Thursday, April 30, 2009

Fun-filled Funereal Facts

The "E-Kit"

My hospice, like many others, supplies all patients/caregivers with an Emergency Kit, or "E-kit". Ideally, the E-kit is meant to be stored in a common place in all households (for us, in the fridge) so that, if needed, it can be easily found. Also, ideally, caregivers should not open the kit and use its contents unless instructed to do so by a nurse.

These are the contents of our E-kit:
  • A small bottle of liquid morphine (Roxanol) for fast relief from pain. The liquid form of oxycodone (Oxyfast) is substituted in the event of a morphine allergy.
  • Promethazine (Phenergan) tablets for nausea/vomiting.
  • Prochlorperazine (Compazine) suppositories for nausea/vomiting. These are used if the patient is unable to swallow or "keep a pill down" due to severe nausea.
  • Acetominophine (Tylenol) suppositories for fever control.
  • Lorazapam (Ativan) tablets for anxiety/agitation.
  • Atropine eye drops. Although an ophthalmic solution, these drops are placed under the tongue (sublingually) to help control excessive secretions... in other words, the dreaded "death rattle".
Unfortunately, my hospice is less than perfect when it comes to educating our clients about the E-kit. All too often the package is opened by the caregiver and the contents are scattered about the house. There's also the, thankfully rare, caregiver that is happily putting atropine drops into the patient's eyes thinking that they are for the purpose of relieving itchy, dry eyes!

The E-kit is an invaluable tool for the caregiver to have on hand. However, it can be rendered useless or become even dangerous without education about its use and purpose. I've informed caregivers about the E-kit many times... it's literally no more than a five minute exercise. So why are we failing at this? I've brought my concerns to the attention of the hospice director. Soon, hopefully, there will never again be a 2 AM phone call that goes something like this...

Caregiver: "Dad is in so much pain and his nerves are just making it worse. I just can't seem to help him!"

Me: "Okay, I want you to go to the fridge and take out your e-kit."

Caregiver: "What's that?"


Monique said...

"What's that?" being such a helpful thing to hear at that time.

dethmama said...

@ Monique... Yes, it's a very stress-inducing thing to hear at such a time. What has the potential of being an "easy fix" over the phone, becomes something quite different.

Kit Courteney said...

That's actually quite scary.

Gail Rae said...

Our hospice called it a "Comfort Pack". It contained pretty much the same stuff as you've listed. When I received it, sometime in August, I think, I was advised to leave it in the refrigerator and, as you mention, not to access it without the orders and advice of a Hospice RN. Within a week after receiving it I insisted that our regular nurse give me a rundown of what is in the pack. The rundown was very rudimentary. I wrote down everything he said and placed the paper in the pack.
Later, on December 2nd, I decided that the information he'd given me wasn't nearly satisfactory and once again approached a subbing nurse about the contents. She was very obliging. I even posted the results of that consultation here. Note, though, this consultation took place a mere six days before my mother died. She'd been on Hospice since 6/29/08. I'm not sure what prompted me to insist on a second "course" in Comfort Pack meds. Even at that point there was no indication that my mother might be dead six days later. I'm glad I did, though.
I recall that our regular Hospice RN felt that Mom should have been on morphine long before she was, but his yardstick was her comfort when breathing and, up until a few days before her death, despite her RPMs, she insisted she was comfortable and I'm sure she was; funny what people can get used to and consider "comfortable". I knew she was breathing "hard"...but she'd been doing that for many months...and was clear, throughout, that she was comfortable.
I agree that Hospice should cover this very important tool better. Our first RN was cursory in his coverage and, even though I wrote what he said down, I obviously felt I needed further information. The second time I asked (another RN), though, I got an excellent review of the Pack, its contents and its use.
Granted, our experience with Hospice was probably fairly unusual: Mom's term lasted approximately six months, for one thing. Except for the last few days of Mom's life, she was not only comfortable, she appeared to be so stable that the only indication that she was declining was a slight loss of weight; this was also the only significator that kept her on Hospice; she almost got bounced twice. I don't think that we used the contents of the Pack too late...or too soon. But, I certainly agree that this tool is not well covered by Hospice. I had to ask, both times, to have it explained. If I hadn't asked it probably wouldn't have been explained.
My guess is that the reason it isn't well covered upon introduction is because of the acute nature of the medications it contains. Perhaps Hospice personnel think that if caregivers and clients have "too much" information about the contents they will decide, in a moment of panic, to use the medications without consulting Hospice and accidentally mis-medicate or kill the client. As your post shows, though, lack of information is actually the problem, here, not availability of information.
Excellent post. Thank you for bringing this up, dethmama.

Gail Rae said...

