Whoa

When I work shifts in the hospital, I respond to certain overhead pages--codes, of course, and then various "Alerts." A fairly common alert is a Cardiac Alert, which is sounded when a patient displays a suite of medical indicators that suggest the ticker is not ticking as it should. A Cardiac Alert generates a team of individuals who gather at the patient's bedside--portable X-ray, portable EKG, lab, nursing, a cardiologist, and a hapless chaplain, whose job is generally that of escorting the patient's family and friends to the appropriate waiting room. Cardiac alerts sometimes are called in the emergency department even before the patient arrives, which causes the assembled team to stand inside the ambulance entrance like some demented Welcome Wagon group. I feel at a loss there, with no machine or basket of tubes or white coat. I have to bite my tongue to keep from saying, "Welcome to XYZ Hospital. Would you like coffee, tea, or an angioplasty?"

One day a husband and wife were in the emergency department because the husband had been taken ill. They were in a room, a doctor had seen them, he was feeling a bit better, and they were watching TV and waiting patiently. Over the loudspeaker they heard the page: "Cardiac alert; emergency department; room 7. Cardiac alert; emergency department; room 7." The husband said, "Gosh, someone here must be REALLY sick." They took a moment to hope the person would pull through. Then the husband wondered, "Is this happening near us? What room are WE in?" The wife stepped out to look at their room number. "Uh... We're in room...7..." Seconds later the cardiac alert team burst into their room. I would imagine that if he wasn't having a heart attack before he had one then. Truly he had no idea; whatever the doctor had said to them, they didn't see this (us) coming.

He DID pull through, and what a story for the grandkids.

Sometimes marketing baffles me

So there is an Exceptionally Distressing condition that impacts the male of our species, and within the last decade a number of products have become widely available to treat said condition. Apparently the condition is so Excessively Disturbing that the market for such products is great. I expect anyone who has ever had an email account has received spam offering these pharmaceutical products for sale. I am no exception, even though I am the wrong gender to find these products beneficial. (Indeed, I should say that if men affected by the condition relied upon female counterparts to purchase the products sales might well go down.) I noticed, around about the third week of November, a rather drastic increase in the number of emails in my spam folder, and upon looking further, I noticed that the drastic increase was solely accounted for by sales offers for products to treat the Extremely Devastating condition. I pondered this. I haven't changed gender or social activity level, so I began to wonder if the increase was related to the holiday season. Does the condition occur with greater frequency over the holidays, so that sellers are trying to strike while the iron is hot? (or not, as it happens...) Or, does the condition occur with less frequency, so that sellers have overstock they wish to unload? I cannot imagine. The trend has continued, past Christmas, past New Year's, past Epiphany. I'll see if it tapers off after Candlemas, but the approach of Valentine's Day may signal a continued barrage of spam. One determined spammer sends roughly three identical posts a day despite receiving no response whatsoever from my email address. This must be at least a mildly lucrative business given the level of email blitz which, while cheap, is not completely free. I wonder if the products being marketed by the spammers are even real. So often they are not. My favorite spammers send me offers for GENUINE Rolex replicas. Why have a FAKE fake Rolex if you can have a REAL fake Rolex?

I suspect I will never know why my spam folder has gotten so overloaded with products for the Eternally Depressing condition. I suppose it could be worse, but I really DON'T need to know how. Give me a good GENUINE Rolex replica any time!

Clusters of Bad Luck

I know that it is easy to see "patterns" that are actually meaningless. That said, sometimes it appears as if, in our hospice program, certain diagnoses come in bunches. It will seem to me in some weeks that every other patient has pancreatic cancer, or end-stage coronary disease, or lung disease, or something. Perhaps there is some store where the Grim Reaper shops that offers half off on overstocked terminal conditions. A blue light special on anoxic brain injuries?

Sometimes it seems as if the kinds of complicating bad luck that families experience come in clusters as well. We may have several families in our program that have experienced multiple losses in the last couple years, or that have out of town loved ones trying like crazy to make it to see the patient in time, or that have other really sick loved ones to care for. We've had weeks where it seems that every other family has a family member who copes by using alcohol in ways that complicate the whole family's efforts. Not surprising given that we live in a culture where advertising would make us think that alcohol makes us better, stronger, and more attractive. Unfortunately using large amounts of a depressant to cope with depressing reality generally makes things worse rather than better.

