Rehabilitation in Palliative Care: Restoration of patient to person Cathy Payne Doctoral Fellow All Ireland Institute of Hospice and Palliative Care Rehabilitation in Palliative Care Palliative care rehabilitation at its best is the transformation of the dying into the living. The restoration of a patient to a person Doyle et al (2004, p 3) Patient: a person receiving or registered to receive medical treatment Person: a human being regarded as an individual Definitions: Patient: a person receiving or registered to receive medical treatment Person: a human being regarded as an individual http://oxforddictionaries.com/words/the-oxford-english-dictionary 1
Why Rehabilitate? You matter because you are you. You matter to the last moment of your life and we will do all we can not only to help you die peacefully but to live until you die. Dame Cicely Saunders, founder of the modern hospice movement Dame Cicely Saunders total pain model Sharing Expertise Patient Experience of illness Social circumstances Attitude to risk Values Preferences Clinician Diagnosis Disease aetiology Prognosis Treatment options Outcome probabilities Coulter 2001 2
Rehabilitation Classification: Preventative disability predicted & appropriate prior training can reduce the severity of its effect Restorative disability expected to result in only minimal or residual handicap Supportive disability must be tolerated & appropriate gains made toward control of problems & improvement in performance Palliative basic disability cannot be corrected but training can aid performance Dietz, 1981 Palliative Rehabilitation Aim: To enhance the quality of life, no matter how short or long the timescale of that life, using a multidisciplinary model of care Maximising Optimising physical function Promoting independence, opportunity, control and dignity Responding quickly to help people adapt to their condition Taking a realistic approach to defined goals Continually evolving, taking the pace from the individual (NICE, 2004) Challenges to Palliative Rehabilitation Perceptions of the public Perceptions of other HCPs Our own values and beliefs Which people and when? 3
They taught me how to lift in an environment that was totally different from our house and with someone to help me. The whole point is that I m on my own doing the lifting. Husband of a lady with MS Scottish Partnership for Palliative Care, 2006 Medical Advances Medical advances are changing acute lifethreatening episodes into chronic life-limiting conditions patients living longer greater periods of ill health blending of radical and palliative therapy Therapy offered is dependant on the views and perceptions of HCPS, availability or rationing of resources the changing expectations of patient s, carers and society 4
ACTIVE LIVES FROM BIRTH Eurostat Yrs. of healthy life MEN Ave. age of death Yrs. of healthy life WOMEN Ave. age of death DENMARK 62.3 77.2 61.9 81.4 NORWAY 69.9 78.8 69.7 83.3 SWEDEN 71.1 79.6 71.0 83.6 ICELAND 69.3 79.8 67.9 84.1 FINLAND 58.5 76.9 57.8 83.5 IRELAND 65.9 78.8 66.9 83.2 UK 65.1 78.8 67.5 82.6 ec.europa.eu/eurostat based on 2010 figures ACTIVE LIVES FROM AGE 65 Eurostat Yrs. of healthy life MEN Ave. age of death Yrs. of healthy life WOMEN Ave. age of death DENMARK 76.8 82 77.8 84.7 NORWAY 79.5 83 80.7 86.2 SWEDEN 79.1 83.3 80.5 86.2 ICELAND 78.4 83.3 79.8 86.5 FINLAND 73.8 82.5 73.9 86.5 IRELAND 76.1 83.1 76.2 86.1 UK 75.9 83.3 76.8 85.9 ec.europa.eu/eurostat based on 2010 figures Patient Variation Illness can progress more/less rapidly than predicted Degree of co morbidity Family acceptance of palliative status Willingness to receive palliative care Degree of pain or other symptom interference Unique & highly personalised goals of care Desire to spend remaining time with loved ones Level of financial/domestic resources Demands of concurrent therapy Investment in continued therapy (NICE 2004) 5
My husband and son were marvellous but they were at work and they would have to stay off work and lose their money. I could have cried for the pills and injections but I knew I mustn t. Everything seemed to be against me and nobody seemed to understand. Lady being asked about her uncontrolled pain Monroe & Oliviere 2003 What support do patients currently receive? Patients and carers don t realise that there is a difference between palliative care and terminal care. They are often scared to tap into services available because of this misconception. Generic physiotherapist Scottish Partnership for Palliative Care, 2006 6
Cancer Cachexia Can we offer our patients more than tea, sympathy and supplements? Cachexia A multi-factorial syndrome defined by an ongoing loss of skeletal muscle mass (with or without loss of fat mass) that cannot be fully reversed by conventional nutritional support and leads to progressive functional impairment Requires MDT management to increase lean mass (Fearon et al 2011) Integrated physiological response of substrate mobilisation driven by inflammation This response is paralleled by an energy storage response during periods without inflammation when nutrients are available 7
The Dual Threat of Inactivity and Stress on Skeletal Muscle Volume Leg phenylalanine net balance (nmol/min/100ml) Ferrando et al 1999 Cancer Cachexia Classification for Clinical Use SIPP Cancer Cachexia Assessment Tool Storage: Weight loss compared to usual weight, duration of loss, fluid retention/obesity Intake: Anorexia, early satiety, chemosensory, % normal intake, 1-2 day dietary record, secondary nutrition-impact symptoms Potential: Tumour [catabolic] activity, prognosis, C- reactive protein Performance: Physical functioning, muscle strength, psychosocial consequences Fearon et al 2011 Stages of Cancer Cachexia Fearon et al 2011 8