LOVE the graphic, by the way!

dethmama said...

@ Gail... thanks so much for your great comment! It's interesting to hear that my hospice may not be the only one the needs to work on the education factor. I've also heard that some nurses hesitate to discuss the e-kit, in detail, because they feel that the caregivers are not ready to hear "the truth". I dunno, what are your feelings?

Liz said...

I'm a hospice nurse and agree with this many patients or family members dig right in (probably more than half)! Usually, they don't remember being told not to open the box. Even though it is written right on top, they often don't read the instructions.

There is so much new information to process at the beginning of hospice service, not to mention that the news that someone they love is terminal has blown their minds, it's simply not possible for families and patients to remember everything.

This is why family members and/or patients require REPEATED instruction on all their medications. They are in a situation that is so overwhelming and so new to many of them that taking a moment to remember to read instructions (even though it seems so simple) often doesn't occur to them Not to mention how reluctant many people are to use the dreaded morphine. It can be scary. There is nothing NOT scary about having a loved one in hospice.

For all my new patients I give full instruction on the contents of the comfort kit. If desired, I will open them up and go over each item with the family and/or patient, resealing it afterwards and reinstructing them not to open it again without instruction from the hospice MD or nurse. Nonetheless, when the chips are down and things are not going well, families often forget even the simplest instructions.

I once had a mole removed and biopsied that was positive for melanoma. I asked the MD for the report and although he handed it over, I was so freaked out I couldn't read one word of it. I was also too embarrassed to admit it. I suspect that many families and patients find themselves in this frame of mind.

I always say that one mark of a good nurse is someone who has the habit of constantly repeating herself (or himself).

It's annoying to the hubby, though!

chpnRN said...

We usually bring out what we call our "Comfort Kit" a few days after admission to Hospice. I sit with the caregiver and discuss what each item is, how it is used and that we will tell them when to use it. I usually have them write with a magic marker on the bottles/boxes what each item is for, so they can remember in their own terms what each item is for. Like Morphine they will write FOR PAIN, or LABORED BREATHING. The atropine drops "GURGLING" "UNDER TONGUE". We too have them keep it in the fridge. Usually they leave it where we say because they know its importance and that it will be needed in an emergency.

Gail Rae said...

Thank you for asking, dethmama (she said grinning enthusiastically). I LOVE having my feelings solicited! Here's what I think in response to Hospice RNs feeling that this or that caregiver is "not ready to hear the truth".
1. If the client is on Hospice, the caregiver already knows several truths that are pertinent to the Comfort Pack and, presumably, wants palliative care for their care recipient, which the Comfort Pack affords. Yes, they may be having problems adjusting to the truth of their care recipient's terminality, BUT, they aren't having THAT much trouble because they are part of the care relationship that has asked for Hospice. This, in itself, should be taken into consideration above and beyond any possible "feelings" RNs may have about caregivers not being ready to "hear the truth". They've not only heard, they've reacted in a highly appropriate manner by assenting to Hospice on their care recipient's behalf.
2. Hospice RNs need to support their "feelings" with facts, especially in regard to giving out information about the Comfort Packs and stressing the importance of that information. Being able to facilitate communication to this end should be one of the skills sought when hiring Hospice RNs and, further, should be supported with ongoing skill practice when training and supporting Hospice RNs. If our regular nurse (the recalcitrant one) "felt" that I was reluctant to "hear" any "truth" connected to the Comfort Pack, he was clearly wrong. In addition, I had provided him with access to information that would have corrected this notion: During the first visit I gave him the url to my Mom & Me site and encouraged him to read at least the most recent posts, in order to get an idea of how Mom and I had been doing, besides giving him a review of how we were doing. I don't think it is beside the point that he admitted to me, two and a half months into the Hospice relationship, that, up to that point, he'd never looked up the journals. Nonetheless, he should have been able to figure out my willingness and ability to "hear" the "truth" when I asked about the contents of the Pack. If he kept his explanation to the bare minimum because he "felt" I didn't want to hear "the truth", he was wrong, again. Frankly, aside from my speculation in my first comment, above, I thought he was simply distracted and a little lazy...I also wondered if maybe he didn't know that much about the contents and their use. However, in subsequent meetings it became clear to me that he probably did know quite a bit more about the Comfort Pack meds than he was willing to discuss, and, despite my assumptions about why he avoided this discussion, I'll never know why he actually did.
In (long) summation: The books "Final Gifts" and "Final Journeys", as well as your journals, here, make it clear that it's not uncommon for Hospice nurses to have to confront situations in which they need superior communication and hmmm...I guess you'd call them "intervention" skills in order to deal with caregivers' reactions when things get rough for the care recipient. My guess is that, while excellent books on Hospice and excellent Hospice nurses (such as yourself) make it clear that many Hospice RNs are capable of sensing and thinking intelligently, quickly and doing what it takes to smooth out a sticky situation, the chances are high that Hospice Administrations and Employee Support Staff aren't as available as they should be to nurses in the field in order to make sure that the RNs are always equipped and well supported in individual situations to deal with caregivers directly.
I don't have a problem with Hospice RNs relying on their senses to assess situations; highly developed senses are VERY RELEVANT to this work. But, I also think that Hospice RNs should be encouraged not to rely ONLY on their feelings when truths need to be broached, especially truths as important as Comfort Packs. If our regular Hospice RN had been counseled, before going into the field, to ALWAYS check whatever "feelings" he may have about how much information a particular caregiver could handle against the reality, I would not have felt it necessary to approach another RN three and a half months later for the information I needed.
After almost 12 years of dealing with the medical establishment on my mother's behalf I didn't actually consider this Comfort Pack glitch major because it did not stop me from getting information I knew I would need and getting it before I needed it. I'm sure it was also my long term responsibility for my mother's medical care that instantly clued me into the importance of the Comfort Pack, so there was never any danger of me losing it before it was needed. However, I'm also aware that many caregivers come to medical management late in the caregiver game and are often so overwhelmed by other caregiving issues that it's easy to slight the medical concerns and leave those up to the pros.
Thing is, though, I remember the intake interview on Mom's first day of Hospice. The Intake RN was thorough with both Mom and me, separately and together. By the time the interview ended she was very familiar with the level of my medical advocation on behalf of and medical knowledge of my mother; she even commented on it, and, as well, was busy, throughout the interview, taking very specific, complete notes. So, Hospice has the means to know, before an RN is assigned to a client and caregiver, what the caregiver's relationship to the care recipient's medical profile is. In our case, that information was obviously either not read or taken seriously by our regular RN. I'm not sure WHAT the resolution to that problem would be.