On the other hand we have families that, under the terrible stress of a member's illness and death, show themselves to be wonderful and grace-filled in every way. I've been in rooms where 4 or 5 generations are present including little babies who are passed from lap to lap, and where those most in need are supported with respectful tenderness. One family member was concerned what staff members would make of the laughter that occasionally bubbled out from their doorway into the hall. "We enjoy each other's company," the family member told me. One could imagine the comfort brought to our patient, resting comfortably but not really talking, to hear his family enjoying him and enjoying each other as they always had. I think it's great.

I think it's especially great when there are families on the inpatient unit who have things in common, maybe little kids near the same age. They meet in the family dayroom where there's a TV and coffee and etc., and the kids may play together, and the families often care for one another in very tender and helpful ways. It can help us to help someone else, and thus I have seen women about to be widowed reach out to one another, exchanging phone numbers, talking in the hallways, encouraging each other. I have seen musician visitors to one family going to another patient room to play songs or sing with another family. I have seen families who love to cook bring enormous platters of food to the family area, reasoning that "everyone here is going through the same thing, and we all need to keep our strength up." HIPAA makes these shared efforts harder, but it is uplifting to notice that all the privacy regs in the world can't stop people who need to bond from bonding and caring.

Even deaths can come in clusters. We've had weekends where no one dies at all, and one memorable one where nine people died in 24 hours. Who knows why? Perhaps mere coincidence, perhaps atmospheric conditions. Perhaps heaven and earth have come very close in what the Celts call a "thin place," and more than one spirit has slipped through.

And now I need to prepare for work. This week brings a bunch of families who are trying like crazy to care for their loved ones at home, against great obstacles, and some of those loved ones may end up needing transfers for inpatient care. It also brings family members newly sensitized to questions about hospice, wondering if this choice is really "right" according to their religious beliefs. Hopefully there will be a baby or two to admire, maybe a dog to pat, a joke to share, and a way to make a difference for someone.

Wow! Technology!

Hot diggety it is possible to blog via BlackBerry! I have finished my fourth and final unit of clinical pastoral education, aka CPE. To celebrate I upgraded my mobile phone and plan.

Don't know if this'll format right so I'll end here.

Euphemisms, Confluences of Catastrophe, and Observations

Wouldn't YOU worry if a mortuary van pulled up to your ambulance entrance, and you noticed it bore special "handicap" license plates, with the universal little sign that is supposed to represent a wheelchair? I do. I mean, it's not like the passengers will care if they can't park right in front of the supermarket, is it? They're just going to wait in the van regardless.

It's not great, but it happens sometimes that, at a hospice, a couple of mortuary vans are at the ambulance entrance when a new patient comes in by ambulance. We hate for their first sight to be a mortuary cot with a Very Quiet Passenger on it, but it can't be helped. On the other hand, if a very anxious and stressed family is touring one of the wings, we ask any mortuary drivers picking up Passengers to wait until that family leaves before heading down the same hallway with the cot.

Usually, if the fire department is coming for a random safety investigation, they'll arrive as the charge nurse is trying to take report on a new patient while scanning orders while waiting for a doctor to call back, and while there are tons of people at the desk with questions about their loved ones, and the printer has just jammed.

I think every nurse in the WORLD knows what it means when a handoff report (for a patient coming into a unit) includes the sentence, "Oh... and he's been a little bit agitated this morning." BATTEN DOWN THE HATCHES, is what that means. There are all kinds of very good reasons why patients get agitated and unreasonable. And often, once someone has gotten agitated and unreasonable, it takes awhile to get back to calm and reasonable.

Sometimes the agitated and unreasonable person in a patient room is not the patient.

However, staff members are not allowed to medicate family members, friends, one another, or themselves. So you almost hope the agitated, unreasonable person in the room IS the patient.

If anyone came up with a way to deploy Ativan in a room spray, it would be worth a Nobel prize.

