My First ELNEC Presentation (lengthy post)

The subject was ethics, and the occasion was a three-session/nine-module ELNEC course run by two colleagues at my hospital. The course was open to nurses working in all areas. Thirty signed up, and ten attended all three four-hour sessions.

The attendees represented several different intensive and intermediate specialty care areas - thoracic surgery, hematology/oncology, transplant surgery, neurosciences, cardiology, and peri-operative. One of the two course coordinators is a nurse-educator for the medical cardiology intermediate care unit. The other is a staff nurse in the medical intensive care unit. This was the second ELNEC course they have presented.

I joined my two colleagues for the introduction in the first session, and my unit on ethics was the first part of the last session a week ago, which also included the units for grief/bereavement and final hours.

I haven't gotten any formal feedback from the attendees or my two colleagues yet. Our plan to get together afterwards was disrupted, but I expect we'll talk soon. They hope to offer the course each year, and I hope to join them.

Anywhoozle, here's my best attempt to reproduce my comments and material, including some of the comments and questions that the participants raised, which I've placed in parentheses.

Each image in this post was presented as a PowerPoint slide. I really dislike the way PowerPoint is generally used - but that's a topic for discussion at some other time. If I may just say two words here - Edward Tufte.

I used blanks with a pale blue background as placeholders between each image slide, so that the participants weren't staring at a slide any longer than I needed to make my point. I also embedded the YouTube videos within PowerPoint.

I'm presenting this material next week to a lecture class of first semester nursing students.

Whaddya think? Please lemme know. Thanks.

- - -

Good afternoon.

I call this class, "Ethics – Talking About Many People’s Lifetime of Work in Just 45 minutes!"

I want to start by pointing out that I have to balance our shared opportunity for useful and wide-ranging discussion with my need to maintain some small sense of order and control for the next hour or so. While I encourage each of you to share your thoughts and experiences as we make our way through this material, I ask that you not be too offended if I stop or re-direct you in the middle of a story.

Now, I’d also like your help with an exercise as we get under way – what words or expressions come to mind, what associations do you make, when I say the term, “medical ethics?” Please just go ahead and free associate. What comes to mind?

(The participants joined in with a number of terms and associations, including - confusing, controversial, human rights, morality, love, and dignity. I jotted them on a white board as they spoke, but regret that I didn't also write them on paper for later reference.)

OK, good. We’ll refer to these as we cover the information that I’ve selected to share with you today. This is a helpful guide.

As I was preparing for this discussion, I tried to come up with some pithy title slide to use as an introduction. I did a Google image search using the term 'ethics,' but really didn't find anything useful. Then I remembered this painting, which I picked up as a postcard years ago while visiting the Solomon Guggenheim Museum in New York:

Roy Lichtenstein, Nurse, 1964

Oil and Magna on canvas - 48 x 48 inches

Private Collection

I think it works well to illustrate the idea of 'ethics in nursing.' I mean, she's obviously a nurse, and she's clearly upset or disturbed or concerned about something - why not an ethical dilemma?

I'm also old enough that my women colleagues wore these caps, even though I didn't.

I already had the postcard and could have scanned it, but I knew it would be a lot easier to just grab a copy online. So I did another Google image search, this time using the terms 'nurse + lichtenstein,' since that's the title of the work and the name of the artist.

I found the image I wanted, but I also came across something unexpected that seemed to fit our topic here. So, I snagged that image, too.

I guess you just never know what you're gonna stumble across when you go poking around on the innertoobz, in this case a woman named Lichtenstein who recently tried to pass herself off as a nurse. Not a very ethical action, and apparently not a legal one, either.

I also came across a West Coast band from the 1960's that called itself, "The Ethics." Here's the A-side of a 45 they recorded:

And here's the B-side:

By the way, I'm not only old enough to remember 45's, I used to buy them.

OK, that was my introduction. Those were my title slides.

Let's get back to these associations you all made with the term, 'medical ethics.' It's a pretty rich mix, and there are a lot of thoughts and issues associated with them. I have a very brief – one minute, actually – film clip that will probably answer every question you’ve ever had about ethics and morality.

So, just to reiterate if you didn’t get the chance to write that all down:

“Mr. Kant claims that a true deontological ethics is based on a universal maxim that must never consider specificities of circumstance, character, or likely outcome.”

Great. That's it. This is all any of us needs to know about ethics. This answers every question you have. We can go home early.

Seriously – and really, I was just kidding when I introduced that clip – I think it’s essential that we establish some reasonable objectives about what we can accomplish here today.

Obviously, we don’t have a lot of time to spend on a subject that quite a few people have indeed dedicated their substantial professional lives to exploring.

Secondly, I’m not a scholar of philosophy or ethics, so what I thought would be helpful to share with you isn’t all that there is to know. Not by a long shot.

But I do frequently encounter ethical dilemnas in my clinical practice – I encounter them daily, if not hourly – and so I think it’s OK for us to at least take a stab at getting started.

As I was preparing this material, my first thought was “What do these colleagues already know”

I think that each of us does indeed have some set of internatized values that guide us in these matters; and that we can at least roughly articulate them. We each already know something, or we have well-formulated questions, as indicated by associations you made a few moments ago.

The question of “What do they already know?” was quickly followed by, “What do they want to know?” I suppose that, for some, a class titled, “Ethics” may be snooze inducing, or could be associated with the expressions like “waste of time” or “too deep for me” or “gibberish.”

But I suspect that everybody here has some degree of interest, or even fascination, with the topic – again, because ethics and morality touches so much of what we do in our professional lives.

Let’s take a moment just to get on the same page with some of our terms. While many people use the words “ethics” and “morals” or “morality” interchangeably, they’re related, but they’re not the same thing.

