Psychiatric Medication Treatment Plans: Part 1 (Introduction)

Medication tablets and capsulesIn Massachusetts, we have a document which follows a person’s behavior-modifying meds. It’s called a Psychiatric Medication Treatment Plan/Consent. It is typically authored by the DDS provider agency (sometimes I write them) and documents psychiatric medication treatment (its back-story, current treatment regimen, historic response, prior treatment tries/fails/successes, and reference to non-drug treatment modalities in use.

The goal of this plan is to keep a person’s psych meds in line with real need. This document is a communication tool, a teaching tool and a legal tool. As a legal tool, it serves to document the informed consent of the person (or her/his guardian). As a communication tool, it’s intended to convey a person’s need for support across time through a changing array of caregivers, professionals, and providers. Why do we need this?

Objective, not just subjective

Well, imagine Joe is going to his three-month psychiatric medication review. Joe’s regular caregiver couldn’t bring him, so Bill, a relief staff-person, comes in. Bill meets Joe for the first time on the afternoon of the appointment. Joe doesn’t communicate verbally, but does use a few signs, and personalized sounds and facial expressions. Bill probably shouldn’t be there in the first place. The only real service his orientation and training are qualifying him for at this point is driving the car. But we’re also expecting him to advocate for Joe and to support the psychiatrist to make informed decisions! How on earth can he do that?

First, he needs to learn Joe’s communication style, but that’s another discussion. Next (and where we’ll focus): how can Joe’s response to treatment be effectively conveyed to the prescriber? If we want the prescriber to make good decisions (taper or titrate doses, initiate therapy, refer to another practitioner) we need to give good information. If we’re supporting someone in their home 24/7, no one person is going to have the whole story without a trusted system of recorded observation and documentation. The best we could do without data is give our impression of how a person is doing, which would be entirely subjective. To give powerful, potentially dangerous medications ordered on the basis only of shifting, subjective data is unreasonable and unnecessary.

A reliable system that connects the person, the prescriber, the caregivers and the family/guardians is essential. This system needs to focus attention on specific mental-health symptoms once they’ve been identified as troubling, and connect their intensity with the efforts made to relieve them. Only with such a system can a person be protected from over-treatment, under-treatment, or neglect based on a lack of advocacy or a lack of objective data.

Who gets a Psychiatric Medication/Treatment Plan?

DDS requires this for persons under legal guardianship who are taking behavior-modifying medications. These can include (but not be limited to):

  • Antidepressant meds: e.g., Celexa, Zoloft, Prozac…
  • Antianxiety meds: Ativan, Klonopin, Zoloft…
  • Antipsychotic meds: Abilify, Clozaril, Geodon, Risperdal, Seroquel, Zyprexa… (in Massachusetts, a court-appointed monitor is required if persons under guardianship are treated with meds from this category)
  • Mood-stabilizing meds: Lithium, anticonvulsants like Depakote and Lamictal prescribed for mood stabilization…
  • Sleep/insomnia meds: Ambien, Lunesta, melatonin, valerian

To be honest, meds for insomnia wouldn’t be in the same class with the psychiatric meds if I had my way. The support and protections needed to helpfully but not excessively help someone sleep are different and much more narrowly focused. We kind of have to shoehorn the Psychiatric Medication/Treatment Plan to make it work. It is, however, required in Massachusetts to do it this way at the moment.

At my agency, we’ve implemented plans for persons not under guardianship to extend similar protections and supports to people who can or do give their own consent.

 

Next: The plan itself….

(Note: The situation might be very different for a person whose disability allows him/her to effectively self-report symptoms and self-advocate concerns.)

When the end looms close: explaining meds for comfort

Nothing is more emotionally challenging for a caregiver than coping with the demands of caring for a person who is dying from a painful illness. Shifting the focus from obtaining a cure and regaining health to maximizing the quality of each day and reducing suffering is a paradigm shift for which there isn’t much time to prepare. Much and needless suffering can result when caregivers and teams are not ready to respond to a terminally ill person’s changing needs. Some (not all) need pain control.

