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Seven “Between-the-Lines” Questions All
Ethics Consultants Should Continue to Ask
Edmund G. Howe
Edmund G. Howe, MD, JD, is Professor of Psychiatry and
Director of Programs in Medical Ethics at the Uniformed Services University of the Health Sciences in Bethesda, Maryland; and Editor in Chief of The Journal of Clinical Ethics.
Disclaimer: The opinions or assertions contained herein are
the private views of the authors and are not necessarily those
of USUHS or the Department of Defense. Conflicts of interest: none.
At the Bedside
ABSTRACT
Clinical ethics consultants (CECs) must know key moral
principles and have adequate psychosocial skills. This is,
though, not enough. They must also have and hone “betweenthe-lines” skills that will change over time. This article discusses seven of these skills that CECs need before, during,
and after consultations. They have in common the unusual
primary goal of maximizing CECs’ ability to bond with the
patients and families with whom they consult. A focus on relationships, rather than on ethical outcomes, may paradoxically enhance the possibility of achieving an ethical outcome.
In this issue of The Journal of Clinical Ethics (JCE), in “A Pre-Doctoral Clinical Ethics Fellowship for Medical Students,” Katherine J.
Feder and colleagues describe a fellowship in
clinical ethics consultation that they developed
for third- and fourth-year medical students.1
Two
of the students have already acquired national
healthcare ethics consulting certification (HECC) from the American Society for Bioethics and
Humanities (ASBH). The six months of training
is a significant part of students’ time in medical
school. Hopefully, other medical schools will
follow suit.
In “Competencies and Milestones for Bioethics Trainees: Beyond ASBH’s Healthcare Ethics Consultant Certification and Core Competencies,” also published in this issue of JCE, Kimberly E. Sawyer and colleagues propose a series
of competencies and milestones to track the
progress of students in clinical ethics consultation training programs.2
Such objective measures
are now commonly used in medical education.
Competencies and milestones help teachers better assess students’ learning, and help teachers
to determine how much independent clinical responsibility they should allow students to have
when they see patients.
There are, however, “between-the-lines”
skills that clinical ethics consultants (CECs)
must learn and continue to learn as long as they
practice. The need to continue to learn exists
because these skills are open to CECs’ on-thespot, somewhat subjective judgments, and thus
can always be improved. How CECs apply their
subjective judgments may most profoundly affect the outcomes of patients and their family
members. CECs’ responses may change what occurs in the hospital, such as patients’ life or
death, and may wholly alter what patients and
their families experience going forward. Family
Edmund G. Howe, “Seven “Between-the-Lines” Questions All Ethics Consultants Should Continue to Ask,” The Journal of
Clinical Ethics 32, no. 2 (Summer 2021): 87-96.
88 The Journal of Clinical Ethics Summer 2021
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members, for example, may continue to experience deep joy in their relationship with their
loved one, rather than feeling lasting bitterness.
Perhaps the greatest skill is to be able to ask
the right question at the right time, even when
it may be painful to ask. Further, CECs may need
to be able to admit in some instances that what
they have been doing not only hasn’t worked,
but most likely won’t work in the future. For
these reasons I will discuss seven questions that
are particularly important for careproviders to
ask. I will present these questions in the order
in which careproviders are most likely to confront them, provide a real-life example of each,
and then explain how, having asked the question, a careprovider might best proceed.
A common thread underlies all of the questions: the goal they share is to enhance bonding
between patients and careproviders in every
consultation. This priority is, I suspect, uncommon, but it may be more important than any
other factor in an ethics consult. Such bonding
is always critically important in its own right.
This bonding may enhance how the parties involved in a consult experience their lives going
forward. Finally, this priority may increase the
equality and autonomy of patients and their family members. The primary goal should be, in my
view, for CECs, patients, and family members to
leave the hospital walking together, hand-inhand, if possible. This result is modelled in an
article published in this issue of JCE, by Amy E.
Caruso Brown, “The Last Bastion of Paternalism? A Reflection on Proceduralism, Power, and
Privilege.”3
Brown describes working as a pediatric oncologist, treating a child, “Mateo.” His
parents, working closely with her, decided that
it was time to allow Mateo to die. Several months
later, the parents continued to express their gratitude to Brown. This is an end for which all careproviders should strive.
QUESTIONS TO ASK
BEFORE A CONSULTATION
Should We Wholly Ally Ourselves
with the Patient and Family?
When they begin a consultation, CECs may
offer to wholly be the ally of patients and family members. This means, CECs should explain,
that they will do all that they can to further the
interests of patients and family members, as
patients and families see them. Further, CECs
can say that they will do this regardless of their
own personal views.
Careproviders, other than CECs, may have
other priorities, for example, to limit costs. For
example, careproviders are strongly urged to
consider costs when they prescribe medications:
they may prescribe a drug that is less likely to
be effective because it is much less expensive.