Ethics is the framework for understanding and explaining moral behavior. That’s a helpful distinction to make, if for no other reason than it will make our language more clear.

Ethics is the framework for understanding and explaining moral behavior.

Here’s an analogy to help see that this is not just a matter of semantics – ethics is like a recipe, while moral behavior is like a finished dish. Now, analogies can only go so far, but I think this one is helpful.

Think of a recipe, and of all that goes into it. There are ingredients and quantities and sequences and techniques which, if followed, can be reasonably thought to lead to a predictable result. A recipe can be a useful guide.

Some people depend on recipes. Maybe they need a recipe just for the first time that they try to cook a particular dish. Or maybe they follow a recipe exactly every time, because that’s how they cook.

Other people are more confident, or experienced, or daring, and they only look at recipe to get the general idea of a dish. They “know” how to cook, and maybe they can’t even explain in any great detail just how they cooked what they cooked, or what exactly went into it, or in what quantities.

Of course, anybody who completely disregards a recipe, or some other set of instructions, including the underlying principles of that recipe or instruction, risks making something that’s completely inedible – of even life-threatening.

So, when I said that I think that each of us already has some set of internalized values, some sense of ethics, that we already “know” something, it was like saying that everybody here already knows how to cook to some degree.

And even if you can honestly say that you don’t know how to cook, you most certainly can say that you know what you like to eat. That is, you have some sense of what constitutes sound moral behavior, even if you don’t know the first thing about Kant’s categorical imperitive.

And I’m pretty comfortable in saying that everybody here wants to know more – that you all would like to pick up a few recipes, if only to start spinning off some variations of your own.

The final question that I asked myself is really unanswerable – “What do people need to know and understand about ethics, to help them in the clinical setting later today, or tomorrow, or next week?”

Hopefully, we’ll begin to meet that last objective today.

Let’s look at a couple of examples at how ethics can be applied in the nursing profession.

First, there’s the idea of ethics as an admonition to “do the right thing.” That’s readily seen in the formal code for ethical begavior in nursing – the ANA Code of Ethics. Here's a screen snap from their website - I've added the address:

That’s how a lot of people see ethics, particularly in the context of health professionals – as a Code, or a series of rules for proper professional behavior. And that’s a perfectly fine and acceptable recipe.

Take a look at the first provision. There's got to be a reason why it's first, right? What does it say, exactly?

Well, to use plain language, according to the ANA code, we're obligated to care for anybody with any health need, no matter what.

And to get a feel for what that really means, let's each just take a minute to consider those things that make us most uneasy and uncomfortable about people, and about illness.

There's a lot of discussion in the media, for example, about illegal immigration, and about the rights, or lack of rights, that some say the people who enter this country illegally have, or don't have.

There's a state prison in my town, as well as a community hospital. And even though there's an infirmary in the prison, sometimes an inmate needs inpatient care. Now, the inmates in this particular prison are only there temporarily to be classified and ultimately placed in an appropriate facility elsewhere in the state. They include men who've been convicted of manslaughter, rape, and murder.

And what does the ANA code tell us? It says that we're ethically bound to provide care to anybody who needs it, no matter what, and no matter how uncomfortable we might be with our patients. The code makes clear that we can't ethically say, "No, I won't care for that person."

That's important to understand. Keep it in mind, because we all bump up against that ethical dilemma at some point.

This concept of ethics as a set of rules also touches on the notion of ethics as a set of shared values within a group or community, and it’s even possible to begin to see how ethics relates to law. Perhaps laws are more formalized, in the sense of being written and of setting out the consequences for people who violate them. And though this unit is described in the curriculum as ‘Ethics and Law,’ we really don’t have nearly enough time, and I don’t really have the expertise, to dig into that topic.

For our purposes, I think it’s enough to acknowledge a relationship, and to acknowledge that there’s a lot more to talk about – with the right people, and at the right time.

And not to get ahead of myself here, but later in this discussion I do plan to point you to some resources that can help you begin to flesh out in greater detail the terms and concepts and applications that I’m introducing here.

But to get back to some definitions or understanding of the basic term, ‘ethics,’ let’s think about ethics another way:

OK, trivia time: What did E.T. say to Elliot in this scene?

(here the participants offered comments that included, "I'll be back," "I love you," and "Don't be afraid.")

What E.T. actually said to Elliot was, “Be good.”

I think we can all relate to that. We’ve all had a parent or teacher or other adult urging us to be good and to do good. That’s probably how all of us were introduced to ethics, even if we didn’t know the term.

One popular application of ethics as an admonition to ‘be good’ can be found in The Golden Rule. Are you familiar with it?

There’s the story, probably apocryphal, of some biblical scholar being asked to provide some insight into what the bible was all about. After thinking for a moment he replied, “Do not do unto others that which you would not have done unto you. The rest is simply commentary.”

In other words, the many hundreds of pages and thousands of years of history associated with the bible, the countless hopes and dreams and faith and belief that literally, billions of people have placed in it as the most definitive guide on how to live – the whole thing, according to this nameless scholar from some unknown time, can be boiled down to a simple, but very powerful phrase: “Do not do unto others that which you would not have done unto you.”

I find it interesting that this version of the Golden Rule emphasizes a negative – do not do unto others – instead of the positive form ‘do unto others.’

I’ve thought about this at times, and I think I’ve come across something that helps to explain it, or that helps me to understand it. If you would indulge me for a moment, I want to share with you a very brief piece by the late Irish author Maeve Brennan, who among other things wrote for the New Yorker magazine’s Talk of the Town section from 1954 to 1981 as ‘The Long-Winded Lady.’


Maeve Brennan looks like a very compassionate person in this photo, doesn't she? She looks like a nurse.

