Welcome to the Nursing World Shared Practice Forum.
I'm Dr. Elaine Meyer.
I'm a nurse and clinical psychologist at Boston Children's Hospital.
I am the Director of the Institute for Professionalism and Ethical Practice, and I'm also an Associate
Professor of Psychology at Harvard Medical School.
It's my privilege today to be here with Dr. Pamela Grace.
Dr. Grace is an Associate Professor of Adult Health and Ethics.
She originally trained in the UK.
She completed her baccalaureate and her master's degree in nursing in the United States.
In 1998 she completed a PhD in philosophy with a concentration in medical ethics, and
she has been actively involved in teaching medical ethics and moral reasoning for the
past 20 years.
She's lectured extensively and published widely.
So Dr. Grace, what led you to your interest and your focus on philosophy and ethics?
Well, first of all, thank you very much for inviting me here, Elaine.
It's really a privilege to be able to talk about this.
So the reasons I got into pursuing a PhD in philosophy and ethics was that during my course
of work in intensive care units and critical care units, and then after that as an advanced
nurse practitioner in adult health, I came across so many problems in practice that I
didn't feel prepared to address.
I found them very troubling.
I often felt that I was all alone.
I had no one to ask, what's going on here?
And mostly there were problems of not getting the patient the sorts of things that I thought
they needed.
So there were all sorts of obstacles to me giving good care to patients.
And there were no ethics resources around in those days, or if there were ethics resources
they were sort of the purview of the physicians.
They could call an ethics consult, but the nurses were sort of left on their own to try
and figure out how they should resolve these problems.
So in practice, and especially in intensive care unit practice, there are many obstructions
to getting the patient what you need.
It might be that there aren't enough staff, or that the family is pressuring the patients
to go along with treatment they don't want, or the physicians arguing with each other
or the team not talking to each other, people not being on the same page, lack of resources,
and so on and so forth.
But I often felt that I was really a very poor nurse, because I didn't know how to address
these problems.
And we didn't tend to talk to each other about them.
We might complain about being overworked.
So Pam, it really was your personal experience with moral distress then, and that sense of
isolation that really prompted you to go on for your doctorate?
Yes.
And as part of the PhD actually, I read an article that criticized nurses for using the
term "advocacy" as sort of a mantra, because the woman who wrote the article said that
nurses shouldn't use that to further their profession.
And I thought, well, that sounds very strange, because that's not what I'm doing.
So I decided that I would look at the idea of advocacy in a lot more depth.
What does it mean?
And I came to the conclusion that really, for nurses, it means that every action you
take on a daily basis is about trying to do the right thing for patients.
And so if you can't do those-- like if you have your clinical judgment, your knowledge,
your experience, and you know what the right thing to do is and you can't do it, it's very
troubling-- and especially if you don't know how to articulate that in a way that gets
everybody else on the same page.
So that led me also to look at the issue of moral distress that nurses face.
Many nurses are reporting that they're distressed.
I'm wondering if you could tell us and our audience a little bit about what are the ingredients
and what comes together to make a situation of moral distress for nurses?
So just to give some background on what's been done on moral distress more recently,
it started off that Andrew Jameton, who was a philosopher who taught nursing ethics to
nursing students, realized that a lot of the things they brought up in class were really
about how troubled they were by what we saw in practice, and what they felt they ought
to be doing but weren't able to do.
So he coined the phrase moral distress in 1984 in his book on nursing ethics.
And his definition of moral distress was the negative responses that occur when you know
the ethically appropriate course of action but can't carry it out.
Since then he's realized that many different health care professions-- and in fact, people
in everyday life-- experience moral distress when they're obstructed in doing what they
feel is morally warranted, what kinds of actions are good.
Pamela, may I ask you-- are nurses particularly vulnerable to moral distress compared, say,
to other practitioners?
I would say that the research shows that people who are actually at the bedside and most in
tune with patients do suffer a higher level of moral distress, probably because they face
these situations over and over again.
They know the patients.
They have a connection with the patients.
Often they're the ones that are actually pushing more medicines or doing more needle sticks
or doing more interventions that are painful or uncomfortable.
I would say probably the biggest hurdle for ICU nurses is this idea of having to do interventions
that cause the patient suffering when it becomes obvious that the patient is not in a particularly
good place where they would perhaps be better off having comfort measures.
