154 18 Ethical Issues Around Death and Dying MEREDITH G VAN DER VELDEN AND JEFFREY P BURNS • Although decision making at the end of life most commonly rests with a child’s parents, there may be times[.]
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Ethical Issues Around Death and Dying
MEREDITH G VAN DER VELDEN AND JEFFREY P BURNS
• Although decision-making at the end of life most commonly
rests with a child’s parents, there may be times when a parent
requests therapies that are deemed inappropriate by the
clini-cal team.
• As truly futile treatment is difficult to define, deliberation over
possibly inappropriate therapies should focus on intensive
communication and negotiation, with hospital processes
available for support and deliberation when this fails.
• Rationing decisions should not be made for an individual
pa-tient when evaluating the appropriateness of a treatment at the
PEARLS
end of life Rather, policies on rationing should be made at the institutional level.
• The majority of deaths that occur in the pediatric intensive care unit do so following a decision to withdraw or withhold life-sus-taining treatments.
• There is no legal or moral distinction between withdrawing and withholding treatment.
• The doctrine of double effect supports the use of the titration
of sedatives and analgesics to ensure comfort at the end of life.
Many of the ethical issues that emerge in the care of the critically
ill child do so at the end of life Although many controversies still
exist and new ethical dilemmas continually surface when facing
death in the pediatric intensive care unit (PICU), significant
progress toward a degree of consensus has been made over the
years This chapter provides an overview of ethical concerns that
arise at the end of life in the PICU, including decision-making
near the end of life, the ethics of withdrawal and withholding of
life-sustaining treatments, issues around death determination, and
issues that arise after death has been declared Much of the
discus-sion of the delivery of end-of-life care can be found in the chapter
on palliative care (see Chapter 19)
Decision-Making at the End of Life
There is little debate that decision-making authority for infants
and children, particularly those in the PICU who are unable or
too young to make decisions, rests with the parents.1 In light of
the diversity of individual and family values and the complexity
of the decisions being made, parents are justifiably provided wide
discretion in these healthcare decisions for their children.2
How-ever, there is similar consensus that physicians have an obligation
to protect their patients in a way that may involve challenging the
wishes of the parents on behalf of a child’s “best interests” when
this rare situation arises.3
More than 30 years ago, the President’s Commission for the
Study of Ethical Problems in Medicine and Biomedical Research3
produced the original guiding documents for most of these issues
In addition to addressing the determination of “best interests” when
approaching treatment options, the commission also discussed an approach to decision-making with parents It concluded that al-though decision-making authority should rest with the parents under most circumstances, there may be times when it is appropri-ate for the physician to act against the parents’ wishes, specifically when parents choose to forgo clearly beneficial treatment and when parents prefer to provide futile treatment (Table 18.1)
Although most physicians agree, and ethics and the law sup-port, the opinion that delivering treatment that is “futile” is inap-propriate, the concept of futility has been so controversial that it
is rarely an effective support for a physician in overriding a par-ent’s wishes Regardless, most major societies—including the American Academy of Pediatrics (AAP), Society of Critical Care Medicine (SCCM), and American Medical Association (AMA)—
do support the physician in withholding futile treatments from patients when it can be so determined.1 , 4 , 5 The problem still rests
in determining when care is “futile.”
While much progress has arguably been made in our approach
to cases of “futility” as practitioners in the intensive care unit (ICU), situations continue to arise in which parents wish to ad-minister treatments and support that are deemed inappropriate and nonbeneficial by the providers In these scenarios, how do practitioners balance the interests of the patient, family, society, and themselves? Is determining “futility” in these situations pos-sible or even appropriate?