Patients and family members may be able to
question such decisions by appealing to the hospital or even in court. They may not do this,
however, without the urging and support of a
CEC. By making such an offer to help, CECs offer to be with patients and family members as
they make an appeal, and even to assist when
they pursue additional interventions to which
they may be entitled.
Thus, being an ally to patients and families
may include going with them to the courts or to
the press. It may take courage. This is a virtue
that Sawyer and colleagues rightly deem to be
required in CECs, and it is this kind of support
that Brown provided to “Allison,” a patient who
opposed her surgeon’s recommendation. Allison
was 30 weeks pregnant, and her fetus would die
unless she had a cesarean section. But the fetus
had serious problems and might not have survived. Further, Allison would face serious risks
from a c-section. She said she was willing to die
if that would give her fetus any chance to survive. Brown did all she could to assist Allison. I
will follow this brief summary of Allison’s situation with aspects of Brown’s analyses, which
are key to the questions I will consider below. I
will extend Brown’s insights to suggest what
careproviders might do in similar cases.
Brown’s Analysis
Brown provides many reasons that we might
want to take on the same kind of role she did, to
be an ally for Allison. Brown acted as she did in
large part because she believed it was what she
should do, ethically. I will go further: I urge careproviders to support patients’ requests even
when these requests go against careproviders’
values. I will explain why shortly.
Brown states that performing surgery has traditionally been entirely at the discretion of surgeons, although patients and families “might be
free to seek a second opinion, depending on social, economic, and educational capital.” In saying this, Brown highlights two critical points.
The first is that patients may already have the
means to appeal a surgeon’s decision. For ex-
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ample, Allison sought help on social media.
Thus, careproviders who support patients may
be supporting them in what they already can do
for themselves. But it may be less likely that patients will do this without the support of another,
such as a careprovider. The support of a careprovider may therefore alter patients’ outcomes
and increase their equality.
Brown notes, too, that even though patients
have some right-to-appeal options, they may not
be able to access them, or at least they may have
difficulty accessing them. In this case, Allison
lacked the financial means to go to another state,
where she would have been able to get the csection she wanted. Patients may not be able to
offset the obstacles they face, even with the support of a careprovider. But we may be able to
help patients overcome limiting factors in other
ways, and this may increase their equality.
Brown states that although surgeons’ refusals to do surgery are “treated as objective clinical decisions,” their decisions may actually not
be completely objective. Rather, their decisions
may be “influenced by clinicians’ own characteristics, such as the tendency to be more conservative or more aggressive.” Brown accurately
tags the possibility—and a grave risk for patients
and for all of us—that whether or not we have
surgery or any other intervention, what we get
depends on our clinicians’ personal “characteristics,” as Brown puts it. When it is possible that
certain aspects of an outcome were arbitrary, we
may come to be concerned that any given outcome may have been shaped by arbitrariness.
When we act wholly as patients’ allies, this risk
may be greatly reduced. Brown states that although doctors may make decisions for patients
that, more often than not, are the best decisions
possible, doctors’ perspectives may lack nuance.
They may be subjective. When careproviders
take on the role of being wholly the allies of
patients and their families, this may add nuance
to their decisions and increase their objectivity.
How to Best Do This
If we want to let patients and family members know that we will put their interests first,
we should say so when we first meet them. This
is important because patients and families, like
all of us, may be especially influenced by first
impressions. In this case, patients and families,
after hearing this, may be more open to seeing
us in a different, more positive light, and less as
members of the staff and possibly as hospital
“enforcers” who will oppose their interests
when we must. After saying that we will place
their interests first, we should add that we must
tell other staff what we are doing, in a timely
manner, to give staff enough time to pursue any
avenue opposing this that they see as necessary.
By this I mean that, in some instances, patients’ and families’ interests will not match our
own. A colleague of mine described how a 15-
year-old boy, in the hospital for an appendectomy, told staff that sometimes his father got
drunk at home, and he would cover his dad with
a blanket as he slept on the couch. The staff was
concerned that this might constitute child abuse,
and believed they were required to report it to
Child Protective Services (CPS). The staff called
hospital security to make sure the father did not
remove the boy from the hospital before CPS investigated. CPS did not find abuse or neglect,
but the boy and his father may not have seen
the staff as their allies after this.
Another example that might evoke this kind
of staff response is from Myra Bluebond-Langner’s book, The Private Worlds of Dying Children. The parents of an older girl would not tell
her that she was dying.4
(This case will be discussed further below, and I will ask whether
every careprovider should be expected to be able
to address this kind of situation optimally.)
When this kind of thing happens, it is the staff’s
burden to intervene. What is absolutely to be
avoided is to say we will be the ally of patients
or family members through much or most of a
consult, until we feel we can’t support what they
say they want. Should this happen, they may
feel betrayed and abandoned. It is possible to
give support, even when we morally oppose
what they want to do. This approach contradicts
a priority that is commonly espoused, that careproviders, in most if not in all cases, can and
should put our own ethical values first. When
we will not follow our own views, but will prioritize the views of patients and families, we
should tell them that we will do this, in advance.
