Caring for the Carer Dr Fran Orr Consultant Psychiatrist Chris O’Brien Lifehouse 27/8/14 27/08/2014 IWSML Dr Fran Orr 1 “Cancer” • Cancer is a families illness • Represents a major threat to family members and their functioning as a household • Worry about the patient dying or suffering from cancer • “Ripple effects” – Fears, uncertainty, disrupted life plans, rearranged schedules, routine, changed communications, existential worries, alteration in functioning and increased tension Lewis FM “The Family’s ‘Stuck Points’ in adjusting to cancer” in Psycho-Oncology, Holland JC et al Oxford 2010 27/08/2014 IWSML Dr Fran Orr 2 Carers_ who are they • • • • • • • • • In collaboration with GPs Spouses/partners Parents Children Grandparents Extended family Friends School community Work environment 27/08/2014 IWSML Dr Fran Orr 3 Medical carers_ time limited • Hospital community – Oncologists • Chemotherapy staff – – – – – – – 27/08/2014 Surgeons Radiation oncologist. Psychologists CNCs, Care-coordinators Clerical staff, patient navigators Psycho-oncology department Inpatient staff_ nursing, MOs, SWs, CL psychiatry • Psychologists _ wish list • And a myriad of others IWSML Dr Fran Orr 4 The carer • Care in the home→shorter in pa>ent stays – Service provision – 55-80% of long term care – 15% of Australian population involved in care giving do it within the home and without pay. (saves medical system approx $30bn a year [carers Australia 2007]) – Close relative • Spouse/Partner 40% • Parent 20% • Child 25% 27/08/2014 IWSML Dr Fran Orr 5 • Dementia patients, a degenerative disease – Typically old age, slow onset, long-term, sequential paGern →increase dependence. – Sad, but time for adjustment • Cancer patients – Every age, maybe abrupt and unexpected, maybe painful, uncertain trajectory, uncertain treatments, the next trial – Vacillates_ sickness and health, dying and illness – Roller coaster 27/08/2014 IWSML Dr Fran Orr 6 The Role for the Carer • Practical tasks – Shopping, transportation, hygiene, cooking • Medical tasks – Treatment administration and supervision – Assistance with other needs e.g. colostomy, catheters etc • Emotional role – The person with whom the patient shares “their cancer journey” 27/08/2014 IWSML Dr Fran Orr 7 Carers • May be overlooked – Detrimental to the carer’s physical and mental health and finances – Maybe musculoskeletal injuries No OHS – Higher rates of neglected health problems, including major depression, anxiety, panic attacks and stress compared with non-care giving counterparts – More distress, anxiety and unmet psychological needs than patients (often overlooked within the medical system). Holding it together. Incidence of depression and anxiety may be X2 the patients. 27/08/2014 IWSML Dr Fran Orr 8 • Incicednc of cancer diagnosis Australia a year – Approx 325+ per 100,000 men, 245+ per 100,000 women Cancer the leadign cause of death in Australia and “potential life years lost. “ Until last years little research lookoing at carers needs. 27/08/2014 IWSML Dr Fran Orr 9 • Spouses_ role as “part of the marriage”, go on even if onerous, need information and support • Children ( caring for parents, intergenerational) may view role as burdensome, seek support. – Younger children/adolescents may struggle to care for parent while individuating, may be resentful and irritable. May regress in behaviours. Unpredictable. 27/08/2014 IWSML Dr Fran Orr 10 • Spouse carer – Time spent: • Hours/week (ave hrs/day) 0-29 (4) 168 30-120(4-17) 168 (24/7) ? 30% 32% 18% 20% – Not just the time but control over it. • Multiple roles, little time to feel, sort through their emotions and not time to feel closer to spouse. • Some control, more time to feel, enhanced closeness. • Contradictory and confusing emotions of being a spouse and a carer. 