Teva Pharmaceuticals Europe BV, Piet Heinkade 107, 1019 GM Amsterdam, Netherlands Date of preparation: March 2017. HQ/ONCO/17/0001 BETTER CONVERSATIONS, BETTER CARE : HOW MEANINGFUL CONVERSATIONS IMPROVE PATIENT EXPERIENCE AND QUALITY OF LIFE Dr Peter Kirkbride Clatterbridge Cancer Centre, UK
Gawande A. Being mortal. New York, NY: Metropolitan Books; 2014.
VIDEO YOUTUBE: https://www.youtube.com/watch?v=hziiqj5hx2e
EARLY PALLIATIVE CARE INTERVENTIONS Recognition that increasing medicalisation of dying may be denying patients what they want in the final weeks/months of life Concerns that toxic (and expensive) treatments (e.g. CDF) may be used with little return during the end-of-life phase, which may be adversely affecting the quality of life/death Emerging evidence points to the benefits of radically changing the culture of engagement with patients by professionals; this requires focus on supporting change in clinical behaviour CDF, Cancer Drugs Fund.
THE CANCER DRUGS FUND In July 2010 the UK NHS announced the introduction of the CDF, designed to improve access to drugs not yet approved for use on the NHS in the palliative setting: Initial budget GBP 200 million p.a. Almost GBP 1.5 billion spent on CDF since 2011 Yet chemotherapy does not make a significant contribution to survival during end-of-life 1 The relative contribution of cancer drugs to OS is small 2 NHS, National Health Service; OS, overall survival. 1. Khatcheressian J, et al. Oncology (Williston Park). 2008;22:881-8. 2. Morgan G, et al. Clin Oncol. 2004;16:549 60.
Median survival was longer in patients receiving early palliative care vs standard care (11.6 months vs. 8.9 months; p = 0.02) despite fewer patients in the early palliative care group receiving aggressive end-of-life care (33% vs 54%; p = 0.05) Temel J, et al. N Engl J Med. 2010;363:733-42.
PALLIATIVE CARE IS A HIGH-VALUE BUT LIMITED RESOURCE Palliative care outcomes are driven by high-quality communication Improved quality of life 1,2,3,4,5 Less use of aggressive care 1 25% increase in survival 1 Lower costs 1 We do not, and will not, have enough palliative care providers to reach all patients who could benefit 6 We need scalable interventions targeted at non-palliative-care generalist and specialist clinicians to assure universal access to key elements of palliative care 1. Temel J, et al. N Engl J Med. 2010;363:733-42. 2. Bakitas M, et al. JAMA. 2009;302:741-9. 3. Higginson I, et al. Cancer J. 2010;16:423-35. 4. Jacobsen J, et al. J Palliat Med. 2011;14:331-6. 5. Back AL, et al. J Palliat Med. 2014;17:1244-8. 6. Lupu D, et al. J Pain Symptom Manage. 2010;40:899-911.
THE SERIOUS ILLNESS CARE PROGRAMME Mission: to improve the lives of all people with serious illness by increasing meaningful conversations about their values and priorities Uses systematic approach to implement an evidence-based primary palliative care intervention in order to have more, better, and earlier conversations about goals and values within the setting of serious illness
A SERIOUS ILLNESS CONVERSATION GUIDE... Available from: https://www.ariadnelabs.org/ wp-content/uploads/sites/2/2015/08/serious- Illness-Conversation-Guide-5.22.15.pdf Accessed March 2017.
IS AT THE CENTRE OF A SYSTEMATIC APPROACH TO SERIOUS-ILLNESS CARE A systematic approach Train clinicians to use the Serious Illness Conversation Guide Identify patients at high risk Prompt clinicians to have conversations at the right time Have the conversation using the guide Prepare patients and families for further discussions Document the conversation in the medical records Measure progress, identify challenges, and coach to better performance
TRAINING IN THE USA Standard clinician training 2½ hour training, 3 10 clinicians Engagement Knowledge building Role play Communication in Serious Illness (CME course) 2½ day course, 180 attendees 100+ on waiting list Highly rated (4.6/5 for quality of sessions and relevance to practice) 120+ joined a community of practice following the course CME, continuing medical education.