We should say explicitly that it is not our views
as careproviders that should count the most, but
their views.
Patients and families may still not believe
us, but saying this may add to our credibility
with them. They may wonder, why else would
we say all this unless we mean it? We may do
this best, paradoxically, by asking patients and
families to not trust us, unless and until they
have reason enough to choose to trust us. We
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might say, “Please don’t trust me, unless and
until you believe that you should!” We could
say this with a smile, connoting that, even as
we say it, we know that patients should trust
us, and we hope they will.
On the other hand, we could wait to make
the same offer later. We could do it, for example,
midway through a consult, as this may be when
a disagreement first arises. This is illustrated in
the following case, which I observed. Family
members didn’t want the patient to know that
he was dying. Staff presumed that they could
work this out with the family, but found they
couldn’t. The family arranged to stay by the patient’s bedside through the night to insure that
staff wouldn’t tell him that he was dying, although the family asserted, unequivocally, that
the patient did not want to know. The CEC who
was consulted advised the staff to—literally—
break through the human barricade the family
had created around the patient’s bed, to tell him
he was dying. The staff followed this advice, and
the family was enraged. It might have been better for the CEC to wholly support the family.
It is up to us to take the initiative to offer to
be allies to patients and families. Before doing
so, we could ask ourselves the kinds of hypothetical questions that forensic psychiatrists and
psychologists ask when they must determine
whether an alleged offender acted in response
to an irresistible impulse. (An irresistible impulse is a defense that is similar to a plea of temporary insanity: that the person was unable to
control his or her actions.) One question that is
asked in these circumstances is whether the alleged offender would have acted in the same way
if police had been “at the offender’s elbow.” If
the alleged offender would have acted in the
same way, it is likely that she or he was responding to an irresistible impulse.5
In the same way,
we might ask patients who request a treatment
that staff do not consider appropriate whether
they would request the same treatment if they
had a specialist on their condition and a lawyer
at their elbow. If they say their request would be
different if those experts were at their side, this
may suggest that we should offer to be their ally.
This does not mean that the patients we assist will succeed in having their requests met.
But having an ally may soften any negative experiences they have. When the patient’s family
members wanted to protect him from learning
that he would die, for example, the CEC could
have spoken on the behalf of the family—had
the family wanted the CEC to do that—and the
CEC may have been able to negotiate a resolution short of the staff’s forcefully breaking
through the family’s barricade at the bedside.
When patients or family members feel the
support of even just one person, their resentment
or embitterment may lessen. Having this support, patients may see that they and the staff are
part of the same team, seeking a workable solution. This change may be more possible when a
careprovider takes their side. This is illustrated
in the following case, from my own experience.
A woman in her later years was in a coma in the
hospital. The staff thought she was dying or that,
at least, she would never wake up. She had not
responded to any of the treatments she had received for some time. Staff still did not know
what was wrong. Since they had nothing more
to offer and since, as they thought at that point,
she would never get better, they recommended
to her family that they withdraw her life-sustaining treatments and allow her to die. I was
the CEC in this case, sitting at the end of a long
rectangular table. On my left side were five family members; on my right side, five staff. The
patient’s five adult children all adamantly opposed the staff’s suggestion. She could recover,
they protested. The family leader said, “After
all, Ma could get well.” I said, after a short pause,
“Yes, she could.” The same family member then
reversed herself. She said, for the first time anyone in her family had, “Maybe, though, the staff
is right.” Her siblings almost instantaneously
agreed. The mother’s treatment was withdrawn.
But she miraculously got well and left the hospital, walking. Even when this rare acceptance
of a team’s suggestion does not occur, the family (or patient) may gain from knowing that the
CEC made an effort to be their ally.
The case of the young woman described in
Brown’s article who was not able to convince
the surgeon to perform a c-section to save her
fetus may be an example of this. She had Brown,
her CEC, supporting her. She left the hospital
profoundly disappointed, but she still had the
experience of having Brown by her side. Might
this have made a difference later on in her life?
Should We Ever Wear Two Hats?
Ideally, a second question we should consider before we first offer to assist a patient or
family is when, if ever, we should be willing to
wear two hats.6
In this context, wearing two hats
means that we would, on the one hand, seek to
meet a patient’s or family’s needs fully, while,
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on the other hand, we might oppose their interests. An example of how this may occur in a
consult is when we or other staff believe that a
patient or family seeks to deceive us in some
way for secondary gain. Staff may feel compelled
to play detective, as it were, while they treat the
patient. They may want the CEC to wear two
hats too. They may be concerned that the patient or family seeks monetary compensation;
for example, they report that the effects of an
illness or injury are worse than they are.
Or, as another example, a family mourns that
a patient is in a coma or is incompetent. As the
patient’s surrogates, they state that they know
the patient would want to be kept alive. But staff
may suspect a hidden agenda, namely that the
family wants to continue to receive and benefit
from the patient’s regular Social Security checks.