27/08/2014 IWSML Dr Fran Orr 11 Emotional Support • Informal – Friends and family (distraction from or help overcome confusion) direct, phone, email – Use contacts with counselling or cancer experience • Formal – Counselling and psychiatric services • Validate coping strategies, relationship-focused interventions, concentrate on own emotions, respite, meditation, medication, use time positively, clarity about role and emotions, safe environment (rest) – Employee assistance programmes – Carers groups 27/08/2014 IWSML Dr Fran Orr 12 Support Groups • Cancer Council – Carers and patients. Tumour streams (prostate, brain, breast etc), on site or telephone group connections • Redkite Cancer age 0-24 (1800733548) • Bereavement groups (97675656) • Cancer Centres (Lifehouse 85140000) • Benefits – Safe place to express emotions, learn to control emotions, understand feelings, laughter, helping others, reassurance, shared informa>on, friendships → understand role and discuss emotions – Alternatives, lunch groups, men's’ sheds etc 27/08/2014 IWSML Dr Fran Orr 13 Practical support • Respite, – Maybe hours, carer support agencies • Financial Aid – Money Vs time caring – Reduced income, ↑ bills, • Centrelink (carers payment) not accessed due to stress, time demands, forms, pessimistic questions _ terminal illness, limited future) • IPTAAS (Isolated patients travel and accommodation assistance scheme) 27/08/2014 IWSML Dr Fran Orr 14 Carers and the system communication • Delivery of care at home, relied on by the system • Multiple clinicians, well intentioned, often communication variable. • Communication with medical staff • Advocacy, assertiveness, apprehension • Record keeping – Take notes • Added burden without support 27/08/2014 IWSML Dr Fran Orr 15 Requirements • Range of support services – Support groups – Information and networking forums – Counselling – Online support groups – Services available online and over the telephone – Include in medical interactions – Cancer nurses, coordination and support service, guidance. – Males less likely to discuss needs 27/08/2014 IWSML Dr Fran Orr 16 Impact and Information • Accepting spouse with cancer, emotional and stressful experience. Advocate and negotiate patient care as well and often with little support – Anxiety, stress, heart trouble, GI problems, depression, D&A use, separation/divorce. • Expect – Info on medical/technical equipment, (reduce ignorance/fear) – How to coordinate care_ discussion – Nursing task at home • psychosocial support if there is any, • Breast care nurses provide technical and psychosocial support information, coordination and broad information. (model for other tumour streams) 27/08/2014 IWSML Dr Fran Orr 17 Stress Points • The beginning – Diagnosis, prognosis, treatment discussions • Treatment / routine monitoring, may settle • • • • Major Reviews Recurrence Retreatment Terminal stage 27/08/2014 IWSML Dr Fran Orr 18 So like a zebra crossing 27/08/2014 IWSML Dr Fran Orr 19 Psycho -Oncology • Concerned with – Psychological, social, behavioral and ethical aspects of cancer. • Psychological dimensions – Psychological response to cancer at all stages – The psychological, behavioral and social factors that may influence the disease process. • Multidisciplinary (Holland JC, 1992) 27/08/2014 IWSML Dr Fran Orr 20 Lifehouse RPA • November 2013 • Lifehouse RPA, Dept of Psycho-Oncology • Approx 5 FTE – – – – – 27/08/2014 1Team Leader, SW, Therapist ( 1) 3 Clinical psychologists (1.8 psychologists, includes one as acting team leader) 1 social worker 1 trainee psychiatrist (0.6) 0.6 psychiatry. IWSML Dr Fran Orr 21 What do we do? • Provide a psycho social service for patients who are cared for at Lifehouse, their carers and families • See clients who are referred by – Clinicians at Lifehouse or RPA – General Practitioners – Self Referral _self or carers • Doesn’t include psychiatrist, can request referral 27/08/2014 IWSML Dr Fran Orr 22 Referral Process • Phone, 85140777, or form on internet • Weekly intake meeting. • Patient discussed and allocated. (if appears more urgent when referred may be contacted sooner) • May be seen by more than one clinician • For referral to psychiatry need a provider number 27/08/2014 IWSML Dr Fran Orr 23 The Big Picture • “30-40% of cancer patients fail to adapt and present with emotional disorders” * – Depression, Anxiety, Adjustment • “15-25% other significant psychosocial concerns”* – Health anxiety, irritable mood, demoralization or general emotional distress (these diagnosis reflect carers as well but maybe higher numbers) * Grassi L., Riba M., Clinical Psycho-Oncology. 