately I usually carry knitting and had both a crochet hook and a yarn needle in my car.)

So I sat next to my patient and focused my attention on the yarn and the open stitches. I don't know whether it was my attention to the task, my awareness of some of his issues and concerns, or my thoughts focusing on Elul,  but as I talked with him about what I was doing it turned into one of those unplanned, special moments.

I commented that it could be a challenging task to try to fix something that had been torn or broken. "Yes," he said. I sewed some more and said, "I know I can't make this perfect, but at least I can mend some of the holes and keep it from getting worse." He agreed. Although he's not much of a talker, I realized he was very focused on my words and actions. So I continued to mend the afghan and talk about repairing the things we could, letting go of the things we couldn't, and forgiving ourselves for not being perfect. He would listen, make a tiny comment or a sound of acknowledgment. This continued until there was no more yarn to reattach.

I know that I got a great deal out of this unexpected moment and conversation. I think that he did as well, for I have an invitation to visit again . . . and to bring my knitting.

Sitting & knitting

We have a new patient. She's in her 90's. The family says she's "given up," she's "ready to go." The family is clearly not ready to let her go. They're willing to talk hospice, but they are hoping that the extra attention and services will tip her back on the side of living. I ask about volunteers. "She knits," they say. "Do you have someone who could come knit with her and maybe also pick up the stitches she drops?" "I knit," I say. "I'll see what I can do."

At my initial, and as it turns out, only, visit with the patient, she's curled up in the middle of her bed with the covers pulled up to the top of her head. She doesn't respond to my greeting or presence. So I sit down next to the bed, pull out my knitting, and knit. Eventually she says a word or two. As I sit there, a younger woman comes in. She's the daughter of another resident, a friend of my patient, a knitting companion. The younger woman and I talk about knitting. And then a voice comes from under the covers: "I think I'm dying."

Before I can even open my mouth to respond, possibly faster than the speed of light, the other woman says, "Oh no. You're not dying. You just need to eat more." My thoughts are unprintable. Eventually the other woman leaves. I continue to knit. And knit.

Finally I say, "So you think you're dying. What makes you think that?" She says, "I just don't feel well." She's silent and I knit some more.

Finally she says, "Am I dying?" I take a deep breath. "Everyone dies sooner or later . . . I think for you it will be sooner. You're not eating and you tell me that you just don't feel well." More silence. I've answered her question. I've told her what she needs to hear. She doesn't say anything else.

And a few days later she dies.

Where did you get your faith?

One of my patients and I were talking about faith today. He was born Catholic but no longer practices. He had told our nurse that he believed in God and would be happy to have me visit. He's not much for talking - he told me that and told me that his voice was wearing out from talking with me (and there really wasn't that much talking.) Then he asked, "Where did you get your faith?"

Wow. I needed to think about that one. Where did I get my faith? I got it in part from my parents who joined a synagogue and sent me to religious school. I got it in part because I looked around at how the world works and knew there must have been something (someone) who created it. That was about as much as I could come up with during the visit. We talked a bit more - about people whose faith teaches them that there will be a reward after this world, about my belief that what's important is not whatever comes next but what we do here. He was tired, so I asked if we could talk about this more at our next visit. He agreed.

Before I could write a visit note or even begin to process the visit, my phone rang. I was needed somewhere else -- 50 + miles away.

I love driving. It gives me time to think, to ruminate, to dream. I've been known to miss a turn I know well because I'm mentally writing a sermon (or now a blog post) while I drive. So, with 50 + miles of highway I had plenty of time to think about where I got my faith. The more I thought, the more I think that my first answer -- my synagogue -- was more true than I realized. I don't remember a lot of details about what I learned in Sunday School, but I remember some formative experiences there. In sixth or seventh grade we studied comparative religion. At the end of the course, we had to write an evaluation. I wrote that we should have had teachers or guest speakers from the different faiths, because the teacher, Mr. H., "couldn't answer all my questions." Mr. H. wrote in reply, "God Himself couldn't answer all Chana's questions." It was in my synagogue and youth group that I learned I could ask as many questions as I wanted and that there were a lot of texts that spoke to my concerns. It was in my synagogue that I found a community, teachers, rabbis, mentors. It was through the synagogue that I went on to advanced Jewish learning and had pivotal experiences, including significant time spent in Israel.

Where did I get my faith? I got it from Jewish texts, from Jewish experiences, from friends, and from my rabbis. I get it through the work I do and the people I meet. And today I was reminded that in the work I do, I get so much more than I give.

"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.