But nurses often aren't heard when they try to articulate that in a multi-disciplinary
forum.
Or the physicians perhaps are more focused on trying to address the immediate situation--
try and get their numbers better, try and get their physiological signs better.
So I'd say in intensive care units that's, perhaps, one of the reasons that nurses experience
moral distress more.
And in fact, I could give you some other examples.
The research on moral distress in adult settings really surrounds end-of-life decisions, working
with incompetent other providers, and inability to have good communication, or there are mixed
messages.
The family members are getting one message from the physician, another message from the
nurse, another message from the family, and they don't know who to trust or who to believe
in.
And then I would say witnessing what they consider unnecessary suffering of patients.
Also, when their environments of work are unsupportive.
Sometimes people call them toxic environments.
And one of the big issues has also been inadequate staffing, when nurses don't have enough bodies
to do the work.
I wonder if I could turn now to our colleagues around the world and ask a question.
First, could you state your city and your country location?
And the question is this.
Are these the sorts of situations that cause moral distress for you in your settings and
countries, or are there other types of problems more frequent or concerning that cause moral
distress?
And now we're back with Dr. Pamela Grace.
So these different aspects, these factors-- are they cumulative?
Yes.
So there has been work that's been done, especially in neonatal intensive care unit settings for
example, that show that over time, if you don't resolve the moral distress, then the
amount of suffering you personally have from the moral distress goes up.
So there are a couple of things that happen when nurses experience morally distressing
situations.
They either distance themselves, because this is having a cumulative effect on them so they
can't take it anymore.
So then they kind of numb their own emotional feelings, which is bad for patients.
Or they leave the profession, which is bad for patients.
So it's a real problem for hospitals, nurses, and the patients when nurses actually experience
moral distress.
And we do also have some evidence to suggest that nurses that are more sensitive are more
likely to experience moral distress.
We also have some emerging evidence-- Could you say, what do you mean by the nurse being
more sensitive?
So nurses who kind of really understand what their role is in providing good patient care
are more likely to experience moral distress, because they kind of realize the full weight
of the responsibility for the patient.
And we also know that there's some emerging evidence to show that in fact, women suffer
moral distress more than men.
There's a couple of studies that are starting to show that.
They haven't been validated, but it has to be pursued further, I think, because it's
an important additional insight.
I would say for pediatric settings, since this is a pediatric open forum, that there
are slightly different issues.
So for one thing, pediatric nurses really overall suffer less moral distress than nurses
in other settings.
And it's unclear what the reasons are, but it may be that children more often recover
and go on to live good lives.
But it's not true for nurses who work in the neonatal intensive care or other intensive
care units in pediatric settings or in oncology.
So their moral distress experiences tend to be decisions about care direction, redirection,
prolonged life support of an infant in the face of its dying, family wishes getting prevalence
over what the baby's best interests are, once again, incompetent colleagues and physicians,
and caring for a ventilator-dependent infant when nobody will say no.
There also are some studies in the pediatric intensive care units and oncology studies
that show that the most morally distressing are those problems that recur over and over
again.
So the most frequently experienced are also the most distressing.
And that makes sense if you think of the idea of moral distress being a crescendo thing,
that the more you experience the higher your level of distress is.
I think the other part of that is continuing life support when it's obviously not in the
child's best interest to do so.
So the setting-- so you said that pediatric nurses experience less moral distress than
nurses taking care in adult settings.
But there's a few settings in particular-- the PICU setting, the NICU setting, as well
as oncology setting-- so those would be really where we see more end-of-life situations and
intensive care.
So it's a niche within pediatrics in general.
Yes.
So Pam, can you say what happens when this moral distress that you're describing is unresolved,
is unchecked, the nurse is unable to address that.
What happens?
So, they can have physiological problems.
They can have loss of appetite, be depressed, be anxious-- all of the kinds of things you
get with a stress reaction.
They can also become psychologically depressed and have a sense of loss of personal integrity,
because they feel like they're not good nurses.
It must be something wrong with them.
Why can't they get it done?
Because often, people will lead them to believe that, also.
Why aren't you doing that?
Why aren't you getting your work accomplished?
So instead of addressing the situation, you turn it in on yourself and feel like there's
something wrong with you.
And if that goes on long enough, why would you stay doing a job that's so unrewarding
when you came into nursing to do a job that's supposed to be rewarding?
