Walking the Line:
Ethical Decision Making With
Families at the Fringes
Justin Baker MD, FAAP, FAAHPM
St. Jude Children’s
Research Hospital
Memphis, TN
Objectives
• Review Ethical Decision Making in Pediatrics
• Overview of Shared Decision-making
• Case Study: Evaluating decision making with
uncertain prognosis
• Case Study: Futility and Demands for
Inappropriate Treatment Near the End-of-Life
• Wrap Up and Questions
Why are we here…
Decision-Making differences between
adult patients and children?
• In adults, focus is on the respect for autonomy and capacity
for decision making
– Right to make “poor” choices
– Conflicts involve discrepancies between beneficence and respect
for autonomy.
• In pediatrics, conflicts are more likely to be between parental
decision making authority and beneficence
– Clinicians have fiduciary responsibility to their patient, the child
– Balance parental autonomy versus protection of the child’s best
interests
• Prince vs. Massachusetts: Parents are free to make martyr’s of
themselves, but do not have the right to make martyr's of their children
What’s Unique about Children?
• Generally lack capacity to make their own decisions
– Child’s reasoning abilities, preferences, values, goals often not
developed
– Developing bodies, especially brains
• Rule of 7s
• We assume that parents are the primary decision makers
– A right AND a responsibility of parents
– Children are dependent on family & other support networks for
their care
• Interventions (or lack thereof ) can have lifelong impact
Who makes decisions for children?
• Presumption: parental role is to make decisions
about children’s medical care
– Parents care about child’s well being, know their child,
invested in good outcomes for their child
– Parents have the ability to make decisions themselves
(decision making capacity)
• Impacted by: grief, shock, unclear medical facts, lack of
medical literacy
• Bear the burden of their choices
• Decision-Making Standards:
– Substituted Judgment, Best Interest Standard,
Reasonable Person Standard
Are Parents Always Right?
Parental decision making sometimes
conflicts with:
– What physicians/other medical professionals
think is best for the child
– What the child wants, especially in
adolescents
Legal limitations on parental decisionmaking
– Parental decisions are potentially dangerous
to child’s health, serious risk of serious harm
• Vaccination, Surgery for Appendicitis, Blood
Transfusion
Limits on Parental Decision Making
• Parental Autonomy
– Best Interest of the child
– Limits for Disqualified Parents, Especially Vulnerable Child,
Medically Unacceptable Choices
• Constrained Parental Autonomy
– Best interest of the family unit
– Limited by neglectful or abusive decisions
• Harm Principle
– Limits on decisions which would “significantly increase the
likelihood of serious harm as compared to other options”
“Physician , know thyself…”
“While she
confronted the
mirror, her
reflection
confronted the
world”
www.claudiampublications.com
How We Approach DecisionMaking
Prognosis
Goals of care
Treatment Options
Individualized Care Planning
Decision Making Paradigm
Making a
Offering a Choice vs.
Recommendation
Prognosis
Uncertainty
Hope
Goals
Decisions
Shared Medical Decision Making
• Mutual Respect
– Balancing Autonomy and Paternalism
• Relay Information and Present
Options
– Disclosure, understanding, and
informed choice
• Clinician and Family Arrive at
a Mutually Agreeable Decision
– Families tend to prefer a
shared model
Four box method
Medical
Indications
Patient and Family’s
Preferences
Quality of Life
Contextual
Features
Jonsen AR, Siegler M, Winslade WJ. Clinical Ethics, 6th ed., 2006
Onward, to the Cases
Available on the Internet…
Relapsed RMS
• 3 y/o with localized recurrence of aRMS
– Previously treated with surgery and 42 weeks of
chemo on COG protocol.
