The Royal Marsden Palliative Care The Benefits of Early Intervention Dr Anna-Marie Stevens, Nurse Consultant Symptom Control and Palliative Care Team, The Royal Marsden NHS Foundation Trust, London, UK Anna-marie.stevens@rmh.nhs.uk
2 The Royal Marsden National CQUIN The Christie Cancer Centre NHS England https://www.england.nhs.uk/wp-content/uploads/2016/03/ca1-enhncdsupprtv-care-guid.pdf
3 The Royal Marsden Aim of session To offer insight into what is determined as early palliative care To heighten awareness and evidence of the benefits of an early referral to palliative care To share an innovative model of Integrated oncology and Palliative Care
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5 The Royal Marsden Starting point I have bowel cancer and I might die, I know that, but it s the symptoms that are killing me now (cancer patient 2017)
6 The Royal Marsden What is Palliative Care Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual Is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications WHO (2002)
7 The Royal Marsden How many people need palliative care In high income countries 69-82% of those people who die need access to palliative care Murtagh et al. (2014)
8 The Royal Marsden Caregiver Stats 50% of households serve as unpaid caregivers Mostly women 30% care for more than one patient 20 hours/week average time spent for care 25% do more than >40hours/ week of care
9 The Royal Marsden What s in a name? 24 definitions of palliative care (Hui et al 2013) Professional confusion Patient confusion Specialist/Non-specialist End of Life Care Strategy
10 The Royal Marsden Impact of a change in name to a service 41% increase in new referrals following a change of name from palliative to supportive care in the in patient setting In the OPD observed an increase in the numbers of referrals with potentially curable disease (increase from 5 to 14%) Median survival was longer by 6 weeks Total numbers of patients with solid tumours 1,782 of those, GI cancer was the highest Dalal et al.(2011)
11 The Royal Marsden Challenges and barriers to early intervention Misconception that Palliative care equates to End of Life Care Survey demonstrated that 60% of clinicians thought PC was synonymous with end of life care 63% of clinicians did not think PC would see patients receiving chemotherapy Clinicians under recognise patients symptoms
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14 The Royal Marsden Change Presentation title and date in Footer dd.mm.yyyy Integration of oncology and palliative care? Concept internationally is well documented Question is how to make it happen in practice
15 The Royal Marsden What do patients think I didn t really know what Palliative Care had to offer. If you knew what it was about it wouldn t be scary. If the staff won t talk about it then how can we ever know what it is? To get your pain under control and stuff like that, then you can get on with living. I had lots of people trying to help but nothing seemed to work until I met the team (Patient 07). I think just be more open about what actually the service can offer, sort of maybe even just posters on the wall. I ant tell you how bad my sickness was.then they just came in and after a day or so it stopped, why didn t I meet them earlier(patient 04).
16 The Royal Marsden Patient view I think it s really important to have an equitable experience. So if it s something that s going to be introduced here (research site) or whatever, I think it should, if it is found to work, it should be available to everybody that has a need for it. Also remember to make sure that everyone on the team remembers to talk about it that s the problem. I was referred straight away when diagnosed with cancer but could have done with some help with my CF (Patient 04).
Early intervention of Specialist Palliative Care for patients with advanced cancer Trial evidence of benefits: Improved Quality of Life Reduced depression Less aggressive care at EOL Increased survival Better symptom control Improved prognostic understanding Relationships with professionals Temel JS et al. NEJM 2010; 363: 733-42 Zimmerman C et al. Lancet 2014; 383: 1721-30 Bakitas M et al. JAMA 2009; 302: 741-9 Ferrell B et al. JCO 2017; 35(1): 96-112
Late referrals to Specialist Palliative Care Royal Marsden data: Time between SPC referral and death: median (range) RM NSCLC (N=48) 79 days (10-1315) RM Gynae cancers (N=47) 98 days (12-1235) RM Renal cell (N=44) 83.5 days (2-1871) Other site data: Leeds cancer patients(n=3903)* 37 days MD Anderson all cancers** 1.4 months (0.5-4.2) MD Anderson lung cancer** 2 months (1.2-2.8) *Bennett M et al, BMJ Open 2016; 6 (12): e012576 ** Hui D et al. The Oncologist 2012; 17 (12): 1574-1580
SPC Referral Triggers 11 major referral criteria Delphi study Hui D et al. 2016 Lancet Oncology. Referral criteria for outpatient specialty palliative cancer care: an international consensus Parallel referral vs Augmented referral Hui et al. 2017 Support Care Cancer. Epub July 2017. Automatic referral to standardize palliative care access: an international Delphi survey