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ESTABLISHING THE EVIDENCE
THE DFCI TRIAL: A SYSTEMATIC INTERVENTION 1 2 3 4 Clinicians select patients (prognosis < 1 year) Clinician training (SICG) Clinician prompt (email, guide) Patient prepared 5 Conversation delivered DFCI, Dana-Farber Cancer Institute; EMR, electronic medical records; SICG, Serious Illness Conversation Guide. 6 Documented in EMR Family communication guide 7 Sanders J. In preparation.
THE DFCI TRIAL: PATIENT SELECTION The surprise question Would you be surprised if this patient died within 12 months? Sanders J. In preparation.
THE DFCI TRIAL: PATIENT SELECTION 20,472 Patients screened 2,835 Patients at high risk of dying 342 Patients randomised 176 Intervention-arm patients 166 Control-arm patients Sanders J. In preparation.
PRELIMINARY RESULTS OF THE DFCI TRIAL: MORE, BETTER, AND EARLIER CONVERSATIONS Outcome a Intervention patients who died (n = 60) Control patients who died (n = 71) p value ACP documentation before death, % 92 70 0.0037 Median timing of ACP before death, days 143 63 0.0008 ACP documentation in module before death, % 68 28 < 0.0001 Code status only 5 55 < 0.0001 Values and goals or additional information documented 95 45 < 0.0001 a Preliminary chart review; includes ACP module and progress notes since date of enrolment. ACP, advanced care planning. Sanders J. In preparation.
GAD-7 anxiety score PRELIMINARY RESULTS OF THE DFCI TRIAL: INTERVENTION REDUCES PATIENT ANXIETY Effect of intervention on anxiety over 23 weeks 5,0 4,5 4,0 3,5 3,0 2,5 2,0 1,5 Control Intervention 0 1 2 3 4 5 6 7 8 9 10.4 11 12 13 14 15 16 17 18 19 20 21 22 23 Time after baseline survey (weeks) GAD-7, Generalized Anxiety Disorder 7. Sanders J. In preparation.
PHQ-9 depression score PRELIMINARY RESULTS OF THE DFCI TRIAL: INTERVENTION REDUCES PATIENT DEPRESSION Effect of intervention on depression over 22 weeks 6.0 p = 0.0247 5.5 5.0 4.5 4.0 3.5 3.0 Control Intervention 0 1 2 3 4 5 6 7 8 9 10.4 11 12 13 14 15 16 17 18 19 20 21 Time after baseline survey (weeks) 22 PHQ-9, Patient Health Questionnaire 9. Sanders J. In preparation.
PRELIMINARY RESULTS OF THE DFCI TRIAL: IMPROVING THE PATIENT EXPERIENCE I used the guide she gave me to talk with my children (aged 21 and 24 years) about my illness. It gave me a focus and I felt relieved after I spoke about some difficult stuff with them. Oncology patient It was good to validate that my doctor understands how I feel about dealing with my illness and what types of choices I would make concerning quality of life vs longevity. Oncology patient
PRELIMINARY RESULTS OF THE DFCI TRIAL: IMPROVING THE PROVIDER EXPERIENCE It makes sure you do the right thing as a doctor. It allows you to address the really hard medical conversations. Oncology MD I found the guide very helpful as it kept me focused on the points to review. Oncology MD
THE DFCI TRIAL: A SUMMARY Early results suggest our intervention is feasible, acceptable, and efficacious: Appropriate patients are being identified by asking the surprise question Training programme has been adopted and viewed as effective by clinicians (average rating 4.3/5) 97% of trained clinicians have used the guide Prompting system stimulates discussions in 90% of patients within 2 visits Patients and clinicians find the intervention acceptable Intervention results in more, better, and earlier conversations about serious-illness care values and goals Intervention results in more patient-centred, comprehensive, and retrievable documentation in the EMR Sanders J. In preparation.
THE DFCI TRIAL: A SUMMARY Our intervention improves the patient experience: Patients view the conversation as worthwhile Patients report enacting concrete behavioural changes as a result of the conversation The intervention is not harmful to patients The intervention does not increase depression and anxiety, and may reduce them Lower levels of depression and anxiety persist for at least 2 months after the intervention
I M P L E M E N TING SERIOUS-ILLNESS CONVERSATIONS I N THE UK 1-year pilot funded by NHS England
SERIOUS ILLNESS IN THE UK 480,000 die in England every year 79% would prefer to die at home 85% of bereaved relatives of people who had died in hospital said that their family member had wanted to die at home National Survey of Bereaved People (VOICES) 2013. Available from: https://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/healthcaresystem/ bulletins/nationalsurveyofbereavedpeoplevoices/2015-07-09 Accessed March 2017.