This piece is from the September 18, 1954 issue of that magazine, and it appears in a collection of her work, also called The Long-Winded Lady. The piece is titled, “Painful Choice,” and it’s one of my favorite things to read. It’s a single paragraph. Maeve Brennan was one hell of a writer, if you ask me.

“I was in a new small supermarket the other evening, waiting to have my things put in a bag, when I saw a shabby tall man with red eyes, who had obviously been drinking since the cradle, tryingt to decide between a can of beans, a canned whole dinner, a canned soup, and a canned chicken a la king. He had thirty-seven cents or twenty-nine cents or some sum like that, and he was standing there with the four cans, glaring down at them and all around at the stalls of vegetables and fruit and bread and so on. He couldn’t make up his mind what to buy to feed himself with, and it was plain that what he really wanted wasn’t food at all. I was thinking I wouldn’t blame him a bit if he just put the cans back on their shelves, or dropped them on the floor, and dashed into the bar-and-grill next door, where he could simply ask for a beer and drink it. Later on it occurred to me that, putting it roughly, there is usually only one thing we yearn to do that’s bad for us, while if we try to make the effort to do a virtuous or good thing, the choice is so great and wide that we’re really worn out before we can settle on what to do. I mean to say that the impulse toward good involves choice, and is complicated, and the impulse toward bad is hideously simple and easy, and I feel sorry for that poor tall red-eyed man.”

I think it’s worth repeating - the impulse toward good involves choice, and is complicated, and the impulse toward bad is hideously simple and easy.

So, maybe that’s the biblical scholar’s point – that we should, above all, avoid doing harm because we have a tendency to do so without even thinking.

OK, so we’ve touched on ethics as rules guiding our profesional behavior, and as an admonition to either do good, or to not do bad. What else?

Well, let’s just return for a moment to the notion of ethics as the framework for moral behavior – ethics as a recipe, or set of recipes, or the method by which recipes are developed.

I was introduced to this notion of ethics at a conference I attended earlier this year, specifically that ethics is a formal and structured way to approach problems - ethical dilemmas - and arrive at a solution or decision, analogous to the scientific method. And, just to refresh our memories, here's a useful definition of the scientific method from the ever-reliable online resource, Wikipedia:

Scientific method refers to a body of techniques for investigating phenomena, acquiring new knowledge, or correcting and integrating previous knowledge. To be termed scientific, a method of inquiry must be based on gathering observable, empirical and measurable evidence subject to specific principles of reasoning. A scientific method consists of the collection of data through observation and experimentation, and the formulation and testing of hypotheses

Powerful stuff.

Most importantly, this is the definition of ethics, the way to understand what ethics is all about, that I want to impress upon you here. Take this and run with it.

Here's the conference on ethics that I attended. It was truly professional life-changing, and if any of you are interested in exploring ethics in greater detail, this is the place:

You can see that next year's conference date has already been set. Get on their mailing list.

Anyway, it was during a presentation at this course that I was introduced to the concept of ethics as a method for developing a path to moral behavior, or to arriving at a specific decision under specific circumstances, or to a solution to a problem – a moral dilemna - that could stand up to the question, “Is this really the right thing to do?”

And that’s what we’re so often faced with. We encounter problems, ethical dilemnas, either with patients, or with their families, or with nursing colleagues or other members of the team - we want to know what's the right thing to do?

These problems trouble us greatly, they unsettle us in ways that we sometimes can’t even articulate, except maybe to say something like, “This really bothers me.” Or “I’m not comfortable with this.”

And that’s probably the best clue that we’re dealing with a matter of ethics, and of moral behavior – we get very uncomfortable, and sometimes confused.

Well, since we work in a hospital, we know that often times the best thing to do in such a situation is request a consult, to get some new eyes and ears on the problem. And the same is true here. How many of you know that BWH has a consult service for just these situations?

I particulalrly want to point this out: "In 1996 the hospital staffed its first dedicated clinical ethics service, providing ethics consultation services 24 hours a day, 7 days a week upon request by any hospital clinician, patient or patient family member."

Now, just as I was only kidding when I showed the quick video about Kant, then said that we were done, I’m not going to just point you to a website and say that the only thing you need to know about ethics is that you can request a consult.

Don’t get me wrong – an ethics consult can be enormously helpful, even essential. In fact, (the head of the consult service) rounds on (my clinical unit) every week as a way to help us with cases early on. I’ve had the chance to work with her, and it’s made a huge difference.

(Here one participant described how a prominent surgeon in her unit publicly berated her for requesting an ethics consult in a difficult case, and said that she had exceeded her authority. It lead to a discussion best summarized as: a) some people are always going to be jerks, so we have to pick our battles and work with who we can work with; b) an ethics consult would still be appropriate to address the concerns and needs of nursing staff, separate from those of the rest of the team or the patient; c) the nurse had acted appropriately in requesting the consult, and the surgeon was wrong and unprofessional).

When I say that it’s helpful to view ethics as a method for solving problems, and for identifying decisions and solutions that are moral, I’m really talking about a way of thinking, and more importantly of engaging in an open dialogue that’s based in good faith. That means that everybody participating in the dialogue has to be honest, even to the point of admitting biases, such as “That’s against my religion,” or “I have a really hard time with people who x,y,z.”

If and when you do request an ethics consult, you’re going to find that much of the time is spent asking questions, and that the answers to some questions determine what other questions get asked and explored.

It’s helpful to have an understanding of some terms and concepts in order to participate in an ethics consults more thoroughly, and as a way to start framing and articulating ethical issues in our own minds.

At the risk of going down the wrong path of ‘relativism,’ I’m going to say here that many times, there’s no simple black/white, right/wrong answer to an ethical dilemna – there’s no one single point toward which everybody must strive. There can be any number of endpoints in a discussion involving ethics, each of which depends upon some set of values or circumstances or beliefs or conditions.