Ironically, the medical advances and technology which can reduce or eliminate pain during the final days and weeks of life have been readily available for decades, but much misunderstanding still surrounds their use. Some may hesitant to use these medications for fear of creating a dependency; others worry that their use will shorten life/hasten death. It is necessary to refocus on the fact that the goal of comfort care is comfort: this begins with the removal of or absence of suffering.

In this post I simply convey how on one occasion, with one team of caregivers, some simple explanations cleared the way for positive, appropriate and effective pain control for a man who wished to spend his last days in his own home with loved ones. Explaining the rationale for continuing to administer meds for comfort (morphine, Ativan) on a regular schedule without the gentleman prompting us for medication:

“One way to give meds for pain is simply to take the medicine when the pain gets bad. For example, when you feel the pain of a headache and realize it’s not going away, you take a Tylenol. If it doesn’t work, you may take more. Eventually, you stop noticing the pain and go on to other things.

“A better analogy for giving morphine and Ativan for comfort is when you take a Vicodin after having a tooth pulled. You don’t wait until the Novocaine wears off and you feel the excruciating pain before you take the Vicodin. You don’t wait until you feel the pain, because you don’t want to feel the pain. You know you’re going to need the help, so you take the Vicodin before you feel anything. Then, if the order is for every four hours, you take the next one on the dot of four hours later, even if it doesn’t hurt yet. You do this because you know that if you don’t take the Vicodin before the pain comes, you’ll suffer, and then when the pain is really bad, even if you take two Vicodin, it won’t work as well.

“For the person who is dying, he may take morphine and Ativan. It takes away pain, also anxiety, and helps with the “gurgling” feeling, and the very uncomfortable sensation of not being able to get a breath, as congestion builds in his respiratory tract. Waiting until we see evidence of suffering would be a mistake, because if we give him the meds on a regular schedule, he won’t suffer! We don’t have to worry about giving “too much” medication. If we see that he’s very sleepy a lot of the time, we can adjust the frequency of the doses. For example, if morphine and every four hours and Ativan every eight hours is too much, we can try morphine very six hours and Ativan every eight. Our goal is that he not suffer at all.”

There can be barriers to doing this well. When a person has skilled nursing visits, the nurses can (and should) administer these meds for comfort, but they might not always be aware of the need due to not being with the person as much / as often.

Strategies for overcoming this obstacle: caregivers can remind the nurses, when they visit, that the person needs morphine and Ativan to continue to feel comfortable. Request additional visits from his nurses as needed. Obtain formulations of comfort meds which the caregivers can themselves administer (sublingual, etc.) if caregivers are unable to give medications by subcutaneous injection (as is often the case when unlicensed caregivers are certified to give oral medications).

The most important thing: keep the focus on the person who is ill. This person may want and need to spend the remaining time expressing love, receiving love, celebrating the accomplishments accrued and enjoying the relationships cultivated over her/his lifetime. Reducing suffering makes room for enjoying life. Achieve this with, among other things, mindful attention to administering medications for comfort.

The Craft of Teaching

Question: Have you ever been taught by someone who:

  1. Didn’t care if you understood them or not
  2. Thought the subject so boring or simple that you should already know it
  3. Became impatient or gave up when you didn’t absorb their training right away
  4. All of the above

Would you agree? It wasn’t nice. It didn’t help. It wasted everyone’s time. Maybe even it risked people’s safety, health and happiness. We don’t want to do that. Ever.

Like any craft, if teaching is worth doing, it is worth doing right.

Teaching is integral to nursing, and at the heart of the DD healthcare coordinator’s role. Teaching (should) happen at the bedside, on the phone, at staff team meetings, verbally and in writing. I’ve seen it done beautifully, and I’ve seen it done appallingly badly. This by the same people!

