Ethical decisions in times of crisis

Welcome to Effective Nursing in Times of Crisis, from Johns Hopkins University.

In this interview, Dr Patricia Davidson talks to Dr Cynda Rushton, Anne and George
Bunting Chair in Clinical Bioethics at Johns Hopkins University. Dr Rushton begins by
identifying some of the core issues relating to ethical practice that nurses must
contend with every day, including issues around transparency, accountability, and
balancing the nurses duty of care against risk to personal health and well being.

Patricia Davidson:
It’s my great pleasure today to be having a conversation with Dr. Cynda Rushton. I
know she's been really busy over the last months, as we as a world, as a community,
are dealing with the ravages of COVID-19. So I thought I'd start off our conversations
firstly, Dr. Rushton, with you identifying what are some of the core issues that are
relating to ethical practice that we think of every day, regardless of COVID-19? What
are the things that nurses think about when they go into work every day?

Cynda:
Well, Trish, I think there's so many ethical issues and most of them have been
intensified now with the COVID pandemic, but you know, we often are concerned
about how do we respect the autonomy of our patients to make decisions for
themselves? How do we involve them in meaningful ways to understand what
matters to them? How we inform them about the choices that they have in terms of
their treatment, the idea of informed consent, and how do we help them make good
decisions based on often confusing and conflicting information?

I think we're often really struggling with how do we balance the benefits and burdens
of the treatments and the technology that we have? And certainly in the United
States, we have a lot of technology that we use in very innovative ways. And some
people really benefit from that. But then there are others who end up being tethered
to that technology and nurses struggle with, you know, am I using these resources in
the best way and, you know, am I harming this person more than helping? And I think
those kinds of decisions really weigh heavily on nurses because we are often the
ones who are delivering the treatments and we see firsthand the consequences of
that technology on their bodies and on their psyche and on their families. So I think
those are always present.

And I and I think there's also, for, I would say every nurse, there's concerns about
justice and fairness and the inequities that are in our systems, the ways in which
certain groups of individuals are routinely denied access to certain kinds of
treatments or even basic health care. And we see the impact of the social
determinants of health on our patients in very profound ways. I know in my own

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work and hospital, you know, concerns about how do we discharge a person who
doesn't have a home to go to? How do we actually put in place safe discharge plans
for people where there aren't any community resources or there isn't family to be
involved in providing their care outside of the hospital? How do we take care of
people who are particularly vulnerable, people who have substance use disorder,
who have chronic conditions, who have been, you know, systematically and
structurally denied care for whatever reason, or basic human respect. So I think all of
those issues are present all the time for nurses, and trying to find that balance of how
do we uphold our ethical obligations in the midst of this chaos that's created by this
pandemic?

Patricia:
So, you've identified some really important issues that are more pronounced at this
time. And I know there's been a lot of discussion and debate about access to
ventilators access to PPE. I'd be really interested in your thoughts about how we
approach treatment allocation. Because to me, as someone who's worked in trying to
prove and promote advanced care planning, in some ways, as well as clinicians
dealing with the challenges of resource limitation, it's really cast the spotlight on the
importance of shared decision making, and sometimes clinicians make robust
decisions about not using invasive treatments.

Cynda:
So embedded in your question are a lot of sub questions. So, you know, the issue of
resource allocation, you know, arguably, we are allocating resources every single
day. Nurses are allocating their resources by how they use their competence, their
skills, their knowledge, for which patients. But now we're in a situation where we
actually have scarcity and it's not just perceived scarcity, it’s real scarcity, in that we
really don't have enough ventilators, we don't have enough medications in many
instances, we don't have enough personal protective devices. And we don't have
enough people, staff to actually provide the kind and magnitude of care that people
need.

