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

2. 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

3. 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

4. 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

5. 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

6. 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

7. 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

8. 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

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

10. 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

11. 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

12. 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

13. 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

14. 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

15. 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

16. 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

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

18. 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

19. 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

20. 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

21. 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

22. 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

23. 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

24. 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:
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,
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

25. 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,
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

26. 3rd October 21013
Occupational Therapy: Supporting independence, choice and quality of life