Why does this happen? Because we don’t always think of teaching as a set of skills. Instead, teaching is sometimes done:

  • On autopilot (teaching something the same way to every audience)
  • As an afterthought (something added in at the end without purpose or preparation)
  • As a defense mechanism (“my learners will mess it up, but don’t blame me, I did my job and taught ’em”)

Bad! Ugly! Awful! To avoid this, we must understand teaching as a concept and as a series of essential actions.

What is Teaching?

Teaching is helping someone understand something they didn’t already. Perhaps you need to clarify something that’s confusing (make it simple and easy to grasp). Maybe you need to clear up a misunderstanding (show the difference between two similar things). Maybe it’s an entirely new concept you need to explain, illustrate and apply for your learners. Or perhaps you’ve got to train someone to perform a task correctly.

Example: someone’s diet texture orders changed from regular to mechanical soft.

Regardless of the circumstance, teaching requires that you know the learner. You need to understand his educational background, work experience, life experience, and current level of knowledge/ability. You can’t base this on assumptions; you need to ask questions. You can’t take the answers at face value, either: you’ve got to probe for specifics.

Teacher: Do you know what a mechanical soft diet includes?

Learner: Yes, I do.

Teacher: Tell me, please.

Learner: Well, nothing hard and crunchy.

Off to a good start! But does the learner really grasp the full scope of the definition? What about foods that are chewy, like sirloin steak? What about foods that have hard and soft components, like crusty bread? And how important does your learner think this is, anyway?

What’s The Point?

To teach, you’ve got to spell out the details, but make the main points stand out. I usually try to provide something in writing (which requires some time spent in research/preparation). This isn’t an exhaustive explanation, but bullet points. It can be step-by-step or dos and don’ts. It cannot simply be generic; it has to be person-specific. For example, if the person is allergic to milk, but the diet texture instruction sheet says milk is OK for this person’s mechanical soft diet, I lose my student’s confidence (or worse, I teach someone to hurt this person by giving them something they’re allergic to.)

The Teaching Process

To teach, you’ve got to introduce, train, and review. (Translation: first you tell ’em what you’re going to tell ’em, then you tell ’em, then you tell ’em what you told ’em.) To prevent this essential repetition from getting boring (which means nobody’s listening and everybody’s wasting time) you’ve got to make it relevant. Share a what-if scenario:

Teacher: What if we get this diet texture right? Means no more time lost/suffering from aspiration pneumonias, right? What if we don’t follow it? Next time this person gets pneumonia, we’ll be responsible. We might even make him/her choke! That could cause death.

Feedback Is Essential

Until I require and evaluate feedback, I’m just a talking machine. Feedback tells you if your learner got the point. First, you have to care. If a teacher doesn’t care about the learner getting the point, he should hang it up right now. Second, you have to ask the right questions to draw out the main points and reinforce them. Third, you have to listen carefully to the response. Then go back and re-teach as needed. Maybe verbal feedback is suitable; if the circumstances require it written feedback may be appropriate. Sometimes the only way you’re going to know if you learner understood you is to require hands-on demonstration of a newly-learned skill.

Follow-up

To be effective, teaching has to generate follow-up. This might require future training sessions, or equipping a supervisor to tell the difference between their employees getting it wrong vs. getting it right. My role as healthcare coordinator includes empowerment to visit people’s homes and exercise a healthy curiosity as to whether their supports are being provided as per the orders from the doctor and the training from me.

I have no right to expect that anyone will perform anything better than they’re trained and supervised to perform. This brings me to my last point: training requires that the teacher be the expert. Sometimes, that isn’t me. If my people need training to a skill or concept that I don’t possess, I can’t be the teacher. It’s as simple as that. Not the end of the world; it just means I need to access other resources to get people the knowledge and skills they need to succeed. Accessing other training resources becomes an extension of my responsibility, helping others (and me) to grow into the needs we must fill.