Burns and Truog addressed the concept of futility and these questions by describing historical and generational accounts
of the notion of futility In doing so, they suggest a practical approach to resolving questions of medical futility.6 The first
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generation describes attempts at defining futility in order to resolve
disputes with family members These have included attempts
to quantitatively (e.g., treatment has been useless in the past
100 cases), qualitatively (e.g., “treatment that merely preserves
permanent unconsciousness”),7 and physiologically (e.g.,
treat-ment unable to achieve its physiologic goal) define the concept
All of these definitional approaches have been largely unsuccessful
in actually resolving questions of disputed therapies between
families and care providers as a result of flaws inherent in the
definitions, along with failure to reach consensus on the
defini-tion in the background of a pluralistic society.8
Following recognition that attempts to define futility failed,
the second generation described the subsequent period, which
attempted to address disputed cases through procedures aimed
at resolution These have taken the form of individual hospital
policies outlining processes to be followed in cases in which the
appropriateness of a therapy was brought into question and
at-tempts at consensus between the family and clinicians failed In
general, these policies aim to represent all parties involved and
most often include an ethics consultation with possible courses of
action if resolution of the dispute is not achieved by mere
involve-ment of this third party The possible actions include further
at-tempts at resolution, transfer of care, or judicial involvement for
the purpose of, or hospital endorsement of, unilateral action on
behalf of the clinical team Ultimately, the policies transfer the
decision-making authority from the bedside clinicians and family
to this third party With these processes, the major concern that
arises focuses on the neutrality of the committee on behalf of the
disputed parties.9 A survey on attitudes and practices of pediatric
critical care providers showed that despite most hospitals having
these policies, providers do not make unilateral decisions to forgo
treatment against the wishes of the family but rather provide the
requested support until consensus is reached.10 While this reports
practice rather than preference, another survey demonstrated that
the majority of pediatric intensivists questioned are not in support
of limiting therapies against the wishes of families,11 giving
fur-ther support to the notion that even with policies in place, acting
against the wishes of the family is not likely
The final generation focuses on enhancement of early
com-munication and negotiation with families when anticipating
and making decisions about the use of life-sustaining
treat-ments In concert, this involves clinicians supporting each other
while they respect the wishes of the family and deliver care with
which they may disagree This final generation, while not the
easiest or most straightforward, may represent the approach that
is most aligned with the underpinnings of dedicated critical
care—to provide support for patients and their families through
illness and death
A final issue relevant to the discussion of decision-making around the use of life-sustaining therapies in a critically ill patient
is the rationing of medical care While it can be tempting to con-sider cost control in these discussions, as it is a pressing concon-sider- consider-ation in healthcare today, it should be separated from the decision
of the appropriateness of a medical treatment for an individual patient The questions of cost and appropriateness, although both important, are fundamentally different, and the approaches to answering them should reflect this Furthermore, ICU care is known to be costly, but the limitation of its use at the end of life
is not certain to result in significant cost savings.12 Rationing
at the bedside can be complicated.13 For this reason, the AAP has supported the separation of rationing decisions and bedside decision-making for any individual patient.14
Requests for Potentially Inappropriate Treatments in the Intensive Care Unit
A joint statement by the American Thoracic Society, American Association for Critical Care Nurses, American College of Chest Physicians, European Society for Intensive Care Medicine, and SCCM recently addressed this issue and endorsed the following recommendations, among others6:
1 Institutions should implement strategies to prevent intractable treatment conflicts, including proactive communication and early involvement of expert consultants
2 The term “potentially inappropriate” should be used, rather than futile, to describe treatments that have at least some chance of accomplishing the effect sought by the patient, but clinicians believe that competing ethical considerations justify not providing them Clinicians should explain and advocate for the treatment plan they believe is appropriate Conflicts regarding potentially inappropriate treatments that remain intractable despite intensive communication and negotiation should be managed by a fair process of conflict resolution; this process should include hospital review, attempts to find a will-ing provider at another institution, and opportunity for exter-nal review of decisions When time pressures make it infeasible
to complete all steps of the conflict resolution process and clinicians have a high degree of certainty that the requested treatment is outside accepted practice, they should seek proce-dural oversight to the extent allowed by the clinical situation and need not provide the requested treatment
3 Use of the term “futile” should be restricted to the rare situa-tions in which surrogates request intervensitua-tions that simply cannot accomplish their intended physiologic goal Clinicians should not provide futile interventions.15
Withholding and Withdrawing
of Life-Sustaining Treatments
While disagreements about the use of life-sustaining treatment do arise on occasion, it is far more common that a family and the medical team reach consensus about a decision to withdraw life-sustaining therapies Furthermore, a majority of deaths in the PICU occur after the withdrawal of life-sustaining therapies.16 , 17
While there may be regional, national, and international variability
in the number and percentage of patients who have a decision made to withdraw life-sustaining therapies,17 the ethics of the process of withdrawing life-sustaining treatments remain the same
