Distress in gynae-oncology patients

Relevance Common1

Easier to intervene early Simple interventions can be very

effective2

Communication skills core2

May impact on treatment and complications (and on outcome in terms of QoL, not survival)3

The five d’s of cancer Death Disability Disfigurement Decline Dysfunction What everyone thinks of when they

hear the word cancer

Gynaecological cancers Fertility issues Sexuality effected directly and

indirectly Diagnosis often delayed Treatment invasive Stigma1

Gynaecological cancers Ovarian Late diagnosis

common Vague symptoms1

Family risk2

Chronic3

Cervical Multiple adversity4

Young women Impact on sexual

function5

stigma

Phases of the journey Initial diagnosis/awaiting results Awaiting treatment Treatment Post treatment/survivorship Recurrence Advanced disease Palliative care/dying

Initial diagnosis/awaiting results Breaking bad news (staging)1

Uncertainty/dread/anticipation of grim process and outcome (cancer = slow death)

On-going symptoms (pain) Shock/disbelief 2

What to disclose to others (children)3

Medical juggernaut4

Financial and other practical concerns5

Awaiting treatment ‘Busy’ activity –

displacement/denial/effort to establish sense of control1

Decision making – information2

Nobody is ‘doing anything’3

Disclosing to others – dealing with comments4

Adapting to diagnosis of cancer when not ‘that ill’

Treatment General1

Anxiety Trust Information Choices Access/cost2

Impact on role3

Impact on others3

The patient role4

Surgery Pain Disfigurement Impact on sexual

function Stoma Ward vs. home3

Treatment Chemotherapy Nausea Hair loss1

Fatigue2

Complications3

Time demands Travel demands5

Radiotherapy Invasive Embarrassing Fatigue2

Bowel problems Skin problems4

Time demands Travel demands5

Post treatment: 1 Residual symptoms1

Residual side effects (fatigue) Body image2

Sexuality changes2

Meaning of physical experience changes1

Menopause Expectations of ‘recovery’ (including the

expectations of others)3

Post treatment: 21

Existential issues – self/future altered – life plans “stolen”

Impact of loss of fertility/other functional losses Grief at multiple losses Anxiety around reviews/scans/tumor marker

levels2

Concerns about family risk (esp. daughters)3

How is information about risk/recurrence presented/understood4

Recurrence “Bad news” consultation More treatment vs. no treatment1

Dealing with others2

Implications3

Symptom management Existential issues (“why me”)4

Advanced disease Hope of cure1

Ongoing burden of care2

Uncertainty – living from test to test ‘tied’ to the health care system3

Alternative/complementary therapies1

New treatments (chemo) but not offer of cure1

Legal/financial issues4

Palliative care/dying Deteriorating function – multiple

losses one after another Loss of role (effort of refashioning)1

Dependence on others (burden)2

Family/carer stress and ways of coping3

Legal/financial issues4

Management issues Sleep Nausea Pain Body image Sexuality Menopause Anxiety incl. specific phobias (needle) Depression

Useful skills Eliciting concerns Eliciting symptoms (mood) Problem solving Relaxation Sleep management “support” Prescribing

Adjustment (Disorder) Patterns of coping usually life-long They are a reflection of ‘personality’ Main differential diagnosis – mood

disorders (depression/anxiety disorders)

Grief/loss are often themes

Coping – ways of doing it Helpful Humour Family/friend networks Focus on specific

problem(s) & solution(s) Exercise Distraction (pleasurable

activity) Spiritual practices Goal setting (realistic)

Unhelpful Alcohol/drugs Avoidance Blame (self/others) Focus on emotions Too much/too little

dependence Global definitions of

problems Inflexibility Struggle for control

Mood symptoms Anxiety Agitation Return to same

issues/questions Seek reassurance Seek control Initial insomnia

(worry) Focus on negative Poor retention of new

information

Depression Loss of pleasure Waking in the early

hours of the morning Loss of motivation Preoccupation with

death Feeling a burden on

others Non-compliance/

futility

Help! Referring on

Local/generic Website1

NSW Cancer Council Support groups Local D&A and mental

health services Community health (social

workers) Relationship counselling Pastoral care

Specialist services Sexual health clinics Menopause clinics Women’s health

centers/clinics Social work services

through hospital gynae-onc centers

Sex therapy Clinical psychology Psychiatry

REMEMBER! All of this has an impact on the staff

providing care This means you