Bad fun on the night crew

So, I have a standing joke with one of the charge nurses who works night shift at the inpatient unit to which I am sometimes called. When I leave, and this nurse is charge, I always tell him I'm "off to Joe's (bar and grill, our imaginary local cheap bar)." I bring him greetings from the mythical Joe, and we talk about the price per pitcher of beer. He tells me how many pitchers I should drink for him. If we are with a patient who is up for it, we involve the patient in the joke. The other night, I had finished handling a death, and I told the charge nurse I was off to Joe's. A floor nurse, thinking I meant the nearby St. Joseph Hospital (called "Joe's" in the same way that the nearby St. Anthony Hospital is sometimes called "Holy Tony's By the Sea"), said he hadn't known I was on call for them. The charge and I corrected him. I said, "No, no, Joe's BAR AND GRILL." The charge nurse said, "We hang OUT together, at Joe's bar and grill." The floor nurse was flummoxed. Which, of course, made us more determined to be poker-faced. The charge nurse was actually getting off in an hour, so we talked about meeting up in an hour. I reminded the floor nurses I was still on call until morning and promised to stay relatively sober, and left them, laughing all the way to my car. It's hard to shock a crew of hospice nurses, especially a night crew, but hey, you have to have fun.

This particular night crew has lots of jokes. For some reason, a number of us have acquired imaginary names, with the last name "Suggs." I am "Reverend Suggs." Who knows why. I don't know that the managers quite know what to do with us, but that makes it even better. Since some of the more difficult deaths happen at nights or on weekends, when we have to lean on each other for support, shared jokes have a special importance... you really HAVE to laugh when a family wants an autopsy, and it's after hours, and there's no one there in the Pathology department of the nearest hospital to tell us what to do to arrange for the autopsy, and when we finally find the policy it doesn't say who pays to get the body to the hospital, and a family member says, "Well, we HAVE a van..." and all you can think of is the urban myth about the stolen station wagon with the deceased grandmother strapped to the luggage carrier.

(I should say that we got the body to the hospital without use of any private vehicle. The family negotiated a transport by the mortuary who was going to get their business for the final arrangements. One reason the family wanted the autopsy was because they suspected that hospice treatment, where we don't give IV fluids "just because we can," had resulted in death by starvation for their loved one. Our favorite mortuary driver arrived to transport the deceased to the hospital's morgue. He asked why the autopsy, and we explained we'd starved the patient to death, because we are just like that. He was nonplussed by the size of the body, the loved one having been a person of some stature. He complained, "I thought you starved this person to death, why's she so heavy?")

A public service announcement

Get those advance directives going! I have had an update on the law in my state, and, given that the update comes from a physician board certified in hospice and palliative care who has practiced for a long time here, it's well worth repeating.

Here's the thing: in my state, if you become incapacitated and do not either designate a medical durable power of attorney or leave advance directives, things get very complicated. What your doctors are required to do is contact those closest to you and ask them to name a party to act on your behalf. A consensus is not required, the physician explained, but an election is.

Think carefully about this. Are your closest relatives close at all? Is ANY of them a person you'd like to have acting on your behalf? Would you feel guilty imposing that responsibility on them? Or, in a darker scenario, is the one most likely to be elected the one least likely to know what you'd want? Family dynamics are complicated, I'm just saying.

And if you have no directives, no MDPOA, and no one can be found to act for you? DOCTORS will. Often, the doctors caring for you in this situation will be doctors who don't know you at all, and won't have (and shouldn't be expected to have) any idea what your values are and what you would want done for you.

Get to work on those directives. Attach them to your fridge with a magnet. Better yet, tattoo them on your body. In more than one place.

Oh coroner! My coroner! Or, the job market is bad, but still...

In the state and county where I work, the coroner's office must be notified of every death, and depending on a series of criteria, may be required to conduct a death investigation. Even for patients in hospice care, a death investigation may be required. One common reason for a death investigation is a fall or fracture in the days right before death, that precipitates the final decline. When hospice workers report the death (by paging a coroner's investigator; one is on call 7x24), the investigator may request certain information from the medical record, may come to the site to examine the body, interview the family, and review the records, and may elect to have the body transported to the coroner's facility for further investigation or autopsy. There was a death in a care facility one night, and the coroner's investigator requested transport of the body for investigation. Luckily, the family said their goodbyes and left the facility before the transport service arrived. I say luckily, because the transport service dispatched a driver who looked as if he'd been repairing a car when he got the call. He was a big burly young guy, dressed in work pants and jacket--I looked for his name in an oval patch on his jacket, but that detail was missing. He had a badly grown out crewcut, dirt under his fingernails, and bloodshot eyes. His cot squeaked badly as we walked to the room to retrieve the body. I told him he needed some WD-40, and he muttered something about a brake job. He then told me he hadn't been getting more than a few hours of sleep a night for weeks, because he'd been filling his brother's call shifts while his brother was on vacation, and that particular night (it was about 2 AM) he'd had only about an hour of sleep. "You're DRIVING?" I asked. "Yup," he said, "Hope I make it." I think if I were the deceased I'd sit right up in horror at that point, and plan to make my way to the coroner's on my own, but this deceased was apparently unconcerned and remained Very Quiet while loaded into the back of the van. I hope he made it, because you'd hate to be the family and hear that your loved one had been in an auto accident ON THE WAY TO THE MORGUE. Seriously, if I'd been a family member and this guy showed up to transport my loved one, I'd have declined permission, not that it might have done much good, since it was for the coroner's office. And, in any case the driver told me the back-up for his shift was HIS GRANDFATHER. Apparently the business is family-owned... Imagine making conversation on dates, saying you worked for your family's business DRIVING DEAD PEOPLE ON ONE HOUR OF SLEEP. This poor guy is doomed to remain single for a long, long time, I fear.

