occupational therapy: supporting choice, independence and quality of life rebekah boffa occupational...

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: Supporting independence, choice and quality of life3rd October 21013

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).


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


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


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


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.


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


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


Equipment – What does it mean?


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


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


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


Pain and Breathlessness

Pain

• Education

• Activity modification

• Equipment

• Comfort

Breathlessness

• Education

• Relaxed breathing

• Activity modification

• Equipment


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


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


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


Occupational performance in action….

Occupational Therapy: Supporting independence, choice and quality of life

Rehabilitation

3rd October 21013

• 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


Rehabilitation:

OT and PT

OT Home assessment

Acute Admission:

MSCC

Surgery

Radiotherapy

Pain Management

Palliative Care:

Assessment

Symptom management

Seating

Pressure care

Education

Discharge planning

Community:

Pressure care

Equipment

Community access

Case Study – “Peter”


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


Rewards and Challenges

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

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

3rd October 21013


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


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


References

3rd October 21013

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.


References

3rd October 21013

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.

occupational therapy: supporting choice, independence and quality of life rebekah boffa occupational...

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