Now, ‘moral relativism’ is another matter, and that’s not what I’m talking about here. Moral relativism, as best as I understand it, is really a way to rationalize a decision or behavior – to make an excuse or explain why it’s perfectly fine to “Do as I say, not as I do.”

I guess a more clear way to say what I’m trying to say is this – if you can explain your thinking, your thought process as to how you arrived at a particular decision, and if your position is defensible and can stand up to objective scrutiny, then you’re on better ethical grounds that if you can’t.

Does that make sense?

Because that’s the discipline of ethics, and of thinking ethically. It’s not enough to say, “I decided to do it this way because that’s how I’ve always done it,” or “That’s what I was taught, it’s all I know.”

Now, again, if this is still all a bit ephemeral to you, please hang in, because I do have a specific frame of reference, a specific set of very useful guidelines that you can begin to implement into your own practice, that I want to share with you in just a few minutes.

But first what I really want to make clear is that, if you really want to understand ethics, I think it’s essential that you first understand that it’s a structured approach to thinking about problems. That’s both simple and complex, or perhaps it’s more appropriate to say that this is simple, but not easy.

Are we OK at this point in the discussion?

All right, let’s touch on some terms that we frequently encounter in the field of ethics, certainly as ethics applies to the health care setting. This isn’t a comprehensive glossary by any means. And, while terms are important, and while it’s important to use them in a consistent fashion, and in ways that others use them so that everybody’s comfortable that they’re talking about the same thing, it’s also important that we not get too hung up on too many terms too early in the process.

If you’re interested in things like this, any good introductory philosophy text on the subject of ethics can get you going; and there’s any number of online glossaries and course materials that you may find helpful.

Anyway, here are two terms that apply to rules of conduct, a professional code, the application of ethics that we discussed earlier:

The form that we most often encounter for the first term is beneficence - doing good, providing a benefit. We generally encounter the second term in the negative, that is non-malfeasance. Or, as the Hippocratic oath states: first, do no harm.

Here are a few other terms that you’re likely to encounter – I haven’t prepared a slide for them, but let’s take a few minutes to be sure that we have some common understanding, and some context for each term:

· Autonomy

· Competence

· Informed consent

· Substituted judgement

These are terms that we generally apply to patients and families, particularly in difficult situations.

We place a great deal of emphasis on autonomy, really on the idea of who has final control – that the patient is autonomous and has rights and is ultimately the one who decides what does and does not get done to them.

Now, the ability to maintain control and make decisions requires that the person is able to do so, that they’re competent, that they can think clearly and that they understand not only what’s being proposed, like a surgery or other intervention, but also it’s risks and potential outcomes as well as the likely outcomes if the proposed course or action is not followed.

Similarly, if a person is going to give a surgeon or a medical team approval, they really have to be fully informed, they have to be given enough information to be able to make a decision. They need to be told about all of the bad things that could possibly happen, no matter how unlikely, just as they need to be told of all the good things that could happen.

Otherwise, they’re really not informed, are they?

Finally, we get to situations where the patient isn’t really in any condition to make a decision. They’ve been deemed not competent, or they’re unconscious or otherwise unable to participate. That’s the time for substituted judgement. There are laws about who can assume this role, and in what order. There are also ways that a patient can designate someone to act as their surrogate, to make decisions in their place when they themselves are unable to.

But it’s essential to understand that ‘substitured judgement’ means that the surrogate making the decision is striving to make the decision that the patient would make, if the patient could make it. It’s not a matter of asking the surrogate, “Well, the patient can’t tell us, so – what do you want us to do?” It’s really asking, “What do you think the patient would tell us, if they could”

So many of the ethical dilemmas we encounter involve one or more of these few concepts.

That doesn’t mean that the answer will always be the same, because they’re not. And the unfortunate fact is that even though the ethical dilemma is right there in front of us, and even though we can even correctly identiofy the applicable term and concept, it doesn’t always mean that the dilemma is actually addressed in a thoughtful, ethical way.

It’s difficult stuff. It’s painful, and it takes time, and sometimes just raising the question can earn the questioner some unpleasant attention.

I guess Maeve Brennan knew what she was talking about, when she said, “…the impulse toward good involves choice, and is complicated, and the impulse toward bad is hideously simple and easy…”

Which now brings us to the wonderful magic wand that I want to share with you. The tool that by simply waving when times get tough, we will each solve everybody’s ethical dilemnas painlessly and forever.

Ah, ha ha ha.

Seriously, I think this can help:

This article appeared in the July/August issue of the Journal of Hospice and Palliative Nursing, which is the journal for members of the Hospice and Palliative Nurses Nurses Association. There's a copy of this article in the binders that have been prepared for you.

As an HPNA member, I can also send a copy of this article to you via email.

This is a rigorous work, and an important one. I urge you to read it often, in whole and in part. Make lots of notes, and give lots of thought to each paragraph. Make this one article your personal ethics text from this point forward.

I can't do justice to all that the authors say, and we don't have much more time left for that in any case. But here's one statement among many that, I think, gives us a firm ethical foundation, not just with end of life care, but in every aspect of our practice:

While it may sound simple to suggest that compassion serve as the underlying moral foundation to guide our response to suffering, true compassion actually requires great courage. It involves being open and available to suffer with, instead of recoiling from the suffering experience.

In other words, if we simply seek to truly be with our patients, if we just make every effort to build an open and trusting relationship with them, no matter what, no matter who they are or what they need, we will have a firm ethical foundation upon which to base our actions.

That's the magic wand - a genuine and trusting relationship.

Again, simple, not easy. If it was easy, then anybody could do this job, couldn't they?