– Microscopic disease when recurrence was
resected, negative retroperitoneal lymph nodes
– 2 cycles of chemotherapy for relapsed disease
• Constipation course 1, Diarrhea course 2
– Parents decline further chemotherapy or radiation
saying too impactful on QoL
Medical Indications
Relapsed Alveolar Rhabdomyosarcoma
• Historically ~10% 5 year EFS
• Recent research shows that patients with a
localized relapse have an EFS of 54% +/- 20%
• Team believes there is a good chance for cure
& therapy should not be discontinued
– Feel that chemo/xrt not unduly toxic
Family Preference
• Family feels that chemo/radiation is very toxic
• Feels there is no solid evidence that chemo/
radiation will cure the child
– Believes actual chance of cure closer to 30%
• Believes diet modification, natural immune
boosters, and homeopathic treatments can cure
him
• Believes in prayer & that God doesn’t need
chemotherapy to heal the child
• Skeptical of research based medicine & institutions
Quality of Life
• Family wants to maximize QoL for time he has left
if he is terminal
• Family feels that chemo/XRT worsens his QoL
– With last course had N/V and weight loss
– Slept about 20 hours a day
• Family views chemo/XRT as only exposing him to
suffering and stealing whatever quality he has left
• Medical team also prioritizes QoL
– Feels symptoms could be well managed & therapy
offered reasonable chance of cure
Contextual Features
• Team feels mother is making unreasonable
choice
• Family feels they are choosing in his best
interest
– Family’s Religious and Health Beliefs guiding views
on medicine
• Medical data with large degree of uncertainty
– Wide range listed on EFS
• Would not meet criteria for medical neglect
Uncertain Prognosis: Alternative
Perspectives
• Reiterate team commitment to
provide high-quality care to child
& support to family.
• Continue to offer cure directed
therapy without badgering family
• Palliative Care Consultation
Case Result
• Recurred 1 year after cessation of those 2 cycles of chemo for
relapsed disease.
– Continued to decline chemo & now requested removal of central line.
– Did not keep follow-up appointments for a second opinion.
– Lost to follow-up by the hospital, including the QOL service who was
trying to assist with decision-making.
• Approximately 6 months later, returned to medical attention with
gross recurrence and symptoms of pain from tumor progression.
– Decline palliative directed chemo or radiation
– Continued use of homeopathic agents
• QoL began following in home hospice capacity to manage symptoms
as child approached the end of life.
Remember, the ethical thing to do is not always the
easy thing to do
Demands for Inappropriate
Medical Therapy
Potentially Inappropriate –
Common Definitions
• Medical Intervention that will not
improve or benefit the patient in
any way.
or
• Efforts to achieve a result that is
possible, but that reasoning or
experience suggest is highly
improbable.
Requests for potentially inappropriate
Medical Treatment
Clinicians are not
obligated to preserve
life without limits /
conditions until death
occurs
Inappropriate Requests:
Review Hospital Policy
• Inform patient/decision-maker of your intent to
decline to comply with the request.
•
Consider transfer to another institutional physician
comfortable with complying.
•
•
•
Be mindful of distress that other clinical staff may feel with
perception of continued “futile” care.
If none available, make reasonable effort to assist in
transfer to another facility
Care for patient until transfer can be effected
• If transfer not possible, not obligated to comply
with medically inappropriate, harmful, or
otherwise not in the patient’s best interest.
•
Unilateral DNaR
Strategies in Conflict
•
•
•
•
Continuity and Consistency
Give it Time
Clear up Confusion
Framing- Is there really a
choice?
• Utilize Resources
– Other providers
– Other family members
– Legal
– Ethics
• Avoid drawing lines in the sand
Reflecting on Difficult Cases
• Perception
• Miscommunication
Remember Staff Care
“At times, I have acted against my conscience in providing
treatment to children in my care”
Solomon MZ, Sellers DE, Heller KS, et al: New and lingering controversies in pediatric end-of-life care. Pediatrics 2005
Relapsed Wilms Tumor
• 6 y/o AAF previously treated for Wilms Tumor,
additional chemo was ineffective & tumor
progressed
• Condition deteriorated and child sent back home
on hospice
• Mother returned requesting treatment but child
felt to be actively & irreversibly dying
• Family requested more chemo and “everything
possible” - including CPR - be done for their child
Responding to Requests that
“Everything” Be Done
• The Darkening Veil of “Do Everything”
– “We are going to do everything…” - vague
– “Do you want us to do everything?” – vacuous
– Moratorium on “do everything” being uttered
• Likely a cry – DON’T ABANDON US
• Assume family has good reason for request (avoid labeling as
irrational)
• Request may be a way to cope with conflicting information about
prognosis
– Opting for most optimistic expression of prognosis is reasonable (not
irrational!)
