A Rehabilitative Approach to Palliative Care

Transcription

1 A Rehabilitative Approach to Palliative Care to support Life and Living in advancing illness Rebecca Tiberini Specialist Palliative Care Physiotherapist Therapy Services Manager

2 Steep increase in deaths from deaths per year deaths Calanzani, Higginson and Gomes 2013 Increased Number Deaths 2035 people aged 85+ will account for 49.5% (328,469 deaths) Calanzani, Higginson and Gomes 2013 Longevity compromised: people living with and dying from chronic diseases. Increased frailty. Aging Population Increased Disability cancer - 30% men, 12% women Olsen 2008 cancer survivors - 23% over 65 by 2040 Maddams et al 2012 dementia - > 1 million by ½ million undiagnosed in 3 aged > 65 dying with dementia Alzheimers Society 2012 Older people more likely to have complex problems and disabilities Better palliative Care for Older People. WHO Europe 2011 Increased Dependence on Carers Decrease proportion younger people, fewer family members available to provide care, families more dispersed. Likely to be elderly also. Gomes, Cohen, Deliens et al 2011 Payne EAPC Taskforce on Family Carers 2010 Increased Demand on Health and Social Services Decrease in health/social care professionals and paid carers.? Sufficient services to meet growing need? Specialist skills and knowledge? Who will meet cost financial implications

3 Increased Demand for Palliative Care Services

4 Who? How can we support elderly patients? How can we support patients with multiple co-morbidities, dementia, frailty? How can we support carers to support patients? Which professional specialities need to be involved? Where? How can we support patients wishes PPC/PPD? Which settings should hospice care be delivered in? Palliative Care Fit for the Future How? How can we meet growing demand for Palliative Care Services without compromising quality? Financially viable? How can we meet the cost of care/ reduce the cost of care? When? When should palliative care be involved? What can we do now to prepare for the future palliative care needs of our population?

5 How can we meet the escalating need for Palliative Care provision in the future and support life and living in patients with advancing illness?

6 Developing a Rehabilitative Approach to Palliative Care

7 What are the aims of Rehabilitation in Palliative Care? To help individuals to achieve the fullest physical, psychological, social, vocational and educational potential consistent with his or her limitations and goals Santiago-Palma and Payne 2001 To provide them with the tools to adapt their lives towards a higher level of independence WHO 2001 Promoting Independence

8 Re-habilitation the reduction of functional deficits without necessarily reversing the underlying biology of the disease Tallis 1992 Helping patients to adapt to their new state of being in a positive way rather than re-turn to their previous level of function

9 Empowers Patients through Self-Management the individual s ability to manage the symptoms, treatment regimes, physical and psychosocial consequences and lifestyle changes inherent in living with a chronic illness Barlow et al 2002 enables patients and their families to better manage their disease, create new meaningful behaviours and life roles, and adjust to their situation-induced emotions Corbin and Strauss 1988; Lorig and Holman 2003 empowers individuals to cope with disease by developing selfefficacy or increased confidence Bodenheimer et al 2002

10 Active support system to enable patients and families to anticipate and constructively adapt to losses encountered along the journey of advancing illness

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12 Most palliative patients express a desire to remain physically independent during their disease course Yoshioka 1996, Morris et al 1986

13 In patients with advanced disease pronounced infirmity and poor prognosis must be distinguished from functional improvement which is possible in most patients Cheville 2001 Rehabilitation focused on eliminating or reducing disability alongside maximising functional status, physical independence and quality of life is appropriate for patients with advanced disease and very limited life spans Montagnini et al 2003

14 Rehabilitation Symptom orientated is not a contradiction to Multidisciplinary Approach Complex interventions Maximise quality of life for patients and their families Involve patient and family in care planning Maximise physical function and emotional wellbeing Holistic Palliative Care Cheville 2001 Olson et al 2005 Siegert 2009 Waldron et al 2011

15 All the work of the professional team... is to enable the dying person to live until he dies, at his own maximal potential performing to the limit of his physical and mental capacity with control and independence whenever possible Dame Cicely Saunders

16 CANCER Policy Implications Commissioners and providers should institute mechanisms to ensure that patients needs for rehabilitation are recognised and that comprehensive rehabilitation services are available to patients in all care locations OLDER PEOPLE NICE Improving Supportive and Palliative Care for Adults with Cancer 2000 Evidence of effectiveness of rehabilitation in several welldefined and important clinical areas relevant to older people. Health commissioners must be urged to provide resources for rehabilitation services Good Practice Guidance British Geriatric Society 2012 Older people: Independence and mental wellbeing in progress Nov 2015