AGGRESSIVE CARE AT THE END OF LIFE CAN BE HARMFUL Aggressive care at the end of life is often harmful For patients: 1,2 Lower quality of life Greater physical and psychological distress For caregivers: 1,3 More major depression Lower satisfaction 1. Wright A, et al. JAMA. 2008;300:1665-73. 2. Mack JW, et al. J Clin Oncol. 2010;28:1203-8. 3. Teno J, et al. JAMA. 2004;291:88-93.
WHAT S IMPORTANT TO ME: A REVIEW OF CHOICE IN END OF LIFE CARE Available from: http://www.ncpc.org.uk/ sites/default/files/choice%20review_fin AL%20for%20web.pdf Accessed March 2017.
I want to be cared for and die in a place of my choice I want involvement in, and control over, decisions about my care I want the people who are important to me be supported and involved in my care What choices are important to me at the end of life and after my death? I want access to high-quality care given by well-trained staff I want the right people to know my wishes at the right time I want support for my physical, emotional, social, and spiritual needs I want access to the right services when I need them Available from: http://www.ncpc.org.uk/ sites/default/files/choice%20review_final%20for%20web.pdf Accessed March 2017.
HIGH QUALITY COMMUNICATION IS ASSOCIATED WITH BETTER SERIOUS-ILLNESS CARE Early conversations about patient goals and priorities in serious illness are associated with: Enhanced patient-centred care Time to make informed decisions and fulfill personal goals 1 Improved quality of life/patient satisfaction 2 Fewer hospital admissions More and earlier palliative care 3 Better patient and family coping Eased burden of decision making for families 4 1. Wright A, et al. JAMA. 2008;300:1665-73. 2. Mack JW, et al. J Clin Oncol. 2010;28:1203-8. 3. Chiarchiaro J, et al. Ann Am Thorac Soc. 2015;12:1528 33. 4. Detering K et al. BMJ. 2010;340:c1345.
ADVANCED COMMUNICATION SKILLS TRAINING IN THE UK Advanced Communications Skills Training (ACST) was developed in accordance with the National Cancer Plan (2000) and NICE guidance for supportive and palliative care (2004), which recommended that Communicating significant news should normally be undertaken by a senior clinician who has received advanced level training and is assessed as being an effective communicator. Loss of funding since 2011 means this is no longer routinely available There is no formal national communication skills programme for oncology in the UK NICE, National Institute for Health and Care Excellence. NICE Guidance on Cancer Services. Available from: https://www.nice.org.uk/guidance/csg4/resources/improving-supportive-andpalliative-care-for-adults-with-cancer-773375005 Accessed March 2017.
PATIENTS WANT TO TALK ABOUT THEIR CARE IN THE LAST YEAR OF LIFE Want information about, % Patient response Always If I asked No Don t know Prognosis 77.0 16.2 5.2 1.6 Symptoms 80.0 15.0 3.9 1.1 Care options 91.3 6.4 2.0 0.4 If you had less than a year to live, would you want to know? Preferences for medical information in England (N = 1,351) Harding R, et al. Psychooncology. 2013;22:2298 305.
MANY PATIENTS DO NOT DISCUSS THEIR GOALS WITH CLINICIANS Fewer than one-third of patients with end-stage medical diagnoses reported discussing EoL preferences with clinicians 1 Patients with advanced cancer: First EoL discussion took place median 33 days before death 55% of initial EoL discussions took place in the hospital Only 25% of conversations took place with the oncologist 2 Conversations often fail to address key elements of quality discussions 3 EoL, end of life. 1. Heyland D, et al. Open Med. 2009; 3:e101-10. 2. Mack J, et al. Ann Intern Med. 2012;156:204 10. 3. Wright A, et al. JAMA. 2008;300:1665-73.