Don't even know what to name this one

I got a call once, to go to the scene of a death in the home hospice program. The home hospice program brings hospice care to a patient wherever the patient happens to reside. In this case, the patient lived in one of those retirement complexes that offers graduated levels of care, all the way from independent apartments through assisted living to a skilled nursing facility. These can be wonderful since residents don't have to completely leave their friends and support relationships when they find themselves in need of more care.

So I agreed to meet the hospice nurse at the complex. When I got there, I found a gentleman in white shirt, tie, slacks, sport jacket, wearing an ID that identified him as a chaplain from the complex itself. I hadn't known the complex had a chaplain or had called a chaplain; we introduced ourselves and the chaplain explained he lived in the apartments, was a retired pastor, and was one of the chaplains available to all the residents at the complex.

There are a number of clear advantages and wonderful possibilities about the arrangement this complex has, having retired pastors available for the spiritual needs of their fellow residents. Unfortunately, none of those advantages was in evidence in the situation I describe. This particular chaplain, while well-intentioned, was very hard of hearing, did not know the deceased or the family, and had a skill set that relied almost exclusively on saying prayers and reading Christian scripture.

The family, consisting of a heartbroken spouse and a number of supporting relatives, arrived at the scene. They'd been visiting the deceased most of the day and really had not expected death to come that evening, so they were shocked and regretful at having left, in addition to heartbroken over the death. The chaplain and I began to talk with them; it soon became apparent that the family was in no shape to cope with the repeated questions owing to the chaplain's hearing problems. (The spouse would introduce an adult child to the two of us, and the chaplain would then ask something like, "And what is the relationship between you two? Is she your daughter?") The chaplain optimistically mentioned prayers and scripture; a lot was going on at the moment but it did not escape my notice that the family, without a single exception, ignored the suggestion.

I had to meet with the hospice nurse briefly and on my return I noticed the family seemed even more restive. It devolved that the chaplain had announced he would take the family to view their loved one, and the family wasn't sure they wanted to do this at all, and REALLY didn't want to do this until one last family member arrived. I assured them there was no hurry and no rules, they could do exactly what they wanted. The chaplain interjected that now we would say prayers and read scripture. I caught a desperate glance from one family member. It seemed to say, "DO something about this man, or I can't promise I'll stay polite." I interjected that it didn't seem that prayers and scripture sounded comforting, and perhaps the family would just like to remember their loved one while waiting for that last person to arrive. The desperate one jumped on that suggestion as if it was a winning Powerball ticket, but of course the chaplain then asked, "Do you have a church?" It devolved that the family really is not religious at all. Fine by me. Finally the last relative arrived and the spouse wanted to go see the deceased. I said, "I can walk you back to the room so you can have some family time." The chaplain, perhaps not having heard, said, "I'll go with you." We marched ourselves to the room and I said, "If you need anything at all, I'll be in the lobby where we were sitting," and firmly closed the door, leaving the family inside and the chaplain and me in the hallway. I wish I'd had a brain in my head; if I had, I'd have invited him to come with me and tell me about his ministry. I didn't have a brain in my head, so he stationed himself roughly three inches from the door of the room.

Shortly after, the hospice nurse asked me to come back with her while she explained some logistics to the family. We went back, and to my horror, the room door was open and the chaplain inside. When we entered, I caught another desperate glance from the same family member who'd silently begged for help earlier... We said what we'd come to say; the chaplain was standing there with a look of impending prayers and scripture. This time I decided not to mince words. I asked the family if they'd like a little time alone, AS A FAMILY, and the desperate one leaped on the suggestion as if he'd seen a second winning Powerball ticket, and we escorted the chaplain out. This time, at last, he got the hint and decided he'd return to his own apartment, as long as the hospice nurse and I agreed to stay as long as the family might need us. We thanked him for coming, and I for one WATCHED HIM LEAVE. The nurse and I went back, I to the lobby and the nurse back to the nurse's station to handle the required procedures. The family took some time and then, assured that there was nothing at all that they needed to do, took their departure.

