Walking the Line: Ethical Decision Making With Families at the Fringes

1. Walking the Line:Ethical Decision Making With Families at the Fringes Justin Baker MD, FAAP, FAAHPM St. Jude Children’s Research Hospital Memphis, TN

2. 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

3. Why are we here…

4. 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

5. 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

6. 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

7. 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

8. 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”

9. “Physician , know thyself…” “While she confronted the mirror, her reflection confronted the world” www.claudiampublications.com

10. How We Approach Decision-Making Prognosis Goals of care Treatment Options Individualized Care Planning

11. Decision Making Paradigm Offering a Choice Making a Recommendation vs. Prognosis Uncertainty Goals Decisions Hope

12. 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

13. 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

14. Onward, to the Cases

15. Available on the Internet…

16. 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

17. 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/xrtnot unduly toxic

18. 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

19. 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

20. 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

21. 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

22. Case Result • Recurred 1 year after cessation ofthose 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

23. Demands for Inappropriate Medical Therapy

24. 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.

25. Requests for potentially inappropriate Medical Treatment Clinicians are notobligated to preserve life without limits / conditions until death occurs

26. 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

27. 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

28. Miscommunication Reflecting on Difficult Cases • Perception

29. 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

30. 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

31. 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!)

32. 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.”

33. Reassure family that the team is fully committed to providing excellentcare • “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 when the limits of medicine have been reached.

34. 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

35. Helpful Hints • Beware of SEAGULLS And Remember …..

36. Anticipatory guidance and the “what if” conversation Oncology Service Palliative care concepts proactively integrated throughout the illness trajectory Diagnosis Disease evaluation Crises Relapse End-of-Life Bereavement • Advance Care Planning • Education about Palliative Care • Routine distress assessment • Advance Care Planning • Symptom Control • Emotional, Social, Spiritual Care • Care coordination • Care Continuity • Advance Care Planning • Symptom Control • Emotional, Social, Spiritual Care • Care coordination • Risk assessment • Care Planning • Routine F/U • Advanced Care Planning • Emotional, Social, Spiritual Care • Care coordination • Advanced Care Planning • Education about Palliative Care • Routine distress assessment USE A “WHAT IF” CONVERSATIONS WHENEVER PATIENTS AND FAMILIES WANT TO DISCUSS ACP ISSUES!

37. Questions, comments or considerations? Thank You Liza.johnson@stjude.org

38. Resources http://www2.aap.org/sections/bioethics/default.cfm http://www.seattlechildrens.org/research/initiatives/bioethics/events/pediatric-bioethics-conference/archives/

39. References • Levine D, Cohen K, Wendler D. Shared medical decision-making: considering what options to present based on an ethical analysis of the treatment of brain tumors in very young children. Pediatr Blood Cancer. 2012 Aug;59(2):216-20. • Buchanan A, Brock D. Deciding for others: The ethics of surrogate decision-making. Cambridge, UK: Cambridge University Press; 1990. • 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).