So I think one of the tensions that many clinicians experience right now is we are in
this pandemic and typically our ethical framework has been focused on the individual
patient. And so we have focused on their autonomy, respecting their choices, and we
have very much had a shared decision making model. What's happening now as we
are in this pandemic, and resources are becoming scarce, we're having to enlarge
our ethical framework to prioritise questions of resource allocation above autonomy
of the patient. And that is a place where many clinicians experience a lot of moral
distress because it feels like we're abandoning our patient, when in fact, what we
have to do is figure out who's most likely to benefit from the resources that we have,
and how do we allocate them in a way that is fair and equitable?

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That question is a tough one, because there are many ways to answer that question.
I've been involved now for the last five weeks, pretty much seven days a week, with
an interprofessional group of people trying to answer that question for our hospital.
How do we put in place and create a framework where we can actually have some
principles that help guide us? So some of the principles that are part of that are, the
idea of fairness. And what's interesting about fairness is based on whose perception
of fairness, so one of the really important elements of our framework is that we want
to get feedback from the people who will actually be affected by the decision, so the
community. And we have been really fortunate to have colleagues who have done a
five year process of engaging our community to help us understand how we ought to
make these decisions.

Another piece of this is, is how we balance our duty to care. You know, as clinicians,
we have a special duty to the public to provide the care that we are able to provide.
But that's also balanced against the risks to our own health and well being, and I
think that's a place where a lot of people are struggling right now. We also have a
duty to steward our resources in a way that is responsible and that it reflects the
sense of equity and accountability, and that we do that in a transparent way. And the
idea of transparency then takes us back to how do we engage the community? How
do we share the limits of the things that we have available with the people who will be
affected by them? And also this idea of consistency and proportionality. Are there
certain people who may be disproportionately disadvantaged and certainly in our
country, we're seeing lots of data about certain groups of people, African Americans,
Hispanic origin, who actually are being affected by the virus in ways that others are
not. And we know there's a lot of reasons for that, but to just realise that this reveals
some of the big fissures in our healthcare system and in our society.

And then the last piece is accountability. You know, that we have to be accountable
for the decisions that we make and for the exceptions that we make to our usual
standards of care and finding a way that we can do that without feeling like we're
having to choose one or the other.

Patricia:
So, certainly this time has cast your specialty, clinical bioethics, into the spotlight.
And just today I was reading about some hospitals in Sweden who are saying, you
know, if you're over 60, you won't be intubated. And I just was interested, particularly
for people who will be doing this course who may be in institutions or countries where
they don't have this access to experts like you. Just help us a little bit to understand
what is the mental framework that you and your expert group are approaching this
with? That would be useful.

Cynda:
Well, you raise a really important question. And one of the things that's been debated
a lot about in these frameworks is what role should age play or disability

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and how that could potentially be a way that we discriminate against certain groups of
people.

I think that when we think about how do we factor in all those issues, one of the
things that we have tried to put in our framework is using more objective criteria,
rather than some direct subjective data like race, age, sexual orientation, disability,
as the way to determine who ought to get care. So we're using more objective,
physiologic data, short term survival, looking at who's most likely to survive this event
in the short term, and also thinking about the long term because there are people for
whom they may survive, but they're going to be left with pretty serious impairments in
terms of their both physiologic and quality of life.

So those are some of the things, you know, how do we make it more fair by not
allowing our biases to slip in, which they will. But to have processes that reassure us
and the community, that we're actually respecting each person as a human being?

Patricia:
Excellent points and I think applicable across all care settings. I now just sort of
wanted to turn our focus to nurses and healthcare professionals. There was some
really, kind of, profound data today came from the CDC saying that 20% actually 19%
of people infected with the COVID-19 virus were healthcare professionals, and
certainly from Italy and other countries and China we've seen, never before in my
experience, healthcare professionals dying from this virus, and so there are obviously
some things related to the potency of the virus and the transmission. But let's focus
on healthcare professionals and what they should be considering as they go to work
every day.