Responding to Requests that
“Everything” Be Done
• Explore the meaning of the “do everything” request –
this is a starting point…
“I respect how deeply committed you are, and we are
also absolutely committed to figuring out what the best
thing to do is. Let’s talk for a few minutes about what the
different options might look like.”
“We always ask ourselves what we can do to help the
patient. To answer this question, we have to be clear
about what we are hoping for—recovery, comfort,
dignity—and do all that we can that has a reasonable
chance of getting us there.”
Reassure family that the team is
fully committed to providing
excellent care
• “There is nothing more we can do…” – full stop
• Commit to doing “the-best-something-that-wecan-do”
“I wish there was more that we could do that would halt the
progress of this disease, but none of the treatments we have
are able to do this. We are still devoted to taking care of your
child and will do everything in our power to keep pain and
discomfort away.”
Doing everything includes recognizing when
the limits of medicine have been reached.
Helpful Hints
•
•
•
•
•
•
•
COMMUNICATION, COMMUNICATION, COMMUNICATION
Breathe and “take a moment”
Try to avoid drawing a line in the sand
Time trials are your friends
Bring in multidisciplinary team and consultants
Consult Ethics Committee and/or Palliative Care Team early
Language matters
– “Withdrawal of care” – NOOOOOOO
– “Do you want us to put a tube in your child to help them breath
(even though I know this won’t be helpful)” – NOOOOOO
• Relationship-based care  be willing to make
recommendations
– “What would you do if this was your child?” – feel free to answer
Helpful Hints
• Beware of SEAGULLS
And Remember …..
Anticipatory guidance and the
“what if” conversation
Oncology Service
Palliative care concepts proactively
integrated throughout the illness trajectory
Diagnosis
Disease evaluation
Crises
• Advance Care Planning
• Education about Palliative Care
• Routine distress assessment
• Advance Care Planning
• Symptom Control
• Emotional, Social, Spiritual Care
• Care coordination
• Advanced Care Planning
• Education about Palliative Care
• Routine distress assessment
Relapse
End-of-Life
Bereavement
• Advance Care Planning
• Symptom Control
• Emotional, Social, Spiritual Care
• Care coordination
• Care Continuity
• Advanced Care Planning
• Emotional, Social, Spiritual Care
• Care coordination
• Risk assessment
• Care Planning
• Routine F/U
USE A “WHAT IF” CONVERSATIONS WHENEVER PATIENTS AND FAMILIES WANT TO DISCUSS ACP ISSUES!
Questions, comments or
considerations?
Thank You
[email protected]
Resources
http://www2.aap.org/sections/bioethics/default.cfm
http://www.seattlechildrens.org/research/initiatives/bioethics/events/p
ediatric-bioethics-conference/archives/
References
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Ross LF. Children, families, and health care decision-making. Oxford, UK:
Clarendon Press; 1998.
Diekema DS. Parental refusals of medical treatment: The harm principle as
threshold for state intervention. Theor Med Bioeth 2004:25(4):243-264.
Elwyn G, Laitner S, Coulter A, et al. Implementing shared decision making in the
NHS. BMJ 2010:341:c5146.
Ruppe MD, Feudtner C, Hexem KR, Morrison WE. Family Factors Affect Clinician
Attitudes in Pediatric End-of-Life Decision Making: A Randomized Vignette Study. J
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Feudtner C and Morrison W. The Darkening Veil of “Do Everyhing”. Archives of
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