dethmama said...

@Liz@Liz@Liz...repetition! Wonderful point and interestingly enough the exact same thing I discussed with our hospice director. Nurses need to continuously reinforce their teaching to families that are under this kind of stress. Not just for medications, but also for the dying process itself. Thanks for you comment, Liz.

dethmama said...

@ Gail Rae... darlin' you're a blogger's dream. You subscribe to comments AND respond to questions.

Thanks a million for sharing your personal experience regarding this subject. It's SO important for those of us in the field to get perspective from the caregivers.

Bless you!

dethmama said...

@chpnRN... job VERY well done.

One difference is that my hospice "tries" to have an e-kit sent to every pt on the day of admission. While I'm sure that the admitting RN tells the caregivers about the e-kit, I'm sure that this information is often forgotten. I think we may need to give a written handout to new admits about the e-kit. Hmmm...

Gail Rae said...

A handout is a GREAT idea! I have one improvement on it. Make it so that it can be attached to the top of the box (like a little booklet; our Comfort Pack was large enough to accommodate a booklet attached to the top) AND SUPERVISE THE ATTACHMENT OF THE HANDOUT TO THE TOP OF THE BOX AFTER REVIEWING THE HANDOUT WITH HOSPICE CLIENTS/CAREGIVERS.
A question: Why is it important for the pack not to be initially opened before first use? I didn't until it was necessary to use the pack and did so while being instructed by a Hospice nurse, but, suppose, when the Pack arrives, during next "routine" nurse visit the RN and the caregiver and/or client open the box together and review the booklet while handling the meds, strictly for familiarity and as a memory device?
I remember, I thought that the reason I wasn't supposed to open the kit until it was necessary was that this would compromise the effectiveness of the meds. I, of course, "ass-(out of)u- (and)me"-d this. I later found out I was wrong, but was never given and never sought an explanation for the inviolability of the kit until first use. Maybe the reason for this inviolability should be examined and rethought. I don't know about anyone else but if I handle something and examine it I am much less likely to completely forget it or lose it, even if I am subject to a variety of stresses at the time. In addition, if the pack was opened upon arrival with the supervision of an RN and the contents handled, reviewed (rather as chpnRN does), the booklet could be reviewed at that time and the client/caregiver could insert the booklet into the pack.
And, yes, Liz, repetition, repetition, repetition is PARAMOUNT. Even in my highly and long informed state, during my mother's Hospice stint I was, at any time, likely to forget anything and everything and to mis-hear instructions, even as I wrote them down while I was listening to them.
This is a GREAT post, dethmama. I hope your considering submitting it to the next PCGR (it's coming up in a couple of days). This deserves wider coverage and commentary.

Liz said...

