Occupational Therapy: Supporting Choice, Independence and Quality of Life Rebekah Boffa Occupational Therapist Caritas Christi Hospice, St Vincent’s Melbourne 3rd October 2013

Occupational Therapy Occupational therapists use their skills to help to optimise the individual’s function, promote dignity and support participation in essential and valued activities. Consistent with palliative philosophy, interventions are developed in consultation with patients, family and carers and support people to live and die in the place of their choosing (AOT draft position paper, 2013). “Doing” supports physical and mental functioning. Being engaged in meaningful occupations supports social relationships and enables development of self knowledge and supports self improvement (Lyons, Orozovic, Davis, & Newman, 2002). 3rd October 21013 Occupational Therapy: Supporting independence, choice and quality of life

Through Occupation We… Conceptualise the world Define ourselves Learn about ourselves Care for ourselves Connect with others Demonstrate our love and concern for others Contribute to society Connect with the spiritual Exercise choice Demonstrate our individuality Experience mastery 3rd October 21013 Occupational Therapy: Supporting independence, choice and quality of life

Occupational Therapy Occupational therapists working in palliative care: Support people to live in the face of dying Acknowledge that death is inevitable Acknowledge loss of function and the ongoing drive to be as active as possible for as long as possible Help people redesign their lives and life goals (Pizzi and Briggs, 2004) Provide support for physical, emotional and spiritual issues at end of life Recognise the carer as part of “the unit of care” Support people in being cared for in the place of their choice 3rd October 21013 Occupational Therapy: Supporting independence, choice and quality of life

Occupational Therapy Interventions O.T supports patients to achieve THEIR goals through; Assessment - Of Occupational Performance Care Planning - Psychosocial care - Home assessment - Equipment provision - Discharge planning Symptom Management - Equipment provision - Pressure care - Fatigue management - Pain and breathlessness - Maintaining occupational performance - Rehabilitation 3rd October 21013 Occupational Therapy: Supporting independence, choice and quality of life

Care Planning; Psychosocial Acknowledgement and validation of the patient’s difficulties and threatened existence can be powerful. This requires active listening and a preparedness to be uncomfortable, to sit with someone while they cry, to discuss intimacy, spiritual and existential issues. Acceptance, empathy and encouragement are important. Care for the carers and family is important. They too need validation and encouragement. 3rd October 21013 Occupational Therapy: Supporting independence, choice and quality of life

Home Assessment Usually completed with the patient A useful tool in promoting insight (patient/family), into care needs and clarifying future goals and expectations Emotionally and psychologically challenging Family feel empowered to ask questions they may not ask on the ward Minimise home modifications Understand risks of catastrophic events prior to undertaking home assessment May need to take PRN meds on visit 3rd October 21013 Occupational Therapy: Supporting independence, choice and quality of life

Home Assessment for End of Life Care Challenging but highly rewarding Often tight timelines Need to understand prognosis/disease progression Carers take the opportunity to ask all manner of questions Interventions include; counselling, education, exploration of issues relating to carer fatigue and degree of risk the individual/family are prepared to accept, prescription of equipment (hosp. bed, transporter commode, hoist wheelchair, pressure care equipment, call systems) Choose the room for delivery of care 3rd October 21013 Occupational Therapy: Supporting independence, choice and quality of life

Equipment – What does it mean? 3rd October 21013 Occupational Therapy: Supporting independence, choice and quality of life

Discharge Planning – What to consider? Avoid Friday discharges!!!!! Refer to Community Palliative Care Shared care - RDNS and Pall Care Provider Council services and PCA Alarms Trial discharge/overnight leave Planned Respite Buying in private supports and services Equipment and funding Access to allied health follow-up 3rd October 21013 Occupational Therapy: Supporting independence, choice and quality of life

Symptom Management; Pressure Care As individuals with pressure care problems frequently experience limitations in function and restrictions to their participation in meaningful occupation, pressure care is a core occupational therapy concern. (Macens, Rose, & Mackenzie, 2011) Best managed by a multidisciplinary team High personal and social cost Education of patient and family Provision of equipment for seating surfaces Maintenance of occupational performance Education of nursing staff 3rd October 21013 Occupational Therapy: Supporting independence, choice and quality of life

Fatigue Fatigue is one of the most commonly reported symptom in palliative care and can have a profound impact on quality of life. It is multidimensional and impacts the function, cognition and affect of the individual. Management of fatigue should be multidisciplinary: Education on Sleep Hygiene and the nature of fatigue Encourage exercise Modify activity patterns and task simplification Working out priorities Encourage nutrition and hydration Validate experience and acknowledge effort 3rd October 21013 Occupational Therapy: Supporting independence, choice and quality of life

Pain and Breathlessness Education Activity modification Equipment Comfort Breathlessness Education Relaxed breathing Activity modification Equipment 3rd October 21013 Occupational Therapy: Supporting independence, choice and quality of life

Maintaining Occupational Performance - why is it important? People in the palliative phase have diminished reserve and capacity to regain function Care needs increase with occupational decline Progressive debility and dependency is a cause of distress for many people with advanced cancer (Cheville, 2001) Dependence impacts quality of life, it impacts relationships and sense of self Palliative patients identify rehabilitation goals (Schleinich, et al, 2008) Functional decline can lead to longer inpatient admission 3rd October 21013 Occupational Therapy: Supporting independence, choice and quality of life

