Withdrawal of mechanical ventilation in pediatric and neonatal intensive care units.

Abstract

Withdrawing life-sustaining technologies requires all of the resources and concepts that the field of palliative care has to offer. By learning some fundamental principles of medical management at the time of withdrawal and by mastering a few communication techniques, pediatricians, neonatologists, and pediatric intensivists can dramatically improve the care provided to their patients at the end of life. Although we may argue in pediatrics if there is ever such a thing as a good death, we should all strive to ensure one that is free of suffering, and one that supports the family in moving down a path of healthy grief and recovery.

Full text

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Withdrawal of Mechanical Ventilation
in Pediatric and Neonatal Intensive
Care Units
David Munson, MDa,b,*
aDivision of Neonatology, The Children’s Hospital of Philadelphia,
University of Pennsylvania School of Medicine, 34th Street & Civic Center Boulevard,
Room 2442, Philadelphia, PA 19104, USA
bThe Pediatric Advanced Care Team, The Children’s Hospital of Philadelphia, 9th Floor,
Philadelphia, PA 19104, USA
In pediatrics we are gifted with good outcomes. We enjoy high survival
rates in our intensive care units and oncology programs thanks to the resil-
ient nature of children and the advances in pediatric science. Unfortunately
our medical interventions are not always successful. Pediatric patients may
become too sick to respond to our ministrations, may suffer from an incur-
able disorder, or may be faced with a future of severe suffering or terrible
quality of life. Although it is difficult for pediatricians to face the limits of
medical technology, we are obligated to provide exceptional care at these
limits. Thorough and compassionate care at the end of life includes learning
how to discontinue life-sustaining treatments when they no longer provide
a means to a good outcome.
A body of literature in medical ethics has established that there is no eth-
ical difference between discontinuing an intervention (withdrawal) and not
starting one (withholding). Further, it is well established legally that a med-
ical team and the family can discontinue overly burdensome treatment [1–3].
Palliative care principles have made inroads into intensive care units, and
some surveys of practice and physician attitudes toward withdrawing life-
sustaining treatment have been published [4,5]. Although there is little em-
piric research into the most effective way to withdraw ventilator support,
there is now a body of literature that describes application of basic
* Division of Neonatology, The Children’s Hospital of Philadelphia, University of
Pennsylvania School of Medicine, 34th Street & Civic Center Boulevard, Room 2442,
Philadelphia, PA 19104.
E-mail address: munson@email.chop.edu
0031-3955/07/$ - see front matter ? 2007 Elsevier Inc. All rights reserved.
doi:10.1016/j.pcl.2007.08.001pediatric.theclinics.com
Pediatr Clin N Am 54 (2007) 773–785

