The Adolescent with Cancer

1. The Adolescent with Cancer Psychological & Ethical Issues Andrew McLeod Royal Marsden Hospital Conflicts of interest none Images kindly provided by Teenage Cancer Trust, and Royal Marsden Teenage Cancer Unit Prior consent for public display given

2. Cancer in Adolescence • Leading cause of non-accidental death • 2,200 new cases in UK per year (TCT statistic) • Gap between adult and paediatric services • Bad time to receive a cancer diagnosis

3. Adolescence • Transition to adulthood • Rapid bodily changes • Important brain growth and development • Emergence of…. • Identity, personality and orientation • Intellect, emotional maturity and values • Autonomy and place in society

5. Things Can be Difficult • Peer group approval and image are vital • Invincible but acutely self-conscious • Independent but without resources • Misunderstood and patronised

8. Adolescence 2013 • www & social media • Hand held devices • Ready availability of drugs and alcohol • Early milestones • Pressure to succeed • Less supervision

9. Psychological Problems • Eating disorders (4 - 8%) • Substance abuse and risk taking • Depression and self harm (5-15%)

10. Cancer in Adolescence • Mixed tumour types – adult & paediatric • Reduced survival prospects • Aggressive tumour behaviour • Later presentation / lower adherence • Adolescent transition process disrupted Barr RD. Cancer Treat Rev 2007; 33: 597-602

11. Normal Life Suspended • Isolation from school and social life • Unable to participate in sport and recreation • Threats to school achievements or career • Loss of confidence with peers • Hair loss, implanted lines and bodily changes • Personal relationships suffer

12. Reliance on Others • Independence challenged by need for • Help in decision making • Emotional and psychological support • Practical assistance, e.g. transport • Greater reliance on family for support • Disruption of social development • Threat to long term family relations

13. Too Much to Cope With? • Issues beyond a teenager’s maturity • Frightening diagnosis • Important treatment decisions • Prospect of death or shortened life

14. Low Self Esteem • Discovering who you are • Liking and valuing who you are • Preserving self worth during cancer Evan. Cancer 2006; 107: 1672-1679

15. Disengagement • Questioning all forms of authority • Withdrawal and non-communication • Non-cooperation or refusal

16. Depression & Anxiety • More intense than matched controls • Significant symptoms will require treatment • Preoperative anxiety common but unreported AbramsCancer Treat Rev 2007; 33: 622-630

17. Specific Challenges of Cancer • Adherence to treatment • Fertility preservation • End of life issues • Survivorship

18. Treatment Adherence • Poor adherence 27% – 60% • Lack of organisation and support • Side effects or constraints on lifestyle • Alternative beliefs about treatment • Refusal is less common but challenging • Self harm or risk taking behaviour? • Symptom of deeper problems Kondryn et al. Lancet Oncol 2011; 12: 100-108.

19. Fertility and the Future • Techniques to store eggs / sperm for future use can be difficult and sensitive • Difficult issues for adolescents, parents (and oncologists) to discuss • Consent must come from the adolescent – refusal will be difficult to manage BahadurHuman Reproduction 2001 16 188-93

20. Facing Death • 25% of adolescents will not survive cancer • Decisions may need to be made about • Limits to treatment • End of life care for the patient and family • Patients have DNAR orders in place

21. Survivorship • Physical effects (10%) • Cardiac and respiratory • Functional & fertility impairment • Psychological • Cognitive deficit / delay • Anxiety problems e.g. PTSD (up to 20%) • Social • Challenge of re-integration • Disrupted education & career plans Desandes Cancer Treatment Reviews 2007 33 609-15

22. Ethical Issues • Establishing best interests • A conflict of ethical duties • Opposing wishes of adolescent and family

23. What are Best Interests? • Optimum physical, mental & social good • Who can judge; who can foresee the future? • Additional life at what price? • Burdens, and distress of treatment • Chance of improved or longer life

24. Conflict of Duties Respect for autonomy Beneficence / not doing harm

25. The Triangle of Consent Respect for the adolescent’s autonomy Parental views and authority Beneficence / not doing harm

26. Some Dilemmas • 15 yr old boy refusing to store sperm • 16 yr old girl becomes pregnant • Parents want to try alternative treatment • 17yr old refusing any further treatment

27. Strategies & Solutions • Facilitating care • Enhancing participation • Involving the family • Resolving refusal

28. Facilitating care • Adolescent units provide contact with peers • Age appropriate resources, and privacy • Therapies & interventions • Music, art, counselling or CBT • Specific requirements for care • Maintaining normality as far as possible

29. Participation

30. Participation • Active sense of participation • Potential benefits for empowerment & adherence • Must always be genuine, not token • Adolescents need true information • Teenagers may be very well-informed • Information may be distressing or unintelligible • Parents may disagree on what to tell adolescents

31. The Role of the Family

33. Role of The Family • Family coping strategy is critical • Parental stress & anxiety also high • Responses may worsen isolation or stress • Exposure of family tensions and rifts • Family therapy programs may help Evan Cancer 2006; 107: 1663-1671

34. Treatment Refusal • 17 year old refusing vascular access procedure for leukaemia treatment • Social problems, drugs, & depression • Despite mother’s consent, declared he would abscond (@ 18) or pull out line… From McCabe MA. (1996) Journal of Pediatric Psychology

35. Consent by Young People Parental consent valid up to 18 years Young Persons 16 -18 yrscan give effective consent to medical treatment Family Law Reform Act [1969] Gillick v West Norfolk and Wisbech AHA[1985] Children under 16 may give consent without parents Maturity to understanding risks & benefits of treatment Treatment must be in the young person’s best interests

36. Making Medical Decisions • Reasoning and decision making skills • 14 yr olds match adults (hypothetical scenarios) • Medical decisions involve concepts of; • Normal bodily function, Illness & death • Causation, risk and trade off • Stability of beliefs and desires • Emotional maturity and courage Weithorne& Campbell 1982

37. Competence is Decision Specific • Individual basis for assessment [GMC 2007] • Complexity of decision • Gravity of risks & consequences of refusal • Current state of health & emotions • Present environment and circumstances • Refusal of care? “ the law on parents overriding young people’s competent refusal is complex. You should seek legal advice if you think treatment is in the best interests of a competent young person who refuses”. [GMC guidance]

38. Law on Refusal by Minors Law’s silence on refusal by minors does not constitute an endorsement [Lord Balcombe, Re W [1993] 16 yrs anorexic girl refusing transfer to EDU Anorexia had removed capacity for rational decisions Parental consent is a sufficient ‘flak jacket’ for doctors Lord Donaldson Re W [1993] Child of 15yrs refusing blood due to beliefs Judge overruled, concluding “I find that he has no realisation of the full implications which lie before him as to the process of dying” Re E (a minor) [1993]

40. Law on Refusal by Minors Young persons views will increasingly be respected where they have experience & understanding of disease, and where refusal would be difficult to override. Courts unlikely to authorise distressing treatment which has only a small prospect of saving life. Hannah Jones (13yrs) convinced child protection officers that her prior treatment gave her sufficient insight to refuse a heart transplant. Johnston C, (2009) When no means no. Arch Dis Childhood

43. Respecting Autonomy Harm from overriding adolescent’s wishes Clinical Psychological Ethical Use of force is unlikely to be successful!

44. Conflict of Duties Respect for autonomy Beneficence / not doing harm

45. Absolute Refusal • Psychological evaluation & therapy • Competence, understanding, independence • Clinical Ethics Committee • Court Review • 2nd opinion, support for difficult decisions • Referral to another centre

46. Anaesthetists Can Help! • Understand the challenges for adolescents • Reduce the fear and pain of treatment • Allow choice over anaesthetic technique • Provide a fresh voice to the oncology MDT

47. Summary • Challenges of cancer for adolescents • Significant psychological & ethical issues • Anaesthetists as part of the whole team working for adolescents and their families

48. Thank You

49. Family Seeks Alternative Treatment 16yr old boy with osteosarcoma recurrence Parents sought alternative therapy outside UK Patient’s wishes were uncertain Team concerned that boy was under pressure

50. Refusal of Treatment • 17yr old with Hodgkin’s Lymphoma • Refused full staging investigations • Dictated care throughout treatment • Disputed medical opinion • Continued to refuse further care