I also just came across another journal article that describes a specific and very practical method for dealing with an ethical dilemma that we frequently encounter in clinical settings. It's directly related to end of life, but it's also useful in acute care settings more generally.

It's from the Annals of Internal Medicine, and is titled, Discussing Treatment Preferences With Patients Who Want “Everything.” The article by Timothy Quill and colleagues describes a common situation in which to apply the ethical foundation of building relationships that we've just discussed, because the kind of conversation Quill envisions can only take place in the context of a trusting relationship between the patient/patient's family and the clinicians.

I learned about Quill's article from Alex Smith, a palliative care physician who's also a blogger.

Finally, I'd like to close with this short piece from a story that I've really loved for a long time. The movie, actually a multi-episode TV series that I first saw on PBS's 'Masterpiece Theater,' is about the attempts by two expeditions to be the first to reach the South Pole early in the 20th century. The movie was based on the book by Roland Huntford.

This scene shows the leader of the Norwegian expedition, Roald Amundsen, as he finally reaches the Pole. I really like what he has to say, when his men ask that he give a speech to mark their accomplishment:

Thank you.

11/22 Update

I highly recommend Gail Rae's post at her blog, The Mom & Me Journals dot net, titled, "It's About Ethics, Isn't It?" It's rich and deep and thought-provoking and moving. A taste:

Once someone becomes aware that an Ancient and/or Infirm One needs extra companionship and care, it is impossible to avoid the daily intrusion of ethical dilemmas, all of which, from the very first dilemma regarding who should offer this care, are sticklers. They all involve the consideration of what you, as a caregiver or onlooker, can live with and what it takes to live with your decision. I think a handy rule of thumb is this: If living with your decision involves blocking out anything involving the one you know who needs care, like, for instance, blocking out the loneliness your Ancient or Infirm One experiences because you are not particularly present in her life, blocking out the possibility of medical mistakes being made because you've left medical advocation up to the medical professionals without question, blocking out the day-to-day life of your Ancient One because there doesn't seem to be a way to incorporate it into your own life, well, that's probably the point at which you need to question the decision you've made. I know, this doesn't make it easier.

Aren't the innertoobz wonderful?

Yes, they are.

Busy, busy, busy

Social Media Venn Diagram T-Shirt

by DespairWear

The 2010 Annual Assembly co-sponsored by The American Academy of Hospice and Palliative Medicine (AAHPM) and the Hospice and Palliative Nurses Association (HPNA), of which I'm a member, is being held in Boston next March, and I plan to attend. I've had the chance to participate in a pallative care/end of life conference, workshop, or similar activity pretty much every year for the last 7 years, and I'm looking forward to this one.

I've always valued professional conferences, because I find them energizing and I enjoy meeting people whose interests I share. I particularly appreciate meeting other health professionals who work with patients and families at end of life.

A few weeks ago, I was very pleased to learn from Drew's post at Pallimed about an opportunity to perhaps even participate in the conference to a greater degree.

A session titled, "Interactive Educational Exchange: Sharing Innovative Teaching Materials and Methods," had already caught my attention. I noted in my other blog last September that my final project in a course I'm taking on information technology in health care will be to continue developing Death Club for Cuties, supplemented by a paper on the subject of blogging.

For my money, blogging's where the action is right now.

Anywhoozle, I went ahead and submitted a proposal to present blogging as a tool for professional development, and for enhancing communication among palliative/end of life care givers. We'll see how it flies.

Now, I'm certainly not presenting myself as some kind of expert, or pioneer. There were many nurses, physicians, and others blogging about these issues long before I started. And there are plenty of people who do it better, and more consistently than me.

It's simply that as my practice has evolved, so have my interests. EOL blogging is pretty much where those interests intersect.

But, whether or not my proposal is selected, I'll be the guy with the black t-shirt at the Hynes Convention Center. And if anyone wants to experience the real Boston, I'm your tourguide.

Anywhoozle, this is from my submission -

Name of Educational Innovation: Blogging as a tool for professional development, and for enhancing communication among palliative/end of life (EOL) caregivers.

Setting/Program/School for which innovation is intended: The innovation is appropriate for both students and clinicians at all levels of practice; and is appropriate for physicians, nurses, social workers, and others involved in providing palliative and end of life care.

Degree or Certificate to which your innovation contributes: The innovation is not directly associated with any specific degree or certification, though it can be a useful supplement to a clinician’s course work and clinical practice.

Abstract

Blogging as a tool for professional development, and for enhancing communication among palliative/end of life (EOL) caregivers.

Background

Self-reflection, objective feedback from peers, and keeping current with new methods and findings are essential for professional development. Similarly, the ability to write effectively and to participate in a collegial network are important ways for clinicians to enhance their individual skills while advancing their professions.

Physicians, nurses, social workers, and others read and contribute to professional journals and other publications. They also teach and attend courses, conferences, and seminars

New channels for professional development are now possible because of the ubiquity of technology tools and the widespread use of the Internet.

Google’s Blogger and other related technologies mean anyone associated with EOL care can reach a worldwide audience of peers, and actively engage them in a rich and ever-evolving conversation using text, audio, video, and more.

Objectives of the Innovation

1. To support effective writing, self-reflection, and community;

2. To develop and expand a network of EOL bloggers;

3. To establish a resource center for current and potential EOL bloggers

Methods

I launched two blogs (blog names intentionally omitted from this abstract) earlier this year to explore topics of professional interest to me - EOL care, and nursing education - and will use this experience as a case study on how others can establish and maintain blogs of their own.

I will also use my experience to illustrate the development of a personal professional network, and I will describe some of the EOL blogs that have become an essential part of that network.

I will identify a range of no-cost and low-cost tools and techniques for EOL professionals who are considering blogging for the first time.

Finally, I will present an online resource center I have developed specifically for EOL bloggers.