Comfort packs are not supposed to be opened because:

1. The meds in the kit are not yet accompanied by an MD prescription. By law, a doctor's order must be obtained prior to the use of any of the meds. Families occasionally have (despite instructions), opened them and used them.....hopefully appropriately, but sometimes not. Huge safety and legal implications can occur.

2. To ensure that the drugs included will be there when needed. It doesn't happen often, but occasionally someone who has access to the patient's home will divert the meds for use by themselves or someone other than the patient. Again, this has huge safety and legal implications.

A patient of mine opened his comfort pack on it's arrival and impulsively ingested some of the contents. Fortunately (?) he had a long history of substance abuse and it didn't faze him. (The kit has only sample sized amounts of the meds included in it, just enough to cover an emergency but still enough to cause trouble). Also fortunately (for the admission nurse's and my own sake), it had been well documented in his chart that he had been instructed to not open the pack.

We necessarily begin by teaching to the lowest common denominator. We must do this because we don't yet know you or your abilities or what concerns you the most. Our families and patients include those from all socio-economic groups, from those with less than a high school education to the very highly educated. And, education is no consistent indicator of ability.

Gail Rae, you are an exceptionally well informed caregiver. Most of our caregivers are not at your level. Hopefully, as the relationship between RN and caregiver develops all the bases will be covered appropriately. But, not all hospice nurses are created equal. While most are very good at their jobs, some are (to be realistic) better than others. Amongst my co-nurses, some are more laid-back (let's open that kit and see what's in it), some are a bit more starchy (you are not to open it), some are more emotional and will focus on feelings more. Sometimes, a nurse and a caregiver are just not a great match. I've worked with caregivers that I had a hard time 'reading'. Perhaps they weren't able to express their individual needs in a way I was able to hear or acknowledge. Or the communication deficit was on my side. It's important for families/caregivers to know that they can request a staff change if they feel a lack of connection with their nurse. And this has happened to all of us. Even though we were doing a good job, the family just didn't connect with our mode of teaching/nursing.

In any case, we need to be diligent to continue to improve the service we provide. Feedback such as that from Gail Rae is very important.

Dethmamma, I love your blog...especially the descriptions of your patient/family encounters. They ring so true!

Gail Rae said...

Liz, thank you for explaining why the kits should be considered inviolable until needed and the need supervised by a Hospice medical professional. I get it, now. I didn't know that the contents aren't automatically prescribed, although I should have guessed since, once we opened the morphine (the first of the kit meds we used), I was instructed to call each time I thought the dose should be increased. Depending on the caregiver (since, believe me, I'm very aware that caregivers come in all shapes and sizes, levels of ability, levels of interest and levels of involvement), it might not be a bad idea to let recipients of the packs know this. Despite what may seem like my extreme medical involvement in my mother's care, even when I meddled with her prescriptions and supplements (which I did a fair amount throughout my stint as her companion and caregiver), I ALWAYS consulted with her medical people, even if I'd already looked up information about medication meddling (which I often did).
One thing I have to say, I was made acutely aware, from the beginning of Mom's Hospice management, of the importance of a good fit between client(s) and Hospice personnel. Our Hospice came right out, during the intake interview, and stressed not only this but that it was perfectly appropriate for us, if necessary, to request different people if our initial people didn't fit well. Despite what I said about our regular RN, above, he was a good fit. He adored my mother and my mother adored him...that was good enough for me, since her relationship with him was of primary importance and he and I always blatantly worked through our minor contentions. We had four subs, I think, one fairly regular sub, all of whom I appreciated with whom I worked well. The fairly regular sub, thankfully, also adored my mother and my mother also adored her. The same was true of our assigned MD and my mother.
Lastly, I noticed that I inadvertently wrote that when I received my first explanation of the contents of the kit, I put it "in" the kit. Actually, I didn't. I put it "with" the kit, in the frig...and didn't open the kit until some months later. It was the same sheet on which I wrote later instructions. In fact, I have a memory of mentioning to our regular RN, the first one to explain the kit, that I wanted to put the sheet "in" the kit...and that was when he strongly underlined the warning that the kit was not to be opened until it was needed and I was in touch with a Hospice medical employee.
Funny about the guy who "impulsively" sampled the kit but "wasn't fazed" by what he took. Reminds me of a similar story I heard, some time ago, definitely on TV but I can't remember the source, of a fireman mentioning that, yet again, "Fortunately(?)" smokers don't succumb to smoke inhalation during fires as quickly as do non-smokers, for the obvious reasons! Neither, he mentioned, do firemen, whether or not their smokers (I would assume that most of them aren't) because of their increased exposure to smoke and carbon monoxide.
Ah, the wonders of the human body!