Like any craft, if teaching is worth doing, it is worth doing right.

Why I Love Being a Healthcare Coordinator

If you’re a fireman, or a doctor, or a nurse, people get a pretty clear picture in their heads of what you do as soon as you tell them your job title. As it happens, though, that first impression is usually wrong. The real workplace is far more diverse and specialized than the one on TV.

I have the happy privilege of coordinating healthcare for persons with intellectual disabilities. Some of them live in group homes, others with a caregiver, and still others independently. I’m a nurse, and my training and disposition is to care for my patients. In this role I get to do that and much more.

I’m with my patients for the long term; many months and years in most cases. I get to visit my patients in their homes, meet with their families, and talk with their doctors and therapists. I help make sure their medications make sense and are being taken appropriately. There is often a difference between what people want and what they think their doctor wants. I help a person choose a plan of action. I help make sure their caregivers understand how to meet their needs and why their efforts are beneficial. I get to support staff teams who have been supporting the same individuals for years and are sometimes as close as families. I help ensure that complex needs continue to be met and important needs aren’t overlooked. When trouble strikes, I support and advocate with hospital personnel to help them meet the unique needs of my patients. At the end of a person’s lifespan, I support their families to understand the choices with which they are confronted. I assess, I consult, I confer, I teach, and I care. This is a really neat job.

It’s not all rainbows and unicorns. There have been moments of frustration and grief, fatigue and regret. From this pain have come some of the most important lessons I’ve learned.

When I started in this field in 2003, I had some experience as a nurse, and I had years of experience as a direct-support caregiver in a group home for adults with disabilities. I did not have a clue as to the role of a nurse in a group home, or why healthcare coordination is needed. For bringing me up the steep learning curve, I am forever grateful to my teacher, mentor, and friend Cheryl Deignan. I also enjoy sharing what I’ve learned, in the hopes of improving quality care and quality lives for everyone who relies on healthcare coordinators like me.

Shockproof iPad case (your choice of colors)

I like this a lot. It kind of grew on me. I didn’t like the appearance at first, but now I love the look (helps that I get my choice of colors). The stand folds out to be a big comfy handle. When standing, there’s a little wiggle when you tap/swipe. Great for watching videos, FaceTime, etc. Unabashed Amazon affiliate ad follows:

iPad excitement!

This morning my friend Bob and I visited my student; I saw him yesterday and had explained what I’ve planned. The case came in the mail last night and the response from my student was immediate and excited! It turns out the overall cost (used iPad 2nd-generation 64GB $317.06 delivered + shockproof case $17.94 delivered = $335) was good and we got into the first lessons. Training curriculum on Day One included:

  1. How to gently plug in the charger
  2. How to go to the Home screen
    1. Push the Home button
    2. Type in the four-digit passcode
  3. How to start the JW Library Sign Language app by tapping it
  4. How to select a sign language video from the library by tapping it
  5. How to pause and resume play with two-finger tap
  6. Don’t get water on it
  7. Power off
  8. Power on

I had an old spare wireless router which I configured at tested first at my home and then connected at his house; it didn’t work. I don’t know if this is a router configuration issue; I’ll have to go back to his house with my laptop to troubleshoot (I know he has internet because the Sorensen videophone works).

Unexpected contagion: one of my fellow teachers (who is also my barber) liked the used-iPad idea so much that by the time she finished my haircut we’d ordered another one for her use (3rd-generation, a little more money and you get Siri and a better display). My father-in-law saw the setup last night and he wants one. I actually want one myself now.

Used iPad aggravation

The second-hand iPad came today and I am locked out of it because it was erased while still linked to the previous owner’s iCloud account with the Find My iPhone feature.

Did I purchase stolen property? Am I out $3C?