If we wear two hats and don’t tell the patient or
family that we are doing this, we deceive the
them. My intent is not to explore whether or not
doing this is justifiable. My intent is to raise the
question of whether we can fully meet a patient’s or a family’s medical needs while we investigate them or their motives. I believe we
can’t. Our nonverbal behavior, if not what we
say, may betray us. If I am right, CECs who offer
to be the ally of patients or family members
should not take on such conflicting roles.
It is entirely plausible that patients or family members may glean evidence of our dual loyalties, if we have them. Patients sometimes reveal that when they are with their careprovider,
they scrutinize every word and nonverbal gesture, to try to discern if their careprovider is hiding something from them. For example, a careprovider may be hiding information that an underlying cancer is causing the patient’s symptoms. In these situations, patients may detect
even the most subtle cues and connotations.
Given this possibility, if, as we investigate our
suspicions about a patient, we distance ourselves
from the patient, all of the gains from all else
that we have done to assist that patient in the
past may be lost.
QUESTIONS TO ASK DURING
A CONSULTATION
Should We Start a Consult with
Mediation Approaches?
Staff may or may not call in a mediator before they request an ethics consultation; if they
do, a mediator may not always be available. If a
mediator is not available, we may benefit patients in ways that a mediator could by using
mediation approaches at the beginning of the
consult. What mediation approaches add to ethics consults may be open to controversy;7
Autumn Fiester asserts that these approaches add
immensely, and she highlights the distinctive
goals that mediation approaches may help bring
about.8
Even some careproviders who have not
received training in mediation approaches may
be able to use them effectively. For example,
when all of the stakeholders in a consultation
are able to identify their deepest wants, they may
be able to come to an agreement on an ethically
acceptable outcome. When this occurs, though,
it may further different values, as illustrated in
the following case.
Different Values
This is a case I observed. A man in his thirties was dying from cancer. His doctors predicted
he had at most six months to live. He was in a
coma due to septicemia, an infection in his blood
stream, that antibiotics, in his case, had not
cured, because he had an abscess in his body
that the antibiotics hadn’t reached. His careproviders believed that the antibiotics would work
if surgery was performed to drain the abscess.
The patient’s wife said he would not have
wanted surgery, but his parents said that he
would have wanted it. It appeared that a mediation approach would allow additional outcomes
to be considered. Standard ethical analysis
would, presumably, prioritize respect for the
patient’s autonomy, and next prioritize his wife’s
substituted judgement. This process literally
followed state law for that location. Using this
ethical analysis, the CEC for the consult believed
that the work that would remain to be done after the patient died would be for the patient’s
parents to forgive his wife.
Using a mediation approach, the CEC attempted to find an area of agreement. It was established that the patient and his wife had a
child, who would suffer if his mother and grandparents were at odds. It was reasoned that, if the
patient could be asked, he would want his wife
and parents to remain close, for the child’s sake.
Given this reasoning, the wife agreed to surgery,
with a do-not-resuscitate (DNR) order. Before the
surgery, though, the antibiotics finally worked.
The patient woke up, and indicated that his wife
was right: he would not have wanted surgery.
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He died six months or so later, as expected, but
his wife, parents, and child were not estranged.
The Needed Skills
Those who would pursue mediation approaches may need exceptional skills to do so.9
If they do not have these skills, they may do more
harm than good. For example, if a participant in
a consultation expresses anger, a CEC may respond defensively.10 On seeing this, participants
in the consult may be less likely to freely share
their thoughts and feelings.
Three skills are most important in using a
limited mediation approach. The first is to establish and maintain a nonjudgmental setting,
which allows participants to openly share what
they think. CECs may need to assess beforehand
whether or not they have a bias that could preclude accomplishing this. For example, when a
CEC learns that a consult will involve a patient
who is imminently dying but who has requested
life-extending treatment, the CEC might ask himor herself whether this request seems to be lifeprolonging or death-prolonging.
The second skill is to be able to move participants to look deeper within themselves. Discovering deeper personal values may enable
participants to find an outcome that is acceptable to all. I recall in this regard, for example, a
couple who had come to be much at odds with
and angry at one another. The husband lived at
home with a terminal illness, and he wanted to
die. He had been dying slowly and then suddenly took a severe turn for the worse. His wife
called an ambulance that came and saved him.
Afterwards, he was enraged about this. He came,
though, to realize that there was not only one
way that his wife could love him, but two. There
was his way, but she had called an ambulance
because she loved him.
A third skill is being able to respond optimally when a participant in a consult responds
with anger. Here, as Fiester points out, understanding and acknowledging the source of a participant’s anger may help to quell its intensity
within minutes. Not being judgmental in any
way is, above all, the key.11 In addition to having these skills, we should begin a consult by
informing all of the participants what will happen if, after discussion, they can’t agree. The participants need to know from the start what the
process could be, later, should they not find a
way to agree. Sharing this information may impose added pressure on participants to compromise, knowing that there is a risk that the outcome may be worse if they do not. To tell the
participants this, in advance, respects them to
the greatest degree by increasing their understanding of what may happen next.