17 What does a rehabilitative approach to palliative care look like in practice?

18 Case Study Alf 77 Advanced Lung Cancer History of severe COPD Frail and deconditioned Marion Main carer

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20 Rehabilitation as an approachto patient care Involvement of the interdisciplinary team is central to the success of a rehabilitation approach Fialka-Moser et al 2003 Rehabilitation should be acknowledged as an approachto treatment rather than a term to describe a few specific therapies MP Team Family Patient Mason 2000 Physiotherapists and other Allied Health Professionals possess the specialist expertise to lead the multi-professional team in non-pharmacological symptom management and rehabilitative care To ensure truly patient-centred care the whole multi-professional team must work collaboratively to rehabilitate Cane, Jennings, Taylor 2011

21 Rehabilitative Initiatives Physiotherapists undertake First Contact Assessment for patients whose primary needs are amenable to non-pharmacological or rehabilitative management All patients have an assessment of function as core component of holistic assessment undertaken by any member of interdisciplinary team

22 Functional Assessment Screening Palliative Care Network International Palliative Care Network Lecture Series 2013

23 Enablement Focus to Care to empower patients to be actively involved in care and remain as independent as possible Establish and maintain patients normal daily routines assisted wash in bathroom dressed in clothes patients make own tea/breakfast meals sitting out in chair Patients personal rehabilitation goals and activity programme Patients room to promote ownership and self management. Interdisciplinary Care Plans. Discussed at MDT meetings Symptom Control considered within context of function Enablement Assistants Combination HCA + Rehab Assistant role Rehabilitative approach to care Enablement Units care corresponds to home situation graduated discharge

24 Rehabilitation Groups

25 Self Management Programmes Educating patients and carers to understand their condition and symptoms Have a range of practical techniques and strategies to manage these independently Promote confidence, self efficacy, mastery Share experiences and provide social support Breathlessness (ICon: In Control of my Breathing) Fatigue (Re-Energise) Falls Prevention Nutritional Wellbeing (outpatient dietetic and speech and language therapy clinics) Pain

26 Empowered Living Team Team of volunteers trained by Therapies professionals Support patients to work on rehabilitative programmes in the community: 1hour/week for 8 weeks Provide support to patients to embed behaviour change and self management strategies

27 Physical Improve mobility and function Maximise Independence in ADL s Physical Reduce fatigue Decrease secondary complications (pressure sores, chest infections, joint contractures) Psychological Improve confidence/ motivation Improve self rated health Psychological Decrease feelings of dependency Reduce/prevent depression Maintain dignity Improved Quality of Life Social Maintenance of role Social Decreased burden on carers and family Reduced social isolation Spiritual Promotes realistic hope Reduces helplessness -promotes empowerment Spiritual Supports adaptation to and acceptance of loss Maintains self worth

28 What is the Evidence to support Rehabilitation in Palliative Care?

29 Growing body of evidence that rehabilitation interventions improve functional status, quality of life, and symptoms such as pain and anxiety in palliative populations Javier and Montagnini 2011

30 Cancer Jones et al patients with advanced, recurrent haematological and breast cancer Outpatient (London, UK) RCT (wait list controlled) Complex, MDT Rehabilitation Intervention Improved psychological status (Psychological subscale SCNS p = ) Decreased Resource use Likely cost effective Oldervoll palliative cancer patients (121 Exercise, 110 usual care) Outpatient Hospital (Norway) RCT Phase II Trial Exercise Programme (8/52 2x 60min/wk) Improved functional status Range physical outcomes. Large statistical & clinical effect (6 min walk test p=0.08) No significant change in fatigue (p=0.53) Scialla et al Elderly patients with cancer asthenia (mean age 75.3) Inpatient Hospital (USA) Marciniack palliative cancer patients Inpatient Hospital (USA) Yoshioka terminal cancer patients Inpatient Hospice (Japan) Retrospective r/v Retrospective r/v Retrospective r/v Multidisciplinary Rehabilitation Programme 24% improvement FIM (clinically significant improvement in physical and cognitive function) Multidisciplinary Rehabilitation input 31% improvement in function FIM (p=0.01) Metastatic disease made no difference to outcomes Physical Therapy Programme 80% patients exp functional improvement Mean 27% improvement BMI (clinically significant change function)