Results

I have established online relationships with other EOL, health care, and general interest bloggers. Several shared blogging standards of practice have evolved within this network, including monthly grand rounds hosted by different EOL bloggers on a rotating basis. These grand rounds are used to highlight work within the field in both online and traditional media.

Discussion

The EOL bloggers in the network show unique writing styles, are interested in a wide range of topics, and approach their subject matter in many different ways, from essays based on personal experiences to more expository pieces that display the rigor associated with peer-reviewed journals.

Conclusion

Blogging tools are easy to use. What matters most in establishing a compelling blog is an ability to express oneself, a willingness to ask questions, and a desire to support and engage with others.

This innovation will assist EOL caregivers who wish to explore their professional development through blogging, and will help to increase and enhance the scope of online resources for EOL caregivers.

Failed Kidneys, Hangnails, Living, and Dying

There's some interesting discussion going on at two fine EOL/palliative care blogs focusing on the subject of hemodialysis and quality of life.

The posts by Alex at GeriPal and Drew at Pallimed were themselves prompted, in part, by an article in a recent issue of the New England Journal of Medicine that explored the impact of hemodialysis on the functional status of elderly patients.

I re-entered clinical practice by obtaining a position in an outpatient hemodialysis setting in 2002, after having spent the previous 19 years working with information technology in health care. It was a very challenging and rewarding setting, for lots of reasons. I think I'd probably be practicing there still if the pay was better.

A few years later, I was recruited to help develop online content for an associate degree nursing program. One of the units that I wrote dealt with diabetes, and I drew upon my experiences in hemodialysis while compliing that material. Here's a section from that unit:

His Death Began with a Hangnail

Of the people I introduced to you earlier in the unit, I was closest to Sid (not his real name). I always worked the shift that he came in for treatment, and he started on dialysis just a few months after I began working there.

Sid was relatively young, the divorced father of a daughter who herself was married with several children and who still lived within the state. His ex-wife had died of pancreatic cancer the previous year, and even before her death the family had reconciled to some degree.

Sid had a heart attack and triple-vessel coronary artery bypass about ten years earlier, as well as a more recent below-the-knee amputation of his left leg. He walked well enough with a prosthesis, and did not require a cane, though his activity tolerance was poor and he became winded after climbing a few stairs.

Sid now needed hemodialysis for his end stage renal disease, which itself was the result of extensive diabetic nephropathy.

I later learned from his daughter that Sid had at first been very anxious about coming to dialysis, even though he had already been through more hospitalizations and surgeries than most people. She also said that he quickly came to enjoy and value his time at the center, in part because it brought him in contact with the same group of patients and staff, three times each week.

That’s one of the advantages of working in this setting - consistent contact.

From the point of view of his dialysis treatments, Sid’s care was pretty routine and uneventful. He experienced very few of the common side effects of treatment, such as symptomatic hypotension and cramping, and his overall clearances (a measure of the effectiveness of his treatments) were generally good.

One day as I was initiating his treatment, I noticed that Sid had a small bandaid around the tip of his left ring finger. There was some slight redness under the proximal edge of the bandaid.

"What’s up with that?" I asked. "Oh, I had a hangnail the other day and pulled it out," he replied, showing me with a gesture how he had brought the cuticle to his mouth and bitten it with his front teeth.

After his treatment was underway, I asked him to remove the bandaid so I could take a closer look. He had a small ulceration, about the size of of a grain of rice, at the base of his fingernail, with redness and swelling down to his first knuckle.

I contacted his nephrologist, who ordered a dose of vancomycin for the final 30 minutes of his treatment. That was pretty much our standard protocol for dealing with infections in that setting - intravenous vancomycin, gentamycin, or tobramycin one or more times each week, with lab measurements of peak and trough values to maximize the effect while minimizing the dose.

But over the course of several weeks, Sid’s cellulitis slowly and inexorably made its way down his ring finger and onto his hand, where it affected his adjacent fingers and continued to his lower arm. The inflamed areas in turn became necrotic, until his entire left hand and forearm were hard and discolored.

Surgical intervention was ruled out, as Sid was deemed to be an unacceptably high risk candidate because of his compromised cardiac status - his left ventricular ejection fraction was measured at about 10% of total filling volume. Medical treatment of his infection was not successful because of his extensive peripheral vascular disease.

Also, because of his poor peripheral circulation, Sid had not had a successful AV fistula implanted for vascular access during his dialysis treatments. So, over the course of several months he relied on a tunneled double-lumen central venous catheter (CVC) as the portal for his dialysis treatments. CVC’s carry a high risk of infection, particularly septicemia, and one night during his treatment Sid developed shaking chills and a fever of 103, requiring immediate hospitalization.

I never saw Sid again after the ambulance picked him up that night.

As I later learned, the surgeons on Sid’s case presented him with the option of having his entire left arm amputated at the shoulder. They were candid with him about the fact that he might not survive the surgery because of his poor cardiac status.

They also noted that he would likely need to have his right arm amputated, as it too was becoming ischemic.

Sid decided that life without one or both arms was not worth living. He chose instead to have his CVC removed and his dialysis treatments stopped. He moved in with his daughter and obtained the support of hospice services for the last two weeks of his life.

The Rest of Sid's Story

The folks who initially supported the preparation of this material suggested that I provide some sort of summary paragraph to the unit. They felt that without such a summary, you might feel that you've been left hanging.

Fair enough, but after thinking about it I guess there are plenty of times where that's exactly was does happen - we're left hanging. We step into a situation that's probably been going on before we arrived on the scene (or before the patient's presented to us), we do what we can and need to do, the patient moves on, and we never know how it all turns out.

Can you live with that? It's a rhetorical question. You'll have to live with it, at least sometimes.