What this is the antidote to this moral distress?
How can we combat this?
So from my perspective, as a long-time nurse, nurse educator, and someone who has worked
clinically in clinical ethics, I think there are lots of different ways to address it.
But I think the single most important thing in addressing moral distress is to help nurses
see how they can actually act to resolve issues.
And the action may not be in the moment, because in the moment, when something's occurred and
you can't resolve it, then you have to do the best you can.
But after the fact, in discussing what went on, you can then plan to make sure that you
have ways to address it in the future.
So you can't do that on your own.
I think we could educate nurses to be attuned to the responsibilities.
We could give them the nursing knowledge that they already have.
We could help raise their consciousness.
But I think it's also important that they understand ethical principles and how to analyze
a situation so that they can look at the different parts of it and think, how could this best
be resolved?
And so that they have a way to articulate to the other team members how best to proceed,
and what's going on with the patient and that they have an important role.
I wonder if I could turn now to our colleagues around the world and ask a question.
First, could you state your city and your country location?
And the question is this.
What resources does your institution have to help educate nurses about moral distress
and moral agency?
And we're back now.
I know in some of your writing you've talked about how important it is for nurses and other
professionals to have the language of ethics, that they feel well-versed in that kind of
language and can understand problems and that moral distress, and be able to, in a sense,
translate that into ethics language and then to be able to address it ethically.
Could you say a little bit more about that, because you've done quite a bit in terms of
your special clinical ethics nursing residency.
Could you say how would we do that?
Over the years, my colleagues and I have become really aware that so many nurses were suffering
from moral distress or needing to have some clinical ethics expertise, or feeling like
they needed the tools to be able to address the problems they were seeing.
Each year we had a day-long clinical ethics program, and there were always like three
times as many people would want to come to it than could.
So it made us think we needed to do something more.
So we developed a program that got funded by a HRSA grant.
And it was under the leadership of Ellen Robinson, who is a PI.
But then Dr. Martha Jurchak and I were co-PI's, and we developed a program that basically
offered nurses one day a month-- one whole day a month-- ethics education where we used
self-reflection, we used the American Society of Bioethics and Humanities Curriculum for
Clinical Ethics Consultants, the idea that nurses have goals that they are trying to
gain or they're trying to help patients.
And we made this curriculum that had some didactic, some communication modules, some
clinical practice in terms of high fidelity simulation role play.
So everything's fitted together-- the didactic content, the role play, the simulation, and
then the self-reflection on the cases after the fact.
And we did that for nine months.
So the nurses had a very long program where they slowly but surely developed their ability
to look at cases, analyze them, and find ways to resolve the problem.
So as part of the actual project, we had a 16-hour mentored practicum.
So each of the faculty helped a certain number of nurses that were in the program to start
ethics rounds, to be on ethics committees, to do the sorts of things that would sustain
their knowledge development.
The program was incredibly empowering for the nurses.
The fact that they could talk to each other transformed the practice in ways that they
have no idea it would do.
And at the end, the evaluations showed that we had actually decreased moral distress and
increased their confidence in their moral decision making.
We had them write a narrative at the beginning of the program why they wanted to be in the
program.
Those narratives were incredibly powerful.
At the end of the program, we had them write narratives about how the program had helped
them in the practice, and we asked them to give us examples of how their practice had
changed.
We're in the process of analyzing those now, so we don't actually have the end result of
that.
But I think there is little doubt from that program-- and the development of it-- that
we actually did increase the ethics expertise in those hospitals where it was offered.
Do you have any data to suggest that in not only decreased moral distress for the people
who were the residents and went through the program, but the units in which they worked?
Have you been able to demonstrate that or look at that?
Because it was an education and not a research project, we have not actually been able to
demonstrate that it actually did increase the ethics or the ethical climate in the institution
as such.
However, the number of units that now have nurse-led ethics rounds-- even interdisciplinary
ethics rounds-- has tripled, I would say.
And also, in order to keep sustaining this, every three months there are what we call
continuation sessions so that they can come back.
But one of our ideas also was that we would build a cohort on the unit of more than one
person so that they would have support for each other.
Pam, I'm wondering-- short of nurses being trained through the whole nine months, would
you have any suggestions for educational initiatives that could really help to address moral distress
that might be able to, in a sense, sort of fit into the infrastructure of a unit, let's
say in hour-long sessions?