Telling a grieving little kid that his aunt is going to be SO HAPPY in heaven with Jesus is likely to put that kid off theology for a lifetime. Kids are smart that way.

Notes At the End of a Tough Day

1. Drinking, as in alcoholic drinking, can kill you or your loved one at a shockingly young age. It's easy to think that one has years if not decades ahead to cope with the problem. Livers and kidneys can go pretty far south as it turns out before they let us know that all is Not Well.

2. If your loved one checked into rehab and came home early announcing he was sober and didn't need to finish? It probably isn't true.

3. People who are alcoholic do not want to be alcoholic. After awhile, a person addicted to alcohol is not drinking to feel good. He is drinking to stop feeling ghastly. And he doesn't believe there is any way, without alcohol, to stop feeling ghastly. And alcohol isn't working so well anymore...

4. If there is one disease that makes me wish in vain for a magic wand, it is addiction. Hell on earth for the patient and everyone who loves him.

More PSA

Good to know, for your loved ones and maybe even yourself: There really is a difference between a person who makes decisions no one likes and a person who is incapable of making their own decisions. Unfortunately, well-meaning people can blur that difference by forgetting that there is no law that forbids a competent person to choose to live in an "unsafe" manner. It's is a good thing there is no such law, or else we would be arresting everyone who chooses to skydive or mountaineer, and if we got totally crazy we'd arrest everyone who chooses to drive a car.

So, if your loved one decides she wants to return home to independent living even though her heart might stop at any moment, say (or any number of other things), and that completely freaks you out, you do have some ethical choices. You could ask the loved one to reconsider; you could scrape up money and hire attendants; you could move in with the loved one or ask the loved one to move in with you assuming you can take care of her. But, if your loved one clearly understands the risk of sudden death (or whatever) and is willing to incur that risk because of her desire to live independently, and can be clear about that, chances are she is not incompetent. You can really disagree with her decision, you can wish she'd go to a nursing home or something, you can try to talk her into doing it your way, but you may not succeed.

You can intervene if your loved one is not capable of understanding her risk or is not able to decide whether that is an acceptable risk. If your loved one has dementia such that she cannot understand her condition and its consequences, you can intervene. If you are her designated decision-maker, you can override her wishes in aid of her safety. If she doesn't have a designated decision-maker there are ways of filling that gap. But if she's competent, all you can do is figure out how you wish to cope with the possible consequences of her decisions.

The systems in place for determing competence are not idiot-proof and some are not even fool-proof. I recently heard of a situation where an elder was found incompetent because the family felt her choices were unsafe, even though she was clear about her condition, wishes, and risks. She was seen by a mental health evaluator and thought the questions she was asked and the test she was asked to take were stupid and irrelevant, and said so. She was absolutely intransigent and crabby besides. The evaluators couldn't figure her out and decided she wasn't competent. Not so. The patient was perfectly competent to make decisions--she just made decisions other people didn't like.

We who work in hospice can fall into the trap of feeling that any sane person would like the care we can provide at end of life. Who on earth would want to be in pain, alone, and unsafe when there are options? Who wants to die in an emergency room or ICU with tubes in every orifice and machines for company? As it happens, plenty of people would make that choice--people for whom, say, agency and independence are much more important than comfort and safety. I met such a person once when I attended a hospice referral. EVERYONE involved--doctors, nurses, family, hospice admission staff--felt that receiving inpatient hospice care was in the patient's best interest. The patient, however, did not agree. And the patient was clearly competent to choose. This patient was a fighter, down to the bone. Remaining a fighter was how the patient found meaning and identity. The patient had a bad disease and knew it, but was not done fighting and might never be. I felt for the family because this patient would be hard to take care of, but we could not give the family the comfort of believing the patient incompetent. Hospice could have provided comfort and support and safely, but comfort and support and safety were not important to the patient as fighter. Our values did not match. I am guessing the patient probably did die in an ICU unit, or will, having stayed a fighter until the very end. And that has to be OK, problematic as it might be for those left behind.

