Move it or lose it, as the saying goes, is relevant to the field of palliative care. In fact, evidence suggests that up to 30% of muscle weakness in advanced illness can be due to inactivity itself.
Physiotherapists are in a prime position to make a difference to how patients experience end of life by helping them maximise their independence at each stage. Expertise in functional assessment combined with an understanding of the impact of symptoms on the lived experience enables therapists to work closely with patients to improve their quality of life (QOL).
It is much easier to preserve function than regain it - as anyone who has made a get fit New Year’s Resolution will appreciate! Early referral and ongoing engagement with physiotherapists will guide appropriate exercise interventions, enable timely implementation of supportive equipment and create a therapeutic relationship of trust and care. These factors contribute to maximising function and independence - a major measure of QOL.
Whilst definitive parameters around exercise type, intensity and duration may not be in the bag just yet, implementation of graduated programs respectful to a patient’s overall symptom burden and within the context of the disease trajectory can be effective in promoting function and autonomy. Patients also identify the important psychological benefits of exercise including improved mood, sense of control and wellbeing. It can also be fun! An example of a hospital based palliative care gym program can be viewed here.
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Let us now consider the story of James, a 46-yr. old man diagnosed with advanced prostate cancer. The presence of extensive bony metastases resulted in severe pain and a fear of movement. Married with 2 young children he had significantly limited his activity due to uncertainty and fear of falling. He felt increasingly fatigued and was spending most of his day at home resting.
Referral to a hospital-based outpatient palliative care gym allowed him to gradually increase his exercise levels under supervision. Activities such as recumbent cycling, resistance bands and balance training improved his function and confidence in his body. His mood and sense of belonging increased and he became a committed gym junkie, attending 3 times per week. At times, increased disease activity and pain required further radiotherapy and pharmacological input. He would still make appearances at the gym over these periods to maintain the routine, structure and support he needed.
“It gives you a good feeling of – of not only you’ve done something but you feel better”
Confidence and support through access to professional advice, socialisation and a shared illness experience normalised his situation and helped him forge an identity away from his illness.
"I’m tending to put the sickness in the back of my head and worry about it when it comes up”
He re-engaged with family life – cooking meals and walking his girls to school. He was able to return to his great passion – fishing with his mates. He didn’t catch many fish but he did catch onto life for another 16 months.
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Exercise is also a component of the non-pharmacological approach to management of other symptoms such as fatigue and breathlessness. Therapists utilise this and interventions such as breathing techniques, energy conservation and walking aids to empower patients to have mastery over their symptoms.
Understanding the role of physiotherapy in palliative care can be challenging. I have received referrals indicating that patients are sent to palliative care from the acute system because there is ‘nothing more that can be done’. And yet patients are often keen to be engaged with therapy and identify goals to promote their sense of control and meaning. The End-of-Life Essentials training and PCC4U are useful programs to support therapists in learning and practice change.
Related sites:
CareSearch Physiotherapy
Promoting the role of physiotherapy in Palliative Care
Roslyn Savage, Senior Palliative Care Physiotherapist, Sacred Heart Supportive and Palliative Care Service, St Vincent’s Health Network Sydney