2012 27/08/2014 IWSML Dr Fran Orr 24 What do we see? • • • • • • • • • • • • • • Anxiety disorders Adjustment disorders Depression (suicidal ideation) Distress PTSD Body image concerns Sexuality concerns Interpersonal problems Severe emotional problems Physical symptoms Fertility concerns Not coping Behavioural disturbance _Medication side effects other 27/08/2014 IWSML Dr Fran Orr 25 Survivorship • Cancer as a chronic illness • Survivors, may have significant – Physical, financial, occupational hardship – Psychological morbidity • Carers part of this process_ may be time where they “decompensate” seek help – Validate – Listen – Support • PENNY 27/08/2014 IWSML Dr Fran Orr 26 Management Assessment Plan for care, may involve other practitioner One off review or ongoing Frequency can vary (diagnosis, recurrence, progression, end of life, bereavement) • Individual, couple, family • May refer to groups • • • • • In future may be billed 27/08/2014 IWSML Dr Fran Orr 27 Interventions • Clinician assessment – Acceptance and Commitment Therapy – Cognitive Behaviour therapy – Supportive psychotherapy – Group therapy – Other therapies ( family, couples) – Telephone counseling – eclectic 27/08/2014 IWSML Dr Fran Orr 28 Other Services • The Living Room, Lifehouse RPA – 86140556 • Bereavement services – 97675656 • Mental Health Services – 1800 011511 27/08/2014 IWSML Dr Fran Orr 29 References • Carers of Cancer Patients: understanding their support needs. Olsen R, September 2009 Australian Government. Cancer Australia. • Psycho-Oncology 2nd Edn. Holland JC et al. Oxford 2010 27/08/2014 IWSML Dr Fran Orr 30 Rachel • 47, divorced 3 years – Jobe, ex husband Schizophrenia, difficult • Works part time • Financially, just manages • Rental accommodation, moved 4 times, 3 yrs – Now settled • Children Seth 14 and Ruth 11. “good kids” 27/08/2014 IWSML Dr Fran Orr 31 Presentation – – – – – Not feeling well several months Developed a cough _ X-ray showed a lung lesion Diagnosed with metastatic lung cancer, bone Developed pain in the back that limited mobility Admitted 4 weeks • Diagnosis and staging • Pain control • Radiotherapy • Tissue testing +ve for trial medication and, commenced treatment – Symptomatic benefit 27/08/2014 IWSML Dr Fran Orr 32 • Other stresses – Beloved father died 6 months prior of metastatic melanoma after a short illness. Nursed by Rachel. – Worried re ability of Jobe to care for children • He can’t – Best friends, a couple, overseas_ regular contact – Family a brave front – all distressed • Mother, Theresa, not coping, bereaved and grieving • Children_ quiet_ frightened • Siblings _ quiet_ practical (holding it together), WA 27/08/2014 IWSML Dr Fran Orr 33 • In hospital – Who would the carer be? • Mother initially_ stayed with children, kept things as normal as possible. Stresses related to driving in unknown areas, traffic, Fear for daughter, own grief. – In hospital referral to psycho-oncology » 2 sessions_ tearful supportive. » Contact with GP, had started Citalopram for depression • Brother, the Hills, assisted with children – Social work involvement 27/08/2014 IWSML Dr Fran Orr 34 • Social Worker – Advice re wills, enduring power of attorney – Phone numbers for support • Lifehouse RPA • Cancer council • Canteen – Regular sessions with patient, supportive and practical – Advice on financial assistance, carer pension etc 27/08/2014 IWSML Dr Fran Orr 35 • Psycho-Oncology – Psychiatrist (and Registrar) • Therapeutic