DNR does not equal suicide

I don't know why this is, but over the last several months I've encountered more families voicing some suspicion about hospice care than I did previously. Perhaps the elevated level of attention to health care (death panels, anyone???) has made people more comfortable asking questions than before; that would be good. Or, perhaps the elevated level of attention given to health care has made people more suspicious of the intentions of health care professionals (that might be good or not, depending on the situation).

A couple of people have asked me, as the chaplain, whether or not a DNR (do not resuscitate) order is tantamount to suicide. This is an interesting question, and it may be that in some communities there are recommendations against the DNR--I don't know. But in the cases where I've been asked, I've been familiar enough with the faith tradition to be able to assure the person that a DNR is not considered equivalent to suicide. I think there is a misconception about resuscitation, perhaps based on TV, where rescues are so often so totally and unconsequentially successful. To be sure, sometimes resuscitation does succeed, but if you or your loved one is older and frail, and there's a terminal diagnosis, especially one involving the heart, the chances are that if your heart stops, it won't be in the mood to start up again no matter what is done. Without the DNR, the default position of a first responder has to be to try to bring you back, and that will involve someone slamming her or his weight on your chest about 100 times a minute. If your heart SHOULD be horrified enough to start up again, and you SHOULD eventually wake up, consider that now you will have the terminal diagnosis you started out with plus multiple rib fractures. This will not feel good. You won't be able to breathe well enough to keep your lungs clear, assuming they were clear to start with, and you will have won the battle but lost the war, in a painful way. Having the DNR in place is not suicide in this situation. Rather, it is protecting yourself or your loved one from what is called "futile care" -- that is, care that won't help you. Although, as I say, it may be that some religious communities have a particular opinion about the DNR, I'm not aware of any that believe we are morally obligated to accept care that won't help us.

That said, there are some people who need assurance from their own community or denomination when it comes to the implications of treatment decisions. They can't and shouldn't rely on my word as a chaplain. That's when my job is to facilitate the conversation where it needs to happen, and stand with the patient or family member against pressure for a fast decision. It's easy for the medical system's value for speed to take over, but at the same time a patient or family member who is not sure about a decision is one who will carry that unsureness forward throughout the course of the decision, whatever that may be. Especially in a decision for comfort care or hospice, it's normal to have some lingering doubts, which can be very painful and stressful, but if a simple visit with a priest or pastor or leader can take some pressure off or offer some concrete guidance, it's well worth having that visit.

Someone once mentioned a desire to "have my DNR tattooed on my butt." If you have a similar intention, let me do my civic duty and warn you that the first responders will not roll you over to check your butt. Have the DNR, and the name of your MDPOA, tattooed on your chest, which is what they will pound on if they feel the need to resuscitate you.

Just a Simple Request

When a patient gets transferred from one facility, let's call it Health Care Facility A, to another, let's call it Health Care Facility B, flow of information can be critical for proper follow-up for the patient's needs. Often whoever is caring for the patient at Facility A speaks directly with the receiving professional at Facility B, as the patient is being rolled out the door at Facility A. (This is by no means the only communication, because are procedures all along the way including a formal acceptance of the patient by Facility B.) But the last-minute report, usually exchanged between nurses, can be very useful. It can be especially useful if the nurse at facility A has cared for the patient for longer than ten minutes, although this is not always possible.

My simple request is this: if, at Facility A, the patient has loudly and frequently voiced a preference for receiving a dozen root canals with no pain reliever while lying on a bed of nails over being transferred to Facility B, could someone include that in the report? It would sure help me do my spiritual assessment... actually, it would help me preserve my hearing while attempting to do my spiritual assessment.

Evidence-Based Blog Changes

So, I have finally selected a different template for the blog, if you can still call it one given the infrequency of my posting. I have finally believed the research that shows that light letters on dark are Very Hard To Read, even though I sort of liked them. Thank heavens for "canned" templates for those of us too lazy to love html.

It may now be that I have enough material so that I can blog thematically without having to worry about HIPAA and patient/family privacy concerns. The last thing any blogger wants is to inadvertently post something that makes a patient or family member feel that one is describing them in a particularly intimate time. As it happens, there are plenty of bigger themes that I like to blab about, and there is humor to be found in those as well, and pathos, and the like. So we'll see how it goes.