Physician’s Assessment
of Treatment Options
Parents Prefer to Accept Treatment
Parents Prefer to Forgo Treatment
Clearly beneficial Provide treatment Provide treatment
(during review process) Ambiguous/uncertain Provide treatment Forgo treatment
Futile Provide treatment Forgo treatment
TABLE
18.1 Decision-Making in the Pediatric Intensive Care Unit
Trang 3At this stage, the difference between withdrawing and
with-holding treatment may come into question Although the actions
of withdrawing and withholding a therapy may feel undeniably
different to families and the care team, there is no true moral or
legal distinction between the two.3 Any treatment not directed at
comfort may be withdrawn or withheld if agreed upon by the
family and clinical team, including, but not limited to,
mechani-cal circulatory or ventilatory support, medications supporting the
circulation, renal replacement therapy, antibiotic therapy, and
hydration and nutrition Although clinicians and families may
make morally and legally defensible decisions to limit such
treat-ments, it is never acceptable to limit care directed at providing
comfort and emotional support for the patient and the patient’s
family.18
Once the decision is made to focus on comfort rather than
life-sustaining therapies, whether these are being withdrawn or
withheld going forward, the aggressiveness of and attention to
care cannot dissipate The doctrine of double effect remains the
guiding principle when considering therapies to be used at the
end of life when the focus has transitioned from sustenance of life
to comfort While a contentious topic, related in part to concerns
of oversimplification and misplaced focus on physician intent, it
remains relevant and supportive when drawing the line between
possibly unacceptable (e.g., euthanasia) and acceptable (e.g.,
aggressive palliative therapy) treatment courses.18
As alluded to, the doctrine relies on a distinction between what
is intended and what is merely foreseen by the clinician It states
that for any action that has two effects, one good and one bad, it
is justifiable if the following four conditions are met (Box 18.1):
(1) the action itself must be morally good or neutral, (2) the good
and not the bad effect must be intended, (3) the good effect must
be a result of the action and not by means of the bad effect, and
(4) the good effect must proportionally outweigh the bad effect.19
As clinicians address a number of therapies considered when
treating pain and suffering at the end of life, this doctrine
sup-ports many, such as the use of analgesia and sedation It falls short
in justifying actions such as the administration of neuromuscular
blockade to a dying patient, as well as other courses of treatment
that might fall under the distinction of active euthanasia
Both the American College of Critical Care Medicine of the
SCCM and the American Thoracic Society provide guidelines on
the delivery of care at the end of life, with specific
recommenda-tions on management of symptoms.18 , 20 Among other topics, the
guidelines provide a framework for consideration of withdrawing,
withholding, or administering therapies In general, whether
de-ciding to continue or stop a therapy (e.g., antibiotics, mechanical
ventilation) or considering the initiation of a new therapy for
symptom management (e.g., analgesia), the decisions should
cen-ter around the patient’s needs and should incorporate ongoing
patient assessment and consideration of established guidelines.18
Administration of Analgesics and Sedatives
in End-of-Life Care
Along with the avoidance of painful interventions, it is well accepted that pharmacologic interventions aimed at pain relief are indicated when withdrawing life-sustaining treatments The goal for a patient who has had life-sustaining treatments with-held or withdrawn is to treat any signs of discomfort or pain Consistent with the doctrine of double effect, the focus of analgesic medications—including opioids, with their known side effect of respiratory depression—should be directed at this per-ceived pain and not to directly causing death This is best accomplished by careful patient assessment and use of objective scales when appropriate and available, as well as attention to the appropriate dosing titrated to effect, based on a patient’s prior exposure to the medications being considered The medication dosing will vary patient to patient; any guidelines or procedures should reflect this anticipated variability To reiterate, the goal of administering these therapies is only to treat patient discomfort and not to hasten the dying process or treat concerns of family members with medication for the patient The latter concern can and should be dealt with in other ways In addition to emotional and psychologic support for family members, anticipatory guid-ance on the process can help avoid the situation in which a family may perceive discomfort and request medications without objec-tive signs from the patient.18
Most sedative agents lack analgesic properties, but their role in symptom management at the end of life is no less relevant In addition to treating symptoms such as anxiety and agitation, they may also have a role in the treatment of refractory pain and suf-fering not relieved by analgesic medications This latter indication works by lowering patient consciousness until symptoms are re-lieved Sedation used in this manner has been labeled with terms
such as palliative sedation, total sedation, and terminal sedation, the
last of which has received much criticism.21 While critics of the practice claim a slide toward active euthanasia, the dominant view
is that when intended and titrated to relieve symptoms, not to achieve unconsciousness or death, this does not represent eutha-nasia and is a key component in the delivery of quality end-of-life care.22 As with titration of analgesics, the doctrine of double effect remains the principle that makes intent the central issue and de-fends the process In a survey of US physicians, there exists broad support for the acceptance of unconsciousness as a side effect of sedation to treat suffering and refractory pain.23 In its statement
on palliative care in children, the AAP endorses the use of ade-quate analgesia and sedation to treat pain and other symptoms in patients with terminal conditions while explicitly not supporting the practice of physician-assisted suicide or euthanasia.24
Is There a Role for Neuromuscular Blockade
in End-of-Life Care?