Cynda:
So a really great question. And, you know, there's a lot of ways to answer it, and
there's not one answer. I wish there was, but there's not. You know, I think there's not
a healthcare professional that I know that doesn't prioritise their work. You know,
we're a kind of ‘all hands on deck’ group. And at the same time, I think there's
something about this particular virus that people are really worried about the exact
same things you're talking about. You know, am I going to work and putting myself at
risk? So one of the things I would offer and this is a position statement by the
American Nurses Association on risk versus responsibility and they offer four criteria
that nurses ought to consider to determine ‘Do I have a duty to provide care under
these extreme circumstances?’

The first one is that the patient is at risk of significant harm if the nurse doesn't assist.
The second one is the nurse, his or her care is directly relevant to preventing that
harm. The third is that the nurses’ care would probably prevent the harm to the
patient, and you think about what nurses do every day. You know, we

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are often the people that make sure patients have safe passage. But the fourth
criteria is a really important one:

“the benefit to the patient will outweigh any harm the nurse might incur and does not
present more than an acceptable level of risk to the nurse.”

So the part of that that's really important is determining what is an acceptable level of
risk. And I think individuals will have to do their own discernment to figure out what
their own threshold is. And there may be reasons that their threshold is different than
someone else's, because they have underlying health conditions themselves, they
may have other responsibilities that are weighing heavily on their decision making.
What's important, I think, is also that we not create the standard that everyone has to
be heroic all the time. It's not possible. And I think by doing that, we can often create
a kind of shame and blame kind of environment that doesn't help anyone in a
circumstance like this. We need to create a foundation and an environment of
diversity so that people have the support and the ability to weigh for themselves and
that the community will support different decisions without it feeling as if someone
has abandoned their responsibility.

The other piece of advice I would give, and we've been doing moral resilience rounds
in the last three weeks, and one of the comments that I heard was nurses were
saying, you know, I don't feel like I'm doing enough. I've been redeployed. I don't feel
like I'm, you know, really serving in the way that I normally would on my unit. But I
think there's this opportunity for us to really honour the efforts that we're making, and
that all of the efforts that every one of us makes are valuable. It's not as one is more
or less, they're all important. And so being able to try to find, you know, what is it that
I can uniquely contribute here, and how can I take steps to minimise my risk. And I
think that that balance is a really important one.

Also, it's important to say that our duties are not absolute. And there is a reciprocal
responsibility of our healthcare organisations to provide the sources that are
necessary to keep us safe in our jobs. And both of those are important elements that
we have to assess for ourselves. But organisations also have to be accountable and
responsible for making sure that they're minimising the risk to the extent possible for
nurses at the frontline.

Patricia:
I think it might be useful at this time, Dr Rushton, for you to talk a little bit more about
moral resilience. And for our listeners, I'll provide context back to your book, but I
think it would be useful just to define that resilience, and, you know, for people who
are maybe listening to this webinar in low resource settings, you know, how can
people undertake activities to augment more resilience?

Cynda:

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Really great question. You know, a lot of what we've been talking about is the moral
distress that comes from recognising what you ought to do, and knowing that you
can't do it because the resources are just not there. And it creates a sense of distress
that we're failing all the time. And it's a very serious burden. And yet, we know that
individuals have within them an innate resilience, and we wouldn't be nurses if we
weren't.

But in this context of moral distress, it's really about how do we preserve our integrity
in the midst of this moral adversity, and there's so much moral adversity right now
that it can easily feel hopeless, it can feel as if there's nothing I can do. But at the
same time, what we see is that, and we see it in our colleagues every day, there are
people who are able to engage their inner resources, and their ability to accept the
limits of what is in front of them, and to actually turn toward what is possible and be
able to say, ‘You know, there's real benefit in being able to relieve the suffering of my
patient, even if I can't prevent their death’, and being able to recognise that there are
limits right now that we would find unacceptable in other circumstances, but there's
still a lot that we can do to actually make a difference in the lives of our patients.