Should We Refer a Consult to a Colleague
with Better Psychosocial Skills?
Some of us may have better psychosocial
skills than others, and these superior skills may
make a difference in successfully using mediation approaches. These skills may make a difference in other ethical consultation contexts as
well; for example, when they are needed to pursue a highly delicate topic, or when a careprovider lacks the ability to withstand and overcome overwhelming, stressful emotions. This
section will address such highly delicate topics, and the next section will consider overcoming overwhelming emotions. To seek out a colleague who is more skilled than ourselves takes
humility and courage. Sawyer and colleagues
list humility as a virtue that CECs should come
to possess.
A first example of this, referred to earlier, is
that of the parents who would not tell their older
child that she was dying.12 In such a situation, if
a careprovider could persuade the parents to tell
their child, the child’s outcome might be optimal.13 On the other hand in this case, a lessskilled careprovider might cause the parents to
feel as if they were being judged, and in response
they might seek to remove their dying child from
the hospital, if they could. If this happened, staff
might call for hospital security to block them,
causing additional distress.
A second example of the need for better psychosocial skills is when a careprovider informs
parents that their newborn has died or is dying,
and that they may, over the longer run, fare better if they hold and even bathe the baby, whether deceased or still alive, as soon as they feel
able—if they can.14 No matter how well this is
done, the parents may see it as most insensitive. Careproviders may believe they should attempt to inform parents, but the utmost psychosocial skills are needed to do this successfully.15
Thus, if careproviders feel that a colleague may
have more psychosocial skills than they do, it
may be preferable to bring in the colleague to
carry out this task.
When we attempt to inform such parents, I
suggest that we begin by saying how troubled
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we feel at the prospect of carrying out the task
before us. We can share that we know that, on
one the hand, we must give them this information, but that we realize, on the other hand, how
incredibly insensitive it may seem.
More generally, all careproviders should
seek to anticipate the ambiguous meanings in
what they say, that patients may misperceive,
and, if possible, address and clarify them as early
as possible. Patients can then take in what we
mean to say. This is illustrated in a real case that
I observed. A patient was chronically hospitalized. She needed daily treatment that could only
be given in the hospital. Her loved ones visited
her around the clock. A careprovider thought
that the patient might not know that she could
refuse the treatments she was receiving, and, if
she did refuse them, she would die. So the careprovider told her this.
The very next day she refused all treatments,
and soon after died. She may have “heard” the
careprovider as telling her that he believed she
should stop the treatment. She may have believed this because she knew that those visiting
her were taking time from their own lives to visit
her every day. The hitch was, her loved ones
visited her because they wanted to—she was
clearly that special and beloved. The careprovider could have told her beforehand what he
didn’t mean. He could have made clear that he
told her this only because he wanted to be sure
that she knew that she had this option.
Should We Refer a Consult to Another When
We Feel Emotionally Overwhelmed?
Another instance in which a CEC may best
refer a consult to another is when the case feels
emotionally overwhelming. The worst risk in
these situations may be to patients; that is, we
may not recognize the stress to ourselves, or, if
we do, we may choose to “tough it out.” When
that is the case, we may unconsciously take out
our anger on the patient for causing us pain, and
may do this in spite of our best efforts. We
should, then, continuously monitor our own
stress. If it seems that the stress we feel is too
much for us, we should seek help from a colleague, or refer the consult to a colleague. Our
professional culture may oppose these choices
by the use of shame. When we do ask a colleague
for help, our colleague’s warmth and support
may far exceed what we expect, because our
colleague probably will understand. The relief
that we will most likely feel may be similar to
the relief that patients feel when a careprovider
says she or he will be the patient’s ally.
This stress is documented wonderfully by
Iris Ohel-Shani and Dalit Yassour-Borochowitz
in their article published in this issue of JCE,
“Moral Distress and Feticide: Hearing the Voices
of Maternal-Fetal Medicine Physicians.”16 The
authors discuss the stress felt by physicians who
perform late-term abortions in Israel, where this
is legal. One such physician’s report is illustrative. She states, “I’m sure in the early weeks [the
fetuses] feel pain. It’s terrible to stab them. Or
they are trying to resist, trying to escape, which
is a horrible sight.” She seeks to comfort herself. She says, “Well, maybe I saved a family,”
and, “You try to tell yourself things like that too.”
The physicians interviewed said that they seek,
in their own state of stress, to comfort patients
who are having an abortion. In their article,
Andréa Becker and Lena R. Hann wrote, “you
don’t know what a woman’s level of comfort is.