Encounters like this one are why a lot of folks are suspicious as can be about chaplains. A lot of folks have met "religious types" who aren't sensitive, who have a religious agenda, who insist on inserting themselves into a family in ways that are not helpful. There's a lot of baggage that goes with the word "chaplain" and all of these things are part of that baggage. To be sure there are families whose religious values match those of that chaplain who might have found his presence reassuring. Unfortunately, the family we were there to see was not such a family, and the chaplain did not have the ability to shift tactics to a different way of support. I am guessing that he also had a bit of judgment, a bit of feeling that the family "should" have religious values more like his, and a bit of hope that he could steer them in what felt to him like an appropriate direction. That might have been his job as a pastor, but it's not the work of chaplaincy, which is to be present to the family as they are, to offer what they need if you happen to have it, or find the right person if you can't do what they need. And a ministry of presence sometimes means having the sensitivity to realize that you need to get the h--l out of there and leave the family alone.

POA, POA, my kingdom for a POA

In health care settings we are always aware that we are encountering but a tiny slice of a patient's (and family's) life. We try our best to understand the person and family but sometimes the task is like trying to assess the overall health of a human body by looking at a single "slice" of a CT scan. You can see what's right in front of you but not what came before, except by inference. Sometimes things sort of make sense but other times something comes blasting into the situation as if from left field.

I am thinking of a patient who was admitted to hospice care. Six people were involved in the decision (the patient was in a coma and couldn't make decisions). Five of the six believed that hospice care was in their loved one's best interest. The sixth did not, wishing for continued aggressive treatment. Where I live, the law sets up a heirarchy of relatives in terms of their right to make decisions for an incapacitated patient. A spouse, for example, takes precedence over an adult child, who takes precedence over a parent, who takes precedence over an adult sibling, etc. This heirarchy, however, is trumped by a medical durable power of attorney (MDPOA). If an MDPOA exists, the person who holds the MDPOA is the authorized decision-maker for the incapacitated patient.

In most cases, even if one member of a family holds the MDPOA, that member consults with other family members and a consensus is reached. That's a good outcome, because the burden of making life-and-death decisions (like withdrawal of life support when a situation appears beyond recovery) is enormous upon whomever is tasked with the decisions. If the family is in agreement, the burden is shared, and the members of the family can support one another through the tough time.

Sometimes that doesn't work, and existing conflicts in the family come into play and get acted out around the end-of-life decisions. A family member who has historically felt disempowered may be vocal in opposing the care plan determined by the MDPOA, and that gets hairy, because the opposed family member often attempts to engage the caregiving staff against the MDPOA. The law is clear, however, that the right and responsibility to act for the patient rests with the MDPOA. So the opposed family member really cannot be allowed to determine the course of treatment, unless the MDPOA agrees. I have seen families where old sibling rivalries explode into fights over care of an incapacitated parent, and also seen families where old rivalries for a family member's affection produce agonizing conflict over who really was close enough to the person to understand their wishes, the law be damned. Often you can't figure out what the fight's actually about when it explodes. And when deep pre-existing conflict is at the bottom of the fight, you shouldn't put any money on the possibility of reconciliation any time soon.

In the family I'm thinking about, the patient was admitted to hospice, and five of six relatives agreed to make that choice. From the understanding of the hospice staff, no MDPOA existed, and among the five in agreement were several who are right at the top of the legal heirarchy. The one dissenting relative cannot overturn the choice, except--after several days of private and public stewing, the dissenting relative claimed to hold the patient's MDPOA. Yikes. That could change everything. If the relative were to produce a valid MDPOA, then it may be back to the drawing board, even though the incapacitated patient has apparently been pronounced incurable by a number of medical specialists.

It can be difficult to see where God is when the tempests are raging. The family member whose needs are most important would seem to be the incapacitated patient, who is unable to make or articulate decisions about care or quality of life. Of course, when families are in conflict, every person genuinely believes that she or he is representing the true desires of the incapacitated one, even if that belief is fueled by personal need. In the shock and anguish of a loved one's end of life, we all hear what we most want to hear, and so interventions from staff have to be both compassionate and very clear. Sometimes the chaplain's role as I've experienced it is to find a way to affirm all of the warring family members while letting go of any expectation of facilitating a resolution. Sometimes clarification (and re-clarification as needed) of facts is helpful, to give relatives in great pain the option of engaging a channel other than the emotional. Sometimes social workers are the best support, facilitating family meetings, arranging for physicians to answer medical questions, etc. But the desire for a miracle can captivate family and care staff as well. The family, or some members, may desire that God restore their loved one's health or that God would turn the hearts of those opposed to their point of view. The care staff may get caught by the desire that the family be united in peace, which in most cases would be as big a miracle as the healing of the patient. My own notion of chaplaincy is to model straightforward acceptance of the "as-isness" of the situation. I find myself saying things like, "You and your parent may never agree about this; you represent two genuinely different points of view," but also saying things like, "The story's not over; I know you feel completely at odds with (whomever) right now, but who knows what the future may hold." That, and trying to actually be in the room with the anger and tension and the cloud of unknown history, and hold each member tenderly. And remind other staff that the family's fight is not with us but with each other, and it's old.