31 COPD Heart Failure Multiple Sclerosis Lacasse et al 2009 Puhan et al RCT s 890 COPD patients 9 RCT s 432 COPD patients Range of disease severity Davies et al 2010 Khan et al RCT s 3647 participants with Heart Failure 7 RCT s 747 patients with MS Range of severity Range of settings Range of settings Range of settings Cochrane systematic reviews + meta-analysis Cochrane systematic review Cochrane systematic review Pulmonary Rehabilitation Range of rehab programmes Range of rehab programmes Relieves dyspnoea and fatigue Improves patients physical and emotional function and control over the disease Decreases hospital admissions All outcomes moderately large and statistically significant Improvements regardless of disease severity Non-significant trend towards decreased mortality Improved exercise capacity Significant reduction in hospital admissions Significant improvement in Quality of Life Independent of degree of heart failure No change to impairment but improved patient experience and Quality of life Increase levels of activity and participation

32 Older People Dementia Crocker et al 2012 Pereira et al 2010 Yu et al 2005 Pitkala et al 2013 Physical Rehab Older People Long Term Care. 67 trials participants Aged > 65 Permanent long term care Cochrane Systematic Review (RCTs) Rehabilitation intervention to maintain or improve physical function Effective in reducing disability. Few adverse effects. Improvement in physical function (small but significant): Barthel 6 points p FIM 5 points p 0.01 RMI 0.7 points p 0.04 TUG 5 sec p frail elderly patients. Multiple comorbidities Average age 81 Geriatric Day Hospital (outpatient) Retrospective Cohort Analysis Multi-professional goal based rehab to increase functional independence. 2 x week Effective in improving physical performance: 58% successful improvement (3/6 tests) Barthel 45% TUG 63% Gait Speed 21% Berg balance 45% Grip Strength 45% Eqol-5D 45% 201 Older Adults. Average age Intact cognition 76 Cognitive impairment Outpatient rehabilitation Retrospective Cohort design Individualised, multi professional rehab programme: 2hrs, 2-3x/wk, 4-6 wks ALL improved level functional dependence regardless of cognitive impairment (p< 0.001). Intact Cognition < functional dependence at admission (p <0.01) and discharge (p = 0.004) No difference bw groups for rehabilitation gain 210 home dwelling patients with Alzheimers + caregiver. Average age 78 Community/Outpatient rehabilitation Randomised Control Trial 1 Group Exercise (GE): Physio led, 1 hr, 2x/wk 2 Home Exercise Programme (HE): with Physio 1 hr, 2x/wk 3 Usual care (CG) 1 year All deteriorated in function. Significantly faster in Control Group 6months (p 0.003) and 12 months (p 0.015). FIM: HE -7.1, GE -10.3, CG Significant fewer falls HE and GE Lower cost health and SS in HE ($25,112), GE ($22,066), CG ($34,121)

33 Functional limitation is the primary determinant of resource utilisation Care = Cost Meier 2013

34 Decreased dependency on Carers By improving patients function we decrease dependency on carers Scialla 2000 Elderly cancer patients with asthenia Improved functional ability from in need of significant assistance in all ADLs to requiring moderate assistance with self care Average change in FIM score. Every 1 point gain in FIM score = decrease caregiver time by 3-4 min (average decrease caregiver time by 28minutes) Significant impact on caregiver burden once patient returned home

35 Functional limitation is the primary determinant of resource utilisation Care = Cost Meier 2013

36 Challenges for Palliative Care to be fit for the future

37 Frailty associated with adverse rehabilitation outcomes multidimensional construct, encompasses more than dependence for activities of daily living health and illness, attitudes, practices, resources Wells et al 2003 Increased length of inpatient stay Predictor of poor functional gain Associated with increased mortality Age, gender and co-morbidities no significant impact on rehabilitation outcomes Dementia leading cause of non-fatal disability in developed world median survival years High users of health and social services Disproportionate impact in capacity for independent living Singh et al 2012 Stephan and Brayne Knapp and Prince 2007

38 Rehabilitation Palliative Care Geriatrics Van Dam van Isselt et al 2013 Calanzani, Higginson, Gomes et al 2013 WHO Better Care for Older People 2011

39 As we continue to advocate for earlier access to palliative care services, we need to also embrace the integration of a chronic disease self-management approach earlier in the trajectory of life-limiting illness. This will be essential if we are to reduce the demands for longer-term hospice care and meet the goal of palliative care to enable patients and their families to live well until the end of life. Howell 2012

40 Rehabilitation Increased Number Deaths Minimise disability Maximise Independence Aging Population Reduce dependency burden on Carers Increased Disability Promote wellness/ self-management Reduce need for Health Services Increased Dependence on Carers Reduce pressure Palliative Care Support Preferred Place of Care Increased Demand on Health Services Reduce Cost to health care Services and community

41 Palliative Care Rehabilitation, at its best is the transformation of the dying into the living the restoration of a patient to a person Doyle 2004 There is great opportunity and great need for us to be more rehabilitative in our approach to palliative care