"The Next Holiday is:"

I usually wear a watch that tells me the date. I don't need to do so - my work phone also tells me the date as does my personal cell phone. And most of the time I know the date. Despite this, every time I write a visit note, or sit down to write a group of notes, I look at my watch or the unit calendar for the date.

I do this even though virtually every nursing home unit I visit has some variation of the same sign, telling me the date:

Today is: Monday   May 16, 2011

The weather is: cold  rainy

The season is:  Spring

The next holiday is:  _________

It's "The next holiday is" part of the sign that amuses me. I don't know if it is dependent on the placards that come with the sign, the calendar that the staff look at, their knowledge of holidays, random chance, or just personal whims, but "the next holiday" is not always consistent.

Last month I was on one unit and "the next holiday" was Easter. I went upstairs and in another unit, in the same building, "the next holiday" was Passover. The next day I was in a different nursing home and "the next holiday" was Good Friday.

This week I have seen "the next holiday" as Armed Forces Day (May 21) and Memorial Day (May 30.) (I don't expect that I will see Shavuot, nor is any nursing home I visit counting the Omer. ) Right after Memorial Day, the signs will battle between Flag Day and Father's Day. They'll then stay consistent with The Fourth of July and then Labor Day, but come the Jewish Holy Days, Columbus Day, and various other fall holidays, "the next holiday" will again differ from place to place and unit to unit.

Perhaps this is why I need my watch. It doesn't focus on "the next holiday" but just on a number between 1 - 31. And most of the time the number it tells me really is that day's date.

"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.

Oops

This week I was the one who broke one of the big nursing home "rules." I was the visitor who let a resident leave a locked unit.

I was covering for a colleague, visiting a dying patient in a nursing home that I don't normally cover. Although I used to be a chaplain in the building, I'm not the chaplain now so I'm not familiar with the residents; I only know the staff. As I was leaving the floor, I caught up to a gentleman who had just reached the elevator. I looked at him as I fumbled around trying to figure out how the elevator worked. (It used to have a nice covering over the "down" button so you had to use your keys or a pen through the grill to press the button. Now there is a full covering and a small metal piece on a chain that "locks" it in place. You have to pull out the metal piece, lift the cover and press the button, then close the cover and replace the metal piece. I got the metal piece out, but didn't know to lift the cover, so I was jabbing the metal piece every which way until I figured it out.)

While wondering if I was going to have to go to the nurse's station and get help with elevator instructions, I assessed the gentleman. He wore nice trousers and a long-sleeved white button-down shirt. He was shaved and his hair was combed. There was no noticeable wristband or ankle bracelet. There was minimal conversation, but we didn't know each other. Resident or family member? There was no way to tell. I've met a lot of men his age who come daily or twice a day to visit their wives on the dementia unit and he looked more put together than many of them.

So when he got into the elevator with me, I didn't ask if he was supposed to be there. (There's really no polite way - "Excuse me. Do you have dementia?" "Are you allowed off the floor?") But there must have been something, because when I got off the elevator I thought, "I should check with a staff member."

There was no need. Almost immediately a staff member assisting another resident looked at him and asked, "'Bob.' What are you doing here?" Another came and gently took his arm, "Here, let's go this way." And another, "What's 'Bob' doing off the floor?"

Today, when I again visited that nursing home, I was greeted (among other things) with, "I hear you let 'Bob' off the floor yesterday." I apologized. They laughed. I have the feeling that this happens often with 'Bob.'

In many of the nursing homes I visit there's a resident who doesn't quite seem to belong on the floor. Someone who is still walking around; someone who remembers the social graces and can provide polite chit-chat. Perhaps it's someone who is no longer safe living alone. Or a person whose family can no longer provide the amount of care they need. I've met many family members, especially spouses, who have run their own health into the ground while caring for a loved one with dementia, until the needs become too great and a nursing home or assisted living is the best option.

And I've met residents who ask me to "get me out of here." One wants me to gather up her medical records "RIGHT NOW" because she has "a medical appointment and needs the doctor to see" that she doesn't "belong on an Alzheimer's floor." Another wants me to call her lawyer. "You can see that I should be living on my own. My daughter put me here. She sold my car. She lives in the South. I have a cousin who will help me. I just need you to call." I always talk to the staff. Again and again I speak with residents (not my patients) who present well and just want my help to "go home." I know that they are no longer capable of caring for themselves (and I've asked.) I know some of the stories. And it breaks my heart that I can't help them (and that they can't remember that I can't help them, so they repeat the request the next time they see me and the next.) Some days the hardest part of my job isn't the hospice patients.

But the next time I'm waiting for the elevator (or struggling to circumvent the lock that keeps the residents in,) I'm going to take a second and a third look at those people who are waiting with me!

Happy . . . Hanukah ? ?

One of the residents at a facility I visit is always happy to see me. "I love you, I love you," she has told me. She met me when I was her brother's hospice chaplain in the the same facility. I am grateful that she doesn't connect me with her loss or see me as a reminder of her sorrow.

Initially she recognized me by my kipah, now she recognizes me as me. Whenever she sees me, she gives me the appropriate Jewish greeting (or at least the Jewish greeting she knows.) "Happy Hanukah," she says. "Happy Hanukah." I thank her.

I saw her last week, just before Rosh HaShanah. She wished me a "Happy Hanukah."

I couldn't help noticing that the local Chabad has their hanukiya fully lit for their New Year observances. Perhaps she's right: it's always hanukah somewhere.

The State

One of the big concerns in nursing homes is the visit from The State. Periodically (I have no idea how often) the Department of Public Health (DPH) comes in and surveys the records, charts, and files. The goal of the nursing home is to have a survey with no deficiencies.

Ideally, all of us want to give good care. We want to be attentive to our patients' needs, caring in our interactions, manage pain, prevent falls, etc. And, of course, we want to document that we have done all of this without making every visit note sound like every other visit note. We want to individualize the care we give, even when our care plan forms don't always give us enough choice in our check boxes to show that we're doing so.

Some days it feels as though all we do is check off boxes and write narratives. Some days it feels as though we spend more time documenting what we do than doing what we do.

Yesterday, I was "snagged" by The State. As I was leaving a nursing home, a DPH worker stopped me to ask some questions. After telling her I was an outside provider, and thus ensuring that they knew there were hospice patients in the building, she asked a few questions about our patients. One of the things DPH looks at is coordination of care. Does the nursing home staff talk to the hospice staff? Do we collaborate on the care plan? Do we work in coordination or in competition?

While internally hoping that I had checked all the appropriate boxes on my forms and that my narratives were complete, I was pleased to be able to talk a bit about this nursing home. Not just because we do coordinate care, but because the staff in this nursing home are caring and attentive. They give superb care to some very challenging patients. It is one of my favorite places to visit. It was nice to be able to share this outside the circle of my co-workers (who feel the same way) and beyond the nursing home staff (whom we have also told how much we enjoy coming to their facility.)

Still, the next time DPH is in one of the facilities I serve, I hope I slip though the building without their notice.