In the case of Sid, we were able to obtain bits of information from the unit's social worker, who herself obtained some information from the hospital's social worker, who helped to direct Sid's final placement and home care. We learned what I wrote in the unit - that he had taken himself off dialysis and had gone to his daughter's home.

A colleague on staff brought in a copy of Sid's obituary (he lived in the next town from where the dialysis unit was located). A couple of my colleagues went to the funeral home, though I did not. Having dialysis staff attend patient wakes and funerals is actually something that happens pretty frequently. As I mentioned earlier, there's a strong sense of community and continuity in this setting. While this community and continuity also raises issues and challenges regarding professional boundaries, there's often the chance to "close the circle" and not be "left hanging," and it's a valuable opportunity.

And just so I don't give you the impressions that working with patients who have end stage renal disease is relentlessly dreary, there are also some "happy endings," like when a patient gets a kidney transplant. In such a case, we all celebrate with them.

And Sid's decision and outcome, while sad, wasn't dreary to me. He took control, and made the critical decisions himself, knowingly. He also spent his final weeks with his daughter and grandchildren, in the comfort of their home, with enough medication and support to be without pain. Isn't that how we'd all like to go?

We got a card at the unit from Sid's daughter, thanking us for taking care of her dad in what turned out to be his final 5 months, and letting us know that he really came to enjoy his time at the unit. I sent his daughter a sympathy card of my own, and told her that I was glad for the chance to meet Sid. He really was a nice guy.

We also spoke individually with each of the other 11 patients who shared Sid's treatment time, so that all of us could acknowledge what had happened. That's just another part of the sense of community and continuity that I mentioned earlier.

So, the folks who worked with me on this unit had a point - I hadn't told you everything in this instance, and I had indeed risked leaving you hanging. So there it is, for now.

"It's not just a body..."

Robert Bouchie (far left) leads a moment of silence in the anatomy lab before a body is cremated and returned to the donor's loved ones. The pine box also contains notes of thanks from the students.

- photo by Kalman Zabarsky for Bostonia

Our family is the first on either my wife's or my side where every member has at least a bachelor's degree, so we get a fair number of the kinds of alumni magazines at our home that we never saw as kids - including from UConn ("Go, Huskies!"), Harvard ("Don't be so smug."), UMass/Boston ("The campus that political corruption built."), and the Massachusetts College of Art and Design ("Home of the Fightin' Picasso's - Go Pablos!").

My wife went to grad school at Boston University ("We don't have a slogan."), and while idly thumbing through the Fall, 2009 issue of Bostonia I came across Caleb Daniloff's wonderful article, "Parting Gifts." The subhead says, "Robert Bouchie adds one final lesson to the training in the med school's anatomy lab: how to honor the dead."

Bouchie is a BU alum and former football defensive lineman. He worked as a pharmaceutical salesman before earning a degree in mortuary science. He has directed the morgue at the Children's Hospital Boston, and now manages the anatomy lab at BU's School of Medicine and coordinates the school's anatomical gift program.

The online version of the article includes a video featuring Bouchie and the work in his lab, where he tells the students that each person on the dissecting table is, "your first patient, your first instructor."

There are two philosophies in anatomical donations...sometimes the people that have the position that I have, they don't want to sensitize the students, they don't want them to buy into that this was a person that was a friend, father, neighbor, grandparent. They want the students to just view it as a vessel...as a tool.

I'm from the other side of the street. I expect them to care as much as I do. It's not just a body in front of them. It's a real person, and they should never lose sight of that fact."

In the weeds

Part of my garden, before the frost

Time flies, especially when I'm trying to write for this blog on a regular basis. It's been a month since my last post, and I've been caught up in too many other matters to turn my attention here. I want to change that, because this blog is a priority, as is keeping current and finding new bloggers who're also writing about end of life care.

A substantial chunk of my recent writing energy went into completing the third assignment for my class on information systems in healthcare. Sure, it's not a huge paper by any standards - but most of my time was spent on trimming it down. I find that cutting words and focusing a theme is harder than trying to say lots about more.

I've also been working with my daughter, who graduated from art school and is trying to put together some ways to earn some money doing what she loves. I'll post a link to her site when it's ready.

I'll be joining some colleagues on Thursday to participate in one of the introductory ELNEC modules. There are 30 nurses from all areas of the hospital who've signed up for the 3-session, 9-module course, and I've been asked to help answer a question that often arises, namely, "What can we do to involve our colleagues and improve end of life care on our own unit?"

I'll be conducting the module on ethical/legal issues during the final session in early November, and will also post the materials and notes here at that time.

This is the hospital-wide ELNEC course, and not the ELNEC course and team building program that'll take place on the neurosciences ICU where I work. Three colleagues have so far stepped forward to join that effort, and there are three others that want to talk with me about it more. I expect to formally start the program right after the holidays with 6-8 members.

Finally, I just want to mention the excellent Palliative Care Grand Rounds hosted earlier this month by the bloggers at GeriPal. This series has been a great opportunity to catch up with, or learn about, the many fine bloggers who're working in and writing about palliative care and end of life matters.

I particularly want to recommend the series, 'A Matter of Life and Death,' at Flyp, an interactive online magazine, that was highlighted at GeriPal. Flyp uses multiple media to tell the stories. It's a great example of what's possible out here on the innertoobz. Check it out.

I wanna take a minute to celebrate

They also won it all in 2007

I first proposed developing an end of life care team in January, and while my nurse manager and others have been completely supportive from the start, it's taken until today to get the official word out to colleagues with this announcement and recruitment email:

Hi Folks:

This is a lengthy email, but here are a couple of quick questions to decide if you should continue reading it -

1.Do you want to develop or enhance your you current skills in caring for patients and families at the end of life (EOL) as a central part of your clinical practice on 9C/D?