Is she imagining this as a ball of tissue, or is she
imagining it as a baby? . . . We usually talk about
it like it’s a ball of tissue. We never say baby,
and we try not to say fetus. . . .”17
In the case that Brown reports, Allison’s surgeon tried to console her by saying, “It sounds
like you are worried that you haven’t done everything you could for your child.” Seeking to
reassure her, he told her that she had. This approach may have helped patients in other such
instances, but in this one, Allison knew that her
fetus would die because this surgeon refused to
operate. Careproviders who are especially psychosocially skilled might, in these instances, ask
a question, rather than make a statement. They
might ask a patient like Allison, for example,
“What do you feel you need to do to be a good
parent to your child?”18 I would add a question
to this: “What do you feel you need to do that
you can do?”
Should We Refer Decision Making to
Another Person or Body?
When ethics consults reach a dead end and
reasonable people still reasonably differ, there
may be no way to resolve the impasse. The best
decision may be to a switch the discussion from
what the outcome should be to who should make
the decision, under the circumstances. At
present, this occurs most commonly when a
child is terribly ill and there is no clear reason
94 The Journal of Clinical Ethics Summer 2021
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to keep the child alive or to let the child die.
The decision is then often referred to the child’s
parents.
An example of a lack of agreement is when
evidence of nonpaternity is discovered incidentally, disclosure of the test result will have no
medical gain for anyone,19 and an ethics committee is asked for a recommendation about disclosure. As in other ethically difficult cases, the
members of the ethics committee may remain
divided, and so may decide to vote to reach a
decision.20 This way to make an ethical decision—by taking a vote or by a ruling of the majority—is a prime example of ethically suboptimal decision making. Voting may seem most desirable, because, at least in the United States, it
accords with our beliefs in a democratic process, and that all people should have an equal
say. The drawbacks, however, also are apparent.
The outcome of the vote may depend on who is
present on a given day. Worse, the person or
persons who dissent may be those who have the
most insight on the matter. In the example of
unsought nonpaternity data, the majority may
be rule-bound and respond wholly and reflexively by applying the principle of transparency:
that a hospital should never keep a secret. There
are notable exceptions regarding transparency;
a very controversial example is when a transplant hospital will not explain why a transplant
is stopped at the last minute. (For example, a
family member strongly opposes the donation
at the last minute.)
In the case of disclosing the results of an
unsought nonpaternity test, disclosure may destroy a family’s life together. If a majority of the
ethics committee votes to disclose on the basis
of transparency, perhaps it is likely that they
missed an important aspect of the case. The attraction of a dominant principle such as transparency or of making a decision on the basis of
a simple majority may too easily prevail. The
risk, as the nonpaternity example illustrates,
may occur in cases that are “at the margins.” At
the margins, there may be a greater number of
nuances that should be considered, as Brown
suggests. Such difficult cases may best be referred to another decision-making body, rather
than be subject to a majority vote when no agreement may be possible.
This does not presuppose that the new decision makers will arrive at the best possible
answer. If, though, the new decision-making
process is debated as vigorously as the previous
attempt to find the best outcome, a patient or
family may be able to experience the eventual
decision as acceptable, even should the decision
not be one that the involved parties wanted.
Given this, the parties in a consult should
know from the start that it is possible for a determination be referred to another body. For example, if there had been an alternative means to
resolve Allison’s request for a c-section other
than the surgeon’s own personal moral views,
Allison and Brown might have been able to accept the eventual decision better.21
Should We Ever Contact a Patient
or Family after a Consult?
Individuals most vulnerable to harm are parents whose child has died. Authors Meaghann
S. Weaver and colleagues advise careproviders
to keep in touch with these families,22 and this
would include parents like Allison. I believe that
when careproviders work with parents or patients this intimately, for example as Brown did
with Allison, they should offer to stay in touch
in some way. If they do not, patients or family
members may experience suddenly losing the
relationship as an additional, painful loss. The
lives of parents who have lost a child, Weaver
and colleagues write, have been “irreversibly
changed.”23 Their world has become ‘“unrecognizable to them.”24 Bereaved families, they maintain, may feel displaced from their “medical
home.”25 They have lost their “human connection” to the “caring medical team.”26 They may
have come to regard their child’s careproviders
as their “medical family.”27 Bereavement research, they add, indicates that these families
perceive a greater need for support in the second year following a child’s death than in the
first year, and that their “grief trajectories” continue for many years.28 When careproviders neglect “bereavement outreach,” they conclude, is
to “miss an opportunity to extend their previously developed caring connection.”29
These conclusions are profound. Weaver and
colleagues suggest, first, that careproviders
should fully attend to what they say. They might
say initially, when first meeting the parents after a child’s death, “There are no good words,
but please know how very sorry I am.” Careproviders should not use words that parents may
hear as a cliché. Weaver and colleagues caution,
for instance, against routinely saying anything
like “I know how you feel.” Doing this may re-
Volume 32, Number 2 The Journal of Clinical Ethics 95
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for any commercial purpose without the express written consent of The Journal of Clinical Ethics.
sult in parents feeling still more alone, and suffering to an even greater extent.