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principles and theory to guide compassionate end-of-life care in an intensive
care setting [6,7]. This article is aimed at providing a practical approach to
the withdrawal of life-sustaining treatment, and more specifically mechani-
cal ventilation. Although every situation is unique, some general principles
can guide a medical team through a process that seeks to help a family in
their grief and achieve a more comfortable and peaceful death for the pedi-
atric or neonatal patient.
Case
Ithadbeen along 6months.Bornat24 weeks andlessthan 500g,the odds
had always been stacked against Jonathan. He had survived surgery for nec-
rotizing enterocolitis, laser therapy for retinopathy of prematurity, and sev-
eral severe exacerbations of his bronchopulmonary dysplasia. Jonathan’s
parents had always been aware of the high risk for death and struggled
throughouthislife withthebalance ofshort-termsuffering andthepossibility
of a good quality of life later on. At 5 months of age, he had significant bron-
chopulmonary dysplasia and associated pulmonary hypertension. Despite
this, he was maintained onstable, ifhigh,ventilator support and was growing
well on nasoduodenal feeds. After extensive discussions about the possibility
of significant developmental problems and the complications associated with
long-term ventilation, the family and medical team decided to proceed with
a tracheostomy and surgical placement of a feeding tube.
The day before the planned surgery, Jonathan became sick again. He
needed to go back on high-frequency ventilation, 100% oxygen, and inhaled
nitric oxide. Even with all of these therapies, his oxygen saturations were dif-
ficult to keep above 90%. After several days of attempting to discover treat-
able causes for the decompensation, the medical team sat down with the
family again to discuss the gravity of the situation and explore the most lov-
ing choices for Jonathan. Review of a recent MRI demonstrated significant
periventricular leukomalacia. The team reviewed the likely future. The most
likely outcome was that he would not survive this current event or the
planned surgical interventions. If he did survive, he was likely to have pro-
found developmental problems. After several days of deep soul searching
and no improvement in Jonathan’s clinical condition, the family and the
medical team agreed that withdrawal of mechanical ventilation was the
best course of action. He had become difficult to sedate over the prior
2 weeks, requiring high-dose infusions of morphine and midazolam and es-
calating doses of methadone. Consequently several challenges faced the
team in planning for withdrawal of the ventilator.
A communication toolbox
Family experience and satisfaction with hospitalization depends on the
quality of family–staff communication, relationships, and the extent to
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which families and staff members are engaged in partnership. If bad news is
communicated poorly, it can result in confusion, long-lasting distress, and
resentment. If done well, it can promote understanding, acceptance, and ad-
justment. Families remember the words and manner of clinicians long after
they have forgotten the medications, procedures, and details of treatment
[8]. Nowhere is this more critical than in conversations around the with-
drawal of life-sustaining therapy.
McDonagh and colleagues [9] published a study evaluating communica-
tion with families in the context of a family meeting. An increased propor-
tion of time during which the family spoke and the physician listened was
related to increased satisfaction, improved impressions of the physician,
less conflict, and a greater sense that the family’s needs were being met. Cli-
nicians need to remember to keep the message they are delivering concise.
They need to allow silence and time for parents to process the information
and they need to elicit the parents’ thoughts and values.
For critically ill patients, efforts should be made from early in the admis-
sion to explore the family’s hopes, fears, values, and goals. Clinicians can
have these conversations in the context of hoping for the best while prepar-
ing for the worst. Invite multiple perspectives and promote dialog early in
the admission. Creating a relationship and a true understanding of how
the family views their child’s illness facilitates conversations about difficult
choices should the need arise.
Although learning to engage in conversations with families around this
difficult issue is best achieved through experience, it is helpful to prepare
by having mental resources on which to draw. By developing a group of
phrases and ideas with which the clinician feels comfortable, he or she can
more comfortably focus on direct communication. These phrases and ideas
can be conceptualized as a ‘‘communication toolbox’’ (Box 1).
Convey empathy
Parents consistently report that they appreciate compassion, tenderness,
and emotional availability from the physician who is conveying bad news
[10]. Consequently, the clinician should demonstrate her concern for the pa-
tient and family through words and body language. When a family is hurting,
itisanormalhumanresponsetowanttotellthem‘‘itwillallbeOK.’’Infact,it
istheemotionalconnectionthatdrivesthisdesirethattheclinicianshouldhar-
nesstoconveyempathy.Wearesincerelysorryforthepainthefamily isexpe-
riencing, but it is not exactly an apology that we are wishing to communicate.
The key here is sincerity. It is perfectly acceptable to say, ‘‘I am so sorry that
things have become so bad,’’ but it is easy to get into a trap of saying ‘‘I am
sorry’’ over and over again. A useful substitute is the phrase ‘‘I wish.’’ By de-
claring that you wish things were different, you make it clear that you are
aligned with the family and that you care. By saying ‘‘I wish the EEG had
shown some improvement,but I am afraid there is nochange,’’ youhave con-
veyed empathy while giving accurate information [11].
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Speak directly
When discussing withdrawal of life-sustaining therapies, talk about death
and dying without using euphemisms [10,12]. Ask the parents what they fear
the most. Asking about seemingly forbidden topics can relieve a family of
secret anxiety. Do not fear addressing a family’s anxiety directly. ‘‘Many
parents feel like they are leading to the death of their child by agreeing to
stop the ventilator; are you struggling with this?’’ [6] Affirming that such
concerns are common can help. It also may provide an opportunity to
address the goals that lead to the decision. It is the disease or injury that
has put the patient into the situation, not anyone’s decision.
Focus on compassion
Frame the conversation in a way that respects the parents’ love for their
child. When discussing goals of therapy at the end of life, the real question is
how best to love the patient. A decision to withdraw life-sustaining technol-
ogy can be an extraordinary act of love and courage. Compliment the par-
ent’s devotion to their child. Speaking about loving decisions keeps the
conversation within the mental framework of parenting. It gives the parents
permission to talk about end-of-life issues without feeling like they are aban-
doning their core identity as the patient’s mother or father.
Box 1. A communication toolbox
Convey empathy. Use ‘‘I wish things were different’’ instead of
‘‘I am sorry.’’ Be open to a real connection with the family.
Speak directly. Do not use euphemisms. Ask about a family’s
hopes and fears.
Focus on compassion. The fundamental question is how best
to love this patient.
Wait quietly. Use the power of silence to convey empathy,
reinforce your presence, and to allow time for processing.
Review the goals. Sometimes the two goals of medicine come
into conflictdadding time versus adding quality. Be clear
which medical interventions are consistent with stated goals.
Guide parents through the process. Explore with them how they
might participate in the care of their child. What will help them
create meaning and memories?
Address spirituality. Most families rely on spirituality for coping
to some degree. Offer to assist in providing resources and
support spiritual practices.
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Wait quietly
In addition to using words to convey empathy, remember the power of
silence. When a family is processing newly acquired bad news, simply sitting
with them makes it clear that you are there to support them. The clinician
should wait for body language in the family members that they are ready
to receive more information before continuing the meeting. Until they are
ready, the family members will not hear the next piece of information.
The most important questions often arise after a long period of silence
[13]. In addition, your presence relieves a family of the fear of abandonment,
and also sends the message that you are committed to giving the family as
much time as they need.
Review the goals
Tell parents about the two goals of medicine. The first is to add time to
life. The second is to add quality to life. Usually we can pursue both goals
without conflict, but sometimes the burdens of technology become so great
and the chance of recovery so small that the goal of simply adding time
comes into conflict with improving quality or minimizing suffering. Ensure
that families understand the rationale for initiating certain therapies. It
should be clear that the medical team will not initiate therapies that will
cause suffering without the hope of improving the condition [14,15].
Guide parents through the process
The time around removing ventilator support is profoundly personal
and intimate. Every family has a different path toward grieving. Clini-
cians need to explore with the family the options they have to participate
in the care of their child or baby and the opportunities for creating mem-
ories. In the neonatal intensive care unit (NICU), the severity of illness
may have prevented the parents from ever having the opportunity to
hold their baby. They may wish to hold him while he is still on the ven-
tilator to have adequate time for this experience before the baby dies.
For older patients, the parents may desire to climb into the bed for
some final time of holding their child. A family may wish to give their
infant a bath and dress him or her in baby clothes for the first time.
In general, any opportunity to facilitate the parents being just that – par-
entsdwithout having to focus on the monitors, tubes, and machines in-
terfering should be made available [14,16]. Help families understand
what options they have to participate in the care of their child.
Families need to be prepared for what they will see and hear. They need
to know about color changes, gasping breaths, and the unpredictability of
the time to death from the time of withdrawal of support. As discussed later,
the medical team needs to be clear about what symptoms are anticipated
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