2.Will you commit to actively participating in a series of half-day educational programs to develop your EOL care skills?

This commitment will require you to read on different topics from a variety of sources in preparation for the sessions, actively participate in workshop exercises and group discussions, and engage in self-reflection through writing and story telling.

The expected outcome will be that you will be capable of providing expert EOL care; review and assess current policies regarding EOL care; help develop new policies and tools to improve EOL care on 9C/D; and be a visible and active resource to our colleagues regarding EOL care.

"The End-of-Life Nursing Education Consortium (ELNEC) project is a national education initiative to improve end-of-life care in the United States. The project provides undergraduate and graduate nursing faculty, CE providers, staff development educators, specialty nurses in pediatrics, oncology, critical care and geriatrics, and other nurses with training in end-of-life care so they can teach this essential information to nursing students and practicing nurses. The project, which began in February 2000, was initially funded by a major grant from The Robert Wood Johnson Foundation (RWJF). Additional funding has been received from the National Cancer Institute (NCI), the Aetna, Archstone, and California HealthCare Foundations, Open Society Institute, and the Oncology Nursing Foundation."

Jerry, a qualified ELNEC trainer, will direct a series of 3 four-hour sessions starting in the coming months to develop an EOL nursing care team specifically for 9C/D patients, families and fellow staff. The educational program is based on the ELNEC curriculum.

You can learn more about ELNEC here.

As a member of the 9C/D EOL Care Team following your training, you will provide direct EOL care to patients and families and also be a visible and active resource to colleagues when you are not directly assigned to a patient and family at EOL.

You will help with the early identification of potential ethics consults, and provide monitoring and follow-up on patients who die on 9C/D on behalf of the New England Organ Bank, the Bereavement Committee, and other related groups here.

Finally, you will help assess and develop tools, policies, and practice standards for EOL care on 9C/D; and help improve the overall quality and effectiveness of the EOL care we provide on our unit.

Jerry developed this project as a result of his own clinical interest in caring for patients and families at end of life, and based on his qualifications and professional development.

Jerry has been a nurse for 33 years. He earned a diploma in nursing from Catholic Medical Center in Manchester, NH in 1976; a bachelor of science in nursing from Boston State College (now Umass/Boston) in 1981; and a graduate certificate of special studies (CSS) in health policy from Harvard University in 1987. He is currently enrolled in the master of science in nursing program at St. Joseph's College in Standish, Maine.

Since 2002, his professional development has focused exclusively on EOL care through programs and training at Beth Israel Deaconess Medical Center, the MGH Institute, the Harvard Medical School Center for Palliative Care, the Harvard Center for Bioethics, and ELNEC.

Jerry's 14 years of clinical experience in critical care and hemodialysis has brought him into frequent contact with patients and families at end of life. He also spent 19 years in the information technology field, working with computer systems in clinical settings.

Jerry became an ELNEC trainer in October, 2008

The ELNEC curriculum is divided into 9 distinct modules -

Module 1 - An Introduction to Palliative Care
Module 2 - Pain Assessment and Management
Module 3 - Managing Other Symptoms at End of Life
Module 4 - Ethical and Legal Issues
Module 5 - Cultural Considerations
Module 6 - Communication Skills for End-of-Life Nursing Care
Module 7 - Loss, Grief, and Bereavement
Module 8 - Achieving Quality Care at the End of Life
Module 9 - Preparation and Care at the Time of Death

ELNEC trainers can adjust the sequence and specific focus of the individual modules to meet the needs of the audience. The first half-day program for the 9C/D EOL care team will include the content from the modules on Ethics, Communication, and Grief/Loss to accommodate several non-nurses who have expressed an interest in attending that session.

The two subsequent sessions will focus on content from the other modules specific to nursing practice.

Each half-day program will include a mix of lecture, case studies, class discussions, and media presentations. You are expected to prepare by reading the essential materials; to actively participate in discussions; and continue your learning beyond the classroom through self-directed reading and research, and self-reflection via journaling and story-telling.

At the conclusion of the program you will be recognized as being ELNEC trained, which includes a special pin for your ID badge or scrub stop. Note that this is not a certification or credential, but it is an explicit acknowledgement of your accomplishment. You will also earn CEU's for 12 contact hours of approved content, and become an essential member of a team dedicated to improving and maintaining the quality of EOL care on our unit.

If you're still interested, please contact via email to me , with a copy to Vince and Jerry.

In your email, please describe your own interest, experience, and goals pertaining to end of life care. It will be very helpful for you to include a brief story about a case where you were called upon to provide EOL care. That experience can either be a positive or negative one. In either event, indicate what you learned from it.

In the meantime, if you have any questions or comments specifically about this program, please ask Jerry via email or in person. For any logistical questions please contact me.

This email will help me understand the level of interest and allow me to plan appropriately.

Thanks for reading through to this point, and for your consideration.

Shaun

It's a big moment for me, personally and professionally.

And the Red Sox are looking pretty good heading into 2009 postseason play...

Update 10/2: Here's another reason for me to celebrate - I just got my first reader comment in quite a while!

A little respect

I met the Surgeon General. He offered me a cigarette.

Here's an email I got today from Christian Sinclair, a hospice and palliative care physician, and co-editor of Pallimed.

We have the December slot (for Palliative Care Grand Rounds) open if you think your Death Club blog would be up for it?

Great job writing so far. I have been meaning to highlight a few of your posts but have not gotten to it yet. I plan on submitting some for the upcoming PC Grand Rounds at Geripal.

I most certainly am up for it! I'm grateful for the chance.

I'm also glad to learn about GeriPal, and have added it to my blogroll.

And since I'm in a Rodney Dangerfield kind of mood...