The authors suggest that if careproviders
have treated a child for a long time, they should
continue their contact with parents, as long as
the parents want. Later, the authors suggest, it
might be best to share a story, memory, accomplishment, or experience that they had with the
child, or that they remember the parents shared
with them.30 We can apply these principles even
after an ethics consultation. In this regard I think
of a practice urged and carried out by the ethicist John Fletcher.31 He was also a clergyperson.
In his latter role, he would only marry a couple
if they agreed beforehand to forgive all of the
people toward whom they felt a grudge. I note
his practice here to indicate the similarly exceptional commitment he felt to following up
with patients even after they left the hospital.
He invited all patients and their families
with whom he consulted to come back to the
ward a week or two after the consultation to meet
with staff and tell them what, for them, had gone
wrong—if they felt that way. I can still hear
Fletcher’s voice when he would call patients or
family on the phone. “We need you,” he would
say. Patients would come in and share what they
had felt, even when they felt offended. Fletcher
and his staff had, in one case, for example, recommended to a child’s parents that they allow
their child to die. The child had had several cardiac arrests and thus needed constant heart
monitoring, and careproviders needed to be near
enough to the child to resuscitate his heart at all
times. The parents rejected the staff’s recommendation. Subsequently the child’s heart got better, and his heart-stopping arrhythmias became
much less frequent. His parents shared how the
staff’s suggestion had displeased them. Their
sharing may possibly have been instructional for
the staff, and their being able to share this may
have increased their bonding with the staff.
I recommend that we inform patients and
family members at the beginning of a consult
that we would like to contact them afterwards.
We could add why, which would be not only
for the education of the staff, but to build on
and increase positive feelings between patients
and staff, feelings that should be prioritized
throughout the consult. I would go a different
way than Fletcher did. I would tell patients and
family members that what matters the most in
meeting after a consult is what patients and families would prefer to do, not what the staff might
learn. I would say that the conversation could
benefit future patients. I would emphasize to patients and family members that they could
change their mind about meeting, at any time. If
patients and family members agree to meet,
when they arrive I would be sure to sit next to
them, and perhaps closest to them, throughout
any discussions as a way to convey my absolute
emotional support. If they couldn’t come or
wouldn’t come, I would ask if they would be
open to have me come to their home with whatever staff they worked with, that I could successfully round up. I would call this an “ethics
home visit.” Bonding is, I believe, all important.
CONCLUSION
After an ethical conflict, patients and family members may sometimes feel embittered.
This article seeks above all to alter this outcome.
My suggestions include that careproviders offer
to be the ally of patients and family members,
start consults with mediation approaches, and
prioritize bonding, in an attempt to thwart possible embitterment, and to allow patients and
family members to have a high quality of life
going forward. These goals require us to seek
the help of others if we lack sufficient psychosocial skills to use mediation approaches, successfully work through delicate issues, or avoid
causing harm to patients should we experience
overwhelming stress. These actions require exceptional humility and courage. I have discussed
the kind of stress that occurs in physicians who
perform abortions and have commented specifically on the physicians’ efforts, despite their
stress, to seek to relieve these patients.
I end this article with an appeal to careproviders to follow up with patients and family
members after a consult is completed. If we do
not, this may be an additional loss, since, over
time, patients and family members may have
come to regard careproviders more or less as family, as a result of having spent so many intimate
moments together, and these moments may have
been as important and meaningful to patients
and family members as any in their lives. It is
not that they are like family. They are family.
BLINDING OF THE CASES
Details of the cases presented have been altered
to protect the identity of patients, family members,
and careproviders.
96 The Journal of Clinical Ethics Summer 2021
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NOTES
I thank Norman Quist for numerous insights he
gave me on this article.
1. K.J. Feder, S. Chao, C.J. Vercler, A.G. Shuman,
and J. Firn, “A Pre-Doctoral Clinical Ethics Fellowship for Medical Students,” in this issue of JCE 32,
no. 2 (Summer 2021).
2. K.E. Sawyer, N. Dundas, A. Snyder, and D.S.
Diekema, “Competencies and Milestones for Bioethics Trainees: Beyond ASBH’s Healthcare Ethics Certification and Core Competencies,” in this issue of JCE
32, no. 2 (Summer 2021).
3. A. Caruso Brown, “The Last Bastion of Paternalism? A Reflection on Proceduralism, Power, and
Privilege,” in this issue of JCE 32, no. 2 (Summer
2021).
4. See M. Bluebond-Langner, The Private Worlds
of Dying Children (Princeton, N.J.: Princeton University Press, 1978). See also A.L. Katz, S.A. Webb, and
the Committee on Bioethics, “Informed Consent in
Decision-Making in Pediatric Practice,” Pediatrics
138, no. 2 (August 2016): e20161485, doi: 10.1542/
peds.2016-1485, and Committee on Bioethics, “Informed Consent in Decision-Making in Pediatric Practice,” Pediatrics 138, no. 2 (August 2016): e20161484,
doi: 10.1542/peds.2016-1484.