Nurses are often the last thread of compassion. And we may be the last person they
see as they are dying, many of them alone now. And so to harness that sense of why
am I here, to me has always been a resource to go back to, why am I doing this work
in the first place, because that's both an orientation and a resource to draw. And so
we can orient toward that and to find a way to confront the realities in front of us not
to deny them or diminish them or pretend they're not there, but rather just to keep
focused on what it is we can do. And there is a lot we can do. And I find that one of
the things that happens a lot when we're morally distressed is our nervous system
gets very dysregulated and we get afraid. We find ourselves feeling really distressed
and distracted, but finding ways to get our nervous system calm, back to balance, so
we can think clearly, so we can actually make good decisions where we can learn,
we can decide where should I put my time and attention and my competence and
knowledge in a way that will best benefit people.

And another part of that is having frameworks like we were talking about of how to
think through these issues, but importantly, our own self stewardship. How do we
actually invest in our own well being? And it's interesting, because in both our ANA
code of ethics and in the International Council of Nurses code of ethics, we have an
obligation to our own well being, and that is a moral mandate. It means it's not
optional. So we are in a situation where we have to constantly balance the needs of
our patients with being exquisitely aware of the limitations that we have physically,
emotionally and spiritually to address these issues. So not expecting ourselves to,
you know, always be able to meet every challenge and know what those limitations
are, and investing in our own well being because we are human beings deserving of
that. But also because it is how we will be able to serve others. We're not any good to
anyone if we are depleted and completely exhausted. Eventually we won't

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be able to serve at all. So it's that balance, and giving ourselves permission that it's
okay to actually invest in our well being, and to do so without any shame or blame,
but actually keeping in mind the reason we're doing it is so we can serve others.

Patricia:
I think they're excellent points, and I think, particularly as this pandemic spreads
across the world into healthcare systems that are much more fragile, I think your
words will be even more pertinent, because, as you mentioned, here in the United
States, we have a lot of technological devices, you know. Some studies, you know,
10% of the patients in ICU are on ECMO. I mean, we know that those treatments
aren’t broadly available across the world.

So I thought I would just sort of close our conversation, talking about dignity. And I
think that is an important value that we uphold for our patients and our families and
for ourselves. For nurses around the world who will be struggling at this moment, who
are balancing benefits and burdens, but we know have chosen this profession
because they want to serve others, can you maybe provide us with some closing
words of wisdom on the role of dignity in healthcare, and how, in spite of scarce
resources, and in spite of all odds, we can strive to optimise dignity?

Cynda:
You know, I think dignity is an internal state. And it is not something that other people
confer on you necessarily. I think that dignity comes from within. And so we are in the
situation of actually honouring that inherent characteristic of every human being. And
it may be that in some situations, that's the most important and the only thing that we
can offer in that moment.

And, you know, dignity is, as you mentioned, it is something that we value. Respect is
the way that we show dignity and respect for every human being. But I think that
extends to our patients, how we can pause and create a moment of connection in the
midst of maybe the most important act that we can do in our work. How we show that
respective dignity from other colleagues, the patients’ families, or ourselves, that
really at this time, it's coming back to the real basics, and that dignity is a requirement
for every human being. And we have a chance sometimes to see beyond the disease
to the person underneath and to extend to them that honouring that they deserve, no
matter what the circumstances are.

Patricia:
Well, I think this is a great way to finish this interview. I've been trying to focus on
giving thanks as a way of trying to build my internal resilience. And I see on the
media some really heartfelt examples of just the small things that nurses have done,
of using FaceTime on their personal phone, and even some very bold statements
from Boris Johnson on the nurses who, he is a smart man, had worked out, were
really responsible for diligently monitoring his health care. So as we close this
interview, I give thanks to you, Dr. Rushton, for the great work that you do and

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thank you for helping shepherding us through really these truly unprecedented times.
So thank you very much.

Cynda:
Thank you for inviting me.

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