WHEN IT DOES OCCUR, PLANNING IS OFTEN INCOMPLETE Many conversations do not address key elements of quality discussions: Prognosis Emotions Trade-offs Personal goals
Patients a (%) BASELINE REVIEW CLATTERBRIDGE CANCER CENTRE: TOPICS DISCUSSED 100 80 60 40 20 0 Treatment Decisions Prognosis Symptom Management Pain Control Wishes Fears a 50 sets of case notes examined; median age: 74 years (range 30 96); 72% male. Clatterbridge Cancer Centre internal audit, 2016.
Patients a (%) BASELINE REVIEW (CONTINUED) CLATTERBRIDGE CANCER CENTRE: TOPICS DISCUSSED 100 80 60 40 20 0 Goals Strength Abilities Trade offs Family Informed Relationships Life Supporting Procedures DNACPR PPC DNACPR, do not attempt cardiopulmonary resuscitation; PPC, prescription prepayment certificate. a 50 sets of case notes examined; median age: 74 years (range 30 96); 72% male. Clatterbridge Cancer Centre internal audit, 2016.
INITIATING CONVERSATIONS CAN BE A CHALLENGE FOR CLINICIANS Lack of training 1,2 Time constraints 2 Varying attitudes to serious illness conversations: Uncertainty about timing 2 Concerns about harming patients 2,4 Prognostication challenges 3,4,5 Ambiguity about who is responsible 3 Multiple specialists 1. Zhou G, et al. Oncol Nurs Forum. 2010;37:E400-10. 2. Curtis JR, et al. Arch Intern Med. 2000;160:1690-6. 3. Buss MK, et al. Cancer. 2011;117:4304-1. 4. Lovell A, et al. Palliat Med. 2014;28:1026-35. 5. Clayton JM, et al. Support Care Cancer. 2005;13:589-99.
HOW LONG WILL A CONSULTATION TAKE WHEN USING THIS GUIDE? A. 20 minutes or less B. 20 40 minutes C. 40 minutes or more
SERIOUS ILLNESS CARE PROGRAMME UK: MISSION STATEMENT To improve the lives and personalise the care of all people with serious illness through meaningful conversations with their clinicians about their goals and priorities. Better conversations better care
THE SERIOUS ILLNESS CARE PROGRAMME UK Tools Serious Illness Conversation Guide Clinician reference guide Patient preparation materials Family communication guide Train master trainers Train clinicians Train-the-trainer Education Course 101 Course 201 Primary clinician training (1 day) Coaching Course 101 Course 201 Systems Change Patient identification Reminder system Conversation, using the guide Document conversation Patient and family support QI, quality improvement. Measurement and improvement (QI)
EVALUATION OF PROGRAMME Clinician training Number of clinicians trained Evaluation of training day Patient screening Number of patients screened each month Number of patients identified as high-risk Number of conversations taking place Number of patients who decline a conversation Documentation Date patient identified as high-risk Date of initial conversation or conversation declined Date conversation recorded in EMR Date of follow-up conversations Date of death P a t i ent evaluation Patient survey after each conversation
DOCUMENTING THE CONVERSATION CLATTERBRIDGE CANCER CENTRE
SERIOUS ILLNESS CARE PROGRAMME UK NATIONAL RESEARCH PROGRAMME The National Research Programme is led by the Clatterbridge Cancer Centre and the Marie Curie Palliative Care Institute Liverpool, UK, in collaboration with Ariadne Labs, Boston, MA, USA Research 1: pre-pilot-implementation (completed): Face validity of the Serious Illness Conversation Guide Refined guide; format suitable for use in the UK Research 2: pilot-implementation (underway): Feasibility study, at Clatterbridge Cancer Centre Study methodology; recruitment; outcome measures Research 3: post-pilot-implementation (in development): Pilot cluster RCT Programme efficacy; develop evidence base; support wider implementation RCT, randomised controlled trial.
Avaliable from: http://betterconversations.org.uk/ Accessed March 2017.
THE GOAL: BETTER CARE FOR PATIENTS Where we are now Doing some of the right things some of the time for some of our patients with serious illness Where we want to be Doing all the right things all of the time for all of our patients with serious illness
Dr Peter Kirkbride Clatterbridge Cancer Centre Bebington, Wirral, CH63 4JY, England peter.kirkbride@nhs.net www.betterconversations.org.uk