5. See, e.g., D.A. Haycock, Murderous Minds (New
York, N.Y.: Pegasus Books, 2014), especially pages 80-
81, on how, based on brain function, this could occur.
6. G. Niveau and I. Welle, “Forensic Psychiatry,
One Subspecialty with Two Ethics? A Systematic Review,” BMC Medical Ethics 19, no. 2 (10 April 2018):
25, doi: 10.1186/s12910-018-0266-5.
7. A. Fiester, “The Failure of the Consult Model:
Why ‘Mediation’ Should Replace ‘Consultation,’
”American Journal of Bioethics 7, no. 2 (February
2007): 31-2.
8. Ibid.
9. A. Fiester, “What Mediators Can Teach Physicians About Managing Difficult Patients,” American
Journal of Bioethics 128, no. 3 (March 2015): 215-6.
10. Ibid., 215.
11. Ibid.
12. I would like to thank Norman Quist for alerting me to the need for careproviders to have the likely
necessary psychosocial skills if they are to pursue this
endeavor of trying to persuade parents to tell their
children that they are dying.
13. Bluebond-Langner, The Private Worlds of
Dying Children, see note 4 above; Katz, Webb, and
the Committee on Bioethics, “Informed Consent,” see
note 4 above.
14. See D. Wolke, N. Baumann, B. Busch, and P.
Bartmann, “Very Preterm Birth and Parents’ Quality
of Life 27 Years Later,” Pediatrics 140, no. 3 (September 2017): e20171263, doi: 10.1542/peds.2017-1263;
C. Kingdon, E. O’Donnell, J. Givens, and M. Turner,
“The Role of Healthcare Professionals in Encouraging Parents to See and Hold their Stillborn Baby: A
Meta-Synthesis of Qualitative Studies,” PLoS One 10,
no. 7 (2015): e0130059, doi: 10.1371/journal.
pone.0130059; A. Lathrop and L. VandeVusse, “Affirming Motherhood: Validation and Invalidation in
Women’s Perinatal Hospice Narratives,” Birth 38
(2011): 256-65; V. Daugirdaite, O. van den Akker, and
S. Purewal, “Posttraumatic Stress and Posttraumatic
Stress Disorder after Termination of Pregnancy and
Reproductive Loss: A Systematic Review,” Journal of
Pregnancy 2015 (5 February 2015): 646345, doi:
10.1155/2015/646345.
15. I would like to thank Norman Quist for this
insight.
16. I. Ohel-Shani and D.Yassour-Borochowitz,
“Moral Distress and Feticide: Hearing the Voices of
Maternal-Fetal Medicine Physicians,” in this issue of
JCE 32, no. 2 (Summer 2021).
17. A. Becker and R. Hann, “ ‘It Makes It More
Real’: Examining Ambiguous Fetal Meanings in Abortion Care,” Social Science & Medicine 272 (March
2021): 113736, doi: 10.1016/j.socscimed.2021.113736.
18. M.S. Weaver, W.G. Lichtenthal, K. Larson, and
L. Wiener, “How I Approach Expressing Condolences
and Longitudinal Remembering to a Family after the
Death of a Child,” Pediatric Blood & Cancer 66, no. 2
(February 2019): e27489, doi: 10.1002/pbc.27489; E.G.
Howe, “Ethical issues when non-paternity is an incidental finding,” International Journal of Pregnancy
& Child Birth 7, no. 1 (2021): 1-4, DOI: 10.15406/
ipcb.2021.07.00218.
19. M. Prero et al., “Disclosure of Misattributed
Paternity,” Pediatrics 143, no. 6 (June 2019):
e20183899, doi: 10.1542/peds.2018-3899. See also
D.C. Wertz, J.C. Fletcher, and J.J. Mulvihill, “Medical
Geneticists Confront Ethical Dilemmas: Cross-cultural
Comparisons Among 18 Nations,” American Journal
of Human Genetics 46, no. 6 (June 1990): 1200-13; M.
Weaver, “The Double Helix: Applying an Ethic of Care
to the Duty to Warn Genetic Relatives of Genetic Information,” Bioethics 30, no. 3 (March 2016): 181-7.
20. Fiester, “What Mediators Can Teach Physicians,” see note 9 above; see, more generally, R.M.
Sapolsky, Behave (New York, N.Y.: Penguin Books,
2017) for studies on how people may have biases without knowing this.
21. Weaver, Lichtenthal, Larson, and Wiener,
“How I Approach Expressing Condolences,” see note
18 above.
22. Ibid., 1.
23. Ibid.
24. Ibid., 2.
25. Ibid.
26. Ibid.
27. Ibid., 5.
28. Ibid.
29. Ibid.
30. Ibid.
31. John Fletcher played a primary role in bringing JCE about.