Triggers tool: Underpins a new Integrated PC and Oncology Service Triggers Tool to proactively identify which cancer patients may benefit from Specialist Palliative Care referral Specialist Palliative Care team involvement alongside active anti-cancer therapy Key stakeholders: Patients and carers, Medical oncologists, Lung MDT incl research group, Community palliative care teams, Hospital support SPC team, Trust management
Triggers : A New Integrated Palliative Care Service 12 mth service evaluation to assess the feasibility of the Triggers service: To determine the proportion of eligible patients reviewed by the service To describe the SPC needs of patients scoring positive on the Triggers tool
Triggers : A New Integrated Palliative Care Service Addresses issues related to sustainability Provision of information about SPC and ACP Addresses issues related to appropriateness of SPC referral
23 IPOS Patient Version Patient name : Date (dd/mm/yyyy) : Patient number : (for staff use) Q1. What have been your main problems or concerns over the past 3 days? 1.... 2.... 3.... Q2. Below is a list of symptoms, which you may or may not have experienced. For each symptom, please tick one box that best describes how it has affected you over the past 3 days. Not at all Slightly Moderately Severely Overwhelmingly Pain 0 1 2 3 4 Shortness of breath 0 1 2 3 4 Weakness or lack of energy 0 1 2 3 4 Nausea (feeling like you are going to be sick) 0 1 2 3 4 Vomiting (being sick) 0 1 2 3 4 Poor appetite 0 1 2 3 4 Constipation 0 1 2 3 4 Sore or dry mouth 0 1 2 3 4 Drowsiness 0 1 2 3 4 Poor mobility 0 1 2 3 4 Please list any other symptoms not mentioned above, and tick one box to show how they have affected you over the past 3 days. 1. 0 1 2 3 4 2. 0 1 2 3 4 3. 0 1 2 3 4
24 Over the past 3 days: Q3. Have you been feeling anxious or worried about your illness or treatment? Q4. Have any of your family or friends been anxious or worried about you? Not at all Occasionally Sometimes Most of the time Always 0 1 2 3 4 0 1 2 3 4 Q5. Have you been feeling depressed? 0 1 2 3 4 Always Most of the time Sometimes Occasionally Not at all Q6. Have you felt at peace? 0 1 2 3 4 Q7. Have you been able to share how you are feeling with your family or friends as much as you wanted? Q8. Have you had as much information as you wanted? Q9. Have any practical problems resulting from your illness been addressed? (such as financial or personal) Q10. How did you complete this questionnaire? 0 1 2 3 4 0 1 2 3 4 Problems addressed/ No problems Problems mostly addressed Problems partly addressed Problems hardly addressed Problems not addressed 0 1 2 3 4 On my own With help from a friend or relative With help from a member of staff
Triggers : A New Integrated Palliative Care Service 2 dedicated Clinical Nurse Specialists Palliative Care Clinical Team Consultants Nurse Consultant Junior doctors Clinical Nurse Specialists Oncology Clinical Team Doctors Clinical Nurse Specialists Data administrator Hospital Senior Management: Outpatient transformation group agenda Community palliative care teams patient 5 Lung outpatient clinics across 2 sites Other tumour types e.g. sarcoma Other oncology services e.g. acute oncology
Data from 4 months of new Triggers service 81% PS 0-1
Palliative care needs at 1 st assessment IPOS score 0 1 2 3 4
Triggers : A New Integrated Palliative Care Service Triggers Integrated palliative care service: Feasible Identifies patients with SPC needs who would benefit from early SPC referral Ongoing service evaluation: Longitudinal SPC needs Time between SPC referral and death Uptake of ACP Future research: Validity: T+ vs T- with respect to SPC needs Effectiveness: Cluster RCT to test impact on key SPC outcome measures eg. earlier SPC referral, reduced admissions in last 90 days of life
The Royal Marsden Effect of specialist palliative care services on quality of life in adults with advanced incurable illness in hospital, hospice, or community settings: systematic review and meta-analysis British Medical Journal Gaertner et al. 2017 Change Presentation title and date in Footer dd.mm.yyyy 29
30 The Royal Marsden Primary/Secondary Outcomes Health related QOL (FACT, EORTC QLQ-C30, McGill QOL, SF-36) Survival Depression (Beck Depression inventory, Hamilton Rating scale for Depression, HADS, PHQ-9, CES-D) Symptom Intensity (ESAS, BPI) Caregiver burden Healthcare utilisation (LOS, OP attendance)
31 The Royal Marsden Conclusions For people with advanced cancer Grade of evidence, very low to low Patients with advanced cancers could benefit from early palliative care with respect to small improvements in quality of life and symptom intensity Depression, survival uncertain
32 The Royal Marsden Early Palliative Care is helpful if we can identify which patients need it
33 The Royal Marsden Questions