Hassan at Amazon walked me through how to send an email to IPAD MANIA, the Amazon seller whom I purchased this from. Short and sweet, I’m requesting they unlock this iPad and let me activate it. Hassan assured me that I can pay to ship it back to Amazon for a refund. I should be grateful to have such a reputable middle-man in this transaction. My excitement turns to sickening disappointment so easily…

UPDATE: I am returning the brick to Amazon and have ordered another. A gentleman from IPAD MANIA contacted me by email. He seemed nice enough and offered to rebate me $13 for return shipping and $40 as a discount; he asked me to return the iPad to him directly and he’d send me another, as well as some freebies and the discount to compensate for the inconvenience. It was tempting. $40! But when I talked it over with Susan, we realized that this nice man (whose name and address I do not know, I was given a generic company name and a public mailbox-type address to ship to) may or may not be honest, and I may or may not end up with a working iPad to show for my troubles. (Also, it’s a stretch to believe that a man who’s selected the iPad secondary market as his business foundation doesn’t know how to activate one.) On the other hand, if we just return to Amazon.com directly and reorder through them, we are more or less guaranteed the expected result. Hassan’s associate at Amazon sent me a prepaid shipping label, and I’m happy again.

Trying something new…

I’m happily back home to Susan from cold and rainy Orlando. The ATIA conference took a week of my life and gave me some very exciting ideas about using assistive technology. Today the two of us implemented the second of these. Ironically, I should have thought of this myself a long time ago…

At the conference, a dynamic Deaf high-school junior named Dante explained how he’s leveraged his iPhone as a communication tool using FaceTime (for sign language), messaging to talk with friends and family, and the BuzzCards app by Sorensen for communicating short messages to hearing people who can’t sign. He was justifiably proud of his success, keeping in stride academically in ASL and English while competing as a student athlete.

I have a very dear Bible student who has been deaf his entire life, is not fluent in sign language, and his only other form of communication is home sign. I’d hoped he’d follow the crowd and get himself an iPad (Project Endeavor was an opportunity while it lasted) but his only technology is a digital camera (which he loves) and a portable DVD player (far less lovable). I hadn’t faced the fact that his further progress depends on his comfort level with expensive technology that’s been completely out of reach for him. In that regard, I haven’t been much help at all.

Like Dante, my student has a Sorensen videophone, but unlike Dante he doesn’t do very well with it (for one thing, he never answers; for another, he doesn’t really seem to enjoy communicating through an interpreter). When I am with him and use FaceTime he loves it, but that’s gotten him no closer to getting an iPad or iPhone. I myself use an iPhone for communication constantly and an iPad regularly (JW Library Sign Language!) My friend, on the other hand, is hemmed in by daunting barriers including the high cost of iOS devices, no transportation, no Internet access, no credit, no employment… how could I have been so unreasonable in my expectations for so long?

At the conference, one topic taken up was cost vs. benefit: how is assistive technology (like the iPad) to be distributed so that nothing is wasted? Trucking in crates of iPads and dealing them out like cards seems not to be the answer; too often they end up in a drawer, batteries dead and unjustly blamed for their own uselessness. A better method put forward is to start from a small lending library of tech; identify a person who could potentially benefit, and establish criteria as to what success would look like. After a timed trial (say, three months) if the data shows improvement, then (and only then) effort is put into buying/selling/obtaining personal tech for the user. On the other hand, if there’s no data supporting improvement, the tech goes back to the lending library and we try something else.

As I listened to the discussion in our workshop, I realized that my friend is never going to get what he needs on his own (I shouldn’t have needed a week at a conference to figure this out, but that’s what happened). Today, Susan and I came up with a plan. A used iPad 2, a shockproof case I saw disturbingly demonstrated at the trade show this week, a second-hand wireless router and optimism are all we need to start our lending library. Either my friend will respond to training by learning to make and accept FaceTime calls and using the JW Library app and will agree to pay for the hardware on an installment plan… or I just got myself a new (previously loved) iPad with a clunky orange case. We are very excited…