Do you have any suggestions for that?
Yeah.
I have lots of suggestions.
Obviously, it would be very difficult for institutions to replicate that 9-month study
or that 9-month offering as such, because we had incredible faculty.
For one thing, you wouldn't get such a concentration of faculty in one place, I think, anywhere
else.
However, I think there are lots of things that can be done to change the climate of
units and the institution.
So I think one thing is that nurses really do need to school themselves or make sure
they understand how ethics fits, how the language of ethics fits, into all of this.
I think they need to access someone who has some kind of ethics expertise.
Now, it may be that there isn't any in the hospital, there's no ethics resources.
But most universities have on their faculty philosophers who do ethics or do bioethics
or do humanities.
They're very used to helping people figure out what their problems are.
So I would say that accessing someone who has those skills and joining forces so that
you tell them what your problems are and you have them help you think about it is one way
to do it.
I definitely think you need to build on the communication skills.
People need to understand that they really have strong responsibilities to articulate
the patient's perspective.
And they're the ones that know the patient's perspective, because they're the ones at the
bedside.
And for nurses to use already the knowledge they have, but to channel it into a way that
they can look at cases, parse out what the problems are, and start addressing them as
a collaborative.
You can't do it on your own.
So I would say monthly meetings, short meetings, but in a sustained, ongoing basis where you
gradually introduce the language of ethics, the principles, how ethical analysis helps,
how communication allows you to speak more clearly to the issues.
And your own self-reflection, because I think a lot of what happens is people aren't aware
of the biases they form and how they influence the way they're looking at things.
So a lot of moral distress also may be that a person thinks what's going on is not right,
but in fact if they step back, analyze what's going on, parse out the different issues,
they would realize, well, actually, it's this person's choice to make this decision, not
mine.
I can facilitate the decision.
I can provide the information.
I can get people to talk to each other.
But to understand where actually the decision-making lies, for example.
So you're really talking about a culture shift here-- transformation of a culture that really
does incorporate the everyday ethics of clinical practice, and having us really understand
everyday ethics and the language of ethics so that we can again, in a sense, combat some
of our own moral distress and understand it better.
I wonder if I could turn now to our colleagues around the world and ask a question.
First, could you state your city and your country location?
And the question is this.
What opportunities are available in your institutions or countries for nurses to develop their ethical
decision-making skills?
Are nurses members of ethics committees or other leadership committees in your settings?
And we're back now.
I've heard you speak a little bit about the difference between emotional distress and
moral distress, and I wonder if you could just maybe share with our audience the difference.
Yes.
So we all have emotional distress about a whole lot of different things that have nothing
to do with being unable to do the right thing.
We have emotional distress about getting a divorce, losing your cat, just not getting
enough sleep.
That's our distress for our problems.
But moral distress is really more about the distress you feel when you know you have a
responsibility to somebody else and you can't accomplish that responsibility.
So they're very related, but I think one of the things that does happen to nurses when
they have no outlet is that they let the emotion take over.
And that clouds what they do, instead of saying, OK, so this is the emotional reaction I'm
having to this problem.
But what is it actually about this problem that's an issue?
How can I look at this in a reasonable way so that I can say, yes, this is what's going
on here, so then I can articulate it.
But people don't listen to nurses when they have an emotional reaction.
A physician's not going to listen to you if you say, oh, Mrs. So-and-So doesn't want this.
That's not going to solve the problem.
But what might solve the problem is saying, so, I've talked to Mrs. So-and-So about her
issue, and she's made a decision that she would really like comfort measures rather
than continuing on, for example, with chemotherapy, because the few extra months that that will
get her is not going to help her.
If I articulate it in clear terms and articulate her prospective in clear terms, then I have
made a dent in the problem.
And it may be I have to bring other people together.
It may be that we have to talk about what really the goal is.
Why are we doing this?
But I think nurses really do know a lot more than they often will speak up about.
Or if they speak up about it, it's because they're so annoyed that it's the emotional
reaction.
And that doesn't necessarily change the situation.
So I think it's also helping nurses to really figure out why they're feeling what they're
feeling.
So maybe even for nurses to be able to recognize when they're experiencing moral distress?
Yes.
And being able to name it.
I think all of this work that's been done on moral distress has been very helpful for
nurses, but the problem is it's almost been too helpful.
