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…

• 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

Decision-Making differences between adult patients and 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

What’s Unique about 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

Who makes decisions for children?

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 decision-making– 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…”

www.claudiampublications.com

“While she confronted the

mirror, her reflection

confronted the world”

Prognosis

Goals of care

Treatment Options

Individualized Care Planning

How We Approach Decision-Making

Decision Making Paradigm

Prognosis

GoalsUncertainty Decisions

Hope

vs.Offering a Choice Making a Recommendation

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-we-

can-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 whenthe 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

Diagnosis Relapse End-of-Life BereavementCrises

Oncology Service

• Advance Care Planning • Symptom Control• Emotional, Social, Spiritual Care• Care coordination • Care Continuity

• 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

Disease evaluation

Palliative care concepts proactively integrated throughout the illness trajectory

• Risk assessment• Care Planning• Routine F/U

• Advanced Care Planning • Emotional, Social, Spiritual Care• Care coordination

USE A “WHAT IF” CONVERSATIONS WHENEVER PATIENTS AND FAMILIES WANT TO DISCUSS ACP ISSUES!

Questions, comments or considerations?

Liza.johnson@stjude.org

Thank You

Resources

http://www2.aap.org/sections/bioethics/default.cfm

http://www.seattlechildrens.org/research/initiatives/bioethics/events/pediatric-bioethics-conference/archives/

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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 Pain Symptom Manage. 2013 May;45(5):832-40.

• Feudtner C and Morrison W. The Darkening Veil of “Do Everyhing”. Archives of Pediatric and Adol Med. 2012 August. 166(8).