Why does decline in Occupational performance occur? Cancer disease and co-morbidities Cancer treatments and side effects Occupational disruption The hospital environment Our focus on comfort In 2011 a quality project explored inpatients sitting out of bed (SOOB) for lunch; Confirmed clinically observed low rate of SOOB – 53% 29% of patient’s with an AKPS of 40 SOOB for lunch 50% of patients for discharge planning SOOB 3rd October 21013 Occupational Therapy: Supporting independence, choice and quality of life

What does a program which aims to support occupational performance look like? Requires a ward culture where there is “buy-in” from all members of the team Strategies are in place to support orientation Patients are encouraged to participate in self care Encouraged to dress Encouraged to sit out of bed for meals and other periods during the day Encouraged to be mobile and engaged in meaningful activity 3rd October 21013 Occupational Therapy: Supporting independence, choice and quality of life

Occupational performance in action…. 3rd October 21013 Occupational Therapy: Supporting independence, choice and quality of life

Rehabilitation People have rehabilitation goals People feel less sense of abandonment and a greater sense of control (Bellchamber & Grousy, 2004) Participation has its own reward Rehabilitation possibilities can be overlooked 3rd October 21013 Occupational Therapy: Supporting independence, choice and quality of life

Case Study – “Peter” Acute Admission: MSCC Surgery Radiotherapy Pain Management Rehabilitation: OT and PT OT Home assessment Palliative Care: Assessment Symptom management Seating Pressure care Education Discharge planning Community: Pressure care Equipment Community access 3rd October 21013 Occupational Therapy: Supporting independence, choice and quality of life

Insights OT plays a significant role across the care continuum Diversity of OT role Patients require access to allied health as they deteriorate Despite advanced disease, patients have rehabilitation goals Without access to allied health, patients are at risk of premature admission to residential care OT is instrumental in supporting people to exercise choice, achieve independence and best possible quality of life until death 3rd October 21013 Occupational Therapy: Supporting independence, choice and quality of life

Rewards and Challenges Working backwards Conversations around death and dying Regularly seeing and interacting with distressed families Connecting but being able to detach Symptoms that are difficult to treat Rapid deterioration Predicting the course/prognosis Rewards Discharge against the odds! Assisting in the achievement of patient goals Being part of the journey to acceptance Promoting a “good death” The honour of being part of the journey 3rd October 21013 Occupational Therapy: Supporting independence, choice and quality of life

What are the Challenges for Occupational Therapists? To generate understanding of our role as more than equipment prescribers and discharge planners To lobby government and service planners for equity in access to occupational therapy for all people receiving palliative care, across Australia To remind the broader health community of the fact that many people receiving palliative care have rehabilitation goals Identify outcome measures and undertake research to demonstrate the effectiveness of our interventions 3rd October 21013 Occupational Therapy: Supporting independence, choice and quality of life

What are the Challenges for the Palliative Care Community? To remember that people with advanced disease, in the final stages of life value the opportunity to experience independence, exercise choice, demonstrate care, experience mastery and to have access to rehabilitation services which enable them to live until they die Reflect on practice to ensure that structures, systems and delivery of care do not adversely impact occupational performance Speak with people about their rehabilitation goals When planning services, include adequate allied health resource allocation 3rd October 21013 Occupational Therapy: Supporting independence, choice and quality of life

References Australian Occupational Therapy Association Oncology and Palliative Care Special Interest Group Submission to the Senate Committee Inquiry into Palliative Care Services in Australia. (2012). Australian Occupational Therapy Association Draft Position Paper (2013) Occupational Therapy in Palliative Care Belchamber, CA., & Grousy, MH. (2004). Rehabilitative Care in a Specialist Palliative Care Day Centre: a Study of Patient’s Perspectives. International Journal of Ther Rehabilitation 11: 425- 434 Cheville, A., (2001). Rehabilitation of Patients with Advanced Cancer, Cancer Supplement, Vol. 93, No. 4, 1039 – 1048. Frost, M. (2001) The Role of Physical, Occupational and Speech Therapy in Hospice: Patient Empowerment. American Journal of Hospice and Palliative Care , Vol. 18, No. 6, 397 - 402 Lyons, M., Orozovic, N., Davis, J ., & Newman, J. (2002)., Doing-Being-Becoming: Occupational Experiences of Persons with Life-Threatening Illnesses. American Journal of Occupational Therapy Vol. 56, 285 – 295. 3rd October 21013 Occupational Therapy: Supporting independence, choice and quality of life

References Macens, K., Rose, A., and Mackenzie, L. (2011). Pressure Care Practice and Occupational Therapy: Findings of an Exploratory Study. Australian Occupational Therapy Journal, Vol. 58, 346-354. Morgan,D. & White, K., (2012). Occupational Therapy Interventions for Breathlessness at the End of Life. Current Opinion Supportive and Pallliative Care, Vol. 6, 138 – 143. Pearson, E., Todd, J., and Futcher, J, (2007) How can Occupational Therapists Measure Outcomes in Palliative Care? Palliative Medicine , Vol. 21, 477 – 485. Pizzi, M. & Briggs, R. (2004). Occupational and Physical Therapy in Hospice; the Facilitation of Meaning, Quality of Life and Well Being. Topics in Geriatric Rehabilitation, Vol. 20, No. 2 , 120 – 130. Wilcock, A. (1998). An occupational perspective of health. Thorofare, NJ: Slack. 3rd October 21013 Occupational Therapy: Supporting independence, choice and quality of life

3rd October 21013 Occupational Therapy: Supporting independence, choice and quality of life