Neuromuscular blocking agents have no analgesic or sedative properties Furthermore, while the pharmacologic activity of these agents may give the appearance to others (i.e., family mem-bers) that a patient is without distress, in doing so they actually mask many of the objective signs of suffering that we use when titrating medications for such symptoms Thus, there is no role for the initiation of neuromuscular blockade at the end of life.18 , 25
The more challenging question arises when determining what to
do with existing neuromuscular blocking agents when the team
• BOX 18.1 Four Conditions of the Doctrine
of Double Effect
1 The action itself must be good or at least morally neutral.
2 The good effect and not the bad effect must be intended.
3 The good effect must be a result of the action itself and not by means of
the bad effect.
4 The good effect must proportionally outweigh the bad effect.
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and family have come to the decision to withdraw mechanical
ventilation With the principal goal being to adequately treat a
patient’s discomfort at the end of life when life-sustaining
treat-ments have been withdrawn, attempts should be made to restore
neuromuscular function, including delay in withdrawal when
reasonable, in order to regain access to many of the signs and
symptoms used to titrate medications for pain and discomfort
However, there may be times when the restoration of function
cannot be accomplished in a reasonable time period owing to
fac-tors such as altered drug metabolism and clearance resulting from
organ dysfunction and length of treatment with such agents In
such cases, the benefit of delaying withdrawal of mechanical
ven-tilation may be outweighed by the burden on the family that
comes with this delay In these rare cases, withdrawing mechanical
ventilation without restoration of neuromuscular function is
jus-tifiable but must be balanced with extra attention to ensuring
patient comfort in the absence of typical signs and symptoms of
pain or anxiety.25 This is reflected in the SCCM recommendations
for end-of-life care in the ICU.18
Artificial Hydration and Nutrition
Any treatment that is not directed at comfort may be withdrawn
or withheld at the end of life if the family so chooses and the care
team is in agreement This is no less true for the administration of
artificial hydration and nutrition Although withholding or
with-drawing these therapies may be more psychologically distressing
for caregivers and family, it is important to be clear that ethics and
the law do not distinguish between these and other life-sustaining treatments Guidelines of the AAP and SCCM18 , 26 , 27 provide sup-port for such decisions based on the same considerations of ben-efit and burden as with the withdrawal and withholding of other life-sustaining therapies.1 In recognition of the unique distress that withdrawing or withholding this therapy may present, the AAP strongly recommends the involvement of ethics committees when these decisions are being made.27
Key References
Bosslet GT, Pope TM, Rubenfeld GD, et al An official ATS/AACN/ ACCP/ESICM/SCCM policy statement: responding to requests for
potentially inappropriate treatments in intensive care units Am J
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Burns JP, Truog RD Futility: a concept in evolution Chest
2007;132:1987-1993.
Morparia K, Dickerman M, Hoehn KS Futility: unilateral decision
mak-ing is not the default for pediatric intensivists Pediatr Crit Care Med
2012;13:e311-e315.
Papavasiliou ES, Brearley SG, Seymour JE, et al From sedation to con-tinuous sedation until death: how has the conceptual basis of sedation
in end-of-life care changed over time? J Pain Symptom Manage 2013;
46:691-706.
Weise KL, Okun AL, Carter BS, et al Guidance on forgoing life-sustaining
medical treatment Pediatrics 2017;140(3):e20171905.
The full reference list for this chapter is available at ExpertConsult.com
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