Transcript Adolescent with Cancer - Home Page | Association of

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
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 2013
www
& social media
Hand held devices
Ready availability of
drugs and alcohol
Early
milestones
Pressure to succeed
Less 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%)



Psychological



Cardiac and respiratory
Functional & fertility impairment
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 views
and 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


Therapies & interventions


Age appropriate resources, and privacy
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


Medical decisions involve concepts of;




14 yr olds match adults (hypothetical scenarios)
Normal bodily function, Illness & death
Causation, risk and trade off
Stability of beliefs and desires
Emotional maturity and courage
Weithorne & 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 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]
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