Friday, November 13, 2009

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.