Fearon et al 2011 How Do We Turn a Team of Palliative Experts into an Expert Palliative Rehabilitation Team? J Impact of rehabilitation: Able to walk with a zimmer Able to sleep in own bed No change to pain/numbness Able to live a life Worked miracles Got a warm welcome and love 9
Physical Activity Works Exercise is effective for cancer at all stages, but more research is needed to identify optimal type, intensity and timing in advanced illness More work needed to assess multi-modal approaches combining physical activity interventions especially in advanced cancer Lowe et al 2009 P Impact of rehabilitation: Significant reduction in arm girth Significant improvement in function and decreased infection rates Social aspects of day therapy Improved compliance with other treatments Adherence to Advice "Life threatening health events prompt psychological distress that may motivate individuals to reduce health risks... interventions timed to take advantage of these teachable moments could be particularly effective (McBride 2000) 10
Does It Matter Who Provides the Advice? Staff who are knowledgeable about the specific needs of people with or recovering from cancer is important This contributes to feelings of safety and confidence (Speck et al 2010; Social Research Centre, 2011) Palliative Rehabilitation In Northern Ireland Breast cancer Rehab Initiative for Living Life (BRILL) A feasibility project, based on self-referral, to address quality of life issues after breast cancer surgery Patient-centred supportive care - encompassing patient s needs - for life either with cancer or after cancer 10 weeks of 1 hour varied exercise groups (for 10 people) at leisure centres. Followed by informal health information provision Time to meet and chat with other people with experience of breast cancer 11
Breast cancer Rehab Initiative for Living Life (BRILL) Subjective outcomes: started the programme as a patient.. finished as a whole person again Objective Outcomes: significant increase (p=0.009) in QoL scores from baseline to post-intervention Back on Track Completed initial cancer treatment Walking Groups Leisure centres Home Activities Exercise Groups Aim: to translate research on the importance of wellbeing and the use of exercise programmes into the management of CRF Back on Track (Feb-May 2011) 8 week exercise programme agreed with each participant. The vast majority of the participants rated the programme 10/10 for goals [It] did what it said really helped fatigue, more energy I feel I have got my life back [has been] life saving 2 males 16 females Aged 40-60 yrs: 8 Aged 61-85 yrs: 10 Breast 15 Colon 1 Myeloma 1 Prostate 1 12
Back on Track Participant I think it s time that the powers that be realised that this aspect [exercise with professional support] is just as important as having chemotherapy. They re very, very slow to take it on board. I think medicine now has got [to a point where] we re not looked at as a whole person, we re looked at in little bits, by different people, [who] treat little bits of us. Nobody takes the whole of us into consideration (Social Research Centre 2011) Marie Curie Hospice, Belfast Well Being Clinic Improvements in the physical performance tests indicate that physical exercise can contribute to maintaining and improving physical function and independence for at least some time in patients within palliative care APRIL study Aim: To feasibility test a novel active palliative rehabilitation intervention (APRIL) in individuals with advanced inoperable NSCLC receiving palliative chemotherapy treatment. 13
Programme Structure Individualised 6 week home based palliative rehabilitation intervention programme Physical activity Resistive exercises Cardiovascular training Stretching Nutritional component Nutritional symptom management Optimisation of macro and micronutrient intake Weekly telephone review and goal reassessment What have we learnt from our patients? Palliative rehabilitation is the concern of all health care professionals Rehabilitation in palliative care does not have to cure symptoms in order to be of benefit Where a person fails to adhere to our advice we must consider how we are failing to meet their needs and review treatment plans/goals accordingly Palliative Rehabilitation is a Complex Intervention A complex intervention is not the sum of its parts! (Hawe et al 2004) We need resilient clinicians and managers and resilient services to enable resilient people to adapt to the impact of their illness and commit themselves to change (Tookman, 2004) 14
Professional Challenges Urgent need for: subgroup and further subgroup analysis of palliative participant response to our interventions standardised reporting of outcomes agreement of the minimum duration of studies & minimum % change in symptom experience that provides sufficient evidence of the benefits of an intervention Payne et al 2012 Join the Debate on Facebook Palliative Rehabilitation https://www.facebook.com/home.php#!/groups/110818868948811/ Embracing Definitions! Patient: a person receiving or registered to receive medical treatment Person: a human being regarded as an individual http://oxforddictionaries.com/words/the-oxford-english-dictionary 15
Tak c.payne@ulster.ac.uk 16