sessions • Support for family • Giving back some control • • • • 27/08/2014 Diagnosis, distress, depression, anxiety. Was on citalopram when admitted, dose increased Changed to mirtazapine, also lorazepam Needed regular review IWSML Dr Fran Orr 36 • Palliative Care – Involved with pain management • Could also have been the Acute pain team • Discussion re management of circumstances and also assisted with delirium • Discussions with family 27/08/2014 IWSML Dr Fran Orr 37 • Siblings – One brother would talk opportunistically, clearly distressed, declined specific referral • Children – Ruth had school counselor, hadn’t managed well following divorce, easily stepped back into a therapeutic relationship, supportive. • Was quiet and moody, afraid, brave face, angry outbursts, Grandmother had to manage. Worried re personality – Seth, referred to Canteen, has found that useful. 27/08/2014 IWSML Dr Fran Orr 38 At Home • Initially at home: – Use the known – Continue the established – Try not to “medicalise” normal behaviour/reactions • Grand Mother – Moved in for awhile practical support – Ongoing psychological support • Lifehouse and GP – Friends involved/ frozen foods/rosters – Compacs • Children – Carer for mother when alone, stressful, fearful, concerns re abandonment – Known Counselor's more important, honesty important – Friends to continue “normal routine” transport to sport etc, security 27/08/2014 IWSML Dr Fran Orr 39 Services • Social Work – Inpatient to psycho-oncology as outpatient • • • • • • • • Psychiatry_ Grandmother and Rachel School Counselor Canteen Centrelink Compacs Home care Friends Family_ openly discussed supports can provide, hopeful but aware may not survive. 27/08/2014 IWSML Dr Fran Orr 40 Cindy • Inpatient • Divorced, 45, CALD, Mandarin speaking, 3 children F_20,university, M_16, M_12 financial difficulties, rental accommodation, sub standard. – Breast cancer with cerebral metastases – Delirium, Psychotic, paranoid, not eating – Carer was daughter 27/08/2014 IWSML Dr Fran Orr 41 Cindy’s daughter Seemed unaware of prognosis Worried re father in China taking brothers Social work involvement University counselors Practical support, discussions with nursing staff • Pressure to care for brothers, • Developing own relationship • • • • • 27/08/2014 IWSML Dr Fran Orr 42 Problems encountered English a second language Interpreters, shortage Explanations re medications treatment, RT, Assuring financial security Guardianship discussed (suspiciousness) Settled with RT and survived a further 18 months with reasonable quality of life • Significant impact on education and distress for children • Church group some supports • Psycho-oncology SW heavily involved, family therapy • • • • • • 27/08/2014 IWSML Dr Fran Orr 43 Joyce and Fred • Joyce 69, delightful, 2nd marriage, metastatic bowel cancer recently diagnosed. • Appeared to be noncompliant with treatment • Admitted with dehydration, having chemotherapy • Fred, 85, PMP, active self sufficient, independent. Supportive NOW fearful 27/08/2014 IWSML Dr Fran Orr 44 • ? Depressed • Joyce said not_ was, confused, Fred agreed, Dtr agreed. All felt changed 3 years ago, • Not as motivated or organized. H/O MCa CVA effecting right frontal and parietal lobe. Probably the cause of inability to organize self, apathy and amotivation • Fred admitted couldn’t cope, flustered, panicked. 27/08/2014 IWSML Dr Fran Orr 45 • Not wanting residential care • In past had not accepted services • Prepared to have home nursing – Practical support, meals provided for time being • Daughter visits when can, has adolescent, young adult children • Cancer unmasked a dependent relationship – Both probably cognitively impaired in different domains, Joyce (frontal lobe) Fred (?early dementia) • Psych-once review SW and Psychiatry • Will probably need supported accommodation at some stage. 27/08/2014 IWSML Dr Fran Orr 46
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