So now every time they feel a bit uncomfortable or emotionally upset, it's moral distress,
when moral distress is very particular thing.
If you know what you're supposed to be doing in your role as a nurse, and you're not doing
it.
And you're either not doing it because somebody's stopping you doing it, you're not doing it
because you don't feel like you have a right to speak up, or you're not doing it because
there's nobody on the unit supporting you.
One person is actually the voice of reason, but everybody else is used to doing it a different
way.
So they're going to keep doing it and you're the odd man out.
I'm curious what advice you might have for leadership personnel-- let's say nurse managers
on the unit, physician leadership on the unit.
How might they help to recognize moral distress, and what might they do to help in their individual
units or institutions to help with this?
That's a great question.
I think, actually, collaborative work is the best way to go about it.
But in hierarchical institutions it's very difficult to make sure all the players are
heard.
So I would say if it comes to administration, if it comes to the physicians, they need to
treat the nurses as people who actually have something to say.
They have the patient's perspective.
Without the nurse, a physician can't do his or do the job properly.
And without the physician, the nurses can't do his or her job properly.
It takes all of us to resolve some of these really complex problems that arise in modern
hospitals where there's all sorts of things we can do.
But the question is really, should we always be doing the life-sustaining treatments when
in fact the patient would be better off having comfort measures or having their wishes honored.
I wonder if I could turn now to our colleagues around the world and ask a question.
First, could you state your city and your country location?
And the question is this.
Are NICU and pediatric nurses in your setting encouraged to speak up and collaborate with
others?
If not, what gets in the way?
And now we're back with Dr. Pamela Grace.
So Pam, what strategies can individual nurses at the bedside employ?
I would say first it requires recognizing that moral distress is something that is not
something that you should have to be dealing with, that there are ways to empower yourself
to change things.
I would say continuing education is an important part of it.
I would say find a mentor who has some expertise in ethics to help you.
I think that you should be looking in the literature to see what's been written about
some of these problems.
There is a lot in the literature about moral distress and how it should be addressed.
Also, there are specialty nursing interest groups that often have a forum.
So I would say you can't deal with it on your own.
You need to find other like-minded people, and then you need to devise ways to go about
addressing the issue.
And I would say you need to access an expert if you're not an expert yourself.
You've talked about moral agency as being sort of the antidote.
So would you like to say a bit about that?
Yes.
So we do know that when people know how to address morally distressing situations, that
that reduces the moral distress and helps to prevent residual.
So I would say that moral agency is the ability to act to overcome problems that cause moral
distress.
So if you see yourself as someone who can make change-- even if it's only incremental--
if you see yourself as someone that is able to represent the patient's point of view,
that is able to speak up and articulate what the problem is in a given case, then you are
less likely to experience moral distress.
But I would also say that moral distress probably comes and goes, that we can't avoid all morally
distressing situations and that we just live in a world where things happen all the time
that seem to be beyond our control.
I'd stay in those situations, it's best to actually discuss the case after the fact with
people who perhaps weren't involved in it who could help you think through how you might
do things better next time.
I wonder if I could turn now to our colleagues around the world and ask a question.
First, could you state your city and your country location?
And the question is this.
What opportunities are there for nurses in your settings to develop their moral agency?
As examples, their knowledge of professional goals and responsibilities, their knowledge
of ethical language and decision-making.
What about opportunities for guided discussion and other opportunities?
And we're back now.
And I understand that you've prepared a bibliography for us.
So that will also be available to our audience.
I have, it's not a complete list.
So I don't want people to think that I might have left somebody off.
But I have made a reference list of some of the seminal, or early works, on moral distress,
describing some of the tools to measure moral distress.
And then I have also some of the more recent studies on moral distress that I think would
really help people understand what's going on.
And then really, the objective is to empower yourself to actually do what you know you
ought to be doing, what your code of ethics says you should do.
Well Pam, I want to thank you so much for this interview.
I really enjoyed it thoroughly, and I'm sure that our OPENPediatrics audience similarly
is really going to give this a lot of thought.
Thanks again.
Well thank you very much, Elaine.
You've been very good interviewer, and you made it very easy for me just to address some
of the important issues.
And I just want the audience to know that there is help out there for you.
You're not alone.
So here's to your moral agency.
Well put.
Thank you very much.