Psychological & Ethical Issues

Andrew McLeodRoyal Marsden Hospital

Conflicts of interest noneImages kindly provided by Teenage Cancer Trust, and Royal Marsden Teenage Cancer UnitPrior consent for public display given

The Adolescent with Cancer

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

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

Things Can be Difficult Peer group approval and image are vital

Invincible but acutely self-conscious

Independent but without resources

Misunderstood and patronised

Adolescence 2013www & social mediaHand held devicesReady availability of drugs and alcohol

Early milestonesPressure to succeedLess supervision

Psychological Problems

Eating disorders (4 - 8%)

Substance abuse and risk taking

Depression and self harm (5-15%)

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

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

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

Too Much to Cope With?

Issues beyond a teenager’s maturity Frightening diagnosis Important treatment decisions Prospect of death or shortened life

Low Self Esteem

Discovering who you are Liking and valuing who you are Preserving self worth during cancer

Evan. Cancer 2006; 107: 1672-1679

Disengagement

Questioning all forms of authority Withdrawal and non-communication Non-cooperation or refusal

Depression & Anxiety

More intense than matched controls Significant symptoms will require treatment Preoperative anxiety common but unreported

Abrams Cancer Treat Rev 2007; 33: 622-630

Specific Challenges of Cancer

Adherence to treatment

Fertility preservation

End of life issues

Survivorship

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.

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

Bahadur Human Reproduction 2001 16 188-93

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

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

Ethical Issues

Establishing best interests

A conflict of ethical duties

Opposing wishes of adolescent and family

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

Conflict of Duties

Respect for autonomy

Beneficence / not doing harm

The Triangle of Consent

Respect for the adolescent’s autonomy

Parental viewsand authority

Beneficence /not doing harm

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

Strategies & Solutions

Facilitating care

Enhancing participation

Involving the family

Resolving refusal

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

Participation

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

The Role of the Family

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

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

Consent by Young People Parental consent valid up to 18 years

Young Persons 16 -18 yrs can 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

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 courageWeithorne & Campbell 1982

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]

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 doctorsLord 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]

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

Respecting Autonomy

Harm from overriding adolescent’s wishes Clinical Psychological Ethical

Use of force is unlikely to be successful!

Conflict of Duties

Respect for autonomy

Beneficence / not doing harm

Absolute Refusal Psychological evaluation & therapy

Competence, understanding, independence

Clinical Ethics Committee

Court Review 2nd opinion, support for difficult decisions

Referral to another centre

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

Summary

Challenges of cancer for adolescents

Significant psychological & ethical issues

Anaesthetists as